David Gerschlowitz is a handsome, green-eyed boy with floppy brown hair. In his hoodie and sneakers, he could be a typical teenager on his way to Gold Reef City in Joburg during school holidays. But David, 17, tells us he is going on a roller coaster without speaking, and avoiding eye contact. He hums quietly, selecting the word on his iPad, then retreats with his aide to the thrills of the theme park.
David has autism, and he is not likely to hold conversations or do many other things a typical teenager would. He does, however, go to school, and he runs a profitable mobile deli. He will make butternut soup and sandwiches later in the day, by himself.
“And he has teenage tantrums,” says his mother, Ilana Gerschlowitz, with humour that belies what it took for David to function at what is a high level, considering the severity of his autism. Ilana went to the ends of the earth for nearly two decades to find solutions to the many aspects of David’s autism.
Her memoir, Saving My Sons: A journey with autism, with writer Marion Scher, tells the heart-breaking story of how Ilana and her husband Martin looked for answers that disregarded popular medical and social opinion — that they should write their son off as an invalid.
A lawyer by profession, Ilana says she got stuck into research immediately after David was diagnosed as a baby, in 2003. “I was not prepared to give up on my son. To sit back and accept the doctor who diagnosed him saying ‘goodbye, and good luck’. I was not willing to accept that my little baby who looked so perfect would never go to school, or be a functioning member of society.”
I was not willing to accept that my little baby who looked so perfect would never go to school, or be a functioning member of society
In the next few years Ilana assembled an army to fight autism. Her search started in the US, with an immunologist, a specialist paediatrician and a neurologist. Martin attended conferences internationally to gather information. Reams of research later, Ilana discovered there were biomedical strategies to treat autism. “Not to cure it, but recovery from the symptoms,” she says.
The medical journey started with sending blood, mucus and stool samples to the US and Europe and travelling with David to investigate therapies for the symptoms common in autistic children. These range from inflammation in the brain to painful gastric disorders, absent social skills, erratic emotional behaviour and a lack of verbal ability.
She says the most important information was the gut-brain connection, which today is recognised as common among a wide spectrum of illnesses, from gastrointestinal conditions to anxiety and depression. For David, it meant that his severe pain and nutrient deficiencies could be addressed.
“That was the first key in order for a child to progress. A child whose gut is settled, and is eating and sleeping well, is a child who can learn,” says Ilana.
She then discovered Applied Behavioural Analysis (ABA), one-on-one therapy that teaches children with autism basic skills, using a system of rewards and consequences. Accepted as the standard for autism, the therapy is funded by medical aid in the US.
Another therapy, Prompt, helps non-verbal children and adults to speak using a “tactile-kinesthetic approach”, or touch cues, on the jaw, tongue and lips. A therapist manually guides a patient to learn sounds and words.
In 2009, excited to share her newfound knowledge, Ilana hosted the landmark Challenging Children Conference in Johannesburg, presenting what were then the latest treatments and developments in autism. Some of the ideas were scoffed at, but David’s own development progressed as testament to the research.
It was not an easy road. In the book, she details the head-banging, screaming and erratic moods, multiple fevers and sleepless nights that made her wish her own son dead rather than see him and the family continue to suffer.
“What we went through then is beyond description. It got to the point where I even wished that David would die. To witness your child so unhappy and so angry and dysfunctional for so long got to me and I’d tell Martin that it would be better if our son died. I saw no point to his life apart from our torture.”
But David was slowly functioning as well as he could, with daily therapy from a team of psychologists who were trained in the ABA techniques. Ten years later, the couple’s youngest son, Aaron, then 18 months old, was also diagnosed with autism.
Now, the family was prepared. Aaron’s recovery from autism is documented in the book. He is currently in a mainstream school and shows no signs of the condition. Their second son, Eli, is unaffected.
Meanwhile, another roadblock came when Ilana searched for a school for David. The family considered emigrating. Not wanting to leave SA, Ilana and Martin decided to start their own school. The Star Academy in Waverley, Johannesburg, practises ABA in conjunction with CARD, the Center for Autism and Related Disorders, one of the largest autism treatment organisations in the world. There are now eight branches across SA, including the outreach programme the Yellow Canaries of Tembisa, and four schools that they service in Africa.
The name comes from the canary used in a coal mining to warn miners of a toxic environment; the bird would die before the area became hazardous to humans. Autistic children are often called the “yellow canaries” of society.
Autism is a pre-genetic vulnerability, and the severity depends on environmental insults, as we call them
Ilana says children with ADHD (attention deficit hyperactivity disorders) and learning disabilities fall in the wide spectrum between severe autism and unaffected children. She explains this using the analogy of a car accident.
“When there’s a collision, the injuries sustained are different. For instance, in this accident, my son was in the driver’s seat and faced the direct impact with severe injuries, or severe autism. A child with ADHD was in the same car but sitting in the back seat. He would possibly break an arm and need a plaster cast. Another child would have a bruise and was fine.”
What is the accident in this analogy?
“Autism is a pre-genetic vulnerability, and the severity depends on environmental insults, as we call them.”
Environmental insults could be toxicity in food, water or the air. Ilana says triggers can come from certain medication, vaccines and overuse of antibiotics (which ruin gut health) depending on the child’s genetic predisposition.
Don’t get her wrong, she is not an anti-vaxxer. “However, if a child is predisposed to autism, the contents of vaccines should be checked. Weigh the possible risks and side-effects for each individual child and make an informed and safe decision.
“Similarly, antibiotics can destroy the gut flora or microbiome, and a dysregulated gut flora contributing to the symptoms of autism is well established. Sometimes it’s not possible to avoid an antibiotic and parents must once again make an informed decision.
“When we needed antibiotics for our younger son, Aaron, we opted for an intravenous antibiotic in order to bypass the gut. We wanted to protect him, because he was more vulnerable given his genetic disposition.”
Autism is a spectrum disorder. There is a very wide range, from a child who can’t speak at all to a child who can speak but is struggling socially
She recently bridged another gap, with Catch Up Kids, a programme that helps children overcome learning challenges. “Autism is a spectrum disorder. There is a very wide range, from a child who can’t speak at all to a child who can speak but is struggling socially and has difficulty in communication. Then you have ADHD and learning difficulties.
“If there are learning challenges, what are the treatments? Very often psychiatric medication, like Ritalin, is prescribed as a first line of treatment. Are we looking at the underlying causes? Could there be nutritional issues, food allergies, low cholesterol, which contribute to inattention? Vitamin D3 and B vitamins, which are needed to sustain attention, could be missing. We need to do a full blood count, including liver function and thyroid function, a whole body investigation before trying therapies such as cognitive behavioural therapy, which retrain the brain. Our schools need to be more willing to help learners with symptoms, before treatment. Psychiatric medication has its place, but it’s not the first port of call.”
These interventions might seem out of reach for those without financial means, but Ilana says the Tembisa schools have proved that it is possible to give children with autism a better quality of life.
“The Tembisa moms can’t afford the probiotics their kids need every day for the gut health, so they alternate days. They can’t feed their children at the best of times, but with what they have, they use a rotational diet, including omegas from tinned fish. It takes a lot to recover a child, it takes a long time, but we can improve lives.”
Ilana says having her husband and the medical teams and instructors at the school in her corner helped her to get to this point.
“My message to parents is to work together with your partner to fight autism, ADHD, learning difficulties. Those are the true enemies. Don’t fight each other. To fight and beat autism requires courage, bravery and determination, but there’s so much hope. Rescuing Aaron gave me hope. We can fight for quality of life for children with challenges.”