Friday, June 12, 2015

Neurodiversity versus "The Mighty"

On the 28th of April this year I published an article called "the basics of neurodiversity, in my own words, with pictures". The article is now this blogs most viewed post. Being a little blog that means a grand total of 1551 views (cool number!!), which is not heaps, but I'm pleased enough with that.

Somehow, an editor at 'The Mighty' stumbled across the article and liked it enough to get in touch on 8 June and request permission to republish it. {In case you don't know about The Mighty I've included a link >> here << so you can see their website via donotlink.}

The time difference between The USA and Australia has meant that the discussions between them and me have spanned 8 days. While the person I was talking to was always polite and friendly, I've got to say that the process was rather frustrating for me.

In the initial contact the editor said The Mighty publishes pieces that celebrate disability, and invited me to let them know if I wanted to discuss details around publishing my article. I said I was interested.

In the next email I was asked to change my first paragraph. Fair enough, the original was rather specific to my blog, and changing it a bit would provide more context. I wrote up a new introduction and sent it off. All seemed well, I was asked for a bio and headshot.

The next message surprised me a little. They wanted to remove the image descriptions from my article. It was followed an hour later by another email saying not to worry, they would leave them in. I responded that I was pleased about that as image descriptions as they are useful to many people with disabilities. I was left wondering how a website like theirs could not be on board with such a thing already?

The next email contained a request for an official definition of Neurodiversity. I'm now going to start including full quotes of my communications with the editor.

The thing is that the Neurodiversity Paradigm is being championed mostly by a grassroots movement, so you won't find a lot of discussion on it outside grassroots social media like blogs. I am hearing more about it being included in academic discussion and a little bit of research, but it is still just catching on there, really. Blog posts are becoming widely accepted as valid sources of information, particularly in the area of disability studies. Disability Studies Quarterly regularly publishes articles that cite blog posts.

Nick Walkers writing (
editing to add that I had referenced Nick in my new introduction) is the best I've read on the topic, and is becoming widely accepted within the movement as the go to resource, and probably is the most accessible language, as once you start referencing academic writing the information tends to become inaccessible to many. Nicks definitive piece on the neurodiversity paradigm, the “Throw Away the Master’s Tools” essay, wasn’t originally a blog post. Printed in a book, cited in multiple academic works, and assigned in classrooms around the country. And getting reprinted in a textbook from Pearson, a major academic publisher.

On top of what I've already said, I strongly feel that requiring external referencing on a grassroots, owned by the people it talks about movement, is silencing those people and invalidating the work they are doing.


At this point I requested to see a copy of the article as I suspected it was being heavily edited.

A copy of the text of their edit was sent to me. This is my next message:

I notice you have removed a section at the end of the article. 

"The Pathology Paradigm includes the word "Disorder" in all the above labels (except of course the label "normal") and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal.
The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal.
Neurodivergence is something a person can be born with (e.g. Autism) or it can be acquired (e.g. a traumatic injury to the brain). Of course, if a persons neurodivergence leads to them being unwell, unable to function the way they want to, or in danger of any sort, there is no reason they should not seek treatment, or assistance and accommodations, in order to look after themselves the best way they can, but this is a decision that should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality."

This section is crucial to help people see the discrimination and challenges Neurodivergent people face in advocating for themselves. I realise there may be an issue with length of the article, but I suggest that at a minimum the following be included. 

The Pathology Paradigm includes the word "Disorder" in all the above labels (except of course the label "normal") and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal. The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal. Decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.

If this is not possible I would prefer the article not be published, as this point is such an important one. 


This is what The Mighty was happy to publish:

The Pathology Paradigm includes the word "Disorder" in all the above labels (except of course the label "normal") and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal. The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal. So according to the paradigm, decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.
With the explanation that the change was to properly attribute all facts.

There is a certain irony, don't you think, that they are attempting to edit my words to conform with a standard, within a sentence that speaks against doing the same?


My response:

I think it is pretty clear in my original words that the sentence sits under the previous one as being attributed to the ethos of the Neurodiversity Paradigm. I wrote the sentence to deliberately sit there and imply that I agree at the same time, and I am uncomfortable with changes being made to imply I, as the writer, am merely reporting on the issue. I am Neurodivergent myself, and prefer to leave the personal aspect in my article. I hope you can understand my insistence on this.  

And that was the end of that.

The editors at the Mighty feel that they need to distinguish between fact and paradigm, and that the statement "decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality" is too controversial to be included without the qualification according to the paradigm directly in front of it. They will not publish my work unless I agree to this edit. 

I sent the following response this morning:

That is a very disappointing outcome.

Aside from having spent a week discussing with you, it is frustrating to be told that my experience and beliefs are not valuable unless edited a certain way. When I, as a Neurodivergent person, write about myself I expect that I will do so without other people telling me which parts of my experience and beliefs are too controversial. If someone requests to reprint my work because they like it and think it carries an important and helpful message, I am not comfortable with them dictating to me which parts of the message are ok to speak and which aren't. I strongly object to being told that "decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality" is not a fact but merely an ideal being held up by a few people.

If you have seen my writing much before, you will know that I don't shy away from calling people and organisations out when they do things that are hurtful to the people they say they are helping.

The Mighty falls into this category. Your website says The Mighty was started to help people with disabilities. My impression as I look around the site is that The Mighty has become a website of inspiration porn that works to meet the emotional desires of parents of disabled children and does nothing to serve the needs, or even touch on the interests, of disabled people. How you can claim to be helping disabled people when you won't feature their unedited voices is hard to understand. 

image: a circle of brains each in it's own "head" circle,
each head is a different colour. Over the top of the brains
is a stamp that says "Not good enough for "The Mighty"" 
I don't care that The Mighty won't publish my article. I really don't. I did not approach them or pitch it to them. They came to me and asked to reprint it, then told me it wasn't good enough. That is what I care about, because you can bet I am not the only one they have done it to. 

I care about seeing someone claim to help or represent the views of a group of people, then censor and silence them when they speak out. 

I care about seeing a well known publication choose one angle, that makes them and their readership of parents feel happy and validated, but actively ignores and fails to represent all aspects of the story from within a group while they are claiming to advocate for them. 

Not only does doing these things hurt disabled people and contribute to the perpetuation of stigma and misinformation, it feeds parents of disabled people a diet of words that help them dwell on their own misery instead of empowering them to support and care for their children in ways that protect them from stigma and discrimination. 

The Mighty has a long way to go before it actually truly helps anybody. 

Thursday, June 4, 2015

Basics of Neurodiversity infographic



This infographic was made to compliment my article

the basics of Neurodiversity, in my own words, with pictures

This image is a shorter version that serves as a summary of the article.
Text that serves as an image description for this infographic can be found in the article, linked above. 

I am happy for people to share the image, but please credit me and link back to this article, or to my Facebook page when you do. If you wish to print the image or otherwise reproduce it for your own use, please email me (michellesuttonwrites@gmail.com) and request permission. I will be able to provide you with a PDF to use. Thanks.

Tuesday, May 26, 2015

Tired. Anxious. Almost not coping. Or almost doing well.

Some days I'm a weird mix of tired and anxious. I'm not worried about anything in particular, but everything worries me and it's hard to make a decision about anything. I'm not physically sick, but there is a queasiness in my stomach and a feeling in my chest. I am tired and foggy in my brain, but I don't want to lie down to rest because that it exactly when my brain will jump into action and I will feel worse.

On days like this I don't get anything done other than things I absolutely can't avoid. If the day is one with nothing much I can't avoid I manage to get through OK. If the day is one like today when I have to drop one child off early to school, one at the regular time, and one to TAFE, then take one child to a psychology appointment, buy food for dinner, pick up two kids from two separate schools, then organise dinner for everyone and still find energy to go to karate.... well, on days like today I find myself sitting in my chair at 5.15pm desperately in need of both a drink and a visit to the bathroom but unable to do anything until I have cleared my mind of the thoughts that are bothering me even though I really should be onto making dinner by now.

These are the days I actually feel like I have taken on too much and probably should not be a parent. No one is starving or in any danger, but I feel woefully incompetent.

It's 5.18pm and I feel like I could go to bed and stay there until morning.... but bedtime is about 5 hours away. And I felt like this 5 hours ago.

If I have more than a couple of days in a row like this I start cancelling things. I have to if I don't want to end up shut down for a few days. The house gets messier and messier. Dirty clothes and dishes pile up. If it goes on too long it takes me weeks to catch up.

Some weeks I don't have any days like this. Some weeks I have more days like this than not. Sometimes I have a week full of days like this.

Lately I don't really seem to catch up... or I almost get there and then I'm slipping again. Falling behind again.

It's 5.24pm and my body just remembered to tell me I am really hungry now. Still haven't been able to empty my mind enough to get up. It's a bit like I imagine a locked up computer would feel if it had feels.

If I make the mistake of looking at the calendar for the next day I can do nothing I know I'll feel worse because this is a busy week.

If I make a quick easy dinner instead of the one I bought ingredients for I will get through the evening more easily. Better still I can ask one of the older kids to do the quick dinner. Remembering I can ask for help is a skill I am still learning. Delegation is an important self care skill- note to self! Dinner sorted, now I can clear a space to think about karate. I like karate, it will be fine. When I get back the kids will be about ready for bed. I can go to bed early and ignore the dishes a while longer. I have plan. Now I can go to the bathroom and have a drink.

I feel like it would seem silly to others, but this is how my mind works and how my days often look. Tired and anxious, almost depressed but not quite. Taking frequent breaks to clear my thoughts so I can move on with the day. Almost not coping. Or almost doing well. Depending on how you look at it. Take a deep breath and smile. One foot in front of the other until I can stop.

It's not a crisis. I'm not stressed, or in pain. I don't need saving or even sympathy. It just is. 

My life.

I'm not complaining. I'm just saying. I think sometimes it's this sort of thing they are talking about when they say everyone is fighting a battle you know nothing about. I mean, sometimes they are talking about death or illness, or tragedy or big stuff. But sometimes it's this... just life for some people. I know there are others like me. It's not just my story.

I thought you should know.

Some of you need to know because you didn't know before. Some of you need to know that someone else understands. 

So there it is. It will be OK. 

Tuesday, April 28, 2015

the basics of Neurodiversity, in my own words, with pictures

I was asked on the weekend, "So, what is Neurodiversity about?".

Would you believe I've only ever written about neurodiversity before, not actually discussed it face to face with someone seeking to understand? But I was asked, so I answered. And I didn't have access to the internet to give links to people who explain it very well. As I was talking I remembered how much I love to get a visual of things as I take on new information. So, here it is.... 

the basics of Neurodiversity, in my own words, with pictures 
(image descriptions are included in the main text of the post)



This is Pat.

(image is a very basic human shaped outline consisting of a circle head and an upside down U line for the body, with the word "Pat" at the bottom)





image source

This is Pats Brain. 

(image is a black line drawing style brain- the left side looks like a basic brain outline, the right side is made up of a light switch, a clock, a cog, a spool, two circuit boards and a lot of tubes all winding around and linking with each other. This image was sourced on Freepik.com)




This is Pat with his friends. 
All Pats friends have Brains too. 

(image is a row of 6 very basic human shaped outlines consisting of a circle head and an inside down U line for the body, each has a brain  the same as image for Pats Brain above inside the head. Each person has a name at the bottom- left to right they are Alex, Drew, Pat, Lee, Jess and Sal)





No two brains are exactly alike. 
This is Neurodiversity. 

(image is the same as the one above, with each brain in a different colour. Alex is blue, Drew is green, Pat is yellow, Lee is orange, Jess is red, Sal is purple)



neuro- |ˈnjʊərəʊ|
combining form
relating to nerves or the nervous system

diversity |dʌɪˈvəːsɪti, dɪ-|
noun (pl.diversities) [ mass noun ]
the state of being diverse

diverse |dʌɪˈvəːs, ˈdʌɪvəːs|
adjective
showing a great deal of variety; very different

(image to the left is a rainbow brain circle made of 6 brains each a different colour)



Some peoples brains are similar enough that they behave in ways that are 
categorised and labelled. 


One of these labels is "normal", which in this context means something like: 
looks pretty much like the majority of people and can function in ways we expect people in our society to function without needing extra support. Sometimes people use the word "neurotypical" instead of normal (image to the right is a group of 
7 blue brains in a kind of circular arrangement)




Some other labels are
"Schizophrenic"
(image to the left is a group of 7 yellow brains in a kind of circular arrangement)


"Bipolar
(image to the right is a group of 7 green brains in a kind of circular arrangement)


"Autistic
(image to the left is a group of 7 red brains in a kind of circular arrangement)




"Epileptic"
(image to the right is a group of 7 purple brains in a kind of circular arrangement)


All these labels indicate Neurodivergence, that is, a deviation of a brain from the "normal". 
People labeled with these things (and others) are Neurodivergent. 

Not all neurodivergence is diagnosed, or even diagnosable. This means that not all people who are perceived as neurotypical are in fact so. I write about this in my article 'Neurodivergent NOS'. Neurodivergent NOS is a nonsense term I made up to represent people who identify as neurodivergent but are not diagnosed with a recognised neurodivergence. 
(image to the left is a group of 7 orange brains in a kind of circular arrangement)



The Pathology Paradigm includes the word "Disorder" in all the above labels (except of course the label "normal") and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal. 

The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal. 

Neurodivergence is something a person can be born with (e.g. Autism) or it can be acquired (e.g. a traumatic injury to the brain). Of course, if a persons neurodivergence leads to them being unwell,  unable to function the way they want to, or in danger of any sort, there is no reason they should not seek treatment, or assistance and accommodations, in order to look after themselves the best way they can, but this is a decision that should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality. 


Neurodivergence is neither "good" nor "bad". It just is. It is up to each neurodivergent individual to decide what help they desire. People who are part of the Neurodiversity Movement support and advocate for the rights of individuals to have those choices. 




Pat, Alex, Drew, Lee, Jess and Sal are comfortable with their individual divergences and their diversity as a group. They support each others rights to self determination, and they value the strengths they each bring to their group of friends. 

(image above is a row of 6 very basic human shaped outlines consisting of a circle head and an inside down U line for the body, each has a coloured brain and a name at the bottom of their body outline: Alex is blue, Drew is green, Pat is yellow, Lee is orange, Jess is red, Sal is purple. There is a colourful row of small triangular flags hanging above the group of people. Each flag has a letter on it. The letters together spell "NEURODIVERSITY")



Edit: this article has now been summarised in a one page infographic, available for viewing by clicking:

Monday, April 20, 2015

Neurodivergent NOS

There is a large amount of irony in the title of this post, of course. As anyone who understands the concept of neurodivergence will know, pathologising the way brains work is neither necessary nor desirable. 

The NOS is a reference to the medical diagnostic phrase ‘Not Otherwise Specified’, which is used to say ‘we think there is something not quite right with you but you are not quite wrong enough to be diagnosed with something specific in this category’ (my paraphrase). 

Neurodivergent, for those who may not be familiar with the term, is a word coined by Kassiane some 5 years ago on her blog “Radical Neurodivergence Speaking” that has become an important part of the language used to explain the Neurodiversity Paradigm. 

Neurodiversity is the naturally occurring variation in human brains. I’m not going to waste words here explaining the Neurodiversity Paradigm, mostly because Nick has already explained it very well. Please read his article Neurodiversity: Some Basic Terms & Definitions if you aren’t familiar with the concept of Neurodiversity. 

Even though it is actually a nonsense Neurodivergent NOS feels like the best fit for what I am about to write, because it accurately reflects the stage I am at in recognising my own neurodivergence and attempting to relate what that means, and how it affects me, to other people. 

Neurodiversity, the naturally occurring variation in human brains, is a fact that I doubt many would try to dispute. Most of us are happy to agree that we are all unique individuals. Acknowledging that, it seems strange that neurodivergence is not something that is valued, but there is much evidence that it is not. As a society, we value conformity, predictability and compliance way too much. The result of this tends to be that those who are noticeably neurodivergent end up categorised by medical diagnosis, given a label and placed firmly in a minority group ready for marginalisation.  

There is much value, though, in knowing your community, your tribe, those like you who will understand your struggles and your achievements. Labels are not “bad” as such. They can be quite helpful, especially in helping the marginalised find their place of support. 

But what of those whose neurodivergence is more than allows them to feel part of the mainstream but not enough to make them stand out enough for categorisation? 

The Neurodivergent NOS? 

This is something I have been wondering over the past year or so, as I explore what it means for me to be neurodivergent, but not diagnosable. I am a non Autistic parent to Autistic children. A non Bipolar wife to a Bipolar husband and mother to a Bipolar daughter.  An only sometimes anxious mother to a permanently anxious son. I can relate to many of the things they find difficult: sensory overload, depression, general anxiety, specific anxiety, the need for isolation, the feeling of not fitting in anywhere, difficulties with language processing, the need have things a certain way to cope with change. Yet their challenges are theirs and I cannot claim to know what their life is like. Their difficulties are significant enough to warrant diagnosis and extra support. Mine are not significant enough to meet any diagnostic criteria, and for much of my life I have not needed extra support ….. or so I thought. 

And this is where it gets a bit tricky. Because hindsight is a wonderful thing. And because there is no way to know what might if been if it had been different. But I can say for sure that I believe if I had known then what I know now I certainly would have responded to what my body and my brain were trying to tell me over the years about how I work and how I can best care for myself. 

I have known for years that I am prone to depression. Looking back I can easily identify 3 periods in my life where my depression dramatically interfered with my ability to function well, and countless times when my default position of floating on the edge of depression interferes with my ability to function in lesser ways. 

I now recognise that I experience sensory overload. I need regular 'down time' so that I do not feel overwhelmed by sound in particular, and by touch to a slightly lesser extent. 

I have a very very busy brain. I fixate on things and my mind won’t rest until I have dealt with whatever it is processing. I find resting difficult until I am exhausted. 

Although I appear confident and outgoing in person, and in writing, I am not particularly. I rely on some well practiced scripts to get me through social situations. I find being with other people extremely difficult. A day out with friends will need to be followed by a few days at home in order for me not to end up in a state of overwhelm that can trigger depression. That is not to say that I do not enjoy time spent with friends and family, I absolutely do! I am just saying that it comes at a cost. 

I ‘disappear’ and take regular breaks from social media interactions in order to look after myself.

Yet I have no diagnosis that explains all this to you. I can’t just say “I am this” and have you understand what I experience and what support I may need. I do not fit into a neat little group ready to be stereotyped, which is not a bad thing, but also leaves me without a specific community to belong entirely to. All I can say is that I identify as being neurodivergent, and be content to exist for the most part on the fringe of a few different communities. 

As a result of this I am noticing, and sometimes experiencing, a strange kind of othering. It occurs in a few contexts. I advocate for Autistic people. I advocate for Bipolar people.  I advocate for the rights of those in minority groups. I am neither Autistic or Bipolar, and because I don’t point it out openly people don’t think about which minority groups I am in. So, people assume that means I am “Neurotypical”. Neurotypical, or NT as some say, is a word used to mean that a person has a neurology that does not diverge from the societal expectations of normal. It is often incorrectly used to mean “not Autistic”. 

The accusation of neurotypicality is used as a silencing tactic. It is implied that a person cannot understand the difficulties, the discrimination, the whatever is being discussed, because they are not diagnosed with anything therefore assumed to be neurotypical. When I have experienced this, I have been consequently treated with something close to disdain.

The thing is I do not want to have to give a label in order for it to be accepted that there are things that I struggle with and would need extra time to process and deal with. I do not want to have to name a diagnosis to be considered credible when I talk about advocating for neurodivergent people. I do not want to have to justify why it is hard for me to do some things that others don’t find hard. I do not want to feel like people think it is OK for me to ask for accommodations for my kids but not for myself. I do not want to be looked down upon because I do not have a diagnosis to use as my credentials like a list of letters after my name. 

And this is the crux of the issue for me, and why I have chosen to use the ironic term Neurodivergent NOS to refer to myself. When someone says they are neurodivergent, no matter what that neurodivergence is, we should be able to support each other without requiring credentials to be displayed. 

As members of various minority groups we do all have some things in common. Does it matter if my neurodivergence is the same as others? Does it matter if my neurodivergence is labelled at all?  

Why, when so many of us are rallying against anyone being pathologised and othered, is there a requirement that people do that to themselves in order to have credibility? Why does it seem like some people think they are owed an explanation of who I “am” before they will accept that I can relate and may have something to offer? 

Why does it seem that unless you have a diagnosis you are expected to just cope? If we accept that we are all different, why can’t it be assumed that we will all have different needs? 

Maybe I am an idealist…. well, I know I am an idealist….  Maybe I am being unrealistic, but I think that we can do better than this as a community. 

I am Neurodivergent NOS, and I am comfortable with that. I do not feel the need to categorise myself any further. 


I am Neurodivergent NOS, and as that is all the explanation I am giving, it will have to be enough.  


Thursday, March 26, 2015

thoughts on selling my kids deficits to get them support

If there is one thing bound to make me feel foul it is a visit to the doctor for getting paper work done for Centrelink payment applications (for those not in Australia, Centrelink is the government department that administers welfare payments, most disability support payments require a doctor assessment).

In our family's case at this point in time, it is a necessary thing that we apply for financial support from Centrelink. My Wonderful Hubby works full time, but I am needed at home to support two kids educating at home and to be available around the clock as a support/carer for those in the family that that need it. We are incredibly grateful for the financial support we receive. Without it life would be so much more difficult. 

However.

I do my best on a daily basis to build my kids up and encourage them. I try to instil in them a sense of self worth and pride in who they are. I advocate strongly that they be seen as valuable just as they are, event though they need some more help than other kids their age. 

When I have to fill in the paperwork to apply for financial support so I can continue to be a stay home mum, I am faced with page after page of needing to sell my amazing children's deficits. 

I have to tick the boxes that expose all the areas in which they struggle the most, make them sound like burdens, tell the part of their story that is negative without any indication that they are a real person with real feelings and real value. 

I have to do this with my kids sitting there, because the system requires that the doctor fill in their forms for the application after seeing my kids. So they get to hear me do this story telling. 

My older kids have to contribute to the story telling. It's a kind of enforced self shaming that they are supposed to just accept as a regular part of life if they want help. 

I know it is a means to an end. I know this is what I have to do to get them the support they need. 

But it makes me feel like a rotten traitor every single time I have to do it. 

And I can't help feeling it is not necessary. We don't force non disabled people to have regular sessions in which they are expected and required to confess all their struggles and failings to a gate keeper of all assistance. 

I'm so tired of it. 

But we are about to embark on a new round of appointments and assessments for my nearly 16 year old, because now that he is about to be no longer a child (??????) apparently he magically should need less help. Except he doesn't. In fact, in his case he has needed more help the older he gets. 

So, we get to go and prove that to clerks who have the power to decide if he can have help. We get to tick boxes with number codes next to them that are supposed to give a realistic idea of what life is like for him every day. 

Never mind that the forms are geared toward people with physical, intellectual and psychiatrist disabilities- none of which Autism actually is. 

Never mind that the things that actually disable him aren't really caused by Autism at all, but rather by societies unwillingness to make small accommodations for anyone who doesn't meet the unspoken and constantly changing set of arbitrary rules defining what is acceptable. 

And so goes my rant. I could continue. I won't. I need to pull my thoughts together and get back to focussing on what actually helps us. 

But I will say this. I wish with all my being that I didn't have to sell my kids deficits to get them the help they need. 




Wednesday, March 11, 2015

the problem with "There's a little bit of Autism in everyone"

"There's a little bit of Autism in everyone" ?

The problem with that statement is that it completely disregards and minimises the lived experience of Autistic people.

I'll try to explain.

I think the comment comes from another problematic statement: "Autism is a spectrum" which, from what I can tell, most people seem to think means some people are only a little bit Autistic and others are a lot Autistic. Not true. Autistic people are all Autistic and may have some challenges in common and some that differ than others. (Like all people, yes? I mean, not all women live the same lives....)

I guess assuming that some people are only a little bit Autistic lets us feel we can relate to Autism in some ways. But is that our place?

Lets take sensory overload as an example. Sensory overload is not something that only Autistic people experience. I am not Autistic. I do experience sensory overload sometimes. My daughter is Bipolar, not Autistic, and she experiences sensory overload sometimes too. Which means, in some small way, we can relate to an Autistic person. I don't see that as a problem. It's OK to say to an Autistic person that you can understand a little about what it is like to experience sensory overload, if you do.

But that does not mean you know what it is like to be Autistic and it does not mean you have a little bit of Autism in you.

Here's another way to look at it. My daughter is Bipolar, and experiences depression sometimes. I experience depression sometimes. I can relate to some aspects of my daughters experience. But I do not know what it is like to be Bipolar, nor am I "a little bit Bipolar". I just know what it is like for me when I am depressed. Some of that may be similar to what she experiences, some of it is not. If I claim my experience with depression means I know what it is like for her to be Bipolar, I am dismissing her lived experience and making light of her challenges.

Same thing.

If someone says they think everyone is a bit Autistic they are dismissing the lived experience of Autistic people and making light of the very real challenges they face living in a world that by and large does not accept them as valuable and is not set up to support their needs.