Posts Tagged ‘early intervention’

Is early intervention for ASD actually prevention?

May 15, 2011 12 comments

By: Alycia Halladay, Ph.D., Director of Research, Environmental Health Sciences

As the average age at which early signs and symptoms of autism and diagnosis moves becomes younger and younger, methods for intervening at autism at the earliest possible ages are becoming more widely used. At this year’s IMFAR meeting, several clinicians and researchers addressed differences in design, methods, and identified challenges and potential solutions for delivering intervention from individuals with ASD as young at 10 months of age. Since this is when very early symptoms of ASD can be detected, but not yet diagnosed, many are considering this as a method of prevention rather than intervention. A feasible and cost-efficient way to provide interventions to infants and toddlers is to engage parents and train them to use behavioral techniques to improve development. What works for adolescents and adults does not apply to infants and toddlers. Instead of spending time working on specific tasks and skillsets, clinicians work with parents and provide ongoing support to engage children in social, communication and motor skills during playtime activities. But does this prevent ASD?

The simple answer is that it is very complicated. As reported in an earlier report, one size does not fit all. There may be a number of variables that affect outcome. In addition, last year, a report out of the UK last year reported that parent-mediated interventions did not result in a change in diagnostic status in young children. This same group showed new data at IMFAR this year showing that the intervention was effective in some ways – infants showed increased attention and gestures as well as improved shared interest. These early improvements are thought to lead to a higher level of functioning later on.

Children with ASD suffer from impoverished social interaction, and parents can be instrumental in providing stimuli to their children to change behavior. Most interventions now focus on encouraging parents to actively engage the child using evidence based strategies, in natural environments. Other types of interventions that were used included promoting behaviors and responsiveness in the context of everyday routines.

Given that published research don’t actually prevent ASD, but improve long-term outcomes, is the goal of early interventions to reduce the incidence of ASD? Alice Carter, member of the Autism Speaks Toddler Treatment Network noted that earlier screening and delivery of parent interventions which improve joint attention, and coordinated attention between parent and child – may prevent symptoms down the road, but may not always lead to a change in diagnosis. She stated “working with parents can make a huge difference in many children’s lives.”

Improved outcome measures which are more sensitive to improvements over time on a number of domains need to be developed to better describe these differences. In addition, working with a young child at home is difficult in any situation, and especially for families affected by ASD. Therefore, methods and techniques to maximize the amount of time parents deliver effective interventions are considered a priority. Autism Speaks is proud to sponsor this network in thinking about these important issues.

The Search for Evidence-Based Practices for Individuals with ASD Continues

April 13, 2011 12 comments

This post is by guest blogger, Samuel L. Odom, Ph.D. Dr. Odom is the director of the Frank Porter Graham Child Development Institute and professor in the School of Education at the University of North Carolina. He is the author or co-author of many refereed journal articles and editor or co-editor of seven books on early childhood intervention and developmental disabilities.

Many efforts exist now to locate practices, intervention approaches, and treatments that improve the development, functioning, and well-being of individuals with Autism Spectrum Disorders (ASD) and their families.  Inspired by the model established by the Cochrane Collaboration ( ) in evidence-based medicine, investigators from a variety of organizations (i.e., the National Autism Center, National Professional Development Center on ASD, What Works Clearinghouse) have conducted and are continuing to conduct systematic reviews and evaluations of the research literature to discern approaches with sufficient scientific evidence of efficacy to support their use.  Such reviews have practical importance because they guide practitioners, physicians, and family members in their selection of practices to use with individuals with autism.  They also have social policy implications in that they may guide the selection of services that received funding from social service agencies.

A research group at the Vanderbilt Evidence Based Practice Center has just published three such reviews in Pediatrics that contribute substantially to the growing literature on evidence-based practice.  Following a standard and rigorous evaluation process, this research group reviewed the literature from 2000 to 2010 and reported their findings for Early Intensive Intervention (Warren et al., 2011), Medical Treatments for challenging and repetitive behavior (McPeeters et al., 2011), and one additional specific medical treatment, Secretin, thought to have generalized effects (Krishnaswami, McPheeters, &Veenstra-VanderWeele, 2011)

Early intensive interventions for children with ASD are behavioral or developmental in nature.  Such interventions focus on improving the intellectual, communication, social, and adaptive functioning of young children with autism.  In their review, Warren et al. (2011) examined the evidence for three comprehensive treatment approaches as well as a set of other approaches for which less research had been reported.  The Lovaas/UCLA model has the largest set of research literature, with one study being judged of good quality, and a set of other studies being of lesser quality but documenting strong effects for the model.  The Lovaas/UCLA approach is an intensive, individualized behavior therapy model that emphasizes application of applied behavior analysis principles and discrete trial training.  The Early Start/Denver model also had one randomized study and a second supportive study documenting efficacy.  The Early Start/Denver Model also employs applied behavior analysis principles within a functional developmental conceptual framework.  The third set of intervention practices focused on training parents to deliver primarily applied behavior analysis interventions in the home and community to promote communication skills, IQ, and adaptive behavior.  Three studies of fair quality substantiated this intervention approach.  Warren and colleagues concluded that the  early intensive interventions, as a group, have promising outcomes but the evidence of efficacy is at this point modest.  They noted that such interventions have “significant potential” but require further research to establish efficacy more strongly.  To quote the authors of the review, “At present, a paucity of research leaves us with individual studies that suggest promising outcomes but a critical need for replication, extension, and controlled studies of the factors that moderate treatment outcome. Thus, the low and insufficient strength of evidence reported in this review should not be interpreted as evidence that the interventions are not effective but, rather, as encouragement for additional research.”

In their examination of medical treatment, McPheeters et al. (2011) note that prescribing medication for co-morbid symptoms associated with ASD (e.g., challenging behavior, stereotypic behavior) is a common practice but reviews of evidence for outcomes have been limited.  They examined the literatures for antipsychotic, Selective Serotonin Re-Uptake Inhibitors (SSRIs), and stimulant medications.

Two antipsychotic medications studied most often, risperidone and aripiprazole, targeted challenging behaviors and repetitive behaviors.  Randomized studies of sufficient but varying quality documented the positive effect of both medications on ratings of targeted behavioral outcomes for children with ASD, but these studies also consistently documented adverse side effects such as weight gain.  McPheeters et al. proposed that the reports of such consistent side effects might limit the use of such medications for all but those “individuals with significant impairments or risk of injury.”

Less or weaker evidence were found for the latter two forms of medication.  One acceptable randomized study did document the effects of the SSRI Fluoxetine on repetitive behavior and a second randomized study of fair quality documented the effect of SSRI citalopram on challenging behavior.  McPheeters et al. concluded, however, that the overall evidence for the use of SSRIs was insufficient.  Similarly, although the RUPP Autism Network study of the effects of methylphenidate (a stimulant) on challenging behavior did reveal some positive effects, albeit with side effects, McPheeters et al concluded that the evidence for stimulants was insufficient.  As a general conclusion, the authors proposed that literature addressing the use of medications for children with ASD lacks sufficient quality, studies has often been funded by pharmaceutical companies (without independent replication), and medications have not been compared with, or assessed in combination with, behavioral interventions that have the same targeted outcomes.

In a third review, Krishnaswami et al., (2010) examined the research on the use of Secretin for the treatment of communication impairments, symptom severity, and social deficits for children with ASD.  Secretin, a medication used to treat gastrointestinal disorders and pancreatic functions, is also theorized to affect the central nervous system and act as a neurotransmitter.  Its proposed use for treatment of ASD was based on an uncontrolled case series of three children.  The Krishnaswami et al. literature review identified eight studies meeting their inclusion criteria, with quality of the studies ranging from good to fair.  Across studies, no positive effects for use of Secretin were found.  This was the most unambiguous finding of the three reviews by this group.

The three reviews conducted and reported by the Vanderbilt Evidence-Based Practice Center contribute to the ongoing knowledge about the “state of the art” in interventions and treatment for children with ASD. Their rigorous and conservative evaluations highlight the practices that are beginning to come forward as efficacious for individuals with ASD (e.g., some early intervention models, antipsychotic medications), the implications of employing some efficacious treatments (e.g., severe side effects), and treatments applied in the past that now have strong evidence of non-effects (i.e., Secretin).  Importantly, these reviews speak strongly to the importance of future, high quality research in both the behavioral and medical treatment areas.

Read the press release from the Agency for Healthcare Research and Quality.


Zachary Warren, Melissa L. McPheeters, Nila Sathe, Jennifer H. Foss-Feig, Allison Glasser, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0426).

Melissa L. McPheeters, Zachary Warren, Nila Sathe, Jennifer L. Bruzek, Shanthi Krishnaswami, Rebecca N. Jerome, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0427).

Shanthi Krishnaswami, Melissa L. McPheeters, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0428)

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

March 25, 2011 10 comments

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:

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.

The Ten “C”s for Enhancing Early Intervention for Autism

March 8, 2011 3 comments

On Saturday, March 5th, over 100 researchers, scientists, NY state advocates, professionals, service providers and parents gathered in NYC for a public policy roundtable on the challenges of enhancing early intervention services for toddlers with ASD.  It is estimated that over 1300 children between 18 and 30 months living in NYC will be diagnosed with ASD, however, it’s likely that not all of them are receiving the services they need.  When it is delivered, early intervention can lead to improvements in outcome (

What then, are the barriers?  In some cases, pediatricians may not be implementing screening tools to find toddlers with ASD.  Also, parents don’t know what to do even if they are told that their child has screened positive.  Interventions themselves may be inaccessible or nonexistent.  How then can scientists who are developing and  determining effectiveness of interventions work with pediatricians and service providers in their communities?  How can state agencies and advocacy organizations help their efforts?  What needs to be done to build upon or improve existing systems?

First, CAPACITY should be built to train specialists working with the children in both medical and non-medical settings to identify those with ASD early on.  This includes working with nurses, day care and child care providers, and family members to learn to identify early signs of ASD.  Its important when identifying and referring individuals with ASD to early intervention is to be mindful of CULTURE.  In the ethnically diverse New York City, there are neighborhoods that speak dozens of languages.  Instead of screening tools used in doctors offices, there is a need for alternative, observational tools that can be used in a variety of settings. Screening should be implemented in a family friendly way, and speakers and participants provided examples of ways they have been working with pediatricians and other professionals to make the most of a very short 18 month well child visit.

Once children are identified, service providers unanimously agreed that there should be CONSISTENCY and COORDINATION across teams of service providers, parents, and clinicians.  At the core, better COMMUNICATION is needed.  Communication always sounds like a good solution, but more specifically, communication with the parent in helping families find the help they need was highlighted as a need.  Also, those who are working with the child on an intervention should have the opportunity to communicate with each other to develop the most effective and feasible treatment plan.

Parents with children with ASD also need COACHING to use time at home to deliver interventions.  The internet is a valuable tool for helping parents promote the same skills that clinicians are using, and can do so in a variety of settings.  This improves behavior in different CONTEXTS.  Gary Mesibov, from UNC stated  “rather than simply looking at efficacy, which is the scientific evaluation of whether a treatment works, psychologists should be examining the generality of effects across patients, therapists, culture, settings and especially the feasibility of delivering the treatments in real world settings”. Of importance, early intervention services should be CUSTOMIZED. The challenge is finding the right service or intervention for the right family at the right time in the right setting.  Different children will respond to different therapies.  What are the right ingredients to an effective intervention?

What does this all come down to?  COST. Health economist Michael Ganz presented some theoretical models which showed that while initial cost of early intervention service would be high, the long term savings in cost of therapy over a lifetime, decrease in special education services and increase in lifetime earnings would make this initial investment worthwhile from a financial perspective as well.   Currently, service eligibility and reimbursement is based on a diagnosis.  If they were based on a risk of diagnosis from very early markers, the outcomes of children at risk for a number of disorders could be very different.

Those were the challenges.  How about the solutions?  Autism Speaks is CONTRIBUTING on a number of levels:

  • Advocacy for insurance coverage of screening, diagnosis, treatments as well as support for future federal and state funding (
  • Fostering training in different communities, including low-resource countries, to improve the availability of services both within and outside the United States (
  • Resources and tools such as the Autism Video Glossary that help parents and professionals learn more about autism’s early signs and diagnostic features and the 100 Day Kit that assist families in getting the critical information they need in the first 100 days after a child’s is diagnosed with autism.

What else is needed?  Let us know what you think – while we may not be able to answer every comment we do read them and appreciate your thoughts.  More information on the roundtable can be found here:


Time to Intervene?

November 3, 2010 4 comments

A New York Times’ article on autism highlighted the challenges of obtaining an early diagnosis and treatment for parents who are facing a second child who is at risk for ASD.  The story follows a family who has a diagnosed 5 year old son and a 7 month old baby boy who is showing signs of departing from a normal developmental trajectory, especially his interactions with other people.

The story is an excellent portrayal of the challenges and successes of a family living with autism and features two scientists engaged in the Autism Speaks’ High Risk Baby Siblings Research Consortium, Sally Rogers, Ph.D. and Sally Ozonoff, Ph.D.  The ability to distinguish autism from variations in development that lead to an otherwise normal outcome is limited at the early ages, but research is finding new ways to identify the earliest signs of autism risk.  Since the best bet for a good outcome is early, intensive behavioral intervention, identifying these early signs are extremely valuable.

The story highlights the Early Start Denver Model, an intervention approach developed by Rogers and Geraldine Dawson, Autism Speaks’ Chief Science Officer.  This intervention method, which was evaluated in a controlled trial, can be used with children at risk for ASD as young as 12 months of age.

While early intervention methods for toddlers with ASD are becoming increasingly available, there are still many families that have difficulty accessing early intervention services.  Autism Speaks is working to disseminate research that has been established as best practices while simultaneously pressing for more research in needed areas.  Our partnership with the Early Autism Risk Longitudinal Investigation (EARLI) has helped to broaden the participation and scope of this important study of early risk factors.  In terms of intervention, Autism Speaks’ support of the Toddler Treatment Network is focused on both the dissemination and further research needs in young children identified with autism.  At the same time, our continued advocacy for ending insurance discrimination for behavioral health services for children with autism ( ) is essential to our goal of providing every child with autism the services they need and deserve.

By strategically investing our scientific resources in areas of need and advocating for families, Autism Speaks seeks to improve the outcomes for those struggling with ASD today and to lessen the struggles for those who will be diagnosed tomorrow.

In Their Own Words – The Rescue of My Son

July 5, 2010 36 comments

This “In Their Own Words” essay was written by Evelyn Halka, who has a son with autism.

Jacob was born into our family four and a half years ago. He was a beautiful baby, big blue eyes, beautiful face, sweet little fingers and toes. Jake was also an easy baby to nurse who responded well by gaining weight on schedule. He was easy to amuse, he loved his musical toys, he loved the TV, he loved to watch the fan, and he loved the baby swing. We proudly marked the calendar with all of his development and accomplishments. We felt Jake was right on track; he rolled over, sat up, crawled, stood, walked right on schedule. He babbled, waved, and clapped and would say mama and dada.

Slowly like a season, things began to change. There are so many common explanations. Boys develop slower than girls, he had his big sister talking for him, and sometimes it takes longer for the second child. I was not worried at first, not until other skills started to slip away. I hadn’t seen him wave bye-bye as much, the clapping? Where had that gone? It was sneaky, it wasn’t a date you could put your finger on, but the sounds slowly started disappearing until there was nothing left. He was focused on objects; he played for hours with colorful toys in particular. Jake really was becoming less and less interested in us. I felt like I just became a way for Jake to get what he wanted. He would pull on me and my husband and bring us to the area of what he wanted. He started to have trouble sleeping; he would wake up crying often throughout the night and then be up at 3 or 4 a.m. for the day. Jake would no longer tolerate being restrained in any way, no high chair, no stroller, and no shopping carts. Jake started to do unsafe things, jumping off of anything he could, climbing and jumping. If he became upset he would bang his head against the highchair. He started to be very selective about what he would eat eliminating almost everything until we were down to about four foods. We would call him and he would not look at us. We could not get him dressed, bathed or teeth brushed without a fight, he could not be directed into any activity. The sounds were gone, the sleeping was gone, the waving, the clapping, pretty much all of the things that Jake was, were disappearing. Finally, Jake was gone too.

I called early intervention at the advice of my sister. After meeting with early intervention, an evaluation determined that Jake was delayed in all areas, and was a candidate to be evaluated by the Autism CATCH team in Chester County, Penn. Jacob was eligible for early intervention and received special instruction, occupational therapy, and speech in our home until he reached age three. He was evaluated by the CATCH Team and was diagnosed with autism spectrum disorder. It was recommended and approved that he attend the TOT preschool class provided by the ARC of Chester County.

Slowly the special instruction we received began to change my family’s life. My everyday battles were meet head-on with interest, respect, empathy and experience. My husband and I were willing participants in my son’s therapy and our son’s teacher truly become our teacher, and we learned to get to Jake with her help. A strong focus on picture exchange communication lead the lessons and slowly with helpful modification made by our instructor, Jacob began to communicate his wants to us. Slowly his frustrations began to become less. Through pictures, sequences and stories my son began to participate in his life, he finally found the words he needed. At this time we also began to receive wraparound services, and behavioral support in our home. The combination of the therapies began to fall into place. This was the beginning of his breakthrough.

Jake’s participation in the TOT program was a pivotal turning point in his story. Once Jake began the TOT program he was again becoming the son I once knew. He received OT, speech and special instruction in concentrated, individualized form in this classroom six hours per week. He absolutely blossomed and rose to the challenges he had in his life with this help. The program attacked problems and everyday battles, leaving us with the sense that we could lead a fulfilling life with my child and sanity intact. Going out into the community in various ways gave Jake so many skills. He is able to be examined by a doctor, a dentist, get a haircut, play at a playground, eat at a restaurant, shop in a store, and go to the library! I would never have imagined that we would ever enjoy any of these activities with our son. I feel like we were blessed to have Jacob in this program, and that he would not be where he is today without it. Jacob’s progress is remarkable, and been achieved because of this amazing program and the staff that provides it. I can not stress enough how instrumental it has been in my sons recovery.

Jacob is now four and a half and speaks in complete sentences. He attends a developmentally delayed class room and is doing very well. He will brush his teeth and sit at the table and even clean up his plate and his toys. Jacob sleeps through the night and now calls me “mommy,” my husband “daddy,” and his sister and dog by name. He is a pleasure to be around and I am grateful for all the amazing people who have blessed our lives and helped us along the way to get where we are.

Every child who is slipping away unto himself should have the chance that Jacob had; I hope that these services can be maintained and expanded to meet the demands of this epidemic. I am forever grateful for the RESCUE of my son, Jacob William Halka.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Autism Remission?

June 28, 2010 23 comments

This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism. Orfa’s writing can be read in English and in Spanish on her blogs.

I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?

Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.

So, if this analogy is right, does that make Frankie an autism survivor?

Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.

Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?

I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?

So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

When it Comes to Intervention for Autism, is Earlier Better?

May 22, 2010 2 comments

Guest Staff Blogger: Alycia Halladay, Ph.D.

 This was one of the major questions addressed at the International Meeting for Autism Research Meeting this week. Researchers from around the world – the U.S., UK and Canada, presented their research on the effects of early intense behavioral interventions to treat, and sometimes prevent, symptoms of autism spectrum disorders. Both parent training and clinic-based models were assessed. In many cases, a mix of both was used. While one study found that parent training alone was not effective in improving the symptoms of autism, a group in Canada found that parental training in applied behavioral analysis in children as young as 19 months, together with participation in the intervention process allowed parents to feel more empowered, independent, and reduced stress levels. Another randomized clinical trial in children screened and enrolled as young as 12 months showed that targeting social communication skills increased communication at follow up and decreased hypresponsiveness to sensory stimuli, possibly reducing symptoms of anxiety in children at risk for autism.   

 Early Behavioral Intervention may not only lead to improvements in functioning (as many as 50 percent of those enrolled in one study went on to a more mainstreamed school system) but also produce long lasting improvements. At the Kennedy Krieger Institute, using a 10 hour/week, 6 month classroom based curricula focusing on shared affect, shared affect and joint attention compared to an intervention protocol that did not target these behaviors, those in the treatment group showed improvements on more aspects of functioning, and these improvements lasted 2-6 years after starting in the study. An additional study at the University of Washington reported follow up data from the Early Start Denver Model, which is a comprehensive protocol targeting cognition, motor, language and social domains. Looking at what may have affected improved outcome using this model, researchers found that while individuals with less severe autism were more responsive to intervention, both those with mild and severe autism, and those who had high and low IQ at the start of the study all showed some response to treatment. What was exciting about the Early Start Denver Model was a presentation by a researcher at the University of California Davis who is adapting the training and implementation of the protocol using a web-based application, providing live 2-way interaction to families that lived miles, or thousands of miles away from a treatment facility. This affords more flexibility and accessibility to families on waitlists for early intervention treatments.

 So is earlier better? The scientific consensus is yes, but what does “early” mean, and in what settings? The research is promising and encouraging, but more needs to be done, not only in identifying candidates for early intervention of autism, but in delivering evidence-based interventions that will be beneficial for the entire family.

 The conference continues through Saturday. To read complete coverage from IMFAR, please visit

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My Five-Year-Old Child Does Not Talk … Will He Ever?

This guest post is  by Connie Kasari, Ph.D., a Professor of Education and Psychiatry and the Center for Autism Research at UCLA.

This is the question and the worry for a quarter to about half of all parents of children with autism.  Research studies tell us that children who can talk by the time they turn five years old have better outcomes.  But is this age marker meaningful, and what does it mean exactly?

The extraordinary success of early intervention programs has been shrinking the numbers of children who remain nonverbal.  Still many children develop slowly, becoming late speakers if at all.   What do we know that helps these children?

Late speaking children were the subject of a recent review paper, which was selected as one of Autism Speaks’ Top 10 Scientific Achievements in 2009 (Pickett, Pullara, O’Grady & Gordon, 2009).  The authors found 64 studies involving 167 children who learned to speak after age five.  Several important observations were noted.  First, the authors found that while most children who learned to speak were between five and seven years some children learned to speak for the first time at age 13 years!  The majority of children learned single words, but some were able to speak in sentences.  Finally, the numbers they report are probably an underestimate of actual cases since researchers often exclude children who are nonverbal, or under-report late speaking children.  Therefore, it may be harder to learn to speak after age five, but it is clearly not impossible.

What types of interventions are helping children to speak? Several approaches look promising.  Both behavioral interventions and ones using augmentative and alternative communication devices (AAC) seem to work.  AAC approaches (examples include PECS, sign language and speech generating devices) do not seem to inhibit the development of spoken language (Schlosser & Wendt, 2008); however, for many children the use of AAC allows them to become communicators without reliance on spoken language.  Thus, AAC interventions need to be adopted more often and studied.

Applied behavior analysis (ABA) is the most common approach to teaching children with autism; however, the results of intensive training have not always improved spoken language.  A promising hybrid behavioral and developmental intervention focuses on ‘joint attention’, nonverbal gestures that develop before children learn to speak with words, and involve the sharing of attention between a person and an object or event.  Preschool aged children who received a joint attention intervention made greater language gains than children receiving traditional applied behavior analysis interventions (Kasari et al, 2008) but it is not clear if similar interventions will work with older children.

At UCLA we are beginning to test out whether a joint attention intervention will be effective for children who are nonverbal and older than five years. The study is an Autism Speaks funded High Risk, High Impact study for Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA).  This multi-site study involves researchers from UCLA, (Connie Kasari) Kennedy Kreiger Institute (Rebecca Landa) and Vanderbilt University (Ann Kaiser).  We are comparing our joint attention intervention with a focus on spoken language (using Enhanced Milieu Training; Kaiser, Hancock & Nietfeld, 2000) to an intervention involving the use of a speech -generating device.  A unique aspect of this study is the use of an alternating treatment design, recognizing that children may need a sequence of treatments for best response, or may respond better with one treatment versus another.  This design is called a SMART design (sequential multiple assignment randomization trial –SMART; Murphy, 2005).  Our goal is to determine the most effective intervention for increasing communication competence of children who are nonverbal, recognizing the variability in characteristics of these children, and the individualized nature of their response to treatment.

So the good news is that language development CAN progress after age five, but stay tuned for more research!

Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Journal of Early Education and Development [Special Issue], 11(4), 423-446.

Kasari, C., Paparella, T, Freeman, S.N., & Jahromi, L (2008).  Language outcome in autism: Randomized comparison of joint attention and play interventions.  Journal of Consulting and Clinical Psychology, 76, 125-137.

Murphy SA. (2005) An Experimental Design for the Development of Adaptive Treatment Strategies. Statistics in Medicine. 24:1455-1481.

Pickett, E., Pullara, O, O’Grady, J., & Gordon, B. (2009).  Speech acquisition in older nonverbal individuals with autism: A review of features, methods and prognosis. Cognitive Behavior Neurology, 22 1-21.

Schlosser, RW, & Wendt O (2008).  Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology • Vol. 17 • 212–230.

5|25: Celebrating Five Years of Autism Science Day 24: Early Intervention for Toddlers with Autism Spectrum Disorders

February 24, 2010 1 comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 24th item, Early Intervention for Toddlers with Autism Spectrum Disorders, is from Autism Speaks’ Top 10 Autism Research Events of 2009. 

Although previous studies have found that early intervention can be helpful for preschool-aged children, interventions for children who are toddlers are just now being tested. As 2009 came to a close, the results were unveiled for the first controlled study of an intensive early intervention appropriate for children with ASD who are less than 2½ years of age. Published in Pediatrics, results of this study showed that a novel early intervention program was effective for improving IQ, language ability, and adaptive behavior in children as young as 18 months.

The intervention, called the Early Start Denver Model, combines applied behavioral analysis (ABA) teaching methods with developmental ‘relationship-based’ approaches, thereby blending the rigor of ABA with play-based routines that focus on building a relationship with the child. Children in the study were separated into two groups, one that received 20 hours a week of the intervention – two two-hour sessions five days a week – from University of Washington specialists. They also received five hours a week of parent-delivered therapy. Children in the second group were referred to community-based programs for therapy. Researchers closely monitored the progress of both groups.

At the beginning of the study there was no difference in functioning between the two groups. At the conclusion of the study, the IQs of the children in the intervention group had improved by an average of close to 18 points, compared to only 7 points in the comparison group. The intervention group also had a nearly 19-point improvement in receptive language (listening and understanding) compared to approximately 10 points in the control group. Whereas only one child in the community-based intervention group had an improved diagnosis, seven of the children in the intervention group had enough improvement in overall skills to warrant a change in diagnosis from autism to the milder condition known as ‘pervasive developmental disorder not otherwise specified.’

While the youngest children in the study were 18 months old, this particular intervention is designed to be appropriate for children with ASD as young as 12 months of age. Given that the American Academy of Pediatrics recommends that all 18- and 24- month-old children be screened for ASD, it is crucial that we are able to offer parents effective therapies for children within this age range. This new study strongly affirms the positive outcomes of early intervention and the need for the earliest possible start.

Did you know?: To encourage research in early intervention, at the end of 2006 Autism Speaks funded a set of multi-site randomized trials to investigate the efficacy of different early intervention techniques in toddlers who show early signs of autism. From this effort a Toddler Treatment Network (TTN) was born to establish the groundwork for collaborative studies that can incorporate different aspects of these various intervention approaches.  The TTN investigators have also been collecting and sharing information on a variety of best practices, including how to build partnerships with local communities. Importantly, all studies are testing interventions that can be implemented outside the clinic, with the aim of decreasing the time between parent’s first concern and initiation of treatment.


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