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."

Click here for the answer...

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.

Click here for the full article...

High-Functioning Autism and Sibling Issues

"Any tips for helping my 'typical' kids to understand their older brother (high functioning autistic)?"

Almost more than spouses, brothers and sisters are thrown together for better or for worse. When a sibling has an autism spectrum disorder, it can complicate that relationship because one youngster lacks social skills and another just can’t figure out “why my brother acts that way.”

Tips for Parents—

1. Don’t accept bad behavior from your HFA youngster, and don’t expect perfection from your other kids. That can lead to resentment and acting-out.

2. Fully educate yourself about your HFA youngster, and then inform his siblings on an age-appropriate basis. Know that kids on the autism spectrum find it very difficult to pick up on social cues and often have intense, narrow interests. Even a young sibling can understand that, “Jacob gets upset when we stop talking about trains, but we’re working on ways to make that better.”

3. Realize just as you may mourn the loss of a more mainstream youngster, his siblings may also be sad they don’t have the kind of sibling relationship that other siblings enjoy. Let them talk about those feelings.

4. Seek support groups. Mom and dads in those organizations likely have other kids, too, and they can be a valuable resource for the siblings of your HFA youngster.

5. Set aside quality time alone with each youngster. This may sound difficult, but one way to accomplish that is to take one youngster at a time on an errand or personal appointment when you can. You’ll have valuable “car time” with the youngster in tow.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism

6. Understand that HFA is an “invisible” disorder. Siblings may be embarrassed in front of their friends or at the mall when their brother (who looks no different than any other kid) can’t stop his weird mannerisms (e.g., clenching and un-clenching his fists).

Warnings—

• All siblings fight.
• Never compare your HFA child to his siblings. It will create feelings of unworthiness about himself and anger toward the siblings.
• Your "special needs" youngster will learn crucial social skills in interactions with siblings. Seize upon teaching moments.

Letter from a parent regarding siblings of HFA children:

It has been two years since my oldest son was diagnosed with high functioning autism, and while we have all come a long way since that day, it has become obvious to us that our younger son (there is only a year between the two) has had to go down a much longer road to get to the point where he can understand his brother.

When we first discussed the difficulties our older child faced, our younger son didn't want to hear them. He didn't want to know that there was something different about his brother. He cried for many nights after, grieving the loss of his idea of what an older brother should be like. He became so depressed and upset over the diagnosis that I took him to see the psychiatrist who had diagnosed my older son. She reassured him that all his feelings were normal, it was okay to feel stressed by this development and suggested ways in which he could deal with his feelings.

After the grieving stage came the anger. This was a very difficult stage for us to deal with. He wouldn't even look at his brother except to glare at him from time to time. He wouldn't speak to his brother unless he had to, and when he did, he spoke in a really rude tone of voice. There were many times when we had to step in and "have a talk" with him about his attitude. Finally, when we pointed out that his behavior wasn't helping the situation at home and that we needed him to be more accepting of his brother, he settled down.

His first steps into trying to understand autism came in the form of questions. He would ask why his brother behaved a certain way, or did a certain thing and we would answer as best as we could. Then he started to make statements like "My brother does that because he hates change". As situations arose, we explained them to our son and he developed an understanding of the disorder. When the kids at school asked him why his older brother was a "freak", he wouldn't say a word. At the end of the day he would tell us these stories and we would make suggestions about how to deal with these situations. While this issue of the other kids calling his brother names still makes him very uncomfortable, he no longer responds by taking out his anger on the family.

Over the past year we have made a point of teaching our younger son about the communication difficulties his brother has. With the literal interpretation of words being the cause of many disagreements between them, my younger son can often stop an escalating fight by using humor or word play to diffuse the situation. Two years ago this would have been impossible.

Don't misunderstand me, it has not been easy to explain the intricacies of autism to a 10 year old sibling but I am glad now that we did. The boys get along much better than they have for several years and the younger one is providing much needed support and understanding for the older one.




==> Click here for more information on sibling issues and the autistic child...

Resources for parents of children and teens on the autism spectrum:
 

==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder

==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook

==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book

==> Crucial Research-Based Parenting Strategies for Children and Teens with High-Functioning Autism

==> Videos for Parents of Children and Teens with ASD

 

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Resources for Neurodiverse Couples:

==> Online Group Therapy for Men with ASD

==> Online Group Therapy for NT Wives

==> Living with ASD: eBook and Audio Instruction for Neurodiverse Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by ASD

==> Online Group Therapy for Couples Affected by Autism Spectrum Disorder

 ==> Cassandra Syndrome Recovery for NT Wives

==> ASD Men's MasterClass: Social-Skills Training and Emotional-Literacy Development

==> Pressed for time? Watch these "less-than-one-minute" videos for on the go.

____________________

COMMENTS:

•    Anonymous said... My 12 year old son has a very hard time dealing with and understanding his 9 year old sister who has autism. He too feels embarrassed by her. He avoids being around her if he can. This article was helpful. It is hard for me because she could learn so much from him, but he is not willing to give her the time.

•    Anonymous said... Holly Robinson Peete has two children, one on the spectrum. Her other child wrote a book about it. I have not personally read it, but have heard good things about it from others who have.

•    Anonymous said... Really great article with very interesting information. You might want to follow up to this topic!?! 2011

•    Anonymous said… Thank you for this post. I have an almost 13 yr old aspie and an almost 11 year old son with bipolar. I never know how much to tell one boy about the other thank you for this post. I have an almost 13 yr old aspie and an almost 11 year old son with bipolar. I never know how much to tell one boy about the other.

 

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Asperger's Syndrome: Different Pathways to Diagnosis

There are several different pathways to the diagnosis of Aspergers. Some kids receive the diagnosis fairly early in life, while some individuals are not diagnosed until well into adulthood. In some cases, kids are inaccurately diagnosed with another disorder, (e.g., a language disorder, depression, schizoid personality), and are only later correctly diagnosed with Aspergers. Some kids are considered autistic early in life, but progress well enough to ultimately be diagnosed with Aspergers.

The impact of the diagnosis of Aspergers on a family is no doubt partly related to the manner in which the individual was diagnosed. Families who recognize early on that there is something seriously wrong with their youngster and are given a diagnosis of autism spectrum disorder (and only later learn their youngster has Aspergers) will experience many of the reactions families with autistic kids have. These reactions are described below. Many families, whose kids progress far enough to no longer warrant an autism diagnosis, experience considerable relief and pride in their and their kid’s accomplishments. At the same time, they still struggle with complex feelings related to their youngster's Aspergers diagnosis. If the diagnosis is made in a parent or other relative when a youngster in the family receives the diagnosis, a different constellation of feelings is often set into motion. In these families, the adult must grapple not only with the diagnosis of a disability in the youngster, but with coming to terms with his own disability as well.

Because many kids with Aspergers were originally felt to have an autism diagnosis, the following remarks address the social and emotional issues for the families of kids diagnosed with an autism spectrum disorder (ASD). These remarks generally refer to adult family members, primarily moms & dads and sometimes grandmoms & dads:

It is hard to overestimate the impact the diagnosis of ASD has on a family. For many moms & dads, this pain is so searing that even years later, the memory automatically causes tears. All moms & dads wish for healthy kids and this diagnosis shatters that hope irrevocably; never mind the fantasy of "perfect" kids, it shatters the premise that one has a normal youngster.

There is generally a kind of anxiety surrounding the birth of a baby that the youngster be healthy and many of these kids early on seemed to be fine. To learn that one does not have the normal little girl or boy one thought one had is an especially painful blow.

Compounding the impact of the diagnosis of ASD is the fact that it, unlike some other handicaps, affects multiple and diverse aspects of functioning. There may be impairments of cognition, motor skills, language, behavior, and certainly social and emotional interaction. ASD affects the way in which kids respond to and relate to their moms & dads. This is most dramatic in those autistic kids who act as if people do not exist. There is nothing more chilling than the gaze of a youngster who appears not to see. Such difficulties tend to make moms & dads feel helpless and as if they don’t matter. Most families become preoccupied with ASD and see it as the central feature of their lives. According to one father, "There isn't an hour that goes by that I don't think about it." Another parent said, "Will I ever be happy again?"