In order to create strategic change within the autism community to deal with the “Life After Death” issues, I propose undertaking 7 game-changing initiatives based on the concept of Inclusive Equality. [Note that 7A tentatively stands for Autistic Affirmative Accepting Advancing Actualising Astute Agency]
To clarify, there are two inclusive approaches to handling disability:
1) Inclusive Acceptance: “I am different from you and I am proud to be different in my special way. Please be patient with me because I have difficulty with some daily tasks that are easy for you. Please listen to my story to understand me better, and do your best to make me feel welcomed as part of your life.”
2) Inclusive Equality: “I wish to be treated the same as you by everyone else, but I need help to get there. Please support my efforts and guide me so that I can grow together with you. It is less important for me to share how I am different from you, and more important to find out how I can work together with you to make both our lives better.”
1) 7A Mentor’s Circle: Providing mentoring/training support for autistic trainee leaders
Assemble a group of allies who can provide autistics with leadership training opportunities. Autistics will learn practical skills and be exposed to the situation on the ground by undertaking outreach efforts under the mentors’ guidance. This can include volunteering for mentors’ autism activities, engaging in panel discussions with mentors’ autism network, and inviting mentors to be part of the autistics’ initiatives so the mentors can demonstrate how to get things done effectively.
2) 7A Delegation: A group to advise policymakers/media, negotiate with stakeholders
Like-minded autistic advocates can band together, carefully study the issues at hand, consult with their international peers, and find pragmatic solutions to the tough questions faced by the autism community. They can then represent the autistic community to make recommendations, and enter into negotiations with other stakeholders.
For instance, a team of autistics and a team of caretakers can meet with representatives of the largest insurance companies in Singapore to negotiate a win-win arrangement to provide competitive insurance cover for autistics while having sympathetic policymakers mediate the meeting. Likewise, the delegation can also stand together with other disability groups to convince policymakers to pass anti-discrimination laws to protect the disabled community.
3) Solution-focused Research: Research on what already works rather than what does not work
Hidden autistics are typically the pioneer group of autistics who were born in an era before autism awareness arrived, and thus were unable to benefit from the supports we have today. Many of them have managed to adapt successfully by creating their own supports to thrive – including forming their own families. We should find a way to research and learn from them.
Autistics worldwide have also used many solutions such as nutritional supplements and time management systems to help overcome the difficulties that they face in life. We should focus on finding out what works and then recommend the solutions for use by the autistic community, rather than do more research on problems.
4) Autism Action Alliance: Uniting all autism stakeholders in an initiative backed by reputable organisations
An alliance to bring all the grassroots efforts for change under one umbrella, backed by reputable and established social purpose organisations. It will be divided into various sectors such as (physical) wellness, community building, leadership development, autism support services, advocacy, research, career building etc. This will eventually become an integrated ecosystem of inclusive-minded parties that will expand outside the autism community to benefit the rest of society too.
There will be a one “sign on” system where a participant can sign up to the entire ecosystem and give consent to participate in all the initiatives that they are eligible for. Autistics will “adopt” their favorite sector based on their interests, and be invited to be the ambassador of those sectors.
Lots of small fry can become a giant whale to create change. Imagine the possibilities if researchers can use one large consolidated pool of candidates instead of having to recruit candidates by themselves, if community events can be combined into an integrated large Olympics style event broadcasted on prime time TV instead of many tiny separate ones, if many small social enterprises hiring autistics can come together to bid for a large national-level project. This alliance breaks down the silos within the autism community and gets all parties to be in sync with each other while following a mutually agreed masterplan for change.
5) 7A West Point: A leadership training centre/university for the autistically gifted
We need to develop autistic leaders so that they can thrive within their personal lives and look after the interests of fellow autistics after caretakers have passed on. The autistic developmental cycle is very different from that of non-autistics. Hence, it is necessary to conduct applied research into how to attain different milestones that can unlock advanced abilities thought impossible to attain by autistics, such as people management and strategic planning, via applied learning in the real world instead of theories and frameworks.
The biggest problem with employing many autistics without intellectual disabilities is their deeply ingrained self-defeating attitudes and behaviours, acquired due to growing up in an ableist environment that fails to provide suitable accommodation and support to help them become emotionally mature and self confident adults. Examples include emotional outbursts when people fail to meet expectations, refusing to participate as a team member, insisting on fixed ways of doing things, believing there is no need to learn from others, expecting others to accommodate them without making effort to accommodate others, a strong dependence on external guidance rather than personal initiative, and taking for granted help from those who go the extra mile for them.
Rather than addressing the psychological (e.g. emotional trauma) and physiological needs (e.g. chronic fatigue) of autistics, many people focus on upgrading academic qualifications and mastering skillsets. However, even PhD qualifications, the mastery of public speaking and useful life skills (such as driving skills) are insufficient to ensure employment. It is necessary to address the root cause by developing self awareness (such as letting them work with other autistics so that they can see their own undesirable behaviour in others), addressing the obstacles to unleashing their potential (e.g. nutritional deficiencies, lack of a time management system) and healing their emotional traumas through a lengthy process of self-reflection.
In this way, autistics can feel safe and open themselves up to the world, while understanding why they need to change themselves instead of being forced to change by others, allowing them to progress naturally to the next stage of their developmental cycle. This is not about the mastery of masking (and pretending to be normal), but multiple leaps of cognitive insight that collectively activate/enable entire classes of native social interaction, executive functioning and sensory processing abilities.
Eventually, a significant number of autistics will be able to develop the emotional maturity, resilience, proactivity, and equanimity that can allow them to take on leadership work and stand as equals to their NT leader peers. Once autistic leaders are capable of creating change effectively, they can join forces with caretakers, autism support professionals and other leaders of the disability community to create change together for the benefit of all autistics, including autistics with high support needs who are unable to advocate for themselves.
6) 7A Social Services: A VWO to support autistic adults without intellectual disabilities, including mental wellness, legal and financial matters
There is currently very little support for autistic adults without intellectual disabilities in Singapore, as they are considered doing so well that they need no support except to obtain employment. This is untrue – many have emotional trauma, poor executive functioning skills and unsympathetic families that keeps them stuck in a rut that they cannot get out of.
Many are lonely but do not have people of the same neurotribe to befriend and mentor them – resulting in them becoming emotionally unbalanced. The suicide rate for autistics is almost ten times higher than for the general population.
A dedicated organisation led by autistics is needed to provide direct and consistent support to them so that they can finally contribute at their full potential. They are low-lying fruit that need relatively little help to become self-empowering once they have good role models to learn from.
7) 7A Network: An international network focused on Asia for people to support each other’s autism projects
Singapore is just a tiny city among the 52 territories in Asia. There is a need to form an international organisation that can outlive any single point of failure within the network, as well as to establish synergies with all the other stakeholders of the 3 billion strong Asian population.
Cross-country collaborations building on a web of trusted partners, for instance, Singaporeans establishing an autistic farming community in a third world country with plentiful land, cross-country autistic entrepreneur business franchises and an Asian wide autism research programme to shed light on the situation in Asia, become possible. One day, we may even be able to persuade all the 52 territories’ leaders to jointly support the autistic and disabled community by passing disability friendly laws that are adopted throughout all of Asia.