A.M WEST VIRGINIA LIVE

EPISODE #76

TAPED AND AIRED: MONDAY, OCTOBER 28, 2002

SPECIAL TOPIC: AUTISM AWARENESS

TOPIC OF THE DAY: GENERAL FACTS ABOUT AUTISM AND AGGRESSIVE BEHAVIORS

HOST: Kate O’Malley

GUEST (1st segment): Dr. Paul Gibson—a psychiatrist at St. Andrews Hospital

GUESTS (2nd segment): Jim and Mary Tinsley, their son Kyle, Kyle’s Speech-Language Pathologist, Heather Leonhart

GUESTS (3rd segment): Dr. Paul Gibson, Dr. Joe Williams—a neurologist at the Tri-State Area Medical Center, Marilyn Boyle—director of the Autism Outreach Program, and Stacey Taylor—director of all Autism Outreach community programs and group home programs here in the area.

Preface: This interview was taped on October 28, 2002 as part of a week-long segment on autism awareness. During the week, many parents of children with autism will be guests on the show, along with professionals who work with autistic individuals. Also, individuals with autism will be guests.

KATE: Good morning West Virginia and thanks for tuning in to A.M. West Virginia Live. I am your host, Kate O’Malley. This week here on A.M WV, we will be talking about autism and the autism spectrum disorders. Throughout the week, we will be discussing autism in general, aggressive behaviors associated with autism, language deficits in autistic individuals, treatments for autism, and Asperger’s Syndrome. We will be speaking with individuals with autism, their families, and those who work with them. Today, we will be talking about autism in general and aggressive behaviors associated with the disorder. We will be speaking with a family who has a son with autism and we will be speaking with the Speech-Language Pathologist who works one-on-one with their son. Before we begin though, I want to introduce everyone to Dr. Paul Gibson, a psychiatrist at St. Andrews Hospital. Good morning Dr. Gibson!

DR. GIBSON: Good morning Kate!

KATE : I know you’ll be joining us later in the show, but I wanted to bring you out now so that you could talk a little about Autism in general.

DR. GIBSON: Well Kate, autism affects about two to six individuals in 1,000 people and it is a developmental disability that affects the way one communicates and relates to others. It is one of five disorders that falls under the umbrella term of Pervasive Developmental Disorders (PDD). It is identified more in boys than in girls and is usually identified in children between the ages of one and three. Autistic individuals often rigidly adhere to routines, become obsessed with certain subjects or toys, and they overreact to stimuli. Some may even engage in repetitive movements such as head banging and arm flapping. Many autistic individuals display aggressive behaviors, such as hitting others, pulling others’ hair, and biting, just to name a few (Autism Society of America, 2002).

KATE: I see. Well I’m certainly eager to learn more about autism. Thank you so much for sharing and we’ll talk to you a little later about more specific topics regarding autism. Today, we will be discussing aggressive behaviors with a family from the Huntington area. Also, we will be speaking with the very first professionals who deal with individuals with autism, a Speech-Language Pathologist, a psychiatrist, Dr. Gibson, and a neurologist. Right now, we are going to take a short break. When we come back, we will be talking with our first guests Jim and Mary Tinsley and their son Kyle from Huntington, WV. Also joining us will be Kyle’s Speech-Language Pathologist, Heather Leonhart who works for Cabell County Schools. We’ll be right back.

(COMMERCIAL BREAK)

KATE: We’re back and joining us is Jim, Mary and Kyle Tinsley, and Heather Leonhart, a Speech-Language Pathologist in the Cabell County Schools. Welcome and thank you for joining us this morning!

JIM: Thanks for having us.

KATE: So I want to start off by asking when it was that you discovered that Kyle was autistic.

MARY: Kyle was around two and a half when we first realized that something was wrong. Up until that point, Kyle seemed to be developing language and speech like a normal child. Then, he just stopped talking and wouldn’t look at anyone in the face. Even when called upon, he just seemed to ignore us (Autism Society of America, 2002).

JIM: Yeah, and he wouldn’t answer us when we asked him questions. He never talked and at one point we thought that he had a hearing loss. So, we had his hearing checked and everything turned out normal. So, then, we thought he had a language problem. That’s when we went to see Heather.

KATE: So, did Kyle gradually stop talking, or did he suddenly stop.

MARY: To be quite honest, I can’t remember. It seems like it was overnight but now that I look back, I remember little things about Kyle that were “red flag” types of things even before he stopped communicating.

KATE: Such as?

MARY: Like in most of Kyle’s baby pictures, he isn’t at all looking at the camera. It’s eerie to go back and look at them now. It’s things like that that you wouldn’t think about unless you knew that your child was autistic.

KATE: I see, so you went to see Heather. Heather, what did you think when you first saw Kyle?

HEATHER: Well, I work with many autistic individuals, so I was, and still am, quite accustomed to noticing when a child exhibits communication and behaviors like that of an autistic child. When I first saw Kyle, he was playing by himself and was totally oblivious to anyone else’s presence in the room. He didn’t talk at all, which was another red flag and he didn’t interact with other people, not even Jim and Mary.

KATE: Did you have an idea that Kyle was autistic?

HEATHER: Yes I did. But of course, I could not say that because I would be “diagnosing” Kyle and that is not within my scope of practice. So, I did a series of tests on Kyle that assessed his communication. When I obtained the results, I knew that I had to refer him to a psychiatrist. Everything about his communication just seemed to scream autistic.

JIM: We were somewhat alarmed when Heather referred us to a psychiatrist for additional testing. We would have never guessed that Kyle was autistic. It’s just one of those things that you never want to happen to you or your child.

MARY: I was an emotional wreck. After Kyle’s diagnosis, I don’t think I ate or slept for a month.

KATE: I couldn’t imagine what you must have felt like. So, what did you do after you found out that Kyle was autistic?

JIM: We got some really good information from Kyle’s psychiatrist. We contacted the Autism Outreach Program here in Huntington that provides respite type services to families of autistic individuals. We were also referred back to Heather for speech and language therapy.

KATE: So, now I want to talk about Kyle’s aggressiveness because that’s what today’s show is focusing on. When did Kyle really begin to display aggressive behaviors?

MARY: He became aggressive probably around three years of age. He screamed excessively and when he didn’t feel good or couldn’t communicate his wants and/or needs, he tried to hit us, kick us, pull our hair, or he used these strange vocalizations (Schopler, 1995).

KATE: What kind of strange vocalizations?

MARY: Well, he would scream in a very high pitched voice and then he would just start making this high pitched screeching sound. It was very hard on the ears.

KATE: Apparently his vocalizations aren’t the only things that are hard on you and Jim. You were gracious enough to let me read some journal entries that you have written in your personal journal. I must say, when I read some of the entries, I was overcome by such an enormous amount of sympathy. You all have really been through some tough times. May I share one that I found particularly interesting?

MARY: Sure, go right ahead.

(Kate reads the entry)

KATE: Wow! I can’t imagine what you go through.

MARY: You know, it’s just like anything else; some days are good and some days are bad. But for the most part, we feel that Discrete Trial Training or DTT has really helped Kyle.

KATE: How did you guys handle his aggressions in the beginning?

MARY: When telling him no and time-out wasn’t working, we went back to his psychiatrist. He prescribed Antipsychotics like Risperdal (Tierney, 2002) for Kyle.

KATE: How did he respond to them?

MARY: He was very lethargic and he gained a lot of weight. Jim and I were not happy with the side effects (Tierney, 2002). When it was time for his medications, you knew it because he would become very aggressive. More so than ever before. He was very tired all of the time. That added to his frustrations and aggressiveness as well. He was on medications for about a year, and then around his fourth birthday, we decided to try something else. That’s when we discovered Discrete Trial Training or DTT.

KATE: I want to talk with you about DTT but first, let me talk with Heather about her experiences with Kyle and his aggressive behaviors. What have you experienced in therapy?

HEATHER: Well, I work with many autistic individuals on their speech and language and I must say, that it is absolutely necessary to combat aggressive behaviors in the therapy setting right off the bat. It’s hard to try and do therapy when you have a client who isn’t getting anything accomplished simply because they are trying to hit you, kick you, pull your hair, or scream all of the time (Schopler, 1995). That is why it is necessary that I manage Kyle’s aggressive behaviors in therapy. Everything that Mary has said about Kyle’s earlier behaviors is true. In therapy, he was too tired to work on anything because of the medication that he was on. Because of his fatigue level, he stayed frustrated. After he was on medications for about two months, I saw how lethargic they made him and so I cut his therapy time down to a half hour instead of 45 minutes. 45 minutes was just too long and the longer he did therapy, the more he got upset. The therapy sessions were just not productive.

KATE: How did he react?

HEATHER: He would begin by vocalizing and then he would try to hit me and pull my ponytail. I never wore my hair down with Kyle because I knew he would eventually try to pull it all out. Later, he began throwing objects around the room, like toys and picture cards that I used with him in therapy.

KATE: That must have been hard trying to control him. What did you do?

HEATHER: Many times I ignored his vocalizations and I tried to move all materials and objects out of his way so that he would have nothing to throw. Also, I got out of his way so that he couldn’t touch me. Eventually, he tired himself out (Wallin, 2002).

KATE: How long did that go on?

HEATHER: Not long. I realized that Kyle needed a way to effectively communicate with others and that was why he probably got so frustrated all of the time (Schopler, 1995). I began attending workshops for augmentative communication devices and I found one that was ideal for Kyle. I began teaching him how to use it in therapy. I also began teaching him sign language. After about a month of learning how to use his communication board and his most important signs, I saw a dramatic improvement in his behavior and after he stopped taking medications, even more of an improvement was evident because he wasn’t as tired all of the time.

KATE: This may sound like a stupid question, but it’s something I’m unclear on and I probably should have asked you at the beginning of the show. Why are SLP’s some of the primary professionals that work with autistic individuals?

HEATHER: That’s not a stupid question at all, Kate. We work with autistic individuals basically because they lack the skills to participate in normal social interactions and they have difficulties with the pragmatics of language or in other words, the use of language. Many clients are unable to convey their wants and needs effectively, like Kyle. Some autistic individuals may even be nonverbal. Therefore, Speech-Language Pathologists can work with the child’s parents to develop communication systems such as picture cards, augmentative communication devices like Kyle’s, and sign language to help these clients to communicate. There are many different approaches to helping autistic individuals learn how to better communicate with others, but I would need a entire show all to myself in order to talk about all of them!

MARY: I think that’s one of the most important aspects of helping autistic individuals is communication. It was so exciting to see Kyle learning how to communicate. He was actually able to tell me things and convey his wants and needs. I didn’t have to guess anymore. We then began DTT after we had heard so many good things about it from a family in Charleston, West Virginia. They use it with their son and they say his cognitive skills and his language skills have drastically improved. They also say that his behaviors have decreased as well. We just began DTT last spring and so far, we like it.

KATE: Quickly, what is DTT and what is it used for?

MARY: Discrete Trial Training or DTT is a technique used to teach individuals with autism. The teacher presents the child with a stimulus item, waits for a correct response, and reinforces the child each time he or she presents the teacher with a correct response. If an incorrect response is given, then the teacher repeats the questions or presents the stimuli again. If a correct response is given, the teacher reinforces; however, if an incorrect response is given again, the teacher uses structured prompting which results in giving the correct answer and then asking for it again later in the trial (Wallin, 2002). It’s really good for teaching individuals with autism new skills and it has been known to minimize problem behaviors.

KATE: Heather, I understand that you are involved in Kyle’s DTT program. What can you tell me about it?

HEATHER: When I work with Kyle, I do DTT drills or tasks that relate to speech and language. Many of these drills are done at a designated desk in the therapy room and many people familiar with DTT would say that what is learned at the desk is not carried over into other contexts (MO-Feat, 2001). However, I would have to disagree. I see Kyle using information that he has learned at home during DTT drills and I have to say that it has been my experience that DTT can teach functional language. When it all comes down to it, I guess it all depends to what extent DTT is being used and how it is being used. It also probably depends on the child and how well they are able to conceptualize the things they learn in DTT drills.

KATE: I remember you telling me about the newsletter that you publish monthly called “Autism Express” and that you just did a special edition on the experiences that different SLP’s have in managing the aggressive behaviors of autistic clients.

HEATHER: Yes, as a matter of fact, I brought a copy to give to you.

KATE: Thank you (looks over the newsletter). Oh, this is interesting. Can I read one of the responses? So, these are all people who subscribe to your newsletter who just wrote you with their experiences?

HEATHER: Yes. My staff and I chose the ones that were most common to see in our field.

KATE: I’m going to read the one that you posted in the newsletter about Kyle. Is that okay?

HEATHER: Yes, absolutely!

(Kate reads a portion of the newsletter)

KATE: It seems like you have had success with Kyle’s program.

HEATHER: Yes. I have seen such a tremendous improvement in Kyle. I can’t emphasize that enough. That was also my reasoning behind telling my story. I want other SLP’s to have an open mind when it comes to the DTT technique and not to be so quick to judge it and discredit it as an effective teaching method.

MARY: At home, he’s made such a significant improvement. He communicates with us by using his communication board and by using sign language. He rarely gets upset, mostly only when he is ill. At school, he has become upset with the other children and that is only because they are unfamiliar with his signs that he uses. Now, thanks to Heather, the children are more familiar with the signs he uses.

KATE: How did you get the children to understand his signs?

HEATHER: I go to Kyle’s classroom twice a week for about 30 minutes a day and teach his classmates sign language. This was something Kyle’s teachers and I implemented after Kyle bit a little boy because he didn’t understand something that Kyle was trying to sign to him. That wasn’t the first time that that had happened, so we thought it was about time we did something to nip the aggression in the bud. It was also easy to implement. All I did was talk to Kyle’s teachers, we sent home permission slips for the other parents to sign, and I e-mailed Mary with the news.

KATE: Wow! What a great idea!

JIM: I agree. Kyle has really improved his behavior and since the implementation of the sign class, he hasn’t been aggressive toward any of his classmates. His classmates love it and their parents are very supportive. It has been truly wonderful.

KATE: Well congratulations. It must give you so much more hope for the future.

MARY: Thanks Kate. It really does.

KATE: Before we go, I understand that Kyle has composed a poem on his communication board.

HEATHER: Yes he has. When he did this in his classroom, his teachers came busting into my office crying. They were saying, “You have to read this! You have to read this!” I had no idea what was going on. When I read it, I just cried. It’s sad to admit, but I had no idea that Kyle was capable of composing a poem. I called Mary and Jim, who were both at work at the time, and told them to come to school immediately. I explained to them that nothing was wrong, but that something was definitely right.

KATE: Were you guys scared?

MARY: Not really. She assured us that nothing was wrong, but we were excited to see what had happened. When we read the poem, we both just cried. I think we all cried together and then just hugged everyone like, twenty times or something. I think we went home that day and called everyone we knew and read them the poem. We were astonished and so very happy.

KATE: I bet. Will you share the poem with us? Or better yet, can Kyle use his communication board to read it to us?

MARY: Absolutely.

(Mary and Heather set up the communication board)

HEATHER: Kyle, it’s time to read your poem. Let’s use your communication board so that we can read your poem. Here’s your paper. Read please.

(Kyle gets in front of the communication board and begins to read his poem)

KATE: (tears streaming down her face) Wow! That was so powerful. Kyle, that was such a great poem. You did such a nice job and all by yourself! Thank you very much for sharing it. Thank you all so much for being here today and sharing your experiences with us. May you have the best of luck with everything. When we come back, we will talk with Dr. Paul Gibson, who we brought out at the beginning of the show and to Dr. Joe Williams, a neurologist at the Tri-State Area Medical Center about some general characteristics associated with autism. Stay tuned!

Back to Genre 5: Newsletter

Proceed to Genre 7(Unifying Genre): Powerpoint Presenation (Interview)

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