Life after Death Autism Forum 2019

This is the first major event that is initialed and led by the autistic community in Singapore. The forum is a donation-based, no-frills autism event focused on providing self-sustaining solutions for adult autistics after their caregivers have passed on.

The forum welcomes all members of the autism community who are interested in and/or developing solutions for adult autistics. Members of the public who are interested in autism issues may also participate.

Participants can also promote ideas/plans if relevant to the topic. There will be opportunities to share if the ideas/plans are interesting enough. Those who intend to share are advised to seat themselves in the first three rows.

Date: Saturday 28 September 2019 1-5pm
Venue: Lifelong Learning Institute (Second Floor Lecture Theater)

There are three spaces at the venue for wheelchair users. Please inform Eric if you require any accommodation such as sign language interpretation so that the necessary arrangements can be made.

Donation-based tickets are being sold on EventBrite, and the link to a special announcement-only WhatsApp group will be revealed after payment has been made. Join the WhatsApp group to stay updated on the event announcements and get instructions for participating in audience submission/up-voting.

Meanwhile, volunteers can sign up here. As for members of the media, click here for the official press release. The 2010 news feature that planted the seed for this event can be found here.

 

Panel 1: Inclusive Equality & Empowered Partnership

Representatives of the local autistic community will be invited to join a panel to share how caretakers can form an equal partnership with them (i.e. Inclusive Equality) to create sustainable solutions, so that they can continue to thrive even after their caretakers have passed on.

Inclusive Equality is an equal partnership between autistic and NeuroTypicals of mutual accommodation and support. It calls for both the elimination of discrimination against autistics as well as autistics empowering themselves to change their own lives. It encourages autistics to ask for accommodation, but not privileges. It believes that if autistics want to be treated equally, then they cannot use autism as an excuse to justify bad attitudes and unacceptable behaviour.

Examples of obstacles that impede mutual partnership support include a fragmented autism community with a silo mentality, the medical model that sees autism as a defect, the charity mindset that sees autistics as people to be pitied, persistent parental reliance on pseudoscientific autism therapies, inadequate training and qualifications for aspiring autistic advocates, discrimination by employers and insurers, and a parenting mentality that encourages autistics to pretend to be normal and ignore their own potential. The panel will examine these obstacles and propose practical ways to deal with them.

The goal is to have 6 panellists (3 males and 3 females). Priority will be given to autistics with a confirmed diagnosis and who are working adults. Face masks will be provided for those who prefer to obscure their faces. Each panellist can also opt not to use their real name and be addressed by a nickname assigned to them instead.

Eric will kick off this panel with a short talk introducing the concept of inclusive equality and why inclusiveness alone is insufficient. The panellists will take turns to add on to the talk. After this, the audience will submit their questions / suggestions / feedback using an app on their smartphone for the panellists to answer. Those with the most popular contributions (as indicated by the number of people voting for it) can be invited to share on stage.

 

Panel 2: Dealing with Deception and Exploitation

Dubious people have been trying to make use of the autism community for their personal benefit. The autistic panellists will discuss how to recognise the signs of dubious people and what the autism community can do to protect itself against them.

Autistic artist and researcher Dr. Dawn-joy Leong will kick off the short talk this time to share about the dangers of exploitative and deceptive practices that target autistics and their caretakers. Just as with the earlier panel, panellists will share their thoughts and the audience will then submit their questions / suggestions / feedback using an app.

Examples of case studies that may be discussed include:

1) An owner of a social enterprise who bullies autistics and uses them as tools to raise funds for her autism awareness work

2) A parent who meets autistic adults in private and proceeds to demolish their self-esteem under the guise of coaching them and providing emotional support

3) Fake friends who approach autistics during payday to get free drinks and treats, then disappear when the cash runs out

4) A foreign resident in Singapore who passes himself off as autistic to join autism chat groups and promote dubious business and investment opportunities

5) A medical degree graduate who worked as a clinic assistant but has not served her medical residency; yet she still presented herself as a medical doctor in order to promote pseudoscientific therapies provided by foreigner therapists with dubious reputations

6) A therapy centre which uses various misleading practices, such as featuring prominently an endorsement from a doctor in a renowned children’s hospital who specialises in a field that has nothing to do with autism and children

 

Panel 3: Brainstorming Ideas for Autistic Thriving

The panellists will discuss key concerns of the autism community that can include:

  1. Substitute Caregiving: Finding ways to delegate and replace personal caregiver duties without compromising the care for autistics (e.g. forming an advisory committee of trusted people to advise on life decisions, moving the autistic to an affordable overseas care centre)
  2. Investment Solutions: Finding ways to use resources to provide for and protect autistics (e.g. community farms, adult care centres, social enterprises, insurance policies, annuities) in the long-term
  3. Sustainable Success: Finding ways for autistics to achieve their success that also help to provide for their own living expenses as much as possible (e.g. teaching autistics how to run a farm to grow food, starting a robot-proof business)
  4. Living with Dignity: Finding ways to help autistics feel valued, positive and happy (e.g. how to let autistics pursue their harmless interests instead of pressuring them to do chores)
  5. Building Careers: Finding ways to develop talents and create careers for autistics beyond the formal educational system (i.e. alternatives to just getting paper qualifications and climbing the corporate ladder)
  6. Personal Development: Finding ways for autistics to master advanced life skills, cultivate personal responsibility, develop resilience, form meaningful relationships and emerge as future leaders.
  7. Combating Discrimination: Finding ways to bypass or dispel the discrimination that is limiting autistic employability and potential (which includes addressing employers’ concerns rather than trying to compel or shame them to hire autistics)
  8. Making New Deals: Finding ways for autistics and caregivers to help each other (e.g. fund scholarships for autistics who serve a bond to help the autism community)

Building on the concept of Inclusive Equality, Eric will speak briefly about the need to find sustainable solutions that go beyond mere survival. He will introduce some out-of-the-box ideas that can potentially transform the autism community, including helping those with intellectual disabilities and complex special needs. Just as with the earlier panel, panellists will share their thoughts and the audience will then submit their questions / suggestions / feedback using an app.

 

Closing & Followup

Eric will give a short speech to conclude the event. He will then invite all those who have already started with projects to create change in the autism community to apply to join an online workspace so that they can form a team to support each other’s work.

 

What is different about this autism event?

  • Not for Awareness / Sharings: We need practical solutions more than awareness.
  • Not for Therapies / Cures: We make the realistic assumption that adult autistics will remain autistic.
  • Not for Charity: We are looking for solutions outside the charity model.
  • Not about Talks: We need fresh solutions for the future, rather than sharing past knowledge and experiences.
  • Autistic Leadership: The project is started by and led by autistics for parents / caretakers, not the other way around.

 

Message to Parents / Caretakers

Dear Parents, boy boy and girl girl have grown up and now we understand some of the pain and sacrifices that you have gone through. We will try to help solve our problems. Will you accept our participation, however imperfect our efforts?

This event is a coming of age for the autistic community. It symbolises hope, not for autism cure / recovery, but that we autistics are willing to take responsibility for our own lives and share the burden with our caretakers. This event will be proof that autistics can stand as equals with parents and professionals; proof that autistics can be taken seriously. This event will plant the seed of true inclusion, providing a contrast to the token inclusion where autistics are seen as dependent on others and can only play the role of figureheads of the projects that are meant to help them.

We need fresh ideas and new blood. Is reminding existing insurance companies to be more inclusive the only way to obtain fairly priced insurance for autistics? Is asking for government support to build more day activity centres and provide more social welfare the only solution? Are job coaches and life skills training sufficient for autistics to thrive? Is setting up social enterprises based on the charity model the only way out? Let us come together to question our assumptions and explore new possibilities.