When your child has a sore throat, you can give them throat lozenges, you can make sure they are wearing warm clothes, give them hot honey and lemon drinks – you can do all the things your parents did for you when you were a child. It does not matter if your child is at home with you, is with your parents or a childminder: it’s a familiar situation where we all know what to do.
Autism Spectrum Disorder is not like that. You can’t google what to do and get a clear, black and white answer, that will work with every child or young person on the spectrum. You can’t follow standard parenting responses to situations, e.g. time out, consequences for certain behaviours. It is not black and white. Every child is unique, and every household is different. Although there are core features of autism, they do not look exactly the same in every child on the spectrum. Autism is at the centre of it but the way everyone responds to the child affects how the child manages the features of autism spectrum disorder. We cannot see the child in isolation of their surroundings. We cannot see autism as separate to the environment or separate to the people involved in the child’s life. This is what makes autism dynamic, different in every single case, and what makes it hard to give black and white support that works for everyone.
When a child has a sore throat, we can treat it. Treating it might involve keeping the child at home, keeping them away from others who have colds, coughs and sore throats, but the focus of treatment is the child. In autism, the focus cannot just be on the child. It has to be on the child and the environment they are in, e.g. home, school, the classroom, play dates, family gatherings. Supporting a child with autism is a team effort and involves everyone adapting what they do, how they do it, etc. in order to help the child manage and reach their potential. Successful intervention involves everyone who has a significant role in the child’s life. There is no Calpol, no doctor to cure the condition.
When a child has a physical condition, e.g. a broken leg, no one questions support. They work out what the child needs and they adapt the environment, including what they do and say, to enable the child to succeed. Yet, this is often not the case with autism. When a child has a physical condition, we can see what they need and this makes it easier. However, when a child is on the spectrum, we can’t see what they need. We make assumptions in both cases that the child processes information in the same way that we do, that they see the world in the same way that we do, that they have the same wants, needs and interests, and this is a fundamental part of the problem. Our assumptions mean that we often do not put in place appropriate support. Not only that but we might misinterpret behaviours because we are viewing them through our own experiences.
I lived in Turkey when I was younger. It was not my first time abroad, but it was my first experience of living in another country. This is a very different experience to going on holiday. When you go on holiday, you don’t learn much about the culture. Everywhere you go, people want to please you, make sure you have a good time. Many hotels, restaurants and bars could be in England, so it often feels essentially the same as being at home, but hotter. However, when you live abroad it is a very different experience. When I lived in Turkey, I did not know anything about the culture. I had not even thought about the importance or impact of culture. I found it really hard initially and I upset quite a few people by behaving in a “British” way in a very different culture. I had to watch and learn about the culture in order to fit in and develop relationships and live there happily. It was not instinctive. How could it be? It is a very different culture to my own. Culture is invisible. Culture is the characteristics, beliefs, social habits, etc. of a particular group of people. It is unique to that group. We looked the same, but we did not think the same and I had to work hard to understand our differences, and adapt to fit in. I sometimes think about autism in this way. I need to understand what it is like for a person with autism and then think about what I need to adapt to help them.
Situations can get very difficult when we go head to head with a child/young person on the spectrum. We want and expect them to do things our way, but often they can’t, they don’t. They don’t experience things in that way. They are not neurotypical, but we do not always keep that in our minds. Changing what we think, say and do can change everything. It is not easy. It is not what we expected to have to do. However, it makes a huge difference.
For example:
1. We know that auditory processing is a weakness and visual processing is a strength.
What does this mean?
- This means that it is hard to remember and understand what people say when they talk a lot. It also means that this can be a stressful experience. A child/young person can feel overwhelmed by language and have no idea what they are supposed to do, which can increase stress levels.
- We know that auditory processing is often slow in autism spectrum disorder and processing individual speech sounds can be difficult. Temple Grandin, who is a professor, author and speaker in America, and is on the autism spectrum, said that when she was a child, she could not process the consonant speech sounds when adults spoke. As result, she could not understand what they were saying. She thought they spoke in a different language to children.
- We assume that children and young people on the spectrum process information in the same way that we do, but we should not assume this.
2. We know that working memory is an area of difficulty in ASD.
What does this mean?
This means that it is hard to hold information in your short-term memory, e.g. the answer to a question, something you think of during a conversation and want to say but you have to wait until the speaker has finished talking, a message someone asks you to pass on, an instruction.
What helps?
- Pause before you add more information so that you give time to process language
- Check instructions so that you know the child/young person has understood
- Think about the language you use, e.g. avoid/explain abstract language, avoid a fast rate of speech
- Use visual support ……….
I hear a collective huge sigh at this, a rebellion against visual support, a desire to stop reading this blog entry! Why? I think about this a lot, why do people struggle with visual support to much? Everyone uses visual support, we all write lists to help us remember what we have to do. Many people use a calendar or a diary. Many people use post it notes to help them remember things or write on their hand. So why do people react in the way they do to using visual support to help children / young people on the spectrum? I don’t actually know, but here are some guesses:
- It highlights the fact that your child is different
- It feels limiting, e.g. you can’t be spontaneous anymore
- It is hard work to plan, prepare and make visuals
- It makes your child stand out and parents worry about the stigma of ASD
All of these are totally understandable, but visuals can make a huge difference to a child. When I say visuals, everyone probably thinks of millions of symbols and Velcro strips, yes that is one form of visuals but it is not the only one. Visuals can be written, on the ipad, on mobiles, calendars, lists, diaries, post it notes – there is a huge range and variety.
How do we choose?
You need to consider:
- The child / young person’s age and cognitive levels.
- Why you need to use visuals, e.g. to make the child’s routine predictable, to break tasks into steps as planning and starting tasks is hard.
- What type of visuals the child wants – always include them in these decisions if you can. They will be using them, so we need their opinions.
- Your life as a family – what will realistically fit in with family life. You want it to be achievable and realistic, otherwise it won’t work.
Useful links:
http://www.autismtoolbox.co.uk/supporting-pupils/visual-supports/