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What is Autism to me?

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When my boy was diagnosed with ASD aged 3, I felt bombarded with statistics, charts and facts about cases of other children. Nothing was catered specifically to him and his behaviour. Whilst this information is important and helpful, I think we need to consider our own circumstances and experiences. Who your child is with their added fascinations, routines or quirks that make them who they are as an individual, who also has ASD, what they need, as well as sharing our experiences and how we help them every day.

For me, the diagnosis has given me a deeper insight into the reality of what it would be like having autism, and how perceptions differ from person to person.

This started from extensive almost obsessive research, often late into the night, about how I could help my son. I would rifle through endless information about what autism is and how it may affect him as an individual. This included his constant routines and rituals, which had to be carried out or would otherwise result in a meltdown, even over small things. Well, for you and me they were small things, but in his mind were big things. For example, the way in which you left the house, and if you have to run upstairs to get something when he gets to the door, that’s game over mother, you’ve interrupted the routine.

The research I did helped me in so many ways to understand him better than I thought I would ever to be able to, it also helped me personally not be so quick to judge other people. I learnt that every child or adult, even though they have the same diagnosis, are still unique and have their own personality and their own way of perceiving the world.

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What we need is understanding, awareness and acceptance that yes my child may be different from what you expect a child of his age, but these expectations are what makes it hard for our children or adults to be treated as individuals. They deserve to be spoken to as if they were anyone else, no matter how they respond and be given the patience to deal with the world in ways in which is easier for them.

Being a parent of a child with autism can be very lonely, there a lot of things your child may not want to do and this may not be what you imagined when you had a child, but once you let go of those expectations of how a child should be or what they should do, it becomes possible to think about everything in a different way. You start to forget about the negatives and instead start to tune into the positives of your child and realise there are ways they can do things, it just needs to be catered to them and how their mind can process the challenges they face every day, which no one else can see.

This was shown very clearly to me in this video, but just because a child reacts in this way, does that mean we should stop doing things just because our children find it a challenge to cope? No, we need to find ways to support and accept our children and find ways to encourage them to put themselves in these situations with methods to help them stay calm.

I want an ‘I Can’ ethos.

I remember hearing about this in one of the research holes that I had buried myself into after diagnosis, I found this video…

which completely changed my way of thinking about autism and the way he spoke about his mother was exactly as I would like to be spoken about.

I want to be there for my son weaving a web of support for him throughout his life. Even though this is not what I expected to be doing when I had a child, I accept that even though sometimes I find it hard, without me supporting him, I don’t think he could cope with the trials and tribulations of the world we live in that he interprets so differently to us. Don’t get me wrong, that’s not me bigging myself up, that’s me having the confidence to say I will find whatever ways I can to support him and sometimes give him a little push if I think he needs it.

I want to help change the views of autism and the view that there are certain things my son “can’t” do and tell him he can, and no matter what, I will be his biggest supporter. Together we will do things, even if it means adapting them slightly to fit around what he can cope with.

I don’t want to be someone who stops my child from doing things because he is autistic, I want to be someone who takes his uncomfortable situation and makes him feel comfortable.

An autism diagnosis is not the whole of who they are. It’s knowing that yes, some people may not understand, and we probably will get a stare or even a comment about the way our children are, but we need to realise that it doesn’t matter what anyone else thinks or says, which is easier said than done I know.

We have to remember our children are not judging us, we are supporting them and we should support each other as we all know we are doing everything we can to make our children feel safe and secure in a world full of anxiety for them.

So what does autism mean to me? Autism is knowing that yes while your child may be different and struggle with things other children may find easy, it does not mean they cannot do things; and support, acceptance and awareness are what we need in society today, not just for us, but for our children.

If you would be interested in attending one of the group sessions or simply have any questions or concerns you would like to raise, please contact Verity on goodtoshare@ymcanorthtyneside.org

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