Why are people with Aspergers’ syndrome considered mentally ill?

I just don’t get why Aspergers is categorized as a mental illness. It’s in the Diagnostic and Statistical Manual, so it must be, but I still don’t get it. I “get” why schizophrenia is considered a mental illness, although I don’t agree with labelling it as such. It’s all so confusing, really.

Here’s a story from the Ottawa Citizen about a mother who is not able to hospitalize her son because the Asperger beds are full, but there are spaces at the hospital if you fall under another mental illness category. Note that Aspergers used to be something rare. Now, by bed count alone, it appears to have overtaken traditional “mental illnesses” like schizophrenia in a spectacularly short period of time.

The real reason for being admitted to mental health facility may simply be that your family can’t deal with your behavior any longer. In the absence of helping the whole family find a better way of coping, the one with the label gets time out in the institution and the ones without the label get time out at home.

Unconditional love

I’m reprinting this extract of Grainne Humphreys own story of renewal which was posted today at Beyond Meds. I urge you to read the post in its entirety because it shows you how recovery without drugs looks. Recovery without drugs looks very weird, but if more people were aware of the breakdown and renewal process, perhaps there would be more understanding that this is something that people have to go through, and they can do it without unnecessary recourse to the heavy duty artillery of drugs and doctors.

That being said, Grainne writes about how difficult it was for her family to be round-the-clock crisis managers. I can identify whole-heartedly with this, because I was emotionally and physically exhausted from being on call 24/7. Had the decision been mine alone, Chris would never have been placed back on medication. In this respect, it appeared easier for Grainne to have a drug free recovery, since her mother seemed to be the sole decision maker here. No messy arguments with a spouse over medication, no ultimatums.

Grainne attributes her healing to unconditional and unwavering love . I would like to stop here and reflect on that. Let’s assume that it is normal for a mother to love her child even if that love is imperfectly carried out. It is the conditions that we place on others that cause them and us stress. I think family members can bring about the kind of healing that mental trauma needs if we simply stop judging the other person and have the confidence to let them get on with their own growth and rebuilding in their own time in a controlled setting.

The things that healed my mental distress were the unconditional and unwavering love of my mother, my family and friends and the community I lived in. I was kept safe by this body of people. I am blessed with a tolerant and very loving family and a tolerant and loving community, something which to this day I do not take for granted. I now recognise this as a privileged position to be in. My mother and my step-father, Sue King, Carol James and Giana Ferguson being a few of my hands-on 24/7 team, taking it in shifts to be responsible for me, keeping me housed and fed and, if possible, occupied. My mother wanted to keep me out of hospital and off medication. The reality of this is her home became an acute crisis centre and I was a major disruption to the quiet routine of their lives. Obviously, this is not an ideal situation and it would be wonderful if there were places people could go that did not force medication on you if you didn’t want to take it to prevent the medicalisation of what is essentially a human experience. In the beginning I needed round-the-clock attention as is the case with anyone in an acute crisis and when this experience is not blocked or suppressed with drugs it is an enormous work-load for those involved. Saying that, my short time in hospital further down the line was not a bad experience – I was admitted after a suicide attempt – however, I later discovered that I could have been discharged but I was kept in to give my mother a break. In effect, for her mental health. This gives you some indication of the strain she was going through. No doubt, I was lucky that the psychiatrist who worked at my local hospital at the time I was admitted was progressive and humane. I escaped labelling and drugging, though I know this was down to luck and circumstance and who took care of me during my crisis.

My manuscript is available

These days my blog is taking a back seat to my efforts to tidy up the memoir I am writing. I belong to a local writers group who has arranged for members to show a sample of their work to a live literary agent in mid-February. The reason I am writing a book about Chris’s and my experience with holistic healing is because a book is often the best way to get your message across to a lot of people. Even regular readers of this blog may forget the back story or are not able to trace the reason why I believe certain things about recovery. A book follows a logical path and is a handy reference guide.

I’ve placed my nearly completed book on the authonomy website so that anybody can read it and comment on it. Authonomy books are not so easy to read on the screen and, unfortunately, book chapters cannot be downloaded and printed. But it’s there if you would like to get Chris’s and my “back story.”  If you do go to the site, it would be helpful for me if you registered an account and then placed my manuscript on your bookshelf. Your doing so will create a wider audience for my message. Registering your account doesn’t mean you will be flooded with e-mails from authonomy; in fact I rarely receive them.

I have another book suggestion for your shelf. A Moment in Time effortlessly weaves together today’s high level of interest in “new age” dynamics, quantum physics, alternative healing, and the backlash against “Big Pharma.” Set in the late 1990s, it describes the global paradigm shift that is currently under way and follows one woman’s struggle to adapt to change. Her experiences place her at the forefront of new understanding about quantum realities. If you liked The Celestine Prophecy or Dan Brown novels, you’ll find this one promises to deliver much more. 

Need a good laugh?

2011 NAMI Convention: Need A Good Laugh? is the subject header in the newsletter I received today from NAMI. Imagine my thrill when I saw that the first newsletter item was Anosognosia. I thought to myself, prematurely, as I discovered, that NAMI has finally figured out what a crock its belief in anosognosia is. Well, as you can see, anosognosia to this organization, continues to be no laughing matter.

Dealing With Anosognosia

Anosognosia, or the inability to perceive that one is ill due to impairment to the brain’s ability to process certain data, will take center stage at the 2011 convention.

Dr. Xavier Amador, who spoke on anosognosia to a standing-room only crowd at last year’s convention, will return to address the subject again on Friday evening, July 8. Anosognosia has been identified as the single biggest reason why some people living with schizophrenia and bipolar disorder do not seek treatment or do not comply with prescribed treatment.

Dr. Amador, a clinical psychologist, professor at Columbia University and founder and director of the LEAP Institute, will address this thorny problem, explain how it differs from denial or simple stubbornness and help family members and others begin to learn how to deal with it.

NAMI, a collectivity of hand wringers which could stand a good injection of laughing gas during its conventions, takes up the serious matter of laughter as newsletter item 2. I’m bored already.

Need A Good Laugh?

Debbie Ellison, certified laugh yoga leader, will present a special session at the 2011 NAMI Annual Convention on the benefits of laughter for individuals who live with mental illness. In this fun, hands-on session, you’ll learn how laughter:

increases the “happy” chemicals in the brain and fosters a positive and hopeful attitude;

decreases depression, stress and negative thoughts and feelings;

improves many chronic medical problems; and

makes you feel good.

The session is part of the convention’s Wellness Center–information and activities designed to increase well-being.
Notice (above) that NAMI likes them certifiable.

Collective insanity

Here’s an interesting perspective by Washington Post columnist Courtland Milloy on yesterday’s State of the Union address.

To one degree or another, the nation appears afflicted with “generalized anxiety disorder,” which the NIMH says shows up as “exaggerated worry and tension, even when there is little or nothing to provoke it.” . . . My fellow Americans, ask yourself: How strong can the state of the union really be if our minds are so unsound?
Note to readers: Most of you are located in North America, specifically the United States, which is why I don’t bother to explain what the State of the Union speech is. I don’t have any political affiliation, and I’m not even particularly interested in US politics. I like to pick and choose what is interesting to blog about and I don’t endorse any one political party. (Like the old joke, it only encourages them.) I used to be very involved in politics, both as a paid worker and as a volunteer, but that was then and this is now. My passion these days is schizophrenia. Seriously, that’s about it.

What’s the rush here?

F.D.A. is Studying the Risk of Electroshock Devices

Extract below from the New York Times

“It’s a treatment for the most severe form of depression,” Dr. Kellner said. “It can really be life-saving.” … The treatment costs $1,000 to $2,500 a session, and typically involves three sessions a week for two to four weeks, Dr. Kellner said. The fee includes the services of a psychiatrist and anesthesiologist. The equipment itself costs about $15,000 and may last years.

Hmm. When doctors like Dr. Kellner say electroshock treats the most severe form of depression, this raises questions with me and it should raise questions with others. When I think of someone suffering from “the most severe form of depression” it brings to mind someone who has a long history of depression who is perhaps suicidal. This person has exhausted all other forms of treatment and has discussed the pros and cons of electroshock at length with their doctor.

Here’s a more likely scenario for administering electroshock, based on what happened to us. A young man (e.g. Chris) is admitted to hospital for first episode psychosis. He does not have a history of depression. He is put on respirdal or some other antipychotic along with a tranquillizer. He, at some point within a short time of being admitted, falls into a psychic slump and begins to ask existential questions. Maybe he is told, like Chris was, that he can resume his classes while checking in at night to the hospital. He quickly figures out he can’t cope with classes, leading to feeling, well, depressed. Perhaps his family is an ocean away (as we were) and suddenly, life begins to really look black. He refuses to eat. The doctors call the parents and say that they will administer electroshock if things don’t improve. Being clueless about electroshock, they readily agree. Nobody informs the parents that electroshock is still considered controversial.

All of this happened within a month of Chris entering the hospital with no history of depression. One month! Not a lifetime of struggling to cope with the worst of depression. Situational depression I would call Chris’s case. As it happened, somebody spoke to him and he perked up enough to avoid electroshock. What was also avoided was the insurance bill, which, according to this article, would have run anywhere between $6,000 and $20,000. For what? For something that human concern could have cleared up for free?


Postlude: For behold, darkness shall cover the earth  (G.F. Handel) Soloist: Christopher Forbes

On Sunday Chris sang the Postlude in church, accompanied on the organ by our choir director (his voice teacher)

This is a lengthy, difficult piece. He got a standing ovation.

Two weeks ago Chris had a one hour telephone counseling session with career intuitive Sue Frederick. Blending numerology, astrology and her own intuition, she introduced the idea to him that he was, among other things, a non-traditional healer and suggested several scenarios that he should consider: Acting, healing, sound therapy and psychology. She’s big on using your pain as your fuel. She could definitely see him on stage.

Then, seemingly out of the blue last week, Chris’s sound therapist called to ask Chris if he would be interested in enrolling in his new course in sound technology. Of course he would! Last week Chris also attended the first rehearsal for Gilbert and Sullivan’s Trial by Jury. He’s in the chorus.

Chris gets discouraged at times because he thinks that he doesn’t know what he wants to do in life and life is passing. He’s thinking he’ll never catch up. I suggested that he drop the pretext that he is not on his life path and consider the evidence that he is already on it and has put years into it.  I’ve suggested to him to stop worrying about making money through traditional career choices, but that he should consider upping his game by taking more voice lessons and maybe some acting lessons.

Here’s a recap for newcomers to this blog. In my blog I try to convey a positive message for parents whose child has been given a diagnosis of schizophrenia. The road through recovery is often longer than we would hope, and there are ups and downs. Chris is now 27 years old. He did not finish his undergraduate university program. He left university seven years ago and has been living at home ever since. He doesn’t have have a job. So far he has activities.

If you are new to schizophrenia, seven years seems like a long time not to be employed and to be living at home with Mom and Dad. This is probably not what you are hoping to hear. Some people recover relatively quickly using megavitamins, but a lot do not. There are many complicating reasons why instant recovery does not happen and my blog demonstrates many of these reasons. For people like Chris, and very likely your son or daughter, recovery takes time, a lot of time. I learned the hard way what happened to Chris when I grew impatient with his progress. I delayed his recovery through my impatience.

In order to do right by recovery, rather than focusing on a timeline, think of your child and yourself as embarking on a long, but exciting journey. Getting it right can’t be rushed.

The Singing Detective

One of Ian’s and my favorite films is the 1986 BBC television series The Singing Detective. Mystery writer Phillip Marlow  is victim to a gruesome skin disease, the psychological origins of which go back to his childhood. He’s suffering from writer’s block and has landed back in the hospital with a particularly nasty flare-up of his condition.

In this memorable scene, the doctors and nurses gather round him while he is stretched out, hot, sweating and nearly naked on his hospital bed. Marlow begins to hallucinate.

There are many versions on YouTube of the Dry Bones musical interlude, but this one is surely the best.

Parental anosognosia

anosognosia: Lacking insight that you are mentally ill

My inspiration (ramble?) for today’s blog was prompted by reading about the Elizabeth Smart case. Elizabeth Smart was the fourteen year old girl who was kidnapped a few years ago and subjected to daily rape by her captor. The article talked glowingly of how well adjusted she is these days because of the strong support by her family and the fact that “they believed what she told them.” In cases of trauma, a psychologist wrote, it is important to believe that what the victim is telling you is true. Believing Elizabeth Smart doesn’t look like that much of a stretch to most people. I wouldn’t give the family too much credit here for psychological insight. Of course what she told them is true. The supporting evidence is right there in the open.

Well, we all know that apparently this sage advice doesn’t apply to mental health. As faithful reader of this blog, Marian, points out, people “get” the origins of physical trauma, they don’t “get” the origins of mental trauma.  There are many parents who believe in something called “serious mental illness.” I feel very sorry for their relatives who spend a lot of time in psychiatric institutions not getting better. I suspect they remain there because their voices are not heard by the people who count — their parents. The parent prefer to believe their relatives are seriously mentally ill, and rage is what they get in return.

What parent would sit by and let their child languish for years in an asylum? There is something very strange going on with parents who allow this to happen. They are washing their hands of their relative, but they don’t see it this way, of course. From the way many of them go on about how hard it is to see this happen to their troublesome relative, you’d think it was all about them. Yes, it is all about them.

The parents suffer from anosognosia, a refusal to admit that they are deluding themselves and are in need of help. The children are trying to tell them there is something wrong if they would only believe them, and the parents aren’t listening.

Tiger mothers

Many of you may already know about the stir that Yale law professor Amy Chua has created with her latest book, The Battle Hymn of the Tiger Mother.

Amy Chua wrote an article that appeared in the WSJ this past week. It has garnered a record number of comments (6999 at last count), almost all of them are irate. The book sales and media coverage look promising.

Here’s just a sample of what readers responded so vehemently to:

The fact is that Chinese parents can do things that would seem unimaginable—even legally actionable—to Westerners. Chinese mothers can say to their daughters, “Hey fatty—lose some weight.” By contrast, Western parents have to tiptoe around the issue, talking in terms of “health” and never ever mentioning the f-word, and their kids still end up in therapy for eating disorders and negative self-image. (I also once heard a Western father toast his adult daughter by calling her “beautiful and incredibly competent.” She later told me that made her feel like garbage.)

She employed weeks and weeks of military style tactics to force  her daughter to perfect a difficult piano piece. The kid just wasn’t getting it, apparently.

I rolled up my sleeves and went back to Lulu. I used every weapon and tactic I could think of. We worked right through dinner into the night, and I wouldn’t let Lulu get up, not for water, not even to go to the bathroom. The house became a war zone, and I lost my voice yelling, but still there seemed to be only negative progress, and even I began to have doubts.

This style of extreme parenting is not uncommon in Chinese mothers, yet their offspring experience pychosis no more and no less than the population at large. For those who claim that schizophrenia is due to mixed messages, Ms. Chua’s husband is Jewish American and by all accounts wanted her to lighten up. (Jed took me aside. He told me to stop insulting Lulu—which I wasn’t even doing, I was just motivating her—and that he didn’t think threatening Lulu was helpful.)

All decent parents want to do what’s best for their children. The Chinese just have a totally different idea of how to do that.