Alicia is the Organizer of the Week for November 19 - 25, 2007

This week we head to the great state of Texas to visit with an Organizer who overcame her apprehension about starting her Meetup by realizing the need for support for parents of children affected by a form of autism, Asperger's Disorder. *(What distinguishes Asperger's Disorder from autism is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.) She saw a need in her community and answered the call. Her Meetup has brought together many parents of Aspies as well as children and adults affected with this disorder.

According to the a 2007 Centers for Disease Control report 1 in 150 children in America today have an autism spectrum disorder (ASD). ASA estimates that 1.5 million Americans and their families are now affected. Autism is a national health crisis. Because of her Meetup many people in the Austin TX area are not alone.

You will also find many helpful tips and ideas to make your own Meetup just as successful!

I am honored to present to you a true innovator with a giant heart - The Meetup Organizer of the Week for November 19 - 25, 2007, Alicia (aka Cricket) and The Austin Asperger's Syndrome Meetup.

Thanks, Alicia!

1. According to the Autism Society of America, Asperger's Disorder is not as easily diagnosed as Autism due to the developed language and motor skills present in children with Asperger's. When did you realize symptoms developing in your child?

   First let me say that my daughter has another disorder, selective mutism, **(Selective Mutism is a complex childhood anxiety disorder characterized by a child's inability to speak in select social settings, such as school. These children understand language and are able to talk normally in settings where they are comfortable, secure and relaxed.) as well as Asperger's, which may have contributed to an early diagnosis.

   At the age of four months my daughter would be inconsolable for hours if she was held by anyone other than me. Previous to that age, her father and grandparents could hold her and she would babble and squeal happily. I attributed it to early stranger anxiety, and while it lessened in intensity, it never went away.

   By the age of two, we joined a play group, and it took her a year of weekly meetings to venture out of my lap to explore, but she did not talk with other children. If another child approached her to say hello she would cry, and continue to cry for at least an hour. Transitions from home to the car (to anywhere!) would result in tantrums.

   There were also signs that she was incredibly gifted in the areas of language and memory. By the age of eighteen months she could tell you the names of seventeen dinosaurs, and she was reading by the age of four. She never had to be taught phonics, she just started reading whole words without struggling to sound them out. I have found this to be common in children with Asperger's, but it is not true in every case!

   While there may not be extreme motor delays in children with Asperger's, many of them do experience gross of fine motor delays. Many children are delayed in their ability to walk, run, skip or ride a bike. Writing, tying shoelaces, and other fine motor skills can also be a struggle.

   Asperger's is often accompanied by sensory integration disorder (DSI). It?s as if there is a traffic jam in the highway of the neurological system, and one cannot perceive and interpret sensory stimuli as others do. So for example, at a children's birthday party, the noise is too intense, the child's clothes feel too scratchy, the texture of the food is intolerable, the games are scary or difficult to do, the bright colors and light hurt their eyes. Almost every parent in my group mentions how difficult birthday parties are!

   And if your child is fearful to step off of a curb, climb down the stairs, swing, or slide at appropriate developmental ages, it could be a sign of sensory integration disorder. You will find extremes as well, that may be inconsistent. They may react negatively to one form of touch sometimes, but prefer it at others. Inconsistency in reaction is a hallmark of sensory integration disorder. Many of our kids love to swim; the water gives them the sensory information that their bodies need to feel calm.

   
   

2. For some, the diagnosis may come as a complete surprise; others may have had suspicions and tried for months or years to get an accurate diagnosis. In either case, a diagnosis brings a multitude of questions about how to proceed. What were your first steps after the diagnosis of your child?

   Almost every person in our group has had a difficult road to diagnosis, so that is a concern in itself, and makes the need for education and resources glaringly obvious. But to answer your question, my daughter was first diagnosed with sensory integration disorder at the age of three, so her first treatment was Occupational Therapy. I began a sensory diet with her at home.

   At the age of four, the anxiety of preschool was quite a struggle, and she wasn't speaking there at all, so I had her observed by a child development specialist, and the evaluator agreed that my daughter also had selective mutism. She made recommendations for treatment as well as suggesting preschools well suited to my daughter's needs. When my daughter's limited, obsessive approach to play continued at the age of five, I suspected Asperger's. While the neurologist felt she was too young for an official diagnosis, I pursued an evaluation again when she was seven. After extensive evaluation by the head of child development at UT, we received a diagnosis of selective mutism and Asperger's.

   We currently see a psychologist once a week privately, and through the school district my daughter receives social skills training. I am currently looking into treatments that will address a myriad of issues under one roof, from diet, to removal of mercury, to occupational therapy and psychological counseling. It's a complicated road, but with all of the media coverage regarding Autism and Asperger's, I would like to think that will improve. At our Meetups we have children diagnosed with Asperger's as young as the age of two, and I have people in their fifties and older who are just now suspecting they have it.

   
   

3. Before you started your Meetup, were you involved in any other Aspergers support groups? What was the impetus to start your own group?

   No, I was doing research on the internet about the various disorders I suspected my daughter might have. I found Meetup.com and noticed that about eighty people in our area were interested in a Meetup. Obviously there was a need! I hesitated for a few months about being a leader, as it's really not my strong suit, but I needed to speak to other people who had already made a decision I was trying to make. I needed support and reassurance during a time when I felt the decisions I was making for my child could have a huge impact on her for the rest of her life.

   
   

4. What methods do you use to get the word out about your Meetup?

   I followed the steps to form a Meetup group and the response was immediate, so I must say that I didn't do much else at first. I eventually posted on craigslist, informed the local school districts, and posted flyers at the University of Texas. There is so much more that I need to do, especially since many people with Asperger's are extremely hesitant to socialize. But I know many of the parents and adults feel so thankful that they took that leap. We have amazing, resourceful people in our group, so word of mouth and a team effort had helped me to deal with the growth. I am thrilled to see your video feature, and look forward to using it as a tool to reassure those who are hesitant to join us.

   
   

5. So far, what have been the most satisfying results or memorable moments coming from your involvement with your Meetup?

   Every time we meet, someone says to me, "I'm so glad I came, thank you." You can feel the relief and hope that they experience; it fills the room - as does the laughter and a sense of pride in being an Aspie.

   My most memorable moment was at the second meeting at a local bookstore. As a mother was speaking, she seemed familiar. I listened to her pain and struggle to help her teenage son who had Asperger's; the entire room was torn apart to learn that her son was currently homeless as a result of their difficulties. He was at the bookstore, but too uncomfortable to sit with us. Eventually, he sauntered over nervously, sat down briefly, and eventually wandered back to the aisles of the bookstore. Even though I hadn't seen him for years, I was certain that he was an art student of mine when he was in first grade. It was very hard to keep my composure as I could still see the young, vibrant artistic child that he used to be. He recognized me as well, and while I spoke with him I realized that he is even more vibrant and creative than he was then, but the path to diagnosis was such a long arduous struggle, that there were many obstacles for him to overcome in order for him function and share his gift with others. It remains for me one of the touchstone moments that demonstrates the need for education and resources for people with Asperger's.

   
   

6. What are the most challenging issues and greatest joys you've experienced raising your "Aspie"?

   Diagnosis was the biggest challenge. Once I understood my daughter's behavior, I was able to research ways to help her, and gain insight from members of the group. I can advocate for her and educate others when the situation requires it. My biggest challenge remains finding the best way to help her understand and express her emotions, and teach her how to get her needs met while considering other?s needs as well. My greatest joy is seeing her use her talents and courage to create happiness in her life. She is a truly gifted writer.

   
   

7. If you could let the world know the most misunderstood aspect of Asperger's Disorder, what would you say?

   To some extent, I would say the most misunderstood aspect of Asperger's is, in my opinion, that it isn't so much a "disorder", as a neurologically unique way of seeing and dealing with the world. People with Asperger's have strengths and areas of improvement, just as all humans do. Each Aspie is unique in the way they think and react to the world, thus the saying, "if you've seen one Aspie, you've seen one Aspie." We all have a different level of knowledge, perspective and insight into the illusive "handbook of social rules", and Aspies may behave in ways that seem logical to them, but are interpreted quite differently by neurotypical people.

   The touchstone for me is happiness of the individual as they function alone and in society: You can't be happy in life if you act as if the opinions of others are all that matter, but you must have the good will of some people in order to get what you want in life. Part of having the good will of others involves following social rules to a certain extent. Parents have a difficult role in deciding what social skills they want their child with Asperger's to master, while still retaining their uniqueness; teens and adults struggle with the issue every time they must interact with another individual. It's exhausting! But it seems to me that the more others learn about Asperger's, the more accepting they will be when it comes to embracing other people's differences. Just being human puts us on the continuum of differences, and that is one of many things that we all have in common.

   
   

8. Do you have any special events coming up for the holidays? Where do you see your group headed in the years to come?

   We have a meeting in early December, but no current plans to create a loud, social event; we try to keep it pretty low key. We end up laughing and having a rewarding time no matter what the season.

   I'm pretty certain we will eventually see the formation of a non-profit group from the meet ups. We currently have another website linked to our Meetup site that serves us locally: Aspies of Austin. We have outgrown our space, and are looking for a meeting place that will allow us to have separate rooms for the parent, child, teen and adult groups as well as our growing library. The people in this group are resourceful, supportive, intelligent and inspired, so I envision a very successful organization that will to educate and help families dealing with Asperger's. Thank you to Meetup.com for making it possible!

   
   For additional information:
   * Autism Society of America
   ** The Selective Mutism Group~Childhood Anxiety Network

   
   

   Wanna send Alicia your congratulations and encouragement? Do it in the Organizers' Forum.