We won’t be Silenced
Severe autism, level 3 was my son’s first diagnosis. But I’m not supposed to talk about it.
Severe learning/intellectual disability was my son’s second diagnosis, I’m allowed to talk about this one.
Most children with this level of autism have very complex issues and learning disabilities.
You can talk freely about most disabilities and special needs without being shamed. Autism is not one of them.
Some severely autistic children will live at home forever, or in a residential home.
Some severely autistic children will still need help with all of their personal care needs when they grow up.
Some severely autistic children will never be able to work, drive, or have relationships.
This is many families reality, but nobody is really listening or supporting these families.
Why?
Because it’s not interesting news. It’s interesting if an autistic child grows up to be a doctor, a public speaker, and can live independently.
It’s not interesting news if a severely autistic child grows up still unable to dress themselves, unable to bath themselves, and unable to leave the house independently.
The world doesn’t accept and acknowledge those children and adults, who don’t turn into a ‘miracle’ story.
They only take notice when the most heart breaking and shocking documentaries are shown on the tv, and by then it’s too late.
The damage has already been done to those individuals and families.
The abuse and mistreatment uncovered in the BBC Panorama documentary a few months ago was horrific. But people who don’t have a child or a family member with autism and a learning disability have probably already forgotten about it.
It’s a special needs parents worst nightmare.
If a child or adult is non verbal, not toilet trained, dependent on others, or has challenging behaviour, they are hidden away, or forgotten about because to some people, they aren’t the ‘best’ representation of Autism, and it’s wrong.
Why aren’t we educating the world, why aren’t we showing them children and adults who are severely autistic and have learning disabilities, why aren’t we showing the world how they can support individuals and their families who live with this diagnosis.
We should teach people how to interact and communicate with those who are non verbal.
Why do we have to wait until they’ve been abused and mistreated before their stories are highlighted. Why can’t we show the world how these children and adults should be treated in order to live a happy, fulfilled life.
We should be highlighting challenging behaviours and how best to manage them, not avoiding the individual altogether, and isolating the family. We should be celebrating their strengths. We need to try and teach the world to be kinder and more accepting.
We can all help to create a happy, safe environment for our most vulnerable children and adults.
Why do we only share the miracle stories and the tragedies.
I want people to be kind, I don’t want my child to be forgotten about or isolated because nobody outside of his family knows how to communicate with him, or manage his behaviour.
The world has to accept that some children turn into adults who will still need constant supervision and care.
Some individuals may not ever speak, some may not ever be toilet trained, and that’s ok.
Some individuals will show aggressive behaviours and have outbursts, we need to talk about it, we need to try our best to help and support them.
It shouldn’t be kept a secret.
I don’t want to imagine my son as an adult in a world that is still ignorant to severe autism and learning disabilities.
We will continue to fail children and adults with this diagnosis if we don’t speak out, because nobody will ever know how to meet their needs.
The parents who do speak out are often shamed and judged. When what they need is someone to listen and understand how hard it is.
I don’t want our most vulnerable people, who just need understanding, to once again be hidden away, and forgotten about.
Every parent knows their own child’s diagnosis, needs, struggles, and strengths.
A diagnosis isn’t a competition. A diagnosis can be a chance to educate the world about your own situation, and try to make the world a better place for all of our kids.
We won’t be silenced.
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 Freddie’s Special Needs Journey.
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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, subscribe for exclusive videos, and subscribe to our newsletter.
