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.


Jeni said...

I have only one problem with this post. Why does a "Czar" for autism have to be a male -a father? A Tsarina could just as easily fill the bill or even a "Grand Tsarina" (grandparent, ya know) for that matter.

It is important to maintain the research as to the possible causes of Autism, certainly but definitely it is of equal if not more importance to try to find ways to help the individuals who have the disorder along with their families who live with the issues -and they often are many, many of them too -daily!
I -like you -do hope and pray that President Obama follows through on this campaign promise as it is most definitely a much needed entity within our governmental system.

Michelle S. said...

I agree Jeni. I doesn't have to be a man, nor do I think they have to have more than one child on the spectrum. But otherwise I agree entirely. I stumbled on your blog today. Wow, six kids on the spectrum. That's incredible! I wish you THE BEST and bless you for trying to make things happen.

Dadof6Autistickids said...

As a guy, I'm feeling that mom does a better job with the ASD child(ren) then Dad. Sure its a partnership, however if one of them is to become the "Czar" I think Dad being gone will cause less stress for the children.

Michelle - I really think that it IS vitally important to have multiple children on the spectrum. He would never get the charge by another parent that he does not understand their situation because he has 'just one' Autistic child.

This Czar must be as much as possible all things to all people. This job would require meetings and trips all over the country.

I'm not saying a woman couldn't do the job, hey I'm too married to get away with that, but what is best for the children?

tiffrutherf said...

Sounds like your interviewing for the position? But you said in your own documentary that you could not concentrate on your job because all you could think about was your child...And your poor wife, she has health issues and to leave her alone with 6 kids with autism?
Also when you said a child would be more effected if the Mom left, YEAH, that's cause she most often deal with the autistic child (that would be the only reason why the kids would be more effect right?) So i do think a women would be JUST as qualified as a man.
I personally don't ever think that we should have "One" person "running" anything. Not everyone agrees on who the "Spokes person" on autism should be. Like even though you have 6 children with autism, there are some parents of autistic children who don't agree with the way you handle things (I've read some mean spirited post). I think whoever this Czar is should not have a vested interest in fame, money, T.V shows or anything of the sourt he/she should not be a high profile person. I would love to see a working family with autism because not everyone can afford to stay home. Someone with the average income with no government support..WE GET NOTHING, no SSI nothing, No grants for programs, no studies cause there's nothing special about your family...I would love to see that person or people on a board. I think your a awesome person, and what you and your wife to is amazing..BUT IF YOU WANNA DO IT..then go for it, at least your trying!!! Shoot for the stars! Just please dont forget us working families who dont get any help for treatments!

Dadof6Autistickids said...

You said "...to leave her alone with 6 kids with autism?" I would not do that, if the President wanted ME to do this, I'd take some of that new salary and hire a live-in nanny. Documented of course ;)

You said "I personally don't ever think that we should have "One" person "running" anything...there are some parents of autistic children who don't agree with the way you handle things..." Other Czar positions have dozens to 100's of staff. This Czar needs to have a board of many advisers. This should include adults on the Autism spectrum. I think the biggest heartburn people have had with how we handle things is a crowded messy home. Once again that nanny in a big home would do the trick.

You said "...there's nothing special about your family...". We have 6 special needs kids, that pretty special! LOL

You said "...Just please don't forget us working families who don't get any help for treatments!... I would not and I'd want the Czar, whoever he or she is, to make that job one. Families are being financially devastated by Autism, that should not be!

We all need that help to insure that our children have a better quality of life. Billions have already been set aside for Autism, it needs to be used wisely where it will do the most good for families, right now.

Kathryn said...

I have to agree, saying the autism czar should be male counts out a lot of well qualified women. And even you stated that it is women who are often the care givers, the ones to deal with the doctors and teachers that are ignorant to what autism is and how it affects the specific children that they deal with.

Causes of autism... I suspect there are many, almost as many as there are children with autism. Many people point at vaccines--they may be a factor for some children, but not all. The research does need to continue so where action can be taken to reduce the incidence of autism in the future, it can be effectively taken.

Like you I agree finding ways to help the individuals and families who deal with autism on a daily basis is of paramount importance. The vast number of responsibilities that the Czar would be so extensive, he/she would need to have some staff, with decision made jointly since not all people dealing with autism agree on the correct course of action.

I'm frustrated by working parents who state that they get "no help" with treatments for the ASD children. That is true for all ASD kids. Treatments for ASD children in families that don't have working parents with private insurance (even if that insurance doesn't cover all treatments) are non-existent. There simply are no providers that accept medicaid.

I may have some ideas to help get the attention of President Obama and Congress on this issue. Let me give it some more thought.

Mom26children said...

I want in on this!!
My qualifications:
1. 5 children with Autism.
2. Over 18 years experience.
3. I am a woman..who multi-tasks
better than a woman?
4. I was a manager in the corporate
world for many years...I managed
a staff at the largest hotel in
5. I successfully manage and mainta
the scheduling of 6 children.
6. Ran a successful daycare, out of my home, while raising 6 children, for over 12 years.
7. I also have media experience,ie;
Good Morning America, USA Today, local news stations, local newspapers, and Extreme Makeover Home Edition.
8. Successful paid blogger on national health blog site...which was recently nominated for a SXSW media award..wish us luck.

I think whomever gets the position should not focus on the cause of Autism mainly, but like Jeni stated, deal with the daily issues of autism.

I wish whomever gets the position alot of luck. There is alot of anger out in the world of Autism. I have been on the receiving end of the anger. I hope the person who gets the position has a very thick skin.

tiffrutherf said...

Ok first To Dadof6: when I said nothing special about your family- if you read what i said was "WE GET NOTHING, no SSI nothing, No grants for programs, no studies cause there's nothing special about your family" ("your" meaning mine, there's not very many studies if there is nothing special about your case...NOT YOURS personally, you said in you documentary you are in a few studies)...
To Kathryn: keep getting frustrated, but i was not speaking on your behalf, I was speaking for WORKING Families, and yes we have a voice to...WE punch the clock sometimes just to get better health care that that you seem to think is just showered on us...Its called sacrifice, EVERY PARENT DOES IT IN SOME WAY. We pay high premiums and my husband does not get to see his children as much as he likes because hes working... So while your AT HOME getting frustrated..My husbands AT WORK frustrated about working a 12 hour shift for the 5th time this week!

Mom26children said...

My family is in the same boat as yours, except we do qualify for SSI for 4 of our children.
My husband works 2 jobs, so I can stay home and care for my family. Yes, he is exhausted, but still finds plenty of time to help me around the house..especially with the laundry.
2 of our children do not qualify for insurance through CHIP, so we pay out of pocket. That takes a big chunk out of our wallet.
I recently started getting paid to blog. I love the company and get paid per blog. Unfortunately, this week has left little time at the computer due to sick kids.
I average 5 to 6 hours of sleep in 24 hours. Our youngest tries to destroy our house, but I refuse to let him ruin this house. He is a full-time job in himself.
I assume the czar will be a very political person in the health industry. I assume they will get the needed responses from parent's on what we want, but will it ever be enough for everybody.
I really do feel sorry for whomever gets the position. They will be dragged across the coals...so to speak.

Anonymous said...

My vote is for Mom26, I think it should definitely be a woman. Also, Dadof6 alot of the "hate mail" or whatever you want to call it is about the house being messy and also no real focus on treatments, structure and the fact you seem to try to make money off of having 6 kids on the spectrum.

Also, there is a fine line between accepting and giving up.... I really felt sorry for your kids when I saw the documentary because it seemed like you gave up. Kids with autism need structure so for you to have 6 on the spectrum you REALLY need structure.

I would not want you to be the "face of autism" because you are not the "norm". This person needs to be able to bring something to the majority of people and as you keep pointing out you are not the majority.

tiffrutherf said...

OH and Dad: I personally saw nothing wrong with your home..and I don't think anyone with children would...I don't think you did anything wrong at any point in the documentary. I am proud that someone is getting the word out! I think you were brave to put yourself out there because people can be cruel. The reason I posted my post was this: I think we have the right to question peoples motives if they are thinking of being a spokes person for any group.. All you can do is give your response and let the people decide. I liked the way you did not attack what I said, but instead you explained yourself. I get what your saying...and I like it!
Like I said if you want to be Czar Rock on!! Just please don't for get about ALL OUR FAMILIES..this seems to happen when people go to D.C!

The Glasers said...

What about families with autism who choose to homeschool? What about autism families who choose developmental approaches to autism rather than behavioral? If someone paid $50,000 a year for a behavioral treatment for my daughter, I would flatly reject it. We find the piddly $5,000 a year developmental based approach far more effective.

In the past two years, my daughter's social skills have progress from that of an infant to that of a toddler: she has learned to read and use facial expressions and other kinds of body language; follow the eye gaze of other people; look to other people for input when unsure, confused, or curious; share joint attention; keep tabs on whether her partner is sharing joint attention; etc. What my state pays a family to do ABA for one year would take care of my RDI consultant fees for ten years!

I am not sure the government needs to be driving all of this. Take autism awareness. Your blog is doing a great service. I only have one child and an adult child at that, BUT I got an article in our newspaper with a positive focus on what can be done about autism. When I speak at homeschool conferences, I cannot help but talk about what we are doing with her. Lots of people that are not directly affected by autism have a better understanding because of that.

Why does there need to be the one blog from the one czar? What if the czar dismisses what I have seen work for my daughter with my very own eyes? Why can't those of us having success with our children continue to mentor and inspire those who wish to be mentored and inspired?

Inclusion. We have always included our daughter in everything. We take our daughter everywhere--church, the store, the library, concerts, travel all over the world, etc. She has never attended one day of school since she left preschool, but she has a rich and inclusive life and people who love her for who she is.

semiveggie said...

I agree with Jeni (and, evidently, a lot of other people) that the czar could very well be a woman. I do applaud Dad of 6 for his thought process: that his leaving the house would be better for the children than his wife's doing so. However, citing his comment in the posting about if you've seen one autistic child you've seen one, I think that is a decision that needs to be made on an individual basis.
I also agree with Michelle, that you don't need to have more than one autistic child on the spectrum to be qualified for this job. Actually, I would say that you probably don't need to have any, as long as you have spent time with children on the autism spectrum, and know what you're looking at/for.
It seems to me that dad of 6 is setting himself up as the best candidate for the job...

Montana said...

On behalf of my mother and parents of autistic children here in the US, I would like to share my gratitude for President Obama's support for an act that would fund qualifying autism treatment programs.

Montana Burr

Dadof6Autistickids said...

semiveggie said... if you've seen one autistic child you've seen one, I think that is a decision that needs to be made on an individual basis.

Decision? I am not following you on what you are trying to say. What I'm saying is each child is totally unique and their level of Autism and their needs requirements are as individual as each person is.

semiveggie said... you don't need to have more than one autistic child on the spectrum to be qualified for this job. Actually, I would say that you probably don't need to have any, as long as you have spent time with children on the autism spectrum, and know what you're looking at/for.

I cannot disagree more. Who knows more about Autistic children then a parent? NO, one. If you just 'spend time' you can go home at night and leave Autism behind. Parents are on the 'job' 24/7.

I'm too busy with my OWN life to be the Czar. But, Autism needs someone who understands the ENTIRE scope of ALL of Autism.

Sorry, ladies. Call me old fashioned or sexist but the best Czar is one that does not have to worry about the children at home. The way to do that is for mom to take care of the children AT HOME.

Unless someone has a better suggestion then Temple Grandin as the only qualified female... I'm all ears.

Anonymous said...

Thank you for this. The part about SSI requirements lightening up for those that "make too much" is huge. We applied and were actually laughed at, physically laughed at. I was told my husband makes more than the person that brought us in. The problem is, her husband works, they have no children, and that means no children with Autism. We have TWO children with special needs (one with Autism and one that's too young for a DX but will probably bee DX'd soon with ASD and already has SPD and developmental delays). I asked them to look at our monthly medical bills and was told that they didn't care about those, only utilities, mortgage, car payment, groceries, and gas. I laughed and said if that's all I had to pay we would be doing fine by anyone's standards. But when you add in therapy, medical bills, surgeries, medicines, and so on, we are so broke that broke is a step up. They just don't care.

Lionel Braithwaite said...

Maybe if you Yanks had voted for Ralph Nader for president or tried to get the Green Party into power, you wouldn't have to worry about how to get get help for your ASD/Special Needs kids. But you keep on voting for the same assholes every four years expecting change-change that will NEVER really come because the GOP & the Dems are corporate business parties with no real concern for the people. Want to get the change you desire? Vote for a progressive party/leader next time!