Conall’s pushed one of the twins in the river.
This was the sentence that began our journey into the world of autism. He was four, had just started school and had always been a handful and a bit prone to tantrums and aggression. To give a complete history, he was born full term, not a pleasant birth, vacuum, episiotomy, the complete spa treatment. He scored 10/10 on his Apgar score but cried nonstop in the hospital. He took two weeks to latch on to feed, they even had breast feeding experts visit my bedside in the hospital and pincer grip my nipples. He was my first child and I assumed I was spoiling him. I was told I held him too much… how does anyone have the emotional strength to separate themselves from their beautiful, sweet-smelling (most of the time) baby? My Mam blamed breast feeding. She didn’t come out and say it but she was deeply suspicious of the whole business and if someone’s child acted up she’d often ask “was he breastfed?” and if the answer was yes, she’d look knowingly at me. Conall was slow to talk, over 3 and his first word was light, followed by “there you are”. When he found his feet, he had a tendency to wander which brings us back to that river. I had just returned from a scan on my 3rd baby and Conall had been really well behaved in the hospital with me so I allowed him out with his friends, the twins from next door. He had persuaded them to walk up to the river which is a about ten houses away from our house. He told one of them to throw some rubbish in the river and when he refused Conall said he’d push him in if he didn’t. He refused again and my son pushed him in. Thankfully the water was low that day but the boy had a gash on his head where he hit a rock. I was shocked to my core, I knew he could be stubborn and aggressive and was prone to major meltdowns but to act maliciously (and litter!) was unconscionable to me. I called next door to apologise but the house was in uproar and I left. I sobbed for hours and I met with his teacher the next day. She probably thought I was a hormonal mess but agreed that something wasn’t right. My neighbour called and we both had a cry. She was amazingly kind and sympathetic and as a mother of 5 confirmed what the teacher had said.
I made an appointment with our GP and listed all my concerns. I had always harboured a feeling that he had ADHD but the doctor was the first to suggest Asperger’s and refer us on. Strangely the first person I thought of with Asperger’s was a contestant on America’s Next Top Model years previously who seemed robotic and spoke in a monotone. When I got home I googled the bejaysus out of that word and had so many lightbulb moments. I decided to go see a child psychiatrist privately to get an official diagnosis. We met with the doctor quickly enough and it was a nerve-racking experience. He was a middle aged man who immediately put me on edge. I felt as if I had Munchausen by proxy and was just exaggerating “typical boy behaviour”. Conall of course behaved impeccably in his office causing the doctor’s well-coiffed eyebrows to ascend a little further. He suggested Conall was a little young for a diagnosis and to come back in six months. He did however comment on Conall’s lack of eye contact which oddly I hadn’t noticed prior to it being pointed out. We felt really deflated (emotionally and financially) and endured another six months of erratic behaviour. When we returned the doctor suggested my husband take our son out for a walk so we could talk privately. Conall didn’t want to go so I suggested my husband take him to the shop for “something nice.” When they left, pompous pants said you shouldn’t have to bribe your child. I was immediately on the back foot and felt like a shite mother. He started to ask if I spent time with my son. I said as much as possible considering at this time I had two other boys under two. He asked “but are you on your phone when you’re with him or are you with-with him?” Of course I lied and said with-with him, definitely not on facebook or checking the clearance in Argos. He asked was my husband a “hands-on Dad”? He suggested a parenting class. By this stage I was blinking back tears and a complete wreck. Before a diagnosis he wanted me to see a psychologist and do a parenting class and possibly remortgage my home. I left there reeling, I felt like I’d spent time with an emotional vampire. My husband was furious, but like the polite Irish/Turkish citizens that we are, we gave over another briefcase of cash. I bawled all the way home in the car, torn between rage and despair.
After that I got proactive!
“Anyone else out there who has a child with Asperger’s that would be interested in meeting for a chat?” This was the plea I posted on a local Facebook page. Slowly responses pinged in my private messages over the next few days… It was great to meet with mothers who were beginning on their spectrum journey or were further down the road; individuals to chat with and learn from.. In the meantime the public services were dragging their feet and Conall still didn’t have a diagnosis. A professor and an expert in this field was recommended to me and I rang up and got an appointment pretty quickly. I didn’t know what to expect and was apprehensive after my last shrink appointment. I was put at ease straight away as there wasn’t an imposing oak desk between us and he seemed genial in a gentle college professor way. He fired a tonne of questions at me as Conall sat drawing. They required only simple yes or no answers. I answered yes to every question except “Does he spin?” At which point Conall looked up and quite calmly said “no I don’t” (he does).
The diagnosis was no surprise… Asperger’s, ADHD and Oppositional Defiance Disorder. The professor removed his academic hat for a few minutes to explain how some of the world’s most successful people have Asperger’s and gave the example of De Valera. I was relieved to have an official diagnosis (as was my wallet €300 lighter) It’s amazing how many people ask “are you sure you want to label your child?” My response is, “it isn’t a label, it’s a diagnosis“. I was relieved to have a label; On a selfish note it meant I wasn’t a crappy mother who couldn’t discipline her own child and my son was not a brat but a kid full of anger and anxiety due to the fact that his brain wasn’t functioning in the same manner as a neurotypical child. I’m awash with guilt as I type this and memories of my frustration and anger at an aggressive and defiant toddler surface. It’s tough when it’s your first child and you haven’t a clue what you’re doing anyway but like anything it’s a case of taking each day as it comes and trying to do the best for your child. It’s too long and boring to go into the short-comings of the public services. You need only to be a member of one of the many autism support groups on Facebook to understand that this is the norm. It would be nice for someone to sit us both down and ask what we’d like or need? I was so excited to get into the system as I thought so much would be done but I’m beyond relying on the public health system now. For Conall, psychology is having an open dialogue with me. I ask him every day what his high and his low was and try to glean his mindset from his answers. For someone with not much emotional regulation, he can certainly keep his inner feelings in a vault but “chats” at night can sometimes let me gain some insight. I worry about him when he hits puberty but I will always be open about his diagnosis as I feel it is something he will need to embrace as early as possible and indeed celebrate. Occupational therapy is done through wearing tight vests, lots of hugs, swimming lessons, hip hop dancing and just running around the house like a mad fecker, occasionally dropping to the floor for a few press-ups. Speech and language is dealt with by fostering friendships, school, and extracurricular activities. There should be no stigma attached to Asperger’s or for any kid on the spectrum. Before I had Conall, I would judge tantruming kids and their parents with no thought for any underlying issue bar the need of a good wallop. My hope for this post and the next is to make you think next time you see a harangued parent struggle in Tesco. Also talk to your kids about inclusion in school and at play, there is heartbreak in watching your kid stand alone talking to himself in the school yard. Put on a bit of John Lennon’s Imagine there while you ponder these things, it was playing instrumentally in my mind as I typed the last paragraph, makes it more powerful.
In my next post I will explain in more detail our personal journey with the idiosyncrasies of Asperger’s. I’ll talk briefly about the negatives but more importantly, I’d like to highlight all the positives, and there are many that a child with Asperger’s brings.
It is a good few months since I wrote this and I had something to add. I recently told a friend on a night out that I thought her grown son had Aspergers. I struggled with this disclosure for a long time but she seemed relieved and said she’s look into it. Since then he came to me to thank me for telling his Mam as he now attends a support group and having a name for his perceived differences has helped him greatly. I have watched him, flourish and if I do nothing else good with my life I’m happy! It proves the point that a diagnosis is key and he in turn has promised to give me insight into teenage and adult years with Aspergers. You know who you are and I wish you nothing but happiness.