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A generation with autism, graduating into the unknown

Max Graye graduated from high school this year in Cresskill, N.J. Graduation is a major step toward independence for most young adults but not for Max. Because he has autism, his parents anticipate having a greater level of involvement in his life than before their son’s graduation. Max and his family are pioneers of a generation in which, over the next decade, an unprecedented half a million children with autism will reach adulthood, as estimated by Dr. Peter Gerhardt, Ph.D., director of the McCarton School for autistic kids in New York City. Their needs will swamp the already strained and dwindling state services, placing an even greater burden on families.

There is a common saying in the autistic community that when you have met one person with autism, you have met one person with autism. Max falls somewhere in the middle on the autism spectrum, according to his mother. “If you look at it as a developmental delay,” said Faye Graye, “maybe Max, who is 21, is functioning as a 10-year-old now.” Although some people on the higher functioning end of the spectrum may be able to live independently, Max’s parents do not expect him ever to live on his own. They also cannot afford the tens of thousands of dollars per year it would cost for a private group home for Max. Max’s younger sister Lisa is prepared to be his primary caregiver, if the state cannot provide him with appropriate government placement into residential care by the time his parents are gone.

Key services may disappear for Max this year. The Individuals with Disabilities Education Act (IDEA) requires that states provide children ages 3 to 21 with support services necessary for the child’s public education. These services may include special education, subsidized housing, transportation and life skills coaching. Some or all of these services can disappear once the person turns 22. Regular routine is important for people with autism, so any disruptions in services may jeopardize their progress and add extra emotional stress for the families.

There are no federal mandates for services for adults with autism. Lack of funding or access to services often places parents in tough situations. Many families supplement these state services with what they can afford on their own. Max Graye is one of the lucky ones. He was placed into a government-funded day program at the same school he graduated from; but there’s a catch — the facility is under construction and may not open until after September. He is going to camp for the summer but come fall, his mother will have to reduce her hours at work to care for Max.

Need to Know attended Max’s graduation party to speak with his family about this time of transition.

To learn more, Alison Stewart also asked Dr. Alexander Kolevzon from the Seaver Autism Center at Mount Sinai School of Medicine in New York City, about the kinds of challenges hundreds of thousands of families will be experiencing in the coming years when their autistic children transition into adulthood.

For more in-depth Need to Know coverage on autism, tune in this Friday when we profile two families doing their best to provide a safe and happy life for their adult children with autism, one of the most common developmental disabilities affecting 1.5 million Americans.

To help navigate this transition, Autism Speaks created a free Transition Tool Kit to help parents and their children with autism.

And for more information about adults with autism, visit the Daniel Jordan Fiddle Foundation.

Peter Bell on advocating for adults with autism
Losing the safety net: Adults with autism
Coming of age with autism
When care runs out