By Lisa Ackerman
The 2nd Annual National Autism Speaks conference took place July 26-27, 2013 (1.) I wrote about it briefly on this blog (2.)
The good news, this conference had several bright spots including; Dr. Sue Swedo, Dr. Alesso Fasano, Dr. Margaret Bauman and Dr. Paul Carbone. Their focus on testing and treatment co-morbid medical issues should be applauded. This was probably one of the first times many of these families were exposed to this type of information. I was glad many new families attending the conference were hearing about gastrointestinal (GI) issues, gluten-free/casein-free diets, sleep issues, seizures, PANDAS (persistent strep infection) and the basic goals of evaluating the patients individually to see how you can best help them. Their resounding comment: Autism is indeed treatable.
The agenda also included Dr. Stephen Shore who discussed what it’s like to grow up with autism. He is a bright light helping to educate families on what is like to have an autism diagnosis. He was readily available to answer parent questions. There were other adults with autism present willing to learn and share. Many of them also suffered from GI and other complex medical issues. They shared horrific stories of not being heard by medical professionals to receive proper treatment. In addition, great care needs to be taken for non verbal/pre-verbal children and adults when it comes to medical care. Many parents understand there are many challenges when caring for complex medical issues when patients cannot tell you how they feel, where it hurts or their specific needs.
Although I believe the conference had many bright spots, it also could have been better in the following areas:
– In the Genetics presentation, it was discussed that over 500 genes have been associated to autism. If environmental research could get 25% of the monies allotted towards genetic funding, we could find answers for testing and treatments a lot sooner. The “gene hunt” has yielded little for the hundreds of millions of dollars already invested. Wouldn’t studying children diagnosed with autism who have regressed and lost skills be more valuable?
– Since 2005, there has been more research on autism than in all the previous years combined. Several of the presenters at the conference brought up older studies from more than 10 years ago.
– There are 17 Autism Treatment Network (ATN) centers and staff, hundreds of Autism Speaks researchers funded by the foundation and close to 2 million individuals living with autism. It would have been great to see a larger number of people attending the conference.
– The conference agenda was equal parts behavior, research and medical topics. Several presentations seemed to offer conflicting advice from one presentation to the next. I felt more standards were in order, conflicting information can be confusing for parents.
Parents of children with autism need to learn and identify possible issues like these and find the right resources to help them. TACA has materials on these issues and types of treatments (3.) We are glad to help families find experienced resources that will look, test and treat common co-morbid issues in autism. The reality is parents must drive this process.
TACA now serves over 34,000 families in the U.S. living with autism. I was excited to hear about the 16 ATN’s established in the U.S. as well as the one in Canada (4.) The question is, how effective have they been in providing proper treatment and following specifics standards of care for individuals with autism? I would love some additional parent feedback on this topic.
I was pleased that many of the treatments we’ve been talking about at TACA for the past 8 years were at last being discussed at the Autism Speaks Conference. I wish these treatments would be available to all families for evaluation with their medical care providers. There are so many parents who are not aware of them or how to proceed. For years, we have heard parents being told that complex medical symptoms being observed are just typical of autism. This is not always the case! My hope is that all families can quickly learn that autism is treatable (5.)
At the conference, Dr. Carbone brought up many great points. Coordinating medical care and therapeutic treatment for kids with autism is overwhelming. He cited that over 60% of families had unmet coordination needs when it came to their child. There are huge gaps in services, management and support for families (6.) At TACA, we see that every day.
I met 55 new families at this conference – they were lost, scared and ready to learn. TACA was there to help families where ever they may be. At TACA, we seek to provide help, information, and a sense of community. We are proud to offer 3 conferences and over 300 parent meetings per year (7.)
It is our sincere desire to open a dialog with Autism Speaks. We wish to be a part of the greater solution for the millions of individuals with autism. I look forward to sharing some of my observations and suggestions with the Autism Speaks leadership team.
7) http://www.realhelpnowconference.com / https://www.tacanow.org/local-chapters/