Autism quote

Never a more true sentence has been written!

Autism is a disability but only because we are trying to function in a world that is not built for us and refuses to accommodate our different needs.

Autism – Given up but I’m trying – 2022/08/24

Things ableists say — Yenn Purkis Autism Page

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 […]

Things ableists say — Yenn Purkis Autism Page

Legislative diversity

I started this post way back in November 2020 shortly after the General Election, but never quite got round to completing it. I wanted to make the point that some sections of society are still excluded from decision making processes that affect them, but as often happens for me, it morphed into something no quite as I intended. So it’s been sitting on the shelf until I decided what to do with it. I’m still not sure if it’s worth publishing, but it’s either that or bin it. I’ve chosen the former.

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It’s a fact of life that most legislatures around the world are scarcely representative of the population they represent. For example, in most western democracies, wealthy males with sometimes tenuous connections to Christianity are over represented, while women, minority groups of all types and youth are underrepresented.

For some, this is the “natural order” and they see nothing wrong or untoward with this situation. Others keenly feel that in order to have all voices heard, it is necessary that diversity in the makeup of the legislature should approximate that of the community from which it is drawn. I lean towards the latter. But it would seem that most people here have no opinion one way or the other in this matter. Perhaps in this nation it might be understandable, but is it desirable?.

Disability

Aotearoa New Zealand does better than many other nations when it comes to diversity within its legislature, although we still have a long way to go. One example would be that approximately one on four or one in five Kiwis (depending on the measurements chosen) have some form of disability but no MPs (Members of Parliament) have publicly admitted to having a disability.

Neurodiversity

Of special interest to me is that although somewhere between 5% and 12% of the population is neurodiverse (depending on how you define neurodiversity), as far as I can discover, no MP is neurodiverse.

Ethnicity

People of asian ancestry, most of whom are of Chinese or Indian descent are also underrepresented. They make up 12% of the population but only 7% of the Parliament.

In the October Elections, fewer Māori were returned to the Parliament than in the previous two general elections. In the Previous Parliament, 23% of MPs were Māori. This has now dropped to 21%, but remains higher than the 17% of the general population who identify as Māori. Pasifika people (those from Pacific island nations) too, while making up 7% of the general population, make up 9% of MPs.

Gender

Women have almost reached parity with men. In this country females slightly outnumber males (100:97), and now make up 48% of all MPs. When compared to our neighbours (Australia 31%, Pacific nations averaging 6%) we are doing very well. When we look at gender representation by political party, we see that the parties of the left have more female representation than male, while for parties on the right, the opposite is true.

LGBTQI+

Approximately 4% of Kiwis are openly LGBTQI+ although the real number is most likely higher. Parliamentarians are more forthcoming in this regard as 11% of MPs are openly LGBTQI+. This lead to one British tabloid headlining an article with “NZ Parliament Gayest in World”. Although this nation was the first where an openly transgender person was elected to the national legislature, there are currently no openly trans MPs.

Religion and spirituality

I’m not going to attempt to define what religion or spirituality are as even academics in these fields cannot agree. In fact some definitions are mutually exclusive. In the NZ context it can be confusing. Around a third of the population claim a Christian affiliation, and only 45% of the population claim any religious affiliation according to the 2018 census.

Other surveys indicate that 25% have a firm belief in a deity or higher power and a further 45% believe in some form of higher power to some extent for at least some of the time. Within the Christian community the concept of God ranges from an omniscient omnipotent being to metaphor/personification/symbol representing our highest ideals, and the trend is towards greater polarisation of these opposing concepts.

The consensus among both the religious and non-religious alike is that New Zealand is one of the most secular nations on this planet. Whether one is religious or not, or is affiliated to a religious or spiritual group is usually a private matter, and that applies to politicians as much as it does to the general population.

This makes comparing the religion of the legislature and general population somewhat difficult as the religious beliefs of most MPs is not on public record. However, anecdotally it does appear that parties on the right have a slightly higher proportion of “religious” however that might be defined, than parties on the left. Based on the limited amount of information available, it appears that religion and spirituality amongst MPs is not significantly different from the general population.

Youth

While we do have some MPs in their twenties, and in the past a few have been in their late teens, I suspect this is one form of diversity where the “nature of the job” will means that the young and the old will always be underrepresented. There is a small movement calling for the voting age to be lowered from 18 to 16, and if it ever came to a referendum I’d support it, but for the time being only the Greens consider it a topic even worthwhile discussing.

Quotas

I’m not in favour of quotas to ensure all forms of diversity are proportionally represented, and yet our electoral system (MMP) is based on the premise that political parties should be represented in parliament proportionally based on their support in the voting population. Isn’t this a form of quota based on political affiliation? If we demand proportional representation across the political spectrum, why not across other spectrums of society?

I believe that legislatures should reflect the diversity of those who elect them, although not necessarily in exact proportion to the population. For society to be truly inclusive, everyone should feel that their voice can be heard. For those with a disability and for the neurodiverse, there’s clearly a long way to go. We should be proud of our success in achieving the diversity we have in the Parliament, but let’s not rest on our laurels just yet.

Arresting Ableism; Insight and Experiences of a Nonspeaking Autistic — NeuroClastic

Inside my mind there are a myriad of thoughts about the way autism is perceived and how autistic folk are treated. I have more than a dozen drafts on this subject that I am unable to complete as every time I try I feel a churning in my stomach and my thoughts fly in all directions – so much so that I can not organise them into paragraphs, sentences and words. I don’t know what that churning represents – anger, frustration, impotence – perhaps all of these, perhaps something entirely different. What I can say is that it makes me very uncomfortable, even more so when I’m unable to articulate what I really want to say.

Is is because I lack the language skills necessary to express myself adequately, or is that words themselves are incapable or expressing what I feel? I don’t know. But I do know when someone can articulate what I feel. The following article by Sabrina Guerra, a non-speaking autistic, speaks volumes quietly. Her specific experiences are different from mine, and yet (to use a Quaker phrase) she speaks to my condition.

Wisdom doesn’t flourish impeded by people’s egocentrism. Supremacy reigns unless we fight diligently to educate. Question all that you’ve ingested on a human’s worth. When the rights of abled people take precedence over those of disabled people, our great shame is evident, and we must not consider ourselves a modern, progressive society. I am passionate…

Arresting Ableism; Insight and Experiences of a Nonspeaking Autistic — NeuroClastic

Masks and communications

While most of my readers have been living under various forms of covid-19 restrictions for upwards of eighteen months, for us Kiwis in Aotearoa New Zealand, and especially outside of Auckland it is a novel experience. Social distancing and masks have not been everyday parts of our lives until around 2 months ago when the delta variant finally succeeded in breaching our border security measures and is proving impossible to eradicate, unlike previous variants.

Mask wearing is now mandatory for people aged 12 and over when taking public transport or visiting businesses, and recommended when away from one’s home or “social bubble”. Personally, apart from yet being unable to find a means to avoid the fogging of my glasses, I find my stress level definitely rises to the point where it can’t be ignored after about 30 minutes of continuous mask wearing, and I need to remove it, even if only for a minute, to restore myself to something resembling normalcy. I can usually achieve that by retiring to the car or finding an out of the way park seat or equivalent where the mask can be briefly removed in safety.

However, that’s not the most serious downside to mask wearing. I have always had impaired hearing. I was diagnosed as having 70%-90% hearing loss when I was around 7 or 8. Normally I can get by reasonably well, and when a word or two can’t be clearly recognised, I can usually deduce it by context. It’s only just in the past week that it has really dawned on me how reliant I am on lip reading as an essential component of my ability to understand the spoken word.

I’ve recently had several occasions where it has been necessary to converse with a shop assistant while making a purchase. In one case it was a quiet environment but I was unable to recognise even half the words spoken by the assistant. Often I was unable to understand even the gist of what he said. By the end of the transaction I suspect he was just as frustrated as I was about the slow progress of our conversation. I found the entire process embarrassing and somewhat humiliating.

Later in the week, I visited a somewhat noiser shop where I had gone to pick up some items I had bought and paid for online. Sure I could have had them delivered, but the delivery would have cost more than the products. I’m not a penny pincher, but we do have a fixed and somewhat limited budget to live on. In theory I should have been in and out of the shop inside of a minute, but it was not to be. It didn’t help that the online instructions for collecting online purchases were incorrect for the local branch. In fact it may have been less confusing if there had been no instructions at all.

After waiting at the counter under a sign reading “Collect online purchases here” and seemingly being ignored, I sought out a shop assistant and explained why I was there. To cut a long story short, it took over half an hour to collect my purchase and only then because I finally resorted to seeking yes or no replies or asking them to point or make a specific gesture order for them to communicate with me. At no time did it occur to them to initiate non-spoken communication. I found I had to give specific instructions. Even when I discovered that where I was waiting for my pickup is no longer applicable, and then asking where I should go, no one thought to point in the appropriate direction until I specifically asked them to point with their arm/hand/finger in which direction I should go.

I’m not sure what sort of privileged lives the young people working in that shop have “endured”, but it was apparent to me that they wouldn’t understand the irony of directing a wheelchair bound person to take the stairs to a different floor or instructing a blind person to read a sign painted on the wall. I would have thought that people with disabilities are encountered often enough that most non-disabled folk would have some level of understanding or empathy. Apparently not.

Come to think of it, while I don’t consider being autistic as being disabled, some of the hyposensitivities and hypersensitivities that result from being autistic can be made disabling by a lack of empathy, and sometimes by antagonism in the 99% of the population who are neurotypical. So in hindsight I really shouldn’t be surprised by the lack of understanding or empathy I have received over the past week or so due to no longer being able to augment spoken conversation by lip reading.

Perhaps I am on more common ground with neurotypicals when it come to reading facial expressions of those who are masked. I’ve heard and read many complaints about how much more likely it is to misunderstand someone or be misunderstood when masks cover so much of the face. I’ve queried a few acquaintances about this, and they tell me that it does reduce the amount of non-verbal communication they receive. The amount of perceived loss seems to vary considerably. When pressed, it’s varied from “some” to “heaps” (a lot).

Most people don’t think about how much body language and facial expressions contribute to spoken communication until it’s brought to their attention or they find it missing from others or they realise their own intentions are not always fully understood. The necessity to wear masks is bringing the significance of non-verbal forms of communication to the attention of some of the more socially aware folk.

My own (admittedly very anecdotal) investigation suggests that people rely on the eyes as much, if not more, than other facial expressions. So while a mask can reduce the amount of non-verbal information received, it doesn’t eliminate it. If anyone has tried the Mind in the eye test, they will realise how much most people can read from looking at the eyes alone. So spare a moment to consider the situation I now find myself in.

I do very poorly when reading facial expressions. I can recognise a few basic facial expressions, but if I rely solely on the eyes I’m lost. The average for adults taking the Mind in the eye test is 26 out of a possible score of 36, but varies from 17 to 35. Women average slightly higher than men. For autistics, the average is 22. I’ve tried the test many times, and the best I have ever done is 17 out of the possible score of 36. Typically I hover around the score that might result from random selection – a one in four chance of getting the correct answer for any given question – 9 out of 36. In other words, I haven’t a clue how to read eyes.

It is becoming clear to me that what emotions I can read from the face depend almost entirely on the mouth and now that they are effectively hidden behind masks, I am blind to emotions being expressed unless someone describes their emotion(s) in words. I’m really not sure how I can effectively remedy the the losses I now realise I am faced with, as I don’t see the likelihood of masks being done away with for some considerable time, if at all.

I’ve spent seventy years learning how to limit social faux pas, and more importantly, how to recognise them when they occur so that I can take remedial action. I can foresee that mask wearing will set me back decades. Perhaps it’s time I seriously thought about becoming a hermit as a full time occupation.

Justice for Linden Cameron — NeuroClastic

There are many reasons why I’m grateful that police in Aotearoa New Zealand are not routinely armed and are trained in de-escalation techniques. The situation described in the linked article below is one. Linden was no danger to anyone other than possibly himself.

What I find unfathomable is how a description of a crying and yelling unarmed autistic became a “violent psych issue” involving the juvenile “having a mental episode” and “making threats to some folks with a weapon.” Is this another example of someone (or several people) in the communication chain confusing autism and a violent personality and expanding the situation to fit their narrative?

This very much looks like an example of “if all you have is a hammer, everything looks like a nail“. And it seems to be borne out by the police shooting Linden in the back as he attempted to flee in panic.

I can understand why the author advises against calling the police in a mental health crisis, and while that might be reasonable advice where police are armed, it’s not a situation we are confronted with in Aotearoa.

On September 4th, Linden Cameron was shot by police several times in Utah after a Crisis Intervention team was called, which was supposed to help him in a mental health crisis. The post Justice for Linden Cameron appeared first on NeuroClastic.

Justice for Linden Cameron — NeuroClastic

A truth about autism

Very simple fact:

So often autism is treated as a childhood disorder. It is neither a condition unique to children, nor a disorder.

There are many more autistic adults than there are autistic children. For every autistic child, there are at least three autistic adults. As the general population ages so too will the autistic population.

I make a distinction between disorder and disability. And a great many of the disabilities attributed to autism are in reality, social constructions created by non-autistics that are punitive when we are our true selves. Don’t forget that American psychiatrists didn’t remove all references to homosexuality as a disorder until 1987. In time, autism too will no longer be considered a disorder.

Disabled? I Am Legend!

I have never considered being an Aspie and having chronic migraine disabling any more than the need to wear corrective lenses. While I would love to loose the migraines, 55 years of wearing spectacles is no more an inconvenience than wearing clothes. On the other hand, my differences due to Asperger’s Syndrome are intrinsically part of who I am.

I am not disabled, but society often disables me. Unstrange Mind explains it so well:

Grab life by the wheels!

Every once in a while, a great idea comes along that has the potential to radically improve the life of those with a disability. A client of mine who has the talent of thinking outside the box has come up with a brilliant concept to improve the mobility of many who are restricted to a wheelchair. Meet Kevin Halsall – the inventor of the ogo.