Navigating the diagnosis

In the space of a few days I had my son’s childcare centre, my GP and the Speech therapist all ask me “has anyone suggested your son has Autism”.

Panic. Pure Panic. What did they mean? What did this mean? The previous two years had been pretty challenging but I didn’t think for a minute that there was something wrong. I put those challenges down to the fact that I was a first-time mum, trying to juggle my old life, my career and this new human in our lives! After all, I had spent my entire life as a super-organised, career focused woman. I was successful at my work and could troubleshoot many issues in the workplace. My capacity to deliver and organise multiple priorities at any given time was exceptional. But motherhood, I was soon learning, was an entirely new set of skills!

I started to ask myself what was really going on here? What was Autism anyway? The first thing that popped into my head, is what many others ask me regularly now, isn’t that what “Ray”, played by Dunstan Hoffman had in the movie Rainman. That didn’t seem to match my current reality with my son. Surely this wasn’t right.

A google search quickly informed me of all the negative aspects of Autism. The information was overwhelming. The literature was telling me my son would have no friends, would isolated, have significant additional risks of mental ill-health, increased suicide rate, difficulting at school, difficulty learning. I was devastated. How could this be happening? Surely there were more positive things to focus on, like helping my son?

It’s at this stage, what I now recognise as a grief kicked in. The hopes and dreams of what I thought my son’s life should be like. What I thought being a parent should be like. What I thought being part of a mothers group should be like. What I hoped for my son, his childhood, his education, his career was soon replaced with thoughts of “what do we do now”, “how can we help him be the best he can be”. My experience was vastly different to other first-time mum’s.

It wasn’t long before we were off to the Pediatrician on the advice of our GP. Within weeks we were swept away in the process of testing, questioning, a process that we had no understanding of. Questions upon questions about our child’s behaviour, our approach to the behaviour. Many of these questions made us feel that we were doing this parenting thing wrong. That we had lost control and didn’t know how to manage a child.

What seemed like an endless stream of appointments between trying to maintain our employment and some semblance of life, we came away with a diagnosis of developmental delay, not otherwise specified. We had no idea what this meant….. After navigating this diagnostic process for twelve months, we were extremely confused. The advice was to attend Early Intervention. What even was that? Intervention for what? What was the role of these services?

A few days after the birth of my daughter, we were discharged from hospital but instead of heading home to enjoy time with our newborn, we drove to our first session of Early Intervention with our son.

The first session was harrowing, more questions, more forms and more questions. The therapists spent time watching and trying to get my son to do what they wanted him to do.

I felt exhausted and exasperated. We had no idea what we were doing, no real guidance, we were at the mercy of a system of amazing professionals but people we didn’t know. Do we just do what they say? Isn’t that what new parents do? Should we read more? Should we talk to more therapists?

At home things were escalating, the behaviour was even worse than before. In hindsight, many years later we know that sessions like this would have been extremely triggering for our son.

As we started to share the news with our friends, family and colleagues, their response was “all kids were like this, what were we talking about”? This is normal behaviour they would say. I couldn’t help but feel alone and unsupported.

One of the therapists gave me this poem.

WELCOME TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
c1987 by Emily Perl Kingsley. All rights reserved.

 I still get teary when I read it 16 years on.

Two years after our first tentative diagnosis, and following another set of appointments with the diagnostic team, we received the diagnosis of Autism, or Aspergers as it was known as back then. High-functioning was the term used.  My son was 4 years old. When we got the report, I remember sitting in a cafe crying. Just pure grief and not knowing what this would mean for my child and our family.  What would this mean for his quality of life? 

There was no offer of support as the carer. It was an extremely lonely period in my life.

On reflection, what my experience has taught me is that there is really no single response to any of this.  Three things I found useful were:

  • Knowledge –  for me it helped me understand Autism and how it can present in different children and that we could approach this with a positive mindset.
  • Educating – Documenting how to work with our son. When we told friends, family, carers, pre-schools that our son had Autism there would be confusion about how to work with him or support him.  Having a clear picture on how Autism presents in your child, triggers and ways to support them was invaluable throughout our journey, even into adulthood.
  • Self-Care – Staying connected with what you personally enjoy doing – whether it’s exercise, meeting up with friends or your professional career.

Looking back, I think if I’d dealt with the grief at the time of diagnosis it would have empowered me to recognise and connect with my own emotions. To understand my feelings and acknowledge the grief would have allowed me the space to understand and better help my son to connect with my son’s emotions during this toddler phase.

As the poem suggests, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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