Do you have any health problems that are made worse by ASD, or make your ASD worse? If so, how do you cope?

Hi everyone,

I’d be really interested to hear your experiences please. I ask because I have a number of health problems and the health services available to me only seem able to deal with one problem at a time and saying to them, “Yes, but I also have X, which means I can’t do that,” just gets you a disparaging look and labelled as uncooperative or a time-waster. I am certain I’m not alone in this, and I’m certain also that looking younger than I am and lacking mature social skills only makes their criticism more likely.

In addition to Asperger’s, I also have ME, endometriosis and chronic vestibular migraine. Here a few ways in which it’s a pretty toxic combo:

1. Asperger’s and ME

- Once my brain is interested in something, it can keep going and going, and I don’t notice my body fading until I completely crash and end up bed-ridden for days. I then get so frustrated with my body getting in my way that I self harm.

- Unexpected interactions with people make me so anxious that my legs give out. The situations don’t necessarily involve people at the time, such as a letter through the door, but require fighting my corner with someone to resolve. E.g. I received a letter from HMRC on Monday fining me for something I haven’t done; it’s now Thursday and I’m only just starting to be able to walk again, but just writing about this I can feel my legs giving out again.

2. Asperger’s and endometriosis

- I worry constantly about getting my period because sometimes it comes on heavily and suddenly and soaks through my clothes. It’s disgusting and embarrassing, I hate how I can smell the blood on me even when no one can see it, and the pelvic pain makes me feel poorly generally. Even on the pill, my cycle has been all over the place, and with my ME I often don’t have the energy to clean myself up and do other basic things like feed myself, so I always end up suffering one way or another.

- I’ve always hated having to go into work on period days; my stress and anxiety levels are always off the scale and masking that impacts on my ME, so I basically end up eating, sleeping and washing, with no energy for anything remotely enjoyable pretty much all month long. I know it’s an overreaction but hey, I’m autistic.

3. Asperger’s and migraine

- Chronic vestibular migraine is weird because you experience dizziness and nausea/vomiting rather than the classic pain. The ‘chronic’ bit in my case means ‘constant’; that is to say I am never symptom-free, I just have different degrees of bad. Meds haven’t worked, and one of them actually made me suicidal. It renders me housebound and is the reason I lost my job and my business a year ago. I was earning pro-rata £95k a year as a self-employed business analyst up to that point (I say pro-rata because the migraine started only 10 months into my first year of trading).

- Makes the Asperger’s worse because I struggle to mask now, and the extra struggle when I really have to mask makes the ME worse, and the stress of knowing I struggle to mask makes the endometriosis worse (more random bleeding throughout the month).

- Since being out of work with the migraine, I’ve been told I’m not entitled to any benefits. I don’t have the physical or mental energy to fight this at the moment so I’m sleeping in my living room and renting out my bedrooms to pay my bills and mortgage. Both lodgers usually work long hours, but occasionally, randomly come home early, and it completely freaks me out. My home was my one safe place in the whole world and now I cower here like a terrified prisoner. If they come home early and I haven’t had my dinner yet, I just go to bed hungry rather than risk bumping into them in the kitchen and being forced into small talk, which just wipes me out. If I wake up in the night and need to pee, I just lie there for the rest of the night with my legs crossed until they’ve both gone to work. It’s easier on the weekends because my boyfriend is here and I can deflect things onto him, but I’m now constantly anxious in my own home which I hate. I also have noisy neighbours which I can’t get any respite from and makes my stress, anxiety and migraine even worse, and impacts on the ME too.

Sorry this is such a ridiculously long post but I’m really hoping it resonates with other adults with ASD, as it would be good to know how you cope (or don’t, as in my case).

  • I have loads of allergies and intollerances which I'm led to believe is common in women with ASD, I get into about an A4 and a half list if I have to put them all down. My GP's surgery know me as the woman who's allergic to everything, but at  least they dont' try and tell me I'm imagining it or it's not important that I'm horribly allergic to latex, or pennecillin, they do get frustrated at my pain killer allergies, basically I have paracetamol or nothing. I used to suffer terribly with my periods, I couldn't use the pill or any other hormonal stuff, caps were made of latex and I was allergic to the creams and gels. I'm so glad that I'm post menopausal and so much has settled down, but I was surprised at how many other health conditions came to the fore, like fybromyalgia. All my adult life this had been either ignored or thought of as period related, I was talking to one of my GP's about this and she said it's a flaw in medical training, if you're a woman of child bearing age then they're taught to look for a gynaeological solution.

    People always say that one should build a strong support network, thats something easier said than done, as we get older we don't have the natural "in's" with people, we don't go to school or college, we don't meet other parents at the school gate and often we dont' have collegues. Also I'm not a social person, I do have a small group of friends who I walk my dog with, but the last month it's been disrupted due to ill health and holidays, I've actually found it quite liberating. Another thing with socialising is where and how? I don't drink alcohol, there are many foods I can't eat and a few I don't like, I'm pretty much vegan due to allergies and intollerances, none of the restuarants around here cater for me, I might find a starter in one, a main course in another and maybe a pudding.

    I feel that I'd rather pay a professional to do the things I can't, than rely on friends and support networks, I find it easier to say no thanks to a professional where as with friends theres an implied obligation to return the favour, something I struggle with.

  • They're interrelated.  The stress and anxiety I experience impacts my physical health quite a bit.  However, these might not be directly attributable to being autistic, more to the lack of understanding and acceptance out there.  

  • Numours but none I personally wish to share I where them under my sleave so to speak.

  • This rings lots of bells for me too. i have had ME and also have vestibular migraine. In fact a lifetime of  problems of my brain communicating with my body and sending incorrect signals. it may be somthing to do with the fact we have around 60% more dendrite connections when we are born but not enough research on it so say how this influences health long term. Most of the women  with ASD I know have chronic  health problems and often have to confront an attitude of " What are you doing to make yourself have so many problems" which is pretty soul destroying. On the positive side we tend to be information orientated so if anyone is going to figure out how to do something about it, we will. Reducing stress is a big one and everyone talks about reducing stress, they just don't explain how to do that in a world that demands the same of us as neurotypicals. The main thing i have learned is stress is the enemy so make solo time a big priority even if it means earning less. Take magnesium, it helps. Dont drink and dont smoke and cut chocolate and coffee. Then replace them with other things you like. These seem to be the main triggers for vestibular migraine. Hope this helps.

  • Looking after kids is still a brilliant thing to do - so much reward!     And you're gettting them for the most fun years!      We're looking to move in a couple of years - we're moving to the countryside and going as far off-grid as possible - generating electricity, water-harvesting etc. to be as low-impact as possible.    I can't change the world any more but I don't have to damage it.    We're looking into hydroponics too - should be able to self-cultivate almost all fruit & veg we'll need and then barter the excess for whatever we can in the local economy.   And it will be healthier.

  • I used to be a high-flying engineer - I have literally done things to change the world.   

    That’s amazing! I envy you. I’ve never really got going with my career because health problems keep laying me out.

    I think you’re right to focus on fixing *your* world and that’s incredibly safe advice. I need to do that too, but I can’t quite give up on everything else just yet—not least because I have two gorgeous nieces (aged 4 and 20 months) and I don’t know how I’ll tell them I could have done more to fix the world when there was still time to act. I find all the news stories on climate change and biodiversity loss so very deeply upsetting that I cry—sometimes from sadness and sometimes from frustration over my inability to act.

  • Same here. My home is my safe haven. I was lucky that family encouraged me get onto the ladder. 

  • Thanks, Nessie. I always feel I have to explain that I'm not diagnosed yet, so it's nice to hear I don't have to. You're right - I wouldn't go through the diagnostic process if I didn't have reason to.

    Thank you - I'm very lucky to have supportive friends and family. It sounds like you're going through a lot as well, so I hope you have lots of supportive people around you too.

    ME sounds like it must be very challenging - hopefully you're able to take the time to rest when you need to. It probably doesn't help when sensory issues are making you tired too.

    My doctors have never overly explored the stomach issues, but my new GP does actually listen to me and she seems to be doing all the right things. Hopefully the tests will tell me if there's anything I can do differently to help myself.

    It's good to hear the paleo diet's helping with your meltdowns. I find them so exhausting; I even feel shaky the day after a meltdown. 

    Thank you - I hope you get the support you need too. Take care xx

  • I used to be a high-flying engineer - I have literally done things to change the world.    Unfortunately, due to my position, my priorities have changed from trying to fix the world to trying to fix my world.      I've handed the baton on to the next person.    Being an activist is only useful if you have the energy to back it up.

    I take Tramadol for the pain, Naproxen for the migraines (I get about 20 mins warning with flashing lights & patterns in my left eye) and the usual pain killers for managing the smaller pain.   

    Most of the things i do require a lot of thinking and preparation - I can do that from the sofa.  Smiley 

  • I completely understand.

    I also run out of energy trying to manage symptoms and treatments for my other health problems. For me, the chronic vestibular migraine has been the thing that pushed me over the cliff-edge again.

    I take magnesium for pain and COQ10 (or ubiquinol if you can afford it) for memory; it's not a cure but it does help (i.e. I feel noticeably worse when I don't take it).

    I'm worried I'll never work again either. I've lost all confidence in my health and my body's ability to function even vaguely tolerably. Well-People simply don't understand what it's like trying to live with unpredictable health, and I get sick of relatives in their 70s with more energy than me telling me to get a job. My neurologist said chronic migraine can either go away of its own accord when you hit the menopause, or get significantly worse, and there's no way of knowing which (plus, I'm only 37 so the menopause is some way off).

    Argh.

    Good and sad in equal measure to know I'm not alone.

    I suspected you were a snail-paced smarty-pants too. Smiley Out of interest, how do you cope with the frustration of your body packing up before your brain has had its fill? Or do you find you just forget what it is you were doing (because I think that's the only thing that saves me sometimes too)? I'm still trying to save the world, but struggle to do it from my sickbed as I just don't have the energy to relentlessly pester people or y'know, go out there and be seen like Greta Thunberg.

    https://petition.parliament.uk/petitions/268653

    https://www.linkedin.com/pulse/7-reasons-why-uk-should-create-new-public-holiday-planting-steele/

  • I doubt I'd get far with suing anyone - it's all standard treatments that, unfortunately, screwed me up.  

    I used to work full time managing the colitis - it was really difficult.   The addition of the brain injury made it impossible to juggle so many conflicting symptoms - as I stabilise my body from the colitis symptoms, it takes so much energy that I run out of energy.    The pain is a real problem and my memory lets me down it inopportune times.    It takes a lot of planning to guarantee a day free of symptoms - it involves taking a load of drugs that all have their major after effects.   I've resigned myself to the fact I'll never work again - my body/health is too unpredictable - so my challenge is wringing out the most *life* possible from what health I've got.

    I'm a super-qualified chartered engineer and I'm capable of doing anything - just very, very slowly Smiley

  • It broke my heart reading that. I’m so very sorry you’ve been subjected to such terrible care at the hands of those who operate under the pretence of the ‘caring profession’.

    I think my ME, chronic migraine, endo and other sensitivities are all largely down to my inability to process stress too, as there is no family history of any of it and I’m the only one in my family with autism too.

    It’s absolutely horrific that they put you on immunosuppressants. Have you ever considered suing them for damages? It’s not right that you’ve been left permanently disabled and having to struggle every day with all that entails because of their poor clinical judgement.

    Have you ever come across Dr Sarah Myhill? She has a strong track record of treating ME/CFS via gentler means, and helped me go from being completely bedridden to holding down a full-time job, living independently and being able to buy my first home. She also gets that, y’know, you feel like hell, so can arrange for all tests, consultations and treatments to be done remotely (via email, post and phone), which suited me perfectly.

    Do take a look at her website if you can. Even if you can’t afford the tests, there’s still loads of treatment advice you can try out for yourself, which follows her basic programme of care for all ME/CFS sufferers.

    https://drmyhill.co.uk 

    I really hope you have some better days soon. Xx

  • I do think my high pain threshold dosnt help me. Plus my husband says that I dont Express that I'm in pain! So I think I'm not taken seriously

  • My aspergers means i cannot process stress.    20 years ago, my life became very stressful and I developed ulcerative colitis - a classic stress-trigged disease.   When my life becomes stressful, my health deriorates badly.  I'm intolerant to all the normal meds so I quickly worked through them all until I ended up on some nasty immunosuppressants which took away my immune system and left me wide open for attack - I developed viral encephalitis which has badly damaged my memory and left me with CFS and chronic pain - and a number of other annoying health problems - and now I'm steroid-dependent with adrenal problems.

    And my health still deteriorates with stress.  Disappointed

  • That’s really interesting; thanks for sharing. I guess, with age, we gain greater perspective and self-awareness, which helps us develop more effective coping strategies... And, as Aspies, we’re good at spotting patterns!

    I‘m definitely more self-aware than I was a decade ago, and owning my own home has given me the autonomy I need to control my environment, so who knows how enlightened I’ll be a decade from now? 

  • I have a lot of anxiety phases. I also suffer from paranoia when stressed. I guess I've self taught myself to sort of ignore it recently in the last couple of years and even before I thought I might be on the AS. I got to 50 recently and realized I've had these periods all life and I have learned with experience and time that they'll go away. I also started stopping myself and questioning what I thought was reality or not- a great coping strategy I've found (A bit like that scientist in the film A Beautiful Mind)

  • First up, if you think you have autism, then you probably do; it’s not like most people say, “When I grow up, I want to be diagnosed as autistic,” unless they really are and are struggling every day to cope with it, so no caveats required. Slight smile

    It sounds like you’re dealing with a lot. I am sorry. I hope you have supportive friends and family because that must feel terribly isolating at times.

    I can definitely relate to what you say about anxiety and sensory issues, and the fact it acts in both directions. I used to spend a lot of time analysing and replaying conversations in my head as well, but since the ME started I just haven't had the energy to obsess quite so much, and the brain fog severely limits my memory (sometimes to the point of not even recalling having spoken to someone, much less what was said).

    I agree with what everyone has said about digestive problems, and I’m certain this is part and parcel of the autism package; we’re just more sensitive to stimuli—lights, sounds, smells, chemicals and foods. I had loads of standard hospital tests, including a gastroscopy, which I found incredibly traumatic, before eventually going the ‘alternative’ route and being diagnosed with milk and gluten intolerance. And for me, it’s the animal milk protein I react to (nausea, stomach ache, diarrhoea), so all these lactose-free products are of no use to me. 

    Because of the ME, I’m actually on a fairly strict paleo diet (high protein, healthy fats, green veg), which means I don’t really eat any carbs so avoiding gluten isn’t that hard; it’s just when you eat out and they put it in coatings (like spicy chicken) or sauces (like gravy). I’ve also found since giving up carbs, including all natural and non-natural sugars, and fruit, I’m less volatile and less prone to meltdowns. It’s boring, but it keeps me relatively well and in control.

    I really hope you get the help and answers you need to move forward. Take good care. Xx

  • Hello Mouse,

    It sounds like you’ve really suffered over the years too. In some ways, it’s heartening to know I’m not alone with all these issues, but it does make me sad and angry that there are more of us who have to fight so hard to be heard and to be helped.

    Endometriosis is hugely common and hugely under-diagnosed, which makes no sense to me, especially given how awful it makes our lives. I’m so sorry you had to suffer so long to get help.

    They only diagnosed my endo after a 14cm endometrioma ruptured and I had to undergo an emergency laparotomy, despite having spent the previous 3 years complaining to my GP about throwing up and fainting from the pain of my periods every month, and looking pregnant from the size of the mass in my pelvis (I’m fairly skinny anyway and had constant diarrhoea because my bowel couldn’t function properly from the mass, but still this didn’t set any alarm bells ringing). They also treated me pretty appallingly when I was taken into hospital too (“attention seeking”), despite the fact I could barely breathe from the amount of blood that was filling my abdomen and preventing my diaphragm from moving. They said it was “a bit of constipation” (hello, months of diarrhoea?!), gave me an enema (forcibly, which has left me prone to haemorrhoids ever since, cheers for that) and planned to discharge me the following day. Fortunately, all hell broke loose the next day when the consultant appeared on the ward and recognised exactly what was going on with me, although he suspected ovarian cancer, and I’m just grateful it wasn’t.

    I’m glad you’ve found some relief from your migraines; it must have been terrifying when the hemiplegic attacks started. I’ve give up on meds and just trying to accept this is my new normal for now. Hopefully, once I can get comfortable in a new routine around these symptoms, I’ll feel stronger and be able to face the next fight to get more help. I completely understand why you weren’t able to pursue your ASD diagnosis further; it’s all so stressful and draining when you’re otherwise well, it’s a lot to deal with when you’re not.

    Take good care. Xx