Update on Autism + fat = bad care from doctor

<strong>Danielle writes:</strong>

I’m autistic. Four years ago, I had problems because my doctor prescribed birth control pills which raised my blood pressure, wouldn’t believe it wasn’t because I was fat, and wouldn’t find me help with learning how to feed myself without eating the same thing every day.
Today, thinking about my progress over the past few years, I remembered that post and I realized maybe an update would be useful or interesting. If someone else had similar problems and happened on this, maybe it would be helpful. At least it might be a source of encouragement, because it’s proof that problems of this sort can be solved.
I’m still off birth control. As I’m getting older, my periods aren’t as bad as they used to be. I know now I can’t take birth control pills, no matter how much they help with cramps, because they send my blood pressure up, but it turns out that just getting older seems to be helping me. A double dose of over-the-counter painkiller makes them bearable and I rarely lose more than half a day to them.
I’ve gotten rid of the incompetent doctor who started the whole affair. As much as I’d like to take credit for that one, it was really just a matter of luck: He retired. Nowadays, when I go to the doctor, I get decent care that’s based on my health. My doctor now agreed with my statement that eating well and exercising regularly is much more important than weighing a certain amount.
I’ve partly solved the problem of eating the same thing every day, by introducing new things into my diet, so that now I choose from a range of possibilities for my meals. When I go shopping I buy one of several possible things for each meal, and I eat whichever one happens to be closest to the front of the cupboard when I go to get food. So for breakfast I might have cereal or oatmeal or coffee and toast, or I might grab a granola bar or a banana before I go out the door. Sandwiches are still a big part of my diet, but now I have cheese and meat or peanut butter and jelly on them as well as eggs. I’ve also discovered the beauty of frozen seasoned vegetables; I can just microwave and eat them. I still eat a lot of soup and pasta, deliberately choosing things with lots of different ingredients in them, such as a soup with meat and vegetables and potatoes in it, so that I cover all my nutritional bases. I plan shopping by writing on a white board whenever I use the next-to-last of a group of items, like whenever I eat two of the last four slices of bread. When the shopping list gets long enough, I buy whatever’s on it.

The suggestions given here were helpful in sparking the first ideas for solving my own problems. Not getting assistance for so long and having to cobble together my own solutions turned out to be a blessing in disguise. I’ve discovered that I actually have a talent for adapting things for people with disabilities–not just my own autism, but for other people, too. I want to make a career out of it, designing things to be used by people with disabilities. I’ve learned computer programming. There are so many possibilities for creating helpful apps on tablets and smart phones. And, unlike some rehab engineers, I know how useful it is to talk at length to the people with the disabilities you’re designing for. They’re usually the people who know best what they need, what works and what doesn’t, and what they’ve tried. I’ve seen more than one jury-rigged solution to the everyday annoyances of life with a disability, things that you’d never think of if you didn’t talk to the person with the disability that made it useful.

I’m also finally getting some help with daily living skills–but no thanks to the medical system! Instead, my university is helping me, having assigned an aide to help me with organization and planning and a counselor I can go to when I run up against a problem I need help solving. We’re also working at getting some more permanent arrangements through the state developmental disability department.

So… advice to anybody else who’s autistic, fat, and having to go it on their own: Be creative. Try stuff. Learn about how you think and use that to your advantage. It’s amazing how creative people with disabilities can get, when we need to be. Take advantage of that! Whatever problem you’re trying to solve, there’s probably an offbeat solution for it.

Four years after the first time I posted here, I’m 20 pounds heavier, still as healthy as ever, normal blood pressure, walking two miles a day and able to outpace most of my skinny classmates on a hike. I’m nearly done with my degree, and my GRE scores look good. I’m going to be going to grad school soon. Wish me luck! 🙂

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1 Comment

  1. hpliebekraft

     /  August 20, 2013

    So glad to hear of your triumph! I can’t take birth control pills to help with my ragingly bad periods either, but it’s because the hormones cause me to become manic. (I have bipolar disorder.)
    The doctor blamed my rise in blood pressure on my weight too, but it was actually because of the fact that he’d prescribed an increase in thyroid hormone. He put me on a beta blocker, which nearly made me non-functional. I discovered I couldn’t take synthroid or beta blockers either. I now take dessicated thyroid, but I also have to take an ARB because although the dessicated thyroid doesn’t cause near the same problems, it still raises my blood pressure.
    One thing that some doctors don’t seem to realize is that if a patient says a medication is causing problems, you need to listen to the patient rather than defending the med. Also, blaming everything on weight is just bad medicine.


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