“You are growing up so fast Kerry!”
The first time anyone ever told me that was when I was in third grade. It was one of the aides in my class. Between now and then I’ve probably heard this ad nauseum. You see, I always was afraid of growing up. Being an adult now is such a scary thought but probably what’s scarier than that is losing my identity.
You see autism has become a part of my identity. I am no longer the “kid with autism” but “autistic” instead. (From time to time, though, I tend to flip-flop between the wording in my writing without even realizing.) This is an interesting topic that has been spreading through the autism community. The more I seem to engage people about my self-advocacy the more I hear strangers say things such as “I would have never know you had autism!” or “Kerry, it’s so great how far you came from where you were before.” The whole topic of “Outgrowing Autism” and “Coming of Age with Autism” is something many adults will face within the next decade.
A big concern is that if more people believe that autism can be “outgrown,” then autistic adults could lose self-advocacy opportunities. Most of my autistic tendencies are things that a random person off the street wouldn’t see. I’ve had people come up to me in the past who have asked if I was misdiagnosed or asked how I could help consult when I didn’t show any “obvious characteristics.”
These types of individuals haven’t seen my struggles growing up, though. Being nonverbal till I was 2 ½, being unable to pronounce different letters, having dysgraphia, fine and gross motor skill difficulties, sensory integration dysfunction—you name it that was me. There are many individuals on the other end that see me now and say that I give them “hope” though and ask me questions based on my experiences from there to now. This is where we need to steer our future because the fact is that the popular image in the autism community right now is with kids in their early childhood. It’s that simple and this is part of the reason.
Don’t get me wrong though, early intervention is key. But we also can’t forget what happens when our kids grow up. We can’t assume some will outgrow autism because, as I mentioned above, autism is a part of who you are. We must be prepared to help each and every adult if need be to avoid the possibility of someone slipping through the cracks.
The main focus of what we hear about in the autism community today is on early intervention and services for children and families. With the staggering rise in the rates for children with autism I challenge us to look ahead 20 years and start to develop services and supports for them. An equally important group are the adults with autism who need services now. That is why my perspective as a young adult with autism is critical to the discussion. I can be the voice of the young adult with autism and by speaking out help define the issue. There can be no solution until we acknowledge there is a problem right now for autistic adults in areas of employment, insurance, housing, and supports.
So I may be an adult now but please understand that my name is Kerry and my identity continues to be molded and shaped by the steps I take as an individual.