Sarah and her family

What does autism mean to you? – #AutismIs

Today’s World Autism Awareness Day. Ambitious about Autism are marking the day by asking people to share what autism is to them (using #AutismIs).

Sarah Pounder, who’s written about the realities of bringing a child up with severe autistic spectrum disorder, has written a guest post for us about what autism means to her:

JamesMy son James was given an official diagnosis of Autistic Spectrum Disorder at three years old. He is severely affected by this condition. He also has a diagnosis of sensory processing disorder, Attention Deficit Hyperactivity Disorder (ADHD) and severe learning difficulties. I want to be brutally honest with you when I tell you what Autism means to me.

Autism is a long journey

Autism to me is a long journey of ups and downs, it’s been very tough, it has given me a lot of worry and heartache. James stopped waving bye when he was ten months old, he lost all imitation skills and and his eye contact was non existent. He wasn’t interested in people, he appeared to be in a world of his own. It was like he was under thick ice and I couldn’t get through to reach him. He had explosive tantrums of lashing out and he also self harmed. I had no experience of autism and even the professionals around us were no better. They couldn’t provide us with any coping strategies that worked with challenging behaviours. He was nearly five years old and he was still in nappies and he couldn’t speak.

Autism can be frightening

When you are a parent of a child with the condition of severe autism it can be a frightening experience. I have felt alone and desperate with no where to turn. I found an early intervention therapy known as Applied Behavioural Analysis (ABA therapy). The therapy left me astonished – the progress that he began to make came thick and fast. They got him out of nappies within six weeks, they did intense speech programmes that got him to talk and they even taught him how to wave bye, bye again. They also gave me sound advice and strategies to cope with James’ self harm behaviours.

Autism meant a battle for the right support

Our local education authority fought us in tribunal,they were against the therapy and thought that their preferred school could meet his needs, even though they knew that he had previously attended their school for two years and made no progress. All they wanted to do is save money. We lost in high court and he went back to the local authorities special needs school, he was there for a further three years and the progress that he made was non existent. James is eleven now and has since started in a new school in September 2014, and he currently has a full-time ABA programme, you guessed it the progress again is so apparent even in this short space a time. His language and understanding is getting better everyday, he is starting to write his name and he is really happy. His dad and I are really happy too, this therapy has given us real hope for James and his future.

Autism has made me stronger

I know that I have said some negative things about James’ autism and I want to leave you with some positive words of what autism means to me. My son has been one of my biggest teachers in life his autism has taught me a lot, he has opened my mind up to many different things and helped me grow as a person both spiritually and mentally. I feel my experience of autism has made me a better, stronger person in a lot of ways; it has taught me not to judge others, have more understanding and patience and to be more compassionate towards others.

Autism is surprising

One thing that I really want to say is this, please never give up, always have hope and do not stop until you get what your child needs. These children have great potential with the correct help and support and like James he surprises me everyday and I now feel like the possibilities are endless.

Join Ambitious about Autism for #AutismIs 2015.