Autism-friendly/-aware family doctors

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I am looking for a new family doctor, and my psychologist thinks it's important for me to find one who is fairly knowledgeable about autism because of my communication problems (so that the doctor doesn't misattribute my communication issues to some problem or disorder I don't actually have).

I agree with my psychologist, but the situation is frustrating. It would be easier to find a doctor if they didn't need to have any particular knowledge or understanding of autism.

How many of you other ASDers need an autism-friendly doctor? How many of you have an autism-friendly doctor, and how did you find them? How did you educate your doctor about autism, if they knew little/nothing about it when you first became their patient or when you were first diagnosed?

I'll give you a hint. There is no such thing as a medical doctor who specializes in aspergers unless you live in a really rich area in manhattan or LA, where you can afford such a rare doctor, or at least one who isn't a complete idiot.

Other than that there are psychologists who deal with ASD, but that is a huge racket and a scam.

You're SOL buddy.

I am my own primary care physician, my own psychiatrist, my own nutritionist, and my own behavioral psychologist.

Google is your best friend. Use it.

I live in Canada and we have universal health care so my ability to pay a particular amount of money doesn't affect the quality of doctor I can see.

I know that there is no actual medical specialization (i.e. no board certification) for autism (or whatever specific ASD diagnosis a person has). But some doctors have more knowledge about autism than others, and some doctors (if they aren't familiar with autism) are more eager/willing to learn about things they aren't familiar with than others. My last doctor had more knowledge than others.

I'm not looking for some kind of autism specialist anyways, I'm just looking for a doctor who has enough basic understanding of autism that they are, at least sometimes, able to remember/keep in mind that I have problems with language/communication. (e.g. When I hand them written information rather than verbally responding to them; When I use odd/idiosyncratic language and they don't understand me; When I can't understand things said to me that they would otherwise expect me to understand based on what I say or my demonstrated knowledge of something or whatever else they use to judge what I should understand; After it comes to light that a serious misunderstanding has happened days or weeks or months after the fact, for reasons I will never know; When I can't answer a question, or take such a long time coming up with an answer that they would otherwise think that I'm just choosing not to answer rather than needing time or being unable to.)



I, too, like to take care of my health needs on my own whenever I can and I don't like doctors that are overly paternalistic. But there are limits to the medical care that a person can provide themselves.

I've gone through this for myself and our children.

1. Make a list of a few potential doctors offices. Call and ask if they have worked with autistic patients / patients with autism.
or
2. Contact any local AS/ASD groups, organizations (probably not Autism Speaks associated), etc. and ask for referrals.
and/or
3. Start trying out different doctors. Use the first appointment -hopefully one for a minor complaint - as a sort of interview.

It works but it's a lot of work. And then, eventually the doctor moves or you move and the whole thing has to be repeated. Still, it is far better than having a doctor who doesn't understand the conditions that are affecting their care-giving.

This is very helpful, thank you! I have to put together a rough script for the phone calls, and I have difficulties putting things into question-form sometimes. When I was a child/adolescent my mother found my doctors and I very much wish I had paid attention when she was on the phone.



The local autism society keeps a list of doctors for adults, but everyone on the list is either an alternative health practitioner, a specialist, or a DAN (Defeat Autism Now) doctor.

My psychologist is going to do some networking, so fingers crossed for that.



By "interview" do you mean like just seeing how it goes and how well we interact, that sort of thing?



I agree, doing a lot of work is far better than having a doctor who doesn't understand.

There is your problem right there. You live in Canada and we have some of the worst medical care in the developed world. You're not going to get help, buddy. I've been trying for years.

The system in canada is so tightly regulated, and mismanaged, the doctors can't even do their jobs.

The best my exGF can get is a 15min visit to a psychiatrist once a month.

My GP appointments last 5 minutes, I have to remind him every time what the problem is, because there is such an overload of patients he can't possibly remember. So visits to him are pointless.

My Gastroenterologist sees me for 3 minutes, and calls once every few months last minute to book an appointment. He confirmed what I already figured out using google and webmd, and diagnosed me with it.

I also live very far from both my doctors, and it's very hard for me to be mobile and away from the apartment. They don't answer calls, and they don't do prescriptions over the phone.

Now they're making even more cuts and it's getting worse.

So yeah...as soon as I saw the words, "Canada" and "universal health care", I realized you're s**t out of luck, buddy. Not here.

You want good specialists, move to the US and either get an insurance plan or pay lots of money if you're rich.

Socialized medicine in Canada, especially ontario has been broken since 2009, and now the ER system has completely collapsed.

If you need a hook up for a patient mill, that will send you to a specialist that will see you in 3 months for 3 minutes, then PM me, and I'll give you the number to a place that is always taking new patients. But don't expect any quality care.

We're not in Kansas anymore, Dorothy (Wizard of Oz reference)

Key points in bold.

I think you need to read more of what I wrote or read more carefully, because you don't seem to understand at all what I'm looking for and I'm fairly sure that what I wrote was clear (if I'm wrong about that, then I apologize for the misunderstanding). I am not looking for an autism specialist. I am looking for an ordinary family doctor who has some familiarity with autism.

If I needed to see a doctor who was an autism specialist (which, again, I do not), there actually are some specialists in my area that are apparently very good.

I don't want to have a long discussion/debate about the state of Canada's healthcare system ("systems" would be more appropriate, since healthcare is primarily governed by the provinces, not the federal government, and the nature/extent of problems/deficiencies can be largely regional). My opinion is that It's not perfect, but neither is it totally useless.

I assume you mean well and are trying to save me wasted effort and frustration or something like that, but you're not going to convince me that I'm SOL as far as finding a good family doctor is concerned. I'm sorry you've had terrible experiences, I think that sucks, and I appreciate you sharing your experiences; But I've seen excellent primary care doctors (and specialists) in the past, including one that was knowledgeable about autism and at least one other that probably would have become knowledgeable about it after I was diagnosed ....so I am sure they are out there, they are just hard to find.

And just so you know, I have had terrible experiences with doctors, too. That's part of why it's important to me to find a doctor who is familiar with autism, or for me to learn how people educate their doctors about autism in case I can't find a doctor like that but can find one who is open to learning a little bit about it.

That's even worse! GPs are idiots and know nothing about autism. You actually have to see a specialist. You have to do the research yourself, find what medication you need yourself, and then find a GP, and give them that information.

They will most likely refer you to a psychiatrist or psychologist - who may know the bare minimum about ASD

I am 28 years old. I have been in the healthcare system since I was a child. I have yet to meet a doctor, who knows anything about autism. Anything. My dad is a doctor, the only reason he knows about autism, is because he has an autistic son and had to learn it from scratch how to raise me. His friends and colleagues, don't know anyone who knows anything about autism.

You may have had a good primary care physician in the past. But you will not get that now. Ontario has a huge shortage of doctors, and if you're lucky enough to get an appointment, it will be 5 minutes, and you'll be repeating yourself every time, accomplishing nothing.

The most progress I've made, has been when I left the system behind, and went my own way.

In fact, I refuse to see my doctor out of protest to the medical system. If I had cancer, I would not take the chemo. I have never met more stupid people in hospitals and schools than anywhere else.

This is from years and years of life experience. Maybe the universe just hates me.

I just recently stumbled across a family doctor at a family clinic who understands autism. He told me that he "has a special place in his heart for those on the spectrum". He also has a social worker on staff that I can see on an ongoing basis indefinitely for free. Animalcrackers, if you live in the Hamilton, Ontario area, I can pm you the name of the doctor, he is still accepting new patients. He is a really cool guy.

I had typed out several pages in point form, organized under headings of all my diagnoses and how each diagnosis affected me, and the symptoms I had of each which I brought into the appointment along with a copy of my medical file from my previous family doctor. When I started talking about Asperger's it was very clear that I wasn't just talking to any ordinary Joe Blow doctor, this guy had a particular interest in the spectrum and was able to finish my thoughts and completely understand what I was talking about. I think this guy must have someone close to him in his life that is on the spectrum, which explains why he understands when almost no other doctor I have come across has. As for how I found this particular doctor, it was really more luck than anything else though I was specifically seeking out doctors who had a social worker on staff at their clinic.

That's awesome!



I don't, but thank you very much for the offer!



That's a really good idea for educating your doctor. Maybe I should do something like that.

I have been meaning to write down my personal and family medical history in point form because I never remember all the things when I'm asked about them -- maybe I could combine the two things into a sort of information sheet.

The best thing to do is type ASD in google and look for help online from actual doctors who have their own websites. Read their blogs and articles.

Also, look into natural remedies.

They work much better and in many cases faster than conventional medicine.
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I see it as going to a shoe maker to get your shoes fixed. Or you could just watch a youtube video, and do it yourself.

DIY medicine is all the rage right now.

You wan't a doctor who is autism friendly? His name is...the original poster of this thread.

In time you will learn that what this guy says on this topic is true. From my experience most will either completely ignore your ASD diagnosis or they have no understanding of it and can't even begin to empathize with it, sorry but trying is not good enough. We, and others living with ASD, are our only true resources on the subject.

I would certainly agree with that. I have seen more doctors than 99.999% of the people on this planet in a 10 year period and next to no one understands adults with high functioning autism. It was just sheer luck that I came across this doctor that I found.

Why do you need a doctor that understands ASD? If I have a medical issue all I care about is that the doctor can diagnose it and treat it, where does ASD come into that? Your physiology is the same after all.

I don't need any help with my autism, specifically, that I don't already have.

I just need a regular family doctor, and I am going to look for one despite your belief that I will not find one and that all doctors are idiots who know nothing.

Natural remedies and Google are not sufficient/realistic alternatives for me personally, although I do make use of them and have for ages because I prefer to avoid going to the doctor whenever possible.

I appreciate you sharing your experiences, advice, and opinions, but nothing you can say to me is going to make me agree with you that finding an autism-friendly doctor (or a good doctor of any kind) is hopeless or that I'm better off attempting to meet my health care needs entirely independently.

If you can't communicate your symptoms properly or answer the doctor's questions, or if you have unusual difficulties understanding and following their directions, and they don't understand this, it makes it hard for a doctor to diagnose and treat your problems effectively. If the doctor knows you have communication difficulties, they can be more patient and flexible with communication or try to accomodate you...basically they can work with you to get around the communication problems, and just be aware of the fact that miscommunication is more likely (which could help to correct it faster when misunderstandings happen).

Also, if your communication problems are obvious or if you simply sound and act really weird every time the doctor sees you, and the doctor knows nothing about autism (or any other neurodevelopmental or language/communication disorders), then they may assume you are psychotic or making up random nonsense or just being difficult or something, and dismiss everything you say before even examining you or try to treat you for a mental illness you don't actually have -- this could happen whether or not they are aware of your autism diagnosis, if they don't understand much/anything about what autism is and that it can affect communication and social behaviors (or that it can affect communication and social behaviors in more ways than just rendering you completely nonverbal, and apparently or actually completely ignoring the presence of most other people most of the time).

................................

While I know there are a lot of terrible doctors out there, I also know there are decent-to-good ones and among those decent-good doctors I think there are probably a fair number who don't know much/anything about autism but would be willing and able to learn about it, and a much smaller number who are already familiar with autism. I know it is difficult to find a doctor who knows anything about autism, or one who will want to educate themselves, but they are out there.



My perspective is not due to naivety/lack of experience. Again, I am well-aware that doctors who know about autism are in the minority. I have experienced treatment from doctors that should have been reported to the medical college, it was so blatantly abusive and unprofessional. I have seen incompetent doctors. I have had many, many experiences with many doctors starting in childhood (I was a children's hospital patient for many, many years), and those experiences run the gamut from horrific and traumatizing to unremarkable to excellent.

I'm not saying that the excellent experiences are the majority for me -- it is a minority of the doctors I've seen that I've had excellent experiences with. (And for all I know, positive experiences with doctors are the minority of doctor-related experiences for most people.) But after having had several positive experiences, and knowing what a tiny fraction of the medical system and physician population any one person is likely to see even when they see way more doctors than the average person, I firmly believe that it is possible for me to find a good family doctor who either knows about or is willing to learn about autism, and receive more good care. Guaranteed? Of course not, but certainly possible and, for me, worth trying.