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.