Today we are talking all about Autism. What is it? How do we know if our child may have it, what can we do about it, and how do we process it? This is a huge topic, and whether your child has autism or another neurological disorder, I know this episode will be valuable to you in some way. I am going to share my story on how Remy was diagnosed and what we have done with her ever since.
Remy is my 5-year-old daughter. She was born perfectly healthy. I had a good pregnancy, she had a good birth, all the milestones were hit in the first 9 months. Pretty typical in every way. When Remy was 9 months old, we woke up one morning, and Remy had a seizure. The seizure lasted for 45 minutes, and it took multiple drugs and her being intubated (which means tubes down her throat to help her breathe) and the heaviest of seizure drugs to stop.
After that, she had about 6 more seizures like that in the days to come. Fast forward through the next several months, and she was diagnosed with a rare genetic disorder called PCDH19. This is a type of epilepsy that causes clustered seizures and many of the girls and some boys who have this disorder also have intellectual disabilities and autism is common too.
Seeking An Answer
Remy did have a speech delay, she did have some stimming behaviors, and she didn’t watch tv (not that that means autism), but there were just some behaviors that were off. But every single person we asked about autism told us, “No Way”.
Then Remy started in-home speech therapy and did 1:1 therapy with a special education teacher, who did the same things with Remy as the speech therapist. I asked the speech therapist if she thought Remy had autism and she said, “I don’t know.” But she asked me if I wanted to have her tested and I agreed to it.
Getting A Diagnosis
I just want to say that if there is a tug at your heart, if you have a feeling in the back of your head that just won’t go away about your child, never ignore that. It might be uncomfortable. It might not be logical. But your intuition never leads you the wrong way. It always has your best interest at heart
So, we went to the autism test. We met with a psychologist and had to fill out all kinds of forms.
The psychologist also performed a series of tests on Remy which included an IQ test as well. Mostly giving her instructions and seeing how she responded.
After The Test
She gave us the results. Remy definitely had autism. The psychologist said it was apparent, but that Remy was a level 1. That means that she is on the higher functioning side of things, but her IQ was lower. She said that the kids who were nonverbal usually scored lower on IQ because they aren’t able to answer questions and follow instructions as well.
We had a professional tell us that our child had autism. I knew that wasn’t something that she could just take back. Autism was here to stay.
I asked Zach what he thought about it, and he said, “I don’t care what the test says, I don’t care what diagnosis they give her, our job is just to love her and take care of her as best as we can, and that’s just what we will do.”
After this test, we felt like we were on our own. What happens next? There wasn’t a next. That’s what I find is everyone’s reality, there’s no next. We as parents have to figure out that next.
Our early intervention program with the speech therapist and special education teacher told us about this training they had just done, called ESDM. They said it was an autism training and that parents can do it too. So before we knew it, we were signed up for this 12-week course on ESDM, which stands for the Early Start Denver Model. This is a training that a doctor came up with to teach children with autism how to thrive. It’s a play-based therapy.
This was a total game-changer. It changed our lives. We learned how to pull out communication in Remy, how to get her to go back and forth in play. We also learned how to get her to choose and point and share. Because this training was so profound, I tell everyone who has a diagnosis of autism to get this book, “Early Start for Your Child With Autism.”
What I really learned the most is that you can’t parent a child with autism the same way you do a neurotypical child. It doesn’t work. You have to learn and understand the functions of autism and start working on developing the deficits so they have a better chance to thrive.
Advice On What To Do Now
- First, take an MCHAT test. ( Modified Checklist for Autism in Toddlers, Revised.) This is good for toddlers, but I am sure you can find one for older kids too. This isn’t going to diagnose your child, but it will give you a scale if your child is showing signs that they could be on the spectrum.
- Secondly, the next thing I would say is to call your insurance company. If you call them and tell them that you want to get an autism test, they will tell you where you can go. If you just talk to your insurance, you can be saved so much time.
- Third, just breathe and don’t stress. I was so panicked when we first got a diagnosis. I felt like we were on a race against time. I still think that way in some ways, but you don’t have to throw all kinds of things at your child to change them.
One of the misconceptions that I had was that if we got enough therapy, that we could erase autism from Remy’s life. The goal should never be to “cure” autism. The goal is to learn the language of autism. Your child’s brain is running off a different operating system than yours. As a parent, your goal should be to learn that different program. It should also be to gently help your child understand yours.
- If you have a feeling in the back of your head that just won’t go away about your child, never ignore that. It might be uncomfortable. It might not be logical. But your intuition never leads you the wrong way. It always has your best interest at heart
- You can’t parent a child with autism the same way you do a neurotypical child. You have to learn and understand the functions of autism and start working on developing the deficits so they have a better chance to thrive.
- An amazing program that you need to look into is the Early Start Denver Model. This is a training that a doctor came up with to teach children with autism how to thrive. It’s a play-based therapy. It was a total game-changer and completely changed our lives.
- You do not have to panic. You will be able to figure out what the best help and resources are for your child in time. It isn’t helpful to throw everything at them at once. So the best thing to do first is to just breathe.
- Your only job is to love and take care of your child. The diagnosis has not changed them, and all you need to do is focus on taking care of them and loving them the best way you know how.