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).

Parents
  • Hi, I'm sorry to hear about your issues. I was suspected endometriosis too. I had a large tumour removed from my ovary after years of going through what you've explained there. I couldnt stand some days from the pain and would worry about soaking at work so would carry spare clothes. 

    I'm still not right but im feeling so much better since the removal after a 10 year watch and wait on the NHS. I was told it was a cyst originally until I changed hospitals.

    Migraines, I've suffered since a child. I get the classic migraine, pain and sickness but so bad that if I move an inch I throw up. No pain meds helped. I saw a neurologist at one point as I started to get hemiplegic migraines if stressed (most of the time). These are similar to stroke symptoms so my left side of my body would stop working completely. I had to let people know as they thought stroke if they saw it.

    I was given tramadol for the migraines by the neurologist but I had a bad reaction which ended up with me trying to take my own life. I then realised I'm highly sensitive to most medications. 

    I was found to have a hind brain hernia, on researching this it can be due to connective tissue weakness. I also have issues with my knees tearing and I'm very flexible.

    Migraine wise, I cant take meds. Someone suggested a cefally device a few years ago. It was super pricey but I was desperate and saved. They also had a money back guarantee at the time so I tried it. I honestly thought it wouldnt work but was so desperate for the migraines to stop.

    Anyway the cefaly works so well. I still get migraines but no where near as bad as they were if I use the cefaly as soon as I get the aura.

    Ps I'm pretty sure I have asd but after trying stage 1 of the diagnosis process I couldnt cope to continue. My sister I wonder if shes asd too, she used to cut the labels from clothes, selective mutism amongst other things. 

  • 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

Reply
  • 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

Children