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. Neil 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 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 Neil, 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.
How frustrating. Seems like they’re more concerned about CYA than actually helping people! I hope Neil’s doctor has better sense than that.
Amen to that, and boo on the skillfully evasive!!
I think agencies the world over are reluctant to accept anything that means they have to deal with it! They’ll chose the option that allows them restrict services 🙁
This post has come at an interesting time for me. Can’t blog about it but basically as my mam has bi-polar from a young age I’ve always kept an eye on my boy as he has grown up. I’m aware of the connection between Autism (ASD) and mental health. I’ have only recently linked his ‘headaches’ and general ‘unwellness’ to anxiety/stress. I need to deal with this now. I will MAKE myself heard. I will GET services/help 😉
And I’m bookmarking this in case I need to quote from it!
Thank you.
xx Jazzy
What a great and informative post
that woman would totally have set my teeth on edge as well
Wow, for Dr. Nicholas. It is so good to be reminded of the good doctors out there. Bless his heart.
Thanks, Lex. Unfortunately Neil’s doctor is in the same agency, which is why we had to wait until he was nearly 18 for his dual diagnosis. I’m hoping that with more exposure, more parents speaking out, they’ll realize that it needs to come sooner.
Thanks for your input, Jazzy, and cheers to you for being proactive!
My son is 10, and has Autism, ADHD, ODD.. I have been concerned for quite some time now that we’re also dealing with a mood disorder.. been pushing for a true psych eval for some time, but it’s been very difficult to get one- even from an actual psychiatrist. Am losing my mind because despite everything, anger has been a problem since he was real little, so why do they hesitate so much to do one? Glad I found this blog, and thanks for the link to the article.
Thank you for your article and for your courage in confronting these gatekeepers.
My question is whether anyone has access to an article about intellectual disabilities and bipolar disorder?