AUTISM: from denial to embrace

“I think we use a lot of words and labels when trying to describe people: ones with autism, ones without autism. In general, I think that labeling people is a major issue, and people don't understand the power of language.” Nikki Reed

I pondered a lot before sharing these thoughts. This is a very personal topic for me and not only am I not a big fan of oversharing on social media, but is LinkedIn really a place for this?

However, I decided to go against my “primal instincts” for a few simple reasons:

-         1. Lots of stereotypes are linked to autism (hence the deliberately provocative picture of “Rain Man” at the top of this article) and it’s kind of my thing to debunk myths ??

-         2. For reasons that I will explain later, I’m quite upset (for lack of better words) with the whole perception around this neuro-difference so if I do not participate in the mind shifting effort, who will?

-         3. The World Autism awareness week is actually this week so if not now when?

The tipping point however occurred almost like an epiphany. I was going into work last week and I noticed, for the first time, the following:

I walked past this store 100s of times and never paid attention. As unbelievable as it is, in some people’s minds, Autism is a disease and as such can be treated… No need to say that I will never set foot in that store (or maybe only to have a discussion with the owner but I doubt I’ll be able to keep my cool so maybe not a great idea) but more than that, it’s how this seems perfectly normal and acceptable, this insidious “laisse Faire” or “nonchalance”, that infuriates me.

So let’s start here maybe: what is Autism?

Here’s what you can find on the Autism Spectrum Australia webpage (https://www.autismspectrum.org.au/about-autism/what-is-autism):

“Autism is a condition that affects how a person thinks, feels, interacts with others, and experiences their environment. It is a lifelong disability that starts when a person is born and stays with them into old age. Every Autistic person is different to every other. This is why autism is described as a ‘spectrum’. Aspect describes autism as a different brilliant?”

Even here they have it somewhat wrong (IT IS NOT A DISABILITY!) but at least they make it clear it is not a disease to be cured, like the flu or a common cold.

Once again, good old Wikipedia has a slightly better and more balanced view (https://en.wikipedia.org/wiki/Autism_spectrum) as they insist on the spectral nature of Autism.

 “People think about autism as something with kids. Well, those kids grow up.” Jason Katims

So, why all this? I’m going to put it out there, plain and simple: I’m the proud father of two amazing kids and it turns out that both of them are on the Autistic Spectrum. In a way, I live with autism daily, for the better and for the less good.

My son was diagnosed when he was about 6, and straight away I went into denial. I suppose my “rigid” view of the world and all my preconceived ideas came rushing all at once (I always liked to think I could see past stereotypes, be empathic… quite the reality check in hindsight ?).

I’m not proud of it, but I’m not ashamed either: it was a necessary step for me to move from.

As I was still struggling with accepting what I then still considered as my son’s “condition”, BOOM! My daughter gets diagnosed as well, she was about 5 at the time. One would think that it gets “easier” but in this case, quite the contrary occurred: Autism manifests very very differently in boys and girls, so with the exact same diagnosis and 2 completely different traits and behaviors, it is very easy to think that the doc may have got it wrong.

If I try and analyse candidly why I went into straight up denial, it clearly stems from own self-talk at the time:

-         My kid is Rain Man

-         My kids will struggle all their life

-         They will never fit in

-         It will be hard for us to raise them

-         Will they ever be happy?

-         …

Pretty much all of the preconceived ideas that the “world” have put in all our heads without providing any shred of evidence… Unfortunately, the case for many mass biases or culturally based general beliefs.

To add to that, we also had to deal (still have to) with other people perceptions. Let me illustrate with a few comments I received (true stories) when sharing with a third party that my son or daughter were on the Autism spectrum:

-         “No, they don’t look like it – get a second opinion”

-         “it must be mild then”

-         “I saw them at the park the other day, they were normal”

Now it sort of makes me laugh but on the spot, as you struggling yourself, it simply irritates at best and make you doubt at worst.

Thanks for me and for us, my beautiful wife was much less obtuse and much stronger and helped me (and sometimes forced me ??) to see things differently:

- 1. Trust the facts, read, get informed: the picture is quite different from your narrow-minded reality (mine)

-  2. Autism is a spectrum, no one size fits all:

-         3. They are and will always be my children and I will love them unconditionally always – focus on that

“Who do you think made the first stone spears? The Asperger guy. If you were to get rid of all the autism genetics, there would be no more Silicon Valley.” Temple Grandin

So, little by little, through ups and downs, I begun to focus on the “what I can do now” instead of the “what may happen tomorrow” and I stopped listening to the millions of “specialists” out there (it is actually scientifically proven that the less someone knows about something, the more expert they think they are… look it up).

It is a journey, I’m nowhere near where I would like to be and have the wisdom of Buddha, but I’m for the long haul, and hopefully my kids do know it!

I’m not clairvoyant, I do not know what the futures has in store for us but who does? In the end, this is how I shut down my self-talk:

-         “My kid is Rain Man” – Career Opportunity as a professional Gambler

-         “My kids will struggle all their life” – Who isn’t?

-         “They will never fit in” – Fitting In is overrated these days

-         “It will be hard for us to raise them” – well, it’s hard for any parent

-         Will they ever be happy? – That depends a lot on us

We now know of many famous people on the spectrum (https://www.appliedbehavioranalysisprograms.com/historys-30-most-inspiring-people-on-the-autism-spectrum/) but in the end, neurodiversity is in all of us. After all, a difference can only exist Versus a certain “norm” and I choose to refuse the paradigm that it is imposing on us. Instead of focusing on categorizing individuals according to arbitrary parameters, I chose to believe that society benefits greatly from diversities and brings richness to it. In turn a richer society will always benefit its members. Deep right?

 “Diversity: the art of thinking independently together.” Malcolm Forbes