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On spectrum and in life

"Are you on spectrum?" This question is being asked a lot these days, and frequently the answer from adults is "Yes."  The problem is that although research on autism spectrum disorders (ASDs) in children has progressed rapidly over the last few decades, that on adults is just beginning.

There are good resons why researchers have focused on diagnosing and treating children with autism, Asperger's Disease and other related conditions on a "spectrum" of disorders. These developmental disorders generally surface in the first few years of life and affect the brain's normal development of social and communication skills. Intervention must be early and vigorous. So far researchers have not found a cause or cure, but have created a range of possible treatments and learning techniques for children.

The phrase "couple of decades" is the important one here. As children on spectrum become adults on spectrum, more and more are going to college, getting jobs and having relationships and family lives. Some of the younger adults are adapting the techniques and therapies from their childhoods to continue with life, but there are a significant number of people on spectrum who were born too soon or in the wrong place to be diagnosed. Further, some adults who know they are on spectrum do not want any more "help." As one young man on spectrum said recently, "I'm happy as I am. Leave me alone."

So resources about adults with autism spectrum disorders are late, scarce and iffy. This is especially the case with employment. Rare are corporate human resource departments with an ASD specialist, even though in one woman's opinion, "almost everyone [in her high-tech firm] acts like they have ASD." This is an area of research that is wide-open, and begging for solid work.

Even higher education, the primary source of studies and research, is searching for what to do to meet specific needs. Those of us in the  community who have the privilege of working with students on spectrum pounce on whatever data is available and apply it where we can. We work with students on spectrum as individuals and tailor lessons to their needs, but we need more information to improve our sensitivity and knowledge. Some useful articles include Hendricks and Wehman, "Transition from School to Adulthood for Youth with Autism Spectrum Disorders" in Review and Recommendations in Focus on Autism and Other Developmental Disabilities, v24 n2 p77-88, 2009, ISSN:1088-3576; Alpern and Zager, "Addressing Communication Needs of Young Adults with Autism in a College-Based Inclusion Program" in Education and Training in Developmental Disabilities, v42 n4 p428-436, Dec 2007, ISSN:1547-0350; and Taylor, "Teaching Students with Autistic Spectrum Disorders in Higher Education" in Education & Training, v47 n7 p484-495, Sep 2005, ISSN:0040-0912; as good as these are, they are not enough.

As for family life and relationships, those on spectrum are often their own best resources. For example, Emilia Murray Ramey and her husband Jody John Ramey have written a fabulous book, Autistics' Guide to Dating: A Book By Autistics, For Autistics and Those Who Love Them or Who Are in Love with Them (2008, Jessica Kingsley Publisher), which deals with friendship, courtship, marriage and family life. Even so, more people with ASD need to write about their experiences.

This is where you come in. Check out local institutions of post-secondary learning to see what kinds of provisions they have made for those  with ASDs, and lend your support if you can. Write to your representatives at local, state and federal levels so schools and corporations can get the funding and support they need to help those with ASDs make transitions to employment and education. And check out (for Autism Illinois, which works for those on spectrum across the life span), (for The Autism Program of Illinois, an educational consortium which works with children and their families), or (for Easter Seals Metropolitan Chicago, which conducts research and has built a new school for those on spectrum). Not only are these worthy associations helping those with ASD and their loved ones, but they are primary sources about symptoms, treatment and research. Whether or not they can lead you to information about your own place on the spectrum, support them.

Most of all, encourage those you know with ASD to be a resource. Because ASD varies from individual to individual, as many individuals as possible need to share what it is to be an adult and on spectrum.