Life with Aspergers

Recently, I was unpacking the dishwasher and putting cups away while thinking about how we chose the cups and mugs and how my wife and I have very different thought processes when it comes to buying them. I was wondering if this was a male/female difference, an autism/neurotypical difference or just a Gavin/Joanne difference. Somehow, I got to reflecting on the whole "extreme male brain" theory of autism and why I dislike that model more than ever.  ... and then of course, I started thinking about how people escape these gender stereotypes. The art of choosing a mug My wife used to choose cups in sets of four or preferably six. They'd all have the same pattern (or at least they'd all be related in some way).  Often this pattern would match the walls or benchtop in our kitchen. Sometimes the mugs she'd choose would come with their own stand which meant that they annoyingly took up space on the bench or they'd have a set of special hooks on the wall which...

Over the years, April has been associated with the "Light it up Blue" campaign launched by the group "Autism Speaks". The campaign originally advocated awareness and then acceptance.   It's something that I've posted about more than once before on this blog.   Autism Politics: Puzzle Pieces and Rainbows  - March 2012 How to do More for Families with Autism than just being "Aware" of it - April 2014 Doing Better than Light it up Blue - April 2017 In recent years, the campaign has changed from something that people with autism were wary of to a cause that is actually opposed by the majority of them. Autism Doesn't "Speak" There are many reasons for this shift but in my opinion, the fact that "autism speaks" is entirely controlled by people without autism is probably the major factor. It's not that they've never had people with autism on their board; they've had some famous people including John El...

The month of April is “Light it up blue for autism” month. It's the month where we we embrace exciting concepts like autism “awareness” (ah, so that's the word we use to describe “these people”) and autism “acceptance”, (ok, so I guess we can't stone them to death anymore**). ** That's a joke by the way.  They might have been started with the best of intentions but I'm really not sure that they help as much as they'd like us to think. In fact, it's just possible that they do more harm than good. It's not Just Autism  There are a lot of charities around which gear up on certain months. In particular, there are the yellow cancer charities and the pink breast cancer ones. The various charities collect funds from the sale of ribbons, bears, chocolates and other goodies. The more established of these charities also partner with grocery stores and manufacturers to produce specific items, such as bread in marked packaging, where a certain percentag...

Please note: Under the DSM V, the concept of Asperger’s syndrome no longer exists. It is now simply referred to as Autism. Throughout this post, I use the word "Asperger's" because it's more frequently associated with the word "mild" but my comments here apply equally to both Asperger’s syndrome and autism.  You see it all the time on web forums,  things are going smoothly until a parent somewhere pipes up with the phrase, "I have a son who is mildly Asperger's. ..." and from there on, the group dissolves into two factions. One is continuing to remain loyal to the original purpose of the group, providing support and advice while the other is offended and is either busily discussing the semantics of the word "mildly" or tearing strips off the poor person who used the turn of phrase. It's also a turn of phrase that some people on the spectrum use to refer to themselves although this is much less  common.  What is "mild Asp...

This has been a very busy week in terms of autism rights and there have been a number of incidents which demonstrate very clearly that people with autism are not being treated with the respect that they deserve.  History is full of stories of groups of individuals who were victimized for physical, economic, social or theological characteristics and while we still have a long way to go, constantly pointing out these issues has proven to be the best way to make progress towards an all-inclusive society.  Autism is yet another of these groups but it's still in infancy. At this point, we're still fighting for acceptance and the concept of true equality hasn't really been considered. It's important for us to continue to point out oversights and to correct thinking patterns which can whenever they arise. The Murder of London McCabe Last week, London McCabe, a six year old with autism who "loved hats, loved his parents, and was ‘all smiles'." was thrown ...

The idea of an Autism "Awareness" day is fraught with problems. It suggests that people aren't even aware that autism exists, It's a very scary thought. It puts autism far behind most other forms of  disability.  There is no problem with the acceptance of blindness or deafness, of people with missing or damaged limbs or indeed, of most other mental and physical conditions.  People have no difficulty believing in "invisible" (at first) issues like cancer, AIDS or MS but for some reason, the entire autism spectrum is subject to scrutiny. Everything from ADHD, to Aspergers to Autism is disbelieved. Raising Awareness and Blue Light Bulbs Raising awareness is a nice little idea which effectively means that people get to post little blue statuses or celebrate recognition because they've lobbied to light up national monuments in blue. The problem is that raising awareness of a condition does very little to improve the live of the people who live with it...

One of the most common issues in the world of autism is the perception of Autism itself as a problem - or even worse, as the personification of a problem. It's fairly common in the early days of diagnosis when parents simply aren't handling the changes to their expectations but if it persists for more than a year then it becomes a problem which can end up doing a lot of harm. Objectifying autism takes the focus off the child and puts it on the condition instead. Parents, groups and companies in this mode spend their time thinking about how to cure and prevent the condition rather than on how best to help their children. The focus then becomes extremely negative and it is only a small step from discussion of murdering an imperfect fetus to the murder of a child under your care. This outlook doesn't help anyone. It's not about "Saving the World", it's the smaller, personal stuff that matters Being the parent of a child on the Autism spectrum is...

One of the most frequently cited "treatments" for Autism and Aspergers syndrome is the Gluten Free Diet. Gluten refers to two proteins which are found in grains such as wheat, barley and rye. Gluten gives dough a spongy texture and it's a common ingredient in bread and pizza bases.  It's also used as a thickener in sauces and soups. I've been asked again about the Gluten Free diet and since I've never really talked about it here, I guess it's something that I should discuss.  Take note though, I'm not a doctor and I'm not an expert on anything, except perhaps information gathering. Before acting on any self-diagnosis, be sure to consult a doctor. What is this Gluten thing? There's a chronic digestive disorder called celiac disease which causes people's bodies to "rebel against gluten" and mount an auto-immune response. This is a serious problem which can damage a person's small intestine.  It affects about 1 in 123 pe...

Today is April 2nd. It's the international "Autism Awareness Day". People are encouraged to wear blue to show their support of this "awareness" and many bloggers will post every single day throughout the month to raise "awareness". I'm not one of those bloggers. My posts will come out as and when I have relevant and useful material to contribute.   It's rare that I interrupt a series of  posts for a specific event but I thought I should talk about the whole Autism Awareness thing. I'm all for the world understanding and accepting and loving people with autism - in fact, I'd extend the whole courtesy to people without autism too. To cats, dogs, mice, lizards and plants.  I suppose that it's a nice gesture but to me, the whole blue thing is as irritating as those "baby on board" signs. You know the signs on cars that make you wonder what you're supposed to do?  Cooo as you go past? Offer milk? ...

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...

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...

One of the comments I received on my last post was a request for information on people with autism and other disabilities who were being killed by their parents and in some cases older siblings because they were considered to be too much of a burden.  I started compiling a list but it quickly became too big for a comments response. In fact, I got tired of posting links after doing the last five years and the stories were really making me feel ill, so my apologies for non-completion. It is with great sadness that I post this list. 2012  March:  Elizabeth Hodgins killed her 22-year-old son, George. 2011  May:  Yvonne Freaney killed her 11-year-old son, Glen. 2010 February:  Gigi Jordan killed her 8 year old son, Jude July:  Saiqa Akhter killed her 2-year-old daughter and 5-year-old son 2008  September:  Allen Grabe killed his 13 year old son Jacob Grabe. 2006 May:  Katherine McCarron age 3, smothered by her...

I like to think that I can see both sides of many issues.  Sometimes it comes easily and sometimes it's a real struggle for me. Recently, and with alarmingly increasing regularity, stories have been hitting the news of parents who kill their kids because they are unable to handle them.  Autism is often cited as the problem and for some reason, society seems to be very understanding. These stories are very painful to read but I read them anyway and I think really carefully over these situations looking for clues.   In my own way I like to think that the world isn't evil, that people don't commit these criminal acts unless they are completely overwhelmed.  I try so very hard to attribute causes to things around these people, to blame society for a lack of services, to blame mental issues, high blood pressure or any other influence. It's like making excuses for Hitler. Maybe it makes me feel better to pretend that there isn't evil in the world but I'm l...

This is bound to be a controversial post and I'll probably offend at least a few people out there. It's not my intention but it's probably inevitable so before I begin, I want to apologize - it's nothing personal okay. At the same time, I'll admit that I'm not entirely qualified to say what I'll be saying here. My kids can use the toilet though I often say that my boys are stormtroopers - amazing shooters who seem to hit everything except the target. I understand that there are other people out there with far less fortunate circumstances and I'm aware that I haven't walked in their shoes. Like most of you, I'm still learning about autism politics and I make mistakes too. I'm sure I'll be picked up on these in the comments. It's not my intention to sensationalise things or to "close the book on the subject" - simply to tell you what I've learned so far.  I'm sure that it will be as much a learning experience for ...