Life with Aspergers

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 compilat...

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/

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. Get...

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 v...

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 a...

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.

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...

"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...

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 sto...

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 ...

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.

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 ...

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.  Note: With the closure of Special-Ism, this article is available in my free book  " The Special-Ism Posts volumes 1 and 2 " Also, because this was a fairly popular post, I've reprinted the article on my website; What is Stimming and why is it important

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 ...

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). ...

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 .

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 .

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 "Auti...

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...

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...

Today I'm blogging over at Special-ism and the subject is Disciplining Children with Special Needs , click over to have a read. Discipline and Kids with Special Needs http://special-ism.com/discipline-and-kids-with-asds/

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 advo...

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...

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.

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.

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 “acti...