The DSM V which was released to the public in May, 2013, took the controversial decision to consolidate the diagnosis of Asperger Syndrome, or High Functioning Autism (HFA), under the umbrella of Autism Spectrum Disorder (ASD). The particularism of Asperger Syndrome had provided a framework with which families affected by an autism diagnosis could think about their children with perhaps a more specific notion of how the lives of their diagnosed children might unfold. In the mid-nineties during the period when there appeared to be increased curiosity about this mysterious neurobiological condition, my son at age 24 received the diagnosis of Asperger Syndrome. As the years passed and he matured, I began to search for more information about autism. But what I discovered was while there was interest in the development of children on the spectrum and discussions about interventions as applied behavior analysis (ABA) pioneered by the clinical psychologist Ivar Lovass, there was scant information about an adult on the spectrum. In fact, the lack of valid statistical data about an adult with autism may explain why lawmakers, policymakers, and decision makers rarely took into account their special needs (Robison, 2018).
As a Mother of a 45-year-old son diagnosed with high functioning autism (HFA) I live in a state of fear, worry and anxiety about just what will happen to my son when I am no longer around to provide daily guidance, support and love. When I speak at conferences such as the Jerusalem Professional Forum (in October, 2018), an organization of professionals interested in research on subjects related to an autism spectrum diagnosis, about what motivated me to write my book: I Am Me: My Personal Journey with My Forty Plus Autistic Son (released in May, 2018), I describe what may be referred to as a “tsunami” – the nearly 50,000 children in the US alone who each year face an adult world so sadly unprepared to deal with the growing needs of the adult on the autism spectrum. I elaborate by commenting about the lack of empirical research, valid data, and ongoing resources committed to understanding the transition of care needs facing a growing aging autistic population: the senior citizen in our communities who is diagnosed with an autism spectrum.
We know that an increase in the prevalence rates of children diagnosed with autism indicate a trend which is unlikely to be reduced or even slowed down over the next decade (Halladay, 2018). When I was researching and writing my book, the generally accepted prevalence rate was one out of 68 children diagnosed as having an autism spectrum diagnosis. Today, nearly 5 years later, the Center for Disease Control, the federal agency in the US which supports health preparedness, charts the rate at 1 out of 59, a significant uptick in prevalence rates among children. It is interesting to note that global prevalence rates among children are being continuously updated, collected and analyzed; however, the data reflects the growth only among the young. No data to date exists on the prevalence rate among the adult population though, fortunately, there does appear to be a growing awareness and interest in the subject of the aging adult on the spectrum. After all, yesterday’s autistic child is today’s autistic adult. Temple Grandin, for example, one of the most well-known and respected speakers, writer and advocate for those on the autism spectrum, writes with passion and candor about the obstacles she faces as a professional diagnosed at a young age with autism. Today, in her seventies, she challenges her audiences to think about the multiple and unique needs of the aging adult. Dr. Tony Attwood, too, addressing a Conference in May, 2018, at the Eretz Israel Museum, “ASD/Asperger Syndrome – Aspects of Practice and Research” sponsored by the Israeli Asperger and HFASD Association (EFFIE), laments the current state of lack of reliable research about the aging adult with an autism spectrum diagnosis.
We have seemingly come a long distance from the days when the movie Rain Man, released in 1988 and starring Dustin Hoffman as an adult on the spectrum, first brought to the attention of the world the plights and challenges faced by a family affected by an autism spectrum diagnosis. Credited as addressing a taboo subject while raising the level of awareness of what autism as defined in the early eighties might look like, this movie received outstanding reviews. Hoffman won the Oscar for best actor for his dramatic portrayal of an autistic adult.
The process, then, of introducing the subject of autism to the general public by exploding myths and taboos and taking a serious, sensitive and reasonable approach to educating persons unfamiliar with an ASD requires time and commitment. I call this the 5 A’s process or 5 Steps, based on Stephen Shore’s paradigm presented in a paper he delivered at a conference in Bahrain, April 2, 2019. The model provides a framework which can help us understand the multiple challenges facing an autistic adult, while providing a basis to support and inform critical decisions about the future of the adult on the spectrum.
- Acknowledging a diagnosis of autism as a lifelong disability
- Accepting the limitations as well as the strengths
- Accommodating to the needs of the autistic adult
- Appreciating their potential to contribute to our society
- Applying what we know today about the autistic spectrum population to our aging population
With the concomitant limitations of solid research about this population, what must we do to apply what we do know today in an effort to ensure a smooth transition from adolescence to adulthood and from adulthood to aging? I suggest that transition of care topics include leisure and social opportunities, medical issues, housing options, employment and volunteer choices, and legal and ethical considerations. In addition to these transition of care needs, I suggest that there are 5 critical and overarching principles which might influence our best practices.
The first principle is to worry less about trying to cure them, fix them, and heal them or to make them neurotypical. They are not as adults and were not as children. Let us rather try to understand the experiences this population faces each and every day and to see beyond their sometimes strange and unconventional ways.
With the support systems in place, including family and communities, we can guide our aging autistic adult population to appreciate and apply the best they have to offer as older, more experienced autistic adults. For example, mentoring younger autistic adults, as Dr. Tony Attwood has suggested, is one wonderful way our aging adults can contribute to the world around them.
Second, we know that as this population ages, there is a tendency toward social isolation and loneliness (Hickey and Crabtree, 2018). Lowered life expectancy may also be an outcome of lack of social involvement (Vaillancourt, 2016). Dwindling financial support and community interest at the very time when it may be most needed to support the needs of the adult on the spectrum is a subject which Gottlieb (2015) addresses in his well-articulated NY Times editorial “Adult, Autistic and Ignored.” Life is fluid for us neurotypicals as well as for our autistic adults and change, something that those on the spectrum struggle with constantly, brings with it very human and predictable events such as sickness, loss and grieving. How to cope with these potentially overwhelming changes and emotions means we need to boost psychological services which must be made available and must be seen as simply one more treatment – planned and prepared in advance – so that our adult children are more able to adjust to the realities as they transition into adulthood and aging (Mazurek, 2014).
Third, in addition to boosting psychological services, we should deepen and extend social services to include regular visits from professionals associated with the social welfare system. The infrastructures for such services exist. Now we have to adapt and modify the infrastructure taking into account the special needs of this special population including research on topics of autism and ageing (Charlton, 2017).
A formalized, systematic and organized plan such as the private, for pay service proposed by The Asperger/Autism Network, AANE (2019) called the LifeNet Program promotes the awareness of the needs of the adult with autism by recognizing that the family may not be available when the aging autistic adult may be most needy. The program appears to hold promise as a creative solution to the question I raised about who will look after the needs of my forty+ son when I am no longer here.
Fourth, based on evidence-based studies beginning to emerge in the scientific community (Halladay, 2018), we now understand that there is reason to believe that the aging adult with autism may suffer from higher incidences of conditions as schizophrenia and Parkinson’s, as well as possibly a twenty times greater risk of anxiety and depression. We need therefore, to reach out to the caregivers, medical staff, and support service providers by initiating a campaign to educate, train, and prepare them so they are more comfortable and able to deal with the challenges that lie ahead as our autistic children become adults and then transition to senior citizens. An Adult Autistic Clinic at Mt. Sinai Hospital in Miami, Florida for example, is impressive in its scope, dedication and commitment to providing a full comprehensive service offered by professionals who understand adults with autism.
As the prevalence rate continues to increase in children, this trend clearly affects future support of our adults with autism. My fifth principle, then, is based on a reality that there needs to be an increase in resource allocations reflecting this upward trend of diagnosis. I am heartened by the push toward a greater commitment of resources as promoted by the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES), a primary source of federal funding for autism research, services, training and monitoring. Under the CARES ACT, lawmakers are looking to secure an additional $1 billion to ensure that for the first time, this allocation places an emphasis on the needs of adults with autism by adding the phrase “across the life span.”
To summarize I propose that these 5 principles serve as guidelines to help us plan for transition of care in a responsible, thoughtful and reasonable manner. Keeping in mind that an estimated 1% of the world population has been diagnosed with autism, it is essential that civil societies accept responsibility for their future wellbeing. We should worry less about fixing our adult children and concentrate more on recognizing their strengths; boost interventions such as psychological and social services; prepare those people tasked with taking good care of our aging children by enriching their knowledge base; and finally, work to influence decision makers to ensure that a proportionate increase in funding allocations reflects the clear and current increase in the prevalence rates of both children and adults. Our aging children deserve no less.
Dr. Marlene Ringler is a Ph.D. in English Language and Literature as well as a trained and certified teacher, CEO and founder of the international Ringler English Language Institute. Her company was recognized as a lead vendor for global training for multinationals including Toyota, Intel, IBM and Microsoft. She pioneered the concept of in-house training specifically in business settings. When living in the United States, Marlene was the co-coordinator of the English for Specific Purposes and English as a Second Language adult training programs for refugees and immigrants for Montgomery County Public Schools in Maryland. Her program was nominated for special recognition by the White House for its work in adult literacy. An advocate for persons with disabilities, Marlene encouraged people in school systems in the US and in Israel to develop programs for students who might not otherwise be able to function in a typical classroom. She counseled and guided teachers, administrators and parents to recognize the needs of the disabled population.
Today, Marlene works closely with service care providers to maximize the potential of the autistic population in a work setting. In addition, she counsels and advises parents about resources, opportunities, and the legal aspects of raising an autistic child to adulthood. Marlene and her family currently reside in Israel and sponsor, host, and organize conferences, social events, and gatherings in order to promote awareness about the needs of autistic adults.
For more information, please visit www.marleneringler.com.
References
Attwood, T. (1998). Asperger’s Syndrome: A Guide for Parents and Professionals. London: UK. Jessica Kingsley Publishers.
Charlton, R. (2017, September). Researching Autism and Ageing, Network Autism, UK.
Donvan, J and Zucker, C (2016). In a Different Key: The Story of Autism. New York, New York. Crown Publishers.
Gillot, A., and P.j. Standen. “Levels of Anxiety and Sources of Stress in Adults with Autism.” Journal of Intellectual Disabilities 11.4 (2007): 359-70. Web.
Gottlieb, E. 2015, September 5. Adult, Autistic and Ignored. The New York Times, Opinion.
Halladay, A. (2018) A 2018 Year of Review of Scientific Research. Autism Science Foundation, December 23, 2018.
Hickey, A. and Crabtree, J. (2018, February 2). Autism and Ageing: Loneliness and Isolation, National Autistic Society, Network Autism.
Mazurek, M. (2014, April 22). Loneliness, Friendship and Well-being in Adults with ASD, Interactive Autism Network (IAN).
Robison, J. (2018, September 2). Life, Love and Happiness for Autistic Adults-What Happens to Autistic People as they Age? Psychology Today.
Silberman, S. (2013) Neuro Tribes: The Legacy of Autism and the Future of Neurodiversity. New York, New York. Penguin Books.
Vaillancourt, M. (2016, April 2). It Is No Surprise That People with Autism Have a Low Life Expectancy. Independent Minds.
a much needed article which brings forward the point of challenges for a future with increasing population and longer life expectancy while comunities are without sought-out solutions.
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Why is she so worried about her 40+ son, especially if she considers him “high-functioning,” whatever that is. In spite of my diagnosis of ASD, type 2, my mom stopped “helicoptering” around me and rescuing me when I graduated high school. I also didn’t have the luxury of a transitional program after school ended. Now at age 41, I am in psychosocial rehabilitation, which isn’t even covered by insurance if you don’t have a co occurring mental illness diagnosis. If better supports were offered for the generation x and older, this mom might have written an entirely different book.