Improving Access to Health Care for Autistic Adults

When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness.  Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:

  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it

Today’s post at Autism Women’s Network touches on all of these issues plus a few more that I’ve encountered in reading other autistic adults’ experiences: Accessible Health Care for Autistic Adults

In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:

  • Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.
  • Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.
  • Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.
  • Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.

I’m sure I’ve missed things, both here and in the AWN article so, as always, I’m looking forward to your comments.

 

72 comments

  1. Sarah

    awesome! I am currently going on my 5th doctor. I cant seem to get anyone to take me seriously. I have always been a small women, I am currently at my lowest weight and fluctuating badly (88lb-93lbs) I complain to the doctors and they seem to think because I am skinny and small my weightloss is NOT an issue. I am tired and I am hungry, I cant seem to pinpoint where my pain is coming from, I just know its there. When I go to the doctors and they ask my on a scale of 1-10 what my pain is, inside I am a 10+ but on the chart I am not crying so I usually say a 6. So I do not think they take my pain seriously. I refuse to take pain meds and they just send me home. I have been getting sick on and off, fevers that come and go and I am tired, tired, tired. My body aches and I just wanna cry some days. My eczema has covered almost my entire body, and to me, that is a sign something is going on. My eczema has ONLY ever been on my hands and cheeks. EVER. I can see every bone in my body and when I lay down I can feel my stomach digesting,and even see it! I dont think 60 lbs in 2 months is normal, EVEN AFTER BREASTFEEDING! I cant gain anything and I have been to a nutrisionalist but because my stomach hurts when I eat its HARD to eat anything. I was even thinking of going as far as posting my very thin very sick body, on facebook with the title “TELL MY DOCTORS TO LOOK HARDER, BECAUSE I DONT SEEM TO BE CONVINCING THEM!” Ugh, then I think its all in my head, untill I am on the floor crying in pain and my fiance is trying to give me new doctors to see and specialists to start talking too. I have had swollen lymphnodes for over a year and my whole body just seems to be fighting itself. My eyes and head are having shooting pains and my neck is constantly stiff. I even had a doctor constantly ask about my families mental history. He never set up anything he said he was going too and kept all my past documents. He was horrible and made me feel absolutely nuts. I just cant seem to get my words out and often end up agreeing with them on ACCIDENT! They always try to describe my pain for me, or ask me if I have a pain I have not mentioned, I will say yes, because I forget, but then I feel like they think I am just going along for something and am a hypocondriact or something. FINALLY, I went to a GI and am getting an Endoscopy and ultra sound. THE only doctor to take my weight loss seriously. I hope I get answers but I have been fighting this for over a year, constantly doubting my sanity. I wish we could have an option to just WRITE instead of speak back. I could write better, it would give me a moment to think of what I needed to say. We DO need accomidations.

    • Otterknot

      Could you try writing? One of my siblings takes in notes and hands them to her doctors. It makes her much happier (she hates doctors otherwise). I don’t think she would go to a doctor who wouldn’t let her give them notes.

      I try to keep a daily Excel spreadsheet log of my health (my mental health and some physical health things, in my case). I feel like it would give me better evidence to show a doctor if I ever had a problem I couldn’t readily describe or that they might dismiss. Not that I should have to do that to be taken seriously, of course.

      Also, that all sounds terrible. I’m sorry you’ve had to go through all of that.

    • Svenja

      All the best wishes for the endoscopy and the ultrasound – I hope that they find something that is easily remedied and you get all the answers you need.

    • Karen

      Have them check your thyroid, you may be hyperthyroid. Be aware though that thyroid patients are treated lousy as well! Doctors are always telling us it’s “all in our heads”! I’ve been Hypothyroid since birth. I was closely monitored through childhood but when I became a teenager I was pretty much forgotten! Rather short-sighted in my opinion, they could possibly have learned a great deal as I grew to adulthood!

      • Svenja

        Really? Never heard that one before, I am hypothyroid as well (though that’s a recent development) and that has been taken seriously. I mean, it is easily testable through bloodwork, so how the hell could any doctor justify the claim it is “all in our heads”?

        • Otterknot

          I just recently discovered I’m hyperthyroid, and have had doctors take it seriously. Then again, I’m at the first point in the past 15 years where I feel like I’ve found doctors who are really willing to listen and to explain things to me, too. It’s amazing how much it helps my self-confidence and faith in the future to know I have a decent ‘team’ (therapists, psychiatrists, primary care physicians, specialists) to work with now. The road to find these folks was bumpy, though.

          One of the things I’ve heard (and know myself) is that with doctors, you have to be willing to go out of your way to get to good ones. I’ll drive for an hour or two to get to a good doctor, even though it’s a pain and wipes me out for the rest of the day (or several days). This is somewhere where I think ASD patients have extra difficulties. Getting to good doctors can involve going far, physically, out of our comfort zones and has a bigger impact on our stamina afterwards than it might have on other people.

      • Sarah

        ive had my thyroid checked. After my son was born three years ago had hypothyroid and after my daughter was born, my thyroid tests normal now.

    • musingsofanaspie

      I’m adding my good wishes to all of the others here. It’s so frustrating when you know something isn’t right and keep getting told that it’s all in your head or there’s no clear explanation for it. I hope you’re able to get some answers from the upcoming procedures and more importantly to get some relief from your symptoms and start feeling better.

    • Kmarie

      Also if you can a good Naturopath tends to take Autistics more seriously. My life was literally turned around by splurging my hard earned cash on a naturopath. She changed my health issues around completely…it took longer than modern medicane to see results ( about 6 months) but it was so worth it…and it was non evasive. I often think Naturopaths are a better fit for Autistics than doctors ( although some Naturopaths are just as dismissive or have mal practice) but in general I use Naturopathy in addition to a regular doctor…I have similar issues but most are under control now and I am going for a HIDA scan and Gastroscopy to make sure in a few months too:) Good luck.. Its not all in your head…I also don’t cry when my pain is so high. I can’t – I go mute or act strange but I am the same way…we can deal with a lot…so I admire your bravery.

  2. Svenja

    Yes, yes, yes, a thousand times yes!
    This is so frustrating – and perfectly timed as once more today I had another interaction with my family doctor that made me want to throttle her.
    She ridiculed me because I want a deformity of my feet x-rayed and because I took the well-explained and reasonable doubts my physiotherapist had on her planned course of action concerning said deformity seriously.
    (Sadly, she seems to be the lesser evil compared to all the other doctors I have had so far – there seems to be a magical law of the universe that either doctors or their personnel HAVE to suck, it is not possible for good doctors and good personnel to work in the same office without the space-time continuum exploding.)
    If I press on enough, she usually takes me seriously (or at least humours me concerning referrals, and I do so enjoy getting to say “I told you so!” at least 70 percent of the cases), and she’s supportive of most things I care about, and she is perfectly willing to learn more if she doesn’t know a lot about things (autism for example), but sometimes she pulls off something like today and I am left frustrated and exhausted.
    My medical history reads like a House M.D.-episode, so I have had nearly every little bit of sucky interaction with medical personnel that is possible. If I ever were to write it all up and make official complaints, I could make about 25 doctors lose their right to practice medicine – and I wish I was exaggerating.

    And yes, do the ally-thing. This cannot be stressed enough. Ian and I never go to important doctor’s appointments without each other anymore, a lesson learned the hard way after I went completely nonverbal and hyperventilating in one particular bastard’s office who proceeded to tell me how I was wrong, a simulator and should just take the first bloody therapist who would take me – and who refused to read what I wrote when I lost my abilty to talk. Sometimes the memory of that appointment can send me into meltdowns.
    Trust me, you DON’T want to be in that situation.
    If you are afraid of not being taken seriously, don’t go alone, take a friend or family member along you trust.

    • musingsofanaspie

      It sounds like you’ve spectacularly bad luck with doctors. :(

      Taking someone along is something I should do more of. I tend to want to be a “grown up” but I think I may be sacrificing effectiveness in the name of . . . I don’t know what, really.

  3. Susan P

    Doctors in general don’t seem to have their heads in the right place even with NT people. I can only imagine how difficult it is for a person with autism. My husband simply won’t go to the doctor.

    • musingsofanaspie

      Your husband isn’t alone. I’ve heard quite a few autistic people say the same, especially among those of us who are older and have built up a series of negative experiences.

    • invisibleautistic/Robin

      I agree with you about the doctors. Many doctors seem to be set on a diagnosis (or lack thereof) and it might end up being the wrong call to make. Or they can’t see anything wrong, so there isn’t much they can do. It takes a lot of time and effort just to get the right diagnosis. I can see why a lot of people won’t go to the doctor. As for me, I’m neutral toward doctors, but I especially dislike therapists/psychologists.

      • EA

        Hi – I just wanted to say that I feel sad reading your comment about therapists, aware that people don’t typically say such things without reason. I’m sorry if you’ve had bad personal experiences, or if you know of bad experiences had by significant others. As an aspiring therapist, I’m glad to be part of the field of social work, with a professional Code of Ethics that emphasizes a strengths-based perspective and client empowerment. Like so many others, I’ve had, at best, decidedly mixed experiences with allopathic medicine, but I’ve been spared bad experiences in a therapeutic setting.

  4. phogg1953

    That really is terrible, I hope you get something sorted soon.
    My wife had similar experiences with doctors not taking her seriously, so we decided I would attend all her appointments with her and before we go in we discuss her goal we want to achieve. The idea is that most doctors are less dismissive with someone else there and I ask all the awkward questions, be a real tenacious questioner so the doctor may dislike me but my wife stays in their good books.
    And my wife is NT, I am on the spectrum.
    As mentioned in the article “Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.” I would always recommend this to anybody going to the doctors. I feel very strongly about how many medical practioners deal with people, thanks for a great article.

  5. Catherine Fowler

    Hope you feel better soon.
    I don’t think it that the doctors are not used to seeing Autistic bodies and brains. It’s probably the insurance. The doctors know they won’t make much money off of people on the spectrum.

  6. chrismears

    Another interesting post and another “Thanks” for triggering a great thread already.

    I think that our doctors are often given a great challenge. They don’t lack experience or knowledge. What they too often lack is familiarity with us, regardless of who “we” are. It must be difficult when a patient presents symptoms and needs a solution.

    I always think that I’m being helpful by info-dumping on what I know in an effort to bring that doctor up to speed quickly. Of course, these info-dump moments meet with results not unlike other similar events. Sometimes I wonder if there’s a special conversational style that a doctor expects of his patient? Sort of a “visitng the doctor small talk”. So while I’m great at info-dumping, I’m lousy at any form of small talk.

    Another challenge I’m curious about is my about is my ability to measure the magnitude of my own symptoms. I wonder if NT folks have a sure handle on what is “right” in terms of how something feels and then test a symptom against that baseline?

    • phogg1953

      “I wonder if NT folks have a sure handle on what is “right” in terms of how something feels and then test a symptom against that baseline? – If my NT wife is anything to go by then no, she seems better than me but thats not saying much as I have a very high threshold for pain and discomfort.

    • musingsofanaspie

      I don’t think I’m aware of the severity of my symptoms sometimes. The illness that eventually led to the kidney infection started with a visit to a clinic where I was told I had a high fever and the nurse who took my temperature seemed shocked that I had neither noticed nor thought to check if I had a fever. So I guess other do notice symptoms like that or are least expected to.

  7. ischemgeek

    One other thing: No bloody pain scale. I can’t put pain on a scale. My pain scale number is meaningless, b/c I may or may not be processing it well, and besides assigning a discrete value to something as amorphous as pain doesn’t make sense to me. At least let me do fractions, and give references. Like, is it a log scale? Is it linear? how am I supposed to try to quantify this?

    Doctors think I’m joking when I ask them these questions. I’m not. Pain scale makes no goddamn sense to me. Often what I do is just describe how much it bothers me and when and they’ll suggest numbers and then I say, “yeah, that sounds about right.” Or if I know the doctor is big on not prompting a patient about it, I’ll do that with someone else before I go in there. Because otherwise, I might be in the ER with pain so bad I can’t straighten up and call it a 4 because really as long as I stay still and in the fetal position it’s not that bad and the doctor mentioned that 4 and below is usually not that bad when I asked for clarification on what the numbers mean for about the umpteen-bajillionth time.

    (I’ve done that. Doctor sent me home with ibuprofen when I was having GI bleeding from a really bad stomach bug. Ever taken ibuprofen on an already really inflamed GI system? Hurts like hell. Don’t ever do that. Just protip.)

    • Beth

      Sounds like my gall blabber issues. I ignored the pain scale questions because even though it is the worst thing I’ve ever experienced I’m pretty sure there are worse sensations of pain so how could it be a ten? I eventually settled on, “worse than giving birth, worse than migraines, and bad enough to make me cry tears.” That seemed to give the doctors the information they needed, but I couldn’t rate my pain with numbers.

    • musingsofanaspie

      I totally get this. I seem to have a high pain tolerance and am good at ignoring pain even when I do notice it. Also, pretty sure pain is actually experienced on a log scale and we’re expected to rank on a linear scale, which might be a big part of the problem.

    • Sarah

      Yes I just wrote a quick thing about the scale up in my response. I agree. I hate the scale. My fiance gets mad because I will be crying one minute on the floor, the pain will just HIT me, and then after waiting like an hr to see a doctor in the ER I am no longer in the same pain so I tell them what I feel matches on the scale. I think I am so use to the pain by then that the scale is no longer valid in my opinion. Plus I can think its a 10 pain, but my face wont “match” the pictures they have under the numbers. So I usually go lower than I think I should. I feel they wont believe me if I say a ten and I am not crying like in the picture, then I feel like I am lying or making it up. It is so confusing to have the pain scale. I do not think it should be a way to determine how much pain someone is in. And if it IS. will you not take my pain seriously because its a 5 or lower?? Like, how is that pain scale used to determine my treatment? It is unfair because I suffer with so much pain for so long, but that “pain” is rarely “painful” to me. Most the time I am debating on if the pain is even enough to see a doctor, because its more like a nuisance than it is hurting.

  8. AnnaBWell

    Oh, my! Don’t we all have our histories with doctors and medical staff! I know that it feels like you are going into enemy territory when you seek medical help. Egads! it shouldn’t have to be that way. Long ago, I learned that I had to approach them with my own best interests in mind. I actually have met some very kind and generous doctors who make me teary-eyed with thankfulness that I was lucky enough to have run across them. I have also had encounters that were evil (yes, evil.) And everything in-between. Arming yourself with your own pain scale is a great start. Write it down. For me, broken bones, torn ligaments and giving birth were at the top. I thought of experiences that I actually had and could remember details about them. Near the bottom of my scale was something like the pain you feel in your shoulder after carrying a heavy purse all day.

    I have many, many body and health complaints. I “choose my battles.” I don’t want to overwhelm some one who might actually help me in some way. Good luck to everyone. Advocate for yourselves wisely. (Sorry for the lecture.)

    • EA

      My inclination is always to suggest seeking alternative medicine practitioners. That’s not a guarantee, either of character or of success, but at least the holistic orientation makes more sense to me and is often more educational and thus more empowering. My experience is that skin issues reflect digestive/immune issues. I’ve been looking into soil-based bacteria probiotics, having received a strong recommendation. I can report back in a few months… Dietary change and homeopathy are my two most successful (physical) healing modalities so far. I’m so, so sorry that you’ve been in such pain and met with so little support and help, Sarah. Thank you for another good post, Cynthia. I hope your dad’s doing alright, by the way.

    • musingsofanaspie

      I like your self-described pain scale. What a great idea. I can definitely categorize my pain based on past pain, which I think might be helpful to a doctor. “Hurts less than childbirth but more than a broken toe!” :-)

  9. AnnaBWell

    Wowee, I just read your blog about interoception, and I realized (again) how difficult it is to report symptoms when we don’t know how we feel. Sort of. I have not had health insurance for 14 years after I left my last job that offered insurance. (Actually my health insurance history is spottier than that, but that is a whole other issue which could be another multi-layered story.) I do have health insurance now because of the Affordable Care Act. It could be called the affordable insurance act instead. Anyway, I digress… I just saw a nurse this week after struggling with a urinary tract infection for sometime and not knowing what I was feeling or experiencing. Sometimes I feel discomfort in a completely different part of my body. I did some research on the net (while trying to convince myself that I am not a hypochondriac. — I’m just the opposite.)
    What I recognize now is that over the decades of my life I began to disbelieve my intuition when “something is wrong.” In childhood I lived with untreated broken bones, head concussions and severe burns which blistered my entire back. My parents were mystified, because I did not complain in an appropriate manner. I knew something was wrong, but I began to believe that I was a Wuss when I was not taken seriously. I learned about my broken bones later in adulthood after getting x-rays for unrelated injuries. Doctors wondered why I did not report to them that I had had previous broken bones.
    Thank you, Cynthia, for writing this blog. It should be required reading for all health-care practitioners. (and comments, too –thank you, commentators)
    In the meantime we have to advocate for ourselves in much the same way that as women must advocate for ourselves when our heart-attacks show symptoms that are very different from men’s symptoms. (You’ve all heard that in the news — right?)

    • Svenja

      You just made me think.
      I was always surprised I had never broken a bone even though I had some ridiculous childhood accidents.
      What if I did? I successfully lived about 15 years with a foot deformity I never noticed.
      When I was 16, I was to five doctors over the course of a few months before someone realized my “cold combined with extreme fatigue” or my “She doesn’t want to go to school” was actually a meningitis combined with an optical neuritis.
      A few months before, I nearly died of a ruptured appendix I plain out hadn’t noticed.
      How far-fetched would the idea of untreated broken bones be? Or untreated other things, for that matter?
      How far-fetched is the idea that most autistic people – any of them with problems with their body perception – probably have gaps in their medical history because they plain out never noticed due to their different body awareness?
      I’m a bit scared now.

      • Otterknot

        I refused as a kid to have a throat swab even though I knew then I couldn’t get meds for strep and would get scarlet fever. And then I got scarlet fever, which is a horrible thing. Until my late teens, I completely resisted anything like shots and getting blood drawn, having dental molds or dental x-rays taken, and wearing contacts, anything where something was put *in* my body or that caused pain. And I know a sibling of mine went forever with shattered bones in her foot, and I went for several years with hyperthyroid without noticing…

        It does make you wonder, doesn’t it? I don’t think I’m experiencing pain now, but I wonder if I’d know if I was, really… I can’t write pain. I used to roleplay and could never write convincing pain reactions; I tended to write them much too slight. It’s a frightening thought, too, to know that I have a tendency to resist taking actions that can improve my own health (throat swabs, etc.). I feel like I have a general tendency to resist even minorly challenging actions or changes that could help me in the long term, health-wise and just in life in general… Like I’d like to buy property one day, but even reading about it seems impossible…

        Of course, once I do notice something health-wise, I fixate on it!

            • Otterknot

              I had just read your comment but my own thoughts didn’t feel quite like a reply. I’m glad it still worked as one! I think part of why ASD people I know (self possibly included, though I’m not diagnosed and may not be ASD) come across as hypochondriac sometimes is because we’ll go from really unaware of our bodies to hyperaware–or the problem’s far enough along by the time we notice that it’s a big problem that fixating on it actually makes some sense. I share your fear of not *knowing* what I should know about myself.

              For scarlet fever, I’m just lucky it didn’t hurt my heart or my eyesight or anything. I let people take throat swabs now ;)

              • Svenja

                I didn’t even know it could still do that in our times – I had it when I was around four, I believe. But it is more or less considered a child’s disease like measles or chicken pox around here (at least I was never told otherwise).
                We don’t do throat swabs here, either – the differences in medical practices are absolutely fascinating, aren’t they? When they are not frightening, that is.

                If you think you have ASD, that’s good enough for me and probably anyone who reads this blog. Which you have probably already gathered from all the things Cynthia wrote on self-diagnosis. But I wanted to say it.

                And yes, going from not aware to hyperaware is something that can be very frightening. And frustrating if a doctor thinks you are purposefully playing up symptoms for attention, or just don’t notice that it is all caused by you not wanting to go to school, or all the other bullshit I have heard over the years.

                It especially rang true in regard to my ruptured appendix. I was slowly getting out of a very depressive phase at the time, which always lessens my body awareness, which can be sketchy on good days. It started to slowly creep up on me that something was wrong. First everyone around me was convinced I must be horribly sad. Then I was starting to feel weird, weak, dizzy, I had trouble standing. Everyone else seemed to see much more of all of it then I could perceive, which was even more frightening. In the evening my stomach started to “slightly hurt” – the pain was dampened, I felt miserable, but couldn’t pinpoint why or how. I must have somehow showed it hurt like hell, because I ended up in the hospital – and in emergency surgery on the very next day, with a ruptured appendix and a belly full of pus.
                The stars knows what would have happened if this had been in a few months earlier, when I was still in full-on situational depression. (I think that’s the term? When you are not clinically depressed, but due to something that happened? Someone correct me if I got it wrong, okay?)

                • Beth

                  I think that ‘Situational Depression’ is the right term.

                  For me the problem has been that I have gone undiagnosed and I used to worry that my sensory sensitivities were symptomatic of something. Why did things hurt (or not hurt when they should)? Why was I always so tired? Why was I always so sensitive to the cold? I would get my thyroid checked every two years, and my iron levels, but my old doctor was usually pretty understanding and would simply run the tests. I would be told over and over that nothing was wrong, but one year my doctor was running being schedule and I was shuffled to the locum. She was awful. She was the one who tried to get me to take antidepressants. She treated me like nothing I was saying had any bearing on reality. At the time I had been battling a staph infection on my face made worse by my intolerance to the cold. I kept telling her that I thought that the bacteria might have spread. The next week when I went in to see my regular doctor to get the test results my regular doctor apologized for the locum and took my concern about the infection seriously. Everything cleared up and my desire to sleep sixteen hours a day was reduced to something closer to my own personal normal.

                  What bugged me about my experience with that particular locum was the way she treated my normal state as depression and acted like I was *more* depressed because I was suddenly sleeping like crazy. She wouldn’t believe me that I wasn’t depressed and that my usual quiet life made me happy. She couldn’t accept that my concern might be valid because my description of my own personal normal met her idea of depression.

                  My experience with doctors has been about half and half. Some good some bad.

                • Otterknot

                  Huh, that is a very interesting difference. I wonder where it comes from? Here, the moment you have strep, you get a throat swab and medication, and it usually clears the strep right out. Maybe other countries are more concerned about creating medication-resistant strep than the U.S. is?

                  That sounds like a confusing and terrifying situation. I’m glad you got through it! Depression really does seem to play hell with body awareness. I know when I’m in a depressive episode, everything outside of ‘me’ becomes unimportant, and that includes paying attention to any signals that aren’t thoughts or emotions. Physical sensation becomes something to ignore or minimize because struggling with thoughts and emotions is already challenging enough.

                  I’m working with some books on meditation, and they talk about doing body scans as well as normal meditation, where you sit and feel each part of your body in turn. That might be something I take up and try to do each day.

                • EA

                  I love body scans and other mindfulness practices, which I’ve incorporated into work with some of the children I’ve seen. I’m curious—and I realize, of course, you can only speculate here—but do you think that practicing body awareness as a child, with the support of an adult, would’ve been helpful to you?

                • Otterknot

                  That’s a tricky one. I see a lot of comments on this blog where people feel like, when they did have assistance as a child, it overwhelmed them and made them feel even more different. But I think it would have helped me, yeah. I think being taught to take some time to stay still and realize I didn’t have to seek out stimulation (I tended to *need* to be reading all the time) constantly and that my body was important (as important as my being ‘smart’) would have been useful. Just learning that my body and my mind worked together and I had to respect both would have been a gift.

                • EA

                  Thank you. I really appreciate your reply. My goal with such an activity is to invite kids to experience themselves and the present moment, to enjoy a whole-body sense of integration, peace, and happiness; to notice the workings of body and brain, both; to realize that the noticing itself is powerful; and to recognize that they can have that kind of positive experience again, whenever they need or want it, in order to foster a sense of strength. My most extensive work on this was with a girl in an unstable, high-conflict household, and she seemed to benefit from it and was able to describe with eloquence, at the end of our time together, the value of each activity for her. (She was not on the spectrum, but suffering anxiety at the beginning of the school year. With my client on the spectrum, most of our time was spent just enjoying activities of his choosing, warming up to having comfortable conversations, and that seemed to work well, too. But I’d love to find ways to incorporate mindfulness into most if not all of my work with kids, adjusting to / incorporating the needs and preferences of each one.)

                • Otterknot

                  I think that sounds fantastic. The more I personally learn about mindfulness activities, the more I feel they should be taught to all children, not just ‘different’ children, as a normal part of the school day, home life, something. It’s funny that we value, say, math or grammar, over learning how to relate to oneself!

                • EA

                  I agree completely! And I’m so glad you said that, because I’m about to start a blog on that very subject – aimed primarily at teachers and support persons, but open to anyone – on the subject of bringing mindfulness into the general classroom experience! But I’d lost a little steam since first proposing it to the faculty at my internship school, given other projects and commitments, and you have reignited the fire! Thank you, thank you, thank you!

                • EA

                  You’re the bomb, Otterknot. (Although I say that as a pacifist, so assign pacific intent thereto!)

                • Svenja

                  Well, I’m obviously not otterknot, but I thought you might like to hear my opinion anyway – because I did a lot of body awareness training as a child, from the time I was about four. I absolutely loved it and I think it helped me a lot. First the obvious way: Knowing where my body was in space for example greatly reduced how much I ran into things. (And I did that a lot. My coordination before was that of a much younger child)
                  And my ability to detect pain also was better, even though I still seemed unnaturally resilient to pain at times. Before I “decided” whether to cry or not based on whether I was bleeding or not, now it actually depended of the severity of for example how hard I hit the ground when I fell.

                  I maybe should add that I was not diagnosed at the time.

                • EA

                  You are not Otterknot (there is only one!) but you are Svenja! I’m grateful for your comment, as well! Hearing from you both is tremendously valuable to me. I’m wondering if you would be willing to share that experience (or have me share it, whichever you preferred, in whatever format felt comfortable – interview, quote, summary, guest post) on my blog about mindfulness in the school setting, which I’m just setting up? I’m trying to make it as much about other people’s thoughts, research, and (especially) experiences as possible, as I figure that will make the thing more compelling and inclusive than just a lot of my own thoughts on the subject!

                • Svenja

                  I’d love that! My brain is thinking up tons of ideas now.
                  How about we talk about the specifics via e-mail? A click on my name should bring you to the blog, and on the about-page you’ll find an e-mail adress.

                • EA

                  Super – I’ll do that. First I need to bring some order to the chaos in my space (and therefore, brain), but I shan’t forget. I’ll try emailing by day’s end, and we can take it from there! E

    • musingsofanaspie

      What I recognize now is that over the decades of my life I began to disbelieve my intuition when “something is wrong.”

      Unfortunately I think this is very common in autistic people, especially those who are taught to distrust their bodies as youngsters. :-(

      Your heart attack symptom example is a great one because it shows the power of education, both in the general public and in health care providers. I know that autism is more complicated and will take longer to educate people on, but at least things like this are a start.

  10. aspergerstestsite

    Its great when we realize we have the capacity to empower ourselves and others. Thanks for sharing about AASPIRE, its the first I have heard of this organization and will definitely check them out

    • musingsofanaspie

      I originally heard about them when they were conducting the study on the personalized reports. Their website has quite a bit of information and the report function is due out in the fall, so definitely give it a look.

  11. Barry

    I don’t understand how it’s possible to compare one pain to another. To me there’s either no pain, some pain or lots of pain, and even then the boundaries are so blurred that I can’t be sure which category a pain falls into. As to comparing pain over a period of time, how is that possible? When I look back at incidents that I guess were very painful at the time, I can remember that I felt pain, but can not recall anything about the degree of pain.

    A few years ago a kidney stone I didn’t know I had decided to move. I can remember being doubled over, feeling extremely nauseous, barely being able to breath and unable to get any words out, but I don’t remember any pain. Logic tells me that the symptoms I displayed indicate a high level of pain, but I have absolutely no recollection of it.

    As a chronic migraineur, I sometimes end up in hospital due to the stroke-like symptoms that accompany the attacks. I don’t have clear recollection of most of these occasions, and what I do have are more like snippets of a dream than reality. However, on the last two occasions I do have flashes of memory where it seems I’m being accused of being deliberately uncooperative because I can’t give the person confronting me a 1 – 10 rating for the pain.

    I’m not imagining it happened because one of the discharge documentations actually describes me as being uncooperative because I wouldn’t rate my pain scale and being uncommunicative in general. When I have one of these attacks my concious self feels isolated from my physical self. So not only do I have great difficulty in receiving messages from the physical self, it’s very difficult to get messages to it. Add the two together, and it should be obvious that any form of cooperation is going to be extremely limited. At those times I’m not even sure if I feel pain or not, let alone give it a rating.

    What is so irritating is that ask this every hour, throughout the day and night, whether one is asleep or not. I think that even a perfectly rational person would begin to feel annoyed by this. However it’s their insistence on having an “accurate” measure of the pain level that is so frustrating. Attention all medical professionals: pain isn’t always measurable. Get over it.

    • Svenja

      One thing that I have used to not scream at medical professionals:
      “Due to autism, my body awareness is pathologically horrible and varies from day to day, I cannot measure the pain. Once I had a ruptured appendix and didn’t even realize. Another time I had a papercut and cried for half an hour. All I can tell you right now is that I am experiencing pain.”
      That usually shuts them up.
      Maybe you can adapt that somehow for yourself?

      • Barry

        I would if I was cognitively capable, but alas I loose a large part of my vocabulary at those times. Add to that, the fact that I I become very disorientated and confused, so communication in any meaningful way is problematic.

        I really loathe the emergency departments of hospitals. They are brightly lit, very noisy and with a lot of hustle and bustle. I would do anything to avoid going there. They are not the best environment for someone who has migraines or is autistic. I am both, and just being there is a major source of sensory overload.

        I wear a Medic Alert bracelet describing my migraine symptoms, and also carry a note in my wallet explaining why I’d be better off at home instead of the emergency department. Unfortunately those measures have not been effective in avoiding the torture of hospital stays.

  12. Megan McKenna

    Does anyone have a similar situation with feeling to dehydrated??? I live in Arizona and have for many years, but recently I’ve found that I’m just getting thirsty and it doesn’t matter. The doctors say that everything checks out ok. I’ve been taking Prozac for awhile, but it’s never been like this before.

    • Svenja

      Your blood sugar okay?
      Maybe it could help if you wrote out a diary, when you feel the urge to drink, what you are eating, what you are doing, how much you actually drink, to see if a pattern emerges?

  13. A Quiet Week

    Wow! This was a super helpful read. My 81 year old Dad is showing a few signs of dementia, but mostly it’s just autism. I am lucky to have found people who openly listen to the information I have to share about Dad’s ASD, but it will be a great deal of work if he needs to go into assisted living. I hope people learn not only that ASD kids grow up, but they age, too. I appreciate you sharing resources that can help us. <3

    • musingsofanaspie

      I think assisted living sounds like a worst-case scenario for autistic seniors. The sensory stuff alone . . . yeah, not gonna think about it. Your dad is lucky to have you to advocate for him, especially since you’re so well-informed about autism and how it might impact aging and health issues.

      I’ve been thinking about you often these days, BTW. <3

  14. Ari

    It took doctors over 20 years to figure out that I had gender identity disorder instead of anorexia. No idea how the two could have been mixed up but they were, consistently, by every doctor until new university clinic doctor about 2 years ago finally got it right. If i had known GID was even a possibility, might not have taken so long. Or, may have been ignored, dismissed, believed crazy, as I was with so much else.

    Envious of people here who have person to take to medical appointments, never had that and unlikely ever to get. Always I prepare typed notes. That helps a lot, if doctor is predisposed to listen.

    • EA

      I’m sorry that you’re alone in the process of visiting doctors. Of course it’s not the same thing as in-person presence, but you have moral support here, at least. I hope life will surprise you and bring you more support than you expect.

  15. Pingback: A Vicious Cycle | Invisible Autistic
  16. Pingback: My Brain as it Deals with Pain | Invisible Autistic

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