"Rather than treating autism as something to be "cured" or prevented, we should focus on creating a more inclusive society where neurodivergent individuals can thrive." THIS!!!
Excellent article on Autism Spectrum Disorder. Thank you for disabusing the notion that there is an “epidemic” of ASD and reframing such a notion as an increase in our abilities to recognize new symptoms and the assessment of children in all demographic groups. I especially appreciate that you addressed the misinformation that has come from the current Secretary of Health and Human Services, RFK,Jr re: the cause of Autism. I applaud your suggestion that ASD does not need to be “cured” and that the causes are complex, beginning in the first trimester of pregnancy. Keep up the great science writing!!
Yes to all of this! Another thing to note (or maybe write a piece on?) is the trends within psychiatry that fluctuate over time. We're in the midst of an ASD boom after just coming out of an ADHD boom. In the 90s, there was a huge influx of bipolar diagnoses. Diagnostic criteria change, awareness and stigmatization change, and there's seemingly a confirmation bias within psychiatry that leads to an influx in diagnoses of a specific disorder that has nothing to do with environmental factors (and definitely not vaccines).
I really cannot think of a time when I was more offended by such clearly out of touch comments as Kennedy's list of "nevers," describing people with Autism Spectrum Disorders: "They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go on a date." Apparently, for as much as Sec. Kennedy professes to be an advocate and defender of ASD children, he would seem to have never met, interacted with, or actually taken the time to sit down and speak with ASD children or adolescents.
In the past several months, I have written about beginning a fellowship in Child and Adolescent Psychiatry at a large military medical center, and co-facilitating services and a group for ASD young adolescents with a Nurse Practitioner, significantly more skilled & experienced than me. Obviously, I asked a lot of questions going into the experience, and she knowingly suggested that I let these incredible kids teach me! She kept referring to the fact that they were "special" and had their own "super powers," and when I begged her to explain, she always said, "You'll find out soon enough." She didn't like the word "neurodivergent," and I learned to dislike it as well. We settled on the analogy of "left-handed," meaning "in the minority, but perfectly acceptable." I would let them sit in my office chair while I sat on the couch, and we would play "Go Fish" the card game & talked; we talked about loneliness, & having no friends, sometimes being picked on. And we used my whiteboard to plot "strategy," that sometimes worked (and we high-5ed), or I grabbed tissues and comforted when it failed, and we started over. In the group (5 or 6 together), we watched short films & talked, or we did art with the art therapist, or we listened to music & sang. It was pretty awesome.
When I had to leave, I took the issue to the treatment team. I decided on "transitional gifts" (e.g. one girl loved Eric Clapton and I play guitar & had been sent a few guitar picks by him, so I put one on a chain for her; one boy loved battle ships so I found a card deck with battle ships). On the last day, they laughed & I laughed; they cried & I cried; they said they would continue the group & I believed them. I have never forgotten them.
So, Mr. Kennedy, if you ever read this, THIS is how you actually learn about kids with ASD and their families: by sitting with them and actually listening & interacting with them. Not cataloging them, or dragging in a Greier or two to "examine" data bout them, or an outcast Dr. or two to read some medical file to receive cheap accolades for dogging the people who actually struggled to try and save lives. You would be a better, fairer human being for having done so, in my humble opinion.
Such a great and well-needed article! Thanks loads for your efforts in putting this together.
I loved this sentence: Rather than treating autism as something to be "cured" or prevented, we should focus on creating a more inclusive society where neurodivergent individuals can thrive.
I think you could even leave out the word "neurodivergent" and focus on creating a more inclusive society where (all) individuals can thrive.
Which fits with this fantastic question: Are we building systems that recognize, respect, and support different ways of thinking and being in the world?
Any politician who is genuinely representing their voters should be able to answer "yes" to this and demonstrate the tangible ways in which it is happening.
"Rather than treating autism as something to be "cured" or prevented, we should focus on creating a more inclusive society where neurodivergent individuals can thrive." THIS!!!
Excellent article on Autism Spectrum Disorder. Thank you for disabusing the notion that there is an “epidemic” of ASD and reframing such a notion as an increase in our abilities to recognize new symptoms and the assessment of children in all demographic groups. I especially appreciate that you addressed the misinformation that has come from the current Secretary of Health and Human Services, RFK,Jr re: the cause of Autism. I applaud your suggestion that ASD does not need to be “cured” and that the causes are complex, beginning in the first trimester of pregnancy. Keep up the great science writing!!
Yes to all of this! Another thing to note (or maybe write a piece on?) is the trends within psychiatry that fluctuate over time. We're in the midst of an ASD boom after just coming out of an ADHD boom. In the 90s, there was a huge influx of bipolar diagnoses. Diagnostic criteria change, awareness and stigmatization change, and there's seemingly a confirmation bias within psychiatry that leads to an influx in diagnoses of a specific disorder that has nothing to do with environmental factors (and definitely not vaccines).
I really cannot think of a time when I was more offended by such clearly out of touch comments as Kennedy's list of "nevers," describing people with Autism Spectrum Disorders: "They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go on a date." Apparently, for as much as Sec. Kennedy professes to be an advocate and defender of ASD children, he would seem to have never met, interacted with, or actually taken the time to sit down and speak with ASD children or adolescents.
In the past several months, I have written about beginning a fellowship in Child and Adolescent Psychiatry at a large military medical center, and co-facilitating services and a group for ASD young adolescents with a Nurse Practitioner, significantly more skilled & experienced than me. Obviously, I asked a lot of questions going into the experience, and she knowingly suggested that I let these incredible kids teach me! She kept referring to the fact that they were "special" and had their own "super powers," and when I begged her to explain, she always said, "You'll find out soon enough." She didn't like the word "neurodivergent," and I learned to dislike it as well. We settled on the analogy of "left-handed," meaning "in the minority, but perfectly acceptable." I would let them sit in my office chair while I sat on the couch, and we would play "Go Fish" the card game & talked; we talked about loneliness, & having no friends, sometimes being picked on. And we used my whiteboard to plot "strategy," that sometimes worked (and we high-5ed), or I grabbed tissues and comforted when it failed, and we started over. In the group (5 or 6 together), we watched short films & talked, or we did art with the art therapist, or we listened to music & sang. It was pretty awesome.
When I had to leave, I took the issue to the treatment team. I decided on "transitional gifts" (e.g. one girl loved Eric Clapton and I play guitar & had been sent a few guitar picks by him, so I put one on a chain for her; one boy loved battle ships so I found a card deck with battle ships). On the last day, they laughed & I laughed; they cried & I cried; they said they would continue the group & I believed them. I have never forgotten them.
So, Mr. Kennedy, if you ever read this, THIS is how you actually learn about kids with ASD and their families: by sitting with them and actually listening & interacting with them. Not cataloging them, or dragging in a Greier or two to "examine" data bout them, or an outcast Dr. or two to read some medical file to receive cheap accolades for dogging the people who actually struggled to try and save lives. You would be a better, fairer human being for having done so, in my humble opinion.
Such a great and well-needed article! Thanks loads for your efforts in putting this together.
I loved this sentence: Rather than treating autism as something to be "cured" or prevented, we should focus on creating a more inclusive society where neurodivergent individuals can thrive.
I think you could even leave out the word "neurodivergent" and focus on creating a more inclusive society where (all) individuals can thrive.
Which fits with this fantastic question: Are we building systems that recognize, respect, and support different ways of thinking and being in the world?
Any politician who is genuinely representing their voters should be able to answer "yes" to this and demonstrate the tangible ways in which it is happening.