Autism Awareness Month - were you aware?

This month of April has been Autism Awareness Month.

For me it has been bitter sweet. On one hand, on a personal level it was a very productive and exciting month with amazing guests. We kicked off our Autism Awareness campaign with the most well known and inspiring of all autism advocates - Dr Temple Grandin. We brought you a young lady, Taylor Morris, who brought us into the "Other World" and stole our hearts. We are ending our month much like it began with an incredible author and advocate John Elder Robison. I have tried to spotlight every aspect of families and adults living on the spectrum while still featuring other amazing guests and Children's Foundations. Our quote for Autism Awareness Month on The Coffee Klatch - "With education will come compassion - its time"

The above, of course, was the sweet.

In interviewing many children's organizations and major foundations over the months I have been taken by the camaraderie and close knit communities that they have formed. The wearing of certain colors and ribbons to show support for many diseases and disorders shown brightly.

Where are the colors and ribbons and media attention for Autism? The color was blue. New York City did its part and on April 1st lit the Empire State Building top blue in honor of Autism Awareness month. I did see the beautiful brightly colored puzzle piece ribbon on many Twitter profiles. What I did not see was ONE person wearing a ribbon - selling a ribbon or sporting a ribbon bumper sticker.

Why?

After having The Christopher Reeve Foundation as my guest I began to think about it. Their global efforts and research sharing is bringing results and hope. They are a solid community.

What differentiates the two? Unity.

The divide is significant. On one hand, there is tremendous support and information sharing among both parents and affected adults. On the other hand there is hostility, disrespect and at times a complete lack of compassion for those not sharing the same view.

It is hard to wrap my brain around the complexity of it all. It is hard to not have compassion for all involved and all their efforts. It is also hard to express the devastation in the voices of the parents or the frustration of not being heard and part of the solution for the affected adults.

The views, opinions and convictions of our advocates are as vast and overwhelming as Autism itself. Perhaps it is in the continuum where the issues lie. Perhaps it is the frustration of so many different presentations and degrees in its symptomatology, causes and levels of ability that cause the divide. I am not sure. What I am sure of - it is not working.

Don't get me wrong - these are great people trying to do great things. These are great parents trying to raise great kids. It's all great - except for the unity.

The divide lies in your belief

Neurodiversity

Neurodiversity - atypical (neurodivergent) neurological wiring is viewed as a normal human difference that is to be tolerated and respected as much as any other human difference. - Gregor Wolbring

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind. - Harvey Blume

Neurodiversity The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood. - Mike Stanton

Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:

I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.

The "Cure"

The search for the cure. Those searching for the cause through environmental or genetic research in hope of a cure for autism.

The "Cure - "the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes". - Andrew Solomon

For the parent with a child that is nonverbal - self injurious - has complete inability to communicate or interact with other people - loses previously acquired ability to say words or sentences - have continuous need to performs repetitive movements, such as rocking, spinning or hand-flapping or are oblivious to pain yet cannot tolerate the gentleness of a mothers touch - Can you blame them?

There are wonderful Autism organizations doing amazing research and finding the links and genetics attributed to Autism. They give hope - they know Autism is not going away. They are looking for the pieces to the puzzle as it is not a matter of putting them in the right place but of first finding them.

Until then, many parents will be desperate for a cure. The lack of protocol has led to parents seeking unsubstantiated therapies and treatments. Some argue that certain therapies and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous.

And lastly,

The Elimination of Autism - The search for use of prenatal genetic testing through a genome project. Some are concerned that the "ultimate cure" will be a genetic test to prevent autistic children from being born and that most fetuses with autism would be aborted if prenatal tests for autism are developed.

Excerpts from a wonderful article by Spencer Hatton:

"There's nothing worse than seeing a desperate parent, raising a child with autism, believe a cure is at hand.

But in the world of autism, disappointment quickly follows hope as cures vanish, wasting precious time and money.

I know. I was one of those parents".

So - what is the answer? Well if you listen to Dr Temple Grandin - it is early intervention - one on one early intervention is the most important accommodation for a child. This one on one should encompass many different forms of OT, play and behavioral therapies. Modeling - exposure to new things - a proactive approach to sensory issues. The understanding that many skills are not naturally acquired and may take a long time to obtain even if not mastered.

In my mind - the answer is acceptance. Accepting the vast differences in severity and ability and lifestyle. Accepting that there is no "one" cause and there will be no "one" treatment. Accepting that it is time to stop holding on so tight to your beliefs that you impede the goal. Accept that 1 in 110 (conservative figure) children will be given a diagnosis of autism on some end of the spectrum and that is a HUGE population. Accept that Autism does not go away - you do not grow out of it - our upcoming adult generation will have a significant autistic population.

Accept that our world is a better place due to the amazing Aspies that have brought our technology and science fields to the forefront of the world. Accept that not everyone needs or WANTS treatment. Autism for many is a gift - a true gift that they would not trade for anything in the world. Start paying attention to the people around you - start reading some of the amazing novels and enlightening books written by people on the spectrum.

Read "Look me in the eye" by John Elder Robison and be inspired by this man's story. In it you will find insight into the painful memories of a childhood of an undiagnosed boy and the struggles to "fit in" and how time, personal growth and a communities acceptence made this aspergian whole.

Accept that there are parents seeing horrendous suffering and want desperately a cure. Accept that a mother should be able to hold her child and kiss her child without causing pain.

I call for a show of unity within the Autism community both by those affected, those with children and mostly, the prominent Autism Advocacy organizations.

It's time.