Something highly unusual in the world of autism happened to my son last week. He received a diagnosis of autoimmune encephalitis from a prominent and highly respected mainstream pediatric neurologist. Moreover, she stated this to be the cause of his autistic behaviors. Seven years after his devastating regression into autism, we finally have answers as well as a thoughtful treatment plan. We’ve moved out of the realm of “just autism” and into a realm where his suffering is being taken seriously.
Autoimmune encephalitis is a serious medical condition in which the immune system attacks the brain, impairing function. What makes my son’s diagnosis last week so unusual is not the fact that autoimmune encephalitis is a rare cause of autism, but that it is rarely diagnosed in this population. Similarly, it is rare for autism to ever be attributed to a medical condition by a mainstream physician. To say autism has any conclusive medical underpinning is practically heresy.
Like most families, when my son was diagnosed with autism, we were told the only proven treatment was Applied Behavioral Analysis (ABA) therapy. Of course, there was no known cause, and positively no cure. Most certainly, there was no medical treatment for autism, unless we took pleasure in throwing handfuls of cash into the wind and slathering our son in snake oil.
To disagree with this aloud in any setting other than our own bedroom was tantamount to throwing ourselves to hungry wolves. Being naive and determined to improve my son’s quality of life, I threw myself to the wolves again and again and again. I knew in my heart that something was medically wrong with my son, so I sought medical help in all the predictable places. First from the gastroenterologist, who proclaimed my son’s constant diarrhea to be no problem at all. “Toddler diarrhea” he called it. No need to worry mom, but please, for the love of all things holy, let that child eat gluten and drink milk lest he feel left out at birthday parties. I informed him that since my son did nothing but bang his head continuously on days he drank milk that the likelihood of him being invited to any birthday party at all while consuming dairy was slim to none. “Introduce it again in three months,” he said.
And so it went. Pediatrician for constant reflux, ear infections, respiratory infections, incessant crying, lack of sleep, hypotonia, twitching, sensitivity to light and to touch. Allergist for testing and confirmation of a dozen IgE mediated food allergies. Geneticist, developmental pediatrician, immunologist, local neurologist. One doctor after another, one medical diagnosis after another. There was an explanation for all of these conditions, but the explanation was not that autism was medical. This was a clear case of really bad luck. Or hysteria and anxiety on my part. Or both. Missing from the equation entirely was any professional curiosity as to how, in one generation, autism went from exceptionally rare to frighteningly prevalent.
Friends and family were no better after my son’s autism diagnosis. Precious few said what I desperately needed to hear. Their hearts knew this was very bad, but their minds had heard that autism was just “neurodiversity.” We needed to accept this. Perhaps my son would wind up like Jerry Seinfeld, who once claimed he was on the autism spectrum. Given the conflicting messages coming from their hearts versus their brains, their mouths had little to offer. They certainly didn’t say that they were deeply and sincerely sorry. That they understood what an incredibly crushing blow this was. That they acknowledged the intense, all-encompassing pain in our eyes. That they recognized our souls had not a second of peace since our world started unraveling.
In fairness, none of them were to blame. Americans cannot know what a tremendous burden autism is, because recognition of this reality is strictly taboo. We have the awareness camp and the acceptance camp, but the “this totally sucks” camp does not exist in the open.
The truth that autism is medical has yet to make its way into the consciousness of most people, so if one wishes to retain their status as a good parent, complaining about autism is strictly forbidden.
What makes autism so different from other medical afflictions is not only the failure of it to be properly labeled as a medical condition, but the fact that, even within the autism community, the acceptance dogma is so thick and so oppressive that few honest conversations take place, even with other autism parents.
Somehow, it dawns on almost no one that perhaps autism has a medical basis, even as one third of our children experience seizures, a blatant sign of a medical problem. With this truth ignored and swept under the rug, the reality of what it is like to have autism and to parent a child with autism is airbrushed and transformed into a positive fantasy that suits just about everyone but those lacking validation and support.
For seven years, I have been parenting a child with autoimmune encephalitis, under the pseudonym autism. AE is considered life-threatening, killing 6% of those afflicted. For seven years, we’ve dealt with days consumed with endless crying, for months at a time. With intense emotional and psychological pain that no human could fix because this was “just autism.” With intrusive repetitive thoughts that controlled every waking moment, making us prisoners in our own home and my son a prisoner in his own brain. With crushing anxiety that prevented anyone from coming to our house, and anyone from leaving. With diarrhea. Followed by constipation. With food allergies. With insomnia. With refusal to eat. With an immunodeficiency. With month after month of traumatizing IVs to treat it. With five straight years where nobody slept through the night. With rages. With holes in the drywall and rooms torn apart over transgressions as small as grandma purchasing a blue pool noodle instead of green.
With tears. With so many tears.
For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.
For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at importance events, and family members a reason to question our sanity and criticize our parenting skills.
My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was “fine, thanks.” We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.
Of course, this could not be further from the truth. My husband and I love our son as much as any humans could ever love another. He is beautiful, clever, and sweet. But he also has also suffered so very, very much.
All would conclude that autoimmune encephalitis striking our toddler and continuing on undiagnosed for seven years is a horrible tragedy. Similarly, we are all in agreement that a childhood diagnosis of cystic fibrosis, juvenile diabetes, or leukemia is devastating. It is perfectly acceptable to not accept these diagnoses. Everyone understands that despising a medical affliction while loving the individual suffering from it is not at all mutually exclusive. We know that having disdain for a disease in no way translates to lack of acceptance of the individual. The idea of “just accepting” diabetes or cystic fibrosis instead of treating them is asinine.
What happened to us last week was monumental. Finally, because we have confirmation that all along our son has had autoimmune encephalitis masquerading as “just autism,” we are allowed to feel pain and grief and talk about how much we hate that this happened to our son, without judgment or disapproval. We are allowed to provide him medical treatment designed to remove the obstacles he faces without being delegated to the status of pariahs in our community. We don’t have to pretend to accept or celebrate a thing. It’s a given that my son’s talents and personality are in no way intertwined with autoimmune encephalitis and that autoimmune encephalitis does not define him.
Without a doubt, the world will learn in the coming years that autism is just a name for variety of terrible medical tragedies that strike our children. Mainstream doctors will begin treating children with symptoms of autism for autoimmune encephalitis, Lyme disease, mitochondrial disease, Celiac disease, vaccine injury, food intolerances, methylation defects, heavy metal poisoning. When this time comes, there will be no celebration of autism caused by mitochondrial disease. There will be no walks, no t-shirts, and no bumper stickers glorifying Lyme disease nor lead poisoning. Nobody will chastise a mother for failing to accept this as her child’s lot in life.
Until then, as your life intersects with families of children with autism, know that when they say they’re doing well they are likely just barely surviving. Acknowledge that you recognize how challenging this must be for them. Give them a hug. Tell them they’re doing a fantastic job and you think they’re warriors. Tell them you would love for their child to come over and play with yours, that you’ll hide the blue Popsicles, and it’s alright if their child flaps his arms or repeats the same phrase a million times. You’ll talk to your kids about loving and accepting our kids exactly as they are today, medical conditions and all. Show the same understanding you would for a friend whose child was suffering from any other medical illness. Demonstrate you understand the weight of autism.
And autism families, be gentle with yourselves. Be steadfast in your knowledge that you know your child better than anyone. Be confident in your intuition when your heart whispers this is not “just autism.” Dismiss the acceptance dogma and the notion that giving a voice to the pain and searching for medical treatment for autism is incongruent with complete love and acceptance of your child. Be proud of yourself and proud of your child. Hold your head high. Know that as we each throw our one little starfish back into the ocean, we are changing how autism is perceived and treated, and we are blazing a more manageable trail for the children and families that will come after us.