Archives for posts with tag: Asperger’s Syndrome

What’s in a label? (take 2)

February 24, 10 //

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 //

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 //

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.

Building on our strengths

December 19, 08 //

All too often I see people focusing on their own personal weaknesses or shortcomings. Worse still, many parents do the same thing with their kids and many employers with their employees. I’ve often wondered why this is, why the focus on negativity when we, and the people around us, all have such incredible strengths to appreciate and use.

This focus on the negative is the most blatant when it comes to working with those with disabilities. As the father of an autistic son, I’ve seen this first hand. In a recent interview with WNET, Temple Grandin has the following to say on the matter:

Grandin is good at thinking in photorealistic pictures, but she is unable to grasp simple concepts such as numbers. Grandin, who flunked out of algebra in school, said teachers approach her all the time seeking advice: “How do I get the pictures out of my student’s head?” or “I have a student who is board stiff in algebra, but great in geometry–what should I do?” Grandin said a creative teacher would give the student geometry to practice after algebra class.

People with autism have uneven skills, and it is important to build up their strengths, according to Grandin. “It’s okay for kids to have obsessions. If all a kid wants to do is draw trains, then let the kid draw trains. Show the kid how to draw a train station.” To Grandin’s way of thinking, a fascination with trains may reveal a talent for drawing or graphic design, or lead to a job connected with the railroad industry.

“Parents and teachers should also be asking the question, “What are they going to do when they grow up?” It is a shame for a kid who has the potential to be a computer programmer to end up washing dishes or working at a convenience store. Grandin said what is so sad is that these children can contribute to society–just as she has–but that some are made to feel that their contributions are not welcomed or appreciated and therefore become totally dependent on family or social services for support.

It’s OK for kids to have obsessions? Not something you hear every day. But consider this story – paraphrased from a story I heard on the radio – about a boy and his obsession with snakes (which I originally posted here):

A boy with Asperger’s Syndrome is focused on snakes. He knows nearly everything there is to know about snakes, and can bring snakes into just about any story or subject. If he can’t make it about snakes, he doesn’t care about it. As it turned out, as a cumulative school project this boy had to prepare a report about the Battle of Gettysburg. The purpose of the project was to teach research and presentation skills. You guessed it – no snakes, the boy didn’t care and wasn’t doing anything on the project.

Until, that is, the adults in the bunch came up with the idea, “What if we let him do his report on The Snakes at the Battle of Gettysburg?” To make a long story short, this got the boy’s attention and he dove right in. To do the project, he had to learn as much or more about the battle and the geography, etc., as any other kid. His project was so good, and so unique, that he was asked to present his project to the entire school. Everyone wanted to hear the presentation about the snakes at the Battle of Gettysburg, and everyone thought it was great.

The kicker here is this: Before this presentation, everyone avoided this boy because all he wanted to talk about was snakes.

Some parting words on the subject of passion and obsession from Luke Jackson, written several years ago in his book Freaks, Geeks, and Asperger’s Syndrome when he was 13 years old.

Q: When is an obsession not an obsession?
A: When it is about football.

How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Brett's Waste Blog by G. Brett Miller is licensed under a Creative Commons Attribution-Share Alike 3.0 United States License. Based on a work at blog.gbrettmiller.com.

What’s in a label? (take 2)

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

Rude is in the eye of the beholder

Building on our strengths

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Random wisdom

What’s in a label? (take 2)

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

Rude is in the eye of the beholder

Building on our strengths

Autism Twitter Day

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Meta

Random wisdom