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SARRC and Aging with Autism

This post is by Denise D. Resnik, Co-Founder, Southwest Autism Research & Resource Center (SARRC)

Next month, our daughter Ally is graduating from college at the top of her class.  She’s determined her career path, lined up a job and plans to head to rabbinical school. 

Next year, our son Matthew, who has autism, will graduate from high school just before his 22nd birthday. His adult life is not as clearly defined.  What will he do? Where can he work?  How can we best support him?

There are times I think we could just sequester this sweet, innocent young man in our home and protect him. We could continue enjoying his playful spirit, stanzas from Zippity Do Dah first thing in the morning and his cold feet in the middle of the night when he occasionally jumps in our bed because he wants to snuggle.  But we know that’s not going to be best for Matt’s continued growth and development. 

Last year, my husband, Rob, and I analyzed all the areas where Matt needs to progress and the life skills he needs in his transition to adulthood.  The list was daunting.

Through SARRC’s Pilot Parent Training and Transition Program for Adults, we prioritized our many objectives and began working on a few, two of which include dressing and diet.

It’s not easy to help develop those skills in Matt.  Concepts are difficult for him to understand--like why you take off the sweater you left home with in the morning when the temperature spikes to 90 degrees during the afternoon.  His acute sensory system and healthy gag reflux have also made meal times a challenging concern his entire life.  His self-restricted diet includes only a half dozen nutritious foods.

Thanks to the SARRC team working with Rob, Matt’s continuing to learn and progress and so are we.  Rob recognized Matt’s fascination with the technology and has incorporated it every step of the way.  Consider:

  • Matt loads his entire monthly and daily schedules on the iPad.  We believe he may enjoy checking things off his list more often than actually doing the “things.”
  • Before bed, Matt now checks his Weather app.  The forecast is applied to a chart in his room directing him whether to wear short sleeves or long pants the next day.
  • And, my personal favorite is Snack Scrabble.  Matt is eating one newly introduced food item during a iPad Scrabble match, which he’s learned to chew and swallow before his next turn.  Last week when I came home from work, the big news in our house was that Matt ate 9 kernels of corn!

Consider there are 500,000 children with autism who will be entering adulthood within the decade and parents everywhere working hard to transition their kids when the school bus stops coming.  It costs $3.2 million to support just one individual with autism throughout their lifetime.  Now, consider the increased incidence of 1:88 and the numbers are staggering.  And when you’re a family member and you’re kid is the “1,” the price is immeasurable.

As our kids reach adulthood, the issues become even more complex.  Fewer government supports.  Disconnected services and systems.  Longitudinal studies indicate that in the absence of appropriate intervention, many adults lose their skills.  I think about all the hours and associated costs of early intervention, and know we cannot afford to allow our kids to slide backwards.

In some ways it feels like we are today with adult services where we were 20 years ago with early intervention. There are fewer choices, little research and more questions than answers.

Fortunately, SARRC is making important advancements, on behalf of kids young and old.  Consider our Good DeedWorks® program, where we have 225 teens volunteering in more than 30 non-profits across the Valley.  They’re learning work skills, building resumes, making friends and helping this community understand the value and productivity of individuals on the spectrum.   Program participants, who include young adults with autism and peer mentors from many Valley high schools, have contributed more than 30,000 hours of volunteer service in SARRC’s Employment Services program is boasting exciting results as well.  Nearly 100 individuals with autism are now gainfully employed thanks to SARRC’s training programs, job coaches and local businesses willing to give our adults a chance to succeed.

One of my favorite examples involves Frank. He works the late-night shift from 6 p.m. to 6 a.m. at Alliance Beverage.  He’s the first to arrive, the last to leave and one of the hardest-working men on that shift. We also understand from management that he’s changed the culture of that shift-- for the better!  Individuals with autism and those who are more vulnerable can bring out kindness, a more supportive culture and the best in all of us. 

We need to do much more. We need to open more doors for more adults now looking for jobs.  We need to engage those unable to work in a competitive environment in other productive ways that increase their skills, boost their confidence and allow them to contribute to the fabric of our community.  And we need to expand SARRC’s social enterprises to create those opportunities and sustainability for SARRC’s vocational programs. 

Beneficial Beans® illustrates one of SARRC’s social enterprises.  This special blend of coffee is roasted, sorted and packaged by adults with autism.   It’s available for sale on-line (www.culinaryworks.org/beneficial_beans.html)

and will soon be sold on the shelves of Arizona’s Wal-Mart stores.

We know the best way to change the unhappy statistics for adults on the spectrum is to lead by example, demonstrate success and keep growing up with our kids, which is paramount at SARRC and our partners at Autism Speaks and Advancing Futures for Adults with Autism.

Rob and I continue working on that long list of objectives that includes more parent training, tracking and communications systems, and making sure Matt can master his use of a cell phone for talking, not just dialing.   For all three of us, it comes down to a well-defined and detailed plan, trusted support systems and, at some point, letting go.

In thinking about our future, we as parents and family members need to stay connected and be assured we did our absolute best to prepare our kids to be productive, working members of our society---to have friends, jobs, homes and communities that appreciate and value them.  We need to be assured plans are in place to take care of our adult children when we’re no longer able to do so.  And in our lifetimes we need to be able to experience Matt’s new home and new life, and know we’ve done our very best.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.