Planning Ahead

It is overwhelming for any parent of autistic children to plan for the future. Where to begin is often the question and sometimes difficult to figure out. I did a lot of research over the summer and found out a lot of things. I found that autistic children have support up to the age of 21 under the Individual with Disabilities Education Act. As a lot of parents with grown autistic adults, that's not always enough. Autistic children and adults don't have the same learning speed as regular individuals do. For instance, you would think that by the age of 30 months, a child would be fully potty trained or at least started on it. Autistic children however often require more time and repetition to learn the skill. Same goes for adults. They often need more time and repetition to learn a new skill or routine.

Let's go over the steps I find is the most helpful.

1. Social Security Disability:       Now I know that people are going to scoff at this one. I would too. In fact, I would probably be the first one to get on the soapbox and preach against using government welfare and how parents need to be responsible for their own kids. However, logic fails on progressive liberals and they want to force people to take money that isn't theirs.
The reason I say you should sign your autistic kids up for Social Security Disability isn't so much for the financial benefit but more for the ease of transition and independence. If your autistic child does not have social security, chances are he can be denied programs that will help him to find jobs and suitable housing. A lot of programs for autistic adults often rely on government funding which usually will pay out more for those already on Social Security Disability and so those programs will require this.

2. Routine, Routine, Routine:         Yes, you worked on this throughout all their childhood life and you really want to relax. This really is vital to the success of the autistic child's adult life. Changes will happen and that routine will have to constantly be relearned. Even if you plan to keep them at home, there will come a point where having them at home won't work anymore unless you plan to stay physically fit forever and all of a sudden become immortal. They need to have some kind of routine or structure in their life to help them to remember to do activities of daily living.

3. Hygiene:            This probably goes along with the routine. Autistic adults need to remember to have good hygiene to promote good health and overall well being.

4. Education:           The Individuals with Disabilities Education Act (IDEA) will cover the college tuition for autistic adults up to the age of 21. By then, you will want your autistic child graduating and with a working degree or trade that will support them throughout their lives. So, it's a good idea to start planning when they're in middle or high school what sort of career they can do that will bring them satisfaction. One way of knowing for sure what they would like to do is to introduce the kids to skills that will lead them to work opportunities such as sewing, cooking, woodworking etc.

That's it for now. I will build upon this as time goes on. The main thing is to understand that even though your autistic child may still be in grade school, the best chances of success later in life is to start planning now and carry those plans to completion which could take years. The more you plan and carry out those plans, the better the chances the autistic adult will have at being self-sustaining.

Transitioning

Over this last summer I took a couple of classes in the community college; English Comp 2 and public speaking. Both classes required a lot of writing. To make my time worth while, I figured that I would do a lot of my research on autism. Since I have 3 boys with autism, I figured it would be good to read up on helping my boys grow into adulthood and into satisfying careers. So, the following is what I wrote.

I am a single mother to 3 boys with autism. I am very proud of them and their achievements as they grow older. When my boys entered my life, autism became my life as well. Like any other parent, I enjoy the time I have with them. However, I am also aware my boys will not stay little forever and I may not be around when they get older too. My boys have special needs and will always require assistance in certain areas of their lives in order to make sense of the world they live in. I have always asked myself, “What would happen to them when I am not around anymore? Who would look after them? What kind of life would they lead?” I am sure that many other parents of autistic children have asked the same question. It is every parents’ worse nightmare to think that their child is in some kind of institution somewhere locked away where they could possibly live alone and miserable. No parent wants that.

            Denise D. Resnik, author of There Is an Autism Epidemic, wrote, “A diagnosis of autism is being made every 20 minutes. The dramatic increase in incidence, from one in 10,000 in the early 1990s to one in 88 today” (Resnik par). Autism will affect everyone, one way or another, in the United States. Whether you have a child with autism, or a family member has a child with autism or you know someone with autistic children, it will in some way affect you. Even if you do not have a child with autism, it can affect you because the problem is growing and if we do not respond to the epidemic of Austim,  the United States will end up with more poverty, and homelessness.  Our current social welfare programs will be overwhelmed as they are unequipped to cope with the rising number of autistic adults.

            Because I have children with autism and I want to find answers for them now rather than later, I have poured over books, looked up answers online and joined support groups for parents of autistic children. I wanted to find viable solutions that not only have long term effects, but will bring to autistic adults a quality of life that allows them to fill the measure of their happiness and make them contributors to society rather than another hopeless charity case. What I have found is that even with autistic adult’s abilities to do jobs and take care of themselves, they still do require assistance. What assistance they need may vary between individuals. In order for the United States to survive this epidemic, we must face the issue, address it with programs specific to autistic adults needs to help them into satisfying careers, and provide ongoing support.

            I know that some people would oppose to programs for autistic adults for various reasons. One is that there are some people who believe that there is no such thing as an autism epidemic. Or they believe that certain people are just capitalizing on autism to create new “wealth” for programs and service providers that gear towards people with autism. Paul Sperry, author of The Autism-Welfare Nexus, concedes that far too many cases are being classified as autism because of a change made in 1994 under the Clinton administration enlarged the definition of autism to include children who were previously thought of as “odd” (Sperry). Sperry states:

A growing body of scientific research has found that the rise in autism diagnoses is not due to a true increase in the increase in the incidence of the cognitive disorder, but rather to a widening of the definition and increased screening by schools and doctors, who are rushing to diagnose and medicate socially awkward or difficult kids. (Sperry par 3)

 There’s no doubt that misdiagnosis do happen, but as a society, we are still learning about autism and what causes it. Not long ago, people did not know autism even existed. Temple Grandin PhD, a leading expert on autism, is autistic herself and wrote in many of her books of when her mother took her to a psychiatrist, Temple’s mother was told the reason for her autism was because sometime during the first year of Temple’s life the mother became aloof or cold towards the baby (Grandin, The Way). That was back in the early 1960s. We have come a long way since learning about what really causes autism and what the symptoms are and why it varies from child to child.  The expansion of the autism disorder was to reach out to all autistic children to ensure they got the help they needed before it would be too late because the sooner we are able to identify a child with autism, the better chances the help we give will ensure that child’s success in adulthood.

Whether anyone wants to face the issue at hand or not, the problem is growing with or without our help. If we do not       do anything about the growing number of autistic adults, we will see our welfare system overwhelmed. According to Autism Insights research paper, The Challenge and Promise of Autism Spectrum Disorders in Adulthood and Aging, autistic adults often do not have support they need to transition them from high school to careers and are often underemployed and living in poverty (Autism par 3). Once an autistic adult leaves high school, the amount of support they previously received drops dramatically leaving the autistic person feeling disoriented and tempted to recluse.

It is very important for autistic adults to have jobs. Temple Grandin wrote in her book, Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism, “Work is more than just a livelihood or paycheck; it is the key to a satisfying and productive life. For many on the autism spectrum, it is the glue that keeps our lives together in an otherwise frustrating and sometimes confusing world” (Grandin, Develping pg5). Even for a normal person, having a job is a means to satisfaction in life. Having a job helps autistic adults have a purpose for their lives, to get out of their homes and interact with the world. It is a way for them to have a schedule so that they remember to take care of themselves and have a quality of life. Or as Grandin would put in in many of her speeches, “It is a way to stretch themselves in order to improve.”  It is a far better plan than to institutionalize them in “human warehouses” or just depend on social welfare to take care of them.

Right now, what we currently have is Individuals with Disabilities Education Act (IDEA) which is an act that was signed into law in 2004(IDEA). As part of the No Child Left Behind Act, IDEA was to ensure that children of autism would be granted education and the government would pay the tuition. IDEA also requires institution of higher learning to assist autistic adults in job placement (IDEA). The only problem with this is that, it serves autistic adults up to the age of 21(IDEA). After that, there are no programs available. After the age of 21, it is then expected that autistic adults simply take care of themselves as any other adults.  It is by this time, if the autistic adult is to succeed, they would have to have everything in place and have a stable, routine schedule they can live by. In an ideal world, that would work every single time. This isn’t an ideal world, and we need a better plan for autistic adults to ensure self-sufficiency. 

In the documentary film by ABC News, A Place in the World: Adults with Autism Finding Their Way, one courageous mother of an autistic adult took it upon herself to provide a program in her hometown where they assist autistic adults in getting jobs and having fulfilling adult lives. This mother worried, as I mentioned, about ensuring quality of life for autistic adults as opposed to “warehousing” them in institutions. She is able to get funding now for the program that has become vital for a number of autistic adults in her community. However, that does not alleviate her fears that a day could come if the funding is cut for the program she runs and if there will be no one there to run the program should anything happen to her. One problem that many programs like this face is those who oppose to giving badly needed funds, claiming that it is a waste of taxpayer money. I do not believe it is a waste if it helps adults to find and keep jobs and give assistance where it is needed to ensure they live as self-sufficiently as possible. The alternative would be to let them live off of welfare, collect food stamps, larger social security disability checks, pay to have them live in an institution or, worse, live on the streets where they could be largely ignored.

Plenty of support is being given to autistic children and adults up to the age of 21. There’s programs and support available to be given to help autistic children transition between childhood to adolescent years and into college. What we need is support for autistic adults to transition them into careers and, if necessary, provide ongoing support. For some severely autistic adults it may be a good idea to be in group homes where they may receive constant supervision but yet maintain some sort of independence. Yet, for some lightly autistic adults, all they may need help with are the interviews to get jobs. 

There are many programs available that help people in general to get jobs and find suitable housing and what have you. The problem comes when it is hit and miss. There are not a lot of research papers or documentation out there about the issue with autistic adults and how we can help them to be self-sufficient as much as possible. Why is this? We give assistance to people who are blind throughout their lives. We give them tools to help them do their jobs all the time. They receive computers specific to their needs, books in braille to read, and even have someone give them rides to work, errands or wherever they need to go. We also give help to those with other handicaps throughout their lives; be it wheelchairs, hearing aids or what have you. Autistic adult is no different. They have needs to assist them throughout their lives and we can do so while maintaining their independence. It would be far better that the government provides help to autistic adults just like they do for the blind, the deaf, and other disabled adults. I would propose that the same organizations that assist other disabled adults be trained to assist autistic adults. That way with the trained social workers, they can assess the needs to each individual and process accordingly. Otherwise, if we don’t get government assistance for autistic adults, we will be left to private individuals to help these autistic adults. While I am not against private organizations or individuals helping autistic adults, I am also aware that not everyone has an immediate need to services for autistic adults and is, therefore, not interested in helping autistic adults. As the mother I mentioned, she too worries because not everyone is aware of he needs of autistic adults and fears for the day her funding is cut or if there’s no one to take over after she leaves.

Works Cited

ABC News. A Place in the World: Adults with Autism Finding Their Way. Films on Demand. Films Media Group, 2005. Web. 9 July 2015.

Autism Insights. Scott D. Wright, Denise E. Brooks, Valerie D’Astous and Temple Grandin. The challenge and promise of Autism spectrum Disorders in Adulthood and Aging: A systematic Review of the Literature (1990 to 2013). Libertas Academica 2013. Web. 16 July 2015.

Grandin, Temple. Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism. Shawnee Mission, KS. Autisms Asperger Publishing Co. 2008

Grandin, Temple. The Way I See It. Arlington, Tex.: Future Horizons, 2011.

Resnik, Denise D. “There Is an Autism Epidemic.” Autism. Ed. Lauri S Scherer. Farmington Hills, MI: Greenhaven Press, 2014. 65-71. Introducing Issues with Opposing Viewpoints. Gale Virtual Reference Library. Web. 9 July 2015     

Sperry, Paul. “The Autism-Welfare Nexus.” Autism. Ed. Lauri S. Scherer. Farmington Hill, MI: Greenhaven Press, 2014. 65-71. Introducing Issues with Opposing Viewpoints. Gale Virtual Reference Library. Web. 9 July 2015.

U.S. Department of Education. Individuals with Disabilities Education Act. 2004. Web 16 July 2015.

Works Consulted

Sicile-Kira, Chantal, Adolescents on the Autism Spectrum. New York; The Berkley Publishing Group, 2006.