Autism Spectrum Disorder Tools For Parents in HK

What Is ASD + Characteristics + Diagnosis:

What is ASD?  ASD is a very individualistic thing but ultimately stands for Autism Spectrum Disorder, with “Spectrum” being the key word for understanding it. Pippa notes that they say that there are 100 types of autism definitions for 100 autistic kids. It’s a huge arc of behaviors that go from the low-functioning far-left to the high-functioning far-right side, the latter implying they can interact, adapt and be independent, might even have special skills, though this is quite unusual.  One of the myths perpetuated by movies is that those with autism have the capacities of geniuses, while it’s the other way around—prodigies and savants relatively often score high on autistic traits. The initial challenge is to recognize the behavior for what it is and figure out whether it's an isolated occurrence that might be a quirk in a kid’s character or autism, behavior with a situational element, a frequency, a pattern.

Characteristics:  Key characteristics of ASD tend to be centered around sensory stimuli, ritualistic behaviors, social inhibitions, incapabilities to read social cues, facial expressions and body language, isolation, lack of contact, avoidance of eye contact, not hitting fundamental milestones in development. Some early signs are a lack of smiling, pointing, repetitious behaviors, laughing or crying erratically and delay in speech. Typical interests for kids with ASD are often one particular object or movement, like lifts and fans, but some have no interest at all and need to be taught how to initiate their imagination and play.

Diagnosis:  When it comes to diagnosis and assessment, moms often notice the signs early on themselves as the kid fails to hit the expected milestones. Sometimes a pediatrician will point it out and some parents might be in denial and do nothing about it for a while, especially as it is tied to shame in some Asian communities. It’s best to have kids diagnosed early, most ideally before 2, but this is often very hard. There are online home tests like ATEC, which is not fail-safe but is an excellent starting point. Usually, the pediatrician navigates the process, referring families to behavioral psychologists who do testing procedures and so on. But this is no cure and this is where the hard work starts. Kids with ASD might need to go to occupational, speech, behavioral, ABA, play or another form of therapy that will best suit your kiddo. The cost associated with special needs is always a challenge, but keep in mind that there are some options to alleviate the blow.

A Parent’s Perspective:

Pippa has generously decided to share her family's personal story with us. Hetty’s a five-and-a-half-year-old animal-lover (with a bias towards ponies), who only started talking about a year ago. She is sociable, but lacks the tools to express herself and the ability to read social situations—she can do on a hugging-spree, which is sadly not always appropriate. She continues to hit new milestones steadily, though at a slower pace—but Pippa says that Hetty dances to her own tune and it's in everyone's best interest to respect that.

Hetty didn’t display unusual behavior until about 18 months old. Neither Pippa nor the pediatricians noticed anything remotely alarming. Then suddenly the world became the scariest place and Hetty more and more aggressive, isolated and frightened by new stimuli, crying and screaming from overwhelmingness, running away. After a summer of obsessive googling, Pippa decided to seek professional help. Despite her denial, she wasn’t very surprised by the diagnosis but still went into shock afterward and then back into denial, moving onto more extensive research and preparing herself for making informed decisions. They made a health plan and started ABA therapy, applied behavioral analysis, and play therapy in parallel, which worked for Hetty at the beginning of her individual journey. The former, biomedical side was put into play by Pippa herself as doctors are reluctant to suggest unproven approaches. Pippa advises that parents of freshly diagnosed kids sleep on their decisions and take their time, research, question. Professionals will often rush it, but it’s more important to make the right decision for your kiddo and your family than to make it instantly.

Learning to navigate your kid’s autism is a wild roller coaster. You yourself are your biggest challenge as your life is turned upside down. You need to find deeper wells of patience, tolerance and selflessness, say "no" a lot more, change your priorities and find that balance between sheltering and challenging your kiddo too much. What Pippa finds the most rewarding is celebrating achieving things you feared impossible, and she finds great beauty in the straightforwardness of Hetty’s character!

Key Resources, Advice & Support Recommendations: