I embrace the belief that Autism does not need any “curing”.

This is part 5 of an 11 part series read part 1 here

Next in our journey through the ten principles of Âû, is the fourth principle, which boldly rejects the need for any kind of cure for autism. As I like to say, autism doesn’t need curing it needs accepting.

Depending on your knowledge and experience in autism circles your response to such a statement can be anything from wholehearted agreement and solidarity through to utter dismay at such a statement. I stand by it. Over the 80 odd years of autism history, there has been a major push to seek the cause and find the cure for autism. It has only been in the last few decades that there has been an alternate voice declaring no need for such a thing.

Being autistic is not a bed of roses…

For certain it’s no walk in the park being an autistic human in a largely allistic world. Issues are encountered that impact quality of life and experience pretty much every single day. Things happen, it could be sensory overload, it could be a misunderstanding in communication, it could be any number of issues that impact in ways that are difficult as an autistic to negotiate through.

The thing is that does not mean autism should be or could be cured.

If the natural response to anything that is a challenge was to simply eradicate it, the world would certainly be a poorer place.

We’ve already been down this road…

In a sense, we have already been down this road and discovered with horror what a cure really means. I recall growing up in a world where it was quite common to come across down syndrome people in everyday life. A cure of sorts was developed but in reality not a cure but a way of avoiding it. I pre-natal screening test for the condition. Since then so many downs humans simply never have the chance to be.

Who gets to judge the quality of life anyway…

A key argument heard in regard to curing autism and other disabilities and conditions is an argument for the quality of life. That’s all very well, however, who gets to make that determination?

Surely that should be in the hands of the person with the condition themselves? Surely it’s in the hands of the autistic if they want to be cured or not?

Unfortunately, history shows that rather than place this in the hands of the one that can make the determination we place it in the hands of an apparent wish for “normality” or sameness. A preconceived idea of what it is to be a complete and normal human being.

When Ivaar Lovaas conducted his ABA projects he asserted that autistic humans were not in fact human but more like empty shells needing to be filled with humanity. One of his stated goals was to fill them with humanity and make them appear indistinguishable from the non-autistic child.

What authority did he have to make such judgements?

Not a disease…

Perhaps the most potent argument against any cure for autism is the very fact that it is not a disease to be cured. It reminds me of the old saying “If it ain’t broke don’t fix it”. I as an autistic am not broken I am different.

Autism is listed in the DSM as Autism Spectrum Disorder. Surely that settles it. There it is in black and white, something wrong that needs to be cured.

Yet, until 1978 the DSM listed a disorder of homosexuality disorder. Thankfully this is no longer the case. It took though the brave activism of the early gay rights campaigners to have it removed. Prior to its removal much terrible therapy and treatment were imposed upon the members of the LGBTIQ community. Conversion therapy, chemical castrations, aversion therapies to name a few.

It’s a declaration of humanity…

To me declaring I need no cure and ascribing to this tenet of Autistic Union is, in fact, a statement of humanity. A declaration that I am fully human and assert my human rights.

Whilst we continue to allow the narrative that says a cure is possible or desirable we act as enablers. We enable the terrible eugenic and damaging work of organisations like AutismOne and Cure Autism Now and Defeat Autism Now to continue. Also we allow the flocking of abusive treatments like MMS to thrive. We allow dangerous Chelation to continue.

I am convinced that until we move on from the narrative of cure that we thwart a lot of work that would actually help us as actually autistic people with better life outcomes.

Better understanding by the broader community.

Higher chances of meaningful employment.

Acceptance and celebration of our skills

I embrace the belief that Autism does not need any “curing”.

Yes, I embrace this belief. With absolute certainty, I declare and believe that autism does not need curing. It doesn’t need curing because it isn’t wrong. It’s a different way of being human, not a lesser way.

We have learned a lot about autism over the years and there is certainly a lot more to learn, just as there is with any outworking of being human. What we do know is that there is certainly a genetic and hereditary link to a person being autistic. There may be many genetic factors in play and there may be environmental factors also.

There are many cliches about what would happen if autism was cured and eradicated, or never existed. They centre around the idea that there would be a lot of people being social and no one creating the innovation that we rely on to make our way in the world, things like, electricity, the internet, the computers and phones and tablets we use as a matter of course.

How true some or all of that is can never be known in reality, as we will never cure autism, you simply can’t cure something that isn’t wrong. So let’s stop wasting time, money and effort on a fruitless endeavour.

I wear my Âû with pride knowing with certainty that I don’t need any curing and I embrace my humanity as an autistic human living on this blue-green planet called earth.

Keep your hormone spray away…

Here we go again…

Scrolling my newsfeed I came across the latest so-called possible groundbreaking treatment for autism. This time, at least it’s not a bleach enema or a bovine hormone injection. At least it seems that way on the surface. So what is it? It seems innocuous, at first, a nasal spray, now how bad can that be.

Yet again it’s the narrative…

The threads on the video are dominated by hopeful parents thinking this is a wonderful thing, and I get that. Overwhelmingly parents love their kids and want the best for them. The narrative around autism is essentially that autism is bad, needs to be cured, and of cause we must be aware of it. A subtext within the narrative is one of socialisation issues and that if autistic kids could be better at social stuff there lives would be demonstrably better.

The power if this narrative is that so many never question it. Organisations, research groups, charities, the media, parent groups etc take it is given that it’s correct. Resulting out of all this is the proliferation of programs and research projects all about getting autistic kids to socialise better. We see it in social skills traning programs in occupational therapy through to this situation of spraying a hormone up your nose to be better at socialisation.

The assumption…

The assumption here is that better social skills means a bettter life for the autistic person. But who says this is true. The assumption flows out of a belief that there is actually a “normal” way of being. Even if that were true, the pertinent question is who gets to say what is normal. Historically in many endeavours the definition of normal is imposed by the powerful majority.

Throughout a large part of modern history the so called normal was to be heterosexual cisgender. To the point that to be anything else was considered to be at best disordered but more often to be abhorent or an abommination. Thankfully this period is almost behind us.

Another assumption at play here is that the autistic person desires to be changed. Very often this is a false assumption and we are quite at peace with how and who we are. Change is not what is desired, but acceptance is longed for.

The treatment…

The treatment here is the use of a nasal spray to deliver doses of Oxytocin. The theory being this will enhance the socialisation of the user of the treatment. Oxytocin is a hormone created in the brain, many mothers would know of it as the hormone delivered to induce labour.

I don’t know about you but I have to wonder how the hormone connected with childbirth and breastfeeding is a good thing to spraying up the noses of children.

Not being a scientist, I am sure I could be schooled on the chemical and biological issues here, but, I am left with some pretty serios questions.

What is the effect on body systems of delivering a hormone of this kind into the body systems of children?

What may be the long term effects on the person of prolonged exposure to this hormone?

Changing by chemicals…

Make no mistake, this treatment is all about autistic people being changed to appear more like neurotypical people. Watching the video it is clear that the mother is very positive about it, that in their view, the child is much better off. But that’s the thing, it’s in her view. And, it is completely about the child meeting so-called “normal” behaviours and interactions.

Many parents will believe they are just trying to do the best for their kids, and I get that. I do. I do not believe they are attempting to harm their children. This does not change the fact that there is a dam good chance they are.

We have discarded the terror imposed on LGBTIQ community in the form of conversion therapies and chemical castrations.

We have discarded the action of forcing left-handed children to write with their right-hands because of the false belief there was something sinister about being left-handed.

Alarm bells should be ringing. This kind of treatment is fraught with danger.

This is akin to giving me a nasal spray to stop me being left-handed. Perhaps I should give my LGBTIQ friends a nasal spray to stop them being that. Hey, I know, lets make a nasal spray to stop those with gender dysphoria seeking medical intervention. I hope you would agree that those would be horrific.

Have we not learned.

Surely we must learn from what has already occurred. Surely we must take note of the many autistic adults who have experienced therapies in the past that have caused them significant harm. Many autistics who endured ABA therapy have ended up damaged with PTSD, and we should certainly be concerned about the long-term effects of any therapies that have at their core a goal of making the autistic person appear less so.

The Key questions…

Before we pursue and promote or even consider any therapy or treatment surely their are key questions to be asked. Each person will have different ideas about what those key questions may be and what priority they will have against each other. That of course is just a factor of how humans are.

For myself when it comes to this treatment I must reject it.

It flows from a premise that there is an ideal “normal” and I must change to meet that normal.

Autistic acceptance is not a consideration, in fact autistic traits are considered undesirable and a deficit.

Chemical induced change is surely just a mask.

In the end I am left wondering, is this just a crutch or helper treatment to pretend to be NT. If that is the case it must be rejected. Flowing from that is my experience of just how much of an impact passing or pretending has on me, how much this exhausts me and puts me out of daily functioning as a result. The use of this treatment would likely increase the amount of time passing or pretending and therefore lead to that impact of that being magnified.

This is a very real concern. It concerns me greatly that an end result here if not PTSD will be massive autistic burnout and autistic shutdown.

Keep your hormone spray away from my nose.

I embrace those who would sacrifice to protect all Autistic life.

Protect autistic life…

This is part 4of an 11 part series read part 1 here

Being Âû means that I embrace the protection of all autistic life and those who would sacrifice to protect it. The very first time I read this statement I recall thinking to myself, what the hell, is this even a thing?

Unfortunately, the sad reality is that yes it really is a thing. An, unfortunately, big and common thing. It manifests in multiple ways. There are those that claim they are doing therapy that autistics need protection from. Purveyors of snake oil need to be kept away. Undertrained police and emergency services personnel. Education providers, even so-called special-education trained providers at times need to be stopped from the damage that is done to autistic human people.

Every year there are multiple accounts of autistic people being killed or attempted to be killed by a range of people in the community. A recent example is a situation where the carer of an autistic man attempting to calm his autistic client was shot by police, the police claimed they were sorry, it was an accident. As they were actually aiming for the autistic man. The fact that the carer communicated with the police that the man was not a threat and was not armed and that he was holding a toy car seemed irrelevant to the police. You know, it’s okay it was just an autistic we tried to kill. Read the story here.

Then there’s the case of the Autistic child in an Australian school put in a cage. Yes, you did read correctly a fucking cage. They. Put. A. Vulnerable. Child. In. A. Cage. This particular situation came to light around a year ago, it is current in the media again as the United Nations is investigating it and a string of other similar situations in Australian Schools.

It’s not all this sensational, though…

Autistic humans need protection every day and every moment. This is both for the children and the adults. The proliferation of pseudo-science and so-called treatments to ‘cure’ or ‘recover’ autistic children and adults makes quite a list.

Special diets
Multi-vitamins
MMS/Bleach/CD
GcMaf
Hyperbaric Oxygen Chambers
Fecal Transplants
Chelation

To name some of the more commonly known ones.

And then the therapies…

Then there is the go-to therapies, the supposed evidence based saviours for families. ABA, being the prime culprit, but yet there is more, such as the Son-Rise program. There are others much more benign too like social-skills training and play-based therapy.

I won’t go into my issues with these therapies here as that deserves it’s own treatment, however, suffice it to say that inherent in all is the eradication of autistic behaviours and the “normalising” of the autistic human person.

Protectors…

Thankfully there are many protectors of autistics out there. Protectors who are autistic and protectors who are allistic. I embrace them all. I am privileged to call some friends, others who are not. But embrace them all I do.

People like Fiona O’Leary, Emma Dalmayne, Joanne Dacombe, John Greally, Briannon Lee, Amy Sequenza, Tina Richardson, Jeanette Purkis, Ari Neeman, Steve Silberman.

I honour them all. I thank them all. They protect me, they protect my kids. They sacrifice their own reputations and safety for the protection of those they will never meet because they believe in the inherent value of every human person.

Not just making up the numbers.

When it comes to the list of the 10 points of Âû this one is not just making up the numbers. It is in fact perhaps one of the most critical items on this list. In my view, if you can’t fully support and embrace this item you have no business wearing the Âû.

Fundamentally, the importance of this item is, in my thinking, directly linked with the narrative and public discourse around autism. For as long as the peak organisation like Autism Speaks and its ilk continue to describe autism as a blight on society, as needing to be cured, as stealing away children and destroying families the need for protection of autistic will continue to be important and imperative. For as long as the media continues to jump on the latest bandwagon of autism cures and treatments, for as long as the latest mass shooter is able to be labelled as maybe autistic. As long as all these things continue then the protection of autistics will be needed.

A brave new world…

I long for the day when this point in the list of Âû is no longer needed. It would be a brave new world where it was a given that I as an autistic did not face discrimination for being so, when I as an autistic did not have to fight for accommodations when I as an autistic could compete on a level playing field for employment.

I long for that brave new world, but until then I embrace those who would sacrifice to protect all Autistic life.

Thank You.

I embrace my Autism as a very significant part of my identity.

This is part 3 of an 11 part series read part 1 here

You what?

I embrace my autism as very significant part of my identity.

I suppose this means I acknowledge that it really is an integral part of me, so intertwined into my very being that it permeates across everything I do, everything I think, everything I feel.

It builds upon the issues raised in the previous post about Identity First language. Building on this to display that this whole identity first thing is a real thing, that it’s not just a preference, it’s a reality experienced in a tangible way.

To not embrace it would be an act of denial.

To not embrace it would be an act of self-loathing!

I’ve done enough self-loathing in my life to willingly move beyond that and to accept myself for who and what I am. An autistic human person.

Just Imagine

Imagine pretending one wasn’t really left-handed when they were. Thinking about handedness can be a good demonstration. I am left-handed, to pretend otherwise and to not embrace this reality would be an act of self-denial. The reality is that everytime I go to pick up a pen or pencil and write it is a natural function to do so in the left hand. If a ball was to come towards me my reflex response will be to block or catch it with my left hand.

Clearly, I don’t have left-handedness or I am not with left-handedness. I am left-handed. Similar examples can be drawn from thinking about LGBTIQ people. How offensive would it be to refer to them as people with gayness?

Just as handedness is a significant part of my identity, just as sexual orientation is an integral part of identity so too is neurology.

Suspension of disbelief is a term applied often when reading fiction or watching a movie or a play. It is an appropriate term for allowing oneself to suspend your rational thought and knowledge of how the world works, what is possible and not possible in order to participate fully in the experience of the movie or story.

When it comes to neurology we can’t simply suspend our neurology for a bit. I can’t suspend my autism, just as my ADHD friends can’t simply suspend their ADHD. It’s just not possible. This is not a movie or a book. This is life. And life should be lived with integrity to one’s self.

It’s Inseparable

Embracing 3d characters. Isolated on white background

I guess it comes down to this:

When I go into a social setting I go into it as an autistic human.

The moment I experience sound I do it as an autistic human.

When I write some text I do it as an autistic human.

I simply can not do them as anything else.

It makes no difference how much I try, how much therapy I have, how many strategies and skills I learn. It will not change the reality that I am autistic and therefore should embrace that reality and be true to myself.

There really are many situations in life where as an autistic I have to choose whether or not I should attempt to pass as “normal”. Sometimes this is the right thing to do, mostly it isn’t but sometimes it is. And when it is, it matters not how succesfully I pull it off, it changes nothing. I am still autistic, I will remain autistic.

The truth is that when I pretend or pass I can do this with reasonable success, but, the cost to myself is high. It is utterly exhausting. An act of passing for a few hours often requires more than a full day of recovery from the sheer exhaustion it results in.

I embrace my autism because it is a significant part of me. To do anything less would be a crime against myself.

I am Autistic. [or] I support those who are Autistic.

This is part 2 of an 11 part series read part 1 here

This is the first of the ten statements of Autistic Union. It seems on the surface pretty simple, in some respects it is simple, just the first statement in a list of statements to get things moving. Really, though, there is more nuance than that. It’s not just a statement of fact, though it certainly is that, but it’s also a statement of identity and in some respects of activism.

I am — a statement of being, in the moment, in the present, past and future.

Autistic — a clarifier of what that I am is.

Right from the beginning this list of ten points quickly asserts camaraderie and being. Flying in the face of disorder, disease and pathology.

Here, clearly stated is Identity First language. Flying in the face of the dehumanising language of the Person First brigade. The issue of Identity first language is an important one, I have written about it here and here, among other places. Without going too deeply into it, essentially it is a matter of being, not having. A matter of neurological identity and not pathological disorder or disease.

Essentially I am autistic, I do not have autism, I am not a person with autism. It is integral to my personhood, my whole being who I am. I don’t carry it around in a bag, I don’t put it on when I get out of bed, I have always been and always will be autistic, I didn’t catch it, nothing caused it and it can’t, won’t and does not need to be cured.

When a person says a person with autism or has autism there is an implicit sense it is something outside of themselves that afflicts them, rather than an inherent and integral part of their being, their neurology, the essence of every thought and action they partake.

Applying the Âû to my name, I confidently, proudly and purposefully proclaim that statement of identity. In my view, if one is unable to do so they have no business as an autistic person applying that Âû to their name.

Or…

This first statement also has that little or in it. There is contention by some that it shouldn’t be there. That this whole Âû thing should be just for autistic people only. I’ve thought a little about this, not incredibly deeply, but a little, and I have come to the view that I believe it to be a good thing that the or is there.

True allies to autistics are unfortunately few and far between, and why shouldn’t those true allies wear that Âû in solidarity. It’s a bit like wearing a flag pin to declare your national allegiance and your solidarity with that system. Who am I to declare that a person, though not autistic, who is passionately supportive of the ten points of Autistic Union and stand in solidarity with the autistics they know and love can’t wear an icon of allegiance?

And so whilst I am unable to really know what it is like as a non-autistic to support an autistic, I am incredibly grateful that those that are true allies exist and stand with me and all autistics., indeed the autistic world is richer for them, just as the allistic world is richer for us.

If you are an allistic person can subscribe to these points, then I support your choice to wear or not wear the Âû.

I wear mine with pride. I wear it joyously and consciously, it reminds me constantly of my solidarity and connection with my tribe.

The reasons to be Âûtistic Union

A journey for sure…

I proudly wear a Âû as a part of my name, to get to that point has been a journey for sure. Less than two decades ago all I really knew of autism was a vague idea about locked away children and Rain Man. I was truly ignorant about the reality of autism, even though I am in fact autistic.

That journey led me to the discovery of Aspergers Syndrome and how it is autism, the discovery that one of my children is autistic.

I discovered Tony Attwood, I did some reading and a few years later discovered that my youngest child was also autistic.

Of course, my own mind was wondering, my own thinking was all over the place. It was assisted in a way by subtle or not so subtle hints from my partner, that funnily enough I mostly missed.

But there was this concept going on inside of me, that there was a lot of the ways my kids were identified as autistic that applied to me.

Different Not Less

Throughout this time I learned that autism was just the way one was, that it really was a neurological thing, not an affliction but a different way of being wired. I can’t express my greatly enough how thankful I am for this understanding to my wonderful life partner Andrea. At this point in my journey, I could easily have wandered down a curebie road. But thanks to Andrea, that was never an option.

I recall one day, vividly, standing in a room at home, and saying to Andrea, I think maybe, I could be, perhaps, what do you think, that maybe, I might be, a bit autistic. I had spoken the words I had been thinking. The words that had been so hard to get out of my mouth, that every time I had tried they refused to be formed, I could see them on the screen of my mind but not get them out. But now, out they were.

The response was loving and caring, essentially summed up the message was like well duh. Of course, what do you think I have been hinting at all these years…

Fast forward through a process of jumping online and finding online tests, as many as I could find, completed a number of times each. All saying likely autistic, aspie etc.

Procrastination for some time…

Finally finding someone, I hadn’t really felt comfortable with the self-diagnosis identifying thing, though I totally support any who are.

Autistic you are…

Assessment and diagnosis happened. I am autistic. I have the “official” diagnosis.

For me what followed was a genuine sense of loss. It was unexpected and difficult to negotiate for me. I think this was because as far as acceptance went I had already done that in regard to my children, but, somehow it was now personal and I did have to work that through myself.

I could firmly assert that autism was neurological divergence, different not less. But somehow I was having difficulty appropriating that for myself.

I went through some months of heightened depression and lack of self-worth and feeling I was wrong. I went through some times of feeling guilty for bringing this on my family and others. It was a somewhat dark and difficult time, and so, I get it when parents talk about a grieving period.

As time went on, I guess the reality of all the things that made sense started to click into place, the clarity of how I was right all along, that I really was different. That I wasn’t crazy all this time, that I really was different, and there wasn’t something wrong with me, but there was, in fact, a reason why all the social norms were so hard to get and how I would become so overwhelmed in situations for some unknown reason, turned out to be sensory impacts.

I moved to acceptance. I joined some groups on facebook, I connected with others like me. I started to see people with this Âû after their name. Then more people, and I started to wonder what on earth it was.

What’s this Âû business

I discovered it was an autistic identifier. I was directed to Autistic Union’s page. I found this:

What does the Âû after my name mean?
1. I am Autistic. [or] I support those who are Autistic.
2. I embrace my Autism as a very significant part of my identity.
3. I embrace those who would sacrifice to protect all Autistic life.
4. I embrace the belief that Autism does not need any “curing”.
5. I embrace the self-advocacy goal of “Everything about us, with us”.
6. I embrace the definition of Autism as a neuro-social difference.
7. I embrace measures directed at protecting Autistics from attack.
8. I embrace a person-centered approach to all Autism issues.
9. I embrace rigorous scientific approaches to co-occurring conditions.
10. I embrace Autistics leading their own welfare organisations.

I could embrace all of these things. I could hold onto every one of them. I suppose I was looking for community, for identity, and of course connection. I added the Âû to my name and I have not regretted it.

The idea of being a part of a union of others is a powerful thing. The idea of a union of autistics standing for acceptance, inclusion, celebration and empowerment is inspiring. I am proud to be able to be a part of it.

The above 10 points are clear. They are for autistic acceptance and the embracing of the neurodiversity paradigm. For the full participation in life of autistic people.

Over the next posts, I am going to write about what they mean to me, and how they are important and how they have an outworking in my day to day life. How it is that I continue to embrace them and continue to wear the Âû with pride.

Stomach Churning

But that’s not the plan…

The plan was clear. What was to happen was organised, clear and going to happen.

When suddenly it doesn’t.

Things are changed. No notice given.

Feelings out of control.

Anxiety rising.

Churning stomach.

Sensory expectations ruined.

But the plans changed…

The plan was followed, sort of.

Sort of, in that the place and time were followed,

but, the content thereof was not.

Expectations thwarted.

Needs ignored.

Frustration rising.

Stomach churning.

Responses hard to manage.

Sensory refuge needs are heightened.

Emotions confusing.

But it just happened that way…

It wasn’t intended to go that way.

But it did go that way.

It went that way and attempts to signal not okay were missed.

Left fallen flat on deaf ears and unseeing eyes.

No way out. Stomach churns, emotions thrust upwards and outwards feelings uncontrolled.

Hurt, anger pain, anxiety. All rise up.

Left in the quagmire.

Isolated, alone, sad, angry, devastated, ashamed, confused.

Stomach still churns.

Emotions and feeling still rage about:

willing themselves for expression.

But their natural expression results in disdain, fear, disgust by others.

And Meltdown.

Meltdown comes.

Unwanted, undesired, despised and hated.

But still, it comes.

inescapable, but still one tries to escape it.

And Meltdown comes.

Intensifies the raging churning stomach.

Control lost.

Out of body.

Looking down.

Devastated.

Devastating.

Can’t ask for help.

Don’t know how to ask, what to ask for.

Help.

Just be normal…

Can’t you just be normal and you know less autistic…

Difference. Humanity seems to not like it. Well, at least when humans gather together we don’t like it. We as humans have a great difficulty in accepting that we are not all the same, that we don’t all subscribe to the same values. Oftentimes this is focused on the colour of skin, or the shape of eyes, or the spoken language.

In response, homogeneity is seen as an ideal. An existence of sameness, likeness and harmony are envisioned. It sounds like the worst aspects of a gated community.

In racial and cultural circles we speak of integrating, of not seeing colour. And yet racial profiling by law and order organisations is a thing. If it wasn’t #BlackLivesMatter would not exist.

Recently we have seen this in terms of gender diversity. So fearful of difference, so concerned with maintaining a social construct of homogeneity has the controlling organisational structure been that laws have been passed in some states to prevent transgender people using the bathroom of the gender they identify with. Passed off as a concern for the safety of children from paedophiles.

The difference in sexual orientation is so feared by some that laws are actively passed in some circles to prevent LGBTIQ people from access to the same human rights that heterosexual people enjoy.

All of this is just a cover up for fear of difference and an elevation of one group at the expense and detriment of another. In the name of normalising, atrocities are practised on various groups of human people. Perhaps no more so than on the disabled.

Why can’t we all just be normal, able-bodied, able-minded, socialised etc?

Of course, the elephant in the room, which is taking up so much of the room that it must be addressed, is the question of who determines what normal is anyway?

Last night here in Australia the renowned ethicist Mr Singer, advocated the euthanasia of disabled children at the whim of their parents. On being challenged at this by a disabled person Mr Singer attempted to distance himself and minimise the disabled people he referred to as only the severely disabled.

Again, who determines who is severely and who is mildly disabled anyway.

Is it Mr Singer? Is it parents?

The quality of life is an oft-cited argument. But who decides that? Surely that is for the individual themselves to decide?

More insidious, though, is the rampant ableism in western society that disabled people are of less value than non-disabled people. In the area of autism, the rhetoric around this is thick and many layered.

Autistics need in order to be normal to:

Make eye — contact

To be taught social skills.

To use their mouthparts to speak

To interpret the unspoken implied messages

To not stim in public.

And so the lists go on. So the expectation and hope that the autistic can just be a little autistic for the benefit of the non-autistics of the world.

If you think I am making too much of this, consider where the research dollars have flowed in terms of autism, even in light of the fact that both Kanner and Asperger the first key writers in regard to autism were of like mind that it was a condition from birth. But where has the world poured the research dollars?

Finding a cure. Finding a cause. Finding a blame — such as vaccines.

So many dollars and so much valuable research have been wasted in attempting to discover what is fruitless and pointless.

Studies to look at eye gaze in infants, studies trying to find a link between autism and vaccines. So much money.

And while it all goes on, and sadly, continues to do so, autistics continue to be subjected to conversion therapy so they can be normal. Social skills programs so they can be normal, forced eye contact so they can seem normal.

And on it goes.

It goes on and on and on while autistic human persons stand by calling for support services, job assistance, accommodation of their needs.

But apparently, it is far more important that we just be normal. It’s far less embarrassing to the general population when we just act normal and just look normal and just be a little less autistic.

What the world needs is acceptance of disability as a normal variant of human life. That yes #DifferentNotLess really is not a problem. That no we don’t actually all have to look the same, talk the same, walk the same, be the same.

Normal is just a social construct. It’s normal that needs to be eradicated, not disability.

Work hard they said

Work hard, go to university, get a good job and all will be well they said.

Over and again I heard the rhetoric of success hammered into me. Work hard. Do your homework. Study hard. Go to university. Get a qualification. Get a job. Climb the ladder. Take the opportunities when they present themselves. But you know what. It’s all complete bullshit. It’s all a great big giant façade. It doesn’t work that way. It just doesn’t.

There is a very large amount of truth in the saying “it’s not what you know but who you know”. But it’s not even that. That is the start. That is the “getting the foot in the door part”. The hard work seems to have absolutely nothing to do with any of it.

Maybe this worked a long time ago. When jobs were plentiful, housing prices affordable and all that goes with that. Maybe that worked in my parents and grandparents generations. Maybe in a world where production and making things was the big end of town. But not when so much of success in life and work is defined in a service based economy, in a relationship based economy. In an economy based on how you perform in a social realm according to un-written, un-spoken rules, to which you happen not to be privy to.

Success! But…

We live in a world that operates on an understanding of success that is built primarily on a façade. One goes to a gathering, a church meeting, a sporting club meeting, coffee with friends. Whatever the meeting of people the prevailing social status “norms” apply. Your success and worth as a human person is arbitrarily derived on the basis of Whether or not you have a paying job. What that job is. How much it pays. Whether you own a home or not, where that home is located. Whether or not you are married or in a committed relationship. Whether or not you have procreate successfully and brought another generation of humans into the world.

But is that success?

Regardless of whether we think it is a valid measure or not, certainly it is not a level playing field. Those of a more extraverted nature will always have the upper hand and even more so, those who are neurotypical will always be at an advantage.

This is not a gripe or a swipe at neurotypical people. My favourite person in the world is a neurotypical, and I love her deeply. It is though a reality. It is a fact that to achieve success as it is so often defined, a neurodivergent human is at a distinct disadvantage.

But is it really success?

Well of course it is success at some level. Success at winning the money game, success at winning the social game, the status game.

But is it really success at the human game?

Redefined…

What about redefining success into something more meaningful.

Perhaps those men forming what we now know as the United States of America had something when they declared the right to pursue Life, Liberty and the pursuit of happiness.

But what is Life?

Life is for living. For grasping onto with both hands. For discovering the passion within. Pursuing it relentlessly. Allowing it to direct oneself towards discovery.

And what is Liberty?

Liberty, surely it is the freedom to do life. Turning up everyday to an existence devoid of passion, in order to claim success because of the number of dollars associated with that employment, because you happen to have been able to purchase a home; surely that is not liberty.

Liberty, surely it’s freedom to be who you are, say what you believe, and live with passion.

And the pursuit of happiness?

What does that even mean. It sounds so wonderful, so totally and utterly democratic and freedom loving. And it is. But surely, it is only as one pursues life and liberty.

Success is not your ability to work the system to have the best job, own the best house, have the best partner, have the most toys.

We have all been sold a lie.

Success is in a genuine pursuit of happiness. A pursuit of liberty to live life. To be who you are.

Autistic Success…

It this is the true idea of success, then everyone, disabled or not. Neurotypical or not. Even autistic or not, can be successful. But success must be allowed to take root in the eye of the liver of the life.

I think this makes sense to me as an autistic. This is especially true when it comes to ability or lack thereof to negotiate the social landscape.

I think it makes sense to me as an autistic, even as I misunderstand the social interaction, lack a filter in social interactions, miss the unspoken communication, I can be successful as I pursue MY passion, My goals.

It’s selfish, I know, but, surely the best gift I can give to the world is to be the best person I can be, and surely the best person I can be is to be really me.

Autistic success, is then, in my view, being proud of who I am, and that includes being proud of being autistic. Proud because it is me.

Autistic success then must be measured as being the best darn autistic person I can be and not in how well I can pretend not to be autistic.

Pretend no more. Be the best you you can possibly be.

Carpe Diem.

5 Things Autistics Activists have to keep addressing but shouldn’t have to

Common themes abound on the internet. Social media threads abound with multiple stories on the same topic. Media outlets duplicate the same stories with tweaks and changes. The screen media news each night runs the same sort of stories over and again.

As an autistic blogger, when I look back on the topics I have written on there are a bunch of themes that repeat themselves. It seems again and again these issues gain currency in the autistic and wider autism communities.

The thing is, these topics shouldn’t really need to be harped on, repeated, rehashed and re-emphasised again and again. They are just basic things that are well established and should be just a given. If they were we would be able to move on to far more pertinent issues like focusing on real accommodations for autistic across the lifespan, strategies to support autistics to achieve their hopes and dreams rather than minimise those hopes and dreams. Perhaps there could be a focus on the absolute lack of support services and advocacy for autistic adults, the blocks and barriers to adults accessing diagnostic services at reasonable cost. Dare I say, we could even try to work on the lack of workplace participation for autistic persons, that is at severely low rates even within the disabled communities at large.

I long for the day when scrolling through social media feeds, autistic groups etc will not mean I am flooded with posts needing to call for Acceptance, the importance of language, the debunking of the vaccine causes autism myth, the need to highlight that autism is difference not disease and explanations of the spectrum as more complex than a line from severe to mild.

Let’s get to it.

Acceptance …

With the major autism groups worldwide promoting autism awareness, especially through April each year, it remains a thing that acceptance needs to be portrayed as a counterpoint to this message.

There has been some positive moves here with the United Nations this year focusing on neurodiversity. This is a step in the right direction. Yet still the need to counterpoint remains. April 2 is still called world autism awareness day. This in itself is an issue.

Myriad of parent groups continue to declare they are “raising awareness” in their Facebook groups, with their t-shirts, with their blue lightbulbs and puzzle pieces. The false message of awareness is insidious and is counterproductive to real acceptance.

Within society awareness is overall a negative. When we are called to being aware, or to raise awareness it is most commonly associated with something negative. This is an antitheses to acceptance.

Road signs tell us to be aware of danger.

Our sources of news call us to be aware of criminals, predators etc.

We learn to be aware of danger and hazard. We don’t want to accept these things, and rightly so. Overall the message of awareness is about something that is to be eradicated or mitigated not something to be accepted.

One argument often cited is that we must be aware before we can accept. The problem is that the whole focus of awareness is about not being subjected to that thing. It’s a false argument. One does not need to be aware that a person happens to be LGBTIQ to accept that person. One accepts a person because they are human.

Autism acceptance is about that. Accepting a person as a human person. The fact that they are autistic is just a part of who they are, it is not something to be aware of. It is something that within an attitude of acceptance, learning who that person is, and how they exist and function in the world can take place. But awareness is not a pre-requisite of that.

Language….

The issue of language comes up again and again. The most common factor in this realm is the question of Identity-first or Person-first language.

Identity-First language simply is embracing the integral aspect of being autistic. It is acknowledging how intertwined that is to oneself and in a sense, celebrating that one’s brain is wired that way. It is characterised in a person referring to themselves and others as autistic and not person with autism.

Person-First language on the other hand simply refers to the person as a person with autism rather than as an autistic person. This is common place within the disability realm, it is how we refer to people with illnesses such a person with cancer.

Person first language is rooted in an ideal that the person be seen before the disease, disability, diagnoses etc. However the reality is, if one needs to refer to a person with (insert issue here) then one is not really seeing the person first after all.

In relation to autism, the majority of autistic people reject person-first language and prefer Identity first language. This then should be a moot point. But it’s not, as an autistic person I find myself regularly corrected by people demanding I refer to myself as a person with autism.

Therapists, support workers, clinicians, doctors and authors regularly use Person-First language. Often in the face of requests by the autistic individuals to which they refer not to do so.

As an autistic I know that autism is hard-wired into who I am. Therefore I am an autistic person, just as I am left-handed and not a person with left-handedness. I am a parent not a person with parentness.

Vaccines…

The very fact that this topic continues to need to be addressed is an indictment on our society. Few things have been more well established than the fact that vaccines to not cause autism.

Unfortunately, celebrities and politicians continue to further this myth. Films are produced that are high on myth, innuendo and conspiracy but low on fact, evidence and actual verifiable data that continue to push this narrative along.

It’s a simple fact, autism is not caused by vaccines. There is no such thing as autism by vaccine injury.

Let’s just move on from this bullshit and talk about support and services instead of bogus causes that prop up the conspiracy theory industry.

Difference not disease…

Different Not Less. It’s really that simple. We autistics are different, we not diseased and we are certainly not less.

When you think about this it is pretty clear. A disease is a thing that we catch, a thing that against our systems, it infects us, it attacks us, it attempts to diminish us.

Autism is non of these things. It is a neurological difference. A difference in the way the brain functions.

Not too many years ago homosesuality was considered a disease and even listed as a disorder in the DSM. Few think that way now.

It is my hope that in time few will think of autism in this way too.

Again though this is a thing that we seem to have to keep harping on but shouldn’t have to. It is a thing that we should be moving on to in preference to issues that will impact the lives of autistic people in positive and life affirming ways.

The spectrum is not a linear measuring device…

Ah, the spectrum, it’s almost a catch all phrase. It’s used often to catch all of humanity into a linear concept from mild or almost non-existent to severe and debilitating at the other. This is a falsity. It gives rise to such statements as “everybody’s a little bit autistic”.

This is not helpful at all to those that are in fact autistic.

The term spectrum came into play in an update on the DSM, it was employed to broaden the understanding of autism. Prior to this many who are autistic were unable to be diagnosed due to the strict criteria. The idea of the spectrum allowed diagnosticians to see a range of behaviours within the critieria. Initially the term continuum was floated.

The thing is though this spectrum is not and never was intended to place an autistic person in a static position on an imaginary line.

There are no ends of the spectrum. There are infinite possibilities and those possibilities change given the circumstances involved. In one day on one occassion I as an autistic may function very well and another not so well, yet in another situation that may be reversed. Indeed, that same situation on a different occassion could very result in me functioning very poorly.

Just like all human persons, we all function differently in different situations at different times.

The problem with spectrum as I see it is that the idea of a linear line is a tool that attempts to place an autistic person in a box. By placing that person in that box, a set of preconceived notions of what may or may not be needed to support them is applied to them.

Far better would be, in my view, to acknowledge that a person is autistic and then spend the time and resources to get to know that person well enough to establish helpful and appropriate strategies to support them.

A final word…

I know we will keep speaking on these issues because we will most likely have to. But surely it’s time to move on and focus on the issues that will actually help and assist actually autistic people to thrive in the world.

Perhaps it’s time to move on from arguing about issues that are not actually about autistic living and thriving and about making parents and professionals feel better about their autistic family members and clients.

But in the meantime, we will I guess, continue to talk about these things, as they are imperative in shifting the narrative of autism as a negative to autism as just a different way of being human.