Summaries of Funded Studies (Early Treatment and Intervention)
In September of this year, Autism Speaks expanded this commitment by inviting applications for funding from researchers studying individuals at risk for developing autism before age 24 months of age.
While evidence thus far has suggested that “earlier is better”, there is little evidence of what therapies and what intervention strategies are the most effective, if at all. The goal of this initiative was to develop the earliest potential diagnosis and to identify evidence-based interventions that can be evaluated in broader-scale clinical trials.
While there is a common thread to evaluating or developing intervention strategies, all projects established a multi-site collaboration combining the expertise of more than one researcher. In addition, each study will allow for an understanding of what are the most important features of an effective intervention, and what are the best practices in developing new intervention procedures.
Autism Speaks received 19 applications and approved funding for seven, totaling $6.1 million committed to these larger-scale early intervention studies. Each study makes a unique contribution to evaluating the efficacy of early intervention strategies as well as developing and evaluating new treatment techniques.
We are proud to support the following projects which will provide clinicians with better evidence-based tools for developing and expanding effective early intervention paradigms.
All grant applications were reviewed and approved by the Autism Speaks Scientific Advisory Board together with a group of panel reviewers. Final recommendations were presented to and approved by the Autism Speaks Board of Directors on Dec. 7, 2006.
Early intervention for children screened positive for autism by the First Year Inventory
The University of North Carolina will use an assessment tool called the “First Year Inventory” to identify infants from a population-based sampling method at 12 months of age who may be later diagnosed with autism.
Following identification, infants will be enrolled in a treatment program called Responsive Teaching (RT).
RT is a fully manualized intervention curriculum that consists of four intervention components:
(1) Pivotal Behavior Intervention Objectives,
(2) Discussion Points;
(3) Responsive Teaching Strategies; and
(4) Family Action Plans.
The manual used by these researchers contains detailed and specific procedures to ensure that the intervention is able to be delivered consistently and in a standardized way; while still taking the individual needs of each child under consideration.
These teaching components are applied to important domains of development for young children.
The Responsive Teaching method of intervention using screening of the population rather than those “at risk” for developing autism has an advantage for participating families because some caregivers may not have concerns about their child prior to joining the study.
The in-home parent-interaction based intervention will be non-threatening and will allow for therapists to meet families where their needs are. Outcome will be measured 6 months following enrollment to determine whether children who enter RT intervention will show stronger developmental outcomes in cognition, language, and adaptive behavior, and less severe autism symptom presentation than those who do not receive RT intervention.
Susan Bryson, Ph.D.
IWK Health Centre/Dalhousie University
Jessica Brian, Ph.D.
University of Toronto
Isabel Smith, Ph.D.
Lonnie Zwaigenbaum, M.D.
University of Alberta
Wendy Roberts, M.D.
Hospital for Sick Children
$638,006 for 3 years
Enhancing inter-subjectivity in Infants at High Risk for Autism
Recently a great deal of progress has been made in identifying the earliest signs of autism and related autistic spectrum disorders (ASD). This has been made possible largely through prospective studies of high risk infants (all with an older sibling with ASD), in which it has been possible to identify infants suspected of having autism by as early as 12-18 months.
This current study will utilize the expertise of a multi-disciplinary team of researchers throughout Canada to evaluate the effectiveness of a newly-developed parent-mediated intervention paradigm. This intervention protocol is implemented in a home setting and incorporates principles of parent responsiveness training and applied behavioral analysis.
The targets of intervention focus on two core domains of development: positive emotion sharing and early social communication. During a period of 6 months, parents will receive intensive training and comprehensive clinical support in order to determine if this intervention changes the developmental trajectory of toddlers considered at high risk for developing autism.
Finally, the researchers will also be evaluating whether or not this intervention protocol is feasible and acceptable to parents.
Alice Carter, Ph.D.
University of Massachusetts, Boston
Helen Tager-Flusberg, Ph.D.
$1.2 million for three years
A Multi-Site Clinical Randomized Trial of the Hanen More than Words Intervention
This study will also use a parent-based intervention, but is unique in that it brings together three members of the Autism-Speaks High Risk Baby Siblings Research Consortium.
This group will investigate wither an established intervention, Hanen’s More than Words program, is effective in toddlers who have been identified as “at risk” for later diagnosis of autism.
The More than Words Program is group based and provides support, education and practical skills for parents of children at risk for autism spectrum disorders. Parents are taught to motivate the child to communicate, follow the child’s lead, create structured, fun, and predictable games that provide opportunities to reward successful conversational turn-taking, and adjust the way they speak to make it easier for their children to understand their language.
This intervention was selected based on theoretical and preliminary empirical evidence supporting its usefulness.
Hanen’s More than Words program is developmentally appropriate for use with families with a toddler, and sensitive to the needs of families. Although there is considerable variability in the services available across the regions from which participants will be drawn (Boston, Nashville, and Miami), the multi-site collaboration will support the usefulness of this program in a variety of environments in a standardized way and allow for more children to be enrolled in intervention trials at these sites.
Hanen’s More than Words Program is designed to complement one-on-one child therapy. The program builds on the premise that family factors, including parenting practices that enhance the child’s linguistic competence may be important predictors of long-term outcomes for children with a variety of disabilities.
The investigators will be looking at whether or not this intervention strategy improves outcome on child social communication, behavior problems, as well as parenting stress.
Annette Estes, Ph.D.
University of Washington, Seattle
Sally Rogers, Ph.D.
University of California, Davis
$900,000 for three years
Intervention for Children At-Risk for Autism
Two additional members of the High Risk Baby Siblings Research Consortium, Drs. Dawson and Rogers, have collaborated to develop a manualized intervention strategy that they have previously utilized for infants at risk of developing autism at an age as young as 12 months.
This strategy is based on the Early Start Denver Model. The manual used in this strategy has a strong parent training focus, including a parent manual that emphasizes skills that promote affective engagement and social reciprocity.
Preliminary results suggest that the Early Start Denver Model is effective for increasing language and cognitive ability in toddlers with autism. This project would utilize the adaptation of the Early Start Denver Model in two sites to symptomatic infants as young as 12-15 months of age, to study how this model compares to community-based-treatment “as usual” on social, affective and communication development as well as parental quality of life.
Utilizing a parent-delivery model is most likely a more appropriate modality for very young infants and their mothers, and can be utilized for a wider range of parents and infants than a clinician-based strategy. Collaboration of these two investigators allows this intervention to be assessed in at least 60 “at risk” infants to be studied.
Hanna Schertz, Ph.D.
University of Northern Colorado
Samuel Odom, Ph.D.
University of North Carolina at Chapel Hill
Kathleen Baggett, Ph.D.
University of Kansas
$968, 145 over 3 years
Promoting Early Social-communicative Competency in Toddlers with Autism
Children with autism show a characteristic deficit in the ability to coordinate interest in external objects or events with other people. This is referred to as joint attention, which typically develops between 9-15 months of age.
Based on this observation, these researchers will focus on a home based intervention protocol called the Joint Attention Mediated Learning (JAML) model to assess the relationship between the intervention and targeted child outcomes.
JAML incorporates research-based knowledge of early development in autism and the demonstrated importance of joint attention as a critical foundation for language, social, and cognitive development.
JAML also incorporates developmentally appropriate approaches, family centered principles, socially based learning, and infusion within natural routines to promote generalization.
Pediatricians, early intervention providers, and diagnostic clinics will identify potential participants, using autism screening protocols. With weekly guidance from trained, master’s level interventionists, parents will mediate child learning to promote joint attention through the JAML four-phase intervention protocol as operationalized in clinician and parent manuals.
The researchers will be examining the ability of the child to develop joint attention during early intervention and follow up. In light of well researched findings that joint attention predicts social-communicative competence in children with autism, this outcome measure is significant. Implementation and standardization across three sites will maximize access to participants and incorporate the expertise of three investigators, who each bring unique yet complementary abilities and skills to this project.
Connie Kasari, Ph.D.
University of California at Los Angeles
$899,061 for three years
Promoting Communication Skills in Toddlers at Risk for Autism
This research aims to identify causal factors that determine the developmental course of toddlers who have a “high risk” for autism (ASD). For this purpose we will evaluate the efficacy of an innovative parent education program that targets children’s communication skills in the context of parent-child play interactions. The intervention procedures are specifically tailored to the needs of toddlers between 18 and 24 months who show communication delays consistent with autism.
Across two research sites (UCLA: Connie Kasari, Hunter College/ CUNY: Michael Siller), eighty parent-child dyads will be recruited and randomly assigned to either the experimental intervention or a control condition.
Subjects assigned to the experimental group will participate in 12 home-based intervention sessions.
The experimental intervention is manualized, follows an illustrated workbook for parents, and uses individualized video-feedback, modeling, and coaching strategies to help parents establish play interactions that promote communication.
All participants take part in comprehensive baseline as well as 6- and 12-month follow up assessments. Families in the control group will also be invited to participate in an oral feedback session to discuss the results from these assessments.
Children’s involvement in other forms of intervention will be monitored using a validated intervention log so that the moderating effects of these treatments can be examined.
Because the intervention proposed in this research focuses on parent-child interactions, one aim is to evaluate whether the quality of these play interactions can be modified. Given the expectation that this can be accomplished, the study will also investigate the extent to which these modifications result in changes in child development as well as parental motivation, cognition, and affect.
Based on results from two long-term longitudinal studies of children with autism, we expect that improvements in the quality of parent-child play interactions will lead to improvements in non-verbal communication as well as the ability to understand and use spoken language.
Amy Wetherby, Ph.D.
Florida State University
Catherine Lord, Ph.D.
University of Michigan
$898,556 over 3 years
Effects of Parent-Implemented Intervention for Toddlers with Autism Spectrum Disorders
This project will directly compare two different interventions in families with a child at risk for developing autism at 18 months of age. The first is a parent-implemented intervention (PII) offered in 3 weekly sessions for 6 months.
It will teach parents how to embed strategies to support social communication skills for 25 hours a week within everyday activities. The second is an information, education and support group (IES) offered twice monthly for 6 months.
To make sure families have access to both intervention strategies, families who complete IES will also receive the more intensive PII beginning at 24 months of age. Specifically, this study will compare the effectiveness of PII and IES; and also to compare the effectiveness of entry in PII at 18 and 24 months of age.
This study will document growth trajectories for very young children with ASD receiving a manualized intervention that can be implemented by families. This minimizes involvement by clinicians and professionals, and therefore reduces the cost.
Child development in areas of social communication, adaptive and overall functioning, and specific symptoms of autism will be monitored until the child turns 3 years old.
Collaboration between sites ensures that enough children are studied to assess specific characteristics which predict response to intervention.
In addition, it will provide information and possibly evidence that supporting intervention beginning at 18 months leads to better outcomes than beginning at 24 months, supporting the need for early autism screening.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.