Monday, March 30, 2009

Autism X 6 and Other Media Appearances

Mark your calendar for April 6. Unlocking Autism will be on that day, click here for times. Our producers did a great job again. This documentary shows four families that have children with Autism. You will see our family as the last profiled. That will be followed by our documentary, Autism X 6. For those times click here.

I was interviewed a few months ago and this article came out this past Sunday across the US in American Profile.


Sunday, March 15, 2009

Utah Lawmakers Say No to Autistic Kids

Thousands of parents made the trek to the State Capital building many times over the past couple of months. They attended the announcement, committee and floor votes for Clay’s Law. Just what was this landmark proposal? During the past legislative session parents were hoping to get financial relief for treating their Autistic child. What we they asking for? Large grants for experimental treatment methods? No. Did they want a free gift from taxpayers for unproven therapies? Nope. Parents just wanted their insurance companies to provide coverage for early intensive behavioral intervention for children with Autism. Interventions that were already known to be the most effective methods to help these affected children.

But, the costs would way too much for policy holders that may never need these services, opponents claimed. This proposal would have resulted in a less than 1% increase in insurance premiums. The ‘big money’ fact to consider is this: Untreated autism is estimated to cost approximately $3 million over the person’s lifetime. Intensive early behavioral intervention, the type covered by the bill, can cut this down by $1 million. That means the bill could pay for itself with the savings from just three or four children. With 1 of 79 boys in Utah receiving an Autism diagnosis the long term savings would have been tremendous.

So what will they be getting? An option to purchase a ‘rider’ type of policy before the child reaches 3 months of age. Not much help because of the fact that the average ‘severely’ Autistic child is not diagnosed until 18 – 24 months. What about the parents of children who already have an Autism diagnosis? Nothing. Chalk up another one for the insurance companies who seem to be better at taking care of themselves lately.


Tuesday, March 10, 2009

President Obama, Autism ‘Change’ I’m Looking For

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
• Accessibility
• 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.

Wednesday, March 4, 2009

Autism Opinions and Noses, Everybody Has One

Now it's Schizophrenia. The bad thing about research is for every 'study' that supports one set of views, there are three others that support an opposite conclusion. Autism? It's the water, bad parenting, vaccinations, genetics, heavy metals, pollution, preservatives, etc.. etc., etc...

As the Dad of six children with Autism I'm more concerned with research that can help the Autistic person to have a more full life. Research to uncover the best in education, social training, nutrition and treatments. Some funding spent on 'why' is acceptable, but the bulk needs to be addressing the here and now and plan for the future.

Funding for Autism research is good, funding to help with day to day living, is better.

Autism is a spectrum disorder, caused by a spectrum of reasons, needing a spectrum of treatments and a spectrum of funding. (Spectrum: A broad sequence or range of related qualities, ideas, or activities).

Our country must get moving to discover what can be done improve this situation. If every parent of Autism will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.