Do you think I should pursue a diagnosis please?

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?" See no evil. 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. 

Parents
  • My advice would be to take some online autism tests. AQ10 and AQ50 (sometimes called just 'AQ') are the most commonly used by clinicians in this country, but the RAADS-R is the most definitive. They can be found here: embrace-autism.com/.../
    If you score in the autism range it will give you more certainty about following up on a diagnosis.

  • Hello Martin, thank you so much. I really appreciate your help Pray 

  • Hi, I'm happy to help out. The tests are not perfect - ambiguous questions, outdated stereotyping etc. - but they do give a reasonably accurate indication of probable autistic status.

  • I Did the RAADS and scored 136. I agree with Deleted in that some of the questions confused me and I’m not keen on the multiple choices.

  • 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. 

  • 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.

  • 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. 

  • I'm going to  give the tests a go. Hopefully this afternoon. 

  • 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.

Reply
  • 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.

Children
  • I Did the RAADS and scored 136. I agree with Deleted in that some of the questions confused me and I’m not keen on the multiple choices.

  • 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. 

  • 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.

  • 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.