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The List of Waiting Lists You're Put on When Your Child Is on the Autism Spectrum

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No matter where your child is on the autism spectrum, you have probably experienced having to put him or her on a waiting list at some point for some type of support. Whether it was to get in for a diagnosis, to go to an out-of-district school for those with learning disabilities, and/or, when your son or daughter has reached adulthood, to receive state-funded day services and/or vocational rehabilitation programs.

If you ever go on social media you are probably only a few minutes away from a wine or coffee meme from one of the members of our autism community because of these lists. Waiting lists are awful. Depending on the state you are in and what funding is available, a waiting list could last a few days to even years.

My parents experienced those waiting lists again and again during my adolescence. It took my parents 18 months to finally have me receive an autism diagnosis when I was 4 years old. Then there were also waiting lists for me to get into a school that specialized in those with learning disabilities. The list of waiting lists goes on and on.

When I think about that long road from then till now I often think how my parents’ preparation really made all the difference. That’s why I can’t advocate enough for planning ahead! As I learned from a Transition Tool Kit I read at, there are more people with autism currently waiting for things such as appropriate supported living settings than there are openings in those settings. It brings the whole question of, “What happens when the school bus stops coming?” to a whole other level.

When you are planning ahead I recommend reading more about what your state provides in terms of therapies and supports for those with disabilities. Fill out all appropriate waivers and forms as early as possible and keep yourself ahead of the game.

Finally, while you are on those waiting lists, regardless of what point you are at in your child’s development, remember to advocate for others in the special needs community. Advocatingfor legislation specifically focused on our community can result in huge dividends. Word of mouth has moved mountains in the past, and we can do the same for the causes that are important to us. Become an advocate and champion for us, like my parents did for me.

It can change so much for our loved ones.

Autism Speaks’ Transition Tool Kit is designed to assist families of individuals with autism on the journey from adolescence to adulthood. You can read more about the tool kit here.

A version of this post originally appeared at

Image by notwaew

Originally published: October 19, 2016
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