My youngest little boy is 4, and one of the funniest kids you’ll ever meet. But only if he lets you into his world. You see, Arlo is autistic. I’d like to tell you Arlo’s story; about his autism, his surprise autism diagnosis, and why it came as such a shock to us.
We always knew Arlo was different. As a baby he was very calm and happy. He only cried when he was hungry. I mean, he didn’t sleep well (I’m talking 30 minute wake-ups through the night; we joked he was like Stewie from Family Guy and was trying to kill me). He didn’t like people unless he knew them. He wouldn’t look or even acknowledge their presence, but again this isn’t unusual for babies. When he got to around 18 months, he started to change. He was frustrated a lot and had a killer temper. I had to stop taking him to mother and baby groups. It was too much for him. We put it down to him having a speech delay from chronic ear infections affecting his hearing (and moving across to world from England to California!) and he began speech therapy.
I spoke to MANY healthcare professionals, but they all assured me Arlo was ‘within the range of normal’ and ‘just strong willed.’ Some alluded to it was down to my parenting, so I did a parenting course. I took him to see so many doctors and therapists who all dismissed my mummy instinct that my beautiful boy was different.
One day though, someone agreed with me. His preschool teacher, who remains a great friend of mine, mentioned that maybe I should take him to see someone. That his aggression, his rigidity, his difficulty separating from me, his inability to sit still or rest even for a short period of time, might be an indicator that he needed a little more help. I took him to our pediatrician who again told me he was fine but referred us to a therapist. This is where I made a big mistake. I took Arlo out of the small in-home preschool and moved him to a much bigger school. Things went downhill fast from there. The school couldn’t control Arlo. My poor sweet boy was coming home crying, unable to regulate his behaviour, hurting other kids, craving routine yet unable to follow it. I decided to home-preschool my baby but also vowed to seek help directly from a neurologist.
Here is where the surprise diagnosis comes in. You see, although I knew Arlo was different to his peers, he lacked so many of the things I thought of when I thought ‘autism.’ Arlo doesn’t flap his hands or focus on his fingers. He appears to make eye contact (although I’ve since realised he doesn’t actually do it a lot), he is articulate and an expert at mimicking play.
So there I am, sitting in the office of a neurologist while my son runs laps around her desk and she begins asking me questions:
Does he line things up? Well yes he does, but only his favourite toys.
Does he fixate on anything? Well yes, he knows the names of all his dinosaurs and has an impressive collection of random animals like tapirs and ibex.
Does he have friends his own age? Well yes, one little girl but he much prefers the company of adults and older children.
Does he engage in imaginative play? Well kind of. He role-plays situations from movies and tv shows.
She points out to me that he doesn’t actually make eye contact. He appears to, but he isn’t doing it and when made to he shows visible stress.
And then, in the doctor’s office, before she had made her diagnosis, I realized. My boy is autistic. Part of a very special group of people who see the world differently. We were relieved once we got over the shock. I didn’t cry. My husband reminded me that this doesn’t change Arlo, it just opens up doors for us to be able to help him more effectively. He is still one of the most amazing children I have ever met.
Life So Far After Diagnosis
3 months after Arlo’s diagnosis and we are still learning so much about autism and how it presents in Arlo. He has started at an amazing special-needs preschool where he feels loved and safe. We now see a wonderful occupational therapist who has worked wonders for his confidence and his strength. He goes to a karate school for children who need a little extra help. They have helpers so the children can all access the class effectively.
The diagnosis may have blindsided us, but our boy continues to amaze us with his outlook on the world. He makes us laugh even when he doesn’t mean to. We are learning so much from him. Even when he’s driving us crazy! I won’t lie and say this hasn’t put pressure on us as a family. Anyone who knows a family touched by autism knows it’s hard. Life has to be different. Changes have to be made. Some days I crumble. Other days I spend hours trying to organise therapy schedules and researching new therapies. Some days I do nothing but drive two boys around to various classes and therapies! But we are trying hard to live our best life for our boys, and isn’t that what parenting is all about?