I listened to Judy Escher's seminar she did with The Free Press, and I really appreciate the nuance she brought to this conversation! While others who want to focus on cure research completely trash the neurodiversity movement (and tell "higher functioning" people like me that all my problems are fake), she actually gave lots of credit to the movement's ability to improve some autistic people's lives. She says the problem is that it often ignores the struggles that children like hers face--and sometimes even the fact that high functioning autistics can't function highly at all. As someone who's had to constantly beg service providers to see I actually need help, that was refreshing to hear! I agree that the changes to the DSM-5 really only benefited me, but failed autistics like the Escher's. Just because I like not having to say PDD-NOS anymore doesn't mean the autism name alone works for everyone. And I think the fact we're still trying to find the best way to describe our "functioning" or "support need" level proves that.
Despite agreeing with these points, I'm still very nervous about trying to find a cause for autism, especially one that can be found through prenatal testing. I can see how this would cause mass abortions of autistic children before they're even born, similar to what has happened with the Down Syndrome community. As an autistic Christian, I want to know how we can find these scientific answers without falling into some real twisted eugenics that says some of God's image bearers are better off dead than imperfect.
And thank you for listening! Also preventing parents from feeling unnecessary guilt is a really valid reason to want answers too. Heck my mom was subjected to a "refrigerator mother" speech even though it was definitely not the 1970s anymore!
I hope to find a way not to die, or at least leave my son with the legacy of love to let him know that he is not really alone. And I think I've figured it out. When my husband died suddently four years ago, it was my son's belief that Dad just could not be dead. He insisted we search for Dad in all the places we had enjoyed as a family before my husband became ill. The result was Allen's realization that Dad now lives in Heaven and he still loves Allen.
I listened to Judy Escher's seminar she did with The Free Press, and I really appreciate the nuance she brought to this conversation! While others who want to focus on cure research completely trash the neurodiversity movement (and tell "higher functioning" people like me that all my problems are fake), she actually gave lots of credit to the movement's ability to improve some autistic people's lives. She says the problem is that it often ignores the struggles that children like hers face--and sometimes even the fact that high functioning autistics can't function highly at all. As someone who's had to constantly beg service providers to see I actually need help, that was refreshing to hear! I agree that the changes to the DSM-5 really only benefited me, but failed autistics like the Escher's. Just because I like not having to say PDD-NOS anymore doesn't mean the autism name alone works for everyone. And I think the fact we're still trying to find the best way to describe our "functioning" or "support need" level proves that.
Despite agreeing with these points, I'm still very nervous about trying to find a cause for autism, especially one that can be found through prenatal testing. I can see how this would cause mass abortions of autistic children before they're even born, similar to what has happened with the Down Syndrome community. As an autistic Christian, I want to know how we can find these scientific answers without falling into some real twisted eugenics that says some of God's image bearers are better off dead than imperfect.
That is a really important point, thank you. I should have made mention of that danger (eugenics / mass abortion)—and will do so in the future.
If nothing else, I would love some “cause” to be found so that moms can stop feeling like it’s their fault because they took Tylenol, etc. etc.
Thanks for engaging.
And thank you for listening! Also preventing parents from feeling unnecessary guilt is a really valid reason to want answers too. Heck my mom was subjected to a "refrigerator mother" speech even though it was definitely not the 1970s anymore!
Ok, so I was *literally* just starting to work on a piece called "I'm Not Allowed to DIe" and this was before I read your piece.
You need to write that piece!
Ha I will. I thought Escher's piece was though-provoking but a lot of it made me angry as well.
Message me and tell me more. Would love to hear your thoughts.
Same. Ugh. So angry.
I hope to find a way not to die, or at least leave my son with the legacy of love to let him know that he is not really alone. And I think I've figured it out. When my husband died suddently four years ago, it was my son's belief that Dad just could not be dead. He insisted we search for Dad in all the places we had enjoyed as a family before my husband became ill. The result was Allen's realization that Dad now lives in Heaven and he still loves Allen.