09/20/2023
No, my son does not have “autism” and it’s likely your child doesn’t either.
I still recall the moment that the psychologist told my husband and I that our 2.5 year old son had “autism”. Sure, he had suddenly started with some odd behaviours that had led us to seek an
appointment in the first place and subsequent testing. But we expected a different explanation. Afterall, I had returned to work after maternity leave, then we moved house after a stressful renovation and sale of another property, and more recently I had given birth to my baby girl. There was a lot of adjustment needed for such a young man and I thought surely the disruption in our day-to-day life was an explanation for his changes. But here was this psychologist sitting across from me telling me that my son
had “autism”. “How could that be?” I asked. She proceeded to question me about our family history and whether anyone else suffered with the same condition, along with a string of other questions that I can no longer recall (I tend to block painful memories). I answered “no” to all of her questions and her
ultimate response was “well, sometimes there is no explanation; it can just happen”. No explanation? No objective evidence? “It” just happens? What? There is always an explanation, particularly in the
scientific world where this doctor operates. But moving on I presented my next question, “What does this mean?” In response I was told that my boy would not follow the typical developmental trajectory like other children and would likely struggle in a range of areas. So of course, I next asked, “How do we fix it?”. I do remember vividly the bewildered look on her face and her response, “You can’t fix it. “Autism” is a life-long condition. He will always have it.” Inside I was screaming and felt in that moment
my heart break. I will never forget it, because that moment changed me forever. Unwilling to ever accept “what is” I asked how we help him and she told me I could help my son with early intervention. I
received another bewildered look when I asked, “What the hell is early intervention”.
I left the psychologist’s office feeling numb and of course I cried. I was in disbelief. My son was “broken”? Not “normal”? WTF? This was a kid who achieved all of his milestones early. He could lift his
head from when he was born, was walking at 10 months, running by 11 months. He showed signs of being incredibly bright, very tuned in and responsive not long after birth. He said his first word at seven months. Everyone who met him was impressed by this little man and most called him “advanced”. But then the light started to fade when my son was around 2. I would call his name and he wouldn’t respond; I thought he was too busy playing. I would see him staring into space seemingly lost in his own
thoughts; I thought how clever it was that such a young boy could have such deep thoughts. When he started lining up toys in beautiful patterns and shapes across the room, I thought it was creative. But when he started to “lose” his speech just before turning 2 I knew this was not normal human development; language should build. And then the temper tantrums began, which at first I thought was indicative of the terrible two’s, but could see they stemmed from frustration, mostly due to his lack of speech. And so this led me to seek “professional” help with the psychologist. What followed from that appointment was a barrage of paperwork from the paediatrician with referrals to various therapists and of course his own personal letter spelling out in black and white that my son had “autism level 2”. Yes, not only did we now have a label, but also a categoristaion to indicate the level of severity of his “disability” (yes, that was in another letter that came later, which told me that legally my son met the criteria to be “disabled”).
So, armed with my paperwork I threw myself into early intervention. My entire focus was now on “fixing” my child because I refused to accept that he was destined to be “broken” and there was no way I was going to see him have a life less than perfect (in whatever way he chose to define it). I was not going to let “autism” stand in the way of him having every opportunity and preventing him from leading a “normal” life. In the years that followed we worked incredibly hard. When we weren’t running from one appointment to the next, we were working together at home to support his learning. Play time was now executed with a strategic focus and a learning goal; play didn’t exist just for the pure joy of it anymore. I sought out every program I could that promised to address a challenge my son had and we participated fully. At times I pushed too hard, feeling the time pressure to get everything corrected, because already we were behind our peers. As that gap widened, I pushed even harder. In the early days I would wake of a morning and then suddenly remember our diagnosis and the fact it was real and not a dream. In that moment the tremendous sadness I felt was debilitating, completely crushing and soul destroying. The only way to fix it was to work and so I would get up and start another day of “work” with my child. And that’s how we existed for years.
In late 2017/ early 2018, just before his fourth birthday, my son caught yet another “viral thing”, as our GP labelled it, but this time it did not go away. He was prone to catching these viral illnesses all the time. He would often present with a cold, an ear infection, congestion of some kind. He had been to the hospital emergency department at one point due to cold sores and when he caught hand, foot and mouth disease, he was the worst case our doctor had ever seen (he subsequently caught hand, foot and mouth four times). But when he fell ill in 2018 he was quite literally sick for 6 months. He was pale and gaunt, almost a skeleton, with dark bags under his eyes. I remember sitting by his bedside at night sobbing, telling God if I had to accept his “autism” diagnosis then so be it, but begging him to make my son well again. At that point I started a new crusade.
For my son to be so ill I figured there must be something wrong with his immune system. His reactions to things were always over the top, more severe than was the case with his sister, 2 years younger. He just didn’t respond the same way as she did, with more frequent and more intense symptoms, which lasted longer than the norm. Doctors told me it was normal for children to be sick and this was a good thing because it would build his immunity. I got to the point that I felt if I heard the phrase “it’s just a viral thing” one more time I might throw something. Already I had watched my son fade mentally, but now I was watching him fade physically as well and being told this was to be expected and acceptable. I began my research, trying desperately to find an expert that could help. At that time my focus was on
finding a specialist in immune disorders. I never imagined a link between my son’s immune system and his “ASD”, but there it was, spelt out by Dr Michael Goldberg. I read his book, along with a handful of others by authors who were singing the same tune as Dr Goldberg. Finally, I felt a sense of hope. Was it possible that my son does not have “autism” but rather a real medical condition affecting his brain function? Could this be an explanation? Surely not. Afterall, this was not what the majority of the medical profession was saying in my experience. It seemed to make sense, to be so logical, that surely others couldn’t miss it? Regardless, it was worth exploring. I reached out to Dr Goldberg and my family flew to Los Angeles
PART 1of2
