Not a dirty word in fact.

A Dirty Word: Feminism

In my house, there was a dirty word that was not allowed to be supported. It could be spoken, it could be used in derision, it could be used in a way that would silence dissent from the patriarchal status quo. That word was of course feminism. Yes, believe it or not, feminism in my home was always considered a bad thing. I could never really understand why that was the case. I mean, I grew up with two sisters.

In all my wonderings over time, all I can really ascertain is the influence of the conservative Christian patriarchal elevation of the male role as supreme and not to be questioned. I recall phrases like “bra burners”, “ratbag feminists” and so forth. Though I never saw any real consideration of any issues raised by feminism, just an absolute dismissal.

I lived within very much a conservative Christian world view, my mother’s dad was a minister, two of his brother in law’s were also ministers. They were ministers within the Anglican church. The church actively resisted allowing women to be ministers within that denomination. Even today that particular area of the Anglican church still subjugates women in this way.

I never really got it. It just made no sense to me. I always was like, well what’s wrong with equality. Perhaps it was my autistic brain attempting to cut through the bullshit. Not that I was ever free to express such views as any dissent was swiftly punished.

Times of resistance.

Within the reality of my thinking that what was wrong with feminism anyway, was a reluctance to truly appreciate it to the fullest. I can’t place completely why this is the case. I am sure it is a layering of many many issues. But suffice it to say I have never in fact labelled myself a feminist. To my own personal detriment.

I can’t reconcile the resistance. I mean I have in my heart always been in favour of equality. Always been aghast at injustice. Flowing strongly through my consciousness has always been an intense sense of fairness and longing for justice. Perhaps I had partly signed on to the lie that feminism was not about equality but denigrating of men.

Of course, feminism is no such thing and yet I resisted it.

Diversion.

I married early. Way too early! Abysmal failure would be an extremely kind way to describe that marriage. It was, in fact, a traumatic and abusive period for me personally. I experienced a lot of pain and hurt and emerged from it in a state of PTSD.

In the aftermath, I experienced a bit of a diversion and I took on the feminism as a dirty word to myself. This was a flawed reaction to experiencing some real difficulty navigating the family court system and experiencing, I guess, what many women face, not being believed about what happened and being assumed to be making it all up, or at best making exaggerations.

To my shame, I took on a mindset that was somewhat anti-feminist. Effectively assuming that feminism was not in fact interested in equality but in the denigration and reversal of patriarchy into something that elevated women at the expense of men. I was very wrong in this.

I even succumbed, to some extent, to the mantra of some of the men’s rights groups. For this, I am utterly ashamed of myself.

There is no question that some men do experience abuse and violence at the hands of women, but this is not the norm and is not in the same ballpark even as that of abuse and violence against women. What’s more, even if the frequency of such abuse and violence it does not present the very real life and death risk that violence against women does.

I’m fairly certain I have expressed this poorly.

My heart had not changed.

The reality within me was though that my heart had not changed. Still paramount was a heart for justice, a longing for equality. Inherent in my belief and thought was that all people are equal and should be treated with respect and dignity and be able to live in safety from violence and abuse.

In time I was able to see quite clearly, that not only did I see feminists standing up for women’s rights and equality in that regard but so doing in many arenas. Whether it be the treatment of refugees, racial equality, or religious freedom among other issues, the constant was the voice of feminism and feminists standing for the marginalised, the oppressed and the silenced.

Finally, I realised this was perfectly aligned with my own beliefs and heart for justice and equality. My heart was always that way inclined, even if some time was taken to realise and embrace it.

Time to claim it.

Not a dirty word at all. Something though to acknowledge a need for and to get behind. Feminism then is something I wholeheartedly embrace, something I declare myself behind.

And so here I stand a feminist. I stand for equaity, for justice, for respect and dignity, for safety and for that to be true for all. Regardless of gender, disability, sexual orientation, religious affiliation or any other classification that can be named.

In a sense I repent of my sexism, my lack of calling out patriarchal privilege. I turn from it and dare to declare that I am a feminsit.

It is not all that complex really. I just stand for equality and call out inequality where I see it.

Victorian Autism Conference.

It’s been about a week since I wrote and posted here. I have had all kinds of posts running through my head but nothing that has come to fruition and formed into anything like a remotely coherent blog post.

I have also been kind of busy in my thoughts in relation to the forthcoming Victorian Autism Conference. It’s one of those great big events that brings together therapists, researchers, autism organisations and the like. There’s good things and bad things about these great big events, even if in reality they are really designed with the professional class in mind.

This time around there does appear to be an effort to include actually autistic people. With a number of speakers being autistic people, including keynote speakers. As well as this a keynote speaker this year is Steve Silberman, of Neurotribes and Wired magazine fame. He has really come to prominence within the autism world. His wonderful work Neurotribes is perhaps the best possible piece of writing on autism that a non-autistic person could create.

I had planned to attend the conference as it was going to be my first big autism conference that I have attended. It will be all new to me, and I hope a positive thing.

It turns out though that I am not just an attendee but have been asked to be a presenter and contributor at the event. I am thankful for the opportunity to give a talk about my experience as a participant in the AutismCRC research academy last year. This was a fantastic experience and am happy to contribute to this. As well as this I will be a member of two panel discussions one which will talk about diagnosis and the other about disclosure.

I have my talk written, the powerpoint is completed and submitted. Now it is just the battle of the nerves, and the possible sleepless night. The tossing stomach has arrived on queue, as expected and all the self-doubt and questioning of myself has begun.

I’m fairly certain it will be all ok, that I will manage to deliver this talk with some level of professionalism and authenticity, but right at this moment, I am pretty much scared shitless.

It’s going to be thrilling, overwhelming, wonderful, exciting, hard, fun, exhausting. See you on the other side I guess.

That’s a wrap

Well, that’s a wrap. The ten principles of Âû and my thoughts and reflections about them have been covered. It’s been a challenging exercise to articulate some of the feelings and thinking that sits deep within me. These 10 principles really do encapsulate a lot about what it means to live as a proud autistic person in a non-autistic world.

In a sense, I long for the time when these ten principles would be obsolete and not needed because all of the stuff within them was inherent to the culture in which we live and breathe. But, alas, that is not the case at this time and embrace and promote them I must.

If you have not been following the series of blogs you the ten principles are:

1. I am Autistic. [or] I support those who are Autistic.
2. I embrace my Autism as a very significant part of my identity.
4. I embrace the belief that Autism does not need any “curing”.
5. I embrace the self-advocacy goal of “Everything about us, with us”.
6. I embrace the definition of Autism as a neuro-social difference.
7. I embrace measures directed at protecting Autistics from attack.
8. I embrace a person-centered approach to all Autism issues.
9. I embrace rigorous scientific approaches to co-occurring conditions.
10. I embrace Autistics leading their own welfare organisations.

You can read my introductory post to the series too to get a little bit more information about how this came about for me. You can also head on over to the Autistic Union facebook page and check out lots of great stuff. It’s worthwhile checking out their mission statement for a bit of info too. You will find a variety of content their including some helpful hints on how to make the groovy little circumflexes happen on your phone, your mac or your PC.

Way back when I first chose to wear the Âû it was a quick and easy choice to embrace the ten principles. I did it without a lot of deep thought. This has meant that whilst I have throughout the time I have worn it I have not wavered from my commitment to those principles, yet I have not put a lot of thought or reflection into that.

It goes without saying that within any community tensions, differences of opinion, and even arguments and personal conflict occur. Several months ago one of these personal conflicts occurred for me. I mention it as it was a conflict between myself and the founder and author of the Âû and its ten principles. It was a difficult time in some ways. It was at the time when I was having my Âû tattoo inked onto my arm.

Unfortunately I was not the only one to have a conflict with them and of course, I will not be the last. There was some discussion of people not continuing to wear their Âû any longer because of it. Personally, this was never an option, but it did prompt me to come back to the principles and ensure that I was still able to ascribe to them.

I went ahead and had my ink done. I continue to wear my Âû, and conflicts continue to happen. But the thing is Âû, though created by a single autistic is bigger than any one person. It’s a statement of solidarity, a coming out, a drawing of a line in the sand and an embracement of identity well-being.

Months have passed and not much active thought about the principles occurred for me. Life was just doing what it does and going on. Occasionally I would find myself tagged in a Facebook post, or asked directly what the Âû was all about. Life goes on.

Sometime in the last several weeks, the admin over at Autism Evolution Facebook page asked me if I had ever written about it here on my blog, and so the spark was lit that birthed this series of posts.

Working through this series has been an exercise of reflection and articulation. I am personally pleased that it was prompted. I am thankful that it has caused me to reflect and then articulate what the principles mean to me. It has been rewarding. I thank you for taking the time to stop and read my ramblings and enter my mind a little as I have shared it with you.

One thing I can say with certainty after this process is that I am even more committed to these ten principles than I was when I first fleetingly added those letters to the end of my name.

I encourage all who are autistic or move in and out of the autism world to stop and reflect on these principles and if you dare to join me in lighting it up gold for autism acceptance.

I embrace and uphold the 10 principles of Âûtistic Ûnion.

I embrace Autistics leading their own welfare organisations.

This is part 11 of an 11 part series read part 1 here

Autistics leading their own welfare organisations. Yes, it is a thing. It actually happens, contrary to the narrative we see from the big charity peak autism bodies, autistics are not locked up lost life-sucking molluscs withdrawing all that is good from the souls of those around them. When it happens we see positive outcomes. We see self-determination, autistic-rights being upheld, abuse of autistics called out, a counterpoint to the dominant narrative and most importantly enhanced the well-being of autistic people.

There’s this silly idea out there that we are not capable because we are impaired and in deficit. This is simply not true and we are in fact quite capable. We may do it differently and not the way the neurotypical world would do it, but that doesn’t make it less valuable or important. It just makes it different.

Self-Determination.

Looking around the world one does not need to look hard to see the theme of self-determination. We see it indigenous peoples leading their own organisations. It is prevalent in many disability communities. Workers unions tend to be led by, you guessed it, workers, sporting clubs tend to be led by players of the sport. These examples may not be universally true but they are a truism.

The importance of self-determination must not be underestimated. When one has control over one’s own life the outcomes are always going to be preferable. They may or may not be what is seen by the majority or the typical as preferable, but, that’s actually not relevant.

Follow your dreams we say. You can do whatever you set your mind to we say. Yet when it comes to autism society says oh but not you, we will tell you what dreams you can follow, what devices you can access, where you can live, whether you can work or not.

I embrace Autistics leading their own welfare organisations!

Autistic Rights.

When it comes to autistic rights time and again these are trampled on by organisations that are not led by autistics. One must look no further than the debacle that was, and unfortunately remains, the vaccine conspiracy. The Autism Society of America and Autism Speaks both gave oxygen and sustenance to this debacle. In fact, it took until 2015 for Autism Speaks to finally declare that vaccines do not cause autism. The Autism Society of America had the quack doctor Andrew Wakefield as a keynote speaker at their conferences.

Even now, in 2016 the National Autistic Society in the United Kingdom refuse to publicly support campaigns against quack and dangerous treatments like MMS, GcMaf and the like. When campaigners have asked them for the support they have refused to do so. The human rights of autistic individuals are put at risk when this kind of inaction occurs.

In my home country of Australia, the peak autism body in my state supports ABA and promotes it via its newsletters and website and events listings. The organisation Autism Awareness Australia regularly engages in victim blaming when issues of autistic abuse raise their heads.

Within the last 12 months a case came to light of a mother chaining and handcuffing her autistic child to their bed whilst they went shopping. The head of Autism Awareness Australia came out not to condemn the behaviour, but, in sympathy with the mother having to parent the child. Not only did she do this, she did so with no knowledge of the case, no specific information, simply a default notion that the parents of autistic children are long suffering saints and automatically their behaviour and actions can somehow be justified.

Aspect a peak body here in Australia runs a number of schools. Schools in which autistic children are locked in cages. When autism welfare organisations are not run by autistics they lose sight of the human rights of autistic individuals. These rights give way to the prevailing negative narrative of autism equals bad.

I embrace Autistics leading their own welfare organisations.

Calling out abuse.

Time and again, as alluded to above, the abuse of autistics is not called out by autism organisations. Oftentimes the people within these organisations are equally appalled at the abuse perpetrated on autistic people, yet they do not call it out, they fail to publicly speak out about it.

In Australia over the last couple of years what has been clear is that the autistic organisations that are run by actually autistic people will not fail to call out abuse. In the glaring silence by the peak autism bodies at the systemic abuse of autistic children in schools, the voice of the Autistic Family Collective has rung out calling it for what it is. Abuse.

A failure to call abuse for what it is is a tacit approval or allow it to continue. Just as a failure to call out racism allows it to fester and thrive.

It is only through autistic-run welfare organisations that we will see a real and lasting change in this.

I embrace Autistics leading their own welfare organisations.

In the end.

In the end, it is imperative that this 10th principle of Autistic Union become a wider reality. Autism has had a name for 80 odd years now and the non-autistic run organisations have failed autistics. Yes, they have made some progress, however, that progress has been made under the guise of a less not different narrative, a narrative that supports a pathologising of autistic humans as less than human and incapable of looking out for themselves.

Parent-run organisation have gained good outcomes in terms of educational and institutional change. This must be acknowledged and celebrated. However, it must also be acknowledged that this is largely made in the image of the parents. It has been largely focused on treatments, therapies and interventions that will enable autistics to appear less autistic and be better at passing as neurotypical individuals.

The non-autistic led organisations have had their opportunity. These organisations are long in the tooth and it is time for them to either get behind the neurodiversity paradigm and empower autistics to self-determination are to step aside.

An autistic led organisation does not mean and autistic only organisation. It means what it says autistic led. Just as any organisation will harness the talents and skills appropriate to bring about the best outcomes, so too will autistic led organisations to utilise the skills and talents of autistic and allistic alike to bring about the best outcomes for autistic people.

I embrace Autistic leading their own welfare organisations.

I embrace rigorous scientific approaches to co-occurring conditions.

This is part 10 of an 11 part series read part 1 here

There is no question whatsoever that autism does not need to be cured and there is no cure and there never will be a cure. This is absolutely due to autism not being a deficit, a disease, a disorder, an illness or indeed anything wrong. All scientific approaches that are dedicated to finding a cure for autism are fruitless and destined to failure. This in my mind is an absolute given.

What is in need of rigorous scientific approach is co-occurring conditions with autism, often referred to as comorbids. Just as a neurotypical person can have comorbid conditions alongside their neurotype so too can autistic and other neurodivergent people.

In fact, many autistic people have comorbid conditions, to fail to rigorously investigate and treat with the most relevant interventions would be a failure in duty of care to the autistic person. It would be akin to coming to the conclusion of oh well they’re disabled they can just sit in front of the television and exist in their own world because they are never going to amount to or achieve anything in life.

An often stated comorbid condition for autistic people is ADHD. This is always an interesting issue to consider, as ADHD is a neurodivergence in its own right. I would describe it more of a multiple neurodivergence rather than a comorbid condition. However, there are many comorbid conditions that are not other forms of neurodivergence and genuine comorbids that can and should be approached with a rigorous scientific approach.

One example is epilepsy and seizures. To fail to approach this from a rigorous scientific approach would be to condemn the person to unneeded suffering, likely physical damage to their brains and possible death as a result of seizures.

Anxiety and depression are common cormorbids and of course we treat them with appropriate interventions. There are language and learning issues, mobility issues and a host of comorbids that definitely impact the quality of life or autistic people and should be mitigated with best practice treatments that aim to enhance the life of the autistic person concerned.

Autistic Advocacy and Activism is not pretending things aren’t real.

I have come across attitudes in my travels where I am prejudged as not being concerned about comorbid conditions because I proclaim autistic pride, autistic advocacy and activism, and because I refuse to declare autism as a disease, disorder or state of lessness.

This is simply not true. I and I am fairly certain other proud autistic people are at one with me on this. That comorbid conditions are not autism, not part of autism, are life detracting and at times dangerous and should be treated.

From my own personal perspective, depression and anxiety are ever present comorbid issues for myself. I actively treat those with appropriate medications. I have done so for 20 years so far and will continue to do so for as long as it is needed.

My child who has a seizure disorder comorbid with being autistic maintains a rigorous regime of medication and ongoing relationship with a specialist neurologist. It goes without saying that that treatment is important and imperative to her quality of life. For her or her parent were to fail in this would be a failure of parental duty and could rightly be described as abuse.

I am a proud autistic person. Being autistic means I am different not less, I have a different neurology. I do not need intervention or treatment because I am autistic. I need treatment and intervention for comorbid conditions.

I thoroughly embrace rigorous scientific research into comorbids now and in the future.

Living as an autistic can be difficult at times, there is no question that autistic people face discrimination, stereotypes, myths and failures to be accommodated in many aspects of their lives. Often this is due to equating autism with a deficit. This is simply not true. However, what is true is that the comorbids many of us live with do make life difficult for us, especially if we do not access the best treatments for them.

I embrace rigorous scientific approaches to co-occurring conditions!

I embrace a person-centered approach to all Autism issues.

This is part 9 of an 11 part series read part 1 here

A person-centred approach to all autism issues. At first reading, it can be easy to wonder what on earth does that mean. For me, it encompasses a lot. It means taking everything you are faced with in the realm of autism and autistic people and drilling it all down to what it means, how it impacts and affects and of course how can I support and assist this person right in front of me.

In the realm of disabilities, autism and neurodiversity myths and stereotypes abound. A person-first approach breaks this down and drills down to the person at hand. The person in front of me. It makes me ask what is life like for this person, what does it mean for this person to be disabled, what supports for this person would be helpful.

So many services and supports are not person-centred.

Incidence after incidence shows that autism services and supports are not, in fact, person-centred at all but represent stereotypes and myths about what supports and accommodations etc that are needed by an autistic person. As an example, consider the fact that ABA is often the only funded treatment available for autistic kids.

A parent takes their child for assessment and receives a diagnosis. The next step for them is to receive an information blast that is built around a stereotype of what autistic kids need. Pamphlets about ABA, Social-Skills groups, Speech Therapy etc. A person-centred approach, I believe would take a different tack. It would move to finding out as much as possible about the individual person in front of them and dispel with the barrage of unnecessary information that is not relevant to that individual.

There is of course absolutely nothing wrong with the provision of information, it is a needed and important part of assisting parents and autistic individual. However, a person-centred approach will ensure that information is targeted and appropriate for them.

Functioning Labels and person-first language…

Oftentimes professionals within the disabilities and helping sectors will insist on the use of person-first language — ie person with autism or person has autism. This is in fact counter to a person-centred approach. The theory here is that a person is not defined by their disability and one needs to see the person first. Well, that all sounds like a good thing. It even seems like it is a person-centred approach. But the reality is something different!

If saying a person with xxx is required to see the person first, then you are not seeing the person at all you are seeing the disability.

I feel that using identity first language is far more likely to consider a person centred approach. I believe this to be the case as even though one identifies with a label such as Autistic or Aspie they are essentially saying here I am, get to know me. I’m autistic let’s get past that and get on with it.

Functioning labels such as High Functioning, Low Functioning, severe, mild, classic non-verbal etc are a real hindrance to a person-centred approach to autism issues. A huge issue in this is that they compound the view that there is this linear spectrum and each autistic person sits in a defined and marked out spot along that linear progression. This is utterly false.

A second and equally important issue is that the use of such labels conjure up an assumption of what that person will be able to do well, what they will struggle with, what therapies they will need and how best to assist them. This is the antithesis of a person-centred approach and fundamentally fails to consider the autistic person in front of them as an individual and unique person.

In the end, every autistic person is absolutely unique. Each of us will have different strengths, different challenges and different support needs. What a person-centred approach to this will do is look at the unique person, consider their life circumstances and develop the best way to assist that unique individual to achieve the very best life outcomes possible.

A person-centred approach to autism issues allows an autistic person to be and to be seen as the unique, wonderful and individual that they are.

It allows me to say “Hi there, I’m Richard and I’m autistic, no further labels needed.”

I embrace a person-centred approach to all autism issues!

I embrace measures directed at protecting Autistics from attack.

This is part 8 of an 11 part series read part 1 here

It’s true. Autistics are in need of protection. They are in need of protection as babies, as children, and as adults. The attacks come from so many different fronts. They can be physical, emotional, mental, intellectual. They are delivered by parents, siblings, governments, newspapers, charity organisations, law enforcement, therapists, researchers, doctors and so the list goes on.

You may like to dismiss this as hyperbole, or, you may say that everyone can be attacked by those sources. And there is an element of truth in that claim. But, is everyone attacked because of their neurology, the way they are wired or for just being who they are.

It is imperative that autistics be protected from attack, measures must be put in place to ensure this occurs. This is actually a difficult thing to define and explain as the attacks come in so many forms and guises. To develop measures to combat them is an ever changing and ever constant task.

Self-advocacy.

Self-advocacy is vital to the protection of autistics. As autistic people learn to self-advocate for their rights, their safety and their position as valuable human persons the ball starts rolling as a measure of protection. When an autistic self-advocates and says no I do not want that therapy, no I do not like to be referred to in that way, yes I am a complete person and similar they are asserting their humanity and declaring themselves.

This is key, it really is, even though it is a personal stance of protection it spreads. Like a grassroots, movement spreads from person to person so self-advocacy spreads from autistic to autistic.

Advocacy Networks.

The most well-known advocacy network in the autistic space is most likely the Autistic Self-Advocacy Network, of course, it is not the only one. It is a sign of what can happen when self-advocacy develops and spreads. The spin-off of this is that autistic advocates become more than self-advocates and start advocating for each other. It takes the form of bloggers, conference speakers, published authors, academics and activists.

These networks develop from a few people meeting in meet-ups through to vast social network groups of many thousands of people. Communication occurs in email, skype, youtube, text, private messaging, forums and of course face to face. The brilliance of this is the protection of each other. The helping each other to find their own voice and to become their own self-advocates.

This is a measure that is especially important. An often stated thing by parents of non-speaking autistics is that they are their child’s voice. This is false. They are not their child’s voice, what they are is a voice for their child. But what about when that voice is at odds with what is in the best interest of the autistic child. Who speaks for that autistic child when the parent pushes towards something that child does not want or is possibly harmful to that child. What then?

Activists.

At the rawer end of the measures of protection are activists. They work in a very proactive way to declare the rights of autistics, to work for their protection. Activists such as Emma Dalmayne and Fiona O’Leary work relentlessly to protect autistic children in particular from the ravages of harmful treatments enforced on them. Treatments like bleach enemas and bovine hormone injections.

Relentlessly they put themselves out there, contact the media, allow themselves to be quoted in the media, infiltrate groups and do anything in their power to bring to light the evil practices that bring damage to autistic people. These activists should be embraced and supported. At times we may disagree with methods or actions they take but they should be supported and embraced as they are working for us. They work at personal risk and regularly find themselves the target of smear campaigns and threats.

Embrace them.

In my view, it is imperative that we embrace measures to protect autistics. It is so important because we autistics are humans just like everyone else. Often we are depicted as diseased, disordered, damaged, injured, dangerous, violent and incapable. This very depiction opens the door for us to be attacked and so we need protection.

It must be remembered that autistic rights are human rights.

I embrace measures to protect autistic life and wellbeing.

I embrace the definition of Autism as a neuro-social difference.

It’s Different Not Less.

This is part 7 of an 11 part series read part 1 here

Within a whisker of time spent with any autistic advocacy people or groups and you are sure to hear or see that statement. Different Not Less. It’s a rallying cry, a hashtag, a belief statement and a fact. It is potent with truth and a declaration of advocacy and defiance.

But what is a neuro-social difference anyway?

It does seem a somewhat odd way to describe something. I am not sure of an actual technical definition of this term. In fact, it is not a thing that has overly concerned me. I guess I inferred meaning to it as I considered the ten principles of the Âû charter.

I interpret it to mean essentially that as autistics we are different not less! That is, we are wired differently, our neurology is inherently different to the so-called typical neurology. That difference, of course, is not a sickness, not an illness, not an ailment, not a disease and certainly not a deficit. It’s different, absolutely, but it sure as anything is not anything less than any other human person.

In a very real way, this particular item on the charter is one that perhaps encapsulates the very fundamentals of autistic activism and advocacy. I believe it is a bold declaration that I am not less than you, I am not other than you. I am human, completely human, just as you are.

Different outworkings…

Fundamentally, all human persons are created equal, worthy of the same respect, dignity, rights and access. Equal regardless of race, sex, religion, gender, culture, disability, number of limbs, intelligence and so the list could go on. Being autistic and therefore neurodivergent does, of course, have some different outworkings in the way we hang life together.

Commonly we have differences in communication, sensory, and social aspects of life. Unfortunately, a majority narrative has described these differences not merely as a difference but as a deficit. This is just wrong and is to be rejected.

We process information differently and so our communication is a little different, in the realm of both verbal and non-verbal. Our process sensory input differently and so our emotional, physical and intellectual responses to that input are also different. Our social interactions are different also, which, I believe to be due to the combination of the way we experience the world due to the different neurological makeup we have.

In so many ways…

In so many ways autistics make their way in life proving the point that we are different and not less. Whether it’s the likes of a Bill Gates building a successful technology empire, a Darryl Hannah making successful movies, or that person that could be sitting at the desk beside you just doing their best to make their way through life just as you are.

We may not be that social but we’re just different not less.

We may make social faux pax but we’re just different not less.

We might just speak uncomfortable truths and embarrass you or others but we are different and not less.

We might flap our hands but we’re different not less.

We just might cover our ears at loud noises but we’re different not less.

That pulsing flashing light may be difficult for us to deal with but we’re different not less.

We might walk with an unusual gait but we’re different not less.

Our intonation may be less varied than others but we’re different not less.

We might uncomfortably, for you, remember every minute detail but we’re different not less.

We may become agitated at sudden changes to the agenda but we’re different not less.

We may not use our mouth parts to talk but we’re different not less.

We might not congregate around the water cooler to discuss the goings on but we’re different not less.

Just like every other human person inhabiting this planet we are different not less.

Embrace it.

Yes, I embrace a definition of autism that says I am different not less.

Yes, I embrace a definition of autism that rejects the notion of autism as a disease a disorder and a less than complete existence.

Autism is not, and never has been disorder and disease, it is an expression of human difference and diversity.

Autistics, we’re here, and guess what we always have been and we always will be.

Abuse, Aversion, Isolation and Cages are not behaviour management or student management

Already in Australia in the last 12 months or so there have been a disturbing number of cases coming to light where autistic and other disabled children are being placed in isolation and restraint conditions to manage their behaviour.

Just this week I read about the notorious cage in the classroom situation in Canberra again. Now it’s being investigated by the United Nations. This particular case was in the media around a year ago and has come back to light due to the United Nations involvement.

Tonight as I watched the Australian ABC current affairs program 7:30 I have confronted again with another case. This time, a cage placed in the playground labelled the Top Playground. As the story unfolded I was distraught and enraged by the response of the person in charge. This person is in charge of several schools, claimed the parent’s complaint was at odds with the investigation that was conducted. In other words — we are claiming what the parent said is false.

The investigation, of course, was not independent, it was conducted by the school principal. So in effect, the parent complaint has been investigated and cast aside by the person with the most to gain by that outcome.

This would be horrendous if it was an isolated incident. But it isn’t so it is beyond horrendous. It is, in my view, a systemic problem which allows and fosters disabled children to be abused by those that are meant to foster, protect, teach and mentor them through their educational journey.

The school at the centre of this particular incident is, believe it or not, a specialist autism school, one of several in a group under the auspices of ASPECT Schools. Perhaps what’s worse is that these schools operate under the guise of ASPECT a peak autism organisation in Australia.

The question must be asked, if this can and does happen in so-called speciality autism educational environments, what hope can autistic students and their family have of being protected from abuse in any educational system in this country. Remember this is just the latest in a litany of incidents that have come to light across Australia.

To name a few, there has been the Boy in the Cage in the ACT school

There have been the children in the locked room at special schools in Bendigo Victoria

There have been incidents of pressure points being used on disabled children in special education schools in Bendigo.

There have been incidents in Western Australia and Queensland also, though I do not have the details to hand.

Children locked in dark rooms. Young boys and girls restrained to chairs. Cages constructed in classrooms and playgrounds.

This is a systemic failure of education systems across the country and something must be done about it. This can not continue to be tolerated. Action must take place. The perpetrators of this abuse must, at the very least be relieved of their positions. They simply must not be able to continue to be in positions of power and influence over vulnerable children.

In recent years our successive federal governments have rightly begun Royal Commissions and investigations in situations of the sexual abuse of children and more recently the abuse of Indigenous Children in juvenile detention. I believe this issue too is worthy of such treatment. If we are having this number of cases beginning to come to light, it is a sure thing that they are just the tip of the iceberg and there are many more disabled children experiencing abuse and trauma at the hands of the educational institutions that should are charged with caring for them.

It is a given that disabled people struggle for services and find it extremely difficult to secure meaningful employment. Let’s not add a likelihood of abuse and trauma to occur due to attendance at school.

The abuse and trauma of disabled people must stop. These schools must be called to account. Independent investigations must take place, internal investigations by those with the most to gain by a positive finding must not be tolerated.

I embrace the self-advocacy goal of “Everything about us, with us”.

Nothing about us without us…

This is part 6 of an 11 part series read part 1 here

It’s a catch-cry of the Autistic Self-Advocacy Network, “nothing about us without us”. A statement of self-determination and solidarity. A call for inclusion and real meaningful participation in the processes of treatments, therapies, policy-making and of course action.

Autistic Union, Âû, have topsy-turvied this to be “Everything About us With Us”. Putting the statement in positive terms rather than negative. To me, it’s the same meaning, include us, bring us into the conversation, give us a place at the table.

Embracing this ideal is another key aspect of wearing the Âû. There are no two ways about it, it is, in essence, a political statement. A statement that says hey, policy makers, hey peak charity groups, hey parent-run groups, here I am and I actually know something about myself, I actually have a voice, and I have self-awareness about my way of being. I want a place at the table, I want to contribute to this conversation. Yes, I am here and I am not going away.

It’s not an elitism…

At times this attitude can be seen as a bit elitist, and for sure, it can go that way. However, in essence, it is not that at all but inclusionary. One thing that “Everything about us with us” certainly is not is a negating and exclusion of non-autistic voices. What is proposed is a broadening of the expertise at the table. Enhancing the insight and wisdom in developing policy, plans and etc to be as inclusionary as they possibly can.

Absolutely invaluable to the cause is the insight, wisdom and expertise of clinicians, parents and other professionals. Foolish it would be to even attempt to silence those inputs. Tempered though they must be by the insight, wisdom and experience of actually autistic people.

When it comes to the enhancement of life outcomes for autistic people it would be utter folly to aim for an elitist ideal of only autistic voices in the conversation. Everything about us with us is a call for inclusion and participation, that is authentic and real and not just tokenistic.

The experts…

The true experts on autism are autistics. It’s real lived experience, every moment of every day of every year. This is not an elitist statement it is just a fact. No parent, no therapist, no clinician, no diagnostician, no scientist who is not autistic can know what it is to be autistic, regardless of how much they have read, written and thought about autism.

Perhaps it is fair to say we have two levels of experts when it comes to autism. We have experts on autism — autistics and experts about autism — non-autistic professionals.

For some, this is hard to hear, but hear it you must. This is key to bringing about the very best outcomes for a neurodiversity accepting the world.

No matter how much you know about autism, no matter how many autistics you know or live with, you do not live with or live autism unless you are actually autistic. That said, it does not mean your knowledge and experience is of no value, it is in fact of great value.

As an autistic the wisdom and input of non-autistics are invaluable, and that’s the rub, the best outcomes will come for all people with the input of autistic and non-autistic voices on an equal footing.

It looks like…

The big question, of course, is how does this happen, what does it look like? And, yes, it is a big question. There are lots of ways it can be done. A great example of this beginning to occur is in the field of autism research in Australia. The AutismCRC have committed to a principle of co-production in autism research. What this means is that the goal is that research on autism is completed by a team that is neurodiverse in make up.

There are many other ways this can happen. Ensuring boards have autistic members. Engaging autistic advisors in the process of policy development and planning. Lobbying governments to include autistics in their consultation processes. The list could go on and on.

And in the end the goal and hope that I embrace are simply this:

If the decision you are making impacts autism or autistic people make damn sure you are collaborating with autistic people.

I embrace the self-advocacy goal of “Everything about us, with us”.