~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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15 December 2009

Parents in the Autism World

Do Autistic self advocates view parents of autistic individuals as enemies? Do they perceive parents who support organizations such as Autism Speaks as opponents?


It should not be forgotten that a portion of Autistic self advocates are parents of autistic children themselves.

Enemy is a strong word to use toward parents who are most often at the hands/mercy of educational and medical service providers. Information about autism that parents may receive from these service providers often does not focus on self advocacy and equal rights for autistic children. Instead, provided information tends to focus on only medical views of the autistic condition, in addition to services and treatments provided for autistic children. While some of the information contained in the references may be helpful and worthwhile, there is often nothing educating parents on the existence of the adult Autistic community and its literature and organizations. Parents are given little to nothing in regards to the concepts of autistic self advocacy, disability rights, and the social model of autism.

A parent's main concern is going to be to help their child by utilizing whatever means are available. Good Parenting 101 = Help Your Child No Matter What. Parents will naturally lean toward autism-focused groups and/or organizations offering help and support. Inspecting the inner-workings of such groups and organizations may be the last thing on a parent's mind when they are knee-deep in making sense of the new course or path their life has taken.

People who have never been exposed to disability on a wide scale cannot even begin to fathom why an autism-focused organization--such as Autism Speaks--may not necessarily be all that it claims to be. After all, why on earth would organizations that are claiming to help the disabled have nothing but only the best of intentions?

Self advocacy and empowerment of the disabled is a giant step in thinking when coming from a place of needing healing, help, and support, especially when the support services offered have come from a one-sided medical perspective.

Some parents of autistic children are extremely proactive, sensitive, and thoughtful. Some parents latch on to the first thing they see/try and cling like a vine. Some parents reach out and contact other parents of children on the spectrum and ask what those parents are doing. Some parents go home, Google autism, and BOOM: Autism Speaks and Autism Research Institute appear.

It is of significant importance to remember that heart-broken well-meaning parents are going to be quite confused when they see Autistic adults protesting an organization that has essentially served as a resource to parents of autistic children. Many parents who feel they have done a decent job navigating the world of autism are going to be shocked when they see a protest sign with a message reading: Autism Speaks Does Not Speak for Us! Or: Nothing About Us Without Us!

Autistic Self Advocacy Network (ASAN), The Autism Acceptance Project (TAAProject), and TASH are organizations that are just as valid for parents to know about and utilize as resources. Are we fully preparing autistic children for life if we ignore the voices of autistic adults? What message does that send to ignore autistic adults and exclude them from important decision-making processes?

Thanks to the intolerant structure of our society, many people need to be taught to release fear, pity, and myth in order to accept what is different. It is a shame that we seem to be born with acceptance and tolerance intact, however, some of us are poisoned by the social climate we inhabit (ex: media throwing around the word retard as if there is no consequence, therefore feeding and perpetuating damaging conscious and subconscious stereotypes).

Many upright well-intentioned people do not know how to accept autism because it is not being taught on a wide enough scale. People have to want to accept autism, and only then can they Google it and make informed decisions regarding the sources presented.

There is a great void to be filled. As far as the Autistic community is concerned, we have a lot in common with parents, only it needs to be explained that the *means* of cure is not effective toward our common ends. I would like to see the growth of auxiliaries to autistic self advocacy organizations and groups so that parents may get involved in a pro-self advocacy spirit.

Parents of autistic children are not the antagonists of the Autistic community. They are potentially our greatest support.

[26 March 2010: A few readers have commented that they DO NOT feel that tolerance is innate from birth. While I agree that tolerance must be taught from as early an age as possible, the sentence a few paragraphs above, "
It is a shame that we seem to be born with acceptance and tolerance intact..." is intended to show that we are products of our environments. For example, children who are raised in homes that teach love and tolerance have a high chance of being loving and tolerant in adulthood.]

15 comments:

  1. I'm so glad I came across your blog. I love what you have to say and look forward to hearing more. My daughter has asperger's and I really like hearing opinions from others on the spectrum.

    Much love,
    Leslie
    http://www.outrunning-autism.blogspot.com/

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  2. Thanks for your support Leslie!

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  3. @Alex: Thank you for visiting Aspitude!

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  4. My first stop here and am sure it won't be my last! I have Asperger's syndrome, my oldest has it as well. My youngest son has PDD/NOS. So... yeah, we're a handful!

    Anyway... nice post and I concur with its sentiments... I'll definitely be back!

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  5. Elesia, have you seen Shannon des Roches Rosa's article "Identifying and avoiding autism cults"? http://www.blogher.com/identifying-and-avoiding-autism-cults. Shannon, in addition to columns at Blogher, blogs at Squidalicious http://www.squidalicious.com/ (disclosure: Shannon is a friend IRL)

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  6. Great post. I agree fully. As I always say my daughters are not broken or sick.

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  7. @Heather: thank you, and please do visit again! :)

    @Liz: I will check out the links you sent. Thanks for visiting Aspitude!

    @autismonabudget: Your daughters are lucky to have a mom like you. Thanks for visiting!

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  8. Elesia,
    Great reminder for us all! Thanks! I wrote to you awhile ago and never checked back because life is crazy. You asked me to email you, but I can't b/c I don't have outlook set up and it takes me to the outlook when I click on the link to email you. Would you mind emailing me? My email is homefiresburning at gmail dot com (at and dot are the symbols @ and . ) Thanks!

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  9. Elesia,
    I am again humbled and amazed by the extraordinary poise and compassion you contribute to these conversations. We need to realize that neurodiversity occupies a very unique place along the frontier of Civil Rights in that the "opposing parties" are all, typically speaking, grounded in and compelled by love. Thus, it is impractical and unnecessary to overly criticize parents who may be misinformed. Polirization with these issues is counter-productive. Until it is all of us, it is none of us. Thank you for your wisdom!
    Michael

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  10. Thanks for your support Michael!

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  11. Elesia,

    As a parent, I can attest to a lot of what you said. I found the neurodiversity movement pretty much by accident. While the doomsday scenarios never rang true for me (I certainly was *not* going to put my son in an institution, no matter who recommended it), for months it felt like my husband and I were completely alone in that.

    There is a lot of misinformation and highly biased information out there. It's still being handed to parents of newly diagnosed children as if there's only one way to look at it. That's why I think it's so important to bring the "alternative" view to the mainstream media.

    On the other hand, I would have to disagree that people are born tolerant. Babies are born completely and utterly self-absorbed. They learn tolerance or intolerance. Whether as children or as adults, they also get to the point where they can choose whether to go along with what they've learned or set their own course. Children are no less cruel and no less intolerant than adults; it simply depends on the child, just as it depends on the adult.

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  12. Thanks for visiting Stephanie! :)

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  13. "On the other hand, I would have to disagree that people are born tolerant. Babies are born completely and utterly self-absorbed. They learn tolerance or intolerance. Whether as children or as adults, they also get to the point where they can choose whether to go along with what they've learned or set their own course. Children are no less cruel and no less intolerant than adults; it simply depends on the child, just as it depends on the adult."

    I agree. If children were born tolerant, would not it make sense that they stay that way? Most children want to do what is right and please their parents. Yet sometimes they fail to do well in class, say some rude things, do not include everyone, and such.

    Teaching tolerance must be done early, just like early intervention. When children mature, they begin to take their opinions more seriously, and therefore become less flexible. Not to say that adults are incapable of learning tolerance. However, it takes more effort.

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  14. I have added a note at the bottom of the blog above to clarify my intentions when I wrote that we seem to be born with tolerance intact.

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