Adaptive functioning in non intellectually disabled adults

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The idea that a high level of intelligence helps some autistic people in their daily lives crops up often in Hollywood depictions and casual conversation. The concept even has some scientific support. In the late 1960s and early 1970s, several researchers suggested that a high intelligence quotient (IQ) helps autistic people better engage in their communities, social interactions and education1,2,3.

In part because of this early work, IQ remains one of the most common ways to evaluate abilities among autistic people.

Yet we now know that it is not really possible to match IQ to a designated level of function. Relying on IQ and using labels such as ‘high functioning’ and ‘low functioning’ minimizes the daily difficulties encountered by all autistic individuals. It also can obscure considerable unmet needs. Or, as the autistic writer and advocate Laura Tisoncik eloquently put it: “The difference between high functioning and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.”

A better predictor for independence is the ability to meet daily demands, from managing a home to keeping a schedule and brushing one’s teeth — also called adaptive functioning. This is particularly true for autistic people who do not have intellectual disability. By failing to use adaptive functioning measures to assess everyday difficulties and identify support needs, we’re doing a disservice to a broad swath of the autism community.

In the most recent edition of psychiatry’s official guide, the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), there has been a shift away from IQ scores to measure the degree of intellectual disability. Instead, the DSM-5 uses age-standardized adaptive functioning scores to gauge functional needs. These scores encompass communication, interpersonal skills, social responsibility, personal care and safety — skills that enable independence in the face of changing environmental demands.

The trouble is, the DSM-5 only indicates using these assessments for autistic people who have intellectual disability. This leaves out those autistic people without intellectual disability who may benefit the most from using adaptive functioning as a measure of everyday skills and difficulties as well as potentially unmet needs. In these individuals, cognitive skill, as measured by their IQ score, is likely to mask the extent to which they struggle to meet everyday demands4.

This is true not only for adults, but also for children and adolescents, whose adaptive functioning gains may not keep pace with those of their neurotypical peers5. The gap between IQ and adaptive functioning may also be linked to mental-health risks, such as depression and anxiety, further supporting the idea that an average IQ doesn’t protect against all factors that can erode quality of life6.

Autobiographical accounts by adolescents and adults diagnosed with autism later in life reveal the consequences to mental health of many years of unmet adaptive needs. These individuals often feel they have failed on many fronts, because they lacked a support network to succeed7. If a person’s needs aren’t recognized, it’s difficult for her to realize that her perceived shortcomings are not her fault.

The research on adaptive functioning in autistic adults without intellectual disability is lacking in scope and depth. Perplexingly, studies of treatments rarely focus on adaptive skills for autistic people in adolescence and adulthood, though efforts conducted over the past year are beginning to rectify this8.

In addition, there is a critical need for a distinction between a lack of adaptive skills, the absence of appropriate supports such as accommodations and formal services, and general unmet needs. As a result, we can’t tease out whether poor outcomes are due to impairments, a lack of support, a combination of the two or something else entirely.