“If you’ve met one person with autism, you’ve met one person with autism”, Dr. Stephen Shore, an expert on autism who is a person with autism has said. In my opinion, this quote captures much of the difficulty professionals and lay people alike have in understanding and defining autism. This is why the Diagnostic and Statistical Manual of Mental Disorders (DSM – the official manual used by professionals to diagnose their patients) has changed its names for the diagnosis several times over the years. In the past, the DSM has included Asperger’s Disorder, High Functioning Autism, and Pervasive Developmental Disorder- Not Otherwise Specified as separate diagnoses. Because no one has been able to specify differences accurately and reliably between these diagnoses, they have all been lumped together in the latest DSM (DSM-V) under the category of Autism Spectrum Disorder (ASD). The problem with this solution, of course, is that many parents and other people can become upset upon hearing that they or their child is autistic. The word “autism” often brings to mind thoughts of severely impaired people who can’t have any social relationships or a normal life and are considered to be very odd by the world at large. However, autism is said to occur on a spectrum for a reason, and the spectrum is very wide. Some people with autism would fit the above description. But many people with autism function much more closely to what is most familiar to most people as (what used to be known as) Asperger’s Disorder. In other words, they can have friends, have an active social life, get married, have families, and work at a fulfilling job.
This is not to say that people with autism have no difficulties getting through life at all. One of the primary characteristics of an ASD is significant difficulty with social interactions. People with autism often prefer to be alone or to have minimal contact with other people, and they may become overwhelmed in crowds or situations where there is a lot going on. They can have difficulty completely understanding what is happening in social interactions, especially when the interactions are subtle or indirect, are not always sure whether they should be talking or listening and may have trouble deciding what is OK to say and what is not. Their interests are often limited, and they may have difficulty knowing when other people are getting bored with hearing about these interests. They may have trouble reading nonverbal communication such as body language, facial expressions, tone of voice, etc. They may not get jokes.
Needless to say, these difficulties can lead to a great deal of anxiety. Some bright people with autism make a point of observing, studying, and copying how other people behave, allowing them to successfully mask their social limitations. Although this helps them to function and to succeed socially, they often continue to have the anxiety. Women and girls with autism tend to have better social skills and better nonverbal communication than men and boys with autism. They are less likely to exhibit behavioral problems, their repetitive behaviors are more likely to be subtle, and their restricted interests are more likely to be in the mainstream. It is important to know that social skills can be taught.
People with autism also tend to be inflexible, and to have difficulty coping with novelty and change, preferring sameness, predictability, and routines. They can be extremely good at some things and abysmally bad at other things which one would expect would be easy for them. They tend to ask questions that no one else would think to ask and that are hard to answer. Sometimes they become very upset by things which do not bother most other people. They often have sensory sensitivities, being unduly bothered by certain noises or smells, the feel of certain clothing, and the textures of certain foods. They often exhibit the thinking and information processing characteristics of a person with the unofficial diagnosis of Nonverbal Learning Disability (NLD – explained at greater length elsewhere on this website).
In short, people with autism can be very confusing to themselves and to others around them. They often get referred to me for testing because other people are mystified. I’ve been a psychologist for a long time, and I have never seen anyone who entirely fit the DSM-V Autism Spectrum Diagnosis or all of the profile that I outlined above. This makes things even more confusing. Neuropsychological testing can provide a picture of which aspects of an autism spectrum diagnosis apply to the given person and which do not. It can go a long way to helping other people understand the person with autism’s particular needs. Once you understand this, it is easier to find resources, coping strategies, and work-arounds.