Regression

by Twilah Hiari

Smash. Smash. Smash. Ima gotta smash. Tears streamed down my face as I slammed my head into the wall.
I was 38-years-old. I hadn't banged my head since preschool. What was happening to me?



Follow the journey of Twilah Hiari, an autistic woman who reached out in desperation to the medical establishment for help. Twilah reveals the devastating consequences she suffered when therapists and physicians failed to acknowledge her childhood trauma, autistic behaviors, and immunological dysfunction years before autism became a commonplace diagnosis, and decades before the medical conditions she lives with entered the medical literature. In the process Twilah discovered the system was sicker than the patient.

While her experience was a pivotal force for post-traumatic growth, Twilah's injuries also revealed several of the mechanisms that make regressive autism the reality that surrounds us today. The doctrine of purely genetic neurodiversity is no longer tenable in the face of new scientific findings.

Regression is a key narrative in ushering out erroneous ideas that autism is a condition that exists and persists independent from environmental and medical factors. It addresses the lies we create and perpetuate as individuals, professionals, and institutions in the face of things we witness but do not understand, or do not wish to accept. Ultimately, Regression is a story of perseverance and hope, reminding us that it's possible to face incredible adversity and come out a survivor.

Genres: Adult

310 pages, Paperback

Published February 10, 2019

Reviews

[La Coccinelle · Rating 5 out of 5]

And the other thing is, there’s a sweet spot—a degree of autism where the balance of the condition is more helpful than hurtful. That’s what I had before 2014, and that’s what I want back. I love my hyperfocus. I love my analytical thought processes. But I hate getting disoriented and confused. I hate my inability to tolerate sound. I hate becoming completely nonverbal. There’s a difference between a congenital brain difference and an iatrogenic injury. I didn’t consent to this state. No one told me this could happen.

This is an absolutely fascinating memoir recounting one autistic woman's journey through a regression induced by the very people and practices that were supposed to make her well. I've been following Twilah Hiari's blog for a few months after finding one of her posts speaking out against toxic neurodiversity. Now, before you dismiss everything I say next, note that what she's talking about is the modern movement to normalize potentially harmful aspects of neurological, neuro-immunological, and psychiatric disorders... not calling for the destruction of all autistic people or people with disabilities in general (which is an accusation that's thrown around liberally from those within the movement). Twilah herself states that she loves her autism and wouldn't want to part with it. What's important to note, however, is that many of the issues she was dealing with—that were severely affecting her life and her ability to participate in it—are often dismissed or ignored because of something called diagnostic overshadowing. Once you have a diagnosis of something, then that diagnosis supersedes any other symptoms. This is especially pernicious when it comes to psychiatric diagnoses. If you go to the ER with unstoppable diarrhea and you already have a diagnosis of anxiety disorder, the doctors might write off your bowel issues as being caused by stress... when it could be something as serious as a C. diff infection. As you can imagine, this can lead to further problems.

Twilah recounts her formative years, giving us an interesting glimpse into the mind of someone with high-functioning autism (as well as, it later turns out, a number of other co-morbid conditions). The abuse she suffered at the hands of her family is difficult enough to read about... but what will really strike the reader is the abuse doled out by the medical profession. Having dealt with mysterious health issues all my life, I'm familiar with the merry-go-round of doctors, specialists, and various other practitioners of the healing arts. I was appalled, however, at the unprofessionalism, denial, arrogance, and downright cruelty of the system that Twilah details in her book. In some ways, my navigation of the medical system mirrors Twilah's... but it's the "lite" version. I don't know if it's because I live in Canada and it's some sort of regulatory difference or what... but I almost couldn't believe the behaviour of some of the so-called professionals she saw. I'm not saying I don't believe her; rather, the behaviour and lack of professionalism is so unbelievable as to be a powerful indictment against the American for-profit medical system (or the American Midwest in general; seriously, what kind of 911 dispatcher mocks a person who calls for help because they're stuttering?):

I’d only gotten a few words out. The dispatcher interrupted me and started making fun of the way I talked. She was like, ‘Um, um, so my stepdad, um, um, like, um, like, um, um, um. Call back when you speak English, honey.’ And that was it. She hung up on me. That’s when I decided to cut my wrists.

Things really start to hit the fan in 2014 when a combination of factors coalesced to trigger a full-blown regression. Hormonal issues, pharmaceutical drugs, vaccines, and ECT (electro-convulsive therapy) combined to bring down a woman who was, in spite of a rough start to life, functioning fairly well. Despite her obvious physical symptoms, she was continually labelled as having psychiatric illness, and had to fight every step of the way to be heard by the gatekeepers of health. Very slowly, the pieces of the puzzle started to come together and Twilah learned that what had been causing her symptoms was a cluster of related physical issues, as well as damage from the very treatments that were supposed to help her get well. Along the way, she learned more about her own body, proactively taking control of her treatment and eventually finding a few good medical professionals who actually wanted to help (and not just dismiss her as a psychiatric case).

Twilah's insights on autism are fascinating. Though they may not be popular with the neurodiversity crowd, they're important to hear. Here we have an autistic woman who loves her autism (she credits her unique way of thinking with allowing her to survive the trauma of her childhood and adolescence), who also acknowledges that it's okay to seek treatment to be able to function (and be happy) in the world. She has the unique perspective of having regressed as an adult, so she was aware of her potential in a way that many autistic people aren't: she knew she wasn't limited to being non-verbal, banging her head, watching words run down the page when she tried to read, and being unable to do basic math... because those were new symptoms she hadn't had before 2014. How do we know what people with severe autism are capable of if their most limiting symptoms are dismissed as just part of their autism, unchangeable and perfectly normal? As Twilah shows the reader, we may be losing incredible potential in an ever-growing number of people. The longer we continue to insist that autism—and all the symptoms that go along with it—is a perfectly normal and desirable state of being, the longer we will remain in denial and lose out on the many gifts that these people have to offer.

This is a book that many people won't want to read because it'll challenge their paradigms. But it's an important book from an important voice. We often hear from autism advocates that nobody can speak for someone with autism except someone with autism. Well, here's someone with autism sharing her story. So let's listen and become aware of what she's telling us. We ignore voices like this at our own peril.

[Ravi Kulasekere · Rating 5 out of 5]

A book that will take you back and forth along a journey into the deepest darkest moments and the moments of hope and light in the life of an Autistic woman, who struggles with a condition that at the time has no diagnosis. The author exhibits enormous courage and perseverance that allows her to overcome the obstacles in her life and show us what to expect in the world today where autism is reaching epidemic proportions. An excellent read for anyone who wants to learn first hand what goes through the mind and life of an autistic individual and how to approach things with compassion and understanding.

[Candace Tresnak · Rating 5 out of 5]

Regression gives a raw account of what it is like to live as a minority woman with autism whose diagnosis came far later than it should have. Many people would not ascribe a book with autobiographical components as a page-turner, but Regression is. Waiting for the myriad of doctors or therapists to figure out that something deeper and different is occurring is frustrating as you sympathize with the author. More often than not the doctor or therapist has their own specialized diagnosis that blinds them to the exclusion of all others diagnoses.

It is a powerful true story and cautionary tale of blindly putting your faith into mortals and the medical establishment. Anyone who has even been a patient should read this book (which means everyone!) - and never forget that no one knows more about your health - your mind, body, and soul than you do.

[Amber Walker · Rating 5 out of 5]

As a patient with MCAS, I have been waiting for a book that delves into the mental health aspects of the disease (and other chronic conditions). Hiari’s story had me hooked from the get go, and I know that so many other patients will be able to relate to different aspects of her experiences. She blends her story with a superb grasp of medically complex topics, an honest and raw account of her struggles, and a sprinkling of humor. As a healthcare professional myself, I think all providers ought to read this and take time to reflect on the way we interact with patients with chronic/mysterious ailments. Kudos to Hiari for this incredible contribution to literature about the connections between autism spectrum disorders and other disease processes!

[S · Rating 5 out of 5]

As the parent of a child with an autism diagnosis, I am constantly looking to hear about experiences from adult autistics. I am so grateful to have read this book. Twilah Hiari's writing was immediately clear and accessible. She reveals major moments from her life--really showing the devastating real-world consequences of societal bias and medical neglect that people with disabilities face. I am recommending this book to other parents I know. I feel it is essential reading.

[Jessica Downie DuLong · Rating 5 out of 5]

The most stressful read of my life...but worth it.

Anyone who has been swallowed up by the mismanagement and abuse of the medical world will feel triggered by this book. The message has to get out there though - so read it. I’m still shaken but at the same time even more determined to not go quietly into the night. Thanks to the author for writing it.

[Jacki Prettyman · Rating 5 out of 5]

Incredible take of a journey through hell

Trish is able to recount an extremely harrowing, true story with intricate medical explanations in a way that makes sense to a lay person. To continue to navigate the medical system in spite of being failed again and again shows her strength and fortitude. To share the intimate details of that journey shows her unparalleled courage. Twilah, thanks to you and to your husband for your honesty and extremely hard work and for allowing us to glimpse the struggle, pain and consequences in your lives as a result of the American medical system.

[Autumn · Rating 5 out of 5]

I hardly ever write reviews. However, in the case of this book -I couldn't stop myself. So bear with me because I'm not good at writing them, lol! This book and her story was amazing. It breaks my heart what she went through because of the usual case of the medical system being crap. It also breaks my heart that more people haven't read this book. It was extremely well written and everyone needs to hear her story. I am so glad I found this book. I hope that she is living a wonderful life somewhere and is at as much peace as possible. Again... beautifully written!