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 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 Martin, 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. Thank you for all the time you've invested in supporting me. I'm very grateful.
Thank you, that's really useful information.
I am diagnosed and my scores were AQ50 = 37, and RAADS-R = 167. This suggests that pursuing a diagnosis might be worthwhile, depending on how much the validation of a clinical diagnosis would be useful to you.
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.
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 your input, I honestly appreciate it so much.
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
So 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.
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'm going to give the tests a go. Hopefully this afternoon.
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.
Thank you so much for reply. I can so relate to that cycle of obsession. I'd really love to know why I am the way I am. Why I've struggled all my life with different things and why lately I've been finding things so much more difficult. I've come home from a shopping trip with my daughter and am so, so exhausted from it. You're right, only an official diagnosis would satisfy me! I wish you all the best for the journey you're on.
Yes I think there is enough there for it to be reasonable to seek diagnosis.
Hypermobile Ehlers-Danlos Syndrome is a genetic connective tissue disorder. You can't cause it by doing stretches, I hope that reassures you. I mentioned it as there's a correlation between hypermobility and autism.
oh wow i just googled hypermobile EDS, i think thats just put me off doing stretches if flexibility causes that!
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).
I think they would be much better if they actually posed questions in question form, rather than make statements for you to agree or disagree with. There are far too many questions that are entirely situational; such as the preference for visiting a museum or going to a theatre one. That would be entirely dependant on what the museum was a museum of, and what the play was and who was in it.
I agree that they aren't perfect. I struggle with things like "are you more sensitive to xy more than average?" Or "do you do this often?". I mean are you asking me what's average? My average is what I'm used to which is myself!. Well define often! Is it once per day? Once per week? ... I'm glad that someone agrees with me. Still I scored 34 on AQ. I can't really rely on it since some questions confused me.
I am in a similar place in my life. I am asking myself the same question, should I persue a diagnosis? Listing to myself all the things that I do that seem different to what most others do and ask myself, could this be autism?. It's a very hard thing to question your reality and who you are. Having a question without answer starts a cycle of obsession in my brain until I find the answer, and if it's not 100% sure then the obsession will keep going. That's why I think a diagnosis is important for me to get an answer to my similar questions. If you have this need as I do then maybe it will save you lot of stress and anxiety to go for it. If you feel like what's important is to live happily and manage your life regardless of why you live it the way you do, then maybe it wouldn't be so valuable for you. Since you mentioned that you need things to be backed up with studies and science, then I'm guessing that an answer that's backed up with science is the only one that would satisfy you??. I wish you lot of luck