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.
Being 18 is pretty cool. You can do a lot of things now – you can vote, of course, and if you did not have epilepsy or the developmental delays caused by autism, you could enlist in the military. But you can have your own eBay and PayPal accounts. And you can get a tattoo or get married. You can buy a lottery ticket!
family reunion at Beckman Winery
Nigel hanging with his guru
Sometimes, echolalia was a gift. At age four, Nigel didn’t have his own spontaneous speech, but he could occasionally parrot back phrases he deemed important. Once in a while when I said, “I love you,” he would say, “I yuv ooo” right afterward. And I treasured that phrase and held onto it. Because when the echolalia stopped and the delayed echolalia (or scripting) began, I never heard it again. Once, when he was 14 and saying goodbye before visiting his dad, he said it. But every other time when I would tell him I loved him, he would say, “Same to you.” When I dropped him off at school for years, and then when he started riding his bike in high school and walked out the front door in the mornings, and I said, “I love you,” he said – often irritated – “Same to you.” I wondered if this was the best that I could hope for.
I didn’t learn to swim until I was 9 or 10. I’m not sure what the reasoning was behind that, especially since, growing up in southern California, I was surrounded by beaches and pools. But it might have been even before I learned to swim that I learned how to jump waves in the ocean. I loved how the motion of jumping would lift my body over the swell, just floating up and over it. And then came my favorite part – being up to my shoulders in the ocean, I would move with the tide as it rhythmically pulled and pushed me, back and forth, outside of my control. I felt soothed and at peace. In the ocean or in life, I learned early on to go with the flow.