Monday, December 31, 2012

Farewell to 2012


As we bid farewell to 2012 and indeed, to the final year in which Asperger's Syndrome has any official status in the DSM (Diagnostic and Statistical Manual of Mental Disorders), I thought I might take a moment to recap some major Aspergers and Autism moments this year.

Please note, that these are my own observations and as such they're subject to interpretation. Hopefully I won't offend anyone here by naming or using logos.






This year, as usual, I reviewed several books on Autism. It's hard to pick a favourite but I'd guess that it would probably be; Loving Someone with Asperger's Syndrome by Cindy N Ariel. For me, that one hit pretty close to home. I also really enjoyed "A Lifetime of Laughing and Loving with Autism" Compiled by R. Wayne Gilpin because it was full of positive real-life stories.

In fact, I read so many great books on autism this year that I decided to start a Pinterest Board. Check it out here.

Another great compilation, called We've Been Here All Along: Autistics over 35 Speak Out in Poetry and Prose was released later in the year. I'm probably biased because I have a chapter in it but personally, I think this was the most influential book of the year. It said so much and it arrived precisely at a time when the autism community needed it the most.





The "beautiful moment in Autism" of the year belongs firmly to Jo Ashline who in February wrote a post telling Autism to "Suck it". It was immediately replied to with a small voice which said, "did you just say that Autistic people suck?" and the whole thing just snowballed from there.  The beautiful moment came a few days later when Jo realised that there was a whole community out there who weren't there to fight with her, they were there to fight for her son. The autism community will never stop advocating for their own.






In May, one of my favourite advocates, Rachel Cohen-Rottenberg created a new site called Disability and Representation. Here, she not only provided some great and insightful articles but mostly single-handedly launched successful campaigns against several high profile people who dared to overstep the mark.  It's perhaps a tad aggressive for my rather meek attitude but someone has to do it and clearly Rachel is the person for the job.  Well done Rachel!  Your actions certainly hit the mark in the real world this year.






The Autism and Scouting group had a great year too with perhaps the highlight being a boy with Autism receiving the BSA heroism award for being one of the two key people involved in saving a boy's life.  A boy had become buried alive under 2.5 ft of sand and our hero with autism was able to locate the boys head by calculating the position.  Well done!  Also in the Autism and Scouting Group, there were lots of scouts with autism who received other awards.  It's so inspiring.

Moving on from Autism and Scouting, the founders of that site, the awesome John and Karen Krejcha founded a new initiative; Autism Empowerment this year. They've been doing a lot of work, have taken Autism to the airwaves and they also have some pretty impressive presentations online.





Then there's Special-ism, an awesome site which was put together by Danette Schott and Tiffani Lawton. They seem to have succeeded in uniting a group of special needs writers in a way which results in some fantastic articles. There were so many great stories on the site that I really don't think I could pick out any one as being my favourite.



Finally, the year ended on a very sad note with the suggestion that the Sandy Hook murders were due to Autism.  Fortunately, the community was on top of these remarks and various retractions were made and many broadcasters and newspapers made it very clear that there was no link between autism and homicide. It was also great to see Autism Speaks joining with Autism Advocates in what seemed to be the first time they agreed on something. I'm seeing this as a sign of hope and change.

All in all, it's been a very impressive and eventful year for the autism community and I look forward to seeing what 2013 will bring.

I'll be starting the new year off with an initiative aimed at putting the spot light back on the positives of autism and I hope that others will join me.

Sunday, December 23, 2012

Article: Managing Expectations and Reactions During Visits and Gift Exchange

My Latest Post on Special-ism, Managing Expectations and Reactions During Visits and Gift Exchange is now available and while it's mostly about Christmas, it's also about every celebration and family gathering.

Have  read of it here.
http://special-ism.com/managing-expectations-and-reactions-during-visits-and-gift-exchange/

Friday, December 21, 2012

Talking about Sandy Hook


I'm finally ready to talk about the Sandy Hook thing but it's not really a thing I'd normally discuss on this blog. You see, I like to stay on topic and keep all of my posts about Autism and Asperger's Syndrome - and Sandy Hook is about neither. Still, I guess there are some things which need to be said.

In case you don't know, Sandy Hook is the latest in a number of school shootings in the US. In many ways, it's being considered the "worst" because of the number of victims involved and their young ages.  In truth, whichever shooting affects your own family is always the "worst". There no ranking. All of these "crazy gunmen" incidents are bad.

Over here in Australia, where among other things, we have some of the most restrictive gun laws in the world, we're constantly shaking our heads at our US cousins who are ruled by powerful gun lobbies under a constitution which was written more or less to close to a period of war. Getting rid of the guns won't solve the problem. We still have gun violence but it's much reduced. Of course, since all of our borders are ocean, it's also much easier to patrol Australia.

When incidents like this occur, all eyes turn towards the perpetrators rather than to the victims. We spend time scratching our heads and trying to "profile" the killer as if this is just another episode of CSI. We look for patterns even when there are none and we try to pin these tragedies on minority groups because then we can say, "that person wasn't normal". We can convince ourselves that we're not all cold blooded killers waiting to snap.

I'm here to tell you that there will always be people like this in the world and that they won't necessarily fit a given profile. Even worse, although sometimes it's an illness, the truth is that we as a society are often responsible for them snapping.  Merciless bullying can often cause people to snap as can media exposure which makes these killer famous.  History has shown that there are plenty of killers and regardless of the availability of weaponry or the manner in which society locks up those deemed to be mad, the killers will often remain undetected and will strike when the time suits them.

There is no profile. These killers are normal people in abnormal situations.

This brings me to the reason I've posted this here. A number of people have seized upon the idea that the gunman had Asperger's syndrome. They've suggested that several other gunmen may also have had it.  They've decided that this is a common thread even though it's simply not true. Many of the other shooters and possibly this one do not have Asperger's syndrome. From here, it's a small step from panicking parents who ruin their children's lives with fear to calls for genocide. I've seen posts on Facebook recently suggesting that people with autism should be locked up or even randomly set on fire.

It underscores my point nicely. We're all killers. There is no profile and as evidenced many times in our history, the human race as a whole is always only one small step away from madness.

It's time for us to stop profiling and to stop looking for minority groups to pin the blame on. It's time to tell the media to stop contributing to the problem by sensationalizing the news and by publicly profiling killers. It's time for better gun laws, better services and better support for people who may be depressed or otherwise excluded from society. There is no one solution to the problem but many small steps which will help us make the journey.

In the meantime, we need to remember that tragedies are about victims, not perpetrators - and there are many victims. The victims of this latest madness are the students and teachers at the Sandy Hook Elementary School. They are the families and friends of these people. They are the children who are unfairly labelled as a result of mad profiling and they are the communities which are ostracized because we want to pin the blame on a minority.

Let us not make any more victims. Let's remember the victims we already have and then pick up our lives and move on from this tragedy. Let's show some human spirit and do the best we can to reduce he likelihood of further incidents while ensuring that we don't infringe upon each other's freedoms.

Together we can make a difference.

Friday, December 7, 2012

Book Review: Sensory Parenting: The Elementary Years by Britt Collins MS, OTR and Jackie Linder Olson.


Sensory Parenting: The Elementary Years 
School Years Are Easier when Your Child's Senses Are Happy!
by Britt Collins MS, OTR and Jackie Linder Olson.

Sensory Parenting: The Elementary Years is a sequel of sorts to Sensory Parenting: Newborns to Toddlers. To me it feels like a much more accomplished book - perhaps though, it's simply the fact that this one is far more relevant to my current situation.

Like its predecessor, the book focuses on finding ways around your child's sensitivities and it's designed for parents of children with a range of complications, including but not limited to, Sensory Processing Disorder (SPD), the Autism spectrum in general and Attention-Deficit Hyperactive Disorder (ADHD).

Like the first book, this is a collaboration between a mother (Jackie) and a paediatric occupational therapist (Britt). Somehow, this time around, their voices are far more harmonious and the switching between Britt and Jackie's point of view is far less jarring. Both authors have a lot of good material and the book is a breeze to read.

The introductory chapters cover the senses, going well beyond the five established ones; sight, smell, taste, touch and hearing to include vestibular (balance), proprioception (body awareness) and interoception (internals).  The book also lists developmental milestones and discusses ways that you can extend your child's social repertoire.

The book also includes insightful and relevant paragraphs from other experts in the field including interviews with various specialist OTs to discuss the range and use of their therapies.  There are also "OT tips" and "mom tips" scattered throughout the book.

The middle section of the book delves into specific sensory situations at home, at school, on holidays and in the world at large, with a chapter on each major area. Everything is very well labelled and helpful headers simply leap out at you.

The last few chapters cover sensory games, activities and therapies that you can use to desensitize and habituate your child. The book closes with useful appendices which contain relevant material from the first book on the use of pets as support animals and on dealing with food sensitivity in your child.

All in all this is an excellent book which I'd recommend to anyone with sensory children in elementary school (primary school here in Australia).  Of course, if you're an OT, then a copy is pretty much mandatory reading.

Sensory Parenting: The Elementary Years is available from; Amazon, where it's available as a paperback or a Kindle book, Goodreads and Future Horizons.

Honesty disclaimer: I was provided with a copy of this book free of charge for review purposes.

Friday, November 30, 2012

Echolia - should you try to stamp it out?


You're so happy that your previously mostly silent child is now talking quite a bit. Where, until recently there had only been grunts and one-word answers, now there are whole sentences, often offering what seems to be profound insights on life. 

It is only later, when you recognise the same turn of phrase, the same expression or the same accent, that you realise that all this time, he's been quoting from movies and TV shows. You feel cheated and your first impulse is to stamp it out. 

The question is; should you?

This condition is called echolia and it's very common in children and adults with Asperger's syndrome.

There are many books and specialists who say "yes", very strongly "yes", you should stamp this behaviour out. It's even suggested by some of the most progressive writers in the field.

I say no.

In fact, I'm completely stunned by some of the people saying yes and it's led me to think that perhaps Echolia isn't as well understood as I thought.

So without further ado, here are my reasons why parents should not try to stamp Echolia out.


Any communication is better than none.
There are many forms of communication of which talking is only a small part. Any reaction is communication; blinking, nodding, waving, speech, gestures... Even poetry; some would say "especially poetry".

I mentioned poetry because it's often a series of oblique phrases, similes and metaphors - very much like Echolia itself.

Echolia isn't just the random "blurting of phrases". Your child is thinking about things and is using phrases which suit the situation - even if you don't understand the references, it doesn't mean that they aren't there. That's why it all seemed to fit so well before you began to recognise phrases. Of course, there's still a random element to it. Some phrases and accents are fun to say and when that happens, it becomes yet another form of stimming.

Mainly though, Echolia is communication via the selection and repetition of relevant phrases.


Echolia is deeper and wider than you think.
We all start our first steps in communication with the repetition of sounds, such as "da" from our parents. Echolia is no different. It's still a form of "speech learning".

Sure, you've recognised phrases from the movies or TV. Have you noticed phrases from other places? Radio, books, past conversations? It's all there. Echolia is not the sole province of Hollywood. It's the repetition of carefully selected and relevant language from all sources - and it's a major form of learning.

Clearly, nobody should be suggesting that we take learning styles and opportunities away from our kids. Echolia provides important groundwork in social communication.


Shared Echolia leads to Deeper Communication 
My best friend and I used to have amazing and deep conversations at school everyday. We felt very comfortable with each other and our conversations often consisted entirely of  language"lifted" and tweaked from other parts of our shared history. Sometimes from texts we had studied like hamlet and Emma, sometimes from films and very often from snatches of past conversation. It was a deeper and more complex and fulfilling type of conversation.

It was only later when other mates would say; "you guys went on for ages and nobody else had any idea if what the &@"$! You were talking about that I realised that they really couldn't follow our conversations. I tried in vain to teach them but Echolia seems to be the province of few.

I really miss those conversations now because nobody else has the ability to keep up with me in that regard.

There is no doubt in my mind that Echolia reaches, and surpasses the level of complexity required to communicate ideas.


Not everyone will recognise it
Sure, you've discovered that your child is repeating phrases rather than holding "original conversations". You're his parent. You've known him all his life and you have a significant "shared history" in this regard. It still probably took you a while to figure it out though.

Most people with whom your child engages in casual conversation won't be listening for so long and won't have the same shared history. They may never realise that one side of the conversation is full of quotes.

As your child gets older and more experienced in conversation, you'll find that the quotes are increasingly modified to fit a given situation. Eventually they'll become mostly unrecognisable from the source material.

If others aren't recognising it and if it's giving your child the comfort and confidence they need to carry out conversations then I really can't see how it could be considered a problem.


Don't try to stamp it out - try to build on it for complete social success.

Wednesday, November 21, 2012

Article: Recognising Sensory Overload

My latest article; Recognising Sensory Overload, is now available at Special-ism.

http://special-ism.com/recognising-sensory-overload/

It's worth a read especially if you have a child who puts his/her hands over their ears frequently.


Wednesday, November 14, 2012

Book Review: "A Lifetime of Laughing and Loving with Autism" Compiled by R. Wayne Gilpin

A Lifetime of Laughing and Loving with Autism
New and Revised Stories that will warm and inspire you.
Compiled by R. Wayne Gilpin

It's hard to describe the gap that this book fills but it's a significant one. I've heard it described as "chicken soup for the soul for parents of children with autism".  It's not a turn of phrase that I'd normally use, but I guess it's quite accurate.

This book was one of the first positive texts published at a time when the world of autism was overwhelmingly negative. The world has changed a lot since then but I've still not seen a book which tells autism stories quite like this.

The book reads very much like certain sections of a women's magazine. In Australia, the magazine column is called "mere male" and it's full of stories about partners, family and children who misinterpret things with amusing or revealing results. This book is more of the same but this time with people on the autism spectrum.

Just like those "mere male" columns, there's no malice intended and clearly the individuals talked about are very much loved. Instead of malice, this book says "I can relate" or "that happened to us too!".  In some cases it makes it very clear that we underestimate our children with autism or the love that their siblings have for them.

In short; this is a book full of "magic moments".

There are funny stories, sad stories, shocking stories and best of all, poignant stories. There are amazing stories of things that good and bad teachers have said and done and emails from people on the spectrum which capture important moments and feelings.

Best of all, this is a book of hope filled with moments that you'll treasure and re-read over and over again.

Each story is very short, with most being only a paragraph or two. This means that it contains a large number of stories and that it's very accessible and easy to read.

A Lifetime of Laughing and Loving with Autism is available from Future Horizons - in fact it's the book which changed a father's life and opened the doors to the largest publisher of autism-related books in the world.

It's also available from Amazon.

With Christmas just around the corner, this is one of those books that would make an excellent gift for a family with a child with autism. A gift that simply says, "I understand".

This review was based on the 2012 edition and on materials provided to me free of charge for review purposes.

Wednesday, November 7, 2012

Book Review: "Ten Things Every Child with Autism Wishes You Knew" (Updated and Expanded Edition)


"Ten Things Every Child with Autism Wishes You Knew"
by Ellen Notbohm;
Updated and Expanded Edition 2012
Published by Future Horizons

This is quite an unusual book. It's not a practical guide to handling day to day issues with Autism, nor is it a dry clinical description of Autism.  It's essentially a book promoting a new paradigm, (a whole new outlook) on Autism. It provides you with an understanding of some key positive concepts and then goes on to show how they can be put into practical use on a daily basis.

I feel that this book could be better described with the considerably less catchy title of;  Ten concepts which your future happy and successful grown up child with autism needs you to know, understand, believe and "live" now - in order to ensure that the time line works out for the best.

Make no mistake, these aren't ten baby concepts which will only hold true for a small part of your child's life.  They're adult ones, mantras for living - and they apply forever.

The book starts with a list of the 10 things which I'll list below because there are no surprises here.
They're the names of the chapters and are prominently displayed on Amazon.

  1. I am a whole child.
  2. My senses are out of sync
  3. Distinguish between won't and can't
  4. I am a concrete thinker, I interpret language literally
  5. Listen to all the ways I'm trying to communicate
  6. Picture this! I am visually orientated
  7. Focus and build on what I can do rather than what I can't do
  8. Help me with social interactions
  9. Identify what triggers my meltdowns
  10. Love me unconditionally.

                  You'll notice that every one of these ten things is open-ended. Each topic contains a lot of important discussion material.  I won't say that I agreed 100% with everything but the later chapters put all of my minor niggles to rest.  Ellen makes it clear at the beginning of the book that all children are different and that not everything here will apply to every child.

                  This book spends quite a bit of time discussing the "language of autism" as it used by parents, media and support personnel. It makes it very clear that the way in which we express, embrace and encourage our children has monumental impact both on their self esteem and their future success.  Often we use negative language without realising it and the book provides some handy hints on how to detect and remove these negative words from our daily interactions.

                  If you've ever used a phrase like "my child suffers from autism", then you really need to read this book. Similarly, if you've said; "my child will never do that".

                  The subject of the book is Ellen's son Bryce and by reading between the lines, you can follow his journey from a child seen as a PIA (Potentially Independent Adult) to a fully functional, self-supporting adult.

                  There are some wonderful "bonus chapters" in the book including; "Ten things I want my high school senior with Autism to know" and a great chapter called Evolution which really presses home the problems of limiting language.  Finally, the book ends with some discussion questions which are really worth thinking about.

                  If it all sounds really technical, don't worry, it's not. In fact, it's quite an easy read at just under 200 pages and a really easy-going font but it's a book that will get you thinking and it's a book that could change your life.  It probably should be required reading for all parents of children on the spectrum.

                  "Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm is available from Amazon:
                  Note: the older 2005 version is available there too, and in a kindle version but I think that the changes in the updated version are significant enough that I'd recommend that you get the 2012 version.

                  You can read more by Ellen or contact her via her website, facebook and twitter;
                  http://www.ellennotbohm.com/

                  Tuesday, October 30, 2012

                  Book Review: We've Been Here All Along: Autistics over 35 Speak Out in Poetry and Prose


                  We've Been Here All Along: Autistics over 35 Speak Out in Poetry and Prose
                  Edited by Rachel Cohen-Rottenberg

                  Last time on this blog I lamented the "epidemic of autism" and the fact that it promotes flawed concept that autism is only a relatively recent "difference" in our society.

                  In fact Autism has been with us for a very, very long time, some say since the dawn of humanity.

                  We've Been Here All Along is a collection of stories and poems from 22 people with autism who are over 35 years of age. People born before the late 1970s. Before the "epidemic of autism" and before Asperger's Syndrome was even recognised as a possible diagnosis.

                  This is a collection unlike any other, full of amazing stories of men and women from all walks of life coping and not coping with the "curve-balls" that modern society throws them. It contains some amazing displays of empathy, so long considered impossible for those in the spectrum and the stories often highlight the ways in which society meets or misses the needs of individuals with autism.  I was particularly impressed to see so many stories by females on the spectrum - a group which is sadly under-represented in most books on autism.

                  Many of these stories and poems are about how these individuals have all found happiness, satisfaction and acceptance on their own terms and the hurdles they have had to overcome to get there. Not one of these individuals is resentful of their autism and all seem to have benefited greatly from knowing and understanding their label.

                  This is a very positive book which parents of children with autism should most certainly get. It provides a very clear roadmap to success and it closes with a chilling example of exactly how the wrong social mindset can destroy the life of an otherwise perfectly capable young person.  Each of the people in this book could well have met similar fates if our society hadn't become more mature and more tolerant in recent years.

                  I would urge everyone to pick up a copy of this brilliant book. It offers so much that other autism publications simply do not.

                  We've Been Here All Along is available as a paperback or a kindle ebook from Amazon and as an ebook on Kobo.

                  Rachel Cohen-Rottenberg blogs at: http://www.disabilityandrepresentation.com/

                  Tuesday, October 23, 2012

                  The Epidemic of Autism


                  In general, I feel that I'm more "easy-going" than many of my colleagues on the spectrum in that the language of autism generally doesn't faze me.

                  There is however one phrase which really "gets my goat". It's "the epidemic of autism". There is so much fear, inaccuracy and segregation hidden in this phrase that it passes through all of my barriers and actually manages to offend me.

                  First of all, there's the negativity associated with comparing autism with a plague. An association which brings to mind words like; avoidance, quarantine, cure and eradication.

                  Then there's the concept of rapid and uncontrolled spread, suggesting that autism is a new "disease" which has only recently appeared and is "spreading like wildfire".

                  All of these concepts do damage to the work of autism advocacy and to the support networks of children and adults with Autism Spectrum Disorders. They build on the concept of fear and target those who need our help.

                  Unfortunately, fear is a common tactic employed by some "autism organisations" and political platforms as a means of increasing revenue or votes.

                  If you hear this language being used, please take steps to correct the speaker. After all, if autism is part of your world, you need to advocate as well as care.

                  Sunday, October 21, 2012

                  Article: Teaching your Special Needs Child to Swim

                  Today I'm blogging over at Special-ism.  The topic is;

                  Teaching your Special Needs Child to Swim.
                  http://special-ism.com/teaching-your-special-needs-child-to-swim/

                  If you're in the process of doing this, then this is good article to read.  My kids had a lot of trouble with swimming but they're swimming well now.  They just needed an entirely different teaching method.

                  Thursday, October 4, 2012

                  The Poor State of Social Acceptance


                  Recently I was looking at Music Videos on YouTube when I found some videos by Adele, a singer whom I only recently discovered sings several songs that I like.  I watched the video and happened to glance through the comments. There were a couple of positive and negative ones, after all, not everyone likes the same music.  Then I found the unacceptable; "she's fat", followed by a few cries of dissent then a whole lot more "trolls" repeating the mantra.

                  It's reading comments like this which really makes me despair for the future of the human race.  We think that we're so far evolved from the haters of the 1940s but in truth we're not. We're every bit as judgemental and unaccepting as those we strive to distance ourselves from.

                  It didn't help that shortly afterwards, there was some kind of US political debate about an overweight politician and then our local radio station here in Sydney, Australia started having a discussion about why "fat" mothers were not acceptable parents.

                  It just makes me sick - and here's why....

                  Genetics
                  So much of our bodies is determined by our own particular genetic heritage. You'll find that families have major similarities not only in facial components but in general body shape as well.  You'll discover that twins separated at birth grow into the same sorts of people even though they live in entirely different circumstances.

                  You'll find thin people who eat more and exercise less than many "bigger" people so what gives them the right to be judgemental? Getting the "normal" body shape is the luck of the draw.  Why do these so-called "winners" feel that they have the right to pass judgement upon the "losers"?

                  The Relationship to Autism
                  So, the real question is why am I talking about weight issues on my Aspergers Autism blog?  Well, it's because there's very little difference between the two when it comes to the concept of "demonizing the genetically different".

                  Like "bigger" people, those with autism didn't choose to be the way they are.  Many people with autism are fighting their condition, trying to pretend to be "normal" as a way of fitting in - this pretence is no different to trying "diet-after-diet" as a means of "becoming" socially acceptable. Again, similarly, there's a shark-pool of quacks, offering expensive, ineffective and dangerous treatments -- and then there's bullying and stigmatizing. There's the social pressure to conform.

                  Hand-in-hand with that pressure of course comes depression, torture and at its worst, suicide. Many people with weight issues go through some very dark times indeed, as do those on the spectrum when bullied. While others comment, laugh and point, they smile weakly and try to pass off the taunting which does permanent psychological damage. Friendships are damaged when "friends" turn for no apparent reason and anger often ensues.  Why are we so quick to judge when a bigger person lashes out at their bullies?  Why do schools place the blame on our autistic kids for doing the same?

                  The fact that many people who are "bigger" are that way because of genetics rather than lifestyle choices is not well understood by the general public.  This is the same as misunderstanding autism as "having been dropped on your head".  Muscle-brained cures for weight include suggestions to not be so lazy and to stop eating - how different is that from the suggestion that people with social difficulties simply "get over it".

                  There are drawbacks to the condition. Many tables and chairs in public areas are designed for "normal" people, just as our classes in school and our noisy shops are "designed" for those without sensory difficulties.

                  I could probably go on forever but I think I've made my point.  Acceptance isn't about "tolerating" a particular subset of people because you think they deserve your sympathy.

                  True acceptance is the understanding that in humans, there is no such thing as "normal", there is only diversity.  Everyone has things they do well and things they do badly.  Everyone has feelings and everyone has the right to be treated as an equal without predjudice or judgement.

                  It's ok to like or dislike someone's work but if you feel that you need to make negative comments about their person, then clearly YOU have an issue with tolerance and with not knowing when to simply "shut up".

                  It's my hope that one day we'll throw off our human shackles and leave our 1940s selves behind but until then, at least we can all TRY to be accepting.




                  Friday, September 21, 2012

                  Article: What is “Stimming” and Why is it Important? (at Special-ism)

                  Today, I'm blogging over at Special-ism.

                  The article is called; What is Stimming and Why is it Important.

                  In the article, I look at those rocking, blinking, fidgeting and general noise-making behaviours commonly seen in children on the autism spectrum and I explain why they're important.

                  Head over to Special-ism and have a read.
                  http://special-ism.com/what-is-stimming-and-why-is-it-important/

                  Friday, September 7, 2012

                  Book Review: Secret of the Songshell: Book One of the Spectraland Saga by Brian Tashima



                  The secret of the Songshell is a young adult book with a difference.  It's written with the intention of providing a fictional hero with Asperger's Syndrome that young people with Asperger's can look up to and call their own.

                  At just over 300 pages, it's not a short book by children's standards but it's well within the reading range of most twelve year olds.  My son's learning difficulties weren't entirely up to the task but most children should have no problems.

                  The story concerns a young boy named Joel, who has Asperger's syndrome and an interest in music. He is transported to a fantasy world where his music plays an important part in events.  This is a fantasy with monsters and fantasy weaponry powered by musical instruments - and it's quite a good story.

                  The treatment of Asperger's syndrome in the book is mainly positive with just a single awkward moment when Joel is having a conversation which includes the word diagnosis.  The character of Joel is well written and the book captures many of the frustrations he encounters when he has difficulty reading expressions and tone.

                  Although Joel is hard on himself at times and frequently shows irritation with "words" and expectations, he is never portrayed as a helpless character. In fact, he's easily the cleverest character in the book and many of his gifts and differences are essential to the plot.

                  I feel that Brian Tashima has succeeded in creating a great fictional "aspie" hero and I would recommend this book to people both on and off the autism spectrum, to teachers and librarians and carers and lovers of fantasy fiction.  The book is suitable for children from about 12 years onwards.


                  Secret of the Songshell: Book One of the Spectraland Saga by Brian Tashima can be purchased from Amazon and you can read more about it on Brian's Web Site (http://www.thespectralandsaga.com/).

                  There are also facebook and Twitter accounts for the book.

                  Wednesday, September 5, 2012

                  My Eldest Child and his Ongoing Ritalin Saga


                  I don't often talk about specific issues with my kids on this blog preferring instead to tackle general topics which could benefit everyone. (and of course, I try to protect their privacy a little).

                  I'm going to make an exception in this case because it illustrates perfectly some of the issues and decisions which parents of special needs children face all the time.

                  My eldest son, aged almost 12, is in year six, his final year of primary school. He's been in "special needs" since kindergarten seven years ago and on ritalin almost as long.

                  Over the years we've had our share of school issues, both social and academic and it takes each new teacher nearly an entire year to understand him.

                  It was always our hope that one day, when he was old enough to "self-regulate", we could ditch the ritalin and I think that we all expected him to be off it by now.

                  There have been many times over the years when we've forgotten the ritalin (or run out). Usually in those cases we get a call from the school pleading for him to be medicated. The behavioural change really is that noticible.  Of course, throughout most of this time, he's been off the Ritalin during the weekends - except when he really needs it, such as when he's at tutoring.

                  I've noticed big social differences without Ritalin on weekend scout camps. He's usually still a little medicated on Saturday but by Sunday he's entirely off the medication. He becomes disorganised, impulsive, defiant, outrageous and funny.

                  I noticed on one camp that the other kids had issues with his Jekyll and Hyde style personality differences and I took the unusual step of sitting a few of the smarter kids down and explaining why. Interestingly, this changed the attitudes of the whole pack towards him and he became much more accepted.

                  Recently, we ran out of Ritalin and he was off it for a couple of weeks. We finally managed to get more but at the parent-teacher interviews a week or so later, we were told that "he's better without it".

                  Apparently he's far more social and interactive when he's off Ritalin. That much I'd picked up from the camps. The teachers said that when he was on ritalin, he didn't interact much but when he was off it, he would be walking "arm in arm with girls".

                  They also told us that when he was on ritalin, it was a struggle to get him to do anything in terms of work and class participation but when he was off it, it was hard to get him to "shut up". They preferred the latter state.

                  It was all going really well and we were pretty much convinced until I asked about his academic performance. I was stunned by their reply; "well, he's not learning anything anyway".

                  Nevertheless, we decided to take him off ritalin - and so began a few weeks of calls from the headmistress of the school to report; fighting on the bus, flipping the bird at a teacher (and the list goes on). We got nothing negative from his main teachers who were very happy with his active participation,

                  Our weekend tutor however was not happy. Her focus is academic, not social and she's a critical part of my son's learning. We've often said that he learns more in an hour per week with her than he does in an entire week of school.

                  Not only was he extremely unsettled but there were tangible measures too. He took twice as long to read a regular (timed) passage and retained considerably less information about it.

                  It seems that there's no one winning formula but that we have to adjust the dosage independently for different activities.  At this point, we're considering a much lower dosage for school (or none at all) and a "normal" dosage for tutoring. We've also asked that all playground and bus-duty teachers be informed that he won't be as "in control" of his impulses as usual.

                  It's tricky but I'm much more worried about next year when he will be at a new school and with a different teacher every hour. Are they going to be able to reach a consensus (medicated or unmedicated)?

                  I sincerely doubt it.

                  Saturday, September 1, 2012

                  Book Review: Ethan's Story; My Life With Autism


                  Special Note: For Today Only (apparently); The Kindle edition of Ethan's story can be obtained from Amazon for free. Don't delay, get it now.

                  You don't need to have a kindle or an ipad to read this book because you can read it in your web browser (via the free Kindle Cloud Reader).

                  Ethan's Story; My Life with Autism
                  by Ethan Rice
                  with Illustrations by Crystal Ord

                  Ethan's story is a very special book because it was written by an eight year old with autism.

                  In this book, Ethan explains his differences simply and from a child's point of view.  It makes the book a very honest read which is suitable for all ages.  The illustrations are great too.

                  Ethan's story is a very good way to explain autism to children.

                  Ethan's Story is available from Amazon.

                  Tuesday, August 21, 2012

                  Article: Helping Your Special Needs Child to See Past their Own Point of View

                  My latest post on Special-ism is now available.

                  Helping Your Special Needs Child to See Past their Own Point of View
                  http://special-ism.com/helping-your-special-needs-child-to-see-past-their-own-point-of-view/

                  It covers the need to understand the concept of individuality and the way this and other factors can lead us to have different values and expectations. I look at the problems of "invisible" values and the difficulty in understanding how different people have different sensitivities.

                  Hop on over to have a read.

                  Thursday, August 16, 2012

                  Making Peace with Autism Speaks


                  Sometimes it seems as if humanity is doomed to argue with itself over specifics forever, whether they be Star Wars vs Star Trek, Windows vs Mac or Islam vs Christianity.

                  The truth is that although we're all thinking about similar concepts; science fiction, computers and religion, there is no one "correct" answer - just our own personal opinion. Yet we spend so much energy fighting the battle that we have little left to spend furthering our own causes. 

                  That's how I feel about the whole "autism speaks" debate. Everyone will believe what they want to believe and it's not up to us to change the opinions of those who already believe. Instead, we need to move forward with our beliefs and our agenda and male sure that ours is compelling enough to catch the attention of the undecided.

                  Why we feel that message of Autism Speaks is not the best one
                  So, why all the antagonism towards "Autism Speaks", an agency which is raising money for "Autism"?  Why aren't we on the same page?

                  The answer is simply a matter of focus;


                  Autism Speaks is focussed on Autism itself, not on the individuals who have it.  Their definition of "living with autism" is all about the parents, who "have to live with the affliction" rather than on the child who has to fit into a society which doesn't readily accept them.

                  The focus of their funding is directed towards the search for a cure but think about this; Any magical cure which is discovered today will need years and years of testing before the side effects are fully known and human trials can begin.  By that time, the kids of today will be all grown up.  Even if they were "cured" immediately, they would have missed out on years of education and social interaction. A "cured" person isn't going to simply fit back into normal society like a .... well, like a jigsaw puzzle piece.

                  Sadly, the truth is even worse because the search for a "cure" keeps bringing them back to prevention, which means early detection in the womb - which of course means, abortion.

                  Think of it this way.  Perhaps you have something different about you? Maybe you wear glasses?  What if an organisation told you that their aim was to remove glasses from the population and that their means of doing this would be to abort people like YOU in the womb.  Then, in the same breath, they asked you to donate towards their cause.

                  Wouldn't you feel a little insulted?


                  Bashing isn't the Answer

                  Clearly many of the people behind autism speaks lack perspective. It's not their fault. Sometimes it's hard to see things from the point of view of others.

                  It doesn't help either when autism advocates come off as agressive towards them.  Who wants to listen to the words of an agressive and abusive person. Nobody likes hearing criticism about themselves or their charities and yet I see this kind of behaviour constantly on facebook, in blogs and comments and in petitions.

                  This brings me to the topic of today's post.  Making peace with Autism Speaks.

                  A Real-world Example
                  Now the post that prompted me to write about this is a petition on Change.Org which is trying to tell Walmart not to sell "Autism Speaks" products.

                  It's backed up by two well written posts by autistic parents which explain why this is a bad idea. I particularly like the post which shows where autism speaks deploys its profits. Neither post is calling Walmart out on the notion of fundraising, they're both directed solely at the misguided mission and claims of Autism Speaks.

                  It all seems very legitimate - but there's one big problem here.


                  Outsiders Simply Don't Understand
                  Walmart has tried their hand at raising money for autism.


                  They think that they're doing a good and humanitarian thing but now they're going to get their hands burnt. They'll do what any company does when a lot of bad publicity heads their way.  They'll drop the offending product and put a big black mark next to autism fundraising and they'll move onto other charities which promote their image in a more positive way.

                  Walmart and their customers don't understand the problems that supporting Autism speaks raises and to be honest, this isn't their fight. They don't want (or need) to know.

                  Meanwhile, there are plenty of families with individuals who could really benefit from a little financial support.  There's still a need for charity.

                  Instead of giving Walmart a hard time over the issue, we should be congratulating them for supporting autism charities and encouraging them to open their arms a little wider and embrace other, more specific needs within the autism community. The sort of feedback they get from supporting families will be better than anything that autism speaks can give them and if we're generous with our praise when they provide support, they'll soon change their focus.

                  We need to make supporting families on the autism spectrum an easy and rewarding thing to do - and it's not something that we can do by continuing to fight amongst ourselves. We need to be showing a united front.

                  For that reason, I'm suggesting that we "make peace with Autism Speaks".  I don't think that we should ever give up trying to get our message across but there are better ways to communicate and sometimes gentle persuasion is far more effective than brute force.

                  Saturday, August 4, 2012

                  The Olympics and Genetics and Aspergers Syndrome




                  I had a fascinating conversation with a work colleague yesterday about why we keep breaking records in the Olympics. I said that surely we've reached the pinnacle of our human abilities and that any improvements have more to do with better timing mechanisms, technology and drugs. He disagreed and cited the case of Australian, Jessica Fox whose parents were both medalists at earlier Olympics.  Surely that combination of genes gave her a distinct advantage over her competitors.

                  He also talked about a hurdlist who due to some difference was able to bend her foot slightly differently to cut off a few centimetres with each jump. Sadly I can't remember who it was.  I joked with my colleague and suggested that maybe there's a gene for all of this and jokingly suggested that his parents might have worked in the same field as him, in this case finance.  Amusingly, he said that they had.

                  So how does this all tie back to Asperger's Syndrome?
                  We all carry genes which adapt our bodies for certain situtations and clearly those adaptations make us more suitable for certain types of work, while making us less suitable for others.  The athelete who has a different foot may find that her foot is great for hurdles but not suitable for football.  Nothing is entirely positive, it's simply "more  suitable for a given purpose".

                  Charles Darwin's theory of evolution gives the impression that these changes occur on a massive scale and affect life going forwards.  The edict, "survival of the fittest" suggests that the weaker species perishes.

                  This isn't necessarily the case.  What if evolution occurs on a much smaller and faster scale? What if our adaptations are not life-threatening but are career-defining?  What if they could happen over only a small number of generations?

                  Perhaps this is an important part of understanding the differences which come with Asperger's Syndrome.  It makes us particularly suited for specific types of careers such as Information Technology, Engineering and Writing while making us less suitable for others such as hospitality.

                  Perhaps we're all evolving independently towards the ideal specialization.



                  Sunday, July 22, 2012

                  Learning to "Empathize in the Moment"


                  Long time readers of this blog will know that it's a myth that people with Asperger's syndrome can't empathize and that if a situation is explained to them, they can certainly feel emotion and put themselves "into the shoes of another". The question is, can a person with Asperger's learn to empathize automatically and without the need for explanation.


                  Empathy is a tricky thing to define but one thing is for sure; it isn't about feeling sorry for someone. It's about either feeling as they do, understanding how they feel or having a reciprocal feeling.

                  Some of the biggest challenges for people with Asperger's syndrome lie around the interpretation of gestures, tone and expression in both directions, sending and receiving. Gestures, tone and expression are the primary means of communicating the human emotional state with talking and writing being used far less.  In fact, quite often spoken expression confusingly communicates the exact opposite of what the emotional state is; for example when a person says "oh, that is just GREAT!"

                  Given these communication difficulties, the question then becomes less about empathy and more about expression.  I guess you could ask, can a neurotypical person learn to express their true feelings in the moment? Can an aspie learn to interpret those feelings and express empathy in a way that can be understood by a neurotypical - again, in the moment.

                  It's clear why people with Asperger's syndrome often need a detailed explanation before they can get into the shoes of another. It's just not normal for us and since we're using our own emotional state as a guide, our reactions to news and events are less empathetic of others and more interpetive of our own internal state. Neurotypicals may be surprised to hear that your own empathy towards us is usually not in a form that we want either.

                  An Example
                  We've all heard those "horror stories" about people with Aspgerger's syndrome who either act indifferent or laugh at funerals. Sadly these incidents lead people to presume that they are cold and "without emotion".  The problem here is that their emotional state is not the same as the majority, not that they don't have emotions at all.

                  An aspie with strong beliefs may feel that a person has moved on to a much better life.  They may feel that Grandma has finally been reunited with Grandpa and that they will be happy as a result.  In this case, they're empathising with the recently dead, not the recently bereaved.  This doesn't make their reaction any less empathetic and it certainly doesn't make them a "cold person".  It's the interpretation of others who misread the target of the emotion that is at fault.

                  As people with Asperger's syndrome pass through life they, like everyone else, acumulate a lot of "social wisdom".  Eventually they learn that their laughter, though well founded, has no place at a funeral and that the correct "group feelings" are of loss and sadness.  The first time that these expressions kick in, they may be a little forced or fake. Later as the aspie begins to get into a proper understanding of loss, usually because they suffer loss themselves and have an emotional state to relate to, those expressions become real and stronger.

                  It's not usual to see an older person with Asperger's syndrome overwhelmed by sadness at a funeral, even one for a distant relative. Once those feelings of sadness are tapped into, it's difficult to let go and almost impossible to control the intensity of feeling.  It's been said that people with Asperger's syndrome often feel emotion more strongly than others.  I'd be inclined to agree with that.

                  Expressing Oneself
                  I used the funeral example above to show a progression from delayed and even wrong emotion to instantaneous "empathy".  Clearly it is possible for a person with Asperger's syndrome to learn how another
                  is feeling but they need a few key things to happen;


                  The Situation must be clearly stated
                  In the case of a funeral, it's easy to tell that one is occurring, hence a person with Asperger's syndrome can easily tap into the feelings (and rules) for prior funerals. If the feelings of a neurotypical match those of a previous occurance, you need to let your aspie know.  Sad puppy-dog eyes aren't necessarily going to communicate what is needed.  You need to "use your words".


                  The Target must be obvious
                  In the funeral example, the target wasn't the deceased person, it was the grieving family. Our aspie projected empathy towards the wrong target. Usually in domestic situations, the target is more obvious but just in case, make sure that your aspie knows that the target is you.  Perhaps even say "can you understand what I'm feeling?" or "can you see it from my point of view?"  These things will help your aspie to find the target.

                  The Emotion must be familiar
                  One of most commmon and obviously "doomed to failure" empathetic problems occurs when a woman experiences strong period pain and expects her male partner to be empathetic.  We understand stomach aches and headaches, which are similar but still far from the same but that's about as much understanding as a male can bring to the table.  You need to use expressive language such as; "it's like being repeatedly punched in the gut" to get the idea accross. Empathy works best when you can relate to an emotion or feeling so if you can relate your feelings back to something your aspie will understand, then do so.  It's your best chance.

                  The Requirement for Empathy must be Stated
                  Aspies, and male aspies in particular, are problem solvers.  Throw a problem at them and their brains will go into overdrive to solve it.  The problem is that quite often their partners don't want solutions, they simply want empathy. Unfortunately, too often the need for empathy is presented in the form of a problem to be solved.  If you don't want solutions, just empathy, then please say it clearly.

                  The moment must be Right
                  Picture this, you're in the middle of a fight with your partner and then suddenly he turns around and asks you if you could get him a bowl of ice cream.  It's not going to happen. You're going to say "get it yourself!" The same applies to empathy. If you ask for empathy in the middle of a fight, you're simply not going to get it.  Choose your moments carefully.

                  Concluding
                  So, is it possible for your aspie partner to empathise in the moment without you having to spend time explaining things to them?

                  No. The main reason for this is that it's not yet possible for us to read each other's minds.

                  Is is possible for you, to communicate your needs in a short series of words and get the empathy you require without a long discussion of why?  Yes, definitely yes but it will take a bit of practice.  Start with longer and more expressive conversations and then over your years as a couple, you'll find yourselves increasingly able to anticipate each other's needs.

                  Of course, if you've already been married 10+ years and it's not happening, then there's a good chance that there is something wrong with the expression techniques that you and your partner are using.  If that's the case, see a counselor - or better still go on a marriage encounters course.  You'll find that a change of technique makes all the difference.

                  Wednesday, July 11, 2012

                  A Response to "Want to commit suicide because of my son's autism"


                  This post is a response to; 

                  Want to commit suicide because of my son’s autism
                  by Tammy
                  http://www.autismlearningfelt.com/2012/07/want-to-commit-suicide-because-of-my-sons-autism.html

                  Tammy, who blogs at Autism Learning Felt (http://www.autismlearningfelt.com/) was looking through the search words used to get to her blog when she saw “Want to commit suicide because of my son’s autism”.  Her post is a heartfelt response to the unknown person who searched for the phrase.

                  Please read Tammy's post.

                  A short while ago, there was a wave of support for a similar search using the term "I wish I didn't have Aspergers" and it was great to see the community come together to provide support and encouragement for the person in this position but I'm keen to see whether or not we're willing to open our arms to the carers.

                  I hope so.


                  The Issues between Advocates with Autism and Carers
                  Unfortunately, there is one big problem which stands between the advocates with autism and carers of people with autism - and it's a misunderstanding.

                  Advocates with autism see themselves as fighting to be accepted, not changed and certainly not cured.  They see society as a major problem but they often see their carers as problems too.  Their view is person-centric and it's all about themselves and others like themselves.  They're usually less concerned about what they can't do and more focused on what they can.  It's a great positive attitude which makes it much easier to accept oneself and be the best that you can be.

                  Carers have exactly the opposite view.  Often they are carers of people with autism who are unable to self-advocate.  As such they aren't as attuned to the internal thinking of those under their care and can only report what they see from their point of view.  Since they are focussed on their job as carers, they think in terms of the things they are required to do for the people under their care.  Obviously if a carer needs to do something, then it registers as a deficit.  Carers still blame society for many of the issues but they also find issues with the "disabilities" of the people under their care.

                  Carers and advocates are mostly thinking the same things.  They have similar needs and they are fighting for many of the same rights and support. Unfortunately their different frames of reference often put them at odds with each other.


                  When Carers Burn Out
                  Carers are often buried under the weight of their responsibilities. Since they are usually parents or close relatives, they feel that they have a responsibility to the people under their care and they are unable to escape from their situations.  Caring is hard work and long hours.  It often requires the carers to put their working and social lives on hold while they address the needs of their children well past the years they expected to.  It's little wonder that carers often feel burnt out.  It doesn't help either that the people who need carers often have communications difficulties and are unable to make it clear just how much they appreciate the help.

                  We all know about carers who reach breaking point and end up harming those in their care. These are well documented cases - and the autism community has rightly risen up in anger. It's understandable. There's no excuse to ever hurt a person who needs assistance.  If you can't cope, then at least hand them over to "the system". If nothing else, it's a much better option than harming them.

                  Unfortunately, the autism community and our society are both neglecting carers on the edge. These carers aren't harming their children but they aren't coping either. They shouldn't be condemned but consoled. They need support to lighten their load, they need options to provide them with breaks and most of all, they need reassurance that their efforts aren't in vain.

                  This is one of the major issues I have with fundraising for autism research. Those funds aren't required to increase the scans for autism, or to print placards and leaflets about immunization - or even to support scientists in their search for the elusive autism genetic code. No, that funding should be used to provide services and assistance to people who are already on the autism spectrum and their carers.  They should be used to improve the quality of life of families - not to try to detect and remove autism before it is born.


                  The Message to Carers
                  I know that I've strayed a little from the main point of this article but somehow it all felt important. My message to carers in general and to the carer on the edge who wrote; I want to commit suicide because of my son’s autism” in particular is;


                  Thank you carers! Your care and your dedication is very much appreciated by those whose lives you enrich every day with your presence. We know that it's not an easy task and we know that sometimes we seem less appreciative than we should be. 


                  We know that your life has not gone in the direction you probably imagined. We didn't choose the difficulties we face either but this is who we are and we are willing to work with what we have.  There are a lot of positives in our life, if only you could see them from our point of view. I would love it if you could spend less time looking for miracle cures and more time simply trying to understand what it feels like to be me. The autism blogging and facebook communities are there for you. Please talk to these people because they hold the keys to that understanding.


                  We want you to continue doing your best but we need you to look after yourself too.  Take regular breaks, arrange respite care and seek counselling for yourself.  An exhausted carer can't help anyone. Don't consider permanent solutions like murder and suicide. If you find yourself thinking along these lines get help - it will get better but only if you ask for help.  There's no shame in asking and your life and my life are both too valuable to risk if you're feeling overwhelmed.


                  Finally, don't sweat the small stuff.  It doesn't matter that our reading level is behind that of other kids our age or that we don't eat with our mouths closed. Don't paint our future with the word NEVER. Don't give up, just wait and see what happens. Don't withhold activities and opportunities simply because you think we won't cope - give us a go and if it fails, try again next year - we may surprise you.


                  Looking from the outside in might make you feel sad but if only you could see from our point of view, you'd understand how happy we can be too. Don't interpret a grimace as an expression of pain or a jumping episode as simply exercise - these are often expressions of extreme happiness and if it is you that gets this response from us, then please understand that we've just given you a "million dollar smile".

                  Tuesday, July 3, 2012

                  Why your child's grades don't matter as much as you think they do


                  We are a society obsessed with betterment through numbers and it seems that we are constantly trying to find ways to have simple numbers prove our worth in society.


                  Films, for example, are rated by the number of stars a reviewer gives them - or by their gross takings at the box office but neither of these is a personal rating applicable to you, the viewer. We've all had times where we've disagreed with critics and we all know that box office success doesn't always mean that a film is great.

                  The same applies to other parts of our lives. People who engage us in conversation want to know what type of car we drive, where we live and what we do for a living. They seem like harmless enough questions but quite often these people are fishing for the clues which will help them either outrank you in some way - or become insanely jealous.

                  Of course, our lives are far too complex to be defined by such simple comparisons but that doesn't stop people from trying - particularly if they have the numbers on their side.

                  School Grades
                  Believe it or not, school grades and awards are just another ranking. Unfortunately, they're a ranking which can destroy young lives if they're taken too seriously.

                  "You'll never get a good job if you can't get good grades", a parent will often say, "you'll end up being unemployed or collecting garbage for the rest of your life".

                  Such statements aren't helpful - and they're not true either. We live in a world where the "white collar" middle-management class is top-heavy and surplus - and there aren't enough tradies to go around. People can live without a project manager but leave them with a blocked toilet for a few days and they'll pay almost anything to have it fixed.

                  Even those of us with good grades are at the mercy of our social skills. It's the main reason why so many people with Asperger's syndrome work in jobs far below their capabilities and certification - or not at all. It's not what you know, it's who you know, how you relate to others and how well you fit into normal social conventions.



                  The Three "R"s
                  No doubt you've heard of the three "R"s; Reading, wRiting and aRithmetic. These are core skills which will be needed by our kids throughout their lives regardless of the career they pursue. They will need to be able to read signs, fill in forms and calculate costs as part of their daily lives. The three Rs form the basis of all other parts of learning and need to be developed in the school years because our capacity to learn drops off sharply in our twenties.

                  These skills take precedence over everything else including, science, religion, Shakespeare and art.

                  So if your special needs child is failing Shakespeare, ask yourself; are they improving in reading, writing and basic arithmetic? These are the things which really matter.

                  You're probably interpreting the three Rs as having kids who can read books, write essays and perform pages of mathematics.  These a great ideas but let us be a little looser in our interpretation.


                  • Reading is to communicate via unspoken language.  You'll find that there are signs to be read all around us but only some of them have words.  Have your child interpret iconic signs as well as words.  In fact, iconic signs are often an easier place to start.  Start with the basics such as ladies and gents toilets and then move up to less obvious ones like Stop and give way.  Make sure that you child understands the meanings of these signs since reading without understanding meaning is pointless.  When iconic signs are mastered, work on worded signs, street names for example.  Show your child how to reference street names in a directory or GPS as you drive.   Reading is not just about books.

                  • Writing is a means of communication via written language. Just as the first writings were pictographs, so too can your child's first written communication.  Have them draw things that they want such as food and drink. Leave bottles and cans with labels about for them to copy - you'll find that they copy the words too.  Don't stress over legibility - I know plenty of doctors who can't write legibly today.  Don't stress over backward or transposed letters either.  It is a pain and it is disconcerting when it continues for years but it's not necessarily a sign of dyslexia.  Be patient with your child's stresses and remember that low muscle tone which is common in children with Aspergers syndrome, can make writing very uncomfortable.  Ultimately, if your child has too much difficulty forming letters, then give them alternatives such as touchpads or computers to type on.  Remember that writing isn't about letter formation, it's about getting ideas down onto paper in a form that others can understand.

                  • The idea behind arithmetic is that your child should be able to conceptualise quantity and adjustments to it quantity.  You'll find very little everyday life mathematics that involves multiplication and division  Most of the time it's simply addition and subtraction.  Fractions rarely make an appearance and many people can go through their entire post-school lives without raising numbers to powers or using algebra or calculus.  For most of us, mathematics is all about determining how much change to expect when buying things so that you can tell if you can afford something and if you're being "ripped off".  With that in mind, take your child on trips to the shops.  Give them small amounts of money and ask them to buy what they can.  Lolly shops with patient storekeepers are great for this exercise and it's this kind of maths that is far more important than pages of exercise problems.


                  Beyond the "Three Rs"
                  After the three R's come social skills and the ability to form concepts.  Usually neither of these even warrant a grade at school but they're critical skills.  Social skills are far more critical than than grades, degrees and diplomas when it comes to getting a job - and they're even more important when it comes to keeping it.  If your child isn't learning appropriate social skills at school, then get them involved in extracurricular activities.  These can include sports, scouting, chess clubs, movie clubs - anything provided that there's a social aspect to it.


                  The ability to generalise from concepts is critical too but for some reason, this isn't even a skill that is taught or acknowledged.  It's simply expected to materialise from nowhere.  Unfortunately, it's not something that happens easily when a child has Asperger's syndrome. In those cases, it needs to be taught explicitly.  


                  Put Away the Report Cards
                  We'd all like our children to get great marks and we'd all like them to get student of the week or citizen of the term but the fact is that sometimes our child's differences work against them.  Lets not fall into the trap of comparing our child's metrics with those of other children.  It gets in the way of real learning.

                  Thursday, June 21, 2012

                  Article: Displaying Confidence in Your Special Needs Child

                  Today I am posting over at Special-ism

                  Displaying Confidence in your Special Needs Child
                  http://special-ism.com/displaying-confidence-in-your-special-needs-child/

                  It's an article about learning to let go and stopping yourself from reducing your child's hurdles simply because you, don't feel that they will be able to compete.  Sometimes you have to trust your children and let them fail ... or succeed.

                  Tuesday, June 19, 2012

                  Article: An Interview on SpeechBuddy

                  Just drawing your attention to an interview I posted on Speech Buddies;

                  An Interview with Gavin Bollard
                  http://www.speechbuddy.com/blog/interview/an-interview-with-gavin-bollard/


                  Speech Buddies is the web site of Articulate Technologies. They are focused on Speech Therapy and help children, parents, schools, speech therapists, health care providers, and pediatricians. They even have free custom lesson plans available.

                  Friday, June 15, 2012

                  Calling Mitsubishi out on funding Neurodiversity

                  Warning: This post is likely to be upsetting or even offensive to some readers.  I apologize for this.  I hope that by writing frankly, I can stir up some feelings on this issue and perhaps even help some people to understand why this issue is important. It's a difficult line to walk, stirring up feeling without offending. Hopefully I won't cause too many issues.

                  There's an article out by the canary party which seeks to highlight issues in Mitsubishi's funding of a charity.  It's well worth a read.


                  See: Mitsubishi Funds Group that Opposes Preventing or Curing Autism
                  http://us2.campaign-archive1.com/?u=b62698a50aececa2aded9f56b&id=14c79a482a&e=7835a237fe

                  It's a perfect example of what is wrong with so many of the autism campaigns out there.

                  First of all, the canary party complains that the charity being funded "opposes all efforts to cure or prevent autism, denies an increase in autism prevalence and now seeks to promote this form of “activism” among college students nationwide."

                  Let me be clear.
                  Any funding going towards assisting people with autism is worthwhile.

                  The exception I think, is when that funding is used to support top-heavy management or when it is used to fight other autism charities.  I don't believe that ASAN qualifies under either of those.  I'm happy for them to "oppose efforts to cure autism" but I'd hate to see them spending their money there.  I hope they're spending it on helping people with autism instead.

                  It's the same reason that I don't support most cancer charities.  They spend their money on research which I believe should be funded by government and private industry.  After all, the inventors of a miracle cure for cancer are going to be rich - why do we need to fund their dream when we know that they're going to screw it out of us later in medication costs?  They also spend quite a bit on handing out logo-emblazoned hats and on supporting the management of their charity.  I'd rather they spend money to help people who already have cancer to feel better - or help those families left behind in the aftermath of cancer.

                  In that sense, I feel that ASAN is dealing with the here and now of autism - not miracle cures (snake oil), not prevention (murder) and not top-heavy management structures.

                  It seems a worthwhile charity.

                  To be insensitive for a second (sorry, please bear with me), there is already a cure for autism.  It's the cure for life.  It's the same cure that we use for down's syndrome babies and it's the same cure that many political organisations over the years have used to "cure" unwanted parts of their population.

                  It starts with exclusion and ends with extermination.

                  Today, there are plenty of babies about with Downs Syndrome.  Not as many as before because many people are willing to be murderers in their search for perfection but still enough.  Enough to make it clear that we don't consider this cure to be acceptable.  Even worse, I have friends who were told that their baby would have downs syndrome. They elected to keep their child and seven years later, there is still no sign of the condition.  How many of our baby murderers are murdering for nothing?


                  The second point in the complaint against Mitsubishi is that it "blatantly violates MEAF’s own stated guideline: “We do not fund organizations or programs connected with a controversial social or political issue.”

                  Wow... and this coming from an organisation which clearly states that they would prefer that money be spent on detection and on the afforementioned cure.  No discussion necessary - it's much more political.

                  The next point complains that ASAN promotes “self-diagnosis” of autism, causing students who may have the disorder to not qualify for college disability support services"

                  Seriously, this doesn't even make any sense.  If someone doesn't have a diagnosis they can go through a lengthy process to get one - or they can self diagnose - or they can go without.

                  If someone desperately needs support services, then a formal diagnosis is essential.

                  If someone simply wants to understand their place in the world, then self-diagnosis is appropriate.  There's no need for funding and they're not missing out on anything.  They can always seek a formal diagnosis if they want funding later.  In the meantime however, there is no underestimating the value of understanding oneself.

                  The final point is bizarre. "ASAN promotes segregation of people with disabilities in extracurricular activities". For a start, I can't see how this is a major part of ASAN's mission.  At the same time, I fully appreciate the need for people on the autism spectrum to have extracurricular outlets with each other (as well as with the main body of students).  So many of the problems of autism are created by the expectations of society that interaction with like-minded and understanding peers is a major part of our coping strategy.


                  Well done Mitsubishi! It's great to see a commitment towards people rather than research -- and, shame on you Canary Party, leave your politics out of this.

                  Friday, June 1, 2012

                  Drawing the Line on Media Access for your Child with Asperger's Syndrome: Part 4 Developing a Plan


                  In my last few posts, I've looked at the positive and negative effects of media and device access for children with Asperger's syndrome.  It's clear that while our children certainly benefit more from the media than their neurotypical peers, excessive access is still quite harmful.


                  In this post, I want to look at some techniques for limiting media access and overcoming the negatives in a sustainable way.

                  A word on Sustainability
                  No technique is worth using unless it is sustainable. If your partner isn't going to stick to the rules and routine, then it simply won't work. Similarly, if you think that you can only stick to a new routine for a few weeks, then it's no good. In that case, you should choose a different routine - one that is sustainable.

                  The Use of Rules and Routines
                  Children with Asperger's syndrome handle rules extremely well. That's not to say that they will obey them without reinforcement but simply that clearly stated (and written) rules have the best chance of being followed.

                  Here is a sample set of rules/routine that we use in our house on school days;

                  Before School
                  NO Toy Room, NO TV, NO Games, NO Computers

                  7am Get up
                  Get Dressed in YOUR OWN room
                  Put your socks on.
                  Go to breakfast

                  7.45 Breakfast Ends whether you're finished or not.
                  No going upstairs after breakfast
                  Brush Teeth and Hair, Wash face
                  Put your lunch in your bag.

                  8.15 Leave for school
                  Mum will do a bedroom & toy room inspection while you are at school.

                  After School
                  Come inside
                  Take Bags to the table.
                  Empty Bags - give notes to mum.
                  Empty Pockets - rubbish to go in the bin
                  Get Lunchboxes out of bags, empty rubbish and put on kitchen bench
                  Put Bags in cupboard
                  Put shoes in cupboard
                  No going upstairs until after homework.

                  If your rooms and toyroom are already tidy, free time otherwise tidying time.
                  Free Time until 5pm but No Games and No Computer - If it's not raining, go outside.
                  Snacks - Fruit, Bread and cordial ONLY - No PACKETS.

                  5pm Homework hour - 5pm until 6pm

                  6pm Bathtime and Put Pyjamas on
                  Hang up uniform.
                  Mum will inspect.
                  WHEN OK, then you can play in the toy room or computers, games etc.

                  7pm Dinner

                  8pm Bed

                  8.30pm Lights out.



                  Offer Rewards
                  It's always easier to stick to a routine if you have an incentive such as a reward. Food rewards (sweets) are extremely effective but have a lot of side-effects both health and hyperactive. Money works with most older children but things get expensive very quickly and you'll find that the kids quickly start to assign value to certain tasks and will only pursue those they deem "worthwhile".

                  In my experience the best and most sustainable rewards systems are the intangible ones. In particular, free time, TV time, game time and computer time.

                  There are other kinds of intangible rewards too;

                  My kids for example will sometimes be rewarded with a "lunch order" which means that they can get fresh lunch from school instead of having to take sandwiches.

                  Sometimes the reward is an extra-half hour of "staying up" and sometimes it's "an award of choice". For example, I'll often tell the kids to come downstairs wearing their pyjamas. The first one downstairs and correctly attired gets to pick their drink or dinner plate. Depending on the meal, they may opt for the largest or the smallest but the reward itself is "choice".

                  It's very easy to give out little rewards like this randomly and it gives you, the parents, a motivational edge. Personally, I don't tell my kids that there is a reward for completion of a small task like getting changed first. Instead I offer it on a whim. This gets the kids reacting all of the time without locking me into promises.

                  In the sample routine, you'll notice that I specify end-points like bed time but not necessarily beginning points. This provides its own reward because the kids know that the sooner they complete a task, such as showering, the more free time they will have.

                  Keep them Busy
                  Kids use the media out of habit when they are bored. It makes sense for the kids to use media on rainy days although there are other options too then, like board games, hide and seek and playing with toys. On sunny days however, kids should really be outside.

                  Unfortunately, something is missing in many of today's kids; the spirit of adventure. In many ways, it is our society that is to blame. We see every stranger as a paedophile, every cut or bruise as potentially gangreous and every kid as potentially a "bad influence". In our over-protection, we've taken away our children's independence. I use scouting as a way of combating this and I'll happily let my 11 year old walk to the park or to the shops.  He's allowed to go by himself but we prefer it when he takes his 8 year old brother too.  Nothing makes me a prouder dad and scout leader than when my son does appropriate preparation before an outing. This means;

                  • Taking a look outside at the weather
                  • Taking a backpack
                  • Taking water
                  • Taking food
                  • Taking a buddy (his brother)
                  • Telling us where he is going
                  • Wearing appropriate clothes
                  • Wearing covered in shoes and socks.
                  • Wearing a hat (or at least taking one if it's not sunny right now).

                  I was floored the first time he did this.

                  Be Engaged or Provide Distractions
                  There's no sense in putting your kids outside if you're going to confine them in an area (the backyard) with nothing to play with. Swings are often not enough and even the most enthusiastic jumper will eventually get bored of the trampoline. As a parent, you need to find the time to go outside and play too or at least find a way to vary the outside routine.

                  If you can do this, you'll find that electronic distractions will be quickly forgotten.