By Lisa Ackerman
When a serious developmental disability increases from 1 in every 10,000 US children in 1970 to 1 in 68 in 2015, how should the government respond (1)? One would think perhaps scale up screenings? Increase support? Look into cause and treatments? Sadly, the newest report is the opposite, to put a stop in screening all children. It is the exact opposite of the response autism should receive (2.)
Despite the American Academy of Pediatrics (AAP) recommendation to screen ALL children because “screening is quick, affordable and has no substantial risk” a governmental group, the U.S. Preventive Services Task Force (USPSTF), is trying to quash one of the only ways to get kids into early intervention therapies.
This is what the new president of the AAP stated:
“Early identification and referral for appropriate intervention are critical to ensuring that children with autism have access to effective therapies,” said Sandra Hassink, president of the American Academy of Pediatrics. “Research shows that early intervention can considerably improve children’s long-term development and social behaviors.”
So why slow it down?
It’s not just one group in our government slowing down when it comes to autism. There appear to be others.
That other group is the Interagency Autism Coordinating Committee (IACC). The IACC began in 2006, coordinating all efforts within the Department of Health and Human Services concerning autism spectrum disorder (3.) On this blog we have written about them many times (4.) They were just granted additional funding in 2014, but have yet to organize and meet since September 2014.
This is of much concern for families living with autism and for those suspecting it, it’s even worse. Who will be looking out for your child when it comes to something like autism? Waiting for a parent to suspect, bring up the concern and ask for help is not a good strategy. First time parents may not know what to look for when it comes to concerns regarding autism spectrum disorder.
We need to listen to the AAP and be in front of the diagnostics for many reasons. According to the USPSTF, the message appears to be: Don’t screen. Don’t count. Maybe no one will notice.
I hope they prove me otherwise because our children deserve a stronger, more urgent response. Make your universal autism screening feelings known at http://www.uspreventiveservicestaskforce.org/Page/Document/draft-evidence-review106/autism-spectrum-disorder-in-young-children-screening
And lets ask the IACC what the next steps are for addressing the urgent needs for families living with autism https://iacc.hhs.gov/contacting-iacc/index.shtml
- TACAnowblog IACC articles
By Lisa Ackerman (Original post in May 2012 with updates in July 2015)
In May 2012, new figures were released to highlight a huge increase in the annual autism costs. Autism costs had soared to $137 billion a year (1). This represented a three-fold increase within the last decade. Fast forward 3 years and those costs have skyrocketed to $268 billion annually (2.)
The study made some dire predictions:
“Few US estimates of the economic burden of autism spectrum disorders (ASD) are available and none provide estimates for 2015 and 2025. We forecast annual direct medical, direct non-medical, and productivity costs combined will be $268 billion (range $162–$367 billion; 0.884–2.009 % of GDP) for 2015 and $461 billion (range $276–$1011 billion; 0.982–3.600 % of GDP) for 2025. These 2015 figures are on a par with recent estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed the costs of stroke and hypertension. If the prevalence of ASD continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025.”
If you ask about “who pays for autism?” my answer would be everyone. At TACA, we know many families living with autism are carrying much of these costs. Families put a second mortgage on their homes, sell their homes and move into an apartment or with a relative, take out multiple credit cards, borrow from family members, and often one parent takes on a second job to help make ends meet. Some families have opted to double up households with two families to share expenses and put most of their housing funds into their children. This is an enormous burden to families living with autism.
Since we don’t have a census on autism, we can only estimate that 80% of those living with autism are ages 22 years or younger. This means that we don’t have enough data to calculate the life time costs of autism. Based on what we know today, it is estimated that these costs are $3-5 million per affected individual. Sadly, with these articles highlighting the tripling of costs, we don’t see this trend slowing down anytime soon (4.)
With the downturn in the economy and getting very little relief over the past 8 years, special needs families are being hit hard. Necessary support services are drying up. Support for families is dwindling while the pool of those needing help keeps soaring. Supporting families living with autism has become harder. At TACA we have fewer tools to assist these families than were available just a few years ago.
This is the last paragraph in a recent article featured as a follow up to CBS online news highlighting the soaring cost of autism. It is quite shocking (3):
“The researchers said their best estimate for ASD-related “medical, nonmedical and productivity losses” this year is $268 billion. If more effective treatments aren’t found, researchers estimate the cost of care could go up to $461 billion and possibly up to $1 trillion in 2025.”
Taxpayers don’t know that autism is the least funded disability in the US with an epidemic rise in prevalence in the past 20 years. The numbers continue to increase as well as the costs (4.)
What we don’t know outside of the enormous annual costs is the toll to families, resources and to the individuals living with autism. Those costs are much higher.
Resources for Families:
Who pays for what services: http://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
Health insurance coverage http://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
Autism on public assistance http://www.tacanow.org/family-resources/autism-on-public-assistance/
By Lisa Ackerman
There are many days I miss Dr. Bernard Rimland. This week is no exception.
He is a true pioneer for families living with autism. If you are not familiar with dear Bernie, please read his tribute (1.) He was a great man.
In my office is a treasure sent to me from Steve Edelson not long after Bernie died in 2006. When I call it a treasure it is. This is a picture of Bernie’s last speech at the 10th anniversary of the DAN conference.
Here is the text (please note there are two words I could not read his handwriting. Even with those mistakes you will see a great man and his lifes work.)
Welcome to our 10th Anniversary DAN Conference!
All DAN conferences are special occasions as you can tell by the excitement, the enthusiasm and the optimism they generate. But this conference is extra special for several reasons.
One reason is that 2005 marks the 10th Anniversary of that DAN! Meeting (actually a think-tank rather than a full conference) at a hotel at the Dallas airport where we convinced a handpicked group of 30 people—26 research scientists and physicians and four non-scientist non physician parents to formulate an agenda to Defeat Autism Now! Two attendees were from Europe, Karl Reichelt (Norway) and Paul Shattuck (UK). The rest were from the U.S. We insisted on an exclamation point (!) after the Now! Because we wanted to make sure that we meant “Now!” and not “someday” which is all that the rest of the world hoped for.
One of the invitees Dr. Sudhir Gupta had already recovered an autistic child, Cindy Goldenberg’s son with Intravenous immunoglobulin (IVIG). Cindy had wonderful before and after videotapes of her son, so there was no doubt that he had been autistic and was now well. That whilted our opportunities- recovery was not an impossibility as the medical established world had us believe.
A major outcome of our 1995 DAN! Meeting was a Consensus Report, authored by my esteemed colleagues Sid Baker and John Pangborn. That 38 Page “Clinical Options Manual” (unfortunately misnamed “Protocol”- it is not a protocol) has gone through 7 revisions, the 2002 version encompassing 244 pages.
This conference is especially special for another reason; beyond its being DANS! 10th birthday; This is the first meeting after our historic October 2004 conference in Los Angeles at which, for the first time in history, a group of recovered autistic children were introduced to an audience in 10 years as a direct consequence of our first DAN! Meeting in 1995. The one autistic child successfully treated by Dr Gupta has grown too many hundreds and the number of recoveries is increasing every day. Soon it will be 10’s of thousands and before too long, autism will be history. I can’t wait!
Let’s Get Going!
His letter is inspiring. He had been hard at work in the autism field since his son was diagnosed in 1958. He started both the Autism Research Institute and Autism Society of America in 1965. I met him in 2000 and his energy and drive to make a difference for the autism community NEVER wavered.
He was so wise, so hopeful and such a bright light.
I look at this letter and know it is more important than ever to continue forward. That’s what Bernie would do. But God I miss him.
By Lisa Ackerman
We shared this article in June 2014. Each summer we need to share this information again. The reason why: in less than 10 days 8 children with autism ages 5-26 have wandered from a safe environment and died.
Please read and share. You never know the life you may save.
============================== Original article
For many families summer is filled with fun activities, vacations and almost always involves WATER! This sounds fun. And it is fun! I have fond memories of summer time shenanigans with my family and friends.
For families living with autism the summer season can be the exact opposite of fun. It can become a giant nightmare. Services and routines are turned upside down. Children with autism can get frustrated without the structure and support school time provides.
Sadly some individuals with autism wander from safe environments. This often occurs during the summer months. Many children living with autism can have the cognitive functioning of a toddler but have the size of a child that should certainly know better. But they don’t, they have autism.
The statistics are sobering, 49% of the kids with autism wander (1) and sometimes with deadly consequences. Forty (40%) of those with autism cannot speak which can make finding them even more difficult. Many are often scared of bright lights, sounds and any commotion around them. They are afraid of the sounds and people there to help them.
Sadly, we know when summer is coming the stories in the news increase. We know from the type of news stories we start hearing about. In a short five weeks, 10 children with autism have wandered and unfortunately died from drowning (2.) 10 children have died in 5 weeks. (This statistic is from May-June 2014.) What is sobering is there are probably more cases. These are only the cases we do know in the news.
I have written about this before (3.) The names and faces of these beautiful kids are burned into my head. I am so heartbroken for their families.
We encourage families to try their very best to keep kids busy during the summer months. Provide them with a detailed schedule of activities. If you are going to the pool or lake, make sure there is continuous supervision provided by more than one person who is familiar with your child.
Here are some other ideas to help:
Ideas to keep kids with autism busy during summer: http://www.tacanow.org/family-resources/during-summer-months/
Our incredible friends at the National Autism Association have done a wonderful job of providing families very useful information to hopefully keep their kids with autism safe at all times. They offer a great tool kit to help families (4.)
In the news, we have seen an average of 3 children with autism wander each month. That number tends to run higher May thru October. What about the ones that don’t make the news? The close calls? Losing a beautiful child is a tragic outcome no one should have to experience. Families living with autism worry about this daily.
I hope you now understand why we fight so hard for our kids. We like kids. No, we love these kids. We fight for therapy, medical intervention and understanding because if they get away from us just for one second, tragedy can ensue. We work hard hoping that someday our kids will understand safety and not need to be closely guarded. Our communities must understand we are loving parents living under extraordinary circumstances. It takes a village to protect some of these children. They shouldn’t face such tragic circumstances. They deserve to reach their full potential.
(Please share this blog with other families living with autism. It could save a life.)
- Big Red Safety Box from National Autism Association: www.autismsafety.org
By Jacqueline Garza
Hi I am a TACA mom and I have an amazing, incredible 9 year old superhero son named Mason. Mason began receiving early intervention at 17 months and was formally diagnosed with autism at 2.5 years old.
In April 2014, Mason participated in Volcom Autism Awareness Day brought to us through TACA Orange County. His Volcom volunteer whose name, Harris, he remembers to this day, and the experience in general has had a tremendous influence on his life ever since.
Since that day Mason has continuously skated 20 plus hours a week. His energy and enthusiasm that can sometimes be overwhelming on a playground is appropriate and even inspirational at the skate park.
He has had the chance to meet some pretty famous skaters (Omar Hassan was so inspired by Mason at the skate park that he took the wheels off of his personal deck and gifted it to him right there in the parking lot) but more importantly has gained the respect of his peers at the skate park.
Skating has allowed him to channel the hyper focus and sometimes obsessive components of his autism and turned them into a drive and determination to be the best skateboarder he can possibly be.
He has gone from needing hand over hand balance help from Harris to skating 11 ft pools. Many times he is the best skater at the park. This has transpired in just one year. Through skating, we have seen exponential gains in his self-esteem and desire to be physically active. Under a helmet and on a board, he can be anyone he wants to be.
I wanted to say thank you to companies like Volcom for their continued support of the autism community. Their support for a community event changed my son’s life for the better.
With the huge rise in occurrence of autism we have to find opportunities that inspires and help our kids. I never guessed this one family outing would affect our family is such a positive way. Volcom’s assistance in helping our children “up their cool game” is a gift that will combat bullying, depression, and low self-esteem in the future.
And special thanks to TACA. From the first time I viewed your website when my son was 15 months old to find the “warning signs” & to the opportunity gifted to him at age 9 your organization has truly supported our family for almost a decade and we are forever grateful for what you do. I am grateful I have a community of support for Mason and I am excited for his future.
Editors note: special thanks to Volcom for hosting TACA for four years of skating fun for families living with autism. Many kids like Mason are experiencing skating for the first time because of their support of TACA. We greatly appreciate their years of support and dedication to TACA’s mission.
To see more pictures from the April 2015 event hosted by Volcom, please see:
by Lisa Ackerman
My 15th autism awareness year has come to a conclusion. I have experienced 15 of these months asking for the same efforts – awareness. With the numbers now being 1 in 68 (1), I would love to meet someone that is not aware or affected by autism and the toll it takes on a family – especially the individual living with the challenges. It would be refreshing to have a conversation that does not involve autism. But I don’t know anyone that isn’t somehow involved in this topic.
After 10 years of awareness, TACA switched our words to ACTION in our communications and efforts (2). We have never looked back. We can no longer choose awareness as a strategy when it comes to autism.
Thankfully, much ACTION occurred in April that will make a big difference for families living with autism. Hundreds took action to help TACA deliver our mission to families who need our help. We applaud and appreciate everyone’s assistance; TACA’s efforts are a drop in the bucket based on what is needed by so many. Families living with autism are struggling more than ever before. During hard economic times, the small resources that were available have decreased in the past three years. For many, TACA is their only lifeline. As a community, we need to do more for these families and their children.
Autism will affect every tax payer. The current annual autism costs are $137 billion a year with no end in sight (3.) As we move into May, know this – our children are still affected by autism. We are painfully aware. The families TACA serve still need help. We thank you in advance for taking action to help so many families in need.