What’s in a label? (take 2)

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.

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

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.

Autism and the DSM (part 1)

In my post Who decides what’s autistic, anyway? I posed the question of how, if at all, the diagnostic criteria for autism should be modified in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. This made the implicit assumption that autism should be defined in the DSM at all. But is that a valid assumption?

Every now and then, like in MOM-NOS’ post that inspired my post on prevention and cure or some comments to that post, homosexuality is used as an analogy to autism as a way to discuss how people and society’s views can change toward those who are different from the cultural norm. In fact, homosexuality was included in the first two editions of the DSM and was only removed in 1973.

One of the basic arguments that anti-cure autism advocates have made – me included – goes along the lines of, “There is nothing to cure, that’s just the way they are.” Is that the same as saying, “Autism is not a disorder, it is just a different way of ‘being’, like being shy, an extroverted socialite, or (sticking to the analogy) gay?” And if so, is that the same as saying, “Autism shouldn’t be in the DSM.”

Should autism – or Pervasive Development Disorders in general – be included in the DSM?

Before we answer, it is important that we consider the role an autism diagnosis plays in the life of an autistic child. A diagnosis of autism is the basis for much, if not all, of the educational and other services that autistic children receive from the government and education system. (At least that is the case in the US.) If autism is not a disorder described in the DSM, and therefore not recognized as requiring special accomodations such as an IEP, what does this mean?

Granted, even without a diagnosis it would be obvious that our autistic kids are different and will still require and receive some special services; NT kids are identified by local school personnel all the time for speech related issues early in elementary school and given the appropriate speech therapy, all without the formal process of IEPs. But most autistic kids need a bit more support and services than a local school is able (or willing) to accommodate on their own.

If we argue that our autistic kids don’t need to be “cured,” how can we justify that our autistic kids should receive special treatment and services above and beyond what the other kids who also don’t need to be cured of anything receive. [My personal response to that is that every child should have an IEP, but I know that is not going to happen for many ($$$$) reasons.] Especially when you consider that in many places it is difficult enough getting the needed services when there is a diagnosis.

So, should autism stay in the DSM? I say, “Yes.” But this, in turn, raises some more questions:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?

And if I’m saying that, how can argue against a cure?

To be continued….

tagged as: Autism, Asperger’s Syndrome, IEP, Parenting, DSM