See the YouTube video here
President Obama, congratulations on the new job -- hope all is going well so far. I hope and pray that the ‘change’ you want to achieve can be realized, especially regarding, Autism. I know who you are; let me introduce myself. My name is John Kirton and my wife, Robin, and I are the parents of six Autistic children. Yes, that’s right… six children on the Autism Spectrum.
Last year we were in People Magazine, Good Morning America, Inside Edition and Larry King Live. The documentary about our family, Autism x 6, first aired on the Discovery Health channel in October 2008. And was on again this past week. Not quite the media attention you’ve received but we are still working on that. You may ask, what are our goals? To increase the awareness, acceptance and services for people and families affected by Autism.
Let me get to my main point for sending you this message. Last year during the campaign, you said you would appoint an ‘Autism Czar’ to deal proactively with Autism. Mr. President, as a Dad of 6 Autistic children, I’m asking you to please appoint a qualified coordinator—NOW!
What are some of the qualifications that I and most parents of Autistic children are looking for? We need someone who truly, TRULY understands Autism. Not, an academic. Someone who understands the ‘real world’ of Autism. He should be a father of Autistic children, with at least a couple of children on the spectrum. Why is that so important? He needs to have firsthand knowledge to understand parents and their struggle with the emotions and finances of Autism.
When Congress passed the Combating Autism Act they recommended the establishment of an Autism Advisory Board made up of scientists, clinicians, and advocates. Now, it may be all well and good to have an ‘advisory board’ IF Autism was not a National Health Emergency, which it is. There is WAY too much talk and thinking about doing something about Autism. The time for action in NOW — Mr. President!
The Autism Czar position must not be a ‘paper tiger’ this tiger MUST have teeth, BIG teeth – that carries the weight of the President behind it. Funding must not be only, allocated, but available immediately. If we don’t spend the pennies it will take TODAY, it will cost many, many dollars in the future.
Across this nation, State legislators are working on insurance mandates, that aren’t getting out of committees or are watered down. This is not helping families of Autism. We need someone, like you Mr. President, to care about us and our children.
Imagine for a moment that your daughter, Natasha, who is almost the same age as my Sarah, has Autism. Natasha wears diapers, she spends much of her waking hours tearing the sheet rock paper off of the walls in her bedroom. Natasha is only able to talk with guttural sounding words, such a MAAA for Mom or DAAA for Daddy. Many of the times you talk to her, Natasha stares off into space like she doesn’t hear a word you are saying. You worry about her future. Will Natasha be able to carry on a conversation with you one day? Will she fall in love, can she? Will Natasha get married? What will her life by like? Can you imagine this for Natasha? I don’t need to imagine this about my Sarah. This IS her life and I DO, indeed, worry about her future life.
Like the ‘war on terror’ and the ‘war on drugs’, we need a “War on Autism”. Someone with military experience may be a plus.
Some want to discover what causes Autism, however maintaining a focus on the WHY of Autism may cause us to lose sight of what Autistic persons and their families have concerns about as well, like housing, education, employment, quality of life issues and long-term support.
The Autism Czar or coordinator must understand and work on a wide variety of issues and concerns within the Autism community. The following, not in any peculiar order, needs to be on his ‘short’ list.
• Have an Autism Czar for each state
• Each state needs an clearinghouse of information and services
• Dr. training is needed to help them recognize Autism
• Mandating that insurance companies cover Autism treatments
• Overhauling the IDEA program to insure that Individualized Education Plans are actually tailored to the students' particular learning needs, not to the schools needs, beliefs or budget constraints.
• Increase the scope of the IEP to add behavior training and nutritional needs
• Maintain a blog that accepts comments from the public
• Lets expand the availability of services that help Autistic children, such as ABA
• And let funding for research focus on finding more of what will help, not necessarily what caused the Autism
• Many parents believe that they are not getting straight answers on Autism from the CDC, let’s check into that
• Insure that all areas of Autism’s perspectives are addressed, such as
• Biomedical research on causes, treatments, and cures
• Disability services
• Community inclusion
• Education and therapy for self improvement
• And public education for autism acceptance
• Create a coordinated effort for research to prevent duplication or wasting of funds
• Let’s loosen up SSI requirements to include those diagnosed with milder forms of Autism
•And also include SSI for families that (quote) make too much, when you have child with Autism money dries up VERY quickly
• This list just the beginning, the Autism Czar will find a lot more that needs to be addressed
Let these services, treatments and accommodations be available to all Americans, but not be mandatory. If a person with Autism does not want to (quote) be fixed, that needs to be their choice. Personal and parental choice MUST be honored and maintained.
It’s been said that when you see one person with Autism, you’ve seen ONE person with Autism. So again the Czar must have firsthand knowledge of the ranges of Autism in individuals. That is all I have to say for now, however I’d be very happy to meet with you or your staff to discuss in detail some of the points that I’ve brought up.
Thank you for your time and concern, Mr. President, we pray every night that you will help us, and the Autism community. Thank you.