A chain of events in my life, my observations and research have underscored the need for funds for a population that is going to only grow in the years to come. I'm talking about the ever-growing number of those autistic young people who age out of the school system and out of resources, services and support. I have created a petition to the US government to release funds to each of the 50 states to be allocated to various services for adults with autism in each state. My petition, new and which I am having trouble getting the widget for on this site, should be found at this location:
http://www.change.org/petitions/the-u-s-senate-the-u-s-house-of-representatives-president-obama-release-funds-for-services-for-adults-with-autism-to-each-of-the-50-states#share. And do not just sign it but share it. I have created a Facebook page that should make the petition much more sharable, as it is hard to share from the petition site. If you have a Facebook account, "like" my page at https://www.facebook.com/ChildrenWithAutismBecomeAdultsWithAutism and share the petition from there.
Autism is a lifelong developmental disability that, throughout a person's life span, affects how he or she sees and relates to self, others and the outside world. It isn't a mental illness or a disease that is able to be overcome or cured. Its a neurological (of the brain) disorder whose cause is unknown. So children with autism, even if they are fortunate enough to make great gains through early childhood intervention, usually continue to need resources and support services throughout life in order to avoid falling through the cracks, developing mental health issues, dependency on government assistance when they could find employment, or avoid entering into lives of homelessness or crime because of lack of services. In the US as I'm sure is the case in other developed countries, children and teens under 18 are entitled to diagnostic, treatment and support services. When they reach 18 or 21 (depending on the laws in each state), they are no longer entitled to any of these even though most continue to need these services to be successful in life. And that's true whether they have more severe, classic autism or the higher-functioning subtypes like Asperger's Syndrome or Pervasive Development Syndrome-Not Otherwise Specified (PDD-NOS).
As autism spectrum disorders have always been with us, even though the diagnosis has not, there are many in the "lost generation," many of us whose cluster of challenges would probably had gotten us an autism spectrum diagnosis if we had grown up today. Many in this "lost generation" grew up often being labeled with "personality disorders," or were called "mentally retatrded," "mentally ill," "behaviorally disordered," emotionally disturbed," or other unsavory labels and inappropriate interventions. Still others never received any attention. Today, many in this "lost generation" are suffering in silence, longing for answers as to why our lives have taken the twists and turns that they have. Some adults, even in their 50s and 60s, are fortunate enough to have the money, time and access to resources to get autism evaluations late in life, and find answers and closure. For the most part, professionals like psychologists, psychiatrists, neurologists and other related professionals and autism agencies which serve children and teens, cannot and will not diagnose or treat adults because of a lack of training and research that includes adults in autism research.
In my own life, because our daughter, high-functioning, has been diagnosed with autism, I have, over time, self-diagnosed myself along the spectrum because of my childhood, teen years and adulthood of challenges that could not be explained by the labels I was given when I was growing up. I remain merely self-diagnosed because no professionals in my area feel able to diagnose autism spectrum disorders in adults. Also, it is believed that my biological dad (now deceased), who often had been treated for major mental health issues, probably also had an undiagnosed autism spectrum disorder. Thanks to my daughter and the autism awareness I have gained through her, I probably may never even be self-diagnosed. Yet even with self-diagnosis, not having my suspicions confirmed leaves me with a residue of the feelings of shame, fears, anxiety, frustration, lack of identity and confusion that I had growing up. Only the certainty of an official diagnosis can give answers and give me the feeling of finally letting go. As for our daughter, we have hopes for her future as she is thriving in public school, getting good grades, enjoying life, developing her talents and giving us much joy. But when she ages out of the school system, we know that we can't guarantee her future as autism services for adults are very few in my home state. But even if she should not need such services anymore, many other adults may and they deserve to have access to those services.
A whopping, estimated 70 percent (even higher) of adults on the spectrum are unemployed or underemployed, meaning that they work in jobs that don't use their talents and skills. In so many of these cases, it's because of lack of social skills and life skills. Many of these adults could be channeled into developing businesses of their own because of their interests and talents, with the right supports and resources to make that happen. As it stands now, many of these adults find themselves having to use government assistance, many develop mental health issues and heavily consume the mental health system; still others are homeless or commit crimes, particularly stalking and sex crimes. Many others are vulnerable to becoming crime victims because of their poor social skills. This epidemic affects all of us.
Even if you do not deal with autism in your daily life or have personal connections with it, you probably know people who do. Neither you or your family or society will benefit if such a large population remains a tax burden on society or even commits crimes because of unmet needs; but you will benefit if they get the help they need to contribute to society.
I have tried to get the widget for my petition to make it accessible from this blogspot, but I have not been successful. If any of you knows how I can make this work, feel free to leave a comment. First, sign the petition and then share it. Find the petition right here:
http://www.change.org/petitions/the-u-s-senate-the-u-s-house-of-representatives-president-obama-release-funds-for-services-for-adults-with-autism-to-each-of-the-50-states#share
No comments:
Post a Comment