The broader autism community (parents, educators and other professionals) and political autism activists are at war. As a result, in seems that many of them, particularly the latter, have totally forgotten about the children and adults with moderate to severe autism who need their help and guidance.
(1) The Neurodiversity Vs Disability Battle
The first battle in the war relates to autism diagnosis and what has euphemistically been called the “neurodiversity” versus disability battle. Essentially, what has been happening is that, for the politically correct reason of including stakeholders in political decision making, people with mild or borderline autism (Aspergers) are making decisions that affect those with moderate to severe symptoms.
For example, many high functioning autistics have given presentations to parliamentary and congressional committees, to court justices, to politicians and to television audiences. They have also been appointed to important councils (e.g., President Obama recently appointed Ari Ne’eman to an administrative post on the U.S. Council on Disabilities) with major implications for the future of autism treatment.
Some, like Ne’eman, are not only anti-research and anti-disability but even anti-treatment and anti-cure (unlike other groups who desperately want more research and treatment options), meaning they are being asked to judge the needs of others on the basis of their own reality.
So, that is the first battle that has to be won. People with mild autism/Asperger Syndrome should not be in positions of power when it comes to diagnosis, treatment or research options. Consultation, by all means, but not in a position to make far reaching decisions (such as influencing proposed changes to DSM-V).
(2) The Anti-Vaccine Battle
The anti-vaccine battle is alleged to have been started by Dr. Andrew Wakefield, who is said to have single handedly scared thousands of parents worldwide into NOT vaccinating their children. Well, no matter what Wakefield is alleged to have said or done, it doesn’t change his hypothesis one bit. Meaning, that while some research has concluded that vaccines are statistically safe, we need much more research to assure parents that vaccines are totally safe.
So, rather than try to put the genie back in the bottle, by using Wakefield as the excuse, let’s make sure more research is done on the possible vaccine connection — by researchers who are meticulous in method and conclusion and are not funded by drug companies or other vested interests. And, parents should make sure their children are vaccinated to avoid childhood deaths due to avoidable diseases.
(3) The Anti-ABA Treatment Battle
While the anti-treatment battle is related to the “neurodiversity” issue, there is also a major battle over autism treatments that are based on some aspect of behaviourism theory. There is Applied Behaviour Analysis (ABA), the Lovaas Method and Son-Rise, which is gaining in popularity as being more humane.
However, no matter what behavioural method is being used, you have critics screaming that they are abusive and against the child’s human rights. Well, not being able to function in school and society is against the child’s human rights too.
In fact, sometimes tough love is necessary in order to help a child. Do we not stop a child from touching a hot stove or running across the street without looking each way? Do we allow our children to jump into a swimming pool before they can swim?
Behaviourist methods are no different. They are simply an intensive type of therapy that causes the child with autism to attend or pay attention long enough to learn a skill or new behaviour.
So, I would suggest we simply stop the treatment war and find out if a therapy works. If it does, then we as a society need to support the family emotionally and financially to help the child be all they can be, whatever that is.
And, in that vein, when conducting research about therapies, we should make sure children with severe autism are included. Because if they are not, just as when we have individuals with mild autism deciding on diagnostic criteria for all autistics, results are not going to be of any use to the most severely affected if they weren’t included in the subject pool.
(4) The False Hopes Battle
What I mean by “false hopes” is when claims are made that if only parents were to use this or that “alternative” therapy, their child’s autism would disappear. Poof. Gone. Just sign on the dotted line. Pay “x” amount of dollars and everything will be made right. True, some alternative therapies have value and work well in some situations.
For example, there are such therapies as: hyperbaric oxygen, chelation, acupuncture, homeopathic, music, swimming and horse back riding. And, I personally know of children who became more alert and receptive to ABA therapy after several oxygen therapy sessions. But, the improvement was short lived. So, parents sometimes spend money they can ill afford on a hunt for a miracle that doesn’t come because that is the elusive nature of autism.
The Crux of the Matter
We can all talk until we are blue in the face about what causes autism. We simply don’t yet know enough. We can also criticize everything and anything parents do to help their children. But, denying children treatment or denying their disability is not only just plain wrong, it is unethical in a civilized society.
What we do know, however, at least those of us who have lived with children with moderate to severe autism, is that autism is not a socially constructed disease. Nor is it about neurodiversity and simply a different way of looking at the world.
Put bluntly, autism is a neurological disorder and for most, it is a blight on their lives and their parents lives and no amount of sugar coating makes it different. Do we love our children? Absolutely, with a passion sometimes. Are we glad they were born? Yes, we are. But, is it tough? Yes it is. When we get to be my age, do we worry what will happen to them when we are gone? You bet we do. Would I give anything that my son (now 45) be cured? Absolutely. But I know that is simply magical thinking and that my time is best spent dealing with his reality and preparing as best I can for his future without us.
In the meantime, if I could make one or more recommendation to parents, politicians and researchers, they would be:
- Researchers, find out what works and what doesn’t work.
- Politicians and advocacy groups, stop listening to high functioning autistics who have no idea of the damage they are doing — simply because they perceive the world in their own way.
- Parents, do what works for your child and ignore everyone else. Prepare best and worse scenarios. Prepare your children to go to college if that is possible. But also prepare them to receive community and/or residential care — by making sure society (local, provincial and federal politicians) does not let them down by closing programs and residential facilities.
In other words, we all have a part in creating the conditions for a ceasefire in this war and its many battles. This article is my contribution to that goal by trying to identify the causes of these various battles. Will it help? I doubt it. But, we all have to try — for the sake of our kids.
Endnote: The autism war is extremely complex. No doubt I have left out some battles and my interpretations of neurodiversity and other issues may offend some. My apologies if that is the case. However, over and above my role as a parent of a child with PDD and ADHD, I spent two decades in private practice dealing with children and adults with special needs, including those with moderate to mild autism spectrum disorders and learning disabilities. So, if there are any limitations in this analysis, it is my fault and my fault alone.