As the father of a highly gifted autistic son and (likely but undiagnosed) person somewhere on that spectrum, I am about as certain as I can be that autism is an inborn characteristic that has nothing to do with good or bad parenting. What we can do as parents is recognize that all neurodivergent people need help and guidance to navigate in a confusing and over-stimulating world.
I got the ASD as well. Also diagnosed later in life. I function relatively well. I finished a degree, got a job. But since I got a job I walked against my limits and now I am having a burnout.
And I am a mild case. But in the community of ASD. Pretty much 70% of the people have it way worse. They can't work, they can't function well in society. But in stead of trying to help those people navigate the social vagueries in life, the activism movement is trying to do the impossible, which is forcing everybody to accept and accommodate people with ASD. And whilst that is a noble goal. It is near impossible. While some poeple will treat us better most won't. Most people don't even know of the existence of the neurodiversity movement. Let alone the rest of what the activism part expects of others. I think the focus is way too much on forcing others to accept people with ASD and way too little in helping people with ASD navigating the complex, uncertain and vague social world. When I look at all the supposed self-help out there, it's all about "accepting ASD, ASD hides a lot of intellect, people with ASD are very trustworthy. Good with detail and so on. But I find very few that try to help people with ASD specifically with what makes their lives hard.
And I am not even starting about those on the "spectrum" that have it so severe that they can't even communicate effectively and will be dependent on their parents for the rest of their lives.
A spectrum is all nice and well but in hides so many levels of severity that the movement can never actually find decent agreement on what to do for everyone. From what I gather of those that don't function well, there is little or no help for them. Not from the movement, not from all those nonprofits that supposed to help people with ASD. Not from from all those psychologists that just prescribe CBT for everything, or EMDR because everything is trauma. But in the end, those things only help a few for short durations, but the majority of those that are at home, living of a minimum income that the government provides and can't find work, or can't last long at a job. There is very little that helps them. And all that focus on acceptance of ASD. Gives nice feelings of belonging within those groups of those that preach to the choir, but in the end they are not helped in finding a way in live that does not expect them to act like others, or try the impossible of forcing everyone around them to act like they are accepted everywhere.
I think the focus should move a bit more to help people with ASD that do not have a voice, because they have no position or have no means to speak up, or can't actually speak in a way that many can understand.
I have talked to some in the neurodiversity movement about this and I get brushed aside, according to them all I say is myth and all is well. I think this pointless focus on philosophies is not doing anything and just distracts from what is important. How to help those who actually need it.
And yes I am frustrated about the movement and am saddened about the focus always being with those people with ASD that have PhDs, have jobs in It and earn a decent living, have a partner, have children and so on. But what about all those people that do not have this, and cannot find a way in live without decent help? Maybe focus a bit more on that.
But now I'll stop my rant of cynicism. I am just dissapointed and thought I'd vent my frustration here.
I think it is a mistake to feel that the search for treatments for autistic people in some way devalues their neurodiversity or is trying to erase autism. Autism can carry a burden of symptoms which children and their families can greatly desire to be alleviated. It isn't the autism per se that researchers are looking to treat anyway, it is far too complex a condition to view it that way. I don't see why some sort of treatment for autism is really much different from treating ADHD (which is co-morbid with autism as well). You can love, value and respect autism and austistic people, and still hope that science finds treatments that might be useful
As the father of a highly gifted autistic son and (likely but undiagnosed) person somewhere on that spectrum, I am about as certain as I can be that autism is an inborn characteristic that has nothing to do with good or bad parenting. What we can do as parents is recognize that all neurodivergent people need help and guidance to navigate in a confusing and over-stimulating world.
I got the ASD as well. Also diagnosed later in life. I function relatively well. I finished a degree, got a job. But since I got a job I walked against my limits and now I am having a burnout.
And I am a mild case. But in the community of ASD. Pretty much 70% of the people have it way worse. They can't work, they can't function well in society. But in stead of trying to help those people navigate the social vagueries in life, the activism movement is trying to do the impossible, which is forcing everybody to accept and accommodate people with ASD. And whilst that is a noble goal. It is near impossible. While some poeple will treat us better most won't. Most people don't even know of the existence of the neurodiversity movement. Let alone the rest of what the activism part expects of others. I think the focus is way too much on forcing others to accept people with ASD and way too little in helping people with ASD navigating the complex, uncertain and vague social world. When I look at all the supposed self-help out there, it's all about "accepting ASD, ASD hides a lot of intellect, people with ASD are very trustworthy. Good with detail and so on. But I find very few that try to help people with ASD specifically with what makes their lives hard.
And I am not even starting about those on the "spectrum" that have it so severe that they can't even communicate effectively and will be dependent on their parents for the rest of their lives.
A spectrum is all nice and well but in hides so many levels of severity that the movement can never actually find decent agreement on what to do for everyone. From what I gather of those that don't function well, there is little or no help for them. Not from the movement, not from all those nonprofits that supposed to help people with ASD. Not from from all those psychologists that just prescribe CBT for everything, or EMDR because everything is trauma. But in the end, those things only help a few for short durations, but the majority of those that are at home, living of a minimum income that the government provides and can't find work, or can't last long at a job. There is very little that helps them. And all that focus on acceptance of ASD. Gives nice feelings of belonging within those groups of those that preach to the choir, but in the end they are not helped in finding a way in live that does not expect them to act like others, or try the impossible of forcing everyone around them to act like they are accepted everywhere.
I think the focus should move a bit more to help people with ASD that do not have a voice, because they have no position or have no means to speak up, or can't actually speak in a way that many can understand.
I have talked to some in the neurodiversity movement about this and I get brushed aside, according to them all I say is myth and all is well. I think this pointless focus on philosophies is not doing anything and just distracts from what is important. How to help those who actually need it.
And yes I am frustrated about the movement and am saddened about the focus always being with those people with ASD that have PhDs, have jobs in It and earn a decent living, have a partner, have children and so on. But what about all those people that do not have this, and cannot find a way in live without decent help? Maybe focus a bit more on that.
But now I'll stop my rant of cynicism. I am just dissapointed and thought I'd vent my frustration here.
I think it is a mistake to feel that the search for treatments for autistic people in some way devalues their neurodiversity or is trying to erase autism. Autism can carry a burden of symptoms which children and their families can greatly desire to be alleviated. It isn't the autism per se that researchers are looking to treat anyway, it is far too complex a condition to view it that way. I don't see why some sort of treatment for autism is really much different from treating ADHD (which is co-morbid with autism as well). You can love, value and respect autism and austistic people, and still hope that science finds treatments that might be useful
Agreed on the comorbidities. That's basically what I said in the main column: https://www.science.org/doi/10.1126/science.adq6625
A very good, thoughtful and fair piece. Thank you.