Saturday, 5 May 2018

Being an Advocate.


There is a chain of thought circulating in the Autism community, mainly from Autistic Adults, that parents especially if they are Neurotypical should not be advocating for their Autistic children.

There are a number of groups on various social media sites where this topic of being an advocate is commonly discussed. And let me say that the discussions have become very heated very quickly. Particularly when a parent, who the Actually Autistic members believe is a Neurotypical, comments. Oh my, it is one way to get members fired up!

The thought chain is that an Actually Autistic adult should be advocating for Autistic children or that the Autistic children should be advocating for themselves because no one knows Autism better than an Actually Autistic individual.

Now I have a huge issue with this topic and here is my counter-argument!

These Actually Autistic adults know their Autism, they don't know a thing about my little superheroes Autism. Quite often they will admit that they don't yet have children as well.

So what gives them the authority to tell me how to parent my children? What gives them the authority to tell me that I should not be advocating for my children?

Firstly - I'm not Neurotypical. I may not have an official ASD diagnosis but the comments from my little superheroes psychologists and pediatrician is that I am on the spectrum. So technically speaking, I could be considered as Actually Autistic.

Secondly - Sure Actually Autistic (with a confirmed diagnosis) adult community, I'm going to allow someone who knows absolutely nothing about my children be their advocate. Because that would work really well. Not.

Thirdly - If I allow my little superheroes to fully advocate for themselves, I know what the outcome would be.

L will advocate for no school. Ever. He is enjoying school but there are still days when he just does not want to go. His days would be filled with no school, watching his beloved superheroes on television, lots of trampoline time and Nutella sandwiches.

O would go to school and it would be all about science, maths and reading. And if she wasn't at school, she'd have her nose buried in a book. There would be very little social interaction.

At the present moment in time, both O and L have voices but they've yet to find their self advocate voice. They're yet to gain the ability to stand up for what they need to succeed at school and in the community around them.

Don't get me wrong, the best people to be driving conversations about Autism are individuals who have been diagnosed with ASD. But when it comes to being an advocate, an Actually Autistic adult is not necessarily the best person for the role.

As their Mum, I know my little superheroes better than anyone else - well, so does Daddy Superhero. We as their parents are their best advocate.

I always talk with my little superheroes and gain their input. I gain their opinions, their ideas and their thoughts on most major decisions involving them. I ensure that they are speaking for themselves as much as possible and that their needs are being heard. That is what advocacy is. I am not speaking for them, I am speaking on their behalf.

I may not be able to see, think and feel how they see life but I do know their Autism.

I know my little superheroes Autism better than their teachers and therapists and anyone within the Actually Autistic community.

And if you look it at this topic from another angle - it is incredibly offensive for an individual, regardless of whether the individual is Neurotypical or not, to tell a parent how they should be parenting their children or to tell them that you think that what they are doing is wrong. This is inappropriate and totally uncalled for on all sorts of levels. If you would take offense at being told how you should or shouldn't raise children, please do not tell a parent that they shouldn't be an advocate for their child.

So to the Actually Autistic community, no matter what you say or what insults that you throw at me, I will continue to be an advocate for as long as O and L need or want me to be in that role because at this present point in time, I am the best person for the role as their advocate.

Why? Because that is my role as a parent. To be an advocate for my children.

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I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx