Life after Death Autism Forum 2019

This 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; international participants are welcome but they have to pay for their own travel expenses.

Caregivers and VWOs, you can propose your plans and team up with other caregivers to create your own projects, organisations or funds. You will have chances to go up on stage to share.

Date: 28 September 2019 1-5pm
Venue: Tentatively near Paya Lebar MRT
Status: Interest has been registered, proposal is being discussed. Details of this event may change based on feedback.

There is no need to register formally for an event, but you will have to join an announcement-only WhatsApp group. This is where we will send out the event announcements as well as the links for participating in audience submission/up-voting.

 

Event 1: Roundtable on 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. Unlike a visible physical disability, autistics have a different way of thinking and confront a different situation due to their invisible disability. Hence, they require approaches that are different from most other disability communities.

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.

We aim to have up to 12 panellists in total: 6 males and 6 females. Priority will be given to autistics with a confirmed diagnosis, who are working adults as well as who have mature and interesting perspectives. 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.

The audience will submit their questions/suggestions/feedback using an app on their smartphone for the panelists 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.

 

Event 2: Roundtable on Dealing with Deception and Exploitation

Dubious people have been trying to make use of the autism community for their personal benefit. This roundtable comprising of the earlier autistic panellists will discuss how to recognise the signs of dubious people and what the autism community can do to protect itself against them. The audience will submit their questions/suggestions/feedback using an app on their smartphone for the panelists to answer. Those with the most popular stories can also get to share on stage.

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 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 deceptive practises, 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 therapy and children.

 

Event 3: Roundtable on Brainstorming Ideas for Autistic Thriving

The panellists will introduce the initiative to create the first autistic-run organisation in Singapore within the next few years, and then go through the following topics with the audience to see how the autistic community can help with the following topics:

  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 helps 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 bossing them around 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 employer’s 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. parents fund university scholarship for autistics who will serve a bond to help their community)

The audience uses an app on their smartphone to submit and vote for ideas. People who wish to speak about popular ideas will be invited to join the panellists to go on stage to share about their proposals. Questions submitted by the audience will also be answered.

 

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 more solutions and fresh ideas; experts are here more to guide than to share.
  • Truly Inclusive: The project is started by and led by autistics for autism parents, 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 are going to try to help solve our problems. Will you accept our participation, however imperfect our efforts are?

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 their 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 only being figureheads of the projects that are meant to help them.

It is also an opportunity for experienced parents/caretakers who are currently doing work discreetly to showcase what their efforts to both inspire and recruit the younger generation of parents. It is an opportunity for like-minded NGOs and employers to create awareness and raise support for their efforts.

This is an event that will help unite the autism community to move together towards a common goal. It is an event that will bring different parties together so that they may sit down and work together for a greater purpose.

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 exploring new possibilities.

 

What is Needed?

  • A venue for the event with a capacity of 150-250 people
  • Ideally, accommodation for adult autistics who come along (e.g. quiet rooms for those with sensory issues)
  • Volunteers to help organise the event
  • Networkers to help contact and invite the people to participate

If you want to be notified when this event is finalised, you may join the iautistic announcement-only WhatsApp chat group