A Bright Future
A Bright Future
More Accurate Diagnosis
Genes Plus Environment?
Better Medical Treatments
A Future Without Asperger's Syndrome?
Voted Out of Kindergarten
Aspies and Neurotypicals Together
A Wish for the Future
The first children diagnosed with Asperger's syndrome during the 1990s are now teens and young adults. They and the people diagnosed in adulthood continue to contribute to the body of scientific knowledge about AS. Much more needs to be learned, not only about diagnosing and treating AS, but also about how best to help people with AS to live full and meaningful lives. Many research studies are being conducted today so that scientists can gather more information and solve the mysteries of the disorder. The long-term goals of these studies include finding better diagnostic tools, identifying the causes of AS with certainty, and discovering which treatment methods and therapies are most effective. Often, people with AS have another goal for the future: They want to persuade the world to make room for the AS way of being.
Accurate diagnosis of AS is still difficult, and most children do not get a diagnosis until after the age of five. Attwood explains that a diagnosis “cannot yet be made with sufficient confidence in pre-school children.”54 Some children with AS are not diagnosed until they are twelve or older. Researchers and therapists say that this is too late. They point out that the earlier AS is diagnosed, the sooner treatment can start and the sooner social skills can be learned. Perhaps, they say, fewer children would have severe AS symptoms if this could be done. Early diagnosis would also mean that a child would have less chance of becoming depressed, frustrated, or anxious because he or she is different and criticized. It could mean that the child learns to understand and accept being the kind of person he or she was born to be. It might mean that the adults in the child's life no longer treat that child as defective or disturbed.
Diagnosis is difficult, however, because there is still disagreement about the early signs of AS. One long-term study is trying to identify behavior in babies that may indicate an autism spectrum disorder. The study is supported by the National Institute of Mental Health and is being conducted by Sally J. Ozonoff at the University of California at Davis and Marian Sigman of the University of California at Los Angeles. The researchers are following the growth and development of infants who have a brother or sister already diagnosed with an autism spectrum disorder. Because autism runs in families, they expect that a percentage of the babies will develop an autism spectrum disorder themselves. The scientists will keep careful records of the behaviors and development of all the babies. They will compare the early characteristics of those who become autistic with those who do not and look for the traits that might be the diagnostic tools of the future.
Behavior in very young children with autism spectrum disorders, however, can appear perfectly normal, so researchers are also looking for the genes and brain differences that could lead to early, reliable diagnosis. The Autism Genetic Resource Exchange (AGRE) is the world's first “gene bank for autism.”55 Families can enroll in the AGRE program if they have more than one member diagnosed with an autism spectrum disorder. The program takes blood samples from the family members and stores frozen DNA samples in its bank. Parents or other adults are interviewed, videotaped, and audiotaped, and the results are also saved. Children may be videotaped so that their behaviors are on record for further study.
So far, out of about 1,000 families, 345 have had a complete genetic map stored in the AGRE data banks. Any autism researcher can use the AGRE gene data in his or her own study of the genetics of the disorder. The future goal of AGRE is to have thousands of data samples available so that autism researchers can use the large amount of information to identify the genetic and biological markers of autism. Someday, AGRE researchers hope to have a genetic blueprint of autism that can be used to diagnose autism spectrum disorders and perhaps even point the way to a cure.
In England the Autism Research Centre at the University of Cambridge is conducting a gene study of people with AS by comparing their DNA with the DNA of a brother or sister. If the researchers are successful at finding meaningful DNA differences between siblings, they may discover important information about diagnosing and treating AS. In an effort to distinguish between high-functioning autism and AS, scientists at McLean Hospital in
Massachusetts, Yale University, the University of Michigan, and the University of Chicago are collecting DNA samples and brain images of people diagnosed with both disorders. They also will look for differences that may lead to better diagnoses someday.
Many researchers wonder, however, whether genes are the only cause of AS. Some suspect that the genes may set up a vulnerability to AS but that environmental factors actually trigger the disorder, or at least make it more severe. Researchers think one of these factors might be problems with digesting certain foods, which could lead to allergies affecting the normal growth of the brain. Food sensitivities might cause chemical changes in the brain that could be corrected with the right medications.
At the University of Delaware, researchers are conducting surveys of people with AS to look for connections between diet and AS symptoms. The survey consists of questions, usually answered by a parent, about foods. Some of the questions are:
- Does your child have any food allergies?
- Do types of foods seem to affect your child's behavior?
- Does your child have…stomach or gastrointestinal troubles?56
This study is just a beginning in the search for the possible effects of diet on AS. There is very little scientific evidence that foods and allergies can affect autism spectrum disorders, but many people believe there is a connection. Luke, for instance, is on a special program to eliminate gluten (in wheat flour and other grains) and casein (primarily in milk and dairy products) from his diet. He says about his diet, “It has made a massive difference to my life and the lives of many others and if it doesn’t help, then no harm has been done.”57 Luke Jackson believes that he has overcome stomach problems, diarrhea, bad breath, and rashes by eliminating gluten and casein from his diet. He also thinks it has helped his AS symptoms to get better. He sleeps better than he used to, can concentrate better, and is more in control of his emotions.
The diet Luke follows was developed by pharmacist Paul Shattock at the University of Sunderland in Great Britain. His theory is that people with autism spectrum disorders do not use, or metabolize, gluten and casein properly, perhaps because of their genes. These food proteins then cause poisons or toxins to build up in the body that affect the brain in negative ways. The trouble with this theory is that almost no scientific studies have been successful in proving it. Scientists who have tried to test the theory with careful studies have not yet found a connection between autism and diet. Nevertheless, thousands of people claim the diet has helped them or their children. Researchers say that many more studies are necessary in the future to determine if a special diet such as this one can reduce the symptoms of autism spectrum disorders. The University of Delaware survey asks parents about special diets and any results they have noticed. The survey is an initial effort to at least collect reports of the benefits of gluten-free and casein-free diets.
Other researchers are looking for medicines and drugs that may help people with autism spectrum disorders to function more normally. Many people with AS take Ritalin, a drug for overactivity that can help them concentrate and focus on learning. Others may take drugs that treat depression or anxiety. These drugs are common, but in recent years, many children and teens have been prescribed other drugs in the hopes that they will ease some AS symptoms. Risperdal, for example, is an antipsychotic usually prescribed for people with serious mental illness. It is given to young people with AS not because they have a mental illness, but because it sometimes helps them to control frustration and tantrums.
The problem with this kind of drug use, however, is that most of the medicines have not been tested on children and teens. In 2000 the National Institute of Mental Health decided that information on the safety and effectiveness of such drugs had to be determined. It helped to establish the Pediatric Pharmacology Research Units Network at several universities in different cities. The network continues to conduct trials and
studies of drugs commonly given to young people for autism spectrum disorders. In the future the National Institute of Mental Health hopes that clinicians will know if they are making good decisions with prescriptions and will be able to make the best choices for people with AS.
Researchers and clinicians are studying the effects of different kinds of drugs that they hope will ease the symptoms of AS and perhaps make AS brains function more like neurotypical brains. So much research is going on and so much is being learned that many people think a medical cure for autism spectrum disorders is going to be possible. Not everyone, however, is pleased with this idea. Many people with high-functioning autism and AS find the search for a cure to be discriminatory and just plain wrong. Luke, for instance, says, “This is a really controversial subject because lots of people (including me) think that looking for a cure for autism can be likened to Hitler trying to create an Aryan race.”58 Luke's statement may sound extreme, but his point is that people with differences should be appreciated and accepted, not erased from the population. He understands that people with severe autistic symptoms—trapped in a world of their own and unable to communicate—need help and even a cure. But he does not want such a cure for himself. Most people with AS agree with him.
In the spring of 2008, five-year-old Alex Barton was voted out of his kindergarten class by his classmates by a majority of 14 to 2. The vote was Alex's teacher's idea. Prompted by the teacher, the kindergarten children labeled Alex's behavior in class as “disgusting” and “annoying.” The teacher thought Alex was undisciplined and disruptive. She was trying to teach him that actions like crawling under a table and kicking it were bothering the whole class. She told him to listen to what the other children did not like about him. Alex has AS, and his experience is not the kind of future that AS activists want for children like him. They hope that every child with any disorder can enjoy an education that makes room for his or her differences. They want every child to feel special and understood.
Quoted in Asperger Square 8, Not Special: Support Alex Barton, May 24, 2008. http://www.aspergersquare8.blogspot.com/2008/05/not-special-support-alex-barton.html.
Asperger himself wondered if the disorder represents a kind of genius and theorized that autistic people have been responsible for untold creative improvements and inventions throughout history. He said: “It seems that for success in science or art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to rethink a subject with originality so as to create new untrodden ways, with all abilities canalized [channeled and focused] into the
one specialty.”59 More recently, Temple Grandin, who has been responsible for inventions herself, said, “If the world was left to you socialites, we would still be in caves talking to each other.”60 Her point is that logical and unsocial ways of thinking and working have helped civilizations to evolve. Perhaps the world desperately needs people with AS.
Thomas, an eleven-year-old boy with AS, has a creative way of expressing this idea. His mother reports that he was reading a book about AS when he said, “Mom, in this book, they talk about Asperger's disorder. Why do they refer to Asperger's as a disorder?” His mother replied that it was a good question and she did not know. Thomas continued, “I’m going to write the author of this book and tell her she used an incorrect term. Actually, I’m not in disorder. I am definitely in order.”61
Aspies for Freedom (AFF) is an activist group of people with Asperger's syndrome that says that being an “aspie” is a source of pride. The group rejects the idea that being on the autism spectrum is a disease and argues that it is not always a disability. The AFF Web site declares:
We know that autism is not a disease, and we oppose any attempts to “cure” someone of an autism spectrum condition, or any attempts to make them “normal” against their will. We are part of building the autism culture. We aim to strengthen autism rights, oppose all forms of discrimination against aspies and auties [autistics], and work to bring the community together.62
This may seem like a surprising statement, but AFF members have very different goals for the future than most researchers and clinicians do. They oppose many current treatments. They do not want society's pity and do not want to be cured. Their goal is to see a change in the way people with AS are treated by society and to be supported in their efforts to fit into the neurotypical world. They say, “Many problems associated with autism are caused, or worsened, by prejudice.” They want to persuade society to have a “positive and realistic
idea”63 of what it means to be on the autism spectrum. They believe, for example, that schools that insist that people with AS should adjust to noisy environments are prejudiced. They believe that people should be able to be employed whether or not they like to socialize with neurotypicals in the workplace. They say demanding “normal” social skills is prejudice. Activist groups such as Aspies for Freedom believe that the best and happiest future will be one in which people with AS are not expected to act like neurotypical people and are valued for their creative ways of thinking.
GRASP, another AS support group, believes the best future is one in which people with autism spectrum disorders help each other to succeed in the neurotypical world. GRASP stands for the Global and Regional Asperger Syndrome Partnership. It is an advocacy group, run by people with AS and autism, that provides educational and support services for all people on the autism spectrum. The GRASP mission includes recognizing that members have a responsibility to themselves and to society as a whole, increasing public awareness about autism spectrum disorders, teaching themselves how to get along in their communities, and improving the lives of people with AS and autism. It also aims to describe the positive aspects of AS, as well as its negatives. Positive characteristics of AS, according to GRASP, include honesty, lack of hypocrisy, loyalty, trusting personality, passion about a topic or interest area, orderliness, excellent memory, independent thinking, and great powers of concentration.
One of the ways that GRASP wants to make a difference is to change the terms used to describe AS people. The changes will help raise self-esteem and pride for people with AS. They will also help neurotypical people to abandon their prejudices against those on the autism spectrum. The GRASP Web site urges that “normal versus abnormal” is a negative wording for neurological differences. It states that the appropriate term is not normal but neurotypical. It says that disorder is a prejudicial term, while condition or diagnosis is a better one. It labels disease a bad term and syndrome a good term. It asserts that cure is a wrong term that should be replaced with understand.64
Michael John Carley, the founder and executive director of GRASP, is a man with AS who also has a son with the syndrome. He believes that learning to get along in the neurotypical world, or conforming, has its place. He says that people can assimilate, or act as neurotypical as possible, if they wish. But he also believes that AS people should be allowed not to conform and not to assimilate. He explains, “GRASP fights very hard for people's right not to have to conform, for such pressure can often be society's attempts to subconsciously demonize or denounce so-called
Dawn Prince-Hughes is a doctor of anthropology and an expert on gorilla behavior. She also has AS, but she was not diagnosed until adulthood. Her childhood and youth were painfully difficult as she struggled with people who did not accept her nor offer any ways to help her cope. She knows she has achieved success now, but she does not want other children to suffer the experiences she did. She explains:
I will always grieve for the small child and the young woman running away from the light, the noise, the taunts, the fists, my racing mind. Those scars don’t heal and I don’t want them to. I have been carved like a stone and that's what it has taken. I hold a hope, sweetly, that other children can become all they can be—something different than what I am now—by having a kinder experience.
Quoted in Random House of Canada, “Author Interview.”www.randomhouse.ca/catalog/display.pperl?isbn=9781400082155&view=auqa.
Anthropology professor Dawn Prince-Hughes's memoir, Songs of the Gorilla Nation: My Journey Through Autism, traces her experience living with Asperger's syndrome.
autistic behaviors. But so too should no one criticize the choice of someone on the spectrum to advance in the world through assimilation.…We must instead respect each other's choices.”65
Today's adults with AS grew up undiagnosed and misunderstood. Their adjustment to the neurotypical world was fraught with pain and difficulty. The members of GRASP want to see a different kind of future for today's AS children and teens. Carley believes that they will achieve bright futures by becoming self-aware and being comfortable with who they are. He says, “[We] want to be creating in kids the best self-advocates they possibly can be because we hope that they’re going to leave home, and they need to be the ones to explain why they come across as different to that potential landlord, significant other, or employer.”66 At the same time, say O.A.S.I.S. leaders, “Everyone with Asperger syndrome should be respected and celebrated for their differences.”67