R is for Research

R is for Research

In a series of post about autism and surrounding issues, it would be virtually impossible to not have a post focused on research. To some research is their livelihood, and to others, it can be virtually a swear or cuss word. Research can be used as to harm and to help. It can inform future practices, it can and does provide technicians, clinicians, doctors and the like with an evidence base for what they do.

Research it is that has dispelled the hateful and hurtful myth of vaccines causing autism.

Research it is that has fuelled the cure culture of organisations like Autism $peaks.

It is a double edged sword as it were.

Across the paged of autism history, research has been predominantly been done to or on autistic people. Focus has been largely on what the cause of autism is and how to cure it. It has been the domain of non-autistic researchers as the prominent actors in this quest for knowledge and understanding.

Massive amounts of money have been spent on this endeavour, yet it has neglected to include as co-actors in this quest the very people that can provide the greatest insight: Autistic Individuals.

Research has also predominantly been acted upon autistic children. The idea of research into autism across the lifespan has seemed to be not even considered for the most part.

As an autistic I have participated and been asked to participate as a subject in research on a number of occasions. I have consented on occasion, and generally been disappointed. The reality has been that my input and knowledge has not really been wanted outside of the strict boundaries of surveys and questionnaires. Additionally, it has been quite the task to actually get information back from the researchers of what they have found.

Needless to say, for many autistics, research into autism can give them a bad feeling. A feeling akin to ‘here we go again’, and ‘here comes the latest cause or miracle cure’ for me being me.

It doesn’t have to be this way.

But, it really doesn’t have to be this way. There is, in fact, a new model of research beginning to gain some traction. It’s a very different approach to autism research. It is, dare I say it, revolutionary.

It’s called co-production. It is being championed in my country of Australia by AutismCRC. The idea is that research is conducted collaboratively by

allistic and autistic people together. That the research is not just done on autistics but done by autistics. Those autistics are involved in every step of the process as key team members of the research team.

Not only this but this group are so serious about this that they are putting action behind the words. It is not just rhetoric. It is, in fact, a passionate stance by the key people involved in the organisation. AutismCRC is committed to research that enhances the lives of autistic people across the lifecycle.

Yes, research into more than just kids, and more than just a cure, a treatment, a cause. Believe it or not!

So committed to this way forward are AutismCRC that last October I an 13 other autistics gathered together for a week in Brisbane, Australia for a Research Academy. We gathered to learn some of the ins and outs of research, the models, the methodologies the ethics. We laughed, we cried, we learned and we connected. Most importantly we discovered that we were not merely participants or subjects but colleagues.

So committed to this way forward are AutismCRC that when the funding committee considered funding research projects that proposals that are for co-produced research will be looked upon preferentially to those that don’t.

During our week together we were privileged to be present for the official welcoming of ASAN as a key partner with AutismCRC. If ASAN is onboard as a key autistic advocacy group then clearly this is not to be simply dismissed.

With all this being said, there is one very special key ingredient that AutismCRC and other groups that pursue co-produced research have in common. It is a simple ingredient that has been missing and the worlds knowledge, understanding and insight into autism and autistic people is the poorer for it. That ingredient is the valuing of autistic voices and their lived experience.

R is for Research.

I confess I have had negative reactions to research and autism. I have even made a meme or two about it in the past, but, I throw my support behind the co-produced research, it will have a key role to play in the enhancement of autistic quality of life, access to needed support and services and as a consequence better quality of life across the life-span.

I am sure there are similar organisations in other parts of the world, I can only really speak of this one. Yes, I am speaking in support of them, because I experienced their passion and dedication to the valuing of autistic voices and the valuing of that lived experience and insight about autism and being autistic that only an autistic can provide.

Things are moving forward and co-produced research will be what provides real insight and real change and real support to autistics because it will inform practice to enhance autistic lives.

It’s not just talking and bluff, with key partners such as ASAN and Dr. Wenn Lawson with AutismCRC the proof is in the pudding.

R is for Research…

It’s changing folks and for the better.

Q is for Quack.

Q is for Quack!

The duck goes quack!

As I begin this post I have in my mind’s eye an image of Donald Duck making his unintelligible quacking as he attempts to communicate to others. Quack Quack Quack Quack…..

The duck goes quack….

The quack sprouts unintelligible nonsense….

But of course, we are not talking about actual ducks, be they mallard ducks or any other ducks.

Q is for quack because the quacks go quack a doodle woo.

When it comes to autism there is a very large amount of quackery presented. The woo is strong around autism. The miracle cures, the latest wonder treatment to release us from our locked up existence, or to find us a way back from our personal lostness are everywhere.

This is never a good thing. It is never a good thing for unproven and often dangerous treatments to be levied upon anyone, not least people who are not sick or diseased to begin with.

Let’s get it straight, once and for all, autism does not need to be cured.

Q is for quack and the quacks abound…

The causes and cures make quite a list, we have rope worms, vaccines, leaky guts, gluten, casein, and more. We may as well come out and say it was all because of Donald J Trump. Actually, perhaps that would actually be a little more believable than the much of the other rubbish.

If it wasn’t so serious there would be a humourous side to it all but.

Q is for quack and there is absolutely nothing at all funny about some of the treatments perpetrated on autistics.

There is nothing funny about a child or vulnerable adult having bleach solution fed to them and administered via their rear passage.

There is nothing funny about children being subjected to risky chelation therapy to remove imaginary heavy metals.

There is nothing funny about human beings being injected with bovine hormones to cure them of non-disease.

There is nothing funny about a human being being subjected to faecal transplants.

No, it’s not funny at all.

And there’s just a smattering of the quack treatments that abound.

Q is for quack.

The quacks are out there. They are master manipulators of vulnerable parents who have been conned into believing lies by slick speech clever marketing and sciencey-sounding rubbish that is at best cherry picking of information and at worst outright lies.

The quacks are out there and they are out there for a single purpose. As much as they say they care about kids, or they want to help the suffering, they are after one thing, and that is every last cent they can con out of you.

Yes, Q is for Quack.

These people are not helpers, they are nasty, horrible, self-centred predators. They are leaches on society happy to see their fellow humans suffer in order to line their own pockets.

They are nothing but the modern day equivalent of the travelling snake-oil salesmen.

Anyone that tells you they can help you with a cure for autism is a quack. Because there is no cure. There never will be a cure and there never needs to be a cure.

They come in many guises these quacks.

They can look like doctors.

They can look like ordinary mom or dads.

They can look like professional therapists

They can look like chiropractors.

They can look like hippies.

It doesn’t matter what they look like because they are nothing more than quacks seeking to rip you off.

Whether it’s a load of new age rubbish tapping on your head or a full blown medical treatment where you have bovine products injected into a muscle, it is all just quackery.

Let’s be clear. No Cure Required for autism.

There are issues that need to be addressed for autistic people, often, in fact, we autistics have comorbid conditions that do need to be treated, like epilepsy for example.

Be assured I would never advocate the non-treatment of these issues.

But as for being autistic. I don’t need a cure. I am not diseased, sick or disordered and neither is any other autistic person.

Quack goes the duck.

Q is for Quack…

P is for Pervasive

P is for Pervasive….

Pervasive, a word that often has negative connotations. It’s not really a negative word, more that it is used to describe things that are considered to be negative. A pervasive negativity, a pervasive injury etc. Pervasive though really just means through the entirety of a thing.

existing in or spreading through every part of something
Meriam-Webster.

Autism is considered to be a pervasive condition. In the previous edition of the DSM, the DSMIV within the autism category was listed a condition with the obscure title of PDD-NOS — Pervasive Developmental Not Otherwise Specified. That title in itself is a successful exercise in obfuscation if you ask me. PDD-NOS has kind of been understood to be a kind of autism lite.

Generally, people that didn’t quite have the required number of diagnostic criteria would be given this as a diagnosis when it was believed by the clinician that they were in fact autistic but in terms of diagnostics were not quite there, not because they didn’t have the autistic traits, but just because the clusters of traits didn’t quite check the right number of boxes in the right categories within the criteria.

Of course, it is kind of ironic to consider something that is pervasive as autism lite. By its very nature, a pervasive condition spreads through every part of a thing. If autism is a pervasive condition then what does that actually mean? What does it mean if a condition spreads or exists in eery part of something?

It is, in fact, the pervasiveness of autism that contributes strongly to my insistence on the use of autistic and not with autism, or has autism, and to a lesser extent on the spectrum. If I have something or am with something then it is not really pervasive.

P is for Pervasive….

Pervasive means in terms of being autistic that everything I do, everything I feel, everything I think is in some way influenced by autism. Those things always come from an autistic mindset, an autistic experience, an autistic sensory experience, an autistic cognitive experience.

In effect, nothing is done outside of the experience and reality of being an autistic individual.

When I think about a social experience I think about that as an autistic person.

When I think about an intellectual pursuit I think about that as an autistic person.

When I have a sensory experience it is an autistic sensory experience.

When I have emotional responses they emanate from an autistic reality.

The reality is there is no pre-autistic or post-autistic reality.

Autism as a pervasive condition is doubly pervasive. It is not just pervasive in that it influences and is a part of all aspects of life but it is also pervasive in that it is lifelong.

I was autistic at birth.

I am autistic now.

I will be autistic at death.

P is for Pervasive….

It’s not possible to turn autism off. It’s not possible to put it down, to just stop being so autistic for a moment. It is a pervasive and integral aspect of who I am.

Depression and anxiety can also be pervasive, and without in any way trying to minimise them they are not pervasive in the same way as being autistic is. Depression is not integral to who a person is, anxiety too is not integral to who that person is. Yes when someone is suffering from these conditions it is pervasive, I speak from experience on that front, but they can be treated and in fact cured, because they are not a condition that is pervasive in the sense that they are inbuilt into who one is, how they experience the world, how they interact with the world, and how their very neurology is wired.

P is for Pervasive…

I have oft heard parents proclaim that autism doesn’t define my child. I beg to differ. Autism does define your child because it is a pervasive element of who they are. Of course, this does not mean that autism is everything they are, of course, autism is not the sum total of everything about them.

Just as being a parent isn’t the sum total of everything about me.

Just as being left handed is not the sum total of everything about me either.

Just as being a transgender woman is not the sum total of everything about me either.

But, it does define me.

I am autistic, just as I am a parent, a left-handed transgender lesbian woman.

P is for Pervasive.

O is for Obsession

Obsession is a common subject in circles around autism, ideas like obsessional behaviour, obsessional interests, being obsessed with things. It’s linked with a particular psychiatric condition known as Obsessive Compulsive Disorder, OCD.

OCD is one of the conditions that sit amongst those conditions which, place a person amongst the neurodivergent.

However OCD is a particular condition, and not every neurodivergent or autistic person has this condition. Indeed, there are allistic people that would indeed have this condition, in fact, I am privileged to call some allistic OCD people good friends.

The point here I think is that it is a misconception that all autistic people are obsessional, or, that they even have obsessions. Plenty of people have obsessions about things, or become obsessed with things, however, more likely is it that people have a special or prolonged interest in things, or, for want of a better word, have hobbies.

It’s no question that there is a stereotype of autistic people and in particular, autistics who identify as aspies, that they have obsessions, that they are unable to hold an interest in anything that is not their obsession. Like all stereotypes, this is simply not the actual reality.

Obsession is unfortunately loaded with negativity. To say someone is obsessed is generally percieved as a negative thing, whereas to say someone has a hobby or a strong interest does not have that negativity loaded into it, yet it seems that in general the broader community is happy to place this word as a matter of course on the things that autistic people are interested in or does, whilst at the same time choosing not to do so in regard to allistic people.

Of course, this is not universal in any way, it is a tendency, though. Many is the time when I have heard someone say to a parent when they explain they have an autistic child, ‘oh and what is their obsession’, this is not necessarily intended with a negative or judgmental motivation, however, when introduced to an allistic child, one doesn’t ask oh what is their obsession?

Far more likely is that the child would be asked what they are interested in if they have any hobbies. I am left wondering why this is so. I find it quite disheartening indeed. I think that it is just another facet of the public discourse around autism, that it is an inherently bad and negative thing. To be autistic is by default to be less, in the eyes of the public discourse and the general narrative, and so, it is without much thought, negative laden connotations are placed then on autistic people.

Of course, it goes without saying that there are autistic people and non-autistic people that do have obsessions and obsessional interests. This does not mean then that all autistic people are obsessional. It is as silly as saying that because some cats are black, all black cats eat grass, so all cats eat grass. The logic is clearly flawed.

As an autistic person, I have at times joked about being obsessed with things, but the reality is that I am not obsessional, I do have strong interests in things and they can be a fairly singular focus for extended periods of time. What they are not though is all encompassing to the point that they take control to such an extent that they can’t be pulled back from.

I suspect, that as many autistics have a strong ability to focus on things that this is easily mistaken for obsession. This, coupled with a difficulty adapting to unexpected change can add to this mistake. I think what is going on here is that as our focus is broken by an unexpected change, anxiety about that kicks in and a response can seem that we are in fact driven and controlled by the thing we were strongly focused on. I think this is true at least for myself.

The ability of particluar individuals to hyperfocus has brought society many advancements and discoveries. There will be debate about whether historical figures such as Einstein was autistic or not, however the fact remains that his ability to hyperfocus his thinking has contributed massively to the scientific community.

O is for Obsession and autistics are not obssessional.

O is for Obsession and hyperfocus is not obssession.

O is for Obsession ….

It’s time we stopped calling focus and interst obssession for one group and hobby for another…

N is for ….

The letter N has a few clear candidates for an alphabet series. It could have been N for Neurotypical, N for Normal, N for Neurodiverse, N for Neurodivergent. But, it’s none of these candidates for this blog. They are all good topics well worthy of attention, indeed, I have given them attention in the past in other blog posts. But today, in the spirit of autism acceptance and the promotion of the neurodiversity paradigm we have:

N is for Nothing About Us Without Us.

Parents make decisions on behalf of their children all the time. It’s a part of life. We even have governments making decisions on our behalf. They decide shall we go to war against this evil despot, for example, they decide how much taxation we should pay, how much certain services cost, what rebates might apply on things. The list goes on.

Primarily though when I think of making decisions on behalf of others, it is most often in the domain of parenting and children. And that makes sense, it is, of course, the role of all parents to make decisions in the best interest of their children, to promote growth, ensure safety and provide for their needs. There is no issue with this it is part of the human experience.

So then what is this whole nothing about us without us? As I have explained we do this as a matter, of course, don’t we. Well yes, we do. When, though, do people get to be self-determining. When, though, does a human person get to move into that realm of saying no, that’s not what I want from me, I reject that process and affirm this process.

In the eyes of the law in my country, that occurs when a person 18. At 18, I am considered an adult, given the right and privilege to vote in elections, the right to buy and consume alcohol and other such things.

But what if one is disabled?

In theory, the same rights apply, unfortunately, in practice it doesn’t. Parents still continue to decide for these disabled adults, departments of government, advocacy groups, everywhere are the rights of self-determination actively taken from disabled adults.

It’s not just the active removal of these rights of self-determination either, it’s far more insidious than that. It’s the propensity of the professional classes to make comment and policy moves without considering the voices of the disabled people they supposedly represent. It’s the reporting by the media about disabled issues without comment from disabled people. It’s the actions of so-called advocacy groups spending raised charity funds on programs and processes without consultation with the people they claim to assist.

It goes on and on.

Major autism organisations support a light it up blue campaign, to raise awareness for autism, yet what does this actually do to promote the well-being of actually autistic people? Autism walks are popular around the world, they raise money for autism organisations to apparently make our lives better.

Yet this is all done for us. And, it is all done without us.

Not only this but then in many cases these funds are then directed at the whim of a board or management committee. Autistic people are not consulted or in most cases even asked, how those funds would best benefit them. In many cases, these funds are funnelled into research that is not directed at better lives for autistic people but at finding the cause of autism, and the holy grail- a cure for autism.

Yet, autistic people around the world proclaim, I DON’T NEED OR WANT A CURE, and I DON’T CARE ABOUT THE CAUSE.

And anyway if you really want to know the cause, that’s easy, a sperm and an egg got together and created that human person who happens to be autistic. End of story. It doesn’t matter.

N is for nothing about us without us.

Please stop deciding for us.

Please start listening to us.

Please stop ignoring us.

Please stop silencing us.

N is for nothing about us without us.

Please start listening to us.

Please start valuing us.

Please start regarding our thoughts and feelings.

Please start amplifying our voices.

N is for nothing about us without us.

Just as an allistic person is upset at their voice, their decisions, their thoughts and their feelings being ignored, so too, are autistic people.

N is for nothing about us without us.

Because quite simply, we are human persons, just like you.

My Inability To Make Eye Contact Does Not Need To Be ‘Fixed’


Concentration, empathy, and attention have long been linked to a pair of eyes meeting directly. It’s often intimated that if someone isn’t looking you in the eye when they speak to you, they should be treated with suspicion, or at the very least the content of what they said should be treated as such. “Look me in the eye and tell me that” is a term used almost interchangeably with “tell me the truth.”

But what if it’s difficult for a person to maintain eye contact? Should that person be judged as insincere, untrustworthy, or socially flawed?

For those with autism who struggle to hold someone’s gaze, these assumptions are often made. And, as someone who’s suffered as a result of these assumptions, I want people to understand why they’re so damaging.

***

Difficulty in maintaining eye contact is such a known part of the autistic experience that John Elder Robinson titled his autobiography about life with Asperger’s Look Me in the Eye. The Indiana Resource Center for Autism describes the many ways this difficulty can manifest:

“Some people who have autism actively avoid eye contact and appear confused and anxious when it occurs. Some seemed to make eye contact relatively early but later reported they were actually looking at something that fascinated them (such as their reflection in one’s eyeglasses). When cued ‘Look at me,’ some make eye contact that recipients experience more as a staring gaze than as a communicative exchange. Some gradually learn to make eye contact and to read simple meanings that they have come to understand through experiences with what happens to them when a particular person’s eyes have a specific look.”

While research on this is limited, there are some theories as to why eye contact is hard for some with autism. It’s been suggested that in children with autism, for instance, an inability to hold eye contact has to do with a reduced ability to govern eye movements.

Of course, none of this to say that eye contact is an issue for every autistic person; the saying if you’ve met one autistic person, then you’ve met one autistic person very much holds true in this case. But it’s clear that it’s an issue for some in the community — and equally clear that there’s a stigma attached to it.

In Look Me in the Eye, Robinson listed his inability to hold someone’s gaze as one of the reasons he was branded a “social deviant.” I regularly see posts in support groups on social media in which parents comment on their child with autism not providing the “desired” eye contact. And this stigma cuts both ways: I have also heard stories about people being unable to gain an autistic diagnosis because their eye contact was too good.

There are also many therapy programs designed to “encourage” or “improve” eye contact in autistic children, including in Applied Behavioral Analysis programs. Research and educational documents with titles like “Teaching Eye Contact to Children with Autism” and “Making Eye Contact A Reinforcer” further aim to “help.”

The suggestion is clear, and even explicit: An inability to hold eye contact is a “social deficit” that must be “fixed,” rather than a perfectly normal and acceptable aspect of the autistic experience.

I know from personal experience that such suggestions can do real harm.

***

When I was growing up, eye contact was mentioned during confrontations at home where my truth was demanded. “Can you look me in the eye and tell me that?” I was asked. But I can’t recall either of my parents ever saying outright that I should look people in the eyes more, or that it was an expected part of communicating with others. Problems didn’t really occur until my early school days, when teachers insisted that I should look the person I speak to in the eye. During these exchanges, I learned for the first time the pain and trauma that could come from meeting eyes across space.

Yes, I do mean pain, and yes, I do mean trauma.

Eye contact actually hurts me. If I meet the eyes of another and hold their gaze for more than a microsecond, I experience sharp discomfort throughout my entire body. When making eye contact, I also feel that my very soul has been laid bare — that my every inner thought is on display, and that my mind can be read and my secrets made public. The best I way can explain it is that it’s like being opened up totally from the inside out for all to see.

It’s a horrible experience, to put it bluntly.

This is, of course, my unique experience. But I am seemingly not alone in it. And I have to wonder: Instead of focusing on how to teach autistic children how to maintain eye contact, wouldn’t it be better to teach society that some people will look you in the eye when they talk to you, and some will not? And that this is perfectly okay?

A lack of eye contact isn’t a sign that a person lacks attention, empathy, or care; there are better and more effective ways of gauging these qualities in a person.

Just because I can’t hold your gaze doesn’t mean I have a problem. But it’s time to confront the fact that our culture does.

***

Lead image: Pixabay

https://gumroad.com/l/LWKv

M is for MMS…

The previous post on liberation was something of a declaration of positivity, now we have the M post, and as much as I would prefer not to have to talk about this topic, it must be talked about, it must be. It’s that important. Yes M is for MMS and it really sucks that it even exists.

MMS for those that are unaware is an acronym for Miracle Mineral Solution. A concoction of chemicals mixed together to from what is, essentially, industrial bleach. It’s touted by its true believers as a cure all for everything. It cures cancer, autism, lupus, you name it it cures it.

It’s known by some other names also. Miracle Mineral Supplement and CD- Chlorine Dioxide are among them. The solution does have a legitimate purpose in very tiny concentrations for water purification. It is not fit for human consumption and taken in the doses recommended is highly toxic and extremely dangerous.

The use of this product is the brain flip of Jim Humble the leader of the Genesis II church. A healing cult, it’s called a church but it is not religious at all. It is in fact just a lot unhinged and totally irrational. It starts from a belief that Jim himself is an alien come to earth with his miracle healing solution. If you start from that premise you are already way out there in my book.

I could go to great lengths to try to explain the chemistry and use of the MMS but that work is certainly already done. I encourage you to watch the youtube video below, an investigative report by the One show from last year:

A shorter one here:

Or a longer in depth one here:

And then there’s Kerri Rivera and her poisoning of parents against their own children, against any semblance of common sense. Kerri released a book by the name of “Healing the Symptoms known as Autism”. In Kerri’s mind autism is not actually a thing, it is a bunch of symptoms that are caused by rope worms, which, don’t even exist, infecting the body’s systems. Before I go to into Kerri you can read a little more about her here, where I have previously written about.

So M is for MMS and MMS is pure evil inflicted upon autistic children and adults at the hands of their parents. Dissolved in water or as bleach enemas inserted up the rear passage. Parents happily taking pictures of the ‘worms’ they find in their children’s faeces. But they aren’t worms they are intestinal linings.

M is for MMS and it needs to be stopped. Web shops selling it as water purification drops, YouTubers with their false testimonies of what a miracle it is.

Here’s the thing. Bleach will not and does not cure any of the diseases they claim it does, and MMS does not cure autism, because for one, it’s not a disease or illness it’s a neurological difference, and two, it’s just quackery pure and simple.

Unfortunately, it’s not like a run of the mill health kick that has no basis, or it’s not like taking some vitamin supplements, it’s fucking poison. Yes, fucking poison.

M is for MMS it must be stopped.

I follow the campaigning work of Emma Dalmayne who campaigns tirelessly to defeat it along with Fiona O’Leary and others. These advocates call for legislation to make this poison illegal. I can only agree with them as the current state of affairs is that it is extremely difficult to stamp this out due to the vaguery of the law, this appears to be the case everywhere, not just the USA or the UK, but everywhere.

The real thing of course is, that, if, autism, being autistic wasn’t pathologized as disease and disorder, if the world media weren’t so quick to portray autistics as less than normal, if bullshit about vaccines causing autism and horrible organisations like Autism $peaks, were not so intent on painting autism as a destroyer, an epidemic, and a catastrophe, then this horrible poisoning of autistic children would never have gained a stronghold.

Yes, if it wasn’t for the stigma, if it wasn’t for the narrative of less, broken and flawed, then autistics would be more accepted both by their families and in the wider community and poisons like MMS would never gain popularity and be seen as an option to easily fooled parents.

M is for MMS and it is poison.

L is for Liberation…

Liberation is a powerful word and an even more powerful reality. The experience of being liberated from something could be one of the most powerful experience one can experience in life. Liberation can happen in many different ways, both in a personal and a communal way.

One can be liberated from a critical illness, liberated from imprisonment, liberated from an abusive relationship. Being set free is, I think, I primal human experience. The value, intensity, and importance of that liberation can not be underestimated.

As I type this I have images from the film Shawshank Redemption, if you have not seen this film I recommend it highly, a banker falsely accused of murdering his wife found guilty and put in prison. There are many mini moments of liberation and freedom in this film and they speak volumes about this human experience.

The moment a group of prisoners who have worked to tar the roof of a prison building share a beer together after a hard days work. Standing, sitting, talking, like free men for just a few moments.

The moment when music invades the prison in such an incredibly powerful way providing a moment of internal freedom and liberation from the circumstances the prison population inhabits.

The finale of liberation though is the grand escape made by the banker and the reuniting of him and his best friend on a beach in South America somewhere. It is a seminal moment, low-key but incredibly powerful. For me, tears flow at this moment every time, even though I have watched this film many times.

Liberation has got a lot to do with living autistically. It has a lot to do with being autistic and claiming one’s human rights.

L is for Liberation…

Personally, I have experienced a number of moments of liberation in terms of autism, the two most pivotal, the experience of diagnosis, A Seat in a funny little waiting room in an inner northern Melbourne suburb. And the moment of actually accepting that diagnosis and in effect realising that autistic is an integral part of who I am.

I have previously described how growing up was in a sense being somewhat of an alien in exile, living in a kind of haze or fog. That emerging from that with a diagnosis was like suddenly seeing clearly like never before. All of that is true, and it is also an intense feeling of liberation.

A kiss the ground like a newly released prisoner might do as they emerge through the prison gates.

If the diagnosis was that moment of clarity, then acceptance of that was an intense moment of celebration.

Liberation from a lifelong belief that I was somehow, broken, less and wrong.

Liberation from a life of pretending to be something I am not.

Liberation from constant self-loathing for failing to be something that I am not.

Liberation from a paradigm that believed I was sick, diseased and disordered and emergence into embracing difference and diversity.

L is for Liberation…

Personal liberation for autistic people comes, I believe, with acceptance of our neurology and state of being. I also think that this is true for autistics as a community too.

As an autistic community as we throw off the shackles of being talked about, being decided for, having treatments imposed upon us we can be liberated as a community:

Liberated from the pathology paradigm and embracing of the neurodiversity paradigm.

Liberated from being a silenced and sidelined group.

Liberated from having our human rights breached as a matter of course in the name of fixing us.

Liberated from our ranks being routinely subjected to conversion therapy.

Liberated from the likes of organisations like Autism Speaks who routinely depicted us as destroyers of life.

Liberated from being looked upon with sorrow by the wider community.

Liberated from being excluded from many aspects of life like fulfilling careers.

The list could go on and on, there are so many areas where the autistic community can be liberated as a community. Presently it feels like we are in a perpetual battle-like state, countering the latest so-called miracle cure, preparing for the next wave of pseudoscience theory, swamped by barrages of the latest cause for our ‘condition’, I long for this state to end, for us to take our rightful place as just another sub-group of our community.

L is for liberation…

We too can be liberated from pathology and discrimination. It’s been done before. History tells us we can be liberated.

Look for instance at the Suffrage Movement, Feminism, LGBTIQA+ Rights.

Many said those things would never change and yet…

Homosexuality used to be described in the DSM, it used to be called a disorder.

They said Women would never vote.

They said women should only be in the home being good wives and mothers.

And yet…

Yes, liberation can occur.

L is for liberation…

K is for Kinfolk…

The first thought when I think of the word Kinfolk is what a quaint word that is, and then I think of family. Family life is a fraught business. It seems to me that our families are at times our greatest blessing and at times quite the opposite. My personal family life was a difficult one. My immediate family did not, does not and refuses to understand me or take any responsibility for how things went down over my childhood, adolescence and so on.

However, my extended family overall was a place of heartfelt, deep care and love. This is particularly so on the side of my mother’s family. My mother is one of 6 children and her mother is one of five daughters. The largely traumatic experience of my childhood was intermittently punctuated by experiences with this greater love displayed by this family. The times staying at my grandmother’s place, my great-aunt, and uncle taking me away holidaying with them in their caravan, a day at the Rugby League Grand Final with another of my great aunts.

These were moments were where the value of kin was indeed realised for me. Beacons of hope within the dark fields of trauma and bullying. And it was a dark field of trauma, home life was characterised with verbal, emotional, physical and sexual abuse. School life was an alien experience where I was the perpetual outsider due to many home moves, and with the added aspect of being an undiagnosed autistic, it was very much like an out of this world or out of this body type of experience.

Kinfolk is a powerful narrative of human life. We seem to be built for this kind of relationship. We seem to have an innate to desire this kind of connection with those humans that are around us, that we live with, that provide for us. Unfortunately as my

experience was this is not always something that happens in the ways that it is sought.

Kinfolk does not have to be limited to our immediate family. It can be just as powerful, at times more wonderful and certainly can be a more healthy reality if that connection can be found in a wider context, such as close friendships or an extended family or community group.

I wonder if my experience is more common tho autistics than would be immediately obvious. Oftentimes we autistics can be characterised falsely as lacking emotion and empathy, characterised as uninterested in personal connection. It is my experience that this is utterly false and far from the truth.

I difference in expression, a different way of connecting, an alternate way of connecting with and reciprocating in personal relationships is not a lack or absence thereof. What is perceived as a vacant expression on a face does not mean a lack of emotion, empathy and connection? It could mean one of a myriad of things, especially when the person has a variance in communication comprehension and expression. Why would someone for whom the micro expressions of the face is a foreign idea concern themselves with those expressions on their own face?

Kinfolk, I believe, is as important for autistic people as it is for allistic people. As I have connected with other adult autistic people I have discovered that more than a few have similar stories of disconnection and discord among their own kinfolk. Families it seems are either our greatest allies or our greatest alienators.

The challenge, of course, is, if your own kinfolk connections are broken, inadequate or non-existent, then, to find and connect a new kinfolk, a new tribe as it were. I found this initially in short connections with my extended family, however, the greatest kinfolk connection I found is actually in the autistic community. In this new tribe, I have found, acceptance, inclusion, care and support. In fact, apart from the relationship I have with my wife, it is in this tribe that I have been able to find my voice, establish some self-believe.

A new connection to kinfolk and tribe with the autistic community, has enabled a wider kinfolk connection for me that I have never previously experienced, in truth it has provided the encouragement to believe that I just might have something to offer the world, that no it is not just in my head that I have something to say and contribute to the world.

If your blood ties kinfolk or not your true kinfolk then you can find a new kin, a new tribe, a kinfolk that can and will support you to be the very best you can be.

K is for kinfolk, find your kin, embrace them and fly high to share the gold that is within you with all who come your way.