Our Physicians Don’t Know Autism

I can hardly believe the ignorance that is out there. In the world in the medical field. You would think that people who practice medicine and see people every day would know more than the stereotypes of Autism.

When you go to a medical professional you hope they will understand your medical conditions not doubt them.

I’m seeing a new physician – for me this is a very stressful change. It is a new person, I am driving to a new place, they have new procedures. Being in that office with that florescent white light burning my brain is hard.

My heart is pounding and I want to run out, so I close my eyes and count my breaths. I focus on the feelings in my lungs and the darkness until I am calm. There are several moments where I must do this through the examination.

At the end I mention my Autism, expecting for her to simply add it to the chart.

I handed over the wrinkled and folded diagnosis paper that I keep on hand for emergencies if I cannot talk. Already I could tell she was questioning it’s validity. “I’m surprised she put you on the spectrum” her overly friendly and patronizing tone was something that even I could pick up on.

There was so much I wanted to tell her. Desperately wishing to educate her – I was paralyzed by her doubt. This is a medical professional before me – if SHE doesn’t know we are all in trouble.

I wish I had said more but I was now trying not to cry.

I told her that I keep most things to myself and that growing up feeling different on the inside (but not knowing why) teaches you to hide everything that is strange about you. You begin to fear your own uniqueness. So you learn to hide everything that is different about you.

You learn to blend in as a survival tool.  All my mess is on the inside.

We need more education. If our medical professionals are still stuck on the stereotypes no wonder there are so many misdiagnoses out there and so many Autistic girls being missed.

Autistic women do not follow the male Autistic stereotype – and honestly not all autistic men follow it either.

This is a big problem. Where do we even start?

#SheCantBeAutistic #AcutallyAutistic #AutismAwareness #AutismAcceptance #AnonymouslyAutistic

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49 thoughts on “Our Physicians Don’t Know Autism”

  1. I was so sad reading your post – and I think one of the most frustrating things is that physicians don’t really know very much about any illness in great depth. I’ve noticed that here in the UK, GPs tend to know the basics but I end up being the one to inform them about my Multiple Sclerosis and to push for help and support. Wishing you all the best for 2017.

    Liked by 5 people

  2. Drs do not understand mental illness… the WORST part is, they act like that’s okay! Like that’s not their department. I had to Dr shop to find one with mental health experience. It is worth the search… 🙂

    Liked by 2 people

  3. It saddens me to know that there are still medical professionals, I repeat MEDICAL PROFESSIONALS, who sometimes can’t tell what is what. I have unfortunately faced this kind of thing before, not directly but indirectly through someone close to me. Without going into too much detail all I can say is that if the doctor had known what they were doing things would have been VERY different. I try to remind myself they even though they are doctors they are still human and will make mistakes, but still it would at least make me feel better if they learned from their mistakes, but the sad thing is that most of them don’t. Sorry went into a bit of a rant there, anyway, I hope things turn out okay for you, I said it once and I’ll say it again, you are not alone.

    Liked by 2 people

  4. I do not give doctors much “praise” in the area of understanding and compassion. They also need to learn to believe and trust what a patient is saying.

    Again, please pardon my ignorance, but is anxiety a major part of autism? My brother who is autistic experiences a lot of anxiety.

    Praying for a better new year for you.

    Liked by 4 people

    1. Liz, anxiety isn’t part of autism, but it’s extremely common among autistics. I received a formal diagnosis for HFA, less then half a year ago. The diagnosing psychologist told me that the brain scan she did (she was very thorough) showed a lack of emotions; I don’t feel anxiety. The psychologist did tell me that most autistics are loaded with feelings of anxiety.

      Anna, I saw a dentist last year for a procedure. I went back to the same dentist just a month later, and the nurse put sunglasses on me. I would’ve just assumed that they just noticed I was very sensitive to the overhead light, but the during the first visit another nurse told me dentist has a lot of autistic patients; I never mentioned my autism. Some doctors are more observant (or better trained, or both) then others.

      Liked by 2 people

  5. Such a hard question to answer: where do we start? You’re right. If medical officials don’t even know the real signs of autism, how will anyone else? The only way that I know is to continue speaking out. Dont let your voice be silenced by ignorance. Speak loud, speak proud!

    Liked by 2 people

  6. I’m sorry you had such a bad experience. I ddn’t with a doctor but I recently did with someone I know who doesn’t take my autism seriously. I admit one reason is I’m good at hiding it from this person and others. I don’t stem in front of people unless I don’t know I’m doing it. I don’t announce to everyone in the house that the reason I eat at the same times every day, or eat what’s on my plate in the same order, or dust the furniture once a week, every Monday, has to do with my living on the autism spectrum. I know it hurts. When this happened to me, I went outside, paced the side of the house, and had a good cry. Then, I took my daily antedepressant pill and started feeling better before going to bed. I’m thankful my doctor took me seriously when I first told him about my suspicions of Asperger’s. I can only say “hang in there!” You know the truth!

    Liked by 1 person

  7. “Where do we even start?” You start by looking for a different doctor. Doctors are people, not computers, and are highly variable in what they know and in what they are good at doing. One would like more standardization in knowledge, but its just not there and wishing won’t make it so. This doctor isn’t for you, and that’s probably not going to get better with time.

    Let’s put this in perspective, which is more complex, a car or a human body? You should expect to spend more time shopping for a doctor than you would for a good mechanic, financial advisor or anyone else in a much simpler line of work. That’s if you want a good one. And remember the mantra, for anything important, second and even third opinions from professionals who don’t know each other are essential.

    Liked by 1 person

  8. People that are good at masking tend to get missed a lot. It takes a very perceptive professional who is also compassionate to spot what they need to see, be it a medical doctor or a psychologist. The ignorant ones tend to expect us to be retarded and things like that. When I read you say you were trying not to cry I wished I could have been there to hold you, it upsets me when women and children cry, and the amount of times I’ve needed someone but there’s been no one.

    Liked by 1 person

  9. You know what… FUCK that so-called-physician!
    Seriously. As a physician, part of the work is research. A major part is listening to the patient, learning that person’s history, and comparing it to others for possible CURES, and if no cure is known, or theorized in ANY form; try alleviating the symptoms. For ANY person in the medical field of aiding a patient to cite stereotypes is a lazy, good-for-nothing piece of trash that not only WASTED their education, but has thoroughly turned their back on critical-thinking; something that we ALL have and only few of us care to use.
    What THAT physician did was malpractice. You can sue for that. You have an internal mental circumstance. It can only be seen by those you show it to. It can’t be smelled, or seen at a glance; even a week-long glance. This person ignored you 100% for her/his own laziness, and personal beliefs. In the medical field, you can’t have beliefs; only facts, and possibilities.
    Sue that worthless person. Their lack of care caused you suffering, emotional pain, and worse than that, it was negligent torture. There are maybe 5 other things you can sue for to prove medical malpractice. This person KNOWS with a high belief that YOU will not do anything about it. While you cry, suffer, search for exits, and the pain lingers on, this person just moves on the next person and ruins them, or helps them based on whatever factor they have. GODDAMN that physician. This is personal for me, and it ticks me off on compare and contrasting observations and life experiences. If you have it in you, get after that jack-weed of a physician. You are the patience. NOT some subordinate child. Break that chain, and be the equal of them that you are. I’ll end my rant. Nothing left but swearing. You suffer with many things and MORE than I do. Most of the time, I swear you’re just picking my brain. Just… complain formally, or sue. hugs Damn physician.

    Liked by 2 people

    1. “Doctors don’t cure s**t!” (Chris Rock)

      A young Doctor at my practice here in Northern Ireland – we call them Surgeries – didn’t know how to convert kilograms to stone – 1 stone = 14 pounds – to measure my weight and had to depend on Google; I’m not making this up.

      I knew from GCSE Maths that 1 kilogram is 2.2 pounds. I even did a simple excel spreadsheet – I use LibreOffice on my MacBook Pro – and used those simple equations to convert kilograms to stone and pounds.

      Liked by 1 person

      1. WOW. I had always wondered how to covert pounds to stones. After some weeks, I forgot as other stuff came up. when you said he had to search google, I flashed back to my doctor doing the same thing on his laptop. I STILL can’t help but think, “You’re the highly educated person who makes 50K to 150K a year and you NEED google and wiki!?” That doesn’t inspire confidence at all. This is some scary shit here. 400 buck visit (glad I have cheap insurance) and best answer he gave was “I don’t know what to say.” He was honest but DAMNIT ALL!

        Liked by 1 person

      1. Good point. I’ll be interested to see when you come out of the closet. I guessing you say never, but my belief is that you’ll gain more and more confidence speaking on this topic, and you’ll eventually decide there’s more to be gained than lost by standing up.

        Liked by 1 person

  10. I would advise that unless you have a lot of personal support don’t go down the suing route. I’ve been there myself and it’s dreadful, they really close ranks against you and come out fighting. They have a hell of a lot to lose, and quite often it boils down to being their word against yours and little else. If you want to then make a complaint and then walk away. Find someone that listens.

    Liked by 1 person

      1. I think that bringing a couple of scientific articles about autism in adult females with me might have helped quite a bit when I disclosed my recent diagnosis to my primary care doctor. Thank goodness there are some articles now, and some are freely available. Here’s one that I think is good — and “open access” — yay!!!

        http://rdcu.be/ofSI
        The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
        Bargiela, S., Steward, R. & Mandy, W. J Autism Dev Disord (2016) 46: 3281. doi:10.1007/s10803-016-2872-8

        This was a doctor that I have liked for years; she seems warm and I never got any hostility from her. I think warmth is something I can discern and feel very drawn to.

        Liked by 1 person

  11. Wow. My son just got his diagnosis last year. I cannot believe your physician and their reaction. Medical professionals should not act in such a manner at all. They should know better that there is more to someone than just what you may see. I could have cancer but you would not know just from from our first encounter. What makes having autism any less important or significant. I wish you the best in 2017! I am getting a lot of help for my son this year and also moving him closer to my family so he can improve on his social skills. I will continue to read your blog to get more insight as I myself as parent still need to learn myself. I am educating myself and his father about autism and other disorders so that we can be more informed. Great blog and writing btw!

    Liked by 1 person

  12. You are so right, a number of “professionals” have said that to me about my son, one even went so far as to email the private psych practice we got to assess him to say she’d observed “steady and sustained eye contact” and “a deep sense of empathy towards his sister”. I had told her at the time, when she used these examples to say he’s not on the spectrum, that the eye contact was learnt and the empathy he displayed was taken directly from a film we owned. Total dismissal.
    Well the assessment was positive, high functioning autism plus gifted. The psychologist even said she had a good understanding of what we’d been up against because of the email she’d received from my daughters OT who had only met my son twice during his sisters half hour sessions. I also had that from school in 2015 when I asked to met with teacher and principal because I felt that he was Gifted, the response was that they’d seen no signs. Can’t wait to get back to school with the diagnosis and get some support!

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      1. Not necessarily, it might be that women are the most vocal. For example, I have been accused of only having very very ‘mild’ Aspergers, by someone in the medical profession with no knowledge, qualifications, or experience in the field of autism at all. Even the student with her knew more about the subject than she did and was sat there open-mouthed in shock at stupidity of the comment. Why did this person come to her erroneous conclusion? On nothing more than the academic qualifications I have, believe it or not.

        Another one again ignorant of the subject but clearly thought he was cleverer than he was, accused me, behind my back, in a letter to my personal doctor (copy of which was supposed to have been sent to me but was never sent) that I was lying about being diagnosed and simply ‘thought’ I had the condition. My doctor found this claim very strange as he had a copy of my formal eight page diagnosis right in front of him. Another one, a woman, accused me of being violent, aggressive, and dangerous, on the basis of no evidence at all because I have never been violent, aggressive, and dangerous, BUT…it was right after the Sandy Hook massacre and she decided we were clearly all like that person who committed mass murder. When I told my daughter and my brother-in-law they couldn’t stop laughing at how stupid and ignorant the woman had been. There’s just a few examples 😀

        Liked by 1 person

      2. Men are diagnosed much more often then women as autistic, so most people are going to assume, statistically that as a woman you aren’t autistic. Most people are just going to look at your autistic traits as your personal quirks; I did that for decades with my own autism. I wouldn’t assume that everybody who doubts you’re autistic is being sexist; they’re just “betting on the odds”. E.g., if a suicide bomber kills 100 people in the middle-east, you’re probably going to assume the person is a Muslim; you don’t have to be a racist to make that type of an assumption.

        Liked by 2 people

        1. You can get bad information from a doctor on virtually any topic, including back pain and ED. It all has to do with what the doctor knows and doesn’t know, the assumptions the doctor makes, and the tests the doctor chooses to run or not run. A lot of ED is related to testosterone levels, which is not part of a standard blood test for a male physical. You have to ask the doc to do it. I had a friend whose doc recommended back surgery. I pushed him to get a second opinion, and a different doc recommended 5 other things to try first — and he’s not doing the surgery. There are serious risks associated with back surgery.

          A specialist has to do 2-3 hours of reading per night to keep up with latest developments in his area. A PCP has to do far more, and many just don’t. That’s a huge problem.

          Doctors also may jump to conclusions, making assumptions based on other cases they’ve seen that might be totally irrelevant. That’s a problem. A good doc needs to be a good listener. Many aren’t.

          Finally docs don’t have the continuing education requirements that even insurance agents have. The AMA is the problem there. Does your doc attend medical conferences? That’s a good question to ask.

          If there’s a social problem, its with the high cost of medical training, weaknesses in med school programs, and weaknesses in continuing education. Weaknesses in keeping up isn’t a function of age, by the way. I know one 80 year old who’s considered an international guru on head pain.

          Liked by 2 people

  13. Hi Anne,

    You are on top of it. Not everyone understands the inner struggles. I do appreciate that you don’t let this define you because you rise above the labels. That is how you are going to have victory, God willing, through all of the misunderstanding.

    Take care,

    Gary

    Liked by 1 person

  14. One of the drawbacks to being diagnosed late in life (I was 55) is that you’ve learned a lot of coping and compensatory behaviors to try to blend in, and those behaviors mask the underlying condition. It takes a patient and knowledgeable doctor to weed those out. Most doctors aren’t that understanding.

    Liked by 1 person

  15. If you can manage it (I’ve only just discovered your blog), see if you can get your next potential doctor to discuss a little of his or her medical history with you. That can be surprisingly helpful. Because I’ve known my family physician for so long, we have a good relationship, but he’s even more understanding than just years would account for, because he’s been in our shoes. (I’m not autistic, but I have conditions that are easily dismissed. My son is probably autistic, though.) My physician suffers from chronic fatigue and fibromyalgia, if I have it correctly, and spent many years being scoffed at by his own professional peers. So whatever else he can or cannot do, he ALWAYS listens with respect. That listening has saved my life at least twice, once during a severe panic episode (one of my disorders) when I got bad advice from another doctor, and once when my concern got batted around from dentist to doctor and turned out to actually be cancer. He’s also got an autistic daughter … wish I could share him with you! But due to his own health, he’s had to cut back patients. I am terrified of the day his own health will make him have to retire and I’ll have to start all over again … it takes so long to build up a good rapport. (I have lots of other specialists too, but none like this doctor.) Anyway, I’ve rambled, but knowing his medical history helps me, because I know if he tells me I’m probably off base about something, he’s not being dismissive, because he doesn’t do that. He learned that one the hard way years ago. It’s okay to ask doctors personal questions. They can decline to answer. If they are rude about you asking, they aren’t going to be a good fit anyway. If they are polite about you asking, whether they answer or not, then it shows they are willing to at least dialogue with you. It’s a good test.

    Liked by 2 people

  16. When I thought my son might have autism and I asked his ped. about it, she said she didn’t think he did, but gave me a number to call, just in case. L’m glad I didn’t go with her opinion or he wouldn’t have gotten the help he so desperately needed.

    Liked by 1 person

  17. I am on the waiting list at TEACCH NC, the gold standard for evaluation for autism. Before that, I attempted getting diagnosed elsewhere, which started with a visit to my general practitioner. What an embarrassing waste of time! I’m actually pretty convinced that the nurse practitioner AND the MD at this place are on the spectum but they seem to know NOTHING about Asperger’s or autism!! Made me feel very, very insecure and I reconsidered getting a diagnosis (until getting insurance that let me go to TEACCH). This is a sad state of affairs. They seem very resistant to patients knowing anything about themselves, their bodies, or their minds. Did I say (a resounding) “ARGGHH!” yet?

    Like

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