Autism is a pervasive condition that affects every aspect of life. My son Caleb was diagnosed with a moderate form of autism at the age of two and a half and exhibited serious behavioral challenges. Testing revealed his mental age as less than six months. The developmental pediatrician tried to prepare us. They were unsure if his cognitive ability would improve. We were terrified. Safety was a very serious issue and we dealt with a wide range of daily issues. Including constant elopement (wandering), self-injurious acts, constant tantrums, and serious sensory issues. Just to name a few.
As a resident of New York, we were fortunate to receive very intense services at a very young age. From the time of diagnosis, Caleb received classroom instruction, and intense speech five times a week. Occupational therapy was executed to master motor skills and sensory issues. And physical therapy was added to address gross motor skills. And he received all of his services year round. He literally was a million dollar child. The state went to great expense to ensure Caleb had the best outcome possible.
Caleb needed a self-contained classroom for most of his preschool and elementary years. Each class containing no more than eight children. With a special education teacher and an aide. For quite some time Caleb had an additional aide designated just for him.
As time went on and the years flew by, Caleb improved in all areas of development. Each year the classes became larger and he was eventually integrated into blended education classrooms. In 2011 he received the ultimate reward. He walked the stage with his peers to receive his high school diploma with his peers. It was a very emotional event! He had overcome all of the struggles. We were so proud! Little did I know this moment was when our serious struggles were just beginning.
Transitioning services into adulthood is extremely complicated. From Early Intervention, through graduation, all the service systems flowed smoothly into each other. These transitions required little effort from parents. A large majority of parents are not informed that the transition into adulthood is not automatic or smooth. It is filled with multiple evaluations and professionals. As well as multiple systems to incorporate and apply for. The hurdles seem to be endless. It is chaotic and exhausting.
For five years we fell off what is termed as the “service cliff” and received no services at all. A new study showed that one in four individuals with ASD falls off this cliff. No one has researched yet exactly why this happens. I have a pretty good idea because it happened to us.
Caleb struggled without success for two semesters in college. We realized the supports were not available to help him be successful. The college he attended had (at that time) 200 individuals that identified themselves having an autism spectrum disorder. Yet, very little has been incorporated to help provide adequate support for them. The state vocational agency provided very little assistance to help achieve success. Instead, they guided him to a six-month unpaid internship at the local homeless shelter. Caleb really enjoyed this internship and he developed a real passion for the people he interacted with. A strange thing happened. He came alive with excitement and passion! A side of him appeared I had never seen. And it didn’t involve a plot line to a new video game!
Caleb decided that he wanted a career that will connect the needy with local resources. I tried connecting resources to help him achieve his dream of being a college graduate. I failed. With each connection, I hit a wall. Some denials were political in nature and others frankly were based on personal assumptions made by his autism diagnosis. Instead of providing necessary supports for college my son was redirected once again to supported employment to be a greeter at Walmart. After all, society believes because he autistic and not capable of anything else.
I have learned in this journey into adulthood that agencies and government entities use certain terminology to describes their mission and vision. The words self-determination and self-centered planning are used frequently. These terms are defined as:
Developmental Disabilities Act describes self-determination activities as activities that result in individuals with DD, with appropriate assistance, having the opportunity to communicate and make personal decisions; exercise control over the type and intensity of services, supports, the authority to control resources to obtain needed services, supports; opportunities to contribute to their communities; including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”
The New York State Office of People with Developmental Disabilities defines person-centered planning as a process that helps identify desired personal outcomes based on the individual’s life goals, interests, strengths, abilities, desires, and preferences. The process helps to determine the supports and services that the individual needs to work towards to achieve these outcomes and, accordingly, develops a plan that directs the provision of these supports.
Five years after achieving a high school diploma he has not achieved his goal. Each system and resource refuses to assist my son in achieving his dream and fulfilling his passion. As a result, he is retreating back into his own little world. Without a voice, opportunity, or authority that he is entitled to. Regression is very evident. Society and public policy provide a significant barrier. Often preventing individuals from achieving anything productive.
My child used to be happy until he graduated high school. Currently, counseling is needed to battle depression and anxiety. We finally receive some services. Independent living skills, driving lessons, and community integration. He spends his free time (which is most of the time) in his room playing video games. Firmly believing the world has forgotten him. He has been forced to watch his three siblings go on with their lives. Some siblings attended college and others were married. One having to become a mother. And two obtaining very successful jobs. All the while, he is still waiting for the life he desires. Being denied the self-determination and person-centered planning he is entitled to.
This is unacceptable for my child as well as the other high functioning autistic individuals transitioning into adulthood. It is definitely not fiscally responsible for spending a million dollars to not achieve the final goal of independence and self-sufficiency.
I took action and received my Bachelors in Science in Human and Community Services in 2013. I also recently completed my Masters in Public and Social Policy in August 2016. My master’s thesis concentrated on public policies that affect adults on the autism spectrum. These policies were initially designed to help individuals but ultimately ended up inhibiting individuals like my son from achieving success and the life they desire. Other policies chose where these individuals like can work, what kind of training they can receive, what jobs they can obtain, what kind of training they can receive, and even where they can live. Policies like these take away the choices that are afforded everyone else. Adults with ASD are denied the basic right to life, liberty, and the pursuit of happiness that is afforded to everyone else. Apparently, everyone can have it. As long as you don’t have a diagnosis of autism.
It’s time for policies to change. I am determined to ensure it does. All life is valuable. And no one should be forgotten. We must do better!
Source: Renee McAffee – reneemcafee
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