Connecting Hemispheres

As I discussed in An Exciting Collaboration I have been working with Never Less Than Everything in a vodcast project. We spent some time yesterday recording our first video. A bit of an intro to us. Trish worked hard while I slept editing and has marvellously got it ready for public consumption.

It’s a thing of beauty, well I guess I am rightly biased about it all. But in all seriousness I believe this to be a good start to what I hope becomes a great forum for exploring and discussing many different issues and ideas around being autistic, autism and parenting autistic kids.

I invite you to watch below. Or at our You Tube Channel

If you like it we invite you to give it a good old thumbs up.

We also invite you to like our Facebook page over Here.

It’s been a real labour of love working on this project. I hope you find it informative, entertaining and inspiring. I am inspired to be working on this with a wonderful person who I am thankful to be able to say is becoming a wonderful friend.

Thanks Trish. You rock.

And of course. We welcome any sharing as widely as possible.

Reconnecting the disconnected narratives

It’s so easy to miss the target you are shooting for. Perhaps target sounds harsh but the reality is it is a target. The target is the very best outcomes for the autistic children of this world. That they be seen as different not less. That they not be seen to

be disordered and diseased. That they not be made to feel they must change and be pretend to be something they are not.

As an autistic adult, a proud autistic adult I want to see that autistic children do not miss out on the best opportunities to reach everything they can be. I want to do my very best to ensure they don’t suffer the bullying and the like that I endured growing up.

As a proud autistic adult I will not stand by and say and do nothing whilst children are terrorized by harmful, abusive, unsafe quack treatments to try to change them into something that they are not.

Sometimes I miss the target. Sometimes I miss it a little sometimes I miss it a lot. Sometimes I cause offence, sometimes I am offended. Sometimes I am downright rude and downright angry. For what I believe are the best of reasons. The protection of and advocacy for autistic children.

Sometimes when we communicate it’s like when one is on the telephone with a crossed line, or perhaps in more modern parlance the wi-fi is not working correctly, the bandwidth is not enough and the lag and latency is causing issues and both
sides of the conversation seem to be talking over each other. In so doing we miss what each other are saying. We catch bits and pieces and we miss bits and pieces and we focus on the little things that don’t matter so much. The things that divide us. Not the things that unite us.

Autism, neurodiversity and neurodivergence and most of all love and care and concern humanity are the things that unite us. United in wanting the very best for autistics young and old. These are the things we should keep in the forefront of our mind as we engage, whether we are autistic person or autism parent, or, indeed, autistic parent.

One thing is true and pure and not negotiable and that is that autistic adults seek to engage autism parents to speak for their

children and not against them. They seek to share that lived experience in the hope that it will help the children of the autism parents. I speak for myself purely when I say I do not pretend to or attempt to speak for the children of autism parents. It is not possible for me to do this even if it was my intention.

What I can do is share that lived experience. That lived experience is not the same as anyone else’s but it needs to be said that lived experience will always be a more empathic and sympathetic understanding of what the lived experience of another autistic person is, than it can ever be for any allistic person be they parent, psychologist, psychiatrist, speech therapist, occupational therapist or any therapist.

It makes sense that no parent wants to hear that!

I get that!

It doesn’t change it though, and, it doesn’t mean that I claim to know the child better than the parent. No never could that be. It is just that I as an autistic person have an insight into this autistic way of being that a non autistic person just can’t have. There is nothing superior about it and nothing inferior about allistic being either. It’s different not less. That applies just as much to the allistic as the autistic.

Very easily both the autistic community and the autism parent community get upset with each other. They hurl insults, they block each others, they disparage one another. There is a lot of feeling involved. Emotion runs raw and leaks out in so many ways. Autistics feel their experiences and insights are discarded and disregarded. Parents feel their care, love and acceptance

of their children is called into question.

In reality possibly neither of these things are what is going on, but the feelings run raw and strong, feeling are hurt egos are dinted.

What to do?

Let’s grasp together what we have in common. The care, concern, love and protection of the children of our world. Let’s stand in unity in that. Let’s hold that in the forefront of our minds and work together to seek the very best for the kids of our world.

We stand in common. We are all different. Different races, genders, faiths, ages, and worldview, but, we stand in common for the kids.

Father’s day, joy and exhaustion…

Emerging from sleep and awaking to see my three girls waiting at the end of the bed to greet me and wish me a happy father’s day is such a treat. A moment of joy and wonder that I could have been a part in the creation of these three wonderful lives.

That I have the privilege and responsibility of sharing life with them, being their dad. The joy on my little Bonnie’s face as she hands over her gift proudly purchased at the father’s day stall at school.

Oh what joy it is. Oh what pride. Oh what privilege.

After sharing some time reading cars and opening gifts, giving thanks to and for my wonderful girls I am told that I must stay in bed. It is a command I have no interest in going against.

Arriving a few minutes later is a tray of breakfast, a couple of eggs on toast, some tomato, spinach and a hash brown. Delivered by a sweet Bonnie with a grin from ear to ear. A smile so wide and so loving it could melt I am sure melt the coldest of hearts in an instant.

This father’s day breakfast was such a joy, no better eggs could I ever be found in the finest of restaurants anywhere in the

world. No matter the quality they could never contain the joy, the pride and the love that were cooked into my breakfast eggs this morning.

After eating the eggs and enjoying the joy of gifts received and love imparted I spent a lazy morning and early afternoon basking in the glow of that joy and love. Dozing and thinking about how truly wonderful it is to share my life with these girls and my wonderful partner Andrea.

I am a very emotional fellow, not so good at the expressing of that emotion in the appropriate ways at the best of times, but the felt reality of that emotion is an incredible and potent presence in my lived experience. It does not take much of a sad story or narrative to have me welling up, whether it be a real experience or a soap opera seems not to matter one little bit.

Stage two of the father’s day adventure involved some peopeling. I am just not too good at peopling. It is one of the areas of being autistic that presents a challenge for me. It was off to my wife’s sister’s house for the festivities of wishing her dad a happy father’s day. Of course this is an important and essential thing to do. Regardless of how tough it is going to be and how everything in me just wants to bail out and curl up in a little ball and hide away from the afternoon adventures.

My extended family is pretty demonstrative, there is a lot of social chit chat and all that kind of good social stuff. You know

the stuff that scares the shit out of me. So it was time to suck it up, it was time to put on the good old passing as neurotypical skills to try to get through the afternoon with minimum fuss.

For me this is not a massive deal but it is a big deal. It is utterly exhausting, and it puts me back into that place of feeling something like a fake, something like the facade can come crashing down at any moment. It’s really quite energy sapping. Lots of those questions that I don’t know how to answer, or if they really want the answer. The hugs that you don’t know how genuine they are, how long to hold on how tight to hold, to go in for a kiss on the cheek or not…

I just never seem to be able to pull out the correct social skills file out of the cabinet for these tasks.

Thankfully it was a success, even though it was exhausting, I made it through with no real issues. No shutdowns or meltdowns which is great and not going down that road in the aftermath either. A quite small dinner with my darling wife

and two of my three girls with quiet conversation and comfortable silences was just the right way to finish of the day.

As I sit and write tonight it is with a sense of quiet satisfaction at the wonder the day brought to me. Utter exhaustion after the social interaction and constant thinking about what to say and do next to avoid making a social faux pas.

As a proud autistic I often think about the fact that I shouldn’t have to worry about passing as a neurotypical, I just shouldn’t have to worry about that, I should always be able to be the person I am. The events of today though is a reminder that even though it wipes me out that sometimes it’s worth it.

Passing: It’s not always worth it but sometimes the reward is pure gold.

Autism what is it anyway…

Autism. A word that conjures up many and varied reactions. For some it’s fear, for some it’s sadness, for some it’s horror and for some it is even pride. Autism a word that is bandied around in so many ways from a diagnosis to an insult. What is it and what does it mean?

I wrote a little quote a few months ago that resonated with quite a few people.

At the end of the day you don’t get to just take it off. There is no on or off switch. It is just a part of who you are. You can’t it, you can’t heal it, you can’t cure it. You can’t repair it you can’t alter it.

In fact it isn’t even an it. It’s a living breathing intrinsically connected part of the autistic person. You can accept the autistic person, include them, maybe make some accommodations, but overall include them as a fully functioning valuable and complete member of society. — As published on June 20 at www.facebook.com/bespectrummed

I wrote this little quote in an attempt to sum up something of what it means to be autistic. As something to capture what it is to live autistically. To counter the idea of autism being something you get, something that has an external cause that can be found and dealt with and taken away, solved, healed. That through some treatment an autistic person can be recovered.

Autism. What isn’t it. Here’s a bit of a list.

Rope worms
Any parasites
A disease of the gut
Caused by vaccines
The result of bad parenting
The result of bad diet

No Autism is none of these things. It just isn’t. 1.25 million people studied has shown that vaccines do not cause or trigger autism. Yet still myths continue about these things that cause supposedly cause it. The thing is though, you don’t have to dig too far to see that those that promote these ideas have a vested interest in selling some dangerous or useless homeopathic treatment to “recover” children from autism.

What autism is then, is what is known as a pervasive developmental difference. Psychiatrists, psychologists and other health professionals like to use the word disorder rather than difference but I don’t concur with this. I am not disordered by neurology I am different. Disorder implies something less or wrong. I am not less I am not wrong, I am different.

Autism is a different way of thinking. A different way of being. A different way of experiencing the world. How this difference is manifested is of infinite variety. There is no one way of being autistic. There are some commonalities though such us heightened sensory experiences or needs, communication differences, which, often result in very literal interpretation, expression and understanding. Language delay in terms of speaking with our mouth parts is a common experience for autistic people also.

Autism itself is not a disease. It just isn’t. It is important though to acknowledge that there are comorbid conditions that at times exist together with autism. For example it is not uncommon for autistic people to also be diagnosed with ADHD. Other common comorbids are anxiety and depression, OCD and ODD. Another very common one is Sensory Processing Disorder. None of these are autism, they are all absolutely separate from it.

To be autistic is to be disabled, not in a physical impairment sense but in a social model sense. It is to be disabled by the social expectations, the social rules, in effect the social system which expects a neurotypial way of being and refuses to accommodate and allow for an autistic way of being.

Autism is a way of difference, in a sense a subversive way of being. Yes subversive because to be successful as an autistic one has to subvert the rules and expectations in order to live a successful life within a neurotypical system.

Autism is Different Not Less.

Autism is A Different kind of Normal

Autism what is it anyway? It’s Beautiful that’s what Autism is.

Identifying Identity

Just about overtime we want to buy something these days we need to identify ourselves. We must prove who we are. Oftentimes we have to supply documents to do this. Years ago we did this with our signature. These days a signature just does not cut it. It’s not safe and secure enough. It’s not the thing that provides us with the pass key to whatever purchase it is we are trying to make, or access we are trying to gain. The minimum required now is a pin number. That little four digit number that goes along with that fantastic little piece of plastic that we can insert or tap to access either our own funds or the funds for which we have prior authorisation to draw upon.

Protecting and securing our identity is clearly important. Establishing our identity is a key thing in living out our lives in the modern world. We identify ourselves through a lot of different ways. Our jobs, our partners, our sexual orientation, our children, our beliefs. It’s a wide and varied group of things and probably none of us would use all of them together at any single time.

My father for some years was an accountant. My grandfather was an Anglican Church minister, in the parlance of the church district he served he was known as a Rector. My wife is a teacher. I am Autistic. Yet there seems to be only one of these statements that cause people to cringe or even to say I see the person first. Yes, you guessed it, it’s the I am Âûtistic statement. For whatever reason it is irksome to some people, it makes some people uncomfortable and uncertain.

My best friend of over twenty years is a gay man. There are very few who would cringe at his choice to identify himself in this way. Does that mean being a gay man is the sum total of his identity, that he is only that and no more. I find it difficult to believe there would be many, or any, who would say that it does. Yet that is the kind of thing that is at times said when people say they are autistic.

Lot’s of justifications are made for rejecting the right of autistic people to identify themselves as autistic rather than as a person with autism. But when it comes down to it they are all inadequate and do not stand up to critique. Let’s have a look at a few.

I see the person first not the disability

This is a fairly commonly cited reason to reject identity first language. However there is a real problem here. It’s almost like the elephant in the room that no one wants to mention. What is really being said here is actually what is not being said. Think about it I see the person and not the disability. It sounds altruistic and positive and at first glance how could you have any issue with it. But, hang on a minute, how would anything be seen other than the person first who is there in one’s presence? The implication here being if I don’t say person with (insert disability here) I can’t see them as a person? There’s a big problem here that reeks of ableism, it reeks of a sense of anything other than the typical is somehow less than a person!

They are more than their disability

Another statement here about identity. I think I have a level of sympathy with this that I don’t so much with other

statements. This is often a statement I hear from parents, they don’t want their child to be boxed in, to be limited to be stopped from achieving all they have the potential of achieving. This makes sense, it is said out of love and hope and dreams for a child. I believe though, that this approach thwarts the disabled person in establishing their identity as who they are, to be part of their community of peers as always in the back of their mind is that little idea that I don’t belong because I am more than my disability.

My disability does not define me

Quite similar to the previous reasoning, with a slight twist. Let’s put in context though, the person that comes to build a house happily identifies themselves as a builder. That’s their work identity, it’s probably what they often say when people ask the ubiquitous social question of “what do you do?” Would anyone for a minute say this is then the whole definitive being of that person? I don’t think so. How silly would it sound if we said a person with building qualifications built this house! No we say, and rightly so, a builder built it. A builder, an accountant, a teacher, etc. None of these completely define any of the people who wear that identity. Yet for some reason there is a cringe factor in saying an autistic person?

I think the key lesson here is to respect the way a person wants to identify and not to instruct them to do so in another way. I identify as autistic. I get upset when I am told I shouldn’t. Equally I am frustrated when people I know identify as a person with ASD for example, but, I respect their choice to identify in that way.

I am offended if someone refers to me as a person with autism. That does not describe me, it’s not something I have but something I am. No, it isn’t everything about me, I am a father, a brother, a son, a friend, and a blogger. I am all of these things yet no single one of them completely defines me yet they are all statements of identity. Just as Autistic is equally a statement of identity. Imagine if you will if I said:

I am a person with fatherism

I am a person with brotherhood

I am a person with sonhood

I am a person with friendism

I am a person with bloggism

It really is just ridiculous. So too is the use of person first language in regard to autism. I don’t have autism I am autistic.

An Exciting Collaboration

A few weeks ago working with another blogger Trish over at Never Less than Everything we wrote a post together titled Full Circle. It was a great success. We both enjoyed the experience immensely and the resultant post was enjoyed by quite a few readers. Personally collaboration is not a strong point, much more of a ferret away on my own and get it done sort of a person. The idea of having to work around other peoples schedules and timelines fills me with trepidation.

This was different. It just worked really well. Since then I have contributed a guest post to Trish’s blog and we have been discussing with some excitement more work together. I had felt this could be good but wasn’t sure how that would take shape. So we chatted over messenger on Facebook and talked about it being a good idea.

Trish came up with a fantastic idea. Well I say that now but when she mentioned it initially I was petrified. Thankfully she has convinced me this is a good idea and it should be a great thing to be a part of. The concept is to do some podcast’s together. Talk about autism/autistic issues.

We have met over Skype and video calls via Facebook and we are excitedly moving forward on this process. We are almost ready to record our first episode. It’s scary and exciting.

We have a name and a list of topics to kick off with. It’s going to be an exciting journey. The concept is not unique, there are people all over the world doing podcasts and vodcasts. What we do have that is maybe a little unique here is a collaboration and ensuing discussion that will be out in the public arena between a proudly autistic man and an autism mom. We will I am sure have alternative positions on issues. I am sure there will be times where the discussion is robust, possibly even tense.

I believe this could be a positive contribution to both the autistic community and the greater autism community. Both of these communities do need to listen to each other and contribute to each other. We often get ourselves tied in knots arguing with each other. It’s not either’s fault it just happens and is furthered by the machinations of groups like Autism Speaks who continue to silence and sideline any autistic voice that attempts to speak to them.

I truly hope when we make this happen that you take the time to give us a view. We plan shortish videos of under 15 minutes with some important topics to kick us off. Just as a teaser we will begin with a discussion about Identity First language and then Functioning Labels.

We have called our venture — Connecting Hemispheres. Trish is from the USA and I am from Australia, so we talk from different hemispheres and we come from different hemispheres of the neurological sense. I think it works.

We are not entirely sure of the final web address to publish our posts but you can keep up with the progress at either our Google Plus page or our Facebook Page.

There’s not much more to tell at this point except to say we are both brimming with excitement and anticipation. Now it is just to get the timezones to align, the technology to behave, the internet connections to be stable and voila the magic can happen.

Good Intentions

No one likes to be told what they are doing is not the best way to go. No one likes it. It’s easy to take offence. It is totally understandable and reasonable to get angry and feel affronted. That kind of thing seems pretty logical, and one should expect that you will receive a less than friendly response when you are the one that is saying it. No surprise to be told where you can take your advice and stick it. The proverbial one finger salute should be the minimum expectation.

Parenting is a challenge, for everyone. Our little wonderful human babies come into our lives and we are overwhelmed with incredible emotions. A dichotomy of pure joy and raw potent responsibility sit together hand in hand. It’s a wonderfully fearful moment of realisation that there is this human person reliant on you for everything. Everything!

Throwing disability into the mix is another layer of difficulty on top of it. It makes everything just that more complex. Our world is one where disability, by default is considered to be a horrible state of affairs. The world places a premium on being able, “normal”, competent and healthy. Life in any other state than this is considered undesirable.

Enter Autism.

Autism is defined as a neurological disorder according to the health professionals. It is described by psychiatrists in their holy grail of books the DSMV. However, the neurodiversity paradigm says, hang on a minute, it’s not a disorder or a disease. It is neurological, absolutely, but not a disorder a difference. A rising tide of adult autistic people are advocating on this front. They are declaring it widely, loudly and with pride that being autistic is different not less and actually we know something about this because we are actually autistic.

This advocacy can take a bunch of different forms. It can be blogging, it can be making videos, lobbying medical organisations, charitable organisation. It can be scouring the internet for information about questionable treatments. Writing letters and giving media interviews. All of these are forms of advocacy.

One form this takes is by being members of parent support groups on social media. Most notably on Facebook. These groups range in makeup from just a couple of hundred people to a great number. One group I am a member of is over 50,000 members. Not sure how many are actually active but it is a very busy group. The topics that come up for discussion is vast and varied. The photos and videos posted a just as varied.

One thing that is a common issue in these groups is when Autistics speak up on issues there is friction. At times their opinions are discarded with an attitude that says you don’t speak for my child, or you are high functioning so you don’t know what it is like for my child who is severe, and many variant responses around those issues.

One thing that happens for me is I often get frustrated and at times angry at these responses. The difficulty of course is that communication difficulty is a thing that is always there for autistic people. It is present in expressive and receptive language. Generally an autistic means what they say and says what they mean. This may sound silly but it’s true. A difficulty is that as an autistic I will say something is wrong and that’s what I mean, the thing is wrong. It’s the thing that is wrong and not the person.

If I say for example that ABA, real ABA is abusive that’s what I mean, I mean ABA, not the parent, not the therapist.

On the other side of the coin, as an autistic person I see ranting about autism, hate expressed about autism, appeals for cures for autism, pseudoscience and dangerous biomedical treatments for autism. I see this and it is hurtful to me as it says an integral part of you is wrong and should be removed. It says I will risk everything even deadly diseases to remove that integral part of you.

On the face of it it would seem to be something of an impasse. That there is nowhere to go on this and maybe we should all stop slinging insults at each other. This is surely true to an extent.

But!

I don’t throw insults, well I certainly don’t intend to and do not say things to hurt parents of autistic children.

So why do I do it may be a question on your mind.

To be clear it is true that if you have met one autistic person you have met one autistic person, indeed every autistic is different just as every human is different. So I don’t pretend to speak for anyone else’s child or anyone else period. I will not ever attempt to put myself in that place. I will however, advocate for them. I will speak the truth and provide information about autism, about being autistic, about bad treatments and myths.

I would love to say I will never get angry and say things in a less than positive way. To make such a promise or claim would be unwise and unrealistic. A promise waiting to be broken.

What I will say is, I am in no doubt that parents love their children and want the best for them. They do not want to abuse them or hurt them. The very fact that these parents exist in these groups is testament to that.

I speak out with passion because I see something of me and my experiences in those children and I want the best for them. I want to save them from the pain that I felt. I want to provide tips where I can to grasp the successes that I had and the ones I missed out on. I want these parents to see that autistic kids do grow up to be autistic adults.

I don’t ever want to offend you. I don’t ever want to hurt you. I want to see your autistic children grow up to be the best autistic adults they can be.

On Tripping over privilege

Recently I published a blog post that had a relevant message on language use, it was tittled Not just a quibble over language. The key take away of this post was very much a relevant point over language use in regard to autism. In the article I made the statement:

So too must we reject the language of disorder when it comes to Âûtism. The vast majority of scientific and psychological thought on the issue of autism, once the conspiracy theorists and the vaccination as the cause, nincompoops are ignored, is in agreement that Âûtism is a neurological difference, not a deficit but a difference. This is a case where we aren’t talking about kindergarten political correctness, but highlighting a real point of difference.

Think for a moment about the difference between “has autism” and “Autistic” for example. If I say I have autism it automatically leads towards thinking of something one has, something that has been caught or something that can be cured. Whereas, the word Âûtistic leans more towards a state of being, an intricately intertwined and inseparable part of the person.

I do not resile from this point at all. It is I believe a relevant and important point. What I do resile from is the means in which I used to move to that point throughout the post. I talked of political correctness and I was wrong in this. I want to clearly state that I made a huge mistake in how I went about this. I was patently and reprehensibly wrong in the way I that I made

the point that we mustn’t quibble over language around autism but in other situations it was merely political correctness. I was wrong.

I referred to a situation that I had encountered that I had dismissed as political correctness. I was out of line and wrong. I had communicated to someone I claimed to care about and respect in ways that communicated hurt and offence. I certainly did not mean that, I felt that I was merely expressing a difference, that was not the case, what I was doing was being blinded to my own privilege. To put it another way I slipped or tripped on my own privilege, that privilege of being in the situation to which I was born into. Clearly that’s not something I can change, but neither can I change that it provides a place of privilege that I am unable to get around or discount. I by default have membership in a particular club. That club precludes me from really understanding what it feels like to be for example gender fluid or to have a sexual orientation other than heterosexual, indeed to understand what it is to be a discriminated against for these things.

I was rightly and roundly criticised by a number of people about this. I have hurt others and experienced hurt in the process. I hope I have learned some things about prejudice and discrimination. I hope I have learned something about identifying and keeping in check my own privilege, and trying my very best not to trip or slip on this privilege again. Oh I am aware that is probably a pipe dream but I do not want to cause pain like this to others again.

I am intensely sorry for allowing my privilege and my blindness to it to cause pain and offence to others. There are many

times in my life where I have been embarrassed and angered at comments and attitudes that have come from others like me who are cis het white males, on this occasion I am embarrassed, angered and disgusted at my own comments.

It would be convenient to reject my membership in this privileged club as I don’t hold attitudes personally that are discriminatory. I am in full support of the wide variety of human experience. My own experience is my own experience and is completely valid, just as any other expression of human experience is too. I can’t reject my membership in that privileged club, but I can be aware of it. I can try to understand it, and I can listen to those that are impacted, discriminated against and hurt by it.

I was wrong. Absolutely wrong to take the tack that I took to try to express my message about language importance around autistic and autism issues and to disregard the importance of that same language use in regard to different experiences of human life.

The Âûtistic community is a diverse community. It is not uncommon to meet LGBTIQ people in this community. Intersectionality is common for autistic people, whether it be sexual orientation, gender identification or something else discrimination is doubled down for many, who experience the discrimination on multiple levels.

Wikipedia defines intersectionality as: “the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.”

I know something about the discrimination of being a disabled person. I know something of what it’s like deal with mental illness. Technically I suppose that is a mild level of intersectionality. There are people who experience this intersectionality on many more levels than this and I must listen to them in order to support their experience and not trip over my own privilege. It is hard enough as it is to negotiate the ableism I experience as an Âûtistic person, when I reflect on intersectionality and some others I know I can’t begin to comprehend what it must be like to add gender, sexual orientation and race for example onto that experience.

Whatever political correctness actually is, whatever it actually means, whether it even really exists is something I can’t really say. What I can say though is that whether it’s autistic issues, sexuality issues, gender issues, family issues, race issues, class issues, faith issues, regardless of any of these it is never just a quibble over language.

Not broken actually

Inner dialogues are powerful. Very powerful. They inform so much about how we go about life. They determine much about how we see ourselves, how we present ourselves, how we talk about ourselves and of course how we feel about ourselves. It can be powerfully positive or devastatingly negative. Much of these dialogues are laid down early in our lives and by those that have had significant impact into our early psychological development and socialisation to the world we

inhabit.

It’s a sad fact that many people, and in particular many who have been deeply hurt and have what are described as mental illness and psychological difficulties, carry a dialogue that persistently tells them they are broken. It is pervasive, destructive, debilitating and persistent. It plays a role in convincing it’s carriers that they are in fact broken, or if they aren’t broken they are wrong, they are less, they are missing, or they are unworthy and incapable of living full and complete lives.

In a sense it can be like looking through a shattered glass. Everything is filtered through that dialogue, every thought, feeling, emotion, motivation is impacted by it. Walking through life like this can be all encompassing, self defeating and just plain bloody hard, and feel plainly impossible.

Far too many people face walks through life like this. And mostly it is for no fault of their own, it is because of who they are or because of how they have been hurt and sometimes a combination of the two.

The dialogue can be like an ever repeating audio or video track playing on a constant loop, repeating phrases over and over again like:

you’ll never be any good
you always get it wrong
you’re hopeless
why are you so useless
you’ll never make it
you can’t do that
you’re too dumb
you’re too weird
pull yourself together
boys don’t cry
you’ve only yourself to blame
you should know better
it’s not an accident it’s sheer carelessness

And so the list goes on, and on, and on. Too many people have heard and continue to hear these horrible audio tracks running through their mind and sub conscience on a constant repeat. Far too many. It’s absolutely horrifying.

I heard everyone of these on my list. I’m an Âûtistic and a survivor of childhood sexual abuse. The audio tracks were well laid down in my inner world and very often and very loudly confirmed by my experience of the outer world. Experiencing school life as a constant looking over your shoulder wondering who would be the next person to hit, trip, push or shove you. What would be the next cutting remark made to or about you just in earshot. Which would be the next person you thought you had managed a friendship with to discover that alas no your quirkiness, weirdness or whatever it is that you can’t work out has struck again and that friend you thought you had has now lined up with all the others that are against

you.

I never knew I was autistic growing up, never heard of it really before Rainman in 1988. Don’t think I had even heard the word before then. But I knew somehow I was different. I knew something was not right. A constant sense of being broken, scared and feeling like it was all very much unfair. It was unfair that i couldn’t make friends like everyone else. It was unfair that, as far as I could tell, I was incredibly ugly. It was unfair that everyone picked on me. It was all very much unfair. And the all encompassing feeling of brokenness was very pervasive.

Broken yet somewhere, somehow there was some sense of hope, some feeling within that, actually no I was not stupid. If I wasn’t stupid then maybe, just maybe I am not broken. I believe that glimmer was what enabled me to keep going, to continue to seek friendships, relationships, success. Some tiny spark of a sense of I’m ok, frankly was what kept me still walking the earth.

The wonder of diagnosis, the enlightening knowledge and realisation of being autistic changed everything. I’ve written before about my diagnosis journey, so I won’t expand on that journey here except to say that acceptance of the reality of who I am has been a process and the resultant acceptance has been the paradigm shift that helps me to make sense of the world and my place in it. Over the years I went through different counselling processes looking to make sense of myself and my experience and within that context the idea of changing the audio tracks has been canvassed but never quite able to be fully grasped and put into practice.

Clarity was only able to come with realisation, acceptance and embracement of my autistic identity. And clarity it really is. The clarity is like a removal of that foggy cracked, broken window that filters everything and gives amplification to those audio files, that in a sense has always proved them true. That was the thing, I could never change them because my experience of the world was always just like what those messages seemed to be saying. Learning that I am autistic and I do, in fact, experience the world in an utterly different way to neurotypical people. Almost like shutters blown open and a wonderful fresh wind blowing through my soul, my spirit, my very being.

Of course it’s no bed of roses. It just makes sense now. I still, of course have communication issues, sensory difficulties and social shortcomings. Of course none of these things have suddenly gone away. Yet, the ability to know and understand that this is not because I am broken but because I am different. As Temple Grandin famously says Different Not Less. I get overwhelmed in loud places with lots of simultaneous conversations not because of being less but because that’s my neurological being.

This revolutionary insight is almost like a pass, or a permission slip, to say no I won’t go into that situation, or, I think this is going to be really hard but I’ll give it a go and it’s no big deal if I have to bail out half way through. The pressure of conforming, of pretending to be normal is suddenly not there. Suddenly I am in a position of powerful knowledge and insight that can choose when are the times it is worth passing myself off as a neurotypical and when are the times I won’t do that and will actually choose to protect myself and keep myself safe.

I’m not broken actually! I’m actually autistic! I am different not less!

A Predictable Course

A stereotype that is pretty constant is that autistic people like routine, predictability and knowing what’s happening now, next and later. It’s one stereotype that is I think reasonably true. Many autistic people hate change, but of course not all, for some it is something they enjoy. Some autistics find it mildly annoying and some of course find it incredibly difficult to deal with to the point of sending them in to meltdown, or shutdown.

I am one that doesn’t like changes to routine and like to know what is going on. I find it quite difficult even at times to make a side trip on the way home to drop into the shops if it is not a planned thing. Depending on my levels of anxiety at the time it has resulted in meltdown for me. Most of the time I can manage it but it causes difficulty for me to cope and keep going

through the rest of the day. It uses up necessary spoons and requires spline reticulation.

One thing in my life that I seem to be able to count on with an almost certainty is the progress of a discussion in autism support groups that are dominated by non autistic parents, siblings and friends of autistic people. It’s one of those things you can almost set your watch by. If it wasn’t a case of serious issues being discussed it would be one of those things that we would probably want to just scroll on past or just let go. That’s the thing though, it’s serious stuff, like whether autism should be cured, like vaccinations causing autism, like the use of questionable therapies. The passage of the discussion is almost like following the GPS unit in the dash of your car.

Let’s take for example a discussion about the supposed link between vaccines and autism. It’s a well publicised myth and touted by celebrities and conspiracy theorists and so called “truthers”. It’s been debunked so many times it is just not funny, it’s really getting old, really old. But, it is a common topic of discussion in autism support groups online. It typically goes, with a leading question posted by a parent asking what people think about vaccines, or perhaps like what I saw recently is a picture of a doll with a whole bunch of vaccination needles stuck in it to apparently represent all the injections that a child will receive by the time they are aged two. Of course the big problem with that image was it is different regime of vaccination in every jurisdiction around the world anyway.

What follows is almost to a script. There is the response of the sad parent who states they don’t say all autism is by vaccination but it is for their child, follow by expressions of sadness for the people by other parents, followed by an actually autistic people stating that autism is not a disease that is caught but a neurological condition that is developmental and from

birth and lifelong. Queue the anti-vaccination brigade, they come in now with a bombarding of links to so called scientific studies proving the link. Often the site url will be naturalnews.com or vactruth.com.

This will be interspersed with comments to the autistic people who have commented that they don’t speak for their child and that they don’t know as they are so high functioning and on the mild end of the spectrum. The unreliability of the pseudo science sites will be highlighted by autistics and some of the parents, this will be followed with outrage from people that you dare to question their beliefs. And so it goes on…

It’s a very similar conversation regardless of the topic. It could be about the need for a cure, it could be about particular biomedical treatments such as chelation or MMS or GcMaf. It could be about wacko treatments like hyperbaric oxygen chambers or quite ridiculous ideas like GFCF diet and even, believe it or not poop transplants. It could be about therapies like ABA, in fact ABA may be a topic almost as common as the vaccination one.

The constant of this is that it’s not a hopeful dialogue. It’s at time a dialogue that brings despair to autistics. It brings despair to autistic allies. It really does. I can’t comment what whether it brings despair to others as I am not in that place to experience it. As an autistic I can say that the despair is about being not listened to, to be sidelined and disregarded as though your lived experience is invalid and not informative to the discussion.

It is hopeless because one would think that those that silence us would be able to see that we are the types of people that their

children will become, that we say what we do because we really do want the best for their children. That many of us have been through these issues first hand and have been harmed by them and do not want their kids to be harmed either.

I know that these parents love their children and really do want the very best for their children. That is simply not in question.

The big question is how do we bring hope to this whole thing. I believe it is by calling for diversity to be the norm, in particular neurodiversity. This involves standing against the idea that Autism is an epidemic, something to be feared and something to be done away with. To stand for autistic voices and them being heard by those in the mainstream.

In a recent LA Times Op-ed Steve Silberman the author of the newly released Neurotribes has called on the largest autism charity Autism Speaks to do a lot more listening. He noted that they have no autistic people on staff or on their board. He called on them to listen to autistic voices. The response of Autism Speaks was to make a call for unity and to use the words of a non-autistic parent to do so. So to be clear a call to listen to autistics is met by a call to unity by a non-autistic parent.

Not really a positive step towards diversity is it?

And therein lies the problem…