Autism diagnostic criteria in DSM-V

There’s been a lot of buzz about the DSM-V update to the autism diagnostic criteria. (NY Times article)

The autblogs seem to oppose it, the reasons for which were not readily apparent to me, so I thought I would pull together some thoughts and opinions about the change. The first thing I noticed about the web-buzz is the rush to judgment about what will happen based on this or that study, such as the idea that they are trying to deny people services (or alternately, that they are trying to sell people more drugs).

In my analysis, as I will elaborate on below, my main conclusions are (1) It is important to get the definition right, but the new DSM-V scattered language is not a help. As currently proposed, it could cause a more random, less helpful rate of diagnosis. (2) The DSM should be less judgmental, and not define thresholds or attempt to allocate services. The allocation of services is a separate issue entirely, and should be based on the observed needs of people in their environment. And (3), the definition of autism should be based on a more structurally sound understanding, using the categories of focus, sensitivity, acculturation, and naivete. I’ve drafted completely new language for the diagnostic critiera.

Retreat center in the Sangre de Cristos

We bought some land on the East side of the Sangre de Cristo mountains, near Angel Fire. Here’s what it looks like in October:

Quick specs on the land: 100 acres, 9,200 feet above sea level, 13-18 inches of rain

Possible marketing company

I’m always in the need for marketing help, and these guys seem pretty good…

Allegory of the cave

How’s this for an astute 13 year old? My daughter was in my office and for some reason I wanted her reaction to ABA interventions (which she’s never seen). So I searched youtube for “autism ABA in action” and watched a clip that explained how autistic people have a core deficit in imitating others; people learn by imitation; therefore autistic people can’t learn blah blah. And it showed an ABA trainer clapping and saying “do this” to make a child clap.

When it was over she said one thing: “That video is like the allegory of the cave.” If you don’t know about that, it is an explanation of ignorance by Socrates.

I asked why is it like the cave? She said the adults were only seeing the shadows, and were not seeing the real child.

Things to do when I grow up

This is what I want to do when I grow up. I want to take the saying “nothing about us without us” and make it real for the autistic community, at least here where I live. But instead of waiting to be invited to someone else’s table, I want us to go ahead and solve our own problems and make our lives the way we want it for ourselves.

In particular, this means going beyond advocacy and volunteering, and into the realm of the economy. When we help each other through trade and services where we have a stake in the organizations, we are empowering ourselves in ways that no one else can do for us. In principle, money we exchange with each other helps create an autistic village economy. Non-autistics may question this model, because they may wonder how someone with a “deficit” can help someone else with the same problem. But we are all different and we don’t have the same exact problems, and also things that are problems about us for typical people are often not problems for us directly.

Theater of the Oppressed

When I’m near people who are inspired and compassionate, I become more inspired and compassionate. Loose ends get completed; I see beyond immediate setbacks and tend towards health. But when I’m near people who are vain and wandering at a great distance from their souls, I become vain and wander too. This leads me to believe that we are not made to ground ourselves to withstand this world of vanity, and that we need each other to have the strength to do it.

The winds of vanity have carried the autism world (the industry, that is) to such remote realms that I can’t find common vocabulary to even discuss it. When I’m in a classroom, and asked what we should do with an autistic child who is having a tantrum, I’m at a loss for words; I’ve lost my ground. Somewhere inside, I know that I know a good answer, but it is blocked. I suggest consoling him or giving him time alone (or whatever trite thing that comes to mind), but what I really mean is the situation is absurd: why is controlling this child so urgent in the first place? I find myself so unglued from home, and so lonely when I’m surrounded by people churning up this hurricane of “help”. I’m pretty sure that it is the energy of vanity that drives the idea that We Must Do Something. Yet I’m caught like Dorothy and as I said in a poem once, my guideposts have all blown over in a storm. When I have no ally in the sea of vanity, I make no sense; I am ineffective, disabled.

I always liked theater – the unbounded space for creativity, the games, and the way it creates equality. So I’m naturally attracted to the idea of autism theater, which is a Big New Thing (try a web search if you like). However, I was immediately lost in it, just like in the classrooms – both in reading about it and in participating in a some programs. I couldn’t identify the inspiration, direction or reason for it, other than as a form of Behavior Therapy, may god save us from that. Then I read from Augusto Boal (author of Theater of the Oppressed), how theater is the grounding for turning awareness of ones own oppression into action. In his work, theater is the initiating action that leads to action outside the theater.

The games that Boal explains (he has hundreds of them) have seeped into many other people’s repertoire of games, but they can be twisted to suit any other agenda. In the extreme, a game whose original reason for being was to connect people together to empower them to take autonomous control of their lives could be twisted into a game of controlling the behavior of a disabled class! The irony of that had been festering without my conscious awareness. Now I at least have Boal as an inspirational ally, to help me find vocabulary when I’m swept into those distant realms.

Interestingly, the person who lent me the book volunteered that he could find no connection between the concepts of Theater of the Oppressed and working with autistic actors! Privilege dulls our minds.

Getting to independence

That there are several paths from living with your parents to independence. I visualize it like a canyon and you’re on one ledge and have to jump the chasm to the other ledge. For a lot of people, they are getting support from parents now, and they might be able to visualize having a job and supporting themselves some day, but they can’t eaily see the path from here to there. For autistic young people, the problem is compounded because some of the typical assumptions about this transition may not work as well for us.

Looking across the chasm, wondering how will I ever become independent.

So, I made some pictures to represent three possible paths. The first path is to go down and climb up the other side by working jobs starting with babysitting, mowing lawns, McDonalds, and so on. You might live in a crummy apartment shared with other people and make minimum wage, but you eventually climb the ladder and build skills and a resume, and move up. That concept is shown here:

Special needs and common needs

At a week long summer camp, I observed that seven of the ten youth were often moving as a pack and bantering with each other while the other three were clearly not part of that pack. You might say they were left out (but I have a different interpretation below). Here’s a social map of it, ignoring for now the differences between the majority.

Culture shapes

Imagine a cathedral with many people in it. The space has a central region and many alcoves. Here is a depiction of culture using this analogy.

IEP Handout

The following is a handout geared towards autistic mid-school students. It contains organizing thoughts and activity ideas for them to take a leading role in their IEP.

PDF Version of IEP handout

Big ideas for people with IEPs

The law guarantees free, appropriate education to everyone, in the least restrictive environment. For 10% of students (that’s you), your parents and teachers have determined that mainstream classes are not appropriate or not flexible enough to meet your needs. IEPs are plans for how the school will follow the law so that you get an appropriate education. “General education” is the name for mainstream classes, and “special education” is the name for all the separate classes and additional services that are set up for students with IEPs.

The goals of your IEP should state

• The educational standard or level that you intend to reach. It may be the same as the standards for general education, or it may be more or less than that (or more in one area and less in others).
• How the school will give you the opportunity to reach that level.
• How you will adapt to what the school can provide. (The school cannot teach you exactly how you want it. It is always a compromise and you meet in the middle.)

It’s a free country. No one can require you to change your personality, beliefs or learning style, unless it is harmful to others.

People change. You may have had a certain unhelpful behavior pattern, but that’s not a good focus for the IEP because it is negative, probably temporary, and it may not be caused by what people think.

You (and family) are in control. You have to agree to the plan. You don’t have to accept special ed status at all. If having a label doesn’t help you, ignore it.

Debate topics

Inclusion versus separate classes – What’s appropriate? – Should you be able to learn whatever you want? – How much accommodation is reasonable?

Creative assignment

1. Design a perfect school for yourself, either in pictures, notes, or paragraphs. Or describe a perfect school day. Base it on your strengths and interests. You can include ideas like no tests, no bullies, be able to study kangaroos all day, whatever would make it an exciting place to study subjects you like, and would help you be successful – in whatever way you understand success.
2. Discuss with a teacher: In your perfect school, would you reach a higher or lower level in any subject area, compared to the real school? Is there something about your unique personality or disability that means you should reach a different level?
3. Discuss with a teacher: In you perfect school, what is different about the environment or the way things are done? Is there something about your unique personality or disability that requires things to be done differently?
4. “Accommodations” are what the school has to do differently for you based on your IEP. Look at the list of common accommodations. Which of these would you like to have, and which do you really need? What other ones do you need? Find a way to meet in the middle – something that you can adapt to, and a school can actually do.