Susan Senator
All happy families are not alike...
All happy families are not alike...
The Autism Manifesto part I
I am now part of a large group of parents whose kids are on the autism spectrum in my town and this is one group to be reckoned with. I dreamed of such a group fourteen years ago, when Nat was just diagnosed at three, but back then the parents were either so disenfranchised and therefore happy to be out-of-district, or they were afraid to be at odds with the administration, so not much happened. Plus, the administration was playing “catch-up,” whereby they needed to regroup from the new numbers of ASD kids suddenly in the system, and they needed to figure out what had to be done.
Well, they’ve had plenty of time, I would say…
Now there are so many more families aware of autism and dealing with it. These are savvy moms. And they are well-educated about what their children need, and they are not going to put up with band-aid approaches to autism education. They are primarily interested in quality inclusion of their children in their neighborhoods schools, all the way through high school. They are serious about needing each school to be accountable to each child, which is tough in this era of school-based management, when most of the time the SPED director is in Town Hall somewhere, and not at the schools either physically or metaphorically.
This group is going to make some waves. I am determined that there will be positive changes in our town vis a vis autism education. I am the old lady of the group, too: they are all younger and more energetic, which is great.
I am telling you all this to exhort you to follow this example, if you have not already done so: organize the other ASD parents in your town or school district.
1) Host a meeting and get to know who they are.
2) Put up signs at every school.
3) Start a yahoogroup so that there is a safe way in to discusss your town’s issues.
4) Meet with the administrators and forge a collaborative, but not co-opted, relationship.
5) Attend School Committee meetings and make courteous but meaningful comments during Public Comment, so that your School Committee and Superintendent hear about ASD and see that this is a large group that means business.
6) If all else fails, go to your local newspaper, write op eds and letters to the editor, and get them to report on ASD issues.
Autism is of huge public interest in terms of expense and population. The more the people of this world know about us and our kids, the more hope we have of 1) understanding of our children and rachmunis (compassion, understanding) for them; 2)a better education for our children; and 3) a better life for our children.
Remember: if the world is mostly neurotypical, then the world by definition has the social skills to accommodate our atypical kids. It is therefore the world that needs to be flexible and can be. But we have to continue to push and explain, gently, but consistently.
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Fundamental Error there.
As I point out in my DVD there is a triangle of autism,
That is parents on one side, professionals on another but autistic people at the base, for without us there would be nothing to campaign about.
Autistics of the world Unite say I.
We have had enough of parent run organisations, as I set out in my manifesto to the NAS it is time for “a piece of the action”
http://www.larry-arnold.info/news/Action.htm
I appreciate your viewpoint, that autistics must represent themselves in organizations. But isn’t this true only for adults? During childhood, it is the parents in the school systems who are doing most of the advocating. There is a huge need for we parents to help our children. For adult autistics, the advocacy is more of a partnership, of course.
One problem has been that “parent organizations” have been controlled by non-autism spectrum parents, who refuse to respond to autistic adults EVEN when the autistic adults are parents of autism spectrum kids!
But your points are probably very important ones, from what I’ve seen schools will actively work to keep parents of all handicapped kids from meeting and talking to each other. They don’t encourage the parents to form support groups because very soon they’d be comparing notes on the kinds of services their kids get and the kind of gross abuses they get from the schools: kids, teachers and administrators.
Locally, for some reason, there was only a “parents of Asperger’s” kids group that was active but pretty small. It finally decided to disband and join in with the local parents of handicapped kids group. I think that was a good idea.
As far as Sacramento there is only “FEAT” Families for Early Autism Treatment, which by definition is for parents of preschoolers.
It’s ridiculous. That’s all there is in Sacramento, and it’s pretty big. They don’t want ASD adults anywhere near them, unless you count Lenny Schafer. It’s Lenny Schafer’s territory and they all push, push, push ABA and DAN! like you’re evil if you don’t do both. There are no “floortime” therapists in Sacramento. It’s ABA, ABA, ABA. Not that “floortime” is that great, but there are no real alternatives for parents to heavy duty stimulus/response training and the DAN! cult here.
Camille,
I understand yours and Laurentius Rex’s points. Obviously we have all had a lot of tsuris from parent orgs that have not listened to autistics!!! But this is not what I am talking about. I am talking about parents of kids in schools who need to get the school systems to think of programs that fit their children’s unique needs. We are NOT about any particular approach; we are about uniting and getting the administrations to listen to parents. Some want ABA, some want RDI, some want Floortime. I just want a good job coaching program within my town for Natty…
Forty years ago the NAS was set up as a parents organisation,
Now jump forward about twenty years and some, when I first became involved in disability campaigning.
Most of the organisations then were parent organisations, CP. Spina Bifida, Muscular Dystrophy etc.
Around that time there were people with those conditions who were demanding “a piece of the action” too.
In the intervening time, those parents who set up the NAS, those parents were running the disability organisations saw that there children had grown up. Yes generations have grown up and one thing is apparant we all, if we live a natural span, spend far more of out years as adults than as children.
Some parents never realise that, and are only interested in here and now issues of immediate concern. We who have been autistic for longer than these parents have been dealing with an autistic child can see the bigger picture.
It is parents who need us as allies I think and ought to be appreciating that.
I think we need both – advocates for children and alliance with adults. It doesn’t have to be one or the other, does it?
I, for one, would love help understanding what my child might need from someone who has been through a similiar experience. Sometimes I feel that I know what I am doing and others I have no clue – do I push harder? back off? let things be????