Archives for category: Autism
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Parent as student

March 12, 10 //
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I have had a lot of teachers throughout my life. Some taught me because they were paid to, some because they were supposed to, and some because they wanted to. Many of the best teachers in my life, though, had no idea that they were teaching me. (Or, perhaps more accurately, that I was learning from them.)

At the top of this list of unintentional teachers are kids, especially my own.

When the relationship between parents and their kids is discussed, “parent as teacher” is a common interpretation. There is no doubt that parents need to teach their children. But if we only see ouselves as teachers, whether it is because we are supposed to or because we really want to, we are missing out on some of the greatest learning opportunities we will ever be given the chance to experience.

This is especially true if your kids are different from you, or different from what you expected them to be. For example, if you are a “jock” and your kid a “geek” ( or vice versa). Or your kid is disabled and you’re not.

If you are a parent, take the time to learn from your kids. You’ll be amazed at what they can teach you.

What’s in a label? (take 2)

February 24, 10 //
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In my last posting, I wrote the following about the consolidation of Asperger’s Disorder and PDD-NOS into a single classification for Autism Spectrum Disorder:

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum.

This generated some interesting conversations that have helped me as I figure out what I think.

Of course, the problem I had with combining these separate diagnoses into a single one – that people would tend to see all autistics as “the same” – also exists with the more “specific” diagnoses. It’s just that now you’ve got several variations on the theme: all Asperger’s is the same, all PDD-NOS is the same, all Autism is the same.

Thinking about all this reminded me of the expression “If you’ve met one person with autism, you’ve met one person with autism.” We are making a lot of process in getting this message out, and identifying autism as a spectrum could help with this even more.

What’s in a label? Autism, Asperger’s, and the DSM V

February 19, 10 //
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Several years ago, I wrote a two part article on my thoughts about whether autism should remain in the DSM. Here’s what I came up with:

For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world.

The current draft of the DSM V, available for review and comment, still includes autism – now referred to as Autism Spectrum Disorder (instead of  Autistic Disorder). However, the DSM V proposal recommends that Asperger’s Disorder and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) “be subsumed into an existing disorder: Autistic Disorder (Autism Spectrum Disorder)“.

As you might imagine, there has been a lot of discussion about this. I’m not really sure what I think of this change yet, there are so many aspects to consider:

  • What is the impact to those already diagnosed with Asperger’s or PDD-NOS? In terms of available services? In terms of individual perceptions of self? Will they have to be rediagnosed, or will they be “grandfathered” in to an Autistic Spectrum Disorder?
  • What is the impact to future diagnoses? Will there be fewer children diagnosed autistic, or more? Will a child who would have been diagnosed with Asperger’s or PDD-NOS be diagnosed as autistic? How will this affect funding of special education programs?
  • Will parents accept a diagnoses of “autistic” for kids they believe are “too high functioning” to be autistic but whom they believe need the services that come with the diagnosis?
  • How will special education programs be impacted? Will they be able to avoid a “one-size-fits-all” approach to treating “autism” as if it is a singular thing, or will they remain flexible enough to develop education plans based on the needs of individuals?

And more, many more.

It is the last of my bullets above that most concerns me. Anyone who is involved in special education – as a parent, student, teacher, or administrator – knows that even now Individual Education Plans (IEP) are typically anything but individual. (There are, of course, exceptions, but you will find many many more horror stories than success stories about IEPs.)

I agree with Roy Richard Grinker when he writes that “the stigma of autism is fading”, though I’m not sure I agree with him that this is happening “fast”. I also agree that across the three current diagnoses there is a lot of commonality, both in terms of symptoms and “treatment”.  But there are differences, and I think that having the three separate diagnoses emphasizes the “spectrum” – or, as Grinker calls it, a “continuum”.

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum. Only when you see a rainbow of light coming out of a prism can you see that white light includes all of those colors, and that each of those colors has its own unique properties. We still need this prism effect with autism.

We are making progress in understanding, but we still have a long way to go. So for that reason, I’m leaning toward the opinion that Asperger’s and PDD-NOS should stay in the DSM. At least for now.

Rude is in the eye of the beholder

February 12, 10 //
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Quite a while back, Scott (aka @nametagscott) tweeted the following words of wisdom: It’s not the traffic that stresses you out, it is your reaction to traffic that stresses you out. I’d like to modify that just a bit and say:

It’s not rudeness of others that stresses you out, it is your reaction to what you think is rudeness that stresses you out.

Are you a presenter who gets stressed out – or pissed off – when you see people paying more attention to their electronic gadgets than to what you are saying?  Olivia Mitchell provides some insight to this in her article How to Handle a Texting Audience with an answer to the question, “Is it rude?”

Rude is in the mind of the beholder. Rude to you, not rude to them. To label a behavior as rude is to make a negative judgement about it, and that judgement will seep through in the way that you come across.

Your audience are adults. If their behavior is not distracting or annoying other people in the audience it’s up to them whether they pay attention or not, and how they pay attention.

Her advice: “If you want their attention, be more interesting than their cellphones.” It’s you, not them, that makes the difference.

As the parent of an autistic son, I’ve found myself in more than one situation where someone has become stressed about my son’s “rude” behavior. Of course, he’s not being rude, he’s just being himself. But people expect certain things from other people, and when they don’t get it they get upset.

In his new book Linchpin, Seth Godin addresses the question in a couple of short sections. In the one titled Teaching Fire a Lesson, Seth writes:

Fire is hot. That’s what it does. If you get burned by fire, you can be annoyed at yourself, but being angry at the fire doesn’t do you much good. And trying to teach the fire a lesson so it won’t be hot next time is certainly not time well spent.

Our inclination is to give fire a pass, because it’s not human. But human beings are similar, in that they’re not going to change any time soon either.

And yet, many (most?) people in organizations handle their interactions as though they are in charge of teaching people a lesson. We make policies and are vindictive and focus on the past because we worry that if we don’t, someone will get away with it.

It doesn’t do any good to get mad at fire, and it’s not any more useful to get mad at autistics, or anyone, who annoys you. As Seth writes in the section Annoyed at Intent:

If you accept that human beings are difficult to change, and embrace (rather than curse) the uniqueness that everyone brings to the table, you’ll navigate the world with more bliss and effectiveness. And make better decisions, too.

I have been as guilty of all of these things as anyone else through the years, and I’m working to improve (though I still get way too annoyed in traffic). Whenever I start to find myself getting annoyed, I take a deep breath and step back from the situation for just a moment to figure out what it is that is really bothering me.

Try it. You’ll be amazed at how much it helps.

Different, not less (or broken)

February 5, 10 //
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Tomorrow night HBO will premier the film Temple Grandin:

Starring Claire Danes, Julia Ormond, Catherine O’Hara, and David Strathairn Temple Grandin paints a picture of a young woman’s perseverance and determination while struggling with the isolating challenges of autism at a time when it was still quite unknown.

Temple Grandin and Claire Danes
The film is based on two of Grandin’s books about autism, Emergence: Labeled Autistic (written with Margaret Scariano) and Thinking in Pictures, Expanded Edition: My Life with Autism. Given the typical Hollywood treatment of autism (Rain Man, anyone), I had my doubts – fears, maybe – about how this story would be told. A review of the film in yesterday’s The Atlantic has helped to alleviate those concerns:

Stereotypical characters with autism are a convenient and powerful device for convincing neurotypical people to mend their ways, or for demonstrating the saintliness of the people who put up with them.  These cinematic conceits make HBO’s Temple Grandin, a biopic of the acclaimed animal scientist and autism advocate (to premier on HBO on February 6 at 8 p.m.), particularly remarkable.  From the life of one of the best-known individuals with an autism spectrum disorder, director Mick Jackson has managed to make an utterly original movie about autism, simply by allowing Grandin, portrayed in a stunning performance by Claire Danes, to be the center of her own story.

If you are at all involved in the “autism community”, I know that you will probably be checking out this film. If you are not involved with, or even familiar with, autism, I encourage you to watch this film with an open mind. It may just help you understand the sentiment that those with autism are different, but not less, and are most definitely not broken.

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