This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.
However, this has also lead to some very heated emotions. People are getting very frustrated with each other.
Misrepresentation
John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become. From: http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html
What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).
Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.
Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.
There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.
Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.
These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.
Is it really misrepresentation?
So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?
This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.
It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.
It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.
None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.
The true misrepresentation
So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.
Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?
I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.
I applaud those that speak up. It’s not an easy thing to do no matter who you are.
My only suggestion, take it or leave it, is to speak together… not against each other.
Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.
Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.
It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.
Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.
We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.
I would love to hear from you. Can we all work together? Will it ever happen?
I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’
I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.
It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed. In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.
So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?
Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.
It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.
I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.
Most of the time, Autism makes things much more difficult… even the most simple of tasks. But sometimes, in some interesting ways, it actually makes some things easier.
Routine
All children need some sort of routine… even if that routine is a complete lack of routine. Wait, does that make sense? Anyway, when things are predictable, children feel the most safe and at ease.
This is ever more so important with autistics. Think of it as… obsessive compulsive disorder with a photographic memory. Now, obviously, not everyone is to that extreme but it should give you a good idea of what some people have to deal with.
If your child can memorize the placement of 1500 items around your house and NEEDS them to be in the exact same place at all times… you may as well invest in super glue because those things are not allowed to move.
So how is this a good thing? Well, think about it… your child kind of forces structure into your life, whether you’ve had it or not. You will always know when supper time is, bath time, bed time… you’ll always know which movie(s) or book(s) you’ll have to choose from… you’ll always know where you need to be and when.
Ok, imagine this.. you have one child with Autism and one without. Nap time is at 2pm each day. At 2pm every single day, your autistic child runs off to their bedroom and gets mad if you’re not there to turn off the light. Your other child? (S)He’s in the living room screaming and crying because they don’t want to have a nap today.
See the difference?
Same goes for bath time, bed time… you name it.
When the clocks were changed for Day Light Savings time one year, my son had a meltdown because we tried to keep him up a little bit later to adjust him to that extra hour. He was mad because he wasn’t going to bed when his internal clock told him it was time to do so.
My other boy? He has a tantrum when it’s time to go to bed… at bed time!
School
Dropping off my autistic son at school, in the beginning, was easy. You take him in, he sits down, picks up a book or a puzzle or a toy and you walk out. He did what he needed and at the end of the day, he went home. He’d have the occassional meltdown, not listen or what ever… but the fact that there were other people, that we weren’t there.. that life was just happening around him, didn’t seem to matter a whole lot. (this is aside from the break in routine, as discussed above. He did not like the routine change, but I’m talking about how it was once school became a routine… anyway, I digress)
My other son, on the other hand, was super excited about school because his older brother went there every day. It was a magical land filled with friends and games and stuff to do and you got smarter doing it. However, when you’re 3 and your parents abandon you at the door and there’s strange people all around you… that perception of the place quickly changes.
I’m writing this mid way through November and my son still cries when we leave him at school… he started at the beginning of September. It’s not a routine for him yet. It’s not feeling safe for him yet. He has a lot of emotions going on and a lot of needs and, while is doing very well at school because he listens and does his work, it’s a bit heart breaking to hear him bawling his eyes out as I walk back to the car (don’t look back, don’t look back, don’t look back!)
Presents
My son with Autism told us what he wanted for Christmas in July. JULY! While that may not be all that surprising in itself, what is a bit of a shock is that it has remained and still is the same wish. See, most children want what other children have or what they see on the television or what they hear is the next cool thing to have… my son figures out what he wants and that’s it. There are no other options. In fact, you can’t even ask him for other options (“What else do you want besides that?”) because there is nothing else. He spends a great deal of time thinking about it, but comes back with no answer. He wants what he wants.
By the way, heaven help us if we don’t get that for him! Yeesh!
My other son… put it this way, when family members phone me and ask what to get for him, I say “I have no idea.” It’s not that I don’t know him, I do…. it’s just that his tastes change, his desires change and, this is totally just my boy, but he has no specific want.
When I ask him, he tends to say something that he knows his big brother wants… why? Because there is nothing specifically on his mind.
What I expected is that his mind would change from product to product as he sees them on television or passes them in the store, and to an extent that does happen, but once all that is removed and we’re sitting around the dinner table, he has no Christmas wish list in mind.
One, I know what to buy for… the other? Haven’t a clue!
Conclusion
That’s only 3 examples but this is getting long already so I’ll end with this… Autism truly is a disorder and as such, can cause much disorder. In your life, in your family… it’s a struggle and no one can argue with that.
But there are positives. There are some ways in which you can appreciate the good differences. Not just the savants, not just the lessons of life in being more appreciative and patient and loving… but also in just realizing that it’s not all doom and gloom.
Take the positives, no matter how minor or insignificant or trivial they may seem… and smile.
I’m not asking you celebrate with me as my son doesn’t care if I leave him with strange people or not… but smile. Because it’s different.
I’ve been wrestling with myself about whether or not I’d write something about Steve Jobs… everyone else is doing it, people must be getting tired of it by now… but I really, really…. really wanted to say this.
I am not a “fanboi”, as they’re called… meaning I’ve never stood in line to buy an Apple product, I have only ever had a couple of Apple products in my life. But that doesn’t mean that I can’t see the impact that Apple, and of course, Steve Jobs, has had on just about every aspect of our current lives.
Especially being in the Autism community where the Apple ipad inadvertently opened up the world of Autism to a whole new way of thinking.
But this is not a post about Steve Jobs or his products.
The answer to life, the universe and everything
If you’ve never read the Hitchhiker’s Guide to the Galaxy, I have to explain this to you because it’s a bit of a very interesting coincidence.
In the book, some super beings ask a supercomputer for “Ultimate Answer to the Ultimate Question of Life, The Universe, and Everything“, it calculates for 7.5 million years before reaching the final answer…. 42.
Why is this a coincidence?
The number of days between Steve Jobs retiring as Apple’s CEO and his death? 42
Working Living until the very end
by Lea Suzuki of the San Francisco Chronicle
The reason that his death came as such a shock to people is that, just a month ago, he was still at Apple, steering the ship.
That just doesn’t happen. You see, people tend to leave work once they get sick. They find out that they have months or even years left, they’re weak… so they step away and make the most of the life they have left.
Not Steve Jobs.
When I first thought about it, I admired how he worked right up until the very end.. or at least, a whole lot closer to the very end than most others would ever do.
I quickly corrected myself though, because the very fact that he was there until the very end was indication enough that to Steve, it wasn’t work. We already knew that though, in that he always professed to love what he did and told others to do what they love. And he proved it all the time.
Some would say that he was a natural at giving his presentations and a marketing genius… I think he just genuinely loved his work. He was proud. That sort of enthusiasm and excitement can’t be faked.
If all of that isn’t proof enough that he loved what he did… 42 will forever be proof enough for me.
He was there because he really was making the most of the life that he had left.
Do not do, be
In the short time since his death (less than 18 hours ago now from the time of my writing this), there has been a constant stream across all social networks of inspiring thoughts, phrases, paragraphs and even entire speeches of his and it’s truly great to see.
But all of these great things he said, he didn’t just say them, he didn’t just do some of the things he said… as many of us will try to do, he was those things. He lived it.
“Stay hungry, stay foolish” is how he finished his speech at Stanford in 2005. Inspiring words, great thought… but how many of us will live that way from here on out?
He did.
There are a LOT of very wise and inspiring quotes of his that I could list out here, the fact is… none of them will do you any good unless you live them. Don’t just agree with him, don’t just believe the words he says… live them.
Here is the video of that speech, please watch:
Here’s to the crazy ones
This commercial from 1997 was never aired. It was narrated by Steve Jobs and has the tagline “Think Different”. If this doesn’t give you a sense of how Steve Jobs’ mind worked… nothing will:
Why did Steve Jobs identify with the people in that commercial so well? Why did he deserve to be included with that list of people?
Because he lived it. He didn’t just say the words. He didn’t just believe it. He lived it.
Impacted our lives
I see a lot of people writing about how his products have impacted our lives, how his thinking has impacted our lives… what I truly love reading are the posts from Silicon Valley from people who became great people in their own right, because of how Steve Jobs impacted their lives far more than a new iPhone ever could.
I don’t need his products to feel his impact. And that’s the beauty of what he was able to accomplish and the true testament to who he was.
I want to live my life as he lived his… doing what I love. I want to do what I enjoy doing until my 42 comes.
More so than that, I want the same for my children. You see, Autism or not, I want my children to find what makes them happy and then to do it. But as a parent of a child with Autism, it’s even more paramount as one of the defining characteristics of Autism is that autistics can excel quite profoundly so long as they’re able to do what it is that they love.
Trying to force someone to conform, in other words, to put a square peg into a round hole, simply does not work. Not with Autism, not without Autism.
“Your time is limited, so don’t waste it living someone else’s life.” ~ Steve Jobs
His products changed the world.
His innovations improved our lives.
His lessons inspire us to carry that forward.
I thought I’d share a couple of examples of what conversations are like with my boys… both of these examples happened just this morning.
Conversation #1 – I want to be the grown up
While watching cartoons, Cameron saw an episode where the kids wanted to be the parents and the parents had to be the kids. As you can expect, it didn’t go so well. However, this idea intrigued Cameron enough for him to want to try it… his top priority, video game time!
Cameron: “Dad, we’re going to be the grown ups and you and mom will be the kids, ok?”
Me: “Ok, so you’re going to work all day long then?”
Cameron: “Yup, and you go to school… but then I get to play video games.”
Me: “No you don’t. After work, you have to make supper for everyone.”
Cameron: “but then I play video games?”
Me: “No, after supper the kids get to play video games… that’s me.”
Cameron: “but then I get games?”
Me: “No, after that, you have to give the kids a bath and then bed time.”
Cameron: “And then I get games right?”
Me: “No, then you have to do dishes, clean up and do more work and then go to bed.”
Cameron: “oh… ”
Me: “You might want to reconsider being the grown ups Cameron. Trust me, you get way more video game time than I do.”
Cameron: “ok ok ok… we’ll keep being the kids.”
Conversation #2 – Which colour is your favourite?
Tyler wanted to play trains with me after Cameron got on the bus, so he got a train he wanted and then wanted to be the big helper by getting me a train as well. Holding the blue train in his hand, he looks over at me….
Tyler: “uh.. Dad? What’s your favourite colour? Blue or…. red?”
Me: “Red.”
Tyler looks through the trains, can’t find a red one. Comes back to me…
Tyler: “uh… Dad? What’s your favourite colour? Blue or… orange?”
Me: “Orange.”
Tyler looks through the trains, can’t find an orange one. Comes back to me…
Tyler: “Dad? What’s your favourite colour? Blue or… purple?”
Me: “Purple.”
Tyler turns to the trains, gives it a quick glance and then comes back to me.
Tyler: “Uhmm… what’s your favourite colour? Blue or… pink?”
Me: “Blue”
Tyler: “No, sorry… you can’t have blue, this is my train!”
The true misrepresentation
