About a month ago, I had the privilege of speaking to a group of medical students, most of them on track to become the doctors of tomorrow. I was asked to make a speech to introduce the subject and lead into the panel discussion of autism and medicine. Below is the speech, a link to the handout, and my answers to the questions the panel members were given. I'll also include a summary of what other panel members said.
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Good evening, and thank you for coming.
Before we begin, a note. We, the autistic people before you, represent a small portion of the autism spectrum. We're the ones who are verbal enough and organized enough to sit before you in a strange place, prepared to talk about ourselves in coherent detail. Not everyone you run into in your careers will be able to do this.
In fact, depending on how much stress we're under, WE OURSELVES may not always be able to do this. So the first thing I want you to know is that there are many forms of communication, and what we'll do here is only the most mainstream form: verbal speech, supplemented by body language.
This form of communication is what most of society runs on, and our proficiency in it is why we were chosen to be here. There are other kinds of valid communication, including behavior, sign language, texting, the Picture Exchange System, and text-to-speech apps. I would strongly encourage you to acquire a passing familiarity with these forms of communication, at least enough to recognize them so you know what to Google. (smile) Quite frankly, I expect these forms of communication to become more mainstream as our understanding of autism and nonspeaking humans advances.
So, what is autism? I've read a lot of books on the subject, and most of them start out with giving the DSM's definition. That's the American Psychological Association's diagnostic manual. And y'know, I could do that, but quite frankly, when I got my diagnosis about a decade ago, those criteria were useless. So I'm going to skip them. I have a bachelor's degree in psychology, and I'm going to tell you that diagnostic criteria for brain differences and mental disorders are far more theory than practicality.
You can rely on the diagnostic criteria for physical diseases like hives or measles because they're well understood. You can't, or at least shouldn't rely on the criteria for neurological differences and disorders, because quite frankly the APA is grasping at straws. They're trying their best, but apparently the human mind and the human brain are one of the most complicated subjects we as a species have ever tried to study.
Our current best understanding of autism relies on brain scans. When put under an fMRI, there are functional differences between an autistic brain and a normally developing one. Some parts of an autistic brain may be over- or under-developed by comparison to the "typical human brain." The connections between those parts may be stronger or weaker than average. You can get a wide variety of traits as a result of these differences in our mental machinery. The most common ones are socially-oriented: things like difficulty reading body language, difficulty reading facial expressions, and difficulty reading tones of voice.
The difficulty goes both ways: sometimes you find flat or singsong tones of voice in autistic people, or a very flat facial expression that doesn't convey much emotion, or very rigid and uncommunicative posture. You can also get things like gastro-intestinal disorders, diet sensitivities, sleep disorders, anxiety disorders, sensory sensitivities, executive function difficulties, and depression.
There are tradeoffs, though. An autistic person who loves their hobby is one of the most devoted and knowledgeable people you could hope to talk to about that hobby. As a spouse or a friend, an autistic person tends to be extremely loyal. We tend to have strong senses of justice. We also tend towards literal-mindedness, directness and honesty, rather than playing mind games and carefully selecting socially appropriate white lies. Physical appearances, things like what brands you wear, how perfect your makeup is, and how coordinated your clothes are... these things mean less to us than WHO you are, and what things you like.
Finally, autistic people bring fundamentally different points of view to any discussion. We are, in essence, different. That can provoke misunderstandings and slow things down, but it can also be helpful.
For example, when my spouse and I finally gathered enough money to be able to house-hunt, we were told to pick some important things we wanted in a house, tell them to the realtor, and then look around until we found a house we loved. My spouse may have been happy to do that, but I preferred to consider, in exhaustive detail, every aspect of the house I wanted to live in.
Things like 3 prong electrical outlets, the presence of a bathtub, number of bathrooms, number of shared walls, the tax rate, how the tap water tasted, the age of the roof, the amount of nature around the house, and the average time to Meijer, my parents' retirement home, and his workplace. All of these things were excruciatingly given priorities and point values and put into a spreadsheet, which we filled out for every home we looked at. Each home received a score at the end, which we used to help determine whether we wanted to put an offer on the home or not.
This was far more work and annoyance than most people would bother with, but I considered it worth the time so that we could find a home we would be happy in for decades. Was all this work atypical? Definitely. Was it worthwhile? Definitely, at least in my opinion. My autism, weirdness and all, helped me find a place I genuinely enjoy living in, and my family is better off because of it.
Which brings me to my last point. In recent years, autistic people have developed communities and schools of thought about ourselves, our difficulties, and our successes. One of the major philosophies to come out of this coordination is neurodiversity.
Essentially, neurodiversity is the idea that the human race is better with neurological diversity. That autism is not a disease to be cured, but a difference that should be supported and respected. That isn't to say that autistic people don't need help, or that being autistic doesn't come with hardships. It's merely to say that without us, you are all made less. The human race needs people with different points of view, because it takes new and weird ideas to come up with the new and weird inventions that keep humanity moving forward.
Temple Grandin redesigned cattle facilities and slaughterhouses to be more efficient and humane. John Elder Robison created astonishing new sounds and flaming guitars for the band KISS. Bill Gates and Steve Jobs transformed the world as we know it with personal computers and iPhones.
Each autistic person is different. Personally, I can't design a slaughterhouse or an iPhone, but I can stand here before you, the medical professionals of tomorrow, and attempt to bridge our worlds. I firmly believe the world is better with all of us: neurotypical and neurodiverse together.
Thank you.
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Link to the handout
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1. What are you doing now or have you done recently that is a success for you - either because if or in spite of your ASD?
I went to Reston, VA, near the capitol in DC to help direct the Autism Research Program's use of US tax dollars. They contract consumers (ie: people affected by the issue at hand) as well as scientific reviewers of various types. Each application is reviewed through a set of processes, and eventually a final score is assigned.
From those scores, the most scientifically rigorous and most useful-to-the-community studies are chosen to be funded. It was an exhausting opportunity, but a worthwhile one.
Most other panel members spoke about their jobs, or personal successes.
2. Tell us about your support system. If you want to, you can include your age of diagnosis.
My support system is complicated.
I try to eat dairy-free, because I've noted dairy products tend to send my mood into a downward spiral. I don't know why this is, but it's a clear enough effect that I noticed. I also have my supplements, which at this point is up to 8 pills in the morning, and 4 at night. These include multivitamins as well as specific minerals and vitamins I tend to be deficient in.
In addition to these, I try to exercise 2-3 days a week. I see a therapist once every two weeks, where she administers a form of neurofeedback called LENS as well as more traditional talk therapy and managing my supplements.
Other panel members spoke extensively about their families, mostly, some also about their friends. They mentioned relying on these people to "get them," and advocate for them when they can't do so for themselves.
3. What would you like people to know about autism? What do you think are some common misconceptions?
Mostly, that we grow up. The general perception of autism is that of a white male child of perhaps 6 years of age, obnoxiously trapped behind a warped pane of glass. In fact, the average age of an autistic person is 19, and many of us are people of color, born female, and gender minorities.
Those of us that can blend into the general population often choose to do so, because of the stigma and infantilization of autistic people. High support needs are equated with being a child or being stupid, and they shouldn't be. But that can drive those of us who are verbal to feel isolated, and unwilling to identify publicly as autistic.
Other common misperceptions included the specific symptoms and presentation of autism. Women in particular tend to not have the same kinds of symptoms as men, so sometimes an autistic person, or even a small child, is dismissed out of hand for not being like the "classical autism" which was described mainly around male children.
4. How do you respond in situations if you're scared or worried? How might you respond in an ER or in a traffic accident?
This is rare for me after three decades of life, but if I have no script or sense for what I should be doing, I tend to freeze. When sufficiently stressed or when my brain has become too "worded out", I can become nonverbal or very low-verbal.
Other panel members described being fully verbal but completely incapable of handling any decision-making. One even said she would need to be talked down, preferably with subjects like her favorite TV show, before she'd be able to engage with an emergency situation.
Another spoke of having a completely abnormal response to a traffic accident, where the panic and stress reaction that neurotypical humans experience quite literally didn't kick in. While the driver of her car was still locked into gripping the steering wheel, she got out of the car, inspected the damage, and found it was a very minor accident.
5. If you are a person who experiences sensory overload, would you prefer a quiet room in healthcare? How is the noise level/stimulation in current healthcare areas now?
I am definitely sound-sensitive. I'm not sure there is anything that counts as a quiet room in healthcare. I've been in hospitals, they make me fervently hope I never have to go back. There's always people moving and talking in the hallways, the sounds of machines and medical equipment inside the rooms, the fan or climate control going...
These were nice hospitals, too. Pleasant staff, lots of windows, art on the walls, all of that. I can't imagine trying to heal and recover in such a place. I'm no longer surprised when I go to visit someone in the hospital and they look terrible. Nobody looks good in a hospital. They're just not good places to be, to me.
There was no disagreement on this subject. Not one of the four of us found hospitals a relaxing, pleasant environment.
6. What can a neurotypical physician do to help communicate with a person with autism?
I mentioned this above, but it merits the repetition: learn about and be open to "nonstandard" forms of communication. The Picture Exchange Communication System is one of these. Sign language, text-to-speech apps, and texting itself are others, and there are more.
Other panel members noted that it's best to presume competence (ie: treat the autistic person like they're a person, and assume they know what they're talking about even if they can't express it perfectly). They also appreciated a willingness to listen, and patience when a person has difficulty giving a succinct answer.
7. What has a physician done for you that was helpful? Unhelpful?
I've found self-directed care to be the most useful. Giving me the information I need to make my own decisions, rather than simply writing a prescription and making the judgement call themselves, was empowering. Believing me when I describe symptoms that don't fit neatly into a medical textbook also features high on the list. I've had primary care practitioners that either didn't do this or didn't care because they had such a high caseload or just... didn't care overall.
---------------------
Good evening, and thank you for coming.
Before we begin, a note. We, the autistic people before you, represent a small portion of the autism spectrum. We're the ones who are verbal enough and organized enough to sit before you in a strange place, prepared to talk about ourselves in coherent detail. Not everyone you run into in your careers will be able to do this.
In fact, depending on how much stress we're under, WE OURSELVES may not always be able to do this. So the first thing I want you to know is that there are many forms of communication, and what we'll do here is only the most mainstream form: verbal speech, supplemented by body language.
This form of communication is what most of society runs on, and our proficiency in it is why we were chosen to be here. There are other kinds of valid communication, including behavior, sign language, texting, the Picture Exchange System, and text-to-speech apps. I would strongly encourage you to acquire a passing familiarity with these forms of communication, at least enough to recognize them so you know what to Google. (smile) Quite frankly, I expect these forms of communication to become more mainstream as our understanding of autism and nonspeaking humans advances.
So, what is autism? I've read a lot of books on the subject, and most of them start out with giving the DSM's definition. That's the American Psychological Association's diagnostic manual. And y'know, I could do that, but quite frankly, when I got my diagnosis about a decade ago, those criteria were useless. So I'm going to skip them. I have a bachelor's degree in psychology, and I'm going to tell you that diagnostic criteria for brain differences and mental disorders are far more theory than practicality.
You can rely on the diagnostic criteria for physical diseases like hives or measles because they're well understood. You can't, or at least shouldn't rely on the criteria for neurological differences and disorders, because quite frankly the APA is grasping at straws. They're trying their best, but apparently the human mind and the human brain are one of the most complicated subjects we as a species have ever tried to study.
Our current best understanding of autism relies on brain scans. When put under an fMRI, there are functional differences between an autistic brain and a normally developing one. Some parts of an autistic brain may be over- or under-developed by comparison to the "typical human brain." The connections between those parts may be stronger or weaker than average. You can get a wide variety of traits as a result of these differences in our mental machinery. The most common ones are socially-oriented: things like difficulty reading body language, difficulty reading facial expressions, and difficulty reading tones of voice.
The difficulty goes both ways: sometimes you find flat or singsong tones of voice in autistic people, or a very flat facial expression that doesn't convey much emotion, or very rigid and uncommunicative posture. You can also get things like gastro-intestinal disorders, diet sensitivities, sleep disorders, anxiety disorders, sensory sensitivities, executive function difficulties, and depression.
There are tradeoffs, though. An autistic person who loves their hobby is one of the most devoted and knowledgeable people you could hope to talk to about that hobby. As a spouse or a friend, an autistic person tends to be extremely loyal. We tend to have strong senses of justice. We also tend towards literal-mindedness, directness and honesty, rather than playing mind games and carefully selecting socially appropriate white lies. Physical appearances, things like what brands you wear, how perfect your makeup is, and how coordinated your clothes are... these things mean less to us than WHO you are, and what things you like.
Finally, autistic people bring fundamentally different points of view to any discussion. We are, in essence, different. That can provoke misunderstandings and slow things down, but it can also be helpful.
For example, when my spouse and I finally gathered enough money to be able to house-hunt, we were told to pick some important things we wanted in a house, tell them to the realtor, and then look around until we found a house we loved. My spouse may have been happy to do that, but I preferred to consider, in exhaustive detail, every aspect of the house I wanted to live in.
Things like 3 prong electrical outlets, the presence of a bathtub, number of bathrooms, number of shared walls, the tax rate, how the tap water tasted, the age of the roof, the amount of nature around the house, and the average time to Meijer, my parents' retirement home, and his workplace. All of these things were excruciatingly given priorities and point values and put into a spreadsheet, which we filled out for every home we looked at. Each home received a score at the end, which we used to help determine whether we wanted to put an offer on the home or not.
This was far more work and annoyance than most people would bother with, but I considered it worth the time so that we could find a home we would be happy in for decades. Was all this work atypical? Definitely. Was it worthwhile? Definitely, at least in my opinion. My autism, weirdness and all, helped me find a place I genuinely enjoy living in, and my family is better off because of it.
Which brings me to my last point. In recent years, autistic people have developed communities and schools of thought about ourselves, our difficulties, and our successes. One of the major philosophies to come out of this coordination is neurodiversity.
Essentially, neurodiversity is the idea that the human race is better with neurological diversity. That autism is not a disease to be cured, but a difference that should be supported and respected. That isn't to say that autistic people don't need help, or that being autistic doesn't come with hardships. It's merely to say that without us, you are all made less. The human race needs people with different points of view, because it takes new and weird ideas to come up with the new and weird inventions that keep humanity moving forward.
Temple Grandin redesigned cattle facilities and slaughterhouses to be more efficient and humane. John Elder Robison created astonishing new sounds and flaming guitars for the band KISS. Bill Gates and Steve Jobs transformed the world as we know it with personal computers and iPhones.
Each autistic person is different. Personally, I can't design a slaughterhouse or an iPhone, but I can stand here before you, the medical professionals of tomorrow, and attempt to bridge our worlds. I firmly believe the world is better with all of us: neurotypical and neurodiverse together.
Thank you.
------------------------
Link to the handout
------------------------
Panel Questions
1. What are you doing now or have you done recently that is a success for you - either because if or in spite of your ASD?
I went to Reston, VA, near the capitol in DC to help direct the Autism Research Program's use of US tax dollars. They contract consumers (ie: people affected by the issue at hand) as well as scientific reviewers of various types. Each application is reviewed through a set of processes, and eventually a final score is assigned.
From those scores, the most scientifically rigorous and most useful-to-the-community studies are chosen to be funded. It was an exhausting opportunity, but a worthwhile one.
Most other panel members spoke about their jobs, or personal successes.
2. Tell us about your support system. If you want to, you can include your age of diagnosis.
My support system is complicated.
I try to eat dairy-free, because I've noted dairy products tend to send my mood into a downward spiral. I don't know why this is, but it's a clear enough effect that I noticed. I also have my supplements, which at this point is up to 8 pills in the morning, and 4 at night. These include multivitamins as well as specific minerals and vitamins I tend to be deficient in.
In addition to these, I try to exercise 2-3 days a week. I see a therapist once every two weeks, where she administers a form of neurofeedback called LENS as well as more traditional talk therapy and managing my supplements.
Other panel members spoke extensively about their families, mostly, some also about their friends. They mentioned relying on these people to "get them," and advocate for them when they can't do so for themselves.
3. What would you like people to know about autism? What do you think are some common misconceptions?
Mostly, that we grow up. The general perception of autism is that of a white male child of perhaps 6 years of age, obnoxiously trapped behind a warped pane of glass. In fact, the average age of an autistic person is 19, and many of us are people of color, born female, and gender minorities.
Those of us that can blend into the general population often choose to do so, because of the stigma and infantilization of autistic people. High support needs are equated with being a child or being stupid, and they shouldn't be. But that can drive those of us who are verbal to feel isolated, and unwilling to identify publicly as autistic.
Other common misperceptions included the specific symptoms and presentation of autism. Women in particular tend to not have the same kinds of symptoms as men, so sometimes an autistic person, or even a small child, is dismissed out of hand for not being like the "classical autism" which was described mainly around male children.
4. How do you respond in situations if you're scared or worried? How might you respond in an ER or in a traffic accident?
This is rare for me after three decades of life, but if I have no script or sense for what I should be doing, I tend to freeze. When sufficiently stressed or when my brain has become too "worded out", I can become nonverbal or very low-verbal.
Other panel members described being fully verbal but completely incapable of handling any decision-making. One even said she would need to be talked down, preferably with subjects like her favorite TV show, before she'd be able to engage with an emergency situation.
Another spoke of having a completely abnormal response to a traffic accident, where the panic and stress reaction that neurotypical humans experience quite literally didn't kick in. While the driver of her car was still locked into gripping the steering wheel, she got out of the car, inspected the damage, and found it was a very minor accident.
5. If you are a person who experiences sensory overload, would you prefer a quiet room in healthcare? How is the noise level/stimulation in current healthcare areas now?
I am definitely sound-sensitive. I'm not sure there is anything that counts as a quiet room in healthcare. I've been in hospitals, they make me fervently hope I never have to go back. There's always people moving and talking in the hallways, the sounds of machines and medical equipment inside the rooms, the fan or climate control going...
These were nice hospitals, too. Pleasant staff, lots of windows, art on the walls, all of that. I can't imagine trying to heal and recover in such a place. I'm no longer surprised when I go to visit someone in the hospital and they look terrible. Nobody looks good in a hospital. They're just not good places to be, to me.
There was no disagreement on this subject. Not one of the four of us found hospitals a relaxing, pleasant environment.
6. What can a neurotypical physician do to help communicate with a person with autism?
I mentioned this above, but it merits the repetition: learn about and be open to "nonstandard" forms of communication. The Picture Exchange Communication System is one of these. Sign language, text-to-speech apps, and texting itself are others, and there are more.
Other panel members noted that it's best to presume competence (ie: treat the autistic person like they're a person, and assume they know what they're talking about even if they can't express it perfectly). They also appreciated a willingness to listen, and patience when a person has difficulty giving a succinct answer.
7. What has a physician done for you that was helpful? Unhelpful?
I've found self-directed care to be the most useful. Giving me the information I need to make my own decisions, rather than simply writing a prescription and making the judgement call themselves, was empowering. Believing me when I describe symptoms that don't fit neatly into a medical textbook also features high on the list. I've had primary care practitioners that either didn't do this or didn't care because they had such a high caseload or just... didn't care overall.
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