Meet Dr. Insel, NIMH Director
A friend of mine shared on Facebook this link to Dr. Insel's TED talk, and I'm so glad she did. The video is only 13 minutes long, and it's fascinating. Click HERE to watch.
Dr. Insel's bottom line is this: Early detection – early intervention is the key to success.
Dr. Insel starts his talk by giving some statistics related to the advances made by the medical community in treating diseases like leukemia, heart disease, AIDs, and stroke. These advances he links directly to early detection and early intervention.
Then he gives statistics related to suicide. As of this talk in 2013, the number of suicides per year was a staggering 38,000 or one death every 15 minutes, making suicide the third most common cause of death of people aged 15 – 25. Ninety percent of these deaths were attributable to mental illness. These figures are not decreasing.
He goes on to discuss that 30% of all disability is related to mental illness and the main factors for why this is so. One factor is that mental illness generally starts early in life. Fifty percent of mental illness develops by age 14 and 75% by age 24. This early onset is a key difference between mental illness and the other diseases he mentions.
He says, "We are about to be in a very different world." Well, I sure hope so, but what does it mean? He purports that we need to look at mental illness in a whole new way, moving away from old labels like "behavior disorder." Anyone who lives with mental illness or loves someone with mental illness knows that it is true that behavior changes dramatically over time and leading up to a diagnosis. The problem is that the moniker doesn't express the depth of the underlying cause of mental illness, what Dr. Insel calls the "human connectome" or how our brains are wired. People who struggle with mental illness have detectable variations in the way their brains are wired. But here's the thing: Behavior is the last thing to change in someone with mental illness. That means, in our case, that long before my daughter started refusing to eat and throwing away her lunch, and hurting herself physically and screaming at me, and losing herself in fits of despair, rage and sadness, her depression had been brewing under the surface for quite some time. How long? Who knows. I often wondered if there were childhood markers in her behavior that I missed. I'm sure there were. I don't beat myself up about it because no one else saw them either. There's so much more work that needs to be done.
Dr. Insel ends his speech by saying, basically, that this is where the work ahead of us is. He says that we don't yet know what the tools will be or what to precisely look for in the brain before the behavior emerges as different, but we are beginning to make progress. I, for one, wish progress would hurry up.
Now. Why am I regurgitating facts and figures that you could simply have watched in the video? Because of one little word that holds big meaning for every parent – including me — that I've met on my journey of learning about, living with, and loving someone with mental illness: LABEL.
When my daughter first got sick, I didn't want anyone to know for fear of how she'd be treated once she got labeled with mental illness. In today's judgmental society and with the stigma that surrounds mental illness, my concerns were, of course, valid. Every parent I know that has contended with school district personnel or treatment professionals — for any kind of concern be it mental illness or learning disability or what have you — has encountered some less than stellar results. Then my daughter got sicker, and I became desperate. I didn't care who knew what as long as everyone knew something and was participating willingly or otherwise to help me help my daughter get better. Finding the middle ground might have been a better idea, but we do the best we can under the circumstances we find ourselves in. Fear can be a benefit, it's the yellow caution light that warns us danger may be near, and that we should take care. In general, however, making decisions from a fearful frame of mind is not advantageous: We are more likely to overreact and under think. Most of the professionals out there sincerely want to help, but there are as many opinions on treatment, it often seems, as there are clinicians. And whether we like it or not, treatment is based on symptoms which generate a label which generate a treatment plan.
There are steps we can take to alleviate our fears like getting educated, speaking to and learning from other parents who are facing what we are, and being honest by discussing our concerns with our child. We can develop a plan that addresses the main concerns and plot possible courses of action. We must advocate on our loved one's behalf; sadly no one else will.
Again, why do I bring this up? Because, when we're faced with the reality that our child is sick, that he might need more help than we can provide, that she might be singled out and possibly ostracized, that we, as parents, may feel embarrassed and insufficient and ashamed, we must still find a way to conquer that fear and move forward. I've heard stories about parents who don't or won't take advantage of what the system has to offer because of these fears. Let me tell you, if we don't take advantage of available resources when they're young, we waste valuable time during which treatment could be making progress huge leaps toward recovery. Plus, if our child turns 18 and says she doesn't want or need our help, we're screwed. Privacy laws will stop every one of your best intentions in its tracks.
I've said before that we have to find our gratitude where we can. I am grateful my daughter's behaviors emerged as early as they did. She was 13. I'm 100% convinced that we owe her recovery — in largest part — to early detection and early intervention. I don't mean this to imply that there wasn't an unbelievable amount of hard work on her part and ours, but had she not gotten sick as young as she had and had we not intervened as quickly as we did, and used the system as much as we could, I may not have ended up writing these words to you from where I am — enjoying watching my daughter join her friends in school every day, getting good grades, participating in sports and just being like any other 16-year-old. She did, in fact, face some discrimination. Mostly from cruel and despicable kids at school, but these memories pale in comparison to her achievements.
I understand how terrifying the prospect of a label is, and how we physically ache as parents for our children to succeed. Sometimes we're forced to put our expectations — of what we thought, dreamed, prayed, and hoped our children's lives would be like — aside. This is incredibly painful, but we can't let grief stop us. The outcome, if we do, has the potential to be more dire than hurtful labels.
For more information on NIMH, click the link below. You can check out Dr. Insel's blog and research mental illness by disorder. There's a wealth of information on everything from research to treatment to advocacy to outreach to webinars to information on how to participate in clinical trials. I've also included a link to Minnesota's Great Start initiative. The state is leading in the way in early intervention and detection.
That's my two cents. What's yours? Have you ever feared a label of any kind? What did you do?
I feared just saying the label "mentally retarded." Saying those words was taboo in my house when I was growing up because that was what the doctor labeled my older brother as. Its connotation was so awful in my parents' minds that to utter those words risked my bottom being spanked or my face getting slapped. Believe it or not, I couldn't say those words aloud until I was about 35 years old!
Have you heard of the "euphemism treadmill"? Look at how labels have changed over the years for someone with a low IQ.
My brother, born in 1958, was diagnosed with "mental retardation" as a baby. Older words like cretin, idiot and imbecile had already gone by the wayside, already being viewed as offensive. These terms didn't start out as sounding offensive. They were meant as labels, like diagnoses, surely to help parents & teachers understand the challenges to be faced. The word "cretin" stems from a French word meaning Christ-like, to denote that people with mental or physical problems deserve respect like everyone else. But a word used to describe someone with a mental problem then becomes a word to throw at anyone, as an insult. So a new term is substituted in.
As I grew up, I came to understand that "handicapped" was an acceptable term, and later on, in my teen years, "developmentally disabled" was the newfangled term used around the house.
Later, the terminology drifted to "special needs" and "learning disabilities" and now I believe the correct phrasing is "intellectual disability." OMG! No matter what you call the brain damage my brother suffered from, it was what it was. It was only the stigma that came from other people's cruelty that forced the nomenclature changes. (My brother died in 2009 so I'm not necessarily up to date on the euphemism treadmill).
If people were educated and compassionate, words wouldn't become labels that have stigma attached to them. You can pretty well bet that any new label for an old condition (barring a whole new scientific input on causation, I suppose) means stigma is alive and strong for that condition.
But, we need labels, or diagnoses. If someone needs help, a label/diagnosis is the starting point for getting the treatment and help needed. Avoiding getting a person labeled could result in a loved one not getting treatment soon enough, if ever.
Stigma be damned. I agree with you, Tracey. People need to get the help for themselves or their loved ones. It's the best plan for moving towards a happier, more fulfilling life. We have to hope others who haven't dealt with mental illness or "intellectual disabilities" will be compassionate, and teach that to their children.
Thank you for sharing this difficult and very touching story, Susan. And thank you for the information. I had no idea how the labels for retardation had changed over the years. How awful for you, as a child, to be punished for commenting on only what was the fact before your young eyes. My daughter doesn't have siblings close in age, so we didn't have the concerns and difficulties that many many families have in juggling the treatment of mental illness of one (or more) with others in the family who are not ill. Plus, then having to work and run errands and take care of the stuff of life. It's all complicated. But to your point -yes. Words can hurt. Words can be painful. Words can be a wedge between us and those we love. Words can divide. They did all of these things and more on our journey through my daughter's recovery. It took a lot of practice, but eventually, words also started to help us conquer and to heal. That's why the work that NAMI and organizations like it does is important. Information changes minds and in so doing it changes words. Labels can surely hurt but they just as surely help us heal.