I Wished this Version of Autism didn’t Exist
Unanswered questions and the fear of the unknown,
Kept me awake at night and I felt so alone.
People saying, “He’ll grow out it”, or Autism is a gift,
Had no idea what they were saying, I wished this version of Autism didn’t exist.
Robbing a child of their voice and basic life skills isn’t being blessed,
It’s heartbreaking to watch, and leaves you all feeling distressed.
Advocates and other Autism Mum’s may isolate you for being negative,
They claim that to the ‘Autism world’ you’re being insensitive.
Maybe it’s not Autism’s fault, but the severely delayed development,
Which leaves my child with many struggles, that are so blindingly evident.
Our version isn’t a “gift”, it’s a disability,
It affects everything from basic self care to mobility.
People have no right to judge, they can’t tell you how to feel,
They have no idea what you deal with, and the struggle is all to real.
It doesn’t mean you love your child any less, or see them as a burden,
You just wish life wasn’t so hard for them, you’d do anything to stop them hurting.
Autism isn’t just seeing the world in a different way,
It can be a constant struggle to make it through another day.
Severe Autism is hidden away and often unspoken,
Which leaves many parents feeling shamed, isolated and heartbroken.
When I say my son Freddie has severe autism, I’m not saying my child’s worse than yours, or that we have a harder time than you!
I’m saying it because it’s our reality.
I have no idea what other families live with, or have to deal with everyday.
I don’t claim to know, and I don’t compare my child to anyone else’s. This post is about our own experiences.
Freddie’s extra needs are not based on him having an Autism Diagnosis alone. He needs constant supervision and care, because he has a severe development delay.
Everyone loves to talk about Autism being a gift, or another way of viewing the world, but that isn’t the case for many families.
If I don’t speak the truth, or tell the whole story of our version of Autism, how am I raising awareness or acceptance for my child?
Who will understand his needs when I can no longer take care of him?
Some people won’t like this post, and that’s fine, because they don’t live this life, and can’t begin to understand our version of Autism, and all of the struggles that go with it.
We aren’t negative, we are positive and hopeful for the future. We’re also realistic and honest.
Severe Autism isn’t always positive. It’s hard.
It isn’t always a “gift”, but it doesn’t mean we love our child any less, we love him more.
We want the world to know about, and understand his version of Autism.
Then he’ll get the best support, become the best version of himself, and live in a world where he’s accepted.
Written by, Danielle Smith
Hi, I’m Danielle. I’m from the UK, and have a blog following my 5 year old sons journey with severe, non verbal autism. Freddie was diagnosed at 2 and a half years old. You can follow our story at Another View Of Autism & Our Journey So Far.
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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter
