It did not surprise me to come home and find that my ex had made no attempt to put my son to bed. Getting him to sleep was one of the hardest jobs of all. It could take him easily an hour from putting him in bed before he actually fell asleep. I had to lie next to him until he had fallen asleep, otherwise if I tried to move away he would grab me and pull me back. As if to him falling asleep, although he recognised it was necessary, was a fearful thing to do. I have no idea what his sleep was like. It could have been dreamless and black, it could have been full of abstract images, brightly coloured, but whatever it was that was going on in his sleep I was not to leave him until he had finally succumbed. If I miss-judged and left before he was truly asleep he would get out of bed and come looking for me. In all honesty, I think this process scared his mother and it was why she avoided it. I always felt lying next to him waiting for him to fall asleep was a huge responsibility and something not to be taken lightly. Of course, she could have been just plain lazy.

The problem was, and it was becoming ever apparent, that she was not coping well with his autism and the daily challenges it presented. Not only was I holding down a restaurant manger job, I was also becoming my sons main carer, and when I was not at work I was attending to all of his needs. Taking him to school and collecting him (this was possible on most days as I worked split shifts), taking him to his various appointments, putting him to bed, bathing him, and so on. When my one weekly day off arrived my ex disappeared and left me to look after him,  stating my day off was her day off. Much I enjoyed my time with my son, it left left me wondering when was my actual day off to recharge and rest? Something had to give ... 

Having found all of  his sensory needs and autistic foibles met at special school, it was a shock for my son to go to mainstream primary school. Naturally he was going to find it difficult. For any child at that age (4 and 6 months) first starting primary school is a huge transition, but for him this was multiplied many fold. It seemed he was prepared to tolerate mainstream if it was also combined with special school, but as soon as it was mainstream, and mainstream only,  for him everything changed. Since he had very little language at that time the only way he could react was through actions, hence his behaviour every morning for at least the first 3 months of attending. One of the things he would do when no one was looking was to leave the classroom and go and explore the rest of the building; and he was fast. They only had to take their eyes off him for a few seconds and he was gone. The head teacher had a theory that he was trying to learn the layout of the building, which in turn she thought would calm his fears about being there. It was common for him to be met in the halls by various members of staff and taken back to his classroom. He was fast becoming well known among the school fraternity.

For his first year of schooling he was assigned a learning assistant who was excellent. She had two boys of her own around the same age and she became more than just a member of staff to him. Along with a detailed report everyday at the classroom door he came home with a daily diary, which we also had to write in about what he did at home. This was invaluable as it helped me start to learn about how his mind was working and what he responded to best. Music was, and still is, a big part of his life; he loved all the 80s music I would play in the car. He also loved being in the car, no matter how long the journey he never seemed to get bored and he completely went into a world of his own. This was something I marveled at, but my ex was not so enthralled. In fact she was having less and less involvement in his life. Almost every evening I would return home from work to find him asleep on the couch and his mother waiting eagerly for me to finish putting him to bed... 

We were told that special school would only allow my son to attend until he was 5, after which he was to go to mainstream primary. It was felt that initially he could split his time between special school in the mornings and mainstream in the afternoons. Before starting primary the teachers at the school put together a little book of photographs of the school and themselves so my son could get some idea of what to expect. They also arranged a visit. For some reason it was sitting with my son at home looking through this book that most upset, even now. At age 4 and 6 months he did not have much language, and to be flicking through the pages of this book and talking to him about the people and things photographed I felt wholly inadequate. In no way qualified to be preparing my son for what was to be the greatest challenge of his young life.

Many professionals in the field of autism will tell you that from time to time you have to take the autistic child out of his comfort zone; you have to push them so that they can grow their confidence. When it actually comes time to do this, something I see great virtue in, it can be very hard and upsetting. Not just for the child, but also for the parent. The start of mainstream primary school was one of those occasion when my son was taken way out of his comfort zone. He loved the special school, his every need was catered for, he was never out of the sight of one or more carer, who all had experience of working with autism. At the school it was a different matter. Although he had a learning assistant with him at all times he still had cope with a class of nearly 30 other children: a big difference from six. He very nearly reached sensory overload and I am sure it was touch and go for everyone involved whether or not he was going to be able to continue at mainstream. It is why every morning for at least 3 months he had to be coaxed away from me (my ex had passed on that duty to me). We usually ended up at the fish tank at the reception of the school, as he loved the movement of the fish, and it calmed him. That is where I left him most mornings, but I was not able to say goodbye and wish him a good day. I had to slip away unnoticed ...

I used to work as a restaurant manager. I would have to work a lot of hours, normally split shifts, 4 or 5 hours for lunch then back in the evening for another 5 or 6 hours. This meant that I was not able to spend as much time with my son as I would have liked. It also meant that his mother was his main carer. Sadly after the diagnosis of autism she became like a woman on a mission. One afternoon when I returned from work I found her trying to teach my son to speak, and she seemed convinced she could do it. She had bought a set of 'flash cards' with various words on them, and she was holding them up one at a time trying to get him to say the word. I think he attempted two. He did not seem upset by what she was doing but it certainly upset me. I have always felt, then and now, that one's home is one's sanctuary; somewhere to find peace and calm, somewhere to relax, somewhere without stress or pressure. He could get all the support for learning he needed outside and at home he could just play. That is what I thought and what I calmly explained to his mother. As she was having little success with her endeavours she immediately agreed and the flash cards went into the trash.

It was this incident that made me begin to worry. What was she doing with him while I was at work? What did she really feel about the fact that she had an autistic son? Albeit "high functioning", she added that after every time she told someone for the first time. It was pretty obvious that she was having great difficulty excepting the diagnosis, but worse than that she was not sharing her thoughts with me. In fact she was even trying to blame it on me. I became more convinced of this when she kept making excuses for not taking him to school. This was a very hard task as it involved a lot. First, getting him dressed without his compliance, then trying to make him look as if he had had some kind of wash before school. But he would scream the house down when faced with any attempt to wash him (baths were a complete nightmare, I am sure the neighbours were close to phoning the police on bath nights). Then when we did arrive at school it took at least another 15 to 20 minutes after the bell had rung before he would let me leave. He would cling on to me for dear life, but gradually his learning assistant and the school librarian would coax him away from me and I could leave. Mightily upset I have to add ...

In the following few months life settled into a pattern with my son attending the special school and nursery, and all the child care  professionals doing their best work. Gradually we could see an improvement, but very slow, almost as if he did not want to leave his deep autistic world. Like he was having more fun in there. I used to play a game with him where I would cover us both with cushions on our couch, blocking out all light and I would pretend we were in a cave. I would call out his name and say, "It's me your father, it is too dark, I can't see you, call to me so I can guide you out." Of course he did not reply. In fact he did not reply until we had been playing that game for about 14 months."Dad, I am over here," he said in his best dramatic voice. My god! I fell off the couch. I did not say anything to him about him answering me, I just continued with the game, afraid that if I drew attention to what he had done he might get nervous and not do it again.
It is only now in writing this that I suddenly realize what it was I was saying to him.

"Call to me and I will guide you out," as if I somehow I thought that he was living in another place and I had to guide him out, which is every parents job really.Of course in playing the game I was conscious that I was adopting a technique not unlike the one they were trying at nursery: repeating his name and recording how many times he answered.

What I don't think myself and many parents factor in is the emotional depth we have to reach in order to find the place we can communicate with our autistic children. We have to go just as deep as they are to be able to connect and learn from them what it is that is happening in their labyrinthine minds. Naturally, in the UK there are no lessons about how deep you will have to go with your emotions - but it really should be on the curriculum ...

Well there I am in the office of the pediatrician and she is talking but I am not really hearing what she is saying. I can also hear my wife answering and generally being gushing about how we were faced with a challenge which will be life changing, but we are up to the challenge, etc, etc, blah, blah. But I knew that was all a facade and really underneath she was paddling like hell. For me, I was a little stunned because I was fast realizing that it was not just my son's autism that I was going to have to get to grips with but also his mother's inability to accept it. At one point she tried to blame it on me, saying that "older men when they father children are more likely to father an autistic child", something to do with the sperm count. Which is utter hokum, by the way.

"It will be okay, dad," said the pediatrician, "you will be fine. You both obviously love your son very much and that is 3/4 of the battle." Her words brought me back to their company and I smiled. I did not think it prudent to share what I was really thinking. "Yes," I said, "it will be fine. He has a lot of good people ready and able to look after him." And he did.

He was to attend special school until he was 5. He also had good support at the nursery, and a team of people had him on their radar. Occupational therapist, speech and language therapist, pediatrician, and a child psychologist, all on hand at the special school (Dolphin House). The Council also arranged for a taxi with a carer to collect him on the days he was to go to Dolphin House. Now that it was official, if you like, it did make life a little easier because we could at least put a name to his behavior which helped in sticky situations when out and about. Also, I could do a little research, and a little research is all I recommend as it does not take long to learn that there is no real clear understanding of autism out there ...

So the day came when it was time to hear the diagnosis. We were asked to attend a meeting at the special school where the pediatrician, special needs teacher, speech and language teacher, and child psychologist, were all in attendance. Once the pediatrician had explained to us their process of diagnosis, which basically consisted of various tests and a lot of observation, she told us our son was autistic. After a pause of what seemed a couple of minutes she added, "High functioning of course." I don't know if she said that to make us feel better, but it was the first time I had heard the phrase and I was still trying to digest the first statement because at that time I was not very knowledgeable about autism. After a little explanation I took it to understand that a child with 'high functioning autism' has a good chance of learning how to cope with day to day living pretty much independently.

There then followed the standard  explanation of 'autism', which while it does go some way to explain the behavior of autistic children, does nothing to help a parent understand what they are up against and what kind of behavior they will have to try to navigate through in the coming days weeks, months and years. The explanation of autism and how an autistic child might behave can be easily found on the internet, but no matter how many different versions I read it does nothing to help me. It only told me what I already knew, but it did not tell me what I could do with this information. To me this is the enigma that is autism. You will be greeted with knowing looks and nods from parents of autistic children like we are all members of a special club, but on further investigation you will find that no two autistic children are alike in every way. Most are in fact very sociable, they just expect you to know what they are thinking and where they are coming from automatically. More than other children they love and trust their parents unconditionally, as if they believe the parents will somehow guide them through the fog and panic and insecurity of autism ....
  

During the six month diagnostic period my son attended a special school attached to the main hospital in our area. For the first two visits I was asked to bring him and collect him. On the first day the special needs teacher told me, “He has a long way to go.”, which I found a little disheartening. But on the second day she said, “What a difference. He must have been paying very close attention on his last visit because today he was much more responsive.” 

This is very much how my son behaves. He observes and when he feels he can take part he does. At the school they had various communication techniques. One was to use 'flash cards' with words or pictures on them. A picture of a toilet would be shown to him if he looked distressed, like he needed to go, and so on. They also discovered that to calm his hyper activity if they put him in a part of the room with low lighting he would immediately calm down. Another alarming thing they found about him was that he had no depth perception beyond about six inches. All of these facts helped a lot in better understanding his behaviour. And along with attending the special school the staff at the nursery were helping him to play with the other children in an effort to encourage him to socialize more.

I have been told on more than one occasion that early diagnosis is the key to helping autistic children go on to lead independent lives, get jobs, make friends and generally get the most out of their lives. Now that my son is 11 this is proving to be true.

The name of the special school is Dolphin House. A very fitting name I thought, as I have often looked at my son as either a dolphin in a human’s body or possibly a dolphin from a previous life. I think any parent of an autistic child will know exactly what I am talking about: they are effervescent ...

We were told by the child psychologist that my son’s diagnosis would take six months and that it would not be prudent to make any judgments until the diagnostic process had been completed. Although everyone involved in this process understood the value to the parents of a name to whatever it was that was happening with my son, they wanted to be thorough in their investigating. That way there could be no doubt as to his “label”. This is a very grey area, but for me I felt that if it meant that we would get support and advice in his parenting then the “label” he was eventually allocated would be a help not a hindrance. From very early on in this whole process I have always felt that my son will have to live in this world. If I had the means we could all of us go and live on an island and live happy productive lives and never the word or thought of autism would enter our minds. And that to me is the challenge. He is a complete person, still young but his character is his and all of it is flavoured with autism. And it is this character that will live in this world. So we have to follow the rules.

All the aforementioned professionals then spent some more time with my son, and he had a visit to a special school. Now, if ALL children were taught like that ... Only six to a class with one teacher, one learning assistant, and a child psychologist on call. My god, what kind of world would we be living in now? Whilst this was going on his nursery teacher was also trying a technique; she would call his name and record how many times she had to call him before he answered. Amazingly it went from eight times to seven and so on till after about five weeks he was down to three calls. It was this that made me realize that he could make progress ...

As well as my son's fascination with running water, his unerring desire to arrange his plastic bricks into colours and not much else, and his need to take all the DVD boxes from the bookcase and line them up like a pathway to somewhere, he did not speak much. In fact hardly at all. He knew some words. His first word was 'cat', which he said when he was only ten months. He said it a lot. I know he understood us; I could just sense it. But he seemed to have no desire to answer questions, or answer to his name for that matter. I was beginning to think we had chosen the wrong name for him. 

He was happy, there was no doubt about that. When we went on adventures we had a great time, but I did think it a little odd that we never really spoke to each other. In fact so much so I used to have dreams in which I was talking to him. We wouldn't say anything of any great importance in those dreams, just chatting like any father and son would. And always when I woke the thought of doing it in real life was tantalizing.

I suppose the most upsetting aspect of his behaviour at that time was when he would lash out. It was not very often, but it was always a shock .This behaviour would follow a bout of frustration on his part when, for example, he was not able to hear the full theme tune to Eastenders. Or my self or my ex would accidentally put his carefully placed plastic bricks out of his sequence (a hard thing to rectify). My only response was to hug him tightly and send him all the love I could muster.This always did calm him down, and happily he grew out of the behaviour. He still has his moments but no where near as pronounced ...