Autism Is Not A Crisis. But Families Do Need a Plan.

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at AutismWonderland.

Five years ago, when my son Norrin was first diagnosed with autism, Autism Speaks was one of the first sites I visited. The month following Norrin’s diagnosis, we participated in the Autism Speaks walk and helped raise money for the organization. That walk was the first time I was able to see other kids like mine. I saw families and friends walking together, holding hands in support. It made us feel a little less alone.

I don’t always agree with Autism Speaks message. I don’t desire a cure for my son. I don’t see him as a victim. I don’t see our life as a tragedy. And it hasn’t destroyed our marriage.

Has raising a kid with autism been easy? No, it hasn’t.

Do we worry about his future? Absolutely.

That’s just the reality of our life. It does not mean I love my son any less or that I wish to change him.

On Wednesday, November 13, 2013, Autism Speaks gathered in Washington, D.C. with “an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.”

The summit has sparked many debates in social media. There are many who believe that Autism Speaks demonizes autism and promotes fear mongering. And I understand why some parents, advocates and autistic adults feel that Autism Speaks does not speak for everyone. Because it doesn’t.

But there’s another side to Autism Speaks. It’s the side that I support. Autism Speaks partners with organizations to help create sensory friendly programs. Like the Family Access Program at the The Intrepid Sea, Air & Space Museum Complex in New York City – the program grants autism families early access to the museum before it opens. (And it’s FREE.) They also have trained staff on hand to provide guided tours.

Autism Speaks also launched a campaign reaching out to the Latino community to raise awareness. Studies have shown that Latino children are often diagnosed much later (after five years old) than white children. Being Latina and living in a predominately Latino part of New York, I appreciate these efforts to educate the community.

I don’t believe autism is a national crisis or epidemic. But we need a plan. Families need guidance and our children need opportunities. Our kids need more appropriate schools to meet their needs.  And teachers and staff who understand them. Budget cuts to special education need to stop. We need more awareness campaigns. We need insurance coverage.

Autism needs to be understood. Not feared or cured. And individuals with autism need more options. We need to pay for services now – while they are young – so that the need may be less, later. We need to create safe places for them to live when they are older. And jobs that not only increases self-esteem but gives them a sense of purpose and makes them  feel like a part of society. I hope this is the real take away of the Summit.

We don’t all have to agree with Autism Speaks. But I hope this summit opens the door for more opportunities for advocates, autistic adults and autism organizations to have their voices heard. And I hope that Washington will be ready and willing to listen to all of them.

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  1. by This Is My Son. This Is Autism. | To The Max

    On November 20, 2013 at 5:32 pm

    [...] know last week, I wrote about how autism wasn’t a crisis and I stated my reasons why I still (sort of) support…. I still stand by that. But I can’t and don’t believe that we live a life in despair. [...]