I recently read an article in the Parade Magazine written by Joanne Chen, entitled "Who Will Care For Dana", which told the dilemma of a family whose daughter is turning 21 and faces a difficult future as an autistic adult.
Statistics tell us that 1 in 110 children (1 in 70 boys) born in the U.S. is diagnosed with autism. There are multiple programs that are available nationwide for these children, 14,400 at the moment. Many of these programs are funded through the states and counties. With the average cost of raising an autistic child from birth to 18, at about $3.2 million as compared to the $222,360 it normally takes to raise a child, most parents are at the mercy of their state to help them with this overwhelming expense.
The problem arises when an autistic child turns 21. From this age on there are only 3500 programs nationwide, some of them little more than adult daycare. Many parents put their children on lists for programs a decade or more in advance, in hope that they will claim a space in a program for autistic adults, but even these can be pricey and out of reach for many parents. Fortunately Congress is attempting to pass legislation to help parents with adult autistic children, but at the moment only those with the most severe disabilities are receiving help.
Many parents are stepping up, forming vocational programs, workshops, small businesses and campuses for autistic adults, but these programs are few and far between. With the percentage of children being diagnosed with autism rising 10% - 17% a year, within the next 15 years, 500,000 children will age out of the system and face a world where they cannot find their place. At the moment only 20% of adults with autism are employed and of these, 60% are underemployed or paid below market wages. Though 44% of autistic adults have mild to moderate mental retardation, some have none at all. In the workplace, autistic adults need help such as coaches or aides to guide them and help them develop their skills, but overall they are hard workers with good attitudes who don't mind repetitive work.
I feel like our country is very quickly coming to a point where we will have to make significant changes to accommodate this growing segment of our population. It is up to us to create opportunities for autistic adults to be contributing members of society. With extra money, training and effort, it could be a win-win for everyone.
I found an excellent website that could be used to get information on resources for those with autistic adult family members.
http://www.disability-resource.com/Autism/autism-in-adults.html
My brother is living this dilemma. My nephew, age 18, has aspergers, a type of autism, and he has finished high school on-line. He was not able to function in a regular classroom environment due to his condition. My nephew would be happy to stay in the basement playing video games all day.
ReplyDeleteThe school system is required to provide educational services until my nephew turns 21. The school is working on trying to find some type of vocational rehab program for him. Unfortunately, the school is not being very successful. My nephew is quite intelligent and most of the programs for for individuals with cognitive impairments. In addition, he has some behaviors that can be difficult to manage to include explosive outbursts without warning. This adds to the problems of trying to find some training programs for him.
Parents are left to try and find training or education options for their children or let the children sit at home playing video games by themselves. Adult day care generally does not meet the needs of children with autism. This is very frustrating for everyone involved. The following link discusses some options:
dsp.missouri.edu/Autism/adult%20autism%20&20employment.pdf
Having worked with children with autism, I have seen parents go through this all the time, having trouble finding a place for their adult "child" to be. There is a center that just opened down the road from me that a parent with a special needs child opened up. It will provide long term care kind of like a group home. They are going to have a working farm there, and have the individuals plant and grow food to eat and allow them to sell flowers and such. I thought that this was such a great experience for these individuals - to be able to work and live at a great facility and to know that they will always be taken care of is great.
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