Autism-friendly/-aware family doctors

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Exactly!! !! !

We are being argumentative with you out of love for another of our own, because we know the system, and we don't want to see another aspie waste 12 years of his life. I'm not even sure what animal crackers even wants. Despite the bold lettering and long detail.

The doctor is obsolete, brother. I'm not saying to be negative. I have so many friends in the mental health system who are both patients and professionals.

Doctors like my dad are in despair over the system. Same with my ex and her family. Before her father died, he lay in the hallway, in a dirty diaper on a stretcher with no food, water, or anything to take the pain away. Because there were not enough beds FOR A 90 YEAR OLD MAN DYING OF CANCER!

The nurses are all overworked, going on no sleep, working double, sometimes triple shifts. Coffee and cigarettes.

The hospital system, the doctor system is a miserable system.

If you have a problem. Google it, or figure it out on your own. The tests the drs run are all BS anyway.

I am on my knees begging you, do not waste your time like I wasted many years of my life.

Most doctors not only knowledgeable, but they can give you the wrong advice, be harmful and get you into trouble.

This was bad enough before the even further cuts to healthcare.

Sorry. Let me try again?

What I want is to find a family doctor who understands enough about autism that I can communicate with them reasonably well -- well enough to avoid a lot of serious problems. That, or to find a family doctor who would be open to learning a bit about autism.

What I want from WP is:

To know if other people are in the same boat, where they need a doctor who understands autism (whether they can find one or not)

To hear from anyone who has a doctor who is familiar with autism, about how they found that person....tips/ideas about how to find a GP/family doctor who is familiar with autism.

To hear ideas about how to talk to/educate your doctor about autism (if you believe it's possible to educate a doctor about autism/possible that a doctor might listen to you).



I don't think it's a bad thing that in the mental health system there are people who are both patient and professional. And it doesn't mean the doctor is obsolete.....I think it's pretty common for doctors to be the patients of other doctors.



That's atrocious. Totally unacceptable.



In many ways, in many places, for many people, you're right, it is. But not all experiences people have in medical systems are f***ed up and terrible -- even if the majority of them are.



If I call all the doctors taking new patients, see a bunch of them, and it turns out they all suck then I'll just give up unless something changes (I move, new clinic opens, stuff like that). At that point I'd just go to a walk-in-clinic where I've received good medical care before and hope for the best.

Looking for an autism-friendly doctor won't waste years of my life -- I think it probably would waste days, or weeks of time. And I wouldn't consider it a waste, really, because I think the effort is worthwhile even if I can't find the sort of doctor I hope to find. There are a lot of things I've tried to do and failed at, but I don't consider the time I spent trying to be wasted time.



Why is being knowledgeable a bad thing?....I'm guessing it's a typo(?) but I can't figure out what it was supposed to be instead.

Yup, doctors can give bad/harmful advice. Poor/incorrect treatment, too. I agree with you that these things happen. I just don't think these are the only things that happen.



I appreciate that -- really I do. But I don't think that your experiences can necessarily be used to predict mine (mine can't be used to predict yours, either), and I think we have very different perspectives on a whole lot of things.

Maybe you're right and I'll never find a good family doctor again, but for me, personally, it is worthwhile to try.

If I'm still not making sense (I think maybe I've just repeated myself a lot), could you please try to explain what's unclear/confusing about what I've said?

I can't think of any other words beyond the ones I've already used, and that's partly because I don't know why/what you don't understand.

I think I understand what's being said on both sides of this conversation, and we all just have different approaches to dealing with an imperfect health care system, with doctors who aren't experts on autism.

Animalcrackers' approach is to screen as many doctors as it takes, in order to find one who acknowledges adult autism, and is capable of a better-than-average doctor/patient relationship. This approach takes patience and persistence, but will result in finding the best doctor possible, among the available choices.

Jkrane, Noumenon, Noca, and I are more jaded in our approach, accepting that doctors on average really don't understand or even want to acknowledge adult autism, and so we don't expect to get much help from them.

I don't think it's a matter of one approach being better than the other - you just have to choose the approach that works for you personally. I will be starting on a new health care plan in May, and getting a physical, and all I expect is for the doctor to do his job competently, perform the usual tests, and let me know if my test results indicate I need medical attention. That's really all he's trained to do, and that's all I expect of him.

As for my autism-related issues, I find the internet to be far more helpful, in learning what works for other people who deal with my specific health problems, and it generally comes down to home remedies, and lifestyle changes.

And in terms of communicating with my GP, I'm okay with the reality that he probably won't really understand the complexity of my issues, or my needs. I'm fine with him just taking my blood pressure, and screening me for the usual health problems, but if he decides that my vitals are okay, well then fair enough. I'll thank him, and go back home, and keep resorting to my trusty home remedies to deal with the myriad of disabling symptoms his exam failed to detect. Because I've learned over the years that complaining to doctors about my impossible-to-prove symptoms gets me nowhere, and generally just causes them to think I'm making it all up for attention.

Like I said, my approach is jaded, and based on a lifetime of bad experiences. I don't have the patience or even really the belief that I'm likely to find a truly caring doctor, even if I tried. But I acknowledge that they probably do exist, here and there, and for those who have the persistence to keep seeking until they find a good one, it's definitely possible!

You're right about my approach, but maybe not about my goal. I just want to find a doctor I'm capable of communicating with about the same things as any non-autistic person.

For example, if I go the doctor for a bad sore throat, I want them to understand I have a bad sore throat -- not to cut me off in the middle of trying to explain to them about my sore throat, start talking to me about heart attacks and stroke and eventually send me off with a prescription for an OTC painkiller after saying, "Your headache is nothing to worry about".

That specific example has never happened but that's how bizarre the interactions I have with doctors often are even for straightforward/common/easy-to-figure-out/visible problems like a sore throat. These bizarre interactions are the result of misunderstandings that start with me being unable to clearly explain things and at least some of the time they involve the doctor making incorrect assumptions/interpretations and/or impatient guesses. And when these kinds of misunderstandings happen and I'm sitting in the doctor's office totally lost and confused, it almost never occurs to me at the time to tell them that I'm completely lost and confused -- when it does occur to me, I am too slow at figuring out the words to do so. (I figure them out sometime between the middle of my trip home from the doctor's office and going to bed that night, usually..... The only script I've ever come up with is "I'm confused" but that doesn't really solve anything even if I can train myself to remember and say it because I'd still have to explain what I'm confused about and why.)



I agree.




I wish there were more truly caring doctors, and that they were all taught in medical school to respect the limits of their own knowledge (and medical knowledge in general)....and helped to develop more comfort with admitting they don't always know what's wrong or how to help.

I hear you - that's exactly the sort of thing I've always encountered as well. And I don't have the communication skills to argue with a doctor who thinks my headache is nothing to worry about. If the doctor jumps to conclusions, and isn't willing to listen to me (or believe me), I can't win that debate.

In fact, my ability to communicate is so bad that I have extreme difficulty making phone calls to set up appointments, so the thought of having to go through that again to find a better doctor is too overwhelming for me. That's why I've developed an alternative approach, of trying to find answers online, and home remedies that work for me (which is arguably no worse than the OTC painkiller the doctor wanted to prescribe, in the above example).

Yes, there are decent doctors out there, and with patience and persistence, it's possible to find them. I admire your courage in taking that approach, and hope that you end up with one who listens to you!

In my example I don't have a headache, and can't figure out how/why the doctor thinks I have one.

But I can relate -- I can't usually argue with doctors about things either, not unless they will read something I've managed to write in the days/weeks after the appointment.



I think I understand.

I try to treat things myself unless it reaches a point where it's obvious nothing I'm doing is going to make it better and the problem is getting worse ....then when I seek medical care and the problem is finally understood and treated (doesn't always happen the first try) the doctor is sometimes really alarmed and/or trying to figure out what's wrong with me that I didn't seek medical care sooner, and/or putting a lot of effort into making sure I understand the seriousness of my symptoms. I have never been able to explain myself.

I once got very lucky in that the instructions a doctor gave me for making a follow-up appointment the next day included telling me to go up to the front desk to speak to the people working there, the exact words to say to them, and to do this before I Ieft the clinic. (I didn't know how I was supposed to book a follow-up appointment, and I couldn't think how to ask so it was a huge relief when the doctor just started telling me all the things I needed to know.....otherwise it might have turned into a situation where I didn't follow up/did it wrong somehow, which has happened before, and doctors will sometimes just assume you don't care and/or are being willfully uncooperative -- not to mention the potential health consequences for whatever thing needed follow-up care/evaluation.)

Once I'm already a patient at a medical practice, though, it's not hard for me to make routine appointments for simple things that I have called about before and have scripts for (e.g. prescription refills) -- I would be fine if they didn't ask what your appointment is for.

I haven't yet figured out how I am going to make the phone calls to doctors accepting new patients -- the specific things to say and ask. I've never had to do it before. I have a couple of bits, like from Edenthiel's suggestion, and what I could find on internet sites like autismandhealth.org but those things don't make a full script.



Thank you!

I think that having had positive experiences in the past makes it easier for me -- so I need much less courage than I would if all my medical experiences had been either completely terrible or not-terrible-but-not-helpful.