Warning April is coming!

It’s that time of year again. April fast approaches and with it the scramble to not so much become aware of autism but to be seen to be aware. Like any condition where being aware of it is “cool” there will be the usual Facebook things. For autism for whatever reason the colour of choice is blue. Like cancer awareness, autism awareness is an industry in and of itself.

You can buy blue accessories to show the world how aware you are. Along with any other number of things that really don’t do much for actual autistics at all. The foundation that shall not be named (I have chosen to treat this especially noxious group much like Voldemort is in the Harry Potter universe) will make a very hefty sum of money in April as will many other groups.  The raise money for autism trend is spreading so you can buy all sorts of things where a portion of the profits go towards something autism related. The rest of the profits of course are exactly that.

Perhaps the most controversial awareness thing right now though was a push to get people to spend two hours being silent with the premise that would give them an idea of what it is to be a non-verbal autistic. It was called The Six Degree Project https://www.facebook.com/TheSixDegreeProject . Proceeds from some dashing scarves – since you can’t have awareness without accessories these days go to the Canadian version of the foundation that shall not be named. While slightly less noxious than the original version that’s the easy thing to object to so let’s get that out of the way and tackle head on why this does nothing for autism awareness.

The ability to speak is only a tiny fraction of communication. It’s communication that is impaired in autism. Over-valuing speech as a component of communication or of autism for that matter is both bad science and a huge step backwards. The ability to produce speech is one of the more straightforward bits of communication. Some do, some don’t and some fall somewhere in between.  Autistics experience communication issues of a wide variety far beyond their capacity to produce speech.

Let’s look though at speech. There is a tendency to view those who are non-speaking as more autistic somehow or more severe. It’s a tendency not a fact. A tendency that some non-speaking people have challenged quite feriously.

This campaign is seen as very legitimate and heart warming because it is proposed on the Facebook page of someone who is not speaking. This alone is enough for people to label her severe. In the NT universe not speaking somehow grants additional autism credibilty whereas in autistic culture it is the quality of your ideas and how you express them that grants it. I once watched a documentary about someone I had known on a list serve for years and I had never actually known they didn’t speak. They were not viewed as less capable or more severe than any one else within our group. In fact they were one of the obvious leaders in the group that someone might pick out from the outside as being a leader.  It doesn’t seem to matter to the people describing this person as severe that she is able to post on Facebook or come up with these ideas. While that in itself has been debated I don’t see that as a productive path to go down. Never having heard of this person or project until two days ago I will stick to why a few hours of not speaking in no ways simulates being autistic.

My speech was delayed. A number of complicating factors make it hard to know how much of it was autism and how much was other reasons. In adulthood I consider myself unreliably verbal. That’s the strange thing about the focus on speech is whether a person is verbal or not is one of the first things that gets asked. It’s treated as if there are only two options despite the kind of issues I have not being all that rare that having obtained speech that speech might be unreliable is not discussed much. People say autistics think in black and white but so much about the condition is treated that way when we ourselves say that the reality is more complicated. I guess it’s understandable. If society puts a high premium on speech and attaches all sorts of meanings to the ability to do so that it doesn’t really have you don’t want to hear about the gray area. It’s a bit depressing isn’t it that someone could spend time in speech therapy, by middle aged and still have the ability to speak not be reliable. It’s usually there but there is that uncertainty. Uncertainty isn’t nice so who wants to hear that?

So back to the whole you can spend two hours choosing to be silent (while wearing an expensive blue scarf) and know what it is to be autistic. I have trouble understanding how it even makes sense. Clearly all you are experiencing is not talking. Not only not talking but choosing to not talk.

An actual autistic person might also be having trouble understanding what is being said around them, coping wth the speed with which things get said, if they understand the words many of the subtle things that actually make up the bulk of communication may be lost on them or require a great deal of effort to work out.

Communication is impaired for all people with autism and while progress may be made in various areas throughout a lifespan  it remains impaired to some degree by definition. For autistics communication will involve work and interpretation having to go on that the neurologically typical simply don’t experience. It’s taxing and exhausting and even if you can speak you may not be able to rely on that speech being available when you need it to be or even an option in some situations.

If you know you can’t speak and no one expects you to that’s a fair bit less stressful than unreliable speech. I remember the time before I spoke at all and the time I seldom spoke as relatively “nice” times by comparison to having to react to the sudden absence of a capacity people think I have. It usually departs in reaction to stress but the build up of stressors isn’t always clear to me so occasionally I have been completely oblivious to the fact it was about to fail me. The sudden inability to speak has risked my health at times, and having to factor in that this could happen to a careplan skews how people view me.

Still as stressful as that is that’s only one aspect of my autism. Only one aspect of anyone’s autism. So if I was purely non-speaking and you were trying to become more aware of what my life is like just opting out of talking would barely scratch the surface.

How would you simulate having to guess if people were joking or not? How would you experience the feelings of shame and stupidity that sometimes happen when you guess wrong? The inability to tell if someone is mad at you or not? If you did speak people suddenly getting mad at you because of an issue with your tone of voice? If you were trying to simulate life for the unreliably verbal how to stimulate the panic and frustration when you need those words and they are not there or the rush to wrap up a conversation when you feel the stress building and suspect you will soon be without words.

What about the lovely experience which I have described before of people making assumptions about your intelligence based on the absence of speech? If you have never heard the care of yourself compared to how a vet cares for an animal you haven’t experienced life in these shoes.

That’s just a small sampling of communication related issues since speech falls in that category but it’s such a small part of the overall picture.

How about dealing with whatever combination of communication difficulties you have while simultaneously having to deal with being unsure socially, and overwhelmed on a sensory level.

Not talking is not going to make you understand the social isolation that accompanies autism. Imagine always observing a world that appears to contain people like you but never quite being able to “crack the code”. Never really understanding those people who look like you but move smoothly in the world, knowing what to say and do. Who seem meant for the planet you live on in a way you are not. No amount of observing them will make you one of them and that’s a painful thing to live with. No hours spent in silence will give you any understanding of this.

The people who are communicating their objections most clearly and most specifically about the project are of course autistic. Of course you ask? Wait I thought there was a communication problem with autism. I thought that was your whole objection that speech is a tiny part of communication which is a tiny part of autism. Yes. Which is why those who have lived their whole life with it understood that the communication issue was on their side will communicate the clearest. We know exactly what communication mistakes get made and for the most part try not to make them. So although generalizations are being flung about it’s not by those on the spectrum. For objecting we get to be told we are vilifying a person even though people have been very clear that it is the project we object to and not the person. A distinction that isn’t always made when people speak about autistic self-advocates. Those badly behaving autistics do get villified almost daily. We get to watch the consequences to their health and wonder what kind of world do we live in when some of that money those dashing blue scarves, and puzzle ribbons and all the paraphenalia with which people have proclaimed their autism awareness goes to support attacks on adults with autism. So we are all very careful to say it’s the project not the person we are objecting to but our caution is not noted. We have failed to follow the agenda.

If you read the thread on the Facebook page you could actually get a better notion of what it is really like to be voiceless. To be voiceless is not the same as to not be able to speak because what you see on the page is a lot of politely written, careful to not insult the person, messages about why this is inadequate and what you see over and over again on the neurologically typical end is the kind of will-full fingers in the ears la-la-lala we can’t hear you,  that is the true root of our voicelessness.

Autism is in industry and nothing threatens that industry quite as much as listening to those who actually live it. Those who live it and won’t be poster people to raise money for an agenda we don’t support.  It’s not an inability to speak or even a communication issue with the autistic person that leaves us without a voice in the month supposedly about us. It’s that people only want to listen to a handful of pet autistics. Those that best fit the image that raises the money. Those autistics that people can respond to with glib enthusiasm and purchases funding research into prevention of autism. They, you see, manage to be heart-warming while our blood goes cold in the face of the enthusiastic fund-raising supporting preventing more people like us. The well behaved ones appear to be being exploited but that’s only my opinion. I can’t know one way or the other anything about such a carefully managed presentation. Within the adult autistic community the internet has given us the ability to be a community and some of us have known each other a long time while new media bring new comrades to our lives, it’s a long fight overall. A fight to have an actual voice. Not because some of us can’t speak but because too many people don’t want to hear what is being said.

We know how this will end. April will march on with an unrelenting supply of events like this. Those of us who protest will be called names, and insulted. While we may say “nothing about us without us”. and may even be able to claim some victories on that front (quickly pounced upon by the Voldemort foundation of course) what won’t happen in the month of April is that more people will be interested in an honest version of life with autism versus cute blue accessories and the appearance of being autism aware.

Every one of us not toeing the April agenda set by the Voldemort Foundation will be told several thousand times how lucky we are to be able to express ourselves. Lucky? Way to dismiss the herculean effort that had to be put into that. Lucky when no one wants to hear it anyway? Lucky when the way it is used is sometimes synonymous with not being as autistic as so and so or not really being autistic?  Our right to speak about our experience will be questioned. How legitimately autistic some are will no doubt come up. That the very reason we are objecting is precisely because some cannot object  is lost on those who feel the need to remind us of this. I was about to say you wouldn’t trivilize and monetize other conditions this way but of course it happens with alarming frequency. Still it doesn’t get to happen about autism without at least some fighting back. That the majority view of the adult community will be largely ignored isn’t news to any of us. We’ve lived through a fair few Aprils since someone saw the cash potential in autism.

April will be a nice illustration of communication disorder in action for sure but not because people are mimicking the inability to speak. It’s always a nice show of a receptive communication disorder and with more than a week of March to go this April is not disappointing that way.

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43 thoughts on “Warning April is coming!

  1. Nicely said, gareeth, and great to see you again! I don’t know if you remember me (molybdenum, from the old a.s.a. days) but it was nice to see a familiar name here in the great cyber wilderness 🙂 Someone posted a link to this on our local group’s facebook page. Now I guess I have a bit of catch up reading to do here on your blog…I’d better get busy!

  2. I do remember you. The blogsphere is fairly new ground for me but as a lot of the action seems to have moved on I thought I should give it an attempt.

  3. Pingback: More about Autism, this time from an adult with autism | Parenting And Stuff

  4. I am glad you took the time to read the blog. I think it takes a lot of courage to publically admit when something changes your mind. I think the only important thing to know really is how to take on new information and consider it which you clearly did. (I’m a she by the way but that’s not obvious from my nick name)

  5. Reblogged this on The Blurred Line and commented:
    It is Autism Awareness Month. This blog from Gareeth offers an incredible insight into the world of adult autism. Something spending an hour in silence can never come close to.

    “Imagine always observing a world that appears to contain people like you but never quite being able to “crack the code”. Never really understanding those people who look like you but move smoothly in the world, knowing what to say and do. Who seem meant for the planet you live on in a way you are not. No amount of observing them will make you one of them and that’s a painful thing to live with. No hours spent in silence will give you any understanding of this.”

  6. Thank you. I’m absolutely sharing this. Sometimes, folks try hard with good intentions, without considering how their intentions are perceived. Those of us who are raising people with autism have to learn to see both sides as we interpret the world back and forth. As you say, people don’t always want to hear what you’re saying – it’s hard to deal with reality when a concept is up for promotion, yeah?

    Thanks again.

  7. Pingback: Light it up Blue? – No | Emma's Hope Book

  8. Reblogged this on Being June and commented:
    This post about autism awareness month (April) is written by someone with autism. It gains speed like a freight train and, in a single post, the author raised my awareness like no “awareness month” ever has. Definitely worth a read.

  9. I have enourmous respect for the challenges parents face. I have seen how hard some of my friends try and the great lengths they go to for their children. The whole point in writing at all is occasionally something helps someone get a better understanding. I can appreciate that especially in a condition where some of the things that are taken for granted as being part of the package of having a child might be difficult or seem entirely absent that could be painful. I don’t sit firmly in the I am so glad I am autistic camp. Instead I have to say that it is both the best and worst thing about being me. It gives me some skills others lack but creates barriers to using those that makes life in the real world close to impossible too much of the time. I accept it and I know there is no cure for being me but in the darkest hours I can’t say I never wished I was otherwise. I stick to the belief I am as I was intended to be but since I shed enough tears over the impossible issue of why it was intended to be so difficult I can’t find fault with parents who express pain either. The line between this is very hard but it is the life I have and this is too hard gets blurry. I can hardly find fault when a parent expresses the very natural desire for things to be easier even if some of that expression winds up misdirected. I’ve seen people I cared about chase snake oil cures and support hurtful causes all with the best of intentions. That those actions are motivated by love I don’t question.

    It gets adversarial sometimes in autism circles. I’ve been bashed both my autistic peers for the time I spend on “autism mommies” and by parents at times but the only hope of an actually better outcome for the next generation is open communication.

  10. Reblogged this on j9sopinion and commented:
    The choice is BLUE. In case you weren’t ‘aware’ of this: it’s Autism Awareness Month in
    this fast approaching spring during, APRIL!
    BLUE? Well, blue is the choice color to swear to support your autistic community members. You could share this post, follow on facebook, or look up your local community organizations for detailed ways to get involved!
    ReBlog from our buddy over at ‘gareeth’–follow here on WordPress and ReBlogging to support those that you know with AUTISM.
    IT’S TIME TO MAKE THE WORLD AWARE.
    J9;)

  11. I really appreciate this post. I’ve not been directly touched by autism in my own life, but I’ve long been bothered by a number of awareness drives as I’ve often seen them as being more of an industry. I prefer accounts of others living with or having been directly touched by any number of things that are marketable things for awareness. That said, I’m largely unaware in regards to autism, but I tend not to be one to take things that are spoon-fed from one hour programs on television or brief articles in any number of media outlets. I live with PTSD and because of the country I live in, awareness about PTSD is very marketable right now given the prolonged and repeated tours of duty. Mine isn’t combat related, which is the primary focus right now, but the casual conversation and sweeping generalizations made from a place of fear and complete misunderstanding from those sporting pins or other accessories is rather disheartening. I’m finding that from a diagnostic standpoint, names of conditions are somewhat useful, but because a condition has a name it’s a generalization. Generalizations are very dangerous as they dehumanize the person who has or suffers from the condition and assumptions are made in place of actually knowing which specific pieces are at work for the individual. I’ve had a couple of opportunities where some very, very inaccurate assumptions were made about my life in general by people close to me because they skimmed a paragraph on wikipedia and saw something on a morning news program. They could have asked…. Either way, I appreciate what you’ve said here. I hope other people find their way to this post as well. I’m curious to know more, not from an observational place, but more from a compassionate place of wanting to understand. We’re all in this mix together. I hope this day finds you well.

  12. Reblogged this on Archaic Sugar and commented:
    This is an incredible read, so I hope you will take the time to do so. Sometimes listening “to,” those who inhabit out world, as opposed to listening (to things) about them or that represent them, is the most truth we can take away from something. And more knowledge of our actual neighbor illuminates the world in a whole different way. It just does. So I hope you’ll take a second. Thanks. 🙂

  13. Great post! Thank you for your honesty…you are a great communicator. Thank you for enlightening us on the fundraising scam. I say scam because the beneficiaries rarely get the help. This is true with most of them. Your post explains this well. I like this last part of your comment, “but the only hope of an actually better outcome for the next generation is open communication.” Ain’t that the truth!

  14. Pingback: I’m listening | Put Your Lights On

  15. Thank you gareeth, boy did you inspire me to write this morning. http://quantamama.wordpress.com/2013/03/28/im-listening/ I completely agree with you that the “only hope of an actually better outcome for the next generation is open communication.” I’m a little amazed how adversarial it can get in autism circles. Not sure why I was amazed, there’s a similar dichotomy in the blind community (my experience is with the Foundation Fighting Blindness and the National Federation of the Blind.) I’m curious if you have another suggestion for a more meaningful show of support than Six Degrees idea of not talking.

  16. I think anything that you thnk to do yourself personally that increases your awareness of autism overall is more meaningful. My community has an event entirely run by people with autism at the university for example. Whatever you choose to do ask questions about how much of autistic reality is this really making me aware of. If there is a fundraising component where does the money go. For those not in families directly coping with it perhaps you have some small way to make somene elese life easier. Invite a child on a play-date if that’s desired. Invite an adult to your house for dinner. Do some errands for a parent or have them over for coffee.

    I think extending a personal hand of support ultimately creates more awareness. The awareness I have of what it would be to parent someone comes from the times I spent at the homes of people with kids on the spectrum and works within me to give me a clue of the time and energy and love that most put into the endeavour. Creating a mutually supportive environment and if you are not dealing with it personally in your family, helping to create an environment of inclusiveness for those on the spectrum and their families are all positive steps forward.

  17. Thank you for speaking out for people with Autism I asked my son did he wish to write something about autism to share at school, he replied “No thanks Mum.” He says he would never change his Autism it is who he is, (8 year old) but he would like to give some of the the kids his sensitive ears for a day and see how they handle it. I guess for us it is empowering him with the confidence to say yes he is different and thats pretty cool. I think the world needs to understand each individual has challenges, yet they are all unique. We look to educating people around us one by one and hope the world can listen with open ears.

  18. Wow. You are intense! Love so much of what you say. I have a child with Down syndrome who speaks very little, even though he seems to have all the ingredients for successful speech. We’ve learned the difference between speech and language. He’s got language down – it’s just speech that’s so elusive. It seems like speech is our benchmark for so many things in our culture. Language and communication is just a whole lot more than speech. I also loved your comment above – especially that last paragraph. Donating money or buying a lightbulb doesn’t do squat as far as heightening a person’s awareness of what autism or anything else really is. Perhapse we should just call it what it is – if you want to donate money, donate money. If you want to become aware or celebrate your awareness of autism, go spend some time with a person with autism, although I would hate for anybody to use a relationship with a person with autism as a way to satisfy their agenda of good-doing. If you know what I mean. I guess people should spend time with other people simply because they care.

    . I wish I could say I can wrap my mind around autism – I can’t. But thanks for being a voice out there. I enjoy your writing.

    Blessings.

  19. Gareeth!

    I read the above comment on you “getting grief” from wasting your time on Autism Mommies. Please, please, please, please PLEASE NEVER stop! Ever since you brought up the sensory issue with the utensils to me I have tried more finger foods with Jp and got him to eat three new foods this week! Three! I haven’t seen three new things in a YEAR.

    You are making our lives and our kids lives better by being the voice for the children that we are raising blind here. And not that Autism Speaks “voice” of “lets cure all of you so you can be like us” voice…a real one.

    You literally helped me in a way that no book or website ever has and I would hug you if I could!

    • I wouldn’t. The thing that helped me the most as a young adult move from desperately trying to be something I could never be and hoping to like Data “outgrow my programming” was actually the realization that my experience was useful. However hard it has been and still gets having the ability to communicate makes it seem very much a responsibility.

      When I was young a teacher expressed on a poetry assignment the value of turning pain into beauty (it was after all a poetry assignment) but then setting it free for the world to share (which is an act of courage I never did get to with poetry) but with autism it’s not all pain and the message isn’t always beauty but it helps me to cope and carry on when anything useful is derived from my experience. Which is just that. I feel so happy when something I have said has a tangible impact on even a child I only know virtually like your JP. I felt a little worried initially that my answer about my sensory issues and eating not having been a one time battle fought and won that it could be discouraging.

      • I actually quite love that. I wish more people understood the profound sense of self one can find from turning your own pain into someone else’s abilities. It is a heady responsibility to try and educate us all one by one but I and my son, personally, thank you for your efforts.

        While we as parents may not “understand”, many of us want to so desperately and it is a Godsend to find someone that will explain it in first person. I feel grateful. Thank you.

  20. I have often thought that there is a point at which being “aware” is lip service. Time to get on with the autism doing, the action. Supporting, helping, researching, assisting, loving, etc.

  21. What a wonderful post! My son has Asperger’s and I marveled at how much of what you’ve written applies to him in so many ways. I always cringe to see friends and neighbors, even family who get caught up in the “Autism Industry”. There is so much more to my son and how he experiences the world. I was also reading some of your comments and I just wanted to say that as a parent I can relate to your comments about it being both the best and worst part about who you are. My hope is that I can raise my son , who is 8 years old now, with the confidence to embrace the parts of his autism that make him stronger. I want him to know how to use those strengths when life gets hard and he is faced with the difficulties that he experiences as well. I have both rejoiced in his abilities and silently mourned the hard times I have to watch him endure. Thank you for writing this and for your insightful comments. As a mother this information is priceless!
    Stina

  22. thank you thank you thank you for writing this. As a parent with a child that almost never shuts up, it’s so hard to explain why he has such a communication deficit. He is at the mercy of bullies. He cannot explain to someone anything that happens to him. And just because he can jabber on for hours about super heroes, doesn’t mean that he’s being a bad boy when he can’t process a request from a teacher and articulate an appropriate response, or follow two step directions. Thank you for explaining this so beautifully; I can never get others to understand, but I think I will now.

  23. Gareeth, Thank you for your informative and extremely clearly communicated post. I have a college student who is autistic, and I must say, extremely communicative, verbally and otherwise, but still it’s a learning process on both sides, as it’s one of my first contacts with an adult who is autistic. As a person who tries to be open to all, I am mainly curious… From your descriptions, I feel that many of us imperfect humans (isn’t that all of us?) fall within the range of autism at times – that not knowing social cues, feeling at a loss for words, seeing others who seem to know how the world works, when we just don’t know why it didn’t all come with a manual… Thank you for letting me get into your shoes and I refuse to buy any blue accessories but awareness is key… so will do my bit there if I can.

    • Audrey by understanding that the learning process is two way you are ahead of many. A lof of the things that are classically identified as deficits in the autistic population are things where the understanding of what that looks like for an autistic person is just there. Communication is innately more challenging but at the same time as a result many autistic people I know communicate more clearly as they don’t make assumptions about what they understood or what someone might take from it. So it goes through the list of things.

      Of course I don’t actually know what it is like to be NT so there is a lot of guessing what may or may not occur to people.

  24. Pingback: Warning, April is coming! | It Works! by Jacquie

  25. Reblogged this on wanderingquilter and commented:
    Amid all the foundations clambering for our money, and the hype to wear a certain colort to show our support for one group or another, this young lady’s has given us in inside look at what autism is really like. Well worth a read. Thank you, Gareeth.

  26. Thanks so much for educating us on autism in a way we aren’t educated by the groups you indicated. Perhaps this “walking in your shoes” for a few moments will enable the rest of us to have more compassion and true respect for those of you who deal with these issues every day of their lives.

  27. Thank you for opening up your world for all to read. It has opened my mind and I won’t forget it.

  28. Pingback: What in the World is Going On April 2013 Edition // Autism Awareness Centre

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