|Autism: Not the Only "A" Word
||[Apr. 19th, 2009|06:26 pm]
For parents, a child's "pathology" or diagnosis may sometimes seem to encompass the whole world. You're in the trenches, dealing with it every day--the child's behaviors, the child's struggles, the reaction of those around you to the child and the child's struggles, and your struggles, the therapy appointments, the judgments so many people make about you as a parent and your child as a child. Anyone in any of life's "trenches" (whether it's a health or economic or social trench) begins to feel that the sides of the trench and the shells raining down from above define reality.
But that's not the case.
April is Autism Month. What I want to say about Autism Month is that autism (or Asperger's) isn't the only "A" word, nor is it the most important "A" word. Attitude is another. Whether a child carries an autism-spectrum diagnosis or not, the most important A word in that child's life--and in that family's life--is Attitude. If a family is convinced that having an autistic child is a terrible, horrible, unfair burden on their otherwise perfect life...it will be. If I family is convinced that having an autistic child is a challenge they will meet--a challenge that offers a chance to learn and grow...it will be. If family is convinced that every child, whatever the diagnosis, is a real human being deserving of respect...that child will be.
This is not to say the family of an autistic child can ignore the problems that autism creates--for the child and for the family. Or that it's not (often but not always) more work for the child and for the family. It is. But the kind of whiny self-pity and downright dishonesty shown by some families (and displayed publicly in, for instance, Families of Adults Affected by Asperger's Syndrome, or FAAAS) displays an attitude that creates more problems, not only for that family and child, but for everyone with a family member on the spectrum.
On the FAAAS website, this organization states it is advocating for parents and siblings of those with Asperger's (though it is soon clear they mean anyone on the spectrum, as shown in their link to this article about autistic girls); it promotes the idea that prolonged contact with children or adults on the spectrum is inevitably painful and harmful to family members and friends, via something they have called "The Cassandra Syndrome." Links to articles like this one suggest that a parent with Asperger's Syndrome is likely to be a bad parent, rigid and unloving, or that all the "fault" in a difficult relationship lies with the person on the spectrum, as here, and the person with no diagnosis has no responsibility for whatever difficulty exists. It is clear that some people are looking for a diagnosis to stick on a spouse or child or other person they can't get along with, and thus want to believe that these people are undiagnosed Asperger's.
Every bad Attitude/Opinion/Belief in the world can dredge up someone with a doctoral degree to bolster the error...and "blame the other guy" is no exception. But in this instance, the genuine and undeniable difficulties of managing life with someone on the spectrum have been coddled into a wicked combination of self-pity and political activism. Generalized negative statements about autism, Asperger's, and everyone on the syndrome has expanded into attempts to interfere with the lives and legal rights of those with those diagnoses. From an attitude of self-pity, these people have progressed to an attitude of hostility and blame.
Autism Month is supposed to focus attention on Autism Spectrum conditions so the public can be educated...but if that education is provided by those who are hostile to autists and Aspies...it can generate social hostility and legal action that is not justified on the basis of fact. Opportunities for any group close down if that group is perceived as particularly difficult, violent, incapable of forming healthy relationships, incapable of managing affairs, etc. Negative advocacy--lobbying against people on the autism spectrum--means they are perceived negatively by others, including in legal matters. All disabled people have fought to retain their legal rights--their right to be heard in court, to have their testimony taken, not discounted on the basis of their disability. They have fought to retain (or regain) the right to marry, live independently, travel, hold jobs, have children and raise them. That includes people on the spectrum. It is a giant step backward--no, it is a giant LEAP backward--for anyone to advocate restricting opportunities by diagnosis.
Do families need support and understanding? Yes, but not at the cost of opportunities for their member on the spectrum. This is not, never was, and should never be, an either-or argument that pits families and persons on the autism spectrum against one another. It is possible to support families in the trenches without denigrating the person with the diagnosis. FAAAS, with its emphasis on the greater suffering of the families, and its ignoring of the suffering of the person with autism or Asperger's, has taken that giant leap backwards into the era where anyone with a disability was seen purely as a burden, never as an opportunity for growth.
And yes, if you didn't already know, our son is a 25 yo autistic man from whom we have learned a lot as we all faced the challenges together. Our lives would have been poorer without him.