Whose Planet Is It Anyway?

Friday, February 02, 2007

Who Speaks for the Children?

Occasionally, parents who feel uncomfortable with autistic self-advocacy will say something like this: "Well, it's fine that all you autistic bloggers can speak for yourselves, but don't try to tell me that I can't speak for my child. You don't know my child. Unlike you, he has a lot of problems, and he'll never be able to take care of himself or do the things you do."

That's a very emotional argument, but as far as I know, there aren't any autistic bloggers claiming that parents should never speak for their children. I don't think there ever were. It's just a big old scary straw man.

Of course parents are the best advocates for their young child, autistic or otherwise. They are the most intimately familiar with the child's day-to-day experiences and needs. I'd like to see the parents in the autism community become much more willing to trust their knowledge and instincts and feel much more empowered to speak up in defense of their child's dignity and personhood, instead of being intimidated into silence by self-proclaimed experts. As most of us know, there are some seriously ignorant professionals making unfounded gloom-and-doom predictions about autistic kids. Who should be speaking for these kids? Not the prejudiced so-called experts who have no clue about autistic children's abilities and potential, and not the pity-mongering nonprofit organizations that have been using images of devastation and epidemic as a fundraising tactic—but informed, caring parents.

One of the ways that parents can become more informed is to read blogs and other websites by autistic adults. Not because we know more about a particular child than his or her parents—we don't—but because our experiences can provide more background and insight to help parents gain a broader perspective.

It's all too easy to make limiting assumptions without being aware of it. Let's imagine a society where almost all parents were firmly convinced that at least one of their children would never be able to hold a job or to live independently. Does that sound like an unlikely hypothetical future? Well, actually, it isn't. I'm describing the not-so-ancient history of almost every society on Earth. The children who were thought to be destined for a lifetime of total dependency were females.

Those who spoke out against such attitudes (feminists) were ridiculed and dismissed as mentally incapable of understanding their situation—sometimes by their own parents.

Most of the parents who held those beliefs meant well and had their daughters' best interests at heart; it just never occurred to them to question their cultural assumptions.



  • As most of us know, there are some seriously ignorant professionals making unfounded gloom-and-doom predictions about autistic kids.

    I tried trusting the so called experts for the first 6 months after receiving a diagnosis for our son. It quickly became evident how clueless many of them were (some were actually quite helpful). The worst thing was that none of the so called experts valued our input as parents at all.

    I do get a lot of good information, as well as a lot of hope, by reading the blogs of autistic adults. Keep it up!

    By Blogger Club 166, at 3:19 PM  

  • This is a good topic to talk about (but we all know a little "taboo"). I like to coin parental prejudice as "iron clad."

    We all want to think we are good parents, but it sure suits us better in autism to listen.

    By Blogger Estee Klar-Wolfond, at 4:20 PM  

  • When we first received a diagnoses we had a few good instincts [and a lot of bad ones] and zero knowledge. We closing the gap with help from some professional experts and a lot of self teaching.
    Now with blogging we get so read first hand the struggles and joys of individual families. It's reassuring to know that there isn't a right or wrong way, just a variety of people helping with a huge disparity and variety of differences.

    By Blogger Maddy, at 6:02 PM  

  • Thanks ABFH for another good post.

    I had an experiance some years ago with a set of parents who had an autistic son.

    I was unprepared for any such meeting but I was there for other reasons so I agreed to the request. The autistic "specialist" called me into her office and told the parents that I was an autistic with unusual language skills. I should have known at that point that this wasnt going to be productive but I didnt.

    The first thing that the parents seemed to want from me was some kind of language or code that I would give them so they could comminicate with their son. Um....

    When I didnt have an answer to their question they went about talking amongst themselves as if I wasnt there.

    When I did speak( not with any answer,but just to begin trying to start talking to them) they were startled but then soon began to tell me why I couldnt understand because their son wasnt like me. When I then didnt respond, they went back to talking amongst theselves.

    When I finally exused myself and left the room, I remember passing their son in the hallway just outside of the doorway to the open door of the office. He was playing with leggos and I wondered how he felt about what he had heard.

    I dont know enough about this family to make judgements about them. All Im trying to do is relate something that *I* experianced and how it made *me* feel.

    Being born autistic doesnt give me any special talent for knowing how to tell parents whose kids have simalarities in common with me, how to raise those kids. I DO think however that my relating some of my experiances can benefit these parents and that I can and am learning from them in what I read from them.

    Such learning requires a cooperitive spirit on everyones part. Id like to learn to be more cooperative in this way because I think its important to everyones future.

    By Blogger Ed, at 9:02 AM  

  • I think this is wonderful advice. I've certainly learned a lot reading your blog and others in the last year!

    By Blogger Attila the Mom, at 8:23 PM  

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