What one 'ASD mum' wants you to know

Juliet was diagnosed with ASD at age three, when this photo was taken.
Juliet was diagnosed with ASD at age three, when this photo was taken. 

Kristen is mum to six-year-old Juliet, who was diagnosed with autism spectrum disorder at age three. She lives in Sydney and blogs about life with her daughter. Here she shares her experiences of getting an ASD diagnosis.

April 2 is the U.N-declared World Autism Awareness Day, a cause that is near and dear to my heart thanks to one beautifully quirky six-year-old girl – my amazing daughter, Juliet.

One of my motivations for being so open about our family’s experiences is to help put a human face on a condition that is often plagued by stereotypes and misinformation. At the same time, I’m particularly passionate about helping other parents recognise some of the most common red flags for ASD, and encourage them to check it out if they have any concerns about their child’s development.

A quick refresher on the basics:

Autism spectrum disorders (ASDs) are neuro-developmental disorders characterised by:

  • Delays or differences in communication (both verbal and non-verbal)
  • Differences in social interactions (relating to other people and sharing emotions)
  • Routines and repetitive behaviors  

Quite often, people with ASD also have sensory sensitivities.

The autism spectrum includes autistic disorder (classic autism), Asperger’s syndrome, and the awkwardly titled pervasive developmental disorder - not otherwise specified (PDD-NOS), which is diagnosed when the full set of criteria for either autism or Asperger’s syndrome isn’t met. Sometimes the term “autism” is used to refer to all ASDs.

The very latest figures from the U.S. indicate that one in every 88 children – 1 in every 54 boys – has been identified as having an autism spectrum disorder. ASD is now the most common developmental disorder in Australia. If you don’t have a loved one with ASD in your own family, I can guarantee your children have schoolmates on the spectrum. They’ll likely have friends on the spectrum. They’ll work with people on the spectrum. And, someday, they might even have a partner or a child on the spectrum. ASD is that common.

It’s called a spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically. Symptoms may go unrecognised, especially in mildy affected and/or gifted children, or when more debilitating conditions mask them.

Just as every child with ASD is very different, every family’s experience with ASD is different. I can’t profess to know what it’s like to parent a child who is severely affected by autism, but I can share something that seems to be a common thread for all of us with kids on the spectrum: the emotional journey of coming to terms with a new reality that includes autism.

When I first started worrying about Juliet’s development, at about 12 months, autism was nowhere on my radar. What little knowledge I did have was based on having seen the movie Rain Man. Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she was a happy baby who loved to engage with me and her dad. Why would we need to be worried about autism?

In hindsight, Juliet actually showed several signs of ASD as a baby and young toddler, but I failed to recognise them. I had niggling worries that something was amiss, but no-one seemed to share my concerns.

Sean, her dad, thought I was overreacting in stereotypical first-time mother fashion. “She’s fine. She’s just not an extrovert like you.” Well-intentioned friends and family comforted me with, “Don’t worry. All kids develop at their own pace” and “Of course she’s a bit different… just look at her mum!”

Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and lack of interest in other kids. “A lot of parents would love to have a two-year-old who can read! Look how well she engages with adults.” A few loved ones did have concerns, but they were hesitant to say anything for fear of freaking me out. I clung to these reassurances as the reason not to probe my concerns any further.

Finally, two very brave friends approached me and suggested that we have Juliet assessed for ASD by a specialist. It was the very first time that anyone had even suggested that Juliet might be at risk, and the more I read about ASD, the more I saw glimmers of Juliet. I was overwhelmed with fear and grief. Meanwhile, Sean remained totally unconvinced that his darling daughter could be on the spectrum (both common reactions, I later learned).

The lead up to Juliet’s assessment was a very stressful time, but getting her diagnosis (of PDD-NOS) ended up being a blessing for our entire family. Most importantly, it made both me and Sean realise it was real. Juliet wasn’t going to magically grow out of it or develop certain skills by osmosis. It was going to take a tremendous amount of hard work – by us and by Juliet – to help her build the core skills she would need to make her way in the world.

Early detection led to early intervention, which can be critical in improving outcomes for kids with ASD. Juliet benefited from two-and-a-half years of outstanding, very intense early intervention before she started school. We’re extremely fortunate that she responded so well to it and that we still have some terrific professionals guiding us. Many equally deserving families don’t have this type of support and are doing the best they can with limited resources. It’s a travesty that, in many states and countries, timely intervention and support services for people with ASD are so often tied to their family’s ability to pay the steep price tags, if those services exist at all!

Juliet’s diagnosis compelled us to search very hard for a school with a strong track record of inclusion and familiarity with ASD (when one popular local school indicated “Oh, we don’t have any children like THAT here” we quickly crossed them off our list!). We’ve also had the privilege of connecting with a large network of ASD families who have been a great source of friendship, information and inspiration over the years.

When we first started out on our ASD journey, I couldn’t see past the term “lifelong disability.” I didn’t want my child to be different. Over the years, we’ve come to accept autism as just another part of our family’s “normal.” Even though it’s still tough to watch Juliet struggle with things that come so naturally to other kids, and even though some people will still make assumptions about her based on stereotypes and misinformation, our focus these days is on nurturing and celebrating Juliet’s amazing “differing abilities.”

The world needs people who see things through an unconventional lens, and our job as Juliet’s parents is to make sure she has the confidence and core skills she needs to shine on her own terms. ASD doesn’t define our daughter, but it’s an important part of who she is, and we’re proud to embrace it. Now we just want the rest of the world to do the same!

If any of you reading this has concerns about your own child’s development – be it suspected ASD or some other potential issue – I hope our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain. Please help me spread that message.

Read the signs of ASD on the Raising Children Network website.

You can talk to other parents about raising a child with ASD and other disorders or disabilities on the Essential Baby forum.

I didn’t want my child to be different. But over the years, we’ve come to accept autism as just another part of our family’s 'normal'