Monday, July 6, 2009

Is Autism a Disease or a Disorder?

Many of us who have been supporting persons with autism don't think it is a 'disease' we can cure. It is a 'disorder' that is adversely affected by things that can be cured: such as food allergies with a gfcf diet or hypersensitive hearing with a hearing aid that blocks most noise or acceptable strategies to deal with sensory overload such as using an exercise machine instead of flapping and spinning. Many of these 'symptoms' of underlying disorders/diseases can be treated and cured. Certainly if we can cure underlying illnesses it will be easier to teach needed communication and social skills to those who truly have Autism Spectrum Disorder.
If you couldn't communicate what you needed or wanted you would become very frustrated too. Maybe you might not even be able to figure out what the need is to start with because you are not understanding what is happening in the world around you, if you are even noticing it. Eventually you will communicate something, only it may not be in a very acceptable manner, thus a misbehavior! OOPs, that was a long way to describe some persons with autism!
Maybe it does not take 'rocket science' but we might have to be very creative in our efforts to find ways to help manage the disorder.
Often it takes many years of intensive therapy and we have found several effective ways to do that. However, the cost is often very prohibitive; one that often only the wealthy can afford. Also therapies may not be "one size fits all" so 1 year of 1 specific therapy may not be what is needed for all on the spectrum.
We do need trained therapists for sure, but they also need to be able to think outside the box too and have other training/knowledge/experience that will assist them in developing a program that meets the needs of this little person and their family. There is an assumption here on my part that we are providing therapy to a young child while teaching & supporting parents/caregivers the skills they need to deal 24/7! This is called EARLY INTERVENTION. So early in fact that it is done in the home because the child is not going to school yet. If we do this right, many or maybe most will not need intensive 1 to 1 support in school (another story).
We know that autism is a disorder and we were smart to call it Autism Spectrum Disorder. The 'spectrum' part tells us "one size does not fit all". We need to identify as early as possible when a team of specialists can assist in planning an individualized program plan to teach children and families how to treat what may need to be treated and to learn skills to bring order to the disorder. The greatest need will always be to provide a way to enable effective communication, which is a two way exchange remember, and then to teach socially acceptable behaviors/strategies. Now the person with autism will be able to manage to do all the things they have to do in the world of persons without autism! They will always be autistic but it will be more "invisible" and acceptable!
Perhaps those children we feel we have "cured" would have, in the past, have been diagnosed as having autistic tendancies or autistic like behaviors. We treat underlying diseases and we effectively change those behaviors and they are "cured". BRAVO to those who have managed to accomplish this for many children.
Now we must figure out how we can do what needs to be done for those who cannot be 'cured'. This may not be 1 in 150 children anymore but it will always be too many until we effectively address all their needs!

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