There is a lot we know about Autism Spectrum Disorders from evidence based research. But I think with all of the confusion of services, treatments and therapies, there remains much that we are still learning when working with adults on the spectrum.
I believe there is a genuine army of professionals and parents who are desperately trying to find ways to improve the quality of life, education, housing and work for those on the spectrum. I often find myself at a loss when parents ask me if this doesn’t work, what is the plan B. This is a tough question to answer since disability benefits and criteria to qualify are complicated and confusing, and fee-based residential programs are out of reach for many families, even those with resources. The sad fact is that many families are sacrificing their financial futures to purchase services for their adult children with autism.
I can’t remember the exact day that I decided I wanted to dedicate the rest of my career to working with adults on the spectrum. There is nothing more gratifying than helping these individuals and their families to overcome challenges and develop the skills necessary to lead the most productive and fulfilling life possible.
From all of my professional experiences working with adults on the autistic spectrum, I began to notice that the adults on the spectrum were an underserved population. Most of the services and research focused on children and I was anxious and determined to try a different approach that I felt could only help an individual, not hurt them. As a Life Skills and College Coach Specialist, I am not a researcher, per se. Twenty-five years ago, when I was in graduate school, I never considered pursuing the idea of the scientific aspect to psychology, counseling or social work. I understand and receive many psychometric tools and I can interpret and understand the outcomes and the effects on individuals on the spectrum and develop plans in those deficit areas. It is one thing to understand research-based therapies; but what happens when a client needs a different approach?
I always try conventional, evidence-based approaches with my clients, primarily cognitive behavioral strategies, and if they don’t work then “thinking outside the box” is a great strategy. If we could only quantify the challenges, the individual’s brain wiring, and the family dynamic that greatly interfaces with these folks. For example, during a recent visit to a client whose friend stays with him periodically and is a positive influence, our goal was to continue working on motivational, organizational, planning and problem-solving strategies related to a school project. The client’s guest happened to be in the other room also working on a project. So, I seized on the opportunity to “pull in” the friend as a motivational strategy, not knowing what to expect. What happened next was unexpected and resulted in what I would classify as a productive outcome.
The guest bemoaned his home life and expressed envy to his friend of all that he had (nice home, supportive family, etc.). The guest couldn’t understand why his friend was suffering. The host responded in an assertive and slightly reprimanding way by disclosing his internal and invisible challenges that he openly shared for the first time with his friend. He expressed that the “niceties” his guest observed were “meaningless” and “unimportant.” I was silently taken aback. This to me was a breakthrough that takes place when flexibility on my part and the risk of changing directions can occur.
Another example relates to a client who is applying for jobs for the first time. While he is an honor student in Math and Science, he did not understand the job seeking process from start to finish. We were working on online applications, interview skills, building a resume, etc. He thought that one applied for a job online and then sat back and waited for a phone call. At one place of business, there were no open positions, so he couldn’t apply online. Another did have an opening, so he was able to apply online. I assisted him with job skills and convinced him to visit to both job locations. On the one site, I spotted a woman who appeared to be a manager and approached her (modeling). She was receptive and asked him some questions. Two hours later he was called for an interview. What was striking were the things “neuro-typical individuals” take for granted in this process, and he was able to articulate this as we debriefed. He asked, “How did you know she was a manager? How did you know to approach her? How did you know what to ask?” (By the way, after submitting this article to Autism Spectrum News, this young man was called for an interview and soon after offered a position!).
Over the past 4 years, I have worked with nearly 30 clients privately, predominantly whose diagnosis is Asperger Syndrome. After first working with a few clients and assessing their specific needs, I was motivated to develop a program that took individuals who often lacked the interest in traditional therapies and/or who also had difficulty transferring behavioral and skill sets from an office setting to real life situations. Previously, I had been working with adults in a rehabilitation setting, mostly students on the autistic spectrum. Most of these clients were college-aged students who were having a great deal of difficulty finding success in college even though they had the intellectual capacity and interest in learning. Many of these individuals dropped out within the first semester. Other clients on the spectrum had difficulty with both finding and keeping jobs.
I began slowly, by going to the home of the families with adults living on the spectrum. In the rehabilitation and counseling setting, in an office, it did not seem like enough to translate social competencies just by learning, role play and then leaving the office to put the learned skills into practice on their own. It just made sense to me that these folks in many cases needed someone to tear down the skills into manageable parts and then go into the community, college setting, or agency and apply these skills. It also made sense to take the person into the community and teach with the assistance of those people willing to help, even if it was a momentary “teachable moment” (i.e. the hostess in the restaurant, the teacher in the classroom, the secretary, the cleaning crew etc…).
I always say to people there is the “bell curve” where the majority fall into the “normal distribution” but like any measure there are exceptions. I am not pretending to be a scientist, but experience was my research and my experiences showed me that the variance in those on the high functioning end of the spectrum is as broad as the spectrum itself. Some individuals on the spectrum have social and communication issues, others do not. Some are rigid and inflexible, others are flexible. And, some have global executive functioning issues and others have aspects of executive functioning issues.
One client that I worked with at first appeared extremely anti-social and limited in his communication issues when I first met him. As I spent more time with him I also found that he had anxiety issues that hampered his communication abilities as well as psychotic symptoms, upon which his therapist and I collaborated, to provide the best possible treatment outcomes. By thinking outside the box with both him and his family and considering their individual desired outcomes, we were able to improve his quality of life and prospects for the future. Today, he no longer demonstrates psychotic behavior, has lower anxiety, and is much more integrated into both his family and community. Another client was rejected from state developmental disability programs multiple times because testing deemed him too high functioning. Fortunately, he had a dedicated and persistent mother who pushed until he received the needed services. Though he now attends college and lives in the dorms (he was told it would never be possible) he still needs services. What professionals and the public sometimes miss are the hidden challenges and continued need for life long support. It does not mean that people with autism spectrum disorders can’t blend in with the professional and social world; they just need support at times to participate fully.
Last year at a local college forum on diversity and sensitivity training for faculty and students, “disability” was not included in the discussion of as a form of diversity. Amazingly, one young woman with a college degree is one of the more challenging clients that I work with, partly because she remains rigid and inflexible in her goals and thinking, and partly because her ability to consider another’s perspective is greatly impaired. She has difficulty accepting her diagnosis and the difficulties that come with it. These issues made college and finding employment after college very difficult. It is hard for perspective employers to deal with the issues of Aspergers; but think how different their perspectives might be if autism in high functioning adults were simply considered another type of “diversity.”
Things are changing for adults on the autistic spectrum with lightning speed. Yet, there remains a slowly growing tsunami of high school students on the spectrum who don’t have adequate transitional supports that have worked for them. I don’t disagree with evidence-based approaches, but, if actual artists only created based on past research we would be facing a generation of art that basically is uninspiring and far from the cutting edge. We have to try new things and not scare people into thinking that the only approaches that are effective are Evidence based. Don’t get me wrong, there is plenty of evidence in social scientific research that demonstrates the damage that can be done when people plow forward with wacky and destructive ideas that do more harm than good.
Susan M. Cortilet-Jones, MS, LMHC, is a Life Skills and College Coaching Specialist. To learn more, please visit www.DiscoveringYourWorld.com or contact Susan at (845) 406-8730.
