It’s A Sensory thing, yes, really.

It’s true, the sensory thing is real. It’s not just a little thing, it’s a massive thing. It is a thing that if it’s not a thing you probably really struggle to get it. If it’s not a thing for you then of course, naturally it’s going to be difficult to get your mind around the concept.

To think that a noisy environment, a particular smell, can leave one debilitated, shutdown, overwhelmed, is perhaps a difficult idea to understand when those things are just a part of life and do not impact your daily life in a way that makes it difficult to

function, to complete the day-to-day tasks required to get through life.

If you know many autistic people you have probably encountered and experience where they have had difficulty with sensory input. It may have been noise, it may have been light, it may have been smell. There are unfathomable number of sensory inputs in the world we inhabit that can be the catalyst for sensory input to negatively impact an autistic person.

Within my family are autistics that struggle with loud volume noises, as young children the noise of a vacuum cleaner, a power saw or a lawn mower for instance would cause such immense pain that the only expression they were able to give was to scream uncontrollably and inconsolably until that sensory input was removed.

In many cases the onlooker to such an even would make an assumption that this was a naughty child, a child having a tantrum because they didn’t get what they wanted to get. Yet nothing could be further from the reality of what is going on.

Sensory overload impacts in a similar way to pain, one must stop it however one can and it leaves one extremely exhausted and in need of rest and recovery afterwards.

Perhaps one of the most difficult things with sensory impacts is it’s impossible tell from where and when it is going to assault you, and additionally it is impossible to tell the level of severity one’s response to it will be.

But, having said that, it really is a thing. Yes, it really is a thing. And not just a small thing, it’s a big thing, a significant thing, an often overlooked thing, an often discounted thing. But, it is a huge thing and it’s about time that it was taken into consideration and sought to be understood with a lot more commitment than has been seen in education and therapeutic circles than I have seen.

What I have seen is discussion of minimization and desensitization. The use of headphones for example to minimise the impact. Alternative is the idea of gradual increased exposure to desensitize the autistic person and somehow make this sensory input no longer an issue.

Whilst there is some merit to minimization in unchangeable environments, the idea of desensitization is sheer ignorance and absolute offence. Would one say to a paraplegic

for example oh we will just desensitize you to the idea of never being able to use your legs again, it’s ok, in time you will just get used to it, no need for a wheelchair, or ramps, or handrails you will just get used to and it will be somehow all good.

What we don’t hear very often at all is stories of employers or educational institutions that are willing to, and carry out, real changes, like the removal of echo chamber classrooms, the provision of quiet spaces for students, the removal of all flourescent lighting or the option of not working in ubiquitous team situations in the workplace. No we don’t hear about these things because this sensory thing, just isn’t taken seriously enough.

Because like it or not, believe it or not, accept it or not, this sensory thing, yes, it really is a thing.

Loud noises are not a huge issue for me, but being in a cafe that has lots of different conversations going at once is really difficult, the effort to filter out and focus on the conversation I am involved in is incredibly difficult, and incredibly exhausting. Being in a shopping centre is also a similar situation. The impact builds gradually, in fact, it really sneaks up on me and suddenly I find myself in a flight or fight situation. Most often it is flight, I need to get myself out of that situation, and I need to do it now. What’s more, I need those with me in such situations to understand and accept that it really is a thing, and when I say I need to get out of it now, I really do mean now. The difference of even five minutes may just be the difference between meltdown/ shutdown or not.

The smell of mint has always been incredibly difficult to me. It took me a long time to realise that this was a real sensory issue for me. Someone sitting next to me eating a

mint, provokes in me an overwhelming desire to vomit. The smell of someone chewing gum in my vicinity strikes fear into my heart and my anxiety levels are immediately elevated. For years I thought it was just me, that I was somehow weird and wrong and I should just get over it, but, you know what, it just isn’t that simple. The very act of walking into the bathroom after someone has brushed their teeth with a mint based toothpaste is in fact an event of trauma. It invokes my vomit response, assaults my senses in such a way that I am unable to think straight, I am unable to function in any way other than to remove myself from the input of that smell.

It’s a sensory thing. Yes, it really is. Whether or not you believe it, whether or not you understand it, and whether or not you choose to accept it, it’s a real, true and absolutely impacting thing.

Yes, it’s a sensory thing, it really is!

For more about sensory and it’s real life impact, see Tricia’s tandem post: Outlasting the Minty Fresh

Playing the game of … Energy … & … Social Skills.

Whatever it is we participate in, whatever it is we do, whatever the activity, physical, social, intellectual, they all involve an energy cost. A withdrawal against the energy account must be made. The corresponding result of course is that the energy account’s

balance is now reduced.

It doesn’t matter how much creative accounting is done the account only has so much in it. Once it is depleted below a sustainable level it is below that level and only one thing will replenish it. Deposits. Interest payments will not occur, online transfers or kited cheques will not do the job. The only deposit that will replenish the balance and balance the energy books is the deposit of rest.

I am quite convinced that all people have different energy balances, indeed, different energy capacities. Some of us seem able to store vast amounts, and some far smaller amounts. It is also true in my humble opinion that the cost of different activities are different for each of us. A run around the block will cost some of us a lot more than it may cost others. The pursuit of writing a blog post may be effortless for some and immense effort for others.

When it comes to social interaction there is some commonality with autistic people in particular, but not exclusively. Those who are considered to be introverts now what this is like, they tend to recharge their energy through solitude. It’s not that they are unable or even unwilling to engage in people activities but that they are energy sapping and recharge is needed.

I believe this is a similar situations for many many autistics. In fact at times we talk of such activities as peopling, and peopling being difficult and very energy sapping.

As there is a cost to any activity for any human person, the social interaction cost for many autistics is huge, absolutely massive. If it is not well-managed, it may lead to meltdown or shutdown events. The energy cost of running to these type events is even more massive and should where possible be avoided.

Meltdowns are no fun for anyone, either those experiencing them or those impacted by them by way of being in the vicinity.

I believe the reason that the social takes such a toll on our energy is that it is normally an area of challenge, and we do rely on accessing learned strategies and behaviours to negotiate these interactions.

I have had a massive few weeks really. I have had a two rushed trips interstate, lost my Grandmother, said goodbye to her, interacted with relatives I have not seen in quite a few years, attended a conference in another state involving a lot of social interaction. This amongst other personal issues in my life which have brought about change in circumstances on a day-to-day level.

My energy levels are extremely depleted. I have been pushing myself, to keep going, to keep up with responsibilities, to keep up with writing. I have been under the impression that I have been managing this quite well. That I have been keeping myself ahead of the oncoming wave of exhaustion and lack of energy.

It is becoming somewhat clear though, that this really is impossible. That as much as I can try to, it is not possible to out spend the energy balance. It’s not like a bank account with an overdraft that can be drawn on.

Well actually, yes, you can overdraw on it, but the interest rate payable is just too big. When you overdraw, you really overdraw, you do so to the point where basic functioning is put at risk, where tiredness and absolute lethargy is a so pervasive it is difficult to even open an hour peopling without total exhaustion re-establishing itself.

The big thing is that it’s the constant cognitive intellectual task of staying on top of what one is supposed to say and do, when to speak and when not to, the constant second guessing of my responses and the flicking through of the mental filing cabinet

in search of the right file for that particular situation.

Of course, there is not correct file in reality, because the situations that the files relate to are not actually this situation, they are another situation, they have some similarities, but they are different, in reality they are far more different from they are similar.

And so not only then is the energy cost already huge but it is actually increased by the use of learned social rules that don’t quite fit the situation, resulting at times in such huge energy deficits that shutdown results or meltdown.

What I am trying to say here I guess is, that all the social skills and social rules, and social training are really not worth too much in the end. They look good on paper and they look like they might even be working in contrived situations, but in the end in the real world, in the world where no social situations are contrived but fluid, changeable, and nuanced.

Let’s forget the social skills and focus on the self-actualisation, forget the social rules and focus on the self-determination, forget the social-strategies and focus on the self-love. Let’s forget all that and focus on teaching autistic children to be proud of who they are, to know they are not sick, disordered or diseased, but neurologically different and to know that that’s cool.

I’m neurologically different, and you know what. I’m cool with that!

150 times yes… A Writer

One hundred and fifty. The number looks big when you type it out like that. Bigger than just the there digits 1, 5, 0. It’s 150 times now I have published a post to this blog. When I say this blog well I mean my blogging career as either a man seeking to understand or a man now knowing, that he is an autistic man. All the posts are here at Never Less than Everything, they didn’t all begin their life here, but they do all exist here.

This little blogging career began over at ntnoway.wordpress.com, made a move to ntnoway.com and has found a new and happy home here at neverlessthan.com. I started back in 2013 I think, looking at the idea of being autistic. It has morphed into something much more. Personal reflections still, for sure, but advocacy based posts too.

I have written about Autistic rights, human rights, abusive treatments, emotions,

empathy, meltdowns, vaccination confusions and even Sesame Street. It is a good thing I think to stop and reflect sometimes. To think about what it is you do and what it is you want to do. Where to from here and all those sorts of questions. A bit like taking a groups of kids on a narrative writing excursion and getting them to ask all those who, where, why, when, what and how questions.

I think that blog post 150 is probably an appropriate point at which to do that. So, here goes, some thoughts and reflections on my fairly modest blogging career.

The very best thing that has happened for myself in this experience has been the self-discovery, self-belief that I can actually write okay. To begin to turn off the tapes of negativity, self-doubt and deprecation about what I am able to do and not able to do. I have experienced with immense joy, even if, much surprise that people enjoy my writing. That I am in fact not a crap writer at all, but, in fact a pretty darn good one actually.

Initially I would post my blog share it around a bit and pretty much hope it wasn’t too shit. Then, people began to follow, comment and like them. Soon people were making comments to me like, gifted writer, talented writer, powerful words and things like that. I recall one friend here in Australia saying, I just love your words. It was and

remains a powerful memory. A memory that urges me to go forward in this writing caper.

Learning to accept these comments is still a work in progress, a bit of a challenge to not jut discount it, but it is a challenge I am gradually winning. Changing the words that run inside my head are a bit of a more difficult challenge, one that I have been taking on with some gusto. Moving from sharing a piece of writing with someone and saying, I hope this is not too shit, towards sharing that same piece and being able to say with some confidence, here have a read of this piece I think it’s a good piece of writing.

This really has not been an easy transition, it is certainly still not a complete transition either. My history as the undiagnosed autistic who was bullied in school, clubs and family has played quite a role in ensuring that the tapes that play about my abilities, my skills and my strengths is one of near total negativity, and so it really is a new and wonderful thing to experience something different to that.

For all readers who have been a part of that I express heartfelt thanks. THANK YOU!

As an autistic boy, I did not have such pronounced motor skill issues that intervention occurred for me, and perhaps that was a sign of the times it was after all forty years ago. Consequentially, I have always been a little clumsy, have a bit of difficulty with some dexterity tasks and things like that. I am also left-handed and the compounding of those motor-skill issues along with left-handedness left me with a lot of cognitive focus and energy going in doing things with my hands that other kids just seemed to be able to do with little or zero effort.

I still to this day can not hold a pencil or pen in the correct fashion. No matter how much I have attempted to correct this over the years of my life, it has not been a possibility. What I have realised is that because of these things that the actual functional, physical, motor tasks of writing words on a page were virtually all consuming when it came to composing written work.

What this meant for me as a school student was that my writing pieces were considered to be hopeless, rubbish and unworthy by my teachers, peers and others. This has contributed significantly to my self-belief that I was not a good writer at all, that I was in fact a pretty shit writer.

Enter the world of typing…

Typing changed everything. It really did. No longer am I focused on holding a pen or

pencil and worrying about how to form the letters and words on the page. My mind is fully engaged in the creative process of composing the piece of writing rather than the physical marks on the page.

And, you know what. I am betting, I am not alone here. I am betting this resonates with some others. But most of all I am betting, there is a lot of parents out there, who may just have some kids in similar predicament, their handwriting is shocking, it seems to take them forever to get five words on the page and then it is illegible. They take to the task as if they have been asked to drink poison.

Handwriting is, in this modern world, largely redundant. If what we are interested in is the thoughts, feelings, creative juices, factual reports and the like, if that’s really the case, let’s give the kid an iPad, a laptop, a smartphone, or a whatever to allow that to happen. Let’s stop, right now, trying to force mastery of a 19th century skill which will be largely unused and allow them to express what is within them with the 21st century tools that they will use virtually everyday of their lives into the future.

Well there you have it, 150 posts, and 150 times, yes. I am a writer, I can now own that statement. Thank you all for your part in this journey and I hope you will stay with me as I continue onwards and upwards to discover the wonders of what can come from within me.

Thank you all and bless you always.

Part of the tribe…

Being part of the tribe is something of an integral to being human. In essence we are all a part of the human tribe. An inherent part of life as a human is that we are

connected to each other. As sheep flock together, humans see each other out. Just as a group of emus streak across a field together so humans seek contact amongst one another.

It seems to be a basic need, a need of community, contact, shared experience. A need to connect physically, emotionally and spiritually with one another. There are so many facets of this need we all share that it occupies philosophers, psychologists, sociologists and other academics for the term of their professional and some of their personal lives.

Whilst we all experience this need we have it at different levels of intensity and importance to daily experience. I wonder if a key factor in this is our sensorial experience of the world. That in some respect our need to engage and be a part of our human tribe is at some level controlled by our experience of the sensory world.

Many of us grow up learning about the five senses, sight, sound, touch, taste and smell. Bu that’s just a part of the story. That’s not all the senses at all. We also have the proprioception sense and the vestibular sense. These senses are highly involved in how we experience our body in the world, in terms of our balance, our experience of movement and perhaps most importantly, for me anyway, our very understanding of our place in relation to how the world impacts upon me. I am sure I could reference better definitions, but that is not the purpose of this post.

Really this is just a little exploration of how that sensory experience might just yield influence on the way I as an autistic man make sense of my place as a part of the human tribe of which I am a part. I offer no real solutions or hard evidence but just a little exploration.

As I watch my daughter walk along a footpath or sidewalk, holding a stick and bouncing it between the metal palings of the fence, receiving feedback through the stick and along her arm I am reminded of how it seems that this is somehow a picture of how I receive feedback from those other humans I interact with. How my very experiences of interaction and how they bounce back to me, how they filter themselves through the implements I use to interact with other humans.

Are you lost here yet? I wouldn’t be surprised, perhaps I am a little myself. But in another sense, it seems to have a ring of truth. A sense of reality and insight.

I think, what I am getting at here is that as autistics, being neurologically different we do indeed experience the social connection, communication and other things differently and through hyper and hypo sensory experiences the connectedness with our human tribe can be influenced, perhaps markedly.

Our difference, often means marked difficulties negotiating the social situations we are in and often result in situations that are less that positive. That moment we are called a weirdo, strange, oddball, or whatever other pejorative it is, may just be feedback to us through those sensory channels. And if it is, perhaps then this influences an internal

regulator for how much a part of this human tribe we actually want to be.

It’s an interesting question I think. Or I could be simply strolling off into absolute lunacy in thinking it may be the case. I don’t actually know if this is a thing, it’s just a thought, but, I would love to hear your thoughts, or experiences about this.

What I do know, for certain, is that over the many times throughout my life that I experienced situations where I failed the “normal” test in social settings I did experience the rejection in more than just an emotional feeling way. There was always in fact a physical sensory pain involved.

On that note, I hand it over to readers to comment with their thoughts on this question. I look forward to reading them.

But I want it all…

I know that phrase not by experience but by hearing it in the context, mostly, of the feminist movement, all seems to encompass, the career, the kids, the family, all of it I guess. It makes sense, I think at heart it’s what many of us want. It’s certainly a different situation totally for men and women, and I in no way seek to make light of

that struggle for equality and the fight against the glass ceilings and the battles for equality in pay, and under the law.

But I want it all….

This idea is what is occurring to me about how advocacy seems to work so often. But I don’t want to compromise, negotiate or settle for less than I am asking for. I want it all.

Well you know what. The stark reality is that you just bloody well can’t have it all.

You just can’t. It just doesn’t work that way. And if it did, it would be an unmitigated disaster. If I got it all then what of the person I am asking some of that all from. Then they don’t get their all, or they have to somehow take that all from someone else, then they don’t get their all, and so the cycle would go.

The truth is we don’t get it all.

In advocacy terms then what do we want. Well of course we want it all, but we can’t have it all. We can’t even have all of what we get in one go either. Change happens as a process. It doesn’t happen all at once and sometimes the pace is, as they say, glacial.

As I wrote in Could you tell me how to get to Sesame Street the other day, the internet is abuzz with the introduction of Julia the Autistic Muppet, or as the media is

calling her the Muppet with Autism. There is joy and concern alike with this occurrence. Some of the issues at hand were eloquently put by Ben a young Aspie In Ben Speaks Up about Sesame Street.

This new muppet introduced to sesame Street just on Wednesday morning USA time has already garnered polarised responses. It is a good example of just how we can’t have it all. It just doesn’t work.

A widely circulated throw away line in the autism and autistic communities is “if you’ve met one autistic person you’ve met one autistic person.” It works as a quick way to highlight that every autistic person is different from every other autistic person. And so therein lies the complexity for a media outlet to take on the challenge of having an autistic character.

Yes it really is complex. Even for a production house as adept and experienced with presenting diversity and difference as normal as Sesame Street and The Muppets. A great legacy I believe left by Jim Henson himself. Let’s have a look for a moment at some of the more standout complexities:

  • Verbal or non verbal
  • Co-morbid conditions or not
  • male or female
  • Autistic or Person with Autism
  • Behaviour issues or not
  • Real muppet or digital only or both

And the list could just go on and on. I believe they have made a pretty good crack at it. They have actually tried to involve as many as they can in the process. Here is a list

of organisations they list as advisors, now there are certainly organisations here that I would rather not be here but it illustrates Sesame Street seeking to do their best in this initiative. They very much are seeking not to be tokenistic.

At the moment there are some polarised responses amongst, I think, the mostly positive middle ground response to Julia the autistic muppet. But, some Autistic Advocates are unhappy, they haven’t done enough to give Julia a voice, and they are not using identity first language. Some parent’s of autistic children are not happy as they have made Julia verbal. Some are unhappy because Julia is not severe enough, some think she needs to be playing with her poop and head banging for it to adequately portray “their autism”, which is not theirs anyway but their child’s.

And there’s the rub, there are so many variables to an autistic person that no character will ever adequately reflect all autistic people. You just can’t have it all.

But, here is a genuine attempt to raise both awareness and acceptance. Acceptance the catch-cry of Autistic Advocates and Awareness the same for many parent groups. Is it perfect, no, of course it isn’t nothing ever is. But, surely it deserves an opportunity to put it’s best foot forward before it’s blasted out of the water.

No you can’t have it all. What you get may not be even all you can have. Surely it is right and proper to accept what is given and offered with genuineness and to continue the conversation?

No I can’t have it all, and yes I want it all. But, I will take what I can get, and keep advocating for more. It’s this process than brings change and hopefully one day,

someday, sooner rather than later that glacial change will come face to face with the reality of gravity and will accelerate towards terminal velocity and the destruction of ignorance, and non-acceptance.

Yes, I want it all and yes I realise I just can’t have it.

Come on Julia, put your best autistic foot forward and teach us, teach us all, that real acceptance and real education can happen.

The Future is…

I lay awake, contemplating and thinking about the future. Strains and strands of thought about the autism community and the autistic community or should I say communities, run through my head, causing wonderment of what the future will be. Will it be bright or bleak. Will it be progress or stagnation.

One strand is reflection and thankfulness for being able to be a part of the Autism CRC Research Academy in Brisbane Australia. A week of talking research facts, information, methods, design etc. But most of all discovering that in reality there are researchers that want to see us actually autistic people as more than just subjects or participants. More than just something interesting to study.

The Autism CRC is a cooperative research group in Australia that is funded by government and partners. They have partners that are universities, peak bodies, government departments and individuals. The partners all must sign on to the Autism CRC’s ethical guidelines and ideals. This is actually a bold step forward. I great opportunity to change the future of Autism Research for the better.

An opportunity to move on from research that is cause and cure focused, research that’s focused on change and compliance, a move on from research that asks how can we intervene to make the autistic to appear, seem, or act more like a neurotypical person.

An opportunity in fact to move to research that asks how can we ensure the best outcomes for quality of life for autistic people. What interventions actually make a difference for their life, rather than the lives of those around them. What is the effect of the interventions on the wellbeing of the autistic person. What is it that we do that improves the opportunities for autistics to be successful in achieving all they dream and desire, whether it be in self advocacy, employment, relationships or whatever. Essentially what are the things we do to support autistics to have the same options and possible outcomes that neurotypicals expect for themselves?

You may wonder why I see this this way? Surely this is just another research group and cure and cause will end up the reality because that’s where it’s at, that’s where the narrative is at, that’s where the huge voice of Autism Speaks and the other big peaks are speaking.

But no.

Autism CRC stands apart. Deliberately and determinedly so.

The cooperative research part, whilst referring in name to the cooperation between research groups and partners is taken far wider by Autism CRC.

Far wider indeed!

The passionately speak of peer research, co-production, co-writing, and co-presenting of research and research finding and outcomes.

What this means, is that they seek to have across all research projects, across the timeline of those projects at each and every stage the involvement of Actually Autistic people. People with lived experience not just participating as participants, but as genuine co-researchers.

This is a massive step forward in my view. And they are putting their money where their mouth is. They have just funded and paid for 14 actually autistics to come to Brisbane for a week and share experiences, learn from each other and become members of the inaugural Autism CRC Research Academy.

This is in my view, Autism Acceptance. It really is. To sit as part of a groups and be truly valued for my lived experience was a singularly unique experience.

This is a game changer.

The more I think about this the more I really excited I become.

Protest and rhetoric is important and as the below video shows can achieve results.

But real change of policies, perceptions and attitude does come from research because it comes from evidence based practice. And the more lived experience can be involved in, inform and partnership with research the more that evidence based practice will move to a model of acceptance.

It is acceptance that drives change. Not awareness. It is acceptance that promotes real outcomes and not awareness.

It’s easy to go and walk somewhere and donate a few bucks, that’s awareness.

It’s much harder indeed, to do the hard yards of changing the way you do things to accept, accommodate and ensure that the lived experience of actually autistic people is

considered and accounted for in the situations in which you have influence.

Yes in this strand of contemplation I think that the future is actually bright. Brighter than perhaps it has been since I don’t know when.

I am hanging on for this ride, it just might be a bit of a wild one…

Could you tell me how to get, how to get to Sesame Street

The buzz of the day in the world of autism, at least in the part of it that I inhabit, is Sesame Street. Yes. Sesame Street, the place of Big Bird, Cookie Monster, the adorable Elmo, and one of my all time favourites Snuffleuffagus.

Yes, that television program that feels, to me at least, to have always been there, morning and afternoon that song played and it was time for the letters and numbers of the day. It’s truly been perhaps the biggest success story of television.

The buzz is all centred around the newest member of the Sesame Street family, a new Muppet, Julia, who happens to be Autistic. Yes that’s right an Autistic Sesame Street Muppet. My newsfeed on Facebook is full of shares of this news, with comments ranging from wonderful, interesting, what on earth, and here we go again. You can

Source www.sesamestreet.org

read about it on People here.

On the surface it would be easy to go all out about how wonderful this is or indeed to consider it mere tokenism. The truth is we won’t know until time has passed if this is a good thing or not.

I must admit I have not closely watched an episode of the show for a long time. But my gut response to this is that they will do a good job of making this a meaningful and helpful process in bringing acceptance to autistic people and autism as a neurological difference rather than a devastation, epidemic or catastrophe.

My thoughts here are, I admit, based on not much more than the recollections of what I saw each morning and afternoon that Sesame Street beamed its way into my lounge room. What I saw was a diverse range of people. Adults and kids of a range of racial and cultural backgrounds, men and women, adults and kids, all valued and given a voice. Not sidelined, silenced, or made to feel anything less than completely human.

This program I think, has always promoted diversity and acceptance of difference. I do

not see a reason why autism and autistics should be of any difference.

Of course we will have to wait and see, the jury will be out of course until we see what happens, how Julia is integrated in the show, how her voice is respected, valued and allowed to flourish. It is my fervent hope that the portrayal of Julia is not influenced by the likes of Autism Speaks and the Anti-Vaccination conspiracy theory nut jobs. I hope that it does not succumb to the voice of the cure culture that would have us believe autism is a disorder and disease that must be, at all costs, cured and eradicated.

Of course I have reservations and concerns. Concerns that this will be another experience where the #ActuallyAutistic voices are not valued, listened to and heeded. Where the language used allows the narrative of negativity to thrive and so perpetuate the catastrophe, epidemic and whichever other emotive adjective of the day is used to thrive.

So far I see a genuine attempt to highlight that being autistic is a life of difference, and not a life of less. I have seen a genuine desire here to integrate this difference into the Sesame Street landscape as simply an alternative way of being human. Granted, I would have like to see Identity First language embrace rather than the ubiquitous

Source:
http://www.people.com

Person First language, however this does not mean that good things will not be done.

A question I do have, something I am not clear about is whether Julia will be a feature only in the digital content of Sesame Street or in also in the regular television production. In the people.com article it is mentioned that Julia is digitally created, and deliberately so. I do believe for this to be a truly genuine embrace of Autism and Autistics as difference and diversity then Julia needs to be a feature across the Sesame Street landscape and not only on the online landscape.

I am interested and somewhat positive about the future of this. We have seen that education is a pivotal part of changing societal attitudes. If it were not for education about alternative ways of being then we may still call homosexuality a disorder and certainly marriage equality would not be something that has come a reality in many places around the world.

I wonder what others thoughts about this are. Please comment and share.

#DifferentNotLess

Different Not Less!

It’s something of a catch cry in the autistic communities. Even in some cases in the wider autism communities. Have a browse of social media in the subject of autism and it is one of the more prominent phrases bandied about.

I totally uphold it. It’s a hashtag. A catch-cry, a slogan, a reality.

Not all realities are easily accepted in the broader community.

Just look at the whole vaccination and autism link rubbish. One study shown fraudulent and false. Never replicated by other researchers. A myriad of other studies showing that the fraudulent results are in fact false. Millions of research participants debunking the rubbish, systematic meta-analysis of studies and still the myth is a perpetuated.

Of course if this was just within the conspiracy theorist channels it would probably not be too concerning. But we have prominent celebrities like Jim Cary and Robert Kennedy Jr sprucing these untruths. For goodness sake we have aspiring US presidential candidates declaring it.

Realities are not always accepted for what they are.

Yes the fact that I and every other autistic person really is Different Not Less is true. Our neurology does not make us less. In fact we are never less than everything we were created to be.

Of course, it’s not just autistics, it’s not even just those with disabilities. This reality in fact, applies to all. Yes, everyone. Every single person. No one is less. No one.

Neurology, ability, sexual orientation, gender assignment, gender identity, race, religion or intelligence or any other categorisation we can come up with for that matter, does not in any way, ever, denote lessness, or moreness for that matter.

As Orwell suggested in Animal Farm all those years ago we are all equal. They pigs didn’t quite get it right in that story but the nuggets of truth was there. We are all equal.

This reality needs to be accepted. It needs broad acceptance in the community. That difference is not wrong, is not sick, is not disordered. Difference is just that different.

Is black better than white, red better than blue, orange better than yellow? No they just are.

Is American better than Mexican? No of course not. Is Gay better than Straight, is Cis better than trans, of course not.

Take a moment to listen to this pertinent original song by the Autistic Advocate Fiona O’Leary

It is a sad thing that the western culture I inhabit is so bad at accepting difference. In my home country of Australia, over the last decade or two in particular fear of difference has been used to political advantage, so effectively, we have become the scorn of the United Nations Human Rights Commission.

Different Not Less. It’s more, so much more, than just a catch-cry or a slogan. It’s a tenet of faith. An article of ideology, a statement of intent, an expression of attitude, and of course a fundamental truth.

Different Not Less, I’ll just keep saying it, because it is a truth. The strength of it can be seen when we look how far some minorities have come in achieving acceptance. Of course there is always more that can be done, more complete acceptance.

When it comes to Autism/Autistic Acceptance, we are at the beginning. We still see abuse of autistics on a far too large-scale, in a similar way to what we say with aversion and change therapies LGBTIQ people were subjected to. We have massive corporation type charities with a vested interest in keeping the narrative one of pathology, deficit and epidemic.

It is up to us. It is up to those that truly accept to change the narrative. To take the momentum from the negative and turn it to positive. To turn away from Epidemic, Catastrophe to Different Not Less.

Yes. I am Different Not Less, and so are you.

The Communities, they must find peace…

But you’re so high functioning….

But you’re not like my child because they are on the extreme end of the spectrum…

But you only have aspergers….

But you don’t look autistic….

But you are so verbal….

Oh I’m sorry that must be hard for you….

You don’t speak for my child….

You just need to learn social skills…

But ABA changed my life…

But I’m an Aspie so those on the lower functioning autistics they must want a cure….

I don’t think you should say autistic I always see the person first not the diagnosis..

But I am not disabled…

Bit I am not disordered…

Bit I am disabled…

But I am disordered….

I have heard or read all of the above. They are common phrases, they are expressed at times from all

variants of the autism and autistic communities. They display that we are not at peace. We are at loggerheads, fighting against one another almost as if one community is always seeking supremacy over the others.

It’s not helpful. It’s dest
ructive. It’s never going to be helpful. It’s only ever going to divide us and not unite us.

Maybe we can never be united. Maybe that is a fact that needs to be faced. I am not sure, but maybe. But…

Surely we can be at peace.

Autism parents want their experience taken seriously as is right and proper.
Autistics want the same.

It is this that gives rise to the cries, the slogans the hash tags like Nothing About us Without Us. Different Not Less. Actually Autistic. I Don’t Need A Cure. No Cure Required. Autistic And Proud. Proud Autistic Living.

What to do? How to move forward?

I regularly see the autism and autistic communities implode and try to tear themselves and each other. It doesn’t help. It hurts. And worse it makes it easier for negative narratives to move forward and further alienate us.

It gives rise to the language of epidemic and catastrophe from the likes of Autism Speaks.

It gives rise to turning a blind eye to the horrid treatment of autistic people in places like the Judge Rotenburg Centre.

It gives rise to allowing a platform for idiots like Donald Trump, Jim Carey, Robert Kennedy Jr and the like to proclaim utter rubbish about vaccinations.

It fosters the freedom to thrive for abusive therapies like MMS, GcMaf, Chelation and others to be marketed like snake oil and autistics children and adults to be damaged and abused.
I don’t know the answer, I know part of the answer and that is listening to each other and giving respect to each other. But it’s not the whole answer it is just a part of it.

I wonder what you can add, I wonder if you have any thoughts. Please like comment and share your thoughts.