A summary of our journey so far with ASD

A preschool teacher told me over the phone that my son had autism.

I had rung up to reserve a place for the next year and she asked me what my three year old was like.

“Well,” I said, a little hesitantly. “Actually, I think he’s a little bit eccentric. He might need a little bit of extra help.”

Her ears pricked up.

“Eccentric? In what way?”

“Well, he screams a lot,” I said. “And he doesn’t really talk much. He has a lot of trouble going from one thing to another, he’s quite happy in his own company and he’s a bit of an escaper. He might run away!”

There was a tiny silence and then she said, “I don’t want to be rude, but you might want to look into Autistic Spectrum Disorder. It sounds like he might have something like that.”

My stomach did a great big flump and my heart did a great big thud and I felt like vomiting. I knew there was something wrong with him. I had known ever since he was 18 months old that things weren’t right. He just wasn’t doing the same things that his older sister had done at the same age. But no one was interested in taking me seriously. My friends said, “Oh, he’s just a boy,” and my GP said, “No speech? We’ll send him to a speech therapist.” The speech therapist said, in not so many words, that he could speak, and if I was tougher with him, he’d start to cooperate more.

I waited, hopefully, for three months until we got an official diagnosis. Surely once the doctor looked at him, he’d have a solution to all the tantrums, the picky eating, the obsessive rituals, the refusals to do anything and the speech issues. Surely with a diagnosis would come a plan for what to do next, a prognosis for his future – and a cure?

I was a little too hopeful. The paediatrician told us to get emotional and family support, to contact a particular organisation and to get speech therapy. In time, perhaps, drugs might help manage the behaviours. And that was it. We were on our own.

I was devastated, and it felt like I was losing my beautiful son more and more every day to his odd, obsessive, ritualistic world. I could see his unhappiness and his panic and his anxiety and I felt like we were both drowning.

Support was hard to come by. There were plenty of people who showed an interest, of course, and many who tried to be kind, but it’s hard to care for someone with a chronic problem. No one can understand the trauma and grief of dealing with a child who screams and hits and can’t respond, day after day after day – unless they’ve been there.

The first five years were a marathon. We read books, watched videos, investigated therapies and tried lots of things that we thought might help.

In the end, the three most successful things have been the Relationship Development Intervention (RDI) program, the GFCF diet and supplements and Sound Therapy for his auditory processing deficiencies. We’ve spent a truck load of money and I personally have put hours and hours into appointments and home-based exercises and therapy. I could easily have spent double the dollars and double the hours – if I’d had the resources.

And there has been a good amount of success. At the time, I could never imagine my wild, screaming crazy preschooler making it to school or staying there. And yet now he goes every day, he’s happy and he’s about to sit his NAPLAN test. I never thought he’d have a friend, but he has had one or two over the years. Yes, he’s still odd, but he can manage to get on with some people for short periods – and enjoy it. I used to ache for him to show me some affection, but now he’s often sweet and cuddly and regularly tells me he loves me. He’s even thoughtful on the odd occasion – and he adores his baby sister.

Autism is not just something that affects the person who has it. In our family, we’ve all paid a price. I suffered three years of depression, our marriage has been strained, and there’s ongoing pressure on the other children who are still living with a brother who is difficult, unloving and incredibly headstrong. We don’t really go on holidays because my boy can’t handle it, we leave early from parties because he needs to go home and family outings are always a bit of a ‘hold your breath and cross your fingers’ affair.

On the other hand, we’ve learned a lot about real love – the kind of love that sticks it out when things are tough and that keeps hoping and seeing the best when it feels like there’s no hope and there’s nothing good.

For my own sanity, I wrote a memoir of our experience, Love, Tears & Autism, and was as honest as I could be about my own failings, fears and griefs on coming to terms with this disability.

One of the most beautiful things in my life right now is connecting with other parents who tell me that I’ve been able to put their stories and their feelings into words, even though I’ve never met them. And while I certainly wouldn’t wish anyone to suffer with ASD, I feel so privileged to share the lives of other ASD parents and children. They are such giving, loving champions and they deserve all the respect and comfort in the world.