Will the new CDC autism rates make this disease a priority?
By Lisa Ackerman
Back in 1999, I was lost. I didn’t know what autism was. It was a foreign word with a vague reference to the movie Rain Man and a character played by Dustin Hoffman. Back then, when I started searching for answers for my son, Jeff, the rate of autism was 1 in 1,000. Earlier in that same decade, the diagnosis rate was 1 in every 10,000 children.
Since then, the once RARE rate has been updated five more times. Today, we have a new updated figure: 1 in 88 U.S. children are being diagnosed with autism. This is a huge increase in the autism prevalence from 1 in 110 or 1 in 91 figures released just a few years ago.
There are many mornings where I have wanted to pull a “Network RANT” (from the 1976 film Network) “I am madder than hell and I am not gonna take this anymore!” My rant would be: “What does the autism rate need to be for people to care”?
A recent survey of the TACA membership demonstrates that families spend on average over $29,000 out of pocket annually for each child with autism. Some of our TACA families are spending over $100,000 through debt accumulation to help their child. That is a $100,000 that they do not have to help their child. This help comes in variety of forms therapy, schooling, medical intervention and more. All in an effort to provide a child with a chance to lead a “normal” life. Families living with autism are struggling for their basic needs, only to be met with impossible hurdles, funding cuts, and endless waiting lists.
Families are fighting for the truth. Daily we battle the question: “is autism simply being better diagnosed?” Ask any long term school district employee and the answer will be NO, immediately followed by – THERE ARE JUST MORE KIDS WITH AUTISM.
Better diagnosing, better recognition and more screening are simply excuses. We should not accept this as it has been disproven by recent research. The UC Davis MIND Institute authored a study that demonstrates autism is on the rise, it is not about better diagnosis. (1) Recent studies demonstrate environmental factors play an important role in the increase rate of autism. (2)
What will it take for people to ask, WHY is the incidence of autism continuing to increase? When will the help so needed by families living with autism come? These increased statistics should demonstrate autism is not the new normal. It is a condition on the rise and families are struggling. If I was pregnant, I would be concerned – what if my child could wind up with autism? We need to make help for families living with autism a priority, today as well as provide funding for research to find answers for tomorrow.
With this growing rate, if you don’t know someone with an autism diagnosis, you soon will. This a serious issue that will affect everyone’s life, will take its toll on individuals, families, and society. The U.S. can no longer afford to ignore this issue. This matter has become so critical that everyone needs to ask, why is there such a dramatic increase in autism? Even more importantly we need to ask: what are we going to do about it?
Sources:
1) Epidemiology. 2009 Jan; 20(1):84-90. The rise in autism and the role of age at diagnosis. Hertz-Picciotto I, Delwiche L.
Source: Department of Public Health Sciences, University of California, Davis, California 95616, USA. ihp@ucdavis.edu
2) Autism – it is not just the genes
https://tacanowblog.com/2011/07/06/it%e2%80%99s-not-just-the-genes/
The new autism rates full report http://i2.cdn.turner.com/cnn/2012/images/03/29/ss6103.ebook.pdf
Moving Autism Forward by Team TACA 
What it will take for people to care is a total shift of thinking which shifts the focus from dollars/things to the individual, and when society stops viewing our families as “the problem”.
Sadly, we cannot legislate compassion.
The States which are fighting the Affordable Care Act are the same ones which deny Medicaid “waiver” services to disabled children who receive monthly SSI payments, require ICF/MR(ID) level of care 24/7. In WA, DDD clients who rcv SSI and Medicaid are routinely denied “waiver” services, and family support services. The reason given is lack of available funding. The Affordable Care Act changes the “business end”, and assures the reception of Paid Services for the most needy (SSDI/SSI). It is a fair solution to the outrageous governmental behavior which has been allowed to perpetuate due to lack of transperency and the accounting practices of the States.
Disgusted in Seattle, WA.
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My money is still on those damn vaccines. My boy was fine until he took them around 7 mos.
Hi Beth, I am purist. Until the cause is found we cannot rule anything out including unpopular topics like vaccines. There is some research pending and about to be released that will identify subtypes of autism where environmental factors play a role. From that study we can define treatment by subtype and hopefully a plan for prevention. Regardless of the cause we just cannot afford the autism rates to continue. Our kids are counting on us for these answers.
With much respect, Lisa
Hi Lisa, I maintain my perspective. I was there, I know what I observed in my child and what was going on in our lives when I made the observations. I am convinced that the vaccines played a crucial role in my son’s diagnosis. The research is exciting and gives us hope, but the fact remains that I know what I saw. I teach at a highly respected magnet and I’m amazed at the increase in numbers on my campus, particularly among the boys- and I am thrilled to say that the ASD kids shine! The research is encouraging, and God willing a prevention and cure is out there.
Respectfully,
Beth
Lisa, thank you for the strong passion in your voice. I had the same confusion as you and the rest of us. Times were tiring and trying. Full of trials and tribulations. I brought my son Guy back to Australia with me. He is now getting a few services thru Alpha Autism in Melbourne, Australia. I was diagnosed with cancer and had two surgeries. My mother recently died of cancer. I had to put my sons needs aside for a while. But as my healing is improving, and my thoughts clearing, I am once again ready to begin advocating for our needs. The need to be understood. The need for support, especially now that we are all on our own. It was tremendously hard for my sons and myself to give up the tremendous supports we received through the Help Group school. I miss all of you and the friendships we had made. Guy is very sad. He introspects a lot. I know he dearly misses his friends from the school. He is on line a lot with Tristan. Tristan is a great support for Guy. Bless them both. Life is extremely fragile and we need to support each other as best we can.
Kindest regards, Ramute Polikaitis.
I am a parent of a son with autism AND a school district employee. I agree with you 1000%!!!
Jan
Jan – would love for you to blog this topic for TACA 🙂
Lisa
So glad you had this chance to share your thoughts and insights, Lisa. Looking forward to doing what we can to support you and the families.
Pam – I so appreciate everything you do. I will be calling you all in honor of autism ACTION month to discuss next steps. The rumors of the new ASD numbers were around for awhile but nothing prepares you for the vortex of time to respond. I am just grateful folks are asking questions. I hope for families living with autism that questions lead to action and answers.
Thanks for your patience. Lisa
Beautifully written article!!
10 years ago in a school of around 800 students, one child had “autistic like behaviors” and very few agreed. Today in a school of maybe 500 students there are 4 children who possess autistic like behaviors and are undiagnosed. Another 5 have Autism diagnoses. Yes we are thankfully better educated and I do believe that Autism is being better diagnosed, BUT that only accounts for a fraction of the numbers involved in this epidemic. This cannot continue.
I am curious if there are rates of Autism climbing like this in other countries…I am SURE the rate is not as fast…but do we have any numbers on this? I too have worked in the schools & now as a private practice Occupational Therapist, MOST of my clients are autistic so I know ‘identification’ has not improved that much…the rise IS real & not just autism but sensory processing issues! Environment, diet, toxicities, etc. do impact these kids…it is starting to touch EVERY family now (I have 2 nephews who may be on the ‘spectrum’ & my daughter has sensitivities) so pretty soon people will have to look closer at finding answers…thanks for your blog & for informing us!
Hi Shelley,
Autism is climbing in similar rates in other countries i.e. Canada, United Kingdom, etc. The problem is how we count autism not only in the U.S. but also these countries. It varies how survey’s, census counts work. The rate in the U.K. is 1 in 58. That is a census. The rate in the U.S. is 1 in 88 and that is a survey.
I correspond with families all over the globe and the rapid rate of increase leaves these families with little help – just like here in the U.S.