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 (www.autismvotes.org ) 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.
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 firstname.lastname@example.org. 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.
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!
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 http://www.autismspeaks.org/science/science_news/imfar_2010.php
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
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.
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 fifth item is Diagnosis at 14 Months.
In a study in the Archives of General Psychiatry, researchers from the Kennedy Krieger Institute in Baltimore, Maryland found that autism can be diagnosed at close to one year of age, which is the earliest the disorder has ever been diagnosed. The study, which evaluated social and communication development in autism spectrum disorders (ASD) from 14 to 36 months of age, revealed that approximately half of all children with autism can be diagnosed around the first birthday. The remaining half will be diagnosed later, and their development may unfold very differently than children whose ASD is diagnosable around the first birthday. Early diagnosis of the disorder allows for early intervention, which can make a major difference in helping children with autism reach their full potential
Researchers examined social and communication development in infants at high and low risk for ASD starting at 14 months of age and ending at 30 or 36 months. Half of the children with a final diagnosis of ASD made at 30 or 36 months of age had been diagnosed with the disorder at 14 months, and the other half were diagnosed after 14 months. Through repeated observation and the use of standardized tests of development, researchers identified, for the first time, disruptions in social, communication and play development that were indicative of ASD in 14-month olds. Multiple signs indicating these developmental disruptions appear simultaneously in children with the disorder.
The current study reveals that autism often involves a progression, with the disorder claiming or presenting itself between 14 and 24 months of age. Some children with only mild delays at 14 months of age could go on to be diagnosed with ASD. The researchers observed distinct differences in the developmental paths, or trajectories, of children with early versus later diagnosis of ASD. While some children developed very slowly and displayed social and communication abnormalities associated with ASD at 14 months of age, others showed only mild delays with a gradual onset of autism symptoms, culminating in the diagnosis of ASD by 36 months.
If parents suspect something is wrong with their child’s development, or that their child is losing skills during their first few years of life, they should talk to their pediatrician or another developmental expert. This and other autism studies suggest that the “wait and see” method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention during this time period.
To read the complete story, including the signs of developmental disruptions for which parents and pediatricians should be watching, please click here http://www.autismspeaks.org/inthenews/landa_study.php.
Update since this story was run: Members of the Baby Siblings Research Consortium, a collaboration between Autism Speaks and the National Institute of Child Health and Human Development, have now published multiple scientific studies demonstrating that early signs of autism can reliably be seen as early as 12-14 months of age. This improved understanding of the early signs and symptoms of autism has permitted development of new measurement tools to both quantify and diagnose autism symptoms earlier than ever before. For example, the Autism Observational Scale for Infants or AOSI was published by Autism Speaks’ grantees in 2008 and is currently a part of many protocols involving early autism diagnosis and intervention. It has been shown to accurately detect autism as early as 12 months of age. In addition, a modification of the ADOS, called the ADOS-t, was released in 2008 to enhance the clinical diagnosis of autism, indicating a range of concern for children as young as 12 months of age. Both tools are huge advances in the field of diagnosis, allowing for reliable early detection and placement in appropriate intervention services.