How to find the way that works for your family if you have a child with ASD

Has been supporting people with autism spectrum disorder (ASD) for more than a decade. Here, she offers her expert advice to parents on how they can manage their child’s behaviours successfully

Since I first began supporting people with autism spectrum disorder (ASD) I have seen how this once relatively unheard of and talked about condition has gained public attention.

It has emerged from the traditional Dustin Hoffman “Rain Man” superficial understanding, to a much deeper awareness of what ASD can mean for a person and their family.

The changes to how people are diagnosed across a spectrum of need has been positive for services so that they can offer the right supports to families.

Nevertheless, in my experience being told your child has ASD launches a parent into a world of different and, at times, conflicting emotions.

There is confusing terminology and a plethora of professional appointments, whether it’s with paediatricians, speech and language therapists, occupational therapists or education staff.

At diagnosis parents are given lots of information. It’s explained that ASD is a developmental disorder that is lifelong.

It impacts how the child experiences the world and learns, and how they understand and use communication to make relationships with those around them.

Parents often think of lots more questions once their appointment has finished, or need to hear the answers again.

So, this is what most families ask me…

What caused this? There is no known one cause of ASD. A number of complex factors may interact and contribute. If you have someone with ASD in your family there may be a vulnerability for other people to be diagnosed, suggesting a possible relation within genetics.

Some studies are showing differences in the structure of the brain in a child with ASD so our understanding is emerging.

There is no proven link to food, infections, immunisations, medication or parenting styles.

Where is my child on the spectrum? I believe this is impossible to answer. Your child’s ASD may have significant impact on them at different ages and for different activities in their lives.

At primary school they may have a low level of need but this can increase as they progress to secondary school or vice versa.

Your child may be talking and learning but have significant emotional and behavioural issues that prevent them from being successful in using the toilet or sleeping.

There are many children on the spectrum where ASD is among other difficulties such as a learning disability.

I think it is best instead to consider what level of support your child will need for now.

What treatment, therapy or approach should I follow? Frustratingly, I will not be able to tell what will definitely work for your child. There is no cure.

I can, however, give you options to explore. Ultimately what works for your child with ASD and your family will not always work for the next.

I truly believe first you have to bring ASD into your life and home.

Make adaptations to your home and then tweak how you plan, talk and play all with understanding ASD and what ASD means for your child. It’s about minimising the impact of ASD and with that uncovering your child’s potential.

What should I do next? There is a never-ending list of suggestions, strategies and approaches to try out.

To make it easier and more meaningful to your day-to-day life it can be useful to think about them linked to areas of your home.

To get the help you and your child need it is vital to understand your child’s strengths and weaknesses. Spend time learning about ASD and what this means to your child. Depending on how you like to learn, this may involve attending a course or reading from a suggested book list.

Parents have told me it is important to join their child in the world that they are experiencing, getting on their level and trying to see, feel and experience the things as they do.

Join a group of other families and parents for general support.