Thank you so much for writing this, Colin. This is beautiful and brought me to tears.
I’m 54 years old, and suspect that I’m on the spectrum, but finding testing & diagnosis as an adult is absolutely impossible. I’m already well into life, so I don’t expect a diagnosis to really change anything - I know myself and how to deal with the way my brain works. A diagnosis would be validating, though. It would help me understand myself better, and allow me to put a “label” to what I already know in my heart.
You know how, sometimes, you fall for a person’s art, and then how crushing it is when you learn that the way they live their life is a deep betrayal of the ethos their art represents (cough orsonscottcard cough). I am feeling the opposite of that feeling. Thank you, Colin, and thank you to the amazing autistic humans who enrich my life.
I am the parent of an autistic adult. The paucity of funding for programs once they age out of the school system is criminal.
We have been lucky to get our son into an excellent group home, where he is not only cared for but encouraged to be as independent as possible. He works, travels independently and writes poetry. I know that with you and his mother in his corner your son will be a success. He looks like an exceptional young man.
Thank you for this, Colin! Your talking about and advocacy for Hank has been a comfort for me as we navigate finding acceptance for our autistic 6 year old (especially the verse in “Rise To Me.” Genuinely sobbed the first time I heard it because it resonated so much). I think a lot about the various paths his life could take and wonder about where the world will be in terms of understanding and accepting us neurodiverse people. I can’t think of a good way to end this comment but I’m glad more people are listening to autistic voices and advocates. Now if only we could get children’s hospitals on board (ours continues to strongly suggest we put our kid in ABA. Hard pass).
Thanks for this! We have recently realized my nine-year-old son is likely on the spectrum (diagnosis pending). I say recently, but looking back, I can’t believe we missed the signs. But then, I’m pretty sure I’m also on the spectrum and no one knew to tell me for over 40 years - at least we realized his earlier! This is new to me, and I am getting a little lost in the current correct terminology. A decade or so back, it would be Asperger’s (my son is classic for that), but now, is it mildly autistic, high functioning, or something else? I know a few people think there is no need for a distinction, and perhaps that is right, but having been around someone with severe autism before (again, I might be using the wrong words - this is hard to figure out!), it seem unfair to them and their much greater struggles and needs of accommodation. Thanks again for a great post and a good analysis of awareness vs acceptance!
The language around autism is ever changing. We are all learning. Aspergers is very much out. Low/high functioning is also on the way out. Describing support needs and levels of accommodation is a good place to start.
I got my autism diagnosis a bit over a year ago. At 40. That's too old. The good news is that now I am able to explain to employers and loved ones why I am the way I am and need things the way I do. But life isn't any easier, I just know finally after a lifetime of confusion that I'm not a weird failure. I'm autistic. I can not thank you enough for this Colin. You and Hank and Carson and Milo are absolute blessings to all of us. Thank you.
Colin, my oldest is on the spectrum and is 19 now. You are so very right when you state, "I think it’s much easier for the community at large to experience a child with a disability; adults with disabilities receive a very different treatment." He is able to work, but not without the hassle that some of his co-workers give him at times.
I, too, have learned a lot about autism since I did a report about it in fifth grade (circa 1993 or so!!!!); my niece is perhaps autistic, though they don’t know for sure yet, and neurodiversity is all along my family tree. Hurrah for parents who do the important work of learning about their cool kids.
I'm so happy we're moving towards acceptance rather than awareness, Silberman's book was a revelation (as was in a different key and we're not broken) ASAN does great work too.
My ultimate goal is to help create a hiring and training program for adults with high support needs because there is such a stunning drop off in support for people once they're older.
I'm happy Hank is doing well and wish you guys the absolute best
Thanks so much for sharing that! Our youngest child was born having seizures. He was in the NICU for several weeks while doctors tried every cocktail imaginable to stop the seizures. It was later, of course, when we learned he was autistic.
We went through a very similar journey with orgs like Autism Speaks; discovering they were not what they seemed.
Fortunately, our school system was, for the most part, fantastic. There were issues, of course, but for the most part, there were a lot of folks who truly cared about making sure he had the necessary accommodations.
He will turn 21 on May 1st, and I cannot fathom a world where he would be "cured". There is nothing to cure. We, generally neurotypical folks, are the ones that need curing! He has grown into an amazing person. I wouldn't trade that for anything.
I owe you a debt of gratitude for being the first person to bring my awareness to the concept of neurodiversity and the truth about groups like Autism Speaks. Little did I know then that I would someday have a neurodivergent kiddo of my own. Here's to autism acceptance and autistic joy and the loving embrace of all our uniqueness.
Beautifully expressed! Thank you so much. My grandson is high on the autism spectrum. He is such an incredible, lovely, brilliant human! I’m passing this on to his parents who have spent the last 10 years ensuring he is loved, accepted and able to develop his many passions. Your words are always a gift Colin! 💙
As an adult with ASD - thank you, thank you, thank you.
Thank you so much for writing this, Colin. This is beautiful and brought me to tears.
I’m 54 years old, and suspect that I’m on the spectrum, but finding testing & diagnosis as an adult is absolutely impossible. I’m already well into life, so I don’t expect a diagnosis to really change anything - I know myself and how to deal with the way my brain works. A diagnosis would be validating, though. It would help me understand myself better, and allow me to put a “label” to what I already know in my heart.
You know how, sometimes, you fall for a person’s art, and then how crushing it is when you learn that the way they live their life is a deep betrayal of the ethos their art represents (cough orsonscottcard cough). I am feeling the opposite of that feeling. Thank you, Colin, and thank you to the amazing autistic humans who enrich my life.
Oh, and thank you Hank, because this is this is, first and foremost, YOUR story.
I am the parent of an autistic adult. The paucity of funding for programs once they age out of the school system is criminal.
We have been lucky to get our son into an excellent group home, where he is not only cared for but encouraged to be as independent as possible. He works, travels independently and writes poetry. I know that with you and his mother in his corner your son will be a success. He looks like an exceptional young man.
Thanks for posting this.
Thank you for this, Colin! Your talking about and advocacy for Hank has been a comfort for me as we navigate finding acceptance for our autistic 6 year old (especially the verse in “Rise To Me.” Genuinely sobbed the first time I heard it because it resonated so much). I think a lot about the various paths his life could take and wonder about where the world will be in terms of understanding and accepting us neurodiverse people. I can’t think of a good way to end this comment but I’m glad more people are listening to autistic voices and advocates. Now if only we could get children’s hospitals on board (ours continues to strongly suggest we put our kid in ABA. Hard pass).
Thanks for this! We have recently realized my nine-year-old son is likely on the spectrum (diagnosis pending). I say recently, but looking back, I can’t believe we missed the signs. But then, I’m pretty sure I’m also on the spectrum and no one knew to tell me for over 40 years - at least we realized his earlier! This is new to me, and I am getting a little lost in the current correct terminology. A decade or so back, it would be Asperger’s (my son is classic for that), but now, is it mildly autistic, high functioning, or something else? I know a few people think there is no need for a distinction, and perhaps that is right, but having been around someone with severe autism before (again, I might be using the wrong words - this is hard to figure out!), it seem unfair to them and their much greater struggles and needs of accommodation. Thanks again for a great post and a good analysis of awareness vs acceptance!
The language around autism is ever changing. We are all learning. Aspergers is very much out. Low/high functioning is also on the way out. Describing support needs and levels of accommodation is a good place to start.
I got my autism diagnosis a bit over a year ago. At 40. That's too old. The good news is that now I am able to explain to employers and loved ones why I am the way I am and need things the way I do. But life isn't any easier, I just know finally after a lifetime of confusion that I'm not a weird failure. I'm autistic. I can not thank you enough for this Colin. You and Hank and Carson and Milo are absolute blessings to all of us. Thank you.
Colin, my oldest is on the spectrum and is 19 now. You are so very right when you state, "I think it’s much easier for the community at large to experience a child with a disability; adults with disabilities receive a very different treatment." He is able to work, but not without the hassle that some of his co-workers give him at times.
I, too, have learned a lot about autism since I did a report about it in fifth grade (circa 1993 or so!!!!); my niece is perhaps autistic, though they don’t know for sure yet, and neurodiversity is all along my family tree. Hurrah for parents who do the important work of learning about their cool kids.
I'm so happy we're moving towards acceptance rather than awareness, Silberman's book was a revelation (as was in a different key and we're not broken) ASAN does great work too.
My ultimate goal is to help create a hiring and training program for adults with high support needs because there is such a stunning drop off in support for people once they're older.
I'm happy Hank is doing well and wish you guys the absolute best
Thanks so much for sharing that! Our youngest child was born having seizures. He was in the NICU for several weeks while doctors tried every cocktail imaginable to stop the seizures. It was later, of course, when we learned he was autistic.
We went through a very similar journey with orgs like Autism Speaks; discovering they were not what they seemed.
Fortunately, our school system was, for the most part, fantastic. There were issues, of course, but for the most part, there were a lot of folks who truly cared about making sure he had the necessary accommodations.
He will turn 21 on May 1st, and I cannot fathom a world where he would be "cured". There is nothing to cure. We, generally neurotypical folks, are the ones that need curing! He has grown into an amazing person. I wouldn't trade that for anything.
As an autistic adult, thank you. This was so touching and lovely to read. 💜
Thank you I really appreciate this almost cried for real
(A Trans guy with autism) <3
Colin,
As a grandfather to two Autistic Grandsons I appreciate your insights and support for those
on the spectrum
Thank you
I owe you a debt of gratitude for being the first person to bring my awareness to the concept of neurodiversity and the truth about groups like Autism Speaks. Little did I know then that I would someday have a neurodivergent kiddo of my own. Here's to autism acceptance and autistic joy and the loving embrace of all our uniqueness.
Beautifully expressed! Thank you so much. My grandson is high on the autism spectrum. He is such an incredible, lovely, brilliant human! I’m passing this on to his parents who have spent the last 10 years ensuring he is loved, accepted and able to develop his many passions. Your words are always a gift Colin! 💙