David Celiberti, Brian Fennell, Preeti Chojar, Franca Pastro, Sabrina Freeman, Mary Jane Weiss, and Vincent Winterling
As an organization, we have long been committed to the promotion of evidence-based practices for all individuals with autism across the lifespan. Because autism is typically a lifelong developmental disability, many individuals with autism have a myriad of needs that require attention across their lifetime. Determination of needs based upon severity and existing skill sets should be a crucial consideration in service planning.
Parents understandably worry about the futures of their adult children with autism, as many individuals face a loss of services (i.e., receive minimal or no services through adult service agencies) when they graduate from school programs. Families also face difficulty in their attempts to identify providers, match interests to available programs and services, or understand how to navigate new and complex adult service delivery systems.
When families begin the process of arranging for services for their adult children, they face an immediate and sometimes overwhelming realization that much of what they know has become obsolete in this new environment and no longer relevant in the context of adult needs and service provision options. These concerns may be compounded by the reality that service provision for children in some countries may have been mandated by law for children (such as in the United States) and these entitlements and laws are no longer applicable in the adult services world. Thus, the need to remain a savvy and informed consumer as they attempt to navigate the adult world and a commitment to science remain paramount and continue to be the foundation of decisions and choices regarding programs, treatments, and other issues in the lives of adults with autism.
Although the research evidence continues to grow for best practices for young children with autism, the autism community is challenged by a shortage of professionals with expertise in working with adults, a lack of choice for employment opportunities, and a shortage of innovative living arrangements for the generation of people with autism now reaching adulthood. Furthermore, while there is research literature to guide intervention planning, it too must be accessed by families to ensure successful implementation, as few studies have been published that focus on the issues facing adult learners with autism. Therefore, it is critical to learn about transition planning to ensure optimal success, the highest possible quality of life, and continued growth of individuals with autism throughout their lives. It is also important to share innovative data- based approaches to increase dialogue and highlight innovative models for intervention.
It is our hope that this article serves to provide a comprehensive list of resources offered to families and service providers of adolescents and adults with autism. We anticipate this list of offerings will continue to grow and with it an expansion of opportunities for adults with autism. The links presented here focus on solutions to a variety of challenges including increasing independence, developing safety skills, augmenting employment opportunities, increasing community integration, and managing sexuality, as well as other topics of interest to family members and service providers who work with this population of teenagers and adults. Increasingly, attention is also focused on outcomes such as happiness and quality of life which are difficult to define. In addition, in the future we very much look forward to sharing new, innovative ideas that are currently in development.
We would like to take this opportunity to share details about five important ASAT initiatives that may be helpful to you as a parent of an adult or an older child facing the transition to adulthood:
- ASAT publishes a monthly newsletter, Science in Autism Treatment, containing reviews of published research, books, and consumer resources (e.g., training videos, websites, or resource lists like this one on ‘bullying’), interviews with leaders in the field of autism treatment for older children and adults, as well as parent advocates, answers to questions about important clinical issues related to treatment, tips to differentiate evidence-based options from others marketed as panaceas, and more. In addition, you can find links to the current newsletter, Science in Autism Treatment, as well as past issues in the Archived Newsletters section. You can subscribe for free here.
- ASAT’s website (www.asatonline.org) provides valuable information regarding how parents can evaluate the evidence supporting various treatment options. ASAT regularly updates treatment descriptions and research summaries so readers may access timely information about the current state of autism intervention research in an easy-to-read format. Our website also contains book reviews, interviews, topical articles, information to assist with a variety of clinical issues, and pages specific to parents of older children and adults. These Lifespan Suggested Articles include a review of bullying resources because individuals with autism may be effected by bullying even in adulthood, ABA for older learners, and messages of support from others on the same journey. You can also find a list of relevant books here. Some of these titles have been reviewed by us
- ASAT’s Media Watch monitors mainstream media to identify published information about autism and autism treatments. Understanding that every media contribution has the potential to reach thousands of consumers and service providers, we support accurate media depictions of empirically sound interventions. We also respond to inaccurate information of proposed treatments reported and, at times, promulgated by news outlets. Parents can review our 150+ published letters as models of professional interaction with journalists and media outlets.
- We maintain an active Facebook page to help readers better understand the scope of evidence-based practice available and to remain apprised of how autism treatment is being represented in the media.
- We offer Perspectives, which showcases articles and interviews from passionate and dedicated parents of adults with autism who relate their triumphs and challenges in implementing science -based treatment at home, school and in the community (for example, this web-based resource list for adults with autism). Readers can follow the journeys of parents as they share innovative ways to help their young adults with many common difficulties: transitioning to adulthood, developing vocational skills and creating novel models of employment, reaching greater community and school inclusion, dealing with safety issues, pursuing effective interventions as well as increasing awareness in their communities.
In the remainder of this article, we would like to highlight a few of our efforts in greater detail as they related to older children and adults with autism, as well as their family members and providers.
Media Watch: Links to Adult Services
As stated above, we respond to accurate and inaccurate representations of ABA in the media and endeavor to help consumers better appreciate the research evidence, relevance, and scope of science-based treatments. Many of our Media Watch letters address older children and adults with autism, and focus on topics such as employment, transition from school, and other lifespan challenges. Below is a sample of some of the articles.
- ASAT Responds to Triblive.com’s “Pa. Autism Services Hope to make inroads in workplace”
- ASAT Responds to MSNBC’s “1 in 3 autistic young adults lack jobs education”
Transition from School
- ASAT Responds to FoxPhilly.com’s “Parents of Autistic Children Worry What Life Will Bring When They’re Adults”
- ASAT Responds to Portland Press-Herald’s “Graduating to an Uncertain Fate”
- ASAT Responds to Psychologytoday.com’s “NJ’s I/DD community strongly opposes the state’s transition plan: now what?”
- ASAT Responds to abc.news.go.com’s “How A Child With Autism Became ‘His Own Man’ After Treatment”
- ASAT Responds to Des Moines Register’s “Autistic man struggles in Iowa’s mental health system
- ASAT Responds to TheStar.com’s “Groundbreaking adult autism survey reveals mountain of unmet needs”
- ASAT Responds to News.com.au’s “Cost of autistic children cripples parents up to $50,000 a year”
Awareness and Advocacy
- ASAT Responds to The Washington Post’s, “Nowhere to Go: Young People with Severe Autism Languish Weeks or Longer in Hospitals”
- ASAT Responds to Gulf News’, “Reality of living with autism in UAE”
- ASAT Responds to niyitabiti.net’s, “I Was Called a Witch and My Husband Quickly Divorced Me – Oritoke Aluko – Olukun”
- ASAT Responds to Psychology Today.com’s “Making Severe Autism Visible”
- ASAT Responds to Good Housekeeping’s, “Costco is Hosting Sensory-Friendly Shopping Hours for People with Autism”
Clinical Corner and Research Synopsis: Focus on Adult Transition Issues
We discuss many clinical matters related to older children and adults in our Clinical Corner columns targeting a wide array of topics such as promoting independence, IEP goal development for adulthood, employment, safety skills, bullying, addressing sexuality, participating in religious services, supporting siblings, as well as general use of ABA for older children.
We review published research as part of our Research Summaries effort, and highlight its relevance and importance within autism treatment. Some examples related to older children and adults include:
- Classroom application of functional analysis
- Parent-assisted social skills training to improve friendships in teens with autism spectrum disorders
- Post-high school service use among young adults with an autism spectrum disorder
- Epidemiology of autism spectrum disorders in adults in the community in England
- Cognitive behavioral therapy for anxiety in children with ASD
We interview prominent behavior analysts from across the globe around common themes of service delivery, certification, dissemination, and access to behavior analytic treatment. Recent interviews have included Linda Meyer, EdD, BCBA-D and Jeffrey Jacob, BCBA. We have also interviewed consumers of behavior analytic services who are parents of young adults including: Sabrina Freeman, Preeti Chojar, Cyndy Hayes, Barbara Wells, Barbara McLeod, Beverley Sharpe, Robyn Schneider, and Catherine Maurice, author of Let Me Hear Y our Voice, among others such as siblings, Alexandra Penzi and Leigh Broughan, and Connor Archer and his mother Jessica.
ASAT Reviews of Transition Resources
A series of reviews, previously published by ASAT, can be found with embedded links below. These guides can be a valuable tool for parents, care providers, and family members, as well as older individuals with autism as they seek to inform themselves of the crucial next steps to effective services for adults with autism. Beginning with an overview of the wide range of transition services, these resources can direct each reader in the direction that most suits their needs based on personal circumstances, topics of interest, depth of knowledge required, and current level of understanding.
- A review of Transition Resources for Adolescents and Adults with Autism: This article is a good jumping off point for parents with adult children on the spectrum or those who may be in the early stages of future planning. The links contained in this review are expansive and help start the process of information gathering across the vast field of transition services. These resources are provided by a variety of groups including Autism Speaks, US Department of Education, and many others.
- A review of Life Journey Through Autism: A Guide for Transition to Adulthood: This article reviews the resources provided by the Organization for Autism Research (OAR) as a guide to parents assessing autism treatments based on research evidence. While this resource may be dated (it was published in 2003), the information about the scientific process and research, especially the glossary, are still helpful to increase understanding in this area.
- A review of Working in the Community: A Guide for Employers of Individuals with Autism Spectrum Disorders: A resource published by The Alpine Learning Group, this document is billed as a guide to foster relationships between transition professionals and community businesses. Parents will find this resource helpful when working towards employment and/or internship opportunities for their own adult with autism.
- A review of Adults with Autism: The Journey Home: This documentary, produced by the Princeton Child Development Institute, tells the stories of four adults with autism receiving behavior analytic services. Through interviews with parents and individuals with autism as well as footage that depicts actual intervention from childhood into adulthood, this documentary celebrates a wide range of positive outcomes that are a direct result of scientifically validated ABA intervention and offers valuable insights for families.
We hope will find many of these offerings useful in this next chapter of your journey. Please be sure you are subscribed to our newsletter as we have much upcoming content related to older children and adults such as interviews, clinical corners responses, and research synopses. We also have a number of lifespan resources that we will be reviewing soon.
Citation for this article:
Celiberti, D., Fennell, B., Chojar, P., Pastro, F., Freeman, S., Weiss, M. J., & Winterling, V. (2017). How ASAT Supports Parents of Older Children and Adults Science in Autism Treatment, 14(4), 26-29.