Tuesday, April 13, 2010

Embracing Autism vs. Finding a Cure, and who the heck is Ari Ne'eman...

Right now there are two groups advocating for autistics, one is committed to doing all they can to find a cure (Autism Speaks, Age of Autism) the other is fighting for neurodiversity (Autistic Self-Advocacy Network). Those fighting for neurodiversity don't see autism as tragic, but as another way of being and think that those focused on a cure are rabid "curebies" who don't appreciate autistic people. Those focused on finding a cure feel the other group is crazy and counter productive.

This has all come to a head since recently Air Ne’eman, the founder of the Autistic Self-Advocacy Network, has been nominated to the National Council on Disability. Ten years ago he would have been confirmed no problem, now there is an anonymous hold on his confirmation.

Now I am being asked how I feel about Ari.

Let me begin by saying our family has done everything in our power to help my son. We've tried too many approaches to count, some worked and some were a waste of time, money and energy. My son is doing incredibly well, he no longer exhibits self injurious behavior, he is verbal, high functioning, and probably would be considered to have Aspergers at this point. One day he may be able to live on his own we don't know yet. This year he began High School fully mainstreamed without an aid. Meanwhile, last year my dear friend's son went into a group home for the safety of herself and her son.

The therapies that my friends and I fought for and lost our homes, marriages and sanity for are now considered routine, safe and effective. There is now irrefutable evidence that shows kids on the spectrum can learn if given the right tools and mode of instruction. (G did not turn into a robot after participating in ABA...) Are all kids getting all of the services they need at this point? No. Does more need to be done? Absolutely! Do we need to research why the incidences of autism are increasing, of course we do.

As we keep looking for a cause, and fighting for appropriate interventions, let's also celebrate who are kids are becoming and support them in any way possible. My son is not neurotypical and most likely never will be. I'm looking for understanding. I love my son, I love his personality, and I love the person he is becoming. He is a visual thinker who has a fascination with flight, air flow, and wing design. He's going to need extra help in life, but my desire, my passionate desire is that people will embrace him as he is, and that he will feel proud of himself.

With that said, I also say lets support the autistic adults who are now speaking for themselves. Ari Ne’eman will not stop funding for a cure or early intervention in his new position. Let’s remember the National Council on Disability, purpose is to “promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” By opposing Ari we are blocking a passionate advocate who will fight for our children’s future rights and opportunities.

How do I feel about Ari Ne’eman? I support him.

1 comment:

farmwifetwo said...

I don't. Why?? B/c his "friends" think children like my youngest should "get over" the fact that one day they will live at the mercy of the system.

That is their lot... they shouldn't want more than that... and that those with ASD that have jobs, families etc should speak for them. I'm too stupid to do so.

That is why.