Saturday, January 31, 2015

Depression, discontent and the negative thought spiral

I don't see depression as a bad thing. To me, it is just a part of life. Something to be aware of and something to work with. 

When I am depressed I need to be aware that I require extra time to get things done, I need more time to process new information and to recall old information, I need to be gentle with my expectations of myself. My executive function is certainly compromised, and I need more sleep than when not depressed. I find all that manageable, and as long as my depression stays at a level where I find those things manageable there is no problem. 

For me depression does not mean I am sad or discouraged or even more negative overall, although I do find myself more irritable when depressed. But depression is not synonymous with sadness. I can still be happy and content, even when depressed. I can laugh and find joy in life when depressed. For me depression is not bad or even particularly dangerous. 

The thing that becomes dangerous for me when I am depressed is discontent. When I allow myself to focus on discontent, I find myself becoming easily overwhelmed. When I am overwhelmed I do not look after myself and remember to be more gentle and mindful with my expectations of what I can realistically get done in a day. 

If I allow myself to focus on discontent, it is very easy to slip into a negative thought spiral. Overwhelm keeps great company with thoughts of inadequacy, and is best friends with the thought spiral that starts with comparing myself with others. I am not on top of things, I am not supporting my family, the house is a wreck, I am not young enough, pretty enough, confident enough, organised enough, just not enough of anything. And so the spiral goes down down down, until I am so deep in it I can barely remember the things I can do well enough to glimpse the top of the funnel I just slid down. 

So, what is the solution? Well, for me it involves a few things. 

I am very careful with my words in public. I make a conscious decision to focus on the positive and avoid dwelling on the negative when it comes to reporting my own experiences. This is because I believe giving voice to the nagging negative thoughts reinforces them and gives them strength. That is not to say I don't ever speak negatively. I do. I choose my friends carefully, and have a couple of trusted friends who I know will listen with empathy and encourage me. I trust my husband to listen and to call me out if I am losing my way, sometimes firmly, sometimes with just a little humour. 

I am careful to recognise the early signs that I am in need of a break from social and emotional stimulation, and I take a break. Things that trigger me can be in real face to face life, or in real online life. I give myself frequent minimal social media days (not ideal for growing a blogging presence, but essential for my health!) and I ration out my local socialising hours as well. 

I am careful to do things just for myself. I love to be in the garden. I love growing things. I love breeding, raising and hanging out with my chickens. I love taking photos. All those things interrupt a negative though cycle so effectively and provide an opportunity for me to reset my focus away from discontent. 

While those strategies sound simple, and they are, they are not always easy. When you are caring for a large family with multiple extra challenges and a variety of support needs, focussing on self care is often the last thing on the list of each days "to do's". But it is so important. I don't claim to be perfect at this, but I am certainly a lot better at looking after myself than I used to be. Sometimes it helps to think of it as looking after my family by looking after myself- if I am not coping I am no use to them! Ultimately, though, there is nothing wrong with self care just because you care about yourself. Whatever self talk I need to use to ensure I do actually look after myself, avoiding wallowing in discontent and getting lost in negative thought spirals is crucial to me. If I can do that living with depression is not so hard. 

Image is a collage of 7 photos taken by me in my back yard. Top left is a basket holding strawberries and blackberries; bottom left is 3 red/brown chickens foraging in a spinach patch; large middle photo is of a black hen with 3 black chicks on grass; top middle is a black chick staring directly at the camera with 2 others in the background; bottom middle is an arrangement of flowers zucchini and strawberries, a ball of twine on a dispenser and some black metal scissors all sitting on some newspaper; top right is a yellow pumpkin flower showing from behind some green pumpkin vine leaves; bottom right is a black and yellow chick sitting cupped inside 2 curled hands.

Wednesday, January 21, 2015

Floating on the edge of depression

When I look back over the years of my young adulthood I can see clearly that depression and I have co existed for quite some time. 

There are periods where, in retrospect, it is quite obvious that I was depressed. It didn't occur to me at the time that my fantasies of walking out the door away from my life and never returning were symptoms of my lack of coping strategies. It didn't seem so odd to me back then to think how nice it wold be to fall asleep and never wake again. Fortunately the time I found myself counting tablets I had both the good friends to support me and the good sense to call them. 

There were times I battled on, sleeping in the day time while hubby was at work and the kids played and watched tv, then laying awake at night wondering what my problem was and why I couldn't just snap out of it.  

Years have passed, and depression is often close. I was for a quite some time using medication to help manage it. 

These days I can recognise the signs in myself and I have a plan and strategies I use to make sure I do not allow myself to fall back into the foggy hole that sometimes calls. 

It might sound strange, but there are days when the effort to take care of myself is great and the temptation to slide away for a while is strong. 

It's not that I like the fog, it just sometimes seems easier to go there than to fight it. I am careful to not get to close to the edge. I am careful not to flirt with it too much. 

When I notice the signs I am moving closer, I limit my social exposure, I don't push myself to maintain a perfect house, I make sure to write down the things that are bothering me so my mind can shelve them instead of lugging them around all the time taking up all my emotional energy, I talk to my psychologist, I hang out with my chickens. 

My Hubby knows that if he asks "are you OK" and I say "yes" when I obviously am not, that I am anxious but unable to give space to that lest it lead to a negative thought spiral I will get lost in. He tells me I can admit I am anxious and he won't push me to talk, and I believe him, but sometimes the thought of saying the words makes me feel like I will choke. 

My doctor tells me that when you live with a lot of stress reactive depression is a normal and understandable response, but that I have so much insight and I cope so well. She says it would be more unexpected if I didn't feel overwhelmed sometimes. And that might all be true, but the years have taught me that I cannot just snap out of it, so I must not get into it....  I must care for myself first. 

And so, here I am. 

Floating on the edge of depression. 

When I vanish online for a while it is usually because I must in order to avoid being in that place of having done too much. 

When I take too long to respond to a message or text, or when I fail to answer the phone, it is usually because I do not have the emotional energy to process a response. 

When I turn down an invitation it is usually not because I don't like to be around you, but because I simply can't manage to do anything other than care for my immediate needs and those of my family. 

When I seem aloof and a bit too much like I have it all together, it is often because if I give in to a negative thought process I know I will stay there for too long and not be able to pull myself out. 

Image is the view looking over a valley from a lookout.
The valley is completely obscured by thick cloud.
There are cliffs visible in the distance and
a tree overhanging in the top right corner. 
It is not an uncomfortable place here, floating on the edge. 
It is familiar and it is my normal. 
Depression is not something that is inherently bad. 
The realisation that I am here neither upsets or surprises me.
It just is. 


Tuesday, January 20, 2015

Autism is not an illness: The problem with the way we speak about Autism

After a bit of a break over the Christmas period, I'm back with the next in my 'Autism is not an illness' series. I'm thinking about the problem with the way we speak about Autism. What do I mean by "the way we speak about Autism"? First I'll say that when I use "we" I am referring to society in general. Let's look at some examples. 

Todays news headlines from a google search of the word Autism: 


Autism uncovered: Brains of people with the condition work in 'idiosyncratic' ways, claims groundbreaking study
The finding helps explain why some studies claim people with autism have more brain connections, while other research says they have less
Scientists say there are many brain profiles under umbrella of autism
This could lead to better diagnosis of autism and improve treatments





Circumcision ‘doubles autism risk’: study

Ballarat autism blogger threatened with death

Etobicoke mom embarks on walk to Ottawa for national autism strategy
Families fighting for diagnosis, treatment, facing crippling financial costs ‘simply not right’, she says


Maternal thyroid autoantibody and elevated risk of offspring autism


The US Is On The Verge Of An 'Autism Tsunami'



Rise in autism cases a growing challenge




Here is some of the explanation of Autism provided by Wikipedia:


Autism is 
a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and by restricted and repetitive behavior. It is distinguished not by a single symptom, but by a characteristic triad of symptoms: impairments in social interaction; impairments in communication; and restricted interests and repetitive behavior. Social deficits distinguish autism and the related autism spectrum disorders from other developmental disorders. People with autism have social impairments and often lack the intuition about others that many people take for granted…….. Etc. etc. etc. 



“Autism Awareness Australia”

tells us 

“Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. People with ASD have problems with social and communication skills. Many people with ASD also have unusual ways of learning, paying attention, or reacting to sensations. It is part of a group of disorders known as Autism Spectrum Disorders (ASD). In most cases its causes are unknown. Today, 1 in 100 individuals is diagnosed with autism.”

and in their promotional video uses phrases such as 


“More children will be diagnosed with Autism this year than with AIDS, diabetes and cancer combined”

“no-one knows the cause, there is no cure”

“Autism is stealing the minds and personalities of a generation of Australian children”

“30,000 Aussie kids have been kidnapped….. by Autism”

“Don’t let Autism have the last say in a families life”

while their video aimed at children and distributed to every school in Australia says 

“…it sort of seems like you’re in your own world…”,

“You can tell someone has autism if they… um… like, make weird groaning sounds.”,

“…not making very much sense, flapping their arms about…”




Do you see a pattern? I do. 

diagnosis   treatment   risk   
threatened   strategy   
diagnosis   treatment    
crippling financial cost     risk    
Autism Tsunami      
growing challenge     
disorder    impaired    restricted    
symptom   impairments
impairments   restricted   deficits
disorders    impairments     lack
disorder   problems   unusual
diagnosed    cause   cure
stealing 
kidnapped
weird

Now imagine all those things are being said in relation to you. About you. In front of you. 

Do you see a problem? I do.

I see a society bent on believing that being a bit different than the majority is bad and something that needs fixing. 

I see groups of self proclaimed experts , declaring they are helping, while  using shock and awe tactics and striking fear into people to get them to donate money. 

I see a media system selling stories of tragedy to the detriment of an entire group of people.

And I see parents buying the stories, claiming the fear and believing the lie. 

Entire industries exist to find ways to help parents cope with their terrible children and to figure out a way to prevent any more suffering like theirs.

And all the while the voices of the actual Autistic people are drowned out by this rhetoric and drama, when all they are trying to say is “we are OK just as we are and we don’t need you to fix us”. 


That is the problem with the way we speak about Autism. 

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.