My son Jeorge was 4 years old when he was diagnosed. We already knew he was autistic, as I had been an early years professional for 15 years. To begin with, even with some knowledge, I was scared. What would this mean for Jeorge? Would he ever speak? Would he ever stop head banging and crying, screaming and being afraid to go outside? We felt like we were drowning and out of our depth. I read so many books and researched so much. I worried about dying, something I never worried about previously. Who would look after my darling, precious son? Who would understand his needs, and who would honor him like we tried our best to do?
Eventually, I took the advice to stop reading books and start listening and feeling what we needed as a family. Through the years, we have met many families and people on the autistic spectrum. I learned each of us has our own unique way of being. I believe there is no right or wrong way to live or to support, and no right or wrong therapy or strategy to try.
I stopped trying to please outsiders and their opinions of what we should be doing with Jeorge. Many opinions came to us from all angles, some of which showed a lack of knowledge and true understanding of Jeorge’s needs and reasons for his extreme behaviors, and some of which helped.
Jeorge is almost 11 years old now. He is still nonverbal, and we have offered him various communication tools. He uses them all in some way: PECS, a communication aid, sign language and body language, and a multitude of sounds we now have decoded. I have learned over the years to understand what Jeorge is telling me. I am still learning, and there are things I don’t always understand, but I am getting better.
We learned over the years to fully embrace Jeorge’s quirks and his love of nature, which is easy because we live in rural Wales. We spend as much time as possible in streams, rivers, forests and swimming pools. We also stopped buying him “traditional” toys and instead bought sound and light-up toys he adored. We allow him to spin his toys if he wishes. He eventually stopped head banging as he became more relaxed because his sensory needs were being honored. If he needs to stim, flap, jump, or spin we do not ask him to stop. We have learned he needs to do this for a multitude of reasons.
I am constantly learning about myself. Jeorge is teaching me skills such as patience and letting go of any fears of the future, because Jeorge has taught me to live in the moment. He has shown me how strong I am, how big my heart is, and to see the joy and the beauty in everything.
I believe Jeorge was born the way he was meant to be. We do not see autism as a “disease” or something to be “cured.” The more we watch and listen, the more I think he sees and feels so much more than I am aware of. Alex Lowery and many others are educating us with their own experiences and want to share their perspectives. Thank goodness, for even with the most heartfelt intentions, sometimes non-autistic carers, parents and professionals get it wrong. This is the time for autistic people to be heard. Those who are willing and able to share real insight to autism can build the bridge between two different ways of thinking and being. I do my absolute best every day, even if sometimes things do not work out the way I had hoped. I am sharing our world in the hope that it can offer some guidance to other parents who are on the beginning of their autism journey, a community that can grow and educate.
One day, our compassion and understanding toward people on the autism spectrum will be so much more than it is now.
A version of this post originally appeared on Dazlious.
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