Autism Awareness

April is Autism Awareness Month and April 2, specifically, is Autism Awareness Day.  As the parent of an autistic adolescent, I'm already aware.  However, if you are wondering what's with all the blue profile FB pictures and the puzzle pieces, that's what it is for.  Now you know, too.

I find it challenging to write about autism because the experience is different for every family impacted by it.  The autism community is full of differences of opinion on everything from vaccines to the effectiveness of different therapies.  Debate even rages on regarding whether it should be "autistic person" or "person with autism".  I am one parent of one child with autism, and at this point I feel like we've found what works for our family and our son, and my personal philosophy is that I need to teach my son how to advocate for himself, how to live in the community, and how to be as independent as possible.  I have no idea what causes autism, and I don't really care at this point.  So now you know my philosophy, too. 

When your children are little, it's hard to believe that they will ever grow up.  That's probably true for all parents.  Then those babies become adolescents, and it's like whoa! Where did the time go? One day they're adorable tots and the next day they're 6 ft. tall and drinking a gallon of milk a day.  When you have a teenager on the spectrum, it's even more like, holy cow! We better start getting with the transition planning!

All that is why I am issuing this warning/challenge to you, the greater community:  He's a teenager, he's growing, and he's coming your way in about 6 or 7 years, ready to work, live away from his mom and dad (eventually), be part of the community, and have a fulfilling adult life.  Are you ready for him?

No, you're not. 

People like to send me articles on autistic adults (or adults with autism) who find amazing and fulfilling work in all kinds of fields like LEGO constructors, video game gurus, or nuclear physicists, and those articles are inspiring and I enjoy reading them.  However, I'm fairly certain those people represent a very small number of adults on the autism spectrum looking for employment (when asked, the Son of Never Stops Eating has expressed a wish to own a hamster store, or be a professional kayaker. Or both).  Once children with autism become adults with autism, the opportunities diminish significantly, especially if you are not a wealthy person (the Mom of No is not wealthy, just to clarify).

Among my friends who also have adolescents on the spectrum, or adolescents with disabilities- because a lot of these concerns are disability issues, not just autism issues- a major topic of conversation is "What happens when they are finished with school?".  The answers are not readily forthcoming.  I could bore you with the details of all the planning that is involved, but I'll just say it's frustrating, time consuming, complicated and involves several bureaucracies.  The need is growing but the resources aren't expanding. 

A sampling of the problems that the Dad of No and I will be attempting to solve in the next few years:  Where will our son live as an adult?  How will he get job training, and where will he find a job?  How will he work and still maintain eligibility for the social services he needs?  If it turns out he can't drive, how will he get to and from work?  When his father and I are no longer able to help him, who will make sure he goes to the dentist or that he files his income tax? Will he be welcome as part of a faith community? What will he do for fun? Who will his friends be? Who  will help make sure that he isn't taken advantage of? What can we do, as his parents, to prepare him for this transition? To teach him how to advocate for himself?

These questions are not easy ones to answer.  At some point, however, they will need to be.  My son is growing up and he's coming your way, community- and he's not the only one.