I went to another autism workshop today. The first half was a sort of ‘what is autism?’ overview that was mostly familiar to me, but the second half, on coping strategies, was more helpful. It has made me feel that I ought to be less afraid to make my issues known at work, not just autism (if I ever get a proper diagnosis), but also depression. That said, although it’s illegal to discriminate based on illness or disability, it doubtless does still occur, so I would be wary of admitting to anything before I’d actually signed a contract, otherwise they might suddenly “discover” that I’m not the best candidate.
On which note, I have an interview tomorrow at the library of a London university (there are enough of those for that to be vague and anonymous). I only found out about this late yesterday (although I heard I was potentially up for it last week to be fair), so I haven’t done any preparation. This may be self-sabotage on some level, as I’m terrified of getting another job and doing badly at it. Because I was at the autism workshop this afternoon, I couldn’t do any preparation then either.
At the autism workshop they spoke about “spoon theory,” which I had heard of before, but not really applied to myself. The idea is that everyone starts the day with a certain number of “spoons” of energy. Performing tasks expend “spoons”; relaxing increases them. People with disabilities, including mental health issues (e.g. depression) and developmental disabilities (e.g. autism) often start the day with fewer “spoons” in their bank and use more “spoons” than healthy, neurotypical people in doing the same tasks. So, spending an hour working in an open-plan office might be one spoon for a neurotypical person, but two or three spoons for me, despite the fact that I’m probably a spoon or two less before I even start work. The exact number might be more or less depending on many other factors e.g. how tired, hungry, stressed, anxious, depressed etc. I was feeling.
I think “spoons” is a slightly odd way of looking at it (the Doctor Who fans reading this might be having flashbacks to Sylvester McCoy…), but I guess it makes it more concrete than talking about energy levels in a vague way as I usually do. Certainly I should be a lot more forgiving of myself. Talking about “reasonable adjustments” in the workplace made me realise how little leniency I give myself. This applies not just to autism (which technically I’m not diagnosed with yet), but to depression and social anxiety, even though I was diagnosed with those fifteen years ago. I expect myself to do what a healthy, neurotypical me from a parallel universe would do and get annoyed when inevitably only manage a tiny fraction of that. Nor do I really accept that things that are considered low-energy consuming or even restoring to neurotypical, healthy people are incredibly draining for me e.g. conversations with acquaintances, going shopping.
Related to this, Liora suggested the other day that I should find a more objective way to assess my activity, so I’ve drawn up a list of basic tasks I do most weeks and awarded them points (“spoons”, if you want) based on how tiring and difficult they are. I didn’t discriminate between things that are physically tiring (going for a walk) and things that are emotionally draining (socialising). I didn’t want to make it hugely complicated, so I’ve awarded 5 points for easier things and 10 for harder; I may refine this over time. I probably ought to assess my moods more often during the day too, rather than just before I go to bed, which distorts things as nighttime is a good time for me, moodwise. I’ll see how that goes.
On the way home from the autism workshop I suddenly got a migraine. My head really hurt and I felt like I was going to throw up, which is normal for me with a migraine (and for some strange psychosomatic reason even though for medical reasons I don’t fast on the minor Jewish fasts, I still get ill on them, as happened today (the Fast of Tevet)). What was unusual and frightening was shaking a lot, so much so that I felt that I could not walk and had to phone my Dad to give me a lift home from the bus stop, even though it’s only a ten minute walk away. I feel better now, but I still have a bit of a headache which is getting worse again (I probably need to eat and sleep).
This is a comment I just posted on this post on Hevria.com, about fitting in to the Orthodox community. I thought it was relevant to some recent discussion here so I’ve copied and pasted it (without my usual translations/explanations of Jewish stuff):
I struggle with this a lot. I don’t feel I’ve ever really fitted in to a community (any community, not just a frum one) and I don’t know how much is natural differences, how much that I’m almost certainly autistic (pursuing diagnosis) which makes any kind of social interaction really difficult and how much is just my depression and social anxiety making things seem harder than they actually are. It’s hard to tell how much people are really judging me and how much it’s my imagination (or my desire to see myself as a loner). Plus I find making friends really difficult. I’ve been going to my shul for two and a half years and I have about three friends, none really close.
But even though I hate standing out and would not rebel for the sake of rebelling, I find it hard to make myself fit in if it involves changing something that’s important to me (and, being autistic, even quite minor things are really important to me, if they’re part of my routine and regular way of living).
It’s complicated by the fact that I would describe myself as Modern Orthodox, but there isn’t really a vibrant MO community in the UK (I mean YU-type level of observance and outlook). I belong to a synagogue that would probably be described as moderate Yeshivish in US terms (I’ve almost never heard anyone say ‘Yeshivish’ in the UK) because it’s the best – or least worst – fit in many ways, but in some ways it’s a bad fit.
I still dress in a particular way. I’m almost the only person who wears a kippa srugah (which I don’t do for ideological reasons, but because I have dandruff and a kippah srugah can go in the washing machine which a suede one can’t!) and I’m the only person who wears non-white shirts on Shabbat. I know that this makes me stand out and I don’t want to stand out, but I don’t want to change who I am either.
There is bigger stuff that I keep private, though, certain beliefs and opinions that would not be considered strange in an MO community, but would be here, like attitudes to Torah/science controversies or academic Bible criticism. I worry a bit about people seeing my bookshelves one day. And I’m very worried about being ‘outed’ as a Doctor Who fan which does not seem appropriate. (Last year a friend (not from the community) dared me to dress up as the Doctor for Purim and I chickened out. Not sure what I’ll do this year.) I worry that if the Doctor Who book I’m writing gets published, word will get out in the community and I don’t know what the response will be. People in the community own TVs, but at the same time it’s something that is not talked about and looked down on and seen as a concession to weakness.
The other hard thing is being single. So much of the frum community is geared up to families. Being an “older single ” (I hate that phrase) is tough. I try to force myself to go to family social events at shul sometimes, but I’ve noticed I’m the only single/childless person there. There are a few other singles in the community (I think mostly divorced/widowed rather than unmarried), but the community basically assumes, with some justification a life trajectory that goes: school –> yeshiva/sem –> marriage –> children and career/housewifing. I’ve missed almost all the points on that flow diagram and it’s difficult.
Of course, the difficulty talking about autism or depression and social anxiety only adds to the issues – I mean the general stigma around them in any community, not just the frum one (although in the frum world we add in lots of “Bad for Shidduchim” fears too).
Funnily enough, because I mix in non-Jewish communities (autism and mental health support groups and blogs, Doctor Who fandom), there I experience the opposite, where instead of being the super-progressive and rebellious one, I worry that every sees me as reactionary and bigoted or at least really backwards. So I don’t feel that I fit in completely there either, although I do feel the mental health communities and fandom can be more welcoming in some ways.