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Open Letter from ALOA

Response to Project Eleos

The Autistic Self-Advocacy Network of Australia and New Zealand (ASAN-AuNZ) is the peak self-advocacy body for Autistic people. They provide public policy advocacy and information about Autism, disability rights, and systems change through educational, cultural, and advocacy-related projects.

The Autistic Realm Australia (TARA) is an Autistic-led charity facilitating authentic Autistic connections and supporting Autistic people and parents/carers in self-advocacy through peer-to-peer education.

Reframing Autism (RA) is an Autistic-led charity, the purpose of which is to respect, accept, embrace and empower the Autistic community through education and support.

Founded and run by Autistic people, ASAN-AuNZ, TARA and RA are respected representative bodies for the Autistic community.

Recently we became aware of a charity called “Spectrum Support” and their involvement in a proposal named Project Eleos. We have consulted with our collective members and are extremely concerned by several aspects of Project Eleos.

We understand that the intention of the Project Eleos Talisman is to be a symbol that is “instantly and globally associated with Autism” (as stated on the Spectrum Support website), especially by first responders including the police.

Our concerns about the Talisman are many.

Regarding the public wearing of an identifying symbol:

  • If the Talisman was to become “globally synonymous with Autism”, then, like any other identifying symbol or marker, it would enable and encourage public recognition and profiling of Autistic and neurodivergent individuals.
    Many Autistic adults are uncomfortable disclosing their neurological status publicly due to past stigma and discrimination and would therefore be disadvantaged if they chose not to wear the Talisman.

  • Autistic children are unable to give informed consent to disclose publicly their Autistic identity.  Research has shown that Autistic individuals are at a greatly increased risk of sexual, physical and emotional abuse, and that the Autistic community has an increased susceptibility to being “groomed” by potential abusers. It is deeply worrying, then, that children will be identified as Autistic by this symbol, since it effectively marks them as vulnerable targets to potential abusers.

  • Medical bracelets (which are globally recognised) are available already which can identify a person as Autistic, along with any other co-occurring conditions. These medical bracelets, however, do not automatically identify a person as Autistic to the general public, and therefore respect the privacy of the individual.

Regarding the lack of consultation with the adult Autistic community:

  • Spectrum Support is a charity created and run by non-Autistic mothers of Autistic children.  As far as we can ascertain, there was no consultation with the adult Autistic community regarding Project Eleos.  Non-Autistic individuals do not understand the experiences or emotions of Autistic people and are therefore unable to consider the issue from the perspective of an Autistic person.

  • Furthermore, many statements about Autistic people on Spectrum Support’s website show disputed and outdated theories which have been criticised by the Autistic community for decades, and, more recently, have been discredited by research. We therefore do not believe that Spectrum Support has the capacity to provide training which will adequately understand, represent, or speak for Autistic experience in 2020 and beyond.

Regarding the symbol itself:

  • The Talisman symbol is in fact the Spectrum Support company logo, and not a symbol recognised or accepted by the Autistic community.  This appears to be more in the line of a widespread and publicly-sanctioned marketing campaign by Spectrum Support, and as such represents a conflict of interest by the service provider.

  • The Autistic community already has recognisable and accepted symbols which we have developed as a community (e.g. the rainbow lemniscate or “infinity” symbol).  We do not accept any symbols pressed on us from outside the community (e.g. this logo, the puzzle piece).

Regarding the program:

  • Whilst Spectrum Support claim that they are the global pioneers of this system, the reason for their ostensible innovation is not that the idea of identification branding has not been explored in other countries, but rather, that it has been rejected as antithetical to best practice, and tantamount to a breach of privacy, dignity and human rights. Best practice requires systemic education and training about Autism, mental health, and other neurodivergence and the diverse way these present in high-stress environments.

  • The training for Project Eleos is drawn from the Safe and Sound program designed by Americans for the American police force. Substantial revision would be required before this training could be delivered in Australia, since the cultural context, the demographics, and the history between citizens and police is very different between Australia and America.

  • In 2015 there were approximately 164,000 diagnosed Autistic Australians.  With improvements in the recognition and diagnosis of Autism, it is acknowledged that a significant percentage of Autistic people remain unidentified.  Using the current CDC estimation of Autism prevalence [1/59], this means that over 400,000 Australians would meet diagnostic criteria for Autism. In other words, more than half of Autistic Australians are not identified as Autistic.

    If police and other first responders are relying on wristbands to identify Autistic people, there is a strong chance of complacency through developing reliance on a visual cue or “branding”, rather than on training.  Around half of the estimated Autistic population, then, would be significantly at risk, even if all those who have an Autism diagnosis wore the Talisman.

Summary:

Every person, Autistic or not, and with or without mental illness (diagnosed or undiagnosed), should be able to trust that police and emergency services will treat them with the dignity, empathy and respect that they deserve as their basic human right, and that these personnel will have adequate training to be able to de-escalate a high-stress situation regardless of identification with a particular neurotype, mental health, disability, ethnicity, religion, or any other factor. This respect should be extended to all people, regardless of their neurotype.

We argue most emphatically, therefore, that funds would be better spent accessing appropriate Autistic advocates to educate emergency services staff, rather than identifying and singling out an individual minority group.

Research is clear that the Autistic community is much more susceptible to experiencing co-occurring physical, neurological and mental health complications than other communities. For those individuals who are multiply neurodivergent, multiply disabled, or who have mental illness in addition to their Autism, the Talisman has the potential to do great harm by identifying them simply as Autistic. It is an unnecessarily reductive approach to best practice.

We therefore recommend in the strongest terms that this project and training be halted before it proceeds any further.

We also recommend genuine consultation with the Autistic community (that is, with individuals who are themselves Autistic) be undertaken, and that any future initiatives be guided first and foremost by the Australian Autistic community themselves, rather than by non-autistic charities.

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