The Autism-Bipolar Link

Posted on May 1, 2013 by Tanya Savko

I 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 DD 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

Posted on November 15, 2012 by Tanya Savko

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?

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.

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

When It’s Not Okay

Posted on October 30, 2012 by Tanya Savko

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.

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.

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.

Tired But Wired

Posted on July 26, 2012 by Tanya Savko

Stress over $16,000 bill from USDA? Check. Erratic sleep schedule? Check. More-than-moderate alcohol consumption? Check. Hypomanic episode? Done.

I got back from the concert feeling pretty ramped up. Earth, Wind & Fire were awesome! We had a great time! I felt so full of life and energy, and at 11:30PM I texted my boyfriend, “I’m not even that tired!” A half an hour later I tried to go to bed, reminding myself that I had work in the morning, and as I lay in my bed, head on the pillow with my eyes closed, it hit me. I felt a familiar but unwelcome whirring in my brain, and I knew: I was hypomanic. Uh-oh.

For those not as well-versed in bipolar terminology, hypomanic literally means “below manic,” meaning mild- to moderately manic. It’s how I usually experience the mania part of bipolar, which determines my diagnosis of Bipolar II, instead of Bipolar I, which includes full manic episodes that can cause major life disruption and can result in hospitalization. So that night I had the luxury of knowing that I wouldn’t get out of control along with the dread of knowing I would not sleep that night and probably the next, no matter how tired I was, no matter how thoroughly I cleared my mind, and no matter what medication I took, short of something a hospital might administer.

I knew it was pointless to fight it, but I still felt compelled to run through my mind-clearing meditation and try deep breathing. And actually my mind cleared rather quickly, since I have a good deal of practice in that area. My mind, with all of its musings, plans, thoughts, and analytical ramblings, is under my control with little effort. But my brain is at the mercy of my neurotransmitters.

I used to experience insomnia when I had depression and would toss and turn in bed for hours, letting my mind wander. It took me years to learn to rein it in, to train it to let go of all conscious thought and allow myself to sleep. But during times of depression the neurotransmitters do not make the brain whir, this constant sensation of being switched on, even if you are exhausted. During hypomanic episodes, my tactics of clearing my conscious mind still work, and then I’m left with a wired brain that keeps whirring all night, even going so far as to produce random, racing thoughts that I do not recognize. Words and images flood my brain, and I don’t know where they come from. It’s almost like I’m in someone else’s head, trying to make sense of their day, their memories, when I have no idea what they’ve experienced. And no amount of mind control makes it go away. Prior to my diagnosis and being put on medication a year ago, my brain would go so far as to cause auditory hallucinations during these episodes. Not voices, but sounds that my subconscious knew would disturb me, since I was already unable to sleep. You know, adding insult to injury.

This week was actually my first hypomanic episode since starting my current medication nine months ago, and I figured (hoped) that the medication would keep it in check. I was right – I only had two nights of disturbed sleep (and the second night responded fairly well to some OTC sleeping medication, surprisingly) instead of the usual four nights or more. My brain unwired itself more quickly than before, and I am nearly back to “normal.” I’m also more determined to keep a closer eye on my triggers – stress, irregular sleep patterns, and not keeping alcohol to a minimum. Awareness, as with any difference, leads to understanding.

I can make jokes about it, like making a hypomanic episode sound like an ad, because humor is what gets us through the day, through our often overwhelming lives, but I never lose sight of the fact that bipolar is a typically misunderstood, mystifying disorder that can cause real misery as much as perceived elation. But sometimes, if you’re lucky, the elation is real too, and life is good.

A Different Kind of Help

Posted on September 6, 2011 by Tanya Savko

“It is one of the beautiful compensations of this life that no one can sincerely try to help another without helping himself.” – Charles Dudley

“On a spiritual level you will experience a different mode altogether. Your attention should turn to others and their needs; find ways to be of help and give time and energy to worthwhile causes. You must lighten your burden of questions and doubts and the best way to do so is by directing your attention to another direction, away from yourself.” – from my numerology report for 2011

A few years ago I was into numerology – numbers don’t lie, and all that. I’m not sure that I really believed all of it, but I did notice some uncanny coincidences in the reports I would find online and where I was in the epicycles. That part definitely resonated with me. At the time, Tarot.com offered numerology reports two years in advance, and I downloaded my report for 2011 long before the last decade was over. I read it and filed it away, and then around February I cleaned out some files and found it.

At first, the part about helping others perplexed me – selfishly I thought, if anyone needed help, I did. I knew I was depressed and, after over a decade of single parenting, I feared a complete breakdown. I stopped blogging and spent a lot of time watching X Files episodes with Aidan. And then my dad’s cancer accelerated, and with my siblings, I took care of him in his last weeks, days, hours, and minutes, and I thought, Ah. This is what the numerology report meant by helping others. I returned home a different person.

But I still didn’t feel like that was it, and my attention turned inward again as I grieved for my father and tried not to think about the fact that my 15-year-old son had decided to live with his dad, 700 miles away. Shortly after his birthday, Aidan flew back here with Nigel, and we enjoyed a short, four-day visit with him. I took some time off work, and we went to Crater Lake, where my mom is an Interpretive Ranger. We spent time with my sister, my niece and nephew, and had dinner with my aunt and uncle. We watched some more X Files and Aidan showed me the ropes with my new iPod. And all too soon I found myself driving him to the airport, going through the motions of waiting in line to check his bags and get my pass to accompany him to the gate. But because he is now 15, they would not give me a gate pass. “He just turned 15 last week!” I pointed out, wielding his passport. “He’s my son, and I’m not going to see him for over two months!” I pleaded, aware of the fact that I was probably embarrassing him. I knew that he would be fine on his own, but I really wanted to wait with him at the gate. They spouted off something about policy, and I turned away, willing myself not to cry. I took a deep breath and motioned Aidan over to some seats near the line waiting to go through security. We sat down and I told him that I had a letter for him that I had wanted to give him at the gate before he boarded, but that I would have to give to him now. I handed it to him, and he opted to read it right then, so I sat there as he read the words I had so carefully chosen to tell him how much I loved him, that I unreservedly supported him in his decision, and that if he ever changed his mind I would be so happy to have him back. He thanked me and hugged me, and then we waited in line, my heart in my throat, trying not to be angry at the airport personnel. When it was time, I hugged him tightly, breathed in his scent, told him I loved him, and kissed him at least five times. “I love you, Mom,” he said as I backed away, trying to smile.

I watched him as he went up to the counters, put his jacket and shoes in the gray plastic trays, took the full-size X-Box game console out of his roller as instructed by security, walked through, and efficiently repacked everything on the other side. He’s been in airports more times by age 15 than I had been by age 30. He’s a pro. I watched him sling his messenger bag across his chest, check the monitor to see which gate to go to, pull up the handle on his roller, and head off. I was so sad – yet so very proud – all in the same moment. I knew I had helped him by letting him go with love.

Back at the house, Nigel and I had dinner together, just the two of us at the table. We talked about how strange it would be with Aidan gone. We watched a movie together, and then Nigel opted to build some Lego. I wasn’t sure what to do with myself. I sat down on the couch with a National Geographic magazine, and, as if on cue, the phone rang. It was one of my good friends, another long-term single mom, who had been out of work for several months. She, with her daughter, had been living about three hours away in a larger city, trying to find work. She ended up losing her house and her car and decided to come back to southern Oregon to temporarily stay with friends-of-friends whom she did not know well. It turned out to be a negative environment, so I went to pick them up the next day, and my friend and her 12-year-old daughter came to live with us.

Nigel had been asking me for three years to let him have the much larger “game room” (as we call it), where he keeps his massive Lego collection, for his bedroom, and he was ecstatic to move his things out there so that T’s daughter could have his old room. I moved my desk out of the office and into my bedroom so that T could have the office as her room. Within days of being here she has lined up two job interviews and, through another friend, a car fell into her lap yesterday. I know she was meant to be here.

I also know that this is more of the help I’m meant to provide for others this year. That’s obvious. But the truth of the matter is – and I have told her this several times – that her being here is helping me just as much as it’s helping her. Nigel is benefiting immensely by having a friend in the house who matches his current emotional age. She’s a sweet and insightful girl who is happy to watch movies with him and patiently listens while he narrates whatever they’re watching.

And then there’s this – I never realized how much I would benefit from having a nurturing adult in the house, after all these years of going it alone. I never realized how much I needed her here until she came. I just wanted to help out a good friend in need. But the fact is that her mere presence has calmed my spirit and “lightened my burden,” just as my numerology report said it would. I suppose it’s a no-brainer that in helping others we help ourselves, but I never knew just how true that is until now.