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 Affirming Actualising Advancing Autism Action Alliance]
To clarify, there are two inclusive approaches to handling disability:
a) 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.”
b) 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.”
Most people are under the misconception that autistics only need representation (advocacy), employment (a way to make a living) and/or housing (a place to stay). This perspective only sees the physical aspects (hardware) of what autistics truly need (heartware) – a community where they belong, which facilitates them to develop wisdom/maturity and which supports them to determine their own future. Even better, a community which provides the seed in which other people needing assistance (no matter autistic or not) can be brought into its fold to create a network of like-minded mutually-supporting communities.
In order for autistics to attain Inclusive Equality, they must take leadership of their own lives as well as their community. Hence, it is necessary to assemble a group of autistics living the growth mindset and who are willing to publicly identify as autistic. From this group of people, we then can cultivate a core team of autistic leaders who are:
- Able to empathize, collaborate and network with diverse people including NeuroTypicals
- Able to communicate clearly and persuade others to support the community’s shared vision and projects
- Able to formulate strategies, execute plans competently and deal with unexpected contingencies effectively
Since the nature of autism impedes the development of leadership capabilities, the leadership training will have to employ novel and unconventional ways to unlock the hidden potential of autistics. Only when we have a team of leaders who work to bring about change with a positive attitude, can there be a self-determined future for the autistic community.
Most of the assistance provided to autistics without intellectual disabilities focus only on employment; this neither addresses the fact that many such autistics are stuck in dysfunctional relationships with their families and that the employment opportunities are generally not meaningful, future-proof or have career advancement options. The mentality of “beggars are not choosers” and seeing such assistance as acts of charity stops change-makers from seeing how to provide autistics with meaningful and effective support that addresses the autistics’ true needs and concerns.
To break out of this vicious cycle, it is necessary to create a self-sustaining community of like-minded autistic peers to provide low-cost housing, low-stress freelance employment, and peer-supportive education so that autistics can be free to re-imagine and create their own future as fully contributing members of society. Relying solely on advocacy work, piecemeal government assistance and NeuroTypical-controlled social enterprises can only do so much.
We are not the colonies of our caretakers; we are sovereign individuals with dreams and aspirations.
We seek a home where we belong, a sanctuary to build our future, a community to grow together.
We pledge to work with all like-minded people, regardless of origin, status or ability, to make the world a better place.
We wish to be defined by our future potential and what we can do, rather than by our past limitations and what we cannot do.
We accept and work with our limitations and disadvantages. We also choose to go beyond our present situation so that we re-imagine and re-create a new and better future for ourselves.
We share the same spirit as the nation on which this aspiration is born – a nation with such a great disadvantage that the world does not believe it can survive.
1) 7A West Point Campus: A supportive community for autistic leaders without intellectual disabilities
We need to develop autistic leaders so that they can thrive within their personal lives and protect 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 team members, 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 daily living, artistic or technical 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 and mutual support.
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. [This is based on the hypothesis that the autistic developmental cycle continues into adulthood on a different path which can end with roughly the same outcome as emotionally mature NeuroTypicals.]
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.
2) 7A Social Services: An agency 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.
Add to that mix unsympathetic family members who subject them to verbal harassment and even evict them to force them to get better-paid full-time employment. Even if they manage to find work, they have to confront bullies, impatient supervisors and dreadful office politics.
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.
In addition, some autistics get in trouble with the law when they behave inappropriately (e.g. follow ladies whom they were attracted to, keep asking why they were blocked on social media). Those who they harass have to choose to either endure the issue or to escalate the issue to the police. 7A can be the neutral party that helps resolve such issues amicably.
3) 7A Mentor’s Circle: Providing mentoring/training support
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.
4) 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 together with 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.
5) 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.
They have also found solutions such as using 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.
Unfortunately, most of these autistics are hiding the fact that they are autistic, or in downright denial that they still have autism. These potential role models do not wish to experience the discrimination and stigma associated with autism. It is unfortunate that many of the best and brightest autistics disown the autism community as soon as they believe that they no longer need support. If they are all willing to identify as autistic in public, they could have overturned the negative perceptions of autistics being dysfunctional and lonely people who cannot achieve success.
Another aspect of this research is to find a way to persuade the hidden autistics to come out of hiding so that they can rejoin the autistic community and guide the younger generation of autistics towards a better future.
6) 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.
What we can achieve together is much greater than the sum of what we can achieve alone.
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.
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