CHAPTER 1 - WHAT IS AUTISM?

I said from the outset that I didn't want to give you lots of theory, but a little bit of theory is unavoidable, and I want to make sure we share a basic understanding before I get on with the rest of the book. If you are already familiar with what autism is, then you may want to just skim quickly over this chapter. I'm going to keep it brief though. You may also know that there are changes coming in the criteria for diagnosis - I'm not going to talk about that here as it won't affect what this book is about.

Autism is a life-long developmental disability that affects a person's ability to communicate and to make sense of our social world. The condition usually appears before the child is three years old. People with autism often also have learning disabilities, but a minority have normal or even high general intelligence. Boys are 4 times more likely to have autism than girls.

As with many things in life, the term autism covers a wide spectrum. In fact the term that is often used instead of autism is "Autism Spectrum Disorder" (ASD), which recognizes that whilst there are things in common amongst people with a diagnosis of autism, that it also covers a wide spectrum. This spectrum includes children who are non-verbal and are very withdrawn, as well as those who are very able but are perhaps perceived as a little odd by others.

How Common Is Autism?

Although the figures vary slightly depending on whom you ask, over recent years the reported prevalence of autism has steadily risen. According to the CDC (Centers for Disease Control and Prevention) in the US, about 1 in 88 children are now identified as having an ASD. The figures in other countries average out at about 1 in 100. This makes it one of the most common conditions, yet one that is still largely misunderstood.

The Triad of Impairments

People with autism have difficulties in three areas, known as "the triad of impairments":

• social interaction - difficulty in relating to others;
• social communication - difficulty in understanding, acquiring and using verbal and non-verbal communication;
• rigidity in thinking - difficulty in being flexible and generalizing learning.

Autism affects individuals to varying degrees and as we have said this is reflected in the term "Autism Spectrum Disorder". The difficulties in each area of the triad of impairments may be expressed in different behaviors, e.g. the difficulty in social interaction may be expressed in terms of aloof behavior, where the child will have little to do with others, or as over-familiar behavior, such as touching strangers in the street.

Let's look at these three areas in turn.

Social Interaction

For most of us interacting with others is natural, easy and enjoyable. We learn many of the unwritten social rules without anyone having to teach us. We are able to read facial expressions, intonations, body language and make a good guess at other people's emotional states and motives. In short we are pretty good at reading social information. And because it has been so important for us to do all this as a species, we have developed areas of the brain dedicated to doing much of this for us unconsciously.

However, children with autism find interacting with others much more difficult. Research indicates that the brains of people with autism are hard-wired differently.

"A raised eye-brow could mean a million things," said the hero in The Curious Incident of the Dog in the Night-time.

Most of us would instantly know what a raised eye-brow might mean in a given situation. However, children with autism don't process social information automatically, they have to try and work it all out - all this conscious processing can be exhausting, and having to "do social" for too long can lead to problems.

Difficulties around social interaction include:

• not understanding the unwritten social rules, e.g. around friendship;
• appearing to be insensitive because they have not recognized how someone is feeling (or don't understand how they should react);
• not understanding other people's intentions;
• not being able to predict other people's feelings and reactions;
• becoming aloof, distant, or uninterested in other people as a result;
• not seeking comfort from other people;
• behaving strangely or inappropriately - because of not understanding what is appropriate in different social situations.

Social Communication

All children with autism will have difficulty with communication by definition. However, the way that difficulty is expressed is very different for each individual, at the most obvious level some children are non-verbal, whereas others are highly verbal.

A non-verbal child obviously has difficulty communicating. However, even a child who has lots of language may not be able to use it to communicate effectively. I recently read a story posted on the Autism Sparks Facebook Page that illustrated this point all too well:

A mum shared a story about her 11 year old son whose appendix was leaking into his pelvis. Despite being, in mum's words, "eloquently verbal", he was only able to tell her that his tummy was sore. Luckily, they were at the hospital for an appointment for her daughter and she took him over to the Emergency Room. The doctor said that the appendix must have been painful for at least 6 weeks!

Difficulties with social communication include:

• difficulties understanding language;
• difficulties producing speech;
• unusual patterns of speech;
• repeating words or phrases;
• referring to self by name;
• not understanding the point of communicating;
• not pointing out things of interest to others;
• not understanding tone of voice, facial expressions, body posture, gesture, body distance, and volume of speech;
• not being able to read the signs that tell you whether to continue talking or to stop;
• the tendency to take language literally, which makes it difficult to understand jokes, sarcasm and figures of speech.

Rigidity in Thinking

This last part of the triad used to be called imagination, but I prefer the term Rigidity in Thinking. It's not so much that children with autism can't imagine, it's that their thinking tends to be more rigid, less flexible; and this rigidity in thinking has far reaching consequences.

Difficulties include:

• having narrow interests and obsessions;
• having to have things a certain way - e.g. all the doors need to be shut;
• having to do things a certain way;
• finding it hard to predict and anticipate;
• poor generalization of learning.

Being able to generalize our learning is something that we take for granted. We can take the skills or information we learn from one context and use it in another. However, children with autism tend to find this much more difficult, and this is something to be aware of when teaching your child a new skill.

We all find change difficult at times, but a child with autism may experience this difficulty at a completely different level, because they can't see the change in context. For most of us, having to take a detour is an inconvenience, but to a child with autism it may induce anxiety, because now he is not sure where he is going, or he feels out of control.

We all have a need for certainty, and when we don't have it, we start to create it as best we can. A child with autism may insist on creating order in the parts of the world that he can control, because he is mystified by much that is outside his control.

Structure and routine can help to support a child with autism, as it provides a safe familiar framework for learning to occur within.

Sensory

Individuals with autism often also have sensory difficulties, which may include hyper-sensitivity (being over sensitive), and/or hypo-sensitivity (being under sensitive) to any of the 7 senses. That's right, I said 7! We've all been taught about the 5 senses since we were kids, but there are 2 more senses that you may not have heard about and need to be aware of: the vestibular sense (the sense of movement and balance) and proprioception (the sense of body awareness).

If your child is always on the move and likes to spin, it may be their vestibular system is hypo-sensitive - and they are seeking out those sensory inputs. Conversely, if your child dislikes having their feet off the ground and hates spinning and jumping, may be their vestibular system is hyper-sensitive. And if your child bumps or trips over people and things, or looks at their feet when walking downstairs perhaps their sense of body awareness is hypo-sensitive, whereas if they don't like other people being too close they may be hyper-sensitive. Their behavior may be a way of getting their sensory needs met.

Many individuals with autism report sensing the world differently to how most of us experience it. These different sensory experiences can have a major impact on the life of somebody with autism and it is something that we need to be aware of.

Your child's behavior will give you a guide...