'Asperger’s, Autism, and Mass Murder', by John Elder Robison. The discussion post-Sandy Hook shooting

Last night I read with interest this piece posted by notable author John Elder Robison. John is the author of 'Raising Cubby', 'Look Me in the Eye', 'My Life with Asperger’s', and 'Be Different - adventures of a free range Aspergian.'

John is also member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services. He serves on the Scientific and Treatment Boards of Autism Speaks, the largest private source of autism research funding.

John grew up in the 1960s before the Asperger diagnosis had come into common use, and before 'autism spectrum' was fully understood. After dropping out of high school, he worked in the music business where he created sound effects and electronic devices, the best known of which were the signature guitars he built for the band KISS. Later, he founded Robison Service, a specialty automobile company. 

He wrote an interesting, thought-provoking piece for 'Psychology Today' titled: 'Asperger’s, Autism, and Mass Murder: Let’s stop the rush to judgment.'

"Whenever something horrible happens the public and the media look for answers... factoids to explain what may be truly inexplicable. Whatever information can be discovered is tossed out into public view in the hope that somehow a bunch of discrete facts and data points will somehow provide the answers everyone is seeking.

This happens whether the event is a catastrophic fire, a plane crash, or a mass killing. Thanks to the Internet, people all over the world speculate about what happened and why, often in the absence of any firsthand information. The result: a rush to judgment, and all too often - innocent people harmed.

Sometimes these early speculations are prescient. When reporters observed an aviation mishap and said, “the same thing happened on another flight a few years ago,” that report led to the discovery of a flaw in an aircraft’s design, and the potential saving of many lives when a design defect was corrected.

Unfortunately, on other occasions, early speculation proves unfounded, wrong, or irrelevant.  When that happens, innocent people are often harmed by the rush to judgment. I’m very concerned that is occurring right now, as the public digests news reports about the Sandy Hook school murders.

Reporters are saying the killer had Asperger’s Syndrome, a form of autism. Every time a news story does that – by tying “killer” and “Asperger’s” in the same sentence – they are at some level implying that there is a connection between autism and mass murder. There’s not.

Statisticians have a phrase for this situation: Correlation does not imply causation. Let me explain that by way of an example. Three banks are robbed, in three different cities.  Each bank had security cameras trained on the entrances.  In each case, a review of the tapes showed a white Toyota Camry turning into the parking lot, moments before the robbery.

Was that a clue? Was the same car used to rob all three banks? No. It was a random, irrelevant coincidence. In fact, white Camrys are one of the most common cars in the country and we might observe them at the scene of most anything, without any causative connection at all.

How about this factoid: Most school shooters are Caucasian males. You might find that statement a little more shocking than the previous one.  But it’s true.  Does that mean every white male Caucasian who enters a school is a potential mass murderer? Of course not

Suggesting a mass murderer had Asperger’s is much the same – it may be true, but stating the fact does nothing to explain the crime, nor does it help prevent other crimes in the future.   What it does do – and this is important – is paint a whole swath of population – Asperger people – with a brush that says “potential mass murderer.”

To continue reading, click here.

What do you think of the piece?

Life With Autism: 'Australian Family' magazine

I need to be very careful about the frame of mind I am in when I write a personal story... especially about autism.

Last time we went away as a family I had LOADS to say about how much I - frankly - hate the disease sometimes. Yep, that piece, aptly titled 'Ten Things I Hate About Autism' was definitely shooting from the hip and raw as.

You can read that piece here.

Same with this piece, in the current edition of Australian Family magazine, about raising a child with autism. [Here is the cover, scroll down for more]:

Turns out, there is no easy way to talk about autism... unless you want to be inauthentic about it all.

Here is an excerpt about my experiences with autism. Yours may be different, of course.

Life with Autism

Here’s the thing about autism – it’s like an uninvited guest you have to pander to, put up with, be a yes-person to, and find a way to get along with, even though nobody said they could stay at your home, eat your food, and mooch around all day in their comfy clothes, while infiltrating every element of your life.

Autism can be very rude, disrespectful, arrogant, and flippant. It can change its mind at a moment’s notice and be utterly unapologetic about it. Autism can ruin travel plans, destroy holidays, have no respect for your ‘date night’. And when you say in exasperation, ‘It’s all about you!’, it looks at you like you’re an alien, and replies, ‘Yeah… and? Problem?’

If it sounds dramatic, maybe you aren’t fully acquainted with this beast called Autism. It takes over every area of your life. In every way. And never says ‘sorry’ about the collateral damage.

Autism is defined as a neurodevelopmental disorder beginning at birth, or shortly after. The symptoms have been described as impairments involving delay and deviance in social and communication development, along with restricted interests and repetitive behaviours.

The term Autism Spectrum Disorders (ASD) covers diagnostic labels which include: Autistic Disorder, High Functioning Autism, Asperger Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).

Early intervention

Make no mistake: as passionate as I am about communicating about autism and its negatives, I am equally passionate about early intervention and finding out about every single thing I can do. That’s because  my son was diagnosed with mild autism spectrum disorder at age two (although I just ‘knew’ at age 1 and a half).

I am also very much about highlighting the positives, and talking about the very excellent aspects of autism. Yes, excellent ones. There are things about autism that bring about the very best in those who have this diagnosis, as well as in those around them, especially those the mums and dads of special needs kids – if you have a child with autism, you know what I’m talking about. You find a strength you never knew you had.

No, there is nothing half-hearted about my approach to autism. We have a love-hate relationship that infiltrates every fibre of my being. When we hate each other, we really, really despise each other. But when we love each other… nobody else exists in that moment. It’s an intoxicating love, the kind of love where you feel glad to know each other, and are grateful to be exposed to its intricacies and quirks; because you know you must live together in as much harmony as you can muster. After all, you’re stuck together for the rest of your lives.

When a child is very young and you suspect autism, it’s a critically important time for early intervention, which can powerfully shift the child's future life course. So, finding out as much as you can about each other early on makes complete sense. The more you know about its foibles – and the sooner you know – the faster you can learn to get along and identify the triggers of autistic behaviour.

The argument to encourage early intervention in autism centres around harnessing the "plasticity", or ability to change a young child’s brain, in the hope that the path of their neurological development can be redirected away from autism.

Having lived this for almost three years I can attest that early intervention has had a huge impact on my son’s progress and development. With the various therapies, and my own learning which I then apply to our interactions together, well… it has made a huge difference to all our lives.

To continue reading, click here.here.

What is your experience with your autistic son, daughter, niece, nephew, friend's child, or child's school friend? Please share.

Joshua and Sarah Littman: "Q&A" from StoryCorps

My friend showed me this recently...

This is what I love about being open about your child's autism diagnosis... friends are always on the lookout for links and news and articles. It's wonderful.

Watch and be moved by this actual conversation between a mother and her son, who has an Asperger's diagnosis.

Joshua Littman, a 12-year-old boy with Asperger's syndrome, interviews his mother, Sarah. Joshua's unique questions and Sarah's beautiful, unguarded answers demonstrate a beautiful relationship - and makes you so happy to be a parent of a special needs child, or otherwise.

Wasn't that wonderful to watch?

Oh, and if you're wondering about the different accents between mother and son, here's why:

"Hi - this is Josh's Mom. The reason is that he was born in the UK and I'm American. Even though he moved here, he kept his accent. It is apparently more common with children with Aspergers. These days (he's now 19) people think he is Canadian or sometimes Australian, which he finds really amusing."

What kind of conversations do you have with your child with autism?

60 Minutes Australia: iPad Apps for Autism

Did you watch the 60 Minutes Australia story on autism, and specifically, how severely autistic kids - and adults - can now communicate with those around them via particular autism apps on an iPad?

The story had me speechless during the entire thing... and then had me crying floods of tears afterwards, as my husband and I discussed what we'd seen.

"Compelling," he said. "Yes," I agreed through tears.

We then we spoke about how the past three years have been all about early intervention and meetings and more meetings and more goals set (and met!), and more meetings still, and yes, iPad apps. While our son Rafael can communicate, and speaks many words and complete phrases (he has a mild autism diagnosis) we have found the iPad an absolute godsend. We have watched on as he has quite literally had his brain unlocked, by learning how to communicate via this electronic tablet. It is wonderful to see.

(Here is a cute pic I just took of my boy on the iPad... he loves it).

And this story is equally wonderful, and hugely inspiring.

Here is a video link to the actual story, and below is the full transcript of the story:

http://sixtyminutes.ninemsn.com.au/article.aspx?id=8550313

Reporter: Michael UsherProducer: Phil Goyen

Imagine not being able to communicate with your own child, never knowing what they're thinking or how they feel.

That's what life's like every day for the parents of severely autistic children. And it's just as distressing for the kids who have no way of expressing themselves and often lash out in frustration.

But finally, there's a way. Just as computer apps have revolutionised our lives, they're also changing how autistic children interact with their world.

Now they're truly connecting with their mums and dads for the first time.

And if you think that's remarkable, consider this: world first technology has made it possible for doctors to see how autism affects the brain, providing hope that we'll one day find a cure to this most mysterious of conditions.

For more information on the The Lizard Centre, visit www.lizardcentre.com.

Full transcript:

GRACE: Hi, Mum.

ANNE: Hi, Gracey, thank you. How was your day?

GRACE: Good.

ANNE: It was good. How was your day?

ANNE: How was my day? My day was great, thank you. Good girl.

STORY – MICHAEL USHER: Nine-year-old Grace Masi has a lot to say.

ANNE: Excellent spelling, well done.

MICHAEL USHER: But frustratingly for her and mum Anne, she’s had no voice - until now.

GRACE: I want rice cake, please.

ANNE: You can have rice cake, what beautiful asking. For her not only to be able to read, but spell, and then edit what she wants to say, is really powerful. Oh, you want to play with the phone.

MICHAEL USHER: So she’s just punched in phone. She’s spelt that.

ANNE: Yeah, she just spelt that.

MICHAEL USHER: Grace is among the 30 per cent of people with severe autism who cannot speak. But she, and thousands like her, have had their lives transformed by computer tablets and specially-designed applications or apps. How much of a difference has it been?

ANNE: Oh, it’s huge. We’re seen her come out, we’ve seen her character, we’ve seen her cheekiness. You know, she’s a real trickster, and it just – she seems to have blossomed.

MICHAEL USHER: And she’s communicating with you.

ANNE: Absolutely.

MICHAEL USHER: She’s telling you what she wants.

ANNE: Yeah, you mightn’t always want to hear what she’s telling us, but that’s the same as any child.

MICHAEL USHER: As you’ll see tonight, groundbreaking technology is not only changing the lives of children, but adults as well. And an incredible new brain scan shows us for the first time what autism actually looks like. And it could transform therapy. Wow. And all this - it’s a psychedelic look, isn’t it? But these are all the cables of brain.

WALTER: These are all the cables. And this gives us an ability to look at that part of the brain and begin to understand what the meaning is.

MICHAEL USHER: There was no such technology when Joshua Hood was diagnosed with autism as a boy. So, for 25 years, he’s struggled to communicate with his mum Nancy, immersed in his own private world.

NANCY: If I could not understand it, he would search the room and he’d be like trying to see if there was a picture of what he was talking about.

MICHAEL USHER: You were communicating through charades.

NANCY: Through charades, yeah, and you know, can you point to it. It was like he was speaking a foreign language, and I was like, I don’t speak that language.

MICHAEL USHER: What day is your birthday? But two years ago, a window into Joshua’s world was opened by an ipad.

JOSHUA: August 25th.

MICHAEL USHER: That’s your birthday. The computer tablet, with its downloaded apps, did what so many therapists had tried - it gave Josh a voice.

MICHAEL USHER: Can you put in a sentence how much you like this ipad?

JOSHUA: Josh loves 1000.

MICHAEL USHER: You love your ipad 1000 - that’s a lot. That’s a lot. What does it help you do?

JOSHUA: Music class. Education room, music class.

MICHAEL USHER: It helps you with school.

NANCY: It was almost like that button you hit on the computer screen, and all of a sudden it was just kind of like, wow, I can communicate with him, and now he can communicate back to me, and we each understand what the other one’s saying.

MICHAEL USHER: You’re actually finally having a conversation with your son.

NANCY: I am. I am, yeah.

MICHAEL USHER: But the evidence is more than anecdotal or wishful thinking by parents and teachers. World-first research at this school in Toronto Canada is providing hard evidence that apps and ipads can unlock the hidden thinking of children with autism. The study has taken two years, and its success is encouraging to say the least.

RHONDA: It’s a massive breakthrough, because for the first time, these children can control their environment to an extent that you know, they never have been able to before.

MICHAEL USHER: Professor Rhonda McEwen from Toronto University has spent the past two years working with teachers and students here, carefully studying just how, and why, apps can be so useful for kids with autism. What is it about this device that breaks down that barriers, and lets these children communicate for the first time?

RHONDA: My research is showing that it seems to be the multi-sensory aspect of it, cause and effect that’s so immediate. I can use my finger to touch something and immediately there’s an effect.

MICHAEL USHER: Take a look at just how immediate it is, as young Jennifer is asked to identify numbers on the sheet of paper.

STACIE: Where’s number 1? Where’s number 1?

MICHAEL USHER: She’s distracted - can’t concentrate.

STACIE: Jennifer, looking.

MICHAEL USHER: Then, with the ipad, an incredible difference.

STACIE: Good looking, Jennifer.

MICHAEL USHER: Now Jennifer is holding her attention. So too with Wallace. His frustration with this wooden puzzle is palpable. But bring in the ipad and he solves the puzzle time and time again.

STACIE: Alright! You did it! It’s shocking. It’s jaw open, no words can explain, when you see someone do something that you didn’t think they could do.

MICHAEL USHER: Their teacher here at the The Beverly School is Stacie Carroll. What’s the biggest change that you’ve noticed when the kids start using these ipads?

STACIE: The biggest change is level of student engagement - how long I can hold their attention in a given activity. When you see a child who has a lot of behaviours and is non-verbal sit down at a tablet and correctly identify 20 nouns that you didn’t think that they knew, it reminds you to never, never make an assumption of what a person knows or what a person can do.

JASPER: I want pizza.

MICHAEL USHER: Have you been able to measure how much more focused and engaged these children are using the apps?

STACIE: After a month and a half, all of a sudden we had children who were attending for six seconds move to 20 seconds, and then to almost 40 seconds, and so it was a very fast exponential shift.

MICHAEL USHER: The ipads may not work for everyone, but they are changing lives in the most unexpected ways. Amanda Williams’ son Nathan was one of the children involved in the study.

AMANDA: What happened? Did you turn it off?

MICHAEL USHER: Watch as he matches vegetables, showing thought planning, and motor skills - something he couldn’t clearly demonstrate until now.

STACIE: That is huge. That’s a skill that would normally take a long time to try and teach a child with autism to do. It’s phenomenal, it’s phenomenal.

MICHAEL USHER: But what’s even more phenomenal is that since using the ipad, Nathan’s often erratic behavior - so typical of someone with autism - has decreased dramatically.

STACIE: The biggest thing is just in his demeanor. It’s made him much calmer. The tablet has really helped to calm him, and make him feel more secure and more confident, and that’s because it’s his. It’s his to control.

MICHAEL USHER: While apps are transforming the way people live with autism, new technology is revolutionizing our medical understanding of the condition. The University of Pittsburgh’s Dr Walter Schneider is using a computer program, developed primarily to help people with traumatic brain injury, to work out why so many severely autistic people can’t speak.

WALTER: So this is all the cables of the brain, we can go into and segment a particular cable.

MICHAEL USHER: These psychedelic pictures represent the intricate wires in a brain. And for the very first time, we can actually see what autism looks like. On the left is someone with autism, on the right, someone without. Look at that. Wow. It has a whole lot more of these fibers and cables going on.

WALTER: Right.

MICHAEL USHER: These particular fibers make it possible see something and then say what it is. But in this brain of a woman with autism, that connection between seeing and saying is a jumbled, wiry mess. The message gets lost in the tangle. Do you know where all of these extra fibers in her brain are going?

WALTER: We do know where they’re going in the sense of which piece of the brain. We don’t yet know enough about the brain to actually know what each of those pieces are.

MICHAEL USHER: The hope is, now that we can see autism, we will one day be able to repair it - by focusing on the damaged part of the brain and rewiring it through therapy.

WALTER: Autism is an extremely difficult situation for the parents. Many of them will go through decades of misdiagnosis. If we can get a biological marker saying your child has this subset of problems in the wiring, we have a much better handle on trying to do interventions, to give them some ability to communicate, and have a more normal developmental sequence.

NANCY: What would you like, Josh?

JOSHUA: I want a drink of Coke, in a can.

MICHAEL USHER: Back in Boston, Nancy and her younger son Jimmy would love to actually see which part of Joshua’s brain is affected. But for now, just ordering his lunch via the ipad is a breakthrough - unimaginable only a few years ago.

JOSHUA: I want fish macaroni.

NANCY: I never thought that anything was ever going to come along that you’d be able to get to communicate with him, that he would be able to talk to you and carry on a conversation. It was just -

MICHAEL USHER: You never thought that was going to happen?

NANCY: No.

MICHAEL USHER: Have you got any questions for me? I’ve been asking you all the questions, do you want to ask me a question?

JOSHUA: Cool guy.

MICHAEL USHER: Me? I’m a cool guy? Man, Joshua, you are the best, that’s the best thing that’s ever been said to me. Thank you very, very much. You know what, I think you’re a cool guy too. For so long, the world of autism has been a total mystery. Now, many questions are being answered, by the very people who have been locked in for so long. And for Anne Masi, and her daughter Grace, they can now explore life together in a whole new way.

ANNE: I’m proud of her, you know. Because her determination, and what she puts into each day, is massive, so for me it’s a blessing.

What are your experiences of iPads and electronic tablets, and how have they assisted your child's development? Feel free to comment below.

Unexpected surprises: this is autism

The most unusual thing happened today.

And yet, it seemed like the most natural thing in the world.

I was at a chemist, getting my mother's medication, my mum in law in tow. That's not the unusual part - that's totally normal these days.

No, what was confronting and strangely exhilarating was walking into the chemist, spotting a cute looking 8 year old-ish boy, hearing him speak no more than five words... and knowing immediately in my bones he was autistic.

I'd never seen this boy before, never met his dad who was now in the process of using the counting-before-you-get-in-big-trouble approach ["Ezra! Okay, that's one, two...] and yet I was so drawn to them I just couldn't explain it.

"Oh, so you use the counting approach, eh?" I asked cautiously, as I slowly sidled up behind him.

His kind face swung around. "Yes, I have to. Sometimes... it works!"

"Yes, I understand," I nodded. 

I asked Ezra's father - Anthony, I soon learned - how old his son was. Eight. Guess number one: spot on. Ezra soon surfaced from behind the shelves of myriad toothpastes, incontinence pads, and strange slimming teas and showed me his gorgeous, freckle-speckled face, and tufts of beautiful red hair peeking under his kiddie-sized fishing hat.

"Hello Ezra! Nice to meet you!"

"Hello! Nice to meet you too!"

We spoke just enough for a few exchanged pleasantries - with both Ezra and Anthony - until I couldn't contain myself another minute.

"I hope you don't mind I ask you this question," I started gingerly to Anthony, in a lowered tone, "But... is your son... autistic?"

He paused for one second, enough to read my face, and replied: "He's actually getting a diagnosis to confirm his autism tomorrow!"

His face was a mixture of 'how did you know?' and a distinct wash of relief.

He continued: "He's actually been diagnosed with ADHD for many years, medication to treat it, everything. But now he has a new paediatrician [lined up by Aspect Australia, he told me, excitedly adding that he somehow got in after a few months wait, not the usual two years] and we are finally getting the diagnosis I always had a feeling about. I mean, they can diagnose autism at age four now, you know!"

I nodded. "Yes, my son was diagnosed at age two - and I just knew at age one and a half."

Funnily, not once did Anthony ask me how I knew about Ezra, or why I was even asking. Not at any point did he tell me to mind my own business.

And I in turn felt a wave of relief for a man I had just met. I mean, imagine: the wrong diagnosis all this time... and now this. Finally.

And as I said my goodbyes and good lucks with it all [in another strange-for-me move I asked for his number, as I'd like to check in with him in a few days] I left on a unusual high. To feel a connection like that with a stranger - and to have him excitedly tell me how very talented his young son is ["in kindergarten, he was the only kid in his class who could count to 500!"] - was so special.

I recounted the whole story to my mum in law [who had been - rather hilariously - using one of those weigh-yourself-and-get-your-BMI machines] and she didn't bat an eye. She knows me too well.

Later, I thought to myself: gosh, what are the chances of something like this happening?

Well, I have learned that the chances of anything like this happening are high, if you: ask, interact, be nosy, and cultivate curiosity. In every situation.

And the biggest, best surprises of all always blossom right before your very eyes.

In fact, unexpected surprises are at the very heart of autism... in every possible way.

Target, Facebook, Autism, and how a feel-good story can turn negative, thanks to social media

Now this is an interesting post.

It demonstrates how social media can take a feelgood story - with all the right intentions - and mangle it, change its message, and give others the opportunity to cloud it with their judgement.

The positive thing to gain from this story is that it has brought to light that people with autism spectrum disorder are indeed active members in the community: they work, they contribute, they interact. Some have obvious quirks, some don't. [Or perhaps they are just better at concealing them].

Here is the recent post on the [US] Target Facebook page, by a father Jim Walter, who has a daughter diagnosed with autism:

Here are some of the comments:

Kenneth Snyder 

Yes, there are a lot of negative issues with Corporate America these days and Target is on the long list of companies that are not perfect. But must we become so posessed by cynicism that we have to mock the idea that a large corporation can do something right? There is no such thing as all good, but there's also no such thing as all bad. Yes, Target should hire the disabled because it is the right thing to do. But have you seen the real world lately? How many corporations do the right thing at all? If you have a negative opinion about Target, I'm not asking you to change it. All I am suggesting is that you wipe away the cynicism and negativity which is extremely toxic to the soul and at least open yourself to considering that Target is company you don't like but can still sometimes do the right thing.

Teresa Loffer I have a child on the spectrum and I too can pick out others as well, but there have been some who have surprisd me that I did NOT know were. The thing is, good for target. But let me say this. As a manager I had to repeatedly turn down a young man I suspected on the spectrum who was trying very hard to work for me. I had good reasons. I tried to tell him where I thought he SHOULD go to work. The people who I hire must be able to handle pressure, must be able to be SOCIALLY ATTUNED, and they have to work with NO SUPERVISION. As much as I'd have loved to have given the young man a job, I could not, in good faith, set him up for failure nor put my other clients in danger. It isn't a discrimination thing. It was heartbreaking to me to have to be that person to say no. But at the same time we have to also help our auties find the right jobs for them.

Darlene Smiley Hewitt I have a child with autism, and this story made me smile, and have hope! Companies SHOULD hire people with autism, they have many talents and could make very good employees, just might need a little extra help.

Lucien-Joseph Galloy That has to be the most pointless and irrelevant story ever posted here.

Darcie Merchant ‎@Lucien, I would much rather read an uplifting story about gratuity and love towards an individual with autism than about mass genocide in Africa. Besides, the "most pointless and irrelevant story ever posted" couldn't possibly be this. I mean, please, all the "sideboob celeb shots" have GOT to be in the Top Three.

Why do some people always take an incident that's supposed to be a positive tribute and turn it into something so negative?

Jamie Rose Hey I know I don't know you but. I work at old navy an we have an autistic girl that works for us. I was FURIOUS one day when a customer told me my associate was "annoying" her on the sales floor. My associate was doing all the same things I would do! I was so angry! Remember there are NO limitations just because of autism! Thanks for sharing your story

Darcie Kocan So he is a doctor than; therefore, he can diagnose someone because he has spent ten minutes with them in their line. Ok.

CrazyDave Fournier Darcie Kocan, way to be positive, him and myself must be doctors, cause I just diagnosed you with a case of the "way to be a bitc*" and sorry it looks terminal!!!!!

Nancy Harp Smith My son is also on the autism spectrum and is working at Best Buy. YAY for these companies who give handicapped individuals a chance, and YAY for the handicapped individuals who bravely face their fears and tackle the unknown to go to work each day.

You can read all the comments here: https://www.facebook.com/target/posts/10151145180098120?notif_t=feed_comment

And you can read the original Huffington Post story here: http://www.huffingtonpost.com/jim-walter/target-facebook-post_b_1847882.html

Ten Things I Hate About Autism

Ten things I hate about autism.

Yep, I hate them.

Because they rule my life, can make our lives hell, limit our options, cancel our plans. Of course I love my son - desperately, and with all my heart - but this thing called autism is something that has a laugh at our expense, thumbs its nose at social etiquette, and generally can make a scene in public. Those who don't know me or my son may mistake a display of autism as bad parenting and a spoilt child. To those people I say a very simple, very polite fuck you [hey, this is my blog and I can say what I like, dammit].

- Travel is impossible
I have tried to 'not let autism win', but this one is proving to be hard work. Holidays mean routines are broken which is enemy number one to autism. I have just come to the realisation that cancelling that overseas holiday earlier this year is now something we probably can't do for, oh, another decade.

- Fussy eating is taken to a whole new level
It's all about textures. Sloppy and messy is out. Crunchy and neat is in. Think rissoles with pureed veggies. Trying new foods is hard, hard work. And then there is the exception to the rule - he now loves custard [potentially a messy, and definitely a sloppy food]. And Maccas soft serve cones. I know, not healthy. But in our world, it's an eating triumph as it's a sloppy kinda food. My husband and I can watch him, fascinated, that he has mastered this skill all by himself without spilling a drop of soft, soft serve.

- Change in routine is murder
This includes going away of course, but even a change in route, or a change in direction when we are walking somewhere. This can trigger a temper tantrum. And once one of those starts: yeah, good luck with that sister.

- Language skills are hard work
This is an obvious one, but it really makes an impact when he is trying to express himself but can't. But his language capacity has increased, oh, about 1000-fold. This time last year he knew two words. Now I have lost count of the words and full phrases he rattles off, in context.

- Toilet training is a nightmare
We are still working on this one. Yep. It's so close, I know it. And yet, not quite there yet.

- Ownership
Everything he sees he now claims as his own: "My tunnel! My row boat! My phone!" Which means if we see a tunnel, he wants me to go under it [I don't - he needs to learn Mummy can't always change route for him]. If he sees my phone, he wants it now. And so on. This one is a new one. Hellllooo, autism - it's nice to meet more of your personalities!

- Sharing
We have worked long and hard on this one this year. This is crucial, because he MUST understand the concept of sharing with his sister, with his classmates, with society. We have made exceptional inroads here, but we have a long way to go.

- Socialising is a learned skill
He will play alongside others, sometimes include them, but mostly not. But this is a vast improvement on his old self, when he'd be oblivious to anyone around him.

- Eating out = limited options
I am appalled to say that after the healthiest start to life [hello, homemade concoctions like pureed liver and veggies], it's now Maccas only when we eat out. And only chicken bite thingys. Oh wait, he did have chicken schnitzel recently at a party at a restaurant. But it wasn't on the pre-ordered menu and I carved it up just so. And had to hand feed him as I could feel a food-refusal coming on. Health food gurus, please don't bother: we are talking food-as-pacifier at a whole different level here. And let's not even start on not being able to sit still in a chair for long periods of time at a semi-swank place. Impossible.

[At home is a whole different story, though - I rule the kitchen here and it's pureed zucchini and broccoli hidden in minced chicken breast, for example. It gives me so much satisfaction I could honestly cry].

- Haircuts can be hell
I can happily report this one has changed. But it has taken three years. It was only the very last haircut [husb has claimed haircuts as his domain, so full kudos to him] that involved no tears, and no tools to divert attention [phone, Nintendo DS, etc]. This was a MAJOR triumph - you see, sensory overload means scissors can feel like razor blades on his head. So you understand why this is cause for elation.

Autism is a curious beast, and I often feel at its mercy. And yet, other times I am utterly fascinated at how it manifests in the every day: untold affection, a brain that ticks in a different way, an outlook on the world which marches to its own drum.

So, you see it's not my son I dislike, it's autism. But 99% of the time it's hard to separate the two. But we are slowly learning to be friends, autism and I. We have to be. We have a long way to go and are bedfellows whether we like it or not. So yeah, hi autism. Welcome. Just don't steal all the blankets, okay?

My son - if you read this as an adult, please know I love you SO much...

'The Autism Enigma' - Four Corners. ABC TV.

Did you catch the 'Four Corners' episode tonight titled 'The Autism Enigma'?

Here is the i/view link: http://www.abc.net.au/iview/#/series/four%20corners

It is live for two weeks from today's date.

Here is a blurb on the show:

Four Corners presents "The Autism Enigma". Filmed in the United States, the United Kingdom and Canada the program looks at a controversial theory examining the possible links between harmful bacteria in a child's gut and ASD.

"The Autism Enigma" follows the work of an international group of scientists researching the human intestine and the clues their work might hold for treating and perhaps preventing this baffling disorder.

The film features the stories of two mothers with autistic sons. One, a Somali immigrant called Adar, has been working with scientists who are exploring why autism is more prevalent in her immigrant community. The other is Ellen Bolte, from Chicago, who began her own investigation to see if she could help her son who'd been diagnosed with autism. Using home videos she shares the story of her search for answers and the treatment she believes has given her son an opportunity to learn language, play and become more socially interactive.

"The Autism Enigma", produced by Christopher Sumpton, Robin Benger and Marion Gruner and presented by Kerry O'Brien, goes to air on Monday 27th August at 8.30pm on ABC1. It is replayed on Tuesday 28th August at 11.35pm. The program can also be seen on ABC News 24 on Saturday at 8.00pm, on ABC iviewand at abc.net.au/4corners.

For more, see: http://www.abc.net.au/4corners/stories/2012/08/23/3574441.htm

'Temple Grandin': closing scene. Tears - and hope.

I have been 'dying' to post this clip, from the movie 'Temple Grandin'.

I have been waiting for the right time. When my son graduates from pre-school? Or kindy, or... I don't know Year 6... or perhaps high school or university?

Turns out there is no right time. It's now.

Because with each and every Occupational Therapy session [every fortnight], and every weekly playgroup at Learning Links, and several hour-long meetings each month about setting new goals for Rafael, I realise we are inching closer to a day when Raf will stand up and declare himself like this. I don't know how he will do it, I don't know what it'll look like, but I do know one thing: I will be as moved as Julia Ormond [playing Temple Grandin's mother] is:

Watch the clip and you will see why it moves me - no, makes me shed floods of tears - each and every time.

CLICK ON THIS LINK HERE TO WATCH THE ENTIRE CLOSING SCENE.

'What Are You Doing?' A film about autism. This is MUST-WATCH

With news just in that the powerful documentary film 'What Are You Doing?' was yesterday distributed to over 10,000 schools [all primary, secondary, state, and independent schools] across Australia, THIS trailer is powerful viewing.

MUST-WATCH:

The people behind the film say:

We are so proud and happy to announce that our documentary film, "What are you doing?" was yesterday distributed to over 10 000 schools across Australia. All primary, secondary, state and independent schools have received a copy of the film, along with accompanying teaching materials. We thank the Australian Federal Government for their support in distributing the film.

So contact your local school, let them know how important the film is to your school community and encourage them to show it as widely as possible. More awareness simply means children on the spectrum will be better understood.

Whilst the film was made for children, we suspect a few adults within the school system will learn something from it as well!

The film will be available for sale to the general public next month. We hope to have the film available for international sale later this year.

http://www.whatareyoudoingfilm.com/

Life-changing for the autism community, I say. It all starts at grass-roots level.

Early intervention for children with autism - why it's important. Benison O'Reilly weighs in.

Early intervention in autism spectrum disorders is key - and many times I am asked how soon I had my son diagnosed, and how I knew he had autism.


They are two separate questions, of course, but very much interconnected.


My son was diagnosed when he was one and a half. I just knew and of course there were plenty of signs [more in a future post]. And what I also know now is that early intervention is incredibly important.


Just last week I chatted with my sons' daycare centre director about his wonderful progress, and at the end of our conversation she was quick to add how thrilled she was that I have always embraced taking on the advice of his early intervention educators, and being willing to work with his teachers at daycare.


For me, it's a no-brainer: I love my boy more than life itself and I will always do everything I can to help him reach his full potential. But gosh, it's so great to get that kind of acknowledgement.


In the first of many opinion pieces by author Benison O'Reilly for this blog - she co-wrote the autism bible, "Australian Autism Handbook" - she explains why early autism intervention is key.

"I’ll illustrate with a personal example: my son, Joe," says Benison.

"He’s now a big boy of eleven but was diagnosed with an autism spectrum disorder just after his third birthday.

"At the time of diagnosis Joe was assessed as having moderate to severe developmental delay, which was a polite way of saying he probably had a very low IQ. After 20 months of intensive early intervention we had his IQ reassessed. The result: borderline normal. Did my son suddenly become a lot smarter? Of course not—early intervention simply gave him the skills he needed to demonstrate his intelligence.

In simple terms, early intervention teaches children with autism how to learn. Given the choice, these kids prefer to retreat into their own little worlds, which are safer and less challenging. 


Good early intervention programs drag them out of these worlds, and teach them the 5 essentials: how to focus and pay attention, how to imitate others, how to understand and use language, how to play appropriately with toys, and how to socially interact with others.

Many of the problem behaviours we see in children with autism, such as tantrums and self-injury, are actually acts of frustration—frustration at their inability to communicate their needs. That’s why language is such a major focus of early intervention. 


The good news is, with early intervention, the vast majority of children with ASD will learn to talk.


Early intervention sets children with ASD on the right trajectory, a trajectory of learning that will last them a lifetime."

Adds Benison: "With very young kids they sometimes provide a provisional diagnosis which almost invariably goes on to become a proper diagnosis."


She refers to a point made on the Autism VIC website [now http://www.amaze.org.au]

"Diagnosis is usually made from the age of about 18 months onwards. Sometimes a provisional diagnosis is made when the child is very young and is reassessed at a later date."

Benison continues: "At eleven, Joe continues to develop new skills but the foundations were established when he was just three years old. If he hadn’t had that early intervention, who knows where we’d be?"

Benison's words are what I live by. My son is now four and a half and I often look back at how far he has come and I am so thrilled... I know in my heart that - although we have a lot of work to do - the best is yet to come.


For more on the blog for the book Benison co-authored with Seana Smith, go here: http://autism.janecurrypublishing.com.au/

You can follow Benison on Twitter here: @BenisonAnne

And the Australian Autism Handbook Twitter page is: @autismhandbook 

This is the "Australian Autism Handbook" cover - parents with a child with an autism diagnosis: buy this book.

What are your experiences of your child's autism iagnosis - at what age did you have him or her diagnosed?