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The Power of Patience and Openness

A great trap of the human ego is to substitute ignorance and overconfidence for an opportunity to learn. I’ve watched people fall into this trap when I try to engage with them, and I’ve seen myself fall into the trap as well.

One afternoon I was in a crowded store. I pushed my earplugs deeper into my ears so that I could avoid confusion, and leaned forward as I strained to understand the saleswoman’s voice over both the loud music and the distortion my earplugs created.

“My wife has a hearing disability, she—” my husband started to offer an explanation of my hyperacusis and auditory processing disorder, but the saleswoman cut him off.

“Oh, I totally understand. I was a schoolteacher for years before this. I had a couple of deaf kids in my classroom,” she nodded and smiled. I stared hard at her lips in an effort to augment my understanding. Sensory overload had rendered me nonverbal.

“No, what my wife has is—” he tried again.

“Don’t worry! I totally get it!” the saleswoman exclaimed.

About a year later I went to a yoga studio. My arrival at the class was a very big deal. I hadn’t done any yoga since the brain changes I’d had in 2014 had exacerbated both my auditory and visual challenges. I thought I’d open the conversation about my limitations by referring to one of my better known diagnoses.

“Hi. This is my first time here, and I just wanted to make you aware that I have some disabilities. Some of my mannerisms might seem a bit odd. You see, I’m autistic and—“

“Oh, don’t you worry! I’ve studied autism. I completely get it. No worries about how you come off!”

I become disoriented when people interrupt me, so I stopped speaking. I’d wanted to explain that I need to rely quite a bit on visual cues, but that those could fail me too. I’d wanted to say that I might learn a bit more slowly than the rest of the students, but if I struggled it would be best to let me continue my efforts to imitate the poses in silence and by demonstration, rather than verbally coaching me. But I closed my mouth and didn’t say anything.

It can be hard to resist the temptation to believe we fully understand the experiences of another human being, simply because we have a passing familiarity with the first words they use to describe their journey through this life. But overconfidence in the breadth of our empathy can be a big obstacle to true understanding.

Someone once told me they could complete the sentences of others with near perfect accuracy. They substituted a belief in their possession of a communication superpower for authentic listening. This person then proceeded to transform most of what I said to them into something vastly different from intended meaning. I’d rarely encountered such a deep and profound misunderstanding.

Language can put us at a disadvantage. Humans have to agree to at least a working definition of words to get anything done. But it’s unwise to rely on our previous relationships of a few words when we’re trying to get to know another human being. It’s a far better idea to hear one another out.

Even when discussing non-human topics, we can miss a lot by glossing over details offered to us. You may tell me you have a painting of a black and white dog. If I become eager and cut you off, proclaiming that I too have a watercolor of a husky racing across the Arctic, I may miss the beauty of your story about the oil painting of your grandmother’s Boston Terrier. A dog that saved her life by waking her when her house caught fire.

Listen. Learn. Understand. You never know what someone might teach you.

My Top 7 Ear Protection Favorites for Sound Sensitivity

I’ve had a few folks reach out and ask me what kind of ear protection I prefer, so I thought I’d write a blog about it.

My relationship with sound is complicated. Certain high pitched sounds actually cause me pain. Any sound disrupts my concentration, but long periods of exposure to any sound, or short periods of exposure to very loud or complex sounds can be so disconcerting that I lose the ability to think and speak.

I like to preserve my ability to think, so I’ve experimented with lots of products to find the best one to help me navigate different auditory scenarios.

These are my top picks.

1. For light protection I like Etymotics brand High Fidelity Earplugs ER 20XS. They lower sound by about 20 decibels, which I find to be a perfect reduction in environments such as parks or retail environments without music. The clear, rounded stem peeks out subtly, so not a lot of attention is drawn to the ear.

2. For medium protection I like Radians Custom Molded Earplugs. They have a 26 dB noise reduction rating (NRR). The silicone plugs mold to fit your ear. Because of the custom molding, I’ve found them to be among the most comfortable plugs I’ve used. I wear them in the shower on days when I’m particularly sensitive, or when I’m traveling and need to block out the sound of a fan in a hotel bathroom that comes on automatically with the light.

3. For heavier protection, I reach for Mack’s Dreamgirl soft foam earplugs. They help block the sound of low volume music or urban traffic noise. I can’t imagine sleeping without them. They have a hefty 30 dB NRR but don’t sacrifice comfort like bulkier plugs in the same NRR range. If your ear canal is larger, you may want to opt for a different Mack’s model.

I’ve tried my share of earmuffs too and the brand I’m happiest with is 3M. Their Peltor series muffs offer comfortable protection for a range of auditory situations.

I’m no longer self-conscious about protecting my senses. I consider wearing hearing protection in public to be analogous to using a mobility aid. I can’t really get around well without it, so it isn’t really anything to be ashamed of.

4. With a NRR of 21 dB, I like the 3M Optime 95 for short duration or less demanding sensory challenges. I keep a pair on hand in my car for the times I’m stuck at a stoplight next to a kid with a booming radio or when a fire truck or ambulance races past me.

5. When the volume goes up, I reach for my 24 dB NRR muffs. Worn over the Mack’s Dreamgirl plugs, these can get me past a whistling locomotive with minimal disruption to my train of thought.

6. If you find that your town has been invaded by a motorcycle rally, then it’s time to grab a pair of 3M Peltor X5A muffs. With a noise reduction rating of 31 dB, they’re the most powerful muffs in my collection. They are a bit heavy, but are still comfortable enough to wear for a few hours at a time.

The customer service team at 3M is top-notch too. I had a less than fun encounter with the TSA staff at my local airport when I attempted to wear my yellow 24 dB muffs though security. I explained they were a medical device and the TSA screener requested I remove them and run my hands over them before returning them to my head. I complied, and my hands were swabbed for explosives. My eyes sure got wide when I saw the screen flash detected. Seconds later I was pulled aside for a private pat down. Once I demonstrated I was not in possession of anything threatening, I was allowed to board, but the incident worried me. I emailed 3M to find out what had caused the alert.

I received the following reply explaining the reason for the event.

“Our Peltor Earmuffs are manufactured in a facility with many different 3M products and we can confirm that there are not any explosives manufactured in that location. I did find some information that indicates that the TSA’s reader flags glycerin as a component in explosives.  Our earmuffs are filled with glycerin to create the comfort fit around the ears, the glycerin is non-hazardous but is a chemical building block of some explosives.  Please let me know if you have any additional questions or concerns.”

I thought 3Ms commitment to seeking out an answer to my rather unusual question about their product was pretty amazing.

7. The most awesome piece of equipment in my repertoire of anti-auditory assault tools are my Bose QuietComfort 20. If you can fit them into your budget, they’re worth every penny. I can get past screaming toddlers at Target with my Bose plugged into red noise from the White Noise Ambience by logicworks app. Even if you aren’t comfortable masking sound with sound, the earbuds bring the sounds around you down a notch if you just plug them into your phone and turn them on. In the on position, the noise cancelling is activated and the sound around you becomes dimmer.

I commend Bose on top notch customer service too. The noise cancelling button on my first pair stopped working after I’d had them for about 8 months. Getting a replacement under warranty was a rather painless process. I only had to pay shipping for my replacement.

The Bose QuietComfort earbuds are specific to Apple or android products, so make sure to get the right ones for your device.

Finding the right protection for you may be a trial and error process. I encourage you to keep trying until you find the products that are most suitable for you. Living with hyperacusis or other sound sensitivities can be very isolating, so finding the right hearing protection can be incredibly liberating. There is joy in being able to do something as simple as shop in a grocery store after finding the right protection against the music and the sounds of other shoppers.

As a caveat, I’ve spoken with some audiologists who warn against overprotecting the ears. There’s a theory among them that overprotection prompts the auditory system to try harder to detect sounds, making hyperacusis more severe in the long run. I can’t speak to the validity of that theory, but I urge you to speak to the professionals in your life and do your own research to determine the level of protection that is appropriate for your situation.

Blocking out sound keeps my confusion at bay and enhances my productivity, so it’s a choice I make. I do try to spend time without any protection, but I’m never able to focus and accomplish anything I consider worthwhile when my ears are exposed to the sounds around me.

Best wishes on your journey to finding the perfect ear protection!

Share your thoughts. What kinds of ear protection work for you, and how often do you use ear protection?

Why Are So Many Disabled People Offended by Good Advice?

Another fatalistic post about chronic illness and disability is circulating. I’ve seen different manifestations of this attitude elsewhere and I’ve always been a bit confused about the level of defensiveness behind sentiments like this. Here it is:

http://eritated.tumblr.com/post/147737743555/if-youre-about-to-open-your-mouth-and-suggest-one

I’ve been ill for a long time. When I gained weight in 2006, premenstrual dysphoric disorder (PMDD) raised it’s ugly head. I fought against the PMDD until I was cured in December of 2014 by a hysterectomy. But before I was cured, I experienced debilitating brain changes brought on by psychiatry’s misguided efforts to treat what was believed to be a run of the mill mood disorder with loads of toxic drugs and brain damaging electroconvulsive therapy. I didn’t initially choose to take psych drugs for PMDD. I was manipulated and coerced into taking them. When I started taking psych drugs around 2006, the doctors who prescribed the drugs were a lot like rapists. I was not allowed to say no. As time passed, my consent to take more drugs was more like the consent of a person who had been beaten and brainwashed. Despite these dynamics, there were times when the drugs helped–but those times were short lived. And as one drug lost effectiveness, another was always on offer.

I’m still disabled because of the changes to my brain, so I’ve spent years living life as a chronically ill and disabled person. I’m very qualified to speak on this topic. But the sentiment in this tumblr post and similar sentiments I’ve read before in disability community forums puzzle me.

Are chronically ill people so profoundly confused about the genesis of disease that we believe it is due to nothing more than bad luck, bad genes or other happenstance? Are we caught in a sort of Stockholm syndrome type relationship with Western medicine, which attempts to treat symptoms but rarely addresses underlying causes, and often hurts us in the process of offering temporary solutions? Are we so attached to our illness and disabled identities that we don’t want to consider the possibility of life as well or non-disabled people?

Those questions come to my mind as I consider why the post from eritated’s blog seems to have resonated so deeply with so many chronically ill people.

Obesity and high-fat diets have been established as conditions that promote inflammation. Dietary factors and obesity are estimated to account for over 1/3 of cancer deaths in the US.

Vegetarians and vegans are less likely to be obese, so recommending vegetarianism or veganism to a chronically ill person is a logical suggestion for the treatment of illness. Exercise likewise contributes to a reduced obesity for many people, so is also good advice. Yoga is a form of exercise, so it can contribute to lower obesity and therefore improved health. Some chronically ill people don’t consume nutritionally balanced diets, so vitamins might help a person to get nutrients that are missing from the foods they eat.

Stopping all medications may also be helpful for some people. I’m not the only person who has problems metabolizing medications. For people like me, stopping medications that offer debilitating side effects instead of healing for the original problem is a very good idea.

Sleep loss affects health in a negative way, so advice to get sleep a good amount of sleep is sensible. Preliminary evidence suggests pot can be a useful treatment for some conditions, such as epilepsy, but it too can have side effects.

Yoga, tai chi, and acupuncture have been demonstrated as effective in helping with pain management. Optimism is beneficial to physical and mental health.

That leaves us with ‘natural remedies’—a description so vague that I don’t think it can’t be addressed here, and colon cleansing, which I agree doesn’t seem to be a sensible treatment for anything—even an itchy rectum.

We’ve now established that most of the advice that eritated doesn’t want to hear is supported by evidence as beneficial. So I’m back at square one, wondering why eritated and people who celebrate such posts are so hostile towards good advice.

I think the perspective of eritated and chronically ill people like eritated is similar to the following analogy: Imagine I have a decently built small sedan, but it’s getting a little older. Parts are starting to wear out and replacing them is expensive and time consuming. I take my car to the mechanic, who explains that my car needs regular oil changes, which I haven’t been getting, and that a better quality gasoline could help prevent buildup in my engine. A new car might be able to handle any grade of gasoline, but my older model needs a little more TLC.

The problem is—I can’t afford a high grade of gasoline for my car—but instead of explaining how better gas is out of my reach, I rage against my mechanic’s sound advice and resent that he even offered it. I take my car home and curse its inability to function well without regular maintenance. Maybe I even call all of my friends and complain about how big an asshole the mechanic was for even suggesting that I follow basic engineering precepts to keep my car running. Couldn’t the mechanic have at least offered me a small tweak to get me through the next 10,000 miles?

Another mechanic with the same qualifications as the first learns of my dilemma and reaches out to me. She has a superfluid rep visit her shop a few times a month and offers me a less expensive fluid that can free me from the hassle of getting regular oil changes and buying quality fuel. She assures me her superfluid has research behind it and is safe to use. The superfluid is more accessible than regular oil changes or quality fuel. I try it once and it gets my car to rev in a way it hasn’t revved in years. But there’s a big problem. After a few months on superfluid–parts on my car start to break that generally don’t break on cars until they have 300k miles, my car only has 90k. The mechanic who sold me the superfluid assures me it’s just a coincidence. Since she’s such an awesome salesperson, and I so badly need a running car, I believe her. I want to believe her. When critics suggest the superfluid is only a temporary fix and that it will destroy my car in the long run, I respond that they are superfluid shaming and promoting broken car stigma. My critics, duly chastised, slink away.

Like cars, human bodies require certain conditions to attain optimal functioning and avoid breakdowns. Many of these conditions are difficult to attain when a person has limited financial resources, limited access to transportation and recreation, and limited access to education that can help them recognize which advice is sound and which advice is hurtful.

There are also limitations directly associated with disability. In my case, I experience profound sensitivity to sound is a barrier to environments like gyms and even some parks where a less sound-sensitive person might be able to exercise. My inability to multitask is a barrier to creating healthier meals, because cooking usually involves multitasking. But these barriers and limitations don’t equate to a good reason to bitterly reject sound advice that could improve my health. Instead they create opportunity to expand the conversation on the specific needs disabled and chronically ill people may have to have addressed before long term healing can take place.

I’ll continue to read and listen to advice with an open mind. I’m not attached to identifying as ill or disabled. I don’t believe that my health challenges are inevitable or insurmountable. I believe that environmental and lifestyle changes are absolutely the key to recovering from many, but not all, illnesses and diseases.

I understand that some diseases are not curable, and no amount of nutrition or exercise will reverse them. Likewise, some disabilities are permanent. I understand that people affected by incurable diseases or permanent disabilities probably aren’t interested in hearing about remedies that work for others. But many other chronic conditions are treatable or even reversible. Illnesses that pharmaceuticals barely keep at bay might be completely curable through nutrition, exercise, and other lifestyle changes.

If other people with health challenges choose to dismiss good advice, I can only wish them well while simultaneously knowing that pills and wishes will not sustain them in the long run. They can choose for their bodies whatever they like, but if the choices are unhealthy, they can anticipate longer periods of illness. To those who respond in defense of drugs over nutrition and exercise, I challenge them to reevaluate the long term effects of their choices in 20 or 30 years.

Why I Resigned From The Mighty

 

I was in a car, on my way to a work retreat for my new job at The Mighty, a popular mental health and disability blog site. The driver, a woman from Fresno who blogs about her life with a vascular birthmark, explained that she didn’t care for driving in Los Angeles. She turned to another woman who sat in the passenger seat, a blogger who focuses on disability issues from the perspective of a Christian and a parent of disabled children. After talk of traffic was over, they resumed their conversation about the famous bloggers who had reached out to them.

I tried to block the sound of their voices from my mind so that I could be fully engaged with the person sitting next to me. I sat in the backseat and was enjoying a nice conversation with another new co-worker who had flown from her home in New Orleans to participate in today’s activities. I’d perked up when she’d told me where she was from. Our conversation had taken off when I explained that I loved the city and that my family has some Creole ancestry.

It was a beautiful California day, and I was looking forward to the work retreat at The Mighty. The driver maneuvered though Hollywood until she found parking in a cement garage. My new friend from New Orleans got into her wheelchair, and we all ascended a ramp that ended at a glass door. I could already hear loud music, so I pushed my earplugs deeper into my ear canals. When the door opened I was blasted by the sound. I grabbed my Peltor muffs from the strap of my purse and placed them on my head. The confusion and disorientation I experience in response to exposure to loud or prolonged sound descended. I realized I was chanting, “I’m in hell. I’m in hell. I’m in hell.”

My new coworkers seemed to avoid my gaze. We navigated through hallways and corridors, and the music persisted in its relentless assault. When we entered the vast room in which the retreat was to be held, the CEO’s wife noted my earmuffs and steered me aside.

“I’m sorry about the music. We’re trying to get it turned off. You can stay over here in this quieter area,” she offered. Her look of concern seemed sincere, but I wondered how expecting me to withstand such an auditory onslaught was acceptable when it would not have been likewise okay to ask my wheelchair-using co-worker to attend the conference by ascending a flight of stairs.

The apprehensions I’d initially had about joining the team returned to my mind. I’d allowed my originally cautious disposition to be overtaken by optimism when I had accepted a position of contributing editor with The Mighty, but my hopes were about to be dashed.

My caution about working with the company was twofold. First, I’m autistic, and The Mighty remains partnered with Autism Speaks, an organization that was at the forefront of promoting parent-centered propaganda about the perceived horrors associated with autism and autistic people. Autism Speaks persisted in this spirit until its board of directors voted to change its mission statement in September of 2016. But I believe in the possibility of both personal and organizational transformation, so I pushed that concern to the back of my mind.

The second reason for my prudence rested in the ways the notion of mental illness is most often discussed on The Mighty. Hundreds of contributors to the mental illness section of the site embrace and support psychiatric drug use. I tried to look beyond that as well, especially when the editor-in-chief informed me that people were welcome to present anti-psychiatry perspectives too, as long as they were worded in a constructive manner.

Since I had agreed to edit the contributions to the chronic illness portion of the site, I thought I would be able to keep my personal views on the autism and mental health components of the site at arms length. I thought I could promote empathy and understanding for people living with chronic illnesses by promoting their stories, yet remain disengaged from the problematic elements present in the autism and mental illness categories.

I remained in the quieter area until I was told the music had been extinguished. Within minutes of walking from the quiet area into the main conference room, I realized how misplaced my optimism had been. I removed my Peltor muffs and earplugs as the newly hired Chief Revenue Officer launched into her presentation.

“If the CEO for Abilify was in the front row right now, he’d be salivating,” she declared. She had just explained her strategic plan for monetizing the site with pharmaceutical advertising. But the plan didn’t end there. The Mighty planned to give drug companies user data that would help focus the pharmaceutical manufacturer’s marketing efforts.

After I heard this, I stood and left the room again. I had some soul searching to do.

The staff at The Mighty are not greedy ogres at the exclusive beck and call of big pharma. They are real human beings who care deeply about changing perceptions about disability via the sharing of stories written primarily by disabled people and their families. They seek to promote ideas of inclusion and acceptance in the face of pervasive ‘othering’ and discrimination.

The Mighty staff wants to grow a platform that helps people find comfort in the perspectives of those who came before them, at times when they find themselves on the receiving end of a life-changing diagnosis or in the throes of undiagnosed illness. The folks at The Mighty are legitimately good people who want to change the conversation about disability. They hope to make the world a better place for those of us who are roadblocked by larger society because of our differences. They want to monetize the operation in large part so that they can be in a position to pay contributors, who they readily acknowledge are the site’s raison d’être.

But despite the merits of The Mighty staff, my caution transformed to distrust when plans for an alliance with pharmaceutical makers was revealed as a core component of creating revenue.

As soon as I returned home I submitted my resignation:

It is with a feeling of deep disappointment that I offer my resignation. I will be very direct as to why.

I was horrified to learn at the retreat that the company plans to monetize the site by pairing with pharmaceutical companies. Had I known in advance that was the chosen strategy to create revenue, I would have declined the position initially, rather than accept the resources you invested in me.

Let me offer a brief synopsis of my personal journey through healthcare. After reading it, I think you will better understand my stance:

In 2014, after I had been a patient of the mental health and psychiatric treatment communities for over 20 years, I suffered an iatrogenic brain injury. According to a neurologist, the injury was made possible by years of exposure to various psychiatric drugs, but specifically because of years of exposure to Abilify. Immediately following the injury, I lost my ability to read, write, and speak. I presented in the emergency room with symptoms similar to those seen in stroke patients. It has taken the intervening years for me to even partially recover these skills. I still cannot write legibly, I must type in order to make my written communication understood. And as you all saw at the retreat, I can still lose my speech if I am exposed to too much sound, in terms of both volume and duration. I did not experience that type of inability to speak prior to my injury. My previous autism-related challenges with spoken language had been of an entirely different character.

The injury damaged my already compromised auditory system as well. I’ve lived with Auditory Processing Disorder (APD) for my entire life, but it too went unrecognized by the mental health community, despite the fact that my inability to hear in environments with background noise was an enormous factor in many of the life stresses I sought help for. Rather than listen to my reports of these difficulties and try to uncover an underlying cause, psychiatrists threw drugs at me. My audiologist, the renowned Dr. Jack Katz, documented that my APD was profoundly exacerbated by the treatment modalities I underwent on the orders of psychiatrists.

Over the lengthy course of all of my interactions with the mental health community, my autism, like my APD, remained overlooked, and was instead characterized as bipolar disorder, borderline personality disorder, major depressive disorder, general anxiety disorder, or PTSD — it seemed like half of the DSM was thrown at me. But partly because I’m outside of the stereotypical autism demographic — white and male — my autism remained unrecognized until after my brain injury exacerbated the most problematic aspects of the condition, such as my hyperacusis, misophonia, auditory processing disorder, and dysgraphia.

After undergoing genetic testing, I learned in 2015 I have a CYP2d6 gene mutation that makes me a slow metabolizer of many medications, particularly certain categories of psych medications. A person who metabolizes a drug slowly cannot tolerate the same dosages as normal metabolizers, and is more prone to side effects. I had complained of these side effects to the mental health community for years, but my complaints were dismissed as symptoms of my ‘mental illness’. I also have a yet undiagnosed autoimmune condition that permits the allergic-type reactions I have to drugs and other things my body perceives as toxic to detrimentally affect my brain. I am trying to work with neuroimmunologists to understand the mechanisms behind these events.

Since I stopped taking all psychiatric mediations, my mood is phenomenal, despite the obstacles to tasks of daily living and problems with executive function I experience as a result of both my injury and my autism. I credit my meditation practice, the wisdom gained from my journey through the mental health system, and the hysterectomy I had to cure my premenstrual dysphoric disorder (a condition that I have observed seems to be common among autistic women), for my significantly improved mood.

I am currently on Social Security Disability, but I have never stopped trying to re-enter the workforce. I hoped this was my chance.

When I joined The Mighty, I thought I would be able to compartmentalize my views on psychiatry from the way mental health is discussed on the site. I have intentionally abstained from participating in any conversation on the topic, because I realize my perspective is at odds with the majority of the mental health perspectives presented in the forum. I thought I could peacefully co-exist with the difference of opinion. But I have to draw the line with being associated with a site that plans to actively promote psychiatric drugs and allow for data mining among registered users to this end.

I believed in my heart that I could play an important role in promoting the writings of people who live with chronic illness. I hoped I could help expand empathy and understanding. So it is with great sadness that I depart from that role. I’m not only a member of the chronic illness community because of my autoimmune and genetically mediated intolerance to drugs and other substances, I’m a member of the autistic community as well. The autistic community has been on the wrong side of medicalization and medication for far too long. I cannot in good conscience lend my voice or my skills to a platform that associates with drug companies that have caused so much destruction to a community I care very deeply about.

Sincerely,

Twilah Hiari

CEO Mike Porath graciously responded to my resignation.

Twilah, I’m sorry to hear this, and I’m sorry that the day of the retreat was a challenging one for you too, but I appreciate you giving us the context of your personal experiences in explaining your decision.

I don’t know if and how we can be helpful to you down the road, but please don’t hesitate to reach out if we can be. I’m sorry this didn’t work out, but I respect your decision and I speak for all of us when I say we truly wish you the best.

I also wish The Mighty the best. It is my deepest hope that they can help people, but it is my greatest fear that they will open doors to more psychiatric injuries.

Clarification: Dr. Katz documented that my APD was exacerbated by ECT treatments. I apologize that my original writing did not make this clear.

This post was originally published at madinamerica.com

The Pro-Choice Argument I Never Want to Hear Again

Ultrasound image of fetus in uterus.

 

Last month women marched in Washington DC; in part to maintain their legal right to decide whether people like me should exist.

I will say up front that I think abortion should remain legal in the United States. I know that when it has been made illegal elsewhere, more human beings die. I think that access to birth control should be free and unlimited, and I’m willing to put my money behind it. But sisters please gather round, because we need to have a talk. Some of the arguments I’ve heard presented on behalf of abortion rights are appalling, and you need to understand why.

I’m disabled and I love who I am. I’m an abuse and neglect survivor, and I love who I am. Despite the difficulties I have faced, and will very likely continue to face, I’m grateful for my life.

The most misguided argument in promotion of the right to legal abortion is what I’ll call the freedom from a life of suffering argument. Sometimes it goes something like this: Abortion shouldn’t be restricted because most unwanted children end up horribly abused and neglected, and there aren’t enough homes for all of them! Other times it goes like this: People with medical condition x have very hard lives. A child with medical condition x would be a burden to me and society. I wouldn’t want my child to have a hard life as a person with medical condition x.

Sounds reasonable right? I mean who is going to step up and argue on behalf of child abuse and neglect or its effects on survivors? Who is going to promote leading a life with obstacles around every corner?

But the appeals are neither reasonable nor compassionate. They are dehumanizing and debasing. Just because a child is unwanted by his or her biological parents, she or he is by no means doomed to a childhood filled with abuse. Unwanted does not necessarily equal abused. Conversely, a wanted child is by no means guaranteed a life free from abuse or neglect.

Most importantly, even if a child (wanted or unwanted) does end up experiencing abuse or neglect, it is the right of that human being to decide for herself whether life is worth living as a survivor.

The second manifestation of the freedom from a life of suffering argument serves to promote genocide against people with disabilities. It is common knowledge that pre-born people with genetic markers associated with disabilities are frequently aborted.

My mother liked to remind me throughout the course of my childhood that she could have aborted me. The power granted to her by that statement was palpable. It was visceral. I didn’t have to be here. I was only here because of what she presented as her nearly messianic benevolence.

The very fact that I exist today and advocate for disability rights would not be the case if my mother had chosen to hand over the right sum of money to the right doctor.

My mother allowed the men in her life to abuse me. I was homeless as a teen and resorted to prostitution to survive when I was still a minor child. Would I rather have been humanely relieved of this life so that I never had to endure that suffering?

No.

It took me a good deal of time to recover from the abuse I endured as a child and teen. Years of meditation and reflection finally allowed me to see things as they are and were. Temporary. Transient. Non-defining. Traumatic events were experiences I had lived through. The experiences were not me. They were events in time that had not been instigated by me. I was free to choose how my mind responded to them. I was free to live a life that extended beyond those events.

I was not doomed. I have not perpetuated some mythical “cycle of abuse”. I am a human being who speaks. I am a human being who thinks. I am a human being who loves. I am a human being who matters.

Just because you can’t imagine surviving what I have survived does not make it your moral right to decide for me or anyone else whether they can survive and thrive. Survivors of abuse and people with disabilities are often told horrific things. People say to us, “I’d kill myself if I was deaf/blind/paralyzed…”, “I’d die if that happened to me.” “My autistic child ruined my life.” “My Down syndrome child ruined my marriage.” It is this same mentality that drives people to declare that some children should compassionately be spared the burden of existence, because they may endure challenges that seem unfathomable to some.

That I experience disability, marginalization, and abuse survival does not mean that my life is not worth living. It does not mean that I shouldn’t be here to use my voice. It does not mean that I shouldn’t be here to love and lift up others in my community.

Imagine if a woman stood up and recommended gender selective abortion for female embryos based on the argument that women are statistically more likely to encounter adverse life events like rape and discrimination. How about if a woman recommended euthanasia for females who had been raped based on the argument that females who have been raped will inevitably suffer.

To stay consistent in our reasoning we might then want to consider the forcible sterilization of all women of childbearing age in all war zones across the globe. Because what kind of future could a child born in a war torn environment have?

Do those ideas strike you as reprehensible? I hope they do. They are very analogous to the pro-choice freedom from a life of suffering argument.

Child abuse and neglect need to end. There needs to be more support for survivors. Likewise, people with disabilities need support, as every human being needs support. Nothing about my disability reduces my inherent humanity.

Even though abuse and neglect persist, a person cannot reasonably consider themselves to be moral if they believe they can decide for me that I shouldn’t be here because I am a survivor of crimes perpetrated against me or because I live with disabilities. If women have compassion, then they must recognize that it is not within their moral power to determine whether another human being who poses no threat to them has the right to be on this planet. If my life isn’t a threat to yours, I have just as much a right to be here as you do.

I believe that everyone has the right to be here. Every single one of us. Disabled and able, of different sexual orientations, of different genders, all ethnicities, all religious affiliations, no religious affiliations, and of all nationalities. All of us have a right to exist and a right to self-determination. We have a right to love each other, support each other in our struggles and hold each other accountable for our errors. We have a right to basic necessities like food, water and health care.

I’m not looking to change laws, I’m looking to change the conversation. I think there are some circumstances where abortion is absolutely a moral choice. But the appeal to freedom from a life of suffering argument needs to be examined and discarded, because if lives like mine aren’t respected, then the conversation is in no way liberating, empathetic, pro-woman, or inclusive.

 

Research Uncovers Possible Mechanisms behind PMDD

Survivors of PMDD, their families, and in some cases their health care providers welcomed news this week that research has revealed possible mechanisms behind the disorder. It is my hope that this research will encourage even more investigation into the hows and whys of PMDD, so that more effective non surgical treatments may someday be available to women who want to live a life unfettered by the agony produced by a maladaptive reaction to hormones.

While this research vindicates the subjective reports of those afflicted by PMDD, we still have work to do. This information must be distributed so that understanding of PMDD grows. Once broader society and the medical community reach a point of greater understanding, it will be more likely that women with PMDD will be taken seriously.

PMDD is a serious medical concern that merits serious medical treatment. Now we have research on our side.

 

 

Clarification regarding my PMDD-free post

I’m offering this post to clear up some misunderstandings related to my 2 Years PMDD-free post. I understand that the words I chose may have facilitated the misinterpretations that some people had of the piece.

My first priority is to advocate for more research into PMDD. I would very much like for non-surgical treatments or cures to be made available to women with PMDD so that we do not have to resort to surgery. But with that being said, presently, hysterectomy and bilateral oophorectomy is the only known permanent cure for PMDD, and I think that when a woman with PMDD requests surgery, her request should be taken seriously.

I don’t think hysterectomy is desired as a first line treatment by many or perhaps even any woman, and I am not advocating for ‘handing out hysterectomies’ or ‘ripping out uteruses’. I do think, however, that a woman whose very ability to live is being compromised by PMDD should be able to have an adult discussion with her treating physician about the possibility of surgery. I do understand that a hysterectomy is a major and irreversible surgery and like all major surgeries, comes with some degree of risk. I also understand that it is not appropriate for and cannot be undertaken by all women. I know that there are lots of factors to consider in such a decision. I would hope that any capable physician could address these issues and concerns when meeting with the patient affected by PMDD.

I also never stated there was a definitive link between autism and PMDD. There is no research into correlation or causation between autism and PMDD that I am aware of, which is why I characterized my discussion of it as anecdotal. The possibility of an underlying shared mechanism between autism and PMDD crossed my mind after numerous discussions I had with other women who are both autistic and affected by PMDD. I never said it was scientific. I am asking for studies to be conducted to prove or disprove a relationship.

The same thing applies to my question as to whether PMDD is an expression of an autoimmune process. It’s a question that has crossed my mind, I can offer no evidence in support of my hypothesis. I said that clearly. I would love for research to be conducted to determine whether my thought process is correct.

The bottom line is I want more research so that women with PMDD can have more options for treatment. I want women who complain of PMDD to be taken seriously by their health care providers. And I want women who do ask for hysterectomies to be treated as autonomous decision making adults who are capable of having a discussion about the pros and cons, and risks and benefits of hysterectomy with the physicians who are treating them.

I would actually be delighted if any or all of my speculations about PMDD causation were proven wrong, because that would mean that someone is actually doing some research. I want women with PMDD, both neurodivergent and neurotypical, to be able live the lives they envision for themselves. I want women with PMDD to have their happiness and equanimity restored, but more critically I want the women with PMDD and their families to no longer fear losing women to preventable suicides. I want the medical community to take the complaints of women with PMDD seriously. If those things happened and every single thing I’ve ever said about PMDD turned out to be wrong, I’ll be overjoyed.

Why I’m Not Celebrating 2 Years as PMDD-Free

On December 24, 2014, I had a hysterectomy and bilateral oophorectomy that cured the PMDD I had been fighting for almost a decade. PMDD stands for premenstrual dysphoric disorder, which is a hormone based mental illness with extreme manifestations and consequences. PMDD is a beast that can transform the most healthy and loving minds into wicked and self loathing shells of consciousness. And it works that evil like clockwork, each and every month.

So why aren’t I celebrating my freedom from PMDD? My peace and equanimity have been restored. I no longer take any psych drugs. My only prescription is estradiol as a hormone replacement. I love my husband again. The crying fits are over. My motivation is restored. Suicidal thoughts are nothing more than a dark memory that lives in an ever more distant past.

I’m not celebrating because so many of my sisters are still stricken by this disease. They are pleading with general practitioners, OBGYNs, and psychiatrists for access to effective treatments. Yet they remain unheard. My sisters are remanded to the care of mental health professionals who ply them with therapy and scripts for SSRIs, SNRIs, and benzodiazepines, none of which offer long term relief from the horrors of PMDD.

Why are we still suffering when there is a cure? A hysterectomy and bilateral oophorectomy, a relatively inexpensive surgery that rarely has major complications can permanently end our monthly misery.

I think there are many answers to the question above. First, many practitioners of medicine do not take the complaints of women seriously. Studies show that women’s reports of pain are commonly dismissed by physicians and women’s reports of disease processes are written off as psychosomatic.

This happens in the face of other studies that demonstrate that women, especially those of childbearing age, are affected by hard-to-diagnose autoimmune diseases at a much greater rate than men. Medicine has a very long history of ignoring the legitimate complaints of women. We are frequently handed psychiatric diagnoses before we are offered lab tests or diagnostic imaging.

Many ailments that were once thought to be psychogenic are now known to have a physical genesis. It wasn’t until the 1980s that h. pylori was demonstrated to be the mechanism behind peptic ulcer disease, which was previously blamed on stress. The 1980s also unveiled the etiology of Lyme disease. In the more remote past, epilepsy and Crohn’s disease were also once thought to be psychogenic.

The etiology of PMDD is not yet known. I suspect it is autoimmune in nature and is somewhat akin to an allergy to progesterone. But that is simply anecdote at this point. Another anecdotal observation I have made is that PMDD, dysmenorrhea, and other symptoms of hormonal disruption or intolerance are very common among women on the autism spectrum.

In medical terms PMDD seems to be commonly co-morbid with autism. But we autistic women are still fighting for recognition because there is an ongoing misperception that autism is a condition that almost exclusively affects males. Autistic women, particularly those of us born before the 1990s, are commonly misdiagnosed with bipolar disorder or borderline personality disorder before reaching a point of accurate diagnosis. Obtaining effective health care as autistic women is an uphill battle that is especially steep and discouraging.

If research into PMDD continues to be set aside because it remains classified as a psychiatric disorder, most theories of PMDD causation will remain anecdotal. And in the meantime more women will lose their quality of life or in some cases their actual lives.

Women affected by PMDD are discouraged and sometimes outright barred from access to the surgery that can cure us. Many physician’s perspectives are still so paternalistic that they do not believe we should be granted the freedom to part with our reproductive organs, even if those organs are destroying us.

We’re up against a lot in the effort to bring attention and research to PMDD. We’re up against a culture who’s instinctual reaction to perceived ‘new’ diagnoses is gaslighting, which is the systematic repudiation of the report of the afflicted person, no matter how legitimate that report may be. Couple this propensity to gaslight people with ‘new’ disorders with a low regard for the credibility of women’s reports to their health care providers, and it starts to look like we have a very long and difficult road ahead of us in terms of awareness and research.

We also face proponents of toxic femininity, who tell us that PMDD is a cultural myth so that they can promote a fantastical feminine ideal where female hormones play no role in disease processes. I’m sure that all of the women with polycystic ovarian syndrome and endometriosis, syndromes that are also frequently co-morbid with PMDD, would love for that fantasy to be true, but unfortunately, it remains a fantasy.

So I’m not celebrating my 2-year anniversary of freedom from PMDD. I can’t celebrate while my sisters suffer. I will continue to use my small online platform to advocate for recognition of and research into this disorder, because our complaints are valid, and we cannot remain unheard.

Let’s Talk About Privilege and Disability Again

Recently I was in an online disability discussion forum for disability X. One forum member, who I’ll call Jane, chided the other forum members for not contributing more money to a fundraiser that was underway to fund efforts to find a cure for disability X. Jane went on to say that finding a cure for disability X should be the biggest priority of everyone in the forum.

Now, disability X is never fatal in and of itself, but it can prevent you from working. From those premises I concluded that it was really messed up for Jane to be schooling people, many of whom can’t work and therefore have income limitations, for not donating more money that they may not have to fund a cure for a non-lethal health condition.

Now I realize that not being able to work may lead to death, especially in countries like the US, where financial assistance programs for disabled people are paltry or non-existent, and that was part of my point. But I also realize that some people live with disabilities that not only prevent them from working, but can also at any moment kill them in their own right. And people with those types of potentionally lethal disabilities are among the most cherished people in my life.

So, in what I now realize was a somewhat socially inconsiderate way, I responded to Jane’s post by reminding her that not all people with disability X can or should make donating a priority. I used a personal example and said something to the effect of, “I didn’t donate until very recently because I had to prioritize using my financial resources to help keep a friend from being killed by disability Y. I don’t agree with the assumption that donating to this fund should be everyone’s biggest priority.” I imagined that would be the end of it. Jane might agree, disagree, or ignore me and life would go on, at least for those of us with non life threatening health conditions.

Imagine my surprise when the gates of Hades swung open and a flaming Facebook Messenger note landed in my inbox from the moderator (M) of the group. I was told that my post had been deleted and a demand was made for me to explain why I had thought it appropriate to berate Jane, who had generously offered to match donations for the fundraiser. I responded with something along the lines of, “I didn’t berate Jane, but I wrote what I did because her post reeked of financial privilege.”

I was somewhat unprepared for the intensity with which hellfire and brimstone can scorch a person’s laptop. Messenger continued to rain down a cascade of flaming messages from M castigating me for using the word privilege and again accusing me of berating a benevolent, generous, selfless matching donor. M told me that a discussion of privilege had no place in that forum. M even threw in a Joyce Meyer quote admonishing me to not take offense even if offense is given. Ha! I’d never heard of Joyce Meyer before. But a quick Google search revealed to me that she seems pretty big on blaming individuals for having sane human reactions to injustice issues.

And that is where this blog post really jumps off. Because I absolutely disagree with M that a discussion of privilege doesn’t belong in a disability forum.

According to the Cornell University 2014 Disability Status Report for the United States, the poverty rate for people with disabilities is 28.1%, while the poverty rate for people without disabilities is 12.2%. Since poverty affects more than 1 in every 4 disabled persons in my country, I think that discussions of poverty and privilege in disability forums should be front and center.

M had reacted to the word privilege like it was the dirtiest obscenity that I could have written. M even challenged me to point out how privilege had supplanted M’s hard work and resulting presumably stable financial position. Now I hadn’t been talking about M at all, but once the pesky P word came out, M sure took it personally.

There are a lot of misunderstandings about the P word, and it is usually most misunderstood by those who benefit from it.

Having privilege does not necessarily mean you are a bad human being.

Having privilege does not necessarily mean you have not worked hard for what you have.

Having privilege does not necessarily mean that you are an oppressor.

But you can have privilege and also be bad, lazy and oppressive, and you are way more likely to be any or all of those things if you refuse to acknowledge your privilege.

I have privilege. I have financial privilege, which is basically privilege by proxy because of my well paid spouse. I have privilege because I live in a mostly safe neighborhood. I have privilege because I am educated. Although I am a person of color, I have privilege conferred to me by my light skin. I have privilege because I am a native speaker of English in a primarily English speaking country. I have yet more privilege because the way I speak English is considered ‘standard’ as opposed to being regional or of a dialect associated with a minority group. I could go on and on, because I’m really a very privileged person.

Nothing in the paragraph above means I haven’t worked my ass off. I went from homelessness to college graduate largely due to my own efforts. I’m a sexual assault and child abuse survivor. I’m a medical abuse survivor. I am autistic. I have severe hyperacusis. I also have severe central auditory processing disorder, which makes me functionally deaf in situations where there is background noise. My life has not been easy. But my privilege exists despite the reality of any of those things.

Acknowledging my privilege is acknowledging that even though I worked my ass off, and it has been a damned hard road, that I still have or had qualities that removed from my path some of the obstacles that may stand in front of others. Despite my hard work I will never look another person who has faced different or even the same obstacles in the eye and tell them they should have ended up where I am, at a place of privilege. Because that’s bullshit. It’s demeaning, and it’s wrong.

Now I realize that distinguishing disabilities into categories of immediately life threatening and not immediately life threatening is a delicate thing to talk about. Like I said, if you can’t work, you might very well die. My point isn’t to create a hierarchy of disability badness and divide the disability community, but rather to point out that there are lots disability dynamics worth discussing, rather than ignoring.

All people involved in creating or advocating in disability forums need to be open to discussions about how some of us are dying because we don’t all have access to the same resources, regardless of how hard we have worked or would be willing to work if we could.

Looking back, I don’t think necessarily think Jane meant to make anyone feel terrible, but I can’t be sure. I certainly don’t think my response berated Jane. If it somehow could be perceived that way it was not my intent. I intended for my response to prompt thought and reflection on the potential impact Jane’s words might have on disabled people who cannot work or don’t otherwise have financial resources and therefore cannot offer donations. If I could write it again, I would word it differently. I’ll be the last person to claim to have never typed anything insensitive. So while my choice of words may have been less than ideal, I stand by my sentiment. Discussions of privilege in disability forums should be central, rather than censored, because some of us are dying out here.

So I’m Autistic. Now what?

I’m a 41-year-old woman of color and I got diagnosed with autism this week. The clinician who rendered the diagnosis was of the opinion that Asperger’s syndrome should still be in the DSM and is a more accurate description of what I experience. He talked quite a bit about the ebbs, flows, and revisions of diagnostic designations. I liked that he had reflected on how diagnostic categories change and mutate with time, data, and cultural norms.

I don’t trust people who simply abide by rules without questioning them or reflecting on their origins. I’ve been on the wrong end of diagnostic labels for most of my life due the refusal of clinicians to do a thorough investigation. Major depressive disorder, nope, generalized anxiety disorder, nope, borderline personality disorder, nope try again, autism, yep, that’s it! I was glad to have found someone with whom to have a dialogue rather than a top down testimony on the labels of my life.

I know for many people, an autism diagnosis is a real ah ha moment. For me it was more of a ha ha moment.

Several things motivated me to seek a diagnosis. First, I have recently completed a memoir that outlines my nightmarish journey through the American mental health system where I received the misdiagnoses listed above and many, many more. In reviewing my text, my editor remarked that some of my thought processes seemed unusual. She pointed to passages that recognized relationships among things that most people would view as distinct. Another motivator was a realization I had earlier this year, when I was diagnosed with auditory processing disorder (APD). I realized that my lifelong habit of seeing sound instead of just hearing sound is not a skill utilized by all people. It is a phenomenon called synesthesia and it is often found in people who are described as autistic.

That’s right, I see sound. When there is background noise and I’m trying hard to understand you, the potential spellings of all of the words that come out of your mouth are displayed in my mind’s eye like a flashing electronic billboard.

Once I realized there was a word for this I dove in and read up. In researching synesthesia I encountered a great deal of information on autism, and recognized that several of my behaviors fit the bill. I am easily absorbed by my interests and will neglect everything else in my life if I become enticed by an idea that requires more investigation. I have significant sensory sensitivities. I can become non verbal when I experience sensory overload. As a child I was prone to what are colloquially known as meltdowns when I encountered too much sensory stimulation. I prefer the company of ideas, concepts, and projects to the company of other people with few exceptions. I have memories of being chided for displaying what adults considered to be inappropriate facial expressions at inappropriate times. As an adult I have been accused of being “impossible to read” because my facial expressions can be more muted than those of most people.

So after some digging, I found a clinician who would engage in a conversation with me about whether my experiences would be called autistic by himself and his peers. After two lengthy interviews he confirmed my experiences would in fact be considered autistic.

I smiled in response to his proclamation. Ha ha. The folks with advanced degrees have a word for this.

Autism and auditory processing disorder occur together in some people (I don’t like the term comorbid, it sounds deadly), but they are not necessarily mutually inclusive. You can have one without the other. I happen to have both.

My APD diagnosis added value to both my present life and how I view my past. It explained or at least attempted to explain my lifelong inability to hear in environments with background noise or poor acoustics. I had endured 40 years of being shouted at and demeaned as inattentive when I simply could not hear and asked for repetition or responded inappropriately due to a misunderstanding of spoken language. It was nice to have my experience of years of functional deafness diagnostically confirmed. After my APD diagnosis I knew what my options were. I could pursue treatment or learn an alternative visual language such as American Sign Language. I eventually chose to do both.

The autism diagnosis has only added a little value to how I view my past. It adds value to know that some of my behaviors, such as my silence when I encounter too much sensory stimulation, or the self soothing behaviors I exhibited while young, such as rocking back and forth or covering myself in blankets, are not associated with a mental illness but rather with a brain difference. It adds value to know that similarly, my emotional outbursts in response to sensory overstimulation have nothing to do with a personality disorder as had been posited by some of the fools in health care I had previously encountered.

Prior to diagnosis, I had already modified some of the more stereotypically autistic behaviors I engaged in when I was younger. For example, I used to find it very hard to empathize with people who behaved irrationally. I have never had a problem empathizing with people whose rational motivations I understood. But hours of loving kindness meditations have grown my capacity to understand the emotional states of other human beings, to some extent even the irrational states. Similarly, the profound social difficulties I experienced as a child all the way up through my early thirties have been largely mitigated by my intense efforts to pay closer attention to people and imitate standard social behaviors. I restrict my anxious hand flapping and excited bouncing to my home for the most part and everything is fine.

The fundamental difference in why the autism diagnosis hasn’t added much value to how I view my past and why the auditory processing disorder diagnosis has, is that only one aspect of autism as it presents in me is disabling. All of the other aspects I view as strengths or assets. The clinician from whom I got a diagnosis characterized my greater ability to function in terms of communication and intellectual ability as the trait that put me in the Asperger’s group he longed to reinstate in the DSM as a distinct diagnosis instead of the general autism group.

In his assessment, Asperger’s folks are what people used to refer to as high functioning autistics. I prefer to think of us as high conforming autistics because the gauge of measurement references Aspies’ greater ability to pass for neurotypical. To pretend there is some unbiased measure at play in the distinction is foolish, it is a matter of conformity or the appearance of conformity to neurotypical culture and society that tempts some clinicians to separate autistic people into categories.

Higher functioning or Aspergian are value laden classifications. Some autistic people cannot or will not conform to neurotypical standards, and I see nothing wrong with that. Society disables people by removing access to employment to those who can’t or won’t conform to certain social precepts or cannot perform offer optimal performance in sensory unfriendly conditions. The autistic condition is not inherently lacking.

I’m only high conforming in quiet environments. My sensory challenges, in my case hyperacusis, which is profound sensitivity to everyday sound, prevent me from participating in life in the ways that neurotypical people do. I lose clarity of thought and the ability to speak when things are too loud. This quality is related to autism as well as auditory processing disorder.

Otherwise, autism as I experience it, is mostly benign or even helpful. I love my hyperlexia and my ultra rational thought processes, and I wouldn’t trade either for anything in the world. I don’t want to change them to achieve higher conformity. My synesthesia helps offset my auditory processing disorder by allowing me to see words in addition to hearing them. If I must live with APD, I prefer to also live with synesthesia. Autistic is simply one facet of how I view things and how I am inclined to respond to things.

In contrast, every aspect of auditory processing disorder is very much a disability. I have incredible difficulty hearing in certain environments, including any environments where more than one person is speaking. When many people talk at once, their words become blurred and indistinct. All the voices melt into one big pot of sound and color. I cannot sort out which words came from which speaker and find meaning in the cacophony. That destroys my ability to participate in many forums and activities.

Even though the autism diagnosis didn’t add much value to my interpretation of the past, it has added value to my view of the present and future. I have found a community of fellow autistic people whose insights and talents are amazing. I cherish this newfound fellowship.

Finally, my perspective on my diagnosis is informed by my Buddhist beliefs. The Buddha taught that self is an illusion and I think this teaching is true. Autistic would be a description of my existential reality or self, and as such is somewhat of a shallow and illusory description.

I have been able to influence the way I think and behave through meditation. I could even say that meditation has made me less autistic and more conforming than I once was. Whether that is a good thing is a matter of opinion. Auditory processing disorder is more a description of an ongoing experience than an existential reality. I have not been able to influence my inability to hear through meditation at all. Nor have I been able to influence my inability to hear through audiological therapy or any other efforts.

It has been an interesting journey so far navigating the descriptions I use for myself and the descriptions that people in the medical community would use to describe me. So now what? I will continue to lead my life as before, but as a proud member of a beautiful community of fellow autistic people. That makes my journey priceless.

It has been an interesting journey so far navigating the descriptions I use for myself and the descriptions that people in the medical community would use to describe me. So now what? I will continue to lead my life as before, but as a proud member of a beautiful community of fellow autistic people. That makes my journey priceless.