The letter I wish I had read when my children were diagnosed with Autism

From time to time, I notice a resurgence of the “letter to the new ‘autism parent’ from the experienced one” sort of articles in the blog/facebook world.

I get why these posts are popular. When your child is identified as autistic, it seems expected that people go through a period of feeling sad and overwhelmed. These letters tend to focus on that and give strategies to deal with the “awfulness” that life is with an Autistic child. 

However, I do not find the information in those articles fits my experience with my kids, or contains any particularly helpful advice for me. They never did. When I saw articles like these, even in the days soon after my first Autistic childs diagnosis, they left me feeling more unsettled…. definitely not encouraged or comforted. I figure there are others out there like me, so it is to you I am writing today.

Dear Parent,

So, your child has just been identified as Autistic.

You might be feeling a bit stunned. You might be feeling overwhelmed. You might have known for ages but just had it confirmed. You might be relieved. You might be concerned. You might feel sad.

So, what do you do now?

Well, you could go looking for a list of things to do. You could join every Facebook group you can find with “Autism” in its name. You could ask around and see what therapies everyone enrolled their kids in. You could seek the advice of other parents of Autistic kids.

I did all those things. They seemed like the most sensible things to do. After all, everything I knew about Autism was framed by the dominant belief that Autism is something that needs to be fixed in order for the Autistic person and their family to be happy.

In hindsight, though, I’m convinced there were other – more helpful – things I could have done instead. Here is what I now think it would have been helpful for me to hear.

Autism is not a tragedy that requires immediate action. Nothing has really changed for you and your child with this diagnosis. They are the same child as they were yesterday.

There is no rush. Despite what the professionals will tell you, you have lots of options to choose from now. So, take your time. Have a look around and check out what is on offer, then choose what fits best for your child and your family.

You know your child better than any one and you are capable of making decisions in their best interest.

Some people might be telling you that you have to act quickly to get services and therapies in place. They might be telling you there is no time to waste because the younger you treat Autism the better off your child will be and the more chance you have of them growing up to be normal.

I would encourage you to slow down. Breathe. Think. And read.

Do some research. Don’t just accept the dominant story you hear about Autism. When you are looking into therapies and strategies hold them up to a high standard, compare them to what you would find acceptable for a “typical” child and if the thought of subjecting a “typical” child to those therapies seems wrong, don’t choose that for your Autistic child either.

Research throughly. Read widely.

Most importantly read what Autistic adults have to say. I cannot stress this enough. Listening to Autistic adults changed everything for me.

Listening to Autistic adults changed everything for me. 

And consequently improved my children’s lives. Yes, you heard me right.

Me choosing to listen to Autistic adults has improved my children’s lives.

There are plenty of Autistic adults out there writing things you will find helpful.

Read Nick’s essay What is Autism?.

Read Landon’s book I love being my own Autistic self.

Seek out communities run by Autistic people. Communities like We are like your child, Autistic Families InternationalRespectfully Connected and Parenting Autistic Children with Love and Acceptance.

These people are your childs tribe and their words are your opportunity to truly understand your childs experience of the world.

Listen. Read. Learn.

And hope. In the face of all the negative talk, all the tragedy rhetoric, all the despairing messages from “autism parents”…. hope. HOPE.

Things may be hard right now, but they will not always be. You will find your way. Your child will find their way. Spend just a little time with the sadness that follows a change of plans if you must, but move on to hope. You will be happier for it and so will your child.

With you on the journey,

Michelle

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