At war with the perception of disability

Tracy Hutchinson Wallace photographed at her Habitat for Humanity office in El Socorro. Makeup by Shennelle Escayg, photography by Mark Lyndersay.

Originally published in Express Woman, November 27, 2016

My name is Tracy Hutchinson Wallace and my son is autistic.

This is not going to be a testimony about dealing with overwhelming grief, implacable denial and paralyzing shock. That’s not me. I’m the kind of person who imagines worst-case scenarios and their most effective resolution as an idle way to pass the time while waiting in line at the grocery. When he was diagnosed, it dawned on me – I knew autistics from every facet of my life.

Primary school chums. Children of high school friends and rivals. Children and relatives of folks that I shared digs with on campus. University friends. Neighbours. Children of work colleagues. My relatives. So, an Autism diagnosis for our son? Shrug.

My autism journey, has always been about war. Rapid reconnaissance missions, frequent and bloody skirmishes, battles won and lost ground, betrayal by comrades-in-arms while under heavy fire and examples of the most honorable actions from sworn enemies.

This is not a War on Autism, but rather a War on Trinidad and Tobago’s View of Autism. A war I absolutely, positively cannot afford to lose because it’s my son’s future on the line. And I only have ten years to change things drastically so that he, his baby brother and all autistics have a fighting chance at a great life. Just like the rest of humanity.

Because I have been researching, agitating and advocating for autistics and their allies, it seems as if my entire adult life had prepared me for parenting an autistic child. I had an idea of where to begin and how to react when confronted with trouble, but there have been some harsh defeats.

We applied for an aide to integrate him into primary school, but could not get one because they had ALL been let go. One significant early victory: when the public primary school deemed him unable to learn to read or write, we moved him after one term to a school that understands how autistics learn.

After the first day, the principal said “We’ve placed him in the Infant 2 class. He can read to Standard 1 level, but he’s far too young to be with kids of that age.” Another defeat – waiting 15 months to get an assessment appointment. The latest ongoing battle – being sidelined by NGOs claiming to be advocates because I ask questions and insist on accountability.

It’s the need to have my questions answered and get the best possible intel that moved me from ally to advocate. That’s why I agreed to be a coordinator of the parent support group Autism Spirit, because for parents like me, “Awareness” is no longer enough. Walks and t-shirts and “April is Autism Month” declarations are not enough. There is so much more that needs to be done to improve life for autistics in Trinidad and Tobago.

Autism is not a mental disorder, illness or disability. Some autistic differences – strong perception of patterns, unbiased perception of all senses, exceptional sensory memory, strong attention to detail, long-endurance focus, supreme emphasis on facts, unbiased and uninfluenced decision-making, perfect memory and recall – are the strengths that most of us lack, and that society values greatly. These are the qualities needed in the arts, science and technology that have greatly improved the quality of all of our lives.

Unfortunately, because our society is very unaccepting of anything or anyone in the minority, strongly-expressed Autistic traits are usually labeled and stigmatized as deficits and disabilities, because they do not fit the general norm. “Being Different” is often a synonym for “Being Less Than”.

That is why when ‘good’ and ‘undesirable’ autistic differences are strongly-manifested – all of the above, plus challenges in planning, organizing, impulse control and multi-tasking – neurodiverse kids and adults are not given the supports needed to allow autistics to thrive and succeed.

Autism is real life – 24/7, 365 days a year, forever. What I really learned from Autism Spirit is that I am not alone in this fight. People, soldiers, warrior fathers and mothers from neurotypical and neurodiverse families are doing more every day to embrace differences.

We are insisting on significant, legislated, enforced and automatic accommodations, from sensory-friendly modifications in the public environment (low lights, softer volume, quiet spaces to recharge and escape), slowing down the information flow, respecting their tendency to become overwhelmed in typical environments, avoiding strong social demands (eye-contact and talking) and foster their valuable differences.

We want public support for autism action – insurance companies to cover therapies and services, mandatory early assessment for all ECCE and Primary School Students, training and guidance targeted at parents and caregivers (not just teachers and professionals), truly inclusive and integrated public education and employment opportunities. Only when we have appropriate and equitable accommodations, services, supports and treatment for autistics everywhere will I be able to declare “Mission Accomplished!”

But for now, the war continues, and I get my motivation to wake up and engage the enemy every day from a darling little boy.  He teaches me every day what it really means to appreciate and celebrate our neurodiverse world.

It’s giving me the last three years Valentine’s Day cards on my birthday and at Christmas because they all say “Je t’aime Maman!”

It’s insisting on the daily call to Daddy to wish him good luck at work. It’s spinning in circles for minutes on end until he can no longer stand, just because it makes his baby brother laugh. He is doing well at his school because that community acknowledges, understands, accepts and appreciates his differences in a way that the typical school system does not.

And now I am helping to build new, vibrant, spirited communities of parents, allies and Autistic self-advocates who celebrate the same victories and suffer the same defeats.

The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum.