Life after Death Autism Forum 2019

This is the first major event initiated 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.

This forum is supported by the Autism Resource Centre (ARC) and Pathlight School. Member of Parliament and President of ARC, Ms. Denise Phua, will be giving an opening speech.

 

Date: Saturday 28 September 2019 1-5pm
Venue: Lifelong Learning Institute (Second Floor Lecture Theater, next to Lift Lobby B)
Note: LLI is almost next to Paya Lebar MRT and highly accessible for wheelchair users. Note that parking at SingPost is cheaper than Paya Lebar Square.

Notetaking services and sign language interpretation will be provided for participants. Do inform us if you are coming in a mobility device (e.g. wheelchair), bringing your assistance/service dog, or requiring any other accommodation. You may check with nix.sang @ gmail.com regarding accessibility arrangements.

Caretakers who bring children are to be seated in the last three rows of the Lecture Theater, where volunteers will assist them with caretaking. Do note that volunteers will only be stationed within the Lecture Theater. Caretakers must accompany their children if they need to leave the Lecture Theater.

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 to get links for the topics under discussion during the forum.

Please also help to print and display the promotional poster for the forum.

The 2010 news feature that planted the seed for this event can be found here.

 

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 reliance on pseudoscientific autism therapies, inadequate training and qualifications for aspiring autistic advocates, discrimination by employers and insurers, and a mentality that encourages autistics to pretend to be normal and ignore their own potential.

We have 5 panellists (3 males and 2 females). The panel chair is Dr. Siobhan Lamb, an Australian autistic who has extensive lived, speaking, teaching and parenting experience relating to autism.

 

Panel 1: Growing Up with Inclusion (focused on school aged children)

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 then discuss the issues relating to growing up with autism, including how we can bring the concept of inclusion into real life. After this, the audience will submit their questions / suggestions / feedback using pieces of paper for the panellists to answer.

 

Panel 2: Facing Adulthood (focused on youth)

Autistics often lack the support they need to develop their self-awareness, inner strength and wisdom. Without these, they are not ready to face a harsh world where nasty people bully, manipulate and exploit them. Eric will give a short talk about how autistics can develop the inner qualities that allow them to thrive despite the difficulties they face. The autistic panellists will then discuss how autistics can handle the dilemmas that becoming an adult entails. Just as with the earlier panel, panellists will share their thoughts and the audience will then submit their questions / suggestions / feedback using pieces of paper.

 

Panel 3: Sustainable Solutions (focused on older adults)

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 pieces of paper.

 

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.