Autism parent Amy Lutz did her damnedest to verbally maul the Neurodiversity movement last week, at Slate.com. I'm still trying to understand her rationale, because why would she publicly attack disabled people for the crime of appearing less disabled than her own child? Especially the very advocates who are fighting to ensure a better future for all autistic people -- including her son?
I'm used to seeing questionable writing at The Huffington Post, but was surprised to see Lutz's baldly biased reporting in the Slate.com Medical Examiner section. She only cited sources -- outraged parents like herself, mostly -- who also believe "...that those who argue the Neurodiversity position do so out of ignorance." A statement which is not merely offensive but untrue: those who support Neurodiversity tend do so because Neurodiversity is their reality, and the neurodiverse their community.
Autistic adults are not the only Neurodiversity supporters in the autism communities -- there are ever so many parents whose children share Lutz's son's "trifecta of autism, intellectual disability, and dangerous behaviors" yet support the Neurodiversity movement. I'm one such parent, and I'm not shy about speaking my mind. Others, like Kristina Chew, are also not hard to find. If one actually looks. If one is writing an article, rather than a tract.
Lutz feels the Neurodiversity movement is dangerous because it wants to hoodwink the public into falling for "a sanitized version of low-functioning autism." Which is disingenuous, as it is the autism parent communities (not to mention the public and the media) which crave stories of non-speaking autistics like Carly Fleischmann having communication breakthroughs, not Neurodiversity proponents.
Neurodiversity advocates, by contrast, understand that functioning can be fluid and unpredictable not just from autistic person to autistic person but over time and by situation. They understand that a person might be able to pass for "normal" or "neurotypical" yet still experience episodes of bolting, self-injurious behavior, lost speech, or meltdowns. But because, once again, such voices don't support Lutz's argument, they were ignored.
What Neurodiversity advocates do want is for Autistics to be the primary voices for autism rights. Which makes sense to me, when I hear self-advocates like Ari Ne'eman argue for presumed competence and better services for Autistics of all abilities, as he did at the 2011 Syracuse University Neurodiversity Conference:
"At the end of the day, [the self-advocate and the parent community] want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them. "By pandering to parents who see autism self-advocates as enemies with little concern for autistic kids' "real" needs, Lutz perpetuates a false and needlessly bitter gap between groups who should be working together on a common goal: better supports for autistic people of all ages. (Autistic children will spend most of their lives as adults, after all.)
Still, I am not sure who Lutz is talking about or trying to lambaste when she writes:
"What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed."Because her "real autism rights movement" is a description -- though backhanded -- of the Neurodiversity movement. Which has already presumed that "true neurodiversity" as its cornerstone, and moved on.
Lutz's "real autism rights movement" sums up the attitude of every self-advocate I've ever met or corresponded with from the Autistic Self-Advocacy Network, the Autism Women's Network, or the various individuals who have let us publish their writing here at Thinking Person's Guide to Autism (where our editorial staff includes self-advocates as well as parents whose children personify the diversity of the autism spectrum).
I ask you: Guess who is fighting tooth and nail for Lutz's autistic son's rights, accommodations, and respect not just as a human being but as a disabled person? The Neurodiversity movement. Guess who is arguing for "real" neurodiversity yet demanding a focus on a specific segment of the autism spectrum? Lutz.
Lutz is not wrong to be terrified about her son's future. Her Jonah sounds very much like my own Leo, and I share her concern over the lack of decent programs for autistic children and adults who need full time, 1:1 support. But by railing against the Neurodiversity movement, Lutz is stigmatizing and alienating the only people who care as much about her son's future as she does, and who will keep on fighting for him even when she's gone.
I'm not sure what it would take to get Lutz to change her mind and retract her article, or apologize to the Neurodiversity advocates she has mischaracterized so badly. (I certainly hope Slate.com runs a counterpoint.) If Lutz stays her course, then I hope one day her son achieves the ability to read her article, and tell her -- verbally, through AAC, or through Facilitated Communication -- that she blew it, colossally, and why. And if he never is able to read or communicate such things? The Neurodiversity movement will continue to have his back. Whether his mother is able to realize that, or not.
Please see the ThAutcast for additional criticism of Lutz's article, e.g., her character assassination of self-advocate Amanda Baggs.