Another Spectrum

Personal ramblings and rants of a somewhat twisted mind

Tag Archives: privacy


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Stop the National Autism Registry – Speak Up for Inclusion and Diversity

I’m not the only person concerned about RJK Jr’s proposed autism registry. A recent “Urgent Autism Registry Update” published by Resiliency Mental Health has raised alarm bells about plans to create a national autism registry in the United States. The article details how such a registry may not only threaten the privacy and rights of autistic individuals, but also undermine the values of diversity and inclusion that we cherish. It provides a letter template and a petition that invites everyone—especially autistic allies and those who value diversity—to take a stand against this proposal.

The update also draws attention to state-based autism registries, which are by no means a benign alternative. Much like a national registry, state systems pose serious risks to privacy and can equally be misused. In other words, the issues are not resolved by simply shifting the scope from national to state level. You can read more about these problematic state-level systems here.

There’s also a deeper concern: should a nationwide registry be implemented, it could lead to a significant drop in the number of people seeking an autism diagnosis due to concerns of individuals and care givers over privacy and human rights for autistic people. This decrease in diagnoses might then be touted as evidence that the registry has “worked,” masking serious issues instead of addressing them.

If you stand for diversity and the rights of every individual, please consider adding your name to the petition here, or send a letter or email to your legislators. Your voice is vital in ensuring that such policies are critically examined and that the human rights of autistic people are safeguarded.

Let’s work together to promote a more inclusive society where data and policies empower people, rather than marginalise them.


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Autistic Registry? A Dangerous Proposal That Threatens Inclusion and Diversity

Robert F. Kennedy Jr.’s registry proposal must ring alarm bells for all Americans—not just autistic people.
Reports indicate that the plan is to establish a national autism registry by collecting private medical records for research purposes. The stated goal is to study the causes of autism, with Kennedy incorrectly describing autism as a “preventable disease” and expressing intentions to find a “cure.” I am quietly outraged that this proposal is being considered at all.

A proposal fraught with danger.
This initiative has already sparked significant backlash, particularly from advocacy groups like the Autistic Self Advocacy Network. Critics warn that such a registry could lead to misuse, stigmatisation, and breaches of privacy. There are also serious concerns that this approach echoes eugenic practices and could be used to marginalise autistic people rather than empower us.

A worrisome precedent.
The UK Spectrum 10K DNA collection controversy offers a poignant parallel. Even voluntary research efforts have faced resistance when they fail to address the legitimate concerns of the communities involved. Imagining a shift from voluntary participation to a compulsory registry is, frankly, terrifying—it only heightens the risks and bypasses the crucial dialogue needed for truly ethical research.

Why all Americans should be alarmed.
Autistic Americans are absolutely right to be worried, and so should everyone else. A compulsory registry for autistic people sets a dangerous precedent not only for us but for other minority groups as well. Historically, data collections imposed without full, informed consent have served as instruments of control, not empowerment. Our rallying cry, “Nothing about us without us,” reminds us that autistic individuals must have agency over decisions that affect our lives.

The slippery slope of surveillance.
Even if presented as a research tool, such a registry could quickly slide into a system where sensitive data is exploited. There is a real risk that it would reinforce harmful narratives—portraying autism as something to be cured rather than as a naturally diverse way of experiencing the world. What might begin as a seemingly well-intentioned project could later be co-opted to justify exclusionary and coercive measures, echoing past abuses where scientific authority undermined individual rights.

Learning from past initiatives.
Voluntary research initiatives like the Spectrum 10K project in the UK have shown that even well-meaning projects demand careful design and genuine input from the communities they affect. The possibility that a registry could become mandatory is particularly alarming because it sidesteps the necessary trust-building and dialogue fundamental to ethical research. It’s ultimately a question of power—deciding, without our direct voices, what is deemed a problem to be fixed rather than an identity to be respected.

A call to reimagine autism research.
In my previous articles, I have insisted that research must serve the people it studies rather than imposing external definitions of what is “normal” or “desirable.” I offer a transformative vision that shifts away from reductionist, medicalised views of autism toward an approach that is inclusive, respectful, and empowering. Now, at this critical moment, it’s important to remind researchers and decision-makers of these points:

  • Humanising Narratives:
    Researchers must move away from purely medicalised models and recognise that autistic experiences are rich, varied, and constitute a legitimate way of engaging with the world. By adopting social and neurodiversity frameworks, they can focus on understanding the environmental, cultural, and systemic factors that impact our lives. This approach validates our lived experiences and challenges the notion that autism is simply a pathology to be “fixed.” It means recognising the diverse ways in which we communicate, relate, and excel.
  • Inclusion of Autistic Voices:
    “Nothing about us without us” is more than a slogan—it demands the active participation of autistic people in every step of the research process. When autistics help design studies, interpret data, and share findings, research gains critical insight and credibility. Such participatory models bridge the long-standing gap between researchers and our community, ensuring that findings reflect lived realities rather than assumptions or stereotypes.
  • Addressing Quality of Life:
    Research should prioritise studies that genuinely improve the quality of life for autistic individuals. This includes looking at social support, employment, education, and overall wellbeing. Instead of solely focusing on “curing” or “preventing” autism, researchers need to identify and dismantle the barriers that lead to negative outcomes—acknowledging that the goal isn’t to normalise autistic behaviour against a neurotypical standard but to enhance supportive, community-based systems that respect individual differences.
  • Challenging Ableism:
    Language matters. When terms like “cure” or “prevent” are used in reference to autism, they reinforce an ableist framework that sees neurodiversity as inherently flawed. Using language that recognises difference as natural—and even beneficial—helps combat the stigma that many autistic people face every day. This shift in narrative is essential for both a more inclusive research culture and public policy that promotes respect and understanding.
  • Rethinking Interventions:
    Interventions must be built around the preferences and consent of autistic individuals. Rather than imposing a one-size-fits-all solution aimed at normalisation, healthcare and educational practices should focus on personalised strategies that emphasise wellbeing, empowerment, and self-determination. True support comes from partnering with autistic people rather than imposing external expectations.

In conclusion.
I hope these calls to action convey a vision for research that is collaborative, respectful, and fundamentally human-centred. Studying autism must always begin by recognising the agency, dignity, and expertise of autistic individuals. Not only do these principles safeguard against potential abuses—such as a compulsory registry that could be misused—but they also pave the way for research that genuinely improves lives by embracing our diversity.


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To trace or not to trace, that is the question.

Aotearoa New Zealand has, for now, eliminated the virus causing COVID-19. It’s eliminated as there is no community infection, and the occasional one that appears is related to a known cluster, where the person involved is already in isolation, or the person has recently returned from overseas and is in a supervised quarantine facility.

One aspect of controlling the virus has been the success of contact tracing, which has improved considerably since the beginning of the outbreak, especially after the process became centralised instead of being the responsibility of each of the nation’s 20 health authorities.

In this this nation, contact tracing has relied on a call centre “interviewing” persons who are confirmed or suspected of having COVID-19 and then contacting known or likely contacts. Unlike in Australia, Singapore and Korea, the process has not been automated through the use of technology such as smartphone apps.

There are a number of reasons why we haven’t adopted technology to assist in tracing contacts. The most obvious is privacy. Many of those offering a smartphone solution rely on Bluetooth and the transmission of contact information to a centralised database, both of which pose security and privacy issues. Bluetooth is inherently insecure, and I never have Bluetooth enabled unless I wish to transfer data specifically with another Bluetooth device belonging to someone I know and trust.

As Bluetooth cannot discriminate on the type of proximity to another device (on opposite sides of the same room or right next to each other but in adjascent and isolated rooms for example), most of the “contacts” are irrelevant or red herrings. Bluetooth also requires a high level of trust between devices, and this is not something I’m prepared to give up.

Perhaps automating a contact history might be useful in nations where community transmission of the virus is widespread, provided there is a means of separating the wheat from the chaff that will invariably result by such a collection system. But in the case of Aotearoa New Zealand, where their is no community transmission, any advantage is outweighed by security and privacy concerns.

However, today is the official release of a government approved app that also meets my approval. I downloaded it last night and am comfortable about using it.

The app makes use of QR codes that business establishments can set up at entry points, which you can voluntarily scan as you enter the premises. The data is stored within the phone only and is not transmitted in any form, but can be voluntarily transmitted to contact tracers on request. Data older than 31 days is automatically deleted.

In effect, the app is a personal “places I visited diary”, and as such I am comfortable using it. Unlike almost every other app this one does not need or request access to any smartphone service apart from the camera (to capture the QR code). What it lacks is any means of entering any locations that don’t have a QR code available to scan, and this is a serious weakness in my view.

I had been using my phone’s GPS and the Google Map Timeline to record my movements in case they were needed to trace my movements. But it is very unreliable both in recording where I’ve been and at what time. For example this morning I left home just before 11 AM and visited two locations. I was back home by 11:30.

The Google Maps timeline has no record of me being at the first location, but records me leaving home at 12:06 AM (10 hours and 51 minutes before I actually did), arriving at the second location at exactly the same instant. However, it did accurately record the time I left there, and the time it took to travel home, although it recorded that I arrived at an address three sections (properties/lots) away from home.

Yesterday, it recorded that I visited two places several blocks away, even though I never left home. The last time I visited the supermarket, it recorded the time I spent there as travel time between two other locations I passed by but didn’t stop at. Go figure.

While the typical Kiwi probably trusts our authorities more that the typical American trusts theirs, it’s not unconditional, and I believe the official NZ COVID Tracer does not require much in the way of trust while still being a useful tool in contact tracing if the need arises. I think on that basis, it’s uptake will be greater than if it relied on connectivity and/or external data storage.

One issue is finding the App on Google Play. You can’t. I don’t know what the situation is with Apple’s App Store. Searching for COVID tracers, results in only the official WHO apps being located, even if “NZ” or “New Zealand” is included in the search terms.

It seems that Google is filtering out every tracing app apart from the WHO Apps, probably due to there being a high probability of them being intentionally or unintentionally being open to abuse. Even typing in the app name “NZ COVID Tracer” does not locate it. The only way I could find it was to go to the Ministry of Health NZ COVID Tracer app Webpage and click on the link provided there. Thank you Google (not!)

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