The Forgotten Side of the Spectrum
Severe Autism…
I did a brief radio interview recently explaining our version of autism. I discussed the isolation, the lack of help and support, and the lack of understanding and acceptance for severe autism.
Tim Nicholls, who is the policy manager for the national autistic society, responded to my radio interview yesterday.
I’ve listened to his response. I want to talk about this part that he said below…
“It doesn’t need to be something that is always holding them back, with the right support, depending on their needs, children with autism can grow up to live rich, fulfilling lives, and be as independent as possible”.
This is a great attitude to have, but yet again I feel like our version, severe autism is being swept under the carpet and not being recognised!
It’s highly unlikely that my son will ever leave home. I’m not negative, I’m realistic.
You only have to read some of my blog to see that I’m Freddie’s biggest fan. I encourage him, I support him, I don’t limit his potential, I fight for him to receive the best support and equipment.
I’m his voice, and I love him more than anything. I’m always hopeful, but I’m also realistic.
Severe autism level 3 is my son’s diagnosis, along with other complex issues.
Level 3 autism…
“This is the most severe level of autism. According to the DSM-5, those at this level require very substantial support. In addition to a more severe lack of communication skills, people with level 3 autism also display repetitive or restrictive behaviours”.
Most children with this level of autism have very complex issues and learning disabilities.
People are too afraid to admit that some autistic children will never learn to be independent.
They are afraid of offending people.
This isn’t offending anyone. It’s raising awareness and acceptance for those on the spectrum who will always need supervision and care.
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 isn’t being negative. It’s many families reality, but nobody is 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 isn’t ready to accept and acknowledge those children and adults, who don’t turn into a ‘miracle’ story.
I always have hope for my son’s future, but unless you have a child who is severely autistic, has severe learning disabilities and other complex issues, you can’t even begin to understand the challenges some families face.
You can sympathise, but you can’t relate because you don’t have the same experience.
We see celebrities who have high functioning autism/Asperger’s advocating, but where are the severely autistic adults who are non verbal, not able to live independently, and have learning disabilities?
They are hidden away, or forgotten about because to some people, they aren’t the ‘best’ representation of Autism, and it’s so wrong.
My child may never be independent, he may never speak, and although he has many struggles, he has many strengths.
If my child grows up to be dependent on others for his personal care needs, if he’s non verbal, and needs constant supervision, I want the world to accept him and support him.
This won’t happen until we stop pretending that severe autism doesn’t exist.
We don’t get any respite or help, and Freddie is 5 years old. I can’t even begin to imagine how challenging adulthood is going to be, when support isn’t even offered to us now.
I don’t want to imagine Freddie as an adult in a world that is still ignorant to severe autism. We will fail children and adults like him if we don’t speak up.
If we don’t educate the world about this version of autism, and start accepting the fact that severely autistic children and adults exist, then the world won’t ever know how to meet their needs.
These vulnerable people who need understanding and lifelong care, will once again be hidden away, and forgotten about.
We can’t let that happen.
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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