Life after Death Autism Forum 2019

Thank you, everyone, for your support to have made this ground-breaking event possible. Without the 30+ volunteers and panellists, this forum could not have happened. The generosity of the participants has fully covered the costs of organising the event, showing that there is strong grassroots support for Inclusive Equality. I am also very grateful to ARC/Pathlight for lending their official support for this event.

This event may seem to be a small step forward, but it is a huge leap for autistic empowerment in Singapore. It sends a message that autistics can be, and should be, taken seriously as partners for creating positive change. It opens the door for the implementation of the Autism Action Masterplan, which will eventually develop the capacity for the autistic community to be able to take care of itself after the caretakers have passed on.

I am starting a Leadership Training programme with a small select group of autistics with a heavy emphasis on personal mastery combined with the performing arts. In a few years, they will form the core team who will implement the Masterplan. Meanwhile, Singaporeans can expect more ground-breaking autism events from this team of pioneers.

 

What people said about this event:

 

Archived Details

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.

This is the first major event initiated and led by the autistic community in Singapore. The forum is a pay-as-you-wish, 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.

Pay-as-you-wish tickets are being sold on EventBrite until 27 September. Please do 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.

 

Introduction

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 (4 males and 1 females). The panel chair is Dr. Siobhan Lamb, an Australian autistic who has extensive lived, speaking, teaching and parenting experience relating to autism.

 

3 Panels across the autistic life span

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 contribute their questions / suggestions / feedback.

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 contribute their questions / suggestions / feedback.

Panel 3: Sustainable Solutions For Autistic Thriving (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  needs. Just as with the earlier panel, panellists will share their thoughts and the audience will then contribute their questions / suggestions / feedback.

 

Programme Outline

1300 – Forum commences

1305 – Welcome Speech by Eric Ϲhen

1310 – Opening Speech by Mayor Denise Phua

1320 – Introduction of Crunchy Teeth

1325 – WhatsApp Autism Community by Wesley Loh

1340 – Inclusive Equality by Eric Ϲhen

1400 – Panel Chair Address & Panellists Introduction

1410 – First Panel Discussion: Growing Up with Inclusion
(Siobhan Lamb, James Chan, Langeline Leong, Daniel Leong, Sia Sin Wei, Cheow Yi Jian)

1440 – Self Development by Eric Ϲhen

1500 – Second Panel Discussion: Facing Adulthood
(Siobhan Lamb, Langeline Leong, Daniel Leong, Sia Sin Wei, Cheow Yi Jian, Wesley Loh)

1530 – Tea Break

1600 – Sustainable Solutions by Eric Ϲhen

1620 – Third Panel Discussion: Sustainable Solutions for Autistic Thriving
(Siobhan Lamb, Langeline Leong, Daniel Leong, Eric Ϲhen)

1650 – Closing comments by Eric Ϲhen

Note: Subject to change at the discretion of the organiser.

 

Panellist Information

ERIC ϹHEN
Eric Ϲhen is one of Singapore’s first autistic autism advocate. After started on his autism advocacy journey by appearing in the Straits Times in 2002, Eric has done about 100 autism sharing, most of which are at various cities in Greater China.

Eric is a key founder of the WhatsApp Autism Community Singapore, an inclusive autism support network comprising over 20 groups.

Eric is currently employed full-time doing IT and psychometric work. He is actively upgrading his formal qualifications, starting with studying for a Specialist Diploma in Applied Drama and Psychology. He wishes to empower autistics like himself to achieve their dreams in a pragmatic manner.

 

DR. SIOBHAN LAMB
Dr Siobhan Lamb is a teacher from Sydney, Australia and currently lives in Singapore with her husband and three children. Her family is one of acronyms!

Her three children and herself are dyslexic and have ADHD, herself and two eldest are Autistic, her sons have dyspraxia and all three of her children have been identified as gifted. She completed a Science Degree at University of Sydney and then completed her PhD in Physical/Theoretical Chemistry – partly at Sydney University and partly at Cornell.

She started her teaching career as a Science and Maths teacher but has been focused more on supporting students who learn differently in recent years. She has also given talks relating to Autistic children from the age of 8-18 to both parents and teachers to gain a better understanding and to help them navigate a path forward with their children and students.

 

DR. DANIEL LEONG
Dr. Daniel Leong wasn’t talking as a child, so his mother had to quit her job as an English teacher to teach him. She succeeded, and later Daniel had a rather eventful student life. After graduating, Daniel’s mother encouraged him to work in WINGS Melaka Early Intervention Centre.

Finding success as a teacher, Daniel decided to study Special Education and eventually completed his Ph.D. in Special Education with Macquarie University (Australia). Daniel has lectured at several educational institutions including Taylor’s University, University Malaya, UPSI, and Dika College. Daniel was diagnosed in 2011. He is currently serving the autistic community through Autism Initiatives Malaysia.

 

CHEOW YI JIAN
Yi Jian is a third-year engineering undergraduate and a keen autistic self-advocate. Despite early challenges in his childhood and his early diagnosis with autism he has managed to persevere through the mainstream Singapore education system to make it into university, his efforts being recognised by his junior college with the Dr. Yeo Tze Ling Award in 2017. He is currently pursuing a degree in Engineering Systems and Design (ESD) at the Singapore University of Technology and Design (SUTD) and aims to join the transport industry to make a difference using the passion in the sector he had since young.

 

JAMES CHAN
James Chan is a 27-year-old individual from Singapore. He is an Inclusion Consultant at Asia-Europe Foundation as an expert on the development of inclusive and accessible workplaces. He holds a Diploma in Mass Communication from Ngee Ann Polytechnic, Singapore.

After being diagnosed with Autism in 2017, James became actively-involved in Autistic and Disability Advocacy, working with the Disabled Peoples’ Association Singapore as an Inclusion Ambassador, being invited to the 21st ASEF Summer University 2018 on Youth and Disability in Melbourne and Christchurch and as a member of the Working Group for UN Convention on the Rights of Persons with Disabilities Parallel Report.

 

LANGELINE LEONG
Langeline Leong has been an elocution coach for the past international champion of public speaking. She has been teaching musicality, theory, and composition for the past 20 years in Montessori kindergartens and privately. She has sponsored the Cantonese Toastmasters Club and is the current Club Coach of Jurong Town Toastmasters Club. She overcame alexithymia with a professional kinesiologist but is still living with Auditory Processing Disorder, ASD and Adult-ADHD.

 

SIA SIN WEI
Sin Wei is currently working at a science lab assistant at Pathlight, mainly supporting science teachers to educate the primary students and thus improving their science literacy. An aspiring naturalist and science lover himself, Sin Wei enjoys reading science and natural history books and is a volunteer at a local conservation and environment organisation.

 

WESLEY LOH
Wesley Loh is an actively involved autistic in Singapore. Ever since connecting with the autism community in 2017, he garnered like-minded autistic friends to collectively join in autistic advocacy, initiatives, and representation, from organising social events to volunteering at the Asia Pacific Autism Conference (APAC) 2019, to running the WhatsApp Autism Community Singapore network which Wesley is a co-founder.

Wesley recently began his career journey in the Corporate Tax field. Having battled the odds of bullying, late diagnosis, and surviving University, Wesley hopes to reach out to more autistics who are going (or went) through similar experiences so that none need to journey alone. His vision is to bring the Singapore autistic community together as a collective unit and find richness and goodness in our common bond.

 

What is different about this autism event?

  • Not for Awareness / Sharings only: We need practical solutions beyond 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.

 

Transportation

For drivers, it is cheaper to park at SingPost building and walk over to the Lifelong Learning Institute (LLI). If you wish to park at LLI, do park near to Lobby B to save yourself walking time.

If you are taking the MRT, please alight at Exit A of Paya Lebar MRT and walk straight to LLI.

If you are taking the bus, please alight at the bus stops closest to Paya Lebar MRT.

You may use this service to plan your journey.

 

Accessibility & Special Needs

The organising team understands the importance of universal design for full accessibility for diverse communities.

There might be potential constraints due to venue and resource. Hence we would like to encourage participants to indicate their accessibility requirements in the survey form so that we can contact you to understand better and cater accordingly to our best effort.

Currently we have the following accessibility arrangements in place. Please let us know via nix.sang @ gmail.com if you will be utilising them so that we can manage the space including reserving seats for you in designated areas.

  1. Reserved seating area for wheelchair users or those using other mobility aids.
    This area provides easy access to entrances, exits and accessible restrooms. Due to venue constraints, these are only at the back of the lecture theatre. The seats are inclined auditorium style and this will not affect visibility of the stage.
  2. Reserved seating for attendees with their service/assistance animals
  3. Sign language interpretation
  4. Live notetaking service
    A professional is on site to provide meaning for meaning text transcription, that services a similar function as live captioning. This will be projected on a secondary screen in front. This can also be accessed by deaf-blind attendees who uses a Braille machine.
  5. All media materials are captioned.
  6. Visual description are incorporated into presentations for the blind
  7. Environmental considerations for those with sensory differences
    • We will not be playing any background music
    • We will write more text in our PowerPoint
    • We will avoid using harsh lightning
    • We will avoid setting the sound volume too high
    • We have designated three quiet areas near the venue for attendees to take a break from sensory overload

Due to limitations in our control over the venue, we would like to remind and encourage attendees to bring their own calming tools such as headphones, shades, stim gadgets etc.

Caretakers who bring children are to be seated in the last three rows of the Lecture Theater, where volunteers will assist them with caretaking. Due to safety and personal liability concerns, our caretaking volunteers are unable to provide child minding services. We do have designated quiet areas where we can escort participants to, but the parents must stay with their child(ren) in these areas.

 

Photography and Videography Notice

We will be taking photos and recording video during the event.

By entering the event premises, you waive all rights you may have to any claims for payment or royalties in connection with the publication of the Materials. You also waive any right to approve any photographs and video recording taken by the Committee or the person or entity designated to do so by Committee.

You release the Committee and its working team and representative, and each and all persons involved from any liability connected with the taking, recording, or publication of photographs and/or video recordings.