Yesterday I was given a prompt by a question posed on our site by Suz about ‘What Would You Say To a Parent of Newly Diagnosed Child?’
This is a question we ask a fair bit around here. Kate asked it at the end of her last post. But who and how do you tell once the diagnosis is in? There are many factors to consider. Where on the spectrum your child is, whether they will be in mainstream school or not, whether sharing the information with particular people or having the entire subject open for discussion would be most suitable for your family.
I’ll tell you what we ended up deciding and why.
As our son’s ASD presented as the milder of his conditions, when he was diagnosed, the whole autism world was an enormous learning curve for us. We had started primary school almost half a year before we received our official word. In the meantime we tried to settle in as best we could. One of the things the counsellor at our CAMHS service told us stuck with me. She said she doesn’t like to give advice as all parents will decide what’s best, but please consider who and when and whether we’d like to share it, because once it’s out there, you can’t take it back. Let it sink in and decide accordingly. It was great advice. I had read on forums of people who’d regretted being so open about it in the beginning- some information in ignorant hands can backfire on you.
Naturally we told close family and only a few friends, the school was of course already involved in the process. We started off on that foot, keeping the labels unspoken while we worked out what it all meant.
As time went on, because we were in mainstream school and because he already stood out due to attention and disruptive issues I didn’t want to add Aspergers to the public domain. The more he progressed and settled in his first huge year in school, I began to feel it was our private issue. When he was calm, he fitted right into the group, which was our school goal. On one hand I know it didn’t help the public service of educating those around us, but frankly I didn’t know enough myself, nothing compared with what I know now, or what is freely available on the internet. Perhaps part of me did hope it would melt away.
However what actually happened was that I became fiercely protective of his privacy and opportunity to find himself, grow and become part of the classroom- which with management and medical support, for the most part he did. As he grew up with his cohort, he was just him, a boy with a name and a colourful personality. The school kids are often better at seeing him and being more accepting than their parents. I was sensitive to the fact that it was not other people’s huddle fodder. Coffee conversation. Because if they weren’t on his team, it was absolutely none of their business.
I don’t know how the years fly but they do. I’m sure some of the school Mums assumed I was in complete denial that my boy’s behaviour or medical status was visible, because they knew it was off limits for discussion. It was not that at all. I wasn’t blind. I was protective. And my son was getting to the age where he was noticing the differences within his peer group for himself. He had questions.
At around the age of 10, it felt as though he truly deserved the space and freedom to explore what being him in this world meant and felt like. I became fiercely protective of his freedom of choice by this time. I didn’t want anyone else’s ideas intruding. Yes, we always discussed feelings, and traits, and he knew why he was seeing different healthcare professionals. But until such time as he understood the labels, and his own self image- I was going to leave it up to him to decide.
Becoming part of this wonderful site and community co-incided brilliantly timewise for us. Mr12 says he has nothing to hide, that I can write and say whatever it is I want or need to. I tell him we are not hiding but everyone has private issues in their lives. He can discuss them with whoever he feels he needs to and trusts. I will always share with those who are either sensitive to us or are in the same situation.
I’m glad now I handled it like I did. It’s worked well for us.
Are you happy with your approach? What did you decide or are you yet to decide?
{ 9 comments… read them below or add one }
It took me some time to decide whether to inform people or not about my boys (who were both diagnosed in 2012). At first I felt this overwhelming need to protect their privacy and feared that most would run with the opportunity to discuss their ‘special needs’. But with time, loads of therapy and a lot of trial and error on my behalf I am now at the stage where I comfortably talk about each boy’s diagnosis when ever I believe it will assist them and my self. Surprisingly I have told complete strangers at the park and had wonderful conversations about my sons and yet some of my closest friends will never be told, as I don’t believe they have anything to offer in terms of support and understanding. It doesn’t make them bad people by any means….it’s actually a relief to be with these people sometimes as I know that the conversation will never lead to that patronising tone of “so how are your boys doing?”
My eldest son (aspie) hasn’t been told that he has a diagnosis or what Asperger’s or HFA means, however he understands why he sees a speech pathologist, psychologist and and an OT and I believe that by the time he is old enough to do his own research on the matter, there will be no surprises for him.
I’m curious about the workings of parents minds when they tell or hold off on telling their kids (esp Aspergers/HPA) of their diagnosis
This is something I’ve never written about before Fiona so I hope it helps explain a bit of our picture for you. I think when your child appears to be aware that something’s up- as ours became- at least in our case it seemed the fairest thing to do to let him work out what it meant for him before other people told him the way they saw it. That happened to a friend of mine’s boy, it was a shock for them- parents *and* child.
For us it has been pretty much all out there from the beginning. We wrote a letter which we shared with everyone. It’s here http://theiloveyousong.blogspot.com.au/2010/05/there-is-something-we-want-to-share.html We have had an intensive ABA program in our home for 2.5 years so it would have been pretty difficult not to share what was happening for us. For the most part it has worked sharing the Batsman’s diagnosis and has certainly raised a lot of awareness in our surrounds. In this second year of kinder, i have shared his diagnosis less because he is going so well that he is largely undetectable in a group anyway unless you are really looking. I think as he gets older I will probably be more like you and be more protective though. Love this post Ms Twitchy xo
Thanks Suz. When our boy was small there was less common knowledge about HFA & Aspergers. Including us. Fidgeting and disruption stood out the most at the start. When that settled down somewhat, I felt they knew him at school well enough without throwing labels about publicly. They’re not a secret- they just need to be treated sensitively and I didn’t trust everyone to do that. He is who he is. I really bristled at the idea of his ‘labels’ preceding him to strangers. He is now old enough/informed enough to be part of the decision making processes, which makes me so very happy now. xxx
Like our childs place on the spectrum each child is so different how a family share there lives is their own business. We told kinder (they were invovled in helping us get answers for him) we told grandparents and aunts and uncles first and once we had the grasp of it (enough to be able to help) it was not a matter of hiding it but only those who needed to know were told ie: when invited to a birthday party I would inform the parent that he had sensory issues so if he appears to be uninterested in whats going on he is it will just be too much going on to join in like the others. On the other hand i will gladly talk about autism and my experiences to anyone who will listen. It is hard and thankfully we have not been exposed to anyone who has tried to get away from us when it is explained.
This is fairly similar to what we did, Sam. Because our son has dual diagnosis also, it was much too complicated to explain to everyone anyway. There’s overlap and when it came down to it- my boy was my boy and people should treat him with respect regardless. Amazing how the kids grew up together understanding him, for him.
We all approach things differently and know our children the best. I suppose I did the opposite – I told my son about his autism all the time, incorporating it into conversations from the earliest age, so that it was just part of what he was used to; and when he went to school I told the whole school (very small rural school of about 60 kids in total) – got up once a year and did discussions and talk on ASD – this all worked out very well and the other kids went out of their way to help him if needed. I wouldn’t have done that in highschool where ‘it’s cool to be cruel’ – in primary school the kids are much nicer. The other kids and parents would have worked out that he was different anyway (and talked about him behind his back) so this way nothing is hidden and he doesn’t feel like we are ashamed of his ‘diffability’.
That’s it Gabrielle- you have to take so many things into account, including your particular community. We always talked about feeling different, always encouraging self expression or ability to confide in us. On one hand I feared ignorant assumptions; on the other hand I wanted to educate the whole stupid world! Hence I jumped at the Autism In Our Words opportunity. It was time