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.

Scratching that itch…

Be very careful! You just do not know what you might unleash.

I remember the words of my mother, and just about every other maternal influence in my childhood. Don’t scratch that itch you will only make it worse. Generally, this applied after being outside without protection from mosquitoes, or enjoying the sensation of rolling around in the long grass, or rolling down a nice grass hill. The cost of such joy was often irritating itches which were incredibly annoying.

I think this advice can often apply in regard to personal relationships and interpersonal interactions. Often we scratch an itch of irritation and everything can very quickly go from manageable or tolerable to anger and seething animosity.

I see this time and again in Facebook groups and threads that are populated by people with similar interests but different experiences of them. A common example I experience is the disconnect that often occurs in groups that have a large population of autism parents and a smaller population of autistic adults. To be fair of course, this may be experienced in the reverse by parents where the numbers are stacked the other way.

What I see and experience happening often is that a parent will say something about their child that an autistic adult takes issue with, or sees as a negative representation. Autistic adult attempts to set straight the parent, generally with the best intentions of clarifying or helping the parent to understand.

Oftentimes this is taken as an aggressive and anti-parent action. It often is not. Autistics do tend to be direct and factual and are often interpreted as being unkind, antagonistic and aggressive. It is my experience that this is largely not the case. Unfortunately, the dialogue quickly descends to shouting. The scratching of the itch results in increased irritation.

It must go without saying that the vast majority of autism parents want nothing more than to do the very best for their children. To see them grow to be happy and fulfilled people. It also goes without saying that the same is true for autistic adults, they want to be that themselves and they want that for the children of all the parents they interact with.

It’s not meant to be a fight.

Unfortunately, it’s really hard to make that mutual caring message come through in this autism community. Unfortunately, there is so much baggage out there that both parents of autistic kids and autistics themselves default to defend and conquer mode.

I am fairly certain that in reality neither group within the autism community really want it to be this way.

But the baggage….

In a group of Autistic adults on Facebook yesterday a post inviting people to have a rant was made. Essentially the idea was to tell whatever it is that you need to tell to F*#$ Off just go for it.

I am sure you can imagine some of the things that were cited. There were, of course, a number of recurring themes. Those predominant themes included:

Cure talk

ABA Therapy

Being considered abnornal

Disease Talk

Vaccine Talk

Negative talk about behaviours like Stimming

Lack of Empathy

Silenced or sidelined due to being too high functioning

I wonder if all this baggage is an insurmountable obstacle. I sincerely hope that it isn’t. I really do. But I truly do wonder. It seems to be that many adult autistics are automatically in defense mode expecting some of these issues to be raised in order to silence or discount the point you are making.

What can be done to help all within the autism communities to be better at listening to each other before moving to disagree,

discount, counter or change the mind of the other?

As autistics we often experience the feeling of being other or outsiders, surely we must seek to not do exactly that to those we want to advocate with and for.

Yet, today I read a post from a prominent autistic advocate that discounted her points of view and arguments on the basis of, basically, not trying hard enough to be “normal”, which in reality was code for to not be autistic. You can read the post here.

If we scratch that itch it may be more irritated. But perhaps in the case of advocacy scratch it we must. Perhaps we just need to scratch it with some more care and consideration.

Shame ADN Shame

I awoke today to what could rightly be called something of a shitstorm on my social media channels. Tweets and Facebook posts were flying thick and fast. The autistic

community were in something of an uproar. This was due to the publishing of an article on the Autism Daily Newscast claiming that Autistic children should be grasping somehow onto the perks of bullying.

Yes, you read that right. An autism specific site has published such utter hateful and damaging rubbish. The author of the article is not a Psychologist, Psychiatrist or any one with any particular credentials into the effects of bullying. The author is in fact an ABA practitioner and a Speech and Language therapist of some description.

The article can be found here but the content will be quoted below as I respond to it.

While the negative effects of bullying in school are real and cannot be pushed aside, there are benefits for peers, staff members, parents, and most importantly — your child with autism if everyone seizes the opportunity to act!

The opening paragraph says it all really. Really the author should have stopped at “never pushed aside” No lady, there are no benefits to anyone of bullying, except to the bully that gets away with it, is not stopped and is allowed to continue to ply their evil trade.

The author claims 10 Good opportunities from Bad Bullying. It is my intention to now consider each of these statements.

1. Promoting Autism-Friendly Programs: Bullying in schools can sometimes be the result of prejudice against the unexpected ways that children with autism speak and socialize. Not unlike other prejudices, this is an opportunity for parents and the school to promote social justice, tolerance, respect, and acceptance. Along with your help, schools should focus not only on integration within the mainstream for education but also guidance of how to better connect socially to their peers with autism — possibly through workshops or specially-structured activities.

If you skip over the first part of this it seems admirable, and in a sense it is. However,

the key thing here is all of these things should already be a part of the school culture and not something that is done in response to bullying issues. Furthermore, it is not a perk of bullying that these programs may be instituted. Possibly it would be an outcome put in place after bullying, but it is not a perk. This so-called perk is a simple load of rubbish as it all that is promoted here are things that should be in place and constantly reinforced in any school system or in fact any social system in which people engage.

2. Team Work: Working together as a team in partnership with you as the parent, the school’s teaching staff, aides, principal, counselors, and psychologists will provide the safest environment for your child to learn and enjoy.

Again this statement is something that should already be in place in the system. The school should already be working in tandem with you to provide the safest environment for your child to learn in. This is a no-brainer. The author speaks utter tripe.

3. Autism Awareness Every Month: Not just during October’s National Bullying Prevention Month but always, more awareness of the bullying of kids with autism means more awareness of autism overall.

This one is just purely ridiculous. The presence of bullying is not needed to promote awareness of bullying. Yes we should always be aware of the risk of bullying against all children, all people in fact, not just autistics but everyone. But to say that this is a perk of bullying for autistic children. This is really a WTF moment.

4. Kids Learn Skills: Teaching your child how to deal with bullies increases her verbal communication with words, nonverbal communication like body language and facial expressions, survival skills, civil liberties, and independence.

Kids learn skills from being bullied apparently? Well no, they are hurt and traumatised from being bullied. Another patently ridiculous statement. Our children autistic or not should all be assisted in verbal and non verbal language regardless, the presence of bullying is irrelevant to this. To suggest that this is a perk to autistics is abhorrent and offensive.

5. Builds Strength: As your child learns defensive skills from you, his friends, and his teachers, he is growing stronger connections with everyone.

Bullying builds strength apparently. Again, no it doesn’t it builds trauma, victimisation, social, emotional and physical damage. Yes a child learns skills such as these but this again should be done by default, not because of the presence of bullying.

6. More Friendships: Discussing the communication and social deficits experienced by kids with autism puts greater social responsibility on their peers who don’t have autism. When it comes to a child with autism, being a proactive observer can make all the difference to prevent bullying and protect them. As a result, your child will spend more time with good friends, make new friends, and possibly will want to get involved in different activities with them.

This point is just drivel, it really is. Absolute drivel, I can’t even begin to make any real sense of this at all. To begin with of course autistics do not have social and communication deficits they have differences. This should be seen as an opportunity regardless of the presence of bullying to teach acceptance of diversity and difference to all students as a matter of course.

7. Overall Well-Being: Monitoring potential bullying activity requires the te7.(sic) aching staff to supervise more and create new interventions to ensure the well-being of your child.

A perk of bullying is overall well-being. WTF. I can’t even imagine what in the name of

all that is good and right what on earth is being imagined by this crazy statement. Again, bullying does not promote well-being but trauma. Is it that hard to actually comprehend that fact. It seems so. Regardless the appropriate levels of supervision and interventions to ensure the well-being of the children should already be in place.

8. Healthy Relationships: Ways to deal with bullying also help your child deal with sibling rivalry, ‘stranger danger’, or any other personal threat.

Again, no. Patently wrong. Bullying is not stranger danger, it is not sibling rivalry and it is not just a personal threat. These things can be difficult to deal with but they are not bullying.

Bullying is an ongoing misuse of power in relationships through repeated verbal, physical and/or social behaviour that causes physical and/or psychological harm. It can involve an individual or a group misusing their power over one or more persons. Bullying can happen in person or online, and it can be obvious (overt) or hidden (covert). Source http://news.bullyingnoway.gov.au/the-facts/Pages/What-is-bullying.aspx

As can be seen bullying is not any of the things claimed by the author in this point. Healthy relationships are not a perk of bullying. They are not easy to come by and should be valued highly and certainly should not be touted as a perk of bullying in such trite and trivial ways.

9. Increased Life Skills: With your child’s increased communication, survival skills, and independence, she will become more aware of the people around her. This makes your child a conscientious citizen and a good Samaritan towards other people who may be in need overall, not just due to bullying.

Essentially here we are at a similar point as we are at the start. Increased life skills should be a standard ongoing part of any well-rounded curriculum. They should not be at the expense of children’s well-being at the hands of bullying. Increased life skills should be taught yes, but a perk of bullying no way. And as for the linking of this to calling for children to be good Samaritans at the hands of bullying. WTF. Utter rubbish, and extremely dangerous.

10. Self-Esteem: Ironically, and in spite of the bully’s goal to do the opposite, your child will grow self-confidence and self-preservation esteem.1

Perhaps here is the most utterly ridiculous statement of the lot. Self-Esteem is a perk of bullying. Again WTF. No self-confidence and self-preservation do not come at the hands of bullying. Quite the opposite in fact. I have been struggling to build this in my self all my life after experiencing the pain and trauma of relentless bullying.

With your help, your child can take a negative force and turn it into a positive experience!

No, it is not for the child to deal with the bullying and turn it into a positive force at all.

It is for those charged with their care and protection to protect them from it at all costs, and in the event that it does happen to deal with it, to stop it, to intervene and deal with the perpetrator.

No, it is not the victim of the bullying to have the responsibility of learning from it, becoming stronger from it and somehow achieving some crazy ridiculous list of perks from it. No not for one nanosecond it isn’t.

The article that Autism Daily Newscast have published here is nothing more than an exercise in victim blaming and shaming.

I am disgusted, angry and ashamed that a so-called autism information and advocacy site could publish something so anti-autistic, anti-child in general and indeed hateful diatribe against the reality of the experiences of those who have been bullied.

I call on Autism Daily Newscast to withdraw this article, to retract it, to apologise for it and to commit to not publishing this authors work again.

Connecting Hemispheres

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

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

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

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

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

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

Thanks Trish. You rock.

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

Good Intentions

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

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

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

Enter Autism.

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

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

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

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

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

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

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

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

But!

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

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

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

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

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

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

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

A Predictable Course

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not really a positive step towards diversity is it?

And therein lies the problem…

This shit is just not okay.

[Content Warning — ABA — ECT]

Today I came across a post online of another Âûtistic blogger known as Autistic Hoya, giving evidence before a court in regard to the Judge Rotenburg Centre. You can read about them on their website, which I am utterly convinced is a somewhat sanitised version of what the reality of the things that happen there. Here is a link to their website. If you head over there you will see that they promote the fact that they use ABA therapy as a treatment plan.

They advertise also they reject no one on the basis of extreme behaviour. This in itself would seem to be an admirable thing, however when one scratches the surface of what the so called treatment plans of ABA consist of and the way in which it is implemented, you will most likely be horrified.

This short video from Fox News is something of an eye opener.

This gives a little bit of information, not much but enough to spark outrage at what this centre believes is reasonable treatment and therapy to be inflicted on children and young people. It is just absolutely terrible and disgusting.

Here is the video of Autistic Hoya giving her evidence…

A young person here has been subjected to Electric Shock Therapy (ECT) against their will, whilst restrained, whilst screaming for relief, for several hours. Whilst staff laugh.

This is despicable. This is terrible. Disgusting. Abuse. Nothing other than abuse.

How does this happen?

We are here at this stage because of the elevation of ABA as a so-called evidence based therapy for Autism. In fact even it is claimed the only evidence based therapy. The big issue here is that the so-called evidence is all based, it all comes from within the ABA industry. There is no real peer reviewed independent evidence that corroborates these claims. We are left to accept what the industry says about itself. This is not acceptable and should not be allowed to be the case.

ABA itself is a behaviour based therapy that is rooted deeply in the work of Pavlov (yes the one with the dogs), B.F. Skinner and Lovaas. It is purely behavioural. It is not holistic, it does not take into account the internal life and motivations, feelings and experiences of the person exhibiting the behaviour in question.

ABA at it’s heart says that by training we will change the behaviour you exhibit because in our view it is undesirable. Essentially the goal then is to change behaviour that is undesirable. What that means in terms of Âûtistic people is behaviours like stimming should be eliminated, repetitive should be avoided, rigidity should be killed off. Social skills must be adhered to, communication with mouthparts is the only desirable form of communication.

Inherent within ABA is compliance training and aversion therapies. These things are on the books of the ABA governing bodies as acceptable components of an ABA therapy regime. Forget for a moment whether it is right to try to change an Autistic persons behaviour or not and simply ask the question of yourself, would I want my Neurotypical child exposed to these aversion therapies, or this compliance training. I would suggest you would answer no?

What does this have to do with the Judge Rotenberg Centre, well this horrible ECT treatment is an approved ABA aversion therapy.

One thing that will happen in communicating with many parents of Autistic children is that they will say their child loves their ABA, they love their therapist. This may be true, but does this make it right? It is not hard to see that a child that is trained in a behavioural therapy to enjoy themselves will in fact look like they enjoy themselves. It just stands to reason.

Another response is well that’s old ABA my ABA is not like that ABA. Of course one would hope that was true, but in reality ABA is ABA. Unfortunately the waters are muddied because as ABA is so-called evidence based it is the therapy that is often the only one that funded under insurance situations, therefore, what we have is a whole bunch of things that are not ABA called ABA so that they are funded under insurance plans. Crazy but true.

The most unfortunate thing about all of this is that even though there are many cases of recipients of ABA developing PTSD and many many autistic adults speak out about ABA the attraction of it in Autism parents seems to be relentless. It is again a factor of the relentless negative narrative that autism is given in media and by peak bodies. In order to change this the narrative must change.

After all that, all I can say is that ABA must be stopped, until it is horrendous practices like those at the Judge Rotenberg Centre will continue unabated. Until ABA is exposed for the damaging dog training it is these horrendous practices will continue. And perhaps most importantly, until the negative view of autism is changed to a narrative of difference and neurodiversity these horrendous practices will continue.

We must accept as a society as a whole that autism is difference not disease, difference not disorder. Yes we are #DifferentNotLess and #WeDontNeedACure.

When the War is Over

A Picture of a war tank

You see phrases bandied around about Autism wars, there is even a blog dedicated to the topic. It’s a great blog actually I recommend you visit it here. Unfortunately it really does seem that there is an Autism war on. It’s not a nice war. It’s a horrible war. It pits parents against children, doctors against parents, Autistics against parents groups. It puts Organisations against the people they claim to support.

It really is an very exhausting war. I am a fighter in this war. It’s not by choice it is by necessity. I am in this war as a combatant. I am a combatant for my very identity. For the acceptance of my identity. My identity and many of my friends identities. Indeed, my own children’s identity.

I am generally one who abhors conflict, I have spent years running from it, avoiding it at all costs. Here I am now however, loading up the barrels ready to go in and blast my way through. To blast away at the enemies of Autistics. The enemies of Neurodiversity. Those that seek to deny the existence of the autistic, deny them the right of a fulfilling life, to deny them the existence of adequate support, adequate assistance, adequate accommodations. Deny them the experience of quality education and employment.

Image of a sunset with an old style American Civil War style Army Cannon underexposed in the foreground

The gun must be loaded, the artillery prepared, the fighter jets prepared, the destroyers made ready. We must be ready with all the different weapons at our disposal. All of them, every single front we see needs to be taken up. The enemy is fighting. The enemy has, unfortunately been advancing, they are currently in charge of the propaganda machine that spreads the narrative about autism, that muddies the water and makes it so difficult to fight a fair just war. The diplomacy angle is very hard to engage in because the propaganda is so fierce, strong and thick on the ground.

There is of course a big question. Who is this enemy? Again this makes our task difficult because our enemy is difficult to define. They are at times difficult to identify. Oh there are certainly some obvious ones. They are easy to identify. The ones like The big peak bodies like Autism Speaks that run a horrible narrative about the battling autism, about epidemics and finding cures. There are the dangerous ones like Genesis ][ Church and CD Autism and MMS and Kerri and her minions. Spreading there horrible abusive and dangerous cures.

Yes there are the ones that are easy to identify. Like ABA therapy. These are though, merely the institutional enemies. The ones that have effectively declared themselves. They include the above and there are others, like the AutismOne quackiest, the recently deceased Dr Jeff Bradstreet, the discredited Wakefield. The lie spreading Jenny Mc Carthy and her horrible Generation Rescue.

Really I have just named a few. Just a small segment of the big players that are in battle against Âûtistic people and Âûtistic identity. There are so many more and I am sure there are many that others could name that I have not even thought of. The difficult ones to identify though are not these, they are the less out there, the parent who writes Facebook posts about special gluten free diets, the celebrity chef who says his menu can cure autism. The dangerous health nuts that claim fecal transplant have given them back their child. The rampant anti-vaccination narrative that pervades the dialogue even though it has been thoroughly discredited by so many research studies.

Image of a memorial garden. A seat in the foreground and a memorial sculpture in the background. Green grass and pathways run through with trees on the left.

A picture of who the battle is against I hope has been painted, but it’s so much more than about defeating them. It is so much more than this. So much more about the defense. The defence of ourselves and the many to come after us. To rescue them from Bleach enemas, Chelation, Poo Transplants, GcMaf. To reduce them from therapies that could leave them with lifelong PTSD. To rescue from lives filled with a belief their very parents had wished for a different child than the one they had.

This is who we are fighting for. This is the picture we must keep in mind. This is why we must choose our weapons wisely. Look for the weapon that suits not only the particular battle we are in, but the weapon that plays to our strength. It could be art, it could be writing, it could be making a big noise, it could be making submissions. The idea that there is only one way is fanciful.

I don’t want this war. I want this war to be over. I want Âûtistic people to be valued. I want Âûtistic people to be included. I want Âûtistic people to be celebrated. This can’t happen with the current state of play. This can’t happen while the rhetoric in the media is as it is. This can’t happen while quackfests like AutismOne are able to exist. This can’t happen while ABA therapy is allowed to continue to take Âûtistic children and attempt to transform them into neurotypical children.

As long as Peak bodies like Amaze (Autism Victoria) and others I am sure, try to take a so called unbiased stance. Saying they don’t promote a particular therapy but ABA is evidenced based, all the while ignoring the voices of Autistics speaking against it. Then, Âûtistics can’t live without fear of being silenced, sidelined and ignored.

Yes there is a war on. Yes it needs to be fought. The question is will you fight it?

I long for the day When the war is over.

No Actually Autistics Won’t Shut Up

[Content Warning — ABA]

As I sit in front of this laptop tonight punching out words it is with a level of frustration and anger that is quite elevated. My day today, in which I did manage to complete some worthwhile assignment work in my course of study, was punctuated with periods of interactions regarding silencing, ignoring or pathologising of autistics and autism.

I was engaged in commenting and responding to a bunch of ridiculous statements made in a few different settings. It all began as I faced a post from my home state’s peak autism body. Otherwise known as Amaze. It’s a good name as I am constantly amazed by them. If it is not their use of ableist language in flyers and their continual focus on social skills or skills for teacher programs it is, like today, their support, be it tacit or clear for ABA therapy.

I read their email which they pithily call the “espectrum” where they advertise a information session and training opportunities for ABA therapies. Of course when I asked them about via their social media channels I received no response. Telling isn’t it!

Countless Autisitcs have written of their devastating experiences with ABA. Well maybe not countless, but certainly enough for the so called Amaze to stop being Amazed and actually start listening to these actually autistic people.

Next today I was confronted by the

appalling situation that is the forthcoming APAC conference in Brisbane in September. I had not looked much into this conference as the costs are simply prohibitive for me to be able to participate in. As can be seen from the image here the cost to participate as an actually autistic person is $900 out of your own pocket.

It was certainly with dismay that I discovered today that there will be no interpreters or auslan provided for participants. No hearing loops or the like. Additionally I discovered that the promising Future Leaders has been scrapped for this conference and that it appears that actually autistic people were actively discouraged and silenced from the organisational phases of the conference.

Later today I see as I scrolled through my newsfeed on that all encompassing social network Facebook, yet another report of yet another piece of ridiculous research. This one claiming the rise (of which there is none) of Autistic diagnosis to be due to semantics. You can read it here. Perhaps it was a mistake, but I was unable to help it. I should no better but alas.

The comments on this post were in some respect the usual expected uninformed rhetoric. There was much a good tinfoil hat wearing conspiracist would be happy to see. The highlight was a particular poster maintaining that there was indeed a link between Autism and Vaccines. No amount of rationality would deter him from this path. Among the other tinfoil hattery he was possibly one of the more rational posters.

It really does never cease to amaze (no pun intended) how incredibly often it is that we the actually autistic must face this kind of rubbish. That we are ignored and silenced and pathologised.

It seems the writing is definitely on the wall. Our Australian Autism peaks have chosen their lie of the land and it is not with the actual autistic but with those that are more akin to the cure culture and change therapy agents.

It seems the writing is on the wall that we in Australia have been very busy as advocates speaking out about international issues but have neglected our own home fires. This needs to change. No we must not neglect the international campaigns such as BoycottAutismSpeaks and the like. But surely our first priority should be to stand up for our very own Autistic Rights.

It seems the writing is on the wall that we are lacking here in Australia any presence of some kind of unified and active advocacy strategy.

It seems the writing is on the wall, In the words of the late great Gof It’s Time.

It’s Time for us the Actually Autistic to stand tall, strong, loud and proud.

No More Ableism

No More Silencing

No More Crazy Research

No More Pathologising

No more Cure Culture

No More ABA.

It’s Time.

More Listening.

More Submissions.

What about social Skills…

Common process for young Autistic children is for them to head off to an occupational therapist, speech therapist or a team based social skills group program. Clearly this is a preferable option to an ABA program of compliance training and applied behaviour modification therapy delivered for hours on end as if it was dog training.

Generally it is safe to say that these programs are not dangerous to children, however they should still be questioned. Are they actually effective? Do they actually result in better outcomes for the children. Indeed, do these children go on to live better and happier lives, more fulfilled lives because of them. Does in fact make the social interaction in which they engage easier, more fulfilled and more successful.

Clearly here we are not considering the evils of ABA, CD, MMS, Chelation, GcMaf, Stem Cells and the like. But still we must consider the long term outcomes of these programs.

What exactly are these children learning and gaining in terms of their longer term success in negotiating life in a predominantly allistic world. A world that demands they interact in order to have successful educational and employment outcomes.

My personal experience was social skills pretty much taught at the end of a wooden spoon and a large amount of raised voices. Clearly the formerly mentioned approaches are preferably, nevertheless I learned many different social norms and rules. These equipped me supposedly to negotiate my way through life and provided an ability to attempt to fake an allistic life.

My two autistic children have received a thankfully more fun, caring and enjoyable program of learning such skills. But the big question of course is of what benefit are they. Has it actually been a positive experience in terms of the outcomes for the children. I guess in terms of my children that is a question awaiting answering.

In my case I can only say it has been an abysmal failure. Yes I managed to get through 40 odd years of life thinking and pretending to be an allistic member of society, but in reality this was an abject failure. On the education level my schooling was essentially a time of living through a fog. Consequently I was a very late starter to further education, which, of course, has had considerable impacts on my employment outcomes. My employment history is one of many different position of varying timeframes but never anything that could be considered of anything like long term.

Indeed the the positions have ended almost every time as a failure in the social context. Missing cues and being inappropriate. Misunderstanding cues and expressing things in such a way that left the employment situation to be untenable.

The big question of course is why has this been for me, and I would suggest a myriad of other autistic people, an abject failure. What is it about either the social skills training or the social context within which we live that is unable to be taught.

Greater minds than mine have considered these issues, but I would like to offer my take on it. Essentially this is that every social situation to be negotiated is different. They are in fact never the same even when they might look quite the same. The issue with this is that the social skills training is in effect like teaching a bunch of monkeys how to live as a tribe. Perhaps that is a little crass, but I think it is a fair analogy in terms of thinking about social settings like they are instinctual based situations rather than nuanced and varied from time to time, person to person and day to day.

It is my experience that in my Autistic mind that when faced in a social situation I am faced with having to draw on the rules I have learned, choose the correct rule or skill and apply it to the situation. So have a think about that for a moment. Consider, an Âûtistic person already in a state of stress due to being in a social situation. They meet someone and they have to assess, what comes next, oh that’s it I have to shake this persons hand, give them eye contact and make an appropriate greeting. Oh but wait this person is of a different ethnic culture and there rules are different, so what do I do, oh that’s it, I do all that but I don’t look them in the eye…

A group of approximately 5 monkeys sitting in a group.

By this time the Âûtistic person is already looking a little out of place. Already the other person in the situation is possibly wondering, oh, this is odd, what’s the go with this person I wonder.

A gap in time, occurs. A gap in time that the Autistic person needs to think and work things out. However it is also a gap in time that the allistic person is left to wonder and unfortunately often reason that this person is somewhat different, this person doesn’t fit in. I wonder what the go is here.

To make an apology, it is my view that social skills training and programs, whilst in many ways benign, teach a bunch of rules, skills, expectations and behaviours from which, the Âûtistic person can draw. Something like a filing cabinet from which to draw. Unfortunately this filing cabinet is a little more like a floppy disk at worst or a traditional platter based hard drive at best, a storage system that is far slower than the modern solid state drives which very quickly access information.

The Âûtistic person must run this storage system, find the correct folder, find the correct file, apply the correct file to the situation. This would be all very well if the files fit the situations correctly. The reality is though that they don’t. As described in the above the variations and nuances of the social context, whether it be due to facial expression, body language, tone or any other of a myriad of possibilities mean that the Âûtistic is often left attempting to apply a square peg into a round hole.

A large bunch of people in a crowd of uniformity

Every person, whether Âûtistic or Allistic is unique. People are not a mass of uniformity. They do not walk in rows of conformity. People do not even act in the same way on repeat occasions of similar situations. They just don’t. It’s just that simple!

So the question what about social skills?

I have come to the view that we should dispense with these programs. There are many other things we can in fact do to assist Âûtistic children to grow to lead full lives and achieve successful outcomes in education employment and connection. There are many things that are not social skills training but in fact similar types of training that we already make an effort to teach our allistic children.

I would include in this efforts to teach our Âûtistic children Resilience, confidence and self-love. An understanding that regardless of anything they are valued, they are loved, they are worthwhile. In fact that yes you are a bit different, and that doesn’t matter because you are #DifferentNotLess. You’re #ActuallyAutistic. And most of all you are loved unconditionally by us your mother and father and brothers and sisters.

I wonder what your thoughts might be on this issue.