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.

Leave a comment

19 Comments

  1. Maybe you could write him a note and hand it to him as soon as your session starts, then he can’t interrupt you and think its all about weight. I’ve seen that tactic mentioned before and i think its an extremely effective one.

    I hope you get through to him!

    Reply
  2. lilacsigil

     /  September 8, 2009

    …but birth control pills are well-known to be a risk for high blood pressure! Can you try a different kind of pill instead, or is that limited by Medicaid. (I’m Australian and we have universal healthcare, so I’m always surprised by the restrictions and costs in your system). That doctor sounds incapable of dealing with your medical conditions, and it must be very frustrating that you can’t choose your doctors. A lot of us have to do our own doctoring – it’s not just your autism making communication difficult, it’s strong resistance from the other side.

    Reply
  3. meerkat

     /  September 8, 2009

    Ha ha, I’m a 26-year-old female college student of sorts and I *wish* I weighed a mere 200 pounds. I’m not autistic, although I’m on the aspie side of neurotypical, so I don’t know how helpful my thoughts will be, but here they are. I bet there are websites and such that post a new recipe or meal plan every day; perhaps you could develop a routine of looking at them and incorporating as much of them as seemed practical into your meals for that day or the next day? I imagine following a plan closely would be a lot of effort (I couldn’t do it) but it could just be a starting point to inspire even minor substitutions to your established pattern and that would increase the variety of foods you’re eating. I too tend to prepare a fairly limited number of dishes when I have to cook for myself, because I’m too busy with other stuff to learn new ones or make complicated things, but I have the resources to eat out once or twice a week at healthful restaurants and that leads to more variety (and less clean-up).

    Reply
  4. meerkat

     /  September 8, 2009

    Although it occurs to me that you didn’t actually ask for advice in that respect so maybe I was butting in rudely there.

    Reply
  5. What lilacsigil said.

    I know Planned Parenthood will often take Medicaid and often have doctors who are more ready to listen. Is there one in your area?

    Some practical food advice (if you feel up to it – and keeping in mind that I don’t have autism, so this may not work for you): switch out the fruit jello for apple sauce or canned fruit (if you don’t have textural or taste issues with those things) – stack them in your cupboard so that you grab a different one each day without having to think about which one you should take next, use whole-grain bread for your sandwiches, and get a variety of soups (if you can stand it, same stacking procedure as with the jello/apple sauce/canned fruit). Buy a big bag of frozen veggies and a few to your soup at night or microwave some and eat them beside your soup.

    Reply
  6. You are a very intelligent person and your doctor is an idiot. I have bipolar disorder and have trouble planning too.
    I know this probably isn’t possible being on Medicaid, but what would be helpful for you (and for me too–I can’t afford it either) is a good nutritionist who actually listens and would help with planning healthy, satisfying meals. The can of Slim Fast is NOT satisfying.
    Perhaps you could make small substitutions, such as a piece of fruit, or a small can of fruit, instead of the fruit Jello, as the previous person mentioned. She had some good advice.
    The egg and cheese sandwich will have good protein, so that’s actually a good choice. Also, make sure the soup you’re eating doesn’t have monosodium glutamate. That stuff has lots of nasty side effects. It can make a person stay hungry, and can make it harder to lose weight. I was able to get off all my asthma medications when I became aware of how unhealthy MSG is and started looking for it on labels. Many canned soups contain this foul ingredient.
    I know it’s frustrating–I’m heavy too and my doctor always wants to blame everything on my weight. I loved the time I went in for a sinus infection and the first comment out of his mouth was about my weight. Guess it was fat clogging my sinuses–ha!
    Good luck to you.

    Reply
  7. Hey Danielle- I’m so sorry you’re having trouble with your doctor, that must be so incredibly frustrating.

    I have family members who are autistic, and a mother who is religious about her food routines. Having a routine isn’t necessarily a bad thing, nutrition-wise. What about writing out 4 similar routines and rotate weeks?

    Like this:

    Breakfast-
    Week 1: oatmeal with peach and nuts
    Week 2: oatmeal with apple
    Week 3: oatmeal with banana and peanut butter
    Week 4: oatmeal with orange

    Lunch-
    Week 1 and 2: ham and cheese sandwich, apple sauce, and yogurt
    Week 3 and 4: egg-and-cheese sandwich, apple sauce, and yoghurt

    Dinner-
    Week 1: spaghetti with frozen veggies
    Week 2: can of black beans and 1-minute brown rice with salsa
    Week 3: spaghetti with frozen meatballs
    Week 4: chicken soup

    It’s okay to eat the same thing several days in a row, and long as you switch out some of the key nutrients on a rotating schedule.

    Reply
  8. I just wanted to add that my grandfather had a weekly routine he never varied for breakfast:

    Monday: Oatmeal & seasonal fruit (or raisins/grapes if fruit were out of season)
    Tuesday: Grits & seasonal fruit (as above)
    Wednesday: Cream of Wheat & seasonal fruit (as above)
    Thursday: Cream of rice & seasonal fruit (as above)
    Friday: Oatmeal again & seasonal fruit (as above)
    Saturday: Bagel & seasonal fruit (as above)
    Sunday: Omelet & seasonal fruit (as above)

    Dinners were somewhat similarly regimented with the exception of Wednesdays and Saturdays during Farmer’s Market season when dinner would be fresh meat/veggies/fruit/bread found at the market.

    Reply
  9. Anon

     /  September 8, 2009

    One way that I have found to get the recomendations to see a specialist I think i need to see is to look up the specialist, call the specialists office and ask the person who answers if you can arrange to speak with the doctor for a 15 minute phone interview to determine if you need to arrange to see the doctor.
    Explain to the specialist in brief why you think you need to see her and say ‘im having a difficult time conveying my need to my general doctor, if you think you can help me, can you send a letter to my doctor asking for the referal?”

    This way the specialist can get the referal paperwork directly from your doctor and you won’t have to try to ‘convince’ him.

    I realize calling up a strange doctor might be difficult for you, but maybe you could write down what you want to say or practice it a little to make it easier. Also, write down the name of your general doctor, his phone number and have it in front of you to give to the specialist.

    Reply
  10. I’m sorry that your doctor is so difficult.

    I just had a thought about your meals that may be COMPLETELY unhelpful so please feel free to ignore me. I have some friends who are very pressed for time, and so don’t have time to plan meals every day. What they do instead is make several family sized recipes or meals on Sunday and then put them in one serving containers and freeze them, so all they have to do is pull one out and heat it up. Something like this might make it easier for you to have more variety in your diet throughout the week as you’d only have to actually cook things one day a week, and the rest of the week you would follow the same routine of heating up your food.

    Reply
  11. Your doctor sounds like a complete asshat! I don’t know how much choice you have in your area, but I know from friends that finding and switching providers who take medicaid or medicare here is a nightmare. I’m also having the issue with food from a caregiver standpoint. My boyfriend has every-other-weekend custody of his autistic teenager at our house. At his mom’s house he eats the same thing every day and within a very limited range (just tuna helper, cereal, PB&J, and mac & cheese). I try to make healthy varied things when he stays with us, but he won’t eat them because he’s used to his routine. I’ve no idea whether it’s more important to not push his boundaries, or to get the occasional fruit or vegetable into him.

    Reply
  12. Piffle

     /  September 8, 2009

    I don’t know much about autism; but if this is a common problem for people with autism, would there be some internet site with flexible eating plans already created? It sounds like you need to recreate the wheel if you do it yourself, can you use something someone else thought of?

    Or maybe you could ask The Fat Nutritionist or BodyLoveWellness if they know a resource you could use. You can find their sites on the Shapely Prose sidebar (kateharding.net).

    Best of luck

    Reply
  13. Gail

     /  September 8, 2009

    I think you should print this out and mail it to him. Call to see if he got it and read it. Then take a copy with you just to make sure he reads it. You have expressed your feelings and concerns really well and he needs to see this. Even if you decide to see another doctor maybe this will help him open his mind a little.

    Reply
  14. MargB

     /  September 9, 2009

    I was just about to type what Gail said. Is there a counselling service or student advocate at your college? Maybe, once they read what you have written so beautifully, they could act as an advocate for you with your GP or help find you a better GP. Good luck. You sound like an amazing person who can make a huge contribution to society – if people like your GP don’t keep on putting roadblocks in your way.

    Reply
  15. Hi, Danielle.

    I’m also autistic, and seriously empathize with everything you’ve mentioned. I don’t have a whole lot of routine-dependency, though, and I eat a really varied diet — the only dietary issue I have is finding times to eat when I am not nauseous — but you might find this fourpart series of posts on keeping oneself fed helpful.

    They’re by an autistic engineer named Anne C., who does need a lot more routine and structure.

    I also agree with the other posters that this doctor is being an overbearing jerk. Do you maybe have a family member whom you could make privy to your health information, and allow him/her to come with you to doctors’ appointments? Maybe they could speak up when he starts going off on his weight-loss rant: “She doesn’t want to lose weight; she just needs to make sure she’s getting good nutrition!” or “We think her birth control pills were causing her high blood pressure! See, the blood pressure went down when she went off them!”

    (Of course, when I was in college I was very near my parents’ home; it might be that you don’t have that option. But, if you do have it, and you have a relative you trust/are close enough with that you think they would be a good advocate for you, you might bring them in next time, and ask the receptionist what you have to sign to give this person access to your medical information).

    Reply
  16. If you have the money and access to transportation and/or are near restaurants, maybe you could eat out a few times a week to vary your meals. Would that be more relaxing than buying food, storing it, and cooking it, or would it feel too unpredictable?

    Reply
  17. One thing which can get (nearly) your whole slew of vitamins and minerals in, while being totally healthy and delicious, is 1 cup spinach + 1/2 cup mushrooms + 1 cup brown rice. Just heat and eat🙂. This is definitely something that you could do every day and improve your health without ever having to change it up. You can drown it in sauce if mushrooms and spinach aren’t to your liking.

    Reply
  18. I have similar issues for different reasons, and strongly second/third/fourth the “type it up and print it out” suggestion. It has worked for me with so many of my providers (and with multiple medical providers and have never yet had one who reacted in any negative manner.
    It’s far easier for me to organise my thoughts/communicate in a written fashion, it makes sure I don’t forget any issues that need to be covered, and it is faster for the providers than it would be if I tried to communicate the questions/issues/concerns verbally.

    Then they can walk through responses with me (or with my friend or partner/helper – I do always take someone with me if I can…).

    It doesn’t at all remove the stress of the interaction, but it makes it far easier for both me and the provider, and it tends to put them in a friendly/helpful frame of mind too.

    I should point out that I don’t mind “caretaker/parental” from a provider, as long as they do not CONDESCEND to me, and honestly LISTEN to me.
    My biggest deal-breaker for any provider is for them to be “hard-of-LISTENING”.

    All the best to you.

    Reply
  19. I don’t know if the OP will see this, but in case this helps anyone:

    If you’re in the US, it might be worth getting in touch with the Autistic Self Advocate Network (ASAN) at this web address: http://www.autisticadvocacy.org I’m not autistic myself, but from what I have read about what other autistic people have written, the issues you describe with having trouble making/preparing meals … or simply remembering to eat AT ALL do seem to be very common among many autistic people, including both people who have been labeled as “low functioning” but ALSO people who have been labeled as “high functioning.” (I put “low” and “high” in quotation marks because the criteria distinguishing the two often seem to be somewhat arbitrary and seem to use certain specific skills as a proxy for certain other skills that aren’t actually related…for example, people seem to assume that a person who can excel in school will necessarily also have self care skills, which I gather is not always the case for many people on the spectrum). If you do a little hunting around, I wouldn’t be surprised if there is some sort of email based or web based support group for autistic people to exchange advice and ideas on developing better self-care skills, or educating others about why they need certain kinds of assistance, and so forth.

    Or, if you’re outside the US, visit http://www.autisticadvocacy.org and explore their links, chapters, affiliates, etc. for some leads on self advocacy networks of autistic adults elsewhere. You can also try exploring some of the links at http://gdrl.org within the Disabled People’s Organization portal, and within the Global Disability Rights Library portal, or one of the other portals at the gdrl.org link.

    Reply

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