My own experience, those of many other parents of autistic children and also those of autistic people themselves all lead to one conclusion...that autism does not fit into a box. Most specifically, it does not fit into a 'system' box.
All state services, be they health, education or auxiliary supports, function on the premise that the person comes to the system. These systems take normalcy as their baseline and construct 'boxes' in relation to this. The 'boxes' have labels...therapies, interventions, educations etc.The person also acquires a label according to diagnoses and assessments that are based on deviations from normalcy. The person is then put into a variety of service-boxes at various times and on various occasions designed to align them as closely as possible to the baseline of normalcy. This is how the 'system' works and it works fine for people who fit the boxes and who are willing or able to get into them.
Many children and adults who have milder forms of autism and its related disorders can negotiate the box system quite successfully and can avail of its benefits. Many who are more severely affected cannot. Not only do they not fit the boxes but the nature of their condition means that trying to squeeze them into them is so traumatising that they are made worse not better.
But...because this is the way the system works the pressure placed on parents to squeeze those kids into those boxes can be enormous. The end result is that the parents end up in a doubly stressful situation...firstly, because they are dealing with the difficulties of their child's condition and secondly, because of the external stress that is placed on them to accede to the box system, whether it is right for their child or not.
Is this the right way to help people? No, of course it's not but this is how it is for many of us.
I am anxious in this series of Letters from the Frontline of Autism to be as positive as I can because, sixteen years on, my son is very much better than he was when he hit rock bottom of regression into autism between the ages of three and four. And also because other parents need to know that there is much to be positive about.
But the truth is that what we have achieved has had its foundation in some truly appalling experiences.
Those experiences have always occurred because my son was so severely affected by autism that he was wholly unable to fit into any system box anywhere, never mind cope with anything that might be happening inside them.
For years I tried to explain this to system professionals. A few listened, most didn't and the end result was a sustained pressure on me as a parent to toe the party line, to be a 'good' parent and squeeze that boy into that box. Sometimes, I tried to do this against my own better judgement and intuition because the pressure was so intense it made me feel very vulnerable. The consequences for him were always disastrous.
Hindsight is a wonderful thing. Time has proved my own intuition and understanding of what he needed to be correct, as his progress has proved. That intuition and understanding was specific to him and his individual needs but I feel our experiences have elicited certain key principles which I believe can be helpful to anyone dealing with this condition. I hope also to provide some innovative ways of looking at the autism-box problem that may help parents to get their points over better to professionals and that may help professionals to have a better understanding of what life is like on the outside of the box.
Looking back over the course of my son's life I can see that although the many professionals we came into contact with had all sorts of externally acquired 'expertise' no one was ever looking at this severely autistic little boy and wondering what it was like to actually be him.
Let us start at the beginning of his story to illustrate this.
My son regressed early into autism at fifteen months. There were very significant dietary and medical factors involved in this and I will discuss those at a later point. Suffice to say for the moment that by three years of age he had hit his worst point of regression.
He lived almost entirely in one corner of his bedroom where, in a nest of pillows, he felt safe. He had no eye contact and virtually no response to anyone or anything, not even me.
One day I held him up in front of me with his eyes only inches from mine. It was as if I was invisible, as if he could see right through my head and out the other side...without seeing me on the way. He was locked inside himself.
On that day as I held him up I promised out loud that I would not leave him in there alone, that I was coming in to get him and that I would never, ever give up. He carried on looking straight through me.
He could not tolerate being downstairs with the rest of the family for very long. He could not cope with being too far away from home if he was walking and even if I put him in a pushchair he would scream in terror if we went too far. His only way of safely accessing the world was in the car where, strapped in and surrounded by something solid, he would happily watch the world go by.
Trying to engage him in interaction or trying to coax him to play with a toy produced a reaction of intense fear. His great loves were books, whose pictures he would pore over for hours, and music.
It was at this point that we first came into contact with 'services'. When the first therapist called to our house I went to great lengths to explain my son's problems. He was sitting on the sofa looking quietly at a book. She had brought toys with her and immediately tried to engage him in interaction both with her and with the toys, despite what I had told her. His previously calm face became a mask of terror and he fled upstairs to his bed 'nest'...his only 'safe' place.
She followed him. And then proceeded to repeat the interaction process. He was beside himself with fear because he felt he had nowhere left to retreat to. I asked her to leave.
He did, in fact, have somewhere to retreat to and that somewhere was inside himself. It took days to coax him back downstairs and for the next two months he fled upstairs every time he heard the doorbell.
I refused to have anyone coming in to 'work' with him again and set up my own programme instead. His bedroom was his sanctuary and our kitchen/living room was the place he came for short periods to be amongst the rest of the family and to eat. I couldn't attempt to do anything with him in his sanctuary space as it was vital that he knew he could always be safe there. Similarly, I did not want him to experience any anxiety in the space in which he had contact with us and in which he ate because these things could be so easily blown out of the water also. But to move between the two he had to pass through our large and spacious hallway.
I decided to set this space up with all sorts of colourful and tactile things because he was so visually orientated and was very tactile. I also had background music playing there because this always seemed to calm him.
Whenever he passed through this space I would 'incidentally' play with something, taking no notice of him and making no attempt to engage his attention. Very gradually he came to look. When we got to this point I started to fleetingly place things in his hands, colourful balls, little plastic people, bricks, Playdough. This was a very slow process but after some months he came to actually enjoy these sessions and we had built up to a short spell each morning where we approached something that was vaguely starting to resemble 'play'...a huge step forward for him.
By then we had a new 'service' person coming to the house to oversee his progress. She told me that a nursery class for autistic children had opened about fifteen miles away which she felt he should attend. She was very pushy about this and kept reiterating that it would be 'good' for him. I agreed to try, feeling that perhaps she may be right and that I would be letting him down if I did not take him.
Before he went I explained all his problems to the staff at great length including the fact that when he regressed into autism he had developed an acutely fearful reaction to loud noise, particularly sudden loud noise.
It was incredibly difficult to get him into the nursery but everyone kept saying how 'good' it would be for him and smiled a lot when they said it. After a few visits with me going into the classroom with him he did manage one session where he stayed in there for about ten minutes without me.
Then they did 'percussion'.....so loud that I could hear it outside where I was waiting.
I can't begin to describe the wreck of a child that was brought out to me. This was the first of what I came to call his 'iatrogenic' regressions by which I mean regressions caused by the very people, the 'professionals' who were supposed to be helping him.
Everything I had achieved with him was blown apart as he clung to the safety of his 'nest' for the next two months, coming out only to eat and then scurrying fearfully back. He couldn't eat or sleep properly and lost weight. He looked constantly haunted by fear. He ran past the things that he had come to enjoy playing with.
And all because no one listened and no one ever wondered what it was like to be him, trapped in a room with big, smiling strangers who made his worst nightmare come true by bashing drums and clashing cymbals only inches away from his face.
The 'system-box' was programmed for music time and music time was going to happen whether it was right for him or not.
Through this I learnt what I believe is the absolute first principle of dealing with autism...first on the list above diagnoses, therapies, agendas, programmes and theories comes the simple question...
'What is it like to actually be this person?'
It is the way in, the only place to begin, the starting point for progress, the question we should never, ever stop asking.