What it’s like to be Autistic

A glimpse of what it’s like to be Autistic, by Charl Bailie.

I wrote something on what I felt it was like to be autistic. I am a 49 year old female recently diagnosed and I wrote this when I was feeling down about something and wanted to make a little light of it. There is obviously so much more to being an aspie than what I wrote, but here it is.

From what I know of the Aspies in my life and online, this seems pretty accurate, yet lighthearted and humorous.

Managing dysregulation

We have autism all wrong: The radical new approach we need to understand and treat it, an excerpt from “Uniquely Human: a different way of seeing autism” by Barry Prizant.

Instead of just managing behaviours, he suggests listening carefully, observing closely, and seeking to understand the child’s perspective and experience.

Usually the answer is that the person is experiencing some degree of emotional dysregulation. Our neurological systems help by filtering out excessive stimulation, telling us when we’re hungry or tired or when to protect ourselves from danger. People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.

To be clear: Difficulty staying well regulated emotionally and physiologically should be a core, defining feature of autism. Unfortunately professionals have long overlooked this, focusing on the resulting behaviors instead of the underlying causes.

Here is the important irony: Most of the behaviors commonly labeled “autistic behaviors” aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally.

Advice to parents of newly-diagnosed

Advice to parents after an autism diagnosis, by ASD Dad. A very positive list!  Includes tips like:

  • nothing about your child has changed- they can just access services and support,
  • presume competence,
  • get to know teens and adults who have autism- they have great insights,
  • let go of your expectations and live in the present,
  • remember that your love and acceptance for your child is what matters most.

Autism, from an Autistic perspective

Autism, from an Autistic perspective, by Chris Bonnello (of Autistic, Not Weird blog). I have posted a few of Chris Bonnello’s articles previously, and really enjoy reading/hearing his perspectives. This clip is just as good- the only problem with it is that it’s an excerpt of a longer presentation, called “An Autistic’s Top 20 tips for working with Autistic people”, and only shows the first four tips! I won’t include spoilers here, but he’s a very engaging and humorous presenter, and gives great examples to support his points.

Focus on positive

Reclaiming the dignity lost in a diagnosis, by Cas Faulds (We are like your child blog).

My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is.  

Her recommendation: Rewrite the professional report using positive (neurodiverse) language, rather than negative/deficit (pathology) language- and she includes an example.

You are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once.  When you do, you want to do that from a place of strength rather than a place of weakness.  You want to highlight your child’s unique potential rather than place limitations on them.