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Autism: Not the Only "A" Word [Apr. 19th, 2009|06:26 pm]
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[Current Mood |angry]

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.


From: joycemocha
2009-04-20 12:56 am (UTC)
Applauds loudly.

Well said!
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[User Picture]From: e_moon60
2009-04-20 01:06 am (UTC)
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[User Picture]From: morvashepley
2009-04-20 01:35 am (UTC)
Fantastic post. I wouldn't mind knowing more about how to treat people I meet who have Asperger's. For instance, when helping out in the literacy program at school, if a child's attention wanders I often direct them back to their book by tapping their shoulder just gently, just enough to bring their thoughts back to here and now, and then indicate the book, drawing their eyes back to it. But maybe Asperger's don't like being touched. Teachers get training, and some Asperger's get a special assistant (depending on funding availablity) but us volunteers just have to make our best guess.

On the upside, recently a Rock'nRoll quiz program had a special anniversary do. One of the contestants was Asperger's/autistic, about which no explanation or fuss was made. When another contestant wondered about all the correct answers pouring out so rapidly, the host simply said, "This young man spends a lot of time in front of the computer, and has a good memory." This did a lot to normalise his condition for a huge audience.


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[User Picture]From: e_moon60
2009-04-20 02:25 am (UTC)
Nearly all on the spectrum have sensory processing differences--they experience sensory input differently than the average person. Touch, taste, smell, temperature, pressure, sight, sound. The degree of sensory difference, and the range (one or two senses v. every sense) varies from individual to individual.

There's a new online course (I haven't checked it out, but just got word of it through a local autism society) for those working with children with autism or Aspgerger's Syndrome. It's supposed to be free, online, and it might give you some insights.


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[User Picture]From: morvashepley
2009-04-20 03:57 am (UTC)
Thanks. I'll check it out and maybe I can pass it along.

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[User Picture]From: blueeowyn
2009-04-20 03:50 pm (UTC)
I love what you say about attitude. My co-worker has an Aspie teenager and I can see how she is working on having the right attitude. The teen is highly functioning and while she isn't talkative with people in general, she loves doing theatre. That is currently her main niche (and the parents are very supportive). I'm going to send her a quote from your post and a link to it.
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[User Picture]From: xandg4ever
2009-04-20 05:44 pm (UTC)
I think your thoughts on this are very well said. I have a 5 yo who was thought to be on the spectrum and was treated as a child with a "disability" instead of a child with potential. We now know he is not autistic but does have many of the issues/stressors/delays that an autistic child may have. some have treated him differently now and some strangers give us looks, like why is a 5 yo acting like a 3 yo with a tantrum. I think most people are unfamiliar with it and are afraid so they behave badly. I try not to get bothered by it when well meaning people in the mall try to tell me how to discipline him while he is in a fit. People don't understand developmental, speech and social delay. But no matter the diagnosis, kids that are affected should not be treated with any less kindness, respect, caring and understanding. And organizations that perpetuate the stereotypes should be ashamed of themselves.
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From: (Anonymous)
2009-04-20 10:49 pm (UTC)
I went over to the site to see what it said for myself. I couldn't read half the articles (my browser doesn't want to read PDF files for some obscure reason), but the "we're miserable because we have to live with their kind" attitude on the front page didn't impress me one little bit. I also didn't see any recognition that Asperger's Syndrome has a bright side, too.

I was diagnosed with Asperger's after I hit age 45, and I can testify that growing up in a family that treats the symptoms as moral failings that can be punished out of existence is no picnic, either. There are some things that I couldn't change no matter how I tried, and there are others I wouldn't change if I could.

I used to hear chapter and verse on how I made everyone else's life hard, so at least that part was familiar. From the Asperger's side, I'd say that oblivious, or sometimes helpless, sound more accurate than than cold or insensitive when it comes to other people's feelings. The difference may not be apparent from the outside looking in.

But a little recognition of the positive qualities that also typically go along with Asperger's might do a world of good, both to those who don't quite understand a society which doesn't quite understand them, and those poor unfortunates who are sentenced to live with them.
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From: (Anonymous)
2009-04-22 04:06 am (UTC)
I think my tone here was a bit angry. I've posted a lengthier, and I hope better response on my own blog. http://confutussays.blogspot.com
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From: urban_homestead
2009-04-21 12:23 pm (UTC)
May I please link to this from my own journal? I know several people to whom this would be relevant.

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[User Picture]From: e_moon60
2009-04-21 01:37 pm (UTC)
Yes...but please don't use it as a stick to beat someone with. I know that must sound strange, since it was an angry post, and I would like to give people who denigrate an entire diagnosis because they're wallowing in self-pity a good smack upside the the head with a clue-by-four.

But I posted it in my LJ and not (for example) in the community "aspecialparent" because parents who are in the turmoil of getting a diagnosis don't need to be blindsided in a venue where they feel safe to vent. There is a time for grief, for raging at the unfairness...and a time to wipe the tears, roll up the sleeves, and get on with it (whatever "it" is.) I don't think it's possible to get to the working-on-it stage without going through the grief stage--and I say this having watched the effect of the clench-jawed grins of those who never admit to having any regrets whatever that their child has problems other kids don't. Denial may get you through a tough weekend with in-laws, but it's not a good working strategy for recognizing a child's needs and finding creative ways to meet them.

It's about balance, I guess I'm saying. If you think the post would help someone you know...then please do share it. But with love.
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From: urban_homestead
2009-04-21 02:01 pm (UTC)
I understand what you mean, and I can see how someone might use it that way. But that wasn't my intention at all. I have two friends who have made similar comments to those in your post about disabled loved ones (not their own children) and I think they'd enjoy reading your perspective. Thank you for allowing me to share it with them.
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[User Picture]From: violetisblue
2009-04-22 12:54 am (UTC)
I'm one of those directed here by urban_homestead (my younger brother is autistic) and all I have to say is, very well said, all of it. Thank you.
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[User Picture]From: alonglongtime
2009-04-23 10:36 pm (UTC)
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