Thursday, December 18, 2014

Autism is not an illness: The problem with how we treat Autism

So far in this series I have talked about the fact that I do not think Autism is an illness, despite the way the dominant discourse around Autism runs. I have also talked about how I think the diagnostic process for Autism contributes to the damaging illness discourse. Next I’d like to tell you where I am at in my thinking about the popular treatments for Autism. 

If you are thinking “if Michelle doesn’t think Autism is an illness why is she talking about treatments?” then I suspect we are largely on the same wavelength. I do not think Autism needs to be treated. That is not to say that I think Autistic people should not attend therapies if they find them helpful. One of my kids benefitted greatly from some Speech Therapy and another found Occupational Therapy incredibly helpful in managing sensory processing challenges. 

What I am saying is that I do not think that treatments designed to manage behaviours with the aim of making a person appear less Autistic have any place being promoted as suitable approaches to helping Autistic people. 

I am aware that this statement will not win me many friends in the community of parents of Autistic children, but I am saying it anyway. 

Approaching Autism as something that must be treated, symptoms dealt with, undesirable behaviours minimised is nothing short of harmful. I would go as far as to say behaviour modification approaches to treating Autism will inevitably destroy the Autistic persons sense of worth, confidence and ability to advocate for themselves. I am specifically talking about Applied Behaviour Analysis (ABA) and pretty much all treatments based on it. 

There has been a lot written about ABA and the problems it causes, so I’m not going to pretend any of my thoughts on this are particularly original. I did, from very soon after my kids diagnoses, feel very uncomfortable with the idea of trying to cure Autism. I did feel uncomfortable with many of the strategies suggested to me to “manage behaviour”. But I was not, at that stage, able to articulate what specifically made me uncomfortable. It wasn’t until I met some Autistic activists that I began to understand fully what the problems were. I always give credit where credit is due, so rather than rewriting what others have said I am going to share a couple of articles with you (all links will open in a new window, so it is safe to click on them, go read, and then come back). 

The first is by Sparrow of Unstrange Mind. It is very hard to choose just one thing to quote from Sparrows article on ABA. The section I have chosen is a bit long, but it is very important. Please do read it. 

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.
Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.
In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

You can red the full article by clicking > here <   

The next quote is from Neurodivergent K of Radical Neurodivergence Speaking. 

“A consequence of everything being about "children with autism": no one thinks about the adults. They desire desperately to make us indistinguishable from peers (using a very interesting definition) and then as soon as we meet that goal, we're allbetternow. No one spares a thought for the adults who, years ago, were declared to have made the goal, hit the holy grail of "normal enough".

Indistinguishability isn't a moment though. It is an unending job, and it gets more and more complex as you age. Demands keep increasing: academic demands, including those that require figurative language and abstract thinking, increase. Time management demands increase. As we grow up, we are expected to take on more responsibilities at home and eventually move into our own homes. We're expected to get a job, do that job, maintain our own homes, all at once.

And maintain that visage of normal…….“

You can read the whole article by clicking > here

If you are interested in reading more from these great writer and others, there is a great list of links on the PACLA Facebook page- click > here <. I can’t tell you how glad I was to come across all these great writers and activists. I hope you will find their words as helpful as I did. 

I am not the only one listening to them, either. As more and more parents take time to listen to Autistic adults, there is a growing body of similar feedback about ABA from parents as well. I feel fortunate that we were never directly exposed to ABA in our family. Others parents whose children have been are now speaking out against it, alongside Autistic adults.

“You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”
“And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model”. Richard Long, quoted on Emma’s Hope Book. 

You can read the whole article by clicking > here

As parents it is time we stopped and really thought about what we expose our Autistic children to. We must ask ourselves some tough questions. We must ask professionals some tough questions. How can behaviour modification therapy, that demands children behave in ways that require unquestioning compliance, and that are counter to the coping strategies that come naturally to them, be beneficial for children? And what are the implications in the life of that child once they are an adult? 


There are alternatives. If what I have written and shared here does strike a chord with you, I would recommend you go over to Nick Walkers blog and read his article > Neurotypical Psychotherapists and Neurodivergent Clients <. In it Nick shares ideas that will help parents know what to look for in a therapist that will help their child. 

We can, as parents, do better and choose better for our children than therapies that try to make them fit in and appear more “normal”. We can, and we should. 


Image is an orange square with black border containing the words
"Don't waste time being normal
(adjective 1 conforming to a standard; usual, typical, or expected)
just be your own wonderful self" 

Sunday, December 7, 2014

Autism is not an illness: The problem with how we diagnose Autism

Every day I see people sharing the story of their child’s Autism diagnosis. And every day I see this phrase, “From very early on I could see there was something wrong.” One word in that sentence makes me really uncomfortable. “Wrong”. And it brings to mind some questions. 

Why does society see anything other than “normal” as wrong? 
Why is Autism seen as a defect? As undesirable? As inherently bad? 
Why is Autism talked about as something separate from a person, like if you removed it there would be some kind of a better version of the person left behind?
Why is Autism compared to AIDS and cancer? Why is Autism talked about as if it were an illness?  

All these things could be partly attributed to the way Autism is diagnosed. By that I mean two things. 

The first is that the way we identify who is Autistic is to have them diagnosed by a medical professional. Medical professionals are the gate keepers to all sorts of things. If I want to (in Australia) get some support from a psychologist, for example, because I am struggling with some emotional issues, and I want to be able to access some financial assistance to pay for it, I have to get a referral from a General Practitioner. The GP doesn’t need to know I need emotional support, and there is not really anything the GP can do about it either. It is not a medical problem with a medical solution, but I still need to see a medical professional to access support. It is similar with an Autism diagnosis. For the most part, there really isn’t much a medical professional can do to help an Autistic person with their Autism (they might be able to help with things like anxiety, but that is not Autism), but to get a diagnosis they must be consulted.

The second thing I am referring to when I say Autism is thought of as a disorder/defect/illness is the actual diagnostic procedure and criteria. To understand what I mean here, some history is required. 

As I interpret things, the history books say that there were two men working on recording a particular set of symptoms/behaviours around about the same time (1940s). Hans Asperger, an Austrian paediatrician, and Leo Kanner, a doctor working in The United States of America, who both used the word “autism” in describing what they were observing (maybe because Bleuler used it a generation earlier in recording the withdrawal and stimming behaviours he observed in adult schizophrenics). Even though they were essentially recording the same sorts of things, the fact that  they weren’t working together (an ocean and a World War separated them) meant that two different labels were born. This lead to the common belief there is a kind of “less bad” Autism (Aspergers Syndrome- named by Lorna Wing in honour of Hans Apserger) and a “more bad” Autism (Autistic Spectrum Disorder)- which has evolved into a graded spectrum with some people being considered more Autistic than others. 

Image is a photo of the cover of the DSM5,
it is purple with the words
DIAGNOSTIC AND STATISTICAL
MANUAL OF
MENTAL DISORDERS
FIFTH EDITION
DSM-5
AMERICAN PSYCHIATRIC ASSOCIATION
on it. 
Initially a diagnosis of Autism was followed by treatment which could include use of LSD, electric shocks, and behavioural manipulation therapy. Sadly, there are people who still think some of these style of treatments are appropriate. Fortunately there are many now who do not agree, and the use of these treatments is declining somewhat. However, the mid 1900’s is when the first Diagnostic and Statistical Manual of Mental Disorders was being put together by the American Psychiatric Association. By 1968, the word Autistic is in the DSM II, though not as a diagnosis in itself. The 1980 DSM III included diagnostic criteria for Infantile Autism, and the 1987 DSM II-R included Autistic Disorder.  DSM IV, IV-TR and 5 all contain diagnostic criteria based on observation of a group of behaviours. 

It’s not surprising, given it was medical professionals who were in a position to notice the trends of behaviours and challenges, that it was medical professionals who were the people to put together a diagnostic criteria for Autism. I’m not going to argue diagnosis is a bad thing. There is a lot of value in knowing who you are, having insight into your strengths and weaknesses and being able to identify with your tribe. Diagnosis can be a good thing. But it is a shame that because it was medical professionals who identified Autism, the discourse surrounding it continues to be one of medicalisation and pathologising. However, time- as it does- has shown us that Autism is not something that can be “treated” and “cured”, and there is now much research* to show that Autism is a result of genetically influenced neurological changes. That is, as Nick Walker says, “Autism is a genetically-based human neurological variant.” 

*{If you would like to look at some of the studies go to Google Scholar, and search ‘Autism genetic’ and you will get pages of research reports and journal articles. Some of the studies were done 20 years ago, and clearly show Autism to be a genetic variation. Be aware, though that reading the studies will be incredibly triggering for many, as they are full of pathologising language.}

So, if we accept that Autism is a genetic variance that is simply an expected part of the wider human experience, we have to recognise that this is in stark contrast with the way Autism is viewed by most now. The problems with the way we diagnose Autism, are that official (ie credible) diagnosis: 
a/ is only accessible through medical professionals, 
b/ categorises Autism as a “Mental Disorder”, and 
c/ is seen as something that needs to be treated. 
Acknowledging this discrepancy, we must look at the damage approaching Autism as a series of undesirable behaviours, and as something *wrong*, does to Autistic people. 

We can start by imagining what it would be like to exist in a world in which you can easily find evidence that shows people think you are not good enough the way you are. Of course some may argue that we all feel that way from time to time, but for Autistic people the confirmation exists in the form of specific therapies design to fix them (or at least make them seem less Autistic), and media campaigns designed to make everyone scared of having a child like you. This is damaging to a persons confidence and sense of worth. 

Now, to be clear, I am not suggesting that the whole system be immediately upended and changed. To start with, I don’t have a clue what it would even look like to try to define Autistic culture without a set of diagnostic criteria, and that is not, in any way shape or form, my place. There are much wiser minds than mine who would be willing and able to discuss this. I am merely recording my thoughts on the topic, as I process what I hear others saying about the impact pathologising of Autism has on Autistic people. I am trying to bring this conversation to the people I am in contact with, in order to support those who have been talking about it for a while now. I am saying that I believe it is time that people in a position to make change in the way Autism is diagnosed need to begin to reassess the way it is done. They need to consult with Autistic people and listen to what they say about how the current system serves them, and how it could be improved. 


As with each of the articles in this series, your thoughts and comments are both encouraged and welcomed. What do you think? Do you agree that the diagnostic process contributes to the stigma around Autism and the negative attitudes toward it? I’m looking forward to continuing the conversation with you. 

Friday, December 5, 2014

Autism is not an illness: discourse and semantics

The discourse of Autism as an illness is a common one. Frequently used phrases such as “suffers with Autism”, “lives with Autism” “child has Autism” perpetuate this discourse, as parents of Autistic children and professionals who work with Autistic people strive for ‘political correctness’. What they often do not realise is that their language is helping contribute to the ongoing stigma their children and clients will experience throughout their lives. 

The ‘Autism as tragedy’ discourse more closely resembles a vicious diatribe than any sort of helpful awareness effort. 

This is something that has been playing on my mind for some time now, so I am going to attempt to join the conversation and present my evolving views as I am continuing to learn the impact words have on how Autistic people are viewed. There will be a few articles on this over the next few weeks, which I will present as a series. These articles are by no means intended to be any sort of authority on this topic- I am an allistic parent learning about how what I do (and don’t do) influences my childrens wellbeing. I am not trying to teach here, merely presenting my thoughts. I openly welcome discussion on these articles, as I am always seeking to learn more, and would value the thoughts, particularly of Autistic people, on this topic. 

So, let’s start by looking at some definitions. 

Image description: image is text that reads
"illness |ɪlnəs| noun, a disease or period of sickness affecting the body or mind:
he died after a long illness
 | [ mass noun ] : I've never missed a day's work through illness."





sickness |ˈsɪknəs|
noun [ mass noun ]
1 the state of being ill: she was absent through sickness | [ as modifier ] : a sickness allowance.
• [ often with adj. or noun modifier ] a particular type of illness or disease: botulism causes fodder sickness of horses | [ count noun ] : a woman suffering an incurable sickness.
2 the feeling or fact of being affected with nausea or vomiting: she felt a wave of sickness wash over her | travel sickness.


ill |ɪl|
adjective
1 suffering from an illness or disease or feeling unwell: he was taken ill with food poisoning | [ with submodifier ] : a terminally ill patient | (as plural nounthe ill) : a day centre for the mentally ill.
2 [ attrib. ] poor in quality: ill judgement dogs the unsuccessful.
• bad or harmful: she had a cup of the same wine and suffered no ill effects.
• not favourable or auspicious: I have had a run of ill luck | a bird of ill omen.
adverb
1 [ usu. in combination ] badly, wrongly, or imperfectly: the street is dominated by ill-lit shops | it ill becomes one so beautiful to be gloomy.
• unfavourably or inauspiciously: a look on her face which boded ill for anyone who crossed her path.
2 only with difficulty; hardly: she could ill afford the cost of new curtains.
noun (usu. ills)
a problem or misfortune: a lengthy work on the ills of society.
• [ mass noun ] evil or harm: how could I wish him ill?
PHRASES
ill at ease uncomfortable or embarrassed.
speak (or think) ill of say (or think) something critical about (someone).
ORIGIN Middle English (in the senses ‘wicked’, ‘malevolent’, ‘harmful’, and ‘difficult’): from Old Norse illr ‘evil, difficult’, of unknown origin.

I could be placing too much value on the issue of semantics here, but I do love words and investigating their origins. I don’t think it is coincidence that words we use now to describe Autistic peoples lives are so negative. It speaks to the idea of normality being valued and divergence being seen as negative, harmful and something to be critical of. The origin of the word ill, for example, coming in two different languages from having implications of evil or wickedness should give us pause before we use it in reference to a persons way of being. 

And that is what Autism is- a way of being. There is an increasing body of research that tell us that Autism is a genetically based neurological divergence from the typical (here used informally to mean: what is expected because of the way the majority presents itself). This research now includes physical evidence by way of brain scans and other credible and reliable confirmation that Autism is not an illness. 

There is of course a growing body of other research (a lot of it based on survey and anecdote) that says Autism is largely a behavioural problem caused by environmental factors. The rule of confirmation bias says that if you are already more inclined to believe something the evidence you need to confirm your belief is the one you will attend to. I am in the interesting position of having studied psychology, been a consumer of psychological services, and am a parent to Autistic children and so exposed to all sorts of suggestions of the appropriate ways to treat my kids. So the information I am processing is from a wide range of backgrounds and schools of thought. This does not make me immune to confirmation bias, but being aware that I am subject to it I hope helps me to be more critical of my thought processes.  

I need to say here, too, that research- even good scientific research- has it limitations. For example, if research on Autism is only ever driven and funded by non Autistic people, all it will ever find out is what non Autistic people want to know and all it will ever confirm is what they think they understand. 

The voices of Autistic people must be heard in the conversation about what Autism is because they are the ones who live it, experience it and know without a doubt what it is. I think the best article I’ve read about what Autism is was written by Nick Walker. You can find it on his blog Neurocosmopolitanism

So, I come to the point where I’ve now spent years (about 6) thinking this through and am at a place where I can confidently say that despite having read lots of ideas from many perspectives in the conversation, and tried lots of the different recommended approaches to parenting Autistic children, I do not believe that Autism is an illness that causes suffering.

suffer |ˈsʌfə|
verb [ with obj. ]
1 experience or be subjected to (something bad or unpleasant): he suffered intense pain | [ no obj. ] : he'd suffered a great deal since his arrest.
• [ no obj. ] (suffer from) be affected by or subject to (an illness or ailment): his daughter suffered from agoraphobia.
• [ no obj. ] become or appear worse in quality: his relationship with Anne did suffer.
• [ no obj. ] archaic undergo martyrdom or execution.
2 archaic tolerate: France will no longer suffer the existing government.
  • [ with obj. and infinitive ] allow (someone) to do something: my conscience would not suffer me to accept any more.

Yes, Autistic people do suffer. The are subject to all sorts of bad and unpleasant things. Discrimination. Infantilisation. Bullying. Ableism. These things are imposed on them not by their own Autism but by other peoples reactions to them being Autistic. The way their brain works is not something that is inherently bad, nor is it something separate from them that can be removed to leave behind a ‘better’ them. I can cause my children suffering by failing to support their needs adequately or appropriately, but Autism does not cause them to suffer.


This is where the history of the diagnosis of Autism, popular treatments for Autism and the way parents speak about their Autistic children all have a large role to play in the discourse around Autism. These are the ideas I will explore over the next few articles. I hope you will travel with me over the next few weeks and explore these ideas as I present what I am thinking. Please do leave a comment if what I am saying sparks a thought for you. And thanks for listening. 

Wednesday, November 12, 2014

Privilege, politics, feminism, human rights

Julie Bishop, a high profile Australian politician, says women need to stop whining and get on with it.... she is talking about the gender inequality in society and the workplace. Her comments I believe were made in the context of a discussion around feminism.... which, as I understand it, is an issue of human rights. So, as someone who spends a good amount of time advocating for equal rights for all humans, I'd like to know which part of my life- which of my challenges- I need to apply her "stop whinging, get on with it and prove them all wrong," advice to. 

Maybe I could stop "whinging" about the fact that schools can't/won't make accommodations necessary for my kids to attend? 

Maybe I could stop "whinging" that the federal government, of which she is foreign affairs minister, is about to sign a trade deal with China that will likely mean my family can no longer afford the medications required to keep us all well unless either my husband works full time (which puts him under so much stress he can't manage without meds) or I find employment (which would mean the kids can no longer be home schooled so they'd have to go back into the aforementioned environment that won't accommodate their needs)? 

Maybe I could stop "whinging" about having a huge debt from my University studies that I'm unlikely to ever pay off because I am a women who chose to study 2 degrees in the hope it would make me more employable, but has less earning potential than a man because I am not a man, and also values my family life and the well-being of my kids so I haven't done much paid work in the last few years in order to pay said debt?

Maybe I could stop "whinging" about the fact that people will not stop looking at my family as burdensome and stereotyping us because some of us have disabilities?


This is a textbook case of a privilege at its ugly worst, with another well off white person totally missing the point about the very real challenges many of us face. It is not as simple as stopping whinging and proving "them" wrong. 

I... we... my family and I.... have been "proving them wrong", flying in the face of both statistics and stereotypes, for two decades now and I don't see any wealthy policy makers lining up to pat us on the back or help improve our financial situation. In fact, they are doing the opposite. 

Wake up and smell the dissent Julie. The rest of us don't have the privilege to be able to see this issue as simplistically as you do. We are speaking up about it, and your words in light of that are just plain insulting.

Saturday, November 8, 2014

Assumptions make a mess of things

I am married to a man who is diagnosed with Bipolar.  We have 6 children. One of them is also Bipolar and 2 of them are Autistic. One of our Autistic kids does his schoolwork at home by Distance Education, and the other we homeschool. Two of our kids go to local schools. The youngest is not quite 2 and home all the time. Things can be quite hectic around here. 

I generally don’t broadcast our struggles publicly because…. well, they are ours, and the kids don’t need to grow up to see me whining about parenting them all over the place when they grow up. But for the purpose of this article I’m going to go ahead and say it’s a tough journey supporting a large family with so many varying support needs. I do a lot of appointments- both for myself and for the hubby and kids. I do a lot of supporting and organising accommodations for different peoples needs. I also choose a level of involvement as an activist/advocate in the online community (sometimes in “real life” situations too). Most nights I go to bed thoroughly worn out and worried for the future.

Is my life harder than yours because I have family members with disabilities? Maybe. Maybe not. How would we know? You don’t live my life and I don’t live yours, so how do we tell who has a harder time?

You might think that because of the complexities within my family things are harder for me. Or you might think that your family is more difficult than mine. You might think that because I don’t complain much publicly I have it easier and my kids are not as disabled as yours. These are all assumptions that you are making based on what you think you know about me and my family. They are based on what I choose to present to you in this format, what I am happy for you to see. Some people I meet online like what I present and some don’t. This week alone I have received both encouraging comments and angry name-calling comments. 

My good friends know me differently than those who know me only through my blog. They hear about the really hard stuff and understand my struggles. They know my kids well and are generous about accommodating their needs. They are easy to be around, tolerating me at my worst and celebrating the highs with me. 

People in my wider local community probably have a very different view of me than my good friends and than people who know me online. They see me day to day going about my business….. shopping, school drop offs and pick ups and all that. I know that some of them think I am a grumpy person who doesn’t care much for other people. I know there are people who avoid me and there are things I don't get invited to because of this. I’ve been accused of nasty things and been called unpleasant names. 

They are working on the assumption that what you see is what you get. Because I don’t air all our family struggles publicly they assume I am rude or antisocial, rather than that I might just be having a full on week. They don’t realise that sometimes I am just plain too tired to do conversation with people I barely know, and that if I were to try, the only things on my mind that I would talk about are things they don’t understand and can’t relate to. 

They also don’t realise how lonely that it can be, constantly in a state where I have to ration out my energy by choosing who I make an effort to speak to so that I have the required energy to be available to my kids through the afternoon. I don’t fail to converse with people I pass by, or turn down invitations because I hate everyone and don't want to have a social life…. I do it because I don’t have energy most of the time to be able to manage small talk with people who don't know me and don’t want to know what my life is actually like. But people assume what they assume, and so on it goes. 

Which all sounds like a big whinge! I must admit it feels uncomfortable sharing this much here, but I am doing it for a reason. We all know someone who is supporting a person with extra challenges of some sort. Autism (and other neurodivergence and disability) is around everywhere, and here to stay…. so there are plenty of other people out there who feel the way I do. They might be parents of an Autistic child. They might be an Autistic adult. They might be someone who has a disability of a different kind. So I’m putting this out there to try and let people know….. assumptions make a mess of things. 

Please, if you regularly see someone going about their business who might seem a bit strange or distant, or like they are just keeping to themselves and there is no really obvious reason ….. or maybe you know they have kids with extra support needs, or have a disability themselves…..  don’t just assume they are unsociable or not interested in friendship. 

Say hi. Offer them the chance to chat. See if you can draw them out. Ask them if they need anything. Let them know you are there. Invite them to things and tell them you understand if they cant stay for long, but you'd love to see them, and offer them the option for you to set up a quiet place for their kid (or them) to chill if they feel overwhelmed. 

There are lots of things that you can do that can make all the difference to someone like me in forming and maintaining friendships. They aren’t difficult to do, but will make all the difference to me, or someone like me. Those things might be similar for each person, but will vary some too, so if you know someone like me…. ask them what they need to make it possible for them to join you at social events. Don’t be offended if they say no thanks, despite your efforts. Sometimes I just can’t, and it’s got nothing to do with anyone else…. I just need quiet time. 

But whatever you do, don’t assume. 


Everyone lives their own lives. We have no way of knowing who might have things a bit tougher than us. Be gentle. Be generous. Be gracious. Don’t assume. 

Friday, September 12, 2014

Is it ok to kill my husband?

trigger warning: 
discussion of murder, murder of children, murder of a disabled woman, suicide, excuse of murder, sympathy for murderers 


Dear Journalists and Members of the Media,

We need to have a talk. I have some serious questions to ask you, and I'd like to know your honest answers. 

Once again this week, I'm seeing violent murder....  4 violent murders, actually- 3 children and their mother ....... reported as a tragedy and with sympathy for the murderer. He was a pillar of the community. He was a great guy. He was so patient. He was under stress. He must have snapped. He must have been suffering, after all, he committed suicide. 

His wife had a disability

Maybe that is why we are reading your sympathy for him.

So, here are my questions for you:

If I kill my husband, who has a disability, is that OK

If I kill my 3 kids, who have disabilities, will you feel sorry for me too

Now do you see how dangerous what you are doing is? 

Do you realise that while ever you continue to empathise with murderers you put lives at risk?

Will you stop? Or will you keep doing it because it sells papers and gets ratings? 

Saturday, August 23, 2014

Who are the REAL experts? ... more on privilege

Earlier this week I wrote about privilege. We all have some. Some of us have more than others. 

This week I had opportunity to try to use my privilege in an effort to help some friends of mine. I'll explain what happened. 

I sometimes write articles that get published by The Huffington Post.
Twice recently Autistic friends of mine have submitted to them, and not been published. Because I thought the words they had to offer were valuable I have done a bit of an experiment with HuffPo and submitted my own articles, that carried essentially the same message as my friends article did- including direct quotes from these friends, with links back to their blogs where the posts are published- and my articles have been published by HuffPo.
So- here is my question to The Huffington Post:
Why will you publish the message of acceptance of Autism, and the message of the need for advocacy to support Autistics, when it comes from a non-Autistic person..... but not when it comes from an Autistic person?
Sadly, I think I know the answer. It's because as a non-Autistic parent to Autistic children I am afforded privilege that Autistic parents are not. 

You see, Autistic people are very much caught in a catch 22. Society has been told, and believes, that all Autistic people are generally less capable than non-Autistic people. This means that if they say something about parenting it is not as valuable or significant as if a non-Autistic persons words.... even when they are talking about raising an Autistic child. Then, on the odd occasion that an Autistic parent says something and people think it's great, somehow the Autistic person is now seen as less Autistic.... or sometimes even confronted and accused of lying about begin Autistic (yes- this happens).... and their view point is again put back in the position of less valuable. 

Let's really have a think about the wisdom of listening to non-Autisitc people as our primary source of information about Autism. 


Above is an image that contains the title “Ask the REAL experts:” and has 4 pictures of female presenting faces(the one on the top left wearing a cute pink hat with ears), each with a speech bubble next to it. 
The first speech bubble says, “Would you get a tattoo from me? I mean, I know a lot about tattoos because I am married to a tattooist, and I even have a lot of tattoos. So, it makes perfect sense that you'd come to me to get a tattoo, even though I am neither licensed or experienced, right?” 
The second speech bubble says, “One of my besties has a pilot's license, so folks are going to let me fly them around in an airplane. Right?”. 
The third speech bubble says, “My husband is a nurse, so I can totally put in a catheter for you and administer your IV medications. OK?”. 
The last speech bubble says, “My boyfriend boxed in college, so if you need anybody punched out, I can tell you all about how to do it.”
Below the faces and speech bubbles to the left is the large word “No?” Followed by “Well, consider this: That’s pretty much what you're doing when you go to non-Autistic people to learn about Autism. And no, it won't be on your skin permanently, endanger your life or get you put in jail. But when you get the wrong messages and information and pass them on to your kids, you can most certainly damage them permanently.”
My thanks to Lei, Sparrow and Kassiane for their permission to use this image with their words and pictures. 

So, what do you think? Should HuffPo be favouring my voice on the topic of parenting Autistic children over the voices of Autistic people who have asked to have their work published by them? I don't. 

To be honest, I feel really conflicted by the fact that this happens. On one hand, I am glad they are happy to publish what I say when I do my best to let people know how much listening to Autistic people has helped me. On the other hand, it feels very, very wrong that the message that Autistic people have something to offer is only acceptable when it is filtered through a non-Autistic person. I am allowed, as a non-Autistic person to say "hey! I have something to offer here!".... why aren't they? 

After all, who are the real experts?