April is Autism Awareness Month. As the mother of an autistic child, awareness for me is more about acceptance and understanding. What is autism, what does it mean for the autistic individual and their life as well as the impact to their family. I will be writing a number of blogs during April with an autism theme.
What is Autistic Spectrum Disorder?
I thought it would be good to start with understanding exactly what Autistic Spectrum Disorder or autism is.
Autism is a complex neurodevelopmental condition that affects how people see the world and interact with other people. It is a spectrum and lifelong condition. This means that all autistic people share certain difficulties, or traits, but how they are affected by these will differ from person to person. All autistic people will learn and develop.
There are two common characteristics or traits of autism.
- difficulties with social interaction and communication and
- repetitive behaviours, routines and activities.
What does difficulties with social communication mean?
The autistic person may have difficulties understanding and interpreting verbal and non-verbal body language. They may not understand facial expressions, tones of voice, jokes and sarcasm. They may take things literally. For example, I remember commenting “it’s raining cats and dogs” and my son going to the window and telling me “Mum, I can’t see any cats or dogs”.
Some autistic people will struggle with verbal communication and use other forms for communication such as sign language or visual symbols. Others will have good language skills but not understand the expectations of others within conversations and may repeat what the other person has just said (called echolalia) or talk at length about their own interests.
I have had many “conversations “ with my son where he is talking at length about something he’s interested in and will answer my question without pausing for breath and then continue talking about his subject. People who don’t understand this find it very irritating.
What does difficulties with social interaction mean?
Autistic people may struggle with social interaction as they find it difficult to read people such as recognising and understanding emotions, facial expressions and body language. They may also struggle with expressing and understanding their own emotions. They may also find it difficult to make friends.
Therefore social environments may be difficult as they can be viewed as insensitive, appear to behave strangely or appear socially inappropriate. On occasions they may remove themselves from large gatherings to seek time alone. I remember being in tears from hitting my head and my son commenting that my face was wet. He did not recognise that I was upset and crying.
What does repetitive behaviours, routines and activities mean?
Autistic people can find it difficult coping with the uncertainties and constant change of daily life. Having a daily routine can help them understand what is going to happen and what is expected from them. Change can also be issue for autistic people.
For example, my son likes to have a structure to his day so that he knows what’s expected of him. We even have structured weekends otherwise he is unable to function and becomes very anxious. When we know something is going to change, such as going on holiday, we start talking about it 10 days before. This allows my son to understand what will happen, in what order and have as much details as possible. This may also include looking at places on the internet so he knows what they are like before we arrive.
Many autistic people also have special interests. These can become intense and all consuming. They may change over time. Over the years my son’s special interests have included dinosaurs, space, Lego and minecraft to name a few. He has become immersed in each interest and has to know everything that he can about the subjects. On the plus side I have learnt loads too.
How common is Autism?
Autism affects approximately 700,000 people in the UK across all nationalities, cultures, religions and social backgrounds. Autism appears to affect more boys/men than girls/women. It is thought that girls/women manage the condition differently and are therefore undiagnosed.
What causes Autism?
The exact cause of autism is still being researched. Research, so far, suggests that autism is caused by a combination of factors such as genetics and environmental. There is no cure for autism.
How do autistic people view the world?
Some find the world overwhelming which causes them considerable anxiety and stress. Some people struggle with understanding and relating to people, taking part in daily family life such as school/work, family life and social activities. Others may intuitively know how to communicate and interact with others.
The hidden disability
Autism is a “hidden” disability and parents of autistic children often comment that other people only see a child behaving badly or having a tantrum and comment on about a naughty child or bad parenting. I have been on the receiving end of similar comments when my child was younger. It is heartbreaking.
In my experience people often assume that all autistic people are the same. When my child started primary school and experienced issues from day one, I remember the head of the school saying to me “… we have another autistic child in the school and he doesn’t behave like this”. I would ask you to remember that each autistic person is an individual and as unique as you and I.
As Dr Stephen Shore, professor at Adelphi University said “If you’ve met one individual with autism, you’ve met one individual with autism”.