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Monday, August 22, 2011

Showcase: Autistic Hoya's Self-Advocates: Parents Are Not (Always) Our Enemies



Self-Advocates: Parents Are Not (Always) Our Enemies

by Lydia

After reading conversations in the comments on blog posts or news articles, or even on posts on social networking sites like Facebook and Twitter, it is very easy for self-advocates to assume that all (or at least most) non-Autistic parents of Autistic children are our enemies. After all, most people who want to cure Autism are parents; most people who claim that "high-functioning people with Asperger's" aren't really Autistic; most people who claim that all self-advocates are in fact "high-functioning people with Asperger's" (which isn't true); most people who want research to focus on curing Autistic children; and most people who loathe the word "Autistic" and much prefer "person with Autism..." Well, most (but certainly not all) of these people, or at least the most vocal among them, are the non-Autistic parents of Autistic children.


The vitriolic fights between self-advocates and parents can be found quite easily anywhere on the internet -- and occasionally, in person as well. There was, actually, a very nasty email exchange quite full of ad hominems and personal attacks about two weeks ago among some of the members of my subcommitteealong those lines. (I did not add fuel to the fire, for the record.) Parents get furious with self-advocates for presuming to understand their children; self-advocates get furious with parents for completely misunderstanding the entire nature of Autism. Parents make us out to be the villains; self-advocates make out parents to be the villains.


This in mind, it never ceases to surprise and excite me when I actually encounter parents who agree with any or all of the issues most important to Autistic self-advocates. Last week, I had a wonderful conversation with the non-Autistic mother of a young Autistic son. Her son is non-speaking and has some difficult, destructive behaviors. According to her, he regressed with Applied Behavioral Analysis (ABA), but is doing very well with the TEACCH program.


This woman told me how she eschews the phrase "person with Autism." "My son does not have Autism," she said, "he is Autistic. Autism is a part of him. It's part of his personality. I love him the way he is. Other parents don't get it." She told me that she doesn't want to cure her son. "I'm so inspired by you -- by Autistic adults who I read on the internet. I'm fascinated by you. I wish other parents would understand that my son, their children, are going to grow up to be you, Lydia. They're going to grow up to be Ari [Ne'eman.]"


"Parents think, I got a good placement for my child, I don't want to rock the boat. No, sorry, I can't help you," she said to me. "But what happens to one child affects all of our children. We have to treat it like a civil rights issue." Now that piqued my interest, because the self-advocacy and neurodiversity movements treat our advocacy with the civil rights model as opposed to a medical model. It was strange and yet reassuring to hear this from a parent!


Not only is this woman not Autistic, but her son is what most people would call "low-functioning" or "severely Autistic." She fits the profile perfectly of so many parents who viciously attack the self-advocacy movement. Yet she shares in many of our goals and beliefs. So yes, the mythical parent allies of self-advocates do in fact exist. Let's remember this before accusing all parents of being our enemies.

2 comments:

sharon said...

What an excellent topic. There is so much misunderstanding between those who are able to argue for their rights as Autistic people, as they should, and those of us who are struggling to raise a child with Autism. And while I might not agree with all the perspectives of the mother you mention I sympathise, just I like I sympathise with those on the spectrum, with her perspective.

usethebrainsgodgiveyou said...

I kind of moved away from the "SAVIOR" complex when I admitted that I'm autistic, myself, in many ways. I just don't remember having what I percieved as severe communication deficits that my son had. Maybe I did. Being one of 10 kids, mom said she never paid that much attention! Oh, well...she did love me unconditionally, the greates love of all.

You begin to empathize with your child when you accept them for exactly who they are. There is good and bad in all of us. I look for the good in my son, most of the time, and am amazed at how far he has come, considering at one time his language was totally echolalic.

What was my point? Oh, yeah, parents have to grow up and give their children the love they need, not the therapy, at some time...or I'd think a part of their soul would be missing. Nobody in this life is perfect, and it's all going to end one day (nobody gets out alive) so you might as well enjoy it. Parents, grow up, if you don't find a way to enjoy your children, they aren't going to have good thoughts of you. You'll be crying in your beer, alone! Primary therapist and pharmaceutical dispenser do not a good parent make. Use your heart, and treat your children the way you would want to be treated. Quit deifying experts.

Sorry...you inspired me, Lydia. I didn't wake up until my son was 10, and I thought he's gonna be gone, and will have no good memories of me. It became all about him, instead of being a hero and slaying dragons.

He is the funniest person I know, makes me belly-laugh at least once a day...gives me shit constantly and I give it back. I've got his number, anytime he is a pain in the ass, I take away allowance, which really ticks him off. I prefer this to upping his ritalin prescription, which he no longer takes...he's "clean" so far as drugs.

God dang it people, wake up and find a way to enjoy your kids! I have seen moms with SEVERELY autistic kids do it. They amaze me, almost as much as their kids. There are your heroes, the ones you should be deifying.

Do whatever it takes. Change YOURSELF, not your child. That's the key!

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