Jane, a 21-year old with Asperger’s, had worked as a secretary for her father when he was alive. But when he died and the company closed, she did not seek further work. She carried on living in the family home, which became more and more neglected. Jane enjoyed novels, and was reading Tolstoy's War and Peace when the author met her, but she did not know who to contact to change a broken light fitting or how to change it herself. So she read by candlelight. Her neighbors thought her weird, and the various doctors who saw her found her uncooperative. They believed that she was simply unmotivated to change. Although none of them said it, there was a definite implication that she was lazy and difficult. Jane continues to be dismissed by professionals as having moral failings, but not impairments.
Adolescence and young adulthood are times of identity change and identity confusion. Understandably, teens and young adults do not want to define themselves in terms of impairments, but in terms of aspirations and desires. In telling a person that she has Asperger’s (AS) or High-Functioning Autism (HFA), it is important to make this an accommodating and not a restrictive intervention. There is a balance to be struck between (a) being seen as a person with impairments and (b) being seen as someone with an unobstructed and sunny future. In other words, the AS or HFA individual needs to understand that she will have to work harder in certain areas (e.g., social skills acquisition) than her “typical” peers do, yet with appropriate interventions, she can thrive in most areas just as her peers can.
Who should be responsible for helping older teens and young adults with Asperger’s and High-Functioning Autism?
The first answer to this challenge is “moms and dads.” Parents readily accept this responsibility because they have felt extraordinarily responsible for their AS or HFA youngster from the time that they realized that she was different, and was in some way vulnerable to others' exploitation and influence.
Parents can – and should – be their child’s greatest advocate. The road to becoming your child’s advocate begins by being as informed as possible about AS and HFA. There are dozens of books, some more scholarly than others, that parents can read to help themselves understand that the autism spectrum disorder was not their fault and to learn patterns of behavior they have come to see in their child, but didn’t know what they meant.
The second part about being an advocate for your child is to pay careful attention to him. Learn his idiosyncrasies and pay attention to the things that work for him, along with the things that don’t. For example, if your child has certain obsessions or compulsions, understand what they are and find out ways to get around them, if needed and if possible.
The Teenager or Young Adult Herself—
Another answer is “the AS or HFA individual herself.” It is true that more and more young people on the autism spectrum are discovering alternative methods to empowerment. The Internet has provided many of these, enabling these teenagers to get in touch with each other by email, discussion groups, or through web pages. Even more helpful, the net provides a means of communicating with others that emphasizes technology know-how and de-emphasizes the subtleties of social interaction, both of which are advantages for people with AS and HFA.
Self-advocacy is another way for young people with AS and HFA to help themselves. Self-advocacy teaches these individuals to identify issues that mean the most to them. It helps them prioritize their hopes and dreams – and to make certain that nothing gets in the way of achieving their goals. Autism is nothing to be ashamed of. It’s a part of who they are, but it does not define them. Once they realize this, and that they are capable and intelligent, young people on the spectrum should be able to step up and take on some of the responsibility of self-advocacy.
Self-advocacy is core communication skill. Being proficient at using this skill means that you express yourself effectively and stand up for your point of view, while also respecting the rights and beliefs of others. This skill can help with stress management, boost your self-esteem, and help earn others' respect.
One aspect of being a good self-advocate is to pay careful attention to yourself. Learn your idiosyncrasies and pay attention to the things that work for you, along with the things that don’t work.
Know your strengths. Young people on the spectrum are often gifted with an above average I.Q. It’s likely that you excel in one or more academic subjects. Also, you probably have an intense interest outside of academics (e.g., music or computers). Knowing your own strengths will help you gain much needed self-confidence.
Recognize and accept your weaknesses. Just as with your strengths, you must also be mindful of your weaknesses.
There are clinical psychologists, counselors, educators, employment specialists, neuropsychologists, occupational therapists, psychiatrists and others who have made themselves into specialists. But there is no group that has accepted that AS and HFA is part of their mission. This means that parents and their “special needs” children are constantly the subject of turf wars in which they find themselves being referred back and forth until someone takes responsibility for their care, or until they give up and break contact with services altogether.
AS and HFA are neurobiologic disorders with a strong heritability. Twin studies suggest that genetic and environmental factors often may interact. In addition, outcome is influenced by social and emotional factors. Thus, AS and HFA would appear to be a psychiatrist’s “bread and butter” – disorders that require the combination of knowledge of brain development, environmental factors, and psychology.
Moreover, there is an association between AS/HFA and psychiatric disorder. One recent study showed that 32% of young adults with an autistic spectrum disorder had been diagnosed with another disorder, most commonly depression (56%). Although autism itself does not respond to medication, comorbid conditions do.
A range of medical disorders is reportedly more common in AS and HFA. These include epilepsy, disorders affecting brain development in childhood (e.g., hydrocephalus, tuberous sclerosis, neurofibromatosis), congenital perceptual disorders affecting early social interaction (e.g., congenital disorders of visual acuity and congenital causes of deafness), and disorders affecting motor control (e.g., myotonia and myopathy).
Given all these considerations, there is a strong case for psychiatrists to take responsibility for young people with AS and HFA. And not just any psychiatrists, but the same psychiatrists who deal with “neurodevelopmental disorders” (i.e., disorders that typically manifest early in development often before the youngster enters grade school, and those that are characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning).
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