Raising a child with #Autism Story

From day one Clare knew that there was something different about her son. After four years of frustration and waiting lists he was finally diagnosed with autism and able to get the attention he needed. Here Clare tells her story about bringing up a child with autism.

I felt from the very beginning that Sam was 'different'.  He was undemanding, didn't ask us for anything and would sit playing happily on his own.

He didn't cry, never showed any signs of being ill, he didn't need that constant reassurance other children demand – and that his sister, Elizabeth, just 18 months older, had needed.

As a toddler he never went through a clingy stage. He didn't seem to care whether he was with us or not and when I first took him to a toddler group he showed no separation anxiety at all.

In many ways it was a relief that my second born was so ‘easy', but it worried me too because I wasn't getting interaction with him. With his sister demanding a typical three-year-old's share of my attention, I was worried I wasn't giving Sam enough.

Once he got a pin stuck in his foot. The only reason I realised was because I saw him limping. Why hadn't he come and shown me? Why hadn't he cried?

It wasn't just his behaviour. I had taught Elizabeth simple sign language before she could talk and she'd taken to it really well. When I tried to teach Sam he didn't show any interest at all.

Right from the beginning we had a feeling that something wasn't quite right.
Call for help
I thought that maybe Sam wasn't responding because he had a hearing problem. I brought this up with the health visitor when Sam was only eight-weeks-old. The response was that he was fine. We asked that his eyesight be checked. Again, we were told that he was fine.

In fact, most people told me the problem was with me, not Sam. It was very hard to get anybody to take my concerns seriously and this became very frustrating – I ended up having to convince people that I didn't have post-natal depression.

I kept telling them there was something different about this child. Nobody would listen to me because all they could see was a happy, healthy boy. Of course when the various health workers reassured us that there wasn't a problem, it was exactly what we, as parents, wanted to hear.  Each time we felt relief, but in reality the doubts never went away.

Thankfully my husband shared my concerns right from the start. Gradually a few friends started to listen to us and we got some support from them. On the other hand, it seems to be socially unacceptable to say that there's something 'wrong' with your child, and many of our friends just avoided it.
Looking for clues
So, we started the long and frustrating process of getting ourselves onto waiting lists for diagnosis.

While we were waiting we managed to get an appointment with a Speech and Language therapist about Sam's poor communication, which – it had been suggested to us – might be down to tongue problems or a lisp. Within five minutes of meeting us she told us: "Of course the problem isn't a lisp, it's your son's autism."

I was stunned. When it dawned on her that we didn't know she tried to back- track, saying that she couldn't possibly make a diagnosis.

In a way it was quite a relief because somebody was taking us seriously. However, it was distressing to have been told in that way.
Waiting game
Now the word 'autism' had been mentioned I started to trawl the internet, looking for information. However, we still didn't have an official diagnosis – and we couldn't get anybody to assess him. We 'fell off' waiting lists when paper-work was mislaid, the paediatrician we were waiting to see went off on sick leave… it was a nightmare.

Everything we read said that you should diagnose autism early in order to put intervention strategies into place. We felt these early years were really important and that they were being wasted. The waiting list process dragged on and on.
Nursery and school days
When Sam started nursery he didn't show any anxiety at being separated from us, but had an alarming tendency to wander off. He had no sense of being part of a group. He would get into trouble for not following directions given to the group and for "not doing as he was told". He didn't even recognise me when I came to collect him at the end of the session and had to be told which adult he should go home with. It was awful. We didn't feel that he was safe, and we felt that the situation was slipping away from us.

My husband and I were very concerned about Sam starting school the following year. It became a deadline for us to get a diagnosis and therefore some support.

We had a fear that his behaviour was looking more and more like naughtiness. It's very hard to prove that your child isn't naughty or rebellious and even harder to show that, as a mother, you're not being over protective or obsessive.

Everything we read said that you should diagnose autism early to put intervention strategies into place. We felt these early years were being wasted.
The breakthrough
After 18 months of waiting list nightmares, we finally managed to convince our GP to refer us to Great Ormond Street Hospital. Within a matter of a few weeks we had an appointment.

A health professional came to our house. It was the first time throughout this whole ordeal that somebody had spent time with our son and taken us seriously. It was wonderful.

We went to London to the hospital for a full day and all our concerns were addressed. Finally we were being listened to, people were asking the right questions and everything we were saying was being taken seriously.

The various diagnostic tests showed that Sam is, indeed, autistic – but the IQ tests showed also that he is far brighter than most children. At last it wasn't just about something being ‘wrong' with our son; we were being given evidence that he is a fantastic child with huge potential.

The appointment was at Christmas time and I remember returning home feeling exhausted but delighted. In a way it was probably one of the happiest days of our lives. And the fact that one of the best hospitals in the world had diagnosed the condition made it even better. I was able to say to myself: I'm not mad, Sam's not mad and we're not a dysfunctional family.

The whole process of diagnosis had taken four and a half years, despite the fact that I'd tried to get help since Sam was eight weeks old.
A new start
When the diagnosis was confirmed Sam had been in school for nearly a term. We took him out of school straight away. Instead, my husband and I started spending lots of time with Sam. We felt like we'd wasted years on the process of getting a diagnosis: it had been practically like doing a full time job.

We felt that Sam wasn't safe in school, and that he wasn't learning anything. He could read fluently already and would sit happily in the corner with his nose in a book. Yet he would be stopped from doing this to join the others in ‘learning to read'. Meanwhile, the social rules of the classroom were incomprehensible to him, and he wasn't getting the help he needed to interpret them.

I had given up my job as a secondary school teacher to have children.  I felt confident I could meet Sam's academic needs, and at the same time give him the intensive social support he needed.
Sibling relationships
Taking Sam out of school and being able to focus my attention on him during the day also meant that I had more time for our daughter.

Elizabeth had found it very difficult at school. At only six years old, she felt she had to intervene on her brother's behalf with the various adults at school who saw him as ‘naughty'.  We were concerned that this was not her job.  Taking Sam out of school took the pressure off her. 

She was very protective of him, but was also starting to show signs of jealousy. At home all she heard us talk about during the years when we fought for a diagnosis was her brother. Just before we took Sam out of school, Elizabeth's teacher went round her class asking the pupils to offer an interesting fact about themselves: Elizabeth's offering was that she had a heart murmur. She felt a need to invent an interesting ailment in order to be noticed.

After Sam's diagnosis we were able to stop obsessing. We knew what the issue was and could start to work on ways to work with it. The panic had gone and we went back to being a normal family, doing normal things.

The whole process of diagnosis had taken four years, despite the fact that I'd tried to get help since Sam was eight weeks old.
A son with a difference
Sam occupies a different world to the rest of us. To him that is a wonderful thing, and he's probably the happiest child I've ever met. He's very seldom anxious and we've managed to protect him from most stressful situations.  We respect his ‘other world' and are working with him to manage life with it.

At eight-years-old he has really high self-esteem. He says the reason why he doesn't go to school every day is because he's too clever!

He goes into school on Monday and Thursday afternoons. He's very able on the academic side of things but, socially, is eccentric.  Being part-time means that the school, and his peers, can accommodate his eccentricities. I think they might tolerate him less if he went in every day. At the moment he almost has superstar status because he just pops in every now and again, and so is always welcome.

Sam and I have a fantastic relationship. I love spending time with him. He's so funny and original and we spend lots of time discussing things together. I find his view of the world fascinating. He loves facts and enjoys visiting museums, which might seem a bit strange for his age but I think it's great that he's so interested in things.  He teaches me a lot!

Unlike some kids, he doesn't wear us out because he doesn't need our approval or response all the time.  He is happy just to be quiet, and he is an excellent companion.

I wouldn't change the fact that he has autism. It's part of him and it makes him who he is. We don't see his condition as a disability as long as we can help him to manage it. He's very proud of his ‘Asperger brain' (as he likes to call it).

Society seems to want to normalise children, but we want it to be accepted that Sam is different.   Different isn't worse; it's just different.