Bad Mental Health Take on Autism - One More from Allen Frances

Before Mental Health Awareness Month draws to its nonconsequential end -- 

Allen Frances

New York Post has published a new interview with Allen Frances about how bad it is to receive a diagnosis, or as he puts it, become a mental patient.

Become a mental patient?

Some background: Allen Frances is a professor emeritus of psychiatry and behavioral sciences at Duke University. His fields of research were wide ranging, including personality disorders, chronic depression, anxiety disorders, schizophrenia, AIDS, and psychotherapy. [Note: not autism]. He served as the chair for the DSM (Diagnostic and Statistical Manual of Mental Disorders) task force, which published the DSM IV in 1994. He later became the chief critic of the DSM 5, which is a modest revision of his work.

In a nutshell--he didn't like any of the revisions.

As part of Frances's critique of the DSM 5, he wrote Saving Normal, subtitled An Insider's Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. His book was published one week before the DSM-5. Since then he has continued the themes of the subtitle.

In addition to my review of his book linked above, I have commented a few times on Frances's statements. I appreciate his concerns about Big Pharma's influence in the treatment of mental illness and inappropriate use of medication, especially in the case of mild depression. His periodic attempts to save normal, not so much.

A couple quotes from his New York Post interview:

Dr. Allen Frances told The Post that he is “very sorry for helping to lower the diagnosis bar.”

Now, Frances said, he fears his work “contributed to the creation of diagnostic fads that resulted in the massive over-diagnosis of autistic disorders in children and adults.”

Stigma Against Mental Illness

One of the themes of Saving Normal is that diagnosis exposes people to stigma. So it would be worrisome to him that so many people are now mental patients, newly exposed to stigma.

I'll grant Francis this point. Prejudice against mental illness is alive and well - and particularly dangerous when it is expressed in the medical field.

There is scant evidence that Stamp Out Stigma campaigns have moved the needle, except on the issue of depression. Judging by news reports, prejudice against people with mental illness has been growing. 

• Police killings of people with mental illness are routinely excused.

• Recently, an ex-Marine is lauded as a hero after putting Jordan Neely, a disturbed man on a New York subway, into a choke hold for fifteen minutes. In two days Daniel Penny raised over $1.5 million for his defense against a charge of second degree manslaughter.

• As politicians regularly blame mass shootings on mental illness, they also routinely reduce funding to address it.

The thing is, prejudice against difference does not stem from diagnosis. It stems simply from difference itself.

A Diagnosis of Autism

In the case of autism, let me suggest an alternative to Francis's view.

From the anecdotal evidence of many people finally diagnosed in adulthood, the diagnosis brings not stigma but relief. They had already been stigmatized throughout childhood. Not by a psychiatric diagnosis, but by the schoolyard diagnosis weird and the classroom diagnosis behavior problem. They grew up being bullied and punished because they were not normal - to use Dr. Francis's favorite word.

People diagnosed with autism in adulthood often already have other diagnoses, most commonly depression and anxiety. They sometimes have experienced suicidal thoughts or attempts. These are the consequences not of their undisclosed diagnosis of autism, but of the way they have been treated by others - on the basis of their difference which it does not take a psychiatrist to notice. It only takes a psychiatrist to explain.

Hence their relief - finally to have an explanation.

The NYP quotes the statistic that rates of autism in the US have soared 500% over the last sixteen years. This is a bait and switch statistic. The DSM 5 changed the definition of autism, combining profound autism, childhood disintegrative disorder, pervasive developmental disorder, and what was once called Asperger syndrome under one umbrella diagnosis, autism spectrum.

Whether or not combining these conditions with different treatment needs under one label was a good idea is a separate discussion. But the change in rates was not as drastic as the statistic suggests. The numbers for three separate diagnoses have been added to the first.

But it is not the first time Dr. Francis has played fast and loose with statistics to claim over-diagnosis. The statistic does not support his thesis of over-diagnosis because the sample population has changed.

Underserved Children with Autism

The article misses the most significant part of the story, reported in the journal Pediatrics. There are significant disparities in rates of diagnosis between white and black children and between affluent and poor children:

Black children were 30% less likely to be identified with ASD-N compared with white children. Children residing in affluent areas were 80% more likely to be identified with ASD-N compared with children in underserved areas.

The consequence of under-diagnosis is that, while rich white kids get services, poor black kids get placed in the school to prison pipeline.

There are real life consequences to under-diagnosis. Poor black kids should not have to pay the cost for Allen Frances's hobby horse.

More Next Week

So clearly, I have thoughts. Lots of thoughts. It's time to sign off for this week and promise more to come. But you are welcome to join the conversation by commenting below!

World Bipolar Day: What the Heck Happened to my Brain?

Prozac Monologues is a book within a book. Its original form was a series of monologues written in an unrecognized hypomanic state. The rest of the story is what I learned about bipolar disorder after I learned that I have it.

In Balancing Act -- The Science Chapter, I answer the question, How did I get into this mess anyway? I compare it to another question, Why did the roof collapse? Both answers are to be found in a process that begins with something a little wonky and develops into a systemic mess.

The following excerpt skips the charming roof collapse explanation (inspired by true events during one Central Oregon snowmaggedon in 2017). Buy the book for that story! It goes straight to the science part. Let me know in the comments what you think.

A Book Review: Loving Someone with Suicidal Thoughts

• I just don't want to live anymore
• If only I could fall asleep and never wake up
• One well-placed bullet would solve all my problems
• You'd be better off if I were dead

Oh my gosh, words you don't want to hear from somebody you love. It is tempting, so very tempting to say something that will get your loved one to take it back.

Questions Work Magic: How They Change the Brain

Quick - What does a lemon taste like?

I know what a lemon tastes like. Tell me something else instead:

What just happened inside your mouth?

David Hoffeld asks another one: Want to know what your brain does when it hears a question?

His article from the website FastCompany.com explores the neurological consequences of hearing a question. Questions temporarily hijack the brain. Did you immediately think about lemons? First, serotonin is released, causing the brain to relax. Next you get a hit of dopamine. The question takes over your thought processes while you think about the answer. The technical term is instinctive elaboration.

The hijacking doesn't last forever. The person who was asked the question can choose to ignore it, can argue against it, can go off on a tangent - though for people with ADHD or bipolar disorder, a question that interrupts our train of thought may cause us to derail.

But Hoffeld cites a number of research studies that document when you ask somebody whether they are going to do something, you increase the probability that they will do it - buy a car, vote in an upcoming election, even donate blood.

Questions not only alter your perception. They can even alter your chemistry. Chances are, when you read the lemon question, you started to salivate.

Why Writing Bar Tales of Costa Rica is Good for my Mental Health

Mindfulness

Mayo Clinic describes mindfulness as a type of meditation in which you focus on being intensely aware of what you are sensing and feeling in the moment, without interpretation or judgment. Practicing mindfulness involves breathing methods, guided imagery, and other practices to relax the body and mind and help reduce stress.

For some of us, these meditation exercises, "close your eyes, focus on your breath..." are difficult, frustrating, and stress inducing. Particularly for people with a trauma history or ADHD, mindfulness can be a land mine.

For others, the whole enterprise sounds like woo-woo mental health. Add some essential oils and affirmations - who needs therapy or, God forbid, medication?

But there's more to mindfulness than nonsense.

The same Mayo Clinic article identifies several mindfulness practices. Three could be taken as basic concepts:

• Pay attention
• Live in the moment
• Accept yourself

How does that work out irl - in real life?

Let me tell you about my recent five week stay in Costa Rica. First, the back story:

Prozac Monologues

My first book, Prozac Monologues, began with a hypomanic episode during an earlier trip to Costa Rica. I wrote a series of comedic monologues in an effort to not be mindful. The monologues danced around the memory of a recent Prozac-induced traumatic experience. It began with a bizarre thought, and moved on to some other weird stuff: dissociation, thought broadcasting, paranoia, and the like. 

Years later, once I was correctly diagnosed with bipolar disorder, I added edgy essays about that experience and everything I learned about bipolar disorder while trying to figure out what the hell happened to my brain. Like many memoirs, Prozac Monologues is a hybrid of my story and my issue. Sheila Hamilton's podcast, Beyond Well, captures it. Here's the link. It's also a great read and now available on audio.

Bar Tales of Costa Rica

So what about Bar Tales of Costa Rica? My second book is exactly what the title promises: the stories I heard while sitting in bars in Costa Rica. That sounds like a very different book. Am I a genre hopper?

Yes and no.

via GIPHY

Bar Tales is about a milieu, a place and the people in it. It is not about mental illness. There are passing references to my own. But that's not the point. No references to research. No descriptions of recovery strategies. Stories heard in bars - it's a very different book.

Still, it is a sequel. It picks up where the monologues left off. In the first book, my wife Helen and I thought about moving to Costa Rica. Several months later, we did buy a little house in Playas del Coco. Didn't quite move there, but we spend several weeks there every year.

That's where I continued to work on Prozac Monologues. It's also where I gathered my bar tales, most of them at my sister's hotel and restaurant, the Pato Loco, which means "crazy duck." Other sites included El Bohío (referenced in the first book), Pacifico Beach Club, Coco Palms, and Soda Navidad.

You could call the second book a segue to the first. I turn a corner. That would be a right turn that leads me out of my neighborhood Los Canales, on to the Boulevard de Iguanas, and over to a whole new cast of characters: Patricia, Bruce, Andy, Sydney, Monique and André. Bar Tales is about their stories.

So why is this book good for my mental health?

As I am polishing these tales for publication in the spring of 2024, I spent several weeks in Coco for research. Research.

I wasn't sitting in bars, gathering tales - though inevitably a couple got added to the collection. This time I was gathering sensations. Physical sensations.

Trauma and Sensations

Sensations - these are at the heart of my mindfulness technique.

• The person who has experienced trauma sometimes gets stuck in the past, reliving a loop of troublesome sensations. And let me tell you - being suicidal, as I was, is traumatic.
• Or, in the face of current strife and stress, that person might dissociate - disconnect from present anxiety by going numb.
• Or, based on deeply rooted thought patterns about bad things that happened in the past, the person faces the future with dread, anticipating - and pre-experiencing - a repeat of negative experiences.

Each of these are ways that we lose or escape the here and now. I think of here and now as my worst subject.

The thing is - here and now is where joy lives.

Let me repeat that.

Here and now is where joy lives.

So my research, gathering sensations, experiences in the present, kept me anchored in here and now.

And it filled me with joy.

What color are the rooster's feathers? - bronze head and breast, black legs, wings of teal and red.

What sound do the geckos make? - chk, chk, chk. How about the howler monkey? muffler dragging on concrete!

What do mangoes smell like when they are sitting in the field near my house in the hot sun? - like a fortified sweet wine.

What does carne en salsa taste like? Beef stewed in a rich vegetable sauce with hints of smoke when Juan cooks it all day in an iron pot over a wood fire under the mango tree.

What does it feel like to walk in the surf? Caressing waves, then grit in my sandals.

I walked around town with my phone in my hand, making voice memos, describing these sights, sounds, smells, tastes, and sensations. My mind fixed on the present, there was no room there for regrets about the past or anxiety about the future.

Health Benefits of Mindfulness

Mindful meditation has been demonstrated to reduce anxiety, depression, stress, pain, insomnia, and high blood pressure.

There are many ways to do mindfulness. A review of literature published in Clinical Psychology Review, Effects of Mindfulness on Psychological Health, summarizes the context of mindfulness practice in its Eastern and Western versions and its application in a variety of psychological treatments.

What I offer here is one simplified self-help practice for addressing panic and anxiety, a disciplined version of what I called my research:

Focus on your environment.

• Name five things that you see right now
• Name four sounds that you hear
• Name three things that you feel
• Name two things that you smell
• Name one thing that you taste

Yeah, don't get hung up on remembering whether it's three feelings or three smells. I don't remember the order of the sensations and made it up.

The point is to redirect the catastrophizing brain, to pull it into the here and now. Remember - here and now is where joy lives.

This practice isn't the cure all to my mental health issues. And I doubt it will cure yours. But it gives our poor brains, exhausted by the three alarm fires that usually occupy them, a break. It turns down the temperature and lets a different input in.

And that's a good thing.

One Exciting Thing and One Ironic Thing About Prozac Monologues and Psychology Today

Last week Psychology Today posted Bipolar Disorder: How to Get Correctly Diagnosed, my interview with Monica Starkman, M.D. about Prozac Monologues: A Voice from the Edge. Its tag says, The average of seven years to receive accurate diagnosis is unacceptably high.

Damn straight it is! The article is about how to improve that rate, or at least to improve the odds for the people who follow its suggestions.

This popular journal chose to place the article in its Essential Reads section on its bipolar resource page. The article's key points include:

• Bipolar disorder, particularly Type II, is often misdiagnosed.
• People tend to spend much more time in a depressive state and often do not recognize mild or hypomanic symptoms.
• The chance of getting properly diagnosed is increased by using online screening tools and bringing family/friends to doctor visits.

I spent a mere (!) five years misdiagnosed with major depression, two of them taking the antidepressants that threw me into mixed episodes and made me suicidal. A random conversation on an airplane led me to the Mood Disorder Questionnaire referenced in the Psychology Today article. Taking the MDQ was the first step to discovering my bipolar and, more importantly, getting on the road to recovery.

So the exciting thing is that this information will be accessible to a larger audience than those of us who go poking around medical journals. That is my mission. Contact me on my website if I can speak to your book club, church group, or fraternal organization about mental illness and recovery.

The ironic thing? -- The photo the magazine chose to accompany the article.

How Far Have You Come? A Review of Trauma and Recovery

Judith Herman wrote the definitive work on Trauma and Recovery in her book by that title, with the subtitle: The Aftermath of Violence--From Domestic Abuse to Political Terror. You haven't heard from me in a month while I have been living with this book, preparing a presentation on the trauma of suicidal ideation.

It was a trip, that presentation, taking me through the dark corners of my life in the last fifteen years. With Herman as my guide, I also traveled through the progress I have made, considerable progress.

[It's still possible to register for The Healing Conference, now with two for one pricing. Recordings of the presentations will be available through 2021.]

The first half of the book begins the history of the concept, beginning with what was called shell shock in World War I through to Post-Traumatic Stress Disorder, PTSD in Viet Nam, along the way picking up other traumas, sexual violence and captivity.

What is God Doing on World Bipolar Day?

It was not that this man sinned, nor his parents, but that the works of God might be made manifest in him. John 9:3, Revised Standard Version.

Or as The Message puts it: You're asking the wrong question. You're looking for someone to blame. There is no cause and effect here. Look instead for what God can do.

There's the text for World Bipolar Day.

In the Gospel, Jesus heals a man born blind. Presumably what God can do is made manifest by that healing. So, okay, Jesus, what about me?

What about me? How many people, with how many disabilities, wonder what God is doing, especially those of us surrounded by others who wonder, Who sinned, this one or the parents?

Five Good Books I Recommend for World Bipolar Day

Knowledge is the key to taming this beast we call bipolar disorder. The more you know about what is happening inside that beautiful brain of yours, the better you can avoid letting it bite you in the butt.

Alas, many people with bipolar think their doctors will tell them what they need to know. Most of the psychiatrists I have seen gave me an abbreviated (and sometimes disingenuous) description for potential side effects of the pills they prescribed. And that's it.

How do I actually live with this beast? Take my meds. What will it mean for my life? Not so much as a pamphlet.

Psychoeducation for bipolar disorder has been shown to reduce recurrence of depressive, manic, and mixed episodes, all three, and to reduce hospitalization, as well. It includes information about the biological roots of the disorder, the rationale for medication, other treatment options, early warning signs of episodes, and common triggers. It aims to improve adherence to treatment plans. It usually is offered in a group setting.

It isn't offered often.

Understanding Bipolar Disorder - A Review

On the one hand, bipolar disorder can sweep like a tornado through a family, disrupting every aspect of daily living and relationships.

On the other hand, family members can be one of the most significant resources for a person's recovery and stability.

In my own case, my wife is the one who described the symptoms that helped my psychiatrist recognize that I have bipolar, not major depression. But once that happened, what did she, as a family member, as the member of the team with day to day, hour to hour access, receive by way of help and guidance?

Nothing. Not a word. Butkus. Like, not even a pamphlet.

Really Nothing GIF from Really GIFs

Nope, nothing. She worried. She worked from home to protect me at my sickest. She shouldered every responsibility. She thought through and recommitted to and excelled at "for better for worse, for richer for poorer.

Eventually she got to Family to Family, NAMI's program for education and support of people whose family members have a mental illness. And that helped. It gave her a skill set. It let her know she was not alone. It was more than a brochure.

What she needed was Aimee Daramus's new book Understanding Bipolar Disorder: The Essential Family Guide. Daramus, a clinical psychologist with over twenty years of experience in mental health, from psych units to private practice, has written the definitive guide for family members of people with bipolar. She takes you by the hand and leads you from a chaotic landscape to a steady path.

Gratitude - The Prozac Monologues Publication Edition

Fifteen years! From the hypomanic first draft of Prozac Monologues on a yellow legal notepad to a published book, and the nail file that inspired it all.

The book was officially released into the wild this week and will be celebrated in two launches, one sponsored by Paulina Springs Books in Sisters, OR, and the other sponsored by Prairie Lights in Iowa City, IA.

It's a good time to talk about gratitude. Forgive my self-indulgence. It is a day to reflect.

First, people have asked whether it was hard to write about such dark times in my life, if it retriggered some of those emotions. Occasionally, it did. Occasionally I would have a sleepless night remembering, in particular, difficult encounters in treatment. One can forgive sincerely. One can forgive over and over. Still, the brain remembers. I don't harbor resentments, but I can't always hop off the time travel machine that is my brain, how it repeats the tracks laid down by past traumas.

Mental Illness Podcasts: Teaching and Tickling the Mind

I have to move a lot to manage my anxiety disorder. So why did it take so long for me to discover podcasts? I can do research and fold laundry at the same time! Here are four of my favorites:

My therapist recommended The Hilarious World of Depression, hosted by John Moe, a few years ago. And I recommended it to you as part of my Giving Thanks series last November. A depressive himself, John interviews comedians, musicians, and other celebrities, asking the question, Is depression funny? Not everybody thinks so, but that's my brand. The show was recently cancelled. Sigh. But with five seasons, that's a lot of bingeable laughter to come your way. And you can often find Youtubes of the featured comics to extend your pleasure. So have at it.

I should mention that John has just published his memoir by the same name, for when you can sit still and read.

I discovered Beyond Well, hosted by Sheila Hamilton after reading her memoir about her husband's undiagnosed bipolar and subsequent suicide. It is the cautionary tale and not so funny version of my book. Well, she wrote hers first, but I don't want to say I wrote the funny version of hers. It's not always funny.

Pride Month Report: What Parents Can Do for Their Trans Daughters and Sons

1.8 million LBGTQ youth (13-24) in the US seriously consider suicide each year. The numbers for trans people in particular are even more staggering. According to the UCLA Williams Institute report, 81.7 percent of those surveyed by the National Center for Transgender Equality had seriously thought about killing themselves in their lifetimes, and 48.3 percent had done so in the last year. 40.4 percent of transgender people attempted suicide sometime in their lifetime.

Suicide happens when pain exceeds resources for coping with pain. This report adds evidence to that assertion. The following statistics are pulled directly and paraphrased or quoted from this report.

Misconceptions about Suicidal Thoughts

My publicist seems to think people have a lot of misconceptions about mental illness (she's right), because many of her questions go there. You are very open about discussing your own struggles with suicidal thoughts. What do you think are the biggest misconceptions about people going through similar experiences? So today's post will focus on suicidal thoughts or suicidality.

Suicide is not a choice

The way people talk, you'd think we sit down and make a list, pros and cons of suicide. Then based on our calculations, we make some kind of decision. She chose to end her life. Or, How could he have been so selfish.

This is called the volitional theory of suicide, suicide as an act of will. The suicide prevention approach that addresses it is to weigh in on that list of pros and cons, like Jennifer Michael Hecht's book, Stay.

You know -- Suicide is a permanent solution to a temporary problem. Or, Think of what you'll miss out on. Or, whatever. In other words, how dumb or short-sighted or irresponsible or selfish you must be to decide to kill yourself.

The End of Miracles - A Review

What is it like to have depression with psychotic features?

What is a day like inside a psych ward?

What is the psychiatrist thinking?

Sometimes the best way to explore questions like these is in a story. So here is Prozac Monologues' first review of a novel.

Monica Starkman is a psychiatrist at the University of Michigan whose expertise includes psychosomatic disorders, stress, and women's issues around fertility, miscarriage, and obstetrics. In her debut novel, The End of Miracles, she turns her clinical experience to the story of one woman, Margo Kerber, a long-infertile woman who finally conceives, tragically miscarries, and then... unravels.

Prozac Monologues - A Book is Coming

The life of an author - this author anyway:

Mornings I work on finding my peeps. Twitter has been a revelation to me. I resisted it for years until I discovered what was possible. It's not all politicians and celebrities! I thought I was supposed to do Twitter because that's what you do when you want to sell books. That made me feel icky.

But then somebody reframed it for me:

There are people out there who have a question, a need, a pain point. Can I address their pain point? If so, how do they find me?

Giving Thanks for John Moe

Is depression funny?

John Moe begins every broadcast of The Hilarious World of Depression with that question. Then he and the comedian/musician/celebrity of the week talk.

My therapist told me about Hilarious World. I was preparing to do a seminar, OK2Talk about Mental Illness, eight hours total, five segments.  The third would be on humor. It is, after all, part of the Prozac Monologues brand.

Giving Thanks for John McManamy

John McManamy was my introduction to the concept of expert patient, a mental illness educator with lived experience and serious chops, research-wise.

Our relationship began not long after Prozac Monologues, the blog began in 2009, with a skunk. How on earth did I find his tale of too-close-but-thankfully-not-the-worst-sort-of-too-close encounter with a skunk? Probably I googled amygdala. That tells who John is right there. You want to know about amygdala? John will tell you a story about a skunk.

Not Just Up and Down -- A New Map for Bipolar

Last week a friend told me she had just been diagnosed with bipolar.  I remember eight years ago when she told me she was finally getting treatment for depression.  I didn't say it at the time, but for the next several days my brain was screaming it: Really?  In 2016 people are still being misdiagnosed, and mis-treated, mistreated with meds that make them worse.  I mean, 

F*cking Really?!!

Lives are at stake here, people.  Careers, families, credit, and yes, lives. That is what people lose when their doctors get this call wrong.

Saving Normal - At What Cost?

Rest In Peace, John Ferguson

John Ferguson was executed by the State of Florida on Monday, August 5 at 6:17 p.m. ET.  He killed eight people thirty years ago, and many people can't get too excited about his own death.  I understand that.  As a Christian, I am grieved that my nation kills people to show that killing people is wrong.  But I get it.

The civilized world does not get it.  The United States of America is a member of an elite club, forty-three nations that have executed people in the last ten years (brown in the map below, along with China, Syria, Libya, North Korea -- our good buddies, all of them).  We bear the distinction of being the only member from among the developed nations.

We do place limitations on the death penalty.  Our constitution, since its first passage, prohibits cruel and unusual punishment, the eighth amendment.  Over the years, the Supreme Court has ruled that all forms execution are cruel and unusual, except for lethal injection, the method that Florida used to kill John.

American Medical Association on the Death Penalty