Although local autism initiatives are starting to engage and include autistics, there is still little effort to involve autistics in policymaking and decision-making roles. Meanwhile, autism initiatives focus almost entirely on caregivers, with little attention given to autistic people. Autism initiatives also engage non-autistic professionals to support autistic clients, with little attention paid to develop autistics to support each other.
Since both policymakers and established autism organisations are not taking the lead in practising Inclusive Equality, it is up to the autism community to create new alternative organisations to fill this gap. These organisations will include and treat all stakeholders as equal. They will invest in autistic talent and competency so that they can be effective changemakers that create value for all stakeholders.
It is also frustrating to change the mindset of the public and the autism community away from that of seeing supporting autistics as a form of charity work or an attempt to fix disorders. Singapore recognises autistic artists and musicians with awards but ignore those who provide autism services, run communities to provide mental health support for autistic adults and propose coherent policies aimed at creating strategic change.
Most caregivers are unwilling to even try the services of openly autistic people, preferring instead to pay non-autistic professionals. Many organisations are keen to provide low-paying dead-end jobs vulnerable to automation but not keen to create scholarships to invest in developing autistic talent to become well-paid professionals.
The solutions offered tend to be charity in nature. It is common to have changemakers using grants to subsidise programmes run by non-autistics with neither financial viability nor strategic value, but just to let everyone enjoy a good time or provide some basic autism awareness.
Another example is to improve the status quo slightly. For example, a businessperson opined that there is no need to deploy sustainable solutions to health insurance discrimination such as Peer-to-Peer insurance. Instead, he recommended building a strong community where people “give from their heart” via crowdfunding whenever anyone needs help with paying the hospital bills.
If we are serious about solving the “Life After Death” issue of how to support autistic children after the caregivers have passed on, we must come together to create a third alternative beyond fixing autism and charitable support. We need an alliance of changemakers and organisations that focus on building self-reliance and personal responsibility. We need solutions that break out the limiting concepts used by the disability community; we need projects that go beyond disability support, inclusion or accommodation.
Just as Singapore refused to rely on foreign aid but sought foreign investment, it is time for all of us to stop relying on grants, handouts and subsidies. It is time for ourselves to make our work self-reliant and worthy of investing in to create positive change.