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Our Golden Hat will go on – #APD2017

It’s Autistic Pride this Sunday – 18th June 2017. In honour of the day I will be writing about different foundations from all over the world and how you can help.

“After watching A Mother’s Courage: Talking Back to Autism with my daughter, she turned to me and asked, “What if I wasn’t able to tell you I love you, mummy?”” – Kate Winslet (aka Titanic aka A-list Hollywood actress aka autism advocate).

Co-Founders Kate Winslet and Margret D. Ericsdottir met when Kate recorded the English narration for Margret’s documentary, A Mother’s Courage: Talking Back to Autism, which captured her journey to find a way for her nonverbal autistic son, Keli, to communicate. Throughout her journey she visits scientists and families all seeking  a way to get to know the person behind autism better. To get to know her son.

The Golden Hat Foundation is a non-profit organization dedicated to changing the way people on the autism spectrum are viewed by society. They focus on abilities and potential, education and career training. Long-term goals include the establishment of innovative post-high school campuses designed for people on the spectrum.

This is a great organisation to support and follow. Here is what you can do:

  • Learn more about the organisation
  • Subscribe to the monthly newsletter
  • If you are in Texas, attend one of the Meetup Groups and share your experience
  • Volunteer
  • Donate
  • Visit their blog

In July 2015 I wrote an article for Autism Daily Newscast: 5 things my brother’s Autism stole from me and the Golden Hat Foundation shared and retweeted Christos’ story.

The Golden Hat11752398_10153455833490030_5815753847288641852_n
This boy had a golden hat.

The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.

I think the great thing about The Golden Hat Foundation is that it is a partnership between two mothers, whose experiences with motherhood are exceptionally different. Yet, they come together because they are both mothers. Just like we need to come together, despite our lifestyle differences, because we are human.

Happy Autistic Pride Week!

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The [A] Word: [U]nanswered

What causes Autism? We don’t know but there are theories; genes, nature & nurture, too many ‘connections’ overloading the brain.

What is the cure? We don’t know but there are educational and habilitative treatments.

Is it genetic? Which genes? We don’t know but genes are being researched and discovered almost daily that are associated with Autism; this will allow for more in-depth analysis, prenatal testing and a better understanding of how the autistic brain develops and differs from the typical one.

Autism has increased significantly in the past decades, the question is: why? We don’t know but there are theories. For example, something in the environment that triggers autism in a susceptible child. But what? We have the immunizations and thimerosal theories, but evidence and research is strongly against these being the cause. An infection of some sort? Some sort of environment pollutant? Something in the diet? Allergies? We don’t know.

Is autism really on the rise? We don’t know but some believe that can now assess it with more accuracy and proportionately to the increased awareness of autism and the means to diagnose it more readily and at a younger age. Additionally, high-functioning Autism wasn’t diagnosed until recently, which has added to the numbers. However, we don’t have substantive evidence of this theory – we don’t know.

17ea9f8964df5913aadceadbfcc6a23aWhat is the best educational program for an autistic child? We don’t know but because it is a spectrum disorder some can find solace in the fact that an autistic child might receive ABA therapy or cognitive therapy or speech therapy or a combination of two or more alternative therapies depending on what works best for his/her own individual needs. The wide range of alternative therapies discussed in Be creative – Alternative therapy and Projects for Autism – Swimming are more than worth trying.

How young do we need to start? How intense does it have to be? These questions have an even more frustrating answer than “We don’t know”, it becomes “It depends”; it depends on how old they are, it depends on their sensory sensitivity, it depends on their social abilities, it depends on their attention span, it depends on how much and how long you will dedicate to searching for what will work.

Where does being a “quirky child” end and the “autism spectrum” begin? This is my favourite question, it encompasses how little we actually know about Autism, how easily it can be shooed away. The answer is WE DON’T KNOW; and then comes the dilemma, which is dealt with in such a subjective way it is both infuriating and heart-breaking. If a child has some traits but not enough to seem fully autistic, is it better for them to carry the “Autism” label or is it preferable to be called a “weird kid” whose individuality is not defined by any label?; the other side of the coin is that without an Autism diagnosis the child will be deprived of the degree of special education services and the access to treatments available to cater (maybe) to his needs.

 

Autism is a puzzle so read, research, educate, make people aware until all the pieces fit; it’s all we have.

 

*For answers to different questions, tips and guidance look at 15 answers about Autism.