Demeter's Phase: Fixing Your Child May Do More Harm than Winter
Fourth installment in a series on processing an autism diagnosis
Recently, I was rereading the Greek mythological tale of Demeter and her daughter Persephone. The story of their rupture and reunification offered me reflections on my relationship with Harrison and how much I mishandled his autism diagnosis, as if it were separate from him.
As the myth goes, Persephone is picking flowers near a lake when suddenly the earth splits open and Hades, in his chariot, emerges and kidnaps her, ferrying her down to the underworld, where she becomes his queen. Sensing her daughter was in danger, Persephone’s mother, Demeter, calls out to her, but there’s no response. Raging across the Earth in her search of her daughter, the goddess brings the first winter to mankind as punishment for Persephone’s disappearance. Zeus, realizing that the world will end if Demeter doesn’t get her daughter back, eventually returns Persephone to her mother. But because Persephone mistakenly ate four pomegranate seeds while she was in the underworld, she must return to Hades for a third of every year, forever.
The naturopath had a well appointed office on University Ave in Palo Alto, California, and few places could geographically announce themselves as more trustworthy. Proximity to Stanford University and Hospital, and an oak-lined quintessential wealthy suburb. Doctor Walker felt modern and kind in a way that buoyed my spirits, after years of shoulder shrugging with elderly male general practitioners, who just replied “he’s fine.” Instead of a cold room with bad lighting and a single black chair, her office looked like something out of a Pottery Barn catalog, lots of taupe furniture and soft lines, and one navy blue beanbag chair for her young clients. These comforts and her ability to listen to my concerns, laced an open-hearted narrative with a dangerous message.
She handed me a pamphlet entitled DAN (Defeat Autism Now). It had before and after testimony of a mother whose son (also pictured) went from non-speaking and “tantruming” to mainstreamed and “thoughtful” in less than a year. Their protocol: chelation, Hyperbiotic Oxygen therapy, a gluten free, caesin free diet, and weekly vitamin infusions. These methods sounded strange and extreme, but I kept staring at the after picture of the boy’s and mother’s relaxed smiles with full eye-contact.
By the time I left Dr. Walker’s office, I had signed up for a monthly subscription of her specialized chelation formula that I was to put into Harrison’s daily GF/CF Mango ago-go Jamba Juice, loads of vitamins and stool labs to test Harrison’s heavy metals—none of which was covered by insurance. The fact that she sent me with the chelation formula before receiving the labs back, should have been a warning sign. But she said the hypnotic words so confidently, “Your nightmare is over, by September, he’ll be mainstreamed for kindergarten.”
Harrison did have prolonged gut issues from ages 1-3, and I knew that I hadn’t taken precautions around our house remodel: His dad was still sanding his room in our 1920s house when I was very pregnant. Our gardener used Roundup. I had five mercury fillings while I was breastfeeding. Doctor Walker’s story and brochures perfectly aligned with my own fear and guilt. I was locked in.
In six months, I had subjected Harrison to a few of these ostensible remedies, had emptied my savings and $10,000 of my 401K all in an effort to do battle with autism. This language (defeat, kill, fight, overcome, and more) kept me distant from my son. I was equating love with annihilation. Clearly, while we adored each other, I wasn’t creating a safe and accepting environment for Harrison. And, to make matters worse, as zero “improvements” in behavior occurred in Harrison, I was spiraling.
I had started to stock bottles of Tanqueray gin, six packs of tonic water, and a bag of limes in my kitchen. I had many friends who drank regularly, and it didn’t logically seem like a problem. I was on autopilot and didn’t connect my evening drinking to my emotional state. One day Harrison’s teacher wrote in his communication folder, “Good news, Harrison made a novel request. He asked for tonic water.” I had let him drink the rest of my can a few nights before. But my shame around drinking nightly washed over me—and somehow I had outed myself.
A few weeks later it was time for Harrison’s IEP.
We had been through a bad one the year before at another school where the head of special ed responded to my request for more speech therapy, “Do you really feel comfortable asking for such pricey resources when those funds will be diverted from programs for kids who are college bound?”
This time I was going to handle it. Not get enraged. No yelling. He was still adjusting to the school and everything seemed to be okay.
The head behaviorist, who led the meeting, was new to the school. This was her first job out of college, and she moved with stilted confidence, and it appeared a black blazer that she bought for the occasion. She sat at the head of the table with big binders with color coded post-it notes.
I was used to all of the deficit language and graphs of maladaptive behavior at this point. One graph that tracked elopement was labeled “chasing birds,” which made me laugh inside. They weren’t interested in taking away services this time, so that was a relief. I was even used to the fucked up question they asked all parents, “What are your goals for your son?” The first few years, I tried to fill this out with a reading goal or a goal for things that I longed for like a “I love you.” But I stopped those, when I realized that they were all thinly veiled interrogations about my expectations. Are they realistic? Do you know what you are dealing with? They want to know are you like Dr. Walker and mythologizing a cure? I wasn’t trafficking in that kind of emotional bait with them.
“I want him to feel happy when he’s here at school. That’s my goal.”
She wasn’t sure if she had a way to measure that. At the end of the meeting, she became more solemn.
“I have one more thing. And this is so difficult for me to share.”
She welled up. I glanced at her binder and in upside down print, I saw the sentence.
Explain to parents Harrison qualifies as “mentally retarded.”
I stared at her without blinking.
She sniffled through her words: “I did all of the tests, and the results demonstrate that he is mentally retarded as well as autistic.”
More tears. I was fine with the bulging silence.
“Are you done?” I asked, just staring.
I let the words hang there. I was not going to give her a conversation, or a good cry.
I signed her paperwork, picked up Harrison and went home. As I was helping him put on his pajamas, I saw the gin on the counter, and an inner knowing stepped forward.
I have a choice: love him fully as he is without trying to fix his behaviors for my own comfort or continue to go down this bottomless what if, why me thinking, drink and be sad.
While there is much more knowledge, acceptance and leadership by autistic people now, I bet that these feelings and directives of “fixing” or “eradicating” autism are still out there in doctor’s offices and social media. If you are struggling, please find support. Be proactive in your own journey of processing a diagnosis.
Next week, I’ll send out a post with upcoming retreats, breathwork, and Gateless writing. Any questions, feel free to email me kimberlycescamilla@gmail.com or find me on FB or IG.