List of Support Groups for Children with Autism, Aspergers, and PDD

· ABMD (Autism BioMedical Discussion)—High volume group for discussions by parents and professionals of research and biomedical interventions as they apply to the investigation and treatment of autistic spectrum disorders. To Join: Send a blank email to abmd-subscribe@yahoogroups.com or join online.

· ANDI_ADI (Autism Network for Dietary Intervention)—This is an ADVANCED autism-diet discussion group moderated by ANDI, the Autism Network for Dietary Intervention. The purpose of this list is to provide a forum for discussion regarding advanced dietary treatment options such as the Specific Carbohydrate Diet (SCD), the Body Ecology Diet (BED), grain-free, sugar-free, low oxalates, supplementation, and other dietary interventions for children with autism spectrum disorders. To Join: Send a blank email to ANDI-ADI-subscribe@yahoogroups.com or join online.

· Asperger—An excellent listserv for discussions of all aspects of Asperger Syndrome (AS) and other forms of high-functioning autism, including Pervasive Developmental Disorder (PDD). Subscription requires owner approval. This is a well established, high volume autism support list. To Join: Send email with the message, SUBSCRIBE ASPERGER to listserv@listserv.icors.org or join online. Listowners: Head Listowner - Ellen Dietrick; Co-listowners - Karen Reznek, Sandy Sebree, Phil Schwarz , Dave Spicer, Tee Forshaw, Barry Conner

· Aspergers Support—Mailing list for parents of children with Asperger's Syndrome or High Functioning Autism. To Join: Send a blank email to AspergersSupport subscribe@yahoogroups.com or join online.

· Aut-2B-Home (Autism To Be Homeschooled)—Listserv for homeschooling children with autism. To Join: Send email with the message, SUBSCRIBE AUT-2B-HOME to LISTSERV@LISTSERV.ICORS.ORG or join online.

· Autinet—An unmoderated parent support group and news service for Autism and Asperger's Syndrome, running since 1996. To Join: Send the message with "SUBS" in the subject line to autinet@autinet.org. In your message to listowner Peter Wise include a little about yourself, your interest in Autism and Asperger's Syndrome, and your COUNTRY of residence (for statistical reasons).

· Autism ABA— The Autism and ABA list is an open, unmoderated forum for discussing anything related to autism. Much of our discussion centers around Applied Behavior Analysis (ABA), including areas of ABA such as teaching Verbal Behavior (VB) and Natural Environment Training (NET). We're a quiet list, but we have a healthy mix of parents, professionals, and others involved with autism in some way. To Join: Send a blank email to autismaba-subscribe@yahoogroups.com or join online. Listowner: Christina Burk ChristinaBurkABA@aol.com

· Autism Adolescence—Autism Spectrum Disorders and adolescence support for parents who have pre-teen or teenaged children. Please free to share your stories, advice, woes, rants, tears, and especially laughter here with us. THIS IS A HIGH VOLUME LIST.. http://www.geocities.com/alleycatjo/Autism.html

· Autism Aspergers—A high quality, high volume support list where parents share stories, treatments, therapies, ideas, advice and support about their children with moderate to high functioning autism or Aspergers syndrome. To Join: Send a blank email to Autism-Aspergers-subscribe@yahoogroups.com or join online.

· Autism Awareness Action—A moderately high volume group to help parents find autism related resources and support, not state specific but is associated with a Texas autism group. To Join: Send a blank email to autism-awareness-action-subscribe@yahoogroups.com or join online.

· Autism Behavior Problems—Helpful discussion, aid and support in dealing with these behaviors present in the autistic child. Support on topics for all ranges of behaviors...self stimulating, self injurious, aggressive, inappropriate etc and different ways of addressing these problems. To Join: Send a blank email to AutismBehaviorProblems-subscribe@yahoogroups.com or join online.

· Autism in Girls—Restricted membership! This is a high quality list for parents and professionals who wish to exchange information regarding treatment of autism in girls, how autism effect females in the family, and any other issues dealing with autism and females and/or the comparison of males and females with autism. To Join: Send a blank email to Autism_in_Girls-subscribe@yahoogroups.com or join online.

· Autism—The oldest ongoing discussion list for autism, provides general autism support.
To Join: Send email with the message subscribe [password] [digest|nodigest] [your email address] to autism-request@lists.apana.org [Commands in brackets are optional.] or join online. Listowner: Carolyn Baird. Panel Representatives: Ray Kopp, Linda Carlton, Kevin Kramer

· Chelating Kids 2—A restricted discussion list of parents with children who have autism/ mercury poisoning and are using chelation. To Join: Send a blank email to chelatingkids2-subscribe@yahoogroups.com or join online.

· Children with Autism—High volume parent support list for autism. To Join: Send a blank email to children_with_autism-subscribe@yahoogroups.com or subscribe online.

· DTT-NET (Autism: AVB: ABA: Verbal Behavior)—A moderated list for parents and professionals running home (and school) programs to discuss concerns and share their knowledge of Applied Verbal Behavior (AVB), a specialty within the field of Applied Behavior Analysis (ABA). To Join: Send a blank email to DTT-NET-subscribe@yahoogroups.com or join online. Listowners: Jenn Godwin and Steph Hulshof

· Enzymes and Autism—The Enzymes and Autism forum is a high volume list for the discussion of digestive enzymes (and many other types of supplements) and thier effect on the autistic spectrum/PDD, attention deficit, sensory integration, digestion/malabsorption, and food sensitivities/allergies. To Join: Send a blank email to EnzymesandAutism-subscribe@yahoogroups.com or join online.

· Floortimers Floor Timers—A small group, but an important topic. Parents, caregivers, therapists, educators and related professionals who work with children using using a floortime approach share ideas and provide support for one another. To Join: Send a blank email to floortimers-subscribe@yahoogroups.com or join online.

· GF CF Kids (Gluten-Free Casein-Free Kids)—This high volume, unmoderated list provides discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children's diets. To Join: Send a blank email to GFCFKids-subscribe@yahoogroups.com or join online.

· Gluten-Free Casein-Free Recipes—High volume group to share recipes for cooking a gluten-free, casein-free diet for chidren. To Join: Send a blank email to GFCFrecipes-subscribe@yahoogroups.com or join online.

· HDO Therapy for Autism—Hyperbaric Oxygen Therapy (HBOT), or more accurately, High Dosage Oxygen Therapy (HDOT} is fast becoming one of the more successful therapies for children with Autism. Autism is a neurological injury whether caused by toxicity, birth injury or unknown. Some amazing results are being obtained, especially with young children. To Join: Send a blank email to HDOTherapyforAutism-subscribe@yahoogroups.com or join online.

· Home Schooling Aspies—Support list for Christian moms who homeschool (or are seriously considering homeschooling) their children who have been diagnosed with Asperger's Syndrome (or suspect their child has Asperger's Syndrome). All are welcome to join, but there will be a Christian focus to many of the posts. We are here to encourage, support, and pray for one another as we do our best to teach our Aspies at home. To Join: Send a blank email to homeschoolingaspies-subscribe@yahoogroups.com or join online.

· Parenting Autism—An excellent, high volume parent support group to share the day-to-day experience of being a parent of an autistic child. To Join: Send a blank email to Parenting_autism-subscribe@yahoogroups.com or join online.

· PDD BP KidS (Pervasive Development Disorder Bipolar Kids)—This group is for parents and primary caregivers of children diagnosed with PDD (Pervasive Developmental Disorder), Autistic Spectrum Disorder (Autism, Asperger's Syndrome, PDD-NOS, Rhett's Syndrome, Childhood Disintigrative Disorder), and BP (Bipolar Disorder). To Join: Send a blank email to PDD-BPkids-subscribe@yahoogroups.com or join online.

· Verbal Behavior—A high volume moderated forum for teaching verbal behavior (VB) within a program of applied behavior analysis (ABA). Discussions include difficulties in the development of communication seen in most individuals with autism and other related disabilities, with an emphasis on functional language and motivational variables using ABA techniques. To Join: Send a blank email to VerbalBehavior-subscribe@yahoogroups.com or join online. Listowner: Christina Burk ChristinaBurkABA@aol.com

Rage-Control for Children on the Autism Spectrum: Advice for Parents and Teachers

"Any tips for dealing with a high functioning autistic child who flips into a rage at the most inopportune times for no apparent reason whatsoever? This erratic behavior occurs at school as well."

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Comment:

Hello Everyone: I have been a member of this website for about a year.....my son is 5 years old and has a diagnosis of Hypoplasia of the Corpus Callosum, Aspergers and Sensory Processing Disorder. The reason I am writing all of you is because my neighbor has come to me for advice. She has a 10 year old son who has been diagnosed with ADHD and takes meds....not sure what??....anyway, she was recently told by the school that they thought her son had Aspergers and she should talk to her Pediatrician. She came to me because she knows about my son and his "issues" and she asked my opinion......it was hard but I said Yes, I too think he has Aspergers. I urged her to get an evaluation but I don't know where to start because her son is much older and getting a later diagnosis. So, my questions are........what resources are helpful for this age group to get started on this journey? What websites, books, etc. can you recommend for her? She is VERY overwhelmed right now......which I can imagine because I have been there and I am sure you can relate too! Thank you in advance for any help or advice you can offer!!!!!

Test Your Knowledge of Asperger’s Syndrome

Listed below are the three main categories of impairments in Aspergers. Under each category are several possible characteristics. Indicate with a Yes or No whether each characteristic listed is indicative of Aspergers.

1. Impairment in Social Interaction:

a. Odd facial expressions

b. Difficulty judging social distance

c. Overly friendly

d. Inappropriate responses to approaches of others

2. Impairment in Communication:

a. Inappropriate questions/comments

b. May be non-verbal

c. Good at thinking abstractly

d. Delay in development of language

3. Restricted and/or Repetitive Patterns of Behavior, Interests and Activities:

a. Inflexibility regarding routines

b. Severe self-abuse

c. Stereotyped motor mannerisms

d. Little to interest them

Aspergers or Not?

Below are three vignettes, each describing an individual with certain difficulties. Indicate whether you believe the paragraph describes an individual with Aspergers.

Charlie was a boy in his mid-teens. He attended a school for students with special needs. He was verbal, but at times difficult to understand, partly because of his articulation and partly because his sentences were often constructed incorrectly. He rarely initiated conversations, unless to talk about his interest in movies. He was not particularly interested in his peers, although it did not seem to matter to him that he had no real friends. He was fairly accomplished in math, but was reading at a 3rd grade level at age 14. His full-scale I.Q. was 68.

Robert, a man in his mid-twenties, complained he felt uncomfortable around people. He had decided he had Aspergers. He worked as an accountant and was competent at his job. He did not feel particularly depressed, although complained of feeling anxious when forced to interact with others.

Mark, an eleven year old in the public school system, frequently got into serious trouble with his teachers. He was clearly bright, but often refused to do his work, saying he did not have to if he did not want to. He was a computer whiz, able to fix problems with the computer even his teacher could not solve. In fact, his interest in computers seemed to overshadow nearly all aspects of his life. He tended to interact poorly with other kids, misreading their social cues, and becoming very angry if they tried to interfere with his use of the computer.

Answer Key—

1. Impairment in Social Interaction:

a. Yes

b. Yes

c. No

d. Yes

2. Impairment in Communication:

a. Yes

b. No

c. No

d. No. However, this is somewhat of a trick question. The DSM IV indicates there can be no delay in the development of language to qualify for an Aspergers diagnosis. On the other hand, Attwood indicates a significant percentage of Aspergers kids do have delayed language, although they are speaking fluently by age 5.

3. Restricted and/or Repetitive Patterns of Behavior, Interests and Activities:

a. Yes. Inflexibility can occur in Aspergers, but is not required for the diagnosis. Restricted patterns of behavior, interests and activities, however, are quite common.

b. No. There can sometimes be self-injurious behavior, but severe self-abuse is much more likely to be indicative of autism.

c. Yes. Stereotyped motor mannerisms can occur in Aspergers, although serious problems in this area occur more often in autism.

d. No

Aspergers or Not?

The extent of Charlie’s language difficulties and his cognitive difficulties rule out the diagnosis of Aspergers. A more appropriate diagnosis would be autism, albeit fairly high-functioning.

This case is more complicated. Although Robert may qualify for an Aspergers diagnosis, there is not enough information in the vignette to substantiate this. His feelings of discomfort around people might suggest Aspergers, but they might just as well be indicative of another disorder, such as schizoid personality. Additional information about such issues as his use of language and any problems with perspective taking would help in formulating the diagnosis.

Mark has Aspergers. His refusal to do school work stems from his difficulty recognizing the social rules, i.e., kids are in school to work, as well as his inability to recognize the importance of restraint in his remarks. Computers and computer games are his area of special interest.

Asperger's: Daily Stresses and Others' Reactions

There is yet another aspect to the diagnosis of Autism Spectrum Disorder (ASD) that further complicates the task most families face. This aspect is that the day to day, hour by hour, moment by moment experience of life with a youngster on the spectrum may be profoundly affected in very difficult and disconcerting ways.

Unquestionably, there is tremendous variance here. Some ASD kids are relatively quiet and docile and in this respect, easier to live with. Others are quite unpredictable, even volatile, and extremely hard to manage. The most simple, mundane things most people take for granted – the natural, unquestioning way people get through the day - moms & dads of ASD kids may be unable to do. For example, some kids perseverate in ways that turn family life upside down and some become profoundly upset by the way they think things are supposed to be. Some are terrible sleepers and some may be difficult to bring out in public because of behavioral outbursts.

While the moms & dads of ASD kids desperately need time away from them, this issue, too, tends to be more complicated than in families with typical kids. Babysitters for such kids tend to be quite difficult to find. Many teenaged babysitters are unable and unwilling to deal with the challenges such kids provide and many moms & dads feel uneasy leaving their youngster in this situation. Similarly, it is often impossible to impose on one’s neighbors, friends, or even family the way many moms & dads do; one cannot simply ask to drop the youngster by while one goes to the store.

Others' Reactions—

The reaction of others often complicates the difficulties moms & dads face. One of the most painful aspects of raising a youngster on the autism spectrum can be the stares, disapproving looks, and critical remarks from passersby. This issue is often particularly problematic in families in which the kids look outwardly normal (and most of them do).

Because they look normal and are usually quite bright, kids (and adults for that matter) with Aspergers are are especially likely to be misperceived as willfully defiant. Many times their “defiant” behavior is due to misreading a situation or being incapable of effectively dealing with frustration. Sometimes moms & dads themselves do not realize their kids are not intentionally thwarting authority. Unfortunate confrontations in schools are often due to teachers and school administrators misunderstanding the disorder.

Raising Kids with Asperger's and High-Functioning Autism: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they imagined they had. Moms and dads have their own particular way of dealing with the situation based on a number of factors (e.g., their personality style, life experiences and support systems, among others).

Clearly there are a range of stages and coping techniques, such as denial, depression, anger and rationalization. Most families recognize, at least at some level, that there is something significantly wrong with their "special needs" youngster. To at last be given a name for it (i.e., Asperger's or High-Functioning Autism) can be a relief.

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