• Replies 5 replies
  • Subscribers 6 subscribers
  • Views 1094 views
  • Users 0 members are here
Options
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Hypermobility and ASD

NAS87729

Hi all

Thank you for letting me join your community.

I have recently been diagnosed with Hypermobility Spectrum Disorder (Ehlers Danlos Syndrome) with several traits of autism following a lifetime of allergies. It was a consultant Allergist how diagnosed the HSD. Massively interesting because I went privately to see him as the NHS response to my many allergic issues was not helpful. The consultant spent 4-5 minutes looking at the allergic symptoms, then spent around 15-20 minutes describing my healthcare history, my clumsiness, poor digestion issues, personality and my habits and behaviours, and my Brother's, to a tee. It was as though for the first time in my life someone has seen "beyond" what I was saying for the first time in my life - I am 53.

For as long as I can remember I have had a lot of minor health issues, diagnosed on many occassions with Migraine, Irritble Bowel Syndrome, Hayfever, Anxiety Disorder, stress, depression and I have been told I dont listen to or follow the advice of the doctors, when the reality is that their advice has not worked for me, pretty much every medication I have ever taken causes a variety of fairly horrible side effects, and I got to the point where it wasnt worth turning up because it was too stressful, too owverwhelming and too upsetting being ignored and told there is nothing wrong with me. I dont think it has helped that I have a high IQ, I am highly qualified and have a senior level job in a local authority. So I basically dont fit the profole of someone who needs help, and when I have asked for help and the advice hasnt been right, I have struggled to articulate this. I have always felt different, I dont "get" things that others are saying, I hate noise and crowds, I need to know everything about a subject almost obsessively, and I struggle to function at times whenI get overwhelmed. I have had several "shutdowns" over the years, where i have needed to take take off work and have been completely unable to do anything - distressing for me, and inexpicable to thiose around me, particularly as I have had no idea what was going on. The only thing that really works for me is controlling anxiety through talking therapies, yoga and meditation and avoiding a vast array of allergens (Soya, Dairy and an array of plant proteins). I cannot take antihistimes, as they make me really poorly.

Over the course of the consultations, the Consultant diagnosed HSD, Mast Cell Activation syndrome and a number of associated behavioural traits. He asked me to research a number of things, and during the follow up consultation he very gently suggested that I have many autistic traits, which he said are consistent with what would previously have been considered Aspergers. He also said that the NHS's  policies for diagnosis for ASD is based on the observations of young boys and men, overlooking the research on the links between HSD and Autism and presentations of autsim in women.

I firmly believe I dont need "fixing", but it would be good to be understood a lot more.

My question is whether it is worth even bothering to pursue a formal assessment / diagnosis?

  • Welcome to the community. I'm the same age as you and was diagnosed a few years ago.

    NAS87729 said:
    For as long as I can remember I have had a lot of minor health issues, diagnosed on many occassions with Migraine, Irritble Bowel Syndrome, Hayfever, Anxiety Disorder, stress, depression and I have been told I dont listen to or follow the advice of the doctors, when the reality is that their advice has not worked for me, pretty much every medication I have ever taken causes a variety of fairly horrible side effects, and I got to the point where it wasnt worth turning up because it was too stressful, too owverwhelming and too upsetting

    That pretty much describes my experiences too (minus the hayfever).

    There is quite a strong correlation between EDS and autism. Despite that I believe it is very rarely picked up by NHS health systems. They just look at symptoms in isolation and never joint the dots and see the whole person. It doesn't surprise me that you had to go private to get a clued up doctor.

    There are some relevant videos from Aucademy that you may find interesting / useful:

    Ehlers-Danlos Syndromes - Issues with our tissues, with Jane Green and Chloe: Aucademy educating

    https://www.youtube.com/watch?v=kBhGJmRiuAQ

    Why Autistic people have "all the things": Mel & Si educate Aucademy

    https://www.youtube.com/watch?v=VVJxpaJAt94

    All the things - Part 2: Mel educates Aucademy

    https://www.youtube.com/watch?v=udX_dDYqGYE

    Dr Mary Doherty, healthcare barriers when Autistic: Aucademy educating with Chloe

    https://www.youtube.com/watch?v=s_8CZKmxxco

  • Many thanks for the responses, that in itself means a lot.

    Once I had got over the surprise of the HSD diagnosis, my overwhelming feeling is just one of relief! It was so validating just knowing that there is a reason for everything, and that itself has reduced my anxiety levels as I now know that my instincts were right all along.

    Then the subsequent conversation to unveil the autistic traits was a second revalation, and the final pieces of the jigsaw fell into place. The sense of guilt and shame I have carried for so long seems to have just dissipated! Things certainly make sense now., and I am certain that I am neuro-diverse, ragardless of the lack of a formal diagnosis. 

    What is weird though is the absolute wall of denial and negativity I have come across from NHS doctors. Even my best friend, who is a doctor by profession and is privately critical of a lot of medical practice in the NHS has been a bit sceptical, but she is changing her opinion after some reading up. My health is much better already, through a change of diet and stopping the antihistamines and the HRT patches. It is almost as though they have a rule that says you cant have any sort of health condition if you dont have a large bagful of medications! Luckily the practice pharmacist is a bit more enlightened, and he validated the fact that many of the medications use plant based protein carriers, making it  likely I will be unable to take a lot of them. He said that the HSD is likely to be a factor in weight management and he was worried that I was referred to weight loss services even though I had turned up for help with feeling exhausted and having daily allergic actions, without further investigations beyond some negative blood tests.

    The lack of questioning beyond the obvious doesnt bode well for another discussion with the doctor about autistic investigations, even with the consultant letters. I feel so lucky that I met one single (private) doctor who has kept up with research and as a pediatrician he said he had seen so many parents bring their kids to him with allergy issues who had exactly the same previously unrecognised problems. He said it is genetic, without doubt, and it seems for me that there was undiagnosed hypermobiliy, with behavioral traits on one side of the family, and undiagnosed Aspergers on the other - providing a perfect storm for me, as none of it is "bad" enough to have been recognised.

    I already feel as though I have the answers I was searching for, and thank you for the book titles; I will certainly take a look. I will consider a private route to confirm ASD, as I am not sure I am up to going to battle with my GP for a referral, even though it is the most obvious thing to do! I have self referred to NHS mental health services, which may be useful in the longer term, and meanwihile finding the understanding of my specific needs and finding a formula that works for me is my current plan.

    Thank you all for your help, your kindness and your understanding. That really does mean a lot

    S x

  • NAS87729 said:
    My question is whether it is worth even bothering to pursue a formal assessment / diagnosis?

    Absolutely in my opinion.

    There are a number of other conditions that share symptoms with autism so I would go private for speed and get a private assessment from an organisation who have plenty of experience of diagnosing autism in women - as Martin suggested.

    The following books may be of help for you in managing the stress / anxiety issues of autism:


    From Anxiety to Meltdown - How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively - Deborah Lipsky (2011)
    ISBN 9781849058438

    Asperger Syndrome and Anxiety - A Guide to Successful Stress Management - Nick Dubin (2009)
    ISBN 9781843108955

    I also came across the following book that looks like it may also be relevant in your situation - it does not talk about it in the context if also being autistic, but has plenty of insight into the hypermobility.


    Disjointed: Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder (2020)
    ISBN 9781734794915

  • Most of the people who comment here found an adult autism diagnosis helpful. However, it is mostly internally helpful, as external support for adult autistics of average and above average intelligence is fairly non-existent. I was diagnosed at 59, after a long career in biomedical research. Also after a lifetime of wondering why so many things seemed more difficult for me than for other people, and why I had so many strange sensory reactions. I have diverticular disease, IBS, many food intolerances and am hypermobile (though it does not cause me any joint pain).

    If you can afford it, then a private autism assessment is much faster than using the NHS, there is no need for a GP referral and many providers offer you a choice of clinicians. This means that you can choose a female clinician who specialises in adult diagnosis, which should overcome the anti-female bias in autism diagnosis.

  • Welcome! I'm the same age-ish as you and recently diagnosed. It really depends on what you want from a diagnosis. For me, I wanted to know for sure so I can do what's right for me. I already identified as autistic for a couple of years, and had been questioning for 17 years (since my child was diagnosed as a toddler). I'd been told over and over by "professionals" that I wasn't autistic, just exhausted from caring for an autistic child. However, that didn't explain the sensory overwhelm I experience, the shame and anxiety I had about socialising and struggling to be like neurotypical people. All my life I felt like I was bad at being a person. With diagnosis I got validation, and I feel at peace for the first time in my life. So for me it feels like it was worth it. Only you can decide if it's worth it for you. You can learn more about autism and see if it feels like that is you. You can see if that's enough for you. You can self identify as autistic if that feels right for you. You can change your mind later and go for formal diagnosis. There's no right or wrong way to get where you need to be. I hope the hEDS diagnosis helps with managing your physical symptoms. It sounds like the Consultant Allergist you saw is more up to speed with current research than anyone you saw through the NHS.