by Dr. Ami Klin
Individuals less knowledgeable about autism are likely to be struck by how persons with autism spectrum disorders differ, rather than how they are alike.
The variability is immense. From individuals who are burdened by severe to profound intellectual disabilities to persons who are gifted and more competent than most in the community. From those who cannot speak to those who are loquacious. From those whose isolation is manifest by complete social withdrawal to those who cannot stop approaching others albeit at times awkwardly. From persons who are enchained by self-stimulating movements, rituals and self-injurious behaviors to those whose knowledge about circumscribed areas of knowledge or special skills are prodigious.
These, at times extreme characteristics notwithstanding, all are people with emotions who can love and can be hurt, who need to meet the demands of everyday life, and who are desirous of independence and meaningful relationships. Some are in need of intensive supports, whereas others require little more than an equal opportunity community. All deserve a stab at happiness and a fulfilling life. Most can make contributions to society, whereas some can in fact build on their specific strengths and reach unique achievements in science, art and technology.
This extraordinary variability defies sweeping generalizations to be tagged to the entire community of individuals with autism spectrum disorders. It is, therefore, understandable that while some crave acceptance and integration, others crave meaningful supports and treatments. This diversity also calls for the notion that persons with social vulnerabilities are individuals first, distinct community second, and never stereotypes.
Active advocacy, therefore, needs to be tailored to whom the advocacy is for. For some, intensive interventions, amelioration of symptoms, increased independence and effective entitlements and respite are a must. For others, real opportunities in a world of employers that could (and must) capitalize on some of these individuals' singular strengths (which can include a variety of talents as well as loyalty, reliability and punctuality), is what is needed.
For families whose challenges are overwhelming, the search for cures, or at least, for more effective treatments, is a clear consensus. For individuals struggling to be accepted in their communities for their strengths rather than being ostracized for their differences, respect is the natural rallying cry.
In all instances, however, there is a need for greater awareness of the autism spectrum disorders; of the burdens to individuals and families in some cases, of the unique talents and capabilities in others. The whole community is enriched by this diversity. But this goal is conditioned by the collective respect for individual differences and for a realistic appraisal of what are the challenges and aspirations of each person and their families.
In all of these areas, the needs are great and knowledge is still limited. Although a new age of advocacy dawned some years ago, with much greater involvement of families and the affected individuals themselves, this work is still in its early stages, and our hopes for a different future depends to a great extent upon resources, increased awareness, and the availability of a great many more opportunities.
Ami Klin, Ph.D., is the Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center in New Haven, CT.
Editor's note: The opinions expressed herein are those of the author exclusively.
This article is part of a series on the issue of using the word "cure" in relation to autism. For more on the series, click here.