: LIVING WITH DIFFERENCE Introduction

Autism is a word that strikes fear in the The evidence is also piling up that

hearts of parents everywhere. In its most a large number of the most severely Download the mp3 of this Introduction severe forms, autism leaves children affected individuals are also living at newsinreview. without basic social skills, without verbal interesting and rewarding lives. Many of cbclearning.ca. communication, with limited interests in those incapable of speech have learned their external environment. People with to communicate with “normal” people by Focus the most severe forms of autism seem using a computer. They have been able to trapped in their own bodies, forced to share with others a world of fascinating, Disorders (ASD) are repeat the same simple behaviours over altered perceptions, a world in which on the rise in Canada and over. every one of their senses is heightened. and around the world. Autism was considered relatively rare Often they describe themselves as using This News in Review until fairly recently. In the 1980s, autism a natural language based on visual, rather module looks at ASD from a number of was diagnosed only once in every 10 000 than verbal, thought and communication. perspectives. One children. Today it is believed that at least Seemingly withdrawn from the outside of these is that of one Canadian child out of 165 has some world, they actually relate to it in unusual the researchers and form of autism. And autism has a gender but meaningful ways. parents who see it as bias: four times as many boys as girls are Many of those with ASD are now a condition in search diagnosed with the disorder. suggesting that it is time to rethink of a cure. But we also In recent years, autism researchers the way society treats those with the hear from autistic people themselves have made many advances in studying disorder. They argue that society should who think of ASD this disorder—which was first identified make less of an effort to find a “cure” for as more of a human in 1942. The condition is now referred autism and should devote more time and difference than a to as Autism Spectrum Disorders, or energy to assisting those who live with disorder. ASD. This recognizes that autism is not ASD. Rather than thinking of them as one but an entire range of disorders, people who are sick, we should think of with characteristics ranging from mild to them as people who are different: autistic severe. Those with the least severe forms people, rather than people with autism. usually require little or no assistance Whether or not society is willing in coping with day-to-day living. To to make that adjustment remains most of the people they meet or with questionable. But each of us can make an whom they work they appear completely effort to appreciate the strengths as well “normal.” as the challenges of autistic people.

To Consider 1. In a discussion of ASD, School Library Journal (August 2009) points out that the rate of Autism Spectrum Disorders is now likely as high as one child out of every 150. This means ASD is “more common than pediatric cancer, diabetes, and AIDS combined.” Does this high rate of ASD diagnosis indicate that we as a society should be spending more money, time, and resources in investigating ASD? And, if we change the way we view ASD—as a difference, rather than a disorder—is this likely to affect the number of resources we invest in trying to understand ASD?

2. Describe any personal knowledge or experience you have of autistic people.

CBC News in Review • October 2009 • Page 47 AUTISM: LIVING WITH DIFFERENCE Video Review Pre-viewing Activity During the video you will meet a number of autistic people. At least one would be described as severely autistic; others as highly functional. Before watching the video, jot down three behaviours that you would expect an autistic person to demonstrate. After viewing, revisit this list to determine if your expectations were met. Discuss what you learned from this exercise.

Comprehension Questions While viewing, answer the following questions in the spaces provided. (It may be helpful to pause the video from time to time to enable a full response.)

1. What is the traditional approach to autism treatment?

2. How does Amanda Baggs say autistic people are treated until they “learn more standard ways of communicating”?

3. What does Michelle Dawson say is the “very common” way of looking at autism?

4. Whom does Ari Ne’eman feel is being left out of discussions about autism?

5. How does Ari Ne’eman define the problem faced by autistic people?

6. Amanda Baggs says there is a “main time” she would like to be non- autistic. What is it?

7. What does Michelle Dawson say that society believes is the only way for autistic people to have a good life?

CBC News in Review • October 2009 • Page 48 Post-viewing Activities 1. In 10 words or less, what would you say was the theme of this video presentation? Does each of the participants reinforce this theme? Explain.

2. The video presents the opinions of four individuals: three of them autistic, one the mother of an autistic child. During a second viewing of the video, use the chart below to jot down the main points each individual makes about: (a) Their own condition as autistic people and (b) how they would like society to treat them.

Are they in agreement? Do their views complement one another?

Individual Main Points Amanda Baggs

Michelle Dawson

Ari Ne’eman

Esteé Klar-Wolfond (mother of Adam)

3. Amanda Baggs has several videos on YouTube, but the one for which she is best known is called “In My Language” (www.youtube.com/ watch?v=JnylM1hI2jc). It is in two parts. The first lacks any verbal language; the second explains what she was attempting in the first part.

The video deserves two viewings. After the first viewing, with Baggs’s explanation in mind, watch the first part for a second time.

Does your understanding of Baggs’s methodology and intent change the way in which you interpret the video? In what ways does it do so?

4. What, if any, impact has this story made on your views of autism?

CBC News in Review • October 2009 • Page 49 AUTISM: LIVING WITH DIFFERENCE The Autism Spectrum

Upon hearing the word autism many second most common form of ASD, it Further Research of us think of individuals who share a affects 15 of every 10 000 Canadians. A very useful introduction to Autism condition in which they demonstrate Those with PDD-NOS demonstrate Spectrum Disorders several unusual behavioural many but not all of the same is available from the characteristics. Professionals, however, characteristics as people diagnosed Autism Society Canada prefer to talk about Autism Spectrum with AD. Web site at www. Disorders, or ASD. Using the term ASD • Asperger Disorder (AS): Also called autismsocietycanada. recognizes that there are several different ca/pdf_word/info_ASC Asperger’s Syndrome, AS affects five ’swhatisautisminfoshe disorders, ranging from mild to severe, in every 10 000 Canadians. Because et_27_June_07_e.pdf. that demonstrate at least some of the those with AS usually develop normal Students seeking more characteristics we call “autistic.” language and learning skills in early detailed information childhood, AS is often not diagnosed on the varieties of Classifying ASD until children have begun formal ASD will find this site The various forms of ASD are (www.autismsociety schooling. It is then that problems with classified by researchers as Pervasive canada.ca) an social interaction become apparent. excellent place to Development Disorders (PDDs). The begin their research. term is used to describe conditions Common Characteristics of the Other sources include that result in the delayed development Autism Spectrum the Autism Canada (or non-development) of basic human It is important to be aware that there are Foundation at www. behaviours. Many of these involve many common characteristics among autismcanada.org and communication and socialization—in Autism Treatment people with autism. But not every other words, how we interact with our Services of Canada at person will have all of them, and the fellow human beings. www.autism.ca. characteristics vary greatly in severity The Autism Society Canada identifies from person to person. However, people five differences among those diagnosed with ASD do develop differently from with ASD that make up the autism the majority of the population in four spectrum (www.autismsocietycanada. main areas: motor, language, social, and ca/understanding_autism/what_are_asds/ cognitive (perceiving and reasoning) index_e.html). These are: skills. This lack of development is often • Number and kind of symptoms demonstrated by unusual behaviours. • Severity: mild to severe Without early diagnosis and • Age of onset intervention, some people (about 40 per • Levels of functioning cent) of people with ASD never learn • Challenges with social interactions to speak. Many develop their language There are actually five different PDDs skills far more slowly than the rest of that make up the autism spectrum, but the population. Most are rarely able two of them are extremely rare. The to understand the forms of non-verbal three that most people are referring to communication—smiling and frowning, when the use the term ASD are: for example—that the rest of us use daily • Autistic Disorder (AD): This is the in our communications with others. most common form of ASD, affecting People with ASD usually have real about 20 in every 10 000 Canadians. difficulties in social relationships. Some • Pervasive Development Disorder Not have no interest in other people. Others Otherwise Specified (PDD-NOS): The show no understanding of how to relate

CBC News in Review • October 2009 • Page 50 to others and are unable to carry on a ability to focus much more attentively simple conversation. They often have on tasks or problems than the average difficulty making eye contact. person. They are often very good at Those with ASD often demonstrate paying attention to details. Many have strange behaviours. They may repeat excellent memory skills. the same gestures or body movements over and over. They often are obsessive A Neurological Disorder in their interests and become fixated on The cause or causes of ASD and its one activity or one idea. It is this aspect component conditions are still unclear. of ASD that usually draws most people’s It was only in 1942 that the disorder attention to those with ASD. was first recognized. It is generally Some people with ASD respond to considered to be a neurological disorder, sensations in ways very different from a disorder of the nervous system. the general population. They may have Modern research is concentrating difficulty processing both what they on several different areas looking for see and what they hear. In some cases, a cause. These range from genetic they can be either over-sensitive or abnormalities to environmental factors; under-sensitive to many stimuli. Many from fetal brain development to immune people with ASD report that their over- system deficiencies. To date, the sensitivity to sensations causes them greatest amount of research has focused intense fear. This sensitivity has been on genetic causes. Most researchers, described as having the volume on one however, now believe that ASD is the or all their senses turned up as high as it result of both genetic and environmental will go. factors. What they still don’t know is Some people with ASD also have which factors are involved and how they unusual abilities. These may include an work together. Quick Research Activity The two Autism Spectrum Disorders not discussed in this guide are Childhood Disintegrative Disorder (CDD) and Rett’s Disorder (RD). Using the resources recommended in the sidebar on the previous page, prepare a brief written description of one of these disorders. Include symptoms, a discussion of who is affected, and any recommended treatments.

CBC News in Review • October 2009 • Page 51 AUTISM: LIVING WITH DIFFERENCE Traditional Treatment

It may seem a bit odd to speak of are very intensive. Children usually Further Research “traditional treatment” when discussing a work 20 to 40 hours each week with a A detailed discussion of current treatment condition that was identified less than 70 professional therapist or someone else methods is available years ago. During that period, however, trained in the methodology (this might be from Autism Society a number of different approaches have a parent or teacher). Canada at www. been developed to help treat Autism ABA is used in a very specific and autismsocietycanada. Spectrum Disorders (ASD). While sequential fashion: “ABA identifies a ca/approaches_to_ autism societies are reluctant to endorse person’s individual communication, treatment/overview/ index_e.html. See specific treatment methods, they do behavioural, learning, and social also Autism Central at endorse the value of “scientifically strengths and challenges in a variety www.autismcentral. validated effective treatment.” Here of situations. The person’s abilities are ca/research/index. is the treatment statement of Autism then used to acquire new skills, as well php?option=com_cont Society Canada: “ASC believes that as to improve and retain others. Using ent&task=view&id=62 early scientifically validated effective a process called ‘discrete trials,’ each &Itemid=86. treatment can lead to great improvement skill is broken down into manageable for many children with autism. Without steps. Each step is taught using positive appropriate individualized treatment and reinforcement and then chained with services many people with autism will the other steps until an entire skill is not develop effective communication learned” (www.autismsocietycanada. and social skills and will continue ca/approaches_to_treatment/behaviour_ to experience serious behaviour treatment/index_e.html). and learning difficulties” www.( Once a particular skill is learned by the autismsocietycanada.ca/pdf_word/info_ child, he or she is given the opportunity ASC’swhatisautisminfosheet_27_June_ to apply that skill in a number of 07_e.pdf). different and more complex situations. ABA is a program that can be used at Applied Behavioural Analysis home, in schools, or elsewhere in the (ABA) community. It is often incorporated by Applied Behavioural Analysis is the teachers and support staff into regular basis of the traditional treatment for school routines. ASDs. Studies have shown remarkable developmental improvement in many Intensive Behavioural children diagnosed with Autistic Intervention (IBI) Disorder who were treated with ABA, In Canada, in discussions of ASD provided that they were identified before and children, one often hears the term age three and they received at least two Intensive Behavioural Intervention years of ABA treatment before beginning (IBI). IBI is a form of ABA that applies formal schooling. ABA principles and methods in a About half these children were able to highly intense setting for a minimum begin regular schooling with little or no of 25 hours per week. It is designed outside support. specifically to prepare children for While most effective with younger regular school. Like other intensive children, the programs have also proven behaviour-based intervention programs, helpful with older ones. The programs IBI programs concentrate on five

CBC News in Review • October 2009 • Page 52 specific behavioural areas (www. University in Hamilton, Ontario, have Quote autismsocietycanada.ca/approaches_to_ developed a test that tracks children’s “Researchers say it is possible to recognize treatment/range_interventions/index_ eye motion as they look at eyes and the signs of autism in e.html): faces—a measure of social development babies before the age • Attention to social stimuli in children as young as six months. By of two. Here are some • Imitation skills nine months, babies whose eyes failed common signs: • Language use and comprehension to focus on eyes and faces were found • No ‘baby talk’ or • Appropriate play likely to be later diagnosed with ASD. babbling by 11 months • Social interaction skills Children diagnosed with ASD need to begin their treatment as young as • Lack of simple gestures, such Diagnosing ASD possible. These treatments, because they as waving, by 12 It seems fairly clear that the earlier are intensive and require professional months the intervention, the more likely that leadership, are extremely expensive. • No response to behaviour intervention will help autistic Currently, the costs range anywhere sounds; inability to children to live normal lives. from $30 000 to $80 000 per child per say single words by Recent research is making it possible year. Often the full costs are not assumed 16 months to diagnose children with ASD at by government medical plans. In some • Limited imaginative younger and younger stages. For jurisdictions the costs are only assumed play example, researchers at McMaster for a limited period. • Selective interest in food” — “What For Discussion to watch for” (The Given the range of disorders in the autism spectrum, should governments be Globe and Mail, April assuming the costs of any and all treatments? Should public medical providers 2, 2008) use a blanket funding formula or approach each case separately? Offer carefully supported responses.

CBC News in Review • October 2009 • Page 53 AUTISM: LIVING WITH DIFFERENCE Rethinking Autism

Do Autism Spectrum Disorders always and believe that certain environmental Did you know . . . require treatment? Do autistic individuals factors—yet unidentified —are also More on Simon Baron-Cohen is require intervention and “repair,” or are associated with the severity of the available at www. they only different from what society has condition. autismresearchcentre. decreed is normal? Baron-Cohen has also proposed com/arc/staff_member. Autism Society Canada, which a theory that the autistic brain is an asp?id=33. And yes, endorses early behavioural intervention, extreme version of the normal male actor Sacha Baron acknowledges that not all people with brain. He points out that autistic people Cohen is his first cousin. Note that the ASD require treatment: “The term tend to be better at things that men do latter spells his name autism is frequently used as a catch-all well (such as systematizing) and worse without the hyphen. term for a wide variety of symptoms, at things that women do well (such disabilities, and special abilities. There as empathizing). He also notes that are people with Asperger’s Syndrome, four times as many boys as girls are ‘high functioning’ autism and PDD- diagnosed as autistic. He is currently NOS who may enjoy a very high doing advanced research in an attempt to level of functioning and who may test this theory. need little or no special treatment or Baron-Cohen does not argue in educational programming” (www. favour of eradicating autism. He autismsocietycanada.ca/pdf_word/info_ believes that some of the genes that ASC’swhatisautisminfosheet_27_June_ make people good at jobs like math, 07_e.pdf). physics and engineering—systematizing occupations—may also be some of the Simon Baron-Cohen ones that contribute to ASD. Eradicating One of the leaders in ASD research is autism, he suggests, would likely mean Simon Baron-Cohen. When he began his also weakening the gene pool. He also research work, autism was often viewed points out that many higher-functioning as a simple case of either you were autistic people, like those with Asperger autistic or you weren’t. It was Baron- Disorder (AS), have no desire to be Cohen who, in the 1990s, introduced “cured.” the idea of the autism spectrum. He sees everyone as at least a bit autistic, falling Ari Ne’eman somewhere on a scale between mild and In 2006, the year after he graduated severe. Baron-Cohen’s Autism Research from high school, Ari Ne’eman founded Centre at Cambridge University has the non-profit Autistic Self-Advocacy developed an Autism Spectrum Quotient Network in the U.S. Ne’eman has AS questionnaire; almost everyone would and was diagnosed as high-functional in answer at least some of its questions childhood. He sees ASD as a disability, positively. but also as a different way of being— Baron-Cohen and his colleagues are what he calls a “neurodiversity”—and also leaders in promoting the theory wants society to accept this definition that genetics is a major cause of ASD. (Newsweek, May 25, 2009). Rather than They have, to date, identified nine treat autism as some sort of “medical genes as being associated with ASD. mystery,” society should provide Most researchers now accept this link autistic people across the spectrum with

CBC News in Review • October 2009 • Page 54 support—in the classroom, workplace, things over and over). Grandin went on Further Research and for . to university, ultimately obtaining a PhD The Autistic Self- Advocacy Network’s Ne’eman is critical of many of the in animal science from the University of Web site is at www. mainstream autism organizations in the Illinois. autisticadvocacy. U.S. He is especially critical of Autism Grandin has become an advocate org. ’ Speaks, the largest of the advocacy for early intervention to treat autism; website is at www. groups in the country. He accuses them she believes that the fixations of autismspeaks.org. of spending most of their resources on autistic children can be redirected research to discover the causes of autism. in productive directions. Like many Further Research He feels they should instead devote their autistic individuals, she calls what ’s efforts to improving the quality of life most of us think of as language (verbal Web site is at www. for all autistic people. communication) her “second language.” templegrandin.com. She describes herself as a visual thinker. Temple Grandin Grandin has become a world leader Since 1986, when she published her first in the design of humane equipment for book, Dr. Temple Grandin has been the handling livestock. She notes that her most prominent example of what autistic own fears and sensitivities have made people can accomplish. In 1950 she was her more aware of how animals also can diagnosed as autistic, and her parents feel fearful and threatened. were told she should be institutionalized. Grandin acknowledges that emotional Despite the diagnosis, Grandin found relationships with other people play no support from both her schools and her part in her life. She also has said that parents. She began talking at four, and her autism affects every part of her life. speech therapy led to further progress. Nevertheless, if a “cure” were available She was teased and picked on in middle she would refuse it. Like Ari Ne’eman, and high school (other students called she would not support a cure for the her “tape recorder” because she repeated entire autism spectrum.

To Consider Many people who were born deaf make a similar argument to the one some autistic people make: their deafness makes them different, not in need of a “cure.” They are content not to hear and are readily able to communicate without verbal language.

1. Does this attitude offer any indications on how society should approach those with ASD?

2. Are there other aspects to ASD that make it difficult to compare with deafness?

3. What is your personal view?

CBC News in Review • October 2009 • Page 55 AUTISM: LIVING WITH DIFFERENCE Intolerance for Difference

A major problem faced by almost question “Why does stigma surround Quote everyone with Autism Spectrum mental illness?” and answers it as “The effects of an ASD on a person’s life vary Disorders is social intolerance. follows (www.mentalhealthworks.ca/ for each individual It is an unfortunate truth that people who facts/sheets/stigma.asp): on the spectrum. For are different in some way from what is “We all have an idea of what someone some people with considered normal are often singled out. with a mental illness is like, but most ASDs who are ‘high Sometimes we fear them; other times of our views and interpretations have functioning,’ societal they can become objects of misplaced been distorted through strongly held reactions to social ‘differences’ may be humour or ridicule. social beliefs. The media, as a reflection more disabling than Many autistic people and their of society, [have] done much to sustain any actual ‘symptoms’ parents can tell stories of how others a distorted view of mental illness. or problems caused have reacted negatively to their Television or movie characters who are by ASD.” — Autism behaviour, either through ignorance or aggressive, dangerous, and unpredictable Society Web site, maliciousness. Parents encounter adults can have their behaviour attributed to “Approaches to who accuse them of poor parenting a mental illness. Mental illness also Treatment & Education: because their autistic child, frustrated has not received the sensitive media Overview” (www. autismsocietycanada. in an attempt to communicate, has a coverage that other illnesses have been ca/approaches_to_ public tantrum. Children are often teased given. We are surrounded by stereotypes, treatment/overview/ mercilessly by their peers because of popular movies talk about killers index_e.html) their obsessive behaviours. who are ‘psychos,’ and news [covers] Sometimes negative reactions are mental illness only when it relates to the result of misunderstanding. A violence. We also often hear the casual Newfoundland teenager recently spent use of terms like lunatic or crazy, a night in jail because he encountered along with jokes about the mentally police officers who mistook his autistic ill. These representations and the use behaviour for public drunkenness. of discriminatory language distort the public’s view and reinforce inaccuracies The “Mental Illness” Label Factor about mental illness.” Complicating matters is the fact that Being stigmatized because of mental autism is considered a mental disorder, illness can have a number of effects and mental illness remains poorly on an individual. Most significant understood and feared by society. Yet is rejection or exclusion by one’s one in five Canadians will experience community, because of fear, discomfort, some form of mental illness in his or her or mistrust. The damage to self-esteem is lifetime. And mental illness can affect considerable. people of all ages, levels of education, or social and economic status. Fighting Labelling For most people, mental illness is As we saw in the “Rethinking Autism,” considered to be a stigma—a mark section on page 54 some autistic people of disgrace or shame. Those who are would like to see ASD considered a mentally ill are stigmatized and valued “neurodiversity”—a different way of negatively as individuals by society. being—rather than a mental illness. The Ontario branch of the Canadian Currently, Autism Spectrum Disorders Mental Health Association asks the are listed among hundreds of other

CBC News in Review • October 2009 • Page 56 disorders in the Diagnostic and was listed as a category of disorder in Statistical Manual of Mental Disorder the manual. A series of well-organized (DSM), published by the American protests at APA conventions, combined Psychiatric Association (APA). First with the publication of new research published in 1952 and frequently revised, data, led the association to drop this is the “bible” of mental illnesses homosexuality as a listing in the DSM. It for most North Americans who work in was replaced with a new category, now psychiatry and psychology. Many autistic called gender identity disorder (GID). people would like to see at least some of GID is used to describe people who have the Autistic Spectrum Disorders removed true discontent with the gender with from the DSM. which they were born. Some groups have already had success While gays and lesbians continue to in having “disorders” removed from the face a certain amount of social stigma, DSM. The gay and lesbian community is that stigma no longer includes the stigma one of these. Until 1974, homosexuality of having a certified mental illness. Inquiry 1. Would removing at least some Autistic Spectrum Disorders from the DSM lessen negative public perceptions of ASD? Why?

2. Is the removal of homosexuality from the DSM a good predictor of what would happen if ASD were also removed? Why or why not?

CBC News in Review • October 2009 • Page 57 AUTISM: LIVING WITH DIFFERENCE Activity: Drafting a School Policy

Most schools or school boards have written policies that deal with and promote the of students with special needs. Your task is to create or amend such a policy for your school in order to assist students with Autism Spectrum Disorders (ASD).

If your school or board of education has a written policy for dealing with students with special needs, you will want to begin by reviewing it (it should be easy for your teacher to obtain copies for the class). It will also be helpful if you review the information provided in “The Autism Spectrum” on page 50 of this guide.

Your objective should be to produce a policy that integrates those students with ASD—or other neurological disorders—into the regular school system to the fullest extent possible.

In small groups (no larger than four students), begin by reviewing and assessing the existing policy. Does it meet the needs of autistic persons as described in the video and viewing guide? Why or why not? Are there changes or additions that need to be made? Be specific in your suggestions.

As you draw up a new policy, you will need to consider a variety of questions: • Are there physical modifications that need to be made to school facilities? • Are special seating arrangements required if ASD students are accompanied by an assistant or therapist? Should these assistants be welcome in every classroom? • Will additional training and support be required for teachers with ASD students in their regular classrooms? • Will a public awareness campaign be required to ensure the successful integration of ASD students into regular classrooms? Should this campaign be aimed at students alone, or must parents and the community be included? • Are new policies required to ensure that ASD students are not subjected to teasing or bullying by their peers? • Are there general school rules or regulations that will need to be modified for ASD students? • Will these changes require additional funding? In your discussion, you may well think of other questions and situations that your policy needs to address.

Once you have put together a written policy, choose one member of your group to present it to the entire class. Following the presentations, it will be useful to determine the common elements and put together a single policy summing up the class’s work. You may wish to share your findings with your school administration or school board.

CBC News in Review • October 2009 • Page 58