For those who have a young child diagnosed with autism, the future seems uncertain and a bit scary and the challenges seem insurmountable. There are a bounty of opinions as to the cause, and it is easy to get wrapped up in finding someone or something to blame rather than dealing with the hand that has been dealt.
I remember when I first got my son's diagnosis 14 years ago. I really didn't have a clue what autism was. I did what the neurologist said, and went to the library and looked at a few books and immediately decided not to accept what the books said. Why? Because they offered no hope. I was not in denial about the diagnosis--the characteristics of autism of my son were undeniable--I refused to accept that there was nothing that could be done but prepare for my child become a fairly useless member of society. I loved my son and saw such good in him, I refused to accept anything but a successful outcome in helping him to realize a "normal" life. Whatever was to happen, I wanted him to be happy and proud of himself for whatever he could accomplish.
At age 2, his first year of early intervention through the county school system began, but it was a waste of time. There was no solid plan to deal with his specific problems. Various therapies were tried and educational plans were hit or miss, but none were specifically tailored to deal with the problems of autism. I knew something more global and intense was needed for him to progress. Luckily, at about that time, a new pilot program for autistic preschoolers was being developed in the county school system. It offered more intensity and the program was based on a Lovaas model that was specific to autism. I had to fight for one of the 6 openings, but was able to get my child into the program.
I then started reading up on what the Lovaas model entailed and found that the program only worked with about 35 hours of intense applied behavioral modification per week, and only if a competent home program was establish and adhered to. The county program provided 16 hours, but I would have to provide the other 18-20 hours for it to have a chance of being successful.
This type of program was new at the time. UCLA was very involved in coming up with training for people to develop and implement the applied behavioral analysis required to make the program work; however, program managers were in short supply. I could not find anyone to hire to manage my son's home program. I knew it was an essential part of the program, so I had no choice but to study and become my child's own program developer/manager. I was lucky in that my degree was in Communication Arts, and much of what I had learned would give me a basis for developing the program and understanding the nature of basic communication.
I gathered as much information on the methods of applied behavioral analysis as I could, created documentation, tools for implementation, record keeping systems, and designed discrete trials that would complement what was being done at the school. I interviewed, hired and trained people to assist in working with my son. All the time I felt blessed that my husband had a good paying job that would allow me to spend my full time devoted to the task of working with my son and still being the mom to my two other sons.
When the whole program started, my son was almost 3 years old. He could not say any words, he couldn't look at anyone in the eyes,he was in diapers and he was very out of touch with the world around him. I worked out of fear that he would be this way for the rest of his life. It propelled me into dedicating my life to helping him out of this void.
The next 2 years are somewhat of a blurr. I worked every day, creating and shopping for materials to use in the program. At that time, not much existed in the way of materials. Every noun he was to learn had to have a clear and distinct photograph or picture. Then the verbs, then the adjectives, then the adverbs. Emotions, cause and effect, consequence, social interaction and everything in life had to have a picture in order to teach my son. I pored through magazines, scouring for pictures that captured what we needed, clipped and laminated and categorized the pictures and created binders of data collection pages that I and the other workers could document the results of each trial so we could record and retest each success and failure. In the back of my mind, I kept Gippetto's goal of having a "real boy" through creating a child able to communicate and enjoy life.
We started seeing success quickly. At first the words he could say didn't seem to have a lot of meaning to him, and to an outsider it may have looked like a dog being trained to bark for a treat, but we continued in the pursuit of language. Once enough nouns were attained and he could recall them from the cards through the use of a reward, we worked on some basic verbs. Then we connected the two in to two-word sentences. Then a few adjectives to describe the attained verbs. It was all baby steps toward what is called the "Theory of Mind."
After three years of this, my son had very basic communication skills. I had taught him to read phonetically, which was the only way he could begin reading. Phonetics has a system and I knew autistics thrive on rules and systems, so my home program employed phonetics. Despite my argument that phonetics was the best approach, the school insisted on using sight reading. In the end, phonetics was shown to work best with my son, as admitted by the instructor.
Despite his growing ability to have basic communication, we would often find gaping holes in his understanding, because these particular things had not been specifically taught to him. When this happened, it made me realize just how much he had missed by not being able to speak as a young child and how much he had never learned through the normal activities of growing up, through having typical conversations, by understanding what was being said on television, out of everything that a normal child hears and says in their toddler and preschool years. It was very easy for someone communicating with my son to assume he knew or could infer each word they were saying. I would have to interrupt and say, "Do you know what ___ means?" and then explain that word. In a conversation, if there were too many unknown words, he would "zone off" and be unresponsive.
In early kindergarten, he was put into a Severely Handicapped Class at the district level with pull out sessions for discreet trials. I could see this was not effective. He needed to be with typical kids to learn to be typical himself. The next year, I had him mainstreamed and have never gone back to a special ed classroom setting, except for a one-hour socialization class for a couple of years.
So now, here I have a 16 year old who is a freshman in high school. He is on an IEP, fully mainstreamed. He is taking French 2, Cultural Geography, Biology, Geometry, E-Core English, Advanced Art, and PE. Is he an honor student? No. Does he have an aide? Yes. Is he getting good grades? He is getting Bs and Cs. Do I care what grades he gets? I am not concerned as long as he can cope and he passes. Will I always feel that way? Maybe not. What am I most concerned about? I worry that he does not have a best friend. I worry because he wants to have a girlfriend and go on a date. I worry because I know he wants more out of his life, but the things he wants I can't give him. He is now to a point where he is going to find them on his own and it is not going to be easy. But one thing I must say is that I have confidence in him that he is going to get where he wants to be. It may take a little longer than it does for most kids, but I think he is going to make it, and when he does, it will be all his own doing and he can feel proud of himself for arriving.
My son is popular among many kids at the school. He has a great sense of humor, he is handsome and smart and extremely talented at art. The kids who have known him through the years seem to really like him. They know there is more to him than his little autistic idiosyncrasies. On the other hand, I think these idiosyncrasies are what prevents these teenagers--who by definition are insecure about who they are--from including him in their social life. But I think one day they will mature, and perhaps then my son will have some friends to "hang out with."
Being the parent of an autistic child is filled with challenges, with feelings of success, with fears of failure, and with the feeling that you should have done more or known more. I have had to ease those fears and feelings by telling myself I have done the best I could. I feel the key to helping an autistic child is never to let the diagnosis become more important than the child.
It is so important for the autistic child to know they are unconditionally loved, understood, and accepted for who they really are at home. Home needs to be the true refuge from the critical outside world, because his world is much more critical than a typical kid's world. He will hear the comments, get the stares, see the snickering. Home needs to be a place where emotions can be experimented with, a voice can be raised, a tear shed, all the while knowing there will be understanding and no severe consequence merely for the awkwardness of expressing those emotions. When there is awkwardness and inappropriateness, it needs to be looked at by the parent as an incredibly valuable opportunity to work through those problems in a safe environment, rather than have these problems occur somewhere else where they will be misunderstood by others.
For the autistic teenager, home is a place to learn the difference between right and wrong and to talk about those things openly without fear. Home is a place for the autistic child to allow his thoughts to be heard, no matter how scattered or unformed, and for someone there to care enough to help him clarify his thoughts, look for their basis, and to help the child understand himself better.
For the parent of an autistic teenager, if you have managed to arrive at the teenage years with a happy child and your home life intact, you can consider yourself one of the very lucky ones. You certainly have needed to gain a different perspective on life. You have most likely developed a personal sense of humor that gives you the ability to cope with the things your autistic child has done and continues to do. All of this has been good. Having an autistic child has been a humbling experience, in the best sense of the word. You are able to accept and weigh just about anything. You don't make snap judgments based on a person's initial behavior. You analyze situations for what they really mean. You pick up on body language quickly. You listen better. You are able to read between the lines quickly. You continue to have hope because you see you have a happy teenager who is starting to go through the things all kids go through.
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