By Lisa Ackerman
TACA was founded in 2000, the same year that the Centers for Disease Control (CDC) created the Autism and Developmental Disabilities Monitoring Network (ADDM) with the intention of initiating an in-depth look at autism prevalence. It felt serendipitous that the same year our organization was formed with the desire to offer hope, help and resources to families with the goal of curbing the already alarming jump in autism, that the CDC would also be establishing their own committee with similar goals. With the government on board, we were going to get answers and we were going to get solutions.
Sadly, answers and solutions have not yet occurred. For the past 19 years, I have had the anguish of watching the rates climb and climb, with no end in sight. In April, an alarming report was released by the ADDM (1) and it concluded:
“In the four sites that participated in Early ADDM Network surveillance in all 3 years, ASD prevalence among children aged 4 years was approximately 40% higher in New Jersey in 2014 than in 2010 and similar across the years in Arizona and Missouri. In Wisconsin, ASD prevalence was significantly higher in 2014 than in 2010.”
The newest report data shows the data trending upwards. Here is the study data:
This survey is focused on 4 year old children. My concern is these are 4 year olds diagnosed with classic (more severe) autism as opposed to what the ADDM study focused on in 8 year olds. (It is important to note there could be as separate blog just on this short paragraph.)
It is also important to note the 4 year old study and the 8 year ADDM studies all come with different methodologies and some with different survey sites. The bottom line is that autism cases are increasing and we can no longer deny it.
This new report is astounding. Autism is now 40% higher in 4 short years! Once again the conclusion is: autism is on the rise. 19 years of recognizing the rise in autism has solved the question to WHAT we’re dealing with. We have a clear epidemic on our hands. However, it has not begun to address the WHY? Even though autism is undeniably more common, we are not better at speeding up the time of diagnosis. The report found: The average age of diagnosis – 53 months – has not changed in 15 years (1.) I would argue we could truly do a better job at an early diagnosis. (2.) We know that if a child is diagnosed and receives treatment early they often enjoy a better outcome including recovery (3.) You can also read more about the survey history and methodology here (4.)
I have shared this before and will share it again: the autism prevalence conducted by the CDC and shared in the ADDM report for 2000-2014 has used ONE autism diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders 4 or DSM 4 for short.
I’ll just leave this CDC ADDM report history graphic here.
So what does this data mean? Maddeningly, for almost 20 years, we at TACA often hear people try to explain away this increase. The common explanations and myths include:
1) It appears we are just better at diagnosing autism.
2) It appears the broadening of the autism diagnostic criteria is the reason for the increase.
The more we focus on these myths, the more time is spent not focusing on factual information that can help families now. Here is an excellent video that addresses these two myths once and for all:
Autism rates are skyrocketing, but why?
Thankfully, those of us who have been sounding the alarm that these rates can no longer be explained solely by genetics, are not alone. We have greatly benefitted from the principle CDC investigator’s efforts since the ADDM inception. That person is Dr Walter Zahorodny. What makes Dr. Zahorodny special is a few things: a) He has been involved in autism prevalence since the beginning, b) He is deeply respected for his work in this area and demonstrates to other sites how to collect and report this important data and c) he shares his concerns with each report.
In this latest finding here (5) is what Dr. Zahorodny has shared:
“It’s very likely that the next time we survey autism among children, the rate will be even higher.”
“Children who are evaluated for autism early – around their second birthday – often respond better to treatment than those who are diagnosed later,” Zahorodny said. “However, it appears that only the most seriously affected children are being evaluated at the crucial time, which can delay access to treatment and special services.”
“Despite our greater awareness, we are not effective yet in early detection,” he said. “Our goal should be systematic, universal screening that pediatricians and other health providers provide at regular visits starting at 18 months to identify autism as soon as possible.”
“These are true influences exerting an effect, but they are not enough to explain the high rate of autism prevalence,” said Zahorodny. “There are still undefined environmental risks that contribute to this significant increase, factors that could affect a child in its development in utero or related to birth complications or to the newborn period. We need more research into non-genetic triggers for autism.”
I applaud Dr. Zahrodny’s persistent and detailed efforts to demonstrate the increase in autism prevalence for almost 20 years. He is lighting the path for us to investigate other methods of causation to explain this epidemic. Now I would like to ask: when will he be listened to? I am hoping for the future of our children, that the time will be now. When the science is speaking, it is our responsibility to listen.
What can we do to take action?
We all worked hard to share the message of awareness of autism as a condition affecting today’s children. It is gratifying that when most hear the word “autism” they have some context to what it means. We can always use more awareness. However, I believe it is paramount that we now shift into a focus of action if we are to prevent the continuing growth in autism prevalence. It is time to begin having open, meaningful discussions about causation, prevention, and treatment. After all, TACA’s goal is for every individual diagnosed with autism to lead an independent life. (6.)
Lastly, I want every parent to know that at TACA, we believe knowledge is power and with that power, we can overcome any challenge that confronts our families. The Autism Cares Act will be up for renewal this year. My hope is that it focuses on what is truly needed by families. Sharing autism facts and our stories are truly the most important tools we have. Finding answers will take this entire community to move autism forward.
- New study https://www.cdc.gov/mmwr/volumes/68/ss/ss6802a1.htm?s_cid=ss6802a1_w
- Autism prevalence history: https://tacanow.org/autism-statistics/
- Autism recovery study by the National Institutes of Health: https://tacanow.org/blog/its-about-the-words-outgrow-autism/
- April 2018 1 in 59 announcement https://tacanowblog.com/2018/04/26/autism-rate-1-in-59-kids-its-time-to-care/
- News story https://neurosciencenews.com/autism-rates-new-jersey-11067/?fbclid=IwAR06iJCmPSf4EwSLM8zRTYpg9rEMfRpwbmz6RUw0SsaLTrxCHWGRKwXf9SA
- TACA mission and vision https://tacanow.org/who-we-are/.
Special thanks to multiple friends who helped with this blog and graphics.