WHEN I started to write about my lifetime filled with multiple mental illness misdiagnoses that had finally led to me being a late-diagnosed autistic female at the age of 35, I found a shift in how my story had become a platform that had resonated far wider than I thought it would reach.
Women, girls, and mothers sought me out to tell me that my story was their journey too.
I hear my own story being retold to me in their own experiences. I cried tears when women reached out to me and explained how they would print my story and bring it to their psychiatrists as proof that this was what happened to them too.
To please give them the diagnosis to set them on a path to heal, to have the tools and vocabulary for their struggles and challenges.
Mothers would reach out to me to get an inkling of what their autistic daughters are going through.
I don’t often have the answers, but I know that in just saying hello back to these mothers, I am giving them some assurance that their daughters will find their way, in their own time, and on their terms.
One such mother of two teenage autistic girls had become a staunch ally and confidante of mine.
She opened doors to advocate a seat for me at the table each time in conversations about autism that had always been held without us present, the very own autistic community.
In one such meeting, it led me to find a speech-language therapist standing behind the door waiting to say “Hello, I would like to work with you”.
Landing myself between a parent advocate and a speech-language therapist had put me confidently on this advocacy path to push for a more meaningful representation and inclusion of autistic voices across all platforms to shape research and policy around autism.
This friendship held my belief in how important each of our voices was as it provides a real-world perspective on the effectiveness of various interventions and approaches.
How we each are constantly negotiating our perspectives, the voices of the people we love and care for and also negotiating our own space to be a mother, an educator and speech-language therapist, and me, the activist.
When the Ministry of Health, helmed by its ex-minister Khairy Jamaluddin called for a multi-stakeholder workshop to chart a national pathway forward for autism; it was the speech therapist that had to fight for the inclusion of autistic advocates themselves.
To most, the general sentiment had always been that it was yet another workshop. But I know that for the three autistic self-advocates, it was our chance to make everyone understand our needs, struggles, and to put ourselves in a vulnerable position of being honest and open about our lives.
That workshop ended with the grand gesture of the will to form a National Autism Council for the good of the community. It was euphoric and it felt like we had finally found the political will to take on the autism agenda meaningfully.
It had almost been a year and all efforts to keep abreast of the developments were met with deafening silence.
It is with deep disappointment that I share with the community because we have been put on this path many times before where we share our trauma and our experiences are often considered to be an aesthetic representation. When can we begin to consider ourselves meaningful participants?
As I find myself sitting on more panels, participating in more discussions, giving more talks, and running more workshops, the push for reform and further awareness of autism is more than just about providing more information and recognition of autism.
I have realised that our perception of autism in Malaysia is still in its infancy. We have no clear pathways forward for each of the partners in the entire breadth of the ecosystem.
We still view support for autism from the lens of charity and a medical model of understanding autism and its recognition as a lifelong disability. It is a monumental reform that we need.
When I made the conscious decision to dedicate myself to advocacy, the clarity in my goal was to build a better future and support those who come after me. But in the year that was, I had also been torn apart and scrutinised from all ends.
I had found myself multiple times in a dark place too, because how am I inspiring those who see me as an advocate, when I still don’t have all the answers and I still struggle every day in my interactions with people.
Even as more awareness grew, I was arrested and manhandled last year during a meltdown. I had multiple meltdowns where I stood frozen on sidewalks for hours on end, where my closest friend had to leave work to silently get me from the hospital and deliver me home.
I am always deeply aware of how uncomfortable my advocacy is. People are uncomfortable when I am in the room. I am uncomfortable all the time when I put my entire life out to be scrutinised, to be discussed, in hope that we will begin to understand.
I still struggle with shame and guilt immensely and after a lifetime of feeling like I don’t belong and being unworthy of acceptance, I do wonder why I should continue advocating, and why I should put myself out there.
I struggle between a public persona of being an advocate that I have got it together, but in truth, I am struggling. I fear where this would all lead us if I’ve got it wrong.
I am hoping that my being vulnerable and blunt honesty about my advocacy journey, would create an acceptance that change is uncomfortable and talking about autism is uncomfortable even for me.
But we must continue being uncomfortable and talking about uncomfortable things until it is. I still am terrified each time I share my story, but I know there will be those who will hold me up when I do fall, and then we try again.
It is now beyond just my story, but a story of the autistic community.
Autism is not just what happened to me, or to another person. It is what touches the lives of our parents, our carers, our teachers, our siblings, and so much more.
It’s about socio-economics when one parent cannot find the support they need and is forced to leave their career. It is about education when the teacher needs resources to provide the same opportunities to those with special needs.
To the employers who want to help their autistic employees thrive and belong in the workplace. To the autistic entrepreneurs who want to build solutions for society. A paradigm shift needs to happen, urgently.
On this day when we celebrate autistic awareness, I want us to also start shifting our perspectives to view and understand autism through the social model. All of our experiences in life, as autistics or not, are intertwined.
We must move beyond autism awareness to autism acceptance. We can only begin building a more inclusive society when we have an active and affirmative stance on autism acceptance.
In making acceptance the agenda, we can begin to make policies together where autistics have rights to education, employment opportunities, and maybe, just maybe, an autistic member of Parliament next. – The Vibes, April 2, 2023
Beatrice Leong runs an autism advocacy group called Autism Inclusiveness Direct Action Group (Aida). Diagnosed with autism spectrum disorder (ASD) at age 35, she dedicates her life path to reframing our understanding ASD to foster a greater understanding of and for meaningful participation and inclusion of autistics themselves across all levels of society.
Listen to the new Podio podcast ‘Autism from the Inside Out’ here.
