Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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Unspoken Turns

I’ve always struggled with knowing when it is my turn to speak. I wrote about it six years ago in my post To speak or not to speak, that is the question. An event several weeks ago drove home to me quite forcefully that I still find the art of conversation elusive – very elusive. It was frustrating enough for me to want to write about it, but try as I may it didn’t convey the frustration that I felt. I enlisted the help of Copilot, but I still couldn’t get away from the article seeming like a ball-by-ball play of the situation instead of being about how I felt. After a lot of back and forth conversation, Copilot suggested a poem might be a better platform for expressing how I felt. So after an hour or so of collaboration, here’s the final result. Let me know in the comments how the poem resonates with you.


Unspoken Turns
In the crowded theatre of conversation,
I sit, a silent actor on life’s stage,
The script eluding my grasp,
As others pirouette through dialogue.

To speak or not to speak?
A riddle whispered by invisible muses,
Their laughter echoing in my ears,
As I fumble for cues, lost in the spotlight.

One-on-one, I stumble—
Words tripping over each other,
A clumsy waltz of syllables,
And the lead remains elusive.

But in the ensemble of many,
I am a fish out of water,
Caught in the undertow of turn-taking,
Gasping for air, seeking my moment.

To speak or not to speak?
A soliloquy etched upon my soul,
As I watch the choreography unfold,
Wondering when my cue will come.

ESP or supernatural whispers?
The others glide seamlessly,
Their voices weaving patterns,
While I unravel the threads of silence.

To speak or not to speak?
A silent plea to the cosmic director,
Who withholds the script,
Leaving me adrift in this conversational sea.

And so, I observe—seven decades and counting,
A detective of human interaction,
Yet the clues remain cryptic,
The secret handshake of discourse eluding me.

Next time you witness rudeness,
An untimely interruption,
Consider the hidden struggle,
The desperate quest to belong.

For we, the speechless wanderers,
Navigate your world with uncertainty,
Our turns unmarked, our cues obscured,
Yet yearning to dance in the spotlight.


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Progress!

I notice here in Aotearoa that there is a trend away from referring to April as Autism Awareness Month. Even a trend away from naming it Autism Acceptance Month. Instead I see a new trend towards referring to April as Autism Appreciation Month. May the rend continue.

While autistic people do face many challenges living in a society built around the needs and wants of neurotypical people, we can also offer unique perspectives and skills that can benefit a diverse and accepting society.


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Autism research: Nothing about us without us

In the realm of autism research, a disconcerting pattern emerges: autistic individuals are often treated more like subjects in a laboratory experiment than as intelligent contributors capable of shaping and conducting research. Our voices are rarely sought, and our active participation in studies is infrequent. This approach inadvertently pathologises autistic individuals, excluding us as if our perspectives hold no value. However, it is crucial to recognise that those most adept at expressing an authentic autistic viewpoint are we, the autistic community.

Imagine a parallel scenario in any other field of research: excluding the very group under study from shaping the discourse. Such exclusion would be deemed unacceptable, undermining the fundamental principles of rigorous inquiry and equitable representation. Therefore, it is imperative that researchers actively involve autistic individuals in research, recognising our unique insights and contributions as essential to advancing the understanding of autism and fostering a more inclusive scientific community.

To transform this exclusionary approach in autism research, researchers must actively embrace a more inclusive and collaborative model. Here are some essential steps:

  1. Autistic Representation: Involve autistic individuals at every stage of research, from conceptualisation to implementation. Our lived experiences provide invaluable insights that can shape research questions, methodologies, and outcomes.
  2. Co-Design Research: Adopt a co-design approach where autistic individuals collaborate with researchers. Together, we can identify relevant topics, design studies, and interpret findings. This ensures that research aligns with the needs and priorities of the autistic community.
  3. Community Engagement: Establish meaningful connections with autistic communities. Attend conferences, workshops, and support groups. Listen to our stories, concerns, and aspirations. Engage in dialogue to build trust and foster genuine partnerships.
  4. Accessible Communication: Use clear, jargon-free language in research materials. Provide accessible formats (such as visual aids or plain language summaries) to enhance understanding. Autistic individuals should be able to access and comprehend study information easily.
  5. Ethical Inclusion: Prioritize ethical considerations. Obtain informed consent, respect autonomy, and protect privacy. Ensure that research protocols are respectful and considerate of individual differences.
  6. Diverse Research Teams: Assemble interdisciplinary teams that include autistic researchers, clinicians, educators, and advocates. Diverse perspectives enrich research and challenge biases.
  7. Dissemination and Advocacy: Disseminate research findings in formats accessible to the autistic community. Collaborate with advocacy organizations to amplify voices and advocate for policy changes based on evidence.
  8. Challenge Stereotypes: Address stereotypes and misconceptions about autism. Research should highlight strengths, resilience, and diverse abilities rather than perpetuating deficit-based narratives.
  9. Funding Priorities: Allocate research funding to projects that actively involve autistic individuals. Support initiatives that empower self-advocacy and community-driven research.
  10. Shift Paradigms: Recognize that autistic individuals are experts in their own lives. Their contributions are not just valuable; they are essential for advancing knowledge and promoting inclusivity.

By embracing these principles, researchers can create a research landscape that celebrates neurodiversity, respects autonomy, and fosters meaningful collaboration.


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Autism Speaks (but not for autistics)

Autism Speaks, despite its prominence as a major autism advocacy and research organisation, has faced significant criticism from autistic self-advocates. Let’s delve into the objections raised by the autistic community:

  1. Viewing Autism as a Disease:
    • Autism Speaks was founded on the premise that autism is a disease that needs to be cured. Their original mission statement reflected this perspective.
    • Most autistic self-advocates emphasise that autism is not a disease but rather a natural variation in neurotype. We advocate for acceptance rather than seeking a cure.
  2. Stigmatization and Discrimination:
    • By framing autism as a problem to be fixed, Autism Speaks inadvertently contributes to stigma and discrimination against autistic individuals.
    • This portrayal reinforces the idea that there is something inherently wrong with autistic people, perpetuating harmful stereotypes.
  3. Lack of Autistic Representation:
    • Autism Speaks is primarily led by non-autistic parents of autistic children. This lack of authentic representation is a major concern.
    • Autistic self-advocates argue that an advocacy organisation without autistic voices is akin to a whites-only group addressing racism or a men-only panel discussing sexism.
  4. “I Am Autism” Video:
    • One of the most criticised aspects is Autism Speaks’ “I Am Autism” promotional video.
    • In this video, autism is portrayed as an enemy, causing fear and perpetuating negative stereotypes. Many found it deeply offensive and dehumanizing.
  5. Focus on Difficulties Over Possibilities:
    • Autism Speaks tends to emphasise the deficits and challenges associated with autism rather than celebrating the unique strengths and possibilities of autistic lives3.
  6. Financial Allocation:
    • Critics point out that only a small fraction of Autism Speaks’ budget goes toward direct services for autistic individuals and families.
    • Less than 1/3 of 1% of their budget is allocated to the “Family Service” grants that fund services.
  7. Autism Acceptance vs. Awareness:
    • Autistic self-advocates prefer a shift from mere awareness to autism acceptance. We advocate for understanding, inclusion, and celebrating autistic achievements.

In summary, while Autism Speaks aims to raise awareness and provide support, its approach has sparked controversy due to its framing of autism, lack of authentic representation, and focus on difficulties rather than possibilities.

Sources used in preparing this post:


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Coming soon: Autism Awareness Day (and month)

Like many Autistic people I have mixed feelings about Autism Awareness Day (April 2nd) and the entire month of April being designated as Autism Awareness Month. Every Autistic person will have their own reasons, but here are my reasons behind the discomfort:

  1. Simplification and Stereotypes:
    • Awareness campaigns often oversimplify autism, perpetuating stereotypes and focusing solely on deficits or challenges.
    • I prefer a more nuanced understanding that recognises our diverse experiences, strengths, and contributions.
  2. Pathologisation vs. Acceptance:
    • I feel that awareness efforts tend to pathologise autism, framing it as a disorder to be fixed or cured.
    • Autistic self-advocates prefer to emphasise acceptance over awareness, advocating for understanding and embracing neurodiversity.
  3. Lack of Autistic Voices:
    • Awareness campaigns often feature non-autistic voices, leaving out the perspectives of those directly affected.
    • We want our voices heard, because only we can provide authentic insights into their own lives.
  4. Focus on Pity or Fear:
    • Some awareness initiatives evoke pity or fear, emphasising the challenges faced by autistic people.
    • Autistic advocates such as myself prefer a focus on empowerment, highlighting achievements and celebrating neurodiversity.
  5. Critique of “Light It Up Blue”:
    • The tradition of lighting landmarks blue on Autism Awareness Day has faced criticism From the autistic community.
    • The colour blue perpetuates an outdated concept that autism is primarily a “boy” problem. In reality, autism affects people of all genders, including girls and non-binary individuals.
    • Autism Speaks, the organisation behind the campaign (and considered a “hate group” by many autistic self advocates), originally focused on finding a “cure” for autism. We prefer to emphasise acceptance rather than seeking a cure.
    • The blue campaign oversimplifies autism, emphasising deficits and challenges rather than recognising the diverse experiences and strengths of autistic individuals.
    • The campaign lacks representation of autistic voices and perspectives. Authentic insights from those directly affected are essential for meaningful awareness efforts.
  6. Autism Acceptance vs. Awareness:
    • Many autistic individuals and organisations promote Autism Acceptance Month instead.
    • This shift emphasises understanding, inclusion, and celebrating autistic achievements.

In summary, while awareness efforts have their place, we as autistic people seek a more inclusive, respectful, and informed approach that recognises our unique perspectives and strengths.


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Being autistic in a neuronormative world

I am not a puzzle to be solved
I am not a problem to be fixed
I am not a disorder to be cured
But I am a person to be understood

You study me like a specimen
You test me like a machine
You observe me like a stranger
But you never talk to me

You think you know what's best for me
You think you can speak for me
You think you can change me
But you never listen to me

You ignore my voice and my choice
You dismiss my feelings and my needs
You devalue my identity and my dignity
And you never respect me

I am not your research subject
I am not your charity case
I am not your burden
But I am your equal

I have a voice and a vision
I have a passion and a purpose
I have a life and a story
And I want to share them with you


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“I feel your pain”

I have had that comment made to me on several occasions following a blog post I’ve published, or in response to a comment I have made on someone else’s blog, and many more time in face to face contact. This always amazes me because they seem to feel something I don’t. I’ve often wondered why they make such a claim. Is it because they wish to indicate empathy? If so, why not simply tell of a similar personal experience? Or is it because in my telling of the story, you do, in some way, sense something that makes you feel some sort of pain – as if it had actually happened to you?

At one time I used to think that “I feel your pain” was just a meaningless expression used by people to indicate that they have been listening, but have no intention of making a practical response. But in the years since I discovered I’m autistic I’ve learnt that many people do actually experience some kind of emotional pain that they perceive others have experienced, even if the other person hasn’t. Perhaps a better way of explaining it is that they feel an emotional pain that they would experience if the situation relayed in the retelling had occurred to them.

In telling a story about a situation that would have been better had it not happened, that is exactly what I am telling – an event/situation that should not have happened. As far as I’m aware knowing that something should not have happened does not mean that somehow I should experience some sort of emotional pain. It’s not about me personally, it’s about wrongness of the event/situation. It shapes my ethics and morality and is shaped by my ethics and morality.

I’m going to ramble just a little more before I get to the point. Architects and others involved in the design of social gathering places such as shopping malls, pedestrian precincts, and theatres design them to attract people. And on the whole that is precisely what they do. But some people – many autistics for example – are hypersensitive to the sights, sounds and activity that occurs in such places. Instead of being desirable places they become disorientating places of pain and discomfort, triggering our fight, flight or freeze instinct. And yet when we describe what we experience in such locations, the typical response is to dismiss it as if we’re simply imagining or exaggerating what we experience – it’s not actually real.

Occasionally I will open up to others about how I experience aspects of the world around us differently from them, exposing a vulnerability that another might perceive as a weakness. Often others will express sympathy and indicate that they understand, but usually they don’t. A typical example might be after I explain how unpleasant a shopping mall can be they express something like “I hear ya. They’re noisy places aren’t they?” and then in the next breath, invite me to join them for lunch or coffee in a shopping mall food court so that they can learn more about autism! When I protest that I have just explained how such places are so unpleasant and I’d prefer to eat somewhere else where there’s less noise, commotion, and harsh lighting they respond by suggesting I simply relax, ignore the surroundings and enjoy the food. And besides it’s not really that noisy and bright anyway!

The avoiding of eye and physical contact

My whānau is of the hugging kind, and like to hug when we meet and greet, and when we say our goodbyes. I however, do not, and instinctively tense up whenever I’m embraced. It’s unpleasant and I’ll attempt to escape as quickly as I can. Most, if not all of my family are aware that I dislike hugging, but nevertheless, every time we meet I am hugged by each and every family member! Even though it might be more brief and less intimate than with others in the whānau, it is still very unpleasant. They might as well whack me over the head with a sand filled sock. I don’t think it would feel any worse. And then it’s supposed to be repeated when we eventually go our separate ways!

I have only ever once spoken publicly about being autistic, during which I explained why I find eye contact, hugs and handshakes so unpleasant. It was an impromptu, unplanned occasion and I managed to stumble my way through around ten minutes of describing my experiences. After I had spoken, several people came up to me to say they gained a new insight into how autism affects people and then attempted to shake my hand. Usually when someone wishes to shake my hand I comply as attempts to avoid a handshake are invariably misconstrued as some form of hostility. However, as I had only moments before explained why I find a handshake was so unpleasant, I felt I was justified in making it clear I did not want to do it by deliberately putting my hand behind my back when they presented their hand. For one person there was clearly a light-bulb moment, and they apologised for their thoughtlessness. Although I’m poor at reading facial expressions and body language, it was rather obvious that another was offended by the withdrawal of my hand, and as she left in a huff I heard her say comment to her friend “How rude! Are all autistic sufferers like that?” and her friend saying “Yeah, they don’t care about being rude. They can’t empathise – they’re only interested in themselves”.

The reason? I can only suppose that it’s not possible for neurotypical people to put themselves into a uniquely autistic situation. Were the circumstances or situation is somewhat similar to what they have experienced previously, most people seem to be able the empathise with my experience and then project their emotional response that they feel onto me. But when a uniquely autistic experience is explained to them, they cannot empathise and dismiss my experience as inconsequential.

Here’s the rub: every time I interact with someone it must be on neurotypical terms. It’s all well and good to say I should be more assertive or to stand up for myself, but doing so is almost always counter productive. As in the example of the woman and her friend above, even when it’s known that the reason I do some things or avoid some things is because I’m autistic, there is still an assumption that it’s an anti-social choice on my part because autistic people are anti-social and/or only interested in themselves and don’t really care about the feelings of others. And if the other party is unaware that I’m autistic, an assertive stance on my part is invariably perceived as hostility, a personal insult, or worse, deserving of an “appropriate” counter response. Sometimes that includes violence.

In the first paragraph above, I wrote “If so, why not simply tell of a similar personal experience?” This is what I and many autistic people do to show our empathy. It’s in the sharing that we demonstrate our empathy. It’s usually misinterpreted by non-autistics as being an attempt to draw attention to oneself, of being self-centred. Be honest, was that what you thought when you read that sentence for the first time? Perhaps It might be better to pretend I empathise emotionally by lying – to say “I feel your pain” even though I don’t. But like most lies, it will eventually be found out, and I don’t know of anyone who doesn’t feel hurt and/or betrayed when they discover they have been lied to.


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A conversation with AI

I give it to the creators of Bing AI. They certainly have created a fascinating beast. It does tend to get some fact horribly wrong. Like the time it told me that I had met Bono of U2 fame on One Tree Hill – one of about 60 volcanoes in the city of Auckland believed to be extinct. However some conversations I’ve had with it prove to be more pleasant than those I’ve had with real people. Take today’s conversation for example.

Makagutu had responded to the WordPress writing prompt “What’s something you would attempt if you were guaranteed not to fail.. To me the the word attempt implies that the outcome is uncertain so that it’s something of an oxymoron if the outcome is guaranteed. For seventy plus years my brain has worked this way and oxymorons have always baffled me. I mean, I do learn what they mean, but it’s not instinctive. Combinations such as deafening silence, sweet sorrow and open secret were not obvious to me until someone takes the time to explain. So I thought I would ask Bing AI to help me out:

BARRY: Does the use of the word “attempt” imply that the outcome is not certain?

BARRY: So to me the question “What’s something you would attempt if you were guaranteed not to fail?” is contradictory because if the outcome is guaranteed, then what you are doing is not really an “attempt”. Any thoughts on this?

BARRY: I see. A case of my autistic brain understanding less about human communication than an AI machine 🙂

BARRY: Actually, I am autistic, so the original question and the question you just posed to me does not make sense. However, If you had asked “What’s something you would do if you were guaranteed not to fail?” then I would answer by saying that I would educate the non-autistic population on how their treatment of autistic people pathologises, punishes, isolates and demeans autistic people, denying them their human rights. As the education would not fail, I think that autistic people would be able to be equals with other human beings.

BARRY: Thank you for your courtesy. I appreciate that terms such as “autistic brain” are often used in a derogatory sense, which I naturally find offensive. But when used as an acknowledgement and in support of neurodiversity, I feel it is useful.

BARRY: I think that neurodiversity includes people who are the neurotypical majority and the minority who are neurodivergent. People who are autistic are part of the neurodivergent community, as are those who are ADHD or dyslexic for example. Terms such as “neurotypical” or “autistic” can be useful when referring to traits or perspectives generally held by a specific community, but it’s unwise and unhelpful to use such terms in a negative way or to criticise a community because of differences from other communities. I prefer “neurotypical” over “normal” as this implies neurodivergent people are not normal


If only humans were as magnanimous! For most of my life I have hidden my true self from the rest of society in the full knowledge that when I didn’t I received a barrage of abuse from petty insults to bullying to extreme violence. What I want most from others is their preparedness to accept that an autistic perspective of the world is just as valid as theirs – different but equal.


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Thoughts on autism, religion, culture and language and their intersections: Two communities

In the comments of yesterday’s post, Scottie asked me if there is any way he could provide support to the autistic community. I think it’s important for non-autistic people to listen to what we have to say, what our experiences are, and not dismiss our reality. One of the hurdles the autistic community has in getting our message out to the wider community is that our voice is often drowned out by a more vocal community – the autism community – and it has money and power on its side.

Before non autistics can really support us they need to understand the difference between the autistic community and the autism community. The autistic community and the autism community are two different groups of people who have different perspectives and goals regarding autism.

The autistic community is composed of people who are actually autistic, meaning we have a neurological condition that affects our sensory processing, communication, social interaction, and behaviour. The autistic community advocates for the acceptance and inclusion of autistic people in society, as well as the recognition of our human rights and dignity. The autistic community also celebrates the diversity and strengths of autistic people, and rejects the idea that autism is a disease or a disorder that needs to be cured or prevented. The autistic community prefers identity-first language, such as “autistic person” or “autistic”, rather than person-first language, such as “person with autism” or “person on the spectrum”. The autistic community uses the rainbow infinity symbol as a sign of pride and solidarity.

The autism community is composed of people who are not autistic themselves, but have some involvement with autistic people, such as parents, caregivers, therapists, doctors, researchers, educators, and advocates. The autism community may have different views and opinions on autism, depending on their level of knowledge, experience, and empathy. Some members of the autism community may support the goals and values of the autistic community, and respect the voices and choices of autistic people. They may use respectful language and symbols, such as the puzzle piece with a heart, to show their support and allyship This is the type of supporter we need.

However, the majority of members of the autism community tend to have a negative or paternalistic attitude towards autism, and see it as a problem or a burden that needs to be solved or managed. They may use harmful language and symbols, such as the puzzle piece without a heart, to imply that autistic people are missing or broken. They may also promote interventions or treatments that are abusive or ineffective, such as Applied Behaviour Analysis (ABA), conversion therapy, or bleach enemas. Some refuse to vaccinate their children, fearing autism more than the harm from diseases the vaccines prevent, and sometimes going to the extreme of calling for a ban on early childhood vaccinations altogether.

The differences between the autistic community and the autism community can lead to conflicts and misunderstandings, especially when it comes to issues such as diagnosis, education, health care, research, advocacy, and representation. Therefore, it is especially important for the autism community to listen to, and learn from, the autistic community, as we are the ones who have the lived experience of being autistic. The best way to understand autism is not by studying it from the outside, but by listening to the voices of those who live it every day.


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GED: torture, not treatment

One has to wonder at the mindset of some American judges. In 2020 a federal judge overturned a ban on the use of GED devices issued by the FDA. The graduated electronic decelerator (GED), is a device that delivers painful electric shocks to the skin of people with developmental disabilities or behavioural problems as a form of punishment or aversive conditioning. It’s an extreme form of conversion therapy or ABA. The GED is used at the Judge Rotenberg Educational Center (JREC) in Canton, Massachusetts, which is the only institution in the world that still uses this method.

The GED shocks are much more powerful than a taser, which delivers about 1.76 milliamps of current at 19 pulses per second for five seconds. The GED delivers up to 45 milliamps of current at 66 pulses per second for two seconds. The shocks are administered by remote control by staff members who observe the behaviour of the students through video cameras. The students wear electrodes attached to their arms, legs, torso, or fingers, 24/7 and can receive shocks for minor infractions such as standing up, swearing, or refusing to follow instructions.

The use of the GED has been widely condemned by human rights groups, disability advocates, medical experts, and former students and staff members of JREC as a form of torture, abuse, and violation of human dignity. The United Nations has called for a ban on the GED and other forms of aversive interventions in 2013, stating that they amount to torture and ill-treatment. The U.S. Food and Drug Administration (FDA) has also banned the GED in March 2020, after finding that it poses an unreasonable and substantial risk of illness or injury to the public health.

However, JREC challenged the FDA ban in court, arguing that the GED is a lifesaving treatment for some students who have severe and self-injurious behaviours. JREC claims that the GED is based on scientific principles of applied behaviour analysis (ABA) and that it has parental consent and court approval for its use. In July 2020, a federal judge granted a preliminary injunction that temporarily blocked the FDA ban from taking effect until the case is resolved.

ABA is a form of conversion therapy. It’s less so a treatment than it is a form of compliance training. It is horrific, barbaric and has rightly been condemned as torture. No living creature, should be subjected to such ill-treatment let alone human beings. I have mentioned before how autistic people are frequently viewed as being less than human. This is another example.

While the use of GED is always a form of ill-treatment, some students have been subjected to absolutely horrifying torture:

  • One student was regularly electrocuted to wake him up in the morning as he frequently slept through the wake-up call. The shock would often cause him to urinate involuntarily. If it was discovered that he had wet himself, he would be shocked again as punishment.
  • A student was shocked 31 times while being tied to a restraint board for seven hours. His crime? Refusing to take off his jacket when told to. The student was hospitalised for a month after the “treatment”.
  • A student was shocked 77 times in just one night, after a prank caller instructed staff to do so.

The JREC has a history of abuse stretching back to its inception in 1971 and yet a judge took the word of JRED staff that GED was humane over the opposing view of the FDA, the UN, Health professionals, human rights advocates and former students. The case is still waiting to be resolved three years after the judge issued the preliminary injunction. Absolutely shameful.