The World Within: Independence for adults with autism



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Posted on December 29, 2009 at 4:59 PM

In a split second photographer Charlie Cutugno captures a rare moment, a moment when the eyes of Alyssa Burnett seem to express hopes and dreams, just like any 22-year-old. 

"She's speaking to you with her eyes which is what she does, it's definitely the eyes," said Barbara Burnett, Alyssa's mom.

The photographs, now hanging in the hall of Barbara and Charlie Burnett's home, showcase their daughter as a beautiful young adult, which she is.

Also true, autism prevents Alyssa from taking care of herself.

"It's hard for people to think of looking at this young lady, you know, that she is really just a toddler and those are what her behaviors are going to be," said Barbara.

Alyssa doesn't live at home anymore. She recently moved to another place nearby her parents bought and set-up for her.

Here, Alyssa receives special care, and so do her three roommates. 

"What we found was that there's not a lot out there, said Barbara. "And that is one of the reasons why we wanted to focus on residential options, not only with the housing, but also you know, daily living."

When Alyssa was younger, there was school and special programs to help her. But, as soon as she turned 21 much of that support went away, leaving the Burnetts frustrated and concerned about their daughter's future.   

"You know, we spend out lives in the first 21 years of their lives getting our children ready to go out in the community, the reality is right now is our community is not ready for children like Alyssa," said Barbara.

Deep love for Alyssa prompted the Burnetts to create a non-profit organization called "Tessera."

First, they set up a group home. Eventually, they hope to develop a community center where adults like Alyssa can experience enriching lives.

One activity that always brings Alyssa joy is interacting with the horses at "Little Bit Therapeutic Riding Center" in Woodinville.

She's been coming here ever since she was 4 years old. It is one of the few activities Alyssa hasn't outgrown.

"And it's one of the constants in her life, the little routine that she has right now , it keeps that, that going," said Barbara.

Alyssa represents a rapidly growing number of adults with autism who have "aged out" of existing services.  

Some individuals, less impaired, will be able to enter work programs. But for Alyssa, the opportunities she's entitled to by law are limited or don't exist at all.

"Our situation certainly isn't unique. There are a lot of other families who are facing the same thing we are living right now," said Barbara.

With little to do outside her home, Alyssa spends a lot of time indoors, constantly stroking a bin full of beans.

"The beans have almost become her whole life," said Barbara. The beans give Alyssa a lot of sensory input. She's happy doing it, but I wish there were more things for Alyssa to do during the day."

Barbara and her husband want a brighter future for their daughter and others like her. Never do they want the light in Alyssa's eyes to grow dim.

"And we want to create an organization that will give Alyssa the life she is entitled to, a life that's filled with love, happiness on her part, have a meaningful life, have purposeful things to do, a life," she said.