Interview with the Parent of a Toddler with Autism
By: Community Services for Autistic Adults and Children (CSAAC)
The following interview was with a parent who has a child in the Intensive Early Intervention program. Names have been changed to protect the confidentiality of the individuals involved.
How did you first discover Cody was autistic? How old was he?
I began to suspect Cody was autistic at about 14 months. After what appeared to be a normal infancy, we began to recognize strikingly abnormal behavior. Cody was very quiet. He became increasingly withdrawn and lost normal eye contact. He failed to respond to loud noises and his own name.
How was he different from your other child who was not disabled?
Compared to our other child, Cody was silent. Our other child babbled constantly. She quickly discovered the power of words and gestures and made frequent demands. Cody demanded nothing. He did not respond when we spoke to him and most importantly, he did not understand simple words like dog, ball, mommy, or daddy.
When did you first learn about Intensive Early Intervention?
In December 1994, a friend mentioned the Catherine Maurice book, Let Me Hear Your Voice. I was skeptical, but purchased the book anyway out of curiosity.
Why did you decide to try this method?
From the moment I read about IEI in the Maurice book I felt it made intuitive sense. Also, there was published data that documented the success of this method.
Did you participate in the clinic or the workshop model of Intensive Early Intervention?
We initially had a workshop model and switched to a clinic model when it became available.
How old was Cody when you first began?
Cody was just under three when we began IEI. He's five years old now.
Do you remember what he was like your first day?
Yes! Enough said! Cody tantrumed like a champ. Although it was distressing, I had expected him to have this reaction. This behavior quickly faded away during his first week of therapy. He began to make rapid gains in his programs, particularly receptive language. For us, the fact that IEI was a very powerful therapy method became quickly apparent.
How intrusive is this method on your time and family?
The method itself is intrusive because you constantly have therapists in your home and in and out of therapy we are addressing problem areas. But having a child with autism is much more intrusive than any therapy. Prior to IEI, I felt constant pressure to keep Cody engaged in some productive activity rather than having him constantly "stimming". Now when he has therapy, his time is productive, he is learning, and usually having fun. While he is getting therapy, I actually get a break from feeling the need to do everything myself. Yet, I am intimately involved in all aspects of Cody's therapy. Cody's older sister has adapted well to our unusual situation. In fact, to her, our lives don't seem unusual. We have a pretty happy home.
How does the "inclusion" aspect of Early Intervention work?
Cody goes to a typical preschool with his own aide. The idea is for Cody to learn, through normal models, age appropriate speech, language and behavior. At this time, Cody has become a true part of the class. He participates in all the class activities, plays with the other children, and is developing appropriate reciprocal interactions with his peers.
Was Cody accepted by parents of other children in the classroom?
Cody was readily accepted by the other parents.
Did the teacher in Cody's class accept the shadow?
The teachers do accept the shadow. At times they are very grateful to have another adult in the room. There is an initial adjustment period where the teacher and aide need to establish their own relationship and develop an understanding of the shadow's role in helping your child.
Are there any negatives about this method that families need to consider before choosing this approach?
No. There are negatives but to me not doing this therapy would be much more difficult. Once your child is diagnosed with autism your life is dramatically changed. This is true regardless of the treatment you choose. Any inconveniences associated with IEI pales in comparison to the progress that Cody is making.
Tell us about some areas where Cody has made gains.
Cody has made great progress, especially in his major area of deficit, language. His current use of spontaneous language is particularly gratifying. In the past articulation was a significant problem. Now much of what he says is understood by other children and adults. At this point, Cody is blending in with typical children and the need to prompt reciprocal conversation is decreasing. Cody even has a best friend at his preschool.
Tell us about anything that continues to concern you about Cody.
We still have a way to go before Cody's expressive language sounds the same as a typical five year old. We are continuing to work on syntax and gaps in his receptive and expressive language. Additionally, maintaining eye contact continues to be problematic.
What are your expectations for Cody?
I can't say that I expect Cody to be "normal" in the future, I don't know for certain that he will be. I do, however, have reason to be optimistic about my son's future. I know that Cody has an effective means of communicating. I know that he enjoys the company of his family and other children, and I have seen other children seek Cody's companionship.