Review of Adults with Autism: The Journey Home

Lawrence, C. D. (Director), & Machold, P., Machold, R., & Fenske, E. (Producers). (2015). Adults with Autism: The Journey Home [Motion picture on DVD]. United States: Princeton Child Development Institute.

Reviewed by

Alana Vogl, MEd, BCBA
and
Daniela Fazzio, PhD, BCBA-D

All too often the emphasis on early intervention for young children with autism means that there is little attention paid to the services and lives of adults on the autism spectrum. This can leave many families of adolescents and young adults with autism scrambling to find services and options for living situations, employment, and leisure activities that ensure a quality of life well into adulthood.

The Princeton Child Development Institute (PCDI) has created a compelling documentary that tells the stories of four adults with autism receiving Applied Behavior Analysis services. Through interviews with parents and individuals with autism as well as videos that show what ABA services look like from childhood into adulthood, the documentary captures a wide range of positive outcomes that are a direct result of scientifically validated ABA interventions.

The most critical take-aways of the film for parents, practitioners, and the general public are:

• Clear and definitive assertion that ABA is the only validated treatment for individuals with autism.
• Data collection is an essential component of any effective ABA program and parents should review data regularly with interventionists to observe progress.
• An analogy with physicians’ use of data in the form of lab tests, weight, and blood pressure to inform decisions about medications and treatments illustrate why data collection is an equally important part of ABA interventions.
• That individuals with autism should be described in terms of their abilities, rather than disabilities.
• Accurately describes the progression from childhood to adulthood and how long it can take behavioral changes to occur.
• Adults can continue to learn and develop skills and may continue to require support in the workplace to ensure that new skills are acquired.
• Targeting life skills that will be needed throughout adulthood begins early with skills such as responding to name, following a schedule, and appropriate eating.
• Choosing a work placement should not just be based on proficiency with tasks, but also based on the individual’s preferences (an example in the film of how to conduct such a work place preference assessment may be helpful for those working with adolescents and adults).
• While there is a range of outcomes for individuals with autism and not every individual will live and work 100% independently, every individual has the ability to make progress and develop skills.

Furthermore, specific attention should be paid to the way that the film positions parents in authority as essential team members. By having them describe procedures and how important data collection and data based decision making was to ensure their child’s progress, the film gives weight to family’s involvement. The parents’ accurate descriptions of procedures using non-technical language is an important reminder to practitioners that parents must be integrally involved in the intervention from the beginning. Additionally, these examples provide a strong message to parents that their involvement and understanding of their child’s intervention is a critical component to ensure generalization and maintenance of learned behaviors and skills and ultimately will impact the outcomes.

The documentary is accompanied by an additional DVD titled, “Additional Insights” which contains chapters that expand on topics presented within the documentary, many times with the parents featured telling additional anecdotes related to their journey through the diagnosis, intervention, parent training and making important decisions regarding the transition into adulthood. These chapters are described below.

Diagnosing Autism: Parents give a historical perspective of receiving an autism diagnoses 25 years ago when ASD was less common and pediatricians weren’t as familiar with the signs and when there were less books and resources available.

Ed Fenske, retired Executive Director of PCDI provides another example of the difference between the medical model of intervention and a behavioral model of intervention in which data drives the decision making and the evaluation of the effectiveness of the intervention.

What to expect from ABA: Dr. Gregory S. MacDuff, Executive Director of PCDI explains that while there is no cure for autism, with effective ABA services, every individual can make progress and learn new skills and improve the quality of their life.

Understanding ABA: Dr. MacDuff shares the belief that those opposed to behavioral services hold that ABA programs create robots. He carefully dismantles this idea by explaining that when done correctly, behavioral services should teach so individuals are responding to the same cues and their behavior is maintained by similar contingencies as anyone else.

ABA from a parent’s perspective: Another example of parents clearly and expertly describing the science of ABA and the rationale for utilizing behavioral services instead of other treatments that are not evidence-based by describing examples of progress that came out of systematic instruction.

The importance of language: Mr. Fenske explains the value of teaching functional language skills, how to expand language over time, and the need to target language as a social skill.

The power of activity schedules: Parents descript a concrete teaching strategy that increases independence and the amount of time individuals spend engaged in productive activities and leisure skills.

Preparing for adulthood: Mr. Fenske shares the outcome that 40% of children who receive early intensive interventions with PCDI are mainstreamed in public school and the remaining 60% of children continue to need services through PCDI until age 22. Mr. Fenske’s impresses upon parents that unlike the school age process, at age 22 parents will need to be the ones to seek out and identify adult services that their child will need in order to be as independent as possible. He also stresses that targeting skills that individuals will need in adulthood earlier will benefit Dr. MacDuff outlines what the PCDI adult program looks like, giving parents aspects to look for when searching for programs. These include: a small ratio of staff to individuals (2:1), staff that are fully trained and college educated, interviewing employers prior to placement, and pre-training individuals with specific works tasks that they will be responsible for in the work setting.

Furthermore, he stresses that a vocational placement should be based on an individual’s interests and what they are good at with the understanding that these may change over time.

Preparing for public outings: Parents describe the challenges of taking a child with autism into different community settings, such as church, movies, mall, super market due to sensitivity to sounds.

Using principles of applied behavior analysis such as positive reinforcement in the form of token boards and behavioral contracts parents explain how learning how to implement these tools led to an increase in appropriate behaviors in the community and the ability to participate in the community.

Preparing for residential options: Parents discuss the decision making progress around having their child transition out of the home or remain in their home into adulthood. Parents relate the fear and anxiety that may arise when considering residential options due to concerns regarding safety, but also the happiness that comes from having a child with autism experience the “typical” adult transition to living outside of the home.

Mr. Fenske’s perspective that group homes should be seen as intensive learning environments to target life skills that will facilitate the most independent living possible, is valuable for parents considering this option for their children. Ideally, progress with skills targeted in a group home setting should then create the opportunity for different, more independent living situations. Safety
concerns should be mediated by actively teaching how to respond to situations that do not occur on a regular basis.

Autism in other countries: Cultural norms and the currently accepted science and healthcare systems within different countries dictate the treatment options with ABA services not available in many countries.

Advice for parents: Parents of older adults with autism give hope to those who are just receiving an autism diagnosis for their son or daughter due to the current availability of ABA services.

In summary, we believe that Adults with Autism: The Journey Home is a valuable film for both families and practitioners to view. It is a reminder of the powerful resources the field of ABA has change individuals and families’ quality of life. While it may be a film that families of adolescents or adults on the autism spectrum are drawn to, it should be recommended to families at early stages as a tool to understand the importance of using scientifically validated interventions as a direct correlation to outcomes that will impact their child throughout all stages of life.

Citation for this article:

Vogl, A., & Fazzio, D. (2016). Consumer Corner: Adults with Autism: The Journey Home. Science in Autism Treatment, 13(4), 24-27.