Vol. 8, Spring 2005

An Autism Spectrum Disorder Experience

 

by Kim Shine, Parent &
Martie Kendrick, Research Associate

 

Following is a conversation between a mother of a young child with Asperger's Syndrome, one of the autism spectrum disorders (ASD), and the early childhood specialist who provided technical assistance to his early childhood providers.

 

Martie: Kim, tell me a little bit about Ian when he was a baby.

 

Kim: My beautiful baby boy was born on November 22, 1998. He was induced a week early and had to stay in the hospital a few extra days because of a case of jaundice, but he was perfect just the same. Ian was my first; I had very limited exposure to infants and children so I read all the books and watched him carefully to make sure he reached the milestones he should. The first thing I noticed about Ian was his curiosity. He was constantly looking at everything around him. He wore a bald spot on the back of his head from turning it back and forth so much in his crib, car seat, stroller, and swing. And he was so quiet! We could take him anywhere and he never had crying episodes.

 

We spent quite a lot of time with him playing on the floor and as he grew, we noticed he liked to play by himself more and more, which was great for me. I could get housework done or read a book. I thought this must be pretty normal. Ian was reaching all the milestones: sitting, crawling, hand control. He walked when he was 13 months; he actually talked when he was 10 months. He said “itty,” pointing to the family cat.

 

Martie: When did you first have concerns about Ian?

 

Kim: When he was about 18 months old, we transferred Ian from a small family childcare home to a larger childcare center. Off and on through the first six months, the director would approach me and ask about Ian’s social behavior: “How does he act around other kids?” Well, I couldn’t really answer the question because I never saw him around other kids. He was great around us; he talked and played when he felt like it, and played with his toys by himself when he didn’t. He was great around the adults at our church, very talkative; he enjoyed sharing his knowledge of dinosaurs and other animals. I thought that perhaps the reason he wasn’t playing directly with the other kids was because he had come from such a small setting into this large one and was having trouble adjusting to the dynamic.

So, I put the director off. She gave us some paperwork to have Ian assessed by Child Development Services Center agency in our area. I took it home and talked to my husband about it. We decided that obviously they were over-reacting and he was fine. The paperwork got buried on the kitchen counter somewhere. Whenever she asked me about it I would say that we were still talking about it, and then I’d let it go. “He’s fine”, we kept telling ourselves, but the center director kept at us.

Finally, more out of a desire to prove nothing was wrong than any acceptance on our part that something might be, we agreed to have Ian assessed and filled out the paperwork.

A worker came out and observed Ian at the daycare. She then wrote a report stating her opinion that Ian had Asperger’s Syndrome. "Obviously," I thought, "she must have been observing a different kid or misinterpreting Ian’s behavior." The things she talked about—Ian walking around on all fours, flapping his hands, and waving sticks in the air—were just part of his role play. He likes to pretend to be characters like Littlefoot or Mothra.

We asked her to come out and watch him at home, so she could see Ian the way we see him. When she was there, she reported him butting his head on the bathroom door and licking things. Well, he was being Rudolph the Red Nosed Reindeer, trying to open the door with his antlers and a snake going around, smelling things with his tongue. She just wasn’t getting it. She recommended a psychiatric evaluation. By now we were so upset with these people for persecuting our kid we said, “Sure!” just to prove THEM wrong.

Caption: Ian carries his own personal picture schedule on a key chain, so that he can remain focused on his own daily routine.

Martie: It sounds like this was a very confusing and frustrating time for you and your husband. How were you able to move forward with this?

Kim: I love my son just exactly the way he is. If Ian never had to deal with other members of the human race, I would never subject him to the special education maze, at all. But he does have to deal with people and I didn’t have the knowledge and skills to help him adapt to the system. So, in the course of a year, I had to become an Asperger’s expert/therapist, Early Intervention service coordinator, and children’s rights advocate, all while raising a typically developing two year old and holding down a full time job. I read everything I could find on Asperger’s Syndrome, including Tony Attwood.

(Editor's note: Dr. Tony Attwood is a noted British author of several books and DVD’s on the subject of Asperger's Syndrome. See Resource List below.)

Some of the characteristics of AS were definitely characteristics of Ian’s, but some were not. After the psychiatrist did the evaluation, we talked about it and started to think that maybe—just maybe—Ian may be SLIGHTLY affected with this disorder, but certainly not to any great extent. The psychiatrist recommended occupational and speech evaluations so we had those done, as well. This is when I hit my own personal wall. I realized, after reading the speech evaluation report, that my perfect little guy really did need some help. I read about a bunch of kids on the playground climbing into a big plastic boat and hollering for Ian to join them. He did, but he sat way at the back, away from the group, with his back to them. This just about broke my heart. This was the point at which I began to acknowledge the diagnosis, but I wasn’t going to buy the whole package. We parents are dragged kicking and screaming into this bizarre system of alphabet soup rivaling that of the United States military with IFSP, IEP, OT, DT, PT, and ST…

Martie: It sounds like you had some reservation about treatment for Ian. What was of most concern to you?

Kim: The last thing I wanted anyone to do was tell my little guy there was something wrong with him and that he needed to be fixed! I didn’t want them changing him, because Ian is wonderful just the way he is! He is kind, and loving, and funny, and brilliant! He tells the most amazing stories sometimes. I just love talking to him. I don’t want either of us to lose that.

Martie: Understandable! But I know you did move forward with acquiring services for Ian. How did that transpire?

Kim: Yes, Ian had occupational therapy (OT), speech and psychological evaluations. The Early Childhood Team (ECT) determined that he should receive OT, Speech, and Developmental Therapy (DT) in both special purpose and childcare settings. Since these were in four different places, it involved a lot of transitions and running around for Ian (and us). Communication across settings was also really challenging. It is so important for all of the therapists to be interacting and sharing information, but the logistics for making this happen with distance and time complications were very frustrating.

Martie: Yes, it does sound frustrating—and exhausting. So, were you able to resolve this?

Kim: Yes, at first, I made a lot of phone calls trying to share information with everyone but eventually we instituted a sharing notebook that traveled around in Ian’s backpack to all of his therapists. We (my husband and I) would write in it and the therapists would write in it. Everyone had the opportunity to contribute across settings.

Martie: Yes, I remember when you and I worked on that. It took a while for folks to get in the habit of using it. We put a list of possible topics in the front of it so Ian’s childcare-DT providers would know relevant topics for comments.

Kim: Yes, you and I worked with the childcare-DT site on a number of other issues too. One of the major concerns was that there was little in the way of documentation of Ian’s progress in the childcare-DT setting. The special purpose program had a very extensive, on-going assessment system in place for him, but the childcare-DT site was not equipped to monitor his progress very well.

Martie: I worked with them on that. Sometimes the goals and objectives that are developed for a child are not very user-friendly for a childcare setting. We embedded the objectives into the typical routines and activities of the day. This made it easier for the provider to work on specific objectives. Then we developed a simple system for assessing, tracking, and documenting progress. The program director was pleased with the results and asked if she could adapt it for use with other children!

Kim: Yes, I felt much more confident that Ian’s Individual Family Service Plan (IFSP) was being implemented after this process was implemented.

Then we had to deal with the “behaviors!” Ian was disruptive at circle time and had problems during the many daily transitions. The teachers were really frustrated.

Martie: I remember. You and I talked about using a “squishy” sensory toy for him to hold onto during circle time. You chose a squishy dinosaur because Ian is the foremost, 4-year-old expert on everything dinosaurs. He had to keep the dinosaur in his cubby except during circle time and you pre- and post-taught him how and when to use it.

Kim: Yes, and it worked like a charm! He was able to sit in circle most days without incident and he can do that now without a squishy toy.

Martie: The transitions were a little trickier. We created a picture schedule for the classroom, which was introduced and reviewed periodically with all the children. A smaller version of the picture schedule was laminated and put on a key chain, which Ian could wear on his belt loop or put in his pocket. The visual cue provided by the pictures helped him to organize. Other supports worked in this regard too; such as giving him a two-minute warning, using a timer, or using music/light flickers to indicate a transition. After a concerted effort by many people, Ian was very successful in his childcare program.

When you think about the future, what do you dream for Ian?

Kim: He wants to be a marine biologist when he grows up. With his ability to store and recall data about practically every dinosaur ever dug up and most of the larger creatures living in the ocean; and his ability to take that data, make hypotheses, and postulate theories based on it, I can’t imagine ANYONE more suited to undertake that career path!

What I would love to see for Ian, in an ideal and rosy future, is a succession of teachers that look past the diagnosis and see the person. I want them to take the time to get to know that Ian can count to 30, if he is counting dinosaurs. If they want him to write a 15-page, single-spaced report, the topic should be about Environmental Protection or Liopleuradons.

What I mean is, I want his teachers to give Ian his own space to shine. Because he can; he does! If he is given the proper set of circumstances, that boy can stand side-by-side with any other child in the academic arena. Why should he be denied that? How do I make sure he isn’t? This is the anxiety I bring with me as we enter the public school system as a family living with Asperger’s Syndrome.

Resources:

The following is a list of resources Kim has found useful in her research on Asperger's Syndrome:

Morgan, R. (2005). Welcome to Tony Attwood’s web site. Retrieved April 11, 2005 from http://www.tonyattwood.com.au/

Gray, C. (2003). Social Stories. Retrieved April 11, 2005 from The Gray Center for Social Learning and Understanding: http://www.thegraycenter.org/socialstories.cfm

Asperger’s Community Board. (n.d.). Retrieved April 11, 2005 from http://www.xmission.com/~winter/CGIBiN/ultimatebb.cgi

Kirby, B. & Romanowski Bashe, P. (2005). Online Asperger Syndrome Information & Support: O.A.S.I.S. Retrieved April 11, 2005 from http://www.udel.edu/bkirby/asperger/

Autism Society of Maine. (n.d.). Retrieved April 11, 2005 from http://www.asmonline.org/

ShadowSyndromeKids. (1999). Mild Forms of AS, ADHD, SID, CAPD, ODD, OCD. Retrieved April 11, 2005 from http://health.groups.yahoo.com/group/ShadowSyndromeKids/