There is a war going on in the world of autism.
School staff, other professions,parents and carers and people with autism, are all trapped between two main opposing camps.
Disabled children should be enabled to achieve their full potential
One sees autism as a tragedy, something that steals a child and destroys a family. For those who hold this view, the answer is to work intensively with a child as soon as they have the diagnosis to try and reverse the effects of autism and make the child as close to ‘normal’ as possible.
Sometimes more radical and intrusive interventions might be tried such as using chemicals to remove mercury from a child’s blood or giving children 100% oxygen in specially designed chambers; expensive treatments that cost families dearly. This camp might also campaign to raise money to find the cause and then a cure.
The opposing camp, however, thinks of people with autism not as tragic in any way but just as human beings who experience profound difficulty with working out how the social world operates. For this camp autism is a culture that needs to be enabled rather than something to be cured.
Money raised should be used to support people with autism and their families to help them achieve their aspirations, address their challenges and provide opportunities to engage in activities outside the home, enable access to employment and to independent living. People with autism should be enabled to lead fulfilling lives.
Whichever camp we decide to join has very significant effects on people with autism and their families. As the BBC television programme ‘The A Word’ demonstrates, when parents or other relatives don’t all join the same camp, a family can be left devastated. Clearly, deciding where to stand needs careful consideration.
Luckily the United Nations Convention on the Rights of Persons with Disabilities (2007) offers a useful structure to help us decide. But very few people know about this vital international human rights treaty that protects disabled people.
This needs to change.
We find ourselves in a state of war because autism is a complex concept that can be understood very differently by people. Children receive a diagnosis of autism if they are experiencing fundamental challenges in developing relationships with others and with understanding and using the social rules that many people seem to learn intuitively. These challenges can show themselves very differently in children.
One child with autism may not be able to use any speech to communicate whilst another child may keep talking so much that no one else gets a turn.
One child may appear to show very little interest in other people whereas another may be desperate for friends but not know how to make them. Like all children, those with autism are unique individuals with their own way of being in the world,personality, interests, strengths and challenges. It used to be said that many more boys would have autism than girls but now researchers argue we are just not as skilled in noticing when girls are struggling. Girls are said to be better at masking the problems they experience.
Autism isn’t diagnosed through any medical test. Rather it is identified by how someone behaves. Unsurprisingly people argue about what exactly behaviour might mean.
The UN Convention on the Rights of Persons with Disabilities is a vital international treaty that we need to make more use of in schools.
It is quickly located on the web and can perform the role of a useful checklist to help evaluate the school environment and teaching approaches to make sure they recognise and enable rights of all disabled children. The Convention affirms disabled people have rights just like everyone else. A duty is placed on schools and services to protect at all times the dignity of disabled children. They are not to be subject to, for example, waiting in wet clothes until a parent can come into school to change them or placed in situations that may result in children becoming highly anxious or distressed in front of peers.
Another protected right is that disabled children should be enabled to achieve their full potential as autistic young people rather than only being valued if they can get close to whatever others think of as ‘normal.’
Children have a right to have a say in what happens for them in school, something that similarly we are legally obliged to enable. So we have to think not only about which camp we might want our children to be in but also which they would choose. Education approaches must be respectful, motivating to pupils and build on their developing talents. Schools must also accommodate children’s specific requirements, such as staff using additional forms of communication.
A state of war is never helpful. Researcher Damian Milton has called for the two camps to engage in respectful debate so we might come to know more about how we all understand and respond to autism. In the same way space and time needs to be made available in schools so staff can question and reflect together on what their practice reveals about which camp they have made a stand with and the implications of this for pupils. Consulting the Convention would be an excellent place to start.
Nick is a Professor of Inclusive Practice at the Sheffield Institute of Education,Sheffield Hallam University. He is giving a lecture on developing arights based agenda for autism on Tuesday March 14. Places are free but it is currently full. To join the waiting list visit Professor Nick Hodge Inaugural Lecture