THE CHRISTMAS CONVERSATION AUTISM PARENTS WANT TO HAVE

Christmas is full of cheer and gatherings. But it can also be a difficult time.

We desperately want to come together and have quality connections with each other founded in love and companionship. Last year Aussies spent more than 25 billion dollars on Christmas– that’s a whole lot of trying to connect right? You don’t go into a spending frenzy based on the celebration of the birth of a Messiah. You whip out your wallet or become enthralled with family time because society tells us we need to and we get caught up in either the joy or the fear of the connection. Some beautiful souls become so depleted because they don’t have a family, or a home this Christmas, the thing is- it just isn’t easy for everyone. But it can be better.

If you are visiting your family or friends home, the anxiety may have even started. How are we going to cope?

Will we even go? So as Grandparents and family members and friends- how can we make Christmas gatherings more enjoyable, supportive and inclusive so that everyone feels the love on some level?

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If your family celebrates Christmas all kinds of wonderful is about to unwrap. All this food to prepare, maybe you have people coming to visit and gifts to wrap, the house to clean- EEEEEK! Now one of the complicated things that can happen is when you have a child on the spectrum, and you would like to enjoy these festivities too but it’s not a time of year of calm and quiet is it?

Often Autism presents behaviors that have traditionally been viewed as bratty or antisocial, however, once you really observe and watch you will start to understand and recognize that they are behaviors that the body’s coping outlet and a way to regulate or try and get away from what is going on. It is entirely unintentional, the behavior is communication.

Flapping -agitated or excited

Rocking

Hitting

Making noise

Shutting down and not responding to a conversation

Stimming-

Spinning-

Becoming physical by crashing into things or hitting and throwing objects.

Spitting

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All of these behaviors are indicators of what is going on beneath the surface.

Under the surface there is some kind of central nervous system disruption- now this could be positive as in excitement and joy or it could be the signs of a meltdown or needing to self-regulate. Why? Because the sensory input is HIGH! But here’s the one thing it is n’t: naughtiness.

So as a Grandparent, Aunty, Uncle or family friend what can you do when you have a Spectrum child visiting? Here are just a few…

1) Find out what the child’s passion is, what do they like?

Is it fans? Perhaps at your Christmas gathering, you can have a fan there for the child to look at, focus on or start a conversation about. If its a train, can you get a small train set or something related to trains? Asking the parent to bring something is excellent, but let me tell you if you act, and the child turns up and sees that you too like trains or fans it is going to change the whole energy of the interactions you have.

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2) Create a quiet space away from the noise just for them.

Let the parents know that you have created a space for their child if they need to escape the sensory input. Ask them if this is suitable and can you do anything else to help make their little one more comfortable. This will be worth more than gold.

 

3) Lower your expectation!

There will very well be some behavior spill over so when this happens do not make judgments or try and reprimand the child. This is disastrous and can cause further upset, misunderstanding, and it communicates a powerful message to your loved one that you don’t understand Autism in any way. Now, this could be true, but at the end of the day, you want to have time together that is meaningful and real. And on Planet Spectrum won’t be anything but this. Trying to pretend is going to go as far as flying a kite with a concrete brick. However, there will be moments of insight and joy that will change your life. Our Spectrum children are excellent teachers.

4) When a meltdown happens-

 

First act is to make sure the child is safe, so it is just you and the child and they go to jump a fence or run out on the road or grab a kettle, then clearly the first thing you do is stop this where it can lead to a physically harmful situation.  But if the parents are there, do NOT make eye contact with the child, do not try and touch that child in any way shape or form. Simply ask Mum or Dad if there is anything you can do to help and keep calm.

 

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trees on hillside of mountain range with coniferous forest and flowers on meadow. composite image day and night with full moon

5) Reduce your expectation on the parents!  

Let them know you want them to stay as long as they feel comfortable but its okay for them to do whatever they need to do today. Quality not quantity is critical here. Even if your beloveds only get to stay for 30 minutes and in that 30 minutes this Spectrum child melts down like world war 3, if you have shown the parents you care by doing these things, you have given them the best Christmas gift you could possibly give- support.

Parents if you would like to buy everyone a copy of Planet Spectrum for under the tree Click Here. 

If you would like to use our Flight Manual App and download a copy to give to your family before Christmas- Click Here. 

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.

Kids Happiness Fun Smiling Children Concept

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.

If you would like to know more about how to navigate Planet Spectrum and gain insight and tools please click here.