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.

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

 
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Comments

  • http://www.facebook.com/people/Andrew-Carvin/100001033684440 Andrew Carvin

    Artificial Scarcity occurs when the supply of X is controlled to make it scarce on purpose when the reality is that the supply of X is virtually unlimited. This is usually done to make X worth more than it really is, and thus increase profits for those who are the purveyors of X.

    The easiest example of this is food. Every year millions of tons of food end up in landfills because the stores that bought it were not able to sell it. They rather throw it away to keep food scarce/expensive than give the food to those who need it for free. By doing so they create an artificial scarcity of food.

    The largest example of artificial scarcity is the supply of money. Money is nothing more than metal/paper with fancy pictures on it, and has no intrinsic value accept what we give it. If we are experiencing financial problems we should either print more, or throw the entire concept of money in the garbage.

    How morally bereft do you have to be to openly advocate the needless suffering/deaths of millions of people over the artificial scarcity of metal/paper with fancy pictures on it?

  • http://www.facebook.com/people/Andrew-Carvin/100001033684440 Andrew Carvin

    Artificial scarcity is the main problem, but here’s some additional honesty: It’s more profitable to treat people than to fix them.

    So yeah, during the years autistic people have service you can bet they don’t get any “fix it” service. Pumped with drugs, little to no counseling, and farmed in group homes is what they get instead because that makes MONEY. When they run out of MONEY private health care ceases to give a crap.

    If people were serious about autism, and if it were more profitable to FIX it, you can bet no one over the age of 10 would have autism.

  • Jacob Canfield

    I know that people are over the whole autism and vaccines… but how is it that only one vaccine has ever been truly researched? I mean, if there is a possibility that there is a link, don’t you think they’d look at all the vaccines, and not just the MMR?

    http://www.clinicvitamins.com

  • Jacob Canfield

    I totally agree with you Carvin.  Our system is turned upside down..look at any and all diseases and you’ll see a corrupt system that manages symptoms…not cure them.  I can understand that some patient’s are lazy and don’t follow the doctors recommendation’s, but when we have a fast food restaurant on every other corner and we pump our kids full of vaccines, adderol and who knows what else, the system becomes broken.  

    http://www.clinicvitamins.com