As the landscape changes…

The landscape seems to be shifting and changing in terms of understandings and thinkings relating to autism, the spectrum and its history. It is, to borrow a phrase, ‘interesting times’. The last year has seen two new history of autism books released. Neurotribes by Steve Silberman and In a Different Key by John Donvan and Caren Zucker.

I have not yet read the latter, but the former I thoroughly enjoyed reading. Some of the history Silberman presented I was aware of but a lot of it was new information. Silberman identifies Hans Asperger as the true “discoverer” of autism as against the traditionally acredited Leo Kanner.

It is my understanding that Donvan and Zucker place Kanner back in the spotlight over and against Asperger. One thing that is very clear is that Silberman is an advocate for the neurodiversity movement whilst Donvan and Zucker for the parent movement. This is unfortunate. Regardless of whether one is for Kanner or Asperger surely a focus on autistics human rights and self-determination, as they are so integral to the neurodiversity movement should always be argued for and placed paramount in any discussion of autism, what it is, what it means, how it is lived and experienced.

In the wake of these books being published there is a bit of a battle of who was first going on. To my mind concerns over this is largely irrelevant. What is relevant is that both of these men have contributed to our knowledge of autism, its manifestation and its diagnosis. There can easily be arguments for other earlier so-called discoverers anyway. Whoever was the first to describe autism in a psychological or scientific paper is totally beside the point. The reality is that autism has always been a part of the rich fabric of human diversity.

Another issue that has arisen in the wake of these books being published is the claim that Asperger was not the apparent kind and cosiderate clinician but rather a Nazi sympathiser. A historian named Czech has apparently uncovered evidence that supports this, however it is my understanding that this evidence is yet to be released to other scholars, journalists and the wider public. What is unquestionable is that Asperger made comments in speeches that appear to be pro Nazi and there appear to be legitimate questions to be asked of his status in regard to Nazism.

It’s important we ask these questions, not because it calls into question what Asperger did or did not say about autism, but, rather, because there is a broad understanding that if the world had had his information available that the history of autism may be quite different. That where we are in our understanding now would have been reached at an earlier time. It is important we ask these questions as it does raise the question of Asperger’s seeming focus on so-called high-functioning and highly intelligent children; those so-called “little professors”, what of those that didn’t fit that narrow criteria. There is conjecture that Asperger did indeed see children of across ‘the spectrum’, however there is evidence come to light that he recommended the transfer of a child to a facility that was nothing other than a child extermination factory.

If in addition to Asperger’s autism insights he was indeed on board with the Nazi eugenics and racial cleansing agenda then we must question the rightfulness of attributing a condition in his name and certainly question the holding him up as a compassionate and caring clinician.

I believe the answers to these questions are important and I hope they come to light in the near future. I for one am about to embark on the reading of In a different key, even if only on the question of balance, as I am unashamed a proponent of the neurodiversity paradigm regardless of whether Asperger was a Nazi sympathiser or not.

Post 200…. Kanner the father of Autism…???

I have been delaying this post, wondering what it will hold. Where it will begin and where it will end up. It is the 200th post for this blog. Not every one of those posts has been on the topic of Autism but the vast majority have been directly or closely associated with Autism and being autistic. This post will be no exception.

The vast majority of these posts have been written within the last 12 months. It has been a time of voluminous writing for me. Perhaps the most content I have produced in a short time frame in my entire life. I am fairly certain the volume of my writing has been more so than my days of writing essays at university even.

I had delayed this post, wondering the topic, wanting it, I suppose to be a quality post, wondering what sort of topic I should cover. Finally I dispensed with the delay and have sat here at my trusty Macbook to begin. Here we are, now, and the topic on my mind is the reality of the where the understanding and realisation of autism, what it is and what it is not, has in large part to do with the so-called father of autism Leo Kanner.

Kanner has been oft credited with the “discovery” of autism. I concede here and now that Kanner contributed greatly to autism thought, however I believe he was also largely responsible for years of misunderstanding and misinformation in both the autism world and the wider community. He is a pivotal factor in the struggle for recognition and acceptance that adult autistics experience throughout their lives.

Furthermore his actions, I believe, were also instrumental in the failure of several generation of autistics to be diagnosed during their formative years. Autistics who are just now and in recent years, being diagnosed in their 30’s, 40’s, 50’s and yes even 60’s.

It is clear that Kanner was responsible for a lot of humanitarian deeds during his lifetime and for that he should be applauded, not least of which was the saving of many from the holocaust of the Nazi regime. These wonderful feats should not however, excuse the actions he took in order to frame the autism conversation at the time purely in favour of his own professional reputation.

There are two specifically abhorrent actions that Kanner took that have been detrimental to the autism conversation and understanding. The first being his active ignoring of the work of Hans Asperger and his team in Vienna. The second being the branding of the parents of autistics as the blame, allowing the coining of the phrase “refrigerator mothers”. Both of these have done significant harm to autistics over a long period of time.

Kanner acted to present his paper on autism, naming it then infantile autism, as though he was the only one in the psychiatric community to be looking into the area. This is patently wrong, and clearly deceptive. It is impossible that Kanner could have been unaware of the work of Hans Asperger. It is true that due to the nature of the times, that Asperger’s work was published later than Kanner’s. It was still impossible that Kanner would be unaware of Asperger’s work as Kanner himself had people working in his clinic who had worked with Asperger. It is utterly unimaginable that these colleagues would have failed to mention Asperger to him.

I have just touched on Kanner’s actions here. For a far fuller account see Silberman’s wonderful Neurotribes. The result of Kanner’s manoeuvres resulted in two significant assumptions that unfortunately remained unchallenged for far too long. Firstly, autism was a rare disease, and two that it was a childhood phenomenon only. What Kanner thought happened to these children as they grew I do not know.

Generations of autistic children grew up to be autistic adults. They are autistic whether diagnosed or not, and guess what Dr Kanner they are still autistic. Go figure.

The second aspect here is the coining of the term “refrigerator mothers”, whilst I don’t believe Kanner coined it himself he did absolutely nothing to dispel it. He never dissociated himself from it. His own patient notes gave the very idea credence as he talked of cold parenting being responsible for the autism of the children.

On discovering Kanner’s connection with this issue, I have wondered about the connection between this and the warrior autism mom phenomenon we now see. Is it possible that the autism mom warrior mentality has subconsciously arisen from the false and ridiculous claim that refrigerator mothers were the cause of autism and therefore there is a subconscious need for parents of autistic children to fight with all they have against such an assertion, even though it is now rarely spoken.

No Dr Kanner, I am not autistic due to my parents cold parenting, I am autistic because my parents had sex and conceived me.

Thankfully and wonderfully Hans Asperger’s work eventually came to light and these generations of autistic people are able to know that they are not sick, broken, disordered, vaccine injured or pathogen infested. In the wake of Rain Man and the translation of Asperger’s work autistics like myself and my children are able to understand who we are, why we are like we are and to know the freedom we find in understanding that we are not in fact broken, we are in fact just different.

The development and growth we have seen since Asperger’s work came to light has been astronomical. Thankfully the concept of autistics being thrown into institutions to rot is a thing of the past. Even within the hysteria of anti-vaccination claims, and pseudo science declaring epidemic and the media happily going along for the ride, the debate has moved on. The understanding has progressed, many in

society are able to accept autism as a neurological difference and embrace the idea that autistic people are different not less.

Imagine if Kanner had not acted to ignore the work of Asperger. Imagine how much further along the road to acceptance we would be. Imagine how much more embraced the neurodiversity paradigm would be.

No Dr Kanner you were not the father of Autism, far from it.

Days of sensory hell… Shutdown…

The impact of sensory input is a significant issue for many autistics. Sensory input comes in so many forms. We have the standard five senses that we are all generally aware of however there is also the proprioceptive and the vestibular senses as well. Those two senses relate to how we experience the world and our place in it in a spacial or kinesthetic sense.

So when it comes to sensory input we need to be aware of the fact that it is relevant to all senses. It’s not just the impact of sound and smell for example. We need to be aware of how the impact of being in a crowd can impact. How being on a moving platform for instance

can have an impact on a person.

I am sure that many people both autistic and allistic experience difficulties with sensory input. Many will find loud noise for example annoying and hard to deal with. The major difference though is for an autistic person that finds this a trigger for them that it will not just be painful or annoying but in fact it will be or lead to being debilitating.

****************

I began this post over a week ago and have been in an effective shutdown state since. Pretty much getting up eating and watching TV is about all I have managed to do successfully. Anything else has been just too much to deal with.

In the parlance of Spoon Theory I had run out of spoons and just can’t even…

This has been as a result of a difficult week away with my family. The family time could have been fantastic but it was unfortunately hi-jacked by a couple of men and a woman who seemed only to be able to enjoy life by making life miserable for all those around them! The family and I went away on a family camp. It should have been a good experience, even though it was bound to be hard to deal with just from the sensory challenges it was going to present. Being with 50 other people who I didn’t know and interacting with them. Dealing with being in environments where there would be a lot of noise and a lot of threads of noises going on. It was always going to be tough for me personally but it could have been a success. Unfortunately it wasn’t.

The reason behind this was due to two things. The absolute abysmal and selfish actions of the above mentioned people and a complete lack of insight and leadership by the camp leaders.

What I have learned from this experience is that it has underlined again the reality of how much exhaustion results from “faking it till you make it”. But even more so is the need to speak up to my safe people more clearly just how difficult a time I am having. In a situation like this again I will endeavor to speak up to my family. As it turns out they were having an almost as miserable time as I, and perhaps if I had spoken up we could have removed ourselves from the situation. It certainly would have helped in not experiencing a weeklong shutdown.

There is though, a broader lesson here. The work of autism acceptance, and disability acceptance more broadly, has a long way to go and a lot more work to do. We have made progress, but ableism is so pervasive in our world that mostly we just walk past it and many of us just do not even notice it is there.

In preparation for this camp our family were very upfront about our neurological situation. We were after all three autistics and an allistic heading of together. However that information that was shared with the organisers made not a speck of difference. There was no quiet

place anywhere to be found for example and the environment of the camp was so full of echo chamber like circumstances that it was like a living hell. The only option I was able to take up really was that of non-participation.

What made this all the worse was the fact that the two Directors of the camp are support workers in disability services. One of whom has a disabled child. Yet upon attempting to discuss issues with them during the camp a sever lack of insight was on display. The overriding attitude was that one should just suck it up and deal with it.

There were many other aspects that made this experience extremely difficult, like a programme that was published and changed at every turn without notice for example.

I come out of this experience knowing that I need to be clearer about accommodations needed and to speak up about difficulties when they occur and not trying to suck it up and just get through it.

I am left with a question that I can’t answer at this point, perhaps you can help. How do we as a society build in autism acceptance and accommodations that enable experiences like these to be positive and not negative. Surely in a society that is inclusive and not ableist a family should be able to participate in a camp such as this without it being a hell on earth experience.

Hoping against hope… Even when there is no need.

The year is 2016. A time in history where we have access to information more easily, from more sources than ever before. It is a matter of ease to google it, to bing it or whatever other search engine you choose to use. We can do this from laptop, smart phone, tablet, desktop computer, eReader, smartwatch.

Never before has it been so easy to access quality reliable evidence based information about just about anything. Never before has this been the case and yet still it seems so many people are easily swayed by snake oil sellers, and purveyors of pseudo science and fear.

Still so many hope against hope, even when it need not be.

We hope against hope for a miracle cure for cancer, for autism, for whatever the thing is that we wish not to be. We hope that a little white pill will cure-all ills. A miracle solution that is the cure-all of everything. Regardless of the science we seem just as vulnerable as when the travelling purveyors pulled their wagons behind horses all those years ago.

Take for example autism. There are a range of different snake oil solutions that are foisted upon families of autistic children. Against all

reason and logic parents are convinced to feed their kids bleach by mouth and by enema. They are conned into believing that this is required because their child’s autism is apparently caused by parasitic worms in their guts. They foolishly believe that the intestine linings that are passed with their stools are in fact worms. They are convinced to not tell anyone they are using the treatment.

In a time when we have such access to quality evidence based information this so-called miracle cure is even a thing? How can this be?

The vaccination debate is another case in point. Even though we have seen diseases such us smallpox, measles etc effectively eradicated the need for vaccination is questioned. Conspiracy theorists warn us of government and big pharma trying to poison us and control us. Parent groups scream about personal choice. The anti-vaccination movement is a blight on society that purvey lies and falsehoods with every breath they take.

In terms of autism this movement has managed to convince many that it is vaccinations that cause autism. This is primarily on the so-called findings of Andrew Wakefield from a 1998 study where he claimed a link. A study of 12 children. The fact that multiple million children studied and his findings unable to be replicated even once are apparently easily ignored.

The fact that Wakefield was discredited, stripped of his right to practice medicine and shown to have falsified his study, and to have a conflict of interest is lost on the anti-vaccination brigade.

Unfortunately, for as long as the negative narrative from autism organisations such as Autism Speaks calling for cure and finding the cause, speaking of disease and disorder parents will be vulnerable to the lies and deceit of both the snake-oil sellers and the anti-vaccination brigade. This is true to the point that parents are heard to claim they would rather their child have cancer than autism.

Still we hope against hope when no hope is needed.

I say no hope is needed, and I mean no hope for a cure, obviously we hope for the very best outcomes for our children. We hope they will be able to use their skills to achieve their dreams. But we don’t need hope for a cure. Talk of cure is simple stupidity. It is stupidity because autism is not a disease. It is not a disease so it doesn’t need a cure.

Autism is a neurological difference. A different brain development. It is not abnormal, it is different. Different does not equal abnormal.

And how does one define normal anyway?

Normal is a fiction. No one is normal.

Many are what is termed neurotypical, it’s not normal it is just typical. Typical in the way their brains or neurology is wired.

Clearly it is time to halt the narrative of disease and disorder and time to cement into public discourse the narrative of difference and diversity.

Just as being left-handed is not a disease or disorder, neither is being autistic.

Imagine the situation were reversed and neurotypical people were constantly sidelined and separated from everyday society because of their neurology. Imagine if their was a major narrative calling for a cure to Neurotypical Spectrum Disorder.

I am a proud autistic man. I am not diseased. I am not disordered. But….

Yes. I am wired differently. I am different and I am not less.

I’m hoping against hope. Hoping for a change in narrative. Hoping for a halt in the search for a cure and a surge in seeking to provide needed services to family. Hoping for inclusion and an end to ableism of autistics. Hoping to never again hear of children bleached. Hoping to never again here of children locked in cages in classrooms.

Yes I am hoping against hope for a triumph of diversity and difference. For true acceptance of the neurodiversity paradigm. For true acceptance of autistics as an integral permanent part of society.

Forget the awareness campaigns it’s time for acceptance campaigns. No more lighting it up blue and autism walks. Instead advocate for accommodations for autistic children, advocate for jobs for autistics, if you are an employer I challenge you to employ an autistic next time you have a vacancy.

Advocate for Autistic rights.

Because…

Autistic rights are human rights!

Like an echo chamber!

The room was large, a concrete block walled room with minimal furnishing. Groups of people scattered around chatting, a movie playing with volume reasonably loud. Babies and toddlers at play and at war with each other. Many conversations flow. Many people engaged in their conversations and clearly enjoying the social interactions they are having.

Some sit alone, doing jigsaw puzzles or engaging in colouring in pictures, seemingly oblivious to the echo chamber experience that is currently my life.

Strands of conversations bounce around and pass in and out of my conscious thoughts, lines from the film do the same, a person talks to me in the midst of it and it is nigh impossible to comprehend what they are wanting to communicate to me. The squeals of babies cause

pain to my head as they pierce through my ears and seem to reverberate around my skull.

It’s like being assaulted by sound echoing in every direction with constantly changing velocity around my head, my brain, my consciousness. It is a real physical pain. It may sound strange but it really is like a physical thing, just as maintaining eye contact strangely causes physical pain.

It’s like an echo chamber in a sense, yet a true echo is far more predictable. One of my most favourite places in the world is a little place in Katoomba NSW Australia called echo point. It is a lookout at the iconic Australian landmark of The Three Sisters. Hear you can confidently shout out a word and experience it predictably come back to you, hence the name of the place. You stand overlooking the picturesque Megalong Valley, it is a perfect bowl to create this effect. Even with many people partaking in the experience it is not like the experience of being in a crowded room, a busy café or restaurant. It is far easier being in that real echo place.

Many times over my life I have indulged in yelling Cooeee over that valley and enjoying the experience of it bouncing back to me. The experience of being in this room however is not one of enjoyment but of pain, of frustration, of developing overload and testing of my ability to not respond inappropriately to the sensory input that assaults me.

I know that oftentimes I do respond inappropriately to these situations. I allow myself to get to a point of not being able to bear it any longer resulting in a small explosion of frustration. Unfortunately what is an expression of frustration to me is experienced by others as an experience of aggression and anger. It is never meant to be such, yet that is how it is experienced by others.

I do believe that myself, and probably others too, as autistics could do better and managing the rising storm within us in these situations. It is a terrible feeling which compounds on the already difficult situation to see that you have evoked fear and loathing in others after you respond out of overwhelm.

I don’t pretend to know the answer to this but I feel that perhaps it is a two-pronged response that is needed. We autistics need to continue to communicate the difficulties experienced and the likely responses they will result in. The second prong of the response is that accommodation and understanding by others needs to improve.

For as long as autistics and others are snickered upon for wearing of ear defenders and ear plugs and headphones, for as long as autistics feel that others believe they should just suck it up and deal with it and just tune it out we will continue to have this issue. I as an autistic need non autistics to hear and understand that sensory overload such as this is not just a mild annoyance, it is a very difficult and impacting and often debilitating experience.

Personally the experience is debilitating in that I temporarily lose, or at least have great difficulty, accessing my spoken language to effectively communicate the difficulties I am experiencing. I think it is in overcoming this difficulty that is in large part a major contributor to my explosive response.

I wonder what your thoughts are on this…

Please comment, like, and share…

Peopling can be really exhausting…

Always this time of year is hugely exhausting. I have noticed this year after year after year. In te past the reason for this has eluded me. As it is only really been in the last year that I have accepted my autistic state of being and therefore been able to get a handle on things that are difficult and challenging for me and how autism is a factor in that.

For years I have experienced the waves of tiredness that appear to go with this time of year. The Christmas rush, the many social gatherings and then quickly followed by another round at New Years. It leaves one absolutely rung out. For years I have seen this as a weakness or failing or something that shouldn’t be. I have now realised that this is not the case it is a real and present result of the extra social interactions that are taken on.

A generalisation that is prevalent is that autistic people do not like socialising or, as I refer to it at times, peopling. This is for me a completely inaccurate belief. I enjoy being with people, I want to be with people, but, and it is a big but, It is exhausting and difficult. Years of faking it, pretending to be like everyone else, and trying to work out the social rules, trying to work out when it is my turn to speak, dealing with unwanted and painful eye contact and everything that goes with the occasion is really hard work.

I am sure I am not the only autistic who feels the same way in this regard.

What does happen, at least for me, is that I often choose not to go ahead with social things, not because I don’t want to, but because I don’t want to pay the energy and emotional cost that goes with it. I choose a safe road that will not lead to meltdown or shutdown, will not result in prolonged heightened anxiety. It’s not a bailing out or a rejection of responsibility. It is an act of self-care and it is right and appropriate.

Of course there will be many occasions where I will suck it up and go ahead with the difficult social or peopling activity. When the importance of the event outweighs the cost incurred. In a way it is a simple formula. A solving of an equation. A mathematical outcome.

I am sure that many allistic and neurotypical people would struggle to understand how simply going to a family gathering, a drink with friends or even a quiet new years eve party could be such a difficult thing. And of course they would be wondering as the struggles and issues that are present for autistics are in effect a foreign concept to them. It’s tiring to be running a continuous dialogue with yourself discussing how you are meant to respond, what you are meant to say, was that a joke or serious, am I looking like I don’t care, don’t go on

too much about your interests, is that a private conversation there or can I join in? Is it my turn to talk yet or will I be interrupting? Do they really want the truthful answer to that question or not? That dialogue coupled with the heightened anxiety of being in the situation takes a massive energy toll and whilst one manages to get through the situation the next day is often like having a massive hangover and just getting out of bed, using spoken language and completing the everyday tasks required is a real challenge to complete.

Peopling, yes it’s exhausting…

2015 it’s a wrap

Sitting, a little tipsy on a fewe glasses of wine thinking about the year gone by and wondering about the year ahead. It’s been quite a year and I guess the next will be quite a year too. In some senses we could say that about any year I guess. Each year is packed full of ups and downs, ins and

outs, goods and bads, triumphs and challenges.

Two thousand and fifteen has certainly been that for myself and family. Life goes on and it will continue to go on, that’s the way life is. Our job is in essence to keep on going day by day and make the best of what we are presented with.

There is always going to be a lot we can moan and complain about and there is always going to be a lot that we can celebrate and cheer about.

There is something about the turning of the year though, something that seems to strike a cord with us western humans, and gives us pause to reflect and consider. For many to make resolutions about the year ahead, fitness plans, giving up vices and such. Even though it is just a passing of another day we seem to ascribe a level of importance to it.

I myself realise how each year I reflect how it always, without fail, appears to fly by faster than the year before did. Time seems such a curious phenomenon, at times it seems a week is like a blink of an eye and at times like a month of Sundays. Yet we ascribe such potency to this single night of December 31.

Don’t get me wrong I believe this is a good thing. Not becuase of our tendancy to make crazy promise to ourselves that more often than not we simply are unable to keep. Not because there is any real physical significance to the particular moment of passing from one year to the next, but from that perspective that it provides an opportunity to stop and take stock, to pause and think, to allow our business to subside and our minds to think about what has been over the last twelve months and what may be over the next twelve.

I’m not making resolutions this year. I have done before and sometimes they have worked pretty well and other times not at all. That’s Okay, it really is. Sometimes things work and other times they don’t. That’s just the way life is.

I will do my very best to ensure that the year ahead is a good one. That I achieve as much success as possible, that I rise above the challenges as they present themselves. That I acknowlege there will be some failures and that I do my best to learn from them.

This year though, it really has been one out of the box. It marks the year I truly accepted that I am autistic, and that that’s ok. Not only that it is the year I came out publicly as an autistic man, a proud autistic man. It is the year I discovered my autistic tribe and community. It is the year I discovered self-advocacy and what that means.

Along with these moments came the first time I was able to accept that I am indeed a capable writer. That I am able to contribute through my written words. For the first time I had my written work published by other

websites. It was a thrill and a moment of pride for me.

Along with this cam moments of challenge. It has been a difficult year in other ways. A difficult year in my personal relationships. Challenges that continue but make me stronger.

If this next year has even a fraction of the greatness of this year it will be a great year again.

I wish you all, my readers, a happy and successful 2016, may it be full of achievements, challenges and opportunity.

Respect… It doesn’t mean you bow to anothers authority.

Scrolling through my Facebook feed today I came across a very insightful statement. It so clarified the issue of respect that it is almost startling. It places it fairly and squarely exactly in its correct context.

This really is an absolutely stunning statement. I thank my Facebook friend Amy for sharing it. The comment from the page do-as-your’re-told is a case in point also.

I recall the many versions of this so-called respect I was called to as I grew from a young boy to become a man. Things like If you want to be treated like an adult act like one — code for how dare you disagree with me and go against my will. Or perhaps my Mother’s most favourite — “Because I’m the Mum that’s why” — This one always angered me, it always made absolute no sense to me in any logical sense. It is akin to “because I said so”, but it is so ridiculous that it begs to be challenged, every time. And challenge it I did, and be subjected to a respect as authority model I was. Every single time.

I recall this being used so many times when daring to call in to question a justification for a command or directive from my mother. It was used in situations where all that was wanted was that I simply obey without question. For example when wanting to go out to an event and being told no. I would request a reason and no reason other than the “Because I am the mum that’s why” would be given. I would seek a real reason and was told to show respect for my elders. But here’s the thing, I am unable to this day to see how what I was requesting was in any way disrespectful.

At times I would request that I would like to be also treated with respect and these situations were greeted with a response along the lines of “respect has to be earned.” What kind of utter rubbish is that anyway. Surely all people are entitled to respect and dignity regardless of age, race, gender, ability, socio-economic status. Surely this is the case.

due regard for the feelings, wishes, or rights of others.

“young people’s lack of respect for their parents”

Source: Google

Due regard for the feelings, wishes, or rights of others. This does not mean an ascribing of authority. This does not mean that by ascribing respect one lowers oneself to lower status than the one being given respect. No it is in essence an acknowledgement of the humanity of the other.

And I am sure is what autistic advocacy is all about at its central core. Respect. Acceptance as fully human. It is not, as they say, rocket science. It is this very thing that is so potently embedded in the statement ‘Different Not Less’. It is so embedded in the meaning of the tagline of the group ASAN ‘Nothing About Us Without Us.’

Everyday I see fellow autistic advocates being silenced, disregarded and bullied, often by so-called autism moms who declare themselves authorities on the issue at hand. Generally what is occurring in these situations is that the autistic is calling for equal respect for their voice, or opinion on an issue as others are afforded. Unfortunately it seems that advocates such as these are often interpreted as demanding some level of authority. This is simply not true. autistic advocates seek acceptance, true acceptance. That means respect as human persons. That means not being discounted because your are:

  • Too high functioning
  • Too verbal
  • Not at the severe end of the spectrum
  • apparently intellectually inferior
  • not my child
  • don’t know my son/daughter

Along with many other sidelining statements that are used to dismiss and to disrespect for no other reason, at the core, than daring to assert the status of humanity to oneself.

I am convinced that much of the reason for this situation is the continued negative narrative that has been pervasive in relation to autism from Kanner’s refrigerator mothers, to Rimland’s search for a dietary cause and solution, to Lovaas depiction of us as non-persons and his creation of dog training methods to change us to indistinguishable from our peers, to Wakefield’s fraudulent and falsified research, to the phenomenon that is Autism Speaks, to the Anti-Vax movement, to the likes of pseudo science wacko’s like David Avocado Wolffe, to the horrific declarations and treatments by those like Kerri Rivera, Autism One, Genesis II Church, Jeff Bradstreet with their Chelation, MMS, GcMaf, hyperbaric Oxygen Chambers and whatever else they dream up with their next thought bubble.

All of this is predicated on an assumption that Autism is not different but less. This lessness is then compounded upon with characterisation of disorder, disease, vacant, locked away, and unable to communicate. Compounded again with building of mass hysteria of epidemic and catastrophe.

In the end when so much about the idea of respect is misconstrued as a sense of authority it is no wonder that autistics have to fight so hard and constantly for respect. To be treated as human. To be treated as equal.

Yes we are equal. We are Different Not Less. Please, accept as us that, accept our equality, our difference, our humanity.

Can’t find my tribe…

I awoke this morning to discover that my access to Facebook has been cut off. Again. The reason is that I am supposedly not using my real name. This is not the first time this has occurred, and I imagine it will not be the last. My crime, if you can call it that is that I have

placed the suffix Âû to my name. This is now the third time this has occurred.

The first time this occurred Facebook merely asked me to change my name to the correct name. I adjusted the spacing between the last character of my name and the  of the Âû. The second time I was required to submit evidence proving that this was in fact my name. I did this and it was accepted, after a two to three day period of time I had my account back.

This time the same occurred. I have again submitted this evidence and hopefully in the coming days I will gain back my account access.

The reality of this situation impacts me quite deeply. It leaves me feeling lost and disconnected. I am very active and connected on Facebook particularly and Social Media in general. I have a sense of losing my tribe. I am sure people would say but those online connections are not real connections. And to some extent this is true, but, in another way they are very very real and very very important.

As an autistic I find face to face communication to be quite difficult. I find text-based communication far easier to express myself and far easier to engage in.

Since this morning, upon realisation of this happening I have struggled greatly to be able to focus or concentrate on anything that I need to. I open my browser to my study and find an inability to focus. In an ideal world I would not have this dependence on these online connections, but the reality is I do. And they are not just online behind the computer connections.

If I am unable to regain the access to my account I have lost years of posts. Years of pictures. Years of connection. Access to support

groups. I started this account back in 2007 so it’s a significant portion of my life that has been posted to this service.

There is something innate I think in the human person to seek out a tribe. Much of my tribe resides inside my computer as it were. Not really inside my computer but that is where I interact with them.

It is as though my tribe has been lost. I can rebuild it I guess. Yes. Of course I can, but there is so much that simply can’t be brought back. Records of interactions, photographic memories and those things simply can’t be brought back so easily.

I am somewhat without my tribe. I need my tribe. My tribe has incalculable connectedness to so many aspects of my life.

Here’s hoping this time tomorrow I will be back amongst my tribe.

Check your privilege…

Privilege, it’s a somewhat small word, and yet its very meaning is so deep. Those of us who are of the privileged groups often dismiss its

depth of meaning without much second thought. It’s a time in history, I believe, where we have an opportunity to really assess just how deep into everything the roots of privilege go.

The dictionary tells us that privilege is:

a right, immunity, or benefit enjoyed only by a person beyond the advantages of most:

www.dictionary.com

And that certainly is true. Groups that lack privilege call on us to check our privilege before we wade into things. Before we try to be an ally. Before we try to present discourse on a debate. Before we pontificate our opinion on issues that are of real importance and justice to them. They do this because it needs to be done. And generally if we neglect to check our privilege we are very darn good at tripping over it.

I for one have tripped on my privilege plenty of times.

I have quite a bit of privilege. Whether it feels that way to me or not it is true.

Yes, I am a member of a marginalised group being an autistic man, and proudly I claim membership of this group. I encounter disadvantage as a member of this marginalised group. Being a part of this group means I encounter marginalisation, silencing, gas lighting, rejection and discrimination amongst other things. But….

I am also a member of a western social democracy

I am also a white (Caucasian)

I am also male

I am also married

I also have children.

These don’t counteract the fact that I am a member of a marginalised group but they are separate to it. They are things that assign privilege to me. Privilege that is difficult to understand. It is privilege that you can’t negate. There are special rights and entries that these things provide me that can’t be ignored or made redundant.

At this point I can sense the groans of fellow white males who may be thinking, here we go again with the anti-white anti male sentiments. I confess I have been one of those groaners int he past. But that’s not the point here. The point is that privilege is there no matter how I think or feel about it.

I will never be profiled as a potential criminal based on the pigment of my skin.

I will never have my intentions around children questioned based on my sexual orientation.

I will never be in a situation of being unable to enter a public amenity due to a non-binary gender.

I do not have to fight a legal battle to ensure the inheritance rights of my partner because of my sexual orientation.

My fitness to parent will not be questioned.

My ability to face a jury of my peers will not be

I will never ever have to face any of those issues. The reason is privilege. I need to check it.

Yes I really do. Like it or not we all do. Because I will never know what it is like to walk the streets as a person of colour and worry about how I may be treated on that basis. I will never have to be concerned that I have no chance of justice because I will be prejudged on the basis of the colour of my skin. So yes. I need to check my privilege.

I need to do this intentionally. When I write about autism issues I write as a member of that marginalised group. When mothers of autistic children write about autism they do not. THey are then in a position of needing to check their privilege.

If I were to choose to write about issues of mobility and access for those who rely on a wheelchair, I would need to check my privilege. I am not a member of that marginalised group. I have no concept what it is like to negotiate a shopping centre, or anything for that matter reliant on wheelchair transportation.

An important take-away here, and one that I have learned the hard way is that membership in one marginalised or disadvantaged group does not excuse one from checking their privilege in relation to other marginalised groups.

Does this mean we should not or can not speak into situations and issues that we have privilege in? No not at all, but it does mean we defer to those that are without privilege. This applies in many areas. For instance on the issue of marriage-equality and equal rights to parenting for LGBTIQ people, I am entitled to speak what my opinion is around this issue, I am entitled to speak in support of justice around these issues. But, I must do so, with a clear understanding that I will never be in the issue, I will never have true empathy and understanding of the issues of justice and equality that the members of this group have.

Yes. I must check my privilege and I must continue to do so.

As I have said I have learned this the hard way. I have hurt people I cared about by failing to check my privilege and being arrogant enough to believe that I was not operating from a position of privilege.

To move this post back to my world of experience, I would like to finish with the comment that I am convinced that this is the very issue that causes such angst and animosity between the so-called autism allies and autism parent community with the actually autistic community. When websites like The Mighty publish horrendous pieces like MeltDown Bingo as they recently did it is primarily because they failed to check their privilege. The Mighty claim to be a disability ally and yet they published such a horrendous piece.

It is a similar situation when we see autism parent bloggers and so-called warrior parents write about the difficulties of their autistic kids or post compromising photos, or videos of their kids in their underwear and so forth. It is that they have failed to check their privilege. And when checked by actually autistic adults about some of those things, the failure to check that privilege is clear as often the response to this is something along the lines of it is my life and my right to publish what I like. Yes got it in one, it is your privilege that enables that, and it is your child’s lake thereof that leaves them incapable of stopping it from being published.

Yes I must check my privilege and yes I must continue to do so.