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By Karen McAuley
Autism…it’s a word, it’s a condition, it’s a lifestyle and it’s hard sometimes. It can feel very much like a life sentence with unsurmountable obstacles and it can feel like you are alone and that no one understands. I get that, because sometimes it IS all those things and more.
People are going to stare, make comments that dumbfound you, give advice and tell you how they heard how to ‘cure’ autism from some article or TV show. I assure you there will be times when you want to scream at the top of your lungs and run far, faraway but really you have NO idea where you would go so you might sit there and have a good cry or scream into a pillow in frustration. It’s ok to do that…it’s ok to think about the ‘what ifs’—it’s a part of the human experience. But autism isn’t the end of anything, it’s merely going left when you thought your life was always going to go to the right.
I grew up not knowing why I was so different, why I struggled in school and with peers, why things came so easily for 95% of the people around me and I felt like I was climbing Everest with no idea how to climb. I never fit in with most people. I was that awkward kid standing around feeling really overwhelmed with life and not really sure how to approach the other kids. I was bullied. I was held back a grade. I spoke to the school counsellor a lot…but no one knew why I couldn’t focus or why I had such a hard time participating in things or even why I couldn’t seem to gel with others my own age.
I went through high school struggling. I did graduate a year late but I did it. I went on to college and university. I have four diplomas to my name and an undergraduate degree in Business Administration. I have 3 kids, two of them (my girls) are on the spectrum. I have been diagnosed with Aspergers, ADHD and Generalized Anxiety Disorder. I have had jobs and live on my own away from family and friends. I am a functioning member of society and I am on the spectrum.
It’s not going to be easy all the time, sometimes our traits come out in full swing and we struggle with that. But that is ok, because everyone struggles in life sometimes so never think that your struggles are going to be the only thing you will ever know. I have been able to push through a lot of tough stuff and you will too, as will our kids. Autism isn’t what defines us, nor are any of the things that come with autism. What really defines us is, well, us. Our words and our actions, how we treat others on the spectrum and those not on the spectrum…in other words the same things that define everyone. So you see autism isn’t really something horrible it’s just a different way of thinking, seeing and hearing things, much like everyone else in this world is different from each other. We are just that touch more different than the rest.
To connect with those on the spectrum just be willing to listen and learn. Be willing to accept them for who they are and not what you think they are or what you think autism is. I have learned so much from my diagnoses and they have enabled me to connect with my kids in a way a neurotypical mother cannot. I just know what they need and want without much more than one or two looks or words. I can tell you things about my kids that others would be baffled by and wonder how I could know that. It isn’t like I am telepathic or anything far out like that; I have seen so much of myself in my girls that I have been able to draw from our similarities and bond over our differences. Seeing the world from an autistic angle gives me perspective. It helps me understand the why’s and how’s that might pass you by without a second thought. It helps you learn patience. It helps you see little things that in the eyes of a child on the spectrum are so big and amazing.
Has it been hard for me? Heck, yes, but without any formal or informal therapy, I have accomplished everything soley on my own merits. I never fit in and I still don’t fit in with the “in” crowd but that is ok because those that I have met and learned to trust are better than anything else. People on the spectrum don’t need a lot of anything other than understanding and acceptance, the rest doesn’t mean as much to us as it does others.
Learn to communicate with your heart and your mind and not your words as much. Feel what is going on around you, listen with your eyes closed, take that deep breath in through your nose, smell the air…that is how you connect. Autism taught me that. Horns honking, tires on the road, birds chirping, trees rustling in the wind, the sun warm on your face, the air with the smell of fresh cut grass and the smell of the lawnmower still fresh, water on the plants…hearing and feeling the sounds and colors of the world… that is what Autism is…it’s a spectrum of light and color, a spectrum of amazing things and tough things.
Autism taught me that I am oversensitive and I struggle to let go of things but that is ok because that is who I am. I have learned to communicate better when I am facing sensory overload and not just yell and freak out at people. I have been able to help my girls with that too. I have been able to connect to others on the spectrum and feel a sense of relief that I have not had to explain myself over and over and to have someone that just gets it. I have also met those that are the opposite and have set out to undermine me and cause me grief BUT that is like anyone else is alive—there are always going to be those kind of people. You just have to work through it however long it takes.
So I guess what I am saying is autism is just a different thing that people deal with in life. It has its own unique set of challenges and obstacles to overcome and they take longer and more effort than our neurotypical counterparts but it makes the accomplishments so much more rewarding in my opinion. Nothing worth remembering and fighting for ever comes easy. The most important thing to remember is NEGU (Never Ever Give Up)…hope, faith, a worthy cause you are fighting for—yourself, your kids, love—so never give up that there are better days ahead when you struggling. Autism is NOT the end of the world – it’s just the beginning of a way more interesting life. So don’t let it be a bad thing and don’t give up. As REM put it
When you’re sure you’ve had enough
Of this life, well hang on
Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes
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With a network of affiliates across the United States, the Autism Society is the nation’s leading grassroots autism organization. Their mission is to increase public awareness about the day-to-day issues faced by people on the spectrum, advocate for appropriate services for individuals across the lifespan, and provide the latest information regarding treatment, education, research and advocacy. Contact and join a local affiliate and get involved! To find the affiliate nearest to you, click on your state below.