Having waited months to see a psychologist about our girls, I now found myself unable to stop the flow of information and observations I had stored inside. What a cathartic process!
After almost an hour, the psychologist asked me how I would feel if after the assessments there was a diagnosis of Autism? Relief was the word the left my mouth, which was the truth, but still surprised me.
Diagnosis to my husband and I meant so many things: relief yes, but also feeling vindicated and empowered, because now, we could finally help our precious girls. As any parent will agree, seeing your child/ children struggle and feeling helpless is both heartbreaking and so challenging.
Knowledge is Power and Power is Freedom!
For us, understanding diagnosis was the next big journey. Autism and Asperger’s are terms we had heard of, but honestly, knew nothing about either.
Below is an extract from a new Autism awareness website www.autismawareness.com.au:
Autism spectrum disorder, commonly known as ASD, affects how people communicate and interact with others. It affects how they make sense of the world.
Autism is a developmental condition that is typically life-long. People with autism experience difficulties with communication, social interaction and restricted/repetitive interests and behaviours. These are often accompanied by sensory issues, such an oversensitivity or undersensitivity to sounds, smells or touch. All of these difficulties may lead to behavioural challenges in some individuals.
The term “spectrum” is used to emphasise that autism presents differently in every single person. People with autism have a wide range of challenges as well as abilities.
This is definitely not a case, of one size fits all. When I was explaining to the psychologist some of the parenting challenges we were facing, she was able to explain that it was part of how autism presented itself in each of our girls. However, in our experience, once you received the diagnosis, we felt pretty much on our own to learn more about it. Parent support, which is vital, was missing. There was no time to process. It felt like the train had started to leave the station, and if you didn’t hurry up and catch up, you would miss it completely. This was overwhelming! We didn’t know what we should do first. We had the diagnosis – this label, which has a meaning that’s difficult to quantify clearly. Now what?
We found ourselves with this mile long mental to do list (with accompanying questions) appear in an instance. We needed to notify the school, but what do you tell them? We didn’t fully understand it ourselves. It was clear that there was a steep learning curve and we needed to start tackling it.
What we found invaluable, was the fact that the more we were learning about our girls’ diagnosis, the more we were able to adapt our parenting style. These small changes created a palpable difference. Knowledge is powerful! It gives you what you need to put a plan together for your child. This is paramount, as you are now their advocate and their voice where they can’t be.
All this takes care of one side of the coin, the side you can control: your own learning, devising a plan and putting things in place to achieve the plan. Now what about what you can’t control. What do you do with your reaction to the diagnosis, how do you deal with your emotions? You might tell yourself, ‘There is no time for this’ or ‘it’s not a priority right now’ – this, in my opinion, would be a huge mistake!
Just like in the safety demonstration when a flight attendant asks you to sure to ensure that your oxygen mask is fitted correctly, before helping enfants – the same goes for processing your emotions.
To be able to help your child, you must prioritise your own mental wellbeing. I know firsthand how easy it is to use any excuse, despite how noble you can make it sound to yourself, to avoid looking inwards. Avoiding this, simply makes you a walking, talking pressure cookers which given enough pressure, will blow.
With running our business and having no family in Australia, I had some pretty good excuses to avoid my processing of the diagnosis. I felt overwhelmed, not knowing where to begin, my husband and I were feeling so many emotions, but one thing was clear – I wanted to know if we were the only ones feeling this way.
Finding Your People
There was a strong desire to connect with others who had gone through or were currently going through a similar process. Despite us knowing only a handful of people, we felt blessed as among these friends, were a couple whom we love and admire and who had navigated their two children’s’ diagnosis several years earlier. Their friendship meant we didn’t feel alone in this. This has been so crucial in our journey so far.
In this friendship, we found, kindred spirit. Our positive take on an ASD diagnosis, identifying the crucial need for parents and children to understand their diagnosis and the paramount importance of self-care, created a fire that we wanted to fuel.
Autism. People have heard of it, but seldom do they understand what that means. Autism is a spectrum and is not linear. Dr. Stephen Shore’s quote of “If you’ve met one individual with autism, you’ve met one individual with autism”, is an important one to remember.
Autismspectrum.org.au states that estimates say that 1 in 70 people are on the autism spectrum. With that said, don’t we owe it to ourselves and our community to learn more about Autism so that we can create a more loving, supportive environment where each child can reach their individual potential?