Sunday, October 23, 2011

Our name is legion for we are many...

I should be working on my Weekend Grateful or Weekend Rewind link ups. No, actually I should be asleep considering it is just after 3am in the morning, but that is a whole 'nother post.

Instead I am sitting here pondering the sheer magnitude of autism spectrum disorder. Otherwise known as ASD. It is a spectrum for a reason. The incredibly large range of diagnosis and the massive scope of this disorder is, to most, unfathomable. The term Autism Spectrum Disorder is the broad umbrella (at this point in time, until the DSM V comes into play in 2013) which covers such labels as:
  • Autism Disorder - this covers what used to be termed classic autism or Kanners autism as well as a variety of behaviours and characteristics. Oh, that's another thing. The terms are constantly changing, as if this world on the spectrum was not confusing enough.
  • Asperger's Disorder - otherwise known as Asperger Syndrome. Apparently this is going to vanish *poof* when the DSM-V is introduced. Great. Just great. The condition my son associates with himself, the one we have worked years on becoming an accepted part of his being, the identifying factor that forms a part of his self-belief, identification and confidence is no longer to be recognised. He will just be autistic, fancy that. Or don't. More to the point, DON'T.
  • PDD - NOS - Pervasive Development Disorder - Not Otherwise Specified. I call this the limbo one. It is given in many cases in the early days when there is obviously something going on, but it is just not clear what. When help is needed, but the direction of the child's ASD has not become obvious. This is the one we were given in the beginning.
In the old days, when we first began this rollercoaster (around 2002/3) there were two other conditions under this broad cover:
  • Rett's Syndrome
  • Angelman Syndrome
Both lesser known genetic disorders with very serious and life-long implications. Apparently they no longer come under this ever changing cover.

This line of thought has been triggered by a heart-wrenching article written by a mum I am on several support sites with. The incredibly articulate Kirsty wrote this post which was published on the MammaMia blog.

After reading this, crying for a bit, then thinking on it, I started down memory lane. Our journey is unique to us. Whilst we have travelled a very different path to Kirsty, it has been no less painful, raw. (Refer Road Less Travelled) I think this is where a lot of people make assumptions, that Asperger Syndrome is a lighter sentence. It is not, nor is it a life sentence. It is a part of who he is, and always will be. His struggles are no less heartbreaking than those of others on the spectrum. Our hopes are no less valid. Our pain no less excrutiating at times.

People in my life (real and online) have commented, comparing us to others... you know the "Oh, but look at so and so's situation. You are so much better off than they are, you should be grateful." My answer is and always will be, "Yes, I feel for them. I can offer sympathy, compassion and to some degree, empathy. But it is not my life. It is not my child. It does not make our journey any less difficult, it is does not make the fear, pain and fight we experience any less valid."  Let's face it, EVERY EXPERIENCE of every parent in this complicated world is VALID. It is just that those of parents facing the challenges on the Autism Spectrum resonate far more deeply with me, for they are the battles I have fought, be it to differing degrees.

Our name IS legion, for we are many. It never fails to surprise me, just how many. I talk. A lot. I talk to people I encounter in every part of my life. I talk as much as I blog. And the huge number of people who confide in me that they too have a child, sibling, relative, friend or student on the spectrum... it takes my breath away.

Perhaps this is why when a mother such as Kirsty writes such an honest, powerful, evocative piece, it has a big impact. Read the comments that follow, the multitude of "I hear ya sista"s.

It is not 3am anymore. It is after 9. I can hear my two boys playing together, laughing, arguing, being typical brothers.

Boys 2 & 1 - 2004

I guess this has turned into my Weekend Grateful. Kirsty is right, he is so very easy to love. It is the easy bit. And as I listen to my boys laughter, I am so very grateful for both of them, as unique and quirky and boundary pushing and mind blowing as they are. As Maxabella says... it's all about perspective.


E. said...

Great post as always.

I, too get the "but you have it so much easier than so and so." Yes, I'm lucky. Boy Child can walk and talk and is toilet trained. It doesn't mean that Boy doesn't have difficulties.

Sometimes it is all about perspective. I lost mine for a while this week. It's back now.

Maxabella said...

Perspective... oh yes!

And, whatever 'it's' called, doesn't matter a jot really. He is what he is and that is what you love about him. x

Leanne said...

That's a great weekend grateful. Wow. Nice work MM.

Marita said...

Brilliant post.

I'm so hearing you. Just because my aspie can pass for normal, it doesn't mean she is normal and it doesn't mean we don't have our struggles. But I love her to pieces.

Jen said...

You taught me a new perspective to ASD mate and I am so glad that you did. It is very much all about perspective.

Brilliant post :)