Uniquely Autistic: More Than Awareness, Acceptance

Uniquely-Autistic
As a non-autistic, I never really took the time to understand or be aware of the experience of a uniquely autistic person. When your life isn’t directly touched, it’s easy to feel removed, almost remote, from that kind of ‘other’. Just as a straight person might feel removed from the experiences of a gay person, or cisgender from transgender, or neurotypical from neurodiverse. Unless we are directly impacted within our personal lives it is common to have blind spots with regard to experiences of life that differ from our own or the perceived ‘norm’.

That’s why, as a non-autistic, I though Autism Awareness Day was valuable. It was a day when a little light shone on a minority community that said, “Your experience of life is not universal.” But what it also tends to say is, “Look at how these people suffer, feel sorry for them.”

I didn’t know it then, but Autism Awareness Day doesn’t reflect a true picture of autism. It doesn’t raise real awareness because it doesn’t integrate the voices of autistic people. In fact, it often highlights and teaches that they lack a voice, lack an opinion, lack a sense of self and self-experience that is blind to the person within. Sometimes, autism awareness, advocates for fear and pity, rather than understanding and acceptance. It isn’t truly autism awareness at all, because it doesn’t portray a full and accurate representation of the autistic reality.

How Personal Impact Heightens Awareness

In the past few years, I’ve very much been thrown into the deep end of the world of autism through having an autistic child. My experience of that world has differed significantly. And, I’ve learned that true awareness should start with acceptance.

My son, Josh, was born in very normal circumstances. He was a perfectly healthy, full-term baby, born after a long but uncomplicated natural birth. In his early days and months we noticed differences, but we put those down to his being a boy and having his own unique personality. He wasn’t his sister, and we didn’t expect him to be. His language seemed to be slow to pick up and he didn’t fuss about being wet or soiled. He was docile, quiet, and while I was a little concerned that he wasn’t talking he seemed to be developing relatively normally. If anything, he was the ideal baby because he rarely cried or fussed, didn’t demand attention, and was content in his own world. The child health nurse assured us his speech would get there in time. After all, babies develop at different rates. There was nothing to worry about. He was perfectly healthy. In fact, there were several quirks in his early years that didn’t ring alarm bells for anyone but myself so I let it go, trusting that, as his teachers, school psychologists, and speech therapists assured me, he would, “get there eventually”.

The trouble was, I wasn’t very autism-aware, and nor were the people who worked with my son. They dealt in neurotypical environments with a variety of developmental delays and some of what my son experienced could have been attributed to any of those. His teachers saw his sensory overwhelm and restricted patterns as separation anxiety, his speech therapists saw his language delays as specific language impairment, his psychologists attributed his social and learning difficulties to low IQ, and his reading difficulties to dyslexia. As a collection of comorbid conditions he just seemed like the unlucky recipient of the hard hand life sometimes deals. We didn’t have a bigger picture, so we focused on the sum of parts. We tried to engage him socially, we tried to stimulate his speech, we tried to break him out of his patterns, and nothing really clicked because we couldn’t identify the cog that held those parts together.

Uniquely Autistic Autism Awareness Day, Autism Acceptance Day
When Joshua’s anxiety in the school environment had reached crushing point I took him out of school and started homeschooling him. For the first time, I looked at an overall picture to see how we needed to progress so that every aspect of his learning and development could move forward. What I saw was something that seemed to be a fusion of complicated parts. Rather than a series of individual quirks, there were links and triggers for his behaviours. My curiosity drove me to investigate those traits and behaviours and they kept coming back to a central hub. Through my own research I became more aware, and for the first time I really acknowledged the possibility that my son might be autistic. It was hard to face because although I didn’t know much about autism, what I believed about autism, what had been raised up as the example of autism in the media for autism awareness, was not a very pleasant representation.

The Disconnect Between Awareness and Acceptance

My son didn’t look like the autism awareness campaigns. He doesn’t present like the low functioning medical warning autistic or the high functioning genius poster child autistic. The kind of autism that makes it into autism awareness campaigns didn’t reflect my son at all. But, through research independent of those campaigns, and thanks to finding the blogs, YouTube, and Facebook groups of autistic people, I learned that autism isn’t just a spectrum of ability. Autism is a spectrum of traits, and on traits Josh was ticking a lot of boxes.

Autism is a series of traits, and each of those have their own spectrum that leads to a masterfully diverse autistic population. Autistic people don’t have an overarching aspect that clusters them as a single entity. They are each unique, with a unique manifestation of behaviours, interests, abilities, and differences. In fact, autistic people are as unique and diverse as non-autistic people. They do have voices, they do have minds, and hearts, and dreams.

As a non-autistic, I still very much feel we need to raise awareness, because through true awareness we have a better opportunity to learn and understand neurodiversity. I also know that awareness starts by accepting the voices, and hearts, and dreams of autistic people into the message we show the world.

Today, I’d like to showcase the diversity of autism. It’s a way to say, “We are what autism looks like, and we are awesome as we are”. So, with his permission, I’ll start with a snapshot of what makes my son uniquely autistic. Then I invite autistics or other autism parents, with permission, to share in the comments their own uniquely autistic snapshots.

Joshua: One Uniquely Autistic Snapshot

My eleven-year-old son is a bright light in a sometimes dim universe.

He takes things at face value and is a master of logic. This means he has trouble with games like hide and seek, but is a master at chess.

He wants the world to make sense, for people to be nice to each other, and to feel connected without feeling like you have to meet face to face. He knows that there is a real human being on the other end of a computer screen when you’re playing games online and wants other people to always remember that too.

He is a series of little cups, light can be too bright, noise too loud, taste too strong, texture too rough, smell too smelly. When it’s too much he wants to curl up and hide from it because seeing the noise of a busy world hurts his head. When he does this he does it on the spot, in a foetal position, and while he looks like he has disconnected from the world he is still very much aware and listening to every word. It hurts if you criticise his need to retreat but he can’t tell you that because when he is overwhelmed he loses his words.

He loves penguins and finds everything about them fascinating. He’s also a fan of Pokemon, Minecraft, and most YouTube Let’s Play videos. He loves to run and move but doesn’t always do well keeping track of other people or things when they run or move which is why he likes parkour but not football.

He loves watermelon best at room temperature and in small cubes rather than slices. He’s a grazer eating small meals frequently and like other boys his age never seems to really stop eating.

He leaves cupboard doors open because he is goal oriented and the act of getting the bowl out of the cupboard accomplished the goal so the steps that come after it aren’t important. He needs things broken down into individual stages because cooking scrambled eggs involves about 30 distinct steps rather than one single action. For the record, having a shower is 29 distinct steps, brushing teeth is 15, and cleaning your bedroom is so complicated a task that it can only be done when each of the series of actions is directed.

He very much needs to know “what’s the point” about anything he’s expected to do and “because I said so” is not enough of a reason.

He likes having his scalp stroked by someone he trusts but doesn’t like having his feet touched by anyone.

He takes about thirty minutes to wake up in the morning and doesn’t usually talk or eat before that but likes to start the day with a hug. He’s a night owl and sometimes his legs won’t go to sleep which keeps the rest of him awake. Sometimes that means he’s waking up at noon rather than in the morning.

He’s an optimist, loves to have fun, loves to play together, and puts much more value on right now than on yesterday or tomorrow.

All of this is just a glimpse, a snapshot. Because, yes, Joshua is uniquely autistic.


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