We have been rolling along in our new way of life for a couple of months now with Alex in Prep and catching the bus by himself, and a new baby in our lives. I hadn't stopped to worry much (more than usual) about how Alex's Autism impacts and affects each and every day of his life whether we think about it or not.
I had the luxury of walking my son home from the bus drop off point at the nearby shops one afternoon, and on our way home we passed some children playing in our street. Some of them were younger than Alex, some of them were older. The older children were boys dressed in school uniforms the same colours as Alex's and they seemed curious as we wandered by. "What school do you you go to?" they questioned Alex. An innocent enough question, one I usually never think twice about when talking to other adults, but I had to stop and think. These are children, and children can be cruel, especially when it comes to being notably 'different'. "A school very far away from here, he has to catch the bus" I fumbled together as a reply. "See I told you he didn't go to our school!" the second boy said to the first. "Our school is called Hampton Park Primary" the first boy proudly announced. I smiled and said "That's nice" and shuffled Alex towards home as quickly as I could before they could ask any more questions.
It seems Autism is still in the dark ages in most people's minds; something we should be trying to hide. I'm also noticing an online trend of people who have an established profiles in various online forums, who then create a second profile with a made up name once they start to suspect their child has Autism. Even if they are a 'newbie' they are usually offered lots of help and advice and no one figures out who they 'really are'. At some stage I might receive a personal message saying "Hi, I'm really X please don't tell anyone, no one knows about Y's Autism". While I never would betray anyone's confidence either online or real life, I do find it puzzling that most tell me that even their immediate family don't know. Whilst I can sympathise that receiving the news that your child even 'might' be Autistic can be terrifying, it's important for you to have support from those who are closest to you and your child. I can understand holding off telling more distant relatives until you feel more confident and you certainly wouldn't want extended family to find out about your childs diagnosis by stumbling across something you've written online. Still, I find it puzzling that parents hang on to this information for months and months in fear of being judged by their nearest and dearest.
Although I have only been in the 'Autism world' for around 2 years now, never before have I heard a story along the lines of "I told my family my child was Autistic and they excommunicated me". I'm not even sure excommunication is the fear. Judgement certainly can be a fear; I can certainly vouch for the amount of judgement we receive from random strangers and even those who we thought would be more understanding. But do we honestly fear that our closest family would be more about judging than helping?
The number one response I received when telling people about Alex's Autism was doubt. Now that was hurtful in a way because it meant I had to explain over and over again why, although I didn't want him to be, I believed the pediatrician was right. In a way, I suppose it was sweet; everyone saw Alex as so perfect - how could he have Autism? However, over time every single person who doubted at the start has admitted they "see it now". No one ever stopped loving me, or Alex the entire time.
Autism is a hard enough battle to fight and you'll have great difficulty fighting it on your own. Constantly trying to explain away all their oddities and having no sounding board for ideas or venting outlet to place your frustrations. Creating a real life support network for you and your child is a vital step towards understanding and treatment, and as they say; unless you have walked 1000 miles in our shoes, you have no right to judge us.
Although I have only been in the 'Autism world' for around 2 years now, never before have I heard a story along the lines of "I told my family my child was Autistic and they excommunicated me". I'm not even sure excommunication is the fear. Judgement certainly can be a fear; I can certainly vouch for the amount of judgement we receive from random strangers and even those who we thought would be more understanding. But do we honestly fear that our closest family would be more about judging than helping?
The number one response I received when telling people about Alex's Autism was doubt. Now that was hurtful in a way because it meant I had to explain over and over again why, although I didn't want him to be, I believed the pediatrician was right. In a way, I suppose it was sweet; everyone saw Alex as so perfect - how could he have Autism? However, over time every single person who doubted at the start has admitted they "see it now". No one ever stopped loving me, or Alex the entire time.
Autism is a hard enough battle to fight and you'll have great difficulty fighting it on your own. Constantly trying to explain away all their oddities and having no sounding board for ideas or venting outlet to place your frustrations. Creating a real life support network for you and your child is a vital step towards understanding and treatment, and as they say; unless you have walked 1000 miles in our shoes, you have no right to judge us.
I know a few parents who refuse to acknowledge that their children even have austism or want to "train their child out of their autism". It's not always other people that make the judements. But agreed that others should not make judements of families in any situation.
ReplyDeleteGreat post thanks Beck. When we got our diagnosis, we told most of our friends and family. Our diagnosis was quite late though (11yo) and all of these people knew our son had developmental issues. The only people who were surprised were people who didn't know him very well....
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