My Mum has launched a new offensive in her attempts to try to find out when my autism assessment is going to be.  I don’t have the energy to do this, so I’m glad she is doing it, but I worry that we are getting caught up in NHS bureaucracy again.  The other day she was talking about trekking all the way to South London to go to the Maudsley Hospital, just to ask their receptionists when my appointment is, as they aren’t replying to emails or answering the phone.  I believe the Maudsley is the only NHS institution in the south of England that does autism assessments; there is a private clinic that does it, which we are investigating, but I vaguely recall looking into it years ago and that we would be talking thousands or even tens of thousands of pounds for a private assessment.

It would be good to know at least when the appointment is, if not to actually have it, as I do feel like my life has been on pause since last December when the charity Mencap did an informal autism screening for me which indicated that it was very likely that I’m on the spectrum after all (after having mixed messages from previous assessments and psychiatrists).  (Actually, my life was really on pause before then, since the job this time last year where I did very badly because of the noisy office atmosphere – that was when I became very clear in my mind that I’m on autism and have been misdiagnosed.)  Since then I’ve been wondering a lot about whether I’m in the right career, how I can fit into my community and what my life prospects are without really being sure what practical steps I can take to do anything about it or even knowing for sure where I fit in.

I have the fear hanging over me off being told I’m not autistic and trying to work out what that would mean, given my behaviour and ‘issues’ and how I would cope without any advice or further support.  By this stage, I feel there is something wrong with me more than “just” depression and social anxiety and autism seems the most likely candidate.  I’m not a psychiatrist, but I would be reluctant to take a negative diagnosis without some further explanation as to what is wrong with me.

Someone posted today on the autism WhatsApp group I’m on, saying they just got diagnosed today at the Maudsley Hospital.  I asked how long the process took; she said she couldn’t remember, but one to two years, mainly because her details kept getting sent to the wrong people (as a long-term NHS user, that doesn’t surprise me in the slightest).

People on the WhatsApp group were also talking about who they would tell about their diagnosis.  Very few people, was the answer.  This makes me feel bad that I want to tell lots of people, as a way of explaining away the fact that I feel my life has ended up as a failure compared with what might have been expected from someone who went to Oxford or someone who identifies strongly in the Orthodox Jewish community.  I probably have been using autism as a crutch for my low self-esteem, to explain my failures to myself, if no one else.  I don’t know how much of a bad thing that is.  When people say, “X is a crutch” they usually mean that’s a terrible thing and you shouldn’t need it, but I don’t know if that’s true.  Maybe you shouldn’t rely on it forever, but that doesn’t mean it’s not necessary at some point.  Would you take away the literal crutches of someone who had their leg amputated?

***

I wish I was still in therapy.  I have a lot of stuff that I want to talk about that I can’t mention here or to anyone else because it’s too embarrassing to me or is lashon hara (improper speech).  I’m wary of talking about other people too much here after losing friends over it.  I’m bottling things up inside of myself again which is never good, and it’s autumn, which is traditionally when my episodes of depression start or worsen.  I feel tired and run down and my eyes are itchy, which generally means I’m either coming down with a cold or I’ve been doing too much, despite feeling that I haven’t been doing very much at all objectively, but there it is.  I did do some shopping and wrote a devar Torah (Torah thought) for the first time in years, but I didn’t manage to go for a run or even a walk, nor did I feel up to working on my novel.

***

I’ve put on weight in recent years which is almost certainly a side-effect of clomipramine (as it started when I was put on it), but which is not good.  I’m overweight (although only slightly and I don’t really look particularly overweight).  I’m trying to cut back, but it’s really hard when I’ve had an awful depressing day and want to eat something small like a small piece of chocolate or a biscuit.  It’s hard to know where to draw the line.  I’ve tried asking my parents to put out less junk food on Shabbat to no avail.  At shiur it’s possibly got worse lately as the other people going to the shiur have started bringing even more food (which makes me feel bad, as when it’s my turn to bring, I can’t really afford to bring so much, being unemployed).

I don’t eat much junk food during the week, so little low hanging fruit to pick there, but I eat a little and could possibly cut to zero, frustrating though that would be on depressed days like today.  On Shabbat and Yom Tov (the Sabbath and festivals) I tend to over-eat.  I sometimes eat too much at shiur (religious class) too.  I’m not sure how much is boredom or anxiety (in social situations where there is food like shiur or kiddush), watching other people eat (particularly at shiur) or just the fact that junk food is out on Shabbat and Yom Tov in a way that it is not during the week in our house.  Maybe a mixture.  I also find it hard to draw the line with food that doesn’t come in discrete entities.  So I can eat just one biscuit or one slice of cake, but I find it harder to work out how many nuts, crisps, pretzels or chocolate nuts is sensible to eat.  Sometimes total abstinence seems easier than moderation (possibly autistic black and white thinking at work).

I’m trying to get more exercise, but that has been difficult with Yom Tov and now the days are getting shorter and the weather is getting colder and wetter, it’s not going to be easy to go out even without depression.

***

Well, now I feel too tired and depressed to read or write, but not tired enough to go bed.

11 thoughts on “Paging the Men in White Coats

  1. I hope you feel better soon!! I’m also conked from spending time with my mom, and I’m too wakeful to take a nap.

    Your country’s healthcare sounds worse than my country’s! 😮 I think you’re autistic, for sure! It must be frustrating to have to wait forever for a doctor to say as much!

    I spent years when I was younger trying to convince myself I was normal, that my brain worked like everyone else’s. I wish I could go back in time and be kinder to myself for failing at jobs and relationships. The labels just categorize groups of people, but how you see yourself is important! Who cares what a doctor thinks? If you’re autistic, you’re autistic. It’s all good! 🙂

    I hope you and I both fall asleep soon! 🙂 Sorry if I sound cranky; I’m really conked. Mother has that effect.

    Like

    1. Thanks! No, you don’t sound cranky.

      I’m not sure that I would say the NHS is worse than the American system. The bottom line is that (in theory at least) everyone can get seen by a doctor without having to pay, which I think is better. There’s no such thing as not being able to afford it. In theory. The bureaucracy and gate-keeping are another thing entirely, and, of course, resources are still finite, so the end up rationed by waiting lists and sometimes by region rather than by ability to pay.

      A lot of people do think I’m autistic. I even had a psychiatrist say that, even though she didn’t officially diagnose me. So that’s something.

      I wish I could be kinder to myself for my many job and relationship failures. I do worry how I would cope without my parents.

      Liked by 2 people

  2. How long since your GP referred you for an autism assessment?

    It may be an idea to get the GP to chase them up – Just to make sure it hasn’t been “lost” in the system , somewhere.

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  3. Hi. I hope you feel better soon. I can understand why you would want to tell a lot of people about your disability. I tell too many people about mine… But I think mine is a little different from yours. I wish I could give you advice on what to do but I really don’t know what’s best. I would think you should tell someone so you would have more people understand you in your community. Idk?

    Just count calories and walk/run every other day. Or dance… Or do a cycle of push ups (on your knees) lunges/squats and sit ups. Enough to bring your heart rate above 130. Just do one of those things for 30 minutes. Drink water. Try to just eat sweets once a week or twice. My doctor prescribed me metformin to offset the metabolic effect from my medication. I try to eat no more than 1600 calories. I do 20- 30 minutes of cardio 4 or 5 days a week. I eat a piece of fruit, almonds and protein shake for breakfast… Carbs and meat for lunch-whole wheat… A piece of fruit as a snack before I exercise.. Then meat and vegetables for supper. I’ve lost almost 5 pounds in 3 weeks. I’ve built muscle so it looks like I’ve lost more. I still eat sweets… I just try to limit them. I’m sure you know sugar prevents weight loss. Carbs metabolize into sugar. That’s why whole wheat is so important.

    Good luck on your autism assesment.

    I’m so sorry you have to go through this.

    Like

    1. Thanks for this.

      I don’t eat meat during the week for religious/ethical reasons. I do eat wholemeal bread and fruit. I don’t think I could face calorie counting at the moment. I try to exercise when I can, but often I am too depressed and short of time.

      Thanks for your comment.

      Liked by 1 person

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