I feel I wasted a lot of the day. I helped Dad put up the sukkah (the temporary hut/dwelling in the garden where we will live (in reality, eat) for the Sukkot festival starting next Sunday evening) today. It’s not finished, but we have some time still. But doing that made me worry about how E and I will cope with living together and running a household when both of us have mental health issues, diagnosed or possible neurodivergence and low energy (from possible sleep disorders or something else). I worry a lot about how we will cope with having kids. We both want to have kids, but it’s hard to work out if we could cope, and for fertility reasons, we can’t really push the decision off in the hope our physical and emotional health improves.

Whether because of these worries or because of autistic exhaustion, I lacked energy and motivation today. I procrastinated a bit, then did some Torah study. I wanted to go for a run, but I started getting a headache. Then I thought about going for a walk, but the headache started turning to a migraine. The headache did go eventually, but by that stage the day was over, aside from skyping E in the evening.

***

I was thinking of my mental illness history in the past tense, then realised I still have social anxiety. Why do I always downgrade my social anxiety, as if it’s not as real or powerful (in a negative way) as my depression and OCD were? I’ve stood in the street crying on occasion because I couldn’t get past it to go somewhere. That’s a big, ongoing issue. Yet I don’t pay it attention. I’ve only once made a serious attempt to get help for it by itself, rather than alongside (and playing second-fiddle) to other issues (actually two attempts, but the second attempt is by this stage a vague hope that the NHS will provide autism-adapted CBT at some point in the future). I act as if it’s not much more than shyness, when it really is, especially since COVID (although the standing in the street crying was pre-COVID).

***

I’m still struggling with what I want to do with Facebook. I still haven’t friended most of my real-world friends. I’m not entirely sure what is motivating this. Perhaps I can’t face being reminded how different our lives are, or risking reading about their politics. FB has suggested a couple of school peers to me, but not many. I’ve only friended one friend so far, so the algorithm has little to work with there. The peers I have come across have mostly had their accounts set to Friends Only (or whatever it’s called), so I can’t play the “Compare and Despair” game (as someone on the autism forum put it).

I’ve tried to join some groups for hobbies i.e. Doctor Who and other telefantasy (not that anyone says ‘telefantasy’ nowadays). I struggled to find my ‘ideal’ Doctor Who group, one which posts regularly, but not too often (I think three or four times a week to once or twice a day is the range I’m looking for), with discussion of episodes/ideas from the programme, especially the classic series of Doctor Who, and no obligation to adore the current episodes/show-runner, although not tedious hating either. Most groups are private, so I can’t see them. From the few public groups I’ve seen, and from the blurb when I search, most groups post far too often (10+ times a day is common), are largely new series-focused for Doctor Who and feature a lot of random pictures, memes and merchandise/convention news and little discussion. I miss the days of the fan blogosphere, where people actually discussed stuff (albeit that discussion would get tagged with the annoying phrase ‘meta’).

In the end I joined three groups (one for classic Doctor Who, one for The Prisoner and one for general British cult TV). I can always leave if they’re unsuitable. I guess I feel that if I’m going to waste time online, it might as well be doing something fun. My WordPress blog feed has slowly, but surely been drying up since COVID started and I get the impression other people’s have too, so I’m looking elsewhere for online time-wasting.

***

Related to this is the issue of “finding my tribe,” which I have spoken about before. I suspect part of my current issues is wanting to find some kind of community I feel comfortable with, even if only online. Many people on the autism forum claim to have “found their tribe” there, but I struggle to do so, if only because there seems to be little ongoing group discussion or interaction. There basically seem to be three types of posts there: introductory posts; posts from relatively high functioning adults asking about specific problems; and parents of young children with autism or suspected autism (often not high-functioning) asking with specific problems or questions about assessment. There isn’t the kind of general posts or ‘chattiness’ I expected, maybe inherently, given the way autism manifests, or given the way forums are structured. I suspect I will find similar issues with FB groups, including the one I want to set up. Also, my experience of autism is so related to my (real or perceived?) struggles fitting into the Jewish community that I fear that it is hard for people to relate to me and vice versa.

There’s a saying in the autism community that, “If you’ve met one person with autism, then you’ve met one person with autism,” the idea being that autistics are a very diverse group and certainly autism manifests in surprisingly different ways. So maybe it’s not a surprise that I connect with some people on the forum and not others. We probably shame some genetic differences from the mainstream, but that’s arguably not enough to build friendships and community on.

Looking at other places where people like me find their tribe, I don’t know why I think I would have lots of things in common with other Doctor Who fans, as that’s arguably even less of a real connection, although strangely I have managed to find people on my wavelength in fan circles in the past (excluding my religious beliefs and practices, though), whether in the real world in the Oxford University Doctor Who Society or on the (now largely defunct) Livejournal Doctor Who community.

I would think that Orthodox Jews would be a more homogenous group and more likely to share my outlook. After all, Orthodoxy involves commitment to beliefs and practices that are far outside the secular norm in the contemporary Western world. Even so, there are vast differences of personality, interests, outlook and so on, which, again, is probably not unexpected.

Kafka said something along the lines of he didn’t know why people expect him to have things in common with other Jews when he had little in common with himself. I feel the same way. Sometimes my interests and worldview seem to come from several different people, so broad-ranging are they (I suspect some of my opinions are actually contradictory, if I looked at them dispassionately enough), so it’s not surprising I can’t find anyone who shares them. In many ways the surprising thing is that I do have so much in common with E (despite our religious differences). Maybe we are a tribe of two? I guess it’s better than a tribe of one.

I suspect it’s more realistic to look for individual friendships in different communities, living a compartmentalised life. This is frustrating in some ways (and not at all how we are encouraged to live these days), but is probably more realistic than expecting one group of people to meet all my social/emotional/religious needs.

***

While I’m venting, there is another issue I have with the autistic community. A lot of people in it seem to have a kind of ‘reverse ableism’ whereby neurotypicals (by which they seem to mean allistics (non-autistics) most of the time, even though the two words are not by any means synonymous) are treated as a single unit who all think and act the same way, behaviour usually contrasted negatively with supposed autistic logic and calm (I think some autistics are indeed very logical, but others are just single-minded and can’t see alternatives to their own opinions, which they mistake for irrefutable logic — I have definitely done this in the past. As for calm, someone rightly said that autistics are the noisiest quiet people). This really annoys me, especially as many of my friends and family are not autistic and I am able to get along with them and don’t particularly like seeing them portrayed as universally irrational, noisy, extrovert, uncaring, deceitful, malicious and so on when this is clearly not the case.

You do sometimes find a similar anti-gentile prejudice in Jews (although not so often or so bitterly, in my experience), so perhaps any marginalised and persecuted minority will develop such a sense of superiority as a defence, but it isn’t necessary or attractive, in my opinion.

A related issue, which, again, I have fallen foul of myself in the past, is complaining, often in a very political way, about the lack of support for adult autistics without making clear what support they would actually want. I have done this, and I still feel I would like support of some kind, but if you asked me what support I would like and gave me a government budget of X million pounds for it, I would struggle to suggest what would help me. Judging by the way other people on the forum complain about a lack of support in vague terms (“There is no support for adult autistics”) and not specific ones, (“I would like more widely-available autism-adapted CBT,” for example, or some kind of specific skill/coping strategy training) I suspect I’m not the only one who has fallen into this trap.

I’m not actually sure what help I need. My feeling of, “I don’t understand people or the world” isn’t really something specific enough for someone to help me with. Things like sensory issues can manifest in such different ways in different people that it’s hard to see what type of support could realistically be available for everyone, while social skill training is sometimes dismissed as forcing autistics to fit into an allistic world. Arguably there should be more research on skills and coping strategies for autistics, but that would take a long time to come through as something that autistics could be taught.

(I realise the last few paragraphs lead me open to accusations of being a “self-hating autistic.)

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12 thoughts on “A Tribe of Two

  1. Possibly help is lacking because, as you note, adult autists are all so different no one can envision what type of help is needed, generally. Some are successful in their careers, while others need to find something that suits. Others mostly need relationship skills. And a million other things. Would it make sense to focus on one area at a time, such as social anxiety, and look for appropriate counseling, not necessarily tied to autism counseling?

    I have noticed the WP feed getting lighter ~ lots of prompts but little content. So I’ve been slowly adding more poets and writers, careful to avoid any that simply want to spam their books and not chat or contribute blog poetry/fiction. I’ve given up on Twitter again. I can’t seem to get in with the in-crowd, poetically speaking, and my tweets just collect dust.

    FB groups are difficult for the reasons you mention. Too much or too little. Meh!

    Liked by 1 person

    1. The problem with social anxiety therapy without taking into account autism is that the best treatment for anxiety disorders is CBT (exposure therapy) which tends not to work well for people on the spectrum unless it’s autism-adapted CBT. Which I’m supposed to be on the waiting list for, but who knows if/when it will happen? It’s hard to get, anyway.

      Ordinary exposure therapy did work for me for my OCD (before my autism diagnosis), but when I tried it for social anxiety (also before my autism diagnosis) it didn’t work. I think I needed more time than the ten sessions the NHS provided, so I would have to look privately, which is likely £££ unless I can find someone willing to treat me at a reduced rate (as my current therapist does). But I think I also have a problem dealing with the cognitions behind my social anxiety, whereas I didn’t so much with my OCD. The autism stops the CBT working on the cognitions.

      Liked by 1 person

  2. Love the title! I joke that I am a tribe of one! I have several times thought I had “found my tribe” only to have to re-evaluate it a year later.

    My feed is very slow also. But I think it’s because I have mainly been following people like myself – diagnosed as autistic later in life. And it looks like we go through a similar pattern/cycle following the diagnosis. At first there’s a lot of discovery – and the need/desire to find other people going through the same thing so that we can have a space to share our new discoveries about ourselves. But that’s the easy part. At some point we need to manage our autism and learn to live with our newly discovered self — and I think that’s something no one else can do for us. And then some of us run out of steam for writing – although in my case I continue to read – and comment when I feel I have something to share.

    Having spent time on both Facebook and Twitter, my impression is that success connecting with people on those platforms is pretty much determined by how well you connect with people in general — which is why I gave up. I now only use Twitter to keep up with Seattle weather and transit announcements and gossip about my favorite podcasts and AppleTV+ shows.

    With regard to family and community involvement, you are doing so much better than me. And it’s not a contest anyway 🙂

    Liked by 2 people

    1. I had noticed that you haven’t blogged for quite a while.

      Yes, I feel I need to learn to live with my autistic self, but I need other autistic people for ideas and reassurance!

      It’s not a contest, it just feels like one sometimes… 🙂

      Like

  3. I don’t think a tribe the way you are conceiving of it really exist. Even the time in my life when it arguably could have been said that I had one, it still didn’t fulfill all my religious and social needs, it didn’t accept every aspect of my identity (I couldn’t talk about depression feelings, we didn’t like the same pop culture things, and I had to keep my political opinions to myself), and it was temporary – members moved away, had kids while I didn’t, etc. – it was a temporary illusion.

    Some tough love: reading this post, I get the impression that you are trying to other yourself from people and groups that, while not a perfect fit, could help meet some part of those religious/social needs. Instead, it feels like (and maybe you aren’t, but this was my read from the post) you are dismissing a lot of people/groups because they aren’t the exact brand of your kind of Orthodox autistic Doctor Who fan. I think you’ll be more successful if you stop putting the weight of all your religious and social needs on one group and instead, focus on finding people whom you can connect with even if you don’t have everything in common.

    Liked by 1 person

    1. Re: tribes: it’s possible. I’m probably basing it on my parents, who have a ‘core’ group of friends who used to all live nearby and go to the same shul. And they mostly all do still live nearby — when our old community began to decline, they mostly moved one by one to the current community (a few went elsewhere, but are still part of the crowd and relatively local. One or two have even made aliyah, but still spend much of the year in the UK). They have other friends and friendship groups, but these are the ones they see most often and I guess on some level I feel I should emulate that.

      I think my sister has a similar core, but I’m less sure about that.

      However, I suspect my parents’ social needs, let alone their emotional ones, are very different to mine and maybe I need to think differently.

      There probably is a sense that I want a group of local frum friends with whom I can focus on religious growth in way more like a yeshiva than anything else. I imagine this goes on a lot in frum communities, particularly in Israel, but I have no idea if that’s actually the case, or if it’s one of those things where everyone acts as if it happens, but it actually doesn’t.

      Re: dismissing people: ish. I think I probably am dismissing contemporary Doctor Who fandom because I want to go back to the era when I was happier in fandom, in the early noughties or even the late noughties (when was not happy in real-life or with current Doctor Who , but I was happier in fandom). But Doctor Who is popular culture and popular culture moves on quickly and that era isn’t coming back for half a dozen different reasons. So maybe I should just try to move on. I’ve applied to join a FB group, but they haven’t let me in yet, so I don’t know how that will go.

      Orthodoxy: on the contrary, I’m terrified they will other me. As I have zero ability to read people, especially groups of people, I have no idea what I can legitimately say in Orthodox circles, particularly regarding involvement with wider culture, politics etc. or even humour and I have the huge guilt/inferiority complex over not having gone to yeshiva.

      Autism: probably somewhere in the middle in that I want to connect with people on the autism forum, but every time I think I’m getting somewhere, people post stuff that makes me question whether I’m even autistic, or stuff that just seems hate-filled ranting about neurotypicals that turns me off the site.

      Liked by 1 person

      1. I’ve known kiruv groups for young people that kinda had that growing together spiritually as a local group, but at least near me, it doesn’t seem like that exists outside of that circumstance. Maybe this is regional.

        Aren’t you changing communities to one that’s more modern? They’re that judgmental over not going to yeshiva?

        Liked by 1 person

  4. I think you are probably right that finding specific people in groups may be the way to go. Especially in smaller online groups, I think that can increase the connectedness of the group as a whole. My husband is a master at that and as a result has 4 or 5 online groups that he feels real community in. It’s not easy!

    Liked by 1 person

  5. There are undoubtedly many FB groups that wouldn’t be a perfect fit but would have interesting people in them. I can’t think of anyone who completely matches me and it seems like it would be the same for others. Book groups, especially, where my tastes are more eclectic and don’t align with very many others. You are searching for connections, and you’ll make some, even though they might not be exactly what you’re looking for.

    Liked by 1 person

    1. I went to a book group for years despite the fact that there were few people who discussed the books the way I wanted, few who even bothered to read the books, and I was usually too shy to speak up!

      Like

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