Katie and Samuel. ‘We cope with his anxiety day by day’

I am a parent like many of you. I have two beautiful boys: Jonah who is 5 and is in reception at school and Samuel who is 7 and autistic.

There are many parents of autistic children like us and we remember two dates. The first was the day I realised that there was something different about Samuel. He started life as a happy toddler who reached all major developmental milestones, but aged 2, his behaviour changed and the little speech and skills that he had began to disappear. Life stops… you realise Samuel’s life will be different to other children’s and then a different life starts again. I felt so guilty as a mother as I saw Samuel disintegrate and did not know what to do.

Can you imagine feeling written off, dismissed as the naughty boy at playschool, feeling so overwhelmed that you scream every day, hit out, hurt yourself, and are unhappy and stressed all the time? Can you imagine being the mother of that child that everyone thinks is naughty? I would hide behind cars to avoid other parents, avoid eye contact. I am the parent of that unhappy child. There is so little sympathy for an autistic child. When your child is at their most misunderstood and lost – that is when it seems society cares least.

The other day I’ll never forget was when we finally got Samuel’s diagnosis just after midday on 1st September 2011. Once we got the diagnosis, it was the lowest ebb of my life: we were still alone. It’s like you finally get the cupboard open but it’s bare. We were offered an Early Bird course – like NCT without the happy ending. There were no answers. The only advice was: manage your situation; if your child can’t cope cancel Christmas; no hope was offered.

I love Samuel with all my heart but there is a burden of being a parent of an autistic child that many will not know about – his needs change all the time and we are constantly researching to see how best we can support him. How we can get over the fears and anxiety where unexpected noises, smells or other people’s behaviour can make even the shortest of outings an extremely stressful and upsetting experience. Sometimes it’s far easier to stay in the safety of our house. And that’s not healthy for any of us.

It took us two years to get Samuel the right support. The challenges were endless. We had to give up on the system and start finding help ourselves. We met with so many specialists and none of them had any insight or help for Samuel. I cannot imagine another condition or disability where the professionals have nothing to offer families. My husband Will is always looking for potential treatments which have been proven, but they just aren’t there, and I feel forced to try things out because we feel desperate. So many parents like us are reduced to trying unproven treatments on the say so of other parents.

It’s a daily struggle but we are coping – by meticulous forward planning but also by taking each day as it comes. While Samuel is small it’s easier, but as he gets older, bigger, stronger I can see it will be harder. I worry about what will happen when he is older and starts to realise he is different – I am sure that will bring a whole host of other problems, and I am sure his anxiety, without any help, will get worse. What I can’t bear to think about (but do constantly) is what will happen when I am no longer around. I just hope that research by then has made progress, so that we have tools and therapies that can help him cope by himself.

Katie talks about her son Samuel and the fears and anxiety that come with his autism and mean that the world is an overwhelming place.