Saturday, March 27, 2010

Do Labels REALLY stick?

Autism, Aspergers, ADHD, ADD, ODD, SPD, PDD......  Labels?

In my opinion, NO!

A label is the sticky thing we refer to on products in the supermarket that tells us what's on the inside of a can, NOT what tells us what's on the inside of A CHILD. 

I work very hard to dispel the myth that a child is labeled for life by receiving any of the above letters in a developmental assessment. 

After chatting with several parents this week who have brought up their reticence to "label" their child even though they clearly show signs of fitting into one of the above diagnostic criteria I'm becoming increasingly frustrated with the language (and ignorance) of our society (again... See here to refer back to a previous very very long posting for the origins of my dislike for poorly thought out responses and language).

When J was diagnosed as on the Autism Spectrum, it's no secret that I found the diagnosis scary and even devastating at first, I have now learned that my children are much much more than a diagnosis or label as some see it.  I was scared and devastated because of my own ignorance at the time and whilst it's quite common for parents to "grieve the loss" of their "normal" child (which is definitely a label of little substance and certainly not all that measurable by any standards), it's also pretty common for all of us in "label" land to pick ourselves up by the bootstraps and get on with the task of raising our differently abled (and perceived labeled) kids with pride and love.

If a child meets the diagnostic criteria for a diagnosis of any neurological condition it is actually useful and helpful (according to many many adults I have spoken with and are friends with on the Autism Spectrum) to go ahead and diagnose that child correctly so that they are supported within the school system (a diagnosis is the only way a child in Australia qualifies for extra learning support which they are guaranteed to require whether the reticent labellers are willing to accept or not) and in many cases the diagnosis explains to not only the rest of the child's network about some of the struggles they might face but also to the child himself (or herself) as they get older as to why they always felt different and in many cases misunderstood and in some very sad cases, miserable because of the lack of understanding and acceptance.

J was diagnosed on 08/08/08 and H much more recently (and I still quesiton that diagnosis as he presents so differently to J did but perhaps that's just the point of it being a spectrum).  I'm aware that everyone is different and children do not fit into a distinct box (see the article I wrote for Sharisa Joy's Voices and Choices of Autism online magazine last year to see my own concerns  in the notes of my facebook page) but when I play with my children I don't see them as Autistic first and a child second.  I don't feel any differently about them than I did on 07/08/08 pre first diagnosis.  I see them as J  and H.  Two very distinct individuals who share a bond of brotherhood and also a spot on a very diverse and varied spectrum of diagnosis.  Hence now Autism being recognised a a spectrum of complex neurological issues and not a rigid list of symptoms and boxes to tick.

My children are very alike in some ways and very very different in others.  Like any brothers.  Yet they are the same in the eyes of the departments and service providers we now have access to because of the diagnosis who can help them receive intervention (now that's a label.... how about, treatment or assistance as an alternative?) which will help them lead full, productive and most importantly happy lives (I so sincerely hope, happy most of all) lives of real substance filled with fulfilling experiences and relationships.  If I was slow to act and avoided the labeling process we would have missed out on so much progress for them and ultimately acceptance for them.  If I didn't fight to have them diagnosed I'd still be struggling to understand my beautiful and oh so accepted children.  It would be me living a sad and confused life, right along side of them and the way we all felt pre diagnosis was so stressful I never want to return to that world of label free but very very frustrated children (and parents).

For our family the diagnosis or label as some choose to incorrectly and ignorantly see it was the opening of a world of wonder, mystery, challenges (but overcoming all of them each day), love, acceptance and awareness.  I remember sitting in a counselor's office only a week after J's diagnosis and sobbing over what I (incorrectly and also ignorantly) thought this "label" meant and I vividly remember this woman looking over her public (overworked and inexperienced) counselor clipboard and saying, "It sounds like you are saying that Autism isn't FUN Chantelle?  Is that right?  Autism is not FUN?"  My reply was silence with mouth agape and furious wiping of flowing tears.....  She plowed on in her own ignorance (I now see the funny side but it has taken time), "Well it's my job as your counselor to make Autism FUN!"  Yep.  I'm serious.  She really said that.

After I'd picked my mouth up off the floor and gathered my things up I left her office without a word or answer of any description and never returned.  I vowed I would go home to my beautiful children and simply accept them.  I promised myself I would learn everything I could about how they tick and set about doing so and still constantly learn from them and many others with this label of Autism (among others).

To fear labels is understandable but fearing a correctly made and well supported diagnosis that will lead to understanding, help and acceptance is unfathomable to me now.

Here are the labels I would fear far more greatly than Autism:
  1. Naughty
  2. Bad 
  3. Stupid
  4. Misunderstood
  5. Sad 
  6. Bully
There are more but those should give a bit of food for thought.  Perhaps those labels are the ones that are the ones we should all fear for our kids to receive particularly if the only reason they receive them is because of our own ignorance, misunderstanding and denial......

A diagnosis is not a label and a child is not a diagnosis.

A child is so so so much more than a diagnosis.

We are fast approaching International Autism Awareness Month (April) and I invite everyone to join me in raising awareness (including their own) and celebrating our children for who they are regardless of their "labels." 

More another time.  Just off to jump on the trampoline with J and H.  Two wonderful, funny, loving, loved, understood, accepted, celebrated, brilliant little boys who happen to have a diagnosis of Autism.

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