24 July 2020
Autistic-led Organisations Australia (ALOA) Submission to Select Committee on Autism
Thank you for the opportunity to present our submission to the Inquiry of the Senate Select Committee on Autism. We would welcome the opportunity to present this submission in person.
The following ALOA Submission to the Senate Select Committee on Autism relates to the specific issues connected to “Project Eleos”. As a background to our submission, we include here an open letter from February 2020, outlining Project Eleos and our collective concerns. This letter underpins our submission, which can be found on pages 4 and following.
19 February 2020
To Whom It May Concern,
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.
BACKGROUND TO OUR SUBMISSION
“When people with disabilities come to the conclusion that they have the right to be in the community, to have a say in how that community treats them, they are beginning a consciousness about taking control of their lives and resisting all attempts to give others that control”
- Ed Roberts, Founder and President, World Institute on Disability
Ed Roberts died 35 years ago yet Autistics today are still facing direct discrimination from those who talk over us, steal our narratives, and profess to speak for us.
We also face indirect discrimination when we are excluded from decisions that directly impact our lives. These decisions include, but are certainly not limited to, the decision to train first responders and police without due consultation with the Autistic community themselves, and the decision to prioritise and pilot a system of public branding without any consultation.
Disability rights are human rights. As per the guiding principles of the United Nations, we, as Autistic individuals, are entitled for our voices to be heard in whatever capacity or form we can give them. Our rights include:
- A respect for our inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of person,
- Non-discrimination,
- Full and effective participation and inclusion in society,
- Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity,
- Equality of opportunity,
- Accessibility,
- Equality between genders, and
- Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their privacy and identity.
Our Submission focuses specifically on our absolute and inalienable right to disclose (or not disclose) publicly our diagnoses, including Autism, and our equally inherent right to not be branded or publicly ‘outed’ as Autistic.
We also have the right to expect that the professionals with whom we come into contact, including first responders and the police, are adequately and respectfully trained in understanding Autism and Autistic needs, and that they do not rely solely or in part on misleading visual cues that could make us targets for harassment and predators.
It is the unfortunate truth that most Autistics who come into contact with the police are not criminals but are rather victims of crime. It is vital, then, that police have adequate training in recognising and responding appropriately and respectfully to Autistic individuals. It is only through education and training that we will avoid mistreatment like that recorded by this adult female Autistic (aged 25-39 years):
Once I disclosed my diagnosis, they treated me like a child and made me report sexual offences committed against me on video because they said I am an unreliable witness. Which is bullshit. I now do not disclose anything to police. (Gibbs & Haas, 2020.)
Autistic adults also express concerns that Autistic people are likely to feel stigmatised or embarrassed by mandatory disclosure of their Autistic identity to police, because of inadequate police training. They note that police perceptions of Autistic people seem often to be based on common myths about Autism, for example, that all Autistic people are violent or unable to communicate, or that Autism is a mental illness:
When [I was] a victim of an accident, I was advised to not disclosed I was Autistic or I would be asked why I did not have a carer with me on the day of the accident. I was not the driver.
Our recommendations are that:
- Contact officers, much like the Gay and Lesbian Liaison Officer (GLLO Program) for the LGBTQIA+ community, are employed to assist police and other first responders to connect and work with the Autistic community. These contact officers would be representative of heterogeneity that is characteristic of our neurodiverse community. They would be instrumental to the development of policy and training nationally,
- Such comprehensive training, which would be co-produced with Autistic adults, could thus be developed to replace any reliance on a visual symbol intended to ‘alert’ first responders to a person’s Autistic identity,
- A visual symbol to indicate Autistic identity is a violation of rights and should be prohibited, especially when that symbol is in fact a corporate brand with corporate sponsors,
- Any marketing of this symbol towards Autistic children and often vulnerable parents cease immediately,
- The Autistic community elect representatives to inspect the existing training that has been developed to accompany the use of the visual symbol. This point is especially salient, since we have been unable to find any policy or statement on the NSW Police Website and the training thus has no current transparency, and
- The Privacy Policy for obtaining medical information on minors is made public so the community can assess if informed consent can be rightly given.
As well as our open letter above, we also attach our petition for your consideration.
References
Gibbs, V., & Haas, K. (2020). Interactions Between the Police and the Autistic Community in Australia: Experiences and Perspectives of Autistic Adults and Parents/Carers. Journal of Autism and Developmental Disorders. doi: 10.1007/s10803-020-04510-7