Tag Archives: autism and bipolar

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

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.

When It’s Not Okay

I call my son’s name about five times to try to get his attention. He is clambering on top of a 5,900-foot high volcanic plug in southern Oregon called Pilot Rock. Everyone in our group has reached the summit and is walking around on the larger, more easily accessible area, but Nigel has opted to climb over to the more difficult portion, separated from everyone else, and has happily been there for quite some time. I continue to try to get his attention to let him know we are ready to start our descent, but he does not respond, even though I know he is well within hearing range. He is in his own world, verbally stimming. He is 18 now, and autism is alive and well.

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I haven’t posted for a while, and there are several reasons for that. I could delineate each of them, but there’s one that stands out.  It’s huge and it’s overwhelming. And it’s not talked about enough in the autism community.  It’s usually hidden, brushed under the rug, and denied, when really it’s the bear in the room no one wants to poke. Some of us with older children – young adults, even – are reluctant to talk about it outside of our immediate families because we don’t want it to affect our children’s (possibly soon) future plans and dreams (yes, I’m referring to myself). But maybe that’s part of the denial. If I don’t talk about it, maybe it will go away.

In the past year my sweet, gentle son has become aggressive. And I will not go into detail except to say that it has sadly gotten to the point where I have had to look at supported living options for him, in the event that he can no longer live with me. I hate writing this. But I feel that I must because I know there are other parents experiencing this, not knowing what to do. Feeling blindsided. Feeling alone. Asking why me?

The first thing to do, if you have not done so already, is to contact your local Developmental Disability services office. This is usually handled by the county, but it may be different in other areas. There may be an evaluation process to determine eligibility, so get started as soon as possible. Once your child is found eligible, you will be assigned a case manager who will work with you to discuss housing options and tell you what services are available, including a behavioral consultation that may help determine the underlying causes of the aggression and what to do in the short term to manage it. I also contacted our local police department to tell them about my son and to determine ahead of time what the procedure would be if he were having an aggressive episode and I needed to call 911.

The second, and equally important, thing is to try to figure out what might be causing the aggression. In Nigel’s case, it started about a year ago when we increased his anticonvulsant medication (because he was still having seizures). Each time we needed to increase the dose, he had an aggressive episode, and they continued to get worse. I didn’t make the connection at first, but after six months, I finally did. I did some online research – not just chat boards (although those were very helpful) – but also medical trial reports and studies. It appears that my theory was correct. However, I noticed that he had a couple of aggressive episodes not during a dosage increase, and I also noticed several other symptoms that I recognized as indicative of bipolar (since I have it). So I finally got his neurologist to start him on a new anticonvulsant, but it’s not yet at a therapeutic level for us to decrease the “bad” one. And I finally got Nigel in to see the county’s adolescent psychiatrist just last week. She said that autism and bipolar are often comorbid disorders. And after a thorough evaluation, he received a diagnosis of bipolar and was prescribed a mood stabilizer. Bipolar is often treated with anticonvulsants, but the doctor felt that Nigel’s case is severe enough to warrant additional medication. Furthermore, due to some anxiety and OCD symptoms, Nigel had previously been prescribed an antidepressant, which was no doubt causing manic episodes and aggression.

At the time of this writing, we are still very much in med-change mode, and we have not yet been able to decrease the first anticonvulsant, so there’s no change to report. But I do have one positive note to end on – that we obtained this additional diagnosis while he is still with me, so that I can get him the medication he needs, and above all, that he can feel better. Because to say that he has not been himself is a huge understatement. I know how awful bipolar has been for me, and the thought that his is worse than mine pains me greatly.

I realize that I may be criticized for writing this post, for exposing my son’s problem behavior. But I did not write this post for attention or sympathy, I wrote it for the same reason that I started writing and blogging about autism five years ago: to connect with other parents and help those in the same boat. Our children’s aggression is scary, bewildering, and very hard to talk about. But it’s often part of what we face as parents of children with autism, and we have to talk about it. We owe it to ourselves, and we owe it to our children.

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Eventually, Nigel noticed that I was summoning him, and he got down off the rock. But all the way back down the mountain and to the car, he strode on ahead of the group at least a tenth of a mile. He was argumentative in the car. And that night he had one of his worst aggressive episodes ever. I may never fully determine what causes his aggression; most likely there are multiple causes (sounds familiar, I know). But I will do everything in my power to figure it out and help my son. Autism has been our bedmate for quite some time. It’s still alive and well – but, with a few adjustments along the way, so are we.