Finding Solutions for the non “Jack and Kirstens” in the autism world

5 Jan

Many, many people are lauding the NYT for their article December 26th entitled  Navigating Love and Autism about two adults with Aspergers  entering into a relationship. It is a great story but as Mark Olson points out on the Autism Speaks blog this story leaves out a huge part of the autism population. The part that his daughter and mine are a part of.

After reading Mark’s article I am reminded how easily the public is swayed by the way the media chooses to portray autism. The majority of stories do focus on individuals with Aspergers and high functioning autism and much of the legislation in our country is geared toward that population as a result. And I still run across the occasionally befuddled person who doesn’t  believe The Princess has autism and instead is mentally retarded because of the way autism is perceived in pop culture as either savants like Rain Man (no my daughter doesn’t count cards) or individuals who can be written off as “quirky” or in the case of a disastrous episode of Glee, entitled people with absolutely no accountability for their actions.

The trickle down effect of this is that, as a society, we cater to that segment of the autism population when it comes to choices and programs. The idea of “least restrictive environment” for education was created to protect these children while it sometimes forces parents of children who are lower functioning into situations they don’t want to be in, inadvertently. As Olson points out, it also makes it more difficult for adults who are non-verbal to find suitable housing or job opportunities. The crisis here is that one segment of the spectrum is getting unprecedented coverage and assistance while the rest is being virtually ignored.

Closer to home I have seen this first hand. A group in my state has opened up a school for children with Asperger’s Syndrome. The idea they had was to tap the market for Aspies and then branch out to all on the spectrum. The response, however, has been so overwhelming from the Aspie population that, at this time, they have no timeline as to when the school may be opened up to others on the spectrum. They are expanding across the state (these are private schools, they initially wanted to be non-profit charters but the restrictions and inability to expand potentially precluded that option) and are supposed to be opening a school in my area in the next couple of years. This will make a fourth option for children with Aspergers (fifth if you include home-schooling as an option) while a child like mine has only one or two.

So, what do we do? We make our own solutions. Parents come together and co-op for schooling. Friends of mine are helping to create a community of individuals who are not as high functioning being able to live independently. We tell our stories to local media and hope it gets picked up nationally or at least regionally. We write blogs. We create the services we need when the government and advocacy organizations cannot or will not. We educate friends, family, fellow church members, neighbors and strangers. Because there are solutions to be found out there. Even when our kids aren’t the “Jack and Kirstens” of the autism world.

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