What is Autism?
Autism or Autism Spectrum Disorder (ASD) is a developmental disability that affects the way a person communicates and interacts with the world around them. People with Autism find it difficult to process things and think differently to the average person. Autism is on a spectrum, meaning that it affects everyone differently depending where on the spectrum they lie. Some people with Autism are non verbal and have speech and development delays, and some people with Autism are extremely intelligent but have difficulty in social situations. No two people who have Autism are the same, and it affects everyone differently.
Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK – that’s more than 1 in 100. If you include their families, autism is a part of daily life for 2.8 million people
Parenting and Autism
As parents it’s only natural that we worry about our children. As they grow and become more independent we wonder, will they be okay? Will they survive in the world we know can be so cruel? It’s a concern for many parents, but especially parents raising a child with Autism.
One father who knows how challenging that can be is Sean Fleming, who offers us a personal insight in to the challenges that come with being an Autism parent to his teenage son…
‘I think it first became apparent that something was different before he was even one year old. There was something in the way he would get cross and frustrated by things. He was explosively angry. It was quite alarming. But when you aren’t actively thinking ‘autism’ you won’t necessarily see the signs; and we didn’t.
At primary school it became increasingly clear all was not well. My son was a very bright and intelligent boy but he struggled in social settings – the older he and his peers got, the more pronounced those struggles were. He clearly found being around other children quite stressful at times, and disliked the noise and the unpredictability of it, and because of this, he was finding it hard to make – and maintain – friendships.
34% of children on the autism spectrum say that the worst thing about being at school is being picked on
He became increasingly stressed and anxious and simply wouldn’t go to school. Every morning involved a protracted battle. He wouldn’t get dressed. He’d refuse to come downstairs. He’d do anything he could to delay the school run. We decided we had to get him assessed when he was about seven years old. We wanted to do whatever we could to make the transition to secondary school as smooth as we could. He was on the waiting list for an initial assessment for about two and a half years.
During which time everything got worse. He became more anxious about everything, to the point where he no longer wanted to go on outings to the zoo or the museum or what have you. By now I’d stopped working and was freelancing, so I could be at home more often and take charge of getting him too and from school. That seemed to help him a little. But it put a serious hole in my earnings.
He didn’t meet the criteria for a diagnosis. The criteria are very rigid, as I’m sure a lot of people reading this will know. So, he didn’t qualify for any additional support. His primary school was very supportive and did what they could to help and be flexible – providing him with a quiet corner to sit and work in if he needed it, for example.But it all went seriously wrong when he went to secondary school. By then we’d been preparing ourselves for the transition for several years, and there’d been several hand-over meetings between the primary and secondary school SENCOs.
17% of autistic children have been suspended from school; 48% of these had been suspended three or more times; 4% had been expelled from one or more schools
But we had a lot of problems with teachers not having read any of the notes they were sent about him, which meant rather than realise he was a boy struggling to cope, they just assumed he was a troublemaker. There wasn’t a single week without incident. Unnecessary detentions, tellings off in the classroom, and so on. Add to that the way he was singled out and picked on by other kids (there’s no one quite as efficient as spotting someone who’s a little different than a gang of school children) and the whole situation became untenable.
63% of children on the autism spectrum are not in the kind of school their parents believe would best support them
We ended up withdrawing him from school in the May of his first academic year there. He was being made ill. It wasn’t an easy decision. But it was the right one. He’s enrolled in a school that teaches via the internet (web conference style lessons). It’s enabled him to continue receiving an education, and to rebuild his confidence a little. But We all feel badly let down by the school and by several of the teachers in particular.
Child mental health services in the UK are under such pressure at the moment that resources are only being directed at the most severe cases. An awful lot of kids are being left without treatment. Not all of them are going to cope. Many will become very ill as they get older and will become vulnerable to other forms of neglect and abuse. It’s hard work having a child with autism, there’s no getting away from it. Although our experience is quite mild in comparison to other families I’ve met.’
While autism is incurable, the right support at the right time can make an enormous difference to people’s lives
Sadly Sean’s story is not a rare one, with plenty of parents echoing his sentiments up and down the country. The care and support just isn’t there, so much so that GP’s are urging children to exaggerate symptoms of mental health illnesses and disabilities to enable them to get treatment (Donelly, L, 2018). The Care Quality Commission said too many children and young people were unable to get any help until they reached “crisis point” amid widespread rationing of treatment.
That’s why I think it’s important to raise awareness for Autism, but not only that, to raise awareness for the people who care for those with Autism. Realising how hard it can be to raise a child with the challenges a disability or mental health brings is the first step to help reduce stigma. These children are not naughty or unruly, or uncontrollable. They have a lifelong disability and it’s hard enough to deal with that without the added pressure of ignorance from society.
So, if you encounter someone who is a little bit different, just be kind. By showing kindness and compassion it’s the first step in reducing stigma. Teach your children to be kind and accepting, and don’t be too quick to judge other parents because you never know what battle they are fighting.
Do you have Autism, or do you care for a child or parent with Autism? I’d love to hear your experiences. Let me know in the comments below!
Stats and information were obtained from The National Autistic Society
and the Telegraph.