Wednesday, 23 October 2013

To tell or not to tell?

As I mentioned on my Facebook page, I had a really negative experience this morning with someone's reaction to Ollie's autism.  It has made me rethink my position on being open and honest with everyone about his diagnosis.  Here's what happened.

Will and I picked Ollie up from occasional care.  He spends one morning a week there and it is so good for him.  It was a bit of a rocky start but things are going really well.  When we arrived Ollie was standing at the door crying (not unusual when he sees other mothers arriving and is anticipating our arrival).  One of the carers told me that there had just been an incident where Ollie had hurt another child.  He was playing with a toy and she tried to take it off him so he pushed her (just quietly, how normal does that sound?!).  She was only little, just walking.  There was no damage done and she was not upset.  The mother of the child was there when the incident occurred and was still there so I approached her to apologise.  I told her that he had autism.  Her response was 'I know, it is just that she is little.' and then 'Is it good for him to be with normal children?'.

Her comment completely threw me, and those of you who know me will know that I am not easily thrown. All I could manage to say was 'Yes. Yes it is.'. I felt tears coming and fought them until she had left but couldn't hold them back before we too exited the building, damn it. The carers, who I should add are ABSOLUTELY FABULOUS AMAZING WOMEN!, saw that I was upset and I told them what she had said.  They were all very supportive, reassuring me that of course he was meant to be there etc etc.

The thing is, I know that.  I have no doubt in my mind that he has just as much right to be there as any other child.  That will never change.  All of the people I have come across thus far agree, or at least outwardly appear to agree.

My stance has always been that we should be open and honest about Ollie's diagnosis.  I have many reasons for this stance.  I want people to understand him, and without knowing he is on the spectrum they never will.  It is not like asthma.  Autism is an integral part of who he is.  It wouldn't be fair to him if we kept it hidden.

I also strongly believe that the stigma associated with autism is perpetuated when people choose not to disclose the diagnosis.  I am not ashamed of Ollie's autism.  There is nothing to hide.  He does not have an infectious disease.  I am really sorry to all of you who are reading this who have chosen non-dislosure.  I don't mean for this to be an attack.  I know that you are doing it to protect your child.  It is just not what we have chosen for our child and I will be honest that I don't understand that choice.  It doesn't mean that we can't be friends!

Back to today.  So many things have gone through my head, the first being that perhaps I misinterpreted what she meant.  Maybe she was genuinely asking 'Is it good for him?'. Everything was said without hostility or aggression.  There was a language barrier.  I don't think I am wrong, but I just don't know.  My first line of defence should not always be defensive, and I don't think it is, but this is my child we are talking about, and sometimes I feel like a lioness with her cubs.  Don't mess with my kids bitch!  Maybe it was a little bit of both.  Who knows?  I suppose in the coming weeks I will be able to read her intentions more clearly during drop off and pick up.  I'll keep you posted!  

Regardless of my interpretation it still begs one question - did my disclosure of Ollie's diagnosis change the way this situation was perceived? If Ollie was a typical child (shop speak is neurotypical, or NT) and he pushed the little girl for trying to take the toy, all he would be doing is behaving as children do.  I know plenty of children, including my older neurotypical child, who have reacted physically when another child has touched what they perceive to be their belongings.  It is completely developmentally appropriate.

In fact had this situation occurred when no parent was present I doubt it would have even been reported back, in the case of two typical children.  There have been a few times across the year where I have thought 'Would you be telling me this if Ollie didn't have an ASD?'. Sometimes we, and I put myself in this category too, are so quick to pathologise what really could be the typical behaviour of any toddler.  We need to remember that they too are kids learning to navigate the world.

Do I sometimes do Ollie a disservice by telling people of his diagnosis?

I don't have an answer to this question and I suspect that there is no answer.  I think the benefits of disclosure far outweigh the benefits of keeping it hidden.  I will however pause for a just a second to think on it next time.

I'd really love to hear your thoughts on this topic.  Please comment on my Facebook page.  As with so many issues there are no right or wrong answers, and we must remember that differences of opinion should be celebrated.  :-)

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