Category Archives: Bipolar

Random Bipolar Musings, Part 1

minion eye roll

I figured it would be a good project – asking those closest to me how it was and is for them having a wife/mom/daughter/sister/friend with bipolar. What’s challenging? What’s strange? Anything interesting? Anything good? Or not really?

The project – a series of blog posts interviewing my family members – never went anywhere, and I abandoned it. I suppose it’s not an easy thing to tell someone you love what about them you don’t like, what irritates you, what makes you roll your eyes or grate your teeth. How they make you feel bad when they’re manic and their conversational filters are completely off and they say insensitive things. But you try to be understanding, and you’re glad it doesn’t happen very often. And you’re glad they’re aware of it and take their meds religiously. At least there’s that.

Supposedly we (bipolarians?) are a creative lot, but that may be the only across-the-board positive quality. I know I have other positive qualities, but just saying. We’re all different. Some bipolarians are downright assholes. And their family members might feel that way about them too.

It was unrealistic (and probably unfair) of me to think that people would feel comfortable talking about what my disorder means to them, how it affects or has affected their lives. These are their personal thoughts, memories, and feelings, and they have a right to them. They have a right to keep them private. But it makes me wonder – what would they not want to say? And would I want to hear it?

At least no one has to pull me aside to talk to me about my hygiene (yet, anyway). My 22-year-old son who has autism, bipolar, and epilepsy puts off taking showers as long as he possibly can. I went to have dinner with him as I do once a week and gently, diplomatically had to let him know that he didn’t smell good and needed to shower more frequently. A) He says no one else says he smells, so he must not. B) He says he has better things to do.

Don’t we all?

Taking Bipolar to Work

agony

I become aware of a familiar hollowness in my chest, like something has been removed and I don’t know what it is. I feel shaky. I suggest to the participants in the 2-day workshop I am co-training that we take a break, even though it is not time for one. I go outside and begin pacing. I go up and down the sidewalk, turning around in the driveway of the building where the training is being held. I go back down the sidewalk and return to the driveway, pacing in an arc pattern. I do not feel right. I do not know yet what is going on, but it’s obvious that something is wrong. My co-trainer notices and I say I’m not feeling well. She suggests I go home, that we’re halfway through the second day and she can finish it from here. I apologize and thank her, go back inside to get my things, and get in my car and drive off. I cannot sit still in my seat; I feel an overwhelming urge to continue pacing. I feel like sobbing as I’m driving so I keep gasping, trying to stave off the deluge that I know is coming. I should probably pull over but I just want to get home, feeling guilty that I have left my colleague and that, for the first time at this job, I have “allowed” my disorder to affect my work. After what feels like an eternity I pull in my driveway, run into the house, and sob as I pace rapidly around the dining room table, unable to stop myself. I now realize that I am in the middle of a mixed episode of bipolar, and the relentless churning pain in my head makes me want to die.

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Any employer, co-worker, or client can Google my name and it won’t take them long to discover that I have bipolar. Online, I don’t hide it. In my writing, I try to bring about more awareness of what it means to have bipolar and how it affects people individually. I try to fight the stigma. But the unfortunate truth is that how I present myself online and in my personal life is very different from how I present myself in my professional life. And it’s hard for me to reconcile that.

If I didn’t have bipolar, I wouldn’t have to worry about my colleagues or clients questioning my ability to do my job (read here for details about what I do as a behavior consultant). And despite the fact that on rare occasions it has affected me on the job, I believe that my bipolar enables me to identify with my clients and understand that part of why they feel the way they do and how it affects their behavior. This enhances my ability to provide better ideas for how to support them.

I am one of the lucky ones. In addition to some lifestyle modifications (mostly dietary), I only have to take one medication and it does its job well. I rarely experience debilitating episodes (although I would within a few days of stopping my meds). So why don’t I talk about my diagnosis in my place of employment? Why the “don’t ask/don’t tell” stance?

I don’t really have an answer that makes sense, even to myself. Maybe it’s the fear of seeming incompetent. Or being stereotyped by whatever that person’s exposure has been to bipolar, and having to prove that I’m not like that. But I hope at some point I’ll be brave enough to risk being labeled with the stereotype, to start the process of ending the stigma by starting the conversation about it.

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Maybe my co-trainer had gone online at some point and knew that I had bipolar. I don’t know. Maybe she could just tell that something was wrong, regardless of the cause, and I needed to leave. Since that episode happened, I’ve often wondered (with dread) what I would have done if I had been training the workshop by myself (which is usually the case). I berate myself about it. But emergencies happen. Would I have felt ashamed if, in the middle of the class, I suddenly began to experience severe abdominal pains and could not continue teaching that day? I would have felt bad about needing to stop, but not ashamed. A sudden bipolar episode warrants the same viewpoint. It’s not shameful. It’s not a character flaw. It’s a health issue just like any other requiring medical attention. That afternoon I called my doctor, who prescribed an emergency medication, and I was back to work the next day. Life goes on, and hopefully we are the wiser for it. All of us.

[Image credit: PsychGuides.com]

A Suicide of One’s Own

There are different ways to say it:

Took his own life.
Self-inflicted death.
Died at her own hands.
Offed himself.
Committed suicide.
Killed herself.

Multiple ways to wonder the same thing: Why?

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Though her body of written work is extensive and laudable, Virginia Woolf is best known for her extended essay “A Room of One’s Own” and her self-described “mental disease” – what is now termed bipolar disorder – which led to drowning herself. Statistics say as many as 15% of people with bipolar disorder will commit suicide, half will attempt to, and nearly 80% will contemplate doing so (Everydayhealth.com).

Recently a good friend of the family became one of the 15% (perhaps that is yet another way to say it). He had three prior attempts that we know of. He had severe bipolar. And he had no success with medication.

There are those who would say it should “come as no surprise, considering his history” – as if grief were unwarranted for those who wanted to die. There are those who would say he “gave up on life” – as if the physical pain caused by malfunctioning neurotransmitters in his head had not played a significant role.

And then there is this:

Why.

We may never really know what goes through one’s mind, what demons lurk there, what insufferable agony. There could be many reasons. But does knowing the reason make up in any way for our loss? Our grief? Is it because we want testimony that, no, there was nothing we could have done? Or do we want to berate ourselves till our own dying day that we should have done something? That berating ourselves absolves us of the fact that we didn’t?

But it’s human nature to wonder why – probably because we want to understand. We want to make sense of the seemingly senseless. Most of all we want closure, and to many people knowing why seems to be one way to get it. Why isn’t it enough that a person was in pain? There must be more to it, some think, more reason to have done something so horrible, so irrevocable, so final. So selfish, some think. They don’t ask why; they only judge.

Whether we seek closure or make judgments, we somehow must come to terms with the untimely death that is suicide. We can grieve, we can postulate; we can put someone on a pedestal or we can condemn them. We may try to understand. And sometimes we must accept that trying may be the only thing we’re able to do.

[Image: The Suicide by Édouard Manet]

The Health of Our Heads

In retrospect, I can recognize the signs. It starts with agitation. I mismatch and contradict what people say. My filters are gone and I sometimes say insensitive things, things I wouldn’t normally say or would have said more diplomatically. I don’t sleep well that night. And the next day – well, the next day is unbearable.

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For most people, Mental Health Awareness Month means educating ourselves about mental health and acknowledging its importance. It means that for me as well. I’ve always been intrigued by various mental disorders and learning about them and how they affect people and their families. But over the last two years since the commemorative month was designated, the awareness part of it means something much more personal, much closer to home. May is Mental Health Awareness Month. For me, it’s every month.

My typical bipolar episode is one that most people don’t really know about: the mixed state. It’s when you experience both mania and depression at the same time. There aren’t that many references to it, and when I find one, it’s very short, almost dismissive. And that’s dangerous because of the 10-15% of people with bipolar who commit suicide do it while in a mixed state – you’re depressed but you have the energy of mania to do something about it. One minute you hear raging and wailing in your head, and the next minute you can’t stop crying. You don’t rest. You don’t lie down waiting for it to pass because you can’t. You pace, you walk in circles around the kitchen table, you feel like throwing your head into the wall, and sometimes you do. You’ll do anything to stop the relentless churning. It’s like having an egg beater in your head. And usually the only thing that stops it is the right medication.

Often when people feel better after taking their medication, though, they think they don’t need it anymore and stop taking it. And they immediately go into an episode. I knew that I wouldn’t stop taking my medication because I felt better, and so I developed this false sense of security that if I just took it every day, I would never experience another episode.

But if I don’t manage my stress, I can easily have what is termed a breakthrough episode. It will seemingly come from out of nowhere because I wasn’t paying attention to my triggers, and I wasn’t aware of the signs I exhibit when I’m beginning to go into an episode, the signs I mentioned at the beginning of this post. Over time and vigilant self-awareness, I have come to recognize the signs much earlier and can take some backup medication that my doctor has prescribed for these situations. It usually does the job, and I am back at my baseline within 2-3 days, very grateful that I didn’t advance into a full-blown episode, which sometimes feels like a glimpse of hell.

There are worse disorders than bipolar, worse diagnoses and outcomes. This is not a poor-me post; it’s an attempt to increase knowledge during Mental Health Awareness Month. We are not just in treatment centers and residential facilities. We are among you every day, working, paying bills, taking our kids to scout meetings, grocery shopping, lobbying for our children who have developmental disabilities, trying to function even when our neurotransmitters misfire, hoping like hell that when they do, we’ll gain the upper hand.

[image credit: Gifts for Awareness]

The Journey: Our Neurological Perfect Storm

On average:

These are not good odds. But in neurobehavioral research, it’s the perfect storm.

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At the age of eight I discovered my father’s Encyclopaedia Britannica, a 30-volume set, and read each one. I learned about anatomy and geography and developed a love of history. I also became fascinated by autism. I read about epilepsy. Various mental illnesses intrigued me, especially schizophrenia and bipolar (then called manic depression). I started writing a story about an autistic girl who communicated via echolalia. I wrote another story about a pregnant girl who had schizophrenia. As I got older I began reading other books about autism (that I could find – not too many back then).

It was as if I somehow knew that I would find myself the captain of a boat in a perfect storm, trying to get over the next monumental swell. My son’s autism. His development of epilepsy. My diagnosis of bipolar. Then his. One neurobehavioral wave after another.

When I stop and think about it, I really wonder how he gets through his day, how he does as well as he does. As I know from experience, bipolar on its own can be horrible enough. Add a healthy dose of autism and some grand mals and you have the makings of I-think-I’ll-just-stay-in-bed-the-rest-of-my-life.

It isn’t pretty; it isn’t poetic. There isn’t some beautiful, poignant way I can write about it. Did I know? Was my eight-year-old self subconsciously trying to prepare me for my future? Was God, or fate? (“Oh, so you’re interested in this stuff? Really want to know what it’s like? That could be arranged.”)

The sea has calmed a bit since we finally found the perfect pharmaceutical storm. I don’t even want to think about where we would be without anticonvulsants and mood stabilizers. Back in the days when autism and bipolar didn’t even have names, we would be in asylums. We would be those people you see in old black and white photographs, chained to beds or – God forbid – cement cells. We would be wailing, rocking, wishing for death. How could I know that? Because before medication, that’s what I was doing. Just not in an asylum.

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There are worse things than that trio of statistics. There are those even now who don’t have access to the medication that would alleviate their pain, and those who have tried many medications and still have not found relief. There are many storms besides our own, many boats at the mercy of nature. It is for them that I share my journey, and with it the hope that in some small way, it helps.

*image courtesy of Discover Magazine

Awakening the Heart: Patience

011Part 3 in a series of posts about improving any type of relationship by practicing basic Buddhist teachings, based on a non-residential day retreat taught by the lamas at the Buddhist temple where I used to work. The six basic Paramitas (a word which means ‘going beyond’): generosity, ethics, patience, diligence, meditative concentration, and wisdom. For this series of posts, I have been writing about the first three Paramitas, which focus on our relationship with others (the second three Paramitas, equally important, have more to do with our inner selves). [Read Part 1, Generosity, here]

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If you thought the previous post, Ethics, was hard, brace yourself for patience. When we think of patience, the first thing that comes to mind is waiting in line at the grocery store or maintaining your composure when your young child asks “Why?” for the twenty-eighth time that day. But patience is much more than waiting or grinning and bearing.

It involves endurance and forbearance, and as such, is about strengthening ourselves. When I first heard this tenet, it resonated with me on a deep level. At the time, I was dealing with some very challenging behavior with my young adult son (who has autism, epilepsy, and bipolar), and I realized how important the concept of strengthening was for me. I wondered what on earth I could do to strengthen myself even further, since I figured I had already developed an excess amount of patience over the years. What more could I do? How could I continue to live with the emotional and verbal abuse?

I learned that I could start by “demilitarizing” myself on the inside. According to the Buddhist view, we are victims of our emotions unless we notice how we express them. We must be present, alert, and aware. And we should try not to aggravate the situation by thinking negatively.

For example, my son’s worst episodes of abuse (directed at me) occurred before his bipolar was diagnosed and managed by medication. Negative thinking caused me to lash out in my defense, and to take personally the ugly things he said. I wasn’t realizing that the malfunction of his neurotransmitters had caused it.

This, of course, doesn’t mean that we should just continue to take the abuse. We need to know when it is necessary to defend ourselves and to what degree. When we are in danger of being harmed physically, we should get out of the way. When we are at a point of lashing out, we should leave the room.

The hardest thing is to be patient with a being who causes hurt to ourselves or others. Patience is an antidote to anger, aggression, and aversion, which are obstacles to peace and harmony. Buddhism teaches that the anger is the enemy, not the person. We need to investigate the nature of the one causing harm before taking it personally. Perhaps a loved one had just died. Perhaps they just lost their job or their home. Perhaps they are in pain or have an untreated disorder. This doesn’t excuse or justify the behavior, but it could explain it and help us to find ways to alleviate it.

One of the central teachings of Buddhism is that suffering is a part of life – it’s a universal condition. “Be kind, for everyone you meet is fighting a hard battle,” (attributed to several different sources), is highly applicable here. In my case, my son’s behavior improved for a while, then became abusive again. It was a huge part of why I pursued having him receive supported living services while moving him into his own apartment. I was getting out of the way, strengthening myself. And it worked.

Manic Doesn’t Always Mean Euphoric

After mentioning my medication, I recently told a new friend of mine that I have bipolar. He got this knowing look on his face and nodded, a slight smile appearing on his lips. I might have detected a quick, almost negligible eye roll, but that could have been my own insecurity. Why the little smile? The nod? Was the knowing look because he had a family member or spouse with bipolar? Was it because, like a lot of people, he believes we are overmedicated as a society? Or was it because he thinks we are taught to believe that differences must be labeled therefore most of these disorders are not valid, that everyone gets depressed once in a while and what’s wrong with being really happy from time to time? Why should it have to be medicated?

These are all things that well-meaning people have said to me when I revealed my diagnosis, one that I finally received after years of knowing that something was wrong and being misdiagnosed and incorrectly medicated and suffering off and on for decades. And even now that I have had the right diagnosis for two and a half years and am on the correct type of medication, it doesn’t make the bipolar go away. I still live with it and try to function, which I do better than I would without the medication.

And I’ve noticed that there are a lot of misconceptions about bipolar. Probably the biggest one is the first one below. Of course, there may very well be someone with bipolar who is always euphoric when they are manic. Bipolar is a spectrum disorder, meaning that there’s a lot of ground between depressed and manic and a lot of variance in how people experience it. [Note: Misconceptions are in italics.]

Mania is a state of euphoria. Not always. On rare occasions I’ve been euphoric. I’ve witnessed a few other people I knew who appeared to be euphoric for a brief time. But some people with bipolar never experience euphoria. Often for them manic means what’s called dysphoric mania, which causes extreme agitation, aggression, and angry delusions, which can lead to harming oneself, others, or property, whether accidental or purposeful, with the ensuing arrest and/or hospitalization. This can also happen if someone starts off as being euphoric. Unchecked (unmedicated) mania can lead to acute mania, or psychosis, in which a person can experience hallucinations, both auditory and/or visual. They can be out of touch with reality, delusional, and needing hospitalization. Or the mania might subside on its own, but this is not typical, and often not without damage being done before that point is reached. Being properly medicated can help prevent mania from reaching an acute state.

A person with bipolar goes between the two extremes of depression and mania. After discussing dysphoric mania, it makes sense to continue on to the topic of the various states of bipolar. First of all, different people experience depression in different ways. Sometimes it’s very emotional, with feelings of hopelessness and extreme sadness, as is the stereotype (which is often true). But sometimes depression is very physical. The mental image of a depressed person in bed is not necessarily about them not being able to face the world; it’s often because it takes every effort to move, even a little bit. Making dinner for your kids becomes a Herculean task. Your arms feel like they’re made out of lead. Your brain feels like solidified honey, and it’s incredibly difficult to focus on anything involving mental energy, such as writing. Then there’s agitated depression. You’re depressed but have a little bit more energy, which is caused by a low-grade mania that is definitely not euphoric. Right – dysphoric again. And severe, unmedicated depression can also lead to psychosis, often including paranoia.

In my opinion, and again, this is just my opinion, based on my own experiences, the worst bipolar state of all is the mixed state. Of people who have bipolar, far more suicides occur in the mixed state than in depression. Some say it’s because in the mixed state you’re depressed but you have the energy of dysphoric mania to make you do something about it. For me it would be because I wanted to make the pain stop. Not the pain of my life – the physical pain caused by the dysfunctional neurochemicals in my brain. This is something most acutely felt before I was diagnosed and correctly medicated, not because of the medication itself, although many people feel that their medication makes them feel worse, and I completely respect that. Some people get overmedicated, and that’s just as bad. When I’m in the mixed state, in which I have spent years of my adult life, there is constant churning in my head. It’s painful, and it makes me want to throw my head into a wall to try to make it stop. I feel a rage inside my head that makes me want to yell and scream in anguish. Then there are other days (and even times during the same day) when it’s all I can do to keep myself from crying. I drag myself through the day – work, kids, appointments, and household duties. But I just want to curl up in a corner and wail and bang my head. You don’t “snap out of it.” The best you can try to do is to power through it, to keep functioning. To hold on until you come out of that place where all you do is wish you would die, so the pain would stop.

People who have bipolar can’t be trusted/are sex addicts/take too many risks. Those who know that there are more than two states of bipolar have probably heard of hypomania. It’s an elusive state that causes people to get by with less sleep and still feel energetic. They often are highly productive and creative, as well as social and engaging. You’re probably thinking, That sounds pretty good to me! And honestly, quite a handful of people with bipolar wish they could always be hypomanic. The problem is that it can be very difficult to maintain a state of hypomania without surging into full-blown mania. And because it is a type of mania, it can cause problems on its own. You feel great, so you feel really attractive, and your self-esteem is a bit inflated. You dress provocatively. Your skin and senses are heightened. All these things can lead to hypersexuality. Judgment can be compromised. You put an entire summer wardrobe on a credit card. Some are seduced by gambling and risky investments. Regret can be a big part of having bipolar.

All people with bipolar are alike. People with bipolar are individuals who have a physiological disorder with their brain chemistry. But they are still individuals. Two people with bipolar can have completely different personalities. One might love drama and seek it out in his relationships. The other wants nothing to do with it and minds her own business. Some people with bipolar try to be positive and proactive about the disorder, and some are bitter and negative and uncooperative. Some people with bipolar lie and steal, just like some people who don’t have bipolar and lie and steal. Some people with bipolar cheat on their spouses, just like some people who don’t have bipolar cheat on their spouses. Some people with bipolar have terrible family relationships because of things they’ve done or because their family is unsupportive. Some people with bipolar cultivate loving family relationships and have a supportive family. And both of these scenarios happen in families in which bipolar is not present. Bipolar stereotypes are just that – stereotypes. There may be some psychological symptoms that people with bipolar have in common, which is how bipolar is identified and diagnosed, but even the characteristics of bipolar states themselves can vary from person to person (since it is a spectrum disorder).

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I didn’t ask my new friend what he meant by his reaction to my diagnosis. Some days I don’t have the energy to go into it, or I just want to finish my lunch and get back to work, or I tell myself, Maybe it meant nothing. Maybe he wasn’t sure how to react and that’s why his face went the way it did. Whatever the reason, it spurred me to write this post.

Thanks for reading it.

[Image courtesy of Medical News Today]

Avoiding the Pain of Misdiagnosis

Not the first time I knew I needed mental health help – but certainly the most memorable – was when I found myself rearranging the kitchen chairs for probably the tenth time by early afternoon, crying because I didn’t want to be doing it but unable to stop myself. It was a compulsion – hence Obsessive Compulsive Disorder. There were other things – systematically pulling out my hair, peeling the skin off the bottoms of my feet until they bled – that pointed to a significant problem. I had an incompetent counselor who referred me to one visit with a young psychiatrist, a woman slightly older than myself who looked at me, isolated at home with two very young children, one with special needs, and in ten minutes diagnosed me with depression and anxiety-related OCD. She prescribed a common antidepressant and a sleeping pill.

The good news is that I got help. The bad news is that I was misdiagnosed.

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Over 15 years later, as we near the end of Mental Health Awareness Month, I feel compelled to talk about how important it is to inform yourself so that you get a correct diagnosis. While it’s important to seek out help in the first place, it’s equally essential to educate ourselves about what might be going on. If you go in when you’re depressed, as most people do (albeit reluctantly), the doctor has no way of knowing about your college spending sprees and your convenient ability during that time (and maybe others) to not only get by on four hours of sleep a night for weeks or months, but feel fine with it, not only fine but energetic and productive, working three jobs and taking a full load of classes with absolutely no stimulants. Or, if you’re like other people, you might have been labeled a hot head (or worse) because you used to get into a lot of arguments and fights (even without alcohol), drove erratically for certain periods of time, or in the past you exhibited other symptoms (like hypersexuality) listed in books and online questionnaires.

Unfortunately many doctors I’ve seen don’t ask about your history of such things. You go in with a certain set of symptoms that indicate depression, and that’s what they treat. They ask you questions about your current symptoms and diagnose you based on that. They give you an antidepressant and two days later you go hypomanic, like, ohmygod I feel somuchbetter!! And in your mind, you are better, of course you are, because you’re no longer rearranging chairs around the kitchen table and crying and peeling skin off your feet. But what you don’t realize is that you went too far the other way. You will do things you wouldn’t normally do. You will make poor decisions and regrettable mistakes. And at some point, the churning inner turmoil will return. Because it’s not depression and anxiety. It’s bipolar.

So, this month and every month, let’s put the focus of Mental Health Awareness Month on awareness. If you’re at a point where you need mental health help, good on you for admitting it and seeking it. But do one more thing for yourself, one more really important thing – research. I recommend starting with Bring Change 2 Mind, Glenn Close’s organization. And don’t end there – keep clicking to other resources. Just as you would if you suspected you might have a physical illness of some sort, educate yourself about mental illness so that you can advocate for yourself. Otherwise you could end up suffering a lot longer, like I did.

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I lived with the cycle of not-so-healthy hypomania and debilitating depression for an additional 14 years before I realized I needed to find out myself what was wrong with me and then seek the correct treatment for it. It wasn’t until the second time that I read Manic, a memoir by Terri Cheney, that I was able to recognize I was in what’s called a mixed episode, and that I had been in one 14 years earlier when I had been misdiagnosed. I read other information on bipolar, and things in my past finally fell into place. Armed with that awareness, I took myself to a different doctor who had proper diagnostic tools and more experience. Even then, it still took a few months to find a medication that worked for me, but at least we were finally on the right track.

Don’t be reluctant to take health knowledge into your own hands. It’s your life. Awareness makes all the difference.

*image credit: newmentalhealthconnection.org

The Autism-Bipolar Link

IMG_0749I first became interested in the concept of autism and dual diagnoses (aka comorbidities, although the term is not used much these days, I’ve discovered) long before my autistic son was also diagnosed with bipolar. I’d been picking up on “rumors” here and there about the link between autism and other disorders in the family, that it was a pretty high percentage, and then I found an article online, one that appeared reputable (The Journal of Neuropsychiatry), that had been published in 2004. I’d wanted to write a post about it in 2010 (when I found it), but I didn’t want to sound too alarmist or bandwagonish. Why? Because the rate is 74%.

“In this study, history of major mood disorder (in first- and second-degree parental relatives) was assessed in 151 families. One hundred and eleven families (74%) had a history of major depression (in 102) and/or bipolar disorder (in 52).” Translated (the article is an abstract, very academic but worth reading), this means that of 151 families who were tested in several states over a period of seven years, all with at least one autistic child, 74% of those children had a parent or grandparent with bipolar or depression. Granted, there could very well be other variables affecting the results of the study, but I can tell you this – my family definitely falls in the 74%.

The article also describes a “subgroup” of children with autism as such: “Children with childhood bipolar autistic disorder . . . are initially diagnosed as autistic and subsequently develop cycles of mood disorder typical of bipolar disorder. This occurs within a family setting of major mood disorder, usually including bipolar disorder in family members.” Additionally, the article suggests that those with severe autism who are prone to self-injurious behavior also have bipolar, something I’ve thought about before.

And of course there’s the whole slew of anxiety-related disorders. Nigel over the years has been diagnosed with general anxiety, OCD, trichotillomania (which has affected him for 12-13 years), and excoriation. Anxiety-related co-occurrences (the apparent go-to replacement term for comorbidities) are the most common type of secondary diagnoses in people with autism and the type that was focused on at the recent seminar I attended: “Autism and Mental Health Dual Diagnosis.”

It was a very informative seminar, but as the presenter, Dr. Peter Nicholson, noted, it was “not a clinical conference,” so it was different than what I expected. What Dr. Nicholson focused on was the necessary cooperation of the various agencies involved, namely Developmental Disability Services and Mental Health. He commented on the funding issues, the “territoriality” among agencies. And there were a lot of agency people at the seminar! During a break, I turned to the woman seated next to me, having noticed earlier that she was a doctor at our county’s mental health department. I asked her a few questions about what she thought of the seminar and what she thought about dual diagnoses, disclosing that I have a son with autism and bipolar. Her answers were skillfully evasive in a patronizing way, I think because she felt “called out” by the presenter’s message – that MH needs to more willingly treat the needs of the autism community, with or without a secondary diagnosis. The doctor next to me was convinced that dual diagnoses, especially bipolar, are being over-diagnosed. She, with her over-processed hair, actually said, “We get kids with autism here, but there’s really nothing we can do for them.  We can’t just talk to them.” (!!!)

She claimed (I’m gritting my teeth as I type this) that too often parents view their children’s reactions to sensory issues – agitation, for example – as a symptom of mania and erroneously think that they have bipolar. She said this without knowing anything about Nigel, his age, or his history. This is partly why, even though he showed definite signs of bipolar at age 13, 14, and up, they waited until he was nearly 18 to diagnose him. They also wanted to rule out hormonal causes, which should not count as much when there is a definite family history of bipolar. These kids, and their families, need relief sooner than that. I even pointedly asked her, “What if there is a family history of bipolar?” and her answer was so blatantly evasive that I don’t even know what it was. Fortunately for her, the break ended and she didn’t have to deal with my continued efforts to get a straight answer.

So, I did learn a lot from the seminar, although it wasn’t what I expected to learn. Most importantly, I learned (or affirmed what I already knew) that county Mental Health agencies are reluctant to acknowledge dual diagnoses, even in the face of legitimate studies, obvious textbook symptoms, and family history. I also learned that we’ve got Dr. Nicholas on our side, and I almost cheered when he said to the agencies, “You gotta drop barriers – if your rules won’t allow it, examine why you have those rules.” Amen to that.

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw