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Wondering what’s the source of the Pinker quote? As an autistic person and academic contemporary of Pinker’s (my Ph.D is in cognitive linguistics), though a “lowly nobody” in the academic and cultural circles in which he and others like him move, I nonetheless admired much of his work … until reading this. I’m horrified, appalled …
I am horrified as well. I googled the phrase and it’s right out of his 2003 book (page 62):
Great article Sarah! Indeed the “about me, without me” situation arises all through the lives of people with differences-be it autism, Down syndrome, orientation or psychological difference-by doctors, therapists, teachers and even parents. It is the “fix it or eradicate it” approach to difference, the homogenization of society, the maintenance of the “safe, known” place. And despite the gains we have made in inclusion, diversity acceptance and recognition of ability are rooted ONLY if participants as yourself continue to speak up, and challenge those outdated judgements.
Thanks for sharing – I loved the tone of your piece.
I have read articles on Autism Research trying to determine if I have autism. Yes, I have certain quirks that could be considered on the spectrum (routine reliant, lack of empathy, etc) but nothing I have read where I can positively consider myself being autistic. Successful banking career, although looking back, I did not recognize opportunities for high level advancement and often intentionally squandered them! Would just like an article in layman’s terms, not full of fancy words and theories, that would give me more direction. I have contacted other Autism organizations who were less than helpful. I just want to know with some certainty that I am autistic or not!! Thanks for listening.
How would your life be changed by knowing?
I have 2 grown children on the spectrum and my husband has self diagnosed. He has struggled his entire life with “not fitting in” and with rejection of his ideas because a sizeable percentage of the people he comes in contact with don’t really like him. As we learned more about autism, he realized that that diagnosis explained a lot of his issues. But knowing that he is on the spectrum has not made him happier. A few people have been a little more accepting perhaps but the people that loved him before, still love him and the people that didn’t still don’t. He has no official diagnosis but he tells everyone that he is autistic.
It is clear that there is a huge range of characteristics that fall under the autism umbrella. It is a wide spectrum. Are you on it? Probably.
We have no way to test for autism other than looking at symptoms and behaviors and to say that the “tests” are imperfect is a huge understatement.
I am not a scientist and my expertise in the area comes from a lot of reading and trial and error in raising my children and living with my husband but I wish you the best.
Thank you for this article. Researchers often lose sight of the humanity of their subjects. Autism research is no different, with respect to that. In fact, perhaps researchers in general are autistic without even knowing it. I have Asperger’s-autism, and so I can relate to your feelings of isolation. Part of the reason researchers have done a poor job of engaging with Autistic people is because a lot of researchers are just not that ‘bright’! They may be ‘academically, and technically gifted’—but they lack the creativity to innovate better research protocols. So, don’t take it too emotionally—which is an ironic thing to say to an autistic person. :-).