April 2nd is the U.N-declared World Autism Awareness Day, and very significantly, April is Autism Acceptance Month, a movement that is powered by the autistic community. These efforts are especially near and dear to my heart thanks to one beautifully quirky 8 ½ -year-old girl — my amazing “Aspergirl,” Juliet (pictured in her favorite AC/DC outfit at age 3, when she was formally diagnosed with ASD).
Many of you have followed our family’s journey on the autism spectrum over the years, so you appreciate that every single day is about autism awareness and acceptance for us. I am so grateful for your support and hope you will continue to back this “Mamma On A Mission” by taking a few moments to (re)read this post and then passing it along to your friends and family.
One of my prime motivations for being so open about our family’s experiences is to help other parents recognize some of the most common signs of ASD and to encourage them to follow “When in doubt, check it out” if they have concerns about their child’s development. At the same time, I am equally passionate about putting a human face on a condition that is too often plagued by harmful stereotypes and misinformation. But first…a refresher on the basics:
Autism spectrum disorder (ASD) is a lifelong, neurodevelopmental condition that is characterized by:
- Differences in communication and social interaction (use of verbal and non-verbal communication; relating to other people and sharing emotions)
- Restricted, repetitive patterns of behavior, interests or activities
Quite often, people on the autism spectrum also have significant sensory sensitivities (hypo and/or hyper sensitive).
Autistic educator and advocate Nick Walker explains autism in a much richer way:
Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.
[His full, thought-provoking definition can be found here].
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), and Asperger’s Syndrome. These conditions are now under one umbrella term, called autism spectrum disorder (ASD, or sometimes just referred to as “autism”). It’s called an autism spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically.
The very latest figures from the U.S. indicate that 1 in every 68 children – 1 in 42 boys; 1 in 189 girls – has been identified as having ASD. Although the exact causes of autism are not certain, many experts belief that increased awareness in identifying and properly diagnosing children is significantly contributing to the rising rates. ASD can sometimes be detected by 18 months, or even before. By age 2, a diagnosis by an experienced specialist can be considered very reliable. However, many children are not formally diagnosed until much older, with some people not diagnosed until adulthood.
Just as every child with ASD is very different, every family’s experience with ASD will vary. Although I cannot speak for every parent, I can share something that seems to be a very common thread for many 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, as she was nearing her first birthday, autism was nowhere on my radar screen. What little knowledge I did have of autism was based on having seen the movie “Rainman.” Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she seemed to be a happy baby who engaged with me and Sean. She even made eye contact! Why on earth would we need to be worried about autism?!
In hindsight, Juliet actually showed several early warning signs of autism as a baby and young toddler, but we failed to recognize them as such. I had niggling worries that her development was atypical, but no one around me seemed to share my concerns.
Sean 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..” “She’s probably a genius. Einstein didn’t speak ‘till he was four…” and “Of course she’s different, just look at her mom!”
Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and the lack of interest in other kids. “A lot of parents would love to have a quiet 2-year-old who can read! ” A few loved ones apparently 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 she might be at risk, and as I read more about ASD, the more I saw reflections of Juliet.
The lead up to Juliet’s assessment was an extremely stressful time for us, especially since we also had a newborn baby at home. Sean was in denial about Juliet’s issues and was very reluctant to have her formally assessed, while I fretted about burdening her with a “label” at such a young age. Little did we know that these are both very common reactions.
Receiving Juliet’s diagnosis – a provisional one at 28 months and then her formal diagnosis at age 3 — ended up being a blessing for our entire family, as Sean and I suddenly realized “Wow, this is REAL.” Juliet wasn’t going to develop certain life skills by osmosis, she wasn’t going to suddenly outgrown her autism, but she was still the same kid we loved unconditionally.
Early detection led us to quality early intervention, which can be so critical in improving outcomes for kids with autism. Juliet benefited from 2 ½ years of outstanding early intervention before she started school. She blossomed during that time, and we are fortunate that we still have some wonderful 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 is 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 services exist at all!
Juliet’s diagnosis also drove us to search very hard for a school with a strong track record of inclusion, personal care, 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 also have the benefit of a fabulous network of ASD families who continue to be a major source of friendship, information, and inspiration.
It has been nearly 6 ½ years since we took our first hesitant steps into the world of autism. Back then, I struggled to see past the term “lifelong disability.” I didn’t want my daughter to be different. Over the years, we’ve come to accept and embrace autism as a central part of Juliet’s identity and as an important part of our family’s fabric. Even though it’s still very tough to watch her struggle with things that come so naturally to most other kids, and even though some people will still make assumptions about her based on stereotypes and misinformation, our primary focus these days is on encouraging Juliet’s passions and nurturing her awesome “differing abilities.”
The world needs people who see and process things through an unconventional lens, and our job as Juliet’s parents is to make sure that she has the confidence and core skills she needs to shine on her own terms. Different does not mean defective, and I will proudly convey that message to anyone who will listen!
If any of you has concerns about your own child’s development — be it suspected ASD or something else — I hope that our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain in terms of better understanding and supporting your child.
And to everyone who has taken time today to read and reflect upon this note, thank you. There are some terrific links and information below for anyone who wishes to learn more.
Kristen is “one proud (but exhausted) mamma” to 8-year-old Juliet, who is gifted with Asperger’s and ADHD, and 6-year-old Heath, who is a bit less complicated. A native of San Francisco and lawyer by training, Kristen is passionate about raising awareness of and dispelling myths about autism. She dedicates much of her spare time to helping other families who are grappling with a new or suspected autism diagnosis and navigating the often complicated waters of early intervention, funding, and school choice. She is married to a “very nice Aussie bloke,” Sean, and is looking forward to becoming a dual Australian-American citizen later this year.