Masterplan » Strategic Issues » 1a) Hidden Autistics & Caregivers

Hidden autistics are typically the pioneer group of autistics who were born in an era before autism awareness arrived, and thus were unable to benefit from the awareness and supports we take for granted today. They are to the Autism Community what Dark Matter is to modern astronomy – we know that they exist, but we have no idea who they are exactly.

Many of them have managed to adapt to mainstream society (and even start families) by finding their unique ways to thrive. They are the engineers, programmers, doctors, lawyers, psychotherapists, educators and other professionals who think differently. Those who do not adapt tend to become misfits who are unable to integrate with society to live a healthy and meaningful lifestyle. They are the eccentric and creative people who others find hard to classify.

 

With no need for external support, many successful autistics also hide their autism diagnosis as they do not wish to experience the stigma associated with autism. Openly autistic people must be prepared to face subtle discrimination including negative publicity and insurer rejection when they try to advocate for the community.

If only the Hidden Autistics are willing to openly identify themselves, they can overturn the negative misconceptions of autistics being dysfunctional and lonely people who cannot achieve success. They would also be able to guide the younger generation of autistics towards a better future. To have a good chance of success, any serious efforts to create a breakthrough for the autistic community must find a way to engage and deploy this strategic hidden resource.

A key reason for publishing this Masterplan publicly is to invite these people to publicly identify as autistic and take ownership of supporting the next generation of autistics by participating in the exciting initiatives.

 

A counterpart to the Hidden Autistics is the Hidden Caregivers who refuse to acknowledge the needs of their autistic children with low support needs. A common scenario is their adult children receiving an autism diagnosis after developing mental health issues during tertiary education.

This type of caregiver refuses to join autism support groups, insisting that their children will eventually “overcome autism” with sufficient willpower and effort. As a result, they are cut off from important developments in the autism community and awareness of how to support their children.

Some may insist that their children focus solely on academic pursuits and cut themselves off from any “distractions” such as online communities and hobbies (which seem frivolous but are essential mental health support). As a result, they find out later that their children become unemployable not only because of autistic behaviour but also severe mental illnesses.

Some may bankrupt themselves trying expensive supplements and therapies provided by pseudoscience “doctors”. Others give up and let their children indulge in video games hikikomori style, never leaving their homes or finding employment.

 

To address these issues, we need to urgently develop affordable community mental health support led by openly autistic people. These autistics can provide wholesome and positive role models while encouraging other autistics to come forward to disclose their autism.

Autism awareness campaigns must also target Hidden Caregivers who deliberate ignored typical autism awareness messages. In addition, we have to call out anyone in the mass media who portrays autism misleadingly or negatively so that they do not damage autism advocacy work and stop Hidden Autistics from going public about their autism.

 

Autism Disclosure Spectrum (ADS)

  1. Knows about autism, but denies self has it
  2. Suspects self is autistic but refuses to admit it
  3. Admits self may be autistic but refuses diagnosis
  4. Diagnosed; secret to self only
  5. Diagnosed; shares with a few close people
  6. Diagnosed; shares on a need-to-know basis
  7. Diagnosed; shares within selected social circles
  8. Diagnosed; shares with all social circles and the mass media about diagnosis
  9. Diagnosed; advocates actively for autism

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