Against Parent-Centered Autism/Disability Groups

July 31, 2014 at 11:13 pm 5 comments

For a long time, I’ve been concerned about how parent-centric autism community organizations are.  I understand the history behind it- initially the only children with autism who were identified were non-verbal and had very limited abilities to take care of themselves, and as more “high-functioning” children and adults have been identified this has changed. More of us are forming our own support groups and communicating and advocating for ourselves, as with many other disability communities. Still, many disability organizations are run by adults with disabilities, but the autism community remains the exception to that rule. This is changing, but Autism Speaks, in particular has outright refused to allow people on the spectrum on their board– the one time they did allow John Elder Robison, a self-advocate he eventually resigned after finding that no matter how hard he tried, he could not change the culture of the organization from within.

A major problem with this culture of parent-dominated organizations is simply that it creates the impression that all parents with autistic children (whether young or grown) truly want and know and will do what’s best for their children. But this is not necessarily the case. Adults on the autism spectrum who have experienced neglect, abuse and opposition to self-advocacy from their parents feel as if their experiences are denied. It’s often assumed that, we’re adults, we “survived” autism to adulthood, so we must not need help, right? Think of the children! Only the children!

Some of us have parents who believed in us, and fought for us every step of them way. I was very fortunate in that regard, though I’ve still had disagreements with my parents over decisions I’ve made as an adult, and often I did not feel truly free to make decisions due to my financial dependence on them. I see many autistic adults that have great relationships with their parents, but are dependent on them. I wonder- how conditional is that relationship? If they are obedient, they keep their support. But what if they come out as GLBT? What if they have a *consenting adult* relationship (even a heterosexual one) that the parents or social services disapprove of? What if they become involved in a religious practice, or even a hobby that the parents don’t like?

My parents are very open-minded people, they have been able to adjust to the unconventional life that I choose. But if they hadn’t been, staying in the closet(s) could’ve been a matter of being homeless and hungry or not. This is a big problem for many GLBT youth and Pagan youth, but for those of us with disabilities, these intersections loom even larger. How much power over our lives can we have in group homes, child or adult foster care and other kinds of social services? How many types of social services are influenced by conservative (religious or secular) belief systems- even public services. Separation of church and state my arse.

Frankly, I wouldn’t be surprised if many autistic adults marry or otherwise rush into relationships that may not be to their best advantage, partly so they can get another means of support. I wouldn’t be able to live on my own without my partner currently. I was lucky to find a partner who is supportive and understanding and *not abusive*, many of my peers aren’t so lucky. I’m concerned that the high rate of abuse experienced by autistic people may used by some parents to say “See? Autistic people can’t have healthy adult relationships. We need to protect them from themselves.” There is a history in the United States, many European countries and Australia of sterilizing children and adults with disabilities without their consent or knowledge- or sometimes even that of their parents (particularly if the parents were low-income, immigrants and/or people of color). Disabled youth often are not given proper sexual education, leaving us more vulnerable to abuse, unsafe sexual-decision-making or simply feeling that our sexuality does not exist, or is “inappropriate” if we are treated as eternal children.

Autistic adults need to believe that *we have the right* to represent ourselves in autism organizations and advocate for the best interests of all autistic people, across the human lifespan, regardless of ability level(s), income, education, ethnicity etc. Parents and professionals (teachers, therapists, social workers etc) ought to be our partners, I am not trying to create antagonism here. For those of us who come from families who are abusive, unsupportive or simply unable to help due to lack of finances, health- I hope the rest of the *autistic and autism and disability communities can be wonderful surrogate families. Together, we can take care of each other!

*I use the term “autism community” to describe the groups led by parents & professionals who promote “concern for/awareness” of autism, vs. the *autistic community* by and for autistic people that arisen on the Internet and spread into offline support/advocacy groups.

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Entry filed under: Autism/Asperger's. Tags: , , , , , , , , , , , , , , , .

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5 Comments Add your own

  • 1. Rose F  |  August 1, 2014 at 4:48 am

    Reblogged this on Rose B Fischer and commented:
    Since I have no direct experience with autism or autism spectrum disorders, I’ll try to link/reblog valuable commentary as I find it. (Sorry, no time to post Satkia stuff today.) !

    Reply
  • 2. Elz Curtiss  |  August 1, 2014 at 3:57 pm

    Thank you for stepping up with this! When children on the spectrum grow into adults on the spectrum, they need places, spaces, and voices for themselves. And science needs to start tracking adult lives on the spectrum, to give those children — and their parents — a better sense of what they’re working so hard to achieve.

    Reply
    • 3. caelesti  |  August 1, 2014 at 10:57 pm

      You’re welcome! Thank you for your support! Good point about research/tracking- I think all too often, after we go past K-12 system we tend to “disappear” and folks who worked with us, don’t know how we turned out.
      Then of course there are many adults who were identified later in life (or never at all) and some of them are parents as well (to both autistic and non-autistic kids)

      Reply
  • […] had her when they were teenagers.A smart teenage girl comes of age in a small town with her self-centered parents who had her when they were […]

    Reply
  • 5. Reclaiming Autistic Identity | The Lefthander's Path  |  April 1, 2015 at 1:23 am

    […] See also: Against Parent-Led Autism/Disability Organizations […]

    Reply

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