Why "High Functioning" Autism Is So Challenging

 At this point in history, there is disagreement about how many people on the autism spectrum are on the high or low end of the spectrum (or whether most people with autism are "somewhere in the middle"). It is clear, however, that the lion's share of media attention goes to folks at the high and the low ends of the spectrum—that is, the profoundly disabled and the very high functioning.

The fact is that life with severe autism is extraordinarily difficult. Logic would suggest that people on the high end of the spectrum have it easy—as do their families and teachers. After all, people with high functioning autism are often very bright and may have impressive talents. But the reality is quite different.

If the media is to believed, the high end of the autism spectrum is peopled largely by eccentric geniuses—Bill Gates and Albert Einstein are often mentioned, along with Dan Aykroyd and Daryl Hannah—who by and large do very well indeed, though they march to the beat of their own drummer. The reality, however, is that "high functioning autistic" and "genius," "business tycoon," and "Hollywood star" rarely go together. In fact:

• People with high functioning autism, while they may or may not be unusually intelligent, rarely have the kind of intense motivation for public success that sends a Bill Gates to find funders or an Einstein to find a publisher.
• They may also have significant challenges which stand in the way of living a comfortable life, succeeding in work or romance, or achieving a sense of self-worth. Those issues are made more challenging, in part, because they surprise and upset others who don't anticipate odd behaviors or reactions from people who "pass for normal" in many situations.
• While people with more severe autism are not generally expected to just suck it up and get through difficult moments, people on the higher end of the spectrum are expected to do just that.

Here are just a few of the issues that get between people on the high end of the autism spectrum (including those diagnosed with the now-outdated Asperger syndrome) and personal success and happiness:

1. Extreme sensory issues. People at the higher end of the spectrum are just as susceptible as people in the middle or lower end of the spectrum to sensory dysfunctions. These include mild, moderate, or extreme sensitivity to noise, crowds, bright lights, strong tastes, smells, and touch. This means that a person who is bright, verbal, and capable may be unable to walk into a crowded restaurant, attend a movie, or cope with the sensory assaults associated with malls, stadiums, or other venues.
2. Social "cluelessness." What's the difference between a civil greeting and a signal of romantic interest? How loud is too loud? When is okay to talk about your personal issues or interests? When is it important to stop doing what you enjoy in order to attend to another person's needs? These are tough questions for anyone, but for a person on the high end of the autism spectrum they can become overwhelming obstacles to social connections, employment, and romance.
3. Anxiety and depression. Anxiety, depression, and other mood disorders are more common among people with high functioning autism than they are among the general population. We don't know whether the autism causes the mood disorders, or whether the disorders are the result of social rejection and frustration—but whatever their causes, mood disorders can be disabling in themselves.
4. Lack of executive planning skills. Executive functioning describes the skills we use to organize and plan our lives. They allow typical adults to plan schedules in advance, notice that the shampoo is running low, or create and follow a timeline in order to complete a long-term project. Most people with high functioning autism have compromised executive functioning skills, making it very tough to plan and manage a household, cope with minor schedule changes at school or at work, and so forth.
5. Emotional dysregulation. Contrary to popular opinion, people with autism have plenty of emotions. In fact, people with autism can become far too emotional in the wrong situations. Imagine a 16-year-old bursting into tears because of a change in plans, or a grown woman melting down completely because her car won't start. These are the types of issues that can arise for people with high functioning autism, who are capable of doing a great many things ONLY when the situation is predictable, and no obstacles arise.
6. Difficulty with transitions and change. Lots of people have a hard time with change, but people with high functioning autism take the issue to a whole new level. Once a pattern is established and comfortable, people with autism (by and large) want to maintain that pattern forever. If a group of friends goes out on Wednesdays for nachos, the idea of going out on Thursdays for chicken wings can throw an autistic adult into a state of anxiety or even anger.
7. Difficulty with following verbal communication. A person with high functioning autism may be more than capable of doing a task—but unable to follow the spoken instructions provided. In other words, if a policeman says "stay in your car and give me your license and registration," the person with autism may process only "stay in your car," or only "give me your license." The same goes for instructions given, say, at a ballroom dance class, at the doctor's office, or by a manager in an office setting. As you can imagine, this can cause any number of issues, ranging from serious problems with the police to inadvertent mistakes at work.

As you can see, the term "high functioning" does mean what it says. But high functioning autism is not an easy or simple diagnosis to live with. For those caring for, employing, teaching, or working with people on the higher end of the spectrum, it's important to remember that autism is autism.