“Everybody has a heart that can be touched by something.”
― Naoki Higashida The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
Autism is not treatable.
It is a lifelong, debilitating condition that one must live with. For life. It’s in the wiring, it’s the way they are born, it’s genetic, there may be predisposing factors but they likely happened in utero. And being that it’s genetic, it’s in the wiring, it’s from birth, it’s in utero, there is no way to undo any of the effects of it. Therapy is prescribed as it may help them learn to deal with some of the things that are inherent to autism, like sensory processing difficulties, or it may enable them to gain a little speech perhaps, but really, it’s unfortunate that so many people are instilling false hope in parents.
Our Journey with Autism
I don’t remember the first time that I was introduced to autism, but it was likely in the same way that many of us were: “Rain Man”. I remember seeing the movie and being amazed at Raymond’s gifts and being touched at the end when they said he would never connect with his brother … and then he did. I really didn’t understand it at all, but I thought it was a beautiful story.
I remember watching Oprah once when my son was just a little guy (maybe somewhere between 6 and 12 months??). I’m not quite sure why I was watching it, as I rarely watched Oprah, but it happened to be the episode where she interviewed Jenny McCarthy about her son having autism and how Jenny felt that vaccines played a role in her son’s developing autism. I remember thinking it was interesting, not very likely, and how thankful I was that my son didn’t have autism.
The next thing I remember was taking my son to the doctor’s office when he was 15 months old to get his immunizations. Although I don’t really remember anything sticking out in my mind at the other times he was vaccinated, I do remember this time because I was nervous about him receiving the MMR. After all, wasn’t that the autism shot? But as a nurse, I knew that vaccinations were important and that I should vaccinate him. I still felt nervous, and his doctor assured me that it was safe … and he received his MMR that day, along with a couple of other vaccinations. He developed a fever and was fussy.
Exactly a week later, he developed diarrhea. This diarrhea became chronic until he was having it up to ten times a day.
By his 18 month appointment, he had lost all of his language. Before his 15 month appointment, he had been saying “mama”, “go bye-bye”, “all done”, “bath”, “ducky” and several other words and sounds. These all went away (RED FLAG!)
However, we saw our doctor’s nurse practitioner who assured me that boys talk later and we would reevaluate him when he was two. And then, he received several more vaccinations.
By the time he was two, diarrhea and daily meltdowns had become a regular part of his life. By this time, I had another baby who slept no longer than 45 minutes at a time (day or night) for the first 8 months of his life, so I really wasn’t coherent enough to realize that something was very wrong with my oldest. We took him in for his two-year checkup, and I brought up my concerns to his doctor about his language skills (or lack there-of). She wrote a referral for speech therapy, which I was grateful to finally get. However, I did notice her watching him very closely as he walked around her office aimlessly. It made me feel uneasy, like she knew something I didn’t, but she didn’t say anything about it to me.
Our first trip to speech therapy was a nightmare. The second visit was no better. The therapist would let my son play with a toy, take it away from him and hide it in a cupboard, and try to make him verbally ask for the toy before he could have it back. Um, ok? I ended up carrying out a screaming and kicking two year old along with a baby in one of those ginormous infant carriers on both sessions. Then we got a bill for $350 AFTER insurance coverage for those two sessions.
I decided that I would teach him to talk at home. After all, what could be so hard about it?
In March of 2010, I was blessed to have a coworker tell me about Early Intervention, which I should have heard about long before then (my son was then almost 2 ½ years old). This coworker had a son with autism and she said Early Intervention had helped them so much. So that month, my son was scheduled for an evaluation in the home by the Early Intervention team, which would include a nurse, a speech therapist, an occupational therapist and a developmental therapist.
Prior to their coming, the nurse (case worker) met with us and asked several questions and gained a history on my son. I don’t remember much of what she said, but one question stuck in my mind: “Does he hand flap?” I quickly said, “No”, as I wasn’t sure what hand flapping was but I was pretty sure that he didn’t do it (whatever it was).
After she left, I googled “hand flapping” and was soon confronted by multiple YouTube videos of autistic children “hand flapping”.
My heart sunk in my stomach.
I spent most of an entire night watching videos of different children with autism, and by morning, I knew that my son had autism. There was no doubt. And yes, he hand flapped. All day. Whenever he was excited. When he was upset. And just because.
Our home evaluation was the end of March, and he ended up being evaluated at a 9 month level for both expressive and receptive speech. Expressive was what he could say, which I wasn’t surprised at because he couldn’t say much (mostly sounds). But receptive speech (what he understood) hit me like cold water. He couldn’t even understand what I said. There was no way I could teach him to talk by myself. He didn’t even understand me.
As I started taking videos of him and evaluating them later, it became clear to me that he really didn’t understand me. How did I never see it before? How did I miss all these signs?
I began pouring over home videos. The thing that struck me was that we have multiple videos of him at 11 months (we took a trip to Europe at that time) where he is interacting, babbling, imitating, sharing … all these things that he no longer did at 2 ½ years old. What had happened?
For example, this video shows us in Switzerland where he had just discovered how to drive a diesel-fueled car, even imitating the sound of the engine and how Papa would adjust the air. And he’s clearly amused at my attempts to engage him. (Notice too how he responds to his name.)
Then, this video at 2 yrs. 9 mo., after already making huge improvements on a special diet. He is stimming and spacey in this video, but he attempts to say three words: bubbles (“bee bee”), please (“puh”) and open (“ah”). However, you can definitely see the difference in the degree of engagement between the video from Europe and this video almost 2 years later.
He ended up getting an appointment with a child psychologist in June of 2010, but I didn’t want to wait that long to know for sure. A friend of ours with a grown son with autism recommended a psychiatrist, so we ended up seeing her first. On April 20, 2010, our son was diagnosed with autism. The psychologist in June would confirm it.
Many stories that I read discuss the shock, the horror, the tears of diagnosis. I didn’t feel any of those things. I had already spent the last few weeks researching and learning, and in my heart, I knew my son had autism. Hearing it out loud was hard, yes. But it also was a relief.
Because even from the beginning, even though I heard many things to the contrary, I knew one thing:
Autism WAS treatable. My son would get better.
A Bumpy Road
However, this doesn’t mean that it was easy. We had no support from any of our local organizations. Through my research I had heard about a diet for autism where you removed gluten (wheat) and casein (dairy) from the child’s diet and somewhere around 70-80% showed improvements. Remove soy as well and the number went up to 90%. I brought up the GFCF to our local Easter Seals (autism group) and was told not to do it because it was “dangerous”.
Anyone I talked to told me autism was lifelong. They recommended therapy but that anything else was only false hope.
And this is where I want to thank our family doctor. Because when I talked to her about the diet and what everyone was saying, she told me, “Try it! What can it hurt?” and said to come back in a month (and then she cried in the office when he interacted with her for the first time a month later).
The day after his diagnosis, we started a gluten and dairy free diet (cold turkey). I went to the store armed with a multiple page list of fine print with ingredients I had never heard of before but that contained gluten so that I could avoid them. Before anything went into my cart, I had to read every label and compare it to my list. It took me four hours, but we were gluten free.
A week after starting the diet, my son had his first formed stool in 15 months. That in itself was enough to convince me that he needed the diet.
Because when I’m talking about diarrhea, it’s not what you think. This was EXPLOSIVE, as in, I’d see him standing in the corner and then it would erupt like a volcano up over the top of his diaper, up his back, and out the bottom, down his legs. I would grab a towel to wrap him in and run him to the bathtub. Sometimes I would follow the trail of diarrhea around my house to find him. His little bottom would be raw, full of open sores and bleeding. If his bottom looked like that, what did his poor little insides look like?
He would often lean his belly against furniture and frequently screamed much of the day away. Little things set him off. Often whatever was in his reach would be instantly thrown. I had holes through my walls everywhere that I would regularly have to patch and repaint, as we were also trying to sell our house at the time and were having regular open houses.
When we went out in public, I never knew what would provoke a meltdown. He liked to play with doors, opening and closing them, and sometimes if someone would get in his way (like heaven forbid, they actually wanted to walk out through the door!), it would lead to a massive meltdown. One thing that helped was lying him on the floor and me lying on top of him to apply deep pressure, allowing him to creep out from under me. This could help him calm down pretty quickly, but it brought on a lot of stares from strangers if they happened to see us! Sometimes wrapping my arms around him and applying deep pressure into the ground helped. But every day he changed, so every day something else worked. What worked the day before may not work the next day. During these meltdowns, too, there was always the opportunity for him to hurt himself. He would slam into things, throw things, try to slam his hands through glass … we had to remove the closet doors because they were mirrors, but the windows had no choice but to stay.
Then he started wandering. I still remember the time he got away from me and made it out the doors of a giant stadium heading toward the pond when an attendant caught him and somehow found me (the frantic mother probably gave it away). I sobbed and hugged him when we found him. He was oblivious that anything was wrong and looked at me like I was crazy.
He didn’t know his brother existed until his brother started pulling up on things and getting into his neatly lined up cars or alphabet magnets and throwing them to the ground. Then he started to knock his brother down … regularly. Sometimes I wonder if his little brother did it on purpose to get the attention from him that he desperately wanted.
After a couple of months on the diet, we wondered if it was really doing him much good in terms of his behavior. And then he grabbed a bite of some kind of cereal puff at a friend’s house. I stopped him before he got more, but it was enough. For a week, the horrible diarrhea returned, along with the screaming, raging and nightmare behavior along with no sleep. After the week was up, things improved again.
The diet was working!
At this same time, he was receiving speech, occupational therapy and developmental therapy through Early Intervention. I remember feeling a lot of despair because honestly, he didn’t even know they were in the room. I still remember the day when he looked up from what he was playing with and looked at them and with the most puzzled look on his face, like, “When did you guys get here?”
And by four months on the diet, he started calling us by our names again: “Pa-pa”, “Ma-ma” and “Ki-ki” (his brother). I didn’t cry much in the beginning, but hearing him call me “Mama” again was one of those times. I still cry when I think about it.
Another time was when we did a Floortime Intensive. Floortime (also known as the Greenspan Method) is a relationship developing therapy where you enter the child’s world and then draw them into yours. We went to a facility in Northbrook, IL and worked with a speech therapist and occupational therapist who had been trained in Floortime for a week. By the second day, my child who was TERRIFIED of movement allowed me to hold him as we gently sat in a large tube swing (an inch off the floor) and he cuddled me for the first time in so, so long (by that time, it had been about 2 years). The therapists told me to sing a gentle song to him, and somehow I managed to sob it out.
Over the years, there were many ups and downs, but mostly ups from that point.
I had hoped by the time he was five years old that autism would be a thing of the past. He reached five, and still had autism. But he was verbal, interactive, loving, and was showing us his beautiful, sensitive personality. We would do regular testing (annually, before and after interventions, etc.) called ATEC testing, which helps show the severity of autism. I wish we would have done ATEC at diagnosis, but the first time we did it was a few months into treatment, when he scored about a 90. This is moderate to severe autism, with a slim chance of independence as an adult. By the time he was five, this score was down in the 20s.
Then he had to have surgery, which included anesthesia. We had learned that he had some genetic mutations leading to difficulty with his detoxification pathways, so we were very concerned about how he would handle anesthesia. We worked with a couple of doctors experienced with autism and anesthesia, but he still had a huge regression after the procedure. The worst part of it was that he started to lose weight and didn’t gain any for 1 ½ years. He completely fell off the growth charts.
At the same time, his little brother (who was now almost 4) was having difficulties of his own. From the age of 18 months he had been dairy and gluten free as well, after having horrible reflux, chronic constipation, skin rashes, eczema and more. By the time he was 4, he had difficulty focusing on anything, was very hyperactive and impulsive. Plus, he was developing food allergies and intolerances more quickly that I had gluten free grains to substitute. He ended up being down to a handful of “safe” foods.
That’s when we started the GAPS (Gut and Psychology Syndrome) Diet.
I won’t say that it was easy, because it wasn’t. Although I was used to cooking and made many things at home, I still enjoyed all of our gluten free processed goods because it gave me a break. And getting two little boys (especially as my youngest was SUCH a picky eater, even of the foods he could tolerate) to eat sauerkraut and cups of chicken broth was no easy task. It took a strong will on my part to not cave and give in, but fortunately, autism had taught me that.
Fast forward to today.
My boys no longer have food intolerances. My youngest son has absolutely no symptoms of anything; he even tolerates dairy, which I never thought would happen. He loves school and sits at the table while he does his schoolwork.
My oldest son is a grade ahead in his schoolwork. This last fall he graduated from occupational therapy. Eleven days ago, he graduated from speech therapy. Last October he stood in front of an audience of 70 people and read a passage from the Bible … on stage, with a microphone. He loves writing stories, can run and play and loves the playground (even the swings and swinging bridges!!!!), and says his brother is his best friend. He has an imagination, can talk for minutes about his day, and loves to snuggle with me at bedtime every night. Not a day goes by where he doesn’t tell me he loves me or gives me a hug.
Does he still have autism? Yes, there are still things about him that can be classified “autistic”. If I took him to the psychiatrist and psychologist who diagnosed him, would he still qualify as having a diagnosis of autism? Maybe not.
I did the ATEC testing again tonight, and he scored a “19”. Nineteen is still autism (0 is no autism), but how many of us would actually score a zero? According to the test, nineteen is a capable, able adult who can function in the world. Does he think differently than the rest of us? Maybe, but then, so do most of us. Who’s to define normal? And honestly, I hope that he never is “normal”. When I watch kids playing on the playground, with their mean games and dirty mouths, I hope that he’s never “normal”. Recently I was feeling sick, and he was the first one in my family to come, rub my arm and say, “Sorry you’re sick, Mommy. I hope you feel better tomorrow.” He’s so sensitive with such a beautiful soul.
So, is autism treatable? You bet. Does it mean changing who he is? Absolutely not. I value the beautiful person that he is. But had we never treated his autism, we never would have discovered his true self. Leaving a child who is miserable and in pain without the ability to speak who screams all day and never smiles and say, “Well, that’s just autism. That’s gonna be his life” is not right.
Unfortunately, despite help there are some kids who will not improve much. Maybe they never will speak. But can we do something to help their digestive pain? Recently, they came out with “groundbreaking” research showing that at least 90% of children with autism also have digestive complaints. So, even if they don’t speak, helping them to not be in pain is a worthwhile goal. It’s treatable.
I will continue to support my son as he grows. I’m not blind to the fact that he will likely still face challenges, some unique to autism but some just common challenges of childhood. We recently learned that he suffers from chronic viruses and was born with Lyme disease, which causes brain inflammation for him; he also was diagnosed with a seizure disorder, which his neurologist says is the result of his vaccinations at 15-18 months.
But I’m hopeful for what the future holds.
I mentioned earlier that I didn’t cry much after his diagnosis, and I didn’t. I was too busy spending my days dealing with an out of control, miserable child, a baby that never slept, and spending my nights reading and researching how to make it better.
There was one time I do remember crying, though. I was praying one night, pouring my heart out. I worried about how my son would ever come to know God. After all, I was told that children with autism can only think literally; how would he understand something abstract like someone he couldn’t see? I prayed about all of this, and then I begged God that nothing else mattered as long as my son could come to know Him, that he would have the ability to do that.
And my prayers were answered. I’ve never seen a child with such a deep faith. He writes songs praising God, he sees God in every creation that he sees, he talks about not doing something because God doesn’t like it. Yes, even his faith is black and white, but God is very, very real to him. And I know that this faith he has will help in the future as he faces more challenges related to his autism.
So, for everyone out there who has a child with autism, never give up on them. Even if they are nonverbal, violent, and seem like they are unaware of what’s going on, they are in there and deserve a chance to come out. If you do not have a child with autism but have some firm, preconceived ideas about what autism involves, take a moment to forget all the controversy surrounding autism: vaccines, violence, “faulty” studies, who autism’s spokespeople are … and just remember one thing:
Autism IS treatable. And they deserve a chance.
Never ever lose hope.
“Autism is part of my child, it’s not everything he is. My child is so much more than a diagnosis.”
― S.L. Coelho, The World According to August – One Good Friend
Originally published January 12, 2015
Edited to update, December 2021:
Our son is now 14 years old. He is a freshman in high school and continues to thrive scholastically. He loves mysteries, making cryptoquotes and Sudoko puzzles for us to solve, playing with the farm animals, writing stories, and playing Minecraft with his friends and younger brother. He makes breakfast for us all every morning and enjoys creating amazing recipes completely from his imagination (seriously delicious, he’s never had a flop yet!); he wants to be a chef when he grows up.
His ATEC score is now close to zero. Between that and the fact that he no longer qualifies for a diagnosis of autism via DSM-5 diagnostic criteria, you could say that his is a story of “autism recovery”. However, the lessons that he taught us continue to guide our healing journey today. I will always be thankful for his health; it is something that I will never, ever take for granted!