18 Months and Still Waiting for My Son's Autism Diagnosis

When we first saw Sonny’s pediatrician, we were told the waiting list for an autism diagnosis was roughly one year.

One whole year? In the grand scheme of things, that’s not too bad.

A year went by and we were told the waiting list was roughly 12 to 18 months long. We should have a formal diagnosis for Sonny by the time he finishes Reception or the start of Year 1 at the very latest.

Eighteen months in and we are still without a date for a diagnosis. It’s quite hard to describe just how agonizing the wait is.

Picture the scene:

You’re stuck in the middle of the ocean, no boat and no oars. There’s nothing around you to hold on to, there’s no one to guide you and there’s nothing in the distance signposting help nearby.

You swim in one direction hoping that this might be the route that takes you to land. You got it wrong. There’s nothing but ocean every which way you turn and when you’re not swimming, you’re treading water. All your energy spent trying to keep your head above the surface.

You’ve been swimming for so long and you’re tired.



Your body aches to the bone and you feel hopeless and helpless and completely alone in your journey. Then something amazing happens, just what you’ve been waiting for. You find a little boat. You sit in your little boat and look back on how long you have struggled. Don’t dwell now! You’ve just been given a glimmer of hope and all you need now is your paddles.

Getting a date for Sonny’s autism assessment was a huge relief. It was like climbing aboard my own little boat. Exhausted, but I finally felt like we were getting somewhere.

Yet life has this habit of throwing me that curveball and I catch it every damn time.

Over 18 months of waiting for Sonny’s assessment and then the morning of the appointment they call: “Hello, is this Sonny’s mum? I’m very sorry, I’m afraid your appointment this afternoon at CDAC was booked in error. Unfortunately, the person you need to see is on annual leave. I will call them tomorrow and make sure you’re booked in for the next available appointment.”

I could have cried. So much preparation went into today, reports to gather, arrangements to be made. So much was riding on an autism diagnosis.

I’ve been swimming for so long!

With our plans changed, we had a peaceful day at home instead. Zachary counted the pennies in our tin and we had just enough for an ice cream from Franco, (the ice cream man who so happens to stop outside our front door, I’m never sure if this is a good or a bad thing!)

We sat on the front door step and waited for Franco’s ice cream van to arrive. The sun was shining, it warmed my skin and my smile. For the first time since I got that phone call this morning, I felt like I could breathe.

I’m not giving up now, not ever.

I’m sitting firmly in my boat and I’m ready to chase up another appointment tomorrow.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Autism Spectrum Disorder

Anthony Naiboa

Potential Florida Serial Killer Shoots 3, Including Man on the Autism Spectrum

A series of murders over the past two weeks in Seminole Heights, a residential section of Tampa, Florida, has residents on edge. Three people have been killed by gunshot, including Anthony Naiboa, a 20-year-old on the autism spectrum. The police believe the killings are linked based on the timing and proximity of each incident, although the mayor, [...]

How the Arts Gave Me a Voice Before I Knew I Have Asperger's

I didn’t receive my Asperger’s syndrome diagnosis until my late 20s. So until then, I was trying to fit my autistic square peg into a neurotypical round hole because I didn’t know any better. What I did know from an early age was that the arts were my everything — my way to express myself, [...]
Sad girl in the school playground.

To Those Who Bullied Me Because I'm on the Autism Spectrum

At the time, no one really understood why I was so different. I was still undiagnosed as on the autism spectrum. It didn’t matter. You knew I wasn’t fitting in. (Actually, I didn’t want to fit in. I wouldn’t want to be like you at all.) That made me a target. You took aim, and [...]
Sonic the Hedgehog screenshot.

What My Special Interest Has Given Me as an Autistic Person

Being autistic allows me to zone in on the things I truly love. If you ask just about anyone what they’re passionate about, they can probably list a few things. For many autistics, these passions are especially strong. They may even be focused to the point where many people might call them “obsessions,” sometimes at [...]