Kate, I'm so glad you didn't listen to me and went ahead and pursued testing and then all the services you got for Ocean! I just thought he was a quirky genius, like Einstein, who, it turns out was on the spectrum! I was so honored that you allowed me to come along to the visit with the neurologist! I remember we had to wait a long time and I was so glad I was there to help entertain Ocean, but also to hear the doctor talk about the test results. All through the years your decisions have turned out to be so helpful to him, and witnessing you navigate the complexity of the medical, legal, and educational systems has been inspiring! Remember the high- intensity upper East Side private school we looked at? I was so sure it would be wonderful, but in retrospect, it would have been so stressful, and he would
not have had the benefit of all the services you've gotten him in the public school system. I love you and I'm so proud of you and Ocean!
I don’t know that Einstein himself ever identified as autistic.
As far as schools, I toured at least a dozen. Don’t remember which one you’re referring to, but it may have been Parkside which is a fantastic school for the right students. If I have learned anything, it’s that there’s no one “best” setting, since each kid is so different. I think Ocean has had good support, but there’s no way to compare. We’re all just doing our best with what we’ve got. 😘
I believe there's a relatively high rate of suicide among young people with high-er (as opposed to high) functioning autism spectrum disorder.
Realistically, while students with ‘low-functioning’ ASD seem to be more recognizable thus treated in school systems, high-er functioning ASD students — who tend to not exhibit the more overt, debilitating symptoms of autism — are more likely to be left to fend for themselves, except if their parents can finance specialized education.
... As a boy with an undiagnosed autism spectrum disorder, my public-school Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her large, dark sunglasses when dealing with me.
Rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’. But not being mentally, let alone physically, abused within or by an educational system is definitely a moral right; I was simply unable to see this.
Perhaps schoolteachers should receive training in high-er functioning ASD, especially if the rate of autism diagnoses is increasing. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition.
Neurodiversity lessons, while not overly complicated or extensive, might help reduce the incidence of chronic bullying against such vulnerable students. It would explain to students how, among other aspects of the condition, people with high-er functioning ASD are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a ‘choice’.
It would also elucidate how “camouflaging” or “masking,” terms used to describe higher-functioning ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. And that this exacerbation is reflected in the disproportionately elevated rate of suicide among them.
Mental health issues can definitely be a symptom of a biased culture. Neurodiversity lessons would be a great idea. I've gifted the book Uniquely Human to many of Ocean's teachers. Who knows if they read it though. From what I've seen, teachers set the tone and students follow. So if teachers are unconcerned about stimming, for example, the other students won't be bothered.
I'm so sorry you were the victim of abuse by someone who was supposed to mentor and protect you. I'm so sorry she wasn't found out and stopped. Unfortunately it is still happening to students I know. Eradicating stigma and creating a kinder, more inclusive future - that's the purpose of my work.
For some other very young (albeit likely neurotypical) boys back then and there, there was her sole counterpart — a similarly abusive teacher but with the additional bizarre, scary attribute of her eyes rapidly shifting side to side.
Back then, there was a greater problem of males refusing to ask for help due to their fear of being perceived by peers, etcetera, as weak/non-masculine. It was/is endured, however silently, by males of/with whom we are aware/familiar or to whom so many of us are closely related.
The mindset maintains, albeit perhaps subconsciously: Men can take care of themselves, and boys are basically little men. It’s the mentality that might help explain why the author of Childhood Disrupted: How Your Biography Becomes Your Biology and How You Can Heal was only able to include one male among its six interviewed subjects, there presumably being such a small pool of ACE-traumatized males willing to formally tell his own story of traumatic childhood adversity.
Kate, this was very helpful and insightful. Thorough and convincing, as well as sensitive.
I have seen parents do both and the child not diagnosed is often more confused and alienated.
Seems you have found a tremendous amount of high quality services within the public school system? I am not sure exist across all neighborhoods but are worth advocating for. You’re are paving the way for others not just your son. Thank you Kate.
Thank you Emily. We're paving the way together! I'm so glad you're here.
You are right that this constellation of services doesn't exist everywhere. We did have to leave our Brooklyn neighborhood to access them, and there were times my son was on that iconic mini school bus for far too long, just like tens of thousands of other disabled NYC kids.
I'm a public school kid myself, and for many reasons we couldn't go the private route. We have a lot of privilege, for sure. AND, the program he's in was started by parents of autistic kids who were also professionals. Collaboration and radical care will make it happen globally. That's the vision.
Fantastic article. Really lays out the common fears most parents have. Your point about the quality of treatment being more important than any label is exactly why I’m so glad we ended up seeking diagnosis for our kid!
Thanks Marika, I'm so glad to have you here, and in the world advocating for your kid. Those fears are well-founded and I'm grateful to have had the courage to transcend them.
Understanding does change everything- for the positive.
For sure Cindy!
Kate, I'm so glad you didn't listen to me and went ahead and pursued testing and then all the services you got for Ocean! I just thought he was a quirky genius, like Einstein, who, it turns out was on the spectrum! I was so honored that you allowed me to come along to the visit with the neurologist! I remember we had to wait a long time and I was so glad I was there to help entertain Ocean, but also to hear the doctor talk about the test results. All through the years your decisions have turned out to be so helpful to him, and witnessing you navigate the complexity of the medical, legal, and educational systems has been inspiring! Remember the high- intensity upper East Side private school we looked at? I was so sure it would be wonderful, but in retrospect, it would have been so stressful, and he would
not have had the benefit of all the services you've gotten him in the public school system. I love you and I'm so proud of you and Ocean!
Love,
Mom
Haha. Maybe because you’re a bit quirky yourself!
I don’t know that Einstein himself ever identified as autistic.
As far as schools, I toured at least a dozen. Don’t remember which one you’re referring to, but it may have been Parkside which is a fantastic school for the right students. If I have learned anything, it’s that there’s no one “best” setting, since each kid is so different. I think Ocean has had good support, but there’s no way to compare. We’re all just doing our best with what we’ve got. 😘
I believe there's a relatively high rate of suicide among young people with high-er (as opposed to high) functioning autism spectrum disorder.
Realistically, while students with ‘low-functioning’ ASD seem to be more recognizable thus treated in school systems, high-er functioning ASD students — who tend to not exhibit the more overt, debilitating symptoms of autism — are more likely to be left to fend for themselves, except if their parents can finance specialized education.
... As a boy with an undiagnosed autism spectrum disorder, my public-school Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her large, dark sunglasses when dealing with me.
Rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’. But not being mentally, let alone physically, abused within or by an educational system is definitely a moral right; I was simply unable to see this.
Perhaps schoolteachers should receive training in high-er functioning ASD, especially if the rate of autism diagnoses is increasing. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition.
Neurodiversity lessons, while not overly complicated or extensive, might help reduce the incidence of chronic bullying against such vulnerable students. It would explain to students how, among other aspects of the condition, people with high-er functioning ASD are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a ‘choice’.
It would also elucidate how “camouflaging” or “masking,” terms used to describe higher-functioning ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. And that this exacerbation is reflected in the disproportionately elevated rate of suicide among them.
Frank that's so true.
Mental health issues can definitely be a symptom of a biased culture. Neurodiversity lessons would be a great idea. I've gifted the book Uniquely Human to many of Ocean's teachers. Who knows if they read it though. From what I've seen, teachers set the tone and students follow. So if teachers are unconcerned about stimming, for example, the other students won't be bothered.
I'm so sorry you were the victim of abuse by someone who was supposed to mentor and protect you. I'm so sorry she wasn't found out and stopped. Unfortunately it is still happening to students I know. Eradicating stigma and creating a kinder, more inclusive future - that's the purpose of my work.
For some other very young (albeit likely neurotypical) boys back then and there, there was her sole counterpart — a similarly abusive teacher but with the additional bizarre, scary attribute of her eyes rapidly shifting side to side.
Back then, there was a greater problem of males refusing to ask for help due to their fear of being perceived by peers, etcetera, as weak/non-masculine. It was/is endured, however silently, by males of/with whom we are aware/familiar or to whom so many of us are closely related.
The mindset maintains, albeit perhaps subconsciously: Men can take care of themselves, and boys are basically little men. It’s the mentality that might help explain why the author of Childhood Disrupted: How Your Biography Becomes Your Biology and How You Can Heal was only able to include one male among its six interviewed subjects, there presumably being such a small pool of ACE-traumatized males willing to formally tell his own story of traumatic childhood adversity.
Kate, this was very helpful and insightful. Thorough and convincing, as well as sensitive.
I have seen parents do both and the child not diagnosed is often more confused and alienated.
Seems you have found a tremendous amount of high quality services within the public school system? I am not sure exist across all neighborhoods but are worth advocating for. You’re are paving the way for others not just your son. Thank you Kate.
Thank you Emily. We're paving the way together! I'm so glad you're here.
You are right that this constellation of services doesn't exist everywhere. We did have to leave our Brooklyn neighborhood to access them, and there were times my son was on that iconic mini school bus for far too long, just like tens of thousands of other disabled NYC kids.
I'm a public school kid myself, and for many reasons we couldn't go the private route. We have a lot of privilege, for sure. AND, the program he's in was started by parents of autistic kids who were also professionals. Collaboration and radical care will make it happen globally. That's the vision.
Fantastic article. Really lays out the common fears most parents have. Your point about the quality of treatment being more important than any label is exactly why I’m so glad we ended up seeking diagnosis for our kid!
Thanks Marika, I'm so glad to have you here, and in the world advocating for your kid. Those fears are well-founded and I'm grateful to have had the courage to transcend them.