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.
Hi, as others have said, take some online tests, if the scores indicate a likelihood of autism then speak to your GP or go private. A diagnosis isn’t for everyone, some people are happy to self identify. Once you start piecing it all together and looking back on life, it all of a sudden becomes very clear. I didn’t have the light bulb moment until I was 54. EDS does occur in a higher amount of autistic people. Good luck with whatever you decide.
Hi Roy, I took some tests today as suggested. On the AQ 50 I scored 38 and the RAADS-R I scored 154. I'm really surprised at the scores as I expect to score in a way that would suggest I'm not autistic or only just above the threshold. Thank you so much for your support. I think I would like to pursue a diagnosis else I'll always wonder. I think a diagnosis would be reassuring to me and would maybe help some way towards always striving to recover from what I tend to attribute to chronic anxiety which if I am autistic would mean that I could then focus my energy into accepting me for me, rather than trying to not get overwhelmed, not be so sensory sensitive not being so anxious all the time. Does that make sense? I've spent so many years trying to recover from crippling anxiety and what if it's actually because I'm autistic and unconsciously expending so much energy trying to fit into a world that's designed for neurotypical people and I'm actually not. My light bulb moment came after watching a documentary on autism in women last week, I still didn't mention it anyone.... then the other day on a video I made and put on Instagram about nothing to do with autism, a lady commented "I think you have ASD"! It was such a shock given I'd only been considering it for a few days!
Hi, Anxiety is something I’ve had since childhood, if the anxiety wasn’t so prevalent, the rest of autism I could manage better. You are right, a definitive answer is what a lot of autistic people require , I first approached my GP with what I thought was depression and was obviously prescribed antidepressants. After six months I stopped taking them, I felt no different. The time waiting for an assessment is quite useful, I’m one year into a two year wait, I’m still processing a lot of my life, the more you start to unravel it the more you start to realise you are not a bad person. I never understood why I was hospitalised when I was a young child. I’m sure you understand how hard it can be always knowing you are different but can’t piece it all together?
My wife understands a lot better now, I don’t have to attend social events anymore, I do try to if I can. My wife always asks before a hug, she can now see how it overwhelms me, noise is another problem, I’ve got noise cancelling earphones, they are brilliant. I use them to listen to audiobooks, I never understood why I couldn’t read books, I can read the same paragraph three times and can’t process it. Audiobooks have opened a whole new world for me. Have a look on Channel 4, ‘ Are You Autistic?’ It is a good program that filled in a lot of blanks for me. I also really love a series of podcasts by Sara Gibbs, it’s called Aut-hour, she interviews late diagnosed autistic authors. Sam Stein, (Yosamdysam) on YouTube has some really good videos. One that helped me was about imposter syndrome, I had masked for so long I still self doubted myself. I find with often only small adjustments, life is a lot easier to navigate. One thing I have limited is how much I’ve let family into my world. Parents I found often can’t accept autism, it’s the old saying of, “You don’t look autistic.” One piece of advice is to not try and process your life too quickly, I ended up in a massive burnout. Good luck.
I watched Are You Autistic? with my husband the other day on your recommendation. Thank you. It was very interesting, I would have fallen apart on the kitchen task and would have answered very similarly with the scenes performed by the actors. I really struggle with lying. I have a very strict moral compass and my Mum says I'm too honest. I related to the sensory part a lot. Currently at Easter disco with my little girl and the music is so loud it's painful to me. Wish I had ear defenders to put on but I forgot them. Literally counting down the minutes until we can leave.
Socialising for autistic people is often one of the hardest things to navigate. The constant masking and scripting conversations is draining. We often have totally different interests and find small talk just inane. I’ve personally practically stopped socialising, the anxiety was just too hard to deal with. Neurotypical people often want more from a relationship than we can give, they then start to think we are being rude or dislike them. I have two friends now, both are neurodiverse, we sometimes don’t speak or see each other for months but still remain friends. I loved the Chris Packham programs recently. ‘ Inside Our Autistic Minds’ he helped 4 autistic adults make short films showing how autism affects their lives and how different each autistic person is.
That's so interesting. Do some autistic people struggle to explain why they don't want to socialise? I can't even explain it to myself. It's not like I don't like my friends, I just don't want to be social but can't explain why. I'd rather read a book! I once took a book to a christening party about 14 years ago because I literally just didn't have it in me to socialise, mind you I don't know many people there but think most people would think that an odd thing to do. I still remember the book, it was Rebecca
I think this is likely the one place where something like that definitely WON'T sound confusing to any of us.
Thank you for sharing your story. I'll definitely check out that programme on channel 4. It sounds really good. I'm so glad you are finding life easier to navigate now. I'm struggling with socialising more as time goes on. Almost reverting back to how I was when I was a child. I can't explain why I don't want to do it though. I just don't. I know that sounds confusing.