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Hope for autism is a lightning rod, not an eraser

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My child, who has autism, is 26 years old. Does that make me an expert? Yes, I am an expert about my own child. You’ve heard it before, “if you have met one child with autism, you have met one child with autism”. You have also, no doubt, read the “Welcome to Holland” essay by Emily Perl Kingsley. She likens raising her disabled child to planning a trip to Italy and ending up in Holland. The language is different, the food is different, and the people are different. However, in time, a new appreciation is born. This is not a recipe for many parents who are living with the severe effects of autism.

Autism is a force to be reckoned with. There is no monopoly or rubric for how parents should react when their child is diagnosed. Like a bulldozer that tramples hopes and dreams, a new reality emerges. It is impossible to tell a parent whose child is literally climbing the walls, to accept him/her for who they are. The search for science and research is the only thread to hold onto. There is no escaping the pain. Be it audible or inner hysteria, we cry, we grieve and ultimately we plan.

Friedrich Nietzsche said “That which does not kill you makes you stronger”,and when autism enters your life, there is no choice but to make new hopes and dreams.

My empathy goes to a mom who published a blog yesterday about her disappointment in Autism Speaks, for betraying “those with severe autism disorders and their families”. She believes that “public understanding of autism disorders” has been skewed. She laments that Autism Speaks highlights the good, the promising stories, forsaking those who need more investigative research. Complacency is her enemy: Since my 17 year old son was diagnosed with autistic disorder and profound developmental delays (and more recently, like many who share those conditions, with epileptic seizures) little has been done to advance our knowledge of causes, to find treatments or cures for autism disorders. In terms of our understanding of autism we have largely regressed in public understanding of autism disorders.

I don’t believe that Autism Speaks has forgotten about our children. Giving hope is a lightning rod; it is not an eraser. Letting parents know that intervention is a key ingredient in helping our children is a good thing. However, this is not a cure-all. Research and science are vital. Autism Science Foundation's mission statement includes an essential principle: "We believe that outstanding research is the greatest gift we can offer our families. While embracing neurodiversity is fair, all of our children have a right to be recognized; whether high or low functioning, their places in the world are equally indisputable.

I recently had a conversation about the diagnosis….People are confused. ”Is it a mental disorder?” “Is it a neurological condition?” The US National Library of Medicine states: "Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism.

Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism. Similarly, language abnormalities are more common in relatives of autistic children. Chromosomal abnormalities and other nervous system (neurological) problems are also more common in families with autism."

While confronting the effects of autism, there is much to investigate. Another Nietzsche quote seems applicable: "You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist."

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