Diagnosis Autism – Now What? by Ilana Gerschlowitz Author of Saving my Sons – A journey with Autism, Director of The Star Academy, Mother and Autism Advocate.
In 2004, the word “autism” rang through my ears and changed our lives forever when my oldest son David received what felt like a lifelong sentence of autism. Following that fateful visit with the developmental specialist when he was 22 months the message we were given was that autism has no hope, no cure. Goodbye, and good luck is how we were dismissed from the doctor’s office. Accept him, make him comfortable. Not much you can do, unfortunately. We even had family members suggest that we institutionalize our son. Refusing to give up on him, we spent hundreds of hours reading dozens of books and searching for solutions. We were determined that our baby would grow far beyond his label and we were not willing to give up on our hopes and dreams for his future. An attorney by profession I immersed myself in research looking for solutions.
The experience of having a child with autism begins with the shattering of all hope. The dreams you have for your child feel as if they have been ripped away in an instant and the challenging behaviors and therapies take over your life. In a way, this is your test of survival.
Today, there are a number of treatment options that help alleviate many of the symptoms suffered by our children diagnosed with autism. In addition, autism is a treatable and recoverable diagnosis.
Recovery from autism is not a new idea and was already proven in 1987 when Dr Ivar Lovaas who created Applied Behavior Analysis (ABA), a teaching methodology for autism, proved recovery. Lovaas took children between the ages of 3 and 4 and placed them into 7 hours a day of ABA and they had a 47 % recovery. Since then many children have recovered from autism. ABA has now been endorsed by the American Academy of Pediatrics, the US surgeon general and is covered in 50 States in the USA under medical insurance as it is considered an evidence-based solution for autism. Unfortunately, ABA has not yet received this recognition in our country.
Recovery from autism means that the child has been re-diagnosed and has lost their diagnosis of autism. Recovery means that the child has scored average to above average on their IQ and that they are in mainstream school with no facilitation. They no longer present with the criteria of an autism diagnosis.
Not every child will recover from autism and as much as early intervention sets the stage for recovery it is never too late to start the right treatments. There is no one “cure” for autism-like a magic pill a child can swallow and overnight they are miraculously cured of autism. Important to understand also is that no one individual on the autism spectrum is alike. On the one hand, we can have a child who can’t talk at all and on the other end of the spectrum, we can have a child who can have a conversation but is struggling to fit into social settings. The spectrum of autism is wide.
In 2009, I established The Star Academy (an affiliate of the US-based Center for Autism and Related Disorders – CARD) as I felt passionate about helping other parents rescue their children from this illness called ‘autism’ that traps children and keeps them from their families. At the Star Academy we change lives and we follow the ABA teaching methodology coupled with the Skills Developmental Curriculum – which is one of the world’s most holistic developmental curriculums available. The only way I can describe what we do is to describe “recreating a person”. Our team are experts in childhood development. Our mission is to provide every child with the best opportunity to realize their potential. The sky is the limit and children will only achieve as high as we set our expectations. Star Academy has become an expert unit that provides specialized and tailor-made education programs to children not only in South Africa but across our borders. Once a child has achieved pre-requisite skills for school we send our trained facilitators into the mainstream school to assist with inclusive education. Including a child in a mainstream school is a legal right. Education white paper 6 on disability which South Africa ratified years ago is very explicit in including learners with a difference irrespective of physical or intellectual impairment into the mainstream setting.
Typical learners are given an opportunity to understand and to be exposed to learners with a difference, which then sets the stage for their future career choice. When the other learners realize that there are children who struggle to do those things that come naturally to them. Being exposed to these children may result in them choosing a career as a doctor, nurse or teacher. How can we as a society expect the future generation to have empathy and understanding of difference if we do not expose our children to this difference? In addition, schools that claim to teach their children good values and morals, especially the religious schools need to set an example and include learners with a difference.
Today The Star Academy employs over 200 staff around South Africa and has Academies in Johannesburg, Pretoria, and Durban. Star has become a beacon of hope for parents in many countries in Africa. Over the last decade, I have learned how to manage and direct an organization that has an important mission to fulfill. Leadership and decision making involves making decisions in the best interests of the kids only and not being afraid to call someone out because you may upset them or hurt their feelings. I have learned to take decisions and fix them later if need be. A happy staff compliment and a team who will go to the moon and back for their kids is what is needed when servicing children with autism. Our team of ABA experts is ready to go to war for their kids. Motivating and keep our staff inspired has been top of my list. In the early years, I struggled to delegate but as the years went by I realized the important role of key players in an organization like an HR representative. Giving staff the opportunity to be heard and ensuring they feel valued and appreciated is the key to success.
I also went on to establish Catch Up Kids which provides learners with ADHD or learners falling behind in the classroom with the opportunity to catch up to their peers and remain in mainstream school without the need to attend a remedial setting.
Autism has sadly not been kind to my oldest son David who is 18 years old and profoundly autistic. He has worked very hard to learn those skills that come naturally to others. David relies mainly on his Ipad to communicate and uses only a few vocal words. Through the teaching methodology of ABA we were able to give David his best life and David works in his Deli every day where he has learned to independently make pizza, biscuits, hamburgers, and cupcakes. Although we continue to work towards David’s independence and functionality our biggest goal is for him is for him to feel well and not sick. David unfortunately has succumbed to the wounds inflicted on him by the autism diagnosis. We continue to tweak his medical treatment protocol on a daily basis to make him feel well enough to eat and function. Somedays he doesn’t feel so good and isn’t capable of doing much as we scramble to restore his health.
Our journey with autism has not been an easy one at all. I was pregnant with my second son Eli when my oldest David was diagnosed with autism. Thankfully today Eli is a 15-year-old typical teenager in a mainstream school in Grade 10. He escaped an autism diagnosis. Years later we had a third son, Aaron and at 17 months, autism struck a second time. We experienced the most unimaginable grief when we realized that autism was unfolding again before our eyes. Overwhelmed and afraid we found the courage and strength to battle autism a second time even though the first battle for David’s quality of life was ongoing. When you have watched the ‘David movie’ for 10 years and your baby boy succumbs to the same illness labeled ‘autism’ you know what horror lies ahead. Soon after Aaron too was diagnosed with autism, we dug very, very deep to save him.
It took grit, determination, courage, bravery, hard work, and an unwavering resolve to never give up no matter the odds stacked against us but we beat autism and Aaron completely recovered. This took 4 years of an intensive ABA program and many brave medical decisions to rescue him from the clutches of autism. Today Aaron is in Grade 2 and attends a mainstream school. We celebrate his victory over autism every day of our lives and never take him for granted. Aaron had lost all his words when he regressed into the unreachable world of autism and we had to work very hard to get him back. The autism journey is not an easy one. It’s a marathon, not a sprint and restoring the child’s health and functionality takes time. Although the mission to reverse autism is tricky, it is possible.
Autism is in fact a digestive disorder. It is a metabolic disorder and an auto-immune illness. Autism affects other body organs besides the brain. It is not a psychiatric disorder and once we start to unravel the underlying causes of autism which include things like food allergies, vitamin and mineral deficiencies, impaired detoxification, inflammation and so on we can reverse autism. Most parents with autism will agree that their child is a picky eater. Picky eating is indicative of bowel inflammation. Treating the gut-brain connection is also key to restoring the child’s health. A child who is eating well and sleeping through the night is a child who can learn and develop and catch up their delays. Most doctors will now agree that treating the gut to eradicate autism is key.
By treating the gut flora with probiotics and by eradicating the infiltration of bad gut bacteria and yeast we can treat leaky gut and restore the child’s functionality. Therefore, treating the gut flora in autism is one of the very successful interventions that lead to alleviating the symptoms of autism.
I call on all medical professionals in our country to open their minds to the many new evidence-based medical treatments for autism. The old archaic notion that autism has to be a lifelong disability is outdated and medical professionals recommending psychiatric medication as a first-line treatment for autism need to re-think their treatment strategy.
I wrote my book "Saving My Sons - a Journey With Autism to provide a road map and a way forward for parents whose children have been diagnosed with autism. They are now where I was so many years ago and I wanted to provide them with a road map and a way forward. I have studied the make-up of autism for 16 years. Like a predator who stalks their prey, I have followed autism. Many days I felt like giving up but being strong was the only choice I had. Today, I still spend hours upon hours delving into the molecular make-up of autism, studying the causes we now know contribute to this medical illness that strip children of the basic skills to function as a human being. Can you imagine not being able to speak? Not being able to express your wants and needs or to call ‘mommy’ when you afraid and scared or need something. This is sadly the fate of many autistic children trapped in a physical body that restricts them and holds them hostage.
Mast-cell activation of glial cells, mitochondrial dysfunction, and how to support the methylation cycle have been topics I've pondered over and researched until the wee hours of the morning. Searching for the ultimate cure that will unleash David from the stranglehold of autism that keeps him from us is constantly on my mind as I hold on to hope and faith that someway, somehow we will stumble on his cure. No day will end, no sun will set without us looking for his cure. I know it’s out there.
My message to other parents of children with autism – fight autism and don’t fight each other! There is absolutely nothing to accept about an autism diagnosis. Put on your boxing gloves and empower yourself with information! Autism means game-on not game-over! Don’t let fear and desperation overwhelm you. Focus on discovering and accessing the keys that will unlock limitless possibilities for your child. I recently started a facebook page called: “Autism: Now What?”” to support parents and to provide them with the information they need to never ever give up! (https://www.facebook.com/groups/565501314373978)
I invite you to read about my families’ journey with autism. Learn about how we created a new normal even through the deepest darkest days of our lives. The lesson learnt is that through patience, perseverance and determination we can change destiny. Instead of perceiving a challenge in life as something ‘bad’ we need to rather focus on the opportunity these challenges create for spiritual growth and learning. The ultimate goal is to turn darkness into light.
Saving my Sons- A journey with Autism is available at all book stores including: