Today we are talking all about Autism. What is it? How we know if our child may have it, what we can do about it, how 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.
Before I get into all the information and definitions and all that about Autism, let me paint a picture about my journey to give you some background especially if this is your first episode you are tuning into.
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 breath) 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.
Is it Autism?
Because I knew that autism was prevalent, I watched everything Remy did in those early days because I was scared she might have autism too.
I didn’t know anything about autism except for what you hear on the media. Which I now see is not much at all and very useless information. So I basically looked at all the ways Remy wasn’t normal. That was my basis of trying to diagnose her or not with autism. Sad, I know. But hey, I didn’t know.
The little I did know about autism was this. If kids line up their cars or flap their hands or didn’t give eye contact, they had autism
Remy didn’t do any of those things. She didn’t line up cars, flap her arms, and she did give eye contact.
So in those early days, I would say between the age of 1 – 2, I didn’t give this too much concern.
Started Seeking An Answer
Remy spent a total of 10 weeks in the hospital around the age of 18ish months old.
She was having about 50 – 100 seizures a day and needed an iv medication and use of oxygen to get her through those seizures, so we were in the PICU for a long time.
We got pretty familiar with the neurologists, doctors, nurses, all of the staff, so I asked everyone if they thought Remy had autism.
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.
Every single person we asked about autism told us No Way. There’s no way Remy has autism. She’s way too social, she is way too engaging, there’s no way she has autism.
So I didn’t really worry about it.
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.
Along with this in home 1:1, we attended a weekly playgroup. This playgroup was with all the other kiddos who received early intervention.
The abilities in the class were varied. Some kids had mobility issues, some had motor issues, some were intellectually disabled, and then there was Remy. At the time, the ONLY thing I thought was different with Remy was that she was delayed in her speech. But being in this playgroup showed me that she wasn’t typical in other ways too.
She never wanted to do the group circle time. She liked the songs but would run off to play as much as she could. I was always having to go catch her.
Anyhow, from the time Remy was 2 to the time she was 2 ½, I started to see more deficits, but I just figured it was the number of seizures she had and that she was on drugs and spent so much time in the hospital.
There were some things she did that I looked at as quirks and just a part of her personality. And here’s the thing, every human being is unique. So its impossible to compare one person from the next, everyone’s different. So this made it hard to know if some of her quirks were just Remy or because she had something more serious going on
I started reading more about autism. I had this tug pulling me, and I couldn’t figure out what it meant. Now I know it was my intuition leading me in a direction and I was aware enough to follow that. But at the time, it was just this nagging feeling that I couldn’t shake.
I read about kids being repetitive. Well, Remy definitely was. She would bang on objects over and over.
I read that kids liked to line things up. Remy didn’t line things up, but she was fixated with stacking Lego blocks on top of each other to make a big tower.
I read that kids with autism would flap their hands. She didn’t do that, but she did do this thing where she would stiffen her arm and hold her breath when she was excited. Almost like the moment was SO FREAKING exciting that she couldn’t contain herself.
I remember the special ed teacher was telling me that this is something that everyone does, it’s just most people can contain themselves.
So one day, I asked the speech therapist is she thought Remy had autism. She said, “I don’t know.”
This was the first person who had a different response than “no way” I asked the special education teacher who worked with Remy 1:1 the same question, and her response was the same “I don’t know.”
She then asked me, would you like to have her tested?
I don’t know why I never thought about this before. Maybe part of me didn’t want to really know. If I got her tested, then it was too real, and there would be no going back.
But I told the teacher “yeah, let’s do that.”
So she set it up.
All we had to do was show up for the test. But the test wasn’t for another couple weeks. So in that time, I went a little nuts
I stayed up every night researching and trying to learn everything I could about autism. I took the tests online
I read everything I could on the Autism Speaks website. I read blogs and articles and studied as hard as I could.
Still, I couldn’t figure out if Remy really fit into any of these characteristics.
Trying to Self Diagnose
One of the things I read is that if you call a child’s name from the other side of the room if they have autism, they won’t turn to look at you
So, I tested it. I called Remy’s name over and over at different times and situations. She would look at me about 25 – 50 percent of the time. I thought the other times she didn’t, was just because she was interested in what she was doing.
I watched to see if she gave me eye contact and she did. That was no problem.
Another thing I read was that people with autism don’t pretend play or makebelieve play.
I noticed one day that Remy was playing with this barnyard playset. She was playing with these animals which to me, meant that she was playing “makebelieve”
‘If Remy was pretending with these animals, then there’s no way she has autism.’
So the next day, the speech therapist came over to do her session, and I showed her how Remy plays with her barnyard.
I was excited to have finally got the answer that I was looking for. How could Remy be autistic if she can pretend play?
The speech therapist asked me “I see her playing with this barnyard, but look at what she is doing. When she holds the horse, is it saying “neigh” when she has the sheep, are the sheep drinking water or playing with the pig?
I said, no, she doesn’t play with them like that, she just takes the animals and lines them up in the barnyard.
That was what answered my question. I knew at that point that Remy had to have autism.
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. 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.
The forms Zach and I filled out, were sectioned off into different categories. The questions varied by type but all were related to social, repetitive behavior and rigid interests.
We had to fill in the bubble. By saying that she never did that behavior, sometimes, or often. Some examples of questions were:
Does your child pick up objects and give them to you?
Does your child use sounds or words to get your attention?
Does your child show interest in a wide variety of activities?
Does your child show emotion by smiling or laughing?
After we answered all the questions, she scored up the answers in her office as we waited in the lobby in suspense. But of course, in my heart, I knew the answer.
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.
So we left the office with our little Remy and went to dinner. It felt like a strange dinner. Now we had information about her that was official and documented. 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.”
I know right? So sweet. But it got me thinking. Does this diagnosis really define Remy? This answer was going to be one that I had to take a lot of time to explore. I needed to grieve.
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.
It’s not like you get the diagnosis and just have all these things pop on your doorstep.
So I did what I do best, I Googled the crap out of the words “what next”.
I saw articles and blogs about ABA therapy. I read all the horror stories about it and how its abusive and people that went through ABA came out with PTSD. That freaked me out because I didn’t want to do anything that would give Remy PTSD.
But then the other articles talked about how you have to get treatment as fast as you could so that their “Autistic” ways wouldn’t stick.
So I had to get her help, but not ABA because of that’s abusive, so then what?
It all was confusing and I didn’t know anyone else with autistic kids so I couldn’t call up a friend and ask them what to do.
But here is where we got lucky. 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 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.
So without knowing anything, we started up on this training.
There were 4 families in our group. A psychologist who taught us and her assistant as well.
What we did was we would go to a parent training for 2 hours one day a week, then there was a parent-child playgroup once a week as well.
During the parent training, we would learn about the topic of the week and apply what we learned at home. Then at the playgroup with our kids, we would play with Remy while being coached on how to work on the skills we learned.
This was a total game changer. We learned so much about autism in that 12-week training. It changed our lives.
We learned how to pull out communication in Remy. We learned how to get her to go back and forth play. We 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
So primarily, this book teaches everything we learned.
When I first thought about sharing Remys journey, I thought about this training and that I feel that every single autism parent, needs this training. I knew that one of my main focuses would be to share what we have learned. So to say this book and training was a life saver for us is an understatement. It gave us roots on understanding our little girl.
On the podcast, I am going to do a 6-8 episode series to go through this book and training. So please subscribe to the podcast so you can get the episodes as they come out.
What I Learned
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.
One thing I learned is that kiddos with autism are so much into objects, that they pay more attention to objects than people. So that means they aren’t absorbing from people social skills, speech, body language and tone of voice. Those things confuse and overwhelm kids with autism so it’s our job to encourage them to pay attention.
What I love about this book and training, is it teaches you how to.
This is one of the reasons kids speech is delayed (not always, but sometimes) or they learn at a slower pace.
What is autism
Now I will tell you a little about what autism is. This helped me understand things a little bit better.
According to autism speaks, the definition of autism is
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.*
Its a spectrum disorder may have heard high functioning, low functioning, mild or severe, what that basically means is the level of dependence on others to take care of their needs. On the low functioning, people need help dressing, eating, completing a task, communicating, and high functioning would be that odd guy that’s super smart with challenges connecting with people or following social cues but could live and be successful in daily living.
Social communication challenges
Children and adults with autism have difficulty with verbal and non-verbal communication. For example, they may not understand or appropriately use:
Spoken language (around a third of people with autism are nonverbal)
Tone of voice
Expressions not meant to be taken literally
Additional social challenges can include difficulty with:
Recognizing emotions and intentions in others
Recognizing one’s own emotions
Seeking emotional comfort from others
Feeling overwhelmed in social situations
Taking turns in conversation
Gauging personal space (appropriate distance between people)
Restricted and repetitive behaviors
Restricted and repetitive behaviors vary significantly across the autism spectrum. They can include:
Repetitive body movements (e.g., rocking, flapping, spinning, running back and forth)
Repetitive motions with objects (e.g., spinning wheels, shaking sticks, flipping levers)
Staring at lights or spinning objects
Ritualistic behaviors (e.g., lining up objects, repeatedly touching objects in a set order)
Narrow or extreme interests in specific topics
Need for unvarying routine/resistance to change (e.g., same daily schedule, meal menu, clothes, route to school)
So that is the definition of autism. Now, of course, this is broad. There are going to be strengths and weaknesses with every child
There’s a saying that if you have met a person with autism, you have met a person with autism.
What that means is that you can’t compare one child to another because everyone is different and they have strengths and weaknesses in autism and not. So you might look at one autistic person and wonder why your child doesn’t show any of the same behaviors.
So Now I want to talk about the 3 common types of autism. I thought this was important because it’s so confusing. According to the DSM 5, these different types aren’t recognized anymore but I feel it’s important to mention anyway.
Whats the DSM-5?
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the handbook used by health care professionals in the United States and much of the world as the authoritative guide to the diagnosis of mental disorders. DSM contains descriptions, symptoms, and other criteria for diagnosing mental disorders. It provides a common language for clinicians to communicate about their patients and establishes consistent and reliable diagnoses that can be used in the research of mental disorders. It also provides a common language for researchers to study the criteria for potential future revisions and to aid in the development of medications and other interventions.
So the DSM-5 now says there is just one diagnosis. But it’s helpful to branch them off because the spectrum is just too broad.
3 types of autism
Autistic Disorder (also called “classic” autism)
This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have an intellectual disability.
People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.
Advice On What To Do Now
Here are some helpful pieces of information if you are in the beginning stages of trying to get a diagnosis, or are thinking that your child could be demonstrating behaviors common in autism.
is to 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 the signs that they could be on the spectrum.
Call your insurance company
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. I have failed at getting the pediatrician to do anything. They always seemed to scratch their head. I even had a hard time with the neurologist.
I believe it has to be a certain type of psychiatrist or psychologist. Your insurance company will know.
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.
Let me tell you. You will lose. It cant happen. Sure there are those stories about how people have been “cured”. I personally don’t believe that is true but everyone has opinions.
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.
Some people have PC computers, some people have MACs. They both work but have different programming.
As a parent, your goal should be to learn that different program. It should also be to gently help your child understand yours.
When they can learn some of the tools to interact and learn from other people, that’s only going to help them in life. And that should always be the goal. It should never be to CHANGE them.
They are fine the way they are. They are made in the image of God, and you should respect that.
My life long goal now is to come into Remy’s world and pull her into ours. It’s a dance and balance.
But one thing is that you can’t expect only to teach them. You will find that you will learn a lot more about your child if you embrace their autism than if you try and suppress them and mold them into being like you. You will lose and so will your child.
So for the next 5-9 episodes of the podcast, we are going to move through the book called
Get the book, it’s a total game changer and one of the best ways to learn about your child and help them as well.
Thanks for stopping by and hearing me talk about one of my favorite subjects and people, my little girl Remy Lou
Can’t wait to dive in next week, see you all there.
Again, here’s the link to the podcast. Accepting the Unacceptable