Parent's perspective on diagnosis, Autism Spectrum Disorders and early signs of Autism and Asperger's syndrome


The way we think about a problem determines how we will approach and deal with it. For example, one day Jesus told his disciples that rich people (whom the disciples assumed were blessed by God) would have a very difficult time getting into Heaven because of their love for wealth. The disciples could not understand how anyone would overcome this problem and get to Heaven. Jesus said to them, "With men this is impossible; but with God all things are possible." Jesus changed their outlook with one sentence.


A more-local example: For most of us, a flat tire would not be a trip-ending problem. We know we have a jack, a spare tire, and the ability to change a tire or at least can get someone else to change it. However, if we have never experienced anything like a flat tire, or have no idea how to change a tire, or do not have the jack or spare tire, or if we have no idea what is wrong with the car, . . . our trip is over! Similarly, if we believe Autism is an impossible-to-handle problem or that people with Autism cannot learn, our "trip" is over as well. What we believe about Autism and the people who have Autism will determine the approach we use in teaching them.


a child is a person, not a 'behavior'

What we must believe about a person with Autism is that he is a person first, not a "behavior." He is a person with Autism, not an "autistic" person. I am not saying this to be "politically correct". It just helps me to see the person before I see the behavior. If I am dealing with a behavior, I will work on getting rid of the behavior or changing the behavior.


I will be less friendly and understanding with a "behavior" than I would be to a "person" who happens to be displaying a behavior. Do you see the distinction? We need to see the personality of the individual with Autism as separate from the Autism. We need to know that even if the Autism could be magically removed, the personality of the person would still be there, for better or for worse.


Years ago I trained caseworkers who worked with parents who had abused their children. My message to them, as difficult as it was to put into practice, was to "find something you like about the parents." This message certainly applies to those of us working with persons with Autism. Look beyond the behavior to the personality, to the personal qualities, to the "soul" of the person with Autism.


the autistic child as more normal than abnormal

We also need to understand that persons with Autism are more normal than abnormal. The person with Autism has normal feelings and reactions, but may have a very different way of expressing those feelings and reactions. Many persons with Autism communicate their emotions through their behavior. The symptoms of Autism include behaviors that all of us engage in at one time or another. The difference is one of quality, that is, how often the behavior is performed, how long is the behavior engaged in, and is the behavior performed to the exclusion of other behaviors?


The person with Autism tends to perform certain behaviors that, in moderation, would be considered normal or typical. The person with Autism may lack the ability to use cues around him that tell him whether or not his behavior is socially acceptable.


The person with Autism may lack the ability or interest to change his behavior to fit social expectations. For example, when I was a kid, I was shy and had a hard time looking people in the eye (one of the symptoms of Autism). As a teenager, my first job was a pinsetter in a bowling alley. Since I never had contact with people (only bowling pins and balls), I had no problems with this habit. However, when I got my next job as a counter person at McDonald’s, I had to force myself to look people in the eye.


The difference between myself and a person with Autism (even though we had similar behaviors) is that I could use the cues around me to correct the behavior. I also have a habit of biting my cuticles, however, I can stop myself long enough to complete this article; a person with Autism may prefer to bite his cuticles (or other body surfaces) to the exclusion of anything else.


understanding the needs behind behaviors

Understanding the need behind the behaviors in Autism can help us to teach other ways to meet those needs. For example, a person who bites his hand for hours at a time may have a need for oral or tactile stimulation. It may be that chewing gum or a vigorous arm massage will meet this same need for sensory stimulation but in a more socially acceptable way. Sometimes behaviors in Autism are performed to the exclusion of other behaviors because the person is not aware that he has a choice. Teaching other behavior options (that still meet the basic need) gives the person more choices. More choices mean more freedom.


The biggest "handicap" a person with Autism may have is our assumption of what the person can and cannot do! We need to raise our expectations for persons with Autism, not lower them. Do not allow a person’s IQ score to determine what activities you will present to the person (and thereby limit the person). Remember how an IQ score is obtained. An IQ test requires social interaction (strike one for a person with Autism), communication (strike two?), and behavior that does not interfere with testing (oops, strike three?). All persons with Autism can learn, but they may learn in different ways. This belief helps me to look at what I am doing to support the person’s learning, rather than just look at what the person is or is not doing. When we say a person cannot learn, we are actually saying that we cannot teach him!


handling aggression

A case in point: a child I worked with recently was quite violent with me. He would bite, pinch, and hit me whenever I tried to teach him anything. I began to doubt that I could ever help him. However, finally (with God's help) I stumbled upon something that was truly motivating for him, which I could use as a reinforcer for his working. The end result was that he worked for a full twenty minutes each session to earn the reinforcer without any aggression! The young man's behavior was not the problem. My lack of knowledge as to what was truly motivating for him was. That is not to say that another person can be blamed for another person's bad behavior. It merely says that behavior is a two-way street. The person has a part to play (the behavior) as does the teacher or parent (the response).


a better teacher and trainer

Thinking about Autism in this way has helped me to be a better teacher and trainer. It has helped me to look a little deeper, to look at what I am doing to help or hurt the situation, and to always have high expectations for those persons with Autism I work with. It will not cure the Autism, but it may help to expand the person's world even just a little bit. And that's a good place to start. Now get out there and do some good!


by Gary J. Heffner, creator of The Autism Home Page at MSN Groups.


Close Autism personal story

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A parent looks at more positive ways of viewing diagnosis, interventions and behavior management for Autism, Asperger's and Autism Spectrum Disorders