Yenn has some very good points about how ableists treat people with disabilities – often in ways that are infantilising insulting or demeaning. I don’t view myself as disabled, but there are certainly times when society effectively disables me. Unfortunately many fully-abled people don’t realise how ableist their words and actions can be…
I recently had an unpleasant experience where a person gave me a hard time for using the accessible seat on the bus. I need to have two seats to myself due to sensory and proximity issues related to my autism. Apparently – according to this person – I didn’t ‘look disabled enough’ to use this […]
It’s still (just) April in parts of the western hemisphere and I’ve only just now stumbled across this (in my opinion) well written article, so I have no hesitation in reblogging it at this point in time. Anna writes what I have felt for some time but have been unable to put my thoughts together on this matter. Thank you Anna for explaining what I feel deeply.
It is, thankfully, nearly the end of another month with Aprilness. Another Autism Awareness Month – or as the ever-so-slightly-more enlightened have started to call it, Autism Acceptance Month. These are not labels chosen by the Autistic community (and I use a capital A here intentionally). This month of awareness- or acceptance-raising isn’t something any of us asked for.
No, I’m not referring to the ability of pathogens to become resistant to vaccines. Rather, I’m referring to those people who are resistant or hesitant about being vaccinated – particularly regarding covid. Many who understand the wisdom/necessity of taking precautions to limit the spread and harmful outcomes of the current pandemic, take a dim view of those who hold a different view. In fact some comments by otherwise intelligent people indicates that they have little to no sympathy for the unvaxxed, even wishing the unvaxxed succumb to covid as such fools don’t deserve a place in society.
While I have at times felt frustration towards those who fail to understand the benefits of health measures such as vaccinations, masks and social distancing, I do understand that how people think about various aspects of their lives are not usually based on willful ignorance. There’s usually many aspects of one’s background and experience that goes into how we develop the perspectives and attitudes we hold. An obvious example is how I, and most autistics, perceive and think of autism compared to those who are not autistic.
When it comes to resistance and hesitance towards vaccinations, there does appear to be more at play than stupidity. The University of Otago’s Dunedin Multidisciplinary Health & Development Study – an ongoing longitudinal study of children born in the city of Dunedin in 1971-1972 indicates that adverse childhood experiences (ACE) are the most solid indicator of whether or not one is likely to be resistant or hesitant to vaccination.
At the extreme end they may have been sexually abused, been exposed to extreme violence, or psychological abuse. Others have been neglected, grown up in chaotic environments, left on their own or isolated in school. The study, now 50 years in the making, has shown that victims of ACE end up being slow learners at school, and by their early teens have concluded that their health outcomes are not under their own control.
By their late teens, it is apparent that they dropped out of education early, and have a below average reading ability. They are also suspicious of the motive of others, and tend to misunderstand information when under stress. By the age of 45 they are likely to have a lower socioeconomic status, be less verbally adept, be slow information processors, and have less practical health knowledge.
What perhaps is significant is that victims of ACE see themselves as nonconformists who value personal freedoms over social norms, whose distrust of authority figures runs high. And herein lies a problem. Measures to counter the pandemic, be they mandates or advisories are viewed with suspicion. The time for reasonable dialogue is long gone – by 30 or more years. When study participants were 15 years old, they were asked to complete a checklist of “things you want to know more about if you are going to be a parent”. 73% checked immunisation. That was when the discussion should have taken place.
Let me quote from the findings of the longitudinal study regarding vaccine resistance and hesitancy:
Today‘s Vaccine Hesitant and Resistant individuals are stuck in an uncertain situation where fast-incoming and complex information about vaccines generates extreme negative emotional reactions (and where pro-vaccination messaging must vie against anti-vaccination messaging that amplifies extreme emotions). Unfortunately, these individuals appear to have diminished capacity to process the information on their own. The results here suggest that, to prepare for future pandemics, education about viruses and vaccines before or during secondary schooling could reduce citizens‘ level of uncertainty in a future pandemic, prevent ensuing extreme emotional distress reactions, and provide people with a pre-existing knowledge framework and positive attitudes that enhance receptivity to future health messaging. Moreover, many of the factors in the backgrounds of Vaccine-Hesitant and -Resistant Dunedin participants are factors that could be tackled to improve population health in general, such as childhood adversity, low reading levels, mental health, and health knowledge.
Deep-seated psychological histories of COVID-19 vaccine hesitance and resistance (unedited version) – Dunedin Multidisciplinary Health and Development Research Unit, University of Otago, Dunedin, NZ
As always, the Dunedin longitudinal study provides a unique insight into significant aspects of a cohort of individuals born in 1971 & 1972, and the findings pose as many, if not more questions than they answer. With regards to handling future pandemics (and there will be future pandemics), this particular survey points to what needs to be done. What it can’t do is provide leads into how it might be done. Any suggestions?
Up until very recently, autistics have been excluded from the field of autism research apart from being subjects. Research by, and input from autistics has largely been ignored, and the interpretation of research data has been largely in the hands of non-autistic researchers. Gradually, ever so slowly, there’s the beginning of the realisation that neurodiversity is not a pathology, but part of the natural diversity of the human species. And in this respect it’s pleasing to see the Lancet Commission on the future of care and clinical research in autism is recognising that autistics should be collaborators instead of just subjects.
However the Global Autistic Task Force on Autism Research (a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people) has identified areas where there are shortcomings leaving autistics marginalised once more. I thank Lyric for bringing this to my attention, and I urge everyone to consider carefully the concerns expressed by the task force. I will do my bit by letting the Lancet commission know my views.
I STRONGLY URGE others to publish, share and cosign the original message below as I have done, as well as send a message to Lancet. We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic…
For a great many of us on the spectrum, Autism Awareness day/month in April is less than helpful especially in the form promoted by Autism Speaks – a “support” organisation that definitely does not speak for Autistic people. Instead, Autistic Pride Day (June 18) is the day to show the world we are not inferior but just equal and different. I might have something more to say on the day that is more relevant to my personal experience, but here is a post by Yenn Purkis that I believe most neurodivergent people (not just autistics) can relate to.
Friday June 18 is Autistic Pride Day so I thought I would write a blog post all about autistic pride. Sometimes people say ‘why would you be proud? You can’t help being autistic. It just is.’ I think for members of marginalised groups, like Autistics, pride is a political act and a way of asserting […]
In the unlikely event that you are unaware, April is Autism Awareness Month. You may see slogans such as “light it up blue” and others promoted by an organisation inappropriately named Autism Speaks. What it doesn’t do is speak for the autistic community, and in the eyes of most adult autistics it does more harm than good.
Below is a video clip created for Autism speaks in (I believe) 2016. While their rhetoric has been toned down in recent years, I see no evidence that their attitude towards autism has shifted one iota. It depicts people such as myself causing irrevocable damage to families and that we as autistics have very few prospects of living a rewarding life unless we are “treated” or unless a “cure” is found.
I’m not bothering with a transcription for this clip as the voices are American and consequently Youtube’s subtitling of the clip is quite accurate. So for those who wish to read read along, please turn on Subtitles/Closed captions.
Here are some appalling statistics related to people who are autistic. These are statistics from Australia, but in all “developed” nations you’ll find the situation is similar. It’s important to understand these are not inherent in autism itself, but are entirely due to the way society treats those with autism. If you think racism is harmful, what do these statistics tell you about ableism?
About 60% of adult autistics are underemployed or unemployed
87% of autistics have a mental illness
autistic people are nine times more likely to die by suicide than the general population
autistics have a life expencey of 54 years
We deserve better.
We don’t need to be cured. There’s nothing wrong with us. As suggested in the next video clip, perhaps neurodiversity is important in maintaining a healthy and sustainable cognitive environment in the same way as biodiversity is important in maintaining a healthy and sustainable physical environment. What is very clear to autistics is that current social attitudes towards autism is harmful. It’s not us as individuals that need curing. What is needed is a paradigm shift in how society views neurodiversity
A transcription has been prepared by Theresa Ranft and reviewed by David DeRuwe, so for those who find the Australian accent difficult or for those with hearing difficulties, please turn on Subtitles/Closed captions.
About the speaker Jac den Houting:
Being diagnosed with autism is often seen as a tragedy. But for Jac den Houting, it was the best thing that’s ever happened to them. As an autistic person, concepts like the Neurodiversity paradigm, the Social Model of Disability, and the Double Empathy Problem were life-changing for Jac. In this talk, Jac combines these ideas with their own personal story to explain why we need to rethink the way that we understand autism. Jac den Houting is a research psychologist and Autistic activist in pursuit of social justice. Jac currently holds the role of Postdoctoral Research Associate at Macquarie University in Sydney, working alongside Professor Liz Pellicano. In 2015, Jac was awarded an Autism CRC scholarship to complete their PhD through the Autism Centre of Excellence at Griffith University in Brisbane. Prior to this, they gained almost 10 years’ experience as a psychologist in the criminal justice system, with the Queensland Police Service and Queensland Corrective Services. Jac was identified as Autistic at the age of 25, and is proudly neurodivergent and queer. After participating in the inaugural Future Leaders Program at the 2013 Asia Pacific Autism Conference, Jac quickly became established as a strong advocate for the Autistic community. Jac is a current member of the Autistic Self Advocacy Network of Australia and New Zealand (ASAN-AuNZ)’s Executive Committee, the Autism CRC’s Data Access Committee, Aspect’s LGBTQIA+ Autism Advisory Committee, and the Aspect Advisory Council.
Over the last month I have been attempting to coalesce some rather vague notions revolving around community, individuality, inclusion, diversity, language, and power. I have had four partly written posts that I just have not been able to complete. Then I happened across the post linked to below, and I though why re-invent the wheel, when there’s a perfectly good one is staring me straight in the face (apologies for the mixed metaphor).
Who has power, and how do they wield it in their words and actions, especially in a crisis?
I find I’m sharing a lot of Michael’s posts. This is another I think is deserving of a wider circulation.
It’s just a number, one of a several which struck me over this last week. We have all, here in New Zealand and in the wider world, felt the impact one way or another, of the attack in Christchurch on a small segment of our society. Until that fateful Friday there were an estimated 50,000 […]
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