What is autism?

Autism Spectrum Disorder (ASD) is a developmental disorder caused by differences in the brain and it affects how a person communicates with and relates to other people. It also affects how they understand and make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. To date autism has been more common in males than females but we are getting better at detecting the profile of girls with autism, as they can present a little differently to boys.

It is important to remember that the cause of ASD is not yet known. Most evidence points to a combination of environmental and genetic factors. It is known however, that ASD is not caused by parenting styles. Parents of children with ASD are just like everyone else. ASD is prevalent in all cultures and all backgrounds. It is also proven that ASD is not caused by vaccinations.

A child with ASD has difficulties in the following areas:

1. Social communication and interaction.

• Has difficulty making friends and keeping friends
• Can be interested in others but often only in order to have their needs met
• Possibly be affectionate but on their own terms and not always at the right time or place
• Lack motivation to please others
• Be friendly but with odd or unusual interactions
• Have little or no understanding of unspoken social rules
• Have limited interaction, particularly with unfamiliar people or in unfamiliar circumstance

2. Rigidity and repetitive type behaviours

• Using toys as objects or in a repetitive way
• Whirling wheels of toy car or very focused on looking at the small parts of objects in a particular way
• Inability to play or write imaginatively or only in relation to one area or interest
• Resisting change – e.g taking a different route to school
• Playing the same game over and over – sometimes based on a video or television character, but unwilling to follow others’ ideas
• Learning things easily by rote but with limited understanding
• Inability to see things from other’s points of view
• Following rules rigidly and not understanding exceptions
• Limited ability to predict what will happen next or to recall/re-use past experiences
• Develop stereotypical body movements (e.g flapping hands, some may rock back and forth)

What should I do if I am concerned?

Having your child diagnosed with autism is a huge turning point in a long journey for you and your family. For some it may be a relief to have a name for something that they have been trying to make sense of for a long time. However, for most people this is mixed with sadness and perhaps feelings of loss or anger, and many struggle to come to terms with such a diagnosis.

Whatever you feel, know that the concerns you have had for your child are valid and you can now begin to prepare yourself and your child for the new journey ahead and new dreams. It is also important to remember that you are not alone and that thousands of parents are sharing this journey with you. Seeking support or even chatting to other parents of children with an ASD will enable you to share your experiences, cope with your child’s diagnosis and plan for a bright and happy future.

How do I get my child assessed for ASD?

If you are concerned you should seek advice on getting an assessment from your local paediatric/disability service through your GP. If you are going privately for assessment you should seek advice on making sure they follow the NICE guidelines on assessment for Autism this means they should use standardised measures such as the ADOS 2 or BOSA, ADI-R and/or an in-depth interview with you about your child’s developmental history. They should observe your child and ideally talk to their educational provider to get a good understanding of their presentation in more than one setting.

What do I do if my child has just been diagnosed?

It is normal to have a range of reactions following a diagnosis of ASD, from relief to anger to devastation. Know that the diagnosis has not changed your child in any way but given a language to better understand their needs. In fact, the earlier the diagnosis is made the more specific support the child can get to help them manage any difficulties they have and help them to reach their potential in school with the right supports. It is helpful to join a parent’s group, or forum following a diagnosis to chat with other parents going through a similar process. However, it is also important to know that no two children with ASD are the same and therefore what another child is struggling with in the future or currently may not be the same for your child. Talking together with your partner is also important as you may both have different ideas of what the diagnosis means for you and your family. Take the time to process the information and ask questions and seek support from local services when needed.