Home > Science > A Toy Story: Toddler Treatment Network finds an effective treatment strategy for some young children with ASD

A Toy Story: Toddler Treatment Network finds an effective treatment strategy for some young children with ASD

It is now possible to screen for autism spectrum disorder in toddlers as young as 18 months of age and ways of screening even earlier are being tested.  When a parent learns that their young son or daughter is showing symptoms of autism,  it is important that they be offered intervention strategies that can help their toddler at risk for ASD have the most positive outcome.  To address this need, in the summer of 2006, Autism Speaks began an initiative to support research on early intervention targeting toddlers with autism spectrum disorder (ASD) from 18-24 months of age.  There are many questions that need to be addressed:  Who should deliver the intervention?  How many hours are required? What strategies should be used?  Are these strategies effective?  Research funded by  Autism Speaks is addressing these questions.

At the time the initiative was started, many clinicians were already referring children to birth to three  services in their communities and developing their own programs using techniques that could improve communication, social behavior, and language in toddlers. However, very few randomized clinical trials – the gold standard for determining whether a treatment is really effective – had been performed in toddlers with ASD. Of the randomized clinical trials that did exist for this young age, the number of children participating was low, so it was not clear how well the results would generalize to other children.

To solve this problem, Autism Speaks  provided resources to clinicians and researchers who were working with children with ASD as young as 18 months of age to determine what types of interventions were effective, what made them beneficial, and how symptoms improved over time. As a result, 7 projects involving multiple sites around the US and Canada began in 2007 and the Toddler Treatment Network was born.

Each project is unique in the type and style of the intervention, but all the projects shared a common link: they all included parent training for delivery of interventions at home. This model is attractive because parents or other caregivers are able to deliver the intervention through the day in familiar settings. This model offered more time in intervention and wascost-effective.  Members of the Toddler Treatment Network came together to share ideas, best practices, and a plan to combine their data at the end of their studies.  As a result, over 250 toddlers have been recruited to participate in these studies, and a meta-analysis combining data from all studies will be completed in 2012.  Full descriptions of the projects can be found here:  http://www.autismspeaks.org/science/research/initiatives/toddler_treatment_network.php

Recently, one of these research groups published their first set of findings in the Journal of Child Psychology and Psychiatry.  At study sites in Miami, Boston and Tennessee,  children with ASD were enrolled in the Hanen More than Words program, which is focused on developing language and communication skills in toddlers.  The comparison group of children with ASD were enrolled in local early intervention programs, support groups, and other behavioral interventions.  Children and parents were assessed at the beginning of the study, during the study, and 4 months after the intervention ended.

At the beginning of the study, a number of behaviors were examined, including the number of toys or objects a child played with. While the Hanen intervention was not effective for all children, it was particularly effective for children who did not play with many toys before the program started.

Why?  The researchers speculate that during the intervention the toddlers who were less object- focused may have been more easily engaged with their parents during the intervention and thus spent more time learning appropriate responses.  These results suggest that as toddler interventions are developed it will be important to understand which kids are most likely to benefit from each type of intervention.

This study adds to the body of evidence showing that early intervention in autism can lead to meaningful improvements in social, behavioral, and communication outcomes.  However, one type of intervention strategy is not going to work for all children affected with ASD.

With this in mind, studies that are part of the Toddler Treatment Network focus on different programs and different methods for promoting development.  A higher-intensity program may be needed in some children.   For other children, however, the Hanen style of intervention strategy, which allowed parents to deliver the intervention in different settings, resulted in significant improvement in outcome compared to traditional methods.

Wendy Stone, Ph.D., study co-author and director of the University of Washington Autism Center described what she saw as a successful result of early intervention for autism:  “Our ultimate goal is to catch the symptoms early and find effective preventive interventions so that these children can attain their full potential.”  Autism Speaks is looking forward to the findings from all these studies, and will keep you updated when they are published.

  1. Tina
    March 25, 2011 at 4:43 pm

    While wonderful that new therapies are being discovered, and early detection is possible, therapies are still not readily available to the average family. Everyone touts “early intervention”, however the cost of services are so beyond the reach of most. We knew at about 18 months, however still do not have services at age 5 – due to costs we simply can not afford. We have excellent insurance, however they do not cover neurological therapies, and do not recognize autism – and have a no-appeals policy. With the wait-list for services being *years* long, we were told simply to not even bother to sign up.

    So while new therapies and early detection are fantastic news, it really is only worthwhile to the wealthy. The rest of us still can not access services that already exist.

    Instead of researching new therapies, how about making therapies affordable.

    • Carmela
      March 25, 2011 at 5:37 pm

      That is unreal. What about early Intervention??? My son is 2 1/2 and receives early intervention. It costs nothing.

    • March 25, 2011 at 8:55 pm

      HI I am sorry that you have struggled to obtain services for your child. I have to ask what part of the country you are in. I live in mass and have had two children go thru early intervention at no cost. The first child had a speech delay and the second an autism Dx.My child with autism is now age 13 and insurance does pay for some services. I also work for an intensive early intervention program servicing children on the autism spectrum age 0-3. T. Also here is NO cost to any family who receives services.

    • March 26, 2011 at 8:52 pm

      Tina,

      I, too, am sorry to hear about your difficulties. My son is challenged with Autism and at the early age of 16 months he was enrolled in an early intervention program that Easter Seals offered (free of charge). Colt is now 9 years old and every step of the way, we have been blessed with a program or insurance that covered everything.
      You might want to look into Medicaid TEFRA (a fabulous health insurance that covers all of Colt’s treatments) and it does not matter what the family income is.
      God Bless.

    • Sarah
      March 27, 2011 at 11:55 am

      Tina – While everything you say is true (depending on where you live/some states are better than others/your insurance/whatever).

      Hanen’s “More than Words” has been in publication since 1999 – and it is invaluable. I don’t know how much it cost us way back when (though not 1999), it is currently going for $70.00 on Amazon and $54.00 directly from Hanen. Granted, $54 is an expensive book. The combo pack is $89 (with CD). We never had a CD :). But, for us this book was invaluable and a great deal of our early interventions were from this book. I am very, very thankful that this is one of the first books I ever read on our journey. So, for under $100 – parents could have an invaluable tool at their fingertips.

      http://www.hanen.org/Hanen-Resources/Resources-For-Parents.aspx

      http://www.hanen.org/Online-Store/Products/More-Than-Words-Guidebook.aspx

  2. March 25, 2011 at 5:27 pm

    The earlier the intervention the better. In my recent study of now more than 850 individuals with autism, I have identified several bio-markers that I am using to predict prior to any diagnosis. I believe this approach will allow the parents who debate having a child the opportunity to have some peace of mind regarding their expected child. I would expect this approach to allow sufficient time for intervention that would actually prevent autism from developing in those predicted to have it. This research is ongoing.

  3. Jen
    March 25, 2011 at 5:32 pm

    I agree with Tina. Therapies for kids on the autism spectrum are very pricey, especially for the hit and miss success rate. Our insurance does not cover any of the therapies, either.

    We gradually found out our first son was on the spectrum when he was in daycare, and they noticed the lack of social skills, so between our family, the daycare and brief meetings with the Area Education Association, we found ways to help our son in his normal daily situations. In that time, I did a lot of research (and I stress *a lot*), and after that we did get a diagnosis before he began school. However, I could not afford any of the therapies recommended. So, I had to learn to cope with it on my own. For the first three years of school, we had great support from school on getting services to help him. Now that school budgets are in crisis, special services have dropped to almost nothing for my son and we’ve had a difficult time getting the autism team to observe and give recommendations for his education. Our son has progressed so well in school and even at home, yet with these new shortcomings in his needs at school, I see the negative effects beginning.

    Yes, I think that the best intervention for “high functioning” kids on the autism spectrum is to train parents. I know in my experience that doing “interventions” in a familiar setting with people that the child already knows and trusts is the best way to help them. Yet, to get the proper training for parents would likely be too costly and time-consuming for those who have full-time jobs just to try to make ends meet every month. It always seems that our social, cultural and economic predicaments faced by parents of autistic kids create more challenges on top of the autism challenges they must handle on a daily basis. It is a horrible Catch-22.

    Yet, I am grateful for the steady progress I’ve seen in my son, and I have hope for a bright future for him, even if it means that I must train myself further to help him more effectively, as getting “professional training” would mean that we could not afford to live.

  4. Marion Bell
    March 25, 2011 at 11:16 pm

    There are Early Childhood Intervention programs funded with state and Gov. funds. Also the school districts can give you alot of info. Ask for the Diagnostition. All of these programs are at no cost, also these programs have a wide variety of services they offer for family support.

  5. Katie Wright
    March 28, 2011 at 2:14 pm

    I did a Hanen program with my son. It is a great resource for moderately to HF healthy toddlers. I especially liked how parent friendly the text was and the exercises totally adapted to typical home activities. Hanen also does a very nice job of providing opportunities for sibling interaction via games and learning disguised as fun.

    Training parents w/ these programs is extremely cost effective.

    However, it is also so disappointing when I read about early intervention as if it is all behavioral.
    As much as I liked Hanen it had no impact on my son because he was in the midst of a severe regression. The psychologist running the program was totally unfamiliar w/ kids like mine. Psychologists need to work more closely w/ ASD pediatric specialists and learn about why some children may NOT be progressing in early intervention. It is not a matter of pivotal response vs. ABA vs. DIR – it is often biological.

    • Sarah
      April 1, 2011 at 9:05 am

      Katie – Well said (as always). :)

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