What is autism?

Mgr. Petra Doleželová

The basic question that needs to be answered is: What is autism? It is a neurometabolic disorder. ‘Neuro’ means that there has been a damage to the nerve cells, and we know (see stroke patients) that irreversible damage can be compensated by learning. ‘Metabolic’ suggests that biochemical approaches, such as diet changes, are not just a false hope for parents.

Why is it so hard to believe that ASD children can be helped to learn by very thought-out behaviorism methods? Why is it in people’s minds that autism is a mysterious mental disorder, and why is our general public – as well as professionals, unfortunately – convinced that the only way is reconciliation? How many doctors have told me that there is nothing to be done? So many. How many friends and family members have told me the same thing? It is so tiresome. If you do not understand that there is a lot you can do, you are not even motivated to try it to the fullest of your abilities.

I see autism in children as an empty space that was created when the child has, for some reason, lost many of its functions – the child does not know how to communicate, does not know how to play. The child does what is has left and what satisfies it – shakes its hands, spins around, puts things in rows, hums. This, of course, is of biological nature.

Because the child can’t communicate and often does not even understand what we say, it fears the unknown – a new route, new sweater, new food, new person… We call it anxiety. I see it as fear – the child has its “certainties” in the form of things it knows and in which it has tried many times that they don’t do anything wrong – old routes, old clothes and shoes, familiar food, familiar people. The child does not understand what is happening when we are taking a different route, and it thinks that there could be danger. Due to the lack of communication skills, from the child’s perspective, fear is completely natural and understandable.

Unfortunately, many professionals have not yet understood this simple truth, and so parents are told that their child has a severe disorder and needs certainties and rituals to be followed. “Don’ hope for improvement, autism is incurable,” they are told. I disagree. We should take the child gently by the hand and say that “new” is not bad, that there is nothing to fear. There are methods to do this as subtly as possible. We may not avoid crying or anger, but that is alright. The child will live through the situation, and nothing will happen to it as it goes through it hand-in-hand with its mother. A piece of the child’s fear washes away, and the child’s bond with its mother (therapist) gets stronger. We don’t go “life is change” on the child all of a sudden. Carefully, we establish a procedure and address one problem after another in a slow and methodical way. Situations can be trained, the child can be motivated, and desirable behavior can be rewarded.

Our ASD child, who has lost many functions, is left with a tiny world of repetitive movements and rituals into which it encloses itself. Let’s not take that away from the child, but show it that “our” world is vibrant, colorful, fragrant, and full of laughter and joy. Take many weeks and months to pull the child into our world, but carefully – non-violently and based on the principle that the child “has to” want that. The child has to understand that bubble blowers, swings, playing catch, candy, rocking in blanket are all in the mother’s possession and that she will always play with the child. The child should see the mother (therapist) and squeak with joy as it knows that there will be fun. It is no sooner than this moment when we become something amazing in the child’s eyes that we can start with learning. No sooner.

The most common mistake is that we do not represent something like this to the child, it does not make it happy when we approach it, and we sit the child at a table and start teaching it. Or worse, we drag the child there, forcing it. This only teaches the child one thing – that we don’t understand it and that our world is not worth knowing.

Therefore, advice number 1 is to become a “positive affirmation” to your child. Then everything connected with you will automatically be positive too. This takes more than a week.

Advice number 2 – stay that positive affirmation forever. You can’t swing a magic wand and go from the supermom who played with her child 7 hours a day to an inaccessible housekeeper who only takes her time for teaching at a table.

As we pull the child into the world of toys, playing and funny people, it won’t have time for its own world anymore, it won’t have the need to be in it, and its world will become smaller and smaller.

Just as we motivate the child, we first have to be motivated ourselves. My main question to every parent is – do you believe that your child’s condition can get better?

This is usually the moment that rattles the parents. They know how tired they are, the hopelessness they feel. And so they act. But with this question, parents often stiffen and realize that they don’t really believe it. Then there is no point to even start with Applied Behavior Analysis (ABA).

The only thing I believe all Czech experts have rarely agreed upon is the formula that autism is incurable. They often complement it by saying that anyone telling you otherwise is a charlatan. Often the disorder is very difficult, and although we make great progress, the child’s autism is very noticeable. But sometimes a child has a moderate or slight disorder, the parent starts attacking this disorder on all fronts, and in a few years everyone shakes their heads with the words: “I’m sure he never had autism.” A paradox. It is important to note that autism is often diagnosed based only on a number of symptoms. Simply put, if a child has “x” symptoms, it is diagnosed with autism, and if it has “x-1” symptoms, it is not diagnosed. If a child is close to the threshold, and if we stretch our efforts, I believe that we can cross this threshold.

The people who take that hope away from you close their offices at 3 p.m. and go home. They do not understand your situation. Coping with the diagnosis is a necessity. Reconciling and giving up is a tragedy. Looking at the overwhelming majority of people with autism, I am saying that they are not happy, they want our helping hand. And as we are sometimes criticized that by trying to help our children we demonstrate a lack of unconditional love (which is a logical nonsense), I think that an unconditional help for our children is our duty.

Mgr Petra Doleželová, mother of an ASD child

23 February 2016