Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?".
Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside...
Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own.
Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big.
The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available.
These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter.