Whose Planet Is It Anyway?

Saturday, August 05, 2006

The Autism Spectrum and the Great Glass Elevator

Some folks have the idea that an autistic person moves up the spectrum when he or she speaks more fluently, displays less autistic mannerisms, acquires a new skill, develops more social relationships, or in the case of an autistic adult, finds a job or gets married. This linear view of autistic existence seems to envision a process similar to the classic children's story by Roald Dahl, in which success is achieved by smashing through the ceiling of autism in the great glass elevator of therapy (of one sort or another), and the occupant of the elevator, having now become socially acceptable, is miraculously transported to the wondrous heavens of normality.

To quote a crotchety Texas judge by the name of Tom Gray: "There are so many problems (with this opinion) that I do not know where to begin; so I will start where I first knew there was a problem and proceed with a stream of consciousness as new problems emerged."

I'll start with a question: Did you ever try to follow a rainbow, when you were a child, to find out if it really had a pot of gold at the end? You ran across the wet grass, and when you reached the place where you thought the end of the rainbow ought to be, all you could see was a faint shimmer of color in the tiny drops of water at the tips of the grass blades. In the same way, the autism spectrum contains all the bright colors and vibrant hues of our human existence, but it has no end, no clear line of demarcation from the rest of the world.

All children develop new skills and learn more about their social environment as they grow older. (Adults also continue to learn, if they maintain an open mind and a willingness to explore new viewpoints and experiences.) This doesn't make a child or adult less autistic, just better educated and more mature.

And contrary to the another-brick-in-the-wall mindset of our cookie cutter educational system, we don't all have to learn exactly the same things and develop in exactly the same way. Just because a child does not begin speaking at the age listed on a developmental chart, it doesn't mean that he or she will never be able to communicate, and it has no relevance whatsoever to other abilities or to intelligence in general.

The same can be said of harmless behavioral differences such as rocking and hand-flapping. They have no bearing on competence or intelligence, and the only reason why they are seen as undesirable is social prejudice. When an autistic adult finds a job or gets married, that doesn't mean he is any higher on the autism spectrum; rather, it means those around him are higher on the tolerance spectrum.

One more stream-of-consciousness problem: When hierarchical language such as "moving up" is used in connection with autism, it has a patronizing air of social superiority to it, similar to the attitude of wealthy white folks who praise a successful non-white person for becoming educated and moving up out of the ghetto. Yes, education and financial success and social integration are all good things—but the ghetto never should have existed in the first place.

The autistic spectrum is not linear, not an elevator, no more of a constraint than any other way of being. It is a rich and complex part of the bright, beautiful, multidimensional kaleidoscope of human diversity.

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  • Said about Ben by a speech therapist after meeting him and seeing his "skills."

    "He's going places."

    I remember feeling happyish at the compliment but then thinking, "Where is everyone else going?"

    Or then there was the tag line to part five of the CNN series Inside Autism, called "Autism Success Stories."

    What about the other stories? Are they Autism Failure Stories because those "other" kids don't resemble the star-child featured on the Success Story installment of the series?

    As far as trying to find the end of a rainbow: Yes, many times...while driving in my car.

    By Blogger Lisa Jean Collins, at 2:44 PM  

  • Great post.

    However, I actually do think the autistic spectrum is a lot like Willy Wonka's great glass elevator:

    "This isn't just an ordinary up-and-down elevator!" announced Mr. Wonka proudly. "This elevator can go sideways and longways and slantways and any other way you can think of!"

    (p. 119 Charlie and the Chocolate Factory,)

    By Anonymous Tera, at 4:42 PM  

  • Very nice. I've been thinking along similar lines lately -- it makes me cringe when people talk about wanting to move their kids "off the spectrum" or "up the spectrum". I think they're probably talking about a different spectrum than the one I am -- theirs is a constellation of unwanted "behaviors", whereas mine is a range of sensory variations, perceptual styles, and cognitive proclivities that certainly shape a person's life but by no means make it something less than a life.

    I think that a lot of people who talk about moving people "up the spectrum" are doing so innocently (or ignorantly, depending on how harsh you want to be) -- that is, they see the negative things as "autism" and therefore eliminating anything that looks "autistic" means eliminating negativity.

    I would guess that a considerable fraction of the debates I see on the blogs I read are based on the fact that one party is using the word "autistic" to describe how they (or someone they know) perceives, learns, and senses their environment and the other party is using the word "autistic" to describe a state in which a person behaves in certain ways. This is one reason why autistic adults need to keep writing about life from their (our) perspective -- I'd consider it great progress if more people got it into their heads that yes, we really are seeing the world differently and that we learn differently, and no, eliminating outward "behaviors" doesn't mean we're turning into NTs or somehow suddenly perceiving the world more "normally".

    By Blogger Zilari, at 5:02 PM  

  • I like the image of the Möbius strip.

    By Blogger Kristina Chew, at 8:12 PM  

  • This relates also to the word "improvement". It's true that it's good for autistic kids to learn new skills, as it is for everyone. But when an NT child learns skills, you'll seldom hear people say that the child has "improved".

    By Blogger Joseph, at 12:03 PM  

  • Good grief. I've never heard the term "moving up the spectrum" before. How...bizarre.

    "When an autistic adult finds a job or gets married, that doesn't mean he is any higher on the autism spectrum; rather, it means those around him are higher on the tolerance spectrum."

    I can't tell you how much I loved this line! Brilliant!

    By Blogger Attila The Mom, at 4:28 PM  

  • This is I believe very closely related to the misleading high/ low functioning dichotomy that Amanda has railed against in the past. As she notes, autistics can be 'low-functioning' in some areas and 'high-functioning' in others. It does show how wrong, in terms of basic *science*, the conventional view on autism is.

    By Blogger Redaspie, at 5:09 PM  

  • I think there is another reason some parents want their child's diagnosis changed to AS from Autism or from Autism to PDD. A lot of this has to do with the way school districts (and other agencies, such as the Intermediate Units) have created different classrooms on the basis of arbitrary measures of functioning.

    For instance, in the Early Intervention program in my area, there is a "developmental delay" class, which is basically a mish-mosh of delays, a larger class size, and a "less restrictive environment." Just down the hall there is the PDD/autistic support class, which is much smaller and includes teaching methods such as ABA, which not every parent may want.

    My son was just given the dx of PDD-NOS and ADHD. He could have gone into either of those two classrooms, but the decision was made mutually (me, the director of the program, the OT) to put him in the developmentally delayed class instead of the autistic support class. First, I didn't want him getting ABA, and I told the director I am against that methodology (after I asked her and she told me that they use a variety of methods, including ABA). Second, I wanted to put him in a class that might most resemble regular kindergarten the following year. Third, he had been in a mainstream preschool the previous year with a 1:1 aide.

    So, on the surface by asking for the developmental delay class, it could look like an example of a parent wanting to move my child "up," but sometimes there are more complex reasons. I've found that teachers tend to treat children differently when they are not labeled "autistic" and put in "autistic support."

    They tend to expect more from them, and they tend not to treat them like they are inanimate stumps in the room.

    By Blogger Lisa Jean Collins, at 11:12 AM  

  • I would say that rather than there being a tolerance spectrum that non-autistic people fall under, there is probably more like a full-of-crap spectrum that everyone falls under, where you are more or less able to accept that not everyone is you or your randomly generated ideal person-- or that ideal qualities can be found in unexpected places, and that in fact, that's where you find them.

    I mean, tolerance! Who am I, to "tolerate" someone? Like, I tolerate my dad, who is slightly obnoxious, but a whole group of people? If I am just tolerating a whole group of people, I still have a wicked big problem.

    I think people who have an autistic kid should be thrilled. Not everyone gets to have an autistic kid.

    By Blogger Tay Arrow Sherman, at 12:44 AM  

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