Autism Speaks 2nd Annual National Conference – Part 2

By Lisa Ackerman

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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.

References:
1) http://www.autismspeaks.org/national-conference/2013-national-conference-families-professionals/conferenceschedule
2) https://tacanowblog.com/2013/07/27/autism-speaks-2nd-annual-national-conference/
3) https://www.tacanow.org/tag/medical/
4) http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
5) https://www.tacanow.org/family-resources/aap-standards-of-care/
6) http://www.autismspeaks.org/science/science-news/parents-providers-collaborate-build-better-autism-medical-home
7) http://www.realhelpnowconference.com / https://www.tacanow.org/local-chapters/

36 Comments Add yours

  1. Thank you Lisa for representing TACA as you always do. . .with love for the families affected.

    Send any MA families my way!

  2. Ali says:

    Great post!

    There is more that unites us than divides us. JFK

    Coming together is a beginning; keeping together is progress; working together is success.
    Henry Ford

  3. There will most likely be a part 3, 4 and beyond to this blog. I look forward to making things better with families and helping that process along . ~ Lisa

  4. Alison says:

    After my son regressed, we were admitted to the hospital for testing. We left armed with a lot of medical information but no path to treatment. ATN was within driving distance but we already had received a similar workup at CNMC. We visited four different hospitals/specialists within driving distance to get assistance with neurology, immunology, infectious disease, gastroenterology, and developmental pediatrics. Our MAPS physician now helps and supports our family as we navigate autism. We need more trained physicians to look at our child’s autism and other co-morbid conditions to help them feel better. After gastro, seizure, and immune support, our son is feeling better, more engaged, and happy again.

    The practice of medicine requires dialogue between doctors and patients. Diagnosis and care are driven by patient input. The non-verbal ASD population cannot participate in this process. As parents, we are doing our best to help identify medical issues but we need help. We need the medical community to help us rule out issues and see past the single diagnosis of Autism. With the right medical support, our kids with autism who have co-morbid conditions improve.

    1. Melina Byrne says:

      Well said Alison! Now, we have to keep repeating it, until we are heard.
      Lisa, excellent blog; excellent outreach.

  5. Malia says:

    Did know about ATN, but closest one is 2000+ miles away. No centers in Hawaii

  6. Casandra says:

    I had no idea what an ATN was and am surprised to find out that I have been to one (KKI) from the beginning.
    My middle son was diagnosed by them with developmental testing. We did a bit of blood work (fragile X and a few others). I described how my child was typical at his 2 year visit and how he regressed but they missed major physiological symptoms and didn’t test for them.
    9 months later when I brought my youngest child to them telling them he was losing skills they dismissed me saying I was paranoid. 3 weeks later he’d lost all sorts of skills (waving, clapping, pointing, talking, the ability to chew…) Only then did they test for mitochondrial disease. He came up positive. We brought in his brother and he did too.
    They acquired mito disease from an attack on their immune system from environmental toxins and the mito disease manifest itself in autistic like tendencies.
    Totally missed it…

    At the same time we enrolled in a number of studies. I was asked to leave a study because my child was skewing the results.

    My pharmacist pulled me aside and asked me what study we were in at KKI for mito disease because the cocktails were extremely different from other mito children. When I looked further they were more interested in collecting data on my boys than stopping the regression. Once I found a doctor to place them on the proper mito cocktail they became stable and it wasn’t through an ATN.

    They never tested for my children’s GI issues. They stopped at mito disease. When I finally got my children scoped they had ulcers all through out the GI trac. My youngest had ulcers in his throat. Totally missed it….

    They never checked allergies. They never tested for stroke or seizures even when symptoms were present.

    The icing on the cake is that every time I try to put my children in the “autism friendly” play room they get kicked out!! The one place that is supposed to be autism friendly!

  7. Jen says:

    Had never heard of ATN centers before… Or son is 10 and received his diagnosis about 8 years ago.

    1. Jen – I get the feeling a lot of families living with autism don’t know ATN’s exist. I would love to know from more families – a) Are they aware of ATN? b) Have they been to one and were they helpful for defining therapies AND medical treatments?

  8. Janice Kern says:

    Until I read this blog, I had never heard of ATNs. Even after reading this blog, I had to ask several autism moms before I could figure it out. I hope this is something that just started a month ago. If I find out there were families I knew who could have accessed care months ago in their area, I will be disappointed.

  9. I have never heard about ATN until this blog post.

  10. Liesel Orend says:

    Had never heard of ATN….have been coordinating care on my own that I wouldn’t know any other way, at this point, but care that was covered by insurance would certainly be helpful!

  11. Joanna McGowan says:

    I have never heard of ATN, but just looked it up. The one in my area is affiliated with CHOP. I’m sure if I saw that in the past I would have discounted it immediately.

  12. Melissa says:

    Never heard of ATN.

  13. Jamie says:

    AS was never any help to us, so I really had no idea what an ATN was. I looked it up and wasn’t surprised to see Vanderbilt listed as an ATN. It’s where all the traditional pediatricians within 3 states send their patients with developmental issues they don’t understand. I cringe when a mom tells me she’s taking her child to Vanderbilt for an evaluation. Their arrogant practitioners actually make every effort to destroy all hope of improvement or healing and will not support biomedical interventions. I have often wondered why they want moms to leave in tears. Such a sad place – i’m so glad we have real help and real hope thru TACA and ARI !!

  14. Michelle Morales says:

    I had never even heard of the ATNs before until you brought it up to us. I hold a PHD in google research and have gone through lengths to research information about resources to help my son with autism. We’ve been to numerous conferences, community support meetings, educational speeches, and ATNs have never been brought up.

  15. Vanessa Surprise says:

    I am in San Diego county my son is almost 8 and was diagnosed at age 2 we have never heard of ATC before. We have been using a couple of different MAPS doctors to treat his medical issues since diagnosis and we found out about the maps doctors from TACA.

  16. Shannon Primer says:

    My child was diagnosied 9 years ago and I have never heard of Autism Treatment Network (ATN). I am well connected in the autism community of SoCal and find this shocking that no one I know has ever even talk about Autism Treatment Network (ATN) .

    As always Lisa thanks for representing our family and being our fearless leader!!!!

  17. recoveringgrace20 says:

    I have never heard of ATN’s.

  18. Silvia Martinez says:

    thanks Lisa for the posting. I as well with two kiddos on the spectrum have never heard of ATN’s either.

  19. Rosemary Williams says:

    I have never heard ANT’s.

  20. Brandi Picardal says:

    Hi Lisa,
    Thank you for doing the blog on the Autism Speaks Conference.
    I was particularly interested in the paragraph about ATN’s.
    I recently heard at a seminar that we may one day get one here in Hawaii.
    I am interested to know how effective they are? Is it worth our time to push for Hawaii to get one?
    Sincerely,
    Brandi Picardal

  21. Kristine says:

    I have heard of ATN but had no idea where they were, turns out one is about an hour away from me. We take our son over 2000 miles to his MAPS dr. If these ATN centers were effective, I surely would have heard of them and I would have taken my son to one.

    1. Kristine says:

      Actually I thought the ATN was still in formation/idea phase. So are these totally rolled out and up and operating?

  22. I have been a therapist 22 years and have never heard of ATN

  23. Erin Sullivan says:

    No, I had never heard of the treatment network or understood its function. I kind like to think i am on top of things and asked another parent after i saw your post 2 weeks ago and she termed her experiences bogus and a waste of time. We live just north of NYC and do have access to quite a lot of services. She said “they had nothing new” among other derisives I’d rather not repeat.

  24. angie says:

    Never heard of ATN….I have two boys on the spectrum. I found TACA and never looked back. I , too , am closest to CHOP and would never even think of doing anything associated with them in any way. If they are the primary feeding source for this local ATN, it is possible they are missing out on referrals because of the extensive waiting list for diagnosis at CHOP?
    Private evaluation or early intervention referrals may be a better way for them to offer real help to those who want it from them. Also just wanted to say thank you Lisa for all you do. My boys are in great shape. Thanks for being a part of it!

    1. Sharon in PA says:

      Last summer, the “wait list” for ATN was only a few weeks. ATN families also appear to get priority for follow up appointments, because everything changed when I reminded the person over the phone that we’re in the ATN. Suddenly I got an appointment in 2 weeks instead of 2 months.

  25. Sharon in PA says:

    I learned of the ATN after participating in a research study at the Center for Autism Research at CHOP. The researchers were great, and referred me to ATN after I questioned the value of continuing on with a developmental pediatrician. I figured I’d give it a try. My son was diagnosed in 2006, so I’ve been at this awhile and wasn’t expecting much. When I began to suspect PANDAS, our NP at ATN got us an appointment with Infectious Disease at CHOP only a couple weeks out, although I ended up cancelling the appointment due to the horror stories I’d heard about how CHOP treats PANDAS/PANS cases. However, I’ve been fairly impressed with the quality and quantity of referrals they are able to give across a variety of areas affecting our kids. For example, I got a list of about 10 practitioners who could perform a through neuropsych exam. The dr we saw at our most recent appointment was extremely respectful of the “alternative” treatments we are pursuing to treat my son’s PANS. She was honest about what she did and didn’t know and told me about some research that CHOP is doing in maternal antibodies when I asked her about congenital lyme and autism. I hope this helps you, Lisa!

  26. Melina Byrne says:

    My son was diagnosed 12 years ago and I have never heard of ATN.

  27. gammicca says:

    I have heard of them because I knew that AS was creating a treatment network that went along with their efforts of passing legislation to move toward ABA as the primary treatment across the country. Additionally I was disappointed to see the focus on CAA being changed within the reauthorization to provide support to these centers without looking at the medical home model of treatment for individuals on the spectrum for overall wellness. I feel that AS’s efforts via ATNs are for a business model, via insured parties, to profit. The majority are offering ABA as their central focus and then building plans of services around that. Therefore they are early intervention centers first. They also are not looking at medical conditions within their plans of services nor addresssing that for individuals who have more challenging behaviors initially that may not be able to attend for ABA. These too are often due to underlying medical conditions.

    My hope is that these centers look to what Dr. Frye is doing as a model and address the medical aspect of ASD within treatment plans. Additionally it is my understanding that very few uninsured children are accessing these services nor are those on Medicaid. So these ATNs are benefitting those that the autism legislation benefitted, not those self-insured, uninsured, nor getting services via Medicaid. It’s logistically creating a have and have not scenario for families that is not what should be transpiring.

    I would urge parents to become involved in this. Know what is transpiring in your states within equal access to medical care that is choice driven while also realizing that we in states without ATNs aren’t being appropriately supported via CAA funds due to the way the Act was reauthorized. These ATNs, if accepting federal funds, should in my view have choice and MAPS trained doctors available to families.

    1. Great points Carolyn. I hope the team at Autism Speaks reads these comments and reaches out to address the marketing of ATN’s to families living with autism. In addition the goal needs to be addressing the medical needs of each individual using standards of care covered by all insurance plans. The process is not working for many families and that needs to change.
      It is a big wish. It is much needed. I will help drive this process forward to help more families.

      1. gammicca says:

        Thank you Lisa. We’ve seen some terrible things happening to families across the country that are being left out of services or being provided a much lessor standard of care. MI autism insurance legislation was passed to create a business entity for early intervention and ABA. Mind you I’m not against ABA, however each individuals should have their needs met and starting there is always not the answer. Our state too has 75% of families that are self-insured and a pot of money for those self-insured, tax payer money, that was set aside for use and is not being used. 15 million dollars set aside while other programs were cut like respite. Last I checked only about $14,000. of that money was used.

        Additionally now we have a bottleneck of those seeking services, many not knowing they had self-insured policies, and only a handful of approved centers. Also via Medicaid a waiver was set up for ages 0-6 to allow for ABA, but only up to 16 hours a week. We all know that is not what was provided as an evidence based best practice model. This intervention will also not be provided by well trained staff but individuals that have very little training or experience. It’s appalling to see this and I don’t think that AS at this point realizes what has been caused by their legislative efforts. This however will all possibly be moot with legislation reform in 2014. However the “business of autism” is what the ATN model basically is and will leave many without services.

        Also those seeking medical assistance are now being directed toward evaluations for behavioral assistance and there are up to a year waiting list in some cases. What also is happening is a block on factual information reaching families by the providers and those hired to keep everyone at arms length until the ABA provider networks are created. No where within all of this is the medical home model of overall care being mentioned and many children who are medically ill are not being treated. One aspect of this we’ve seen is emergency room visits for behavioral challenges. Many times those behaviors are communicating pain that is not being addressed medically and many children are being misdiagnosed or not properly treated. I won’t even begin to address the adult needs because ATNs don’t seem to have those on their agendas.

        I’d urge parents and self-advocates to get involved in this. Medical choices are important as are involvement within the decision making process on national policy. We need to have a voice in these discussions and individuals like Lisa being representative of members sitting at that table. This is not all about what AS wants, it’s about what our community needs.

      2. Thanks Carolyn. I appreciate the words.

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