This week’s Special Feature explores some of the issues involved in educating children with autistic spectrum condition (ASC). It tells the remarkable story of one mother who, in her desperation to get an education for her two sons, opened her own school…
Autism is a way of life for Anna Kennedy. Her two sons are both affected by the condition, but in very different ways.
Patrick, now 18, has Asperger syndrome and Angelo, aged 15, has autism and epilepsy. Patrick was diagnosed at age four, but his mother was not told until three years later. Angelo was diagnosed at age three.
After diagnosis, Anna was given little information, and no indication of where she could get support.
She said: “No one actually sat down with me and said ‘this is what autism is…’ or told me what was best to do. I was very frustrated. I didn’t know if it would affect his life expectancy or anything. I used to just pick up the phone and cry to my mum.”
Patrick attended mainstream school, but Anna found it almost impossible to get him there every day. She even had car accidents after he grabbed the steering wheel on the way to avoid school.
She explains: “He found it very difficult. He had sensory problems. He couldn’t cope with loud clapping or the scraping sound when children push back their chairs.
“He was convinced he was stupid. He would make his lunch last the whole hour so he didn’t have to go out to play because he couldn’t cope with unstructured time.”
Anna was discussing her experiences with an audience of social workers and other professionals at the Community Care Live 08 Children and Families exhibition earlier this month.
She has also written a book, Not Stupid, from which she read an extract in which Patrick recalls his time at mainstream school: “I felt different from the other kids and I remember kicking off because I didn’t want to go to school.
“I had tantrums. I made up excuses so that I didn’t have to go to school. I remember drawing pictures of myself blowing up the school.”
After three years Anna took Patrick out of the school. She tried 26 different schools in the area, some of which were special schools, but their complex needs and difficulties with catchment areas meant she could not get either of her children a place, so they remained at home with her for three years.
She says: “I was feeling desperate about Patrick and Angelo not having a proper education. I wanted them to go to school and have a normal life.”
She found a disused school that had been used for children with disabilities, committed to £1,000s of refurbishments, and with help from other parents opened it for children with autism.
Hillingdon Manor School now has 86 children, and has branched out into provision for adults with autism, and supporting parents in the home. It includes speech therapy, occupational therapy and other therapies, as well as an accessible curriculum for its autistic pupils.
The school’s principal Gail Pilling, explained some of the issues involved in educating children with autism: “One problem with the label is it tells you absolutely nothing about the child.
“When we think what we need for autistic children, we need to think which child we are talking about.”
She explained that although Anna’s two sons both have autistic spectrum condition (ASC), they are very different.
Angelo can use words but avoids them, preferring other means of communication, while Patrick has a very good vocabulary, enjoys playing with words, but will take them literally, e.g. if a teacher asks him what he is doing he will tell them, not understanding that what the teacher means is that he should stop what he is doing.
Gail explained that a diagnosis of ASC means a child has a social communication problem, that it is a lifelong condition which children will have from birth. It is not a diagnosis of intelligence, nor does it mean that the child has learning difficulties, although many do.
She listed three components which children can have in different proportions:
1. More or less sensitive than others to sounds, visuals, smells and touch; some have food issues – e.g. might only eat pureed foods.
2. No ability to see ‘the bigger picture’ autistic children see detail in the foreground, while everyone else sees it in the background – they therefore notice the smallest changes, making their lives very unstable.
3. Executive functioning – their ability to balance different tasks is different to a ‘normal’ person.
Anna and Gail called for better training for teachers and other professionals working with children with autism, as well as early diagnosis, more support for parents and early intervention.
They believe that many children with ASC can cope in mainstream school, although a lot cannot.
Anna’s son Patrick is now attending mainstream college. She told the social workers in the audience: “Give parents as much support as you can. I think the key is consistency and for the parent to work with the school.”
