“He is not his autism,” and 7 other things parents of kids with autism want you to know.

SDN Children’s Services
Thanks to our brand partner, SDN Children’s Services

It was almost two weeks ago that I received the call telling me my son had been approved for National Disability Insurance Scheme (NDIS) funding and a week after that I was walking into my first meeting to discuss Giovanni’s needs. The first thing I noticed as I was led into the room by our case worker was the box of tissues on the table.

Yep, I’d be needing those.

I didn’t need the tissues because I felt sad or overwhelmed. Those feelings were snuffed out long ago by acceptance and appreciation for who Giovanni, eight, is and how lucky I am to have him, autism and all. The reason I’d need the tissues is because finally, I felt like I wasn’t alone. I was now part of a system of government-led professionals whose job it was to help me figure out exactly the services Giovanni needed to access to reach his full potential.

My days of struggling alone are in the past.

Giovanni, 8, has Autism Spectrum Disorder (ASD) and after a confusing year-and-a-half we finally feel on track to help him reach all his goals so he can reach his full potential. Now we have to work on the rest of the world.

While most of Giovanni’s interventions and therapies aim to make his participation in conventional society easier for him and more acceptable for others, it’s also time the world met him halfway.

"It's time the world met him halfway." Image: Supplied.

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Whether you are disordered, disabled, have special needs or extra needs, you are still a part of the world and deserve every opportunity neuro-typical kids receive. For me, it’s now all about education.

My family and friends usually know exactly what to say and do when it comes to my beautiful Giovanni and they handle it beautifully. Of course, sometimes they don’t handle it perfectly and gosh, neither do I! But we try and bring Giovanni into our world by gently entering his.

Now I want to share what we have learned with you.

1. He is not his autism.

I detest the use of the word ‘disorder’. I always say, “my son is on the spectrum” or, “Giovanni has autism,” because to me, the word disorder does a disservice to this brilliant, amazing, special and unique little boy. He’s not a disorder. He’s just Giovanni who loves animals and Minecraft and playing endless games of UNO. While being able to put a name on his condition means we know how to help him, I’d never do anything to change who he is. He isn’t in need of a cure and he isn’t in need of a fix.

2. How and why doesn’t matter.

How Giovanni ended up with ASD and why he ended up with ASD doesn’t matter. It just is. There’s been too much focus on the causes (and possible cure) for conditions like autism, which assumes there is something wrong with these kids. It couldn’t be further from the truth. Most parents of children with autism come to realise that their kids are incredibly evolved and have unique gifts, which explains why companies like Google and Microsoft are seeking employees on the spectrum for jobs that require focus and precision.

Companies like Google seek employees on the spectrum for jobs that require precision. Image: Supplied.

3. He won’t look at you but he is listening.

Just because children with special needs and disabilities aren’t looking at you, they are still usually listening, particularly Giovanni. He won’t always respond to what is being said and done around him but later he’ll talk to me about his observations. That means he notices if you say, “hi” to him or try and include him. While he won’t always respond, your willingness to include him is noticed and valued.

4. I want to talk about him, as I want to talk about any of my kids.

Like all parents I love nothing more than to talk about my children, all my children, not just the neuro-typical ones. Each of my children is unique and amazing and special and while Giovanni needs additional help to reach all the same educational and social milestones as his brother and sister, I am just as proud of each of his achievements as I am of my other children.

5. It’s hard but it’s not a hardship.

Raising Giovanni and his brother and sister is hard, but it’s not a hardship. We’re busy, but it’s not a burden. And I’m so proud of him. He amazes me every day. You don’t need to waste any time feeling sorry for him or I, or by pointing out how difficult it must be. Raising any child is difficult, special needs or not.

6. Unless you have training in ASD, keep your opinions to yourself.

I’m not interested in speaking to people who have found “cures” for my son’s condition on the internet. That includes well-meaning (rude) family members and those who act as though autism is something shameful. I normally only listen to people who have expertise in the area. I won’t be sending Giovanni’s stool sample off to a clinic, nor will I be putting him on an elimination diet. He’s in good hands, expert hands, hands way more experienced than Google.

"He’s in good hands." Image: iStock.

7. Understand how different it can be.

Not all children with autism are the same. They are so different. One of Giovanni’s closest friends has autism but is one of the loudest, happiest kids I know, unless he is confronted with a group of people he doesn’t know. Then he’s a bit like a deer in the headlights. There’s a reason autism is referred to as a ‘spectrum’ and Giovanni is high-functioning. He’s nothing like Rain Man and is yet to show an aptitude for music or solving puzzles.

8. Children need to learn about difference.

The most challenging aspect of being a special needs parent when it comes to educating others about Giovanni, is how our entire education system is designed to ensure our children are the same. They are required to dress the same, act the same, think the same and learn all the same things. Being different isn’t something that is normalised for children until they get to university where uniqueness and difference is celebrated. Other children act out and rebel, trying to ‘find themselves’ after being denied that opportunity thus far. We need to get to kids early and teach them about difference. They need to understand that we all look different, think differently and require different things to be happy and reach our full potential. This isn’t just something that needs to happen for kids with special needs, but for all children who feel as though they won’t be accepted for who they are.

SDN Children’s Services is a not-for-profit organisation that provides support for children with disabilities or developmental delays. Children with disabilities are part of the world and as part of the world, deserve every opportunity to reach their full promise and potential in life. I can’t wait to see what Giovanni does with his life, the path he chooses and his special gifts being noticed by someone other than those who know him really well.

Call SDN on1300 831 445 to discuss any concerns you might have regarding your child, and they can direct you to the steps to follow to get help.

SDN also run regular workshops for families of children with ASD, for more information and upcoming dates, visit http://sdndisability.org.au/family-workshops/

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