The Importance of Proper Support

When we go out (to the grocery store, to the park, into a restaurant) people stare at my son quite a bit. He makes funny and very loud noises, gets aggressive at times, behaves very differently and naturally draws a lot of attention. It is people's reaction, though, that makes the difference: whether they just turn their eyes away quickly, maybe even with a disgusted look on their face, or whether they are compassionate, giving an acknowledging smile or even offering help. I love my son and I would not want him any other way. He certainly is the joy of our life, and he helps us discover life in new and entirely unexpected ways every day. But still, life with a very severely affected autistic child is not always easy.

Having a good support system helps us very much. In school, my son has a one-on-one aide whom he has known for more than four years; also, our afternoon caretaker has worked with him for four years already. Altogether, we can provide comprehensive and consistent care. Since my son does not talk, we are working with picture and word cards, with a talker, as well as with time-related and spatial structuring methods. This has alleviated many problems.

My son loves his caretakers and they show great affection for him as well. I feel very good about the fact that he does not only focus on mom or dad, but learns to let other people into his life, and that he is a part of other people's lives as well. Hopefully, this will be quite helpful to him when he grows up. Like most parents with a severely disabled child, we think about the time when we might not be there for him anymore. I feel it is utterly important to equip him with the ability to live with others, to be part of society.

It has been proven beyond doubt that early intervention and good care can alleviate a lot of the problems that people with autism might have as children or might incur as adults. Intensive educational benefits therefore actually reduce future costs, which society might face when a person with autism has not been helped properly and is extremely difficult (and expensive) to care for as an adult. Let alone thinking of how happy or unhappy a person with autism can be, depending on how good he or she has been cared for and how much development of his or her abilities has been encouraged and appreciated.

I would like to end with a recent uplifting personal experience which might underline the importance of proper support. For a long time, we have implemented PECS as a means of communication into our every-day life, but it remained a one-way street: we were showing our son what we were doing next, and he seemed to appreciate that, but he never took up his end of the rope to use the picture cards himself. Very slowly, after years of working on it (and I have to stress again that my son is very severely affected, so our progress is probably slower than that of a lot of other children with autism), we are now seeing him discover the world of communication. He is bringing the "kitchen" card, in school he gives his aide the "more" card at lunch when he wants a second helping, and at home he frequently brings the "bathing" card, a laminated photo of him sitting in the tub with the word "bathing" written underneath. He loves to take baths, so he might bring that card three times a day.

One day, I hid the card, because John had already taken a bath. He went to the drawer that contains all of his cards, and he was searching and searching. Previously, he might have gotten frustrated and aggressive. But he kept on searching and then proudly presented the card "swimming pool." Then he walked right up to the bathroom door with a smile on his face that seemed to say: "I won this one." Consider the cognitive effort: he had a desire, he decided to try and communicate this desire, he had to know what he was looking for, he had to deal with the fact that he wasn't finding it, he had to muster the patience to look for an alternative, and then he had the abstract understanding to realize that out of all cards the pool comes closest to the tub. Moreover, his triumphant smile suggested that he understands social interaction: it really seemed like he knew I didn't want him to take another bath (which I had also told him and his verbal understanding has gotten quite good), but he found a way to trick me into it, smart little guy. Of course, John was allowed the second bath then.

I am very touched by John's progress and it makes me believe even stronger in demanding the best education for our children: a lot of frustration and aggression can be diverted this way, and be replaced by a happy boy who is very proud of his achievements.