Release Funds for Services for All Persons With Autism to Each of the 50 States

I just signed the following petition addressed to: The U.S. Senate, The U.S. Release Funds for Services for Adults With Autism to each of the 50 states. Goal: Allotment of funds to all 50 states for a variety of affordable diagnostic, research and practical support services that, in large part, do not yet exist and shall be oulined a little later in this letter.

House of Representatives, President Obama.

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Release Funds for Services for Adults With Autism to each of the 50 states. Goal: Allotment of funds to all 50 states for a variety of affordable diagnostic, research and practical support services that, in large part, do not yet exist and shall be oulined a little later in this letter.

Currently, a total of $931 million have been allocated to autism. $693 million, not yet appropriated, have been allocated to the Combating Autism Re-Authorization Act, which was signed into law by President Obama in September 20, 2011 (http://www.autismspeaks.org/advocacy/federal). And $238 million have been allocated to autism projects but expired in September 2012 (http://www.autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). We ask that these funds be re-newed, appropriated and then be re-allocated to INCLUDE adults with autism. Under the proposed plan, services for persons with autism, 21 and under, would be strengthened, protected and expanded to include services for adults with autism who are 21 and over.

As a mother of a high-functioning daughter, diagnosed with an autism spectrum disorder and as a person, myself, with what I am convinced is an undiagnosed autism spectrum disorder who is still in search of answers for my life, I am passionate to see funds be released to provide more services of different kinds for adults with autism. When many of us think of autism, the first picture that comes to mind tends to be of a child. There are many, growing funds for a wide variety of autism services for children and teenagers. Enthusiasm is high for early childhood intervention. During the school years, children and teenagers are entitled to a wide variety of special education services. This entitlement ends when they reach the age of majority. After the age of 18, adults with autism and the families who care for them, are pretty much on their own with limited direction, support or resources. Autism, whether we speak of classic, more severe autism or the higher-functioning forms of autism, is a lifelong developmental disability. Even when children are fortunate enough to get early childhood intervention and make strong progress because of it, they do not "outgrow" autism and likely continue to need support services.

For the sake of many autistic children who have or who will "age out" of services they are entitled to, we are requesting that you release funds to each of the 50 states so that many more services will become available to adults with autism, whatever level of their function. According to Lisa Jo Rudy of the About.com (for Autism) website, in the 10 years between 1993 and 2003, there was an 800% increase in the number of US schoolchildren who were diagnosed with an Autism Spectrum Disorder (May 12, 2009). Between this and the fact that man older adults, including myself, are seeking or are being diagnosed later in life with Autism Spectrum Disorders, this population is just increasing. And adults with autism need and we request that funds be sent to all 50 states for:

1) Job-training that is geared to adults with autism. Fully 70 percent (and is estimated to be a whopping 90 percent!) of adults with autism are either not employed or work in jobs that do not use their strengths or talents. This unemployment rate is worse than for any other disability group! Job-training does exist but is not geared to the unique challenges of autism. Autistic adults often lack social skills and independent living skills that are essential to getting and keeping jobs. Many can and should be supported and empowered to work and contribute to society so they need not have to use govenment programs, as many do now. And this is what most of them want!

2) Business loans. Many adults, with or without support, can start their own small businesses; this would empower many adults who would rather work for themselves than others. Such loans are said to be available to those who use government programs like Social Security Disability, but many autistic adults do not qualify for government assistance because they are undiagnosed and have no other documented disabling conditions.

3). More training for psychiatrists, psychologists, neurologists, and others who may diagnose autism spectrum disorders in children and teens but who are untrained to evaluate adults for autism. There are growing numbers of adults, like myself, who grew up with clusters of developmental issues that could not be treated as autism spectrum disorders because the diagnosis did not exist. Professionals in the mental health and related fields, who are qualified to evaluate and treat children and teens, need to receive training to diagnose and treat adults of all ages. This could change the lives of many like myself, who had to grow up feeling robbed of childhoods and proper educations and, worst of all, have been made to feel like "freaks of nature" because our differences never were identified and this can give us the priceless gift of peace, a community of diagnosed persons where we will know the priceless sense of identity and belonging, and possibly open doors for future services.

4) More research which would include adults, especially when exploring the genetics of autism; such research could bring us closer to uncovering what causes autism. Such research can lead to an official diagnosis for some adults or to other positive outcomes.

5) Respite care for caregivers who live with adults with autism. There was a heartbreaking instance of a mother who had killed her adult son with autism. Caregivers whose adult autistic children can't live on their own may be tempted to "snap" and harm, even kill, the autistic person whom they are caring for. Respite care can prevent such tragedies!

6). Home help program that pays personal caregivers who assist certain autistic adults to live idependently in their homes and to assist with life skills like personal care, shopping, medications, doctor's appointments, grooming, eating, feeding, laundry, and toileting.

7) Funds for existing, isolated, services for adults with autism, which are commendable and which normally also serve other adult disability groups. One example of this is the Minnesota State University which serves students with a variety of disabilities and includes services for students with autism; their website is at: http://www.mnsu.edu/dso/faculty/students/asperger.html. Another example is Opportunity Enterprises, a nonprofit which serves people of all ages with developmental disabilities, including autism. Their website can be found at: http://www.oppent.org. I am sure that there are other such services, both at the state level and among nonprofits.

8). Name a federal "autism czar" who will oversee all autism efforts at the federal, state and local efforts and to ensure implementation of exiting and new autism efforts. This would include new services for adults with autism.

9). Implement the ABLE Act which permits creating tax-free 529 accounts for those with autism and other disabilities, letting them save for their futures without losing access to other resources.

10). Implement the Caring For Military Kids With Autism Act which would strengthen autism coverage under the TRICARE insurance program.

We're aware that the budget is tight. But we know that autistic adults, when you also include those of us with suspected/undiagnosed autism spectrum disorders, are a large population. And more and more children will keep "aging out of" services. Then what will happen to them? Most of them will likely experience some degree of failure and unhappiness unless the US government steps in and helps with this population. You will need to decide how to allocate funds for thse purposes and all this will cost more in the beginning. But, in the long run, many dollars can be saved through many more people being put on the tax rolls, people not having to use so many mental health services, and people making contributions to society. All this will help create a more welcoming world for the autism community.

This is a tall order. But these issues confronting families and individuals in the autism community are not going away. Something needs to be done to avert social problems like dependency on government programs, homelessness, and even crime due to undiagnosed/untreated autism in adults or because of lack of services for the many who are already diagnosed. Such support, diagnostic and research services will open up many more jobs, from entry-level to professional. This should stimulate the economy.

We thank you and we commend you for all that is currently being done for children with autism and for most disability groups, of all ages, through your funding and your laws. We only ask that autistic adults be included.

Thank you for considering this serious matter that impacts all of us. Implementing thse measures will cost us all something but, in the end, will richly reward us all through many more contributing to our society, who will benefit from becoming a more welcoming society.

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Sincerely,