No matter where your child is on the autism spectrum, you have probably experienced having to put them on a waiting list at some point in their lives for some type of support. Whether it was to get in for a diagnosis, to an out-of-district school for those with learning disabilities and/or when they have reached adulthood to provide them with 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 it. 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 a diagnosis when I was 4-years-oldof Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), a form of autism. Then there were also waiting lists for me to get into a school that specialized in those with learning disabilities. The list goes on and on.
When I think about that long road from then till now I often think how my parent’s preparation really made all the difference.
That’s why I can’t advocate enough for those that are reading this to plan ahead!
As I learned from a Transition Tool Kit I read at Autismspeaks.org, 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 waivers and forms as appropriate 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 special needs community. The more we advocate for legislation specifically focused on our community it can pay 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 will change so much for our loved ones.