The mechanism of autism is unknown, and that’s ok. Research takes time, especially when you’re talking about complex neurological disorders. We- the people who have to manage autism behaviorally before it can either be prevented or effectively treated- find meaning in our role in making the lives of children better before we can make their brains better, and that’s ok.
But there is something that is not ok, and I am angry. This morning I did yet another intake meeting for an autistic child whose parents had been put through the wringer. They went to an established clinic in a fancy building for a better understanding of why their child wasn’t speaking, and they left with a big, steaming heap of BS, including but not limited to:
• Heavy metal testing
• A full food-allergy screening
• Recommendations for genetic testing
• Recommendations for CT scans & MRIs
• A shopping list of supplements, including FRIGGIN LITHIUM
• A prescription anti-fungal
• A prescription anti-psychotic
• A recommendation for Hyperbaric Oxygen Therapy
• Stool and urine testing
• Recommendations for a Gluten Free, Casein Free diet
The psychiatrist’s recommendations for therapy were pretty much anything that she could get away with legally and possible charge for. Oh, and somewhere on the side- they should check a website for an ABA program.
And now- some information about the child whose parents were just wrung dry- He’s 3.5 now. He’s been on anti-psychotic drugs for the past six months. He’s verbal, social, can sequence numbers from one to one hundred, can read, write, and spell words from memory. You know, simple words like e-l-e-p-h-a-n-t and p-o-m-e-g-r-a-n-a-t-e?
He has no behaviors of self injury, does not tantrum, no obsessions, and very little stimming- which is easily redirected. If this child were to be assessed by someone who knew what they were talking about and didn’t pass out antipsychotics like candy- he would probably be diagnosed with PDD-NOS, maybe mild autism. But this nice lady- she diagnosed him with moderate autism, ADHD, food allergies, heavy metal toxicity, a fungal infection, and vitamin deficiencies. Wow.
Now, I’ve seen a lot of shoddy autism services in the three years I’ve been working and the five years since my son was diagnosed with autism. I’ve seen centers that copy-pasted names onto other children’s assessments and charged parents thousands of dirhams for 16 pages of ctrl-v.
(Child has severe speech deficit, as he cannot/does not use his, her, and other gender-appropriate language. Yusuf- age 10 months.)
Because I work for a center, I see more than just my own son’s assessment- unlike other parents, who will probably only ever see their own child’s. I have seen assessments from many, many centers- and I know which ones actually provide accurate information about a child’s development and which ones are giving you a binder of fluff. But junk assessments are practically nothing compared to what the lady above has done. Because she has done it over, and over, and over again.
She’s been doing it for at least as long as Khalid has had autism- because we visited her clinic when we were first searching for answers, and HF and I smelled a rat then and never came back. But then, HF and I are both educated, highly-literate people who can- and do- unleash the full power of Google on our important decisions. Many parents don’t know that they’re allowed an opinion, multiple treatments, and the tools to research the hell out of a something before touching it with a ten foot pole.
Every child she sees gets practically the same report. They certainly all get the same recommendations. I’ve never seen her administer a CARS, GARS, ABLLS, VB MAPP, or the Vineland Adaptive Behavior Index. She assigns children an average score without showing their scores for the subdomains- which is like writing the answer to an algebra question without showing your work. No matter how old you are, how many words you know, or how mild your autism is- you’re all hyperactive, moderately autistic, and possibly bipolar little snots, so have some happy pills. Ok, bye!
I met a child who had been under her “treatment” for four years before his parents finally figured it out- that she had wasted four years of his life- drugging a six year old until he was a ten year old- and “treating” him with an unstructured, undocumented “program” of flashcards, scribbling in a binder, and sending him home to come back next week, thanks.
Am I ranting. Yes, I suppose I am.
Have you ever wondered how much money Candy Crush makes? At the moment, it’s $956,114.
That’s nine hundred fifty six thousand, one hundred and fourteen dollars.
Not a year, not a month- a day.
So $956,114 –a day- is going back into one company. I have to ask- why can’t they make Candy Crush for Syria? Or Candy Crush for Autism? Or Candy Crush for Cancer Research?
I know that Syria, autism, and cancer aren’t Candy Crush’s fault, but can you imagine if the people who made shiny, interesting, and successful things actually did so to the benefit of humanity? And considering the state of humanity at the present- autism services included- can you imagine how much it hurts the world when people act for their own financial gain? I mean really- if your company made $956,114-a day- would you not feel even just a teeny bit morally obliged to do something other than make yourself richer- like I dunno… cure cancer? End world hunger maybe?
My least favorite psychiatrist and Candy Crush have something in common- and I don’t know what to call it yet, but it’s a combination of profiteering and gross negligence. It’s what happens when people think about themselves first. It’s what happens when you’re living for this world alone- and your perspective on “success” doesn’t look past your own mortal lifespan.