Autism Awareness: Not Just for Kids

If you didn't hear anything about Autism Awareness this past week, you must have been living in a cave somewhere in Pakistan with Osama Bin Laden.  

You definitely don't watch TV.  You probably don't have a Facebook page.  And you probably don't know anyone with autism, though that is rare nowadays.  With the CDC estimate of 1 out of 110 individuals (it's closer to 1 out of 90 for boys, and in New Jersey it's closer to 1 out of 84), it's pretty much 1 degree of autism separation.  There is a very high liklihood that you are a parent, a sibling, an aunt, uncle, grandmother, grandfather, neighbor, co-worker or classmate of someone on the autism spectrum.  You might just be married to someone with autism, which would explain your spouse's brilliant and quirky mind as well as his eccentric and sometimes difficult behaviors. 

The United Nations General Assembly declared April 2 as World Autism Awareness Day.  I got to thinking about this and whipped out something quick on my blog about how I've been autism aware since my son was diagnosed with autism way back in April of 1997.  I'm also a contributing writer for Moms LA, so I wrote another essay about how Autism Awareness happens every month when you have a child with autism.  For parents like us, autism awareness is something we live, breathe, wake up to and go to sleep with in each and every day, 365 days out of the year.  I should also mention that this is true for the siblings of a brother or sister with autism, but Jacob is an only child so I don't have any perspective on this.  A lot of times it runs in families, so I can only imagine what it would much harder it would have been if I had been a single working mom with two kids with autism.  It certainly wouldn't have been double the fun, that much I know.

As I mentioned in my last month contribution, I'm the Program Director of the College Internship Prorgram that is opening this Fall in Long Beach.  CIP is a comprehensive post-secondary support program for young men and women ages 18 to 26 with high-functioning autism, aspergers, and learning differences that includes a residential component, supports for an academic or career track as well as modules to address health, wellness, social, executive functioning, and sensory challenges with a program that is specifically tailored to the student's needs.  Nothing like it exists in Southern California.  This week, we had our premiere open house to introduce Long Beach CIP to the public, and it was attended by over 100 parents, prospective students and professionals.  In the 25 years that CIP has existed, I don't think we've ever had a turn out this large.  We're looking to open with 15 students, and I don't think that this will be a problem.  Because of the comprehensive nature of CIP which includes a lot of one-on-one support, we're expensive so it's cost-prohibative for many families.  But our Berkeley program is vendored by the East Bay Regional Center, and 60% of its students have most or all of their fees covered by the state.  We're in the process of applying for vendorization with Harbor Regional Center, which covers the Long Beach area.  It's looking positive that this will happen, and when it does, we may just have a waiting list of students before we even open our doors.

Now that Jacob is 17 and is graduating from high school in two years, the issue of what he'll do after he exits the public school system is lurking just around the corner.  And if I thought it was rough having to deal with IEPs, the coordination of doctors and speech therapy appointments, was I in for a surprise.  Because finding the appropriate transition supports when he's a young adult is a cliff that he could very easily fall off. 

For all those parents like me that have a child with aspergers and high-functioning autism, we are fully aware of the challenges.  If we're lucky and our child is free of any medical issues, we're left figuring out an appropriate educational setting as well as services to address his behavioral, sensory, and social challenges.  If our local elementary school is equipped, we'll have a caring IEP team that will be responsive to our child's needs.  For a few years, I was reimbursed by Los Angeles Unified for 100% of the costs for his private speech therapy.  Jacob received very good OT at school and he had a one-on-one in the classroom that made it possible for him to stay in the class without making it disruptive to the other students.  The aides helped Jacob stayed focused in class and facilitated play with his peers.  Jacob was always invited to birthday parties, and the teachers always liked him.  In retrospect, I was very, very lucky to have the administrators at Marquez Elementary on his side.  

So, when Jacob was little, I considered myself the quarterback.  I coordinated services with the school and his therapists to make sure everyone communicated and worked together.  I was pretty much in control of the situation and that definitely was empowering.  I could facilitate playdates.  I communicated each day with his aide and touched base often with his teachers.  When Jacob left Marquez for a non-public school, I continued to have constant contact with those teachers.  When he left that school and attended the tiny private school that I ran at the time, I couldn't have been more involved if I tried. Then when he enrolled at Culver High this last fall, I had no idea if it would work and to my surprise, it's been a success.  His grades are good.  His teacher's report that he's participating in class and he's interacting with his peers, though he's not making any effort to hang out with any of his new friends.  With my help, Jacob even secured a part-time job at Petco through the school's workability program and his manager reports that he's doing well.   Overall, it's been smooth sailing with no rough patches and he hasn't needed any supports to make this happen.

So what happens when Jacob leaves Culver High?  No IEP team.  No supports from school.  If he gets his diploma in two years like he is on tract to do, he exits the school system and services from the school district end.  

For many parents, they aren't prepared for this.  They've managed to keep their child in school, be it private, public or non-public, and their child has graduated.  So what's next?  College?  Work?  But what if their son or daughter isn't prepared to handle either one?

This is the dilemma that thousands of parents are facing.  Now that I'm with CIP, I hear from them all the time.  Their very bright son attended the local community college, but he dropped out.  He has no problem getting a job, but he's let go with no warning or explanation.  He has no friends and he's lonely.  He's the smartest person they know, but he can't even manage to stay enrolled in one college class or hold a job at the local pet store.  Their child is beyond smart, but they don't have the ability to transition to the next phase of their life.  And whose responsibility is it to find a solution?  The parents.  And they haven't a clue what to do next.

The more I learn, the more impressed I am by CIP.  Last week, I met the staff in the Berkeley program, and each and every one of them are warm, concerned individuals that care deeply about the students.  They get it.  And the students I met were wonderful.  Bright young men and women with so many strengths.  And they were being supported in all areas of their lives so they could overcome their challenges and enhance their strengths.   Each of them will have an opportunity achieve their life's full potential, whatever that may be. One student even told me how CIP was his second change to live a good life.  Music to may ears.  I could only imagine how thrilled his parents are.

So, autism awareness.  There is so much more now than when Jacob was diagnosed in 1997.  That's a good thing.

But the autism awareness for the future for our young adults on the autism spectrum?  We're not quite there.  At least I have a new job that is part of the solution.  And this is something of which I am acutely aware.

When Susan isn't busy getting CIP Long Beach off the ground, being President of the Autism Society of Los Angeles, being Jacob's mom, or hanging out on Facebook, she writes for her blog "Taking the Awe out of Autism".