Autism Is Not A Dirty Word

It is surprising and saddening that in 2018 Autism still carries a stigma.

There is increased awareness of autism and growth in diagnosis- however, the spectrum of Autism remains largely misunderstood by many in the community,

So why you might ask?

The stigma to Autism goes way back! Steve Silberman (an award-winning investigative reporter) unearths the secret history of Autism in his book NeuroTribes

The word Autism was used in 1908 to describe childhood schizophrenia.

In the 1940s Hans Asperger used the term Aspergers for a “milder form of Autism” The knowledge of autism was suppressed for 50 year thanks to child psychiatrist Leo Kanner.

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We have seen the Autism spectrum classified as a mental illness, we have read stories of children left to freeze in the snow, targeted by the darkest social-engineering experiment in history, gassed and abolished. Distressing is an understatement, I don’t know about you, but even the thought of this raises bile in my throat.

Bruno Bettelheim declared “Refrigerator parenting” in the 60s as the reason for autism. It was mum’s fault and bad parenting. We have heard that old chestnut before right?

In the late 80’s Rain Man movie was released starring Dustin Hoffman, Rain Man created awareness of autism.

However, it also led many to believe that all people with autism were geniuses who could count matchsticks before they hit the ground and had a better understanding of numbers than Pythagoras himself. A wonderful portrait, however, it also created a misconception.

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It wasn’t until 1980 that ‘infantile autism” was listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM) for the first time; the condition was also officially separated from childhood schizophrenia.

The late 90’s and 2000’s saw the Vaccine myth take the credit for causing Autism.

The hysteria of Autism as a disease spread faster than a gas fuel bushfire in the middle of summer. We now know Autism has always been, well before immunization even existed. We also know that some of the most creative and incredible minds that have existed that helped form the world as we know it were on the spectrum- shall we tell them they were diseased and something was “wrong” with them? They too lived in a time when children on masse around the world died from polio, measles and chickenpox and diphtheria, mumps… ok I said I wouldn’t get into it, so I won’t.

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When Autism finally became its own diagnosis- the model used to classify it was the DSM- Diagnostic and Statistical Manual of Mental Disorders.

To this day the diagnostic tool for Autism- the DSM5 is based on the deficit model. Take a moment when you say Autism Spectrum Disorder. Yep. Disorder.

Read through the DSM5 and you will find it littered with negative language such as –

“Persistent deficits in social communication, Deficits in social-emotional reciprocity, abnormal social approach, failure of normal, inability to initiate or respond to social interactions deficits in nonverbal communication, abnormalities in eye contact…deficits in developing, maintaining and understanding relationships…”

If you read this diagnosis and applied it to a child- or yourself, you would grieve. The DSM perpetuates fear and frames Autism in the worst possible way. It’s brutal and unnecessary negativity is appalling and fuelling the stigma attached to Autism.

According to the Australian Bureau of statistics 2015, there were 164,000 Australians with autism, a 42.1% increase from the 115,400 with the condition in 2012. Changes in clinical diagnostic criteria implemented in 2013 and moves to questions identifying people with disabilities in the 2015 SDAC may have had some impact on the prevalence, relative to 2012.

News headlines would have us believe that Autism is an epidemic endangering our children and spreading like leprosy amongst the camp!

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When in actual fact, diagnostic criteria, access to health professionals, etc. have made getting a diagnosis achievable.

The media sensationalize Autism. News stories with wonky camera work, dramatic music, and catchy headlines portray Autism as a scary epidemic. Autistic people are shown as helpless, sometimes violent and angry and their families in despair.

Add the community dialogue of

“It’s a fad!”

“We’re over-diagnosing.”

“Autism doesn’t exist!”

“Oh yes but all kids do that!”

“Leave the kids with me for a week- I’ll sort them out.”

“They just need a good smack.”
It just keeps giving.

There have even been politicians who have pushed for segregation with calls of the education department not being able to cater for kids on the spectrum.

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Parents and families are closeting Autism. Why?

For fear of their child being labeled.

There are therapists and practitioners teaching children to mask their Autistic traits so that they can “fit in” and be accepted,

Further adding shame that one must hide their Autism to be included.

This cycle continues.

But. It NEEDS TO STOP.

What if you were taught the real Autism? The real Autism that is just different wiring in the brain.

That Autism is a person to be loved.

That Autism is different. Wonderfully different.

That Autism can be challenging but is not a deficit.

What if you understood that behavior is communication and that there is always logic to a behavior?

What if you thought of Autism as an attribute?

What if you learned HOW to be inclusive?

If you truly understood Autism, you would not fear it?

If you understood Autism as different and not less, you would open your mind to accepting Autism.

Consider the idea that a meltdown is a response to an overtly stimulated, rushing, a loud world that looks upon you with pity, sometimes disdain, or perhaps you are a burden.

I wonder how you would cope when your brain is wired differently to those around you? I don’t believe it would make it better, in fact, I believe firmly that the symptomatic facets of autism that can stimulate stress for parents will be significantly reduced if exclusion and stigma reduced and inclusion and a balance was increased.

Imagine if the diagnostic criteria highlighted the magnificent positives of Autism!

You would open the door supporting the challenges people with Autism face.

Autism would be celebrated.

You would change the world.

And you can.

It’s starting now.

It’s time for change.

“Remember: autism is not necessarily a deficit, it’s a difference. Just be kind to people, just give people time, listen”.

Jeanette Purkis.

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Five ways to support a parent with a child on the spectrum

Frazzled? Somewhat confused, a tad exhausted and emotionally drained? You are not alone, and it isn’t always because of the kids.

According to the Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers (SDAC), an estimated 164,000 Australians had autism in 2015.

This number continues to grow as getting a diagnosis becomes more accessible. Many families with an autistic child(ren) report feeling isolated, exhausted and lonely.

However, there are simple ways we can all support parents and families with autistic children. 

1. Believe.

If a parent mentions their child has autism- please believe them. Refrain from the old-  it’s not autism, the kid just needs to be pulled into line, or “but they doesn’t look autistic”- or the “it’s just bad parenting”. Please don’t think that autism is a result of bad parenting, vaccines or how many cheezels Mum ate when she was pregnant. 

Chances are if a parent says their child has autism… they have autism.

Kids Happiness Fun Smiling Children Concept

In your empathetic quest to relate to said parent, please don’t mention the movie Rain Man, your cousin that has 5 kids on the spectrum, the kids you once knew with autism, the guy from the post office that has autism and every other person that may have autism because each person on the spectrum is different. Different in personality, different interests, Different full stop.

2. Learn about Autism- ask questions. Get to know the child’s interests.

One of the greatest ways to support a parent with a child on the spectrum is to learn about and understand Autism.

Once you learn that Autism is just different wiring, you’ll be on your way to understanding the many positives that children on the spectrum have. You will also have a better understanding of the challenges kids on the spectrum face.

For example:

  • Sensory issues- noises, smells, lights, crowds, food, clothing. Sensory seeking/avoiding… the list goes on,
  • Anxiety
  • Language and communication (speech)
  • Social skills- challenges reading facial expressions and social cues. Challenges engaging in conversation or socially. This can be very overwhelming, exhausting and generally hard work.

Through understanding possible triggers, behaviors, communication and interests you will be able to offer support.

There is nothing more wonderful than another person taking the time to connect and help with a child.

If that means embracing passions (ranging from washing machines, Thomas the tank, clocks, My Little Pony, fans, craft..ANYTHING!)

Make an effort to connect via an interest. This is like a porthole into the child’s world. Let’s call it common ground. A safe, familiar interest that motivates the child, engages the child and makes the child feel calm and content. Happy, calm child= happy calm parent.

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3. Be understanding.

There are going to be plenty of times when a spectrum parent cancels plans, runs late and leaves early. There might be times where the parent goes off the grid for a while. You can support this parent by being understanding. Please keep inviting the parent, child, family to events. Regardless of how many times spectrum parents may cancel or decline- still being asked and included makes such a difference.

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Understand that sensory overload is a nightmare for some kids on the autism spectrum. Noise, smells, light, people.. all of this can be exhausting and actually painful. You can help with this, by planning visits and catch up with consideration.

When picking a venue (such as a cafe) check with the parent where is a suitable auti- friendly place.  Be selective of parks, times of play and time spent catching up. Short and sweet is often best!

4. Celebrate with the parent

The small things really are the big things. Whether it’s talking for the first time, making it to the shops without a meltdown, learning to use the toilet or even touching a new food. These things can be epic!  

5. Be a listening ear.

All parents have rough days. Some days, rougher than others, If you can make time for a phone call, a message and lend an ear- you will help combat the loneliness and isolation that so many Autism families feel. 

If all else fails, give hugs and a listening ear, (wine and chocolate optional).

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