Interviewing People with Autism
Clinical psychologist Nancy Crown offers background and practical tips for interviewing subjects with autism and other developmental disabilities.
What is a Developmental Disability?
The term developmental disability refers to a group of conditions characterized by impairment in some area of functioning (e.g. physical, cognitive, social, learning, language.) According to the Center for Disease Control and Prevention, approximately one in six children in the United States have one or more developmental disabilities or delays. “Developmental” refers to the fact that the impairment is present from childhood and affects subsequent stages of growth. A “delay” may disappear over time with maturation or remediation, but disabilities tend to continue in some form throughout the lifespan. What follows are practical tips for ethically and effectively interviewing a person with an autism spectrum disorder.
The Autism Spectrum Disorders
These disorders are characterized by impairments in socialization, communication and cognitive flexibility. They are present either from birth or, in a small percentage of children, after a phase of apparently typical development. Autism occurs in every racial, ethnic and socioeconomic group. Once thought to be rare, the CDC currently estimates that one in 68 children are affected by the disorder, with boys receiving the diagnosis five times more often than girls. It is not clear how to understand the increase in the rate of diagnosis. It's likely that the increase is partially due to changes in how we define autism, along with greater awareness on the part of parents, teachers and mental health practitioners. Other factors that have been investigated include genetic influences, parental age, environmental toxins and du novo mutations in sperm or egg cells. It is generally agreed upon that autism does not have one single cause and that there may be many different “autisms” (Volkmar, Klin, Schultz & State, 2009). It is now widely understood that autism represents a variation in neuro-development that is not caused by any kind of parental failure, a once unfortunately popular view. (See e.g. Kanner, 1949; Bruno Bettelheim, 1967).
Implications for Interviewing
Depending on how severely someone is affected, even an adult with autism may not be his or her own legal guardian. As you would with a child who isn't 'of age', ask the person (or care-giver, if necessary) for consent. In many cases, it would be helpful to have someone who knows the individual well to help mediate the interview. It's important to think about whether and how your subject understands your questions, and someone familiar with him or her can help make this determination.
People with diagnoses on the autism spectrum typically have idiosyncratic communication styles. They can be associative, literal-minded, and quite sensitive. Many have difficulty contextualizing and may need you to provide a kind of “scaffold” for their remarks; that is, they may not include necessary information, such as who they are talking about, or when something occurred. It can be useful to ask for “the big picture” along with the details, or an account that includes “the beginning, the middle and the end.”
Many people with autism engage in repetitive movements, such as rocking back and forth or flapping their hands. The functions and meanings of these movements are wide-ranging, and beyond the scope of this tip sheet. People with autism tend to be fairly guileless, and by definition, have unconventional social judgment. If approached at the scene of a crime, for example, anxiety and/or communication difficulties may lead them to think they are in trouble. It's important to frame the interview by explaining its purpose, your role, and how you will use the information.
Many people on the spectrum have sensory sensitivities, meaning certain sounds, sights or tactile experiences are unpleasant or even overwhelming for them. For instance, if someone with autism witnessed a violent crime, it could be more distressing for them than for the average person to remember or talk about what they saw. Or, in the presence of loud noises, such as sirens, it may be utterly impossible for them to answer questions. (Even the hum of fluorescent lights or music that is barely audible to you can be disorienting for some people with autism.)
Most people with autism have an area or two about which they are highly knowledgeable and passionate. It may be hard for them to refrain from sharing what they know about their area of special interest. Sometimes, this is a comfort-seeking strategy in distressing, unfamiliar or otherwise anxiety provoking situations. It may be useful to let the person share his or her special interest first, or after a certain number of questions are answered, or if they seem to be agitated as sharing can help to calm them by turning to familiar ground.
- Though it may not seem so, the unusual movements or behaviors people with autism engage in are almost always meaningful and/or purposeful. For example, rocking from one foot to the other may calm a rattled nervous system or help someone with a faulty vestibular system feel more grounded. A meltdown might seem to come out of nowhere, but there is almost surely a trigger.
- People with autism spectrum disorders tend to be quite uneven in their abilities. They may be very intelligent, but completely non-verbal, or strong communicators, but have difficulty processing non-verbal information. Some are athletic and well coordinated while others have difficulty figuring out how to turn a key in a door or tie shoelaces. They may be calm and well organized in one setting but melt down when anxious or over-stimulated.
- In other words, like all of us, people on the spectrum have strengths and weaknesses, but their profiles are likely to be more extreme in variability than the average person. Most people with autism spectrum disorders do not have “savant” abilities enabling them to instantaneously make complex calculations, play a musical piece after hearing it once, or tell you what day your birthday will fall on in any given year.
- While certain commonalities are shared, the autism spectrum is populated by a very diverse and interesting group of people. If you have the opportunity to interview someone with autism, you might see things in an entirely new light.