The autism glass is actually more than half full…

Trigger Warning — Autistic Abuse mentioned.

So many stories, so much expression of tragedy. So much media full of so many things that are just terrible and speak of ignorance, and negativity. It’s a tragedy, of course.

But, I am here to tell you…

Parents chaining children to beds, tying them to chairs, murder suicides, but yet…

The autism glass is more than half full…

In the midst of tragedy there is life. In the midst of negativity there is joy and happiness. Pride and wonder.

Yes. Happy. I am happy to be autistic. It is who I am, it is who I always have been and whom I always will be. And.

The autism glass is more than half full.

It really is. This is not some statement of denial about the challenges and difficulties that are faced as an autistic, personally or for others. Yes it’s hard at times to negotiate the world I live in. Yes it’s hard to deal with sensory input that overloads me. To deal with social situations that I do not understand and have difficulty comprehending.

There is no denying that the pressure of living an autistic life in the midst of a neurotypical society brings challenge and difficulty and can be disabling.

There is no denying that the autistic spectrum is real and that there are infinite expressions of autism on that spectrum. But still.

The autistic glass is more than half full.

Being disabled, whether by the medical model or the social model, does not mean that the glass is half empty. It does not mean negativity, disaster and catastrophe.

It does of course mean difference and diversity. But what’s wrong with that. I would contend that is in fact a good thing. Better that we have difference and diversity than all be walking around like identical robots surely.

It’s time. Yes it’s time to declare the truth that the being autistic is not a tragedy. Being autistic is just as much as any state of being a worthy, wonderful, complete expression of humanity.

I or any other autistic are not broken. Sure I am different. Sure I struggle with some things. But the flip side of those struggles are strengths. Yes. Strengths. I have them too, just like any neurotypical person has them.

That’s right. The autistic glass is more than half full.

I have an extremely good memory. I remember things with extremely good recall, I remember the details, the situation, the words spoken, the things seen, the who, the what, and the where. This is one of my strengths. It has certainly come into play in positive ways in the odd trivia contest, but it’s so much more. It assists me in so many areas of my life. It’s a wonderful strength to have.

It contributes to my autistic glass being more than half full.

Just before writing this piece I watched a documentary about Autistic Artist Stephen Wiltshire. He happens to be a Savant Artist. He has incredible talent. When Michael began school his glass was seen by many to be less than half full and to be in fact probably more than half empty, with little hope for a positive outcome of life.

How wrong those thoughts were. Michael surely has a more than half full autistic glass.

The glass half full or less autism narrative has not been good for autistics. It continues to not be good for autistics. It is time to change that. It’s time to flood the public consciousness with the good news stories, the successes, the wonderful things that autistics achieve. It’s time to change the perception of the glass from half empty to half full.

I as an autistic are just as capable of a fulfilled life as any non autistic. In fact every autistic is capable of this.

Say no to the half empty and yes to the half full.

Change can happen, it will take a conscious effort but it can genuinely occur. This narrative can be changed. The glass can be seen as half full. It is to begin with a matter of choice and a matter of will.

It’s a choice to see the glass half full rather than half empty. To look for the positive and not the negative. To dwell on the positive and not the negative.

Yes the autistic glass is more than half full, let’s share that truth with the world at large.

I can speak for myself, even when I don’t use my mouth!

Dear Mass Media.

Please, I implore you, stop seeking out only the autism peak bodies like Autism Speaks, Autism Awareness Australia, The National Autistic Society, Aspect, Amaze to make comment on stories to connected with autism.

An autistic is locked in a cage, chained to a bed, locked in an isolation room and the media presents the voices of those that represent not the autistic but the parents or families.

In the latest chapter of these situations we see an autism peak body making justificatory and excusatory statements on their public Facebook page, and I imagine their twitter account also, for the chaining of a 16-year-old autistic person to a bed in the back room of a house.

Where media is your seeking comment from autistic voices, self advocacy groups like Autistic Self Advocacy Network?

Please, I implore you to stop.

Sincerely,

A frustrated Autistic Adult.

Well it’s not a real letter, well not yet, perhaps it will become such, but it does, I think, make a relevant point. This evening as I browsed my social media feeds, I discovered a story out of Sydney Australia of an Autistic boy chained to his bed in a back room of his house. You can read the coverage of the story here. This story is bad enough in its own right, however, it gets worse. Autism Awareness Australia, have made a post on their Facebook page, supporting not the autistic but the parents. See screenshot below:

So as this young man is transported off to hospital, the best our self-proclaimed autism awareness peak voice can do is to talk about the frustrations the mother must have felt. Really! I mean Really! What the actual hell!

On their Facebook page. Autism Awareness Australia state in the first paragraph of their company profile section:

They need to decide if this statement is true. Or they only wish to represent and support parents and caregivers.

I have had experiences with this organisation in the past, unfortunately. They do not like to be asked tough questions. They routinely block from commenting on their social media channels autistic voices who are critical or questioning of their actions or comments.

As you may imagine I am very frustrated and angry. Stories continue to emerge of autistics being subjected to abusive practices and still our mainstream media channels resort to only listening to non-autistic voices.

This is not okay. It never has been okay and it is not now okay.

Autistic voices are not hard to find, there is no reason for them not to be listened to and heard. Many autistic voices have multiple public channels through websites, Facebook, twitter and G+ for starters. They are not hard to find.

I’m fed up, not only do these non-autistic voices fail to speak up for autistics and their rights, they actively spread the falsity of the horrible life autism is, they actively resist the inclusion of autistic voices on their boards and staff.

Perhaps the biggest insult of all in this whole thing is the assumption, that autistics can not speak for themselves. The assumption that we are unable to have a voice in our own affairs is the height of insult and offence.

I am autistic. I can and do speak for myself. Please stop trying to speak for me.

I can almost hear the retort ringing in my head — “oh but you’re so high functioning, and you are verbal and intelligent” blah blah blah.

Yes. Blah. Blah. Bloody Blah.

Just because I am verbal and some autistics are not makes not a bit of difference. One does not need to use their mouth parts to express their view, opinion, voice, self-advocacy etc.

Just because I can’t speak does not mean I have nothing to say

I’m not sure of the source of this quote, I have seen it placed in many places in the disability rights movement. The reason is that it’s just so darn true and pertinent.

Autistic does not equal silent. Autistic does not equal mute. Autistic does not equal incapable of self-determination. Autistic does not equal open to be abused.

There is no excuse for abuse, child abuse, or any abuse. It is not okay regardless of who that abuse is perpetrated on. If the young man in question in this article had been a person with Cerebral Palsy for example would there be a supportive statement made for this parent. I sincerely hope not.

Just because it’s autism, does not mean the rules do not apply. Just because it’s autism does not mean that the person is open to mistreatment. Just because it’s autism does not mean that human rights do not apply.

It’s time to stop speaking for us when we can speak for ourselves. It’s time to stop speaking over us when we try to speak for ourselves. It’s time to stop disregarding our voice because it is different. It is time to stop silencing our voice when what we say is uncomfortable.

Time in fact to stop being in opposition with us and to be instead in partnership with us. To stand alongside us. To defer to us.

Our voice is to be heard and listened to, it is as important, and often more so, as the voices of the so-called peak bodies.

I call on those bodies to speak with us not against us. To amplify our voices instead of drowning them out.

The autism and the autistic communities can do better than we are doing. We can do this together. It won’t be easy but it can be done. Together we do better.

As The Bible says:

A house divided against itself will fall

Just not quite right… again.

It’s been a really long week. The job pressure has been intense, the to do list never-ending and new work just keeps on coming in. Yet another project. Yet another team, yet another client, yet more stakeholders and shareholders.

So many corridor discussions, so many off the record chats in other offices and in unofficial team meetings. Even in “social non-work” coffee catchup after work and weekends. The consensus is no more standing for it, no more status quo. It’s time to

say enough is enough and to speak up.

To actually say you don’t agree, to present an alternative, to give your actual opinion when asked for it.

The problem of course is that it’s just social chit-chat, it’s just off the record moaning and complaining mixed with a little bit of gossip and false bravado. The reality is no one is going to do anything of the sort. It will be the status quo because everyone will just sit there and accept what the boss, the line manager and the CEO have already decided. We all know it is just a look of consultation, it’s not really consultation. It’s just the look to appease the unions etc.

I’m sure many people can read the above and read the nuances, know to start with that it was all bravado and bluster. This is not the case for me. I am always getting it not quite right… again. And again. And again.

I get it not quite right because there is all these social rules, regulations and nuances that I am meant to instinctively understand. I am supposed to instinctively be able to choose the times to use which one without effort, without mistake, and without confusion.

Unfortunately I don’t. My brain is not wired that way. I am wired autistically. Neurologically different. And even then it’s not quite that simple either. As you may often here it’s a spectrum and every autistic is at a different spot on that spectrum. In fact there really are infinite possible places on that spectrum an autistic can reside.

I have many times been in the scenario outlined at the beginning of this post. In fact, after reflection down the years I realise that my getting it not quite right in these

situations and actually being the bunny that speaks up because they think that’s what you are meant to do, was a key factor in my inability to hold down employment. Particularly so in my short Primary School teaching career of 4 years.

There is this thing I will call the default position. And it’s this default position that seems to get me, and I suspect other autistics too, into situations where they manage to get it just not quite right.

what I mean by default position is that in a given situation or circumstance there is a default position or response. I don’t mean like a canned response, like, the ubiquitous greeting of:

“Hello how are you?”

“Good thanks.”

No I mean something more base than that, something that is ingrained, not taught or learned, an almost automatic instinctive response.

If asked a question it is my default response to answer factually, honestly and as correctly as I can.

If asked what I think about something my default response is to answer as if the person asking really wants to know what I think.

If I am told a time something is to occur my default position is to expect that to occur at that time.

If I state I am going to do something my default position is that people will believe that is the case and not be surprised when I do.

If asked how I am my default position is to believe they are actually interested in how I am and not that they are asking purely because they are following a social construct of the things you do.

The list can go on. I am sure there are readers who could add to the list and that quite quickly it would be quite long indeed.

These default positions seem to get me in to no end of trouble as I walk my way through life.

They have resulted in loss of jobs, lost friends and many misunderstandings in all manner of situations.

I have been labelled unkind, over critical, outspoken, negative, a glass half empty type, socially ignorant, incapable and unfit for the job amongst others.

The thing is I am not actually those things at all. I am just caught in between a default position and a misunderstanding of the social norms, rules and nuances.

Obviously I have learned that there many times when the default position is not the correct way to go in terms of what the social construct of civil society says it is.

So I have this filing cabinet, this grab-bag if you like, of rules, responses and ways of doing things in given situations. The problem, and it’s a bit of a doozy of a problem, is that no real situation is the same as the one that matches the filing cabinet or the grab bag.

Life isn’t a matter of selecting a strategy from a canned response or act according to something chosen from what is kind of like a multiple choice exam paper.

Factor in on top of this that social interaction to begin with heightens anxiety anyway resulting in an already reduced capacity to get it right. The outcome of course is predictable, another case of just not quite right… again.

It just isn’t true that many autistics are not interested in social interaction and friendships, relationships, romance, etc. It really isn’t. Well I can only really speak for myself I suppose and it certainly isn’t the case at all for me.

I crave good social interaction. I long for good friendships and other relationships. I really do. Unfortunately due to often experiencing it being just not quite right, coupled with the clear challenges due to divergent neurology it has become such a difficult thing, such a fearful thing, that disinterest appears to be the case.

And so after so many times of just not quite right… again, it’s hard to summon up the effort to be bothered to keep trying.

I wonder if others experience it like this too?

Wondering if I fit that thing…

There’s this term that I have kind of known the meaning of but not really thought about. One of those terms you hear and wonder what on earth it means. One of those terms that you don’t really worry about if it doesn’t impact you directly. This term has not been one that has been of impact to me throughout my life. The term has only really been in existence about the same amount of time as I have been alive.

The term I refer to is “twice exceptional” or “2E” as it is often abbreviated to. At first glance it is easy to wonder what on earth does that mean. A bit of reflection and you can kind of get your head around an idea of what it might mean. Twice exceptional, well a gifted child is often referred to as exceptional. A person of high IQ, a candidate

for MENSA membership.

But twice exceptional, that has to get you thinking, what is that. It is where a person has that giftedness but is coupled with some disability as well. So the first exceptional is the giftedness or high IQ and the second, then, is a diagnosed disability, such as Autism, ADHD, OCD, Sensory Processing Disorder, Auditory Processing Disorder to name a few.

A definition: http://www.giftedkids.ie/dual.html

Dual Exceptionality or twice exceptional is the term used to describe a child who is not only exceptionally able but has additional learning difficulties or a disability which can make it difficult to identify their high lintellectual ability.

As I said this is not a thing I have spent a great deal of time thinking about, but it has sparked my interest a little just recently and as I have read I find myself wondering about it all, wondering how and if I might fit in that realm of being.

My childhood education was if nothing else quite disrupted. I attended four primary schools between years K-6 and three high schools from 7–12 with a 9 month interlude after beginning year 11 leaving and returning to give it another go the next year.

My family moved many times. I lived in many many homes, in many locations. I was the proverbial new kid on the block. Add to that being an undiagnosed autistic who was considered a naughty, difficult child by my parents who considered that a good hiding delivered with a good measure of rage was the answer to any problem, followed by the banishing to the bedroom for hours upon hours on end.

Home life was not a happy place with parents and siblings that did not understand me and harshly treated me. It was not a safe and supportive place in any way shape or form.

These factors coupled together to create a childhood and adolescence where I for all intents and purposes was the perfect target to the bullies in the neighbourhood and the school. I kind of walked those years in somewhat of a daze.

On top of this was the underlying knowledge that I was somehow different to everyone else. I was different and I knew it, but didn’t know that that was an okay way to be, but lived with this sense of being somehow broken and wrong.

Little wonder I did not perform at school with any real academic success.

And yet. There were all these little moments that occurred…

In the fourth grade in the principals office as she said to my parents that I was very much of above average intelligence..

In year seven, at the half-yearly examinations, after doing no homework or assignment work throughout the semester and the teacher handing back the exams in the highest to lowest score order and discovering my result in the top few to be handed back.

In year eight being dumped up from one class level in Maths to the one above.

The odd teacher saying the odd little comment about me being smart, clever and intelligent.

And yet, never was it identified any further than this.

A prevailing memory of report cards throughout my education was a cliché’ comment from teachers effectively stating that Richard is not working to his potential.

I always thought this a horrible thing to have said. To this day I am not sure if these teachers were trying to make a point of letting me know that I was actually a clever young man.

Unfortunately I was so used to being labelled as the dumb one, the stupid one, the naughty one, the difficult one, the useless one, the failure and the never amount to anything one that I was only ever able to hear it as negative, and certainly my parents used it as a weapon against me to affirm their negative labels of me.

The internal tapes that inform my mind were well set with negative messages from an early time.

And then…

At the age of 26 I for some reason did a self-administered IQ test on a computer. To

my great surprise I scored with quite a high IQ score. I don’t recall the exact number but it was somewhere around the 140 number. Obviously not an official score but it certainly got me thinking.

Shortly after in an informal chat with a college lecturer, the lecturer said to me, something along the lines of, but Richard, you have a great mind, and I love to hear your thoughts.

These little moments were the catalyst to a beginning, a beginning of discovering that I wasn’t the dummy I always believed I was but was actually quite smart.

Identifying twice exceptionality[edit]

Children identified as twice exceptional can exhibit a wide range of traits, many of them typical of gifted children. Like those who are gifted, 2e children often show greater asynchrony than average children (that is, a larger gap between their mental age and physical age). They are often intense and highly sensitive to their emotional and physical environments. The following chart summarizes characteristics commonly seen in this population.

Typical characteristics of twice-exceptional children[10]StrengthsDeficits

Superior vocabulary
Poor social skills
Advanced ideas and opinions
High sensitivity to criticism
High levels of creativity and problem-solving ability
Lack of organizational and study skills
Extremely curious, imaginative, and inquisitive
Discrepant verbal and performance skills
Wide range of interests not related to school
Poor performance in one or more academic areas
Penetrating insight into complex issues
Difficulty with written expression
Specific talent or consuming interest area
Stubborn, opinionated demeanor
Sophisticated sense of humor
High impulsivity

The above is from the Wikipedia article on twice exceptionality here

When I read through that table I tick virtually all of them. I am left then to wonder about this whole idea of twice exceptionality. And to ask myself I wonder if…

I wonder if I should have been identified as 2E.

I wonder if I really fit the category of 2E

I wonder what might have been different if someone had identified me and given me some support.

I wonder how things might be different. Would I have been able to have gone more successfully through school.

I wonder if my social and friendships may have been better.

I wonder if my vocational life would have been more successful.

I wonder if I would have been able to discover my strengths earlier in life.

I wonder if I would have found a career I could settle in.

I wonder if it would have made any difference at all.

I wonder…

I wonder what you think….

Children and cages don’t mix.

Over the course of this year in Australia we have seen come to light a number of disturbing revelations of schools creating isolation and seclusion environments for autistic children which are nothing short of cages and prison cells.

The most recent case has come to light in a public funded school in Queensland. But there have been others, in the nations capital the ACT and in Victoria. It would be foolish to think that these are only extremely isolated cases.

Here is the media coverage seen so far.

Channel Nine’s A Curren Affair here

Channel Nine’s Today Show here

Unfortunately I am unable to embed the video here. But please go and watch it. It is essential viewing.

Autistic children are being locked in cages, they are being placed in dark rooms with no light, no ventilation and no way out.

This is a rage inducing situation. I am angry, so very angry. I am angry for the parents of these kids. I am angry even more for the kids themselves.

This is just not ok. Not in any way is it Ok.

I remember as a child being locked in my bedroom by my parents for hours on end. That was horrible and, in my view, harsh and abusive treatment. But, it did not have the added factor of no light, no ventilation, and no light.

This is cruel and inhumane treatment of children. Children are locked away and restrained by force in order to place them into the situation to begin with.

There is no question that as an autistic I face challenges with social interaction and behaviour and communication. I contend that this is largely the unwillingness my society has in accepting difference and making accommodations for that difference. But, those challenges do not negate my right to be treated with dignity respect and common humanity.

We take our autistic kids, place them in a socially dominated situation for 6–8 hours a day, in the care of inadequately trained teachers and carers. Then we wonder why there are behaviour issues to deal with.

Yes nobody said this would be easy. It just isn’t particularly easy, it can be tough, after all, behaviour is communication. And if we agree that behaviour is communication if the communication being presented is to a point that teachers feel that isolation in what is essentially a prison cell is needed, then there is something seriously wrong with the systems and social constructs in play to create the need for such communication.

There is no situation where this treatment of children is acceptable. There is no way when children should be locked away like this. I just should never ever happen.

I am so very angry about this. That my so-called democratic society can produce such terrible treatment of autistic children.

When Cecil the lion was shot, we rightly had outrage in all media forums, not least of which being social media channels. All of this was right of course. I am not complaining about this, I am however making a comparison. The lack of community outrage about these situations is disheartening.

How is it that we can raise our ire for the appalling treatment of animals yet somehow our rage is not triggered enough for a mass outcry about it to bring about change.

It’s just not good enough people.

This is never ok. What’s worse than the individual schools indulging these hate for people is the fact that the state education departments are sitting on their hands, making excuses and even defending the restraint of children. Shame on you education departments, absolute shame on you.

Of course, the problem here is yet again the presence of the pervasive negative narrative surrounding autism and autistics. Catastrophe and epidemic. The use of this language desensitises us to the fact that we are talking about real living children who have been threatened and assaulted.

The narrative must be changed from disordered and diseased to difference and diversity.

Let’s do this.

For more read: Fields of Stones: Mental Health and Mistreatment

You can say it till you’re blue in the face…

Say it loud, say it quietly, say it constantly, say it with passion, say it with anecdotes, say it whatever way you like you can even say it till you’re blue in the face. I don’t care how many times you try to say it, it’s wrong, it’s so impossibly wrong that it just isn’t funny.

Vaccines don’t cause autism. They don’t period.

Don’t give me your autism wars links. Don’t give me your natural news dot-com links. Don’t give me your vac truth links either.

Don’t bother quoting Tenpenny, or McCarthy, or Kennedy or Trump.

Vaccines don’t cause autism. They don’t Period.

I don’t want to hear about your rubbish tweets either Jim Carey. You are a funny guy, I have loved very hard at many of your movies but face it, you’re an actor not a scientist, not a doctor, not a researcher. Stick to the acting and leave the science to those qualified to do it.

Vaccines don’t cause autism. You can say it till you’re blue in the face it won’t change the fact that they don’t period.

The constant paranoid rubbish that comes out of the anti-vaccination movement would be almost funny if it actually wasn’t so serious. But it is serious. It really is serious. My creative partner here at NLTE has written from a health professionals perspective What we should really be afraid of and No shots, no school. Tricia places it in a context squarely of where it should be, the health and wellbeing of the wider community.

There is so much rhetoric about choice and personal freedom. But let’s face it that is such a misnomer that it is laughable. Saying you don’t have to follow the law and regulations of the country is like saying you have the free choice to murder, not pay taxes, not pay your car registration etc. I guess in a sense you do have the free choice but choosing not to follow those laws will result in consequences.

So where it is regulated that you vaccinate then there will be consequences for not doing so. It could be loss of access to health services, it could loss of access to education services for example.

But..

This is an issue that just won’t go away.

Millions of children have been researched to prove there is no link between autism and vaccines. Systematic review of all the research has been done. Hundreds of studies across the globe have shown that there is no link, that vaccines don’t cause autism, yet still it goes on.

But…

They continue to appeal to crazy websites that are known purveyors of fiction and lies. They appeal to the research of Andrew Wakefield. For some info about him you can see this post.

But…

They call you a shill, a sheep, a communist.

But…

They appeal to anecdotal stories of children, they know, that apparently regressed at the exact moment they had their vaccine.

But..

This is serious. Vaccines don’t cause autism, they don’t trigger autism, there is no link to autism. Shout it till you’re blue in the face it doesn’t matter it isn’t true.

But…

The most serious thing in all this is the demonization of neurological difference. These conspiracy theorists, wearers of tinfoil hats, declare epidemic, holocaust, and catastrophe.

So…

In the mind of these proponents of fiction living as someone with neurological difference is far worse than dying of a preventable disease, or even surviving a preventable disease and spending life on crutches, in an iron lung, or with lifelong reduced quality of life.

These people would have us believe that being autistic is a fate worse than death.

And worse…

Enter the likes of the snake oil sellers, the purveyors of false hope. In they come, to sell the latest so-called miracle cure.

They call autistics locked up, lost, and incapable of a quality of life.

None of it of course is true in any way. None of it.

The talk of epidemic is false — The numbers of autistic people is steady the rise in diagnosis is due to increased understanding and improved diagnostic methods.

The talk of holocaust is offensive — There is no comparison between the genocide of people and living as a neurodivegent person.

The talk of cure and cause is imbicilic — There is nothing to cure and the cause is largely irrelevant. Autistic people are not disordered or diseased they are different, the cause of what makes us that way is of no consequence and a diversion of funds away from the support services that can assist in living in a largely non autistic world.

The Consequence…

The spreading of these lies and conspiracy theories, the demonizing of autism as a fate worse than death, all adds to the negative narrative that pervades the media in presenting autism as a bad thing. It opens the door for the sellers of quack and abusive therapies, it creates a sense of devastation in the parents of autistic children as having to endure and fight against this apparently terrible worse than death condition.

It’s all of this that places autistic people in the dangerous situation they are in. Yes dangerous is not an overstatement. When there are treatments like MMS, GcMaf, Chelation and others perpetrated on autistics and no legislation to protect them. When therapies like ABA and Electro-shock therapy is allowed to be perpetrated against autistic people. Then yes it is a dangerous situation.

When we autistics can be subjected to torture and abuse and it be labelled as therapy and treatment then yes, we are in a dangerous place.

We must silence these lies and conspiracy theories.

We simply must. It’s a matter of safety and security for autistic people.

Because autistic people are human persons just like non autistic persons, and as such have the same human rights as those non autistic people.

We must change the dialogue, the narrative, away from disorder and disease and towards difference and diversity.

Yes, anti-vaxer you can say it, you can scream it, however you like, until you are blue in the face. I simply won’t hear you. I will challenge you at every turn. I will call out your rubbish and lies and present the truth.

The truth of course is that vaccines, none of them, cause autism, trigger autism or are linked to autism.

Vaccines have nothing to do with autism. It’s just that simple.

It really doesn’t have to be one against the other….

Often it seems to be that there is an undercurrent that when it comes to autism advocacy that it must be one against the other. It must be the neurotypical parents and relatives, the professional helpers and therapist set against the actually autistics. An undercurrent of standing off or standing against each other. A feature of this is an

animosity that sits between the different communities.

It doesn’t have to be this way. It would be better if it wasn’t this way.

I am absolutely committed to advocacy and that to compromise on the essential fact that autistic people should be afforded the same human rights as allistic people enjoy. This is the line in the sand that I draw from which I won’t retreat. Autistic people are human and have the same rights as anyone else. These rights should under no circumstances be compromised. Autistic people should always be encouraged and assisted to self-advocate for themselves wherever this is possible.

Also, if that self-advocacy is not possible and the family of the autistic is unable to advocate in the autistic persons best interests then the ideal is then to have another autistic person advocate on their behalf.

These are the things that could not be compromised because autistic rights really are human rights. They really are, those basic rights that are enjoyed by way of being human. The right to shelter, the right to self-determination, the right freedom from torture and abuse.

Unfortunately so often these are trampled on. One of the reasons this happens is that the different autism/autistic communities fail, refuse and choose not to listen to each other and to hear the perspectives of each of the communities and then judge them in light of the human rights of the autistic person.

I started my journey of advocating for autistic rights with a blog titled Neurotypical No Way at WordPress, I later moved across to self hosting the blog under the same title. This title was clearly provocative, and though this wasn’t an intentionally anti neurotypical title it was easily understood to be so. I later changed the title of the blog to Proud Autistic Living, still provocative, but not obviously anti-neurotypical. The thing was though that my sentiments were very much from a singularly autistic rights perspective. The consideration of the neurotypical viewpoint was generally not considered, or if it was, was very much criticised by me.

My journey in writing and reading and discussing has involved coming to a place where I assert that it is an important thing to consider and value the ideas, theories, beliefs of non autistics. This does not mean they would override or change my opinion about things or that they take any precedence over autistic voices but that they be valued, heard and respected.

During this journey I have certainly made comments and judgement upon non autistics in particular that have been harsh and at times offensive. I am truly sorry that I did this and that my own arrogance held sway and clouded my judgement to such a degree that I made such comments.

My journey has led me to move my blog over here to Never Less Than Everything, to partner with Tricia an autism mom. I am sure there are some that would question why I would make such a move, why would I close off my blog as it was beginning to become successful and move over here and begin all over again.

Prior to moving Tricia and I began to collaborate on our connecting hemispheres videos and a couple of blog entries. It became clear to me that there was the possibility of developing a collaborative voice that did not have to be at odds with itself.

Yes there is certainly going to be ideals and issues where Tricia and myself will be at odds, but, overall, our voices will compliment each other and further the cause of the human rights of autistic people and stand against the silencing, sidelining, subjecting to abusive treatments and therapies that are perpetrated upon autistic people.

Part of this journey has also included being involved with the Autism CRC research group. I attended a research academy with them and will be working as part of a team to produce a project that will be jointly written by autistics and allistics together. This

has ben somewhat of an epiphany moment in a sense. The discovery that there are in fact researcher out there that want to value the contributions, in fact work collaboratively with autistic people in a research capacity that is far beyond the simple participation of autistic people as subjects.

I have previously written about the need for unity in my posts, Unity it’s important, Autism it’s not a war. I suppose they serve as signposts along the pathway to here, where I am convinced not only of the need for unity between the differing autism and autistic communities but for the necessity of collaboration between them.

I am unashamedly a proud autistic man, and passionate about advocating for the rights of autistic people.

I add to this a passionate belief that autism professional, autistic and the family of autistics work together, listen and respect each other in order to bring about these rights for autistic people.

After all, that division of parent and autistic is often irrelevant as many of the parents of autistics are, like myself, autistic themselves and so are not just autism moms or autism dads but autistic moms and autistic dads.

It’s time to stop the stand-off. To stop the us versus them idea and stand together, united, committed and ready to endure the uncomfortable process of knocking each others rougher edges off to bring about a better future for autistic people.

It’s a call to action I guess. A call that we all autistics, autism parents, autistic parents, allies and professionals, to stand united and advocate in unison for the rights, the human rights, of autistic people everywhere. To advocate together against harmful and abusive treatments like MMS, GcMaf, Quiet Hands etc.

It’s a call to action to together change the negative narrative of the cure culture and the vaccination brigade. To silence the language of epidemic, catastrophe and holocaust that is declared by conspiracy theorists, anti-vaccinators, presidential hopefuls and autism charities.

I am convinced, absolutely convinced, we can, and I sincerely hope we will, move beyond the one against another and start to walk together.

No it really does not have to be one against the other, it can really be all of us together.

But they’re not yours they are my own…

My hands are small I know, they are not yours they are my own — Jewell.

The song hands by Jewell has always spoken deeply to my heart. It connects with

something deeply within me. I have never really thought too deeply about why and how this is but over the last few days I have been thinking about the idea of “quiet hands”. If you are unfamiliar with this you can read more about it over at Just Stimming’s Quiet Hands post. As I read this remarkable post and thought about it and the whole idea of quiet hands in preparation for the forthcoming Connecting Hemispheres episode, I think I have a bit of an idea of why this song has spoken so deeply to my soul.

Here is the song by Jewell. It’s worth taking the 3 mins or so to listen to it, whether for the first time or just one of many.

It’s a pretty simple concept. These hands are not yours they are my own. It shouldn’t be that hard a thing to get and to understand. These hands here at the end of my arms, they are mine not yours, and those at the end of your arms, they’re yours not mine. It’s not, as they say, rocket science is it.

Somehow for some reason there is this really screwed up idea that things that would never be tolerated for so-called normal children is somehow perfectly acceptable, even desirable, and tragically in some circles, considered to be best practice when it comes to autistic children.

Well no it’s not ok.

If it is abuse for your so-called normal child it’s damn well not therapy for an autistic

child. Abuse is abuse is abuse.

Just because I say that cardboard is stone doesn’t make is so. And just because a so-called therapist says abuse is therapy doesn’t make it so.

No Abuse is abuse and it should be treated as such regardless of who it is perpetrated upon.

This whole “quiet hands” goes along with the concept of “table ready” and sits within a framework of so-called therapies like applied behaviour analysis (ABA), which aims to make the autistic child indistinguishable from the allistic child.

It is, to put it bluntly, a flawed view of humanity in my view. It is in essence a world-view that says to be autistic is to be less.

In the pursuit of this goal much damage has been done to autistic people. Abuse has been perpetrated on people for no other reason than the pursuit of conformity and uniformity.

Quiet hands, is one aspect of a strategy to stop and remove self stimulatory behaviours or “Stims”. It is done so with no desire to understand what these behaviours are about, what purpose they have, what they achieve for the person displaying them, what they communicate, or how they help a neurodiverse person function in a neurotypical world.

Personally I did not experience the “quiet hands” treatment as flapping has never been a stim I have used much, what I did experience though was being yelled at, slapped, spanked and the like for jigging my legs, fidgeting and fiddling with things and rubbing my fingers together, to name a few.

Leg jigging ha always been my stim of choice. It is done so automatically that most of the time I never even realise I am doing it until I have been for some time. To this day as a 45-year-old man I still flinch both internally and at times externally, in expectation of the thump from my mother or father for doing so.

“Quiet hands” along with other aspects of ABA “therapy” has been linked to autistic people subjected to it to developing Post Traumatic Stress Disorder (PTSD). This is just not ok. People are so traumatized they develop PTSD! And for what?

The only answer to the for what is: for the benefit of those that are uncomfortable, embarrassed or seek to change autistic people to appear to be more “normal”.

“Quiet hands”, “Table Ready” and ABA are merely euphemisms for practices that are traumatic for those that are subject to them.

They must be stopped.

I am autistic, I am not less. I am different. I seek acceptance for being autistic not awareness of something that needs to be changed, eradicated or made to appear invisible.

I am autistic, I seek accommodations to assist me, not abusive treatments to change me.

The pursuit of “quiet hands” is akin to telling a person with asthma they must not use their ventolin puffer, or a person with a spinal injury that they must not use a wheel chair. It is like harking back to the days of forcing left-handed children to write with their right hand whilst sitting on their left.

Just as the aversion and conversion techniques used commonly on gay men to turn them into straight men were no more than abuse, so too is the pursuit of “quiet hands”

My hands are small I know, they are not yours they are my own…

… Only kindness matters

Imagine, a performance like this one…

There is often an element of surprise and wonder from people when they hear about actors who happen to be autistic. I’m not surprised. It makes perfect sense. I guess it’s just that some, like Dan Ackroyd and Darryl Hannah, manage to make it to the top-level of the business. But really it’s not a surprise, it’s not any great wonder, it really

isn’t.

You may be surprised that I would make this assertion. Aren’t autistic people socially and communicatively challenged? Well you may say that, I don’t. We are different but not in fact challenged. And, the reality, many of us, perform as great actors every day of every week of every year of our lives, just in order to negotiate our day-to-day lives.

We put on a persona as we go to work, we play a role as we go to school. We act out a scene as we do the grocery shopping. And oh so many more situations. In so many ways we perform oscar worthy performances many times each day.

You see we have to pretend to be normal so often. In so many situations we have to pull on our neurotypical costume and tread the boards of the stage that is life on this planet among what are termed neurotypical humans.

Whether it’s getting our hair done at the hairdressers weaving our way through the social chit-chat with the person doing our hair cut who for whatever reason seems to have an absolute need to talk about utterly inane things of no interest or consequence at a rate unimaginable.

Or perhaps it’s the chit-chat with the person serving our coffee at the cafe that wants to talk about the whether or the latest famous person to disgrace themselves. Again something of no interest or consequence. Yet we play the game and tread those board and put on a good show of appearing to be what is supposedly normal.

So it’s no surprise at all that there are autistics that have reached the upper echelon of the acting professions. Autistics are pretty darn good at putting on a performance, of being a great pretender, of going incognito of who they really are.

No surprise at all. Really it is to be expected.

If there is anything to be surprised about it is really that we don’t know of a lot more autistics who have managed the feat.

I must say I played the game for many years. From birth to my early 40’s I pretended to be a neurotypical. I played a role of appearing to be just like the masses. But I wasn’t, and I knew it. Even though it wasn’t until this time in my early 40’s that I became aware that I am in fact autistic, I knew. Yes. I knew always knew, that I was different.

I am different, I am autistic.

You know I always knew I was different, but, for so many years, for so much time, I had allowed myself to be convinced by the world at large around me that I wasn’t just different. I was less. I was broken. I was wrong.

But.

I am not less. I am to broken and I am not wrong.

It was and is the world around me that’s wrong. Wrong that I and my fellow autistics are broken.

We are not broken. We are not less and we are not wrong.

We are complete, equal and right.

And I for one am not pretending any more.

A Language of Respect…

“Language is the rubicon the divides man from beast” Max Muller

If this quote is something we would assert to be true, then it’s a serious thing, language, really is something we need to be thinking about a lot. Being careful about how we use it, where we use it, the ways we use it. Careful of how it can divide or join. How it can give respect or condescension.

The power it has must be taken into consideration when we think about the words we use, the titles we give, the names we assert for ourselves and those around us. Words have power, language, has power to build up or tear down. In the Biblical parlance it speaks of the tongue being the smallest part of the body yet having incredible power,

power to build up or tear down and admonishes that it be used wisely and carefully.

Many of us know what it’s like to try to communicate with someone who speaks a different language that we do. It is an exercise in two and fro, missteps and false starts. But, you can get there with perseverance, compromise, mutual respect and trial and error. When you do you, well, I do anyway, feel a sense of satisfaction in managing to achieve communication despite the difficulties.

When it comes to language and autism and autistic people there is, it seems, a never-ending conversation about what is the right form of language to use when referring to a an autistic person. Indeed I have made a distinct choice about language use in the last sentence, per my preference. The conversation runs along the lines of whether to use person first, or identity first language. It does also include other aspects as well, such as the use of the term on the spectrum, or on the autism spectrum.

It is and always will be my assertion that Identity First Language is the absolute preferred way of referring to autistic people. That said there are other viewpoints.

I don’t plan to outline in detail this views here but suffice it to say On the Spectrum seems to be taken as a safe middle ground position and Person first refers to a person in some variance of with/has/lives with autism.

My key point here is always that autism is a pervasive way of being that is ingrained into my neurology and so is impacting in some respects on all things I do. It is in effect a significant aspect of my identity. I was born that way, I have always lived that way, I will finish my life that way too. It is not something I have as an added extra part of myself. It is very much integral to my very being.

In broad terms it is a preference of the autistic communities, those that are the actual people who are autistic, to prefer identity first language. The disability services sector, the parental community and the health professional communities, however seem to prefer the person first option. Generally this is people who are not actually autistic asserting their preference upon those that are autistic.

I’ll just say that again. Generally the proponents of person first language for people with an autism diagnosis, are not autistic people themselves, but wish to assert their choice as the preferred language preference used to refer to those people who are autistic.

I encourage you to just stop and digest that for a moment.

Doesn’t the disability sector and society in general approve of and assert that self-determination is the best option for all people?

Yet, the self-determined view of the autistic community to be referred to as autistic rather than as a person with autism, is questioned, objected to and resisted by those that claim self-determination is the best option?

I’m a little confused here. It seems self-determination is all good as long as it tracks with what the so-called caring and helping professions say it should?

And that there is the nub of the issue isn’t it. I choose to identify as autistic and that should be respected and adhered to when others refer to me. Just as I respect the opposite choice of someone else ‘on the spectrum’ to choose to use person first language. I may not agree with that choice but I support and assert that person’s right to have and use that choice.

There is a body of parents out there that choose to identify as autism parents, that too is their right to do so, it is to me a little odd, but I respect that right. I just ask that instead of getting defensive about the identity first use of autistic and reply with platitudes like my child is more than their autism, to stop, listen and truly consider what it is those who are actually autistic are saying about the issue.

Of course I am more than just autism. I am a man, I am a father, I am left-handed. I will aways be those things. Yet, I am an autistic man, an autistic father, an autistic left-hander.

In the end if we truly assert that autism is neurological difference, if we truly believe that autism is not less than so-called normality, if we truly hold to autism as not a disease then the statement my child is more than their autism is truly redundant.

Yes. I am autistic. Yes I am autistic and I am different not less. Please listen to and respect my views and choices about my self-determination.