There is a lot to be said over the incorrect research that has been done, published and recommended as the norm for autism over the years. It might seem ridiculous now, but it wasn't that long ago that autism was thoughts to believe by "cold" parenting or to be affecting only boys from the middle class. Urgh, what?
Bianca Toeps's "but you don't look autistic at all" is a brilliant read, sharing her experience as someone who is Actually Autistic.
Here as some things I learnt thanks to her (and her book!).
What is the correct way to refer to it?
Autism, Asperger, ASD, PDD-NOS ...which one is right. Bianca explains "Since the DSM-5 came out, everything has been called autism spectrum disorder. As a consequence, Asperger and PDD-NOS no longer exist as diagnoses but have been included in the umbrella term autism"
Incorrect information that needs to be set straight (like yesterday).
Imagine beyond told you are a cucumber when you are actually an orange. "I smell like citrus and I am not green" you might object. Extrapolate that to your whole personality and you might have an idea of what Autistic people experience to this day.
An example is the "Theory of Mind" with its leading theory that people with Autism don't have the ability to realist that other people think or feel differently than they do or that they "are unable to observe their own thoughts". As Bianca aptly puts it "it's shit", but equally provides an account of her own experiences, explaining how many times over stimulation, and the need to close off as a result, is what is labeled incorrectly.
The same theory then focuses on communication differences from the neurotypical point of view. Bianca further explains " The experiment takes place in a social setting created by and according to the standard of neurotypical people. That will inherently affect the results. Analysis of the video recordings show that researchers don't pick on certain non-verbal signals displayed by the autistic children." She then adds "Autistics among each other usually have far fewer communication problems".
One size fits all, once again seems to fit nobody.
A different definition, with findings that resonate with the author and other autistic people is the "World Theory" by Henry and Kamila Markram. whose son is Autistic. Bianca shares that according to this theory "more connections are being made in the autistic brain and brain cells respond more emphatically to each other. There's a stronger response to stimuli, thoughts run rampant quicker. In short: the world is extremely intense for autistics."
Tips from Bianca on how to better communicate and work with somebody who is Autistic:
- One question at a time. Make sure the question is phrases as question as well the question mark at the end is clear.
- Cut the small talk and preference to dive straight in.
- For important topics to discuss Bianca shares she actually prefers an email or text as it gives her the time to think things over and protect her boundaries.
- Don't force people to make eye contact, to often is another form of over stimulation.
- Make sure to set the correct expectations, especially if organizing an event, conference. However, don't make promises you can't keep and make clear where things might not go to plan.
- Autistic people might have hyper focus and passion for certain things, support them and show curiosity.
- Remember over stimulation that can include smell, light, hearing etc. Don't touch without permission.
My short share doesn't even begin to cover the extensive great points from Bianca, her shared experiences and so much more. She recommends in order to understand more to follow #ActuallyAutistic on social media as movement from Autistic people sharing their experiences vs potentially false narratives from outdated studies. Goes without saying, but will say it just in case...and make sure to read Bianca's book.