Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder

Getting a formal diagnosis for ASD

In order to establish a medical diagnosis of ASD, a full comprehensive evaluation is required. A formal evaluation, typically conducted by a psychiatric mental health clinician (i.e., psychologist, social worker, psychiatrist), incorporates patient interview, parent interview (if available), and clinical observations in an effort to obtain a whole picture of the adult’s developmental history, behaviors, and current symptoms. A cognitive abilities evaluation may also be part of a comprehensive diagnosis.

The most consistent way a trained clinician (most likely a PhD level psychologist) can evaluate and observe symptoms of ASD is through the administration of the Autism Diagnostic Observation Schedule – Second Edition (ADOS-2). The ADOS-2 is widely considered the gold standard and is a semi-structured, standardized assessment of communication, social interaction, play/imaginative use of materials, and restricted and repetitive behaviors for individuals who have been referred because of possible autism spectrum disorders. The ADOS-2 contains five assessment modules, which range from toddler to adult. Each module offers standardized activities using physical objects, or tangible props designed to elicit behaviors that are directly relevant to the diagnosis of ASD at different developmental levels and chronological ages.

It can sometimes be difficult to find a trained clinician to administer a comprehensive assessment to make or confirm a diagnosis of autism spectrum disorder. Getting in touch with the local Autism Alliance can be a helpful resource on a journey to a formal ASD diagnosis. Having a formal ASD diagnosis is critical for treatment planning.

About Autism Spectrum Disorder (ASD)

According to the Centers for Disease Control and Prevention (CDC), there are about 5.4 million adults ages 18 years and older in the United States with ASD, including 4.4 million men and 1 million women.

Individuals with ASD may think, communicate, and interact differently than others. Symptoms of ASD occur in three main domains: social interactions, verbal and nonverbal communication, and repetitive or ritualistic behaviors. Most people with ASD are diagnosed in early childhood; however, some people are not diagnosed until adulthood.

The adult with undiagnosed ASD may have a job and be managing at a basic level, although a diagnosis and treatment would help considerably. Making sense of previously unexplained difficulties has been vital in the lives of adults with symptoms of ASD. It can help individuals better understand themselves and how they interact with the world around them. A better understanding of ASD symptoms also helps the adult’s parents or loved ones to understand their behaviors.

Sometimes the diagnosis is delayed until adulthood because the person with ASD is very bright and is able to hold a job. In addition, many people, including some mental health professionals, perceive people with ASD as individuals who are invariably extremely impaired and unable to function at all in society. However, ASD is defined as a spectrum disorder. This means that individuals experience a variety of symptoms at different levels of severity. Symptoms also vary from individual to individual. For example, some people with the disorder have limited verbal communication and need a great deal of support from other people, while others with ASD need only moderate support.

There are also some individuals with ASD who need little support from others, and these are the individuals least likely to be diagnosed unless they were previously diagnosed in childhood. Yet this third category of individuals also needs some assistance, and a good starting point is understanding symptoms consistent with an ASD diagnosis.

Note that in the past, people with “high-functioning” ASD were often said to have Asperger’s syndrome, named after the late Austrian doctor who described the symptoms of ASD in boys who needed only low levels of support. Asperger reportedly experienced the symptoms of the disorder himself, in being physically and socially awkward but with a high intelligence. Individuals with high-functioning ASD may have very strong language skills but may struggle with socializing or making or maintaining friendships or have difficulty obtaining or keeping a job.

Another reason that some adults with ASD are not diagnosed until adulthood is because they were misdiagnosed with other disorders, most notably attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder, an anxiety disorder, or another condition. Complicating the issue further, the person with ASD may also actually have ADHD, OCD, or another disorder, although the ASD may be the primary problematic issue for the person.

Some researchers have found that the diagnosis of ASD in adulthood is more delayed in females than males, and also that women with ASD who did not have any language or intellectual disabilities are more likely than males to be misdiagnosed with another disorder.

What it looks like

Many mental health professionals concentrate on how ASD presents in childhood, and the presentation may be different in adulthood, although the underlying issues are similar. According to the authors of “The Truth About Autism in Adults,” there are multiple signs of ASD in adults, including the following:

• Difficulty or inability to interpret the body language of other people
• Interpreting language literally. Saying you could “eat a horse” may confuse or upset an adult with ASD, even though the person has learned the speaker does not plan on devouring an equine
• Frustration and difficulty with changes of plan. If the plan was to do X, the person with ASD will not wish to change the plan to Y without considerable discussion
• Social awkwardness and not knowing how to act with others
• Failure to engage in routine eye contact and body language interactions with others
• Frustration with accepting suggestions from others
• Difficulty or inability in understanding how other people think and feel
• Difficulty in adjusting social behavior, such as from a work situation to a social situation
• Talking too much and for too long on what interests him or herself and not realizing others have lost the thread
• Engaging in “stimming” behaviors when upset, such as rocking, flapping of the arms, hand clapping, hair twirling, and many other possible behaviors. These behaviors may help decrease distress
• Not realizing that the person should create a “Plan B” if the situation changes, whether the situation is minor or major. Not being able to follow the original plan can flummox the person with ASD unless they create a backup plan.

Researchers have also found that many adults with ASD have physical symptoms. For example, a majority of adults with ASD experience chronic gastrointestinal symptoms such as abdominal pain and diarrhea or constipation, as well as nausea and bloating. In addition, many adults with ASD report having a problem with insomnia. The underlying reasons for these issues are not yet well understood.

Other Psychiatric Symptoms

Many adults with ASD have other psychiatric diagnoses, particularly major depressive disorder (MDD), obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD). The current prevalence of depression was 23% among the adults with ASD.

Having ASD is nobody’s fault

People who struggle with ASD may have blamed themselves for years for their social awkwardness, sensory sensitivities, and limited range of interests. But ASD is no one’s fault, and its symptoms are extremely difficult to control without therapy or medications. Blaming oneself for having ASD is like blaming oneself for being too tall, having freckles, or having blue eyes. In addition, ASD may have been caused by a gene that was inherited from one or both a person with ASD’s parents. It’s not anyone’s fault.

Outlook

Without diagnosis and treatment of an adult’s ASD, the problematic behaviors and the lack of meaningful interactions with others likely will continue. But with treatment, many individuals with ASD can learn to understand and strengthen many of their symptoms and learn a lot of valuable skills to be more successful in relationships, at home, and at school or work.

In good company

Many prominent people reportedly have/had ASD, such as business mogul, entrepreneur, Elon Musk. Temple Grandin, known for revolutionizing the farming industry to be more humane. She reportedly did not speak until she was 3 ½ years old, but went on to earn a PhD in animal science and is a professor at Colorado State University. Actor Anthony Hopkins has ASD, as does singer Susan Boyle and actress Daryl Hannah.

The current thinking on what causes ASD

No one knows for sure what causes ASD, but it is known that there are genetic risks for the disorder. The Autism Genome Project analyzed genetic data from nearly 1,200 families in Europe and North America which included family members with autism. They identified at least five primary genes and 30 secondary genes that may be linked to the development of autism. They also noted that with a greater number of such genes, the person who inherited them has a higher risk for a more severe form of autism.

Some researchers have examined genes from parents and their children with ASD and have found genetic mutations in the children that were not present in the parents. Apparently a spontaneous genetic mutation occurred in the child, leading to the development of ASD. It is unknown how or why this mutation happened, although research is ongoing.