It has been six years since I first wrote on the topic of evidence-based behavioral health treatment for adults diagnosed with autism spectrum disorder (ASD). I would like to revisit this subject to address progress in the field. Without substantive data to help guide behavioral and therapeutic treatment, the research and scientific communities are still working to develop methods for gathering evidence to help address the growing needs of adults with ASD. Thus, insight on how to help these adults remains “paper thin” (Carpenter, 2015). For the stakeholders (e.g. autistic adults, parents, educators, healthcare providers, the mental health and rehabilitation communities, etc.), we are seeing an accelerated focus on identifying the needs of autistic adults since research has been largely focused on genetics and early intervention.
Often by the time individuals with ASD reach adulthood, they have developed a learned distrust of healthcare professionals in response to failed treatment interventions and misdiagnoses. During the years I have worked with adults, I have come to realize that successful outcomes only occur when a trusting relationship exists between the provider and client, as each person will often possess unique characteristics critical to understanding and implementing a treatment plan. In 2012, the Missouri Department of Mental Health recommended in a guide that evidence-based practices “include consideration of individual characteristics.” Further, it recommends that clinicians should not make treatment decisions based “solely on scientific evidence and professional expertise,” but, rather should be “made in the context of the strengths, concerns, values, and preferences of the person with ASD and his or her support network” (Interventions, 2012).
An outcome of growing up having mostly negative experiences often results in distrust towards professionals working with autistic adults. One client when presented with multiple opportunities related to their goals, for many years patently responds with, “I don’t believe you.” This individual like many others has a lifelong history of failed interventions and limited progress in adulthood stemming from earlier experiences. Currently, in addition to understanding the basic needs of adults with autism, those of us working with this population including self-advocates, parents, policy-makers, employers and others recognize what I consider a looming public health crisis if we don’t dedicate resources to helping these individuals.
It is important to mention that not all adults with autism and their families seek or need services. There are those who have navigated their way through life without need for supports and are satisfied with their “differentness.” A family member shared a description given to them by their adult child: We are a “pragmatic tribe” (referencing Steve Silberman’s book Neurotribes: The Legacy of Autism and the Future of Neurodiversity) (Silberman, 2015). This autistic individual and their family approach the strengths and challenges associated with autism not as an overarching deficit, but rather as their collective and individual identity. Additionally, the Autistic Self Advocacy Network (ASAN) co-founded by Ari Ne’eman, is advancing the self-advocacy movement by ensuring that “autistic people enjoy the same access, rights, and opportunities as all other citizens” (Autistic Self Advocacy Network (ASAN), 2016).
As a therapist and life-skills coach, the general focus in coaching or therapy is geared towards a process of growth and achievement of goals. A priority for the therapist should consistently be a therapeutic approach that is “client-centered” and focuses the individual towards internalizing skills and developing ownership towards a greater sense of independence, self-worth and dignity. Progress towards goals, which can be short or long term, is heavily dependent on improving personal insight, adapting life skills, and collaborating the needs of caretakers, the client, therapist and all supports. All parties must recognize that the intent is not to “change” the adult to fit the needs of their family, friends, etc., but rather to help clients internalize skills that secure a sense of self-worth and dignity.
Although I often direct clients and families to written material, support groups and seminars, parents are especially overwhelmed and frankly tired after years of advocating for their children in school with doctors, therapists, psychiatrists and many others. The lack of understanding and the changing definitions of autism (i.e. Pervasive Developmental Disorder (PDD), Asperger, Autism Spectrum Disorder (ASD)) adds to the confusion of understanding what autism means for adults. Some clients embrace their differences and the diagnosis while others resent labels. One client whose interests and strengths are in the arts, refers to their diagnosis as “Spinart.” Adults associated within the growing self-advocacy community use terms such as autism spectrum disorders, autism and neurodiversity interchangeably.
Inevitably, the first call I receive from a referral source (most often the parent) is one in which they feel that efforts have been exhausted with prior treatments. They emphasize that their child is “high functioning” and “so smart” followed with frustration that their child can’t get employment, that their son or daughter lacks “motivation,” or that they spend all of their time on the computer or in the bedroom. Clearly, technology is an essential tool for all of us (in many cases, tools developed by individuals with autism), but for many adults with autism, it has contributed to their delay in social interaction and personal development. Frequently, there is frustration and confusion since the adult with ASD has completed high school or has an associates, bachelor’s or advanced degree in college. The parents and child relay the feeling that their previous interaction with “experts” (i.e. Vocational rehabilitation, psychiatrists, pediatricians and academic personnel) has contributed to a lower sense of self-worth, anger, frustration and increased social isolation. Finally, professionals driven by privacy laws often focus their attention squarely on the client without consideration of loved ones, even when both agree that the family system needs help.
A significant number of clients received an autism diagnosis in adolescence or later (a few into their 50’s). Early in therapy a pattern emerges with descriptions such as: “Joey has no friends;” “Alice paces back in forth in her room and talks to herself;” “Frankie is mentally challenged;” “Sarah doesn’t interact with anyone and is SO BRIGHT;” and “I’m upset because Joy hides in her room and doesn’t interact with the family.” Years ago, I was invited to a home with a young adult who experienced multiple diagnosis throughout their life. This individual presented as withdrawn and was described as socially isolated. Even during the intake, doubt was presented about the accuracy of an autism diagnosis. The meeting started with a parent describing me as their “Annie Sullivan.” Many intakes include variations of this message with the underlying message that their adult child needs to be “fixed;” that what they understand of autism is that it is an illness or defect. Partnering with the client and family, we focus on changing this mindset.
Another often destructive myth is the notion that the individual is lazy and lacks motivation. Poor motivation has its own stigma and I often see this being confused with “inability to take initiative.” Difficulty with taking initiative correlates with difficulty in everyday transitions that most people take for granted. For example, initiating conversation, interacting with people, calling to set up an interview, and constant changes in settings throughout the day are difficult. Without understanding concepts like initiative and transitions, many adults experience resistance to change and a sense of failure. Distinguishing between initiative and motivation, adults with autism are inspired by the fact that the difficulties associated with initiative change their sense of worth away from negative labels like lazy and unmotivated. With increased insight, the client learns cognitive tools and strategies to improve their ability to be independent in their goals and decision-making.
One common misperception of autism is that it manifests as one broad issue. Not everyone with autism experiences the same challenges associated with socialization, obsessive thinking, anxiety, etc. For example, many people think that difficulty with social interaction equates with social isolation. On the contrary, many adults with autism enjoy socialization but have difficulty interacting within societal norms. Sometimes resistance to social interaction is not rejection of social interaction; rather it is the result of environmental and sensory experiences (lights, sound, voices, crowds, being touched, etc.).
A unique and specific example associated with sensory difficulty is that of an adult who experiences a painful reaction to words and phrases. Words to this individual have texture but the experience results in pain, self-loathing and self-injury. Causing a sort of paralysis, this individual describes their experience as preventing them from taking initiative outside of their comfort zone: “I am the only person” that suffers from this “horrible thing” and “that’s why I can’t get a job.” Negative, painful and uncomfortable sensory experiences can result in extreme stress.
Obsessive and perseverative thinking varies widely in presentation and is another disabling experience for many individuals with autism. Over the years, I have come up with a visual of these thought patterns and refer to a video of a hamster running on a wheel. The hamster wheel represents repeatedly becoming stuck on a thought (e.g., “I will never have a girlfriend;” “I don’t believe you…why should I believe you?”, “It’s not nice to look at a pretty girl…I’ll go to jail”). In spite of strategies designed to help with obsessive and perseverative thinking, it is extremely difficult and challenging to help an individual extinguish, channel and/or eliminate these thoughts.
While many people will read my insights with sympathy, I want to emphasize that my impressions for the reader should not leave one with the idea that individuals with autism should or want to be pitied. After years of working with adults, I believe that without a better understanding, we are denying adults with autism and ourselves the incredible potential they have to offer. One of the biggest changes is the growing number of adults with autism leading the way to greater inclusion and empowerment by promoting the valuable contributions they have to offer society. It is a moral imperative that we continue to learn and understand the challenges that individuals with autism experience, but also recognize the growing role of self-advocacy. We have a responsibility as a society to support opportunity in the workplace, educational communities and society at large.
For more information, please contact Susan at susan.cortilet@gmail.com, (845) 406-8730 or visit www.discoveringyourworld.com.
References
Autistic Self Advocacy Network (ASAN). (2016, February 28). Our History. Retrieved from www.autisticadvocacy.org/home/about-asan/
Carpenter, S. (2015, February 10). Adults with autism are left to navigate a jarring world. Science News, 187.
Cortilet, S. (2010). Thinking Out of the Box: Modifying Evidence Based Approaches to Fit the Needs of Adults on the Autism Spectrum. Autism Spectrum News.
Dr. Valerie Gaus, P. (2007). Cognitive-Behavioral Therapy for Adult Asperger Syndrome. New York: The Guilford Press.
Interventions, A. S.-b. (2012). retrieved from http://autismguidelines.dmh.mo.gov/documents/Interventions.pdf. Retrieved from Missouri Autism Guidelines Initiative: autismguidelines.dmh.mo.gov
Silberman, S. (2015). Neurotribes: The Legacy of Autism and the Future of Neurodiversity. New York: Penguin Random House LLC.
