Thursday, April 28, 2011

The Facts of Autism

Autism Awareness Month has been a whirlwind in our house with 2 short trips, many doctors appointments, and preparation for a much needed vacation. My goal at the beginning of the month was to post an autism fact on Facebook daily but life got crazy and it looks like I will end up posting 15. Below are the facts I posted this month and a little about how these facts impact our family personally.

Fact #1 - 1 in 100 children now have autism.
A friend with an adult son with autism shares that she knew no other families in her area who had a child with autism. I know about 15 families personally who live within 100 miles of us who have at least 1 child with autism (2 families with 2 boys on the spectrum)

Fact #2 - A new case of autism is diagnosed every 20 minutes in the U.S.
I meet families with newly diagnosed children about once a month.

Fact #3 - The autism prevalence rate is increasing by 10-17% per year.
This rising rate is simply scary and shows no signs of leveling off.

Fact #4 - More children will be diagnosed with autism this year than with AIDS, cancer, & diabetes combined.
I am in no way trying to marginalize the suffering and pain associated with these other illnesses, just trying to bring awareness to the magnitude of the issue of autism.

Fact #5 - Lifetime care for an individual with autism is estimated at $3.2 million.

The costs associated with caring for individuals with autism are overwhelming at times. There is a constant battle with insurance to get services covered. When insurance simply won't cover the needed treatments families are torn between doing what they feel their child needs and spending money they often don't have - leading to high levels of debt in the autism community.

Fact #6 - Costs of lifelong care for individuals with autism can be reduced by 2/3 with early diagnosis and treatment.

We have been fortunate to live in a state and an area of that state where intensive early educational intervention services have been covered for Seth under the Home and Community Based Waiver Program - many families dont' have this coverage. Each state has different waiver programs which cover varying therapies, but often have 5-10 year waiting lists.

Fact #7 - Autism is a bio-neurological developmental disability that generally appears before the age of 3.

Autism affects not only the brain, but the body as well. Seth's general health is poor which has impacted his brain development. Seth was treated with antibiotics 10 times in the first 12 months of his life for ear & respiratory infections. Right after his 1st birthday he was very ill for several months - all of these infections and antibiotics, along with other environmental insults contributed to his descent into autism betweeen 15 & 18 months of age.

Fact #8 - Autism impacts the normal development of the brain in the areas of social interaction, communication skills, & cognitive function.

Seth struggles to connect with others in a normal way socially. We constantly work on eye contact which has brought improvements in this area, but it is a continuing struggle for Seth. Seth's communication skills are severely impacted by his autism. At 9 he has no verbal language, but does use some sign language and a computer communication device to express himself. But even these communications are limited to expressing his basic desires for food or toys, and identifying objects in his enviroment that we have taught him one item at a time. Incidental learning of language that is so amazing to watch in typically developing children is completely absent in Seth's life - he has to be taught each item individually. Seth's cognitive functioning is quite impressive if you can get past the communication gap to truly understand what Seth does know. Seth is reading and writing and loves math. Seth has a photographic memory, especially of architectural and infastructure objects such as roadways. (Last weekend on our way home from Chicago we stopped at a tollway oasis - which he drew in detail a few miles after we left the oasis.)

Fact #9 - Autism is diagnosed 4 times more often in boys than in girls. 1 in 70 boys now have autism.

At a conference several years ago we heard a biochemist give a great explanation of this statistic. Testoterone has a synergistic toxicity - meaning that when testoterone is present with brain cells and neurotoxins are introduced brains cells die much faster. Whereas estrogen has a protective effect. When estorgen is present - it protects the brain cells from the neurotoxins.

Fact #10 - Many individuals with autism have sensory impairments which lead to difficulty in processing sensory information such as sights and sounds.

Seth's greatest struggles with sensory issues are around the issues of food textures, bright lights and large groups of people.

Fact #11 - Individuals with autism often suffer from numerous physical ailments which may include: allergies, seizures, digestive disorders, persistent viral infections, sensory integration & sleeping disorders.

Seth has struggled with most of these issues. At the age of 2 1/2 he was diagnosed with many food and inhalant allergies. Up to this point we have not dealt with seizures - but 25% of individuals with autism experience seizures for the first time during puberty so we are unfortunately not out of the woods yet. Seth has struggled with persistent viral issues, has sensory issues, and when he is not on his strict gluten free, casein free diet will not sleep through the night.

Fact #12 - Individuals with autism often exhibit dsyfunctional behaviors such as rocking, hand-flapping, toe-walking, and other repetitive behaviors.

Seth started rocking at around 18 months (our first clue that he had autism) and also engages in toe-walking, visual stimming (similar to hand-flapping), and inists on things being the same.

Fact #13 - The economic impact of autism is $60-$90 billion annually in the U.S. alone - these costs are expected to at least double in the next decade.

With the atronomical rising prevalence rate of autism that just does not seem to be slowing down at all, the longterm economic impact is staggering. Not only will many of these individuals require lifelong care, they will be unable to contribute to society financially, and often greatly impact their families ability to earn a living because their care is so consuming that one parent often has to be at home full-time long-term.

Fact #14 - 20 years ago most individuals with autism were institutionalized. Now there are more flexible living arrangements.

The progress we have made in welcoming people with disabilities into our culture has been wonderful. As the prevalence rate has increased and huge numbers of individuals age out of the education system there is going to a HUGE need for bigger and better flexible living programs to assist families in the care of their adult children with autism. These programs are lacking in many areas of the country and funding is in short supply. This will be a growing issue in the autism community in the coming decade.

Fact #15 - There are 24,000 new cases of autism diagnosed in the U.S. each year.

That number brings tears to my eyes as I think of the families that will be devasated and forever changed. The good news is that there is hope and help available through growing numbers of autism organizations founded by parents seeking a better future for those affected by autism. A family member, a neighbor, a church friend, a co-worker could be the one in your life that receives this life-altering news. Be aware, be educated and do your best to be supportive to those around you that are dealing with autism.

Other autism facts:

  • An estimated 1.5 million Americans live with an autism specturm disorder.

  • 1% of the population of children in the U.S. ages 3 -17 have ASD.

  • Autism is not affected by race, region, or socio-economic status.

  • Autism does not affect life expectancy.

  • One characteristic which is quite common in autism is an insistence on sameness.

  • Some individuals with autism engage in self-injurious behaviors such as head-banging, hand-biting, and hitting.About 50% of individuals with autism have little or no verbal language.

  • About 10% of individuals with autism have savant skills.

  • Early intervention can greatly improve the symptoms of autism.

  • ABA is the leading edcuation treatment recommeded by the Surgeon General & American Academy of Pediatrics. ABA (Applied Behavior Analysis) is a system of teaching desired skills in step-by-step systemactic way through the use of positive reinforcement.

  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases.

As you can see from this information autism is a mammoth issue affecting more and more families. The impacts are not fully understood until you experience it firsthand in your own family. There is a great need for advocacy for the needs of individuals with autism which is often difficult for families to undertake when they are stretched to brink financially, physically, emotionally, and spiritually caring for their child or children with autism. We have been blessed to have good services and wonderful support from friends and family and are now in a place to become more involved in advocacy here in Iowa. Mike & I recently were at the capitol for the Iowa Autism Awareness Day on the Hill and made some great connections with legislators and plan to continue the dialogue with our lawmakers about the needs of the autism community. We feel compelled to become involved in this way at this time for other families who are simply unable to speak for themselves. More champions are needed for these families! You don't have to have an affected child to get involved, just a passion to help those who do!

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