Tuesday, March 27, 2012

Article

Today, I'm guest posting over at Special Needs.Com.

My article is called Emotional Communication and it deals with the way that the communication methods and communication needs of people with aspergers syndrome differ from those of neurotypical people.

It's worth a read, so please check it out.


Wednesday, March 21, 2012

Article: Resisting the Urge to Rewrite Your Child's Future

Today I'm blogging over at Special-ism;

Resisting the Urge to Rewrite Your Child's Future
http://special-ism.com/resisting-the-urge-to-rewrite-your-childs-future/

It's about parenting and how we sometimes take our children's diagnosis as a list of limitations when it should really be a list of difficulties for which we need to seek assistance.

Have a read.

Thursday, March 15, 2012

Book Review: “Loving Someone with Asperger’s Syndrome” by Cindy N Ariel

Over the years, I’ve read quite a few relationship books, some have been good, some were bad and some were truly great. Most of these books concentrated on neurotypical couples but I never really thought about how wrong that was until I read “Loving Someone with Asperger’s Syndrome”.

For me, “Loving Someone with Asperger’s Syndrome” takes the relationship thing to a whole new level. Cindy brings a great understanding of Aspergers Syndrome and related co-conditions into the book and makes it clear exactly how these things will impact a relationship.


With the divorce rate climbing past the 50% mark and aspie/nt relationships being (reportedly) in more danger than most, this book is an essential tool for any couple containing a partner on the spectrum.

Don’t wait until your relationship “feels like it’s in danger”.  One of the main things that I’ve learned about relationships over the course of my 14+ (so far) year marriage, is that using any marriage resources such as guidebooks and exercises will bring even the strongest of relationships closer.

“Loving Someone with Asperger’s Syndrome” has a lot of information packed within its pages. For a start, there are great chapters on dealing with anger, communicating and finding emotional connections, sex and intimacy, parenting, co-conditions and the choice of whether or not to stay in a relationship.

Within many of these chapters are exercises that you and your partner can do. The book is structured in such a way that you can do the exercises without your partner but it’s strongly recommended that both partners are involved.  The exercises will highlight things that you do well or poorly in your relationship and will help you to gain a much better understanding of your partner’s needs, wants and motivations.

So, the bad? I struggled to find anything bad in this excellent book but if I had to say anything, it would simply be that the aspie in the examples switches gender too often. I know this has been done for a good reason, to make the book apply regadless of the gender of the aspie but in some paragraphs, I had to do a double-take.  “Oh, ok... the aspie is the female now”.  It’s hardly a weakness.

This is a book that everyone with a person on the spectrum in their relationship needs to read. It's simply the best book of its kind.

“Loving Someone with Asperger’s Syndrome” by Cindy N Ariel can be purchased from Amazon.

Honesty clause; I was provided with a review copy of “Loving Someone with Asperger’s Syndrome” at no charge.

Tuesday, March 6, 2012

Autism - The Politics of Hate and Cure


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 me as it will be for my readers.

I had intended to write neutrally about this topic but unfortunately, I can't find a middle ground.

Finally, one more apology.  I'm sorry for the length of this piece.  Normally I'd split something like this across more than one post but in this case, I feel it needs to be kept together.


Thinking about things in different terms
I often feel that thinking about autism using different terms is useful. One of the easiest analogies to understand is racism - so I guess that this is the first group that I'm going to insult (sorry).

I'm going to start by using white people as my "autistic group" because it's less commonly done that way and maybe I'll insult less people - I don't know.

If we pretend that it's a racist thing and we say that we want to "cure" white people to make everybody "black" since the world's population is predominantly non-white. Does anyone see a problem with that?  I certainly do - it sounds very extremist and it's clearly wrong.

This is the same as suggesting that people with autism should be cured. I'm aware that some of my readers might not agree. That's okay. It's a free world and you can think what you like but please read on and give me a chance to explain.

Changing People
Staying with our analogy, there are of course, things we might want to change but they fall into several categories and not all of them are fair.  I'll be discussing three types of change in this post.

Unnecessary Change
Perhaps we want our white people to have better singing voices because it seems that black people are generally much better singers than whites. Is it fair to want this? Is it necessary? In this case, I don't think that it is. It's a want rather than a need and it's similar to the parent who wants their non-verbal autistic child to become an orator or to "follow in their footsteps".

It's a problem which occurs when people can't let go of their preconceived ideas of what their children are and it's bordering on "lack of acceptance".

There is little difference between a parent not accepting a child who simply can't do something and a parent who won't accept their child's gender. There are countries where children of the "wrong" gender are murdered or given away. We see those actions as wrong so why can't we see the lack of acceptance for what it is?

Critical Needs Change
The second reason that you might want to change people is to take care of critical needs.

Continuing our racial example, suppose we live in a hot country with little shelter and we wish that our fair-skinned child wasn't so susceptible to sunburn. Note; we don't wish for her to be black, just safer.

We accept that we can't change the child and we do our best to counter the problem with suntan lotion, a hat and dark glasses.

This analogy is a little like the use of therapy and supports to assist in developing a vital skill such as toilet training. We want our child to toilet on their own because it's safer and more hygienic.

We're not wanting them to be "normal", just more capable.  I think that this is acceptable because you're accepting the child and their limitations and your intervention is directed towards safety and self-sufficiency, not "normalisation".


How words like "hate" and "cure" don't help anyone.
There are parents out there who say that they hate "autism". I can see how it presents a large target but actually, it's not "autism" itself that you hate. It's the inconvenience, embarrasment, suffering and just plain hard work associated with some parts of the autistic condition that you hate.

It would be better if we could be more specific about the things we hate. Clearly we hate having to clean up after a toileting accident for example. Make it clear though, it's about US, the parents, not the children.

This is a good step forward but making a "hate list" of specific things will only carry you so far and really it's better to let go of the hate and "accept the things you cannot change". If you don't do this, things will simply build up until you explode or are overcome by depression.

The list is still an important part though because it tells you what you should work on first. The next step is to see what you can do to modify the behaviour.

You see, if you simply "hate autism" then your only option is to fund a possible cure or worse, to try dangerous therapies (brain surgery and chelation) in an attempt to eradicate what you see as the problem.

Personally, I don't believe that there will be a cure in my lifetime. In fact, short of some kind of thoroughly evil sterilisation process, I don't think there will be a "cure" at all.

Anyway, just to be completely clear; even if a working cure was developed today, it would probably be a decade before it passed enough clinical trials to be approved for general use.

So instead of throwing money into a lost cause, let's look at what our money can achieve today. Better support, better facilities and happy memories. Because we have a "hate list" we can turn it into a wish list. Let's look at what we don't like and see if we can make some progress.

For example, you might find that lack of communication is a barrier.  You might spend money on speech therapy, signing assistance, social story charts or an iPad. These are things that you can do for your children today. They will provide at least some benefit and probably happiness too.

Societal Change
Back to our reasons for changing people; the third case might be easier for some people to understand if the black and white roles are reversed so if need be, swap them in your head.

This time, we're not talking about "changing our children", we're talking about changing other people. It's something that the autism advocates are constantly talking about and it's a very worthwhile cause.

Let's imagine that social conditions are far better for people of one colour than another. That perhaps one race has access to better schools or that there are areas that the other race is not permitted to go. Maybe there's also financial inequality.

We've seen all this before in our history and we know that it was wrong. I think that in a lot of ways it still continues today. We have a lot of inequality of circumstance. People don't choose to be born one colour or another, they don't choose the religion that they grow up in and they don't choose their initial economic circumstances.  It's therefore unfair to judge them or to oppress them based on the circumstances of their birth. The same applies to people on the spectrum and indeed all people who were born with conditions which differentiate them from "normality".

Much of the discomfort of people with autism comes from society. As a society, we point out different people and we exclude people on the basis of appearance or abilty.

Consider the sensory child who hops into a crowded elevator filled with loud, smelly, squishy people and with piped music and movement for added discomfort. As parents, we take some of these things for granted and sometimes don't think about how they could affect our children. We're only human and we make mistakes.

What compounds these problems however is society. The people in the elevator who view your child's meltdown with distaste and mutter things about their behaviour; who tell you or others loudly that the child needs a good hard smack or that, heaven forbid, reach down and give your child a sharp poke with a finger, a stern gaze and a harsh voice.

Even worse, when you explain that your child has autism, these people either deny the diagnosis or back away as if there's a chance it could be catching.

Our schools and workplaces are full of bullies who not only won't understand but who will act against or exclude your child. In fact, often children on the spectrum are segregated, like other persecuted groups in our history. How is this fair?

Our children know that this is happening and it takes a great emotional toll on them. In the right environment and with the right supports, a person with autism can thrive. Crush their spirits however and it may take a lifetime to recover.

The question is, should we speak out or hold our tongues?  Being a non-confrontational person, I would love to simply crawl away and let society think what it will -- but that isn't the right thing.  Throughout history, the only way that persecuted groups such as women voters, black people and gay rights activitists have gained their their rights has been to fight for them. To stand up and be heard.

That's what we as in the autism community need to do to effect societal change.

There's no cure now and there is unlikely to be one in your child's formative years.  It's fine to fight but lets be clear what we're fighting.  It's not autism.  We're fighting for acceptance, for understanding, for support and most of all for a change in our circumstances.  

Thursday, March 1, 2012

Autism Politics - Puzzle Pieces and Rainbows


They say that politics is one of the two subjects that should never be discussed at parties. I've never really found that to be true. Autism politics however is an entirely different story. It always seems to start fights. I've discussed autism politics on this blog before though not intentionally but this time, I want to tackle the problem in a more deliberate way.


In the past, I've talked about advocacy, the curbie movement and some of the initial reactions to the proposed changes to the DSM. Recently there was a flare up of political debate following some comments on another blog but I'm not here to talk about that one - it's too hot.

It did get me thinking however. Perhaps if the feelings of people on different sides of the debate could be explored in peaceful circumstances they could promote understanding instead of conflict. It's a high-handed idea with little real chance of success but I think it's worth a shot.

To that end, this post is concerned with the two main symbols of autism/aspergers; the jigsaw puzzle piece and the rainbow. I have my own views on both of these but I'm hoping that you, my readers will add to the list of reasons (why or why not) instead of just choosing sides.



The Case For
The jigsaw puzzle piece suggests that although we're all different shapes and although we may seem odd by ourselves, together we make up something beautiful which is more than the sum of its parts.  Other explanations I've heard are; "each child in themselves is a piece of puzzle of autism.".  Actually, I'm not sure if that counts for or against the puzzle piece.

In some cases, the "autism pieces" of the puzzle are rainbow coloured while the "neurotypical pieces" are boring grey colours and all the same.  There's also the autism ribbon shown above which is widely accepted. I've heard that some people are happy with the colours and the puzzle pieces but dislike the idea that a ribbon makes them seem like a "survivor".  In the end though, I don't think you can please everyone.

As a symbol, the puzzle piece is easy to draw and quite recognisable although having met someone with a puzzle piece tattoo (you know who you are), I was quite surprised to be told that it was because she "belonged" to a group (a family) and was a bit of a puzzle.  It wasn't the answer I was expecting.

The rainbow colours make a good symbol and usually signify the spectrum.  In this case, the light spectrum is symbolising the autism spectrum. It makes sense and it looks pretty. Personally, I like the fact that the spectrum has a specific sequence. It's not that there is a specific order to different kinds of autism, it's just that many people with ASDs, myself included, love putting things into order.

You'll notice that I use the rainbow (and a head/brain) symbol for this blog.  I think it signifies my own position.  I like the rainbow but not the puzzle piece.  I also deliberately chose a slightly different spectrum for my image because I wanted to suggest that the spectrum looks different depending upon where you are.

The last point that I want to make about the rainbow symbol is that to me it says that we align with nobody and everybody. It's not pink or blue for boys and girls and it's not country or racial colours. We're all in it together.  We can be as individual as we like but we still fit into something.  Essentially it says the same as the puzzle piece without the additional interpretation that there is a mystery to solve concerning us.

The Case Against
The puzzle piece symbol has generated quite a bit of anger and debate over the years and for many reasons.

There are those who say that it makes us out to be a game, a puzzle to be solved. This is not a good feeling to awaken in a group of people who are accustomed to being constantly poked, prodded, researched, surveyed and medicated by health professionals.  We don't want to be studied and we don't want to be solved.

The group Autism Speaks (a whole political topic in itself which I may eventually discuss) chose the puzzle piece for their logo.  The implication seems to be that once the puzzle is solved, everything will be alright. It's a curebie approach - or at least, that's how many people interpret it.

I haven't really noticed as many complaints about the rainbow though many teenage male aspies don't like the idea that they're represented by a bunch of "pretty colours".

A call for comments
So that's enough from me.  There are good reasons both for and against the symbols and the colours.  What do you think? Do you like one or the other?  Do you have an alternative symbol you prefer?  Does the symbol or the colour stir good or bad feelings in you?