At this point in history, there is disagreement about the number of people on the autism spectrum who are at the top or bottom 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 people at the high and low ends of the spectrum, that is, people with severe disabilities and very high functioning.
The fact is that living with severe autism is extremely difficult. Logic would suggest that high-end people have ease, as do their families and teachers. After all, people with high functional autism are often very bright and can have impressive talents. But the reality is very different.
Myth: People with high functional autism are unusually intelligent and successful
According to the media, the high end of the autism spectrum is largely populated by eccentric geniuses - Bill Gates and Albert Einstein are often mentioned, as well as Dan Aykroyd and Daryl Hannah - who, overall, do very well, even if they work. to the beat of their own drummer. The reality, however, is that "high-level autism" and "genius", "business tycoon" and "Hollywood star" rarely go hand in hand. In reality:
- People with high functional autism, although 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 can also have significant challenges that prevent them from living comfortable lives, succeeding in work or romance, or gaining self-esteem. These problems are made more difficult, in part, because they surprise and bother those who do not anticipate strange behaviors or reactions from people who "pass for normal" in many situations.
- While people with more severe autism are not usually expected to suck on it and go through hard times, people at the higher end of the spectrum should.
Fact: high functional autism is very difficult every day
Here are some of the issues that arise between high-end people on the autism spectrum (including those diagnosed with the now obsolete Asperger's) and personal success and happiness:
- Extreme sensory problems. People at the upper end of the spectrum are just as susceptible as people in the middle or lower end of the spectrum to sensory dysfunction. These include mild, moderate or extreme sensitivity to noise, crowds, bright lights, strong tastes, odors and touch. This means that a bright, verbal, and capable person may not be able to enter a crowded restaurant, watch a movie, or deal with sensory assaults associated with shopping malls, stadiums, or the like. places.
- Social "Cluelessness". What is the difference between a civil greeting and a signal of romantic interest? How strong is too strong? When can you talk about your personal problems or interests? When is it important to stop doing what you love to meet the needs of another person? These are tough questions for everyone, but for someone at the high end of the autism spectrum, they can become overwhelming barriers to social relationships, jobs and romance.
- Anxiety and depression. Anxiety, depression and other mood disorders are more common in people with high functional autism than in the general population. We don't know if autism causes mood disorders, or if the disorder is the result of social rejection and frustration - but whatever the cause, mood disorders can be debilitating. themselves.
- 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, to notice that the shampoo is weak, or to create and follow a schedule in order to carry out a long-term project. Most people with high functional autism have compromised their executive functioning skills, making it very difficult to plan and manage a household, manage minor schedule changes at school or at work, etc.
- Emotional deregulation. Contrary to popular opinion, people with autism have a lot of emotions. In fact, people with autism can become far too emotional in bad situations. Imagine a 16-year-old girl who bursts into tears because of a change of plan, or an adult woman who completely melts because her car does not start. These are the types of problems that can arise for people with high-level autism, who are able to do many things ONLY when the situation is predictable and there are no obstacles.
- Difficulty with transitions and change. Many people find it difficult to change, but people with high functional autism take the problem to a whole new level. Once a model is established and comfortable, people with autism (overall) want to maintain that model forever. If a group of friends goes out on Wednesday for nachos, the idea of going out on Thursday for chicken wings can put an autistic adult in a state of anxiety or even anger.
- Difficulty following verbal communication. A person with high functional autism may be more than able to do a task, but unable to follow the spoken instructions provided. In other words, if a police officer says "stay in your car and give me your license and your registration", the autistic person can only deal with "stay in your car" or only "give me your license". The same goes for instructions given, for example, in a ballroom dance class, at the doctor's office or by a manager in an office. As you can imagine, this can lead to a number of problems, ranging from serious problems with the police to unintentional mistakes at work
As you can see, the term "high functioning" means what it says. But high-level autism is not an easy or simple diagnosis to live with. For those who care for, employ, teach or work with people at the top of the spectrum, it is important to remember that autism is autism.