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")


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.


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.