Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


1 Comment

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic

I am autistic, and over the 12 or so years since I discovered the truth about myself, I have come to the position where I can state that not only I am autistic but that I am proudly autistic – I am an Autist. After first coming to terms with my neurology, I have gradually become more and more aware of how autistic people are treated worldwide – Abysmally, and often horrifyingly. Treatment such as the administration of powerful electric shocks that are deemed inhumane when applied to animals, terrorists or criminals is, apparently okay when applied to autistic people, and in some places permitted by law! This includes the state of Massachusetts in the USA, where the Judge Rotenberg Center (JRC) subjects disabled and/or autistic children and adults to GED electric shock “treatment”.

Trigger Warning: description of abuse and torture. Read the terrifying experience of one JRC survivor on Aspiesforfreedom’s Blog

The Judge Rotenberg Center (JRC, founded in 1971 as the Behavior Research Institute) is an institution in Canton, Massachusetts, United States, housing people with developmental disabilitiesemotional disorders, and autistic-like behaviors. The center has been condemned for torture by the United Nations Special Rapporteur on Torture. The JRC is known for its use of the graduated electronic decelerator (GED), a device that administers electric shocks to residents through a remote control. The device was designed by Matthew Israel, the institute’s founder.[1] While the FDA issued a formal ban on the GED in 2020, the device continued to be used on some residents pending an administrative stay for the duration of the COVID-19 pandemic.[2] In July 2021, the D.C. Circuit Court of Appeals ruled that the FDA could not issue a “partial stay” but must issue a blanket ban or no ban at all, thus allowing the JRC to continue subjecting 55 people to shock in the meantime.

Judge Rotenberg Educational Center – Wikipedia

The article linked to below deserves to be read by every human rights advocate, especially in light of the attempt to stifle the voice of criticism by the very people who are affected the most – Autistic people.

For decades, the Judge Rotenberg Center (JRC) in Canton, Massachusetts, has been using graduated electronic decelerators (GEDs) to shape the behaviors of children and adults. The GED delivers a powerful and extremely painful electroshock and is worn by students 24 hours per day, every day— even during sleep and showers. The GED looks like a…

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic


Leave a comment

Are you Aprilness-aware? — transponderings

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.

Are you Aprilness-aware? — transponderings


11 Comments

Autism “awareness”

Ngā kaipānui kia ora

When I tell people about Autistic Pride they say, “how can you be proud of something that you have no control over? That doesn’t make sense? How can you be proud of being Autistic?”

Lyric Holmans, Neurodivergent Rebel

April is Autism Awareness month, and today, Saturday 2nd April is World Autism Awareness Day. It’s a time when many autistic people “go into hiding”. Why? Because autism is still portrayed as a bogeyman – something that is undesirable, that destroys families, causes misery to “sufferers”, that needs to be eliminated. No it’s not. From my perspective, autism describes a way of perceiving and experiencing the world that is different from the way the majority of the population perceives and experiences the world. It’s not so much about deficits and disabilities, it’s about an alternate way of being. The bogeyman, if there is one, is that the non-autistic world writes of the autistic world as something undesirable.

So back to the question “How can you be proud of being Autistic?” I’d answer by saying “In the same way one can be proud of being gay or black or trans or Māori or Native American or…”. It’s a way of saying “Even though society devalues me for being who I am, and puts obstacles in my path that limits my ability to develop to my potential, I deserve to be recognised as a worthy and valuable member of society, and my rights and needs are no less important than the rights and needs of anyone else”.

I object to having an Autism Awareness month for the same reason I’d object to a Gay Awareness month of a Māori Awareness month. Look at it this way: there isn’t anyone who isn’t aware of there being gay people, trans people or people of colour, but that does not prevent the likes of racists, homophobes and transphobes from spreading hate and disinformation about them. It doesn’t prevent normal, intelligent people from failing to appreciate the social barriers that are placed in the way of individuals who are members of minority groups – in other words intentional and unintentional discrimination.

Likewise, I doubt that today there is a single person who isn’t aware of autism. For goodness sake, in some quarters, there’s panic about an “autism epidemic” being accelerated by vaccines or 5G or plastics or the New World Order or GMOs or… something. In fact it’s nothing more that a growing realisation within the health sector of what autism actually is. What is sad is if they had consulted with actually autistic people instead of making lab rats of us, they would have had that “Ah ha” moment long ago.

What we need is not awareness, but acceptance at a minimum. Better yet would be valuing the alternative perspectives that autistics and other other forms of neurodiversity bring to society. Because Autistic people perceive and experience society and the world differently, we express our experiences and understandings differently. Accept that our differences are not deficits, but are a valuable and important part of the diversity that makes the human species what it is.

Embrace diversity!


Leave a comment

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.


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.


Leave a comment

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


Leave a comment

Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel

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…

Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel


3 Comments

Conversion therapy: only partially banned

Last week, the Conversion Practices Prohibition Legislation Bill passed the final stage of becoming law in Aotearoa New Zealand It’s pleasing to note that only 7 parliamentarians (all who happen to be members of the centre-right National Party) voted against the passing of this legislation.

So why was the passing of this law a disappointment to many in the autistic and neurodiverse community? The autistic community has borne the brunt of conversion therapy for decades, well before it became a “treatment” for those in the LGBTQI+ community. The practices developed in the “treatment” of autistic people are the very practices prohibited by the new law, but only when it comes to the “treatment” of sexual orientation, gender identity, or gender expression. Conversion therapy for other “conditions” remains lawful.

During the Select Committee stage of the process, over 100,000 public submissions were received and considered by the Justice Select Committee. I know many autistic, neurodiverse and other minorities made submissions asking for all forms of conversion therapy be banned. It seems we didn’t have the numbers or the persuasive powers necessary for the Select Committee to expand the ban beyond gender identity/expression and sexual orientation.

Reading a random selection of written submissions (78,416 are available on line), it’s pleasing to see that the vast majority of submitters professing a religion supported the ban. What is disappointing is that so few submitters (religious or not) considered how harmful conversion practices can be outside the confines of sexual orientation and gender identity/expression. When you consider that 80% of autistic children who are given conversion therapy in an attempt to make them “appear normal” exhibit symptoms of PTSD as adults, there is urgent need to ban all forms of conversion therapy. Now.


3 Comments

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.


6 Comments

Countdown towards a ban of all forms of conversion therapy — Autistic Collaboration

ABA is perhaps the best known “therapy” for autistic people – especially autistic children, but it’s still conversion therapy, and is just as harmful in the view of many autistic adults. What is less well known is that this form of “treatment” for autistics is the basis of all forms of conversion therapy, and now widely condemned in other fields. Unfortunately people who are autistic can still be subjected to electric shock “therapy” in order to make them appear less autistic (a recent SCOTUS decision means it still continues in America). All conversion therapy is cruel and inhumane, and I don’t care whether it’s in the “treatment” of those in the LGBTQI+ community or the neurodivergent community. It must stop!

Today we have presented our submission to the government’s Conversion Practices Prohibition Legislation Bill. From today we will will start counting the days until all forms of conversion therapies are banned in Aotearoa New Zealand. Our hope is that this page will only need to be appended a few times with further activities to remind…

Countdown towards a ban of all forms of conversion therapy — Autistic Collaboration