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Why We Walk: To Make a Difference for Adults on the Spectrum

This blog post was written by Emily Gerson Saines, a long-time Autism Speaks supporter who will be walking in this year's Los Angeles Walk Now for Autism Speaks. Find out why she walks below and share your story with iwalkfor@gmail.com!

A few months ago, we celebrated my son Dashiell’s 21st birthday. I remember the excitement when we celebrated my older son Max's 21st birthday. Sadly, for Dashiell's birthday we put on a happy face for him, but inside we were filled with dread and fear as we had already previewed what the world had in store for him in his adult years.

We knew that when Dashiell turned 21 the school bus would stop coming, but we weren't prepared for how ill-equipped the world was for him and the other children with autism who would also be reaching their 21st birthdays and looking for independent housing.  

There are a few facts that became apparent quickly: Statistically speaking, the odds of a child with autism being granted adult housing when they turn 21 are slim, extremely slim. Even if your child is one of the chosen few who receives housing, meeting the legal requirements to find a house is debilitating, stressful, exhausting, and unjust. We learned that there is a term called "saturation" that has no true legal definition, but is an excuse that municipalities hide behind to shun children with autism from their communities. We learned that there is a law in New York State called the Padavan Law that ultimately makes it easier for a child molester to move into a neighborhood than a person with autism. And perhaps most hurtfully, we also learned the true definition of N.I.M.B.Y: "Not in my backyard”.  

Fortunately, Dashiell was one of the few granted adult housing by the state. In the months leading up to Dashiell’s 21st birthday, my husband made it his full time job to find a house for him and the three other young men with autism, and by some miracle we found a house and were able to come to terms with the seller. But our excitement and relief was short-lived. Both the town of New Rochelle and the neighboring communities came out en masse to oppose our boys moving into what they viewed as “their" neighborhood. They threatened the seller with arson and murder. They publicly accused our boys, innocent young men who they had never met or spoken to, of being a danger to society, a safety risk and other unspeakable things. An elected official even stood up in a town meeting to say that he would make it his life's mission not to allow "those kinds of people" into his neighborhood. And so, our application for housing was denied.

Rather than wallow in our self-pity, we decided to fight and bring out the big guns: Autism Speaks. Led fearlessly by Liz Feld, we now had a voice. A voice that could outnumber them; a voice with media access; a voice that would shine a light on these people and expose them for what they were — bigots. I knew our luck was changing when the mayor of New Rochelle posted this letter on the New Rochelle website: 

http://www.huffingtonpost.com/noam-bramson/child-home-neighborhood-c_b_5600651.html

It was brave and it was honest. In it, the mayor spoke of his shame at how unfairly our boys had been treated and his regret for not speaking up sooner. We appealed our case at the state level and I am extremely proud to say, WE WON!  This past Friday, we received our certificate of occupancy and, as is their legal and moral right, our boys, regardless of their disability, will have a home.

But our fight is far from over. I am proud to have played a role in the founding of Autism Speaks and am unwaveringly grateful that it has grown into an organization that has changed the course of my own son's life. The number of children diagnosed with autism is on the rise every day: 1 in 68 children and 1 in 42 boys. Due to those sheer numbers, the odds of them getting housing are even slimmer than they were for Dashiell. As the parents of these children grow older and pass away, there will be an untenable population of homeless adults with special needs.  

We cannot wait to deal with this issue. We need to change laws. We need to institute programs that make our children taxpayers rather than tax takers. We need to get roofs over their heads that are sustainable throughout their lives, and we need to educate our neighbors that people with autism are not a detriment to a neighborhood, but rather a peaceful and friendly addition. We are in a crisis that is heading toward a national disaster, and we must take action now. 

On Saturday April 18th in LA, my family and I will be walking proudly alongside our friends at the Autism Speaks Walk. Please help us make a difference by clicking on the link below and making a donation:

DONATE HERE

My birthday is coming up — please don’t send me flowers or gifts. Your mother’s birthday is coming up — she has enough stuff! If you need to show your clients how much you appreciate and respect them, do so by making a donation to Autism Speaks in their name, and you will in turn receive their — and my — appreciation and respect for making the world a better, kinder, and healthier place.  

Please give, and if you can, give generously.

Thank you! Thank you! Thank you!

Why do you walk? Tell us at iwalkfor@gmail.com. See if there is a walk in your area at walknowforautismspeaks.org!

 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.