On World Autism Awareness Day on April 2, my wife posted on Facebook, “Autism is a journey we never planned, but we sure do love our tour guide.”
Although she doesn’t claim to be the writer in the family, I thought her words were incredibly poignant.
Through a display of the color blue, whether it’s donning clothing or lighting up the Empire State Building in New York City, the concept through Autism Awareness Month is to recognize people living with Autism and those impacted by it. The goal is to increase understanding and acceptance through education.
The ironic part is the last thing most individuals with Autism have any interest in is being in the limelight. Nonetheless, it’s important for neuro-typical people to be aware and realize there are many different types of individuals in this world.
Prior to becoming a parent to a special needs child, I admit to knowing little about Autism. I hadn’t invested a lot of time in researching and reading about it because I had no connection to it in my life.
Soon after Carson was born in 2009, we knew something was different. When he was 3 years old, we learned through genetic testing he had a duplication of chromosome 7. It’s an abnormality with no cure that results in major developmental delays, anxiety disorders, social phobias, speech and language delays, ADHD, psychological impairments and cardiac and renal defects. A few years later, after we realized his therapies and care would not be covered by insurance, we were advised to have him tested for Autism. We received that diagnosis 30 minutes after walking into the doctor’s office.
It’s oftentimes easier to explain our child as autistic, rather than having a duplication of chromosome 7. It doesn’t matter to me. I could care less about labels. I just want what is best for him. If having a diagnosis of Autism will allow him access to more services, such as Applied Behavioral Analysis, which we have been utilizing for three years, then that’s fine.
All I know is our family is on an uncomfortable journey that makes our life a roller coaster ride. We have incredible highs and disturbing lows. We have tremendous anxiety caused by hourly distractions over doctor’s appointments, therapy sessions, insurance conference calls to ensure a service gets covered and distractions that only special needs parents realize.
We also know the impact it has on our family. I most worry about our older son, Beckett. His resentment toward his little brother is palpable. Carson gets attention Beckett does not because of behavior. I often think Beckett acts up or says something to ensure he’s getting the same attention albeit negative. He loves his brother. He will do anything for him. He vocalizes to us how exhausting it is for him to always have to acquiesce to Carson’s demands in fear of what sort of behavioral outburst will take place. There are times when he clearly states he wants a normal brother. He doesn’t want to be pushed down the steps or hit with something unexpectedly in an outburst, so he caves to his little brother’s irrational ways. It’s an unnatural thing.
Pam and I understand it. We know it’s difficult and want him to communicate when he feels his needs are being overwhelmed by his brother. When Beckett gets especially fired up or shows frustrations beyond the norm, we know we need to spend some time alone with him and get some respite.
The key to life I have found is patience. It can be difficult, but it’s critical to wade through the daily challenges. The reality is Carson looks at things differently. Accepting that and having an awareness of this reality is important because it’s the only way to ensure he lives his best life today and tomorrow.
There have been many incredible online posts and graphics about Autism this month. Many are worthy of sharing, but here’s one I found online that his home.
Neurodiversity is more than just a term – it’s both a fact and a movement.
It’s the concept that all “brain wiring” – or neurological difference – is, and should be recognized, respected and celebrated as part of what is considered a normal variation in humanity.
Labels such as dyslexia, dyspraxia, Autism, ADHD, Tourette Syndrome and mnay more neurodevelopmental differences would come under this banner, helping us understand their individuality and overlap, but removing the stigma of deficits and disorders and with it the notion that such things can or should be cured.
Embracing neurodiversity is a journey towards finding new language, new understanding and new acceptance for thousands of people in our region and millions more across the globe. It’s a movement that will nurture, celebrated and advocate for all forms of communication and expression, promoting any support that allows autistic people – and any others – to live life fulfilled, happy and on their own terms.”