If You've Met One Person With Autism, You've Met One Person With Autism

30/01/2017 16:50

At some point in our lives we will all become an expert in a particular subject. Whether that be connected to work, a hobby, health and fitness, a health condition or something equally important in our lives.

When we arrive at expert status, it's possible that we will discount anyone else's opinion on the chosen matter regardless of whether they themselves are an expert or not. Some of us may politely listen and take stock of the other's opinion and others may just be blunt, rude and point out they must be wrong.

Although I enjoy reading, I don't read a mountain of articles around autism and autism parenting, but when I do I try and open my mind to think that there could actually be something I can learn or alter my own perspective.

Recently, I have read a number of articles and responses to blogs that I have been simply amazed by. I believe in a previous blog, I quoted a thought I had read previously:

'If you've met one person with autism, you've met one person with autism'

And equally us parents are quite different too, yet it seems acceptable to be slating people for their opinion or parenting style. One interesting video I viewed recently was from a group of people who had autism and their opinions of what you should and should not say to people with autism. Obviously, these are from people with autism who can verbalise their thoughts and have a degree of understanding. At the moment, I am Joseph's advocate and I have to act on what I believe is best for him but in addition for those around him.

If Joseph becomes distressed about something, he cannot verbalise what is wrong and I have to attempt to guess what it may be that's causing it. Could something have upset him at school? Could he be tired?  I could give a whole host of autism-based reasons as to why he's upset but it could be something simple, like he doesn't want to do it.

There are differing opinions over language to describe a person with autism (autistic, has autism) and I believe both sides have equal credibility. I have always said that autism should not define Joseph and I have read that this is a no-no, autism should define who Joseph is. I completely disagree, it is part of him but I don't want people to see that first. I want them to see him as a funny, sharp 8 year old who happens to have autism. That could indeed be different if autism completely controlled his life, but I don't believe it does.

As a parent, I have made a conscious decision to try and treat Joseph as the 8 year old boy that he currently is. That means, taking him to school, expecting a certain standard of behaviour, have manners, eat at the table, be tidy, do his homework and be involved in extra-curricular activities.

Are you looking at this list and thinking it is very similar to your own? I hope so, because there are certain values that I set for Joseph and know he needs the same boundaries as other children. Where this then differs for Joseph is that he may not have the ability to sit for long periods and encouraging him to sit there requires more perseverance on my part; similar with homework. I wouldn't necessarily say Joseph needs a fixed routine but he is comfortable with it and would prefer not to step outside his comfort zone so getting him to try something new often results in an assertive 'NO, THANK YOU'. The problem Joseph has is that I'm not very good at taking no for an answer, so we do it anyway. It doesn't always work out and I am left feeling guilty or frustrated by the outcome but equally, it often does and I am positively reinforced to continue with this approach. How do you know you don't like something unless you've tried it?

My favourite term at the moment is Sharenting. According to the all knowing Wikipedia, it's a term used to describe the overuse of social media by parents to share content based on their children. I am a Sharenter! My pregnancy was a little non-eventful (and facebook was relatively new at this point) so I didn't get to jump on that band-wagon. I know I shared pictures after he was born but didn't ever share my experiences of reflux or lack of sleep as I didn't want to look like a failure. I didn't admit to Joseph having autism publicly until at least a year after, for fear of judgement. Now, I feel I can use our experiences for the benefit of others (and my own mental health) by discussing some our lives publicly. This may be overkill for some people and be one of their one hundred reasons as to why it should be avoided.

I hope my approach is infectious but I also know it won't work for everyone. But my point is, we are all different, so let's try not to make sweeping statements or judgements. Live your life the way you feel is best for you (and your kids) and try not to judge too much.

Unless you are that expert.

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joseph
photo:Tina Medlock

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