Published on 12, July, 2020
Hi everyone! I have hypermobile EDS & I'm wondering if I should ask to be assessed for autism. If anybody could say if they think it seems like something I should ask for please read on - it's a long one. Thank you. I'm female and in my late thirties. I really love routine and feel really uncomfortable doing things outside of it. I have hypersensitivity to sounds and smells, my family called me bat ears since a child. I have a rubbish sense of direction, I just can't follow directions. I can't cook (physical disabilities aside, I just can't seem to follow a recipe and get everything ready at the same time). I struggle with sleep. I can't cope with competing sounds e.g. if someone has the telly on and someone else is watching a video on their phone I find it painful, I know that sounds weird. I'm very pedantic and have to stick to the rules of everything exactly I don't just mean the law, I mean things like board games too. I've always enjoyed my own company even though I'm extroverted and bubbly but the past few years I just want to be on my own or with just my husband more and more as socialising just feels "too much", I don't know how else to describe it. As a child I was painfully shy, I had to have my Mum or Grandma come to birthday parties with me. I'm very blunt, some of my friends say if they want an honest opinion they'll come to me but my honesty gets me unintentionally in trouble sometimes and it can upset people but I don't mean to. If I get sensory overload I unintentionally self harm by clawing at my skin. I flap my hands and clap when I'm excited. I can't stand not knowing where I stand, e.g. on my second date with my husband I said "so do you want a relationship or not?" . I struggle with "free time". I always like to have a plan and know what I'm doing. As a child I was under dieticians and paediatricians for years not just because I was small for my age but because my diet and appetite was so restricted. I've got better in recent years but my issues are with textures of foods. I had a very beige diet. Even now I eat exactly the same breakfast every day occasionally having something else if I really need to. The same with lunch, although I'll rotate about 3 things.I can forget to eat very easily.
I'm always anxious. Always have been for as long as I can remember. When I'm really anxious a seat from side to side picking up each foot. Since having my little girl 6 years ago anxiety has been much more of a problem. I hate unpredictability and that's a massive part of having a child. Will she wake up in the night? Will she get up on time in the morning? Will she be grumpy? What if, what if, what if. I call people out on making sweeping generalisations, as it's not scientifically correct. I'm not interested in claims people make unless there's research to back it up. Not lately but all through my childhood and teens and early twenties I'd tend invest all my energy into one friendship at the expense of others.
One amazing friendship ended because I asked my friend why she was copying me in my twenties, it didn't go down well. I'm quirky and eccentric and always felt different to others. I've never understood fashion or why people follow it. I just wear what I like. I loved the structure of school, the routine, the timetables. I find it really hard to grasp envy. I understand it logically, but if someone else has something it doesn't affect me so why should I feel something other than happy for them? I can get very obsessive over things, not in the form of OCD or rituals but I'll get hooked on something like watching the same film over and over again. I'll miss characters from books I've finished.
The bits I'm stuck on are this that maybe don't fit with autism are these. Suddenly in my twenties I became a master at small talk which I know lots of autistic people struggle with, I suddenly got what I am supposed to do, but it's a conscious thing, that I do purposefully it was like suddenly the penny dropped "Oh this is how you do it!". I don't think I struggling with understanding what other people think or feel although I've been described as having "No shame". What my friend meant by this is I don't care what other people think of me in terms of making a prat of myself. I don't embarrass easily, as long as I'm not hurting or upsetting someone else (which I can't bear) I really couldn't give two hoots what others think of me, like what I wear etc. If other people, including friends are embarrassed by my quirky behaviour I don't understand it and see it as their problem not mine. I'm not sure if I have special interests but I'll find something and go all in, for example a few years ago this was eco living. Then it was getting a rescue cat which I heavily researched, found a cat filled in the form straight away, rung up as soon as I could about him. Then when I got him I was brushing him 3 times a day. My husband describes me as like a dog with a bone with things. I don't currently had be a special interest and I feel a bit lost because of it. However, as a child I collected anything hedgehog related, I collected broken pencil leads, 5p coins, badges, stickers, I could go on and on here. My last interest was being immersed in my work related subject but I'm too poorly to work at the moment and don't want to say what that subject is to protect my anonymity at this stage.This has been a very long post thank you for reading this far and I'd be so interested for anyone's insights as to whether this sounds like it could be autism or not. I feel so vulnerable posting this. I haven't mentioned this to a soul except my husband two nights ago.
I think the most important question is, what would you hope to get from a diagnosis? I was diagnosed last year and have found since then that there isn't really any support for us. However, my main driver for diagnosis was that I couldn't not know for certain. I think if you are of the same mind as me, it's worth persuing just for that certainty. If you're not too worried about the result, you can just go down the NHS route, but there is a C. 2-3 year wait depending on where you are. If you're more keen for answers, you could either go private or try using Right to Choose (Psychiatry UK explains the latter very well on their website).
Thank you so much for taking the time to reply. I think what I'd hope to achieve from diagnosis is an explanation for why I am the way I am, the validation that there is an actual explanation and I am not inherently weird which is what I sometimes feel I am compared to others. I know I get on other people's nerves with how pedantic I am but I just can't help myself. My goodness, I'd heard NHS wait times were long but I never realised they were that many years! Like you also, I crave the certainty. I definitely struggle a lot with intolerance to uncertainty.
Reading through your post, is say you're likely to get the diagnosis and I'd definitely say it's worth doing even just for the confirmation. It took 2 years for my referral to eventually be passed on to a private clinic, who took about 3 months to process everything (pre-assessment questionnaires and the actual assessment). You can ask you GP to refer you to a private clinic, which will probably be a lot quicker.
I know! I'm not sure if I'll cope for the same reasons! But she does allow breaks, and because it is a video call I can be in bed on my laptop and have plenty of food and drink to keep me going.
Hi Triker, thank you I'll look into this. Oh my goodness 3-4 hours in one go, I don't think I could last through an appointment that long due to other physical health conditions. It's good to know it's been recommended by others on here, that's reassuring.
Here is a link to private diagnosis which has been recommended by others here:
https://www.shropshireautonomy.co.uk/autonomyplus/pre-diagnostic
I have made an appointment with them myself which is in a week and a half! It is reasonably priced and I only had to wait 3 weeks, she replied to my email query the day I sent it. She does the pre-diagnostic 3-4 hour appointment which can be on video call (mine will be) but the diagnosis if she reckons it is autism will be with someone who diagnoses for the NHS and is recognised by the NHS so no worries there.
Thank you, that's really useful information.
I'm not sure on that one. A friend on mine had a private assessment for both ASD and ADHD, at least for the ADHD side she needs to complete some forms and essentially have the referral made again by her GP in order for the NHS to cover her medication, however, as there isn't anything that the NHS can provide for ASD, it's probably not too much of an issue from that side. My diagnosis wasn't on my records when I spoke to my GP a couple of weeks ago, but I just sent them the assessment results and they've added a note about it.
Thank you so much for reading through my super long post, that's very kind. Having read how long diagnosis can take I think I'll explore private diagnosis, but will GPs accept the diagnosis I wonder. L