The silo mentality of autism organisations affects even researchers from esteemed universities, who were ignored when they sought to collaborate. The unwillingness of these organisations to grant access to their clients results in the researchers having to spend much effort to recruit participants independently, resulting in less reliable research due to very small sample sizes.
To ensure effective autism research, we can create an open-access candidate pool that allows researchers to bypass reluctant organisations to reach the autism community directly. Also, we can also set up a shared dataset so that authorised researchers can build off each other’s findings by being able to cross-compare anonymised individuals across different studies to gain new insights. Such community collaborations will allow us to build an international alliance of researchers who can coordinate their research focus and potentially make many breakthroughs that will improve the lives of autistics.
For example, there is currently a lack of research on female autistics in Singapore, perhaps because it is extremely difficult to find enough of them to do a serious study. Questions such as if autistic women experience more sensory sensitivities and meltdowns when they age could not be answered. If we have direct access to the local autistic community plus their counterparts in other Asian countries, we will be able to conduct such studies.
There is a need for research to develop solutions such as using nutritional supplements and time management systems to help overcome the difficulties that autistics 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. Hidden autistics can provide a valuable wealth of diverse solutions.
Potentially sustainable solutions to the issues that affect many autistics include:
- The use of low-cost nutritional supplements to combat chronic fatigue, poor immune health and emotional disturbances
- The use of audio dampening or processing equipment to combat environmental noise
- Developing a simple automatically synchronised system for keeping track of tasks to do
Another untapped resource is that of community researchers (a.k.a. citizen scientists). Everyone from the community will be able to propose ideas and conduct research to test these ideas if they can make use of the research pool to quickly recruit participants. For instance, starting a survey like this:
Autistic Career Development Study
- Target: N=30 autistic adults without intellectual disabilities
- 7-point Likert scale with open-ended questions with max 100 items
Objective 1: Confirm sufficient interest in Leadership Training
- Are they keen to commit time and effort to this idea?
- Each Team should have >3 people (accounting for possible dropouts)
- Are they open to having non-autistic classmates signing up with them?
Objective 2: Obtain profile and needs of potential signups
- What is their life situation (e.g. employment, finances, living conditions, family relationships)?
- What are their life goals, skills and interests?
- What is their attitude towards life? Do they accept Inclusive Equality?
- Prefer weekday night or weekend? Are they studying part-time too?
- What do they wish to achieve for themselves and their community?
Objective 3: Find out about existing support/accommodation
- Are they using any support services? Are these helpful?
- Do they have someone who is actively supporting them?