During all of the years since I was first diagnosed on the autism spectrum, support groups have been a constant part of my life in a variety of ways. Having attended, facilitated, and served in organizations that sponsored such groups, I came to appreciate their importance to those on the spectrum and to the autistic community as a whole.
The first autism support groups were exclusively for parents and caregivers of individuals, mainly children, on the autism spectrum who were in what is today considered the most severely impaired population. As the definition of autism was expanded to include a wider range of impairments, support groups for those on the spectrum, particularly adults, began to appear. These were typically facilitated by parents and family members of autistics who were sympathetic to and had direct experience with their challenges. Other groups were run by professionals (psychologists, social workers, speech-language pathologists, etc.) who had expert knowledge of autism and were usually paid for their services. More recently, however, peer-run groups facilitated by people actually on the spectrum have also appeared. The challenges of living with autism are best understood by those who have actually done so their entire lives, making them especially qualified to lead such groups. Also, as these groups expand in size they form a “critical mass” of people whose minds work in a similar manner and are more likely to encounter the same difficulties in various aspects of their lives. This in turn can lead to the creation of communities for individuals who otherwise have none to speak of.
When I was first diagnosed with Asperger Syndrome in August of 2000 at the age of 44, the first thing I did after receiving the diagnosis was to seek out a local support group in New York that I had found through an online search (the means by which I initially self-diagnosed). Upon arriving at my first meeting, I found myself surrounded by others to whom I immediately noticed uncanny similarities; these included atypical speech patterns, eye contact, mannerisms, and other behaviors. The experience was in many ways similar to that described by members of various racial and ethnic groups when they first visit their ancestral homelands and find a place dominated by people much like themselves. As I continued to attend this group, I found that, in every meeting, at least one thing (sometimes many) would be discussed that deeply resonated with my own life experiences; these ranged from unusual personal occurrences, events, and interests to serious life challenges that I had in common with the person describing them.
Although this group was first created and run by concerned family members of young people on the spectrum, the suggestion was eventually made that meetings should be facilitated by the Aspies who attended them. In this group, along with (independently) a few others throughout the U.S. (and possibly elsewhere), the notion of peer-run Aspie support was born. As more people were diagnosed, or suspected that they might be on the autism spectrum because of expanding media coverage, meeting attendance increased steadily. There was at least one support meeting every month, and each would center on a discussion topic of interest to adults living with autism. The best-attended were the ones dealing with dating and relationships as well as those concerning employment issues; other topics included disclosure and specialized interests, along with a wide variety of subjects. Also, when someone came to a meeting for the first time, they were given the opportunity to share about themselves and asked to describe their circumstances in regard to living situation (independent or otherwise), employment and occupation, and relationships.
In 2003, a proposal was made to create a network of Aspie support groups throughout the U.S., and even abroad, of the kind that the New York group had evolved into. Thus was born the Global and Regional Asperger Syndrome Partnership (GRASP), whose founding I had a role in along with Michael John Carley (who served as its executive director for many years) and three other members of our group. Similar groups were formed, one by one, in various parts of the U.S. The New York group continued to thrive, and at times even played a role in enhancing public awareness about Asperger Syndrome and the autism spectrum. Meetings were actually featured in two documentaries (one of which was nationally broadcast on public television), filmed by a crew from Japanese television, and even visited by a major movie star (I am not kidding!) who was preparing to play the role of an autistic person on the screen. We also hosted a number of journalists as well as journalism students (print and radio) who helped to spread the message about autism and our community. The most significant aspect of support groups, however, lies in providing an environment where people on the spectrum can share about their issues and challenges among others who can appreciate them, and feel comfortable doing so. In particular, they are often the first place outside of a clinical setting where a newly-diagnosed autistic person can go.
In 2009, after several years of regular attendance, I became a facilitator of the New York group, and did this for several years. Having no background whatsoever in psychology, medicine, or social services (I am an electronics engineer by education and profession), this was hardly a natural thing for me to do. Nevertheless, having lived a lifetime on the autism spectrum and come to understand its characteristics and challenges, I was able to be effective in that capacity; had I attempted this in any environment outside of the autism community, I am certain that I would have failed miserably. All of this convinced me that there is no substitute for life experience when it comes to understanding and appreciating what it means to live on the spectrum. As such, an autistic person is in a unique position to facilitate a group for other autistics.
Around this same time, a few enterprising members of the New York group decided to form a separate group that addressed the employment-related issues faced by so many in our community. After a while, however, its members realized that there was even greater interest in matters relating to socialization, to which the focus of the group was changed. Over time, the number of people attending this group continued to rise, which in turn helped foster a sense of community among Aspies in the New York area. Eventually, it evolved into a social group. Within a few years, a new organization emerged from the group, Aspies for Social Success (AFSS). Its objective is to provide support and social groups, as well as cultural and recreational activities, for adults on the autism spectrum. Activities have included visits to museums, theatrical performances, films, renaissance festivals, and other events. These can cater to the specialized interests and preferences of Aspies, or else serve to broaden their cultural horizons (which can in turn help enlarge social circles).
Socialization issues include getting along with others, being part of a group, meeting people, making friends, and finding and maintaining romantic relationships. As such, these constitute the most important challenges faced by many autistics because they are at the root of so many difficulties, most notably those concerning employment (the original focus of this group) and relationships. It is well-known that people on the autism spectrum have difficulties finding and keeping jobs mainly because of social deficits rather than lack of competence, poor attendance, theft, or other common workplace infractions.
Another area of concern in the autism community involves matters of sexuality. One misconception that unfortunately is far too common (even among professionals) is that autistics are asexual and not interested in romantic relationships. While there may be a small minority of autistics for whom this is true, I can assure you that it is generally not the case. Based on my experiences over the years, I am convinced that autistics face essentially the same issues regarding sexuality as any other population; in other words, we are as a group no different from everyone else. Where we do have considerable difficulty, however, is in finding and maintaining relationships. It is here that social deficits can present significant and even formidable challenges. This is probably the one aspect of life where the ability to read nonverbal social cues and to discern hidden curricula, not to mention hidden agendas, is of greatest importance. Autistics who have deficits in these areas will inevitably be at a great disadvantage.
All of these challenges are much easier to address in an environment where everyone has faced them, and Aspie support and social groups provide just this kind of environment. One problem that sometimes arises, however, is inappropriate behavior on the part of group members. There is a delicate balance between tolerance of such behaviors, the inappropriateness of which is either not understood or else an expression of anger at being mistreated and not accepted, while still maintaining an environment in which others are not made uncomfortable. These groups need to be a haven from the intolerance that Aspies so often encounter, but must also provide one in which they can all feel safe.
Groups like these are desperately needed by our community. Given the large numbers of undiagnosed autistics, this need will only become greater as public awareness of autism continues to grow and more adults are diagnosed. Organizing groups for autistics can present substantial challenges to a population that, in spite of a few notable exceptions, is generally not well-suited to such activities. Just as we benefit from the assistance and services of autism professionals, family members, friends, and others not on the spectrum, we will need help with some aspects of organizing communities for our people. Nevertheless, we should try to do as much for ourselves as we can. There is still much to be done.
For more information, Karl may be contacted at firstname.lastname@example.org.