Protected: Family Drama
Day of Statistics
I got a message on LiveJournal this morning to say I started my blog there seventeen years ago. My blog there has been defunct and hidden for years, but it means I’ve been blogging for seventeen years, minus eighteen months or so when I switched to writing poetry that I didn’t feel confident enough to share. Other important dates: E comes to the UK in two weeks today. And we’re closer to our wedding than to New Year’s Day.
However, I’m in full-blown negative mood today: pessimistic (not about marrying E, but about everything else, from wedding planning to global politics) and drained. I got up late and it’s been hard to do anything. Mum and Dad have been doing Pesach preparation and I haven’t been joining in, which I feel bad about. Dad and I were supposed to buy suits for the wedding today, but the Tube strike ruled that out. I wanted to start getting the invitations done, but I didn’t manage it. I just felt overwhelmed and unable to do anything. I got a bit of a stress headache again too. I ended up taking the day as a mental health day. I know I’ve had a busy few days and I shouldn’t be too hard on myself, but Pesach and the wedding are going to happen when they happen regardless of what I do and I need to be ready.
Family wedding drama has continued. It’s not actually drama, mostly because I agreed to most of my family’s requests. I just feel uncomfortable about what I’ve agreed to and I worry that E and especially I will be exhausted by the time we get to the wedding day (or wedding night). I feel my family understand autism up to a point, but they don’t really understand autistic exhaustion (e.g. today) as opposed to just being tired and I don’t know how to explain it to them. I’m pleased they accept that autism exists and that I’m autistic (many people on the autism forum don’t have that from their families), but there’s probably an empathy problem of them not understanding how I think and feel and not even realising that they don’t understand. Most of them don’t even know that E may be autistic too, as I haven’t told them, as I thought it was E’s decision to say, not mine.
(Parenthetically, autistic exhaustion is something that isn’t really acknowledged by autism researchers, who are only beginning to research it, yet it’s something that so many autistic people complain of, particularly those who should probably be described as “moderately-functioning” – not super-high-functioning people like Steve Jobs and Elon Musk (supposedly) and not non-verbal severely autistic, but able to do some “normal” activities, but who struggle with them and often suffer afterwards.)
I don’t know what to do about any of this. Sometimes I feel that I come quite low down the family pecking order, when it comes to making decisions of mutual concern. My therapist says that there’s often someone in a family who isn’t heard, or isn’t heard as much. I think in my family, it’s me. For years this didn’t worry me much. I would either opt out of stuff, citing mental illness, or I would grin and bear it, but I didn’t get much say over what was happening and I guess I didn’t actually care that much. But now I want more say for E’s sake as much as my own and I don’t know how to be heard. My therapist said this is common too, and why so many weddings result in arguments, because it’s when people get married that they try to change the family dynamic for their spouse’s sake, but I know from experience that people don’t like changes in the family dynamic, especially where the less-assertive person becomes more assertive. It’s hard to draw boundaries after so long (I’m nearly forty!) and when I do genuinely need more help from my parents than most people my age. Sometimes the boundary between “willing to compromise” and “not enforcing boundaries” is not clear.
Lately I feel difficulty engaging in autistic special interests that might revive me. I still enjoy the original series of Doctor Who, but the last few years, and the news about the episodes coming later this year, have soured me on the new series, although I’m still looking forward to watching Matt Smith episodes with E when she’s here. We’ve put Doctor Who viewing on hold for the next fortnight, though, as E is busy moving and is going to be living with her parents for a bit.
I don’t know if Judaism counts as a special interest, but I’m too exhausted and lacking in time to engage much with it, and it’s hard working out what I can do, as well as realising that to be a “good frum Jew,” you really have to be neurotypical and mentally healthy, and ideally quite well-off. And I don’t have time, energy or spoons at all for writing (other than blogging), my other hobby. So I feel rather stuck.
I ended up taking some time out for a while for my mental health and maybe think about invitations later today. Watched Undermind and Yes Minister. I’ll probably read Batman before bed. I tried reading Children of Dune before, but it’s heavy-going and by this stage in the series, it seems like all the even vaguely-likeable characters have died or become evil and unlikeable/unrelatable.
Just read a not-very-good devar Torah (Torah thought) from a very prominent UK Modern Orthodox rabbi that said that, if you keep Shabbat (the Sabbath), God will ensure you aren’t out of pocket as a result. I don’t know why rabbis share ideas like this. All you need is to find one person who ended up out of pocket as a result of keeping Shabbat and you’ve disproved it, casting the whole of Judaism into doubt. Plus it sends a negative to people struggling financially that God is not looking after them. It just reinforces my feeling that the Orthodox world is designed for “winners” and not “losers.” Although the community does provide support for the poor, unlike some other minority groups in the Orthodox community.
I also read a very unhelpful article on dealing with wedding day anxiety for autistics. Like a lot of stuff aimed at autistics, it made me feel like a Fake Autistic for not reacting the way we’re “supposed to,” e.g. I don’t have such a problem with bright light, I only stim very subtly and don’t use stim toys. The only thing I took from it was the need to have time away from the crowd during the wedding day, but E and I have basically planned almost the reverse, four or five hours around people and nothing before or after. I guess we can see if we can slip away during the tea, but I worry my parents will want us to mingle the whole time. I hope it works out, especially now the Shabbat the day before has basically been joined to it.
Protected: Day of Statistics
I struggled to get up for my telephone appointment with the doctor today. I managed to get up and eat breakfast beforehand, but I was still in pyjamas when the doctor called. I think I procrastinated about getting up and getting dressed because I was nervous about the call, more because it was a phone call than because I was worried about bad news. I did experience the NHS working well for once: the doctor said he would look into my missing sleep study results and gave me the name of the NHS Trust he referred me to so I could chase them too. He also sent a prescription straight to the pharmacist so I could collect it in the afternoon.
I felt most of the day feeling exhausted. I did some wedding paperwork and went out to get that prescription and some blood test forms as well as going to check my library card still works. I tested it by borrowing two graphic novels (I have too many prose novels and non-fiction on my ‘to read’ pile to add more of those), one Batman collection of short stories (Batman Black and White Volume 4) and the first volume of Neil Gaiman’s The Sandman series, which my oldest friend recommended I read about twenty-five years ago. The library’s graphic novel section is disappointingly small and focused on superheroes (notwithstanding my recent Batman reading/borrowing), but as I’m slow to try new things, it probably doesn’t make much practical difference. Long before I got home, I was struggling with exhaustion and feeling slightly faint. I’m still not sure what causes this, except the doctor today said it doesn’t sound like diabetes, although he’s going to test me for it to be sure.
I didn’t do much in the rest of the afternoon. I did a few minutes of Torah study and cooked plain pasta for dinner. I would have liked to have done more Torah study and cooked something more interesting for dinner, but ran out of time. Then I had a long wedding planning Zoom call with E, my parents and her parents. We made some progress, but it was overwhelming. My parents and E’s parents get on well, which is good, but it means the call is constantly at risk of going off at tangents into a general conversation. E and I Zoomed a bit by ourselves afterwards, but I was too drained to speak for longer.
I’m left wishing I had done more, had more energy and coped better with things, although I suppose I didn’t do too badly. I am exhausted now. I read a few pages of Children of Dune at lunch and watched an episode of Yes Minister at dinner, but not much else relaxing. The Yes Minister episode was also the bleakest one, The Whisky Priest, where Hacker tries to tell the Prime Minister that British arms are being sold to terrorists, but gets bullied out of it by Sir Humphrey Appleby and the Chief Whip. It’s funny, but less funny than usual, and more downbeat, even by the standard that Yes Minister episodes usually end with the status quo upheld and no positive change forthcoming, so they’re all downbeat to some extent, especially if you think this is how British government really works (Margaret Thatcher did; it was her favourite TV programme). Ugh, tangent, but I’m too tired to do anything about it. OK, bedtime.
Resentful of God?
You might recall that yesterday I went to a big family get-together, stayed longer than I intended (because I was enjoying it), then forced myself through wedding preparation and Torah study when I got home. This was probably not so wise as I was pretty exhausted today.
I got up on time, but I struggled to get going. I did get out on time, but was delayed by my oyster card (London public transport fare card) not working. Apparently if the card cracks even slightly, it’s completely broken. At work, my jumper ripped and I felt quite faint before lunch. I’m used to feeling exhausted and faint at home, but struggling to get through the last half hour before lunch is a new difficulty. I’m glad I’m speaking to the doctor tomorrow (half glad anyway – see below).
The afternoon was mostly spent sorting papers in the office, which I hadn’t done for months. It feels a bit like the children’s toy where you have to rearrange tiles to form a picture, except that I didn’t have a “missing” tile to allow me to move things around. I probably also need to get clearer instructions from J as to what I should keep or dispose of. I worried in the past that I was throwing away too much; now I worry that I won’t be able to throw away enough. It doesn’t help that I haven’t done this for months (it’s a job for the slow times at work and not the busy time at the beginning of the year) and couldn’t really remember where different papers were.
I spent most of the day feeling down, drained and bored and was exhausted to the point of feeling somewhat ill again when I got home. I feel better now for having had dinner and watched Yes Minister (the one where Hacker is made “Transport Supremo,” a job Sir Humphrey says he needs “like an aperture in the cranial cavity.”)
I said I was only half glad I am speaking to the doctor tomorrow. This is because I will miss volunteering because I don’t want to take a phone appointment with the doctor somewhere were reception is poor and there is no privacy. As a lot of other volunteers are away, this means that tomorrow there will be no non-perishable food packers (my usual job). I’m sure food will get packed; there are paid staff as well as other volunteers. But I feel a little bad that I’m missing the whole morning for a ten minute call, especially as I didn’t want to admit to the doctor’s appointment and so said I’m doing wedding stuff. Which is not a lie, as I will be, but I could have done that as well as volunteering, although I would have been exhausted (again).
During my twenties and early thirties, when I spent much of my time struggling with depression (which was probably at least in part autistic burnout), I was angry at God sometimes. I tried to express it in my hitbodedut (unstructured prayer), but I felt like I was being blasphemous so didn’t always vocalise it much.
I thought I was past that and grateful for the positive things in my life now (E, having some kind of job even if it is part-time and not ideal for an autistic person), but I have been wondering if I’m harbouring some anger or at least resentment against God for making me autistic. As I’ve said before, I experience my autism more as a disability than a difference, even though many of the autistic people I’ve come across advocate for the “difference” model. If I wasn’t autistic, I probably wouldn’t have met E, therefore it’s good that I’m autistic, but I feel that our financial troubles would be eased if I could hold down a full-time, nine to five job. I also feel that I would be serving God better if I could daven with a minyan (pray with a community) three times a day, study more Torah, be more involved in a community, focus on personal growth (etc.) than I’m able to do right now and not being autistic would make that service easier. This is despite the rabbi who said I should not be doing all those things right now (ever?). I guess it’s hard for me to believe that I shouldn’t be trying study Torah, grow, etc. even though a rabbi told me. The whole mindset of “Maybe I exaggerated how I feel so he gave the wrong answer?” kicks in.
I’m thankful to God, but maybe I’m resentful too. I stopped doing regular hitbodedut some months ago because I was “blocked” and couldn’t think of anything to say. Maybe I couldn’t vocalise my resentment OR my gratitude and just couldn’t say anything. (Lately I have restarted hitbodedut, but in a more structured way, trying to take ideas from a text to start a conversation.)
It doesn’t help that I have complex feelings towards the Orthodox community at the moment. I go back and forth blaming the community for my social isolation, then blaming myself (or my autism again) for not reaching out to them. Plus, there are a lot of wider negative societal issues in the Orthodox world right now that make connecting with it seem difficult. On some level, I ask if Torah can’t stop people being corrupt, racist or abusive, then what is the point of it? It’s easy for those negative feelings to carry over to God or alternatively to try to disconnect my feelings about God from those about the community in a very unJewish way.
OK, going to try to relax for the rest of the evening (probably Batman or more Yes Minister as I don’t think I should push myself to read something heavy like Children of Dune).
I was too exhausted to go to shul (synagogue) again on Friday night. I was wondering if I “give in” to exhaustion too easily these days, as I’ve often struggled to go to shul, particularly in the winter, but forced myself to do so and been fine once there. Then I remembered there was a choir this week and decided I definitely couldn’t cope with that, so I stayed at home.
Mum and Dad wanted to talk a lot about the wedding over dinner, which I didn’t really want, but couldn’t really stop them. I can’t even remember what we concluded in the end, although we didn’t decide anything without E’s approval. Afterwards, I wanted to do some Torah study, but I remembered being told by the mental health helpline rabbi that I shouldn’t overdo things and increase my exhaustion and anxiety, so I just read Judges: The Peril of Possession (on the biblical book Shoftim/Judges) for a while. It put Shimshon (Samson) in a light in which I had never really seen him before, as a Jew rebelling against the concept of Jewish distinctiveness and his own mission. To be honest, I’ve never connected with Shimshon, but he was more relatable here, though still pretty much a failure.
I had the intermittent headaches I’ve been getting for the last couple of weeks over Shabbat. They last for a few seconds, then go away again and come back seconds or minutes later. This doesn’t sound so bad and they aren’t too intense, but it’s hard to know whether to take medication for them when they come and go. They are always in one of the same two places, either on the left side of my forehead or in my right eye. My Mum cheerfully suggested I should ask the doctor for an MRI as I may have a brain tumour! (Yes, health anxiety is an issue in this house.) I think I should wait until the wedding anxiety calms down before I think about that, unless they become more intense or frequent, not least because I had an eye test a few weeks ago and the optician didn’t see anything wrong. I did take painkillers tonight, as the pain in my eye was distracting.
Because of the headache and the rabbi’s advice I did almost no Torah study today. I read a short essay by Dr Tanya White about theodicy and Iyov/Job which I had printed before Shabbat (Sabbath) and a couple of short essays on the weekly Torah portion. I had wanted to read more of The Guide for the Perplexed or the very long opening section of the coming week’s Torah portion, but my head/eye hurt too much and then once the medication kicked it, it was too late.
I did quite a lot of recreational reading, so I’ve nearly finished Harry Potter and the Prisoner of Azkaban.
I did some wedding and non-wedding related chores this evening, but not much. I feel a bit bad about wasting the time, but I probably do need some less-intense time. I wish I could have used it in a more structured way, but I got distracted by stuff online (AKA procrastination).
I’m wondering if I should set aside five or ten minutes a day for novel research reading. Not so much because I would achieve much in that time, but just to feel like I’m setting aside time for it and that it is still “in play.” I still regularly jot down ideas for it, so it is in play on some level, but this would feel more structured and might act as a reminder that in a couple of months I will have less stress and more time.
Something slightly weird happened on Friday that I don’t want to go into here, but now I feel vaguely bad for ever stopping following blogs, even though there is obviously no obligation to read someone’s blog indefinitely and people have stopped following mine. Possibly I’m over-thinking again.
I feel this blog has got very autism-centred. Maybe that’s not a bad thing, but I used to like it when I could include digressions on politics or literature. I just haven’t had much time/energy/brainpower/bandwidth/spoons/whatever you want to call it for that lately.
Every Mitzvah Counts
I was exhausted today, but had to get up to help with the Tesco grocery delivery. I went back to bed for forty minutes after breakfast, even though it was late, and that helped a lot. Just lying still in a dark room wrapped in my weighted blanket can really help with mood, even though it’s not a practical suggestion much of the time.
I do also need to get off the computer earlier at night. It’s such a relief to be off it, but it’s so hard to get to that stage, partly because of writing my blog post and speaking to E, but also because of internet procrastination. Procrastination does me no good, but I do it anyway. As I’ve said before, the internet seems so urgent and attention-grabbing, but often it’s not urgent or even relevant, it provokes pointless negative emotions and just leaves me feeling bad, but it’s addictive. It is the junk food of activities. At least E will be here LATER THIS MONTH and we won’t need to have late night (my time) Skype calls.
There was an apology for the family drama of the last few days, so hopefully things will be a bit more stable there from now on.
We got a contract from the photographer we want for our wedding. It’s good, but I find every stage in wedding planning can prompt “Did we make the right decision? This seems so final” thoughts.
I went to the bank and did a little shopping and was totally exhausted afterwards. E and I did some wedding paperwork stuff and I’m going to do a little Torah study after this, although it’s late. Unfortunately, I spent most of the day struggling with exhaustion and some of the evening with a mild, but persistent headache.
Sometimes (often) I wonder what it would be like to be a “normal” person, with no autism, mental health issues, a full-time job and so on. I used to think about it mainly in terms of marriage; now I have a wife who loves and accepts me, I think about it in terms of the Jewish community, being accepted and having friends, but also performing mitzvot (commandments) “properly.”
When I speak to my rabbi mentor, he always seems positive about my religious life, even when (as at the moment), I feel like I’m giving up on aspects of observances because I can’t cope practically and emotionally. I can’t work out if he really thinks I’m doing well or if he’s just trying to keep me Jewishly engaged and positive. He’s an honest person, so I imagine he really thinks it, but it’s hard to believe. Similarly, I never worked out if he said I should be open to dating less-frum (religious Jewish) women because he thinks that, as a general rule, frum people should be open to atypical relationships or because I found so few frum women willing to go out with me that I needed to broaden my search. I wouldn’t have dated E if he hadn’t said that, so it’s good whatever the reason, but I wonder about it sometimes. Likewise, when my Dad tells me he’s proud of me, I can’t help but wonder if he’s proud of me in the abstract, that I have done things that are inherently worthwhile or if he’s proud because I have a lot of “issues” yet I have done stuff which, although trivial to a “normal” person (e.g. my sister) are challenging to me. I guess I feel a degree of shame in not being “normal.”
Related, I’ve been thinking a lot about alexithymia (not being able to understand and process my own emotions) and Judaism. There are lots of emotions that I am supposed to feel as a Jew, for example, love and reverence of God, love of other people, joy on Yom Tov (festivals). I find all this very hard as I’m often not aware of these emotions and don’t know how to inspire them in myself. Now I wonder if I do feel some of them and just don’t know it. There are mental health and autistic challenges for me with most Yom Tovim, so I am probably not feeling joy there so much, but it occurs to me that if I can “prove” to myself that I love my family by looking at what I’m willing to sacrifice for them and how anxious I am about losing them, the same applies to God and Judaism. I have sacrificed a huge amount for them and don’t want to lose them I know it’s not from fear as it doesn’t feel like the anxiety I used to have with religious OCD. That would seem to indicate that it’s from love.
Other related thoughts I’ve had today: I had a headache, which reminded me of something I read in the book Calling Out to You, about Judaism and depression and anxiety, that if you had a headache, you would not pressure yourself to do your regular Jewish activities, so you shouldn’t pressure yourself if you have depression or anxiety. I feel a bit like I have a “permanent headache” in the form of autism, at least in some respects and maybe I shouldn’t pressure myself to behave like a neurotypical person.
E and I were speaking about Chabad and their kiruv (outreach) philosophy of acceptance of all Jews wherever they are religiously. While some kiruv organisations are very focused on getting people to commit to a fully observant Orthodox life, Chabad have an attitude of “every mitzvah counts.” They focus on getting people to do just one mitzvah regardless of whether they’re going to go on to do more mitzvot. Maybe I need to focus on one mitzvah at a time and just do what I can.
I still haven’t had my sleep study results and I don’t know who to chase. NHS, etc, etc.
Wedding Anxiety, Religious Anxiety
I feel quite stressed and anxious, partly about the wedding, partly aware that E is struggling with things at the moment and I can’t help her. I’ve contemplated jumping on a plane just to give her a hug, but she said not to, and, for reasons I won’t go into here, it might actually make her situation worse, in practical terms, if I did, so I just have to wait. It’s very frustrating. I guess now I know how my parents felt for years when I was struggling with depression/burnout and they couldn’t do anything for me.
Once I get to that point, my thoughts start to spiral out of control worrying about how two people with so many diagnosed and suspected neurodivergence/mental illness “issues” between them, and such an insecure income as a result, can actually be happy, particularly when my parents aren’t able to help any more, practically and financially. At least we’ll be together, that counts for a lot. It’s scary, though.
Other than wedding/marriage/future stuff, I’m worried about Purim, the minor Jewish festival coming up in about a week and a half. I’m actually more worried about Purim than Pesach at the moment. Pesach is a more major festival a month later that triggered my religious OCD much more than Purim in the past, but I think that’s under control now. Purim triggers a lot of things, like OCD, social anxiety, perhaps autistic sensory issues, social overwhelm and so on as well as feeling like a loser for having no (local) friends. Ugh.
In terms of the last few days… on Thursday I had to do the Very Scary Task at work. I think I’m getting better at it, but it’s still hard and I get flustered and confused on the phone, especially if J isn’t around. On the plus side, I did get to go out to the Post Office and do some shopping which at least broke the day up a bit. I spent the afternoon doing a very boring printing and scanning job that is not yet finished. After work I went to Sainsbury’s and was so distracted and confused that I nearly left my food behind. I also collected my glasses with new lenses and left my spare pair so the new lens prescription can be put in them. I have to remember to wear the spares on our wedding day otherwise my glasses will turn tinted from the sunlight/camera flash (the everyday glasses have reaction lenses, but the spares don’t).
I was exhausted again on Friday. I probably would have been OK if I could have had a mental health day (autism day?), but even minor Shabbat (Sabbath) preparation finishes me off on Fridays recently. I felt too exhausted to go to shul (synagogue) again, which upset me a bit. I feel as if I’m drifting away from the Jewish community, while still believing and practising Judaism privately, and the Purim anxiety is a part of this. I don’t want to do it, but it’s what my mental/autistic health seems to demand right now and I feel that if I go away, the community won’t come after me they way they would for someone more involved and connected. I’ve never really felt fully a part of the community, except maybe for two or three years in the shul I grew up in, before we moved. Three years out of nearly forty is not a good record.
My uncle is here for the weekend. We had a good time at dinner, but there are aspects of the family dynamic that I find uncomfortable. I mentioned the other day that E and Nephew joining the family has changed the family dynamic, which it has, but there’s been another, more subtle, shift for a decade or more that I don’t feel comfortable with, but it’s not really my place to do anything about it. The problem is that I get sucked in and say things that I later regret. Speaking of which, I said something completely different (unrelated to family stuff) that I immediately regretted for religious reasons. I am trying not to beat myself up about it and accept it was a slip of the tongue, but I expect myself to be perfect.
I had a headache that got bad enough that I took tablets for it on Shabbat (the rules about taking medication for minor ailments on Shabbat are complicated. In the past I was very strict with myself; now, as in other things, I’m trying to tell myself that sometimes it’s more religious to be more lenient. It’s hard, though). I lay on the bed for a bit after dinner because of the headache. Lying down made it worse, but I propped myself up by the headboard and covered myself with my weighted blanket and adjusted the Shabbat lamp so there was only a little light.
After a while the headache went and I wanted to do some Torah study before it got too late. Like last week, as it was late, I went for depth over length of time, studying some Talmud (reviewing the page I’m on) and a chapter of Shoftim (Judges). It took about forty minutes in total. After that, I read for fun for a bit, finishing Greenmantle and starting Harry Potter and the Prisoner of Azkaban before going to bed.
Today was more of the same, really, until Shabbat ended and the anxieties I mentioned above kicked in.
I worry that I over-shared on the Orthodox Conundrum blog Facebook group on Friday. There was a thread about Orthodox men not wanting to date women who study more Talmud than them, or better than them, and I asked if the reverse is also true, wondering if I got set up on so few dates in the Orthodox community because I didn’t go to yeshivah (rabbinical seminary). To be fair, there were plenty of other plausible explanations for my lack of dates, but, as you know, I’m paranoid that my failure to go to yeshivah or to study Talmud at a high level marks me as a “bad (frum/religious) Jew” even though I know that the idea of universal male yeshivah study or Talmud study for all but an elite is a product of not much more than the last century, not the entirety of Jewish history.
Perhaps relatedly, on Friday night/Saturday morning, I dreamt I was back in school. I had done my BA and MA, but, somehow, not my A-levels, so I had to come back to do them, but I was in the middle of burnout again and felt I couldn’t finish the course. Of course, I probably did have burnout when I did my A-levels, but it was mild compared with the burnouts during my BA and MA. I think the dream is about me trying to come to terms with not being the academic success that my achievements at school led me to think I would be, particularly in terms of secular academia, but also in terms of the frum community, where so many people seem to be able to study Talmud at a much higher level than me and where this seems to count more than other types of religious knowledge and perhaps even than being a good person in some circles.
It turned out that I did not copy all my music (or my non-classical music) to my phone. I need to delete some phone apps and try again…
Family Dynamics, Alexithymia and Autism as Disability
My posts have got short. I’m very busy with wedding stuff and autistic exhaustion, but I do want to write regularly, even if I can only write a fraction of what’s on my mind.
I had a mental health day, or half day (after volunteering) yesterday, but I feel autistically exhausted today. I don’t know if that’s from volunteering or something else (the weekend?). It was a struggle to do anything. I woke up early with a slight headache, stayed in bed because of the headache, slept a couple of hours longer, woke up still with the headache, got up to take some painkillers, only for the headache to go immediately. Then it would come back for a few seconds and go again during the day. This has happened a couple of times recently and I’m not sure why it happens or if it’s related to autistic exhaustion.
I had therapy and felt a bit better afterwards, but I got side-tracked looking at medical data online (COVID deaths vs. flu/pneumonia). I went for a walk and scanned some documents needed for my religious wedding and entered them on the website, but didn’t do a lot more. I did about twenty minutes of Torah study and had a Zoom call with E and another potential wedding photographer, but that was it. I feel somewhat frustrated.
In therapy we spoke mainly about wedding anxiety, wedding-related emotions that I can’t notice, understand or process well due to alexithymia and some family stuff. Just as we were finishing on this, it suddenly hit me that the family dynamic has completely changed in the last year due to Mum’s heart attack, E and my civil wedding and upcoming religious wedding and the birth of Nephew. Frustratingly, we didn’t have time to discuss this in depth, so it will have to wait until the next session in a fortnight. I was aware of some change, but I realise now it’s been a very big change and is still ongoing. I find this hard and not just because, autistically, I dislike change.
It just occurs to me that the biggest argument in favour of my autism being, at least in part, a disability rather than a difference, is alexithymia. Being unable to register or understand my own feelings is not something that is socially induced and could be solved with reasonable adjustments. This is something in my own head that prevents me being fully me or at least fully aware of myself. No one is doing it to me, it’s just the way I am. I experience it as being disabling, not a socially-imposed difficulty.
Facebook is awful, but I don’t have time to explain why.
Thief of Joy
It’s been a tough twenty-four hours. Last week I felt I was getting my life on track, but I worry that I’m too prone to autistic exhaustion to earn more or to cope with children. Last night I was looking at the last twenty years, dominated by depression and/or autistic burnout. Sometimes it feels that I have nothing to show for that period until E arrived (OK, two degrees that have not got me far). I have to believe that there is meaning in those years or that I can give them meaning. That I met E in the end and before then I grew resilience and empathy, but it’s hard to feel that sometimes, particularly as I feel I’ve suffered “autistic regression,” essentially losing skills as a result of burnout.
These thoughts were inspired by seeing the blog of someone autistic who I felt was doing a lot better than me at life. Looking at the post again today, that’s not necessarily the case, but either way I failed at not comparing myself to other people, even though I’m trying to work on that right now. And, yes, there are autistic people worse off than me and not just severe autistic ones. On the autism forum it seems that, of relationship, children and career, people rarely have two let alone all three and some don’t have any. I have a relationship and while I don’t have a career I at least have a part-time job. I still hope to have children (and maybe a career). Of course, many people join the forum because they’re struggling, so that probably creates a bias in favour of less successful people.
I do feel I struggle with Orthodox Judaism placing a lot of emphasis on doing things, learning, growing as a person. There is a whole concept of bittul zman (wasting time) or bittul Torah (wasting time that could specifically be dedicated to Torah study) to show that we should constantly be thinking about using our time productively. It’s hard to feel that I can or maybe should take things slower. Maybe this is a question to ask the rabbi I emailed a while back (from the helpline of rabbis trained in mental health).
Today was stressful: train problems on the way in, a lot of noise at work, boring work (although I could at least listen to a podcast today) and an unexpected visit by our treasurer, which put me on edge at having someone else in the office, especially as he had no real reason to be there and was just killing time. I was still exhausted and stressed from yesterday and the noise, boredom and unexpected peopling made things worse and really put me on edge. I didn’t stay for Minchah (Afternoon Prayers), but felt bad leaving as people were coming in (fifteen minutes early!).
I also worry that, if I was wearing noise-cancelling headphones, as I would like, I would have missed an important announcement about the train problems this morning and could have ended up halfway to Bank before I realised I was on the wrong branch of the Northern Line (the train switched lines).
Emotionally, I have had some Purim anxiety today. Purim is the Jewish festival in two weeks’ time and it is not autism-friendly at all (as well as also being an OCD trigger risk for me). Maybe that’s something to ask the mental health rabbi too.
I do frequently feel stressed and overwhelmed at the moment from wedding planning. I feel like I’m struggling with alexithymia regarding it. I have depression from work and anxiety from the wedding as negative emotions always make themselves felt, but it’s hard to tune in to the excitement especially as it’s so hard being away from E. I need to try to push the anxiety and impatience to excitement, not depression, but I don’t really know how.
You Will Own Nothing and You Will Be Happy
On Friday I was too exhausted to go to shul. I had the headrush, light-headed, feeling I’ve lately associated with autistic exhaustion, although I worry that it might be a symptom of something else. I also found that my vision was very focused on the area in front of me and I had less clear peripheral vision, as with anxiety. I felt like this intermittently all evening.
I got through dinner. I was too tired to study the Talmud or The Guide for the Perplexed, so I read a chapter of Sefer Shoftim (The Book of Judges) and the corresponding chapter in Rabbi Hattin’s book on it. That still took nearly an hour. I read Greenmantle for a while as I wasn’t tired and went to bed late.
I got up a little earlier than usual for Shabbat, but still felt tired. I went back to bed after lunch and slept properly, rather than dozing lightly as I had done throughout the winter. This was because Shabbat finishes a bit later now, so I had time to sleep. I did about twenty minutes of Talmud study, which wasn’t much in terms of time, but I reviewed the page I started last week and understood it somewhat better, although still not perfectly.
After Shabbat, I deleted 2,500 photos and videos on my phone to make room for music. Most were from WhatsApp, a lot from my old shul, which used WhatsApp a lot, some from other organisations. I kept various family photos, but ditched most of the rest. I did this because I tried to transfer music from iTunes to my phone a while back and failed, which I assumed was due to lack of memory. I’m worried that my iPod will die soon and I need a contingency plan for listening to music. I would also like to move to a music storage/playing device that would allow me to use cordless and/or noise cancelling earphones, cordless because headphones have a low life expectancy for me which I assume is because of how I treat the cord and noise cancelling because it will make my commute less painful. New iPods are not for sale any more, as far as I know, and I don’t like buying second-hand electronic devices, certainly not expensive ones.
I copied some music across to my phone, but I ran out of memory about halfway through. I’ve got a lot of classical music copied that I rarely listen to that I have since deleted to make more room, but it’s barely affected the phone’s memory. I’m going to have to delete most of the music soon to get back the phone’s memory. I do buy music quite regularly, so I really need more. Also, the phone music app isn’t particularly user friendly and I can’t work out how to find particular songs easily, play whole albums (which I do a lot) or play a playlist (I’m not sure that these even copied over from iTunes). Other Android music playing apps feature adverts.
The options seem to be (1) buy more memory (possible); (2) buy an iPhone so I can use iTunes directly (no, I’m not rich enough); or (3) come into the 2020s and subscribe to a streaming service. It seems ridiculous that after having bought so much music, I’m effectively going to have to rent it too if I want to listen outside the house. I like owning things, not because I’m materialistic, but because I like my things to be where I left them and not suddenly be deleted because it’s decided that they’re unfashionable (as many of my tastes are) or politically incorrect (more relevant to my DVDs and books than music, but still possible). I still remember the video streaming deletions of the summer of 2020, loads of classic film and TV suddenly verboten on grounds of racism. I think most were restored after protests, but it’s a disturbing precedent.
This prompted a whole train of thought about “You will own nothing and you will be happy.” Googling, it seems that this is not an actual mantra of Davos neoliberals, as is sometimes claimed by the far-right and far-left, but did come from a discussion paper for the World Economic Forum. The actual title is “Welcome To 2030: I Own Nothing, Have No Privacy And Life Has Never Been Better”. The paper is here, if you’re curious. The paper is supposed to sound utopian, albeit with some worries; I think it’s flipping terrifying, in the same way that most utopias are terrifying, from Utopia to The Shape of Things to Come to the deliberately ambiguous utopia/dystopia of Brave New World. I was glad that I had guessed some of it for my novel, but I will certainly give the article a re-read and comb it for new ideas (when I get time to write, sigh).
I didn’t do much Torah study because of this, but I did join in a “silly” thread on the autism forum, which was supposed to be for joking around and letting off steam, but did lead to people sharing some heavy stuff in a supportive environment, so I’m glad I participated. I’m in a fairly good place right now, but it’s good to offer support to others.
Getting Better All the Time
I got up about 10.30am today, which was earlier than I expected, as I thought I would be exhausted after yesterday. However, I wasted what I had of the morning as I was too exhausted for anything other than internet stuff. I’m not sure if I’m going to go to shul (synagogue). I want to and I don’t feel exhausted to the point of illness, as I have on recent Fridays, but I do still feel exhausted, am getting the “headrush”-type feeling I associate with autistic exhaustion and I am at least trying to notice the signals my body is sending me and not try to push through them in the belief that “doing something” is always better than “doing nothing” (relaxing/reading/watching TV or literally just lying still and recuperating from the noise and busyness of the world).
I had a Pesach anxiety dream last night, but it was a “can we make Pesach in time?” dream, not a Pesach OCD dream, which was good.
It feels like my life is getting better lately, but not uniformly. I don’t think any of it is getting worse.
Getting fully married soon is good. Wedding planning is eating up a lot of energy, with less for cooking and housework and none for writing, but I can live with that for a few more months.
Volunteering has become my main social activity. I don’t say much, but do occasionally make a funny remark and people laugh. It’s good being around people. It’s slightly awkward that they’re all twenty years or more older than me and retired (hence time for volunteering), but it means I’m not comparing myself to them. I don’t expect people of my parents’ generation to be living lives like mine. I often get on better with older people anyway.
Work is difficult, but bearable and at least my boss seems to tolerate my mistakes. I do worry that he secretly thinks I’m an idiot, but I’m trying not to care.
I’m trying to give myself more breaks and more relaxation time (at home, not yet at work), as indicated by my remarks about possibly missing shul today. It’s hard. As I said in a comment today on Paula’s blog, since my teenage years, I’ve found it hard to set aside more than half an hour or so at a time for reading fiction or TV; it feels too much like “wasting” time that should be spent on something “productive.” Yet not relaxing means I can sucked into hours of internet procrastination instead (much of it designed to make me feel angry and threatened), because of the addictive “junk food” nature of internet links (“Just one more”).
I have a lot to do still regarding proofreading. I want to set up profiles on more sites and chase the person I worked for to get a review, although I think it’s probably too late (I’ve been focused on the wedding). I know I have a lot to do to build my brand before this becomes a significant revenue stream and it does seem that it will take a long time to do, maybe never.
I am accepting that my novel(s) may not ever get published. I would like to write more despite this, even if it’s just for E. I still need to type up notes for my new novel, plus research and actually write the thing. Unfortunately, this all takes time, time I don’t currently have. However, I enjoy just thinking about it, so that’s good!
I feel like I fit in a bit better on the autism forum and am connecting with some people, although it can be hard, especially when I try not spend too long on there. I do wonder how some people can say that they feel an affinity with all autistics and no allistics, which seems very strange and stereotyping (and possibly an example of autistic black and white thinking). I find autistics, even high-functioning ones, to be as varied in personality and interests as any other cross-section of the population, albeit with certain traits or interests that come up perhaps a bit more than in general society.
There is sometimes drama on the forum, but I try to stay out of it. It can be hard to work out what I should post there and what on my blog. I definitely feel that the Jewish aspect of my autism is not really recognised there and there is still some Impostor Syndrome regarding traits that others have that I don’t, whether it’s the fact that I have some ability to make small talk (even though I don’t like it and it’s draining) or the fact that I increasingly think I like reasonably bright light and strong contrasts rather than preferring muted lights as most autistics prefer. Again, the fact that many people on the forum assume their experience is universal for autistics is probably not surprising when you consider that difficulty with perspective-taking is a classic autistic trait.
Religious life is still hard. Going to shul is draining and I don’t always have kavannah (concentrate) well there. Davening (praying) at home can actually be much better on that score. Shacharit (Morning Prayers) are a lost cause, but the other services can be better, although I’ve got a long way still to go.
I am doing quite a bit of Torah study most days, and fairly difficult stuff at the moment, not fluff (Talmud, The Guide for the Perplexed, Aviva Gottleib Zornberg’s Torah essays which combine traditional Jewish thought with contemporary literary criticism, philosophy and psychology). Even so, I feel like I should do more, although maybe I don’t need to.
I am also aware that I’m going to have to compromise religiously with E when we get married, but I’m trying to keep in perspective the fact that the compromises will largely be on chumrot (stringencies) or, if not, will be for the purpose of shalom bayit (domestic harmony), which is a legitimate halakhic (Jewish legal) concern that can counter-balance some laws, even some biblical ones. I also think that E and I will grow together religiously in ways that I can’t manage alone e.g. I think she will help me get back to going to shul on Shabbat mornings and take more of a role in the community. I am also trying to stay aware that I can legitimately make compromises with myself over religious engagement because of my autism e.g. less shul attendance, pressuring myself less to daven, or daven with kavannah or study Torah when exhausted. I find it hard not to strictly “follow the rules,” (which may not always be actual halakhah, but the customs or even whims of the community) which may be another autistic thing and not halakhically necessary.
I do worry a bit about how E and I will cope if we have children, as we would like, given our respective “issues,” but I think first we need to see how we cope as a couple!
I do still have some Impostor Syndrome in different areas, particularly with my Judaism, but also feeling I’m not autistic “enough” or not coping with life “enough,” but I guess things are getting better overall.
The HMRC Strikes Back
I got to bed late again last night, unsurprisingly, but unfortunately. I woke up early this morning, but had a headache and stayed in bed. I didn’t even get up to take anything. I’m beginning to wonder if my headaches are some kind of autistic exhaustion symptom, although it will be hard to tell until I get my new glasses. I had weird dreams, including a Star Wars: The Empire Strikes Back dream (it’s usually just Doctor Who) and the anxiety dream where I forget it’s Shabbat (the Sabbath) and do something inappropriate (although in this case I actually knew it was Shabbat, but forgot what I was doing was breaking Shabbat). I eventually woke up with no headache, but the sheets a crumpled mess.
I don’t know how long I would have stayed in bed, but I got up when the phone rang. It was the United Synagogue Marriage Authorisation Department checking in with our progress. At least I have progress to mention this time! I said I would be trying to fill in the online forms in the next few days.
I felt I partially dodged an autistic exhaustion bullet by sleeping so long. I felt sluggish and a bit out of it, but not incredibly exhausted. However, I then checked my emails and discovered a message from HMRC (the taxman) saying I owed £300 because my tax return is overdue. It was initially unclear what this was for, but eventually it seemed like it was for the 2020-2021 tax year, where I didn’t submit a tax return because I was unemployed for most of the year and didn’t earn enough to pay tax.
I felt pretty awful, stressed, overloaded, unable to function, struggling with wedding and tax stuff and generally stupid and useless. However, I made myself phone HMRC. I was reasonably sure by this stage that they were asking for a tax return for a year when I didn’t earn enough money to pay tax. I was on hold for about forty-five minutes. The awful hold music stopped me doing anything else useful in that time and just made me feel awful from an autistic exhaustion/focus point of view. I don’t know why they put on awful repetitive music when you’re on hold. It just plays a bar or two and then loops. Why not play real music? Perhaps there would be copyright issues.
I did eventually get through to a human being and confirmed this was for a year when I didn’t earn enough to need to pay tax. He said I didn’t need to submit a return for that year and that I wouldn’t have to pay the £300. I might even get a refund of the £100 I paid last year, if it was about the same tax return, although I’m not sure which tax year that was for. He’s also confirmed that I’m registered PAYE (taxed at source by my employer) now, so I shouldn’t have to worry about this again unless I start earning a significant amount from proofreading (if only).
I was left feeling relieved, but also very stressed and exhausted and worried about coping with the wedding photographer Zoom calls in the evening. I also had not done anything useful all day other than that phone call.
I did a few minutes of Torah study, but ran out of time before the Zoom calls. The second photographer was nice enough, but not right for us. However, the first photographer was as good as the two we spoke to yesterday, so this will be a tough decision. We want to look at some of their galleries, but the choice might be down to price or photograph package offered.
I’m not sure what I’m going to do with the evening. I need to eat dinner and to do something relaxing, but I’m not sure what I’ll do after that.
My parents spent their wedding anniversary today at a levyoyah (funeral) for my Mum’s cousin’s husband. I didn’t really know him, although I imagine I met him at some point. My Mum’s cousin is a lot older than she is (there was a very big age gap between my great-uncle and my grandpa), but I guess it’s worrying to realise that my parents are now the elder generation, not the generation below.
My parents did go to the theatre in the evening, so they did get some anniversary celebration.
I posted this on the autism forum:
I wondered if anyone else here is hypo-sensitive to light rather than hyper-sensitive? I’ve seen various comments here about “If the world was more autistic-friendly, all the lights would be muted,” but I’m slowly realising that I’m the reverse. While I like muted light when watching TV and getting ready for bed, muted light the rest of the time makes me feel sleepy (although I don’t like bright flashing lights). My work office, for example, has terrible lighting and I’m sure it affects my efficiency. I like quite sharp, bright light or clear contrasts. At university, when working after sunset, I would turn all the lights off in the room and work by the light of a bright desk light, so I could focus on my desk and my work and not see the rest of the room and get distracted. I liked that contrast. I feel slightly weird as other autistics all seem to be the opposite way, although I know that for anything most autistics experience as hyper-sensitivity, some will experience hypo-sensitivity. I guess it fuels the “I’m not really autistic” impostor syndrome.
Some people did say they have similar reactions to dim light, so I guess it was a success on that score, but I do feel that I still struggle with the “I’m not autistic enough” thoughts (whatever “enough” is) . It’s similar to the fact that I still have “I don’t like being autistic/I don’t think autism is a superpower” thoughts and wondering where I fit in to an autism community that seems autism as a positive and sees the negatives as stemming from society.
It’s been a quiet few days, so I haven’t posted. I had a headache on and off on Friday, not a bad one, but a persistent one despite medication. That contributed to my not going to shul (synagogue) in the evening, combined with the usual end of week exhaustion.
Shabbat (the Sabbath) was quiet. I did some difficult religious study: a bit more of The Guide for the Perplexed, focusing on an argument for the existence of God (largely irrelevant now, as based on an Aristotlean worldview that is no longer held); a complex Talmudic section that I will have to go over again to have any kind of chance of understanding it; and an interesting, if depressing, article I had printed out from Rabbi Jonny Solomon about the lack of interiority and spirituality in the Modern Orthodox community.
The fire alarm went off on Saturday morning. Rather disturbingly, even though it’s right outside our rooms, neither Mum nor I woke up, although I had a weird dream about the fire alarm going off. Dad at least woke up. Still, even though I knew I’m a heavy sleeper, it’s disturbing that it failed to wake us. What if there had been a real fire? I’ve never been so worried about not being woke…
I didn’t get much response on the piece I posted on the autism forum about being Jewish and autistic, just two comments, plus the first commenter responded to the second one. There was one interesting comment where the commenter said they’re autistic, queer and blind and that while there are a lot of queer people in the autistic community, they feel their blindness separates them from everyone else in a fundamental way and suggested that’s similar to how I feel about being Jewish. It’s not a perfect analogy (I don’t see my Judaism as a disability), but I suspect there’s a lot of truth to it in terms of feeling fundamentally different and unknown, even unknowable, in a community that prides itself on its tolerance. I guess it feels that some things, while not intolerable, are inconceivable to outsiders.
On the plus side, a couple of people friended me on the autism site, including the person I tried to friend weeks ago.
I woke up at 9.45am today (Sunday) and got up rather than going back to sleep, mostly because I was too hungry to sleep. It was good to get up a bit earlier, even if I spent a long time online before getting dressed. I feel I wasted the day, although I did manage to do several things, and I was fighting against low mood/depressive and anxious feelings for much of the time.
I did some Torah study. Unfortunately, it’s a very difficult parsha (portion) this week, mostly legal, with complicated and unclear syntax in many places and, to make matters worse, lots of places where Jewish law rules completely differently to the apparent literal meaning of the text, while still basing itself on it. I also managed to quickly put together a “Save the date” note on Canva (I hope to send it out before bed) and went for a walk. I didn’t manage anything else, although I would have liked to have done so, but maybe that’s enough for a depressed and anxious day.
E set up an online countdown timer to our wedding. I look at it quite a lot. I’m glad we’re down to double digits in terms of days now, but ninety-eight days is still nearly three months. I miss E a lot. She’s hoping to get some idea of when she’s coming to the UK soon. It will be good when we’re in the same house, even if we aren’t sharing a bedroom/bed.
I’ve managed to fix the wedding Dalek, at least for now, but I worry it’s going to be too fragile to take to the wedding. Sigh.
I posted the following on the autism forum.
I struggle to advocate for myself in the workplace. I have to deal with things like using multiple documents at once or doing things with multiple steps which is hard with executive functioning issues. I have lists of what to do, but I still make mistakes sometimes, not least because I don’t always remember to look at the lists. I also have to make and take phone calls occasionally. Periodically, there are days when I have to make a lot of important and very difficult phone calls, which means dealing with social anxiety, spoken word processing issues, telephone issues and problems talking to people and remembering the correct responses or even problem solving on the spot. That doesn’t happen too often, thankfully, but it did last week.
I feel uncomfortable with this aspect of the job, but I’ve had long periods of unemployment and don’t want to risk losing this job, which in other ways is good (relatively high pay considering the hours and workload; a very understanding and laid-back boss). When I try to think of possible adjustments, autistic rigidity kicks in and I feel like there are no adjustments I can ask for that would be both reasonable and useful. I don’t feel that asking not to use the phone is not  reasonable, given my contract. I actually don’t know what reasonable adjustments I would like, I just know that I feel a certain level of depression and anxiety in the workplace, not to mention feelings of inadequacy and overwhelm. I just feel I have to deal with it somehow or lose the job.
I would be grateful for any possible suggestions.
 I actually missed out the crucial word “not” in the forum post and couldn’t work out how to edit it! I had to add a comment to clarify.
Autistic Exhaustion in the Frum Community
I feel like I’m on the brink of autistic exhaustion today. I got up at about 10.40am even though I felt really tired, because I knew the Tesco order was about to come and I had to be ready. It’s supposed to come between 11am and 12pm, but it always comes fifteen or twenty minutes early. I don’ t know why. Perhaps there are a lot of other people around here who have an order between 10am and 11am every week. Bending down a lot to unpack the crates made me feel ill from low blood pressure. I had breakfast, but went back to bed for a ten or fifteen minutes afterwards as I still felt bad. I’m not sure if it was shifting into autistic exhaustion by this stage, as one of the weird symptoms I get of that is a ‘head rush’-type feeling like getting up too fast with low blood pressure. By lunchtime, I was still feeling very drained and struggling to do anything. Maybe I did more yesterday than I thought, or maybe it just took more out of me because so much of it was social (volunteering, wedding planning Zoom call). I had to go for an eye test (see below) and didn’t do much else. I had some wedding conversations with my parents and with E and did some Torah study and one or two small chores, but that was about it.
My eye test was OK. My eyes are healthy, but I need new lenses, which might make The Guide for the Perplexed easier to read (if not understand). In retrospect, my eyes probably have been strained a bit recently, but I put it down to not polishing my glasses efficiently, which is actually a really weird thing to think.
I feel like I’ve been a bit spendthrift recently. Over the last few days, aside from wedding Daleks, I’ve bought the CD The Kinks are the Village Green Preservation Society (I’m getting into The Kinks at the moment. I don’t think they were better than The Beatles, but I think they did some things better than The Beatles), the DVD of the 1960s BBC science fiction thriller Undermind (as part of my apparent attempt to watch all surviving British TV science fiction of the 50s, 60s and 70s), the final Harry Potter book and a large-format Doctor Who coffee table-type book. I didn’t spend a lot of money; the most expensive were Harry Potter (£4) and Undermind (a few pence more), but I feel vaguely materialistic, and I probably shouldn’t be buying books when I have so many still to read.
When I got home, I discovered I had been under-charged for the Doctor Who book. Most hardbacks in the charity shop are £2.50, but this had a sticker saying it was £4. Neither I nor the woman serving me noticed this, as the sticker had been stuck, upside-down, on the back, instead of the front as is normal. I’m not sure what to do. It’s only £1.50, and usually I wouldn’t care, but it was a charity shop and it feels vaguely like robbing the poor. I feel I should make an extra donation, but I don’t know that I would have bought the book if I knew it was £4 and I don’t want to guilt myself into paying it.
I posted this on a Jewish autistic Facebook group:
This is really a sequel to [redacted] post about being hard on ourselves from a couple of days ago. I beat myself up a LOT. Today I am struggling with autistic exhaustion and don’t really want to do much. Yesterday wasn’t particularly busy, but did feature quite a lot of social interactions and that is probably what exhausted me. But I find it hard to give myself a break about it, just adding to the exhaustion by piling on self-blame. I often struggle with autistic exhaustion and it holds me back from a lot of things, as do social anxiety and difficulty ‘peopling.’
I find I beat myself up most about religious stuff. I criticise myself for not doing enough Torah study, and not enough Talmud in particular. I criticise myself for mostly davening at home and davening a very cut down Shacharit, even though these have contributed to a significant improvement in my concentration while davening. I have a general sense of being a Bad Jew, which I guess comes partly from feeling I missed so many stereotypical frum life experiences and never having really fitted into a frum community as well as these autistic issues.
The other week I emailed the Maaglei Nefesh support email. (They’re an organisation that provides support about mental health-related halakhic issues from rabbis with mental health training.) I said that I know autism isn’t a mental illness, but I don’t know where to turn. I said more or less what I said here. I was told that if I feel exhausted or overwhelmed, then I shouldn’t feel obliged to go to shul or do other social-related mitzvot, and I shouldn’t feel pressured to do mitzvot generally that I feel my autism prevents me from doing. I found this helpful, but as the exemptions mostly depended on feeling exhausted or overwhelmed, I just know I’ll end up thinking “am I feeling exhausted/overwhelmed *enough* to consider myself exempt?” To be fair, the rabbi said I could email back with more specific questions, which I may do, but I’m struggling to formulate anything more specific than a near-constant feeling of exhaustion and overwhelm.
Does this resonate with anyone? Please tell me I’m not alone!
I got a couple of responses, which is good, although no one really has a solution. At least I know I’m not alone…
My Autistic Self is Pleased That This Post is Exactly 888 Words Long (Excluding This Title)
Dad’s seventieth birthday party seemed to go well. There were eleven adults, plus Nephew. Aside from Sister and Brother-in-law (and Nephew), the guests were a mixture of extended family and Dad’s oldest friends. We ended up sitting with family at one end and friends at the other, which was easier for me. Even so, I struggled to say much or to feel comfortable, even to make eye contact. I walked Nephew for a while and was popular with Sister and BIL for getting him to sleep. I also tried to wind him, without much success, although he seems to be a difficult baby to wind in general.
The food was excellent and I probably ate too much. The party went on for a long time, though, about four and a half hours. I’m pretty exhausted now, and still depressed. I need to watch that and hope it’s not a result of reducing medication. I would hate to think that I have to be on clomipramine forever. I did OK, but not great at not envying Sister and Brother-in-law. My Dad pointed out the photo of E and me taken at our post-civil wedding party to his friends. Normally, I would cringe, but I was glad that it proved that E exists outside my imagination.
I went for a brisk walk after the party, but I don’t feel able to do much else. I started to watch James Bond (Live and Let Die), but timed it badly and only watched the first half. I’m not sure if I will be able to watch the second half before I go to bed as I need to be up early for work. I feel vaguely guilty about watching Live and Let Die yet again (it’s one of my favourites), when there are other Bond films, let alone other films entirely, that I haven’t seen so much. But I needed something light and entertaining that I didn’t need to think about and, while it may be one of the most politically incorrect Bond films from a 2023 perspective (whatever that’s worth), I find it one of the most fun. The bus chase! The alligators! Even the title sequence: music by Paul McCartney and Wings and women whose heads turn to skulls – this terrified me as a child! Also, I could be wrong about this, but I think it’s the only Bond film where the title music appears diegetically (inside the fiction): listen to the singer when Bond and Felix are in the Fillet of Soul restaurant.
A comment I left on JYP’s blog:
As I said on a previous post, I haven’t really encountered “authentic self” in the workplace, but I work in a very small, old-fashioned and relatively frum workplace, so that may be why. I’ve encountered a lot about being your “authentic self” elsewhere, particularly in the autism community, where masking is seen as a uniformly bad thing.
I’m not sure that it’s possible or desirable to be your authentic self all the time; too much of our sense of self is contingent on where we are or who we are with. I don’t think there’s a Platonic Ideal Me that I should be showing all the time. That said, it would probably be better if I was more myself in some situations, although the workplace isn’t that high on my list.
I post this here as a reminder to myself that it’s one thing to try to be present in situations; it’s quite another to think that there is some pure Ideal Form Self that I have an obligation to manifest all the time. It’s OK to show different facets of my life with different people and in different situations.
I’m on several Facebook “Jewish and autistic” groups. They’re mostly dormant. sadly. One has someone who works as an autistic life coach who posts quite a bit promoting his workshops, which is slightly annoying, but there’s someone else who seems to be in all the groups who cross-posts stuff across all of them, almost always quasi-political stuff about ableism. Sometimes it just seems like she wants to be angry about things. I think a huge amount of social media, if not the internet as a whole, is taken up by people who want to be angry about things. On the whole, I prefer not to be angry, even if something is objectively wrong.
Today she reposted, across all the groups, something about not saying you give autistic children “extra” time, but rather “the time they need,” because saying you give them “extra” time implies they’re inferior and needy compared to neurotypical children (or something; I couldn’t read the whole post, which was long and aggressive). This may be true, but it sounded to me like searching for grievances. I’m just glad with parents who take their child’s autism seriously. Plus, as I’ve said before, I don’t really agree with the “autism is a difference, not a disability” model of autism. Some of my struggles are socially-constructed, but I don’t think they all are, and in a society where nearly 99% of people are allistic (not autistic), beyond a certain point, constructing things in a more autistic-friendly way will eventually make things unworkable for 99% of the population instead. In a democracy, 99% will beat 1% every time.
It’s All Here Tonight: Wedding, Baby, Work, Social Interactions, Judaism
Today was busy, so busy that it feels more like a couple of days than just one.
I went to volunteering in the morning. I tried to make myself speak to people a bit more. I’m not sure how well I did, but I did try to sit with them when we had coffee. Initially I had ended up at the other end of the table to everyone else, but after a while I moved to sit with the others. I also asked to be put on the WhatsApp group. And we were given nice thick, warm fleeces with the organisation’s logo on it. They’re bright purple (the organisation’s colour) which is a bit more vibrant than my usual taste, but they look nice and were very warm.
Afterwards, I went with my parents to a potential wedding venue nearby. It was more or less ideal. Nothing is ever perfect, but this was 99% perfect. As well as having the features we want, it’s relatively local, in an area I’m familiar with (I used to work down the road) which is probably good from an autistic point of view (dislike of the unknown), plus Sister and Brother-in-law live nearby, which will make it easier for them to bring Nephew. There are other venues that may be as good, but as E and I want to get married quickly, there doesn’t seem to be much point in looking at them, particularly as they would probably be not quite as good overall. So now the next step is to find a caterer that can do one of the dates we would like, then confirm with the rabbi and book the wedding!
A few emotional/autistic things that came out of this: I felt Mum and Dad drowned me out a bit when we were talking the site manager (I don’t know what her real title is, but that will do for here). I don’t mean that in a critical way, but they are quite loud personalities and I struggled to be heard, both literally and metaphorically. I needed their moral support there or I would have just frozen up, but it is my wedding and I felt that I wasn’t saying much. It doesn’t help that I notice they have a way of switching from “serious” to “joking” and back again in conversations of this kind that I just can’t do. I can do that with people I know well and trust, but not with a total stranger I only met ten minutes previously. I get stuck in “serious” then feel awkward when everyone else starts joking.
I am excited about the wedding, but I don’t think it shows much. When I was with my parents, I did feel a little excited, but it was only when I discussed it over Skype with E that I really felt it, although it probably still didn’t show much. I don’t know how much of that is just my personality and how much is alexithymia (difficulty feeling and understanding my own emotions). When we had the civil wedding last August, E’s mother filmed us when we were pronounced married. E starts bouncing up and down with a big smile on her face, whereas I look a bit confused and then hug her. When my cousin saw the video, she said I looked like I was happy, but didn’t know what to do, which is basically true. I don’t really know what to do with my emotions sometimes and it’s mostly the positive ones I struggle with, perhaps because I experience them less frequently or maybe because I feel there’s more social expectation around them.
After that we went to Sister and Brother-in-law’s house nearby. BIL was at work. We ate lunch and chatted to Sister for a bit, then she went to do work elsewhere in the house while we looked after Nephew. I held him a couple of times and helped feed and wind him (E thought it was funny when I said I winded him, so I guess it’s not an American usage. I mean to I tried to get him to burp). I ducked out of changing him this time. I am still a somewhat nervous uncle not used to babies, but I am becoming a bit more confident with him. I shook slightly while holding him, but not much, which is probably a sign of growing confidence. Nephew often has a somewhat startled expression, like he’s surprised to see the world’s still there, and is not entirely happy about it. Sister says at his age (not yet two months), he can’t focus on things that aren’t near his face. He did seem to make intense eye contact with me for a while, though.
Sister showed us the book she bought him. It’s made of fabric and is about farm animals. It reads, “Dog. Sheep. Cow,” with relevant pictures. I said I was impressed by the unexpected twist ending…
As if that wasn’t enough for one day, I have some paid proofreading work! It’s not much, and my rate is artificially low at the moment (well below minimum wage), but I hope that will generate reviews. It’s a slightly strange request for reasons that I don’t want to go into here, but it seems to be legitimate, but it’s left me with vague unease. I hope it really is legitimate.
A few days ago I emailed a rabbinic email helpline for people in the Orthodox Jewish community who have mental health issues. You can email a rabbi for advice on halakhah (Jewish law) as it pertains to mental health. The rabbis on the helpline have mental health training, unlike most communal rabbis. I asked about the way my autism leads to frequent exhaustion and difficulty in religious situations that are also social situations, and also how to cope with any religious obligations when feeling autistically exhausted. Autism isn’t a mental illness, but I felt out of other options for the kind of halakhic support I wanted.
I heard back from the helpline yesterday. The rabbi said that as autism is a spectrum and manifests in different people in different ways, so too halakhic adjustments can vary. From what I described, he felt I should not push myself to go to shul (synagogue) when exhausted or push myself to any social interaction related to a mitzvah (commandment) when I feel incapable and not to feel pressure regarding mitzvot generally. He said I could email him with more details of my situation for a more specific response. He also suggested davening (praying) at the same time as my shul even if I don’t feel able to go there, which is an idea I have heard before and tried to do during the first COVID lockdown, but drifted out of the habit of doing. I might try to go back to it, at least some times. The idea is that if you pray at the same time as the community, your prayer is still with them, even if you aren’t in the same building.
I’m not sure what I think of reply. It’s good that the rabbi told me that I shouldn’t force myself to do things that are just making me exhausted or burnt out. It’s not very specific, but I don’t really have very specific questions at the moment, just a general feeling of overwhelm at everything that’s expected of me religiously. I guess I feel that there’s a lot of grey area there inasmuch as it boils down to “Do what you feel able to do and don’t worry about the rest.” That’s probably my fault (“fault” isn’t the right word, but you know what I mean) because I didn’t ask very specific questions, but I worry it will just shift my worries from “Do I need to do more religiously?” to “Am I exhausted enough that I don’t need to do more religiously?” which might not be much of an improvement. I’m going to think about what they wrote and maybe write back if I can think of a more specific question.
Halfway There Day
Yesterday was my half-birthday, for those of you who take note of such things. I don’t really see any significance, but my oldest friend was born on 19 January and another friend on 20 January, so the date leaps out at me. I am now closer to my fortieth birthday than my thirty-ninth, which vaguely troubles me, although it shouldn’t.
I also worked out that if E and I get one of the two wedding dates we’re currently aiming at, both in the second half of May, we’re more or less halfway now between the civil wedding last August and the chuppah (religious wedding). We should have more of an idea this week if that’s a realistic date.
This week was the baby blessing week for Nephew. I couldn’t go in the end because of difficulty finding somewhere suitable to stay. I was OK home alone. I didn’t go to shul (synagogue) on Friday night because I felt too tired, which was a shame and vaguely troubling in terms of how frequently it seems to be happening. The house was cold and I have chapped hands again, but otherwise things were fine.
I did some Torah study: Talmud and The Guide to the Perplexed, which is currently full of stuff about the Aristotlean view of the universe as a series of living spheres, one inside the other, definitely not made of atoms and definitely not containing any vacuum. It’s interesting from a historical point of view, but this bit is not really relevant to modern day theology. Hopefully it will get back to more relevant stuff (from a contemporary perspective) soon.
I finished reading Dune yesterday. I intend to go on to the second book, Dune Messiah. It was a good book, but hard to get into, and weirdly structured.
I slept too long as usual, about twelve or thirteen hours at night. I still went back to bed after lunch today, more because I was cold than tired. I think I drifted into that state of mind between sleeping and wakefulness and was late for seudah (the third Shabbat meal).
It was a struggle to do things after Shabbat. It always is, as I feel lethargic, even at 5.30pm. I did manage to tidy up and do a bit of Torah study. I did a little novel planning too. I would have done more, but I had a headache for a while.
I tried to friend someone on the autism forum a while back. We have some things in common (librarians, Doctor Who fans). He didn’t respond to the friending and accompanying message, but has chatted with me on threads since then. He’s got other friends. Friending doesn’t really do anything other than allow direct messaging, but I do feel weirdly unliked from only having two friends, both people who are not there any more and who didn’t stay on the forum long. But I’m nervous about friending people (in general and after this). I wonder if the friend request didn’t go through properly to this person and if I should send it again, or if that would make things worse if he was deliberately not responding to me.
I also wonder if it’s worth friending other people. I would be open to making friends on the site, which would realistically only happen if I friended people, but I don’t see it as essential. Still, I wonder what to do. I feel really self-conscious about being the only (open) Jew on the site, but can’t stop mentioning it. I don’t think anyone is antisemitic, but a lot of people have funny ideas about Jews, particularly if they haven’t met any (which is feasible as Jews make up about a half of per cent of the UK population, largely concentrated in just a couple of cities).
Today was difficult in some ways, albeit mostly fairly minor ones. I spent most of the day wrestling with some thoughts that I’m not willing to share here yet, triggered (not in the trauma sense) by an Intimate Judaism podcast I am in the middle of listening to. Both the Intimate Judaism and Orthodox Conundrum podcasts and associated Facebook page seem to be talking a lot about the links between sex, relationships and identity in the Orthodox world (LGBT, older singles etc.). Both podcasts are run by Rabbi Scott Kahn, the former along with Dr Talli Rosenbaum. It’s interesting, and I have things to say, but I worry about saying too much, or the wrong thing for a public forum. I am vaguely thinking about messaging Rabbi Kahn, but part of me feels I share too much with strangers online, and that people don’t really want to hear my thoughts and I shouldn’t look for other people to validate my life choices.
I sent a question about autism to the email helpline for people who want to ask mental health-related questions to a rabbi/religious expert trained in mental health. Autism isn’t strictly a mental illness, but I feel I need some specialist help and don’t know where to turn, even if they just send me a different email address to write to. I just want to discuss how much I can “realistically” force myself to conform or, alternatively, allow myself to depart from communal standards in things like communal prayer, amount of religious study and so on, given the things I deal with on a daily basis (more on that below).
The psychiatrist has reduced my clomipramine, but she isn’t sure whether the dosage she prescribed is actually manufactured. She gave me an alternative in case I can’t get 25mg tablets, but it’s annoying to be put in the situation of having to check this out when the reason I waited a week to hear from her was because she wanted to check this!
The main struggle today was with mistakes at work. I made quite a few, just when I was hoping I was getting the hang of things again (you may remember I periodically feel like this, then make a load more mistakes).
Yesterday, when I was doing proofreading at home, I spotted and corrected a number of very minor mistakes immediately (in text I hadn’t written). Today, in the office, I made loads of mistakes, both in written text and in terms of entering data wrongly. I’m struggling to understand why. I have a couple of suggestions:
- The office is quiet (just me and my line manager, with only a few more people in the building), but I get over-stimulated and sensorily overloaded on the commute in on the Tube before I arrive. It’s not as crowded as it was at rush before COVID, but it’s still quite a lot of people to deal with first thing in the morning, and the announcements go right through me (particularly the super-annoying “See it, say it, sorted” anti-terrorism announcement that they make every couple of minutes, which could probably drive someone to committing an act of terrorism just to stop it). This puts me in the wrong mindset from the start.
- The lighting in the office is very bad, with minimal natural light and dull light bulbs (possibly LEDs, I’m not sure). I know autistics are supposed to prefer soft, muted lighting, but I find clear, bright light often more helpful for being in a work state. Dull light just makes me feel tired and struggle to focus (literally).
- The work I was doing at home yesterday was one, focused task. At work I have to switch between different documents and programs as well as between tasks, which raises the likelihood of executive function issues.
- Related to this, I don’t really take any breaks during the day except a forty-five minute lunch break (aside from toilet breaks). This is because I work somewhat shorter days and it feels wrong to take breaks if I’m finishing early. I’m beginning to wonder if this is a false economy and I should finish later so I can take longer lunches and maybe a mid-afternoon break to try to adjust between tasks better. I’m not sure if my line manager would want this.
- I’m probably too tired most of the time, which is partly my fault for going to bed late, albeit that my sleep pattern is largely fixed by things outside my control at the moment (e.g. being in a long-distance marriage with someone in a different time zone, so I’m online late at night Skyping). Hopefully this will change soon, although if I have a sleep disorder (the NHS hasn’t decided yet), there may be a limit to how much things can change.
- I’m distracted. There isn’t really a way around the fact that my job is boring and I only survive it by thinking of other things at the same time.
- Masking. I’m not sure if this is an issue. There is only one other person in the office with me, but I feel like I’m masking from the moment I step out the front door in the morning until the moment I get back in the evening (if not later, as I mask with my parents too, just not as much). It’s very draining even if there aren’t many people around at any given time and if anyone else does walk in, I feel even more tense.
- Not autism-related, but it is easier to spot mistakes in someone else’s writing than your own. With text you have written, your brain tends to read what you want to be there rather than what’s actually there.
Sex, Friends, Books (No, the Genie Didn’t Give Me Three Wishes)
I had my last chatan (bridgegroom i.e. marriage) class last night. I think there might be another one closer to the wedding (no, still no news on the visa). I learnt more than in the previous one, although I still struggled to work out if I was expected to say anything and if so, what. I did wonder what someone who isn’t already committed to observing at least some of the laws of taharat mishpacha (family purity) would make of it, particularly if they were already having sex with their fiancée, as, realistically, many couples getting married through the United Synagogue would be. I don’t know whether taharat mishpacha contributes to keeping marriages fresh the way that it’s often claimed. Probably it sometimes does, but not always. I’m committed to the idea for religious reasons, regardless of any other benefits. I am, as a rule, sceptical of the idea of non-religious benefits from mitzvot (commandments) such as the purported (and mostly spurious) health benefits of kashrut (the dietary laws). Inasmuch as I see non-religious benefit in taharat mishpacha, it’s to stop men pestering their wives for sex when they’re on their period. I guess my view is different to most people’s anyway; if you’ve been celibate until the age of thirty-nine, abstaining from sex for two weeks a month doesn’t seem particularly daunting. It’s the being able to have sex for two weeks a month bit that is novel.
This morning neither of my alarms went off, for some reason, so I overslept by quarter of an hour, although I hurried and got to work on time. Work was busy again as it’s the time of year when most people pay their membership fees. I went to the bank and paid in fifty cheques to the astonishment of the clerk until she realised we are a charity, not a business, although we’re not a typical charity (“communal organisation” would probably be a better term), hence the membership fees.
I came home and intended to spend some time unwinding without screens, but went online instead. Big mistake. After a while, I felt ill from too much screen time, which was my fault, and from not eating which was not my fault, as dinner was very late. I hope E’s visa comes soon so we can set up home together; like me, but unlike my parents, she prefers to eat dinner early.
I would have liked to do some more Torah study or novel work after dinner, but felt too exhausted. I’d like to read some more of Dune before bed (I’m about three-quarters of the way through now), but don’t know if I’ll have the energy/brainpower. I’d rather not push myself too hard and burn out tomorrow, although it may be too late for that by now.
In therapy we touched on a subject that I’ve discussed a bit with E, about the fact that I mask my autism (as a general rule, masking in autistics tends to result in burnout in the end). I try to be what people expect me to be, to do what is “normal” or “right” rather than – well, I don’t actually know. I can’t really say “rather than what I want to do,” as I don’t actually know what I would do without masking, because I’ve been doing it from a very young age, maybe four or five, but more so from adolescence.
I don’t really know what I would like to do or who I really think I am. I remember Ashley saying a while back to imagine how I would behave if I was on a desert island just with E. It’s hard to tell, as I’m not terribly imaginative in that way. I probably wouldn’t be that different from how I am with E now, but it’s hard to map that on to interactions with other people. I would probably be a bit freer to voice opinions, including controversial ones, to make jokes or explain things to people.
The flipside of this is the online autism forum, where I’m beginning to wonder if people are deliberately not “talking” to me. Other people seem to have conversations, but that rarely happens to me. There’s a core of people who seem to connect and refer back and forth to each other and I can’t seem to get “in” to the group. Possibly they comment a lot more than I do, I’m not sure, so maybe it’s a visibility thing. I try to only say things if it’s going to be helpful or incisive, I don’t just joke around. And, as I mentioned the other day, I tried to “friend” someone on there, but he didn’t respond and I don’t know if he didn’t see it or didn’t want the contact.
The worst thing is, because I’ve mentioned being an Orthodox Jew a number of times, I wonder if that’s why people aren’t responding, not so much from antisemitism, but because they have an image of Orthodox Jews being judgmental, ascetic, humourless, and who knows what else. In a word, “Other.”
Probably I should stay away from there. I feel I’m on the forum and the Orthodox Conundrum Facebook group too much at the moment, trying to get noticed, in a “I want to be friendly and talk to people” way, not an ego way, but I don’t think it’s really working. I look forward to E being here; hopefully I won’t need to feed my social needs in this unhealthy way when we can interact normally like most couples instead of through WhatsApp texts and limited Skype time.
I found a substack by someone who experienced child abuse in the Jewish community. I am not sure whether to follow it. I don’t know why I have this fascination with abuse survivors. Is it because I dated one? I suspect not. I think I became more aware through being in group therapy-type spaces (support groups etc.). It made me realise how many survivors are out there, and how invisible they are unless they tell you what happened to them.
I worry that it’s some kind of morbid emotional vampirism, as I’ve mentioned before. I think a more likely reason is that for decades, I’ve been aware of myself on the margins of the frum community because of neurodivergence and mental illness. Somewhere along the line, I got interested in other people on the margins of the frum world, and abuse survivors are about the most marginal people there, often actively thrown out by people who don’t want to believe that abuse happens in the community, and that it’s often the most powerful, influential or “religious” people who perpetrate it. Hence, I am more interested in survivors from frum backgrounds. What I have experienced isn’t anything like what they have experienced, but I see some similarities about feeling unwanted in the community, feeling anger at being marginalised, wanting to fit in, but not knowing how, feeling shame just for being who you are…
“Tali Steine” writes: “My light speaks to me, enveloping me with goodness, with beauty, with love. You aren’t bad or worthless, she says. This wasn’t your fault… You don’t have to carry this shame.” I feel if she can tell herself this, then I should be able to tell myself. But somehow I can’t. I feel, “If I suffered as much as she did, I could say it wasn’t my fault, because it would clearly be disproportionate to anything I might have done, but I haven’t, so maybe it is my fault.”
I’m still not sure what to do about the substack.
I’m a bit stressed at all the books on my To Read shelf, particularly those in series. Herewith, a list of book series I’m in the middle of at the moment. To qualify, it has to be a series where there is reasonable continuity beyond one recurring character and I have to want to read the whole series; I’d like to read all of Agatha Christie’s Miss Marple and Poirot stories, and all of Dorothy L. Sayers’ Lord Peter Wimsey stories, but the links between stories in these series are slight and the series are long enough that I doubt I’ll read all of them (I think Christie wrote something like seventy-nine mystery/thriller stories, plus half a dozen pseudonymous romances and a couple of memoirs).
James Bond: I figure these just about have enough continuity to qualify. I’m reading them in a completely random order, for various reasons. I’ve got about two thirds of the way through the series in two years or so, so I guess I like them… I currently have copies of Live and Let Die and The Spy Who Loved Me on my To Read shelf, then there are another three to read after that. In recent years, a bunch of people have written other James Bond books, but at the moment I only plan on reading Ian Fleming’s ones.
Dune: I just started this a few weeks ago, but I do want to see how it plays out, even though it consists of two trilogies (or one hexalogy) of very long books.
Harry Potter: I’ve read the first two and I have most of the others and I will read them, but I’m not in a huge hurry, as I felt the first two were a bit over-rated. On the other hand, I like the word “Azkaban,” so I’ll probably read book three sooner rather than later.
A Wrinkle in Time: I’m not sure what the overarching title for this is, so I’ve just gone with the title of the first one. I read it a couple of months ago. It was OK, but I’m not sure whether I’ll read the others. As with Harry Potter, it seems to clearly be a children’s series and I wonder a bit why so many adults read it.
Robot/Galactic Empire/Foundation: in the 1940s (I think; I’m too tired to check), Isaac Asimov wrote three science fiction short story series, collected into books: the Robot, Galactic Empire and Foundation series. The three series were totally unconnected (technically, you could argue that he originally wrote two very different series of a robot stories, some short stories and longer murder mysteries with a human and robot detective team) [EDIT: Wikipedia tells me that there were light connections between the Galactic Empire and Foundation stories from the start]. Then he stopped writing them for decades, but in the 1980s, he went back and expanded the Robot and Foundation stories and tried to join them together, with the Galactic Empire stories in the middle, into one big future history sequence.
I’ve read the Robot and Foundation series and I keep thinking I should read the Galactic Empire books (there are only three novels and a short story), but I’ve never been that enthused by the concept. The Galactic Empire was the only series he didn’t later expand to make the connections clearer and I feel it will be disconnected and galactic empires don’t really grab my attention, unlike the premises of the Robot and Foundation series. But I also feel I should read them while re-reading the other books, as a lot of the connections between the books and the overarching narrative went over my head on first reading (I’m not actually sure what the best reading order is: internal or external chronology). I should also say that, as an end to this massive series of about fifteen books over five decades, Foundation and Earth was really weird. Not exactly bad, but weird, with a strange “The end… or is it?” moment just when it seemed finished that makes me feel vaguely negative about the whole sequence. On the other hand, Asimov is a light read, so I could probably get through fifteen of his books in the time taken to read the six Dune novels.
Hilary Mantel’s Thomas Cromwell trilogy: technically, I haven’t started this yet, but I got the first two volumes from the free book box a few weeks ago and I’d like to read them, but I feel I ought to make progress on some of the other series first.
Richard J. Evans’ Third Reich trilogy (I didn’t say this was only for fiction series!): I still have the third book in this series to read, The Third Reich at War but I know it will be the hardest, given that it deals with the bloodiest war in human history and is permeated by the Holocaust (the Holocaust has its own chapter, but Evans says in the introduction that it’s really present in every chapter because it was so tied to the Nazi war aims and conduct). I actually have a big book on the Soviet Union to read afterwards, because I told myself to concentrate on one totalitarian dictatorship at a time! Thankfully, that’s a one-volume history.
Same Old Scene
I struggled a bit with Shabbat (the Sabbath) again. I got to shul (synagogue) on Friday night despite feeling very tired. I found dinner with my parents exhausting. I know “selective mutism” is something a lot of autistics suffer from. I don’t really experience it, but I have noticed that when autistically exhausted from peopling (rather than just tired), I can become monosyllabic. By the end of dinner, I was communicating in gestures more than speech. It wasn’t conscious. It’s a bit frightening.
I fell asleep for an hour after dinner and then was too tired to move for an hour after that, so I didn’t do as much reading as I would have liked. I spent an hour reading The Guide for the Perplexed, but only managed a few pages as it was based on Medieval neo-Aristotlean philosophy which I didn’t really understand so I made slow progress. I’m not sure how much relevance those passages really have for contemporary Jewish thought. I also wonder how they were understood in Early Modern and Modern Eastern Europe, although not many people would have been reading it there – not many rabbis, let alone laymen. The Kotzker Rebbe is supposed to have said of the Guide that “If you are wise, it is a guide; if not, you will be perplexed,” which is probably true. I read a few pages of A Fire Burns in Kotsk and a couple of chapters of Dune, but not much else.
I slept late again this morning. Mum and Dad were out for lunch, so I ate by myself, reading the latest Doctor Who Magazine. I’m not at all optimistic about the return of Russell T Davies, David Tennant, Catherine Tate and others, or the deal with Disney. I worry it’s just a return to the worst aspects of Davies and Tennant’s first run, with added Big Business. As when Davies was showrunner previously, DWM is now full of coy preview articles that tease the new episodes without giving anything away, which I just find irritating. I don’t like spoilers, but just being told endlessly that the next series is going to be amazing when I’m not going to see it for a year or more is annoying, even if I wasn’t convinced that it won’t be amazing. I skim DWM more and more.
I dozed off for a bit after Minchah and ate seudah (the third Shabbat meal) after sunset, which is not ideal. I was too tired to do very much at all in the afternoon, although I did some Torah study (Shoftim/Judges in Hebrew and with a modern commentary) after Shabbat and also some work on the plan for my novel, but I mostly got distracted and procrastinated online. I think the beginning of my book is quite good, but after about chapter five, when the plot really kicks in, I run out of incident and jokes, which is not good for a satirical thriller. I’m not totally out of ideas, but there are definitely fewer as it goes on. I sort of want to just start writing (I feel like an athlete with muscles tensed to run, but unable to go yet), but I want to do more research to generate more ideas, both external research (reading relevant books) and internal research (thinking about my characters and how their world works). I’m feeling pessimistic about this actually resulting in a readable full-length novel, but I’m trying to tell myself I’m working for my own amusement. Then I read stuff online, as I did tonight, where people are saying, “We want more positive frum characters in books and TV” and I want to do something towards that, even though I think setting out to produce a “positive” image of the frum community would backfire badly (and this book is much lower than previous ones in frum content). I think/hope once I actually start that will generate more ideas. As I’ve said before, I’m a bit of a “pantser” in that some of my best ideas come up once I’ve begun writing, but it’s uncomfortable to bet on that.
I thought quite a bit about that post on the autism forum about connecting with people (where a lot of people said they connect with animals and soft toys more easily than they connect with neurotypicals) and also the lukewarm response to my post on the Facebook group about being autistic in the frum (religious Jewish) community. I feel it’s not really an option from me to cut myself off from other Jews or other people in general. I feel a specific religious commandment to try to love other Jews and people in general. Plus, I do feel connected to other Jews, whether I like it or not. I’ve been angry for days at the new Israeli government and I know that’s because I identify as an Orthodox Jew, and if other Orthodox Jews are corrupt, self-serving, racist or homophobic, I feel that my identity is attacked. If nothing else, people will assume I’m the same. So there is a connection there whether I like it or not.
I do wish I knew how to move forward with my life, whether that involves the frum community, the autistic community or both, or whether it involves my writing or proofreading or something else. I do know that, realistically, I should wait until I’m married before really doing anything new, but it’s so hard waiting without knowing when that will be or even when E’s visa will arrive. It feels SO HARD waiting and being separated.
I watched an episode of The Simpsons tonight where Homer complains he hasn’t done anything with his life at the grand old age of thirty-nine. That’s how old I am! At least he has a full-time job, three kids and a wife who he actually gets to live with! I am nowhere near as fat and I’m not bald (not even thinning) so that’s something.
Last Shabbat of 2022
I didn’t blog on Thursday night. I was tired and didn’t have much to say. Work was OK, but I ended up staying late, partly working, but mostly because we couldn’t get a minyan (prayer quorum) for Minchah (Afternoon Service) in the shul (synagogue), so after waiting quarter of an hour, the rabbi said we should daven (pray) privately, which we did, but then someone else turned up to complete the minyan and the rabbi made us do Minchah again, plus Ma’ariv (Evening Prayers). I’m not sure what the ratio of time spent hanging around to time spent davening was.
On Friday I was exhausted again and missed shul. I felt bad about that, but I’m not really sure what else I could have done. My parents were out for dinner and I enjoyed the time by myself, but felt a bit lonely. I also realised I had forgotten to take my medication on Thursday night and Friday morning. My parents assumed that’s why I was so tired, but I think it’s just autistic exhaustion.
I did forty-five minutes of Talmud study and read a bit of Dune. I couldn’t stop thinking about the post I want to write on the Orthodox Conundrum group about being autistic in the frum world. It was not appropriate to think about writing on Shabbat (the Sabbath), but I couldn’t stop, which I guess is the autistic “monotropic focus” at work. I thought I had something worth writing by the end of the evening, but I either forgot some of it or I was overly optimistic about it, as when I tried to write it this evening, after Shabbat, it was just waffle. It doesn’t help that I don’t know what I want to say, beyond feeling a need to make excuses for my poor community involvement (which I should not do) or to express vague anger and resentment at the way my religious life has gone (again, not a good idea). And my comment discussion here with JYP a few days ago has shown that I have absolutely no idea of what practical steps anyone could take to make the community more welcoming to me, let alone anyone else, and I suspect different autistics would react in different ways anyway.
Today I did some more reading of The Guide to the Perplexed, but not much else. I only managed about half an hour of the Guide as I’m still tired and trying to do other things. I’m not sure how sensible it is for me to read the Guide with no formal training in philosophy or Medieval intellectual history. I’m not sure how much I understand, and I’m not sure how much of what I understand is still considered philosophically valid. However, I am enjoying it, but I feel I shouldn’t be spending Torah study time on something I enjoy, but don’t really understand. On the other hand, I persevered with Talmud study and now understand more of it, and enjoy it more too.
I was still tired and didn’t go with Dad to shul for Ma’ariv. He went as he has yortzeit (death anniversary) for his mother tonight and tomorrow, so he wanted to say Kaddish.
I spent an hour working on my novel plan this evening. It still feels like doing a jigsaw puzzle blindfolded in the dark, but I feel like I’m making slow progress. I do still worry about my proposed satirical science fiction thriller not being funny, original or thrilling, but I guess I won’t know until I actually start writing in earnest. It will be hard to keep it relevant if it takes years to write. I still have planning issues and I want to try to use some flow diagrams to map out how the novel should unfold. I’ve got the beginning and the end, it’s getting from one to the other that is the hard bit. I need to keep reminding myself that I’m doing this for fun and that I should enjoy it, as it’s not that likely that it will ever get published.
I probably shouldn’t write too much about my novel, but I have been meaning for a while to clarify what I’ve said about it being an anti-woke satire. When I say ‘woke,’ I don’t mean it as a synonym for ‘progressive.’ I don’t have a problem with progressives and even share some of the same worries albeit not always the same solutions. When I say ‘woke,’ I mean a type of progressivism combined with anger, self-righteousness and often hypocrisy of one kind or another. To me, that’s something else entirely from progressive politics, more a kind of virtue signalling ego trip, particularly when carried out by faceless corporations that try to appear woke while behaving appallingly (Amazon, Ben and Jerry’s). And, yes, I intend to satirise the similar tendency at the opposite end of the political spectrum, right-wing populism (which recently has been worrying me more, although I find it less funny). I want to satirise trends and maybe institutions, but not people. Even before writing, one character has gone from someone I wanted to satirise to someone I feel empathy for.
After that, I was going to watch Ghostbusters: Answer the Call, the all-female Ghostbusters reboot from 2016, but decided I’d rather read Dune. I finished the first part of the novel, but I’m not sure I want to read more tonight, but I’m not sure what I’d rather do instead either.
Carol Anne commented on an old post where the rabbi of my shul (the one I’ve now stopped going to) offered to share the article I wrote on being autistic in the frum (religious Jewish) community on the shul WhatsApp group. I said I would think about it, but I actually forgot to get back to him. It was probably for the best, as I left that shul, but it does make me think what I could/should do about this (this = finding a place for me in the Orthodox Jewish world, but I suppose it could also be trying to make the frum community more accepting of autistics).
The post I posted on the autism forum about masking and code-switching didn’t get much of a response, and what it did get, I found confusing and hard to understand. Possibly I shouldn’t assume I can really let people see the world the way I do.
It’s been a difficult year in many ways. I spent so much of it waiting to get married to E and we’re still not fully married. However, we are at least civilly married, even if we’re still separated by the Atlantic. Also, Nephew was born. That makes two new family members for clan Luftmentsch! On the downside, Mum and Sister both spent time in hospital, Mum with her heart attack and Sister with pregnancy issues in the spring (as well as when she actually gave birth this December) and I’m still a bit worried that Mum will have another heart attack. Pesach time was very stressful, with Sister in hospital immediately beforehand and Mum in hospital soon afterwards. Even more tragically, my parents’ friends’ son died, as did Ashley. It’s probably not sensible to divide years into ‘good’ and ‘bad’ years, as if every day was the same, but this does seem to have been a particularly varied one, so many good and bad things.
Masking and Code-Switching
Warning: this is another long post. The short version is I miss E a lot and feel miserable without her, and (unrelated point) I also feel miserable trying to ‘pass’ in societies or sub-cultures I don’t feel I belong in. The long version…
I woke up feeling bad. I’m not exactly sure what “bad” means here, which I guess is the interoception issue again (difficulty understanding my body’s signals). Exhausted, maybe a bit achey and just generally wanting to withdraw from the world. I thought I was just tired, but it stayed after breakfast and coffee. I actually went back to bed for a few minutes after breakfast, but forced myself to get up again, even though I didn’t really want to, so I could daven Shacharit (say Morning Prayers) before halakhic midday (which is almost the same as secular midday at the moment). I felt awful when davening, again, it’s hard to say how, but both physically and emotionally uncomfortable. The emotional side is easier to describe: it was one of those times when my memory decides to show me a blooper reel of all my worst mistakes, which are generally bad social interactions. I try to be kind to myself and tell myself that I have autism and social anxiety, and that for most of my life the autism was undiagnosed, so it’s not surprising I messed up a lot of social interactions over the years, but I still end up feeling useless and pathetic (I guess the pathetic is as much because of the autism as despite it).
I miss E a lot. Really A LOT. Mum thinks that my mysterious illness feelings are just missing E and worrying about when she will get her visa, which may be true. After lunch, the physical discomfort subsided, but I felt really depressed, and lonely (when my parents went out). I had the feeling of agitated (anxious?) depression that feels like desperation. I’m not really sure what to call it.
I tried to finish my proofreading profile on the freelance site. This involved looking at other proofreaders’ pages and trying to work out was a reasonable price/word count/speed combination to offer. This led to monumental procrastination to avoid both anxiety and decision-making (autistic executive function issues? Possibly). Also a lot of agitated pacing. People seem to be charging relatively large sums of money for small-seeming amounts of work, which makes me wonder if this is going to be more difficult than I’m expecting it to be. I worry about screwing this up and getting thrown off the platform (or worse), which I can see is catastrophising, but that doesn’t make it seem better.
I got the profile mostly sorted, but there was a FORTY MINUTE English test (US English) that I needed to pass to be allowed to call myself a proofreader on the site! I went for a twenty-five minute walk in the cold, dark and rain, which helped me calm down a bit, then I did the test, even though my computer was playing up a bit. I did in about fifteen minutes and got 95%. I was annoyed not to get 100% as it was very easy and repetitive. I don’t know which questions I got wrong. I think a couple were awkwardly phrased and I wonder if it was one of those. They were all multiple choice questions, usually involving picking the correct word to go in a sentence or the correctly punctuated sentence out of four options, but I felt some answers had two correct answers, although sometimes one was arguably more obscure than the other. I can’t remember all the problematic questions, but one was about whether a film won “awards” or “the awards” and I felt both answers could be right depending on context.
I wonder if I’ll get any clients. I feel like my profile was less engaging than other ones I saw on the site, but I wasn’t sure what to say, especially as I don’t have much experience yet. I feel that my writing style is overly formal and feels dated to most people. I don’t know if that’s autism; it may be.
There was a thread on the autism forum about whether it’s better for autistic people to work a nine to five job or be self-employed, given that the later requires a lot of extra stuff (networking, admin, taxes). Both ended up seeming pretty awful. At the moment, it looks like the best-case scenario is that I end up doing both. Hmm.
I had little time, energy or brainpower after that for Torah study. I tried to do a few minutes, but struggled to concentrate. It doesn’t help all my Torah study at the moment is from fairly heavy-going books or in Hebrew. I was still agitated and pacing.
Mum said I’ve been down a lot lately and I have been. I am going to go back to keeping a daily mood record for a bit to check how many days I’m depressed. I feel I haven’t been depressed for many consecutive days, but depression just needs to be over a majority of days in two weeks. That said, I feel I’m never going to get off my meds if I keep getting depressed again, even if it is SAD that should rectify in a few months. Three months is a long time, though…
My procrastination while trying to finish the profile involved messing around on the Orthodox Conundrum Facebook group, reading old posts and feeling that I’m never going to fit in to the Orthodox community, even the Modern Orthodox community, although also thinking that the Anglo-Jewish Modern Orthodox community is very different to the American and Israeli Modern Orthodox communities (or equivalent) and so direct comparison of what would be acceptable or successful between them is not helpful.
I’ve been thinking a bit lately about masking. In the autistic community, masking involves suppressing autistic behaviour that is not considered “normal” in the allistic (non-autistic) world. This can include stimming (repetitive motions intended to soothe and aid concentration), inappropriate eye contact (too much, too little) and body language, excessive conversation about special interests as well as behaviour or reactions that show the anxiety and confusion many autistics feel in social interactions. Masking can also involve using pre-planned “social scripts” to navigate social situations in “acceptable” ways. Too much masking is thought to lead to autistic exhaustion and autistic burnout, as well as hiding a person’s identity from others.
I felt that I don’t mask much, but on reflection I think I do. I don’t stim much, but I try not to do it in public. I avoid talking about my interests for fear of the response it will get. I don’t show my social anxiety, I try to consciously control my eye contact and body language, and I use social scripts a lot to manage conversations with people (I was going to say with “strangers,” but actually I do it with my family too).
It occurred to me that I deal with another layer on top of this because of my intersecting identities. Code-switching is the linguistic term from changing from one language or dialect to another. It’s a fairly neutral term for a phenomenon that anyone who is bilingual or belongs to some kind of minority experiences, although if you google it, you would get the impression that it only happens when ethnic minorities in white majority Anglophone countries are made to change their language to standard English by the white majority. To be clear, it can happen in an oppressive way (between classes and with regional dialects as well as between races, which isn’t really recognised by the articles I saw), but it can also be a fairly inevitable product of cross-cultural contact.
As a Jew, even more so as an Orthodox Jew, I code-switch all the time (typically, the internet doesn’t acknowledge this). What you get on the blog is roughly the amount of Hebrew or Yiddish in my internal monologue (more likely a bit less than I would use). In situations with lots of non-Jews, I would use no Hebrew or Yiddish, even if that meant using weird (to me) English translations (“Tabernacles” “Ecclesiastes”). With my family and friends, I would probably use language similar to the blog, but with very frum (religious) Jews, I would use more Hebrew and Yiddish. It’s a balancing act and one that I feel quite conscious of.
What is really hard for me is constantly masking or code-switching in other ways too, if not literally in the sense of words used, then in terms of identities and ways of looking at the world. There is literal code-switching between British English and American English because I know so many Americans online. I hide my autistic and mentally ill traits from most people. And I hide my Doctor Who fandom from lots of people too: I hide it in the frum world because I fear it’s too secular (even in the Modern Orthodox world, which is open to TV, I fear my interest is too intense) and also because I grew up as a fan when Doctor Who was incredibly unpopular and I would be regularly mocked for liking it, so I don’t like talking to outsiders about it. On the other hand, with other fans I would talk in much more detailed ways about particular stories, plot points, writers, script editors and so on.
I feel like I’m masking and code-switching all the time and it feels really hard to cope at the moment. It’s hard at work, because it’s uncomfortable and probably contributes to my feelings of exhaustion and some of my stupid errors. It’s hard in the frum world, because that feels like a much more conformist and judgmental community generally and the consequences of making even a small mistake feel potentially much greater than a comparable mistake in another community, although this could be my paranoia.
That said, I don’t know how much I want to unmask. The assumption in the autism world is that masking is bad, but I feel that everyone masks to some extent (we don’t go around telling everyone our deepest feelings or talking/singing to ourselves in public even if we might in private). But I do feel that I need to mask less even if I still mask a bit.
I would like to share this somewhere, but I don’t know where. The autism community would know about autistic masking and probably not care that much about the Jewish stuff. I think it should be more known in the frum community, but I don’t really have a suitable place to share it. As an aside, lately I do feel that I have some kind of message, but I don’t know who it’s for or what it is and I won’t know until I’ve said it. I watched a YouTube lecture about autism recently where the researcher giving the lecture said she used autistic blogs in her research. I did email her to ask if she wanted to use mine, or could suggest someone who might, but she hasn’t got back to me yet (it was right before Christmas).
While researching the above, I came across this book and wonder if it could help? (I know it says it’s aimed at autistic women and girls. The assumption is that women are better at masking than men, which is a generalisation at best.) I am wary, as I do tend to buy self-help books and then struggle to implement them unguided. And I’m wary that it uses CBT, as CBT tends not to work on autistics, although it could be autism-adjusted CBT (in which case they should say so).
 I’m actually not sure how intense my interest in Doctor Who is any more. I’ve largely lost interest in the new series and contemporary fandom, but I probably am still obsessive about the original series, if I can find anywhere to indulge that very specific obsession.
Autism (Autistic Spectrum Disorder) vs. Asperger’s Syndrome
I woke up late, feeling very tired again. I hope I get my sleep disorder diagnosis soon. I had a dream where I was listing missing Doctor Who episodes. My unconscious did pretty well (albeit only getting halfway through the list before going onto something else), but missed The Celestial Toymaker, possibly because it’s over-rated rubbish (one of my least favourite original series stories). Mind you, I think I also missed The Smugglers, which I’m quite fond of, so maybe it was just my unconscious not focusing.
I feel down today. Some of it is the winter, and knowing I’ve got another two months or more before the days start getting noticeably longer and the weather improves. But a lot of it is missing E and not even knowing when we will be together again. I think we would both find it easier if we knew when we will be in the same country, and when we will get married, but not knowing makes it harder.
I set up a profile on a particular freelance work site for work as a proofreader and copy editor. To set up a profile in the writing and translation area, I was presented with a load of tick boxes and told to tick a minimum of two boxes. The only relevant one was for proofreading and editing (one box). In the end I had to tick “Other” just to be allowed to move on, because I don’t want to do copywriting, write press releases and so on. I don’t know why they want you to tick at least two boxes.
It was getting dark, so I stopped in the middle of setting up my profile and went for a run. I had to stop after thirty minutes (I usually aim for forty-five) as I was feeling shaky and faint. I did a bit under 4k, which I guess isn’t awful, even if my pace was. I do need to run more than once a month, but it’s hard with UK winter weather and daylight hours, my inability to get up in mornings and my tendency to get exercise headaches, plus lately I’ve been busy on Sundays, which is my main day for running. When I got home I ate a load of salty food, which seemed to help with the shakiness, but I felt too shaky to do any cool down exercises for ten minutes or so, so I’ll probably ache all over tomorrow. The shakiness went a bit, but not completely, and I got a bit of a headache. I took some tablets and eventually felt well enough to cook dinner (pasta with sauce from a jar), but spent the evening watching Ghostbusters: Afterlife as I didn’t feel well enough to finish the proofreading profile or do any Torah study or anything productive.
I’m not sure what is wrong with me. It’s possibly some kind of autistic interoception issue (difficulty understanding the messages my body is sending me), which I didn’t think was a problem I have, but actually might be one. It would explain why I let myself get dehydrated a lot when I was a child, until I learnt to drink even if I didn’t feel thirsty, likewise for eating. Maybe interoception issues would explain why I often feel vaguely shaky or vaguely faint without really being able to identify clear symptoms or causes. Interoception issues might also explain why I also think I’m really hungry late at night when I’m probably not.
I haven’t done any Torah study today. I’d like to do some, but it’s late and I still don’t feel 100%. I might see if I can find a short article to read for five or ten minutes as I don’t really feel up to reading much else.
There’s a post on one of the Jewish autistic Facebook groups I’m on about an argument on a crafting FB group where someone used the term “Asperger’s” as in Asperger’s Syndrome. Apparently some autistic people on the group complained about the term as Hans Asperger was Nazi and things spiralled out of control from there with a lot of anger. I don’t know why the internet is so good at bringing out the anger in people. Some of it is the anonymity, but I feel there’s more to it than that. I feel people often say offensive things through ignorance rather than malice, but then other people respond in a way that makes them feel attacked in public and it escalates from there. Sometimes I think people would better respond in a tactful private message rather than posting a “You’re ABLEIST” public comment.
That said, I really have no idea why the person reporting this on the autism group spelt “Nazis” as “N4zis”, supposedly “to avoid triggering people”. Does substituting one letter make such a difference? And do people really get that triggered by seeing the word Nazi? I’m Jewish and easily upset and I don’t get triggered. Although I think the cases where trigger warnings are helpful are fairly limited.
Although the anger of this post turned me off, I thought it was a good prompt to explain why I still use “Asperger’s” as a tag, even though I know Asperger cooperated with the Nazi euthanasia plan for the mentally ill. Partly it’s that “Asperger’s” is on my diagnosis report from the NHS. I know DSM-5 (psychiatric diagnostic manual) has switched to “autism” for all autism spectrum disorders, but the NHS isn’t using DSM-5 (I can’t remember what they’re using). I thought it was strange when I got it, but that’s the NHS. From the autism forum (which is mostly UK-based), it seems that, depending where you live in the UK, you can actually get different diagnoses. Some places give “autistic spectrum disorder” with no further details, while others specify a level of severity, and some places are still using “Asperger’s”.
In addition, I felt that “Asperger’s” would be better for finding people searching for high-functioning autism blogs via WordPress, but that does not really appear to have been the case. Also, when I previously contemplated stopping using “Asperger’s,” I felt I wanted something to distinguish me from people with more severe autism. However, I no longer see such a big difference between myself and people with more severe autism. We all struggle to function in a noisy, busy, social world. It’s true that I can talk, and do (some) paid work and have a wife, but I still struggle a lot and I feel that at the moment. So I’m thinking of stopping using or even deleting the Asperger’s tag. I’d like to merge the Asperger’s tag with the autism one, but I don’t think WordPress will let me do that. I probably will stop using the tag, although I don’t know if I’ll delete it.
Ghostbusters: Afterlife was the Ghostbusters sequel released last year after being delayed by COVID. I didn’t see it in the cinema, as I was still nervous about going to the cinema for COVID reasons (I actually still haven’t been to the cinema since COVID although I was hardly a frequent cinema goer before then).
It’s a slightly strange film, reverent towards the original film, if anything excessively so, as it struggles to find its own voice, but, like Ghostbusters II, it somehow missing the fact that the original film was a comedy. There are a few jokes, but it’s really a fantasy/adventure story, and a somewhat slow one, particularly compared with the original.
I’m not sure who the audience was meant to be. The huge connection to the original film suggests it’s aimed at die-hard fans, but the adolescent main characters suggest a younger audience that wouldn’t be expected to know a film from 1984.This is further undermined by the 12 certificate, which would prevent pre-teens watching. The main character, Phoebe, is twelve; children and teenagers tend only to identify with characters their age or older, so that’s pretty much ruling out a teenage audience too. I did like Phoebe and wondered if she was supposed to be autistic, although geeky characters in fiction tend to read as autistic generally, or at least are open to that reading.
Overall it was a decent film and I probably will watch it again at some point, as I think some plot points, and probably some in-jokes, escaped me, but it’s not as good as the original film.
I was really exhausted on Friday and felt very burnt out again, a bit ill and incapable of doing much. I did my usual pre-Shabbat (Sabbath) chores, but then lay down on my bed for an hour instead of going to shul (synagogue). I guess it’s a kind of “autistic shutdown,” where I get overloaded and have to lie still in quiet for a while. I’m not sure why they seem to be more common than they used to be, or why I don’t remember getting them as a child.
I did some Torah study last night and read a bit more of Dune, although I’m going slowly with it. I guess it’s the kind of book that demands to be read slowly: little plot (I’m 100 pages in, about a quarter of the way, and very little has actually happened), but lots of description and science fictional detail. I’m enjoying it, but I don’t think it will be a favourite story as it seems to be for many people. It is frustrating that the volume, The Great Dune Trilogy, is too heavy and bulky to take to work, as I do a lot of my reading during lunch and on the Tube. I’m always in a hurry to read books and it’s frustrating me that, because of size and complexity (among other things), it’s going to take me ages to read The Great Dune Trilogy and also The Guide to the Perplexed (see below). There isn’t a lot I can do about it, though. Some books are just slow reads, because of size, content and style.
I think I woke up a couple of times in the night. About 6.30am I woke up and contemplated getting up, but I decided that even if I did get up, I wouldn’t go to shul. This is where I’ve got to with my social anxiety post-COVID, sadly. In the end I fell asleep again and slept through the morning.
I lay down for two twenty minute periods this afternoon too, although I’m not sure whether they were mini-shutdowns. Other than that, I haven’t done much else other than Torah study (about fifty minutes reading The Guide of the Perplexed) and watching Ghostbusters II, the neglected first sequel, although I did send a couple of overdue emails. I’m feeling a post-Shabbat slump. I had a slight headache earlier, which didn’t help much.
I don’t celebrate Christmas or New Years and when I initially planned to watch Ghostbusters II, I’d forgotten that it’s a seasonal film, although it’s only slightly seasonal (the climax of the film takes place on New Years’ Eve, which necessitates Christmas decorations being visible in some earlier scenes, but no one really says much about it). Unlike the first film, it’s not really a comedy being more of a family fantasy/mild horror film with occasional funny lines, although I appreciated the line about spoilt middle class children being “Ungrateful yuppie larvae.” There’s also a lot less smoking than the first film, which may be another sign of aiming more for a family audience. Incidentally, nowadays the river of evil slime that feeds off anger and hate is called Twitter.
Fast Running Out of Spoons
I stayed up late again last night. Everything was late as a result of going to Sister and Brother-in-Law’s, then eating with my parents, plus, I admit, procrastinating online, then trying to do more Torah study. I watched an episode of Do Not Adjust Your Set late at night to try to get some downtime, but also ended up staying up late thinking about Nephew, and then about Hitler (the chain of thought was complicated, but basically involved thoughts that have troubled me for years about whether Hitler was a cute baby, and at what point Hitler became evil (is there a precise moment, like when Macbeth decides to kill Duncan? It seems doubtful) and then onto whether I had ever seen pictures of Hitler smiling and whether this was a deliberate propaganda decision to make him look aloof and imposing). This ended in me flicking through history books around midnight, trying to find photos of Hitler smiling, which in retrospect was not the best time management.
I woke up missing E. I know I say this a lot, but I miss her so much. It’s hard not knowing when we can be together again, or when the wedding will be. The visa shows no signs of coming, but I am still hoping for a Chanukah miracle, unlikely though it seems. I waited so long to find someone who loved me, and it’s frustrating that now we’re waiting indefinitely due to immigration bureaucracy.
I had to rush a bit to bring the Tesco grocery delivery in, but still ended up doing so in my pyjamas. I do this most weeks, so the delivery guy probably thinks I never get dressed. I felt a bit ill afterwards, headrush/low blood pressurey. I do feel stressed and un-relaxed at the moment; as I said last night, I’m doing extra peopling and getting less autistic recovery time this week and that probably contributes. I’m not really looking forward to work tomorrow, and then, because of the bank holidays, I’ll be working consecutive days next week, so that will be hard too. I feel like as Chanukah goes on, I’m running more and more out of spoons, with no way of recharging (a mixed metaphor, but you know what I mean).
I wanted to go back to bed after bringing the groceries in, but had to quickly daven (pray) before it got too late for Shacharit (Morning Prayers) and then to stay up to be around for the cleaner. I actually went to bed for forty-five minutes after the cleaner came, at lunchtime. I don’t think I slept, I just lay there with my eyes shut, but I felt a bit better afterwards.
I think I’m suffering some autistic exhaustion from the peopling and lack of recovery time. I was more sensitive than usual to the noise of the cleaner hoovering, which is a good sign that my autistic sensitivities are heightened, which usually accompanies autistic exhaustion.
Because I was feeling exhausted, I thought it was a good time to finally watch a YouTube video I bookmarked ages ago of an autistic scientist (an scientist who is autistic who also researches autism) talking about autistic burnout (even though autistic exhaustion and autistic burnout are not the same thing). The presentation is here and the slides for the presentation can be found here.
There was an interesting flow diagram showing that burnout can be triggered by a collapse in energy or a decrease in ability to mask (appear non-autistic) in situations, but it can also be triggered by a growth in ability to cope and mask which leads to further expectations being put on the autistic person by the outside world beyond the person’s ability to cope. You can get to a point where you can’t mask any more because you haven’t got the internal resources, but if you try to step back, you lose the external resources from your job or non-autistic support network because you aren’t doing what you’re expected to be doing. This all resonated; I feel that I’ve burned out for both reasons in the past.
The presenter spoke about the role masking plays in this, in feeling that you need to be “better” (more functional, less autistic) than you are and compared it with other areas where people have to mask. My mind went to LGBT people masking in traditional religious communities, which I guess shows where my mind is on this, but she actually compared with doctors who have to mask their emotions at work and appear unmoved by the suffering they see and how this can lead to high levels of depression and suicidality.
There was a lot about other people having realistic expectations for the autistic person, particularly at work and regarding socialising. This is very true, but it’s hard to manage other people’s expectations. I find it hard enough to manage my own expectations. The presenter also wanted reduced expectations NOT to lead to thoughts that autistic people can’t achieve work/life goals. Rather, they should be allowed to have goals, but not expected to achieve them in the same way as allistic (non-autistic) people. It occurred to me that this is difficult generally, and very hard in a conformist environment like the Orthodox Jewish community.
The presenter spoke about trying to get a job in alignment to a special interest, which I’ve found incredibly difficult. It’s good if you can get it, but I doubt that many people with “niche” interests achieve it (as opposed to those who like numbers or computers).
I find it can be offputting, seeing autistic people who succeed in their careers, particularly if autism-related, while I’m struggling so much in employment. There probably is survivorship bias in autistic advocates and patient experts being drawn disproportionately from the most successful autistics, on the grounds that only those people who are coping well have the wherewithal to engage in advocacy or to become professionals in the autism field. On the autism forum, where the barriers to entry are lower, there seem to be lots of people who are not coping well at all, although there are some fairly successful ones too.
I didn’t do much else. I felt too bad. I really wanted to move forward with setting myself up as a freelance proof-reader so I can start that in the new year (I figured no one is going to be looking for a proof-reader right before Christmas), but I didn’t do anything for it. I didn’t do any novel work, even though I have ideas to add to my unfinished plan. I studied The Guide for the Perplexed for fifteen minutes or so, but struggled to get anywhere with it in this state.
The only other thing I did was to go for a walk and picked up the first two of Hilary Mantel’s Thomas Cromwell books from the free bookcase. I haven’t read these as I was put off by the length and also by the fact that I read an early novel by Mantel, Fludd, for a book club I was in years ago and wasn’t overly impressed, for aesthetic reasons, although it also annoyed me as yet another book where someone losing their faith is presented as an unambiguously good thing, although at least the religion here isn’t abusive. However, I felt I should give her a second chance with a later book, where her style might have matured. I should really donate some more books to the bookcase, although two of those I donated a while back are still there. Some of the books in the case were badly water damaged from the recent weather, which made me a little sad, and makes me think I shouldn’t donate anything until the weather improves and/or more books are taken so that the ones I donate will be within both plastic boxes (a box within a box) and not on top of the inner box, more exposed to the elements.
Writing: Just Do It or Pause?
Today was a stressful day. The snow has turned to ice. The pavement of my road was gritted, apparently for the benefit of the bin men, as the other roads were not gritted. My Mum suggested that if a bin man slipped and hurt himself, he could sue the council for not providing safe conditions, but mere taxpayers are not entitled to such consideration. (Gosh, I’m getting cynical and reactionary in my old age…) I slipped several times walking to the station, but managed to regain my balance without falling over. A car didn’t see me on the zebra crossing and nearly ran me over; luckily I saw it. When I got to the station, the departure board said the train was not supposed to leave for a minute, yet the doors suddenly started to shut. I jumped on, but my rucksack got caught, and I collided with someone who was standing near the door. Then there were Tube delays again, but this time I didn’t find out about them until I was actually on the train and had to improvise my way to work, just getting there on time.
And that was just up to 9.30am!
After that things settled down, but I made stupid mistakes, probably as a result of thinking about my novel when I should have been working. The afternoon was largely spent trying to reconcile differences between two different presentations of data from a database. I eventually solved it, but it was tiring, although I suppose tasks like that do make a change from my usual work, and it’s good to solve a problem completely, even if I’m not sure I always manage to explain what the problem wasto J.
I didn’t fancy walking on the ice in the dark on the way home from the station, so did what I rarely do and phoned my parents for a lift. I then spent far too long online responding to an article someone had posted to the Orthodox Conundrum Facebook page. I didn’t really have much new to add to the discussion, I just wanted to make contact with other frum (religious) Jews, or maybe just other people. Like the Jewish joke about the never-ending conference, “Everything has been said, but not everyone has said it.”
I was thinking a lot about my satirical novel today, probably too much, especially when working, as I said. I feel like I want to write, but I also need to work, I want to widen my work to work from home proof-reading to increase my (low) income, E and I will be getting married soon and we want to have children, then there are my various daily religious obligations. All these things take time and energy. Writing seems like a luxury at best, a distraction at worst. Yet it’s the thing I most want to do, after marrying E (which isn’t an activity in the same sense). E indulges my novel writing, which is good, but sometimes I wonder if it’s a good idea.
I feel I should blog less and write fiction more, but they don’t really take up the same store of psychic energy. Fiction is about understanding the world and I have to be pretty alert to do it, blogging is about processing my emotions and I can do it when tired (like now). It would be easier if I slept less and was less exhausted when awake, but it’s hard to change those things with a suspected sleep disorder and autism. Autistic exhaustion seems to be commonly self-reported among autistics, even if the psychiatric world doesn’t really recognise it.
Like a baby, the novel will probably come when it comes, if it comes. An article in the Jewish Review of Books that I read today stated that writing success requires “talent, persistence, an almost naive self-belief, and courage.” I’m not sure how much I have any of those, except perhaps persistence. I think it also requires imagination, and I’m not sure how much I have of that either as people with alexithymia are not supposed to have much imagination. Part of me feels I should JUST DO IT; another part feels I should take a break for a couple of weeks, although my mind will probably continue to think about the plot of the novel, as the monotropic (singularly-focused) autistic mind doesn’t let things go easily.
The Facebook article I commented on is political, and so is my novel, in some sense, and I’ve drifted back into a “My political thoughts are confused and contradictory and all too often I just mindlessly agree (or mindlessly disagree) with the last opinion I heard and I really should not be allowed to vote or have opinions” mood. There is nothing constructive I can say about this, so I will stop.
Someone on the autism forum started a thread about being autistic and Christian. I think my response sums up a lot of what I’ve been trying to say here for the last couple of years:
I’m Jewish, not Christian, but I definitely struggle with synagogue: too many people, too much noise, and sometimes we have a cantor who doesn’t sing so much as shout (very uncomfortable for me). The refreshments after the service are also difficult: being expected to make small talk, difficulty hearing what people say to me over the general noise, etc.
Religious study in the Jewish community is supposed to be in pairs, which I have not been good at. My brain just stops working when someone is sitting opposite me expecting me to say something insightful. I just study by myself.
Then there’s the social expectations to be married by age twenty-five and have a big family. Also the fact that Judaism expects people to have a lot of energy and focus to meet the requirements of prayer, religious study, ritual observance and family, alongside work, and that’s hard even without factoring in autistic exhaustion and being “out of spoons,” not to mention the issues I noted above.
Wouldn’t It Be Nice
I woke up late, Dad getting me up to help me bring the Tesco grocery order in. I admit I did not rush myself getting dressed afterwards, or having lunch, so it was soon time for my Skype therapy call without my having done very much. Perhaps fortunately, my chatan (marriage) class was postponed by the teacher, although I vaguely worry about what would happen if E gets her visa soon and we want to have the wedding in February – would we do all the classes in time? Although I’m more worried about the visa not coming until March…
Therapy was good, but intense and took up a chunk of the day, as usual. Even having therapy on Skype, I feel I need a few minutes to mentally prepare beforehand, and more than a few minutes to come out of the therapy mindset afterwards.
I did about half an hour of Torah study, which wasn’t much, but I arguably did an hour and a half yesterday, if you count the Jewish podcast I listened to while walking to and from appointments, and I’m going to a virtual shiur (religious class) tomorrow, so hopefully it averages out.
I did spend a little time on my novel plan. I feel that the chunk I wrote needs to be re-written, but not until I’ve finished planning. I’m finding planning this novel is like doing a 1,000 piece jigsaw with no picture, while blindfolded, in the dark, with the pieces hidden around the house and no guarantee that I’ll find them, or that they even exist, and no way of telling if I’ve finished it, or if I’ve made such a mess that you should give up. It is interesting, though. Planning novels of character seemed much easier, which may suggest that I under-estimate how complicated actual people are compared to the understanding of science and the trends in contemporary society needed for a satirical dystopia.
Mary Harrington’s article today for UnHerd was really useful, though, and I’m thinking of subscribing (despite the financial issues E and I are facing) because she writes so insightfully about things that matter to me (especially developing a communitarian conservatism instead of one focused entirely on low taxes and high growth) and what I want to write about. (Judging from the comments, it seems that many UnHerd readers think that Harrington is the best thing about the site, even though she only started writing political commentary three years ago and isn’t a “famous” journalist like some of the other writers there.)
To be honest, I probably needed the slower day, but it’s hard to see it that way and not blame myself for being “lazy.” This is part of the problem I have with “energy accounting” (trying to balance the energy I use with the energy I take on): I am constantly pushing myself to do more, even when I need to rest. As I said to Paula in the comments of yesterday’s post I need to remind myself that I’m dealing with a lot at the moment, especially as so much feels up in the air right now. I have to remember that even if I’m not doing so much practically at this stage, things are still on my mind and stressing me out.
I weighed myself this morning. I don’t often remember to do this. My weight seems to be more or less stable, which is good, as I haven’t been eating as healthily as I was, but also bad, because I need to lose some weight, and because failure to lose weight discourages me and makes me feel weight loss is hopeless while I’m on the current dose of clomipramine, which will continue until 9 January at the earliest.
On the plane last week I listened to Wouldn’t It Be Nice by The Beach Boys, which I hadn’t heard for years. Looking at the lyrics now, it does seem appropriate, or overly-appropriate for where E and I are now. It’s about teenagers who want to be older so they can get married. E and I are definitely not teenagers, but we’re still stuck living separately. “And wouldn’t it be nice to live together/In the kind of world where we belong” probably isn’t about neurodivergence or finding a suitable religious community when you can fit in even though you aren’t “normal,” but it might as well be.
I’m glad that E and I are engaged and getting married, which I thought would never happen, and I’m glad that we hope to improve our careers and communal lives, but it is still frustrating having to be separated for so long.
Exhaustion and Leaving Home
On Thursday evening E was out for Thanksgiving, so we Skyped early, as soon as I got home from work, and for less time than usual. This did at least allow me more time for writing in the evening. I had a fairly unhurried evening and finished reading Accidental Presidents.
This didn’t stop me being completely exhausted again on Friday. I dreamt I was running late for Shabbat (the Sabbath), and when I woke up, I was. Tintin was in the dream too for some reason.
I dealt with an annoying NHS issue (yet another one). I had to phone to confirm that I would take the psychiatrist appointment they offered me, which would mean changing work days and probably missing volunteering that week, all because I was worried that if I didn’t take it, I would have to wait until February or later for another appointment. I also told them that I had noticed that both the letters they sent me recently had a letter for someone else at the bottom. It was actually another letter on another sheet, but I assume it was at the bottom of the file if it ended up on two different letters. At first they thought I was saying the letter was addressed to the wrong person and asked how I ended up with it, but I hope I clarified that my address was correct, they just added someone else’s details at the bottom, a breach of data protection. It’s like they haven’t got enough ways to mess stuff up in the natural order of things, so they have to invite new things to mess up. (They also spelt my very common first name wrong on both letters too, but I’ll graciously let that slide.) Now I’m worried they’re going to hold on to the words “mistake” and “address” and assume my address is wrong and send the letters somewhere else, probably to the person whose letter was sent with mine. That letter was about an appointment over a year ago, so goodness knows if that person heard in time. I’m imagining that letter and confidential information being sent out to random people for over a year now.
I did my pre-Shabbat chores in time and went to shul (synagogue). I was pretty exhausted by the time shul ended, but I waited for Dad and then walked home slowly with him and his friend, when I should have just gone home immediately. I was exhausted enough when I got home that I lay down for half an hour before dinner, which wasn’t particularly good. I did about an hour of heavy Torah study (Talmud and The Guide for the Perplexed), but it took more than an hour to do it, as I kept having to stop for breaks. Because of this, I had little time for recreational reading.
I started reading Science Fiction: The Best of 2001, an anthology I picked up in a second-hand bookshop last time I was in New York (that’s 2001 the year, not the Stanley Kubrick film/Arthur C. Clarke novel), but the first story was one of those stories that starts in mitten drinnen (that’s Yiddish for in medias res) with no indication of where or when the story is set, what all the technology mentioned does, who the protagonist is and so on. That’s not a problem per se, but I was too tired to cope with it, so I stopped after a couple of pages and had an earlyish night (with disturbing dreams).
Recent events have made me feel that I am (finally) ready to leave home. It’s just too much masking and coping with my parents’ conversation being so different to mine as some other things I won’t go into here. It occurred to me that some of my thoughts about being different and no one being interested in what I have to say come from growing up with my family as much as from school experiences. I seem to be able to talk to E and my friends OK.
I nearly fell asleep after lunch as I lay down for forty minutes or so. I probably would have fallen asleep had I not known that I had limited time to daven Minchah (say Afternoon Prayers) and eat seudah shlishit (the third Sabbath meal, which is very much a token thing at this time of year as it’s so soon after lunch). I did a little Torah study, but tried not to push myself too hard. That said, after Shabbat was over, I spent hours doing various chores, so I didn’t get time to relax again (or to write), although I do have less to worry about doing tomorrow now other than packing. I probably do prioritise doing chores and important-seeming things over relaxing, which is probably bad for autistic exhaustion. I do wonder what will happen if I can’t improve my energy levels after marriage.
I was going to write some reflections here on the medical and social models of disability and why I think they break down with autism, but I’m too tired now. It’s pretty much midnight, so I ought to go to bed.