Every year, hundreds of thousands of children with Autism Spectrum Disorder (ASD) are entering adulthood. Unfortunately, opportunities for many of these young adults are few and far between. In fact, the estimated unemployment rate for adults with ASD is an incredible 90%.
That fact alone should make us ask, “what can we do to help children with ASD gain the necessary skills to grown into productive young adults?”
The answer, of course, is that there is much we can—and should—do to help. And as you’ll see in this paper, it all begins with early intervention and intensive services.
Why the “sudden” prevalence in ASD diagnoses?
More children than ever are being diagnosed with ASD. In fact, a 2018 issue of Pediatrics estimates as many as 1 in 40. That is an increase of more than 40% since as recently as 2012… and an unfathomable increase from the 1 in 10,000 diagnosed with ASD back in the 1980s. The reasons for this prevalence are many.
For example, many children and young adults who were initially diagnosed with ADHD, anxiety and other behavioral disorders are now recognized as having ASD. Greater awareness of the symptoms of ASD on the part of pediatricians, education professionals and even parents has certainly contributed.
Also, the advanced precision of medical and behavioral testing has helped us be more accurate in identifying disabilities, and many children and young adults who had been solely identified with intellectual disabilities are now being diagnosed as having ASD.
On the plus side, all of this increased awareness has given us the opportunity to diagnose and begin treatment for ASD sufferers as early as age 2—and it has been proven time and again that the earlier treatment begins, the better the outcome. This prevalence of ASD diagnoses has also made treatment more available to more people as providers, medical professionals and parents recognize the need for these services.
That being said, we still face one enormous task in treating ASD…
The children have support… but what about the young adults?
Over the next decade, nearly 500,000 teens will enter adulthood after aging out of school-based autism programs. Less than half of these teens will find work or enroll in higher education within 2 years of graduating from high school. Nearly 50% will turn 25 without ever holding a paying job. These frustrations often lead to a host of other complications, including depression and poor social interactions. This raises serious concerns about current treatment outcomes.
Emerging research indicates that the most effective way to treat this group is with less intense and more specifically targeted treatment programs—ideally programs with specific objectives and goals to achieve. This targeted treatment approach is focused directly on those manifestations of autism that hold the individual back from enjoying more autonomy and being an involved, contributing member of the community.
Treatment can vary drastically in terms of structure, generalization and adaptability to environment, depending on the severity of the case.
- Structure: This can be a setting with deliberately minimalized variables that might interfere with or hamper the treatment, such as a clinic or workshop. It may also be a setting that is less controlled and more natural that can provide a variety of stimuli—including workplaces, community area or even homes.
- Generalization: This depends more greatly on the severity of the diagnostic features. The goals would range from establishing basic skills to naturalizing their implementation. Then, as the patient shows competence at establishing learning repertoires, the treatment goals focus on integrating those new skills into everyday life and social interactions.
- Adaptability: As an ability to learn and integrate skills into new environments is displayed, treatment shifts to higher levels of conceptual reasoning and adaptability. Patients may move from a typical Applied Behavior Analysis (ABA) program to an integrated mental health approach that relies on cognitive behavioral therapy and social skill development.
Unfortunately, too few young adults get that kind of treatment
While there are a growing number of treatment centers for small children diagnosed with ASD, the resources for teens and young adults remain scarce. In fact, teens with ASD have access to much less care than those with other disabilities. Add to that a shortage of care providers nationwide, and the outlook for these young adults can be less than optimal. What’s more, the few facilities that offer services to teens and young adults often offer a narrower scope of treatments than is ideal (for example, few target sexual awareness or relationship development—an often critical issue for teens). As a result, too few young adults with ASD have the skills to participate in community activities. They also have a decreased likelihood of living independently compared with people their age who have learning, intellectual or emotional disabilities. And we’ve already covered the dismal employment statistics for this group.
So, how can we move forward and be better prepared to help this oncoming tsunami? At Alternative Behavioral Strategies, we’ve adopted the philosophy that the most successful way to help these young adults begins well before they reach this stage of their life… and continues into—and beyond—their initiation as productive members of their communities.
Toddlers and small children
Decades of research has established that the intensity of ABA treatment is a key element to helping a child make lasting gains.
- Intensive treatment modalities. Cognitive functioning, listener and speaker communication and socialization are of prime importance here. Early learner skills taught through specific learning techniques –including Discrete Trial Training, Verbal Behavior, Pivotal Response Training, Conditional Discrimination Training, Natural Environment Teaching—are very effective.
- Focused treatment modalities. For patients with fewer deficits, treatments are typically focused on social engagement and adaptability. The goals are more targeted (i.e., increased inclusions. The intensity is reduced, but the treatment still requires a dense schedule of engagement (15-20 hours of targeted intervention). The incorporation of peers, community, and social opportunities is also part of the treatment.
Older children and adolescents
Addressing the needs for this group necessitates a comprehensive, but highly targeted treatment approach. We can break this down into what we consider the five most important areas:
- Functional living and basic life skills. This aspect will utilize very slow progression and marginal skill development to reduce severe maladaptive behavior, reduce their medical needs, and increase their capacity for self-determination.
- Social understanding and awareness. Improving how they interact with their peers by giving them a positive awareness/perception of themselves.
- Vocational integration. Targeting the skills they need to master to function in a workplace setting.
- Relationship and sexual awareness. Focusing on the skills necessary to develop positive relationships with a healthy attitude about their own sexuality.
- Mental health services. It is equally important to develop an integrated care system that addresses the high rates of depression and anxiety for adults with autism.
The ideal treatment delivery modality for this group would be consultative with a high value placed on empowering the individual and the community stakeholders—addressing fewer goals and focusing on time limited treatment, allowing for increased autonomy and self-determination with continued access to consultative services to address social complexities.
What milestones should a person with ASD strive towards as they get older?
Obviously, each child’s needs are unique, and it is impossible to give a blanket quantification for successful treatment. However decades of research and experience can give us general guidelines as to what a treatment program should deliver. Here are some examples:
Favorable outcomes for a child that experiences severe developmental delays might include:
- Integration into school and community environments by age 6
- Reduced level of intensity of supports; with core skill sets to learn new behaviors established
- The emergence of adaptive functioning skills
- Development of a social community
Favorable outcomes for a child that experiences less severe developmental delays might include:
- Succeeding in mainstreamed classroom at school
- Establishing a community network (sports, clubs, social community built)
- Requiring minimal additional supports; typically to navigate and prepare for more advanced social situations/reasoning (e.g., relationships, social nuance, complex interactions and emotions)
- Diagnostic symptoms no longer clinically impact daily life
Adults/adolescents with severe developmental delays might make goals that range from:
- Ability to function with community supports
- Aggressive or severely interruptive behavior minimized or non-existent
- Contributor in some vocational opportunity
- Facilitated relationships and the commencing of semi-autonomous living
- Private daily living tasks managed in absence of supports
Finally, adults/adolescents with less severe developmental delays might make goals that can range from:
- Established relationships and friendships
- Success in school and work environments
- Less risk for co-morbid mental health issues (e.g., anxiety, depression, etc.)
- Very few and very targeted therapeutic services
- Unlimited potential for success in virtually any career chosen
Together, we can meet this challenge
Treating the symptoms of ASD—and helping millions of children and young adults lead more productive, inclusionary lives—is a responsibility we all take seriously. The dramatic rise in the prevalence of ASD diagnoses are an urgent public health challenge that will be met victoriously only if we strive to make sure all children with ASD get the support they need as early as possible.
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About Jeffrey William Skibitsky
Jeffrey (Jeff) William Skibitsky, MA, BCBA, LBA, is founder and president of Alternative Behavior Strategies (ABS). Headquartered in Salt Lake City, ABS, an accredited member of Behavioral Health Center of Excellence (BHCOE), was founded in 2011 and has grown to become a leading provider of services to children with Autism Spectrum Disorders (ASD). Today, the company has locations in California, Utah and North Carolina. It works with a team of more than 300 clinicians across multiple sites and clinics.
Sources:
How Common Is Autism. (n.d.) Retrieved from https://autismsciencefoundation.org/what-is-autism/how-common-is-autism/
Anderson K., Shattuck P., Cooper B., Roux A., & Wagner M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an Autism Spectrum Disorder. Autism, 18(5):562–570. doi: https://dx.doi.org/10.1177%2F1362361313481860
Brown H.K., Diepstra H., Isaacs B., Lunksy Y., McGarry C., Weiss J.A., & Wilton A.S. (2018). Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder. J Autism Dev Disord., 48(1):36-44. Doi: https://doi.org/10.1007/s10803-017-3292-0
Cooper B., Narendorf S.C., Shattuck P.T., Sterzing P.R., Taylor JL., & Wagner M. (2012). Postsecondary education and employment among youth with an Autism Spectrum Disorder. Pediatrics, 129(6):1042–1049. Retrieved from https://www.aappublications.org/
Anderson C., Lupfer A., Shattuck P.T. (2018). Barriers to Receipt of Services for Young Adults With Autism. Pediatrics, 141(4). Retrieved from https://www.aappublications.org/
Ke F., Whalon K., & Yun J. (2018). Social Skill Interventions for Youth and Adults With Autism Spectrum Disorder: A Systematic Review. Sage Journals, 88(1): 3-42. Doi: https://doi.org/10.3102%2F0034654317740334
