The long road ahead for an autism parent

I recently met a lovely couple and their children at a gathering at a friend’s house. I watched her gorgeous little boy play for hours with a younger girl. The whole time they played I had no idea this boy had autism. The normal tell-tail signs were not present. The child seemed to communicate fairly well, he played nicely, he interacted with the other children and adults well and not once did I think that he could be on the spectrum.

As we were all getting organised to go home something came up in conversation and the Mum said: “He has autism.” I told her I was surprised. As a Mum with an autistic son I generally pick up on the signs. She said that all day, they too watched their son play nicely, waiting for an incident to happen which would lead them to having to pack up and go home early. However, when the dog barked, or the boy hit his head on the trampoline, there was no meltdown as one would normally expect. They were pleased with how well he interacted with everyone and played nicely with the other young girl.

As they left, I thought to myself about the journey these parents were now on. The rollercoaster of emotions that they would now face as they saw their child through his life stages.

I thought back to that time when my son was four years old. When he was the centre of my universe, and although he was sometimes challenging, I just thought he was a normal, fairly naughty, seemingly intelligent, beautiful four-year-old boy. Sure, he didn’t seem to have many friends, and he was happy playing by himself or alongside other children, but what was the harm in that? He was clumsy and uncoordinated and didn’t always listen, preferring to push the boundaries. How was I to know that this wasn’t ‘normal’ when, at the time, I had no other children to compare with?

This Mum had so many challenges ahead of her, but all I could think of was how lucky she was. She had an early diagnosis and was able to access NDIS funding to help with early intervention for her sons with speech and movement. None of this was available to me when my son was diagnosed. I wonder what our lives would have been like if we were able to access funding and receive early intervention.

This child would have so much help and support from his parents, and from ongoing funding from the NDIS that he will have an excellent opportunity to thrive and do well at school while facing the challenges of fitting into this world when he was born to stand out.

I thought about what advice I would give to myself if I could go back to the time when my child was four and I knew nothing about autism. I would tell myself:

Life is a journey, and as a parent you will always be on that journey. You will have ups and downs, highs and lows, the same as you do when raising any child. Trust your gut instincts, but also seek advice and don’t ever be afraid to ask for help. Remember, that no one is perfect, and no matter how hard you try you will never be a perfect parent, but you will always be the perfect parent for your child. You will always know and understand your child better than anyone else. Seek help, not only for your child, but also for yourself. Build a support group of trusted friends, family, teachers and support workers who will take this journey with you. Celebrate the little things, because they all matter. And, know that you are strong, you’ve got this. Even when you think you might want to give up, you won’t give up, because you are everything to this child, even if they don’t always see that, even if they never thank you or appreciate you, they need you and they always will.”


SASI Guest Parent Blogger

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