Monday, April 17, 2017

Doing better than Light it Up Blue


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 percentage of the cost is going to the charity.

What is it all for?

One of the biggest gripes that I have with the cancer groups is that they are always giving out free hats or sunglasses. In fact I've been to a couple of charity runs where I saw them giving free branded hats to people who were already wearing hats. How does that help people with cancer or their families? How is that a good use of money?

The other thing that particularly annoys me about the cancer expenditure is that whenever we see advertising, it gives the impression that cancer comes from the beach, while ignoring the message that needs to be sent to all the shirtless guys on building sites.

What would I do?

Of course, it's easy to complain about things but it's much harder to suggest alternatives.

So here's my wish list for “light it up blue”

Education is Key

Instead of spending money trying to to get people to follow a colour, let's try to get some concepts across;

How about some slogans like;

  • AUTISM: If they're covering their ears in your shop, please turn your ambient music off.
  • AUTISM: Those repetitive movements are called “stimming” and they can help us to relax.
  • People with #Autism make excellent workers.
  • AUTISM: Eye contact can be painful. Don't make us do it. We're still listening.
I’d love to see how much education can be done in just one-liners - and at low cost.

Got a message? Maybe a bumper sticker would be a good way to get it across -- and you can still light it up blue if you really need to.


Low cost means, let's not make billboards or hats or T-Shirts. Lets use the free tools like Twitter and Facebook and lets use our connections to get mentions and interviews on the radio.  What's wrong with getting a large group of kids with autism together to make a big sign in the sand on the beach.

Don't Spend Money on Bureaucracy 

Whenever you are donating to charities, it's important to keep in mind that they all have significant operating costs. The have secretaries and management staff to pay, building management funds, billboards and other forms of advertising to support. By the time your contributions reach the intended target audience, they're very diluted indeed.

Then of course, once they do reach the audience, who's to say that the choices of support that they make, the slogans that they choose are the ones that you would personally choose to support.

Make a Direct Difference if you can

If you own a place, like a theme park, a cafe, a sports club or a movie theatre then you can make a difference by simply offering free or discounted rates for a day or a week or even for the whole month, to families with people who have autism.

One thing that impressed me this years was that the Apple App Store ran some events and reduced the price of a number of apps which are used by people with autism. 

In many ways, this is better than giving to a charity. It will bring attention to your business while helping families who are otherwise unable to go out.

Make a Personal Difference if you can

If you know a family with autism, then you can make a personal difference. Why not offer to take their children for an outing or to "babysit" while the parents go out.  Find a way to be involved in the family. If you have teaching skills, you might want to offer to tutor their child.

If you know adults with autism, you might make special effort to interact with them, particularly if they're socially isolated. For most people with autism, simply spending some time with them on their special interests will make their day.

Every little bit helps and in general, offering your time to an afflicted family is far better than offering money to support the agenda of a faceless organisation. 

Saturday, April 8, 2017

Asperger's Syndrome, Diagnosis and the Genetic Link

I was recently asked about my diagnosis and about the whole genetic link in Asperger's Syndrome. I thought I'd already answered this somewhere on the blog but when I didn't find it, I figured that it was something that I should clarify. 

Yes, I do have Asperger's syndrome. I also have a son, currently aged 16 with Asperger's and NVLD and ADHD(I). I have a second son with HFA but since he's very verbal, even more son than his older brother, it's clearly Asperger's now... or would be if the diagnosis of Asperger's still existed. 

You can find out more about my family and I on the "About page" and you can find out more about me specifically via my four part introduction.

See here for Parts OneTwoThree and Four.
Part four in particular talks about diagnosis.

"This Book is About You"

In a nutshell though, my eldest child was diagnosed at 5. His differences were picked up by his teachers who met with us several times and who kept saying to my wife with pointed looks towards me; "the apple doesn't fall far from the tree".  I had no idea what they were talking about.

Being good parents, we read a lot of books of Asperger's but what was interesting is that we read them completely separately. I read during my transport to and from work, while my wife read at home while I was at work. We didn't talk about it until we were mostly through the books.

I couldn't see anything odd or different about my son. He was very normal to me. In fact, he was "more normal" to me than most kids his age.

He was doing everything that I did at his age. The books described me far more than they described my son and for a little while I wondered if somehow my "wrong" parenting was rubbing off on him and changing him.

When we finally got back to talk about our books, my wife's first words were; "this book is about you". 

We got our son diagnosed but kept reading.

It was another six months or so before I decided to talk to the psychologist. By then I had read a few more books and I was pretty sure of my diagnosis. So, apparently was the psychologist. He'd met me a few times before and said that he'd known from the start.

Genetics

The books made the whole inherited part fairly clear but I couldn't see a family connection at first. After all, my father was just my father and I had more in common with my uncle.  My uncle liked similar (techy) things to me but apart from that he simply didn't fit the profile. I later talked to my parents about my grandfather whom I didn't know well enough because he was older and too unwell by the time I knew him. That was when I realised that he fit the profile of Aspergers. I then re-evaluated my father as a "person" rather than as "my dad".  I watched him meeting new people and I watched him in conversations with family and friends. It was there all along, I'd just never noticed it.

When my youngest was born, we fully expected that he had a chance of being on the spectrum and we recognised the signs from an early age even though he was (and at 13, still is) vastly different from my older son. 

There's absolutely no doubt in my mind that there's a genetic link and that it's a strong one. Over the years, I've met quite a few people on the spectrum, particularly during my five year stint as a scout leader. In those years, I got to know the kids very well before getting to know their parents. I would usually know which kids were on the spectrum long before they were diagnosed and I would nearly always see the signs in one, sometimes both, parents.

Sometimes I'd know that a child was on the spectrum and I'd meet their father and think... "no, he's definitely not on the spectrum" .... and then months or years later, I'd meet their mother, and I'd see the signs immediately. 

Co-conditions make Great Disguises

If you have one person with Asperger's or any other autism spectrum disorder in the family, there's a pretty good chance that there are others. The link isn't always 100% direct but it's there, somewhere.

Co-conditions, particularly ones which aren't "fully-fledged" are very good indicators. If a person has fully-fledged OCD for example, they tend to allow it to rule their lives. It becomes extremely difficult for them to leave the room because there are so many leaving rituals which need to be performed, so many doors which have to be closed a certain way, footsteps which have to be repeated to end on an even number and so on.

A person with an OCD co-condition that isn't fully fledged, can have some disorder in their lives but they will still have rituals.

They may still require specific pockets of order, for example, they may sort their shelves very specifically or alphabetise their collections but OCD doesn't rule their lives. It doesn't prevent them from living their lives normally.

Asperger's rarely travels alone. There are nearly always co-conditions such as ADHD, Dyslexia, OCD and Bi Polar disorder and these are usually what people notice first. It's these co-conditions that make Asperger's particularly difficult to diagnose. 

At the same time, if you look for the co-conditions, you'll quite often find the "aspie". 

Monday, April 3, 2017

Movie Review: Asperger's Are Us (2016)

Asperger's Are Us (2016)
Running Time: 82 minutes
Directed by Alex Lehman
Starring: Noah Britton, Ethan Finlan, Jack Hanke, New Michael Ingemi

Asperger's Are Us is an independent documentary about the "last show" of a comedy troupe comprised of four individuals with Asperger's syndrome. 

When the documentary starts, the group have already been performing together for a few years and as they've all reached College age and are about to go their separate ways, they decide to put on one final show.

It's quite a well put-together documentary which at times feels so "mocumentary" that it's a little like "the office". It features interviews with the boys themselves as well as with their parents. 

While the popular consensus is that comedy doesn't come easy to people with Asperger's Syndrome, I'm of the opinion that Asperger's humour doesn't come easy to neurotypical people. There's a lot of very funny bits in both the documentary and the show but not all of the humour will be accessible to all of the people.

It's also very interesting to watch the boys trying to put together a show with so little planning and there are lots of moments when you can tell that one or more of the group are being stressed by environmental factors or by each other. It's great to see how accepting they are of each other's differences and issues. The kind of support that they give each other is quite different from the kind of support that neurotypical people give - and it's far more appropriate.

If you're the parent of a younger child on the autism spectrum, you may be fascinated to see how the traits of your younger child may transfer to adulthood.

There's a surprisingly large amount of heart in this movie. 

There's also a lot of very good information here about diagnosis, life and love. There are some incredibly quotable dialog gems too.

There's also some amazing struggles with identity and some beautiful statements about parents, about the lengths that they will go to and the way in which their children with Asperger's show their love;

"Every Aspie parent seems to fear their kid hates them or their kid is unhappy, and it's 'cause their kid isn't communicating very much with them. That's part of the autism is you're self-centered, so you really want to stay within you and not get out and interact with the world, which includes your parents, unfortunately."

I found the story of New Michael and his father to be very touching indeed.

This is a film that I'd highly recommend.

You can view the trailer on Youtube.


I've looked for the film on Amazon and Google Play and in our local stores but I can't seem to find it. The whole film however, is available on YouTube and there's really no excuse not to watch it.





Saturday, March 25, 2017

Understanding the "unusual gait" part of asperger's syndrome

One of the more bizarre questions on the Asperger's diagnostic forms concepts whether the person has an “unusual gait”. 

I remember reading that and thinking that I certainly didn't fit the profile in that instance.

I think that the first image that popped into my head at that point was John Cleese doing the “Ministry of Silly Walks” sketch.

Of course, the reality of the unusual gait is “completely different”.

Then and Now

It was only later that I remembered that my wife, whom I met at age 14, used to tell everyone to watch out for my “funny running style”; something that clearly amused my schoolmates.

Could this be the famed “unusual gait”.

Fast forward about 33 years and I find that my work colleagues pick up on my “unusual gait” as I pass them on the street. Clearly there's something really different about how I walk. Not “wrong”, just different.

In fact, it's clearly not wrong because I walk more than most people and done random walks of up to 50km (6 hours) without any preparation, not even a drink bottle. It's clearly not an inefficient way to walk.

Why is there a difference?

I think that there are a few reasons why I have an unusual gait. I'm not sure how many of these are applicable to others on the spectrum but I suspect it's more than one.They fall into two major categories;

Low Muscle Tone

Low muscle tone is quite a common trait in people on the autism spectrum and it tends to manifest itself as general “floppiness”, particularly in the limbs.

It's especially visible in the feet. 

Contrary to the way it reads, low muscle tone doesn't mean that people can't be muscular. They most certainly can be. It simply means that the way that the muscles and ligaments are layered means that people with LMT can often “hyper-extend” some limbs a little farther than others.

This has a couple of problematic side-effects;

  • Many people with LMT stand in unusual ways (cross-legged). While this is comfortable for them, prolonged poor stance can lead to hip problems or other issues in the future.It's also common for people with LMT to sit on their feet well into adulthood. This can also cause social issues; particularly in the workplace.
  • The other danger is that hyper-extension increases the risk of sports injuries. It means that the foot can bend just that little bit too far when running or that stretches and weight lifting can more easily dislocate joints. 

If someone has issues with low muscle tone, it's likely that they would be at their most visible in their gait.

Overthinking and Gamification of Walking 

As a kid, I was always overthinking my walking. I would always see patterns in the floor and I’d find way to walk them or rules for specific avoidance, such black tiles or cracked pavement slabs. As a result, my walking was often sporadic and it involved a lot of jumping about.

As an adult, I’ve supposedly grown out of such things but I still find on my walks to and from the station that I make games from, or “gamify” my walks. For example, I have a rule that says that a car should not drive in front of you when you’re crossing a driveway or a street. Sometimes this rule extends to cracked pavers or pavers with access points in them. At the same time, while you can increase or decrease your pace, you can’t actually stop walking.

I don’t do this with normal middle-of-the-day walking, just the walks to and from the station. The streets are fairly quiet and there’s a fair chance that you’ll “win”. It also helps keep me distracted and lowers stress. It gives me a small slice of time when I’m not thinking about work or problem-solving.
I'm sure that it probably looks pretty funny from the outside though.

And now for something completely different...

Finally, if you've never seen John Cleese's silly walks sketch, you've missed something amazing, so here it is;


Sunday, March 12, 2017

Sometimes Autism and/or Aspergers is very Detectable

Throughout my life, I've had people reacting to me in a fairly protective manner.

If I was a different type of person, I'd probably find it quite patronising but in my case, I don't mind it and I even find it helpful at times. I know a lot of people on the spectrum who react quite differently, greeting this type of treatment with anger.

Getting frustrated with this treatment is more or less the same as being a feminist and being frustrated with men who open doors for you. You may find it offensive but the people who are doing these things for you generally mean positive things. 

How are we detectable?

When I was younger, I used to assume that people knew about my hearing loss and were simply helping out. I remember having to say to my teachers at school, “I'm deaf, I'm not dumb”.

Recently it's begun to dawn on me that this isn't deafness, it's not even knowledge of my place on the autism spectrum.

It's simply the “vibes” that I put out. The social ineptitude, my poor co-ordination and my introverted body language.

Detectable body language

As I’m always repeating, “everyone on the autism spectrum is an individual”. Things which are particular for me may manifest quite differently for others - if at all. 

In my case, I came to the conclusion that people were adjusting differently for me during “boxing”..

I've been doing kickboxing once or twice per week for the past four months. Prior to that I did three years of karate so I'm no stranger to contact sports. In also quite a tall person and at forty seven it's safe to say that I don't look like a kid anymore.

Last week I was boxing with someone who was obviously pretty good and someone else who was clearly a beginner. None of us had spoken to each other prior to the boxing so the only clues that we had about each other were from observation.

I noticed that the inexperienced boxer was often missing his cues or hitting with less than perfect form. Mine was better but of course, the experienced boxer was extremely good. What was interesting though was the that the experienced boxer started to help me out, giving me cues, tips and nods while he ignored our very inexperienced companion.

I’ve also noticed, over the weeks that I’ve been doing boxing, the instructor has been much more encouraging and interacting with me than with my peers. I’ve noticed this in other classes at the gym and in other areas of life itself.

There’s something in my body language that says that I'm naive or perhaps “different”. I don’t know what it is but I know for sure that it’s there. 

Saturday, March 4, 2017

He doesn't look autistic to me...

He doesn't look autistic to me... 

It's a phrase that every parent of a child on the autism spectrum dreads. Apparently it's meant as a compliment but in reality it's a fairly impressive bit of “multiple insulting“.

Disclaimer: Nick Cage doesn't necessarily have autism but I used this photo because it has the right kind of "weird face" required to match the offending phrase.

Why is this so insulting?

On the one hand,  it's insulting to all people with autism because it suggests that all children with autism can be identified by presumably defective physical traits making them “inferior” to their neurotypical counterparts in yet another way.

On the other hand, it's insulting to the person who has autism and their carers because it belittles their struggle and challenges the idea that they have anything to complain about. People often use the offending phrase to suggest that a child or adult doesn't need special treatment or support services.

It often leads into a discussion about the removal of services or the reduction of financial support.

What "comeback should you use"?

As a parent, I know that there are a million witty comebacks for this line but the question is less about which to use and more about whether to bother with a reply at all.

I usually make my decision based upon whether or not I think that the person can learn from the experience.

If I think that learning is possible, I usually fall back on one of my favourite quotations; “if you’ve met one person on the spectrum, then you've met ONE person on the spectrum”.

There's no rule that says that people with autism should look or act in any way similar to each other”. 

Usually people who want to learn will begin to understand at this point.

People who don't want to learn will never change their minds regardless of anything that you say or do. If the person you're talking to doesn't seem to be trying to understand, then it's time to break off the conversation.

Is there any truth at all to this statement?

As far as whether it's possible to tell if someone it autistic simply by looking at them is concerned, the answer is "no".  Close observation however is a different thing and if you were to observe a person in their natural environment for long enough or under the right conditions, it's possible that you'd pick up their differences.

People who are very familiar with autism, particularly people with autism themselves, can often pick up on similar differences in others.

I've noticed that this occurs even if the person observing is completely oblivious to their own differences. It's one of the reasons why children with autism in mainstreamed schools often find friends on the spectrum.  It's also the reason that people with autism often discover years later that their partners are either on the spectrum or have genetic links to someone else, for example brothers or cousins, on the spectrum.

In autism, like more often than not, attracts like. 


Experts are everywhere -- but they won't approach you

While many teachers, child therapists and doctors are pretty good at spotting people with autism, it's fairly unlikely that you'd encounter someone with a talent for detection at your local shopping centre or at a social gathering not related to autism.

More importantly though, if you did, they would generally have the experience and training required to know not to approach you and offer their unsolicited opinion on your child.

Saturday, February 18, 2017

Aspergers and Driving: Should You Encourage your Teen to Learn?

Now that my kids are around their mid-teens, the question of driving is starting to come up. Not from them of course because it’s pretty common for kids on the spectrum to have little or no interest in driving - but from friends and family.

In today’s society, the means and ability to drive is very important, particularly if you live outside the inner city areas, you have tools that you need to carry for work or you have a job that moves from place to place.

Like most things, driving is a skill that’s best mastered while you’re young

Is it Safe?

One of the first questions that people ask regarding Asperger’s syndrome and driving is “is it safe?”. Since people with Asperger’s syndrome are, by definition, highly functional, they certainly can have a good grasp of the concepts and dangers of driving. They’re able to follow road rules and they’re able to devote the attention needed to driving.

In general terms and under normal circumstances, driving with Asperger’s is no more or less safe than any other form of driving. 

The Motivation to Drive

Many teens with Asperger’s syndrome lack the direct motivation to drive. There are quite a few reasons for this;


  • They’re usually happy to stay at home in familiar surroundings
  • Other family members will often give them a lift
  • Lacking deep friendships, they’re less inclined to go out anywhere with friends
  • Their meagre needs can usually be serviced by local shops (walking or public transport)
  • Many special interests; books, computer, TV, the internet & music occur at home
  • Online shopping reduces the need to travel
  • The prospect of learning; Forms, tests, costs, lessons etc, is daunting & easily avoided
  • People with Asperger’s try to avoid stress and other people - driving involves both.


Left to their own devices in a comfortable home setting, a person with Asperger’s syndrome is extremely unlikely to become motivated enough to want to learn to drive. It’s up to the parent to give them a push.  

Should you give them a push?

If your teen with Asperger’s has the ability to pass the test, at least the verbal/written parts of the test, then absolutely, you should encourage or bribe them into going for their driver’s licence. There are lots of positives, even if they don’t drive or don’t end up owning a car.

The driving tests ensure that your teen has a good understanding of the road rules and the effects of drugs and alcohol on driving. Even if your teen is a pedestrian or if they’re going to get a ride with friends, this is good information to know. There’s also the fact that job applicants with drivers licences are often looked upon more favourably than those without - even if the job doesn’t involve driving. It shows that the applicants are willing to work for goals outside of school.

Obviously there’s a difference between pushing your teen towards driving and becoming an insufferable nag. If you push too hard and too often, you’ll turn your teen off the idea of driving. Sometimes you just have to push a little and then give them a little space.

This is me, with my P Plates back in 1987

Passing the Test 

You’ll need to work with your teen on passing the written tests which these days are less about common sense and more about facts and figures. If your teen is having trouble passing, look for practice tests online and leave handy reminders for the more difficult questions around the house.

When it comes to the more practical parts of the test, you should start the lessons yourself in a deserted area, like a new estate on a weekend. Starting the lessons yourself means that you’re in the best position to gauge your teen’s anxiety levels and to “back off” if required.

Once your teen is a reasonably good driver, you’ll want to engage an instructor for a few lessons. 

Instructors are expensive but they’re also very familiar with the tests and will be able to teach your teen things that are looked upon favourably by the testers; for example hovering the foot over the brake pedal as you go over a pedestrian (zebra) crossing.

Meltdowns and Driving

The one thing that you need to stress to your teen is that they should not drive while they are in (or near) a meltdown state. 

There was one incident from my university days where the university services team mis-binded a 300 page assignment and I had to drive home in tears and at maniac speeds to reprint the whole thing on a slow dot-matrix printer in time to resubmit in the same 24 hour period.

I remember very little apart from cars pulling over and giving way to me, so I was obviously driving poorly. 

If I’d been thinking a little more clearly, I could have explained the problem to my professor, left her with the mis-binded version and probably been allowed to submit it properly the following day without penalties.  I’m just grateful that nobody was hurt that day.

You need to ensure that your teenager knows that no situation is unsolvable. If they're close to a meltdown -- don't drive. Call mum or dad!

General Driving

You can usually relax once your teen has their licence, as kids with Asperger’s often don’t have the same amount of peer pressure as those without. This means that there’s often less reckless driving. It’s not a rule though and you’ll still have to watch their behaviour around their friends for signs of unsafe behaviour.

As a teen, I found that my driving was quite good when I was mucking around but it wasn’t so good when I was driving normally. This is something to do with my general alertness levels. I still probably would have been okay but because I had very little experience, I was unprepared for unexpected issues such as wet roads and people parking in unexpected places.

Once my kids are driving, I’ll be putting them through defensive driving courses to help them handle those unexpected conditions.  It's expensive but it's safer and far less costly than repairing cars and property.