Looking back at how far we have come from the ASD diagnosis.

My eldest son is 12. He has autism and ADHD. I never thought I would be able to write that down so easily and not feel a yank in my stomach, no overwhelming emotion or feeling like I have failed. But that is how I can see how far we have come. Let me rewind back to 2002 and the birth of my first born. I fell pregnant when I was 17, gave birth a month after my 18th Birthday. I didn’t have much experience with babies as such, I was working for a bank in London prior to my pregnancy, none of my friends had children. I suppose this is part of the reason it took so long to get his diagnosis, and more importantly accept it.

I always knew he was different, but at the same time he was my first child and I shouldn’t of known any different. By the time he was 6 months I had made lots of mummy friends, I had attended those ghastly play groups, you know the ones where everyone tries to out-do the other mums with their accomplishments. The first sign for me was the lack of crying. I remember visiting ‘baby clinic’ to have him weighed, I saw the health visitor and told her I was concerned because he NEVER cried. I mean never. She told me other mothers would lynch me, and that he was obviously a content baby. As he got older he was full of beans, he ran before he could walk, literally throwing himself across the room. He had obsessional behaviour with spinning things, give him a walker and he would tip it up and sit watching the wheels spin for ages. His energy was non-stop.

It was only when he was about 1 that any health visitors became concerned about him. He was lively, always on the go but didn’t speak. I had health visitors telling me to speak to him more to encourage it, but I was and couldn’t understand why they didn’t believe me. He didn’t want to interact with me at all, he wasn’t an affectionate child, at one point I was sure he hated me.

Just before his second birthday I had my second child. He didn’t seem phased by it at all. There is one moment that I will never forget, the definitive moment that would change us forever. I was at baby clinic having my daughter weighed, and trying to make sure my son was OK. They told me to let him play and interact with the children (he never played with them, just along side them on his own thing). Someone opened the door to outside and he made a bee line for it. I was holding a naked newborn, and the health visitor ran like the speed of lightening to catch him. She came back and said ‘He doesn’t stop….he has no fear….he has so much energy, I think he has ADHD’. This was in front of the parents who looked at me like utter shit. I was just a young mum with two children, they had husbands and were past their 30’s. I felt alone and like a failure. I went home and cried.

I decided I didn’t need a diagnosis. I told the professionals that although my son was different, he just needed a bit more discipline. So I became tougher on him. Nursery had concerns about him, again I brushed them off. Yes he was different, but every one is different, right? I was angry at myself, angry for not having a child that spoke and interacted. I was angry that I must of failed somehow, and that it was all my fault. Most of all I was angry because no one could see the amazing child I knew he was.

Then at 4 years old he started school. One thing about him is that he has no fear. He ran off into school with even looking back. A week into his schooling and the teacher pulled me aside ‘He is naughty, he doesn’t listen, we sit him on the naughty chair and he keeps moving’, I said ‘Well he is probably bored, he is an energetic child who doesn’t like sitting still’. She asked me to not bring him back the next day. I was distraught, yet again I blamed myself.

So I went home and thought about it. I had been driving him 45 minutes each way to go to this school with a good ofsted rating, yet there was one 2 minutes away which didn’t have such a good ofsted rating. I decided to go visit the school. I told them that I had moved into the area (this wasn’t a lie, it was just a few months earlier). I decided that if this school also had a problem with him, then there was a big issue I needed to address, although I was unsure how to even start.

A few weeks later and the teacher pulled me to one side. ‘We have issues’ she said ‘I really think there is something underlying that isn’t helping him to learn and succeed.’ and they referred him to a specialist team. It was the first paediatrician we saw that gave him the ADHD diagnosis, followed by a team of specialists who gave him the ASD and lax ligaments diagnosis. I have heard many stories of parents who were upset by the diagnosis, but I wasn’t, it didn’t change who he was, if anything it helped because it proved it wasn’t my fault and that I wasn’t just a bad parent who had failed.

After that diagnosis the hard work began, I researched, I read every book I could, I looked into therapies, and most importantly I threw all my energy into getting my son the best education I could. It wasn’t an easy road to go down, ‘statementing’ can be a long and drawn out process, but I was relentless, and was pleased that he was awarded 20 hours funding from 2010. To give you an idea of how long this process took, it was after he had been at school for 4 whole years that I got to hold that piece of paper that said they would help him. I would like to say that was the end of the story, but anyone who has a child with ASD will tell you that everyday a new battle begins, and often very unexpectedly. I had to fight the school, even recruit legal advice and a private tutor to show the council that the school were not giving him the hours he was entitled to, they were lying about his attainment levels.

But then there was home life. Looking after him every single day, making sure he is happy when often he is sat in silence, in his own little world. Trying to crack through that shell is something I am still not 100% sure how to do.

Here we are 2015, five years after the statement and my son has started mainstream Secondary School. He has been there since September 2014. It was a massive leap for us all, giving him the responsibility to do more, have freedom he wasn’t used to. My first and main concern was that Secondary isn’t ‘locked down’ like primary, if he wants to leave he can walk out with no one to stop him. As the parent who has been called repeatedly to attend primary school when he was tried to run off, is sat up a tree refusing to move, or even under a desk in the classroom, I was so anxious some harm would come to him. But Secondary school ‘seems’ to be the best thing he has done, he has grown into something amazing, his teachers speak fondly of him and a few even adore him. I wonder if it’s the short lessons and moving around a large school which helps, being stuck in a primary school classroom for 6 hours with the same teacher was just not for him. When he started secondary school his reading age was on par with the average 6 year old, with the intervention that the ‘SEN’ department have given, he is now on level with the average 12 year old, all in 9 months. That boy never fails to amaze me.

I have no idea what the future will hold for him, or for us as a family. People often ask me if he will ever have a ‘proper job’ or if he will learn to drive, but the reality is, I have no idea. I have learnt not to worry about that, take each day as it comes, it’s all we can do. I have often wondered what 5 years difference would make, but then I look back at the last five years and I never expected us to be where we are now.