Jennyalice and I have taken the Autism Corps idea one step further: We have created a petition asking Michelle Obama to meet with us, to discuss creating an Autism Corps based on the Teach for America Model.
We welcome feedback from all families affected by autism, and from autistics themselves. Would four to fourteen hours of one-to-one support make a difference in your life? You can comment below, or even better leave a comment next to your signature on the petition.
Petition excerpts:
We welcome feedback from all families affected by autism, and from autistics themselves. Would four to fourteen hours of one-to-one support make a difference in your life? You can comment below, or even better leave a comment next to your signature on the petition.
Petition excerpts:
"We would like to propose that Michelle Obama meet with Shannon Des Roches Rosa and Jennifer Byde Myers, two parents representing two different autism families' perspectives, and Rachel Cohen-Rottenberg and Lindsey Nebeker, two adults on the autism spectrum, to discuss creating an Autism Corps so as to address one of the most pressing needs of autism families and adult autistics: one-to-one in-home support.Please forward this post to anyone who might be interested.
"We would like to discuss taking those three factors and combining them into a nationwide organization dedicated to training volunteers to aid kids and adults with autism: an Autism Corps based on the Teach For America urgent action model, with the goal of providing autism families as well as adult autistics in need with between four and fourteen hours of weekly care."
I'm Canadian. But I strongly suggest having autistics fully involved in the decisions about this proposal. So far as I can tell, this has not happened. Many decisions have been made with no input from autistics.
ReplyDeleteThis sends the message that autistics have nothing worthwhile to say about our own future.
So long as autistics do not have a say in the major and minor decisions about our own lives, we will not have good outcomes as a group--just as is true of any other group.
I strongly recommend looking up People First groups (which are run by and for people judged to be intellectually disabled) and considering the effect self-advocacy can have on outcomes and on the extent to which a person requires assistance and services.
Michelle, we have had input from adult autistics who say that they need the kind of support we're proposing, but currently have no options for getting it.
ReplyDeleteIf the Corps comes to fruition, we hope to follow the autism.change.org model with both parent and autistic voices. Jen and I want so desperately to hear what our sons have to say (they're both eight and both have limited expressive language) there is no chance we would ignore the opinons of their adult peers on the spectrum!
Do you have a suggestion for a US-based person with autism who would like to be at the meeting? I can edit the petition to add their name.
Thank you for adding to this discussion. Truly.
I suggest that if you have had input from autistics, then say so clearly in your proposal/petition--and state your view that this input is essential.
ReplyDeleteI'm not going to suggest one autistic for you--that's up to autistics in the US. But they have to know they're welcome, needed, and can have a say in the decisions that are being made about their future.
If you do genuinely and fully include autistics in the decision-making about your proposal, including having autistics in leadership positions, I think it would be a very good step towards better outcomes for autistics.
No one would have ever thought, not so long ago (when it was considered by many people that I should be in an institution), that I could possibly contribute anything to science, much less have a decent publication record. It would not have happened if I had not been given the opportunity and responsibility.
Just a stray thought
ReplyDeleteIf this would get Obamas attention and discussions about it would it, could it get discussions for other learning (dis)abilitys that might overlap with Autism. Like my son whom has ADHD but has some stuff that is typical of Autism but does not have enough to make him autistic.
For an adult autistic person to come to the meeting, you might want to contact Ari Ne'eman, who heads up the Autistic Self-Advocacy Network, an organization run solely by autistic people. Ari is in his 20s and has already done some amazing work on this issue.
ReplyDeleteYou might also want to include an older autistic person, since we middle-aged autistics tend to have different challenges. Being diagnosed late in life, we did not receive any supports as children and have difficulty finding support as adults. I'd be very happy to work with you on this project, if you'd like.
Rachel, yes please! Jen and I would love to work with you on the Autism Corps.
ReplyDeletewe definitely admire Mr. Ne'eman's work, but we are hoping to consult with Lindsay Nebeker (contacted her accidentally via an @ instead of a DM, one day I will learn to distinguish between the two) as she is both an incredibly postive young autistic, and has a brother on the spectrum as well. So she gets both the self- and family-advocacy perspectives.
Jennifer, absolutely, encompassing other families with special needs is a long-term goal. But for now we need to stay tightly focused on autism, otherwise we risk diluting our momentum. We would need to establish ourselves first, then expand -- much like Teach for America started in only a handful of communities.
ReplyDeleteHi Squid,
ReplyDeleteThanks for your response. Drop me an email and let me know how I can help. My contact information is at the top of my blog page.
very good pt. and I would have to agree. I do like the option that it would eventually expand to encompass things that would intermingle with autism in a larger scale. Like my son.
ReplyDeletePetition signed, link tweeted. Let me know how else I can help get the word out.
ReplyDelete