Tuesday, December 30, 2008

Bringing in the New Year with the Kirton's

I signed up to be notified whenever our latest showing of 'Autism x 6' is going to be on the Discovery Health channel. Yesterday I was doing some Autistic surfing and went to their website.

The program will be on tomorrow night, December 31st at 8pm and 11pm, Eastern time.

So if you like to hang around the house on New Years Eve or, like us, never go much of anywhere anyway. Watch us again or for the first time. I did post a video on YouTube with a January 2009 suprise from the Kirton family. Check it out.


Thursday, December 18, 2008

Easter Seals Doing a Better Job Then Autism Speaks?

There certainly is strong feelings about Autism Speaks (AS) as an organization, both good and bad. I'm glad for all the awareness they create. We're doing as much as that as we can ourselves. But what is AS doing for Mom and Dad Autism?

Many people get pretty heated when it is brought up that AS is putting their money towards research and nice salaries for company executives. Sure research is all well and good, BUT again, what about Mom and Dad? Learning about the causes of Autism are a bit of a moot point for parents financially strapped trying to help their children with Autism. Wouldn't it be nice if some organization was there for parents... NOW?

Easter Seals to the Rescue

Easter Seals has come out with a new study: Living with Autism Study. Here is some information about it:

Autism affects more than 1.5 million Americans and their families. Critical services and supports are needed to raise a child with autism, but they are few and far between.

In cooperation with the Autism Society of America, Easter Seals surveyed over 2,500 parents of children with autism and typically-developing children -- about daily life, relationships, independence, education, housing, employment, finances and health care.

The results gathered from our groundbreaking autism study paint a startling picture of the life-long fears and anxieties people with autism and their families face ... and the disparities among parents of children with autism as compared to parents of typically developing children:

• Nearly 80% are extremely or very concerned about their child’s independence as an adult.
• Only 14% feel that their child will be able to make life decisions.
• Only 17% think their child will make friends.
• They report that they’re “financially drowning,” with concerns for their child’s financial future.

Thanks to the generous support of MassMutual Financial Group, the findings are now available to you. As an Easter Seals national corporate partner and the study sponsor, MassMutual is committed to serving children and adults with autism through its exclusive SpecialCare program, a solution that gives families living with autism and other disabilities access to information, specialists, and financial strategies that can help improve their quality of life.

Millions of families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

Easter Seals will use these findings to raise awareness of and advocate for the life-long services families living with autism desperately need.

Story and how to get the study link


Wow, isn't it about time? I think many were hoping that this is what AS should have been doing years ago. But, finally someone is, Easter Seals. Looking at their website I find that they are like AS and do ask for donations. I'm not sure about the rest of you, but I'm ready to go to an Easter Seals version of Walk for Autism. What do you think?


(Here is a cute Ammon and Mary pictures with Santa, for those who've asked for cute pictures)

Wednesday, December 17, 2008

Holiday Tips for Families with Autism

I've recently discovered the Autism blog on the Easter Seals website. One that you should definitely bookmark. Here's a recent great blog (my comments are in red):

Holiday tips for families with autism

Posted by Beth Finke on December 15th, 2008

The holidays can be an especially difficult time for people with autism. And who can blame them? Changes in routine, different demands, new foods, sounds, textures — what a challenge!

A holiday post on the ABA4Autism or other Neuropsychological Disorders blog offers tips to make the winter holidays better.

1. Try to keep your child in his or her usual routine as much as possible.

2. Sensory over stimulation — the lights, the sounds, the smells, the relatives touching your child — are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet.

3. Some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate. (That's what we do. We haven't decorated in years mainly because of Ammon "The Destroyer" and Sarah "Miss Touchy, Feely, Licky". And because they must knock down the tree we have used a painted tree that a great friend at church made for us)

4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what. (Our nativity scene is one that Emma makes with her Barbies)

5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type “autism toys” in your search engine. (We've been using this website for everything else: http://www.marketamerica.com/6asdkids/)

6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As mentioned above there are web sites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.

7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on the second page of my website. (Do your relatives visit you? The ones that care are too far away and the ones that are close don't come around anymore.)

8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.

9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas. (Autism causes stress?!)

10. And last but not least, realize that you are probably not going to have a perfect food, perfect decorations, and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)

We’re off to Wisconsin this weekend to celebrate an early Christmas with our grown son Gus in his group home. I’ll keep some of these tips (especially the one reminding parents to relax!) in mind.


"Have yourself a Merry little Christmas..." ~ Dad

Tuesday, December 16, 2008

Utah May Mandate Health Insurance for Autism Therapy

By: Heather May
The Salt Lake Tribune (http://www.sltrib.com/ci_11238552)
Updated: 12/15/2008 04:59:59 PM MST

Leeann Whiffen made a promise that when it was over -- two years of intensive therapy to free her son from the grip of autism -- she would do what she could to help other parents afford the same sort of expensive treatment.

The Highland mother says her son, Clay, is now recovered from the disorder that had muted her babbling toddler and traded his peek-a-boo play for obsessions with round shapes and tan foods. Not even his third-grade teacher would know he was once labeled autistic, she said.

But she had to take out a second mortgage on her home and put every expense she could on credit cards to free up $30,000 a year for treatment. Knowing other parents aren't so lucky, Whiffen is working to force Utah health insurance companies to cover autism therapy.

"People need to know these kids can get better," Whiffen said this week. "I can't imagine what life would have been like for him if we wouldn't have been able to do this program."

This fall, over breakfast at Mimi's Cafe, Whiffen and another mother of an autistic child, Brittany Recalde, easily persuaded Sen. Howard Stephenson, R-Draper, to sponsor the bill in the upcoming legislative session.

"It's a draconian society that would knowingly watch children grow past the window of opportunity [for treatment] without [providing] assistance," said Stephenson, who has successfully sponsored an autism treatment bill in the past.

Stephenson said "Clay's Law" is still being drafted, but would include an annual coverage cap, likely around $30,000, and a to-be-determined lifetime cap. It will also require families to contribute.

To receive coverage, the children couldn't be older than 5, since research has shown the most dramatic benefits occur the earlier the treatment starts, Stephenson said.

'Dramatic gains' » Insurers would likely only be required to cover what is known as applied behavior analysis, or ABA therapy. It provides one-on-one treatment for up to 40 hours a week at home, reinforcing communication and appropriate social behavior and discouraging negative behaviors.

Instructors break down skills like following directions and carrying on a conversation. It has been criticized for not helping children form social relationships, but according to the National Institute of Mental Health, ABA is widely accepted as effective.

Claims of an autism cure are controversial. But studies have shown 30 percent to 40 percent of higher-functioning autistic children who receive two years of intense ABA therapy "will be indistinguishable from normal children 10 years down the line," said William Jenson, an educational psychology professor at the University of Utah who supports the bill.

Leann Whiffen, of Highland, is behind an effort to require insurance companies to cover autism therapy like the kind she used for her son, Clay. Clay was diagnosed with autism when he was 2. After two years of expensive therapy (at a cost of $30,000 a year), Clay, now a third-grader, was considered cured.

"They probably still are autistic, but they've made such dramatic gains that you can't distinguish them from other kids," he said.

Other children show gains but still need special-education support, and some don't benefit. Jenson cautioned it is impossible to predict how children will respond.

The bill's emphasis on ABA is based on research by Jenson, who helped start the ABA-focused Carmen B. Pingree School for Children with Autism. He recently analyzed 19 studies published over the past 40 years and found ABA was the only intensive early intervention that provided significant improvement in IQ, language and self-help skills.

"If you waste time in that window from 18 months to 5 years with ineffective therapies, you are probably going to decrease this child's chances in making dramatic gains through adulthood," Jenson said.

Questioning the cost » Supporters expect opposition from proponents of non-ABA treatments. And the Utah Health Insurance Association is worried about cost and effectiveness, said Kelly Atkinson, executive director.

Self-insured companies and the federal government would be excluded, leaving smaller employers to bear the costs, which Atkinson predicted would be "substantial."

Insurers say states should subsidize the therapy as an educational intervention, but also question whether it is proven. Atkinson cites the work of a Brown University professor who notes that the primary study used to tout ABA included only 19 children. The professor also points to research showing other interventions work, even beyond age 5, and to a study showing only up to 4 percent of children will recover.

"We have to see the scientific data that demonstrates that this is a proven successful therapy for the majority of people who participate in it," Atkinson said.

Countering the cost argument, supporters of Arizona's recent similar mandate estimated the monthly price at $1.50 per insured customer. Proponents also argue treated children will need fewer state services in the future.

For Whiffen, there is no question the therapy was worth the money. Between the ages of 2 and 4, Clay spent up to 40 hours a week slowly learning how to talk, play with toys, sit in a chair. A video she shows is striking: In one of his first sessions, Clay lets out a sustained, guttural scream as an instructor tries to get him to place blocks in a bucket. Two years later, he sits calmly at a table, laughing and talking with his instructor about forming a triangle with the markers.

Whiffen, who had wondered if her son would ever know who she was, started noticing a difference earlier.

"He looked me in the eye, called me mom and held out his cup," she said. "It was like seeing him being reborn."


My posted comments to this article:

This bill is a start and we must start somewhere. Three of my children have and do attend the Carmen Pingree school for Autistic children. ABA does work.

With 1 of 150 children having Autism it's not just 'our' problem, Santiago, it's everyone’s.

It's pay now or pay later. And the costs WILL be higher as children with Autism become adults. If you think your insurance rates may be higher with the passing of this bill, just wait 10-15 years if we don't.

Sticking ours heads in the sand won't make this problem go away.

I do have some serious problems with the age limit up to age 5. My youngest is 4. Are we to just throw our hands up and say "Oh well, I guess that's tough luck for us!?"

And this isn't just a Utah problem. It's a national epidemic. In Utah 1 of 94 boys have Autism and we are the 3rd highest in the US. A serious NATIONAL plan MUST be put together... NOW!

If ABA is the only proven method to work let's find some other methods. One method used up to age 5! It's like putting a band aid on a severed arm.

But hey, it's a start.

~ Dad

Tuesday, December 9, 2008

Changing of the Polls

It's way past time to update and record our poll results. If you'd like t0 revisit past polls just find the 'polls' labels on the right side lower on this page.

Poll: Are You Getting The AutismBites T-shirt Newsletter?

Yes 8%
No 21%
Didn't know you had it 77%

I thought a LOT more people who were frequent visitors here knew about the t-shirt newsletter. I was wrong. Hmmmm... Anyway, if you would like to get this newsletter go to the AutismBites t-shirt link: http://www.cafepress.com/autismbites and on the left side at the bottom you will see a sign up for the newsletter. I try to get one out weekly. HA! But usually it's monthly.

Poll: Parents: How's Your Marriage?

Strong 46%
Struggling 33%
On the rocks 12%
Divorced 7%

I was wondering if all the doom and gloom we here about parents of Autistic children having a higher then usual divorce rate was true. With our group... not. Good for us. Some have asked us how we do it. Email us directly and let's chat: autism_bites@yahoo.com

Please participate in our newest poll.


Wednesday, December 3, 2008

Study Shows Families' Financial Strain From Autism

More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.

The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.

A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.

The study appears in December's Pediatrics, being released Monday.

Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.
Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.

Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.

She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.

Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.

Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.

She is divorced — another common casualty, she said, of the challenges of caring for autistic kids.

Story link: http://www.iht.com/articles/ap/2008/12/01/america/MED-Autisms-Costs.php


For we that are parents of children with Austism, this story falls into the catagory of: 'about time others figured this out'. Since we have not had anyone come forward to help with the creation and financing of the AutismBites Foundation (see AutismBites website link for more info:
http://www.autismbites.com/foundation.html) we have come to the conclusion that we will have to do it by ourselves. The process and grants to families in need will unfortunately be much slower, my goal is to start helping families this Spring.