The desired outcome of awareness is for people who are not on the spectrum to understand and facilitate – or just allow – the growth and development of people on the spectrum. However, to allow for the good to take place in a way that is beneficial and advantageous for all, we must be aware of the bad and ugly as well.
The Good: One story which exhibits the good in Autism Awareness
It’s called the Nesel Pack and it was created by six University of Minnesota students. Their inspiration came from seeing fellow students with autism and other learning disabilities, and so they thought to create something as simple as a backpack.
The Nesel Pack features straps that mimic a person hugging, pouches for electronics and weights. The backpack includes clips for any sensory tools a person on the spectrum might need and a slot for a name card. The team designed the backpack for students with autism, and they interviewed more than 100 parents to get it as right as they could. The trial back packs were trialed by 10 students on the spectrum, they got feedback and they are preparing additional trials.
The Bad: One story which brings to light the dark side
The monster inside my son: Tells the story of Andrew, who has autism. His parent describes how he has evolved from a “sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.” It is heartbreaking to read about how Andrew hated school, a transition programme, because he was ‘downgraded’ from completing pre-calculus classes to being taught how to make correct change. He couldn’t follow through with two jobs, private job coach described him as ‘challenging’ and therefore the transition programme was their only viable option. One morning, Ann says, “my son picked me up and threw me across the room.” Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand, he attacked staff members at the group home, and his 14-year-old sister.
I advocate for Autism to be accepted in all shapes and forms; to make it the exceptional exception; and to eliminate ignorance. Yet, there are no illusions of innocence here. I know Autism can be violent – I have seen in in my brother, i have seen it in kids that my brother went to school with and I have read countless stories that investigate the causes. Christos still hurts us when he doesn’t get his way – last August he squeezed my hands so hard that they were swollen for 2 days. He has attacked his teaches numerous times, leaving them with bleeding scratch marks and bruises. He hits us when he is frustrated, often ignoring our efforts to tell him how much he is hurting us.
There are so many stories of people on the spectrum attacking their family members. Autism can be violent, but being neurotypical can be violent as well. We should focus more on making treatment accessible, and funding better research on Autism rather that clinging on violent accounts of autistic children and adults.
The ugly: One ending to 3 stories and the ugly truth
Jude Mirra, was a high profile case last year. Jude’s mother fed him prescription drugs and killed him in a hotel room in New York. She has been sentenced to 18 years in prison. Gigi said “Well one morning you wake up and the child is gone. It’s like they’ve been kidnapped and when your child is kidnapped you’re forever looking for them and wondering where they are and you can’t mourn“, describing what autism felt like to her. She killed Jude to ‘save’ him from his abusive biological father who had threatened them.
London McCabe was thrown off a bridge by his mother. McCabe had been planning the murder for months, searching for tips online and researching a defense of insanity. “You said I was an obligation and London was a burden” Jillian wrote in a letter to her husband.
Katherine McCarron was suffocated with a plastic bag after her mother failed to suffocate her with pillows three days earlier. In court she described her overwhelming guilt, she felt responsible for Katie’s autism because she allowed the child to get vaccinated. “Maybe I could fix her this way, and in heaven she would be complete“.
What kind of world do we live in where parents can be made to feel so worthless, so alone, so ignored by authorities, the State and their peers that they are made to believe that death is their, and their child’s, only option? The ugly stories are the stories I look for – the ones that make reality so fearful, so scary to live. This is what drives us, my family, my autistic community to get out and talk about Autism.
If we want full awareness – we want all stories to be heard. To create, to multiply good stories we are inspired by the bad, the ugly; the stories that haunt us. We are driven by the need to ENSURE that our kids grow up in a world where bad and ugly stories are in the past.
We have to help make therapies accessible. We have to make information on Autism readily available. We need to make carer support compulsory. We have to make sure that no one will be left behind.
This week #Project324 received lots of birthday messages and love from Kenya and Iraq. The last cards were distributed in Turkey, Cyprus, the UK.
In Istanbul cards were circulated at:
Besiktas-Kadikoy Ferry & Port
Wales and Dubai cards made an appearance on a couple of cars