J is for Juggernaut

It’s a juggernaut, isn’t it a great word. I recall the very first time I read that word in a book. I was about 12 or 13 years old and it was in a book by Australian author Colin Thiele titled The Sun on The Stubble. It’s the first of three books in a trilogy about a community with German roots in a farming community in South Australia. I don’t recall all the particulars of the event but I remember that the protagonist Bruno and his friend were up to some boyhood mischief and then there was a reference to a juggernaut. I didn’t know what a juggernaut actually was but I did know from the context that it was something big, forceful and kind of unstoppable. Something that scared the stuffing out of Bruno and his mate.

So what exactly is a juggernaut? I checked it out, and it seems my initial idea and picture wasn’t too far off:

Simple Definition of juggernaut

something (such as a force, campaign, or movement) that is extremely large and powerful and cannot be stopped.

Source — Meriam- Webster

Perhaps those that have described autism as an epidemic and catastrophe would relate to calling autism a juggernaut. Of course, we know this would be totally incorrect as we know autism has always been with us. An interesting article in the Boston Globe appeared recently, which even shows an identification of it far earlier than Kanner or Asperger, even if without a name.

So no autism isn’t a campaign or movement, it is clearly not a juggernaut.

So what is a juggernaut in the autism world?

I would identify two things. Firstly I would identify the juggernaut of the Autism Mom, the fighter against autism, the hater of autism. The Bullshit Fairy has written about this phenomenon wonderfully, but be warned profanity is not spared.

This juggernaut is one that needs to be stopped. Or, perhaps at least redirected and refocussed. If a juggernaut is impossible to stop, then perhaps this juggernaut of the autism mom should be redirected. There are many negative aspects of the autism mom phenomenon.

I have some issues with aspects of the autism mom phenomenon, this juggernaut that tends to push forward with its agenda regardless of what those around it are saying. Without being hypocritical I would highlight a few aspects that I have major issues with:

A disregard for autistic voices
A labelling of adults as too high functioning
An easy association with the debunked idea of vaccines causing autism
An uncritical alignment with ABA therapy
A denial of identity first language
A hatred of autism
A constant desire for cure
A willingness to subject autistic children to treatments they would not submit allistic children to.

Just a quick list. This is not the time or place to flesh it out and explain my issues around those things. It is though a place to think about the juggernaut of the autism mom phenomenon. And this is what I think has happened. The embryo of this

juggernaut was the lack of information, support, and services available for autistic children. Diagnoses was starting to occur in the wake of Kanner’s work, parents were effectively told their children were ‘feeble-minded’ and should be institutionalised. In the light of this parents began to gather together, to seek information, to try and work out what they can do to make the lives of their children better.

Groups banded together, they started lobbying, in the lack of information available voices got loud. Good things were achieved but also things that were not so positive. Significant voices within this community of parents skewed the focus towards talk of a cure, talk of biomedical interventions and treatments. And suddenly the focus becomes not on the betterment of the life for the child but on the curing and defeating of autism itself.

This juggernaut is then bolstered by the hatred of Autism Speaks and their narratives of I am autism coming to destroy you, and a generation of lost children. Bolstered again by Andrew Wakefield and his vaccine fraud, Jenny McCarthy and her publicity tours, and of course organisations like Defeat Autism Now, and the Doctors Against Autism.

With all this negativity about autism and defeating it, curing it and eradicating it, it is no wonder that the juggernaut of the autism mom has become one that largely does not wish to listen to autistics but to just defeat autism.

It is no wonder this juggernaut has grown so large and continues to do so, particularly with the ease of misinformation published widely under the guise of factual reporting. With sites such as naturalnews and its ilk, many are fooled into believing lies and frauds and so the juggernaut goes on.

This juggernaut needs redirecting back to its original purposes of understanding and providing the best possible outcomes for autistic children and by extension autistic adults.

Another juggernaut, that is somewhat younger, somewhat smaller but growing is the juggernaut of the autistic self-advocacy movement. With the wonderful work of people like Ari Neuman and ASAN, with the many Facebook groups and pages, with the articulate and competent autistic bloggers. This juggernaut is growing, gaining momentum, becoming a force to be reckoned with.

This juggernaut is not a juggernaut of destruction, though, it is overall a juggernaut of positivity. It claims a rightful postive status for autistic individuals, children and adults alike. It makes statements like:

We are different not less
Nothing about us without us
I am actually autistic and no I don’t want to be cured
I am not sick I am just different
Embrace neurodiversity
No, I am not a burdern
Just because I can’t speak doesn’t mean I have nothing to say

This juggernaut wants to change the negative narrative. It wants to educate the wider community about what it is, what it feels

like, what the experience of being actually autistic is. It says, yes I can take my place in society and contribute just as valuable as others.

This juggernaut says no to cure, yes to care. This juggernaut says no to hate and yes to celebration. This juggernaut says awareness is a start but acceptance is the first goal, followed by celebration and onto pride.

Yes, this is a good juggernaut.

This juggernaut needs to roll on.

J is for Juggernaut.

(With thanks to Laura Moriarty for the idea for this piece).

I is for intensity…

Edit: April 2018 — As many of my followers know I am an out and visible transgender woman and this piece was written prior to beginning transition. I refer to myself here as socialised as a boy.

Interesting Note The intensity of this has lessoned remarkably since my transition began.

I can be instense. Very intense at times. Focused on a thing. Focused on a topic. Not obsessed just an intensity of interest.

Intensity though is more than just being hyperfocused, more than a special interest or hobby. Intensity is a thing in itself. I think, it may be one of the things that is common to virtually all autistic people. It is a thing that kind of crosses across issues for us.

Intensity can be something connected with sensory issues, it can be something connected with interests, something connected with our communication and even dare I say it our propensity for addiction, I think we often see it in our emotions too, when angry that anger can have a real intensity that can at times be scary, especially for those around us.

noun, plural intensities.

1.the quality or condition of being intense.

2. great energy, strength, concentration, vehemence, etc., as of activity,thought, or feeling: He went at the job with great intensity.

3. a high or extreme degree, as of cold or heat.

4. the degree or extent to which something is intense.

5. a high degree of emotional excitement; depth of feeling: The poem lacked intensity and left me unmoved.

6. the strength or sharpness of a color due especially to its degree offreedom from admixture with its complementary color.

7. Physics. magnitude, as of energy or a force per unit of area, volume,time, etc.

Synonyms

5. passion, emotion, energy, vigor.

Source- dictionary.com

I must say I find the quoted synonyms here to be really positive. They go well with the intensity of feeling and the intensity of action and dedication that often accompany the things I do, think, feel, discuss etc. Yes Passion, Emotion, Energy, Vigor. They fit well I must confess.
There are so many things that have intensity for me in life. I suspect this is true for many autistics. So many things it is hard to select just a few but I will try to talk about a couple, and of course try not to bore you all to tears. I’d like to talk about my emotional intensity, in particular, experiencing instense empathy to others with a limited capacity to express it and also the intensity of anger and meltdown. Then I would like to talk about my intensity in being tenacious with things.

Forgive me if this becomes a bit of a personal navel-gazing type of post, it just seems to me the most effective way of conveying my thoughts on this issue. If you want to just pass on this one I won’t be offended at all, it can be a little intense I know.

It has often been stated that we autistics lack empathy when in fact this is far from the truth. Some of the most empathic people I know are extremely empathetic. I feel empathy with intensity, even though I am not very good at expressing it and conveying that to those who I am feeling that empathy.

The feeling is very intense. I often find myself with tears flowing but being unable to explain to others the source, intensity, passion, sadness etc that I am feeling. As a youngster in school, I was that kid that always cried about stuff, the crybaby. I was the kid that copped lots of teasing and I suspect this was heightened for being socialised as a boy. You know, the whole humans socialised as boys don’t cry thing.

An interesting factor I find is that this intensity can be present in both real and fictional situations. I can be as deeply effected by the events in a television show or a movie as in real happening in my actual real life. I often find myself watching a show or listening to a song with unexplained deep feelings that are so intense I struggle to articulate or express them, and yet, I have a bodily response of flowing tears and shaking with the feelings. It is an intensity I don’t understand but I experience as absolutely real.

I experience anger very intensely. It can be an intense anger on behalf of others and it can be an intense anger on behalf of myself. I tend to have a very real experience of requiring this to be heard. If it is dismissed the intensity rises and rises and results in a meltdown. An angry meltdown for me is a scary, scary situation. It is scary for me and it is scary for those around me.

I yell, I scream, I accuse, I throw things. I do not become violent in the sense of hurting others and for that small mercy, I am incredibly thankful. A meltdown is such an experience of intensity that I experience it almost as though I am outside of myself. The emotional strength is so intense I somehow seperate myself from the experience. I suppose this is in some way a protection mechanism.

The scary thing in all this is, of course, the uncontrolled and uncontrollable sense of it. In the midst of it, I experience it as if in a way I am looking down from above myself watching myself yell, scream and rage. I want to intervene yet I am incapable of doing so. I experience seeing myself saying horrible things to those I love yet am unable to stop it. It is so intense, so incredibly powerful that it is impossible to find the words to even get close to explaining the feelings and emotions impacting upon me.

I see myself storming up and down hallways yelling and screaming, wanting to be heard and listened to, wanting my loved ones to understand but being in such a state that they are fearful. Oftentimes as this plays out I end up in a blubbering mess rocking in a corner. The anger subsides and gives way to intense and deep shame and regret.

Regret and shame that are focused on being so incredibly sorry and frustrated at myself. So guilty for bringing that intensity and fear to people I deeply love.

So intense that utter exhaustion ensues and many hours of sleep are required for recovery. This is an intensity I could do without.

If meltdowns like that described above are unwanted intensity, then the tenacious passion for a task or interest are very much wanted. I have many times been called stubborn and pig-headed about things, and I admit there is some truth in that for certain. However, it is more than just that it is an intensity of purpose, focus, and tenacity to completion and understanding that pervades it.

An example I recall from some years ago was when working on a friend of a friends computer system. This person had thrown their computer down the stairs in a fit of anger. I was given the job of attempting to get it working for them. I tried many things, my friend had told me to give it up as a lost cause. But no I was not going to do such a thing. I could not see the reason for why it would not boot up properly. I had inspected the components and all seemed Ok.

You’re a stubborn bastard said, my friend.

I responded with a statement along the lines of just wanting to follow it through and pursue all the possibilities. After many hours of frustration and failed attempts, I identified the problem. The onboard cache system had been fried. I disabled the cache and the system booted up perfectly. All be it without the hardware cache.

This intensity to a task can sometimes come across as obsession with things, I get that, but, it really isn’t it really is just wanting to understand and see things through. It is also something of an academic or learning journey in that as that journey to understanding occurs it opens up side-journeys forks on the road and so it seems as though a passion has become an obsession. But no it’s not an obsession it’s an intencity of focus, an intensity of interest and passion.

We’ve seen this in the great thinkers of history, the great scientists. Imagine if Einstein or Tesla did not have that intensity of focus and passion for understanding. Where would we be in our understanding of the world and everything then?

I is for intensity….

H is for Happy….

Absolutely yes, autism and happy do go together, they can go together and they must go together. There is much sadness, struggle, and suffering often associated with autism. But it’s not all that at all. I’m autistic and I am happy about it. I know many other autistics who are also happy about it.

In fact, I am in essence happier being autistic than I ever was when I didn’t know I was autistic and I was trying to be an allistic. But first:

As Pharrell says at the start — “It may seem crazy…”

But yes I am happy. A damn lot of us autistics are in fact happy about autism, happy about being autistic, happy to be able to be a part of an autistic culture and an autistic community.

Does that mean being autistic and living as a proud autistic is without a struggle, without difficulty and without problems and issues?

Absolutely not.

But happiness is not about circumstance. Happiness is not about life being easy. Happiness is not about being just like the broader world thinks you should be. Happiness is far more base level than that. Happiness is far more core than that.

Happiness, I think, derives from being comfortable in our own skin. Comfortable and accepting of ourselves.

Greater happiness is evident when a person is not at war with themselves. Greater happiness is evident when a person is not doing everything they can to try and change the essence of who they are.

Depression and anxiety are very common co-morbid conditions for autistics. It’s something I myself have had issues with for many, many years, well, diagnosed for many years but, if truth be told, I am pretty sure it has been an issue for my entire life.

H is for Happy and yes autism and happy go together.

Yes, I am happy to be autistic. I am happy that autism is a constant member of my life and my greater family.

Here’s why:

Before I was happy, I was sad.

Before I was happy, I was always angry.

Before I was happy, I was always unable to embrace myself.

Before I was happy, I truly believed I was wrong, that a wrongness emanated from within.

For the first 40 years of my life, I didn’t know I was autistic. I thought and believed I was a neurotypical, that I was like everyone else underneath. But, that I was a lesser version. A wrong version. A version unable to get it together, to complete what I was meant to complete.

I believed it because that’s what I was told. That’s what I was taught. That’s what the world around me made clear.

Rochelle, you will never amount to anything.

Rochelle get yourself together.

Rochelle can’t you be more like the rest of the group.

Rochelle , you’re a failure.

Rochelle you…..

And yet, within that thought and belief was an undeniable and unshakable in the end, a knowledge that I wasn’t like everyone else. A knowledge that I couldn’t appropriate. A knowledge seemingly to scary to grasp hold of and explore. A knowledge that was forbidden to be believed.

Consequently, childhood was a strange and somewhat surreal experience, an experience that marched on into young adulthood and towards middle age. A sense of trying to be like everyone else but being unable to quite see clearly enough to know how to do it. Oh, I could academically know how but I couldn’t really know it.

In the Christian Scriptures the writer Paul the Apostle writes in the book of 1 Corinthians chapter 13 about as a child seeing dimly but as an adult we will see clearly. Now Paul is talking about the Christian idea of salvation and sanctification, but it does make me think about life not knowing you are neurodivergent and the change that happens when you realise you are.

In my mind I often picture my pre-autistic enlightenment as that period of my life that I walked along a footpath (sidewalk) encased and surrounded by a thick mist that I couldn’t quite see through, which, upon the moment of realisation of my neurology suddenly and instantly cleared.

Suddenly and instantly I was not wrong, not less, not flawed. Just different. And you know what:

That makes me happy.

H is for happy, but…

To receive that happiness one must be more than just aware of autism.

To receive that happiness one can’t hate autism.

To receive that happiness one can’t fight autism.

To receive that happiness one must accept autism.

In time acceptance will become celebration.

In time celebration will become pride.

H is for Happy… Yes, Autism and Happy do go together…

I can see clearly now….

G is for Game On!

It is Game on time!

For too long the game has been in the hands of the professionals and the carers. In the hands of those that say they know what is best for us.

The narrative has been dominated by those that are not us. Those that are not actually autistic. Those that would remove, cure, prevent us.

The results have not been good. The results have brought us puzzle pieces. The results have brought for us organisations that hate us.

The results have brought us therapies that harm us. Campaigns to destroy us.

It has brought us torturers like:

Andrew Wakefield

Jeff Broadstreet

Kerri Rivera

The list could go on.

We have things like this:

We get advertising campaigns like this:

https://www.facebook.com/ryanhendry1994/posts/10214216051408848

(Note a parody of the add originally published by Autism Speaks).

It’s game on. No more of this. No more acceptance of BeWareness programs as actually being for actual autistics.

It’s game on, no more passively listening to anti-vaccination rubbish.

It’s game on time.

It’s time to stand up and be counted. It’s time to say no more lies. No more pathologising. No more no more no more.

I am autistic. I am here and yes I will speak out. I will tell you that I am not a disease. I am not a disorder.

For too many years the control has been in the hands of those that don’t want us.

For too many years the silencing has been the typical thing.

For too many years actually, autistics have walked through a haze a fog of alienation.

It’s game on.

G is for game on.

The game, that’s more than a game, it’s a really important thing, is to change the narrative.

The game is to stop the language of pathology.

The game is to stop the language of cure

The game is to stop in its tracks the efforts to silence and disrespect us.

The game is to permanently delete the lies of the anti-vaxers.

The game is to amplify actually autistic voices.

The game is to promote and proclaim neurodiversity

The game is to ensure that nothing about us without us is a fact, not just a slogan.

The game is to get all believing we are different not less.

The game is there to be won.

The result of the win is Acceptance, Celebration, Autistic Pride.

G is for Game on!

AutismCRC Autistic Voices Panel Discussion…

F is for Fluctuating Functioning.

It’s near on impossible to avoid hearing or reading the words High Functioning Autism/Autistic. Regardless of their validity or inadequacy at actually describing anything you will hear them in the autism world. You can hear them in many different ways, you can hear them applied to people in both negative ways and positive ways. You can hear them used as a weapon to silence or a shield of avoidance.

But you’re so high functioning.

They must be high functioning.

But you’re much more high functioning than my child.

You don’t look autistic.

Those on the higher-functioning end of the spectrum.

And so the list could go on. I’ll stop the list there before I get myself too worked up in a combination of sadness and anger at the ignorance that is perpetuated at such statements. It may sound harsh but it is true these statements betray a lack of insight and understanding of autism and autistic people.

Firstly there is no such thing as High Functioning Autism. It is not, and to the best of my knowledge never has been present in the diagnostic criteria contained in any version of the Diagnostic and Statistical Manual(DSM). The current iteration of the DSM which, is DSM5 describes autism as ASD — Autism Spectrum Disorder. It breaks this down into three levels which are variously descriptive of the severity of traits and behaviours and support needed.

To the best of my understanding the terms High Functioning Autism originated with Leo Kanner, was never a diagnostic term but a term which he described as pertaining to people diagnosed with autism who tested with a high IQ result. You may notice is said tested with a high IQ not have a high IQ. The IQ test is a standardised test, however, it is highly enculturated and saturated in its bias for particular skills in particular areas of cognition.

Just as High Functioning autism doesn’t exist, neither does low functioning. The reality is nobody really knows what they mean but everyone has some preconceived concept of what it might mean. Because of these preconceptions, there are assumptions made about autistic people based on that flawed label and what they can and can’t achieve in life. For some, the term High or Low can simply imply an ability or not to speak with mouth parts as if the ability to speak is actually an indicator of a person’s ability to function in life.

All of these misconceptions, preconceptions, and erroneous understandings do not cater for the reality that functioning is a fluctuating business. I think this is true for all people, I think this is heightened for neurodivergent people, but nevertheless it is true for all people I believe.

Anecdotal evidence for this is a quick scan of a social-media feed to see the I can’t adult today for example or perhaps the oh no I have to people today. These are snippets of the reality that some days, some moments, some months, some weeks etc people are better able to function and manage the things that are required to meet the responsibilities of their daily being.

I think for neurotypical people this can be the difference between the level of effort required to get through the day. For neurodivergent people it can be this too, but also it can be much more profound, such as:

The difference between having or not having words.

The difference between being able to self-care or not.

To eat or not to eat.

To completing a productive day or needing to hibernate under a weighted blanket, or rock in a corner, or flap and jig the day away.

Of completing a task or totally shutting down for an unknown period of time.

Yes, these fluctuating functioning things are a reality.

When a neurodivergent person says they can’t people today it’s actually a thing. A thing that they really really mean. A thing that could be the difference between total withdrawal and shut down for extended periods of time.

The really important thing to note is that the sensory and social environments have a massive impact on these fluctuations. These, of course, can not be accurately predicted and accounted for. Of course, there are some aspects that can be, we can know to certain extent that as we navigate that shopping centre there will be particular issues at hand. That’s all very well but there are so many aspects that are not able to be predicted and accounted for, like that moment your vestibular and proprioceptive security is majorly compromised by the movement of people in and out of your space as you find yourself in an unexpected large group of people.

Fluctuations in functioning come upon us slowly and quickly, with and without warning, they can build up gradually or they can come in like a bomb blast. They are real and they are a serious issue for consideration.

Please don’t call me high-functioning, please don’t call me low-functioning. Please don’t call me anything functioning.

I am autistic. Period. No further descriptors required.

F is for Fluctuating Functioning.

E is for Eye-Contact

I’ll never truly understand what the big deal with eye-contact is all about. But it’s a thing. It’s bizarre to me that it’s a thing but it is a thing. People actually get out of shape about it. I regularly see posts about it from parents in support type groups on social media. Comments along the lines of a child not providing the desired eye-contact to a parent.

I understand this is far less of an issue in some non-western cultures, which for me would be a far preferable situation because it really is difficult for me to deal with. It is a real struggle for me to maintain eye-contact. More on that soon.

I also have heard stories that some people have been unable to gain an autistic diagnosis because they gave good eye-contact. Like as if that’s a thing. The western developed culture in which I live seems to be quite obsessed about this whole eye-contact

thing.

For some reason, there seems to be some belief that concentration, empathy, attention and care are somehow linked to the fact that we have iris to iris with each other.

It makes no darn sense. It really doesn’t make any sense at all.

It’s impossible to count the number of times growing up where the intimation was made that if someone wasn’t looking you in the eye when they spoke to you that they should be treated with suspicion, or at the very least the content of what they said should be treated as such.

“Look me in the eye and tell me that” was a term often used almost interchangeably with “tell me the truth”.

Clearly this whole eye-contact thing is an issue for many autistics. It certainly is for me. I have heard many other autistics say they also find it difficult or are unable to do it. It is such a known aspect that one autistic titled their autobiography in such a way ‘Don’t Look Me in the Eye — By John Elder Robison.

Just as the saying if you’ve met one autistic person, then, you’ve met one autistic person is a truism, so too is true that there are many variances of the issues that manifest around eye contact for autistics. I can speak only from my personal perspective.

My first recollection about eye-contact is from my early school days and insistence by teachers that I should look the person I speak to in the eye. I am not sure if this was due to it not being something that was done in my home life that I was not really aware of this prior to this time or if it was more to do with my feelings of inadequacy and inferiority at home. Either could certainly be true.

In these school exchanges, I discovered that this was really hard. It was my first experience of a transferral of pain and trauma at the mere meeting of eyes across space.

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

Pain. Yes, the pain of eye-contact. It somehow actually hurts. I don’t understand how it is or why it is, but it still is. If I meet

the eyes of another and hold that meeting for more than a microsecond I experience a pain throughout my body, a painful discomfort. I can’t really define where that pain is or what sort of pain it is even, but it is a pain. I totally understand that it is rationally inexplicable, but it is still a thing and it still is valid.

Trauma yes, it is actually a traumatic thing. In addition to the pain, or perhaps the pain is a result of this next thing. This next thing is a feeling as if my very soul has been laid bare, that my every inner thought is on display, that my mind can be read, my secrets are now public. The best I can explain it is that it’s like being opened up totally from the inside out for all to see.

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

Clearly that is my unique experience. If, however, the experience of other autistics is a similar one this should be considered carefully. There are myriad programs of therapy out there that are designed to ‘encourage’ or ‘improve’ eye contact in autistic children. I believe we should be very careful about this as a society. We are in effect maintaining a regime of therapy that causes harm to autistic people.

It would surely be better, would it not, to teach society at large that some people will look you in the eye when they talk to you and some will not, neither is a sign of attention, empathy, care or quality of listening. There are better and more effective ways of gauging these things than eye-contact.

E is for eye-contact and it is far far overrated.

D is for Difference, Different, Diverse, Divergent…

Spend any amount of time around the autistic community and the wider neurodiversity movement and you will undoubtedly hear someone say, likely in exact words, but possibly paraphrased or eluded to the words:

Different Not Less!

It’s a catchcry, an anthem, a statement, an idea, a rallying cry. An article of faith.

But it’s more. It is a truth.

Across society, in school, in training, in colleges, in motivational speeches we hear it a lot. Don’t be ordinary, be different, stand out from the crowd, let your light shine. There are many metaphors or idioms that convey the message. The message to not be like everyone else but to be the very best you can be. Be all you possibly can be.

Funnily enough, that message is Be Different.

I guess they don’t mean neuro-different. Just different that fits a particular viewpoint of what different might mean.

Newsflash: Everyone is different and it does not make them any less a human person.

This world we inhabit is full of mixed messages and contradiction. In many parts of the world, on the one hand, is the message to stand out from the crowd whilst at the same time we push ourselves and each other through a sausage machine of sameness. Primary School, High School, University, Work.

That’s the right of passage to humanity apparently.

It is widely believed in the scientific community that autism is a genetic difference. Whether this difference is pre-conception or begins sometime during a pregnancy is not established. So an autistic child is born just like a non-autistic child but guess what we’re just a little bit different.

Yes, a little bit different but not any bit less.

In the years after Autism was being described and in its infancy of understanding a man by the name of Ivaar Lovaas came up with a behavioural therapy, the goal of this therapy was and remains, to eradicate the visible difference between the autistic and the allistic child. Autistics in his view were not, in fact, humans but sub-type human. In effect some kind of empty shells

that needed to be somehow filled with humanity in order to be completed. I would suggest you read Steve Silberman’s excellent work Neurotribes to flesh this out.

The different not less cry continues to be needed because of such beliefs and the prevalence of such therapies.

Different, difference, divergence is a good thing.

Imagine we didn’t have different thinkers. Would we even have science? Would we have Trigonometry, Music, Pythagoras?

I have no idea if Einstein was really autistic. Many say yes, some say no. But what is certain is that he was indeed different. He certainly did not fit into the everyday mould of what was considered to be normal and typical.

Autistic and otherly neurodivergent people are and have always been present in our society, they always will be.

Imagine no Mozart. Now that would leave us less.

Without difference humanity would certainly be less.

D is for difference. And dare I say it humanity must learn to embrace it.

D is for difference. Yes, I am different, and damn it I am glad!

One thing that I have observed quite a bit around the autism parent community is a tendency to say things along the lines of I love him, he is just different. She is not less she is my supergirl. This is a great thing, however, at the same time many of those that make such claims are still at the same time determined to remove particular behaviours, teach particular social rules to be followed and engage in compliance training. The question I have on this, is, if you truly do embrace difference then why does the child need to be changed?

D is for difference and if we truly embrace difference then we would seek to understand why autistics stim rather than attempting to remove that behaviour. To understand why I don’t look you in the eye and acknowledge the truth that it doesn’t mean I am not listening or I am to be treated with suspicion.

D is for difference. Embrace it.

Different Not Less.

C is for Communication

C is for Communication…

Communication is one of the go to considerations when it comes to autism. Unfortunately often communication is often used in a context when what really is meant is speech or talking.

Personally, I don’t remember ever having difficulty with learning to speak or using my mouth parts as a communication device, however, I do recall being referred to as a late talker. I was born in 1970, so minimal understanding was out there that could have identified me as autistic way back when.

I do however at times have non-verbal times. Times where I just can’t get the words to come out. Sometimes I see those very words as if on a screen in my head but I am just unable to get my mouth parts to utter them.

I can get to the very point of opening my mouth and try to begin a conversation but simply the words are not there. Different times I am able to type the words but not say the words. Sometimes even different words can come but not the words I intended.

All of these things are communication difference. I am inclined to think that all autistics will have communication difference. The official DSM5 documentation describes it thus — -

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Source — DSM5

But I take issue at the use of the word deficit. Is difference necessarily deficit?

My issue is this, I think. Communication is far more than just words. Expressing that communication in a different way is not inherently less than what is perceived to be the typical form of that expression.

In short difference is not equal to a deficit.

Absolutely I have issues with communication. Absolutely it can and is difficult to convey what I wish to convey. But I ask, is that deficit or is it just difference.

If the autistics of the world were the majority then it would be feasible that neurotypical communication norms were considered to be a deficit. And that would be no less an offence than what describing autistic communication is as a deficit.

Communication is almost like a rite of passage to connection with people who humans seem to inherently seek out and desire.

https://youtu.be/UTx12y42Xv4

A wonderful journey to communication that works for Dillan. No, it’s not speech, and why that may make communication with Dillan more effort, it certainly does not make it less valid or of a lesser quality.

As Dillan says he had ‘no choice but to create relationships with his animals’. Surely this is a sign that we autistics are not un-empathetic emotionless beings. That we too desire connection and that connection is facilitated by communication.

Communication is a rite of passage to that connection. It doesn’t matter if it is facilitated by a device like an iPad or other type based device. It doesn’t matter if it is words from our mouths or pictures from a PECS system. Whether our words come from our mouth or from an Augmented and Adaptive Communication system, our words are valid, our words are our words and they are valuable, important and dare I say it essential.

Communication, of course, is not limited to words whether from mouths or other devices. Communication is on display everywhere. It is visual, it is auditory it is behaviour.

I hear often in parent heavy autism groups, often, things along the lines of ‘I am my child’s voice’ and ‘my child has no communication’. This is not true. Every human has communication. Every human has a voice it just may not meet the traditional idea of what a voice is.

To the parents of non-verbal autistics, I implore you to not seek to be your child’s voice but instead to work ever so hard to help them find their very own voice. Their voice is there.

There are a number of autistic bloggers who have been declared “low-functioning” and even intellectually disabled. Those declarations have been due predominantly due to a lack of speech. If you have read their work you would not know they were

unable to speak. You quite possibly have already read some of those words.

Yes, communication is often a challenge for autistics. But it is not a deficit it is a difference. It is considered a deficit and I get that, but, it’s a deficit deemed by those who make the rules. If autistics made the rules perhaps a very different rule set would exist.

C is for communication and just because I communicate differently does not mean message is of less value.

As a non-speaking friend of mine has on the back of her wheelchair — “Just because I can not speak does not mean I have nothing to say.”

B is for band-aid….

The young boy runs out of the dirt and gravel driveway and onto the street makes a sharp left hand turn onto the bitumen road. His foot slips as he makes that tight turning. The bitumen is old and not smooth. That type of bitumen that is not the new style smooth road surface but consists of blue metal pieces joined together in tar. It is sharp on bare feet, even sharper when making contact with fast travelling knees.

The young boy’s foot slips, right out from underneath him. Unable to recover and set himself right the momentum propels him forward and downwards. Downwards onto the rough and sharp bitumen road surface. A left knee crashes into that surface.

The boy squeals in pain. Cries. Recovers and wipes away the tears and dares to look at his knee. At first glance, it looks like a bump and no damage done. But, then, it begins to ooze from the edges of the torn skin, that tell-tale red substance that is almost guaranteed to produce a new flow of tears in a young child. And yes, that guarantee pays off. The tears begin again to flow as the boy picks himself up and hobbles inside to find comfort from a parent. Comfort and of course that most magical of childhood items. A Band-Aid.

After some comforting words, a bit of antiseptic, and the application of the all-important band-aid, all seems to be right in the world of the young boy again. A little more tentatively the boy travels back out the driveway and onto the road to pursue whatever games or adventures were on his mind before that nasty mishap.

Ah, the power of a band-aid. As a child it had all powerful magical properties that could not be explained, but, absolute faith in them was an almost universal tenet of childhood. Just put a band-aid on it and all will be well was almost a creedal statement.

Put a band-aid on it and fix it. Stop the blood, stop the hurt, stop the tears.

The tendency of children to have absolute faith in simple things is certainly something that from the perspective of adulthood is almost hard to fathom. How can one display such trust in a band-aid? A little piece of plastic or fabric.

Children grow up and realisation sets in that indeed a band-aid is not a magical item, it is not a cure-all and it can, in fact, be something that can cause a wound to fester, this especially true when a wound needs to breathe, to have access to air a fundamental element of life to aid it in healing.

In life, we learn that in fact band-aids can’t be relied on at all. There is even a kind of metaphor for a temporary or stop-gap, or perhaps a less than adequate fix for a problem. We call it the band-aid solution. It rarely works as a final solution or a satisfactory way of dealing with an issue.

Autism is an issue. Being autistic is an issue. It is an issue that doesn’t need a band-aid solution. It doesn’t need a solution at all in fact. Acceptance is what it needs, a celebration is what it needs, pride in it is what it needs.

Having said that there is no question that both living as an autistic or as a sibling of an autistic or as a parent or carer or friend of an autistic is all fun and no hard times. It is. That goes without saying. A band-aid though is not what is needed. It is not anything other than a contribution to the isolation, abuse, silencing and disenfranchising of autistic people, children, and adults alike.

Both my autistic children were diagnosed prior to myself. Prior to my own journey of discovery of who I am. That diagnosis was presented as a medical issue that needs to be solved or managed. Band-aids were offered.

As band-aids go I as a parent was offered fairly innocuous ones for my children. Things like speech therapy, social skills and the like.

There was one band-aid that was offered that was not so innocuous, though. It was the band-aid known as ABA or Applied Behavior Analysis. This band-aid is touted as a cure-all, touted as something that will make the autism disappear. Blind childlike trust and faith in this band-aid is encouraged and promoted.

This is the type of band-aid that makes the wound fester and grow. It festers into a very dangerous thing. A thing that may be dormant for some time but it will not remain dormant forever. It will at some point manifest itself.

The wound that festers is not autism either, autism is not ever a wound. The wound is the hurt and pain and discomfort of being constantly berated for being yourself and being coerced into being something you are not. Being taught to pretend that you are not who you are but some imaginary person that you are required to pretend to be.

You are required to pretend to be this person in order to gain treats. In order to do your favourite things. In order to engage your hobbies.

If you fail to pretend to be this person you are punished with “aversives”, if you fail to pretend to be this person that you are not you are further traumatised.

This band-aid solution for a so-called evidence-based treatment has been spoken out against by those it is subjected to time and time again. Yet still blind faith in it is touted by many autism organisations around the world.

This band-aid solution should be rejected.

I am out of space here to pontificate further on other band-aid solutions for autism that should be rejected so I will just list a few:

MMS, Chelation, Fecal transplants, GcMaf, HBO chambers.

All of these are to be rejected. They all cause wounds, wounds that will fester and in some cases fatally so.

B is for Band-aid.

Band-aids have their place. But a band-aid on something that is not a wound, an illness or a sickness is not only a waste of time and resources but an incredibly dangerous practice.

Band-aids used in the wrong circumstance create wounds that fester.

B is for Band-aid.

B is for Band-aid not required…