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.
- Rett's Syndrome
- Angelman Syndrome
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.
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|