Our autism journey - BeyondAutism

Just over a year ago I sat there and was told “Your child is autistic, here is a leaflet for you to read through and we will see you in 6 months’ time, goodbye.”

I am sure this is something a lot of people reading this have heard hence why you’re reading this blog.

A bit about our journey

So let me start by introducing myself and telling you a little bit about our journey. I am Nirvana, a mother to a beautiful 4-year-old nonverbal autistic little boy.

The day we received the diagnosis wasn’t when our lives changed, for us it was when our little boy turned two. The only way I can describe it was that a light went off. He stopped interacting with us, stopped giving eye contact, stopped responding to his name and over the course of a few months stopped using skills he had mastered like waving, clapping, using utensils and all his social skills. I didn’t know what to do. I felt like I was losing my little boy and I had no connection to him, and I had nowhere to turn. As soon as I started to research it everything was pointing to autism. This is where our journey began.

I remember watching him and crying while he did the same little routine round the park thinking what do I do? Who do I go to? How do I get my boy back? Little did I realise it wasn’t my boy I had to get back, it was me that had to catch up and join him.

I had spent months comparing him to other kids so concerned with everything they were doing, and he wasn’t. I was so focused on the ‘autism signs’ and making every interaction with him some kind of speech and language therapy or OT session I was missing out on just enjoying my little boy.

While on one of my many late nights researching autism on the internet, I came across this poem by Emily Perl Kingsley and my god it changed my view.

Understanding our son

The next morning while giving him breakfast he started to flap which I now know is something called stimming, and I started to flap with him. Within 5 seconds he looked at me and laughed. This went on: when he jumped, I jumped, when he ran back and forward so did I. When he played, I didn’t force imagination play on him, I lined up his coins with him, I stacked his bricks with him. I followed his lead. And that was it, I joined him in his world rather than forcing my idea of what his world should be. The two people that loved him more than anything in this world joined him and validated him and showed him nothing but love, acceptance, and care. From the moment we joined him we got so much back.

Our journey is unique as will everyone else’s journey be, but what you will find is everyone goes through every emotion under then sun. Everyone has points where they are lost with nowhere to turn. However, everyone will have points in common and will have valuable ideas or help that could support others which just highlights why it’s so important to talk to others, share things and support each other.

I joined him in his world rather than forcing my idea of what his world should be.

Building your support village

Having a child who is nonverbal or has different needs, it’s so important to spend time learning and educating yourself because as their parents/carers you are their voice. You are the people that must fight to get the right help and support in place. You are also the people who know your child the best and will learn how best to help them and to make the world the best place for them. Tell your family, tell your friends, build your support village. Make your child realise they’re accepted.

I know you might feel it’s scary and daunting but talking about their needs, wants and diagnosis is a good thing. If you didn’t like the light on constantly you would ask for it to be off just like if they don’t like something, they will ask in their own way for it to turned off. The minute you make it an issue it becomes an issue.

I want to end this blog on something I’d like you to remember. There are going to be a lot of tough times, but you will get through it because you are everything to that person and they are everything to you. You will feel like you’re fighting the world, because you are. But lastly what I will say is amongst the heartache and tough times enjoy your child. Don’t compare, don’t apologise, don’t make excuses, just love.

Use social media, use chat groups, use whatever you can to help support you and your family’s journey.

We are in it together and here to support each other.

BeyondAutism resources

We recently launched a brand-new resource hub with loads of factsheets and information for families going through the diagnostic process. Check out the new resource here. Or if you’re interested in more in-depth information, take a look at our online training.