No need to make people normal but autism treatments are essential

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An article in The Guardian asks “Do we really need a cure for autism?” (see http://www.guardian.co.uk/commentisfree/2013/feb/22/does-autism-need-a-cure). Following is my person view ...

This is a complex question. First, let's be clear about what is meant by “autism”. I take “autism” to mean a “severe and pervasive impairment”, as the group of disorders known as autism spectrum disorders (ASD) are described in the DSM-IV.

But there are people who use “autism” to mean a wider category of behavioural and personality traits.

For example, some school authorities require that students are awarded/burdened with this clinical label before any of their education needs are addressed. The requirement of a clinical label in an education setting so that administrators/bureaucrats will allocate resources to meet diverse education needs is inappropriate.

So in cases where an “autism” label is about additional needs in education settings, then “no, we do not need a cure for autism” … we need funding to meet all children's needs and responsible education policy that does not demand inappropriate clinical diagnoses.

Some people use “autism” as a label for a type of “neurodiversity” or difference from normal (whatever "normal" is). They label their (perhaps) autism-like traits, that are not disordered, as “autism”. This is not consistent with the DSM-IV diagnostic criteria for Pervasive Developmental Disorders. Typically, these people say they do not have a disorder; some of them say they have a “condition”, not a disorder, and want to replace ASD with the term “autism spectrum condition”. I encourage their efforts to get the community to appreciate (sometimes celebrate) and accommodate their difference, their “neurodiversity”, but since these people do not have a disorder (that is, severe and pervasive impairment) I suggest that they do not have ASD.

We don't need to cure “autism” in people who do not have ASD. I'd prefer that these people did not try to highjack the term, autism, for their own purposes. I'd rather they came up with a term of their own.

Opinions vary on what “cure” means. The article says:

Autism is a lifelong disability that cannot be cured in a medical sense.

Various scientific publications contradict claims that “autism” is inevitably life-long (see http://a4.org.au/a4/node/631 for recent examples). Claiming that “autism is a lifelong disability” asserts that once a person is given a diagnosis they cannot improve sufficiently that the ASD diagnosis becomes inappropriate. But there are people who were diagnosed with autism then following treatment for their autism they function independently, without discernible disorder, in the community. If they are without disorder, then they no longer meet the diagnostic criteria for ASD.

In my view, a person who meets diagnostic criteria for a disorder, then as a result of treatment no longer meets those diagnostic criteria, has in my view been “cured in a medical sense”. Usually, people who were treated successfully for their autism still have many traits that we all associate with autism, but these traits are not the severe and pervasive impairment that are the diagnostic criteria for ASD.

We are inclined to think that “cure” means there is no sign of autism left but what if we can remove the disorder associated with autism without removing some, maybe all, of the positive personality features that we also associate with ASD. In my view, these positive personality features are neither exclusive to nor defining of autism.

Nor does “cure” mean no remaining sign. There are many examples of medical cures that leave clear residual signs. For example, most surgery leaves visible scars, a clear residual sign, but surgery cures many patients of their condition/disorder. It is unreasonable to expect treatment for autism will leave no residual signs. Nor should we expect that treatment will always result in cure.

Many will find this view challenging because it suggests some people who are regarded as iconic examples of living with autism may no longer have autism. It suggests that people who once had autism but who now lead a fully functional life, albeit not a “normal” life, do not have autism. Since their different behaviour is no longer disordered it should not be called autism as described in the DSM. If their post-treatment behaviour is not disordered then they do not meet the criteria for a disorder, they no longer have autism.
I applaud the neurodiversity movement for challenging social conventions; for expecting our community to accept different and diverse behaviour … for their questioning what people regard as disordered and what should be respected as functional behaviour.

I also believe that it is essential that we treat dysfunctional or truly disordered behaviour that is a barrier to independence and a functional life.

There will be grey areas: people will have different views about some behaviour at the margins is dysfunctional. I suggest that people who have/had autism should, as much as possible, decide which of their residual behaviours they regard as dysfunctional for them and how they want to proceed.

So my view is that we need to try to treat the dysfunction that the DSM describes as autism. We should not try to make people normal; treatment for autism needs to focus on real dysfunction/disorder, it is not about difference.
The article says:

The dramatically higher numbers of children diagnosed with autism have led some to declare that there is autism epidemic. This ignores the fact that we have developed a better understanding of what autism is and thus diagnose it more often. …

The number of people diagnosed with autism spectrum disorders has increased substantially over the last 2 decades or more. And some refer to the increase diagnoses as an epidemic.
But people reporting on the number of diagnoses do not ignore changing diagnostic criteria and/or growing awareness of autism. For example, a recent article in the prestigious science journal, Nature, (see http://www.nature.com/news/the-prevalence-puzzle-autism-counts-1.9280) says:

Shifting diagnoses and heightened awareness explain only part of the apparent rise in autism. Scientists are struggling to explain the rest.

The available data suggests there is a real and substantial increase in ASD but the reason for the increase is not known. Few reports on prevalence collect data in a manner that can separate changing interpretation of diagnostic criteria and increased awareness from any real increase.

The Australian Bureau of Statistics surveyed people with a disability generally, not just people with autism. Their results show the number of people diagnosed with both severe or profound disability and with autism rose substantially from 2003 to 2009 (see http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4428.0main+features42009). This shows that the increase is not due entirely to diagnosis of milder cases of autism.

The article says

Autism is a neurological disorder; it is not, as originally classified, a psychological one. Currently there is no known biomarker for autism, and the disorder is diagnosed based on observations by teams of experts. Most scientists agree that autism is of genetic origin and begins to develop while a child is in the womb.

Actually, the nature of autism is not known. Most scientists agree that any genetic contribution to autism is extremely complicated. Some scientists suspect there may be many forms of autism. Some scientists feel some instances of autism are “late onset autism” hence may start outside the womb.

In conclusion, there is no need to make people “normal” … neurodiversity, or “difference” or whatever you want to call it (please do not call it "autism"), should be appreciated and celebrated. People who have severe or profound impairment, including dysfunction described as ASD, need treatment for their disorder. So, “yes”, we do need to treat (cure if we can) autism.

Bob Buckley
23/2/2013