Nobody wants a diagnosis of any type, do they? No one wants to be suffering or different from the person next to them. But without asking for it we were forced to except our fate and it’s not until we got there we realized there’s a whole world of the same type of people going through the exact same thing, just different levels of it.
It’s actually better being there than being on the borderline wondering where you belong as you can start to accept things and move forward once you stop worrying about what others think.
I remember typing a letter to over fifty close friends on Facebook after Mia was diagnosed and I wasn’t once ashamed of what people might’ve thought as I told them about Mia. I thanked them for supporting us because out of the one hundred odd people that knew, only a small handful asked offensive questions out of fear and lack of knowledge, but the rest of our friends and family offered sincere words of love and support. It was like a blanket of colorful well wishes washed over me and their words of encouragement about who I was as a mother and friend gave me so much strength and pride and helped keep me marching on. I was advised to just call it a learning delay and that Mia would catch up by age five or six but I knew the splinter behaviors were enough for now to claim this diagnosis. Given her extremely independent and highly sociable skills it was very contradictory to the typical list of ASD symptoms. But there were three major issues here, which were undeniable sleep sensory, advanced intellect and Mia always being unwell. We also had the added faith that once her tonsils and adenoids were removed and grommets put in she would thrive. But it was only 2013 and she was just beginning her therapy and too young for such an operation, or at least we hadn’t been advised to do so … yet. However, it was an invitation to sanity land awaiting us and a chance for our family’s storms to calm right down long enough for sun to shine continually and warm our hearts and bring peace to our loving family. Mia deserves health. Max deserves health. We all deserve true wellbeing.
What others think should never sway you in life. I know it does. It always does especially more so by those we love. It’s often our dearly loved parents whose opinions of us mean the most. I haven’t mentioned my own parents a lot as that’s enough for a second book, but I will say that I know they love me very much and I know they are proud of me and I also know I have far exceeded their expectations as far as motherhood goes and I know they are in awe of my strength and compassion for my family. But their opinions of me have been the most important often without me realizing until later, but every single word they say to me (yes even though I’m thirty-six) goes into my soul and embeds itself into the core of my being. It has held such weight and often put me under too much pressure to be more. More than I already am. And what I mean by that is their judgement of me has caused me so much anxiety. I felt like I was failing because Mia wasn’t what she ought to have been. Mia wasn’t what we all expect a baby to be. Mia wasn’t calm and abiding. Mia wasn’t well-behaved. Mia wasn’t a good sleeper. But she was mine and I had to do what I felt was right for me and that was to stick to my inner voice telling me something was wrong and that it wasn’t just naughtiness, which was hard.
I didn’t want to look fat and unhealthy in my parents’ eyes. I didn’t want to fall behind and lose my coping skills. I didn’t want to be sick and go to hospital and have to ask them for help. I didn’t want to have to explain to them about autism. I didn’t want to explain my struggles. I didn’t want to say I needed them because truth be told they needed me too. I was a pillar of strength for them too as I was the one they needed for advice and I felt like I let them down. So Mia’s diagnosis and my diagnosis brought me to a place of freedom and great healing as it stopped me parenting my parents and it stopped me worrying about mainstream old-fashioned parenting beliefs that are embedded in our parents from the generations before them. I stopped holding everyone up and started holding myself up and my children. I had to let go of trying to please everyone by putting myself under enormous strain in public with them. I could feel the stress and anxiety build when arriving with Mia at any family event, hoping that she would be the perfect calm child and I would handle it calmly. I learnt that part of being on the spectrum was not coping with change and public outings being extremely overwhelming, which was the case for Mia, and that a meltdown was totally different from a tantrum. It is a very hard experience to get through as when a meltdown takes place you only wish to god no one ever sees it, especially family. I learnt so much through Mia’s diagnosis about the body and the mind and sensory defensiveness that I was becoming more compassionate towards Mia and her daily struggles. My parents are very proud of me for sticking to my beliefs and I know they love us very much.
So no, we don’t want to be diagnosed in any way and we don’t want to be judged and all we crave at any age is compassion. We want to be equal and understood. We want health and peace and people and family in our lives that shine understanding our way and hold us up when we fall. It’s not always possible but it’s what we all want, otherwise we wouldn’t fight for it so much.
About the Contributor