Autism isn’t the only “A” word

Posted: April 19th, 2009 under disability issues, life on the spectrum, opinion, politics.
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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 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.


  • Comment by AnnMCN — April 19, 2009 @ 7:05 pm


    There is a stunning amount of ignorance and prejudice even amongst “trained” educators. I worked for several months as a parapro in a self-contained Asperger’s class with a teacher who discussed the students in front of them and each other, saying that they couldn’t feel emotion and it wouldn’t bother them. Many of them were in college prep classes, and they could all read well.

  • Comment by Elizabeth — April 19, 2009 @ 7:40 pm


    *Headdesk* I dare not say more.

  • Comment by Confutus — April 24, 2009 @ 5:29 pm


    I visited the FAAAS web site and posted my response of some of the things I saw there on my own blog,
    From what I’ve read on web sites, there are more than one or two so-called experts on Autism and Asperger’s Syndrome who are as clueless as your fictional Dr. Fornum about the internal realities of those they pontificate about.

  • Comment by Jim Hite — April 30, 2009 @ 3:38 pm


    I just finished reading Speed of Dark and was so moved I wanted to check out any webiste’s on it. I’d read several other Moon sci-fi, but this isn’t sci-fi really – it’s a story of love with bit of sci-fi tacked on for the plot devices.

    As far as this blog bit goes, it reminds me of the many times in life when people exceed the limits others would place on them. This fireman being like Danny or Lt Stacy. Many people will do good and be heroes if circumstances combine right. Cops and firemen seem to get more chances, but my wife as a teacher has made some kids feel extra special.

    As far as that bit about moms becoming experts on their kids, that happens even with the non-autistic. After our second kid died from heart arrhythmia, it’s amazing what we learned about QT segment abnormalities. But knowing your kid went to school in 4th grade with his underwear on the outside because he was being Quailman is something you know because you spent the time to be an expert on Karl. I miss my kids now they’re all out on their own. Texting isn’t the same as watch “Doug” with them.

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