The Journey to My Son's Autism Diagnosis

I remember when my son was really little (he will soon be seven in July, which admittedly is still quite little!), and I didn’t know where to turn or what to do when I noticed some unusual things about him.  I am writing this so that others might have some sort of guide when in the same position, and also because, like birth stories, autism stories can be quite fascinating.

When he was little, my son met all of his milestones.  He seemed to be a very happy baby, he was a great sleeper, and he was totally chill.  At about 10 months old, he did spend a lot of time spinning metal bowls on the floor, and I do recall thinking along the lines of, “That’s interesting, that’s what autistic people do”.  But still I was clueless.

At around 16 months old, my husband discovered my son on his back, arms and legs splayed, eyes wide and frightened, unable to roll over.  From then on, he could not or would not roll over, and lying him on his back was near impossible.  When we did, he would go stiff as a board, with wild hysterical eyes and start to cry.  Changing his diaper was a problem, but we were able to do it if we put him on his change table, facing the same direction every single time.

When my son was two, my friend mentioned to me that I might get him assessed for sensory processing disorder.  My son hated mess, refused to touch things, needed everything to be cut up in bite sized pieces so he could use a fork, and refused at all costs to take his shoes off.  He still would not lie on his back, and couldn’t be spun around in any way. He was also very angry, but we thought that was just the terrible twos hitting hard.

When my son was three, I went to a nearby not-for-profit organization supporting children of all abilities, and a team of different therapists assessed him over three days.  They were not able to give him an official diagnosis, as they were not registered to do so.  However, they were the ones who told me it was autism.

But guess what?  I didn’t believe them.  My knowledge of autism was very limited, and I thought they had it wrong.  My son’s sensory issues were undeniable though, so on their advice I found a reputable OT who started doing occupational therapy with my son every week.  This OT’s previous job had been with Autism Australia, so she was very experienced working with autistic kids. After three months of therapy I gathered up my nerve and asked her if she thought my beautiful boy was autistic.  She nodded her head.  My son was almost 4 years old.

After that it was all appointments.  We immediately went to our pediatrician who looked at me like I was crazy and spoke to me like I was an overbearing and overprotective mother, but told me that he would send my son to be assessed by a trusted child psychologist who specialized in autistic, ADHD and gifted children.  When leaving the pediatrician’s office, he assured me that my son was not autistic.  We had four sessions with the child psychologist, but after the first session she let me know that there were red flags for autism everywhere.  We left after the fourth and final session, assessment complete, with a diagnosis of autism, level 1/2, most likely ADHD (she thought he was too young to give an accurate diagnosis), and gifted.

We went back to the pediatrician’s office, and he gave me no apology.  He signed off on the diagnosis and it was official, my son was autistic.

Since then we have found a new and brilliant doctor.  He is a GP who specializes in pediatrics, autism and ADHD, and who actually has three sons, one neurotypical, one autistic, and one with ADHD.  This guy knows what he is doing and has all the empathy in the world for the parents, and all the understanding in the world for the kids.  He has put my son on anxiety medication and has filled out all the paperwork needed to get us financial aid from the government.  There is help out there, you just have to find it!

Everyone’s journey to diagnosis is different, but I have had so many people ask me about my son’s, I thought I would write a post about it.  Since then, the same child psychologist has diagnosed my quirky and amazing daughter with ADHD and profound giftedness.  It is so worth finding the people you trust and dismissing the people you don’t.  Needless to say, we see our pediatrician as little as possible!