Asperger's syndrome is a neurodevelopmental condition characterized by significant difficulties in social interaction and nonverbal communication combined with restricted and repetitive patterns of behavior and interests. The syndrome has been merged with other conditions into autism spectrum disorder (ASD) and is no longer considered a stand-alone diagnosis. Often associated with chromosomal abnormalities or monogenic alterations, ASDs affect roughly 60 million people globally. One in 54 children in the United States is diagnosed with ASD. The diagnosis is higher in boys, with a male-to-female prevalence ratio of 3.5. There are no diagnostic markers for ASD, and the diagnosis is based on repetitive behaviors, impaired social communication and interaction.
Not a Disease, a Disability
Elon Musk reports that he has been diagnosed with Asperger’s syndrome. He is an entrepreneur who has become the richest man in the world and has had an impact on modern society second only to, perhaps, Thomas Edison. Musk is joined in his diagnosis by such celebrated individuals as Susan Boyle, Courtney Love, Dan Aykroyd, Daryl Hannah, Sir Anthony Hopkins, and Andy Warhol. In other words, people with Asperger’s struggle in social situations but often are talented, demonstrate an incredible rote memory, and often have high IQs. No two people with Asperger’s experience exactly the same symptoms. Each individual is different and unique.
We Just Didn’t Understand
Because of the wide variance in symptoms and absence of physical abnormalities, Asperger’s or ASD is hard to diagnose, and no one wants a cure. But, because of communication and social interaction deficits, adults with ASD have difficulty participating in the labor force and obtaining and holding appropriate professional positions. Even though individuals diagnosed on the spectrum do not have a disease, they do have a disability, and effective treatments can improve how someone with Asperger’s copes with social challenges, impulses, emotions, motor skill deficits, and other factors that might be impacting his or her life.
The social work community recognized that there was a serious lack of resources available for those suffering with this unusual disability that prevented sufferers from integrating into society. Social workers realized that the lack of resources and funding stemmed from an undervaluation of the need for long term care and a lack of understanding of how this spectrum of disorders can burden sufferers.
The Role of the Social Work Community
For the past ten years, the social work community has worked tirelessly to encourage the Social Security Administration to recognize conditions like autism as potentially disabling and qualify a guardian or child for Social Security Disability benefits through the Social Security Administration’s disability programs. Social workers help those on the spectrum and their caretakers who are seeking these benefits to research the various options and fill out the various forms. Since most of the applications are now located solely online, only in English or Spanish, families of lower socioeconomic status may not have the time, education, and other resources needed to apply for this assistance, which may leave a large portion of those with ASD without much-needed financial assistance and therapeutic resources.
Critical Disability Theory
In their attempt to get ASD and other disabilities recognized by the SSA and other support agencies, social work policy makers and educators developed an approach that came to be known as Critical Disability Theory (CDT)—the goal of which is to analyze disability as a cultural, historical, relative, social, and political phenomenon. The theory involves scrutinizing not bodily or mental impairments but the social norms that define particular attributes as impairments as well as the societal factors that connect specific communities with stigmatized attributes.
The therapeutic community believes that CDT should be utilized by all practitioners to diagnose and provide service to those with ASD effectively and efficiently. It’s recommended that communities and organizations evaluate, identify, and challenge social norms that lead to discrimination against those with ASD, evaluate accessibility factors influencing programming/social services for those with ASD, and utilize CDT to lobby for change and new legislation for funding people with ASD who are transitioning to adulthood.
The Bottom Line
These assessment tools and CDT would help shift the focus from adjusting the person with autism to fit an environment to adjusting the environment to fit the person with autism.