said to have achieved "unprecedented results". The first school (Higashi School) to use this method was opened in Tokyo in 1964, and a school following the same principles was opened in Boston in 1987 (USA Higashi). Picture Exchange Communication System (PECS) a functional communication training approach that emphasizes teaching students to give a picture of something they desire to another person in exchange for that item. Pioneered by Andrew Bondy and Lori Frost of the Delaware Autistic Program. Considered a kind of augmentative communication. Meyer-Johnson pictures A set of pictures used for communication often used for augmentative communication. Milieu Training method of teaching language and social skills to children with disabilities. _________________________________________________________________ _________________________________________________________________ Autism FAQ - Advocacy _________________________________________________________________ There are a number of issues on which a number of autistic people and parents of autistic people take an active role. Naturally, there are those who feel strongly about a particular hypothesized cause or a particular treatment or educational method. On such issues, one will find advocates on various sides of the issue. However, there are other more general issues, on some of which there is more of a consensus. This section will list some of the issues & positions that autistic people and parents of autistic people are active in. Some of the issues are specific to autism, but many are relevant to other disabilities. Laws on education of the disabled The Individuals with Disabilities Education Act (IDEA) and other laws that protect the disabled come up for renewal and/or are reviewed with an eye toward amendment on occasion. Many disabled people and parents of disabled people watch such proceedings closely and make their opinions known to their representatives. Inclusive Education Improving and even maintaining quality of education of the disabled is a continuing struggle even with federal and state laws. Since education in the USA remains largely under local control, many parents of the disabled find themselves acting as their own advocates to make sure the laws are upheld given the tendency of some localities to make decisions based on the idea that the expense of educating the disabled is more than they can handle. One of the trends in educating the disabled for the past few decades has been to include them in classrooms of typical students. Many parents and disabled people have this as a goal. Funding for research on autism Despite the fact that many of the general public find autism of some fascination, a good case can be made that private and government funding accorded research into autism is much less than that of some diseases and conditions that are rare relative to autism. Misplaced blame See section "History" about how parents used to be blamed for Autism. It was not that long ago that that was happening and people without knowledge of autism as it's currently preceived may well run across material from those times. The activism necessary to counter such thinking is thankfully much reduced by those who worked hard on the issue in the 1960s. Group homes The general trend in the housing of the disabled who cannot live independently has been away from the idea of large institutions toward the idea of group homes located in the community. Among the reasons cited: * Disabled who are separated from society have less chance to practice their social skills, which further cuts them off from society. The nature of autism sets people at a social disadvantage to begin with, and separation exacerbates the problem. * Some institutions have been poorly run. The fact that the institution is somewhat separated from the community reduces the chances that citizens will take sufficent note of the problems to effect change for the better. * Keeping disabled people and non-disabled people apart also has an effect on non-disabled people. If they have no contact with disabled people, they are less knowledgeable about disabilities and have less experience interacting with disabled people. There are on occasion drives to allow a group home in a neighborhood. If the neighborhood has never had one, people are naturally suspicious and unsure of what to expect. On many occasions, after the fact, neighbors of group homes have been willing to testify to the positives of having a group home in the neighborhood. I haven't mentioned other living options aside from group homes: many disabled live independently, and many live with only a minimum of assistance. The real issue being pressed goes beyond group homes: it encompasses the provision of appropriate housing and related services for all the disabled. _________________________________________________________________ _________________________________________________________________ Autism FAQ - Controversies _________________________________________________________________ See also section below, "History", for older controversies. These are subjects which can stir up debate on the AUTISM mailing list and would presumably do so in any diverse group of autistic people and people involved with autism. If you have to deal with autism, you should at least be aware that there are such points of controversy. In fact, it is likely the that no matter what this memo says on these issues, there will be complaints. Is Autism a Disability? Well-adapted autistic people and autistic people who are close to being sufficiently adapted to function independently have naturally brought up the question whether Autism should be considered a disability, or whether it should simply be considered a somewhat different kind of personality. On the other hand, there are certainly autistic people who need constant supervision and help simply to get through life. A related and dangerous question that people sometimes ask themselves is: "if my or someone else's autism could be 'erased', would I agree to that?" Inclusion in education and society How much? How much effort? What can society afford? How can society deny basic rights to individuals? How to approach the treatment of Autistic children See section above: "Treatment". There are several well-developed and widely used approaches the treatment of Autism and education of autistic children that are quite different, and parents of an autistic child might find themselves involved in such a program without being fully aware of the alternatives or the general opinions on the approach. In general, each of the methods of treatments has its enthusiastic supporters (or it wouldn't exist) and its detractors, thus there is a "camp" associated with each treatment. I shall attempt to list some major "camps" associated with dealing with autistic children. As I said, in each case, you might find yourself among people who believe a particular method is generally proven and will advise you to give their approach strong consideration. But happenstance might have placed you among other people who consider the very same approach to be of limited value at best. I could say that "there is no answer", but I cannot support such a claim: one of these groups of people may well turn out to be right and others wrong. One particular approach might one day become well-established as best. But there are other possibilities: perhaps different approaches will be shown to be effective for specific kinds of Autism stemming from different underlying causes; perhaps no single approach will be best for the majority of Autistic children. What I can say is that universal agreement on approaches to treatment has not been reached at this point despite what some people might tell you. You may choose to adopt one approach whole-heartedly. But you ought to at least be aware that there are likely to be sensible people who disagree with it and would suggest alternatives. It is not easy making such a choice. Some approaches which have large circles of adherents: * Use of Facilitated Communication to teach the autistic child to communicate. * Use of the Lovaas Method (or similar behavioristic methods) to teach the child to manage their behavior. * Use of Audio Integration Therapy to desensitize an autistic child from an oversensitivity to sounds. * Intervention in the autistic child's diet to determine if a sensitivity to substances within food is fueling the child's autism. The causes of autism Along with controversies on the treatment of autism are those caused by theories as to what causes it. There are people who get very excited one way or the other about the following questions: * Are some cases of autism caused by vaccinations? * Are some cases of autism caused by food allergies? * Are some cases of autism genetic? For each of the first two questions, there are vocal people who say "yes". For the last question, there are vocal people who say "no". Theory of mind While not a cause of autism, the "theory of mind" rubs some people the wrong way. Research funding While there is naturally a consensus among parents and professionals that more research would be helpful, there is some controversy as to what kind of research should be done. To some degree, this follows the controversey over the causes of autism, particularly in the area of genetic causes. Some say that research has already explored this area sufficiently and liken such research to other controversial genetic research areas such as research into the genetic causes of social behavior. The impetus to look for genetic causes to autism certainly is partially motivated by the perception that research into psychological and educational areas is often both expensive and inconclusive, in contrast to genetic research, which, when it does turn up some information, it is often conclusive. Reports of abuse through Facilitated Communication Just as the issue of recovered memories of abuse has raised controversy, the fact that some people disbelieve the reliability of communication produced through facilitation leads to controversy in the use of it as evidence for the purposes of investigations of potential abuse and as legal evidence in abuse trials. The use of aversives to manage behavior On one side of the issue is the necessity to deal with atypical behaviors ranging from benign but unusual to dangerous; on the other side is a history of misuse of aversives as well as suspected misuse of aversives, the assertion of some that other methods achieve the goals as well or better, and the fundamental issue of human rights. There are dangerous behaviors, there are people who would be able to function more freely in society if an effective way is used to teach them to manage their own behavior, and there have been people who think that such benefit is worth the use of aversives. There are people who believe aversives are never helpful; there are people who believe that if such methods are sanctioned, that the sanction will be abused, that someone, somewhere will be overusing the methods. And there is a lot of suspicion on the subject. See also "Treatment". Autism research and support organizations Among the research and support organizations in the USA are ASA, ARI, CAN, and NAAR, and there are more. I hate to air the autism research/support community dirty laundry and don't know all the details and often ignore what I hear, but it is likely that the multiplicity of organizations reflects more than a multiplicity of functions, it also reflects some of the conflicting views on approaches to treatment, research and support, and perhaps on occasion it simply reflects politics within the autism research/support community. Discussions on the online forums will on occasion air & reflect these disagreements. Having said that, there are perfectly valid functional reasons for a multiplicity of organizations, e.g. orientation towards a particular kind of support or research. While having them all within one friendly unbrella organization might make some people more comfortable and perhaps make all those organizations easier to find, there are also advantages to independence. How much public funding should be dedicated to special education Is (such-and-such a person) autistic? The "Rainman" donation to the Autism Society of America This is a short explanation of a brouhaha that you might read reference to. Bernard Rimland served as a free technical advisor for the movie Rainman. Dustin Hoffman responded with a donation which was sent to the Autism Society of America, who spent the money. Bernard Rimland claims that the donation was intended to be sent to the Autism Research Institute but was sent to the Autism Society of America by mistake. As of 5/97, there is a suit in court on the subject. I have no information on the ASA's side of the case, but Bernard Rimland has shown letters from Dustin Hoffman and Barry Levinson (director of Rainman) that support his claim. _________________________________________________________________ _________________________________________________________________ Autism FAQ - Coping _________________________________________________________________ Where Autistic People generally live In general, autistic people have the same living options as people with other disabilities, which ideally are matched with the individual's capabilities. Children: While there were times in the past when autistic children would likely be located at an institution, today they almost invariably reside with their parents. Respite: Families caring of a disabled person can be tied down to a much greater extent than than other families. Autistic children are individuals and the amount of supervision autistic children require varies, but in general, there is an extra burden on the parents which in many cases is severe. Providing the care and supervision can possibly require as much effort as would an additional full time job. Respite service is typically provided by government agencies to give such families an occasional break from the responsibilities. It may consist of providing someone to look after the child for a few hours, or it may be a group home (see below) set up to take the child for a weekend on occasion. Adults: Autistic adults unable to cope with their own residence also were likely to live in an institution such as a state-run facility. Alternatively, they might live with relatives. In place of institutions, now group homes and assisted living are more generally used. A group home might have 4 permanent residents, with two staff members for most of the waking hours and 1 staff member while the residents sleep. Assisted living is for autistic people able to cope under less supervision than a group home provides. The exact situation would be tailored to the individuals, but an example would be two autistic people sharing an apartment, visited by a representative of social services daily. Those families who take care of adult autistic family members might make use of respite services (see above). Other aids to living and communication For basic communication, nonverbal autistic people are sometimes taught sign language, or to use communication boards or electronic communication devices such as the Cannon Communicator. The latter is similar to a Brother labelmaker, being an electronic device designed to allow the disabled who can type to communicate during daily life. Facilitated Communication (see under "Educational Methods") can be used in conjunction with a Canon Communicator or communication board, but in other cases, the individual may be able to point or type independently. The Internet has been a boon to some autistic people, opening avenues of communication that are more suited to their abilities than face-to-face communication. Social Signal Dogs are rarely used but have been discussed on the list. It is a working dog, similar to a seeing eye dog that assists an autistic person in their daily life. _________________________________________________________________ _________________________________________________________________ Autism FAQ - History _________________________________________________________________ It has been presumed that before the discovery of the pattern of symptoms now known as autism, that people did exist with the syndrome, and were lumped together either with the mentally retarded or the insane. We might expect to have inherited sufficiently-detailed descriptions of such people that we would be able to see a pattern suggesting autism among them, but there have not been many descriptions that suggest autism. One such description is of a boy found in the 19th century and named Victor. At the time, some assumed he had grown up without human contact in the forest. The story was recorded in the book The Wild Boy of Aveyron. Discovery Leo Kanner published his first paper identifying autistic children in 1943, asserting he had noticed such children since 1938 (see reference to Kanner, "Autistic Disturbance of Affective Contact", see Selected Articles section below). Before Kanner noticed and recorded a pattern of symptoms, such children would be classified as emotionally disturbed or mentally retarded. Kanner observed that these children often demonstrated capabilities that showed that they were not merely slow learners, yet they didn't fit the patterns of emotionally disturbed children. Thus he invented a new category, which he called Early Infantile Autism, which has since sometimes been called Kanner's Syndrome. Hans Asperger (see section Well Known Researchers and Practicioners and reference to Asperger, "Autistic Psychopathy in Childhood" in Selected Articles section below) essentially made the same discoveries at the same time, independently of Kanner, but the patients he identified all had speech, so the term Asperger's Syndrome or Asperger Syndrome is often used to label autistic people who have speech. The word "autism" Note that before before Kanner incorporated it into his label, the word "autism" already had a meaning: "escape from reality" (coined, I think, by Eugen Bleuler in 1912, who had already coined the term "schizophrenia"). Kanner borrowed Bleuler's term either because Kanner indeed believed the children were trying to escape from reality, or he felt that whatever was going on, the children gave that impression. Today, one hears the word autism in the context of Kanner's syndrome much more often than one hears it used with Bleuler's original meaning, and someone who regularly deals with Kanner's syndrome might misunderstand when the word is used in its original sense. For example, if a psychologist says "I sense some autism in this patient," s/he could be using established terminology to say the particular patient is escaping from reality, yet s/he would not necessarily be talking about someone who suffers from the developmental disorder that this FAQ is about. Older Theories/Origin After Kanner and Asperger's discovery, parents were observed to treat their autistic children without the warmth and affection which is normally observed between parent and child. Freudian psychology had a ready-made theory waiting for this syndrome and this observation: that if certain basic psychological bonds between parent and child fail to form that the child will fail to progress. A Freudian theory of autism remained in vogue in the 50s and early 60s. Though the theory fit Freudian psychology hand-in-glove, there are two obvious alternative possible explanations that the Freudian theory dismisses: one is that the parents' observed stilted interaction with the child was the result of the child's Autistic behavior; the other is that Autism is an extreme instance of a genetically-inherited personality trait that was present to a milder extent in such observed parents. Older Treatments Based upon psychological theories of the basis of autism, some children were removed to their parents' home and put in foster care to see if they would recover. When this proved insufficient to cure them, some attempts were made to bring children through psychological states which they missed out on by virtue of being in a dysfunctional family. Some success has been reported (as has been reported for every treatment ever put forward) but no clear-cut success that would lead to universal, long-term adoption of the methods. Changes in meaning of the word autism after Kanner Above and beyond the distinction between the concept that Bleuler coined the word "autism" to label and the syndrome that is the subject of this document, the syndrome has been broadened somewhat since Kanner first published his paper. Kanner reported a rate of occurrence of 1 in 10000 whereas the ASA states the rate as 15 in 10000. Kanner first identified people who were clearly not mentally retarded (since this was the unexplained group of people at the time). Since then, it has been observed that some mentally retarded people have autistic symptoms whereas others don't; so it is thought that the conditions overlap. This explains some of the difference in the reported rates of occurrence, though some now claim that it doesn't fully explain it. Other terms that have been applied to what we now call "autism". Childhood schizophrenia, infantile autism, Aspergers Syndrome, Kanner's Syndrome. Probably lots of autistic people used to be termed retarded, or schizophrenic, though obviously those terms (as then used) were not as specific as our current "autism" label. Politics The parents of autistic children are naturally less-than-objective about their own roles in the cause of their childrens' conditions. In the 60s, this was fueled by a widespread belief that the condition was caused by the way the parents treated their children. When evidence to the contrary (see section Theories) was uncovered yet not widely known, parents had to act as their own advocates. Parents still sometimes find themselves in the position of trying to explain how the fault does not lie with themselves since the general public's information on autism is still sometimes dated or wrong. Controversies There remain a lot of controversies about treatment and probably have been from almost the first. See section above, "Controversies". Past Articles/Books This article and book, written by a prime advocate of the Freudian theory of the cause of autism were highly influential in attitudes about Autism for a long time. Bruno Bettelheim. "Joey: A 'mechanical boy.'" Scientific American, 200, 116-127. Bruno Bettelheim. The Empty Fortress: Infantile autism and the birth of the self (Collier-MacMillan, 1967). _________________________________________________________________ _________________________________________________________________ Autism FAQ - Glossary of terms and acronyms _________________________________________________________________ If you read messages on the AUTISM list, you may well run into terms or acronyms that aren't explained. If the term/acronym you are looking for isn't listed here, you might scan the following sections: "Similar Conditions", "Treatment", "Educational Methods", "Organizations and Services", and "Initiatives". (Note that messages posted on the AUTISM list will sometimes include some of the well-established e-mail acronyms (e.g. BTW="by the way", IMO="in my opinion", IMHO="in my humble opinion", LOL="laughing out loud", ROFL="rolling on floor laugning, FWIW="for what its worth"). There are many books on e-mail, the Internet, and online services that provide lists of these.) For other glossaries, see http://www.autism-society.org/packages/glossary.html, http://www.hyperlexia.org/acronyms.html, http://web.syr.edu/~rjkopp/abbreviations.html, and http://www.alliancelink.com/users/autism/ AAPEP