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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.

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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).

Choices

I mentioned in my previous post that I woke up in the early hours with a headache and couldn’t get back to sleep. I did eventually dose for a couple of hours during the late morning, so I’m not too sleep-deprived, but it wasn’t a great night.

I woke up the second time in time to go to my second-cousin’s house for lunch. As I said yesterday, I have lots of second-cousins, but only two I see regularly. We had a big family gathering of eleven adults, three children and one baby. I only intended to go for a while, as I thought I would be overwhelmed and I had wedding stuff to do at home. I didn’t say much and I did feel overwhelmed at times and struggled to join in conversations, but on the whole I had a good time and stayed for the whole afternoon. I had a cuddle with Nephew too, who drooled all over my jumper, but I didn’t care. When it was time to go, he did a weird sticking-out-tongue thing at me, which Dad thinks is his attempt at a kiss.

Afterwards, I intended to do wedding stuff, and I did, but not as much as I intended. I was probably too distracted after peopling to focus properly.

I had a slightly heavy Skype call with E dealing with our wedding, family and autism. I feel I still don’t know who I am now that I know I’m autistic, but I’m suddenly required to make decisions about the wedding, our marriage, relations with family, friends and community, decisions about work and career… It all feels overwhelming, but maybe it’s only by making those decisions that I can actually work out who I am.

I feel that I’ve gone through life on auto-pilot thinking things “had to be this way” from autistic rigidity, not noticing how bad I felt at times due to alexithymia (to be fair, years of depression and burnout felt very bad, but I couldn’t work out why exactly). I’m actually mostly OK with my religious decisions, even if I am trying to find ways to make it easier for those around me, and even if I’m now trying to acknowledge that my mental health, autism, and having less religious family and friends give me unique challenges here and that I need to adjust my expectations accordingly. However, other decisions possibly need to be challenged e.g. assuming that I need to aim towards one day working 9am-5pm in an office. I don’t believe this now, but it’s a recent change.

It’s kind of sad that so many of my life decisions are determined, at least in part, by my neurology and my tendency to certain mental illnesses, but I guess that’s life. We get to choose the decisions we make, but not the conditions under which we make them.

***

I’ve got a phone appointment with the doctor on Tuesday morning to discuss my missing sleep study results and a few other things. I find phone appointments very hard and would like to challenge them on inclusion grounds, but don’t currently have the time or energy. I’ll be skipping volunteering that day to take the call as I didn’t fancy taking it with other people around and, anyway, I need to have energy in the afternoon for wedding stuff and lately volunteering exhausts me.

Dependency

Today was another slow day at work. I did make a number of difficult phone calls, requesting payment of invoices. I think I did OK. The other news is that I’m worried we’re about to have the first family broiges (argument, fall-out) of E and my wedding, but I’m unashamedly putting E and my needs first for our special day. I’m not going in to more detail here. Hopefully we can negotiate our way through it.

I went into the GPs surgery on the way home. I masked, but no one else did, staff or patients. I felt somewhat stupid. I’m not sure whether it’s still legally required. Masks are rare enough now in London for it to be notable when people are wearing them and I keep being jolted by seeing references to them as necessary on American blogs. I did some research the other day and, over the last year, only about six weeks saw excess deaths above the number before the pandemic in England and Wales i.e. most of the time no more people are dying than pre-COVID. The figures for Scotland and Northern Ireland were somewhat higher, but not enormously so. I don’t know why, though, especially as Scotland had stricter laws than England for most of the pandemic.

The reason I went into the surgery was to try to get the results of the sleep study I had done last year. Worryingly, there is no sign of it and the receptionist told me to phone the hospital that did the test. As I had it done at home, I need to find the paperwork that says which hospital was analysing the results. I’m worried that the sleep study equipment, which I had to send back in the post in a pre-paid package, has got lost in the post and I will have to do the study again.

Today was also the second anniversary of my autism diagnosis, but I’m not really sure what I make of that right now. By coincidence, someone on the autism forum asked today how we came to terms with diagnosis. I commented, “I’m two years from diagnosis (today, actually) and I think I still haven’t completely come to terms with it. I accept that I am autistic, I am glad I finally got an explanation for a lot of things in my life that made me feel weird and inadequate, but I still struggle with what it means for me and my life. I can’t really say that I see it as “a difference, not a disability” as many people here say. I do feel disabled, at least in some ways, and I don’t feel I have any of the “autistic superpowers” that some people describe. I want to see it as a difference, but I’m not there (yet?). I’m hoping things might get better in coming months as I get married, move out of my parents’ home and life with my wife (my fiancée is a lot more compatible with my autistic needs than my parents) and perhaps I’ll be able to improve things job-wise too, but at the moment autism still feels something I struggle with a lot of the time.”

[Reading the comment back, writing “my wife (my fiancée…” looks really awkward, but it does make sense if you read carefully: she will be my wife when I live with her, but right now she’s my fiancée, albeit only because I didn’t go into the whole between “two weddings” scenario.]

***

I read an annoying advice column originally from a Jewish newspaper. A full-time kollel student (advanced Talmudic student, but probably not training for the rabbinate), married, with a baby and a wife who works part-time, and getting a stipend from the kollel, was complaining that, while his parents lavished money, gifts and free babysitting on him and his family, his wife’s parents hardly gave them anything. He wanted them to help them buy a house! And yet his wife refused to raise the subject with them! So he was asking the therapist who writes the advice column how to get them to pull their weight. He wanted to ask a rabbi too (given the Yeshivish mentality, I am actually genuinely surprised he didn’t just ask a rabbi straight off). Fortunately, the therapist politely gave him a reality check.

I don’t agree with the Haredi (ultra-Orthodox) full-time kollel for all men mentality, and this culture of entitlement is one of the reasons why (aside from it being innovative and totally against Jewish law and the Talmud). Sadly, E and I are going to be stuck in similar dependency when we marry, not due to religious or cultural norms, but due to our respective mental health and neurodivergence issues preventing both of us from working full-time, without having enough of a recognised disability to get any kind of state benefit. I know it’s not the same; we do both work even if we don’t work full-time and I am trying to increase my workload. And we do have genuine issues, even if the state doesn’t acknowledge them. Still, it saddens me a bit that we’re going to have to rely on parents to help us find somewhere to live and to help practically and financially with childcare.

***

Speaking of entitlement… I say I don’t talk about Harry and Megan, but then I end up making snide remarks, because they are just so funny. The front page story on The Evening Standard today was about their declaration of their children’s “birthright” to be called a prince and princess. I love the way they oscillate between super-woke “everyone is special, everyone has a right to be themselves” egalitarianism and aristocratic “of course we deserve privileges, it’s because we’re better than everyone else” hauteur, without the slightest trace of self-awareness. You can draw your own conclusions about any wider societal applications of this observation.

Incidentally, I think the only way I can cope with the news nowadays is by engaging my sense of dark humour and irony. Who says autistics don’t get irony?

Purim Part II

The good news: E is coming here on 29 March! Three weeks! Also, the wedding is seventy-five days away!

I didn’t blog yesterday. Purim was a mix of good and bad, but I didn’t have the time or energy to blog. I went to shul (synagogue) for Shacharit (Morning Prayers) and the daytime reading of the Megillah (the Book of Esther). As usual, it was a lot less noisy and faster than the evening reading. I was a bit late for volunteering as it took me longer than I expected to eat breakfast and do one or two other things at home. I was glad I went, as we were very understaffed, with several people on holiday and at least one doing Purim stuff elsewhere. We had extra Purim food during the coffee break and were given some mishloach manot (gifts of food) to take home too. I mostly listened to the conversation between volunteers and paid staff. I wanted to join in, but as is often the case, I struggled to find an entrance point or to be heard.

Afterwards I went to Golders Green as I knew my parents were going to see Sister and Nephew so decided to eat my Purim seudah (festive meal) at a cafe that does a tuna cheese melt that I really like and which I rarely get a chance to eat now that I only eat meat and fish on Shabbat and Yom Tov (Sabbath and festivals). One of the other volunteers got the same bus. I would have liked to read, but I was polite and made small talk, difficult though I find that. It turns out that her best friend since childhood works in the same shul where my office is.

The tuna cheese melt was very good, but I struggled with the noise in the cafe. It wasn’t very busy, but I struggle with noise more since COVID, and I found the “background” music intrusive. The journey home took about an hour and a half when it should have taken an hour at most because of bad traffic. It seems like every major road in Barnet is being dug up simultaneously. It’s probably to use all the council’s money up before the end of the financial year in April, otherwise the budget will get cut next year.

I wanted to relax after a couple of intensive days by watching a film (The Batman), but I was distracted by eating, emailing, speaking to Sister on the phone (and hearing Nephew, who now gurgles, in the background) and having strong emotions prompted by an Intimate Judaism Facebook post, which led to my spending an hour emailing them about it (not an angry post, I should clarify). Because of all this, I only watched half of The Batman, although at nearly three hours long, it’s arguably too much to take in one go anyway. I’ve still got half an hour left. It’s pretty good, although not as good as the Christopher Nolan Batman trilogy. I’m annoyed that everyone in Gotham City mumbles, as I keep having rewind to hear important dialogue. If my parents borrow the DVD, I’m going to recommend they put the subtitles up (which they do a lot anyway).

Today was mostly spent with wedding stuff, aside from a useful therapy session. Wedding preparation is going slowly. I do one thing, but it leads to another thing to do that I didn’t expect. But I am getting there and, as I said, E will be here soon and things will seem a lot better then.

***

I don’t want to be political, but I want to comment tangentially on the Gary Linekar/immigration/Nazi Germany controversy. I feel like everything people don’t like politically gets compared to Nazi Germany these days and it’s overkill (except the thing that should most be compared to Nazi Germany, but is largely ignored, i.e. China’s concentration camps). Perhaps people don’t actually know any other historical events to compare things to. That’s why no one says, “This society is like Ancien Regime France” or “We could be facing another Defenestration of Prague” (although there probably are politicians I would like to throw out a window onto a dung heap). Also, I note that the people making these comparisons are rarely Jewish; one wonders what would happen if a white person compared something to the American South in the era of slavery or segregation. I think public the response would be rather different.

Being Accepted

I woke up about 10am and got up to go to the loo, but then went back to bed and oversleep, which I really shouldn’t have done. I was glad to get some peaceful relaxation time when I wasn’t feeling overwhelmed, which has been hard to come by lately, but the rest of the day was a rush.

I felt sad for much of the day. The immediate trigger was an email on a mailing list I’m on, but I think it broadened into not fitting into the frum (religious Jewish) community. What I’m slowly thinking about Purim is that I have to do it on my own terms, trying to keep the mitzvot (commandments), but trying not to beat myself up if I can’t do all of them, or not perfectly. This is hard! But really I need to do it with my whole religious life. The frum world is not made for neurodivergent or mentally ill people.

The problem is still wanting to be accepted by frum people and wondering if I’ll ever have friends who can understand all of me. Maybe that’s not necessary, I don’t know. I just feel uncomfortable compartmentalising my life: frum friends, Doctor Who fandom friends, blog friends, autistic forum friends… Maybe that’s normal. I guess I remember the rabbis at school who were upset that I didn’t go on to yeshivah (rabbinical seminary) for a year and who were disappointed in me. I felt it was partially their fault for not convincing me that it was important to go or guiding me to an appropriate yeshivah, but I still felt bad for letting them down. Sometimes I wonder if people on the Orthodox Conundrum blog would shun me if they knew more about me (which just wants to make me dump my life story on there to see what reaction I get, which would not be sensible).

I wrote the above in the early afternoon. Towards evening, I joined a video call from a Facebook group for Jews with medical struggles related to festivals, in this case, Purim, which starts tomorrow evening. The group was originally for people who couldn’t fast on fast days, but it’s broadened to any kind of medical problem affecting fast days festivals. Actually, the conversation drifted into even more general issues with religious observance and I spoke a bit about some of the issues I’ve posted about here above and in the past. It was good to feel heard and accepted, although I struggled to work out when to speak on a multi-person video call. Another call is planned for before Pesach (Passover) and I hope to attend. The organiser said that they’ve had attendees from different Jewish denominations in the past, although everyone there today seemed to be Orthodox-affiliated. I did feel a bit like “Maybe I’ve found some people who can really understand me?” and one participant messaged me on Facebook afterwards and asked to stay in touch as she has autistic family.

***

E and I were talking about making friends when we get married and live together. I suggested we might want to volunteer at our shul (synagogue) or similar as neither of us is great at the “talk to people in the Kiddush (refreshments in synagogue after the service)” mode of socialising and making friends. I feel like I’m a lot better at making friends online than in the real world.

Bandwidth

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.

Purim, Being Pathetic, and the Autistic Talking Service Parrot

It was a rather stressful day again. Volunteering went wrong from the start. It wasn’t set up in advance, so we would have been delayed fifteen minutes just catching up. Then a table collapsed. I was worried I had not put it up correctly, but it turned out that a leg had just snapped off (I assume from corrosion). Unfortunately, when it collapsed, it squashed a large carton of mango juice, spraying juice everywhere, so we had to tidy that up before we could really start. Then it turned out that we had all misread the number of bags of food needed this week and we were sixteen short when the volunteer drivers came to deliver them. They ended up being added to tomorrow’s workload as it was late (the food bank operates on Tuesdays and Wednesdays, but I only volunteer on Tuesdays). I had to get home as I was talking to my rabbi mentor at 3pm, so I missed coffee even though I could have done with the sugar boost of a biscuit or two and even though I like the social interaction of sitting with the others even if I don’t say much.

Other stuff: there was some family drama that I inadvertently started. Not going into it here, but I wished I’d kept my mouth shut. I cooked dinner after talking to my rabbi mentor (the call was helpful), but didn’t do much else this afternoon. I feel like I’m struggling to hold everything together at the moment and even minor stresses like those today can feel like massive, intractable issues.

***

Other issues: I’m going to volunteer next Tuesday even though it’s the minor festival of Purim. There is a Megillat Esther (Book of Esther, read Purim night and day) reading where I volunteer, as it’s a Jewish institution, so I can listen there and volunteer afterwards. Unfortunately, I’ll have to get up very early, despite being likely to be drained the previous day with work and the evening Megillah reading (crowded, noisy). J wanted me to cover for him in the afternoon in case we have to do the Very Scary Task (he’ll be getting drunk at his Purim seudah (festive meal) as per custom), but now I’ll be out of communication for a bit in the early afternoon. I did check with him and he said it was OK, but I feel a bit guilty. I felt I should volunteer nonetheless as we’ll be several people short next week. I vaguely feel like I’m ruining J’s seudah deliberately because my seudah will probably be alone and I don’t approve of Purim drunkenness (or other drunkenness), even though that’s not really what’s happening.

The other Purim issue is struggling to do mishloach manot (gifts of food to friends). I can’t give to my parents (which I mistakenly did for many years) because we’re in the same household. I only really have two friends in the area; one I haven’t seen for the better part of a year (although I will be inviting him to the wedding) and he’ll probably be either at work or at a seudah somewhere else when I get back from volunteering (the gifts have to be given after hearing the Megillah, but before sunset). The other person is J, but I don’t know exactly where he lives and it seems vaguely inappropriate to give gifts to my boss. The timing issue might also be relevant there too.

I can’t find any charity doing a system where you can give money to them to buy food to send to someone, only for giving money directly (which is also a Purim commandment, but a separate one). I’m not sure what to do. E wondered if I can give money to be included in my parents’ mishloach manot gifts to their friends, but I need to check with a rabbi if that “counts.” This is the type of thing that makes me feel a pathetic Jonny No Mates, something that will be reinforced by the four or five sets of mishloach manot my parents will probably receive from their local friends. This is just a part of the reason that Purim is not fun for me. Actually, I do have friends, just not necessarily Jewish, local or in the real world rather than the virtual one (you can’t send virtual gifts of food).

***

I wrote to the rabbinic mental health email helpline again a while back about my struggles with spiritual growth and Torah study when dealing with autistic exhaustion. The rabbi sent back a long email that I need to re-read and process, but summarised in the quote that “personal and spiritual growth is welcome only where it enhances your wellbeing, and if you find it causes you anxiety or exhaustion- it is “off limits” for you!”

I am not sure what to make of this at the moment. I don’t think stopping growth or Torah completely would be good for me, but I keep thinking of my first burnout/depression when I was sixteen and the doctor told me to stop working for a couple of weeks. I stopped for a bit, but then went back to it. Realistically, a week or two off wouldn’t have stopped my slide towards major burnout a couple of years later, which was driven by undiagnosed autism, but I feel it shows I should take this kind of thing more seriously.

Incidentally, that first burnout/depression started on Purim, which may be another reason it’s not my favourite festival.

***

Someone on the Orthodox Conundrum Facebook group opined again that for non-married adults, the choice is between transgressive sex or “pathetic celibacy.” I suggested that Moshe (Moses) and Yirmiyahu (Jeremiah) were celibate and not pathetic. I was told by the first person and one other that they were great people and we can’t compare ourselves to them, which wasn’t really my point. (Also, this is a classic frum (religious Jewish) debating/pedagogical tactic: when famous biblical or Talmudic figures do something the speaker wants others to do, they’re examples; when they don’t, they’re exemptions who we can’t copy due to their special status. Frum girls are brought up on the Talmudic story of the woman who covered her hair even when home alone despite this being unnecessary according to Jewish law; if anyone suggested she was too holy to copy, they would get short shrift.)  I said that fulfilling the will of God isn’t pathetic and was also told that “pathetic” was being used in the sense of “inspiring pathos” which seemed pedantic and unlikely, and that something can be admirable and pathetic at the same time.

At this point I gave up on the argument, but it touched a nerve as for years I did feel pathetic for failing to attract a spouse and did want people to pity me, on some level, but I also feel, particularly in retrospect, that it was, at least on some level, difficult and admirable for me to stay a virgin for so long (by the time I get to my wedding, I will be just two months short of my fortieth birthday). I am reluctant to describe myself as “pathetic” in either sense.

***

E and I were talking about service animals and I decided I need a talking service parrot that will sit on my shoulder and make small talk to people for me when I can’t do so.

***

I just read an old Dilbert comic strip the joke of which was that Windows 95 was new and exciting and I felt ridiculously old, although not as much as when E and I went to the Museum of the Home last year and I heard a small girl look at a landline phone and say, “I’ve seen one of these before, but I don’t know how to use it.” It was possibly a rotary dial phone, but even so.

Not Secure in My Self and My Life

Last night, I blogged that I would do ten minutes of Torah study and relax. I actually did about twenty minutes, although it made sense to split the sedra (weekly Torah portion) where I did, as Tetzaveh falls into two very different chunks. I just spent too much of the evening doing “stuff,” but it was important stuff. The upshot was that I had little time to relax (just one episode of Yes Minister) and when I got to bed, I couldn’t sleep. I am not good at the whole balance thing, even though I only work two days a week and don’t take my work home with me.

I did eventually get about four hours of sleep and coped OK at work, but it was slow and boring and even a trip to the bank was hard as I got overloaded from the crowds in the streets. J asked me to cover for him on Purim next week if we need to do the Very Scary Task in the afternoon, as he wants to fulfil the commandment (“unhealthy custom” is probably a better description) of getting drunk at the celebratory festive meal. I agreed, as he’s so flexible and forgiving for me, but also because I didn’t have the courage or vocabulary to explain just how much I’m dreading Purim and how this could make it even worse. I just have to hope we don’t have to do the Very Scary Task. Between all this and worrying that alexithymia (difficulty experiencing and understanding my own emotions) means that I will never experience religious joy, I came home feeling pretty depressed.

I watched another episode of Yes Minister and some of Undermind and spoke to E and I feel a lot better now, but I still feel very drained and as I have volunteering tomorrow and more stuff to do, I will try to keep this briefer than might otherwise have been the case.

***

Reading some of this week’s sedra, combined with the family event yesterday, got me thinking about not being envious. Moshe and Aharon (Moses and Aaron) could, according to rabbinic tradition, have fulfilled each other’s roles as prophet and leader and as high priest, but each was happy for the other’s success in their roles. I suspect this is a lot easier if you are secure in knowing what your own role in life is and this is where I struggle as I just don’t know.

On the Intimate Judaism podcast they spoke about the Orthodox world’s tendency to exhort young people to “date for marriage” being counter-productive, as it encourages over-thinking and turning down dates for reasons that need not prevent a relationship developing. They said instead to date for the date, to see if there is something there. I’m glad my rabbi mentor said something similar to me, otherwise I would not have gone out with E. But I wonder if I need to think the same about my role in life, to stop over-thinking my role in my life as a whole and just focusing on being a good husband/son/brother/friend/online community member in the current moment. The problem is that I’m not sure how good I am at any of those…

***

A while back I watched a video on Chabad.org where an abuse survivor said he struggled with tefillin (the leather boxes Orthodox Jewish men and some non-Orthodox Jews strap to their arms and heads during weekday morning prayers) because wrapping them tightly around his arm gave him abuse flashbacks. He asked a rabbi, who said he could stop wearing them, but after a while he went back to wearing them again despite the flashbacks, as he felt that a Hasid should go further than the letter of the law.

I’ve been struggling with this. Aside from the negative social effects of the way this attitude of going beyond the letter of the law in everything has taken hold in many parts of the Orthodox world, it just reinforces my feeling that relying on so many legitimate leniencies myself (leniencies for mental illness, autism, low income, living with less religious parents) makes me somehow inadequate. That I should be able to get by without the leniencies, let alone the things I do that are against halakhah (Jewish law) without being permitted even by a genuine leniency. It’s a struggle and probably connected with the idea of not being secure in my sense of self and my own role in life.

Still Anxious

I feel overwhelmed again. I feel I’m juggling wedding stuff, family stuff, much of which is other people’s anxiety, and the usual Jewish and autistic stuff. I’m struggling, feeling exhausted and worried about burn out. I think I’m soaking up other people’s anxiety, but alexithymia means I’m not always so aware of it until it’s too late. As I’ve said, I can register strong negative emotions more easily than positive ones.

I got to bed very late last night (about 2am) as I was doing wedding stuff, as well as trying to sort getting music to my phone (no idea what the problem is), trying to help Dad and trying to relax a bit before bed. I could have gone to bed at 1.30am, but decided to watch an episode of Yes Minister to try to relax a bit. It helped. Such a funny series, and still mostly relevant forty years on, except the EU stuff. Mind you, the Cold War episodes seemed dated a few years ago, but are relevant again, sadly.

I had a serious talk with my rabbi mentor today about wedding anxiety and stress as well as other anxiety and stress, then I had a serious talk with E about the same things. It was good to speak to them, but, on some level, I still feel anxious and stressed. Arranging weddings is inherently stressful, arranging them long-distance, in a short time period, when both of us have neurodivergence and mental health issues, plus work struggles and, in my case, religious struggles, results in a lot of balls to keep in the air. I thought arranging a small wedding would be less stressful than a large one, but as my Mum said, we still need many of the same things (rabbi, venue, caterer, photographer, etc.), just on a smaller scale. It’s cheaper, but not easier or less stressful.

I did a bit of wedding stuff today, but not much. This is because I went to Nephew’s (belated) pidyon haben. This is a Jewish ceremony that is far too complicated to explain. Sorry. I usually do my best, but this would need a whole post to itself. It was mostly my brother-in-law’s family there, as they’re much larger and more local than we are, although it was nice that Uncle was in the country and able to come too. It was very busy. I always feel somewhat inadequate with Sister, BIL and BIL’s family, as they all seem super-functional. Even the ones with autism or severe learning disabilities seem somehow more functional within those parameters than I am within mine. I try not to compare myself, and I did reasonably well at that, but it’s hard.

I ate quite a bit. I didn’t speak much. I spoke a little bit to Sister’s nieces (aged about eleven and seven). I’m better with young children than adults, I don’t know why. Most autistics say they’re better with animals than humans; for me, it’s children, although I wouldn’t call myself super-confident with them. I also don’t have a clue what to say to babies. I got to hold Nephew for a minute or two, but not for long, and it looks like I won’t be able to go to visit on Tuesday as I’d hoped (I’m in the area for volunteering). It got quite overwhelming after a while and I could have left half an hour or even an hour earlier than we did. I noticed BIL’s nephew (thirteen), who was diagnosed autistic a while back, disappeared around then. Good for him. Sister makes it sound like he’s coping better than I was at that age. Then again, I appeared pretty functional until I was sixteen or even eighteen.

Lately I feel tensions in the family dynamic and I don’t know who to talk to about it, aside from my therapist. I don’t know who the laws of lashon hara (gossip) would allow me to speak to if it’s really just to off-load and not because I’m trying to fix the dynamic. I don’t think I can fix the dynamic, certainly not alone, and probably not at all, as it’s mostly stuff going on around me, not involving me. But it does overwhelm me, as I pick up other people’s emotions sometimes without necessarily realising it.

I have a huge amount to do, but I need to crash. When I got home, I davened (prayed), finished writing this and wrote a couple of wedding emails. I’m going to do a brief bit of Torah study for literally ten minutes or so and then watch some TV (DVD actually), although I’m not sure how much TV watching to trade off against sleep. I feel a need to watch something to decompress, but am also aware that I have work tomorrow.

***

Politics has broken out on the autism forum again, about whether there’s such a thing as cancel culture (eyes raised emoji). I kept out of it. On that subject, after the news stories about Roald Dahl being edited to make his books politically correct last week, and all the Jewish press articles about people caring about Dahl’s misogyny and body-shaming, but not that he was an antisemite who said that Hitler had a good reason for murdering six million Jews e.g. here, I saw today that the James Bond books are apparently being edited to remove the racism. I’m not sure how much would be left if they tried to remove all the political incorrectness! Although in some ways the novels are better than the films. I’m going to carry on buying old second-hand editions. Soon, second-hand will be the only way to get hold of classic books published before 1990 (!) in their original form.

What bothers me about the “cancel culture” debate is the lack of a third way between, on the one hand, the Stalinist/Maoist self-critical “confessions” cancelled people issue, where they say that they are bad people for having published Roald Dahl (or whoever), that they “need to do better” and “will listen to minority voices” in future OR, at the other extreme, the Jeremy Clarkson/Donald Trump “doubling-down” on the offensive stuff. I would like someone to say, “Yes, there is stuff in this book that is offensive, but it comes from another time, and, if respect for diversity means anything, it’s about respectfully listening to other viewpoints, including people in the past as much as in the present, trying to understand them and how we got from where they were to where we are now.”

I did notice, when reading Greenmantle (which is racist, xenophobic and homophobic) that the narrator says interesting positive things about German and Turkish culture as well as negative ones. The book was both written and set during World War I, actually written while John Buchan was serving on the Western Front, and the Germans and Ottomans were the enemy. It made me realise I’m not used to hearing meaningful positive things about other cultures from people who claim to be focused on “diversity,” who tend to make everyone seem the same, which is the opposite of what “diversity” means. It feels like “diversity” means making space for people of different cultures, but blindness to any actual cultural difference. Perhaps you have to be secure in your own culture, or at least conscious of it, to notice the good in other people’s cultures. I think this is why some people find diversity problematic, even though it’s an innocuous subject in itself, because it projects an aura of wanting to remake everyone in the image of the twenty-first century secular West and not even realising that there are other cultures out there.

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.

Good Things

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”).

Getting There

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.

Still Struggling

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.

Online Vigil

I was in the office alone today. Work was mostly boring. I dealt with a couple of phone calls, including one call with an elderly, somewhat hard of hearing woman. Between her hearing and my autistic phone issues, we struggled to communicate. I think she became a bit annoyed with me, but I was doing my best.

I spent the afternoon looking through invoices, trying to find old invoices of particular amounts for the bookkeepers. It was made more difficult as I only had a total amount paid; it could be for several smaller invoices. I desperately needed music or a podcast, but my iPod had died. It looks OK now I’ve recharged it, but I was surprised it died in the first place. I don’t usually let the battery get too low and one charge lasts a long time, which makes me worry that the battery is dying. I was planning on having another go at transferring music from my computer to my phone, which so far I have failed to do, at the weekend, but it’s become more urgent. Also, if I start listening on my phone, I could potentially get noise-cancelling headphones for the Tube.

At one point, I was in the toilet when I could hear a bunch of visiting teenage boys coming down the stairs outside. As there is nothing else down in the basement that they would have access to, I knew they must be coming to use the toilets. I confess I just hid in a cubicle until they were gone. My social anxiety does seem to have got worse post-COVID.

***

Having had a quick look at some of my old blog posts, there does seem some evidence that the headaches I sometimes get are caused by autistic exhaustion or at least that they occur a day or so after doing something autistically exhausting, although as I feel exhausted quite a lot, that may not mean much.

***

Last night someone started a thread on the autism forum for queer members to hold an online vigil for Brianna Ghey, the trans teenager who was murdered in a transphobic attack. I said that I wasn’t queer, but that people shouldn’t be murdered for being who they are, which I didn’t think was a controversial point to make. The person who started the thread then described me as an “ally” which I found didn’t quite fit me, although it was meant well. I guess “ally” seems like a political statement. I didn’t see myself as making a political statement about trans rights, which I find a complicated area to talk about. To me, all people are made in the image of God, and I try to respond to them in that light. I feel that’s a religious statement rather than a political one. I didn’t say any of this, but I guess it makes me feel again that I think about things differently to other people on the autism forum, and elsewhere. I’m also very aware that some people in the Orthodox Jewish community would be critical in the opposite direction, of making a statement that could be seen as an affirmation of trans identity, although I’m sure many others would share my sentiments.

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.

Wedding Thoughts Part 3

Also, Reasons to be Cheerful, Part 3, with thanks to Ian Dury and the Blockheads.

This is one of those days when I don’t have much to say today, but I’m going to say it anyway, as I need to process.

I went to volunteering in the morning. Someone brought rugelach pastries and florentine biscuits because it’s her birthday this week. I’m not crazy about florentines, and, unusually, we actually have some at home at the moment, but I had a rugelach as I felt exhausted from the morning’s exertions. Then watching everyone else eat got too much for me and I had a digestive biscuit too. I much prefer them to florentines. (Note for Americans: digestive biscuits are what you call graham crackers. They were originally advertised as preventing flatulence (!) and so were called digestive biscuits. However, they have no medically-proven digestive benefits, so they aren’t allowed to use that name in the US. I don’t know how Graham comes into it.) So much for dieting. Actually, I’m not dieting, and I’m not even trying too hard to avoid treats (although maybe I should try a little harder). Just as going on clomipramine suddenly sent my weight up, so reducing the dosage has reduced my weight, although not as much. Once you know that your weight loss/gain is largely not driven by what you eat, it becomes hard to stay motivated not to eat the odd bit of junk.

I left a bit early, as there were more people than we needed and I wanted to go to Sister’s early enough that I could get home before the Zoom calls E and I had planned with wedding photographers. This was not brilliantly successful, as I found the area around North Finchley Bus Station confusing and the TfL directions unhelpful. I wandered around the area for quarter of an hour before finding a bus stop for the bus I wanted, but I don’t think it was the nearest one. Then I had to wait ten or fifteen minutes for a bus.

I stayed at Sister’s for a bit over an hour. I wanted to spend some time with Nephew, who I hadn’t seen for a while, and it made sense to do it while I was in the area and Mum and Dad were there watching him. He’s grown a lot since I last saw him and is focusing his eyes much better now and generally looks more alert and interested in his surroundings. He’s too big to cradle now, so I carried him on my shoulder for a while. I think he liked the fact that I was “bouncing” a bit on my feet when standing still. Sister has bought him some flashcards to help his focusing, with black and white pictures of animals or patterns/shapes (black and white because young babies can only see strong contrasts, apparently). We showed him some of these and he seemed to be interested in them.

I got home in time for the Zoom calls with wedding photographers, but not in time to do much. I wanted to do some more Torah study (I had done a little on the bus), but was too tired. Both calls were good and it is hard to choose between the two photographers, even without taking into account that we have another two more calls tomorrow. One has done more Jewish weddings and would allow us to print the photo album directly; the other seemed slightly more professional (although this is hard to tell and probably not significantly different), but we would have to get a third party to print the album. Both seemed to react well when I said I have autism and social anxiety and am worried about how this will affect the photos. I worry about looking rigid and unemotional. I didn’t mention the tremor, as it doesn’t seem to show in photos and I worry a bit that speaking about it makes it more likely to happen by making me worry about it more.

I was exhausted even before the calls. Volunteering seems very tiring lately. I was even more exhausted afterwards. I spent too long procrastinating online, but then felt not tired briefly and managed to spend fifteen minutes reading The Guide for the Perplexed by Rambam (Hebrew acronym for Rabbi Moshe ben Maimon, generally known in the non-Jewish world as Maimonides). It says something about the internet that reading a twelfth century philosophy/theology book seems so much calmer and more intelligent than browsing online. However, I still struggle to follow many of the arguments and those I do understand often seem based on a faulty pre-scientific Aristotlean worldview. The book makes me want to take a history of philosophy course to learn which arguments were debunked and how and what still has validity. When I finish it (which won’t be for months, I’m not yet halfway through), I hope to read Rabbi Dr Samuel Lebens’ A Guide for the Jewish Undecided with more contemporary arguments for God and Judaism. Maybe I’ll read some of Menachem Kellner’s books on Rambam too, and re-read The Guide, which really demands multiple readings, with this context in mind.

***

I realised today that I was feeling calm and happy. It seems that work is a big source of my stress and low mood, as well as environmental factors at home. Someone on the autism forum said the other day that the environment is the main cause of anxiety in autistics and I can believe it. However, it is hard to achieve an autism-friendly environment, especially if you have to work and doubly so if you can’t work from home. At least moving out of my parents’ home should give me some more control over my home environment even if there is nothing I can do about my work environment for now.

***

Lately I’ve been having itchy eyes. I wondered a bit if it was hay fever already (it started in January). I took anti-histamines on a couple of days without results, but they may be out of date (do they stop working?). I’m not entirely sure what’s going on, but it’s uncomfortable.

***

For euphemism watchers: I saw a blogger post a trigger warning today about an “unaliving incident”. It took me a while to realise that this was a reference to suicide. Google tells me that “death” is censored on the TikTok algorithm, so “unalive” was used instead and has taken off elsewhere. Ashley used to talk about the “euphemism treadmill” (the term is Stephen Pinker’s) whereby a word gains negative connotations and so is changed to something less offensive, which quickly gains the same connotations, so the word is changed again, and again, and I think that that’s similar to what’s going on here. I guess it shows that the euphemisms are not just imposed by those wanting trigger warnings and the like, but also by those trying to subvert those warnings. It also makes me think of the Doctor Who story Paradise Towers, where gangs of feral teenage girls have their own argot including “made unalive” for “killed.”

Overwhelm (Again)

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 [1] 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.

[1] 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.

Intersectionality

I just posted the following on the autism forum. I’m nervous about what response it might get, and I won’t find out for twenty-six hours or more because of Shabbat (the Sabbath).

I often feel that I don’t fit in anywhere. I know that’s a common feeling with posters here. People only feel comfortable around “neurokin.” However, I’ve never really felt that inherent connection with other autistic people. Partly it might just be me. I have often wondered if not fitting in has become so much a part of my personality that I unconsciously stop myself fitting in anywhere. That may be true. But I feel a lot of it is being Jewish, indeed an Orthodox Jew. It feels like I have two different identities. We live in an era of multiple, overlapping identities, but I feel like I have two identities that make me massively different to “normal” people, two identities that completely shape my sense of self and my outlook on the world, two identities that summon me to an inherent connection with others (neurokin/mishpachah (“family” i.e. other Jews).

The problem is, I feel torn. I can’t leave behind either identity and I wouldn’t want to leave behind Judaism (I’m honestly not sure about autism), but I feel like among other Orthodox Jews, I feel different because I’m autistic, and among other autistic people I feel different because I’m Jewish. And it’s hard to tell which identity is more stigmatised and misunderstood among outsides, autism or Judaism. (I should probably clarify that Jewish identity is multi-stranded. A person can be ethnically and culturally Jewish without being religiously Jewish, and, more rarely, vice versa. I happen to be all three, ethnically, culturally and religiously Jewish.)

Religious Orthodox Jewish identity brings with it for me so many different thoughts, beliefs, practices, insights, viewpoints, that I struggle sometimes to find common ground with people who aren’t frum (religiously Jewish). It’s not deliberate, we just view the world and live our lives very differently and it can be hard to find common ground.

That said, I have always had non-Jewish and Jewish-but-non-religious friends, so I guess the empirical evidence is that I can bridge the cultural gap in a way that most frum Jews are not willing or able to do (most Orthodox Jews socialise mainly if not entirely with other Orthodox Jews).

I’m just so lucky to have found my wife. She’s the only person who gets me 100%, or near enough (I don’t think anyone can know someone else 100%). She is Jewish, but she’s actually not as religious as I am, although she is interested in becoming more religious with me. But she’s Jewish AND geeky AND, while she doesn’t have a diagnosis, we suspect she might be autistic. And she just accepts me for who I am and lets me be me. She hits my “intersectionality” as well as anyone could, although it’s interesting that she isn’t as observant as me; I guess I feel that there really must be very few of us like that. I suspect a lot of autistic people raised frum stop being religious because being autistic in the frum world is so hard, practically and socially. Others probably go undiagnosed due to social stigma and the fact that the Orthodox community tends to lag somewhat behind the secular Western world in terms of social trends, so we may see awareness and diagnosis suddenly rise in ten to twenty years’ time.

I feel like I ought to do something to reach out to other frum autistic Jews, but I don’t know what. I’m on a couple of Facebook groups for autistic Jews (not just religious ones), but they’re pretty quiet. It really feels like there aren’t many people like me out there.

Overwhelm and Incompetence

Today was a bad day really from before I actually woke up. I awoke from a bad dream. I can’t remember it now, but I was feeling quite disturbed for a while. I remember thinking that my unconscious seems to have a better imagination than my conscious mind and that I need to find a way to tap into it. Then again, most of the dreams I remember are completely incoherent, so maybe not. I did feel quite anxious, although I felt better after eating breakfast.

I had to do the Very Scary Task again at work. I realised that the difficulty with this is only partly social anxiety. A lot is struggling to process what is said to me on phone and to deal with questions on the spot, as well as the fact that I still struggle to remember all the procedure, for reasons that I am unsure of (possibly some kind of psychological block on something I find frightening).

I also had to deal with other phone calls, a LOT of noise (building works in our building and one nearby, plus a group of schoolchildren visiting the building – not our office, but we could hear them) and various other issues I won’t go into here. At one point, I lost Wi-Fi and it took me a while to realise it had spontaneously switched to flight mode (or I had accidentally switched it somehow). I went to the bank, but was too overwhelmed by the people on one of the busiest streets in London. By the afternoon, the phone ringing was making me jump and even the printer was too loud. I felt overwhelmed and wanted to hide in the toilet, although I didn’t.

I did manage to go to the opticians after work and try to get new lenses in my spare glasses (I’ll get my main pair done afterwards). There was noise and it was very busy. I felt didn’t cope, but I got through it, so I guess I did cope.

I did manage to spend a lot of time decompressing when I got home without screens and that really seemed to help me feel better.

***

I spent some time today thinking that J must think I’m incompetent. It’s not just the mistakes I make (although there are a lot), but the hesitations, uncertainty and checking. If he asks me something, I answer positively, but then I worry if that was right and start to sound uncertain, so I then go and double-check, which looks unprofessional, even if I had answered correctly first time.  Work today just felt impossible and I remembered my boss in my further education library job who more or less told me that I wasn’t good enough.

This then spilled into wondering how I can get married when I feel I won’t contribute enough to the household. I don’t mind that E earns more than me, but I wish I earned more than I do. I really need to get some more proofreading work (which reminds me that I need to check I’ve been paid for the work I did, and to try to get a review for it). I know E loves me and wants to marry me anyway, but I still wish we were more financially secure.

This all led on to wondering if I should tell J that I struggle at work or ask for adjustments. J knows I’m autistic. If you recall, I had an article about being autistic in the Orthodox Jewish community published on a Jewish website, under my own name and with photos of me. I wasn’t so keen on the photos bit, but it is standard on that site for those kind of personal story essays. I didn’t think anything more of it, but about a day later J texted me to say he’d seen it. I had stupidly forgotten something that I say a lot, which is that the Jewish community is very small and we all know each other (J wasn’t the only person I knew to see it, but I still think it was the right decision).

The problem is that I don’t know what reasonable adjustments I could ask for. I don’t think it would be reasonable to ask to be excused from speaking to people on the phone or doing the Very Scary Task. They are too important for me not to do and the Very Scary Task only comes around infrequently (and I am slowly getting more adjusted to it). I’m not sure what exactly my problem is, just that often everything feels very overwhelming. I am still thinking about asking to work later in exchange for a mid-afternoon break.

***

The other thing I kept thinking about today is that I want help people, but I’m not very good at it. I don’t really want to go into detail about this here, though. Years ago a psychiatrist told me that I want to help, but I can’t because I don’t understand people and I think she said I never will and I just need to accept it (I wasn’t even known to be autistic at that stage). That feels very true, sadly. I guess E is the right person for me because I can understand her enough to give her what she needs.

***

I listened again to Burt Bacharach’s upbeat theme tune to Casino Royale – not the Daniel Craig film, but the largely forgotten 1967 spoof. I did this because I saw that he had died, and this is the only song of his I really know. Casino Royale is mostly awful, but I really like the theme, corny 60s tune though it is. If I was the kind of person who knew how to edit video and had a flagrant disregard for copyright, I would set the grim violence of the Daniel Craig Casino Royale to the jaunty 1967 Casino Royale theme. “He’s gonna save the world at Casino Royale!”

Authenticity, Sin and the Perpetual Outrage Generator

I had therapy this morning. It was productive. I’m not sure that’s the right word for therapy, but you know what I mean. We covered quite a bit of ground, but mostly around the idea of unmasking and finding my authentic self, which we’re concentrating on at the moment. I joined this with a couple of other ideas that have been on my mind recently.

One is that I’m trying to move away from the concept of ‘sin’ as a way of judging my actions to an idea of whether my actions are taking me towards God or away from Him. I think sin is real (although the English term has all kinds of connotations that aren’t present in the Hebrew chet, which really just means ‘to miss the target’), but I don’t think it’s a helpful way for me to view things right now. It’s better to ask myself if I’m moving in the right direction or not, rather than assume a right/wrong binary which can be confusing when dealing with the way my autism and other issues affect my religious life or the way E and I are moving together religiously now, but are starting from different places.

This also reminds me a bit of something Rabbi Kahn said on a Orthodox Conundrum podcast I listened to recently, where he quoted Rav Shagar as examining not just what halakhah (Jewish law) required in a certain case, but also what God would want. Rabbi Kahn said Rav Shagar was complaining about rabbiswho examine halakhah, but don’t think about what God wants, don’t even conceptualise that God would desire something that might not correspond exactly with halakhah, perhaps don’t even conceptualise God as having desires for humanity relating to values rather than halakhah. (The Maimonidean in me wants to stress that God doesn’t “want” or “desire” anything; these are metaphors we use to understand God in human terms, but you get the idea.)

I mentioned some of this to my therapist and she said that the idea of moving towards God can be connected to the idea of connecting with my authentic self. The idea is that connecting with God is a way of connecting with my authentic self and vice versa. Part of me worries this is dangerously subjective, but I think there is truth in the idea that my authentic self has a natural connection to God, if I listen to it.

Similarly, I’ve been trying to help other people online recently (perhaps not in the best possible way, but that’s another topic for another day) and I think this connects to the idea of moving towards God being a movement towards myself. Just as moving towards God is a movement towards my authentic self, so is a movement towards the authentic selves of others a movement towards my authentic self. I’ve never read Martin Buber’s I and Thou, but I know he speaks of the idea of “dialogue” being about the connection between two authentic selves (I think he might say “souls”). I do think authentic dialogue (in Buber’s sense; I think the term has probably been overused since then) can be a way of finding my authentic self, and also of finding God.

There is a Peanuts cartoon I’ve been thinking about recently, where Linus says that we are here to help other people and Charlie Brown thinks about this and says, “Then what are other people here for?” The point is not that some people are here to help others; rather we are all here to help each other and thereby grow and imitate God, who has no needs and therefore gives without taking.

***

Somewhat related to trying to find my authentic self: I need to try harder to stay offline and off my phone, although this may not be possible until my wife is living in the same time zone as me. Blogging helps me to process my thoughts and emotions. Some news, social media and even idle internet browsing is positive or at least neutral. But too much is not good for me, like too much junk food. Internet news, social media and idle browsing are mostly passive and deadening (obviously blogging isn’t these things). I do sometimes engage with social media posts, but beyond a certain point, it becomes passive, when I’ve said all I’m going to say and read some positive responses and the rest is just repetition or argument. Likewise, I do read some thought-provoking or genuinely incisive news and commentary, but there’s a lot of repetition and verbiage “full of sound and fury, signifying nothing.”

Argument is the real killer for me online. The internet is a Perpetual Outrage Generator (POG). Everything  is the Most Offensive Ever, from politicians to films to other posts. So much of the internet is geared at making us angry at people and things that we had never even heard of before!

The other thing I realised is that the internet confuses is the difference between the urgent and the important. Everything on the internet is urgent, because the internet (or POG) wants you to see and respond NOW because it knows something else will be vying for your attention in thirty seconds time. Even beyond this, the fact that so much of social media is on infinite scrolling feeds means that if you miss something when it goes live, it’s hard to come back to it later. So it all feels URGENT.

However, much internet content is simply not important, whether it’s outrage or a listicle of top ten craziest Harry Potter fandom theories. It’s just the literary equivalent of junk food. Yes, there is serious internet content out there (long-form journalism, serious essays on many subjects that appeal to me, such as Judaism or history) and I do try to read some of it, but most of what I consume is not in this category. In fact, I actually dislike reading long essays online and tend to print these off to read in the real world.

My real world books, whether fiction or non-fiction, Jewish or secular, are mostly a lot more important than the internet. They contain information that someone thought was worth writing at great length, that someone else thought was worth publishing and that I thought was worth buying (I’ve acquired a lot of free books over the years, but you get my point). Yet these important books are not urgent. They literally sit on my shelf where I left them until I’m ready to read them. They don’t get lost in an infinite scroll of new books, nor is the author going to turn up and say that actually, he’s outraged about something else now and could I read that instead (OK, technically this could happen with books, but not as quickly as with social media posts and generally if a book was worth writing, it will still be worth reading some way down the line).

The bottom line is that I feel more authentic, calm and at peace when offline, whether I’m reading books, watching TV (which I find much calmer than the internet), doing Torah study, meditating (I need to write about my new experiments in meditation, but not now) or even davening (praying) by myself. It’s just hard to pull myself away, especially as I’m online connecting with E or doing wedding planning stuff so much.

***

Speaking of books, I finished Dune Messiah. I did enjoy it until I got near the end and it all fell apart. I have no idea of what was really going on. Frank Herbert was great at science fiction world-building, reasonable at characterisation, but bad, or just uninterested, in plot. I need a break from Dune before reading Children of Dune, so I will probably read First World War thriller Greenmantle next.

***

Other than therapy, today I went to get new glasses, but couldn’t find any I like, so I’ll go back tomorrow and try to get new lenses for my existing ones (having checked that I have a spare at home to get me through the two weeks before the new ones come back). I spent some time trying to expand a short piece I wrote about special needs children at the Pesach seder to something long enough to pitch to a Jewish website. It’s a work-in-progress and I’m not happy with it, but I’m further along. I just hope that I can finish it in time for it to be posted before Pesach, with all the wedding stuff going on. I didn’t get much time for Torah study, though, or much else at all.

***

I emailed Rabbi L asking to meet to ask some questions about the wedding. He suggested 8.30am on Friday morning, right after Shacharit (Morning Prayers). I would struggle to be able to get up that early after a work day and don’t want to risk burnout by trying. However, I haven’t told Rabbi L about my autism, autistic exhaustion and burnout. So I think this will be a difficult conversation as I try to do that, but my worry is that if I don’t, he will keep asking to see me in that timeslot.

***

My diet is going badly in terms of avoiding junk. I don’t eat a lot of junk, but I was trying to eat virtually none, without success. Like avoiding social media, a little is probably healthier than none, although not necessarily easier. But I am lighter than I’ve been since I was put on clomipramine in late 2017, which is when my weight shot up and I became overweight. I stopped being overweight a number of months ago, but I’d like to lose more of my tummy before the wedding, if possible.

No. Just, No.

It’s ridiculously late already (I’m trying to be off the computer earlier, without success), and I have therapy in the morning tomorrow (it’s usually in the afternoon), but I don’t want to go two days without blogging, even though I don’t have much to say.

When I was last in New York, E lent me The Rosie Project, a romance novel about an autistic (it says “Asperger’s”) scientist trying to find a partner. She read it years ago, before she met me and couldnt’ really remember it, she just remembered the autism theme and thought I might enjoy it. I started it on the Tube home from work yesterday.

The main character seems to be based on Professor Simon Baron-Cohen’s “extreme male brain” theory of autism, but not on actual autistics who are not all emotionless androids who can’t use contractions, slang or humour, who are not super-organised to the last minute (who are often disorganised and unpunctual, in fact) and who are not incapable of empathy. I have encountered a few people who are a bit like the main character and certainly some who share his negative view of allistics (non-autistics), but he seemed too extreme a case to be funny or relatable.

I got to page twelve before I gave up. I couldn’t get past the scenario presented, that all allistics would murder a crying baby in cold blood without a second thought to save their own lives, if they were hiding in a Holocaust-type situation, except perhaps for one or two who would use the baby as live bait to lure the enemy into an ambush. This is (a) tasteless and (b) untrue. As a Jew, I found the assumption that I would murder a baby in the Holocaust to save myself doubly offensive.

I asked E if the main character ended up married to a “manic pixie dream girl”-type who makes him more “human” and she said yes. Predictable (admittedly the cover picture and blurb gave a big hint). I’m not convinced this relationship would work in real-life, even if I grant that people like the main character even exist in real-life. OK, semi-comic romance novels, like Golden Age detective novels and James Bond films (both of which I like) are not supposed to be daringly innovative or realistic, but I don’t feel inclined to judge this book favourably.

The book had the “added value” bits that many books have at the back now, including an interview with the author (where he insists he does indeed know autistic people), links on autism and suggested book club questions. The autism links sent people to Autism Speaks, a notorious US charity that many autistics regard as essentially supporting torture and eugenics against autistics. And the book club questions invited participants to share their “bad date” stories with each other, showing it’s not just autistics who have no tact and don’t know how to make conversation.

***

As for today, I had volunteering in the morning. During the coffee break, I felt somewhat overwhelmed by the conversation and my attempts to join in mostly failed as people talked over me. I felt better afterwards, when one other volunteer chatted to me while we threw a huge stack of cardboard boxes into the bins and I was able to say that we’ve booked a date and a venue (also a rabbi and, more or less, a caterer, but I didn’t say that). I’m definitely better in one-to-one communication than in a crowd, even the half-dozen or so at volunteering.

In the afternoon, I looked at wedding photographers’ websites. I found it hard to work out which ones I liked. E and I spoke about it afterwards. We’ve got a shortlist of four photographers, of whom we’ve already set up a Zoom meeting with one. I’m quite nervous about the wedding photos. I don’t feel I photograph well, which is probably at least partly due to social anxiety and my medication-induced tremor, but my autism might be a part of it too. I think I look tense, rigid and uncomfortable around people and/or when having my photo taken, probably because I am tense, rigid and uncomfortable around most people or when having my photo taken. So we want to try to find a photographer that can work with that or at least who doesn’t think it will be a huge problem.

***

Modern communication in social media land, part one: I know we’ve discussed here before the habit of blanking out letters in words that are deemed offensive or triggering e.g. r*cism, N4zi or, as I saw today, Asp*rgers. I’m not entirely sure what this achieves, just as I was never really sure what it achieves when newspapers blank out letters in swear words (I believe all newspaper editors have a policy on which words can have an initial letter and which are so offensive they have to be entirely obliterated by asterisks e.g. “The protestor shouted that the former President was a ******* s***”). Whether you’re going to be offended or triggered, you can easily, and probably automatically, work out what the word is anyway, so presumably you’ll still be offended or triggered.

More pertinently are people really triggered by seeing “racism” or “Asperger’s”? I’m autistic and Jewish and hence about as likely to be triggered by “Asperger’s” as you can get and it does nothing to me (Hans Asperger, after whom Asperger’s Syndrome was named, probably cooperated with the Nazi programme of murder of the mentally ill, although to what extent is still unclear). I’m not quite sure how we will end racism (for example) if we can’t talk about racism without self-censoring the actual word for fear of triggering people. And while I understand that abuse survivors can be triggered easily, I’m really not sure there is much we can do about it in this case. If we want to end abuse, we need to use the word “abuse.” It is another example where I’m inclined not to say anything at all online for fear of being accused of writing something offensive.

(I believe there is growing evidence that trigger warnings are themselves counter-productive, but that’s an argument for another time.)

Modern communication in social media land, part two: has the word “gaslight” lost its meaning? I mean its modern, internet-age meaning of lying to someone about the past to deceive or confuse them rather than its original meaning referring to a form of lighting. It seems to be used now as a general term of abuse to accuse someone of saying something bad or incorrect.

Today I saw the following interaction on Facebook (simplified):

Person A: referred to “girls’ Shidduch [arranged blind dates] resumes” in the Haredi (ultra-Orthodox Jewish) world.

Person B: said that it’s offensive to refer to adult women as “girls.”

Person A: said that “girls” is generally used in the Haredi world to refer to unmarried women of any age.

Person C: “A woman is telling [you] that [calling] young single women “girls“ is inappropriate and you gaslit her.”

Person B is right that using “girls” in this context is offensive, even though it is indeed the norm in the Haredi world. But I can’t see how Person A is gaslighting anyone. “Gaslit” here seems to mean “has provided an inadequate excuse/explanation” which is not what gaslighting is. I saw another, similar, if more ambiguous, example on Facebook a few weeks ago. Puzzling.

Less Than Brilliant

No proper post today, as my brain exploded some hours ago under the weight of work, mistakes at work, a commute home involving a not-quite hilariously offensive portrait of autism in a novel, a long wedding-planning Zoom and frequent bouts of apparent low blood sugar. I did write a reply to an article on the autism community about having autism being “brilliant”. I worry that I’ll get flamed there, but decided to post anyway, possibly because I’m operating without a brain. I thought I would post it here too so you can see what I’m talking about if I complain tomorrow about getting flamed.

***

(I’m going to get hated for this.)

Your mileage may vary. Or, my mileage.

I don’t really see my being autistic as “brilliant.” I’m not as negative about it as I was a year ago, but it still seems that, for me (I stress, FOR ME), the negatives massively outweigh the positives. Yes, it’s nice that I can name 300 Doctor Who stories in order (or could, before the last few years nearly destroyed my enthusiasm for my longest-standing special interest – I’m going to get hated for this too), but that doesn’t compensate for struggling to get and hold down a job, being unable to work full-time, giving up on the career I wanted because I couldn’t find a suitable workplace, struggling to make friends, not fitting into the religious community I want to be a part of, being increasingly unable to tolerate busy shops and public transport, etc. etc. etc. I just had a moderately difficult day at work (and not even a whole day) and an hour and a half wedding planning Zoom meeting and my head is ready to explode, and has been since about half-an-hour into the Zoom. This is not “brilliant.” Some of this we can blame on structural ableism (ugh, don’t like that phrase), but I’m not convinced all of it is in that category (another discussion for another time).

I don’t think allistics are horrible people living their lives in a totally alien way to how I would like to live mine. I know some nice, thoughtful, considerate allistics who are quite like me in terms of personality, but can do a full day of work or a trip to the shops without feeling that they’ve been wrestling a gorilla by the end of it. My point is that my personality is not the same as my autism and I don’t think the latter is necessarily responsible for all of the former.

If you can make your autism work for you, I’m very happy for you, but this is how I feel about MY autism. Basically, the only thing that is positive about my autism is that it’s very unlikely that my wife would have married me if I wasn’t like this: my “Renaissance Man” attitude (as my therapist put it) of having both religion and worldly knowledge and culture (although I’m not sure how autistic Renaissance Man really was – in some ways that seems the opposite of autism!). Which is obviously a massive positive, but I worry that for the very same reason, we are going to struggle, because I am never going to earn enough for our combined income to be enough for our needs. (My wife says she wants to be with me anyway. She’s amazing.)

If I can make the proofreading side hustle (ugh, don’t like that phrase either) I’m trying to set up work, then maybe I’ll feel more positive towards autism. My proofreading skills are probably another rare autistic gift, but like Superman near Kryptonite, they fail embarrassingly in the office, perhaps under the stress of masking. However, at the moment, I don’t feel great about the proofreading, as I struggle with the self-promotion and networking needed to succeed (again, not naturally autistic skills). But, as I said, if YOU think YOUR autism is a benefit, then I’m very happy for you (I mean that genuinely).

Letters to No One

On Thursday night, I stayed up late on the autism forum, responding to posts. Some people were in an extreme emotional state and I wanted to try to help.

I woke up late on Friday and felt extremely drained. I doubt it was just the autism forum’s fault, as I often feel this way by the end of the work week, but the forum probably didn’t help. Whatever the cause, the result was that I felt too drained for shul (synagogue) on Friday evening. I did manage to do some Torah study after dinner and a bit of Dune Messiah reading.

I felt a bit better today, but did go back to bed for a while after lunch. I managed to do some Torah study again, but not much else. I’ve been lurking in my room as my parents are doing a “supper quiz at home” downstairs with eighteen friends (E was amazed they have so many and I told her these are just their local friends. E thinks they are super-allistic). This is a charity quiz where people form tables in different houses to participate. The questions are sent in advance, opened at a particular time, then have to be entered online before a deadline. The answers, and the winning table/house, is released a while later. Obviously, there is a lot of trust here about not cheating.

This is an annual event, although usually fewer than eighteen people (plus Mum and Dad) are able to attend. I used to participate, despite social anxiety/overwhelm, but after a couple of years, the quiz setters stopped asking trivia questions as it was too easy to google the answers and switched to lateral thinking questions, which I’m not good at. So, I’ve been lurking upstairs. When I went down earlier, most of the friends were engaged in the quiz, but two men were talking politics in the kitchen alongside someone who was quizzing another friend, a GP, on her health issues.

***

Last night I dreamt about a friend who stopped talking to me when my depression/burnout/suicidality was very bad, back when I was an undergraduate. It was a complicated situation that I won’t go into in detail here and I was largely at fault, even though this snapshot presentation might suggest otherwise (I was totally overwhelming her with my emotional needs and refused to seek professional help early enough, instead overloading my friend). I think she tends to surface in my dreams at times of change and emotional stress, so I guess this was probably triggered by moving forward with the wedding.

I do occasionally remember her and wish that I could let her know that I am autistic and that this was at least partially responsible for my handling the situation so badly, but I’m not sure why I want to do this. To explain myself so that she won’t hate me? Or so that she won’t beat herself up? Probably both. We did have a brief correspondence about nine months after she stopped talking to me, when I naively thought I was over my depression and was preparing to go back to university, where we both said that we blamed ourselves. I had no idea I was autistic at the time.

I started writing a letter tonight. Not an “actually going to post it” letter (I have no idea what her address is, beyond that she lives in Israel now), but a “I need psychological closure, so I’m writing this for myself and will throw it away afterwards” letter, which I’ve done once or twice before. However, I felt that I was just making excuses for myself and disowning my bad behaviour, so I stopped writing.

I had also thought about writing another “psychological closure” letter, to various Jewish Studies teachers I had at secondary school, who were disappointed that I didn’t go to yeshivah (rabbinical seminary) for a year or more after school and before university. Again, I wanted to tell them about my autism and about the way I intuited what a bad environment yeshivah would be for an undiagnosed autistic. To tell them that despite not going there, despite years of depression/burnout and emotional distress and perhaps years of feeling marginalised in the frum (religious Jewish) community, I am still frum. But this seemed to be more about me justifying my life to myself again, and probably in a passive aggressive way, so I didn’t even start to write that one.

I do occasionally wonder sometimes if these rabbis remember me, and whether they really thought they had failed to make me become frum. Unlike the university friend, who I haven’t seen since for twenty years, I did actually see one of these rabbis in a kosher restaurant a number of years ago, and another one used to daven (pray) in my old shul occasionally. I never said anything to them and they either didn’t see me or didn’t remember me.

***

There was Drama on the autism forum again. It’s identity politics stuff that I won’t go into. I think many people online thinks that they are being “silenced” by “those in power” and that places aren’t a “safe space” for them. This is true of people on both sides of the political divide. I guess because there are just so many thoughts on the internet (many of them totally incoherent) that it’s easy to assume that Everyone disagrees with you, even that you are being silenced by Everyone/Authority. You overlook the people who agree with you and only notice the negatives. I fall into this trap myself sometimes. (That said, just because you’re paranoid, doesn’t mean they’re not out to get you sometimes.)

There is enough good on the forum, threads I benefit from and threads where I hope I’m able to help others, that I want to stick with it, but there do seem to be more (a) silly and (b) political posts lately and I feel they get in the way and provoke Drama. I just want to discuss living with autism on the autism forum!

***

I’m watching episode one of Undermind, from 1965. It’s a science fiction serial, written by a bunch of different writers, several of whom worked on the original run of Doctor Who (Robert Banks Stewart, David Whitaker, Bill Strutton and Robert Holmes – Whitaker and Holmes are two of my all-time favourite Doctor Who writers). So far, I find it intriguing, although dated in places. The initial episode concerns a drunken cabinet minister who hits an off-duty policeman, who brings charges. Within a day or two, the minister has resigned and committed suicide out of shame. Nowadays the scandal would drag on for weeks, he might not even resign (cf. Deputy Prime Minister John Prescott punching someone who through an egg at him during the 2001 general election campaign and getting away scot free) and if he did, he’d be back in office in months. Or go on I’m a Celebrity, Get Me Out of Here. There’s also a gollywog in shot in a children’s playroom in a couple of scenes, which certainly wouldn’t happen now. But overall, it’s interesting me, and like a lot of vintage TV, it seems faster off the blocks than modern TV. Today, episode one of almost any drama seems to be an hour of slllloooowwwwlllllyyyyyy introducing the characters, and not much plot.

The sound quality is appalling, but it’s a vintage programme. I’ve found vintage programmes that were broadcast on the ITV networks aren’t restored as carefully as BBC programmes. The BBC has an unofficial “restoration team” of fans of Doctor Who (initially) and other vintage television who ensure these programmes are often broadcast-standard despite being sixty or seventy years old as a labour of love. That doesn’t seem to happen with ITV series like Undermind or The Avengers.

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…