Perkins School for the Blind Transition Center

Filling the Gaps: Developing Programs for the Lifespan

The number of children being diagnosed with autism spectrum disorders (ASD) has, without a doubt, been increasing rapidly over the past 20 years. The increase can be attributed to several factors, a few of which make it clear that many children with autism spectrum disorders went undiagnosed in the past. Why is this? Where are these individuals now? What can we do to fill gaps in services to meet the needs of this older population of individuals? What do we need to have available to meet the future needs of children being diagnosed today with an autism spectrum disorder?

There are many reasons why more children today are being diagnosed with autism compared to the number identified previously. One factor that has contributed significantly to the increase is that our knowledge base of signs and symptoms of autism spectrum disorders has increased. One only needs to do an internet search on “autism” and find an endless number of websites filled with information. Not only are families more savvy in terms of awareness of differences in their child, but professionals are more knowledgeable as well. The result is two-fold: more parents today demand assessments of their child at an earlier age and more professionals are adept at recognizing and diagnosing the condition. The DSM-IV classification of autism has broadened as well, offering the ability to diagnose autism as part of a continuum of severity or “spectrum”. By broadening the definition, more individuals fit the diagnosis. Additionally, psychologists and medical doctors have become more aware of the signs and symptoms of an autistic spectrum disorder, therefore more readily recognizing and diagnosing the condition.

While this addresses the needs of children today, there remain large numbers of adults living and working in the community who were misdiagnosed or undiagnosed as children. We face questions regarding the reality of these individuals who are now adults. Could it be that they were given another type of diagnosis such as mental retardation, attention deficit disorder, depression, impulse control disorder or an anxiety disorder? Who are these adults? Are they the students who are able to do well academically but are completely overwhelmed when trying to navigate the unfamiliar new social world of college? Are they the individuals who were able to graduate from a university but do not have the social aptitude to get past an interview and obtain appropriate employment? Can we find them in our judicial system or our jails? Do we find them unable to access state services for people with disabilities? Are they at home being supported by their parents, who themselves have not been given adequate resources to help their children?

We are facing a complex problem of finding ways to support families as they face the challenges of having a child on the autism spectrum and address the needs of adults who may have been overlooked as being on the spectrum as youngsters. There are many questions but the most important one to ask is what can we do to help this older population of individuals who, if they were children today, would be diagnosed with an autism spectrum disorder. First and foremost, information and education are key. We must continue to educate school personnel, therapists, physicians, first responders and employers on signs, symptoms and unique characteristics of individuals with autism spectrum disorders. We must recognize and put into place supportive programs that will provide the necessary anchors for those with autism spectrum disorders throughout the lifespan. Supportive programs need to be developed that begin during school and continue throughout a student’s transition beyond high school. Social service agencies and schools need to recognize the importance of providing comfortable, structured, social outlets for these individuals to both meet others who share in their experiences and learn the social skills necessary for successful integration into the community.

Westchester Jewish Community Services (WJCS) opened an Autism Family Center (AFC) in December 2006 with funding from UJA-Federation of New York. The AFC is a community of families (parents, grandparents, extended family, spouses and siblings) living with or affected by an individual(s) with an autism spectrum disorder who join together on a formal and informal basis to build emotional and social supports as they face the challenges of autism. Additionally, the AFC serves as a centralized information and referral resource. Through our work of compiling information about resources available in Westchester County for individuals with autism, it became apparent that gaps in services existed, particularly for adults. As a result of identifying a lack of services for adults with Asperger’s or high functioning autism, two programs were developed.

The Breakfast and Supper Clubs, funded by the Daniel Jordan Fiddle Foundation and the Elaine Gorbach Levine Charitable Foundation, offer adults a welcoming environment where they can meet others who share their difficulties with initiating conversations, understanding social cues, maintaining employment and ultimately socializing. These individuals now have the opportunity, which they did not have in the past, to enjoy breakfast or dinner while connecting with others and developing social skills.

Both of these newly developed groups filled up quickly after local schools, agencies, therapists, and families were informed about the program. The Breakfast Club meets monthly and is made up of older adults with Asperger’s. Group members struggle with building friendships, forming romantic relationships and finding appropriate employment. The participants also want to learn more about what it means to have Asperger’s syndrome. The young adult Supper Club meets monthly as well, whose members experience many difficulties transitioning into college or employment. Like the older adults, they also long for the intimate relationships in which typical peers their age are involved.

For many of the groups’ members, this is the first time they have connected with someone else who is “like them.” They can share feelings with someone who understands and meet others with the same diagnosis. It is the first time they are talking about what it is like to feel as if you are an outsider wanting to be let in. They share stories about being the target of many jokes growing up or feeling like their parents always viewed them as failures. They discuss the “what ifs.” “What if my parents found out sooner? Maybe I would be better off.” “Maybe if my parents knew more about Asperger’s they would’ve understood why things were so hard for me.” Because of the Breakfast and Supper Clubs, they are no longer alone in their thoughts and in their worlds. Friendships have begun to form and, at a minimum, they each know that once every month they have a place to come where they are not an outsider and are always free to be themselves.

Recognizing that there are many adults today who went undiagnosed and untreated, WJCS’ Autism Family Center offers original programs to help adults with autism spectrum disorders build upon their strengths, improve communication and develop connections with others. Just as programs are being developed for children diagnosed with an autism spectrum disorder, attention needs to be given to forming opportunities for adults diagnosed with the disorder who have had very little support in their formative years. The WJCS Autism Family Center recognizes this gap and is working with the community to create more programs, like the Breakfast and Supper Clubs that meet the needs of this unique and underserved population. There is much work to be done.

Kristen Macaluso, MS is Program Coordinator of the WJCS Autism Family Center, and Patricia Grossman, LCSW is the Program Director of the WJCS Out Patient Services for the Developmentally Disabled.

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