30 Days of Autism acceptance and A is for Autism not Armageddon….

It’s been a while since posting. I am studying an online course which I have neglected at times and am now on a short timeline to get finished before the deadline. But today is April 1st. April fools day in some circles. But in autism circles, it is a key time. It marks the eve of the so-called world autism day. The day itself is under the auspices of the UN. Unfortunately, though, it has been somewhat co-opted or taken over by the big business that masquerades as a charity the US corporation Autism Speaks.

Yes, you read correctly. I said a corporation. Autism Speaks should be understood as such. If it looks like a corporation, acts like a corporation spends like a corporation and markets like a corporation; chances are that’s exactly what it is.

Make no mistake Autism Speaks is a for-profit entity that has multimillion dollar turnover and spends a minuscule proportion of those funds on actual support for actual autistics. They spend about 4% of their budget on this support. For a fuller discussion on what is wrong with Autism Speaks watch this video:

So it’s April, a month that has been very much embraced by the autism and autistic communities as autism month. April two, tomorrow, is often called autism awareness day, I refuse to label it as such. It is acceptance not awareness that is required and needed. It is a world autism acceptance day that is needed not just awareness.

Several months ago I made a decision to blog each day in April. Each day will be a different letter. That covers 26 days. I guess it gives me a little leeway to miss a day or two or else a few extra topics. My 30 days of autism blogging. 30 days of April, I hope 30 days of purposeful and positive messages about autism, acceptance, being autistic, neurodiversity, being neurodivergent and so forth.

So it begins. A is for Autism not for Armageddon.

A is for autism. A neurological difference present from birth. Genetic in nature. Autism is not a coming armageddon. Autism has always been with us. It’s not something new and it’s not something altogether hateworthy.

Officially in the psychiatric manuals and so forth it is described as Autism Spectrum Disorder. I don’t like that it is classified as a disorder, but I remind myself that this is an official description for diagnostic and medical purposes. I still don’t like it, but in reality, there is not really much I can do about it. Other than to continue to celebrate and remind myself and those around me that I am not broken I am different.

At times just hearing or reading those three little letters have made me cringe and sparked anger and frustration in me. Now not so much. I have made my own little mind shift. I do this little quickstep in my head that reframes ASD from Autism Spectrum Disorder and transforms it to Autistic Spectrum Difference, and, in that little quickstep, a world of difference takes place for me. It moves me out of a sense of mental illness to be “aware” of and into a paradigm of neurodiversity and difference that should be ‘accepted’ and celebrated.

It’s not an armageddon, it’s not in any way like a giant meteor plunging to earth like a global killer in the film Armageddon. It’s not a comet-like in Deep Impact either. An armageddon is something that is set to wipe out the earth we live on, or, at least, human existence as we know it.

Autism is not that. It never has been. It never will be.

Yet we have regular occurrences of Autism being referred to in similar terms, such as epidemic and catastrophe. Yet, autism doesn’t kill anyone, it doesn’t even make one terminally ill. Yet millions upon millions of dollars are pledged in dedication to eradicating it.

It really doesn’t make sense.

If we were to look at things in our society that perhaps should be labelled as an epidemic or a coming armageddon there are many others that qualify for better. Things like a Donald Trump presidency for instance. (well it is April 1st). But seriously, wouldn’t the various cancers be more accurately described as a coming armageddon? Cancer is far more likely to kill you than autism is!

A is for Autistic…

Many will say one should not refer to oneself or others as autistic because autism doesn’t define. But here’s the thing. Actually, it’s not an insult. It’s a badge of pride.

Yes, pride. I am indeed proud to call myself autistic. Just as I am proud to call myself human, just as I am proud to call myself left-handed, a parent.

None of those things define me totally either. But you know what they go some way to define me. They all have a part in providing a definition of who the person Rochelle Johnson Âû is.

A is for autistic. A positive, different and wonderful way of being.

A is for Âû….

Âû is a suffix to my name. It is an identifier. But it is more than that. Au the first two letters of autistic are also the chemical designation for the periodic element Gold. Autistics around the world have co-opted that idea. We are precious and integral to our society. We are elemental to it.

To really understand Âû go and check out the Autistic Union page:

Autistic Union Facebook Page

The Ten Points of Âû

I wear the Âû appended to my name with pride. It connects me tangibly with my tribe. My autistic tribe, that tribe I had longed for for so many years. That tribe that I can be a part of without feeling as though I am irrevocably different.

A is for Acceptance ….

Yes, acceptance. Acceptance is fundamentally an action that acknowledges that autism is difference, not wrongness. It fundamentally acknowledges that that is OK and doesn’t need to be changed. Acceptance is to be strived for, fought for, struggled for.

Awareness is not nothing, but in itself, it doesn’t seem to be anything other than having a little bit of information about something. It does not encompass the action of valuing the autistic person.

A is for Acceptance.

In real estate they often say Position. Position. Position.

In autism it’s Acceptance. Acceptance. Acceptance.

Yes

A is for Acceptance.

Just facts on vax.

Just the facts on vax and Autism — No Relationship. Period. Try Acceptance instead.

Well, just the facts on vax and how it relates to autism!

It doesn’t.

It just doesn’t. It has no connection. Zero. Nil. Nada. Zilch.

Not much more to say really on that point, in terms of the facts. Still it seems so many are ready to blame autism on vaccines even in the face of tomes of evidence to the contrary.

Why so?

I don’t have the actual facts on that. I have an inkling, though. I have an idea a theory if you will.

My theory is that as humans we fear the unknown. We fear what we don’t know and we worry about it coming to hurt us, to control us, to take away what we have.

So, we have a tendency then to grasp at any explanation, any possible reasoning to explain how this terrible unknown thing happened, what caused it.

It seems vaccines are the victim of that.

So many times I hear the story that goes along the lines of — my child was fine, developing normally and then the vaccine and I brought home a different child.

The story goes like that, but the scientific research says something completely different. The research says overwhelmingly there is no link between autism and vaccines whether as a trigger or as a cause. It just doesn’t exist.

There is no question that vaccine injury is a real thing. A very rare thing but a real thing nevertheless.

Yes, it’s a real thing. But what it is not is autism.

I think there is a reason we hear that story so often. I believe that it is due to a similarity in the timing of when vaccines are administered and when the signs of autism in children commonly become observable.

And no I don’t think that means that parents didn’t know their kids, didn’t observe them properly. No, I don’t think that at all.

What I do think is that we want to see our kids develop according to the typical timelines. As humans, we are conditioned to fear the different and so we have a tendency, I think, to not see things that are there because we don’t want to see them. We have a tendency to be hopeful that it will work out and what we have an inkling of is just our imagination.

It’s not that we are ignorant, it’s not that we don’t know our own kids. It’s that we just hope for the best for them and so often we imagine that best to be a so-called normality. A boy or girl next door idea of a smart and sporty successful etc child.

And of course, there is nothing wrong with that at all. What parent doesn’t want that?

But here’s the thing. If we refuse to let go of that and remain committed to not accepting that our child is different neurologically

and spend time fighting it, looking for the reason, the cause and possibly the cure, if we do this we send a very particular message to our children.

That message is that you are broken, you are abnormal, there is something wrong with you and I wish you would go away and my real child would emerge from the depths.

Of course, we don’t intend to send that message, no not at all. But nevertheless that message is sent, and it is received.

That message is incredibly damaging to the autistic child. It is like a loop tape playing that can’t be stopped, playing on a tape deck that has no pause or stop button.

In the end, it’s autism, it’s neurology, it’s different. It’s not less, it’s different.

Yes, it’s not what you expected but it’s not worse, it’s different.

Please stop searching for the cause, the cure, the reason. Please start seeking acceptance and celebration and success.

I am autistic. I am different I am not less.

If you have a child diagnosed autistic they too are different not less.

Acceptance is what I seek, not just awareness, not just tolerance. Acceptance. Yes, acceptance.

Because awareness and tolerance don’t say to me you are just another human person and you are entitled to the same expectations of life outcomes as me. Acceptance does.

Acceptance. Yes, Acceptance.

Just the facts on vax- autism has nothing to do with vaccines.

Just the facts on autism — acceptance is the light that guides us on the path to celebration and inclusion.

Special Needs… Special? or Unique?

Everyone has needs. Back in the 70’s and 80’s when I went to school we were taught there were basic needs that everybody has. Food, Shelter and clothing were the top three. I confess, I can’t recall the other two, I do recall thought that water was encompassed in the food need. In an effort to recall the five I just googled it. Wikipedia has an article on basic needs and it lists some different lists dependent on country. However, it is interesting to see that education and healthcare are also considered basic needs also.

If these are basic needs then the idea of special needs must apply to everyone. Any person claiming to need beyond this list must be calling for “special needs”. It does seem a little far fetched, but, if we consider against the needs that are often labelled as “special needs” we must take pause and think.

Are these “special” needs I am seeking out here so special after all or just needs, like everyone else’s needs.

Is it so special to want every child to have the same access to educational and healthcare services?

Is it so special to have an expectation that a teacher will take the time to consider the unique needs of each of the students they are asked to teach? Isn’t that just part of the job description.

In public discourse, the statement “special needs” is a prevalent term. It is even applied as a moniker of sorts to some parents by themselves. Of course, the literal thinking autistic in me wonders when I see someone refer to themselves as a special needs mum, are they in some way asking for something special for themselves, are their needs special or are they referring to their child?

Perhaps the idea of unique needs is more accurate. I have a daughter with unique needs. She has a very rare condition of her brain, her needs are unique due to that and the other conditions she has. But are they in any way more special than my other children’s needs?

Perhaps the idea that every single person alive has their very own unique needs.

Perhaps the thing for me is that the “special” tag has a connotation of inferior. It has a connotation of intellectually inferior, it has a connotation of inferior in general and sub-normal. Whatever normal actually is anyway.

The incredibly sobering and extremely scary thing with that line of thought is that it is not a very long leap to go from inferior or sub-normal to a concept of sub-human.

In the case of autistic people, we have seen the idea of sub-human before. And not just from the general public but from the autism professional class. Ivaar Lovaas, the creator of the abusive therapy known as Applied Behaviour Analysis, referred to autistics as human-like shells that could be filled up.

One clinician describes autism as a terminal illness and autistic children as dead souls. Others consider them “shells” or “husks.” The most unnerving revelation occurs when Silberman profiles Ivar Lovaas, the developer of a common therapy known as Applied Behavior Analysis. In a 1974 interview, Lovaas says that autistic children “are not people in the psychological sense.” He combats an autistic child’s self-injurious behavior by striking her, and his therapy rooms deliver corrective shocks through gridded floors. Spoons of sherbet serve as rewards — a method that seems less sweet when Lovaas reports that “it is a pleasure to work with a child who is on mild food deprivation.”

http://www.theatlantic.com/health/archive/2015/08/steve-silberman-neurotribes-autism/400346/

The jump from special needs to subhuman is not very far at all. It is an incredible and scary jump indeed. A jump that due to the narrative and rhetoric of “special needs” that instead of meaning individual and unique is associated with less, inferior and aberrant.

That jump has been made by many parents of autistics too. They have subscribed to the terrible lie that autistic children are vaccine damaged, or infested by rope worms. In the later case, they have fallen victim to a charlatan cult leader Jim Humble and possibly also to another charlatan cult leader colleague Kerri Rivera.

That jump results in the use of absolutely horrid treatments inflicted on autistic children. It results in Bleach being fed to children by mouth and inflicted on them via anal enemas. It results in children being placed on restrictive diets with no medical basis. It results in children being subjected to unwarranted faecal transplants, to dangerous chelation therapies and to being placed into hyperbaric oxygen chambers.

So let’s stop calling everything special needs and just acknowledge that we are all different and we all have different needs.

Our needs are not special they just needs. Our needs. None of us is a special snowflake. There is actually no such thing as special snowflake syndrome, because we are all just humans, and we all just have needs.

None of us is any more special than any other. Special needs. No, just needs.

They’re my needs, they’re your needs. They are unique, yes, because we are all unique. They just aren’t special. And calling them such has a risk of sending us down a slippery slope towards considering some just a bit less human than others. And when that happens the consequences are horrid.

Perplexing happenings

It’s a hard thing to work out. It’s perplexing. I have to confess I can’t really fathom how it has occurred. It’s a case of what I believe is an injustice. It really is, I think. I scroll through my newsfeed and I see many different things, some are cute, some are funny, some are sad, some are joyous and some are downright anger inducing and disgusting.

One thing that is bound to enrage me is the conspiracy theories about vaccines and autism. It’s perplexing to me that this is still being sprouted. We have celebrities claiming it, we have hopeful politicians claiming it, we have the descendants of US Presidents claiming it. Yet, in all honesty, it must be one of the most studied and most debunked claims of modern science. For example here’s a list of a hundred odd studies that do so.

This all started, or, at least, became a public thing in the work of Andrew Wakefield. If you know nothing about him I wrote a little piece about him last year. A flawed study. A fraudulent study. A retracted study. A study that resulted in the good doctor losing his medical license.

But still the illogical claims continue. Parents make memes with ludicrous claims about how their child got “the autisms” immediately after they had an injection. I call bullshit to this. I really do. What we know about autism is that the origins are almost assuredly genetic, they are not an issue of parasites, they are not an issue of pathogens, they are not due to vaccination.

Here is an infographic that shows some history of this whole issue. It shows where Wakefield made his assertions and then it shows all the work gone into discovering the truth. The truth that there is not in any way a connection between autism and vaccines.

None. Zilch. Nada. Zero.

Yet it is a claim that we here from presidential candidates. Pontificate on by former playboy stars around the talk shows circuit.

The question is why.

Let me be clear, though. I am not pretending that vaccines can’t cause a bad reaction. Even a fatal reaction. The reality of the vaccine injury court is a testament to this fact.

But. The court exists to make rulings about real vaccine damage. That vaccine damage is never autism.

From my reading on this, it seems to be that this damage is largely an encephalitis reaction. Encephalitis is not autism. No matter how you spin it it just isn’t.

The truth is that of the millions of vaccinations given the adverse reactions are almost negligible. That’s not to say that they are to be ignored. It is not to say they are ignorable.

And they aren’t ignored. That’s why there is a vaccine court. That’s why there is a medical exemption criterion.

What we have seen since vaccines were introduced en masse is near eradication of diseases like smallpox, measles, whooping cough and others.

Also, what we are currently seeing due to the fear mongering of the anti-vaccination brigade are outbreaks of measles and other of these diseases.

And why?

Because apparently having a different neurotype is a far worse consequence than death.

Because parents are more afraid of autism than of their children dying.

I think it’s safe to say that Houston we have a problem!

Let’s be clear. Being autistic has its challenges. It does, there is no sugar coating that question. There are sensory issues, communication issues and socialisation issues amongst other things.

But, these are not life threatening issues. They are challenges to be worked with.

And a word to all you who are not neurodivergent. to you allistic and neurotypical people, it is just as hard for us autistics to deal with you as it is for you to deal with us.

Perhaps more so.

More so not because at an individual level it is tougher, but because you guys are the majority, we deal with you en masse, every day, every week every year. That’s our reality of making our way in the world.

But it’s not a competition. Just an observation.

Many of us who are autistic adults, due to the simple history of understanding about autism have lived largely undiagnosed lives. We have had histories where we were bullied, silenced, ignored and made to feel wrong, broken and in a sense aliens in the world we walked.

In large part, this was done to us by others. But, speaking for myself, in just as large part this was done to us by ourselves.

Some of us have spent lifetimes trying to fake it till we made it. And for most of us, that made it bit just never happened. The actual making it remained elusive. Faking it till we made it just wasn’t good enough to cut it as a neurodivergent person in a neurotypical dominated world.

Some of us did grow up with a diagnosis. And for many autistics in this situation, this meant a lifetime of therapy to change them. To make them indistinguishable from their peers. To appear for all intents and purposes not autistic. Many autistics who underwent this developed significant mental health issues including Post Traumatic Stress Disorder (PTSD).

It really is perplexing. The most cogent question I have to ask is what’s so scary, what’s so terrible and what’s so inherently bad that being autistic can be considered worse than death. I am utterly perplexed by this.

A whole industry of therapy exists to cure us of our autism. Millions of dollars are spent worldwide in search of definitive answers to the cause and development of a cure.

But the elephant in the room here. Yes, there is an elephant in the room and that elephant is that none of the people who are conducting all this have actually found out from autistics what it’s like to be autistic if autistics want to be changed and if autistics would even take a cure if it was available.

It’s the parents and the professionals who seem to be controlling the agenda. Controlling a narrative that says autism is bad, devastating and to be eradicated. At times, the message is even autism is aggression, violence and terror.

As an adult autistic with autistic children, I for one am really over reading about the latest so-called miracle cure or treatment for the autismohoribilis. I am certainly sick and tired of reading about the latest school or day care centre to lock up, isolate and cage an autistic child. I am sick of reading about teachers who deliberately torment and effectively torture autistic children. Yes, I am over it. I am sick of it.

I blame the narrative. I blame the rhetoric. I blame the big organisations. I blame the media that give column space and airtime to all the negative stories.

Science has learned a lot about autism. Here’s a video from a great ted talk from a geneticist. It’s worth watching.

I hazard a guess, though. We could no a lot more about the realities of autism. If we as a society listened to the autistics. If we asked what is it like to live as an autism. How does it feel to be in a room with multiple conversations going? Why is it that you like to flap or why do you like to rock.

The age of Autism Speaks needs to end and the new age of Autistics Speak needs to arise.

When disordered is really just difference…

Ever heard that saying Life is a journey? I would be surprised if not. It’s said very regularly in many contexts. I believe the reason is that it has a truth to it. Yes, life is a journey, as clichéd as it may sound it is true. It certainly has been for myself, I have journeyed through many different life lessons, lessons steeped in difficulties, lessons steeped in joy, and lessons steeped in trauma.

There have also been lessons steeped in new and fresh understandings. Mostly, these fresh and new understandings have not been easily discovered but have involved lot’s of soul searching and thought and discussions. They have invariably involved periods of hurting others with my words and being hurt by others words. One of those aspects has been that journey from autism as a disorder to autistic as a difference. It is a genuine journey, one that I have embraced. I hard fought and won a journey to a celebrated identity.

In recent days, I have thought about the propensity of autism being labeled as a disorder. I have difficulty with this concept. To me, it is not a disorder but difference. There are many differing ideas about this across ranges of people, autistics, professionals, parents, educators etc. A very common response to objecting to it being called a disorder I hear is the assertion that it is that way in the DSM documentation, so it must be.

But things are not that simple. Things are really more complex and nuanced than that. There are many things that have in the past been labelled as a disorder or illness only to discover that it’s actually just a different expression of what it means to be human.

Humanity is an exceedingly complex thing. To be human is so complex, we are a product of our genetics, our histories, our culture, our capacities for thought amongst other things.

I can’t pretend for a second that I understand everything. I can’t pretend for a second that my life has been an easy journey, it hasn’t. However, I also can’t pretend for a second that I don’t have privilege and operate in a sense from that privileged paradigm. It is important that I acknowledge that privilege before attempting to go further.

I’m white. I’m Male. I’m cismale. I’m heterosexual. I come from a long Christian heritage. These are all aspects of my privilege that come into play. And in light of that, I seek to check that privilege, to understand that what I write is influenced by that privilege and that how I think and understand is influenced by that privilege.

I’m 46 years old. I was born into what looked for all intents and purposes to be a good middle-class Christian family. My grandparents were missionaries and my mother was born on an indigenous mission in the top end of Australia. My grandfather later went on to become a Christian Minister.

I went to school in an environment where in general the idea of equality for LGBTIQ people was not really even on the agenda. Horrible and despicable things were said about LGBTIQ people. In my lack of knowledge and understanding, I was a part of the problem. I partook in some of those conversations too.

My good evangelical Christian heritage did not help me in this regard. From the pulpit, these orientations were commonly proclaimed an aberration to acceptable human expression.

At the age of 19, a close friend came out. Suddenly the aberration of what I believed was tested. Suddenly I was faced with the reality of a very close friend bearing all before me juxtaposed to what I thought based on what I had been told. I entered what could be termed a crisis of conscience.

I vividly recall where I was on that night. I vividly recall the crises of conscience I experienced in that moment. It was painful, uncomfortable and it was a pivotal moment. In that moment, I had to make a choice. I had to make a choice for humanity or the status quo. I chose humanity and began a long journey that took me from discrimination through tolerance to acceptance and on to celebration. It hasn’t been easy but it has been incredible, rewarding and I am much the better person for it.

You may wonder what that story has to do with autism and being autistic. You may wonder why I shared that with you, for what purpose.

I shared it because this journey to acceptance and celebration in terms of LGBTIQ human people has many parallels to the journey that needs to occur with autism and autistics.

Yes, that’s right. That journey is similar.

When I was born in 1970, homosexuality was a disorder listed in the DSM. It was officially removed during the 1970’s in either an update to the DSMII or in the DSMIII. As I grew up the talk, the rhetoric and the reality of homosexuality grew and changed. Laws were changed, rights were granted.

But in the meantime, many were hurt. Shamefully, I am sure I hurt some too in my ignorance. Last year we saw the USA landmark supreme court decision granting marriage equality.

Currently, autism is listed in the DSM as a disorder. Autistic pride is on the rise. We light it up Gold in the face of the pathology focussed light it up blue. We embrace the neurodiversity paradigm, in the face of a media environment that continues with a negative narrative of less not different.

We boldly claim no cure is required. We advocate for acceptance not cure. We speak out against harmful treatments.

In these actions, I see parallels between the actions and advocacy taken by those in the LGBTIQ movements.

It is not the same of course. The issues are different, of course. Yet there are similarities and shared experiences.

I have friends that were subjected to aversion therapies and change therapy programs to “Cure” them from their sexual orientation.

Foundational practices of ABA therapies draw from these processes also, aversions are used and encouraged.

Many non-heterosexuals have developed mental health issues such as severe anxiety, depression and PTSD. Just as many from the autistic community who have been subjected to ABA and similar therapies have developed these conditions also.

As the gay rights movements have affected change so too must the autistic rights movements.

There is already a vast number of autistics who have been subjected to hurtful, dangerous and at times abusive treatments to cure them of their so-called disorder.

This has to stop.

I long for the day when we as the autistic communities are able to look back and see the concept of autism as a disorder behind us and celebrate the embracing of the neurodiversity paradigm. A new dawn if you like where difference is not just tolerated but accepted and celebrated. When parents of autistics don’t have to fight for their children to be accommodated and have their sensory needs taken into account.

Until then I for one will continue to proclaim. I am not sick, I am not diseased and I am not disordered. I am autistic. I am different not less. I long for that day to come but I will not be silent.

Is it inspiration or is it just feeling good about ableism….

**** Trigger Warning: Discussion of ableism and inspiration porn…

In the last year, I have come across a term I hadn’t really been aware of in the past. The term is Inspo-porn or Inspiration porn. There are whole websites dedicated to this stuff. A prime example is The Mighty, I won’t link to it as I don’t want to give the site any extra clicks.

I am thankful to a number of people for assisting me in getting an understanding of this issue. Most notably would be conversations with Samantha Connor and Cas from Un-Boxed Brain

There was something of an outbreak of discussion around this issue in disability communities a few months ago. Petitions were started and signed. Attempts were made to engage with particular websites to address the issue, unfortunately, they were fruitless.

I have at times struggled to get my head around what makes something inspiration porn and what makes something just a good story. Today I read a great article making it abundantly clear. Another great perspective is from a personal perspective here.

It’s really easy to get distracted and think this is all about people doing the wrong thing by taking action they believe will be positive in the life of a disabled person. Often this is action taken by a peer. But I think worrying about that is not the issue at all, what is the issue is the reporting. The using of such a story, which may or may not be a story about an action that is positive for the disabled person involved, for the generation of clicks, traffic, and virality. That is what the issue is.

As it is said in the linked article a very common reality is the passive presentation of the actually disabled person and promotion of the “normal” person doing such a “wonderful” and “selfless” thing. As I said the action taken is not the issue. The issue is the way the disabled person is presented which perpetuates an ‘othering’ of disabled people.

Because clearly the poor disabled person could never have been successful in life without this “inspirational act” so let’s spend a whole bunch of time promoting their selflessness and talk about how they felt doing such a wonderful thing.

Well, I call bullshit. This really doesn’t help anyone. Well, it does. It helps the reporter get clicks and pad out their portfolio. But really who does that actually benefit. What public interest does it serve?

But what if it this thing is even more insidious than that.

Click bait is one thing and is crappy and terrible as it is, it’s just an internet thing.

But…

What is not just an internet thing is the actual human persons who read this shit. The humans that are tacitly giving approval of it. The actual humans who’s ableist attitudes are just being confirmed.

Attitudes like — those disabled people are poor souls aren’t they. Those disabled people really do live a horrendous and horrid life, they must be so miserable and spend their entire life wishing they were something else.

Again I call bullshit…

Becuase it is bullshit. I know lots of disabled people that are more than happy with who they are and the life they live.

Sure we disabled people have challenges. But so does every human person inhabiting the planet.

And that there is the rub. It’s a human issue. Just because I am disabled doesn’t make me less human. That person who has mobility challenges and uses a wheelchair are not less human.

All this inspo porn does is to ingrain ableist attitudes. It perpetuates the idea that disabled people need rescuing because they are less than.

Ableism relies on all of us to turn a blind eye to it. To click on the click bait and smile. To not challenge the status quo of attitudes. To not challenge the idea that disabled people only get to live fulfilled lives because “normals” do something special to enable it.

To me, the most damaging part of ableism is the othering of people. I’m othered as an autistic, friends are othered because they have a spinal disability, some are othered because they happen to be downs syndrome, or deaf, or blind etc.

What if we keep this othering up. Where does it end, where is the final place, who is left as acceptable and whole as a human person.

George Orwell in his wonderful Animal Farm sums this up in a sense, watching that farm society cast off its shackles to become the egalitarian harmonious society of “All animals are equal” and gradually implode itself into “All pigs are equal.”

In the end we aren’t all equal, we are all different. We all have different strengths and challenges. Every. Single. One. Of. Us.

But not being equal is not the same as being less than. It’s not the same as being of less value. It’s not the same as being unworthy.

It’s ableism that resulted in generations of othered human beings locked away in institutions. It’s ableism that gave health workers the gall to suggest to parents they should give up their children and forget they ever existed. It’s ableism that resulted in those locked away in these institutions to be abused and damaged by those their to apparently care for them.

Indeed, it is the very fact of the othering that ableism creates that enabled those abusers to ever rationalise their abuse as just doing their job, just following orders, or indeed at times, doing what was “best” for them.

Inspo porn, it just ingrains an ableist mindset. It must be stopped.

Executive function -> Spline Theory -> Spoons -> Forks

Executive function -> or is it dysfunction….

It could go either way. But what is it. It’s a word that is often heard in neurodiversity circles but what exactly is it. Because I was always pretty convinced it had nothing to do with suits, ties, CEOs, and briefcases.

There’s a good summary here:

What is executive function?

The steps of executive function:

Around the time of puberty, the frontal part of the cortex of the brain matures, allowing individuals to perform higher-level tasks like those required in executive function. Think of executive function as what the chief executive officer of a company must do — analyze, organize, decide, and execute. Very similarly, the six steps of executive function are:

1. Analyze a task

2. Plan how to address the task

3. Organize the steps needed to carry out the task

4. Develop timelines for completing the task

5. Adjust or shift the steps, if needed, to complete the task

6. Complete the task in a timely way

So on the surface I can be like yes I know all this, I know how that all works and it all makes sense to me. Maybe I am all good with that! But, hang on just a minute. I think about how this works in practice. Well, it never just works out in a nice linear fashion like that. Does it for allistic and neurotypical people? I don’t know, I am not one so I can’t give a real opinion on that.

But, I can effectively analyse a test, I can make a plan, I can even organise the steps (well sometimes). Even I think I am pretty good with step six, completing in a timely way. It’s those pesky steps in the middle. Let someone else develop a timeline and I am fine. I managed pretty well to get through my bachelor degrees rarely needing an extension. The issue comes into play I think when it comes down to me developing the timeline. I have a tendency, I think, to underestimate the time needed to do something.

Step five, though, that one, yes that one is a real kicker. Making adjustments as needed. Now this I think is the one that really kicks me around and impacts my ability to successfully do things.

As an example, I am currently completing a web developer diploma. I am doing ok with that, I am doing it online, which is a real test of my executive function abilities. This past week I submitted a progress installment of a project I am doing for feedback. The response I got was helpful, however, it was pitched quite differently than the actual project guidelines indicated. Now I know that’s all good, but the impact for me was sitting there for a day almost paralysed about how to proceed.

That change and shifting of what is expected. It really can and does, for me at least, have a profound impact on task effectiveness and completion.

I have a suspicion this is an issue for many people, I wonder though if for neurodivergent people it is at a whole other level. In considering this I am drawn to the ideas of spoon theory by Christine Miserandino, spline theory by Luna Lindsey, and fork theory by Rosie Guedes.

In a sense, these are all metaphors of how it can be to exist for neurodivergent and other disabled people. For each day and each, there are only so many spoons and forks available. When they are used they are used. Yes, they can be replenished but there is a cost.

Now splines, I find this is where it really is at, the idea is that when we have to change tasks, there is a mental, and sometimes physical, packing up of one task and unpacking of the new. This can be incredibly anxiety provoking and the cause of much frustration.

The metaphor comes from computer games. There was a producer of games that used a splash screen for loading times, the splash screen said ‘reticulating splines’. I find it an incredible helpful idea. It encapsulates the reality that there is wait time and delay for me to shift tasks.

I am pretty convinced, and I admit it is totally anecdotal, that reticulation of splines has a massive interplay with my executive functioning success and challenges.

I am surrounded by devices, I have a browser upon at this moment with about 20 tabs open, one of those tabs, though, is a list of about 60 tabs that were recently closed. Next to me is my smartphone. The phone and the browser will notify of multiple events from multiple networks detracting me from the task at hand and resulting in that need to reticulate splines.

Yet the timesuck that social media is, I find myself loathed to close these notification means down, one might miss something important right?

Yet, the reality is, the spline reticulation process has a cost of not just time delay and frustration. Every time one has to reticulate, as it were, there is a price to be paid in spoons and forks. Depending on the person will depend on the number, but regardless, each time it costs. Yes, each and every time.

Say you have 20 spoons for the day and each reticulation costs one spoon, you might need to reticulate ten times in a day. That means you’ve used half your spoons just on that. Half your spoons are gone, just on task changing. You only have half your spoons left to do the really important stuff like, eat, dress, shower and breathe.

So I think for me this combination of Executive (dys)function, Spoons, Splines, and Forks; is a really useful combination of metaphors for navigating life. In an isolated vacuum, executive function is perfectly manageable and I can get it done. But life is not lived in a vacuum by any means and so it goes that the interplay of those other metaphorical concepts has a strong impact on how any given day ends up being experienced.

I am left with a thought now, that leaves me wondering, is it any wonder neurodivergent folks at times get mightily frustrated and upset at the idea of changing focus or moving between tasks with seemingly unnecessary regularity.

Your thoughts?

It’s our party and we can cry if we want to… but what then.

This post is not aimed at any person in particular. If you feel it is aimed at you, think again, it isn’t. There is no intent to identify any person. Please note this is an attempt at understanding and moving forward. That is all.

Readers may remember my recent post on personal healing vs cure culture. In the days since then, it has been quite a difficult time for sections of the autistic community. There has been hurt, accusations slung about, removal of people from group, misunderstanding and all the mess and rubbish that tends to go with that sort of thing. It has not been a party by any stretch of the imagination.

Personally, this has been a really difficult time. I have seen people I respected and trusted be hurt and I have seen others that I respect and trust cause hurt. I have spent much time trying to make sense of all this.

I can’t claim innocence in this, I have tried to make sense of it, and I have, I confess engaged in debate and argument that has not been helpful in the situation. In the midst of that though I have come to a conclusion, that, it is only by choosing to not stoop to the level of blocking, banning and ostracising people that our autistic communities can thrive.

The autistic communities are our party. It is our responsibility to make them work. It is our responsibility to not do to each other what in so many cases has been done to us.

In these recent days, I have seen all sorts of hurtful things happening. People, human people, told they are not good enough to advocate, accused of being purveyors of woo, had screenshots circled around, people attacked in PM’s. I have seen people co-opted by others to do the work of bullying their fellow autistics. This is not Ok. Surely this can’t go on.

At the more extreme end of actions, I have even seen hostile takeovers of groups resulting in lots of pain and hurt and public postings about such pain.

This is our party fellow autistics. It is our ball game, it is our responsibility to do better.

There is so much I could say. There is so much dirty laundry I could air about this, yet it seems so pointless and fruitless to do so. I am choosing not to. I do have something to say, though. A few things.

Firstly, there is no one leader in these autistic communities there are many. And there is no one person who holds a privileged position enabling them to declare who is and who isn’t an advocate. If you are embracing the neurodiversity paradigm and telling people about it you are then advocating, you are an advocate. If you wear a Âû after your name then you are by that very process an advocate. There aren’t real advocates and pretend advocates. There are autistics living autistic lives seeking to bring about acceptance and human rights for autistics and all humans. It doesn’t only count if you are part of some organisation, or if you are running a group, or if you are giving talks. If you are working in whatever capacity you are able then you are a true advocate.

Secondly, if you are an advocate, it is not an appropriate action to ban, block, and ostracise those you claim to advocate for. Life is complex, human relationships are complex. That’s a given. People will have personal issues with each other. But here’s the thing, we are in fact all people, human people with the same human rights. For any of us to deliberately block and ban a fellow autistic from their support structures, be it online of “in real life” is not an act of advocacy. It is an act of sabotage, bullying, abuse and self-preservation.

Thirdly, all of us, and yes I mean all of us will make mistakes. We will muck it up and hurt people. The important aspect of this is to do our own soul searching, to look inside ourselves and be big enough and honest enough to acknowledge and seek to make amends for it when we do. Holding grudges doesn’t help anyone. It hurts us as we hold the grudge and it hurts those we hold the grudges against. What’s more, it eats us up inside and that is surely not good for anyone.

I along with many others grew up as an undiagnosed autistic. I experienced bullying and abuse in just about every avenue of life I walked in. I do not want to experience that in the autistic community and I do not want to see fellow autistics experience it either.

It’s our party and we are responsible for making it a party and not wake.

I want autism/autistic acceptance across all levels of society. I want that my autistic children do not need to face the same bullying and abuse I have faced in negotiating their way through growing up and achieving their dreams. Implosions time and again in our own communities are not helping in this goal.

Please, autistic communities, please fellow autistics can we stop this now. Can we try to respect each other, can we try to talk before firing word bullets at each other.

I don’t want to pretend I have any special wisdom here, I’m just putting some words out there that represent something of how I am feeling and what I hope for.

It’s our party and we can cry if we want to. When the tears have been exhausted, though, what then?