Currently, three of my four children are diagnosed with autism spectrum disorders. Every time a got an official ASD diagnosis was not easy, despite not really being a surprise. I noticed early signs of autism in my toddlers and even when they were babies.
The sad part of this story is that despite Dolev being quite clearly autistic, I was convinced to ignore it for a while.
Even sadder, when basically the same thing happened with Nevo, my third child. Being verbal, he was only diagnosed at three and a half.
On the other hand, with Dov, I didn’t let the signs pass me by on. He’s my fourth child, and currently a year and a half old.
But I’ll write about Nevo and Dov in other posts. This post is for first-timers that have just started parenting a child with autism.
Noticing the early signs of autism in babies and toddlers
Dolev, our eldest son, was born in 2013. He was a sweet boy who wouldn’t sleep for a minute.
We were a couple of young but very tired parents. We tried many methods to improve his sleep.
Each one failed.
When Dolev was two months old, I went to an appointment with the Family Center nurse. So I asked her for advice.
In response, I received a rude answer from her: “You are a parent for the first time and just do not know what you are doing.”
We tried to explain that the situation is too difficult. Dolev falls asleep only with movement or skin-to-skin touch. That we have to recruit extra family members to hold him for a moment because as soon as someone puts him down he immediately starts crying.
“So just hold him when he cries,” she said. No red flags were raised for that nurse.
Sleeping disorders are just one possible sign of many early signs of autism in babies and toddlers
It will take us years to learn how to put him to sleep.
This sweet boy did not cry. He shrieked as if in pain every time he was laid for a moment.
This was not the only case people around us were looking for signs that deny autism. Both our parents said that both Hagai and I slept this poorly as babies.
“You were like that and you came out fine” is not a good indicator to diagnose.
Another early sign of autism in toddlers was speech delay. People later told us that we confuse the child because we speak two languages at home.
It is true that bilingual toddlers have a slightly longer silent period, but it doesn’t look the same as autism. Dolev was not producing any functional language, and he was supposed to at that stage even with a slight speech delay. But he was already reciting the ABCs in both languages, and naming shapes and farm animals.
From the age of zero, Dolev showed signs of autism that needed a more professional response. Lack of sleep, who learned to walk before crawling, and more. But for a long time the professionals and family alike missed out, convincing us not to check.
The district pediatrician who unearthed the autism
When Dolev was about two years old, he liked to line things up. Hagai was curious and searched this on Google.
Google said that this is a clear sign of autism.
At this point, despite all the past feelings I had about Dolev, I was no longer looking for early signs of autism in toddlers.
But things accumulated. At the age of two and two months we wanted answers again. We booked the “healthy visit” program with the community pediatrician. The program aims to unearth hidden difficulties in children and try to solve them with the pediatrician.
The Healthy Visit program
Our HMO “Mauhedat” has a program called “Healthy Visit“. The purpose of the program is to help parents solve problems with their children at a young age. As part of the test, a rapid development test is performed. It’s not only for early signs of autism in toddlers, but other developmental issues as well.
Dolev simply did not respond to the doctor in the meeting. She sent us to child development for a more comprehensive examination.
The developmental diagnosis through the health fund, or in certain institutes will also include the opinion of the paramedical staff, as needed. They may ask for meetings, for example, with: a speech therapist, an occupational therapist or a physical therapist.
How is a comprehensive developmental diagnosis performed?
The comprehensive developmental diagnosis includes 3 components:
- Meeting with a developmental psychologist
- Meeting with a developmental doctor or neurologist
- If necessary – meetings with the members of the paramedical staff to clarify important points in the diagnosis
Meetings with a neurologist/developmental doctor
I came to the diagnosis still thinking that all he had was a speech delay. I went in with Dolev for an appointment with the developmental doctor.
A worried look quickly took over the doctor’s face. After an hour he said that a comprehensive diagnosis would be necessary. He suspected “communication problems”. He said – and did not explain. Then he directed me to the secretary to schedule speech therapy.
I still thought it was nothing. A few meetings with a speech therapist. We will work on language acquisition, and that’s it.
Diagnostic treatment for several months with a speech therapist
Although she was charming, Dolev hardly responded to anything she did.
He sat across from her sometimes (since he usually didn’t agree to sit) and she tried with all her might to get him to give her some object, or to get him to ask for some object.
Months passed without success.
Perhaps the most important thing to take from such meetings, is tools to work with the children ourselves. If we learn the child’s unique learning style, and receive practical tools from the professionals, we can advance the child much more.
Meetings with a developmental psychologist
Here, too, none of her requests yielded results. But it marked the end of the process.
Early signs of autism in toddlers – Dolev’s results
After six months of the process, the moment of truth came – receiving results.
Two days before receiving the diagnosis, we had an appointment with the speech therapist. I asked her if she could check that everything is ready in the diagnosis. I wanted to know if I could submit an application for a suitable educational framework.
Good a kindergartens have to be booked in advance. I still thought he could go to a regular one, perhaps accompanied by an assistant.
She warned me in advance that she wouldn’t be able to give me the results. After a few minutes the clinician came back to me in tears. I immediately understood that they saw the early signs of autism in toddlers.
We hugged and I promised her that no matter what – we will be fine. I had no idea how difficult it would be to recieve the news.
It’s not entirely clear why I had to comfort other people. This was my news, but it repeated itself several times.
I was 18 weeks pregnant with Nevo at the time. My husband and I met the diagnostic team for the results.
It felt like I was sitting in front of a TV screen on silent. The child is diagnosed with autism spectrum disorder.
He was very low functioning.
Digesting the news
We left there confused, and decided to go to the restaurant instead of straight home.
We read the the papers again. There, written in black and white: functional age 9 months!
Our two-year-eight-month-old son functions as nothing more than a small baby.
We didn’t understand why everyone was busy making us deny those early signs of autism in toddlers. The situation was so difficult with Dolev since birth. And yet the brain washing worked.
So what are do we do now? Who do we contact? We felt so alone and clueless.
If you might feel: shocked, alone, scared, maybe even angry. Know that it’s okay to feel this way. You are welcome to contact us before or after diagnosis to receive support.
From grief to hope
When a baby is born, a dream is born with it. This infant is great and will do amazing things.
Then in a moment the dream disappears. Someone sits you down to explain that this perfect future is not, and probably never will be real.
After reading the diagnosis, I imagined the worst. I pictured my son as an adult, still drooling, and thrown in some institution.
If you also had gloomy thoughts about the child’s future, know that it is okay. You just received very difficult news. It will take time for you to digest the news. It takes time to understand it, and how to deal with the situation.
Our story starts there, goes even worse, then changes shape completely
In the following years we crossed continents in search for solutions for a multitude of challenges that just kept adding up. We met fascinating people and found new information that brought us new lives full of hope for the fulfillment of dreams we had already stopped daring to dream.
A few months after receiving the diagnosis, Dolev experienced a life-threatening epileptic seizure. He was diagnosed with epilepsy, resistant to drug treatment and particularly severe.
But today he is no longer seizing. An experimental medical treatment saved his life (by chance and luck).
We decided to try stem cell therapy in an attempt to help Dolev’s autism. We had no idea it also had a chance to help seizures. The treatment stopped all the convulsions.
And after several more treatments, his function level has greatly improved.
His condition improved so much that they canceled his diagnosis of intellectual developmental disability. His placement changed from a special education school for children with intellectual disability to a communication class that is integrated in a regular school.
The hope for Dolev – and the expansion of the family
When Dolev was diagnosed, I was pregnant with Nevo. Out of fear of the unknown future for Dolev, they pressured me to abort Nevo. What if he also has autism?
This is a demand I did not agree to! With Hagai’s support I continued the pregnancy.
One of the reasons why it was so important for me to continue the pregnancy was the possibility of using Nevo’s umbilical cord blood to improve communication abilities. Unfortunatly, Nevo’s dose was not going to be suitable for Dolev’s treatments. Instead, we found ourselves in Moscow for a treatment based on donated placental mesenchymal stromal cells.
Nevo was also later diagnosed with high functioning autism. At this stage we had already gained some knowledge and experience. We had more tools to nurture Nevo. Our house was already prepared and designed to take care of special needs.
[Update December 2021]
Following our successes with Dolev and Nebo, and despite some unclear genetic findings, we decided to have a fourth child. Dov was diagnosed during pregnancy with the genetic syndrome that caused Dolev to have autism and epilepsy.
The meaning of the genetic finding was still not that clear at that stage. That’s why I continued the pregnancy, and in November 2020 Dov was born. We felt that with the help of the knowledge we had gained, we would be able to deal with autism or epilepsy, if this happened to Dov as well. Unfortunately he was diagnosed with epilepsy at the age of two weeks.
Today, Dov’s epilepsy is partially controlled with medication, and shows the early signs of autism in toddlers. In about two years we will be able to try the biological treatment for him as well. The minimum age at Swiss Medica’s clinic in Belgrade is 3 years old.
[Update December 2022]
Dov has regressed very badly due to his uncontrolled epilepsy. In the past year we added more clinics to our list. We even found a place that will accept Dov’s cord blood for treatment.
Fortunately, our doctor at Sheba Medical Center managed to get approval for Dov’s cord blood infusion as compassionate care. Dov received cord blood in October 2022. He is also seizure free, so far. It even seems that recovered from epileptic encephalopathy. We haven’t taken him off AED yet, as we are being cautious.
Medical tourism facilitation services
One of our main goals in telling Dolev’s story is to make sure people have accurate information. We want parents to know there’s a chance for change. Researchers and policymakers need to put more resources into it. Physicians need to inform their patients to preserve cord blood.
Following our years of work, we have had many requests from our blog readers, and facebook followers for more than just information on stem cell therapy. Over time we created the stem cell medical tourism facilitation service.
Can autism be ruled out with the help of biological therapy?
I do not believe that any combination of biological and medicinal treatments will completely eliminate autism spectrum disorders. ASD is in the neurological pathways formed during pregnancy. The way the neurons communicate with each other cannot be completely change.
However, for a child like Nevo, who started treatments at high function, it might boost his communicative abilities significantly enough that he might no longer be defined on the autism spectrum according to the official categories of the DSM.
After several biological treatments, and with the support of paramedical rehabilitative treatments – it might be possible to consider removing the diagnosis.
In the future, it is possible that removing the diagnosis will serve our children. It’s still a long way off, and currently, I don’t see the advantage.
Take a deep breath and tell yourself every morning – anything is possible. I promise it’s true.
I hope that this article will help you to decide to push for a diagnosis. You and your child need the tools and rights that will advance him. I also hope that you will gain hope from our success stories with Dolev, Nevo and Dov.
Autism is not a curse. Do not be afraid of it. You can cope and get to good places.
Autism, developmental delay, ADHD, epilepsy, and other neurological syndromes such as cerebral palsy – are not something to sit idly by and ignore. Medical science and technological innovations allow us to change the situation in ways that were not possible before.
So don’t ignore the situation. Don’t ignore those early signs of autism in your toddlers or babies. If there are signs that indicate there is a problem, it should be addressed ASAP.
Try to overcome the fear of negative labeling and do the best for your child.
Remember, a diagnosis is just a piece of paper indicating that your child meets the definitions in some book. It’s not going to change the child. They are still your babies.
Shira Shachaf Reiner – RN, Parent Guide, mother of four
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