On April 2nd 2017, people across the globe will be lighting up blue and taking part in this year’s annual Autism Awareness Day.
On the surface this international campaign appears to be a good thing, aiming to raise awareness of a condition that most people have heard of but very few really understand. Research is desperate to find a cause, parents are desperate to find a cure. But beneath all of the emotional stories pushed out over social media, a group of people are fighting to be heard. They want people to understand what autism really is and why another awareness campaign is not the answer.
Why Is Awareness A Bad Thing?
To anyone new to autism, awareness makes sense. People should know more about this condition and as such we are bombarded with stories of children trapped in their own world, unable to speak and suffering from lack of empathy or love for others. Parents and family members of the children tell the world about their autistic child, speaking for them they share stories of shopping mall meltdowns, faecal smearing and violent behaviour. We hear about the financial burden of an autistic child as care-givers desperately try to find the treatment that will make the difference. A cure is mentioned over and over again as campaigners, doctors and other professionals tell us there is an epidemic of autism that is taking our kids and destroying our families.
But dig a little deeper and it is clear this type of campaign has serious ramifications based on fear, lack of understanding and an absolute absence of the voice that matters most; the voice of autistic people themselves.
Autistic People Want To Be Heard
Autistic people from all parts of the spectrum are shouting to be heard. Some are labelled as ‘high functioning’ meaning they can articulate well so society wrongly assumes they have barely any difficulties. These autistic people can communicate clearly and with great understanding they tell us what it is actually like to be autistic. What surprises people more is those they would deem ‘low functioning’ or ‘severely affected’ who have found their voice and are speaking out. People like Carly Fleischmann, who was labelled as having severe cognitive delay and was non-verbal. Carly found her voice when she began typing on a laptop and amazed the world when it was clear she was highly intelligent (her IQ has been confirmed at 120). She is now sharing her experience of autism with the world and helping to eradicate the misconceptions of the condition.
“How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.” – Carly Fleishmann, carlysvoice.com
Autism awareness should not be about finding a one-for-all cure. If you cure autism you deprive the world of it’s greatest thinkers, it’s most creative artists and it’s most empathic counsellors.
We Need Understanding NOT Awareness
Focus should be on understanding how society needs to change in order for autistic people to be themselves. Wheelchair users are better provided for now because public places provide accessible spaces so why can’t society adapt its public spaces so that autistic people can be comfortable?
Awareness should not push the idea of a scary epidemic. Campaigners should be explaining that better understanding of autism in infancy is leading to earlier diagnosis and people who were once disregarded as quirky and introverted may be experiencing serious difficulties that require suitable support. Studies have shown that autism has always been much more common than typically thought. We are not facing an epidemic, we are blessed with a better understanding of how autistic girls present themselves, how mental illness and co-morbid conditions can mask autistic traits and that a diagnosis later in life is more than simply wanting a label.
We Want An Autism-Friendly Society, Not A Cure.
Awareness campaigns focus on raising money to fund research into finding the gene for autism. Money is poured into the science behind autism in the hope that the holy grail will be found and the mysteries of autism will be unlocked forever. However, people with autism will always have autism regardless of what causes it. Money should be spent on providing better support services to people with autism. Better provision of education support, services that help autistic people in work and encourage employers to give autistic people opportunities to prove how capable they are.
As Facebook fills with stories of small boys lining up cars and flapping their hands it is important to share the stories of the adults who are respected as top innovators in their professional field…who also flap their hands.
Autism is not a childhood disease that goes away with age. It is the woman who is diagnosed in her mid-fifties and gains immense relief as her life finally makes sense. It is not just the adults who require specialist residential care, it is also the young woman who has learnt to mask her autism in public but suffers extreme meltdowns in the privacy of her own home. It is not just the parents who are fighting for treatment for their young autistic child, it is the parents of the woman in her forties who is waiting for a diagnosis having spent a lifetime being misdiagnosed and mistreated in the mental health system.
Have You Listened To An Autistic Voice?
Everybody has heard of autism, we don’t need to make anyone aware it exists. We need to accept that autistic people have a voice and it’s time they were heard.
Autism Acceptance Month is an alternative to the Light Up Blue campaign and is about showing acceptance of autism and the diversity it brings to our world. To show your support, choose red instead of blue this April 2nd. Wear red, turn your profile red, use the hashtag #autismacceptance and search for articles and posts by autistic people using the hashtag #actuallyautistic.
*I was diagnosed with Autism at the age of 35yrs. You can read my diagnosis story here.