This blog has become somewhat of a difficult thing for me to write. Where I usually enjoy writing and storytelling, Noemie's story has become a beyond-words, or a words-can't-do-justice situation. Quite frankly, over the years I tend to sugar-coat these journals, and these days I don't have much energy for that.

Noemie's medical situation appears stable. There's nothing really else to say that wouldn't require its own journal entry, which is not in my capacity right now. She still needs to have endoscopic biopsies and an endoscopic ultrasound done at some point (it was supposed to be done last May), but the rest of this journal entry will describe why that's not happening.

Noemie had a comprehensive neuropsychology and cognitive evaluation in October. It was done rather urgently, skipping all the wait lists thanks to a local psychologist who squeezed her in because Noemie is profoundly affected by anxiety and refusal of medical care.

After the October evaluation, Noemie was diagnosed with Autism, re-diagnosed with Anxiety (originally noted in 2018 alongside the ARFID diagnosis), and is incredibly intelligent (90-98th percentiles for many cognitive functions!!!). None of these three things is a shock to me or Dave. But I'm sad it took 8 years for someone to listen to us. I understand that the complicated and confusing medical situation has muddied the waters, but...but...

How dozens of providers can look at a baby who started refusing to be held and refusing to eat at six weeks old, even after medical diagnoses were in remission and/or treated, and not press for an autism eval sooner...I'm wordless. Imagine for a moment being a brand new mother to a tiny 8 pound brand new human, telling any professional who would pretend to listen "she screams if we try to hold her or feed her. She will only be held or fed if she's asleep." If you're a mother, imagine the heartbreak of not being able to cuddle and feed your baby. Imagine hearing "it's normal to have anxiety and worries as a new mother" or "it's just reflux, all babies have reflux". Gaslighting at its best. Now, imagine waiting 8 years for an answer and for validation. (As you can tell, the post-diagnosis honeymoon of "yay we have an answer and an explanation" has worn off and now I'm angry.)

Actually, I'm being too harsh here, so to give credit to Noemie's dozens of providers over the years, please keep reading. I've learned a lot in the last couple of months, and, besides the medical confusion, Noemie meets a stereotypical picture of super-intelligent, extroverted, female who "masks" her Autism when needed and frequently, thereby leading to delayed diagnosis. Noemie was a smiley, happy, chatty baby, so of course the refusal to be held and fed just had to be the medical stuff, right? I recently learned from an incredible book that many Autistics like Noemie don't declare themselves as Autistic (via behavior) until "social demands exceed limited capacities." Well, whaddya know...guess what public school has done? The normal stresses of public school have scrubbed off the shiny "it's just her medical conditions" veneer and we've been left with a child who has slowly been falling apart since halfway through Kindergarten. If you absolutely must know what I mean by that, if you just have to know details of what that's meant for our family, call me because if I wrote it in this blog, you wouldn't believe me or would tell me what I've heard a few times now "It'll get better...she'll grow out of it...it's normal...etc".

Here is a small part of Noemie's Autism profile, not including the standard required-for-diagnosis Autistic traits and many aspects about her that I've never discussed in this blog's entries:

• Reduced interoception: she has a reduced capacity to sense and understand what's happening inside her body, both physiological and emotional. Essentially, this is a mind-body disconnect. Pertinent examples: she frequently doesn't know when she's hungry or when it's time to use the bathroom, or that she's anxious or frustrated. Interoception.
• Alexithymia: she has a reduced capacity to describe, name, or quantify emotions and sensations, as well as relate them to her situation or environment. This is separate from interoception, but obviously they play off each other. Pertinent example: she is frequently unable to describe or name the weak and tired and cranky sensations she gets that happen at the same time as abdominal discomfort, discomfort that she also cannot describe, name, or quantify; people without alexithymia would be able to say that all of those things mean "I'm hungry". Alexithymia.
• Pathological Demand Avoidance/Pervasive Drive for Autonomy: Probably the most eye-opening and validating part of what we've learned in the last couple of months. Noemie meets criteria for a diagnosis of Pathological Demand Avoidance (or Pervasive Drive for Autonomy). If you're interested in reading more, go here to download the clinician and professional guidance from the NHS in the UK; it's a thorough document and pages 7-11 are very insightful to our situation. This PDA diagnosis is considered a subset and under the umbrella of Autism, but only in the UK. PDA recognition and research is sweeping North America however, and it's only a matter of time before it is seen "officially" on this side of the Atlantic. Thankfully there are many psychologists, researchers, providers, and professionals here in this country who are ahead of the game and are providing proper care.

About PDA: Every demand in life causes Noemie anxiety, panic, and stress. This is far beyond ordinary demands of life. Demands that cause her to anxiety or panic include ALL demands: requests from others ("it's time to get ready for school"), self-imposed demands (eating, hygiene), indirect demands (praise from others leads to internal expectations of the future), internal demands (hunger, thirst), and the craziest one of all for us but the one that was the most obvious red flag is ... "good" demands that would lead to something that benefits her or are enjoyable. Examples of good demands are: panic when we tell her that we get to go do a fun activity (this is a demand that routine be changed), she frequently refuses to use medicine that would make her feel better even if it's handed over by a nurse or doctor (this is a demand that implies that she's not in control of her body), she refuses to use numbing cream on her arm for blood draws, she refuses to use self-care techniques for anxiety taught to her by professionals, and the example that's controlled our lives for 8+ years is ... feeding, food, and eating (hunger is a demand). Noemie has been unresponsive to therapies such as multidisciplinary team therapy, peer group therapy,  Cognitive Behavioral Therapy and play therapy. She also did not respond to the 10 weeks of Incredible Years parenting coaching classes that I took last fall. (She briefly responded positively, and the stress level in our house continues to be much lower, but overall it was unsuccessful. It was actually the psychologist that ran the IY program that got us urgent help with the evaluation psychologist). All of these "unresponsive to traditional therapies and interventions" plus anxiety/panic from "good" demands are big red flags for PDA. PDAers generally don't respond well to traditional Autism interventions, so we've been guided to skip the ABA therapy that's usually recommended for Autistics. We're starting Relationship Development Intervention (RDI) therapy on February 7th.

I've written the word "refused" a lot in the above paragraph about PDA, but that is actually incorrect. People with PDA can't, not won't. It's neurobiology/neurophysiology and has something to do with a part of the brain called the Insula. That's what smart people with PhDs after their names say.

The Western medical model of care still considers Autism to be a pathology, a disability, and a disorder. That's fine, whatever. I don't really care, because right now we need this diagnosis to open up doors for care, to undo 8 years of damage-done. (I looked up "Autism" in a book's index and it said "See also: disabilities" and I blinked a few times, absorbed that connection for a moment and then moved on.) We are beginning to plant the seeds for "Autism is a superpower" for Noemie, but first we're tending to other more pressing issues:

• Her school is doing more evals and testing to make an IEP and accommodation list, with the ultimate goal of making public school do-able and sustainable, and thereby lessening stress and anxiety.
• Although never authoritarian parents, Dave and I are practicing declarative language and low-demand parenting. We also look forward to beginning RDI therapy in a few weeks. Hoping to regain some scraps of normalcy soon.
• I'm seeking out a provider who can properly medicate Noemie, and yes I mean daily, baseline Western medicine pharmaceuticals. If you have any negative judgement on this, please keep it to yourself. Her are our reasons: her brain won't let her take anxiety gummies prescribed by a Naturopath, or practice regular self-care for anxiety management/prevention, or practice anxiety/panic strategies in the moment of panic, and because of the aforementioned alexithymia and interoception and PDA struggles, and since anxiety/depression increases as Autistics age, as they try to navigate a non-Autistic world. We need to start now.

Final thoughts:

• For now I'm referring to Noemie as Autistic, not as a kid with Autism. I am erring on that language, based on an interview I saw with an Autistic adult who says "when you say I have Autism, you make it sound like I have a pathology." Although, in the future, Noemie may choose what she wants.
• The book the evaluation psychologist asked me to read was jaw-dropping. Is This Autism? A Guide for Clinicians and Everyone Else made me cry happy tears. Finally, we were seen and we were heard, and we were not crazy. It is a book that ends each chapter with how research shows females present with Autism differently. Although slightly geared towards the female Autism profile, I highly recommend this book to anyone who suspects Autism in a child who is highly intelligent but struggling in school, social, extroverted, makes "okay" eye contact, has major sensory issues, health issues, behavioral issues at home but not school (or vice versa), and feeding issues.
• The Declarative Language Handbook was a ridiculously easy and quick read, and I wish I had read it 7 years ago. Every parent should read it, even if they have mainstream kiddos.
• Thanks for reading. I hope that someday the contents of this blog will be useful to someone and they will be able to find help for their struggles.

"I gave birth to [a] round peg. [She] never fit the milestones in the baby books or matched the infants and toddlers I saw in my friends' growing families. I had [a] square peg in a round hold world. Square pegs can only fit into round holes if they shave off most of who they are. It's impossible to get the shape exactly right. And it is also impossible to hide the scars." - Amanda Diekman, author of Low-Demand Parenting