When H was first diagnosed on the Autism Spectrum, I remember my own parents expressing concern about the potential limitations that a label like this would put on my child. There was a time when a label was considered such a negative thing – and if it were a limit – I would agree even now. But the label of autism does not have to be a limiting factor if it is considered an entry word into understanding the experience of another.
My child is on the Autism spectrum – but that is not his defining feature. No… to define him I would be more inclined to use words such as a Lego genius, builder, problem solver, giant hearted, sensitive, imaginative, jokester, dog loving, puppeteer, sweet, bird watching, story loving, movie memorizing, mechanical minded, science fiction/fantasy loving, sound and voice impressionist, Jedi with a keen appreciation for music, camping, and toilet humour.
What the word autism adds is a way of understanding that he thinks and processes and accesses information differently. There are certain core challenges that those with autism have in common. In the literature these are often referred to as core deficits – but philosophically, I feel a need to avoid deficit based language.
Here are a few of the core challenges:
Being Autistic means that H struggles with understanding the experience of others – so instead of condemning him for his mis-reads (or didn’t-perceive-a-need-to-reads) we help him to understand the perspectives of others, and then generalize this information to new situations and experiences.
Being Autistic means that it can be difficult for H to read a social situation – and transitions can be stressful because we are shaking up comfortable and forcing him to get his footing anew, so we have worked to create in him a craving for novelty and excitement about the unknown. We give him lots of warning when we are going to make a change, and we know that we have to be aware and read his behaviour because he will tell us (some way or another) if it is too much.
Autism means that H does not process and understand social thinking from an intuitive place, so we break things down, give him tonnes of time to process, and teach him cognitive strategies so that he is able to find success in the social world. We understand that if he is really upset – these skills will essentially disappear until he calms. Imagine yourself being asked to recite the 9 times tables if you have just been in a serious car accident and you will understand that your cognitive skills are not as accessible when you are upset. We are also aware that if social thinking is stored as a cognitive skill instead of an intuitive response – it is also a huge cognitive load to carry on top of an academic load.
This is just a glimpse of the child – He is separate from autism and yet he is not. It colours his experience and ours as well. I do not rail against it… even though our journey can sometimes test me to the core. If I could pull the autism out of my child – I wouldn’t. But if I could change the way the world accepts and responds to a child like mine – that I would do in a heartbeat. If we can change the way that those with neuro-cognitive or social thinking differences are treated when they are adults (when being cute or little no longer affords any sort of protection…) then we will be preparing the way for our children’s future.
And that is what this post is about- It is in essence an AA (Autism Awareness) intervention!!
April may be Autism Awareness Month… but it seems to me that autism goes beyond these 30 days…
Please help spread awareness… and acceptance… and understanding too
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2011)