Advice for Parents of a Newly Diagnosed Child with Autism

Kate Swenson by Kate Swenson Additional Needs

Kate Swenson

Kate Swenson

I am a mother to two amazingly wild boys, one with non verbal, severe autism. I am here to give you an honest and raw glimpse into our beautiful life.

You searched through what felt like hundreds of blogs until you found a story that sounded like yours.

Hello. I see you. I understand what you are feeling.

I was you. I am you.

You are looking to me for hope and answers.

I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock.

When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible.

We waited for 7 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. The words felt foreign.

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 are flying 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. And it’s the grossest feeling ever. It’s not logical.

I get it friend. You are an autism parent now too. A special needs parent.

You are in a group. A group that 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.

Then add in everything you’ve ever heard about autism from Google and your mother’s sister’s friend’s daughter.

The advice is pouring in. Random friends of friends are emailing you.


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 exact same child. They don’t know they have a diagnosis.

You feel so confused.

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 5 books on autism.

You joined a special needs parenting group on Facebook, 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 and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will 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 has 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. Even to this day it still sounds odd when it comes out of my mouth.

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

The day will come and you will say it and you will see understanding in a strangers eyes.

And you will be thankful that you can explain to people why your child is hitting them self 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 are 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 so 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 parent:

Grieve. Feel every single feeling. -Go easy on yourself. We all know you still love your child just as fiercely as you did yesterday. This is just hard stuff.

-You were pregnant just like every other mother out there and never once did you pray for a child with special needs. It’s ok to be sad.

-You pictured your child in one way and now you know that may never happen.

Take time to process. -Nothing is going to change right away. I thought that our lives would change immediately once we had a diagnosis. I was wrong.

-It took months for us to see any services.  There was no medication. No magic pill. Honestly, there was no hope given. 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 and put way too much stress on myself.

Wait to tell people until you are truly 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 sad. I also had no answers.

-I didn’t know how to answer people’s questions. Still 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.

Find other Autism parents and resources.

-Build a village around your family. Find the best people to help and support your child.

-Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out. Don’t isolate yourself.

Get ready for a fight.

-I know this sounds funny. But it’s true. You are now 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. When you love something as much as you love your children you are going to have highs and lows. I still do.

That’s life and you are human.  Starting kindergarten was a toughie for me. It was supposed to be a joyous time in my son’s development and it was overshadowed by the lens of special education.

It’s a journey.

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 and solely dependent on you.

And good god friend you will feel isolated and alone because of this child.

Build your village. Find the best people and resources that fit your family.

I know it’s not the life you planned for…but I can promise you that you will get through these hard times.

You can do this. You are not alone.


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