Autism + fat = bad care from doctor (who won’t listen).

Danielle writes:

I am a 26-year-old autistic college student. I’ve worked for a long time to be able to go to college; it’s not easy when you are on disability, since generally you are lucky if they give you a job coach and send you to McDonald’s, if you want to work, instead of letting you apply for scholarships to get a job that’s in your area of interest (I want to be a biomedical engineer). I live alone, which I’ve been able to do for two years now, and naturally it’s something I’m very happy about because when I live with other people, I am under constant stress. The downside to all of this is that being on disability, Medicaid is my only solution; and that means very little choice in what doctors I go to. I have a great deal of trouble with changes to begin with, and having to negotiate the bureaucracy to get a different doctor is about as impossible for me as for a wheelchair-user to walk up six flights of stairs.

I weigh 200 pounds, which is a lot for a 26 year old female. I’ve gained about five pounds per year more than average since puberty. Other than that, I’m healthy, with the exception of severely painful periods which tend to peak at a nine-out-of-ten on the pain scale, the point at which you start to vomit and/or pass out. I tried birth control pills for this problem, and they worked–with the exception that, while I’d had normal blood pressure before, I now started getting readings around 145/95 or thereabouts. Because this only happened once I had my first period while on birth control, I didn’t put two and two together until my GP had put me on blood pressure medication.

Luckily, I have spent my summer working at a laboratory researching high blood pressure. This means that after three months of study, I have something like a post-graduate knowledge of the subject–approximately as much as the average doctor. Yes, obesity can raise your blood pressure (more blood vessels to pump through), but only if you’re not downregulating your blood pressure some other way, which you usually would. What happened to the knockout mouse with diabetes and obesity (that’s right, these mice get diabetes and obesity thanks to a known genetic difference), was that they had a gradual increase of blood pressure. But my high blood pressure didn’t match this pattern, so I was pretty sure it wasn’t my obesity. And of course that led me to consider what might be going on in my own life… and the only new medication I had started since the problem began.

I had to make a couple of (rather harrowing, for me) phone calls to try to communicate to my doctor that I thought my birth control pills were causing the high blood pressure, and getting no real information out of him other than “You don’t smoke; so it has to be your weight causing your BP measurements.” I went off the birth control pills anyway. Then, when I had my first period off the birth control, my BP went back down to normal. So I tried not taking the diuretic for a day (diuretics work very fast and stop working almost as soon as you stop taking them). Still normal. Two days, still normal. After six days and still getting normal readings, including one taken by a nurse with a manual BP cuff, I called the doctor and told him I wanted to stop taking the diuretic altogether. His nurse told me I would get a note put in my file that I was noncompliant.

This is a well-reasoned decision from a person who knows what high blood pressure is and how it works, as much as anyone knows (it’s a very, very complicated thing, with several different regulatory systems affecting it, so nobody has fully described it yet). Oh, and, you know what my BP measurement was today? 121/79. I am not “non-compliant” unless I have very good reasons.

While all of this was going on, of course, I tried several times to bring up another problem I’ve been having. I mentioned my autism before, right? Well, one of the problems associated with it is that I often have a lot of trouble planning things. Without a routine, I can take ten times as long as most people when I do something because I have trouble picturing in my head what I’m going to do next and how to deal with things on the fly. I partially solve this by planning things in writing before I do them, and of course I have routines for important things like taking a shower, cleaning my apartment, or going to school or work. Wouldn’t, in fact, be able to manage either school or work without them. One thing, unfortunately, that hasn’t responded to that strategy is meal-planning, cooking, and eating. If I use a routine–as I’m doing now–I start to eat the same things every day.

Currently, my diet consists of oatmeal and a peach for breakfast, an egg-and-cheese sandwich, fruit jell-o, and yoghurt for lunch, and either frozen spaghetti or soup for dinner. I am well aware this puts me at a serious risk of nutritional deficiency diseases; I’ve seen it happen to other autistic people, and it’s just not something you want. I take a multivitamin, but that’s just not going to cover all your bases when you are eating the same thing every day. I’ve tried to bring up this problem with my doctor several times. All I ever get are pamphlets on extremely basic nutrition and recommendations about Weight Watchers.

He simply cannot seem to get it into hs head that I am not asking about weight loss. What else could a fat woman possibly ask about, right?

I’ve studied nutrition. I know exactly what a good diet consists of. The problem is that if I were to focus on getting myself a perfect diet, I would have to drop other important things like going to school. There is only so much time in your day when you have problems with planning to the point that you didn’t learn how to take regular showers until you were twenty.

My problem isn’t a lack of information about what to eat, or bad self-control, or too much fast food, or any of the other things he seems to think about me. It is that I do not have a skill I need, and have tried to learn it, but have not been successful, and would like someone to teach me. I need, probably, an occupational therapist–not a dietician or a diet support group–but when you are on Medicaid, you have to go through your GP to get anything like that. He doesn’t seem to understand why I could possibly be worried about nutritional deficiency, since I am “obviously” eating enough. He doesn’t seem to understand that nutritional deficiency can and does happen to 200-pound women, if they are autistic and eating the same thing every day just to be able to eat anything at all. I really don’t know how to solve this, and it is driving me up the wall. I really don’t want to spend another twenty years learning how to do something somebody could just have
taught me how to do…

I wonder how many other fat autistic people have this same problem. It is hard enough to get across what you mean to say when you are a typical person in a doctor’s office, let alone an autistic one. It’s even more complicated when your doctor almost certainly knows very little about autism to begin with, and wouldn’t understand that being very good at one thing–like me and biology–doesn’t mean we are that good at other things, like verbal communication skills or meal-planning. It’s even worse when you have to try to communicate these complex issues in the ten minutes he spends with you, most of it telling you that you need to lose weight.

I am getting very tired of this. I am not a doctor and I am tired of trying to do my own doctoring. Is it too much to ask for someone who is actually competent and knows more about autism than, “Oh, isn’t that what Rainman had?”

Now, if you will excuse me, there is an egg sandwich, fruit jell-o, and yoghurt waiting for me.

Posted by vesta44 on September 8, 2009

https://fathealth.wordpress.com/2009/09/08/autism-fat-bad-care-from-doctor-who-wont-listen/