I don’t know if it’s because he was my first, or because I’m the kind of person who checks the doors four times before going to bed then wakes up my husband to ask ‘Have you checked the doors?’ but I wasn’t entirely relaxed around my son. He is fire, and power and passion. He smiles with his entire body. I am in awe of this boy who runs down hills with his arms outstretched and screams ‘TOO FAST!’ in between the laughing. But, there was tension hovering between us.
He was the Baby Who Did Not Sleep. He was the Toddler Who Did Not Stop Moving. He was the Boy Who Was Loud. He was the Boy Other Parents Talked About.
He was unpredictable. He loathed the things we’d thought he’d love. He didn’t talk. He didn’t stop talking. He didn’t want to be held. He only wanted to be held. We begged ‘How do you feel? What do you want? What’s going on?’ but he only twisted in on himself, or gave us the answer he thought we wanted. ‘I’m HAPPY!’ he’d scream, fists curled and body shaking. We provided our own explanations for this boy we could not understand by pulling things from various incidents (he was tired/he was hungry/he’s sensitive/he’s spirited/he’s anxious/I didn’t really like that person either/that pasta was shit). We knew we weren’t really seeing him though, he was right there and we just weren’t getting it. Whilst I loved him more than I could ever imagine loving anyone ever, unease was strumming through our relationship. Then one day I googled Autism Spectrum Disorder and the penny dropped. Boom.
In some ways his diagnosis was nothing to do with him. He continued being himself, just as he’d always done. It was my husband and I who really benefitted. Finally we could see him. We weren’t so much handed a letter of diagnosis as a letter of ‘Hey guys chill the hell out, this is your kid and he’s fine, he’s just autistic.’ We stopped freaking out about dinner not looking like eating hot food at the table all together and accepted that dinner looked like rolling around the floor eating frozen peas. I stopped trying to have endless conversations about his feelings and started looking at what his actual communication was. He was still fire, and power and passion, but I was no longer tense. I got him. I finally understood my child.
We told people. Some people were surprised and others were highly unsurprised. The day we got the official diagnosis we made him a cake to celebrate his different brain. It was not all cake though, the more I researched and the more people I told the more I was informed I had no right to celebrate my autistic kid.
We were told to expect a neurotypical child and that anything less was a loss. We were told that disability was scary, and that having a disabled child was worth grieving over. We were told his future was uncertain, that autistic people struggled with finding relationships and jobs. We were told he would be shunned, or bullied, and that we should be grateful if people remained our friends in spite of our child. We were told most people would leave. We were told we would be lonely, our family damaged. We were told he would never fit in and needed to be rescued. We were told we were bad parents. We were told he didn’t look autistic and all he really needed was discipline. We were asked ‘Do you really want to tell people? Do you really want to label him, with all of THAT?’ That being all the ways society would see him, all the deficits my beautiful four year old apparently had.
Yes, we said. We do. Sign me up bitches.
All of that crap is exactly why we labelled him. Because it’s time for all of that crap to be gone, and that can only happen when we know exactly how wrong it is. Everyone else needs to get the chill the hell out letter too – it’s not terrifying, it’s not awful, it’s just autism; and it looks like a bunch of different things because it’s a bunch of different people who are doing different things. Not one of those people is wrong, or inferior. We need people to see the proud parents of autistic kids, the happy autistic adults and the thriving autistic family – all of which exist in abundance.
Labels happen, I want to make sure my son gets the right one. I want him to get the label that empowers instead of the one which shames. I want him to know he’s autistic so others don’t tell him he’s broken. I want my kid to wield that label like a weapon. He knows he’s different; he shrugs when classmates watch him bear-walk into the room ‘Sometimes I just do stuff like that’ then they shrug too, and the world resumes spinning. The power of diagnosis is knowledge, he knows that part of the reason he is so valuable, and loved, and ridiculous is because he’s also autistic.
I have a favourite quote (yep, I’m totally that person) and I always thought I understood it perfectly. It has more meaning now.
“There is a vitality, a life force, an energy, a quickening that is translated through you into action, and because there is only one of you in all of time, this expression is unique. And if you block it, it will never exist through any other medium and it will be lost. The world will not have it.” -Martha Graham.
I don’t want my boy to think that what he brings to the world is not as valuable because of his neurology, I don’t want him to block it, because then it will be lost. Gone. I want him to keep his fire, his power and his passion; and I want him to have the right label while doing it.