The Unspoken Prejudice

4 Mar

This weekend I found out about an open house for a new autism private school in our area which was great until I read that it is only for children with High Functioning Autism (HFA) and Aspergers.

This is the second such school established in our relatively small area for kids with HFA/Aspergers. All of the programs for after-school and day camp in our area are only for HFA/Aspergers. We had an unfortunate incident last year where we enrolled the princess in a day camp program for the entire summer only to have them tell us after the first week they were not equipt to deal with her level of need. They were our only option. One week. We can’t  help your kid. We’re trained to work with kids with autism.

The unspoken prejudice that exists in the majority of special education and programs designed for children/adults with autism is that they exclusively cater to one targeted area of the autism spectrum: HFA/Aspergers. We have been down this road in the school system and with services.  They just do not exist in the numbers they need to for children like mine: who have large sensory needs, who need help with life-skills, who cannot speak or communicate their needs, who need extra help with almost everything.

It becomes frustrating to realize that with all the funding, all the research and all the “new programs” that your child is now being shut out not only from the NT world, but is now marginalized in the world of autism. It is the same kind of pain one goes through knowing their child will not make the typical milestones, but more profound because it feels as though in a world where your child should be accepted and understood people are consciously turning their backs.

When my husband was in school to become a teacher, there were several men and women going for special education and almost all expressed an interest in autism but he felt their impression of autism was unfairly skewed. “They think they will be dealing with savants or with geniuses who are just misunderstood in society,” I remember him saying. “No one wants to to be the one changing diapers or wiping drool.”

In our experience as parents, we’ve very much found that to be the truth. People who claim to have worked extensively with children with autism recoil at our daughter’s interest in smelling people and her shrieks. And I realize, we’re not all called to be Mother Teresa and embracing the least among us, but those going into special education need to check themselves seriously and realize it’s not all dyslexics or kids with just a few social quirks.

Our society needs a reality check too. Not only are the numbers going up for autism, the numbers of individuals who are profoundly autistic are going up. The number of kids who have autism AND ____________ is going up (for example, Autism and sensory processing disorder, global delays, schizophrenia, depression, epilepsy etc). We cannot continue to exclusively cater to one area of the spectrum.

One of my dreams is to open a school for children who would be served less than 50% of the school day mainstreamed. The goal would be to allow them to re-enter the school system when they get to a point where 50% or greater of the school day would be spent with typically developing peers. But, of course, some children might never reach that point, and that’s okay too. Right now in our area, if your child is considering low-functioning, the only options are home schooling or public school. For any variety of reasons home schooling is not an option for many families, so if the public school realm doesn’t work out, they are at a significant disadvantage. And for working parents, it is extremely difficult to find adequate child care for those who are low functioning. And with budget cuts, getting a worker for a child is next to impossible (we’ve never had a worker for “the princess” because of the lack of state funding for the program).

Unfortunately, this unspoken prejudice, this preference for working with high functioning children will never improve until it is openly acknowledged and since people don’t like talking about inconvenient and uncomfortable truths, it will be quite some time coming.

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