Autism Frequently Asked Questions Memo - Full Text _________________________________________________________________ Date December 15, 2009 Compiled by John Wobus Web Address http://www.autism-resources.com/autism.faq.html Web Address of alternate formats http://www.autism-resources.com/faqformats.html Corrections Please send corrections to jwobus1@twcny.rr.com Related info (Autism Resources web page) http://www.autism-resources.com Please read section below "What this FAQ memo is and what it isn't" _________________________________________________________________ Contents * Autism FAQ - Mailing List, Archives, FAQ Memo, Web Page & Online Information * Autism FAQ - Definition of Autism * Autism FAQ - Advice for the parent who just discovered their child is autistic * Autism FAQ - Characteristic Behavior * Autism FAQ - Similar Conditions * Autism FAQ - Theories and Causes * Autism FAQ - Treatment * Autism FAQ - Educational Methods * Autism FAQ - Advocacy * Autism FAQ - Controversies * Autism FAQ - Coping * Autism FAQ - History * Autism FAQ - Glossary of terms and acronyms * Autism FAQ - Popular Attitudes and Entertainment * Autism FAQ - Well-known Autistic People * Autism FAQ - Well-known Researchers and Practitioners * Autism FAQ - Organizations and Services * Autism FAQ - Initiatives * Autism FAQ - Charities and Foundations * Autism FAQ - Bibliography * Autism FAQ - Acknowledgements _________________________________________________________________ Autism FAQ - Mailing List, Archives, FAQ Memo, Web Page & Online Information _________________________________________________________________ The AUTISM Mailing List The AUTISM Mailing List (autism@lists.apana.org) is an open e-mail-based forum to discuss autism currently hosted by APANA, and administered by volunteers (autism-panel@hunter.apana.org.au). The list was previously hosted by St. John's University between 1992 and 2006. It includes parents, autistic people, researchers, professionals, students, and other people interested in autism. Discussion is lively: many weeks see 500 or more postings. It is a very good forum for posing a question for which you do not know who would have the answer. There is a FAQ memo specifically about the list at http://lists.apana.org/autism The mailing list is administered by the software, Mailman, which gives you the ability to subscribe, sign off, get past messages, stop mail during vacations, get the mail in a digest, and other things, all without the necessity of asking someone to do it for you. You can do these things at http://lists.apana.org/cgi-bin/mailman/listinfo/autism. Here are brief instructions for some of the more common requests it can handle: Subscribing to the list Fill out the form, giving at least your name and e-mail address, under "Subscribing to autism". Mailman will reply with a confirmation request including its own instructions. Once you are subscribed, you will receive all mail sent to autism@lists.apana.org, and any mail you send to that address will be sent to all the members of the AUTISM mailing list. You will also be given a password to use for changing your options and unsubscribing. Signing off of the list Enter your e-mail address in the appropriate box under "autism Subscribers", click the "Unsubscribe or edit options" button, enter your password, and click the "Unsubscribe" button. Receiving the postings in digests Once you are subscribed, you can adjust Mailman to send the postings to you as one long message per day instead of the usual one hundred or more. To set this up, act as above, but click the "Log in" button instead of the "Unsubscribe" button. Then, under "Your autism Subscription Options", click "On" next to "Set Digest Mode", and finally click the "Submit My Changes" button at the bottom. Note: do not send requests to subscribe or sign off to the list itself. This practice results in thousands of people getting lots of extra messages. Be careful to send Mailman commands to Mailman, or contact the folks who run the list. Who to e-mail about issues relating to the AUTISM mailing list If you have a question about autism, you can join the list and ask it to the list members. If you need to contact someone about an issue with the list itself, you can contact the list administators, (autism-panel@hunter.apana.org.au). AUTISM Mailing List Archives The Mailman software keeps an archive of all the messagesever posted to the AUTISM Mailing List, and you can make it search and retrieve messages from the archive. Instructions and a password on how to do this are available from the list owners upon becoming a member of the list. After the list's migration from St. John's University in January 2006, the archives can no longer be searched via e-mail. Other Mailing lists See section "Initiatives" below about ANI-L, and other lists. Frequently Asked Questions Memo (this memo) An introduction to autism to answer questions that people frequently have about it. The memo began in early 1993 and has grown as of late 1998 to over 7500 lines of text. The material is largely factual material posted, sometimes repeatedly, on mailing lists that discuss autism. If people ask about it, it belongs here. Web address of FAQ Memo: http://www.autism-resources.com/autism.faq.html Other versions of this memo are available. In one, recent changes to the memo are marked; in the other, the memo is broken into smaller pages of 500 lines each for people with web browsers that cannot handle 3000+ lines. Both of these are at the "Autism Resources" web site, specifically through the page with URL: http://www.autism-resources.com/faqformats.html What this FAQ memo is and what it isn't The nature and treatment of Autism remains sufficiently controversial that in order for a FAQ memo to avoid giving you just one viewpoint, it cannot answer the difficult question: "which treatment really works". And the FAQ memo certainly doesn't give medical advice. What a FAQ memo does is document facts such as definition of terms, references to books, organizations, and treatment programs, even "who is saying what about what"; essentially, background material both to help you understand what is being said in the online discussions, in books, in talking with professionals, and in understanding what people are saying when they tell you about the best methods. The FAQ memo avoids making judgements about treatments (with one big exception: it gives no credence to the idea popular in the 1950s that Autism is caused by poor parenting), but this in itself skews its message: by documenting the most unlikely treatments along with the mainstream ones, it can induce the reader to give them undue credit. Please keep this in mind. Also, the FAQ memo is certainly imperfect both in its accuracy and its avoidence of opinion. But it is constantly improved through the suggestions and corrections of its readers. Web Page & Other Online Information In general, this FAQ memo does not list online resources: rather than fill this memo with URLs for you to type in, I have assembled them in one convenient web page to compliment this memo. The web page (which includes this FAQ Memo) is called "Autism Resources" and is at: http://www.autism-resources.com/ _________________________________________________________________ _________________________________________________________________ Autism FAQ - Definition of Autism _________________________________________________________________ The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV): DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3) (1) qualitative impairment in social interaction, as manifested by at least two of the following: a) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction b) failure to develop peer relationships appropriate to developmental level c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) d) lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids ) (2) qualitative impairments in communication as manifested by at least one of the following: a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others c) stereotyped and repetitive use of language or idiosyncratic language d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following: a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus b) apparently inflexible adherence to specific, nonfunctional routines or rituals c) stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements) d) persistent preoccupation with parts of objects B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction (2) language as used in social communication (3) symbolic or imaginative play C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder _________________________________________________________________ The following definition is from the Autism Society of America: AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately fifteen out of every 10,000 births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism. The symptoms are caused by physical disorders of the brain. They include: 1. Disturbances in the rate of appearance of physical, social and language skills. 2. Abnormal responses to sensations. Any one or a combination of senses or responses are affected: sight, hearing, touch, pain, balance, smell, taste, and the way a child holds his body. 3. Speech and language are absent or delayed while specific thinking capabilities might be present. 4. Abnormal ways of relating to people, objects and events. Autism occurs by itself or in association with other disorders which affect the function of the brain such as viral infections, metabolic disturbances, and epilepsy. It is important to distinguish autism from retardation or mental disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques. The severe form of the syndrome may include extreme self-injurious, repetitive, highly unusual and aggressive behavior. Special educational programs using behavioral methods have proven to be the most helpful treatment. AUTISM IS TREATABLE -- Early diagnosis and intervention are vital to the future development of the child. _________________________________________________________________ Note: an example of a dictionary-definition of autism is: "absorption in fantasy as escape from reality". Obviously there is a big difference between the traditional definition documented by dictionaries and the syndrome this memo addresses. The difference stems from changes in word usage: in the 30s and 40s, psychologists first observed a number of children with the above symptoms and called it "early infantile autism", borrowing the word "autism" which had already been applied by psychologists to describe people who try to escape from reality. Today, most discussion of autism (at least in the USA) centers on children diagnosed as having "early infantile autism" and everyone refers to it simply as "autism". But occasionally there is confusion when someone who means "early infantile autism" talks to someone who is thinking of the original definition. In this document, we will use the term "autism" in the sense of "early infantile autism" and refer explicitly to "early infantile autism" only when discussing both senses of the word. The definition of the syndrome listed above is oriented to children, but note that such children do not outgrow their autism. Much of the literature on autism deals with children because educating them is such a big issue that more research, education, and writing on autism is about children than adults. _________________________________________________________________ _________________________________________________________________ Autism FAQ - Advice for the parent who just discovered their child is autistic _________________________________________________________________ I solicited and received such advice on the mailing list and received a number of replies which are all listed verbatim in a separate memo: "Advice to Parents who Discover their Child is autistic" (URL: http://www.autism-resources.com/advice-to-parents.html). This is a very brief summary of some of the items: Some Things To Do * Make certain that the determination that your child is autistic was made or verified by a professional who has experience with autistics. * Talk to other parents of autistic children (see paragraph below on organizations). Books Michael Powers's Children With Autism: A Parent's Guide has a good reputation, but there are some newer books aimed at parents. Another book with a good reputation is Elizabeth K. Gerlach's Autism Treatment Guide from Four Leaf Press. There are a number of books describing parents' experiences with autism and though some may be slanted a particular kind of treatment, probably all have value in allowing you to share the experience of other parents. Catherine Maurice's Let Me Hear Your Voice is one example. Treatment & programs Every treatment for autism has its detractors and none has proven to benefit every case. Thus, the task of judging the effectiveness of potential treatments will ultimately fall on you--to a larger extent than you will feel qualified to make. If the professional to whom you take your child strongly recommends some program or treatment, know that there are others who will recommend some other just as strongly. Note that many programs are made up from parts of several methods. Organizations In the USA, the national society is the Autism Society of America (ASA). It has local and state chapters, so it may help you to find a local support group. Another organization of value is the Autism Research Institute (ARI), which includes publications. Things to watch out for * Miracle cures and people who tell you that their way is your child's only hope. * People who think your child's autism is an emotional disturbance or is your fault. * Teachers, therapists, social workers, etc. working from outdated information. _________________________________________________________________ _________________________________________________________________ Autism FAQ - Characteristic Behavior _________________________________________________________________ Autistic children display unusual behavior. A typical autistic child's behavior is likely to include some of the following: * no speech * non-speech vocalizations * delayed development of speech * echolalia: speech consisting of literally repeating something heard * delayed echolalia: repeating something heard at an earlier time * confusion between the pronouns "I" and "You" * lack of interaction with other children * lack of eye contact * lack of response to people * treating other people as if they were inanimate objects * when picked up, offering no "help" ("feels like lifting a sack of potatoes") * preoccupation with hands * flapping hands * spinning * balancing, e.g. standing on a fence * walking on tiptoes * extreme dislike of certain sounds * extreme dislike of touching certain textures * dislike of being touched * either extremely passive behavior or extremely nervous, active behavior * extreme dislike of certain foods * behavior that is aggressive to others * lack of interest in toys * desire to follow set patterns of behavior/interaction * desire to keep objects in a certain physical pattern * repetitive behavior (perserveration) * self-injurious behavior * "islets of competence", areas where the child has normal or even advanced competence. Typical examples: + drawing skill + musical skill + arithmetic + calendar arithmetic + memory skills + perfect pitch There are other conditions which sometimes coincide with autism: * synesthesia(an unexpected sensation arises when a particular sense modality is stimulated) * Cerebellar abnormalities revealed by MRI scans * raised levels of serotonin in the brain _________________________________________________________________ _________________________________________________________________ Autism FAQ - Similar Conditions _________________________________________________________________ There are a number of diseases which cause children to display some of the symptoms of autism. Also, on occasion, brain injury has caused people to display some of the symptoms of autism. Some diseases: Deafness Some children who exhibit symptoms similar to autism have been discovered to be deaf. A child should always have his hearing checked before being identified as autistic. Galactosemia Inborn error in carbohydrate metabolism. [Inability to metabolize galactose?] Heller's Disease Normal development to age 3 or 4, then abrupt onset of fretfulness, negativism and anxiety. Regression of mental development and gradual loss of speech. LKS "Landau-Kleffner Syndrome" Also Acquired Childhood Epileptic Aphasia. Very rare disorder. Typical profile: normal development and age appropriate language first 3-7 years; Loss of receptive language while retaining some expressive language; "Telegraphic" speech--few verbs; Suspicion of deafness; Child frustrated, puzzled by change in himself; Autistic-like behaviors; normal or above normal non-verbal IQ score; abnormal EEG, with or without seizures. Some practitioners suspect that some cases of Childhood Disintegrative Disorder or "late outset" autism may be Landau-Kleffner Syndrome. PKU "Phenylketonuria" A genetic disorder of the metabolism which will result in brain-damage during the first years of life unless special dietary measures are taken. Inadequate production of the enzyme which converts the amino acid phenylalanine into another amino acid, tyrosine. The extra phenylalanine accumulates in body fluids and converts to several chemicals that damage the brain. Symptoms include mental retardation as well as some of the symptoms of autism. PKU has been eliminated by screening all children immediately after birth so proper dietary measures can be taken. Rett's Syndrome a neurological disorder that occurs only in girls. Unlike autism, girls initially show normal development, then revert. The initial symptoms include some that are associated with autism. From DSM IV: DIAGNOSTIC CRITERIA FOR 299.80 RETT'S DISORDER (females only) A. All of the following: (1) apparently normal prenatal and postnatal development (2) apparently normal psychomotor develop (3) normal head circumference at birth B. Onset of all of the following after a period of normal development: (1) deceleration of head growth between ages 5 and 48 months (2) loss of previously acquired purposeful hand skills between ages 5 and 30 months with subsequent development of stereotyped hand movements (e.g. hand wringing or hand washing) (3) loss of social engagment early in the course (although social interaction often develops later) (4) appearance of poorly coordinated gait or trunk movements (5) severely impaired expressive and receptive language development with severe pyschomotor retardation. Childhood Disintegrative Disorder