Provider education on autism

I have a long-term goal of increasing autism education/awareness for providers (ie primary care providers, psychiatrists who do not specialize in autism).

What is your experience in how providers have handled your autism?

What do you wish your providers knew about your autism?

What things would help you in meeting with providers?

What do you think they should be educated about?

Would love any other input

Thank you!

I have a family physician, do not make a point of telling him I'm on the spectrum self diagnosed, He does not impress me suspect he was not top of his class in medical school. Had to change doctors after stroke as my original doctor older than me showed signs of dementia. Time to move on.

daniegirl6224 said:

What is your experience in how providers have handled your autism?

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My only experience with autism specific service providers was when I got my diagnosis. Very few Aussies will ever submit themselves to a shrink, the idea is culturally abhorrent to us.

I was very surprised and very pleased with the system in place for getting a diagnosis, it's a bit different to the rest of the country. One large diagnostic centre serves the whole state, and it's government subsidised.

I didn't need a referral from a GP, I just walked through the door and asked for a diagnosis. A couple of ladies interviewed me for about 15 minutes, then they both agreed that I was obviously on the spectrum and booked me in for a diagnosis. There was a 12 month waiting list, but it was worth the wait.

The diagnosis was performed by a panel of 3 specialists in a face to face environment and it took 3.5 hours. At the end of that I waited around for 45 minutes while they wrote up a full report and gave me a copy. The total cost of that for me was Au$500. Around US$300.

Because my diagnosis was done by a government approved service provider my diagnosis was immediately accepted by social security, if I had gone to private practitioners I would have been sent off for second and third opinions.

My only other experience is with general practitioners and that experience has not been good. Many others I have spoken to have similar bad experiences. I am currently lobbying and presenting legal arguments for why poorly trained and poorly educated general practitioners should not be allowed to prescribe psychotropic drugs such as antidepressants - too many of us has suffered too much harm from these drugs to allow this practice to continue.

One thing that has made a huge difference in my state is the creation of a government department to look in to all things autistic and they have been initiating a lot of changes in our state, from the education of children to legislation in industrial relations to recommendations for changes to building codes. A lot is changing here really quickly and at the moment it all seems to be very positive.

home

My personal experience with my GP was great. She listened to everything I said and took notes while asking me relevant questions. Everything she needed was right there on her computer.

I think one of the reasons was the NHS education resources for primarily care providers are top notch. I found a few, but now to access them, medical credentials are required, or they are on NHS private networks and inaccessible from the internet.

I added some to the archive.org wayback machine in case they disappear from the internet:

Wayback Machine

Wayback Machine

Wayback Machine

Autism Spectrum Disorders (ASD) and Aspergers (Adults) - RefHelp

Autism Spectrum Disorder (ASD) Atypical Autism | Asperger’s Syndrome | Scotland < This one is a bit buggy, click the little C inside the spiky star in the bottom left corner if you get a warning about cookies.

I can’t comment on how good the NHS psychiatry is since they stopped taking referrals due to lack of resources, so I had to get a private diagnosis and that was a specialist autism clinic.

The only thing that I would like them to understand better is just how vast the autism spectrum is. The spectrum is a circle, not a line.

daniegirl6224 said:

I have a long-term goal of increasing autism education/awareness for providers (ie primary care providers, psychiatrists who do not specialize in autism).

What is your experience in how providers have handled your autism?

What do you wish your providers knew about your autism?

What things would help you in meeting with providers?

What do you think they should be educated about?

Would love any other input

Thank you!

Click to expand...

I've mentioned this a number of times here, but I have worked at one of the largest children's hospitals in the US. From that perspective, we do see many children with an ASD, sometimes for normal childhood illnesses, sometimes for surgical procedures, sometimes treating their other medically-complex issues. I think most of our physicians and staff have a fair amount of experience with childhood ASD.

That said, I know that we have at least a handful of physicians and staff that have an ASD themselves. Sometimes it is quite obvious to me, sometimes we have spoken and identified each other as such, sometimes I suspect, but haven't broached the subject with them, I also think there are people walking around without any clue they have an ASD. I was 52 when I was diagnosed. I had worked next to people for 30+ years, and to my knowledge, only once did anyone bring up the topic of autism. That one person happened to be the mother of 5 boys, one of which has an ASD, and recognized it in me. She was the one who sent me along my journey. My colleagues, I had to eventually "out" myself to them because there where certain things that effected my working relationship with them that was directly related to core autistic traits. I felt it important that they put things into the proper perspective before judging on some "moral diagnosis". I have had a life of being misunderstood and being accused of this or that, so it was really important that they knew. My students know, as well, for the same reasons.

When I showed my diagnosis paperwork to my physician, he was a bit perplexed at first, because in his mind, I didn't overtly demonstrate autistic traits. Once we dove into a few medical issues I had, looked at the literature that was out there, he realized that autism can influence things like blood pressure, cholesterol levels, endocrine/hormonal function, inflammatory mediators, etc. With that information, we were able to try some different approaches to things and finally get a handle on some specific health issues.

Here is my take on this. I do not think that physicians, nurses, respiratory therapists, or any other health profession spends but a few minutes on the topic of autism, if that. Frankly, in my training, it was ZERO. I had to learn about autism on my own after being presented with children with ASDs. I don't believe my wife, an RN, received any information about this in her training. I cannot comment on what happens in medical schools, but given what I have witnessed, likely little to none in that regard, as well. Now, having said all that, keep in mind, most of these medical training programs are about streamlining the curriculum to fit the national board exams. If the board exams are not expecting anyone to know about ASDs, then zero attention will be given to it. We then learn about ASD from our work experience. So, as I suggested above, our experience is with childhood ASDs, not adult.

Adult ASDs, at least in my professional experience, are more the so-called "high-functioning"/Asperger's/ASD-1 variants. With good masking, most people who are not paying attention will not recognize a person with these variants. They can receive a "moral diagnosis", they can be "highly sensitive people", they can also be "insensitive, unempathetic jerks", "narcissists", "introverts", "aloof, unfriendly, and intimidating". People can come up with all sorts of reasons why they might not like us, but an ASD might never occur to them because we don't act like the severely affected children they may have encountered.

As I am quoting my brother-in-law (a chemical engineer), "I have heard of autism, but I don't know what it is." I think this pretty much sums up what the general population, and even medical professionals, know about ASDs. You won't know about the topic unless you do some research on it.

Neonatal RRT said:

he realized that autism can influence things like blood pressure, cholesterol levels, endocrine/hormonal function, inflammatory mediators, etc. With that information, we were able to try some different approaches to things and finally get a handle on some specific health issues.

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I would be interested in learning whether or not the autism diagnosis affects the treatment of the symptoms listed here. From my perspective these are all treated symptomatically. I take BP meds, thyroid, cholesterol meds. There's nothing I know about that treats the inflammation, at least that works for me. What are the "different approaches."?

@WhitewaterWoman As it relates to autism and inflammation:
1. Methylation pathways
2. Cortisol pathways
3. Homocysteine pathways
4. Antioxidant pathways
5. Insulin pathways

Treat the underlying mechanisms and you can impact the chronic inflammation, blood pressure, cholesterol, metabolic syndrome, etc.

daniegirl6224 said:

What is your experience in how providers have handled your autism?

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I had one really good experience. My mental health therapist was part of my primary care practice and they helped facilitate a meeting with my new doctor during a time when I was extremely touch averse. My new doctor was able to take time to speak with me with my therapist (prior to the medical appt.) and then showed great patience and understanding as I started under her care. It had been years since I had been to the doctor's because of anxiety, and this doctor helped ease me back into being regularly seen. The support and counsel of the therapist was helpful at that time too.

daniegirl6224 said:

What do you wish your providers knew about your autism?

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I wish they knew more about auditory processing disorders. I present myself articulately and intelligently and therefore it seems difficult for them to understand why it is so hard for me to take in what they are saying and keep up with the pace of an appointment. I wish doctors were not always so rushed and brief with their interactions. I need more time in each appointment to understand what is going on and form any relevant questions. I utilize lists going in to an appointment and write down everything they say, but I still seem to miss so much because it all happens so dang fast.

daniegirl6224 said:

What things would help you in meeting with providers?

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If the doctor cannot give more time for the appointment, perhaps the nurse could be present during the appointment and then remain after to discuss any questions, concerns, or clarifications.

I now have immediate access to my provider's "visit summary" notes and that has been very helpful. Anything that can be provided in writing (or accessed online) is very helpful to review after the appointment.

Perhaps, each practice could have an autism advocate who is an expert on autism (and hopefully autistic themselves), that could be present during certain appointments and help patients with autism and their provider understand each other better.

daniegirl6224 said:

What do you think they should be educated about?

Click to expand...

All things autism - I will focus on ASD-1, though. It appears that proper understanding of ASD-1 is still quite limited and there seems to be a need for continued education on the diversity of ASD symptoms and the silent struggles that many people with autism face. It would be helpful for doctors to understand more about the links between chronic stress and masking, sensory overload, and social overwhelm.

Neonatal RRT said:

@WhitewaterWoman As it relates to autism and inflammation:
1. Methylation pathways
2. Cortisol pathways
3. Homocysteine pathways
4. Antioxidant pathways
5. Insulin pathways

Treat the underlying mechanisms and you can impact the chronic inflammation, blood pressure, cholesterol, metabolic syndrome, etc.

Click to expand...

How does autism conscious treatment differ from conventional treatment in these cases?

vergil96 said:

How does autism conscious treatment differ from conventional treatment in these cases?

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Primarily because the typical algorithms used to treat common health issues do not take into account all the autism-related genetics and metabolic pathways that can also contribute or cause these things.

Poor methylation of B-vitamins, chronically elevated cortisol, adrenal insufficiency, low vagal tone, chronically elevated inflammatory mediators, oxidative stress, low serotonin, low dopamine, low oxytocin, altered posterior pituitary signaling, insufficient creatine metabolism, intestinal microbiome dysfunction, on an on, are common within ASDs. All of these can be drivers of all sorts of common health issues that are not normally recognized in the non-autistic population.

I know there are certain individuals that cannot wrap their minds around this concept that autism is a medical condition, but you cannot practice medicine and treat autistic patients the same as non-autistics. There is a physiology there that needs to be recognized in order to tailor your treatments appropriately to your patients.

Thank you everyone for all of your knowledge, insight, and resources! Your responses have been very helpful

Neonatal RRT said:

@WhitewaterWoman As it relates to autism and inflammation:
1. Methylation pathways
2. Cortisol pathways
3. Homocysteine pathways
4. Antioxidant pathways
5. Insulin pathways

Treat the underlying mechanisms and you can impact the chronic inflammation, blood pressure, cholesterol, metabolic syndrome, etc.

Click to expand...

But how are these treated?

Neonatal RRT said:

Primarily because the typical algorithms used to treat common health issues do not take into account all the autism-related genetics and metabolic pathways that can also contribute or cause these things.

Poor methylation of B-vitamins, chronically elevated cortisol, adrenal insufficiency, low vagal tone, chronically elevated inflammatory mediators, oxidative stress, low serotonin, low dopamine, low oxytocin, altered posterior pituitary signaling, insufficient creatine metabolism, intestinal microbiome dysfunction, on an on, are common within ASDs. All of these can be drivers of all sorts of common health issues that are not normally recognized in the non-autistic population.

I know there are certain individuals that cannot wrap their minds around this concept that autism is a medical condition, but you cannot practice medicine and treat autistic patients the same as non-autistics. There is a physiology there that needs to be recognized in order to tailor your treatments appropriately to your patients.

Click to expand...

I agree with you. But I don't see how to apply it to my health or to other autists. For example, I inject B12 because I saw no different with B12 oral. The injections do increase my energy and capacity to think. I take them every 2 weeks because the effects of the injection don't last a month. What else can I do to improve the B12 issues?

Chronically elevated cortisol. I also have this. What do I do beside meditation and antianxiolytics?

Most of the time when I read a scientific article about these issues, they relate to lab studies or clinical trials. I don't see recommendations that I could give to my doctor to help me (and presumably this would be true for other autists as well. I'm just using me as an example because it is a case I know well.) My doctor is very flexible with me asking for this or that, but I have to have a good reason for it.

Etc.

WhitewaterWoman said:

I agree with you. But I don't see how to apply it to my health or to other autists. For example, I inject B12 because I saw no different with B12 oral. The injections do increase my energy and capacity to think. I take them every 2 weeks because the effects of the injection don't last a month. What else can I do to improve the B12 issues?

Chronically elevated cortisol. I also have this. What do I do beside meditation and antianxiolytics?

Most of the time when I read a scientific article about these issues, they relate to lab studies or clinical trials. I don't see recommendations that I could give to my doctor to help me (and presumably this would be true for other autists as well. I'm just using me as an example because it is a case I know well.) My doctor is very flexible with me asking for this or that, but I have to have a good reason for it.

Etc.

Click to expand...

Many autistics are unable to methylate. If you take B-12 or folate, it must be methylated, the active form.

Cortisol is a stress hormone. Within the context of autism, a condition associated with heightened stress responses or dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis and the amygdala. It makes the adrenal glands "hyperactive". Some evidence suggests that the negative feedback loop responsible for down regulation of the adrenal glands may be impaired in autism.

Chronic inflammation (inflammatory mediators, leaky gut, etc), also associated with autism, can also stimulate cortisol production.

No clear fixes for this. You mentioned meditation, antianxiolytics, but also physical activity, and perhaps serotonin 2A agonists like psilocybin (works anecdotally, but needs more study) PSILAUT study pending. Omega-3 supplements, GABA, magnesium-B6, melatonin supplements have also been studied with varying success.

Chronic hypertension: Again, heightened stress responses, the HPA-axis, amygdala, create a release excess catecholamines (vasoconstriction of blood vessels and increase baseline heart rate), then throw in a low vagal tone, it creates activation of the sympathetic nervous system with little ability to down-regulate.

daniegirl6224 said:

I have a long-term goal of increasing autism education/awareness for providers (ie primary care providers, psychiatrists who do not specialize in autism).

What is your experience in how providers have handled your autism?

What do you wish your providers knew about your autism?

What things would help you in meeting with providers?

What do you think they should be educated about?

Would love any other input

Thank you!

Click to expand...

THEY NEED TO LEARN TO RECOGNIZE IT!!!! Over a span of 30 years, more than a dozen psychologists, psychiatrists, mental health therapists, and mental health counselors failed to recognize my autism, despite being given a list of problems that read like the diagnostic criteria for autism. It was finally noticed by a job search consultant when I was 60.

Tbh I have encountered the approach that everything healthcare is "just stress" and "you need to get nervous less" or "take antidepressants, it will help" waaaay too much.

I have celiac disease, it's genetic, runs in my family and not in the autistic members. Therefore I have GI and autoimmune issues. It has been handled just fine. Although some implications of an autoimmune disorder are not obvious at all, it can masquerade as something else. Celiac gave me chronic pain, acne, headaches, stomach aches, chronic fatigue, when I went gluten-free, it stopped. Conclusion: if you're even mildly allergic to something, don't eat it, don't use it on your skin, don't wear it, don't keep it in your home. Vitamin deficiencies were handled fine by doctors. Celiac causes poor absorption in the gut and vitamin deficiencies in turn.

Rodafina said:

All things autism - I will focus on ASD-1, though. It appears that proper understanding of ASD-1 is still quite limited and there seems to be a need for continued education on the diversity of ASD symptoms and the silent struggles that many people with autism face. It would be helpful for doctors to understand more about the links between chronic stress and masking, sensory overload, and social overwhelm.

Click to expand...

This!

vergil96 said:

Tbh I have encountered the approach that everything healthcare is "just stress" and "you need to get nervous less" or "take antidepressants, it will help" waaaay too much.

Click to expand...

There may, indeed, be this cognitive bias, because in many cases, this holds some truth. However, as I suggested above, the typical algorithms for treating many common conditions, especially as we age, lean in the direction of lifestyle and dietary habits, and do not include the possibility that at least some of it is autism-related. The result of a healthcare system and training that revolves around medications and reacting to things after they happen. Almost no training in nutrition, lifestyle, and preventative medicine. We have a "healthcare" system that knows almost nothing about what it takes to be healthy. The overwhelming majority of doctors, nurses, healthcare workers are some of the unhealthiest people around. Lots of stress, poor dietary habits, and when they are done with their shift at work, they are trashed, so they rarely exercise. If you need surgery, someone to fix a broken bone, stitch up your cuts, go to a doctor. If you want advice on being healthy, your doctor might not be the right person.

However, as autistics, we need to educate ourselves and be vocal advocates for our own health. We have, in some cases, other reasons, other metabolic pathways, that need to be recognized as possible causes or contributors to some common medical conditions. Sometimes, you do need to do your research, pull up those articles, print those off, and bring them to your doctor's appointments. Have that discussion.

Neonatal RRT said:

The result of a healthcare system and training that revolves around medications and reacting to things after they happen. Almost no training in nutrition, lifestyle, and preventative medicine. We have a "healthcare" system that knows almost nothing about what it takes to be healthy.

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This is certainly not a good direction. As someone said, "Medicine knows everything about disease and nothing about health".

I don't know what you mean specifically, I'm not saying it's what you said, but I have encountered a lot of emphasis on understanding stress from the perspective of... not addressing its causes, but "just be less nervous" kind of approach, offering perhaps relaxation techniques, CBT and "it's all just your cognitive bias, be more positive", antidepressants. Autistic people certainly face more stress and trauma, but it means we have to address the causes of the stress, not the stress itself alone. We need to acknowledge our sensory and cognitive differences and treat our nervous systems with kindness and care they deserve. In my experience "mood improvement" resulted in making things worse, because the real problems were being swept under the rug and the heap under the rug grew until it was too late.

Of course, if we're talking about other accompanying mental health conditions, the issue looks different and those require different measures. There are studies showing altered neurogenesis in autistic individuals and different connctivity between neurons as the cause. Our brains have a different structure, it results in a different perception - and it's fine and worth accommodating.

Neonatal RRT said:

Here is my take on this. I do not think that physicians, nurses, respiratory therapists, or any other health profession spends but a few minutes on the topic of autism, if that. Frankly, in my training, it was ZERO. I had to learn about autism on my own after being presented with children with ASDs. I don't believe my wife, an RN, received any information about this in her training. I cannot comment on what happens in medical schools, but given what I have witnessed, likely little to none in that regard, as well. Now, having said all that, keep in mind, most of these medical training programs are about streamlining the curriculum to fit the national board exams. If the board exams are not expecting anyone to know about ASDs, then zero attention will be given to it. We then learn about ASD from our work experience. So, as I suggested above, our experience is with childhood ASDs, not adult.

Adult ASDs, at least in my professional experience, are more the so-called "high-functioning"/Asperger's/ASD-1 variants. With good masking, most people who are not paying attention will not recognize a person with these variants. They can receive a "moral diagnosis", they can be "highly sensitive people", they can also be "insensitive, unempathetic jerks", "narcissists", "introverts", "aloof, unfriendly, and intimidating". People can come up with all sorts of reasons why they might not like us, but an ASD might never occur to them because we don't act like the severely affected children they may have encountered.

Click to expand...

Thank you. Well stated!

It's the sort of comment that makes me believe the professional medical community is severely lacking in an ability to diagnose autism in the case of older adults. That our ability to be forced into masking our autistic traits & behaviors becomes so acute even medical professionals with insufficient training cannot see us for who we are. Yet among our own neurological peers, we seem to fit right in.

Very discouraging at times. So I'm inclined to believe that there is so much more that needs to be done for autistic adults and not a system of care focused mostly on children alone.

Particularly in my state of Nevada though we have logistical problems when it comes to professional medical services across the board. This just isn't a place that draws enough such persons, regardless of their professional competency. Just to give birth here can be potentially risky, along with much of anyone seeking immediate emergency care, depending on where you are or your ability to find a clinic or hospital nearby.

As much as I enjoy the desert, I know well that this is one place not to require immediate medical services. Though apart from this most pressing concern, it continues to irk me how so much here in terms of autism is geared only for children and not adults.

https://thisisreno.com/2024/12/unr-report-nevadas-public-health-system-faces-serious-challenges/

Angular Chap said:

My personal experience with my GP was great. She listened to everything I said and took notes while asking me relevant questions. Everything she needed was right there on her computer.

I think one of the reasons was the NHS education resources for primarily care providers are top notch. I found a few, but now to access them, medical credentials are required, or they are on NHS private networks and inaccessible from the internet.

I added some to the archive.org wayback machine in case they disappear from the internet:

Wayback Machine

Wayback Machine

Wayback Machine

Autism Spectrum Disorders (ASD) and Aspergers (Adults) - RefHelp

Autism Spectrum Disorder (ASD) Atypical Autism | Asperger’s Syndrome | Scotland < This one is a bit buggy, click the little C inside the spiky star in the bottom left corner if you get a warning about cookies.

I can’t comment on how good the NHS psychiatry is since they stopped taking referrals due to lack of resources, so I had to get a private diagnosis and that was a specialist autism clinic.

The only thing that I would like them to understand better is just how vast the autism spectrum is. The spectrum is a circle, not a line.

Click to expand...

I relate to the second pic spent my career working with colour. what is most important is differences in colour than colour itself. My big breakthrough in controlling colour.