Autism RibbonMy Darling Maya:

I wanted to write you about our precious journey, albeit short, as Amah and granddaughter.

Your Poppa and I were so blessed to be with your parents and your maternal grandmother when you were born on August 27th, seven years ago. We felt such joy at holding you, minutes after your birth, and being with you in those early weeks of your arrival.

It was at another visit, a couple of years later, that my heart started to hurt.

You would not give us eye contact, nor let us touch or hold you. You spent hours drawing little circles and building tiny piles of rocks in the courtyard. And so I, as gently as I could, suggested to your mom and dad that maybe something was going on with you, outside of the typical toddler scope.

Your parents were wonderful, immediately following up with an assessment. A few months later they called me, minutes after receiving the diagnosis: Autism Spectrum Disorder.

Flash forward to 2012, when your mother and dad decided to move to Toronto. You, your little sister and parents would be living with us until they could get resettled here in Canada. Now Maya, since I had already raised three sons, I figured I knew little children. But, you and I did not connect to my expectations.

I did not understand your behaviors and did not know how to love you the way you needed me to love and understand you.

But I learned.

I learned from your mom and dad who, with their delicious sense of humour and commitment, absorbed as much as knowledge and insight possible about Autism. More to the point, about how autism affected YOU.

I learned from your little sister, who immediately knew how to love and defend you at a very early age.

I read and observed and kept trying to connect. Maya, in a fairly short time you started to blossom at a school for kids with autism, who understood your needs and how to help you succeed.

So here we are, two years later …and you give us big, wonderful kisses and hugs. You come out with the most profound statements, such as the time I walked out of the bathroom, nude after a shower, and you said ‘Hi Amah! Where are your glasses?”

Or the time you came to visit and, after explaining the points system of behaviour at school, and expressing your disappointment when you did not achieve to your expectations, said “Do you mind giving me some privacy? I need to play.”

You cut to the chase and we know where we stand with each other.

Maya, you have such a rich imagination and create complete worlds in your imagination, dancing and playing with a whole cast of imaginative friends in your mind’s eye. You turn on it’s head, the myth that autistic children are only ‘black and white’ in their view of the world and do not have much of an imagination. You are a whiz on the computer and love your iPad –I think technology acts as a bridge enabling your (now) very articulate communication. You are reading at the appropriate level and your teachers comment on how bright and adorable you are.

Maya my darling, each of us is unique and each of us a little different from each other. I so look forward to seeing you as an adult and contributing your wonderful gifts to society just like the amazing Stephen Spielberg, a famous and beloved movie director. He was diagnosed in his 40’s as having Asperger’s Syndrome; the same kind of wonderful mind-wiring as you.

Much Love,
Your adoring Amah (Rhonda)

Autism Awareness Day 2015

This April 2nd marks the seventh annual World Autism Awareness Day (WAAD). Originally created by the United Nations General Assembly, the day has become an opportunity to share information and raise awareness about autism, while also highlighting some of the accomplishments and challenges faced by those living with the condition, both children and adults. Events are held all over the world every year such as panel discussions with autism experts, politicians and non-governmental organizations, fundraising, conferences as well as workshops.

Autism was first diagnosed by a psychologist from John Hopkins University by the name of Leo Kanner in 1942. “Decades after that first discovery, its causes are still far from understood. Today research from around the world focuses on a multiple of possible causes such as genetics/heredity, differences in biological brain function (neuropathology), pre-natal factors, possible exposure to environmental toxins, viral infections and immune system deficiencies”.(1) Autism is considered to be a lifelong, neurological developmental disorder, characterized by difficulties in communication and social interactions, as well as repetitive behaviours and sensory sensitivities. In the past two decades autism rates have been on the rise, as the latest research conducted by the Centre for Disease Control estimates; 1 in every 68 children are born with or have been identified as having autism spectrum disorder or ASD. This is up from an estimate of “3 cases in every 10,000 children from studies conducted in the U.S. before 1990”.(2) Some argue that this increase could be due to better diagnoses, while others argue that there are other factors involved.

Autism awareness is extremely important for both children as well as adults living with the condition. For children there is a great need for more research and funding for effective evidence-based treatments, better access to that treatment, earlier diagnoses, as well as “essential supports” for the families of those children. For adults living with autism, there are another set of challenges to overcome. According to the United Nations “it is estimated that 80 percent of autistic adults are currently unemployed, due to a lack of support when it comes to job training as well as pervasive discrimination”. (2)With respect to finding employment, “research suggests that employers may in fact be missing out on abilities that people on the autism spectrum have in greater abundance than the “neurotypical” worker. For example people with ASD often have heightened abilities in pattern recognition and logical reasoning, as well as a greater attention to detail. This makes them the ideal candidates for jobs like software testing, data entry, or lab work just to name a few”. (3) This shows the importance of removing the stigma attached to ASD, so that we are able to uncover otherwise overlooked abilities, that once fostered, would enable these individuals to lead more complete and fulfilling lives. We can do this by “creating better access to vocational training, better support with regards to job placement and lastly with greater awareness we can begin to eliminate the discrimination that stands in the way of employment opportunities”. (4)

Many times “autism is portrayed as a frightening disease in need of a cure”. Limiting ourselves to this perspective can result in a lack of resources when it comes to creating programs that are actually able to improve the everyday lives of autistic peoples.” In addition to this there is a “strong need for members of the ASD community to hold more “senior leadership positions within autistic organizations, in order to truly voice the community’s needs in order to bring about more change”. (5)

As John Elder Robinson, an author and a person living with Autism so eloquently explains:

“I have come to the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way. Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment. Consequently, I support the idea of changing society to make it more accommodating for people who are different.”(6)

This holds a very compelling message for us all. As a society, we must do more than merely accommodate those who are different, we must celebrate those differences and realize that in those differences lies great power, great potential, and great opportunity, for a more inclusive world where we are able to see beyond the weakness and instead find the strength.

References:
  • 1. http://www.autismsocietycanada.ca/asd-research/general
  • 2.http://www.webmd.com/mental-health/news/20021231/cdc-autism-rates-higher-than-thought
  • 3. http://www.un.org/en/events/autismday/
  • 4. http://www.un.org/en/events/autismday/
  • 5. http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks
  • 6. http://jerobison.blogspot.ca/2013/11/i-resign-my-roles-at-autism-speaks.html?m=

about the author - Rhonda

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