10/08/2012 12:04 EDT | Updated 12/08/2012 05:12 EST

What I Wish I Knew Before My Daughter's Psychotic Break


Now that Mental Illness Awareness Week (MIAW) is over for another year, how many of you learned about the early warning signs of schizophrenia and bipolar disorder?

Or the Early Psychosis Intervention programs that offer the best help? Since over 3 per cent of the population will develop these disorders, usually in adolescence or young adulthood, it's useful information.

It's not an oversight that you probably didn't receive this basic education about psychotic illnesses. The Canadian Alliance on Mental Illness and Mental Health (CAMIMH), the sponsor of MIAW, has clearly been guided by social scientists interested in de-medicalizing mental illness in its public education campaign.

Their 2008 National Integrated Framework for Enhancing Mental Health Literacy in Canada (p.7) reveals the dubious notions that are now influencing how we are supposed to think about mental illness literacy:

There is a tendency among professionals to assume the mental health literacy of the public will increase as it aligns with professional thinking, but there are many reasons for caution about adopting this approach...

The Framework then warns about this approach, because "its emphasis on medical perspectives...can be associated with disempowerment, pessimism, and increased stigma."

Since these particular illnesses are now considered to be medical disorders by the medical community, it would make sense for a public education campaign to let us know what "professional thinking" is about these brain disorders. Limiting the dissemination of medical information on psychotic disorders actually leads to the "disempowerment, pessimism, and increased stigma" from which we're presumably being protected.

Parents who don't understand the strange behaviours that accompany psychosis are completely disempowered. Delays in getting treatment do lead to poorer outcomes, so there's reason to be pessimistic when trends in social science dominate the distribution of knowledge about medical illnesses. And the more the public witnesses the disturbing behaviours of people with untreated psychosis, the more stigma they will have about all people suffering from mental illnesses.

Currently, the strongest component of Mental Illness Awareness Week is its Faces of Mental Illness program, which profiles five Canadians who have battled a variety of mental illnesses and gone on to build very productive lives.

One of those people profiled this year is Vancouver author and artist, Sandra Yuen MacKay. Sandra has worked for years with the B.C. Schizophrenia Society to educate people about psychotic disorders. Her memoir, My Schizophrenic Life, The Road to Recovery from Mental Illness, provides an informative account of the frightening intrusion of this illness into her teenage years. Fortunately, Sandra's parents eventually were able to get her into a local hospital where her illness was diagnosed.

In a recent conversation, Sandra mentioned that if education about psychosis and if Early Psychosis Intervention programs had existed when she became ill, she might have received appropriate treatment much sooner.

Last year Sandra participated in a workshop I gave for the B.C. School Counsellors Association on how to better support students who develop psychotic illnesses. In discussions with these counsellors, it was clear that they really wanted to understand these disorders, which they hadn't learned about in their previous training. Although many were working in schools in and around Vancouver, where good Early Psychosis Intervention programs have existed for over 10 years, few knew about them.

It's not surprising that many school counsellors haven't heard about these programs. Even though in B.C., we have an excellent plan describing how EPI programs should operate, appropriate funding hasn't been allocated. At the same time that this plan was being unveiled, for instance, Vancouver's Early Psychosis Intervention program lost funding for its EPI Educator position.

This outreach worker went into the community including secondary schools where she taught counsellors how to recognize the early signs of psychosis. Counsellors also learned how to easily connect students to EPI for psychiatric assessments that are otherwise very difficult to obtain.

One of the many beneficiaries of Vancouver's EPI program is Tracy Windsor, a very articulate young woman. As Tracy says, "EPI has been the backbone of my recovery from bipolar disorder. Without the staff at EPI, I believe I would have fallen years behind in my recovery."

Tracy now shares her story through the Mood Disorders Association of B.C.'s Lowdown program. As well, she supports students with mental illnesses by coordinating the Kaleidoscope program at the University of British Columbia.

Students struggling with psychotic illnesses they don't yet understand are fortunate if they connect with a group like Tracy's. They might instead wander into a workshop like the ones offered recently by the Mad Student Society at the University of Toronto and at York University on Resisting Mentalism: Becoming an Ally to Mad People and the Consumer/Survivor Community.

Informed by contemporary social science theories, this group wants to help students who "have been labeled with 'mental illness' diagnoses," a process the Society refers to as mentalism or saneism, to challenge "the medical model understandings of madness."

I wish public education about the "medical model" perspective on psychotic disorders had been much better 14 years ago when our younger daughter began showing signs of what developed into a severe schizoaffective disorder. Our ignorance led us to choose a therapist who has a MA in Counselling Psychology. She trained in a program at a major Canadian university that neither offered nor required curriculum on psychotic disorders. This crucial mistake on our part led to circumstances that meant our daughter unnecessarily experienced a two-year psychotic episode.

One of the sad benefits of writing a memoir about these experiences has been to receive messages from other families who are continuing to make the same mistakes we made. The one national public education campaign that we have about mental illnesses isn't helping. Early Psychosis Intervention isn't even a topic listed on CAMIMH's website.