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Dear Judy

by Kitty Wagner

Dear Judy,

You asked about life with Christopher after hearing the diagnosis of autism. In some ways it has changed dramatically and in other ways it is much same, as it was before and very typical and ordinary.  Christopher was normal and healthy in every respect from birth on. Around two we noticed that he did not verbalize as much as most two year olds did but knowing he was a boy we did not think too much of it. He also had had his fair share of ear infections and ear fluid from birth on so we thought that might have delayed his speech a bit. We had tubes put in his ears when he was 18 months because we had had great success with those with our older son so we wanted to try them sooner with Christopher and sure enough the ear infections stopped. I mentioned to the pediatrician at well checks when Christopher was two and two and half that I was concerned about his speech but he wasn't worried. When we went to the three year check-up and still only had a vocabulary of about 20 words and those words did not include Mommy and Daddy or his brothers' names, the doctor suggested outside evaluation. Easter Seals did a speech and language evaluation and found he was extremely delayed on both receptive and expressive language. Of course we felt some guilt because we had not come sooner but so be it. We started speech and language therapy right away, twice a week. Our regular therapist was on maternity leave and we had her sub that I came to like and respect. But my blood ran cold on only our second visit she said to me, "Has anyone ever evaluated him for autism?" Just her question terrified us. All along we assumed that for whatever reason he was a bit delayed. It never really occurred to us that it might be something more permanent. This was March of 1995 and we went to the best bookstore in town and found one book on the shelf on the topic of autism. Our only experience with autism was seeing the movie Rain Man a few years before. We had no idea the topic could become so important to us.

We contacted a family friend who was a psychologist. She suggested an educational consultant who had worked with many children with autism. She visited with us and observed Christopher both at home and in his preschool. She wasn't sure but she didn't think he had autism. For nearly two years we rode a roller coaster. We went to a few conferences. I would read or hear things and say that's like him, no, that's not like him! I wasn't sure of my child or myself. Meanwhile we continued with speech therapy and the wonderful preschool we had started with him. He progressed. He acquired more language and started to "play" more with things. Quite honestly he did not play much with toys in his early years. He lined up his toys, he categorized them. He watched many, many videos and learned all the dialogue because he watched them so often. He could sing all the lyrics to a song but still could not tell me what he wanted for lunch! Autism is a tricky disability. Children with autism have scattered skills and very uneven development. Answering questions and conversations were very challenging for him (and still can be!) but computer games, visual images and videos for the most part are how he learns.

Finally in the fall of '96 I decided I had to get an outside evaluation from a children's center. The educational consultant discouraged us initially because she felt we were doing all the right things for him anyway and she worried that a "label" would somehow limit his development. The pediatrician worried about the child evaluation center we wanted to take him to because he felt they were handing out quite a few autism diagnosises and he felt like they would just do that to Christopher also. But we were tired of being on the roller coaster and we wanted some direct answers if we could get them. I have decided "labels" can work for you or against you and I wasn't afraid of the label anymore I just wanted to know what was going on. In February of 1997 all the testing was done. Over several sessions a pediatric specialist, a speech and language pathologist and a psychologist had seen Christopher. We had been interviewed extensively about his development. In order for a diagnosis of autism to be given the symptoms have to be present before the age of three. Keep in mind they were seeing him at age five so they relied on us for his history. Even if you outgrow the symptoms at a later age, if the symptoms were present before age three then the diagnosis is still appropriate. Actually I cannot say we were totally surprised when we were given the diagnosis of autism. We had done lots of reading and talking and studying so we knew that was a possibility. But it still is a moment frozen in time in my mind. No matter how prepared you are, it is unnerving to realize this is something "permanent" you are dealing with and not something he will "outgrow". In reality my husband was actually relieved to have the diagnosis. He felt we now had a starting point. I have to tell you something about our gender reactions to the news. And actually this took place before we got the actual diagnosis but rather when it was only a possibility. David wanted to know about autism. What does this mean? Will Chris be able to learn, to go to college, get a job and support himself? When he learned that all those things are possible he was relieved. I on the other hand wanted to know: will he have friends, can he fall in love and get married? Dad was worried about financial independence and Mom was worried about emotional independence!

I have to say getting the diagnosis has given us a great starting point. We joined the local parent support group and met some wonderful people. We have learned so much more about the disability. We tried to explain things to our teenage boys and our then 15-year-old was very shook up and said to Dad, "You mean, it's permanent?" But my husband explained that yes it was permanent in the sense that Christopher would probably always be a little bit different than his peers but it did not mean he was going to stagnant. He would still grow and change and develop to his full potential. It has been a growing experience for all of us. The good news the field has grown tremendously in just a few short years and we found many more resources this time at the local bookstore and library.

Christopher is now seven years old and mainstreamed in a regular education 1st grade classroom. He has a full time assistant. He gets speech therapy in school for 60 minutes a week in a small group. He gets the services of the Special education teacher for 30 minutes every day. The occupational therapist sees him a few times a month. We also pay to have outside speech therapy every week for 60 minutes. She is wonderful and we had to be on a waiting list for 6 months to get with her but she is worth it. We were paying the $70.00 a week fee ourselves. But just recently the insurance laws changed in our state and we think the speech and language services will be covered.

Christopher's language has improved dramatically since he was 4 years old. He does talk now and actually is very chatty. He talks mostly about concrete things. Abstract concepts are very hard for him. He does "play" with toys in a manner of speaking. He very much likes to collect things. When he was younger we went to McDonald's a lot because he liked to get the "whole" set of toys from the Happy Meals. He goes through lots of fads with toys. He had to get all the Thomas trains and various Disney toy "sets" that match the videos. Lately, he has become enamored of Playmobiles. We do not have as many tantrums as we did when he was frustrated with language but there are still some things he has a hard time understanding. We use a "reward" system A LOT to get compliance and it definitely works with him. Although it can be draining (emotionally and financially) to come up with the right reward. We also try to keep his life in as much of a routine as possible. We write on the calendar the days we go to school or church school or stay home (Saturday!).

He has had a few sensory issues that we have had to make adjustments for and some he has outgrown. He used to be very sensitive to tags in his clothes and certain kinds of fabric but that does not seem to be an issue as much with him any more. He has always been sensitive to loud noises and for some reason around age three got downright phobic about basketball buzzers. For a long time he would not even go into a gym. Now he will go into a gym if the scoreboard is not turned on but will still never watch a basketball game. This has been a problem because both his brothers played at various times but we could never all go watch. He also is very frightened of thunder and so doesn't like storms in general. On the plus side he is fascinated with the weather and likes to look at all his weather books and talks about weather conditions. He bites his nails terribly and can get easily stressed when too much is demanded of him. His testing revealed an IQ of about 76 although any nonverbal IQ tests were much higher. In school he is working on grade level, with assistance. He has a great visual memory and does well in math and is learning to read. He interacts with the kids but cannot have very involved conversations with them. He does not have many friends and is not invited to do much with other kids his age. We do not have kids here much because he entertains himself so well watching TV, drawing lots and lots of pictures and lining up his Playmobile guys! He also loves to play Nintendo and wows his brothers' friends with his ability sometimes.

We know we need to work on the social interaction more in the future and we need to have more kids to the house. He will be trying an intensive speech and language therapy program every day this summer so we are hoping to see some conceptual gains there. When you talk to him you can get a sense of his disability because he often sounds more like a 4-year-old. But most often he looks very, very typical and fits into his classroom setting as just one of the guys! His diagnosis is "high functioning" autism. He is not technically "Asperger's syndrome" because those kids usually have more typical language but more social difficulties. Christopher's social problems probably evolve more because he has language challenges. Many people tell me he seems so normal. Does that make me feel better? I know they mean well, but I also know what his challenges are and I know he is not typical. When you learn your child has a disability you go through the cycles of grief but what I've learned is that you may often "revisit" those stages of grief again and again as a new transition comes for your child's life. That is the parent's challenge. To keep moving forward and not get stuck in one of those stages where you cannot help your child to learn and grow and be all he can be! So yes, life is radically different for us because the disability is always out there but it is very much the same because we laugh and love and grow every day like all families. There is life after autism. Hope this helps.

Love, Kitty

Kitty Wagner is secretary of the Autism Society of Kentuckiana.