Advice to the Newly Diagnosed Autism Parent

Hiya there friend,

Your child has just been diagnosed with Autism. I heard about you from a friend of a friend. Or maybe you found me on Instagram. Or you emailed me at 1 am as you were frantically googling autism in the middle of the night.

I see you. I understand what you’re feeling. I was you. I am you. You’re going to look to me for hope. You’re going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.

I know you’re in shock. Even if you knew deep down that something was different about your child, you’re still in shock. Hell, Cooper was and is completely nonverbal and there are days where I still think he will snap out of it.

We waited seven months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.

I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child.

I felt every single emotion possible. As I am sure you do, too. But they fly at you so fast you can’t actually make out one from another. It’s a flood.

Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.

I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him, this would be fine.

I could outrun Autism. I knew I could. No one had to know.

This is called fight or flight. It’s the grossest feeling ever. It’s not logical.

I get it friend. You’re an autism parent now, too. A special needs parent. You’re in a group. A group you don’t want to be part of. And you feel more alone than ever.

I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse, you still have this super challenging child. Add in everything you’ve ever heard about autism from Google and your mother’s sister’s friend’s daughter.

There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.

The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. GO GLUTEN FREE. CUT OUT DAIRY. VACCINATIONS, VACCINATIONS, VACCINATIONS, PROBIOTICS, ETC.

But the oddest feeling of all is how the world keeps going on around you. You are different. But yet your child is not. They are the same.

You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed.

You hopped on Amazon and ordered five books on autism. You joined a special needs parenting group on Facebook. You googled “Autism and Hope.” You got into bed. You cried some more. You thought about the day.

You spend hours wondering if the psychologist was wrong. You immediately Google “Autism Misdiagnosis” and find a wonderful blog post about a child cured from Autism. And you think, “this is going to be fine. This will be fine.”

Then your child will completely throw you for a loop. Or maybe you’ll see them next to a peer and the blatant differences scream at you.

This is real. This is happening. And you can’t outrun it.

You will look at your baby and see the exact same child you did pre-diagnosis. Nothing’s changed.

All of a sudden you hate the term Autism. You think if you hear it again you might scream.

Can you say it out loud yet? Can you say, “my child is autistic.”

It took me a year to be able to say my son has autism to a group of people. It still sounds odd when it comes out of my mouth.

This will sound crazy, but a day will come when you tell someone your child has autism and it’ll be a good thing. That sounds ludicrous right now. Just believe me.

The day will come and you’ll say it and you’ll see understanding in a stranger’s eyes. And you’ll be thankful that you can explain to people why your child is hitting himself in the head. Or rolling on the ground screaming.

In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.

If you’re anything like me, your first thoughts post diagnosis are “what now?” You need a plan. A focus.

The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.

I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper.

Well, maybe not all wrong. But I was panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.

So, here is my advice to you as a newly diagnosed Autism parent:

Grieve. Feel every single feeling.
Be sad. Don’t force yourself to be happy. Don’t lie to yourself either.  You pictured your child one way and now you know that may never happen. Don’t let anyone tell you that you shouldn’t be sad. Or that it could be worse. Don’t listen to stories about people that have it worse. Don’t feel guilty for being sad.

If I had a quarter for every time I felt sad and heard a story about a mother that lost her baby or childhood cancer I would be a zillionaire. People do this because they don’t know what to say when talking to a grieving person. Feel every feeling friend. Just sit in it for a little bit.

Take time to process.
Nothing is going to change right away. I thought our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis.  There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight.

By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process.

Wait to tell people until you’re ready.
I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. To this day, people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand Autism.

Don’t expect anything to change right away.
I really believed our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me to physically go the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less.

Find other Autism parents.
Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out.

Get ready for a fight.
I know this sounds funny. But it’s true. You are the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there.

You can do this.

Grief is not linear my friends. You’ll have highs and lows. Cooper will be six on Tuesday. The severe parts of his Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we’re settling into a routine or have a win, a new behavior develops.

Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.

And you know what, that’s OK.

I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.

You don’t have to fight Autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely dependent on you. You will feel isolated and alone because of this child.

I know it’s not the life you planned for. I won’t blow smoke up your butt and say that this one is better than the one you pictured. I won’t lie to you ever.

But what I do know is that you can do this. You are not alone.

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2 thoughts on “Advice to the Newly Diagnosed Autism Parent

    1. Look for local adult support groups. Many cities have groups that get together for outings and things like that.
      There are also Facebook groups for adults on the spectrum. Check out Reddit too. There are lots of high functioning adults on the autism subreddit that can help you.
      Best of luck.
      Be Well!

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