How High Functioning Autism Is Diagnosed in Adults
You've never really grasped small talk, and would rather talk to a computer than another human being. Does that mean you have Asperger Syndrome(AS)? Actually, since the publication of the latest diagnostic criteria, there is no longer a diagnosis called Asperger Syndrome. But it is perfectly possible that you are an adult who is diagnosable with a relatively mild (high functioning) form of autism spectrum disorder (or a similar or related disorder).
Symptoms
If you're an adult who has managed to make it through high school or even college and get or hold a job (even with symptoms that might be associated with autism), chances are your autism is relatively mild. "Mild" or high functioning autism, however, can be extremely challenging. That's because most of the symptoms relate to social communication and sensory responses—and if you're out of your home in the 21st-century world, you're required to engage socially and cope with a huge range of sensory assaults in almost every environment.
Social Communication Symptoms
These are some of the symptoms you may encounter on a daily basis. They may also be symptoms you experienced as a young child but learned to manage over time. They may include:
- Difficulty with interpreting the "hidden agenda" in a social situation. For example, everyone but you seems to somehow know when to speak, when to be quiet, what to wear, what tone of voice to use.
- Difficulty with using the right level or tone of voice, or choosing the "right" words for a situation. For example, you might use formal language in an informal situation, speak too loudly in a "quiet" situation, or use a very flat tone when you're actually feeling strong emotions.
- Having trouble interpreting body language and vocal tone correctly. For example, someone you find attractive smiles as they pass, or invites you to join them in a group outing. Does that mean they're expressing romantic interest or simple friendship? Does your boss's tone indicate real anger or sarcasm?
- Challenges with keeping up a conversation, especially if it's not on a subject that interests you. Neurotypical people usually find it easy to keep up "small talk" on any number of situations, from TV shows to gossip. They can do this even if the show or the people are only mildly interesting to them. People with autism, however, usually prefer to talk at length only about subjects that interest them personally; they may also have trouble noticing that their conversational partner is bored.
- Extreme focus on a topic of interest. Some adults with autism are so fascinated by a particular topic of interest that they find it almost impossible to change the subject. This can be an invisible problem if your friends and workmates all share the same interest but can become an issue when you're interacting with family or neighbors who have different interests.
- Difficulty with knowing when and how to ask questions or make statements you know to be true. For example, when is it ok to tell your boss that their ideas won't work? Is it ever ok to ask someone "what caused your divorce?" People with autism find it tough to know when to speak up; as a result, they may choose to say nothing at all.
- Difficulty with change. Most people with autism prefer to know exactly what's going to happen next. Many prefer to do the same things in the same order each day, eat the same foods, take the same routes, etc. Life, however, throws a lot of curve balls; it can be tough for autistic people to make quick changes without great effort or emotional upset.
Sensory and Behavioral Symptoms
The most recent criteria for autism include sensory challenges that are common to all people on the spectrum. Sensory challenges (along with the social challenges described above) can lead to unexpected behaviors.
- Sensitivity to light, sound, smell, touch, and taste. Like many people with other disorders (such as migraine), people with autism are unusually sensitive. While most neurotypical people, for example, can spend all day under fluorescent lights in a loud environment, most people with autism can't. Autistic people may also react strongly to smell or taste, or have a hard time with physical intimacy.
- Need for physical pressure for calming. Temple Grandin, a major figure in autistic self-advocacy, actually built herself a "squeeze machine" as a way to help herself to stay calm in college.
- Need to move or vocalize in usual ways. This need, called "stimming," is a form of self-calming and may involve pacing, rocking, hair-twirling, humming, etc. It's difficult to control and can result in uncomfortable stares from the people around you.
- Autistic melt-downs. Some adults with autism, even those with very high IQs, can become very frustrated and upset and find it impossible to control their words and actions. This response is sometimes called an "autistic melt-down." While it's rare for an adult with autism to act out in a violent way, even non-violent melt-downs can be frightening to the people who witness them.
Self-Tests and Professional Evaluations
You can start the process of diagnosis with a self-test such as the "AQ" designed in 2001 by Dr. Simon Baron-Cohen or the RBQ2, available online, which "measures restricted and repetitive behaviors such as routines and rituals, repetitive motor behaviors, sensory interests and repetitive actions with objects."
While these self-tests can help you determine whether you might be autistic, however, they're not a substitute for a medical diagnosis performed by a professional. Most psychiatrists with autism experience should be able to administer appropriate tests and provide a useful diagnosis, though the majority of people with autism experience do work with children.
Dr. Shana Nichols of the Fay J. Lindner Center for Autism on Long Island in New York specializes in diagnosing and treating teens and adults with the symptoms associated with high functioning autism (Asperger Syndrome).
When adults come to the Lindner Center for a diagnosis, Dr. Nichols begins her exam with an IQ test. She also administers an assessment of adaptive skills which tests the patient's ability to manage complex social situations.
While she uses several specific diagnostic tools to identify specific symptoms, she says that even those tools are somewhat out of date.
"If a parent is available," says Nichols, "we administer a parent interview called the ADI (Autism Diagnostic Interview-Revised). We're looking at current functioning and early history to get a sense of the patient's skills in social, communication and behavior domains." After all, as she says, "autism doesn't suddenly show up when you're 25, so most people with true autism showed symptoms throughout their childhood." If parents aren't available, Nichols and her colleagues ask the patient to recall their childhood, asking such questions as "Did you have a lot of friends?" and "What did you enjoy doing?"
Nichols also administers the ADOS Module IV. ADOS (Autism Diagnosis Observation Schedule) is the autism diagnostic observation schedule, and module four is for high-functioning verbal young adults and adults. Along with the ADI, it allows doctors to look carefully at social and communication skills and behavior. For example, says Nichols, the tests look at such questions as "Can you have a reciprocal social conversation? Are you interested in the examiner's thoughts and feelings? Do you demonstrate insight into relationships? Do you use appropriate non-verbal gestures and facial expressions? Do you have odd or over-focused interests?" The tests allow doctors to attach a grade in each domain to determine whether the patient meets the criteria for autism.
A newer test, the Developmental, Dimensional and Diagnostic Interview-Adult Version (3Di-Adult), is now available and (according to researchers) is simpler and shorter than ADOS, and just as accurate. It measures social communication and interaction, as well as restricted interests and behaviors. 3Di-Adult is slowly becoming a standard tool for evaluating adults.
When the Diagnosis Is Not Autism
It's not unusual, says Nichols, for a patient to come in expecting an autism diagnosis and to leave with a different diagnosis. "Distinguishing between social phobias or shyness and actual impairment with autism can be very tough for a layperson," she says. Other disorders, such as obsessive-compulsive disorder (compulsions, hoarding, needing to do things over and over), social communication disorder
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