Just a Mother Sharing How Autism & Mental Illness has Imapcted our Family

The Trouble with Psychiatry

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“The history of psychiatry and its treatments can be a contentious issue in our society, so much so that when you write about it, as I did in an earlier book, Mad in America, people regularly ask about how you became interested in the subject. The assumption is that you must have a personal reason for being curious about this topic, as otherwise you would want to stay away from what can be such a political minefield. In addition, the person asking the question is often trying to determine if you have any personal bias that colors your writing.” 
 Robert Whitaker

bad  doctors

This is an updated version of a previous post.

Have you ever asked yourself “How do I know that the doctor or therapist I have trusted my well-being to, or my child’s well-being, is giving me an accurate and correct diagnosis?”  That is a question I asked myself often during the last eight years of rotating diagnoses that we were given in regards to my son.

I found it to be infuriating that my child was consistently and repeatedly misdiagnosed with an array of extremely challenging and life altering diagnoses, but I also found it deeply alarming.

 How is it possible that so many experts in their field got it so unequivocally wrong?  How can one, without concrete evidence over an extended period of time diagnosis a ten year old with schizophrenia?  For me personally, I feel that it was not only inappropriate that this occurred, but highly irresponsible as well.

The Children’s Health Council in Palo Alto, Ca. diagnosed my son after spending a few hours a day with him over a period of a week.  They took in past history from our family, schools, and former therapists. In evaluating him, they had him tested by a various number of specialists on their team. As a parent who is not trained in the field of psychiatry, I trusted that these were professionals who knew what they were doing and qualified to make a correct diagnoses.  When they returned with a diagnosis of schizophrenia, my heart broke and I grieved for the child who would never be.

The tragedy here is that the doctors and therapists made this assessment without understanding the context in which my son’s symptoms were materializing.  If they had spent significant time with my son, delved down just a tad deeper and weren’t in such a hurry to come up with a diagnosis. They could have prevented my son and my family from enduring years of stress, an unnecessary move, inappropriate medications, treatments, and placements. Not to mention the irreversible damage to my child’s self-esteem and lack of self-confidence from feeling as though he were “crazy.”

No matter how much love we have wrapped around his fragile soul, he cannot get past his own feelings of self-loathing feeling one day he may not have control of his own mind.  This was only reinforced by Children’s Hospital of Colorado who took his Autism diagnosis away after spending three days with him and then preceded to pull a multitude of misdiagnoses out of their hat.

Children’s Hospital was however able to do what no previous doctor, school, or therapist had done, and that was discover the language deficit disorder.  So I do credit them with that, I just wish they had been able to piece together that his language deficit had to do with the fact that he was, and is, Autistic.

For me, the most disturbing misdiagnoses was given by Dr. Ross at The University of Colorado. I felt that it was such blessing to have an expert in the field of child psychiatry, specializing in childhood onset schizophrenia and childhood bipolar work with my son.  After spending less than 45 minutes with my son, he came back and said that my son was indeed schizophrenic.  It was another blow to my heart.

Taking my son to Dr. Ross and receiving another diagnosis of schizophrenia for my son, was in the end, what compelled me to call NIMH (The National Institute of Mental Health). As I stated in a previous post, I just had a troublesome feeling that something was off.

Lucky for us, where almost every doctor/therapist/school failed my child, NIMH persevered. They did so by taking their time, making intelligent assessments, observing him both on and off medication for an extended period of time, and observing him in varying degrees of social interactions, including a classroom environment.

Granted, NIMH has the luxury of dedicating time and attention over several weeks to several months, which gives them an advantage in diagnosing children and adults correctly.  NIMH is staffed with colleagues who are in the top of their field and truly interested in getting to the root cause of the symptoms an individual is experiencing.  What NIMH isn’t doing, is trying to come up with a quick diagnosis in the 15-30 minutes one seems to be allotted for their psychiatrist these days, and then band-aiding the symptoms with medication that may or may not be appropriate.

In fact, NIMH believes in less medication and more therapeutic supports. I just wish the supports they want you to have for your child were readily available or existed at all.

When our son was misdiagnosed the after-effect was ineffective treatment that may have potentially worsened his symptoms. Despite advancing scientific technologies and new understanding of the human brain, diagnosing “neurological” maladies appears to be a subjective enterprise. Those in the mental health and medical fields diagnosis based on the symptoms being presented at any given time which leaves a wide margin for error. Especially if the frame of reference in which the symptoms are manifesting themselves are taken out of context.

For example, in diagnosing my son doctors concluded that my son suffered from hallucinations and or thought disorder because he appeared to be have difficulty separating fantasy from reality.  He often spoke of demons, battles he fought at God’s side, and a plethora of other seemingly disturbing and extravagant imagery that appeared as though he believed was realistic and incorporated in everyday life.

In reality, my son was exposing himself to inappropriate media such as horror movies and graphic video games. I say exposing himself, because even though we had parental controls on all of our devices, my son had no problem finding his way around them and watching programs and playing games he had no business watching or playing.  The point though is, information from the forms of media he was watching were not being processed through his brain the way others typically process the material.

Think about the times you’ve watched a remarkably frightening horror movie and then went to bed.  In your mind you understand that the movie you just watched was unrealistic, regardless, you feel frightened, ill at ease.  You may think you hear noises outside, the house creaking and settling may begin to disturb you, play tricks on your mind.  Shadows on the walls may appear to move, and you have to remind yourself it’s the shadows from the trees and the wind is blowing. It may take you longer to fall asleep, and when you do fall asleep you may be plagued by nightmares and wake often in the night.  After a day or two and the effect of the movie wears off, you go about your business as usual and you may even chuckle at how silly you’ve been getting so worked up over a movie.  No big deal for you, right?

In my son’s case, he would experience those same feelings of fear and unease only they were compounded by the fact that he has a severe language processing disorder, and extreme anxiety. He is literately unable to flush those images from his mind so easily. All the normal feelings others have while watching those forms of media tripled for my son and lasted days or even weeks after having watched particular movies.

NIMH discovered this while my son was living with them.  I had forgotten to lower the ratings on Netflix and my son was watching horror movies on the IPad.  In the days following he exhibited behaviors and spoke in a way that may have been interpreted as having delusions had the staff not understood the context of those behaviors.  Once the media was removed very early on, there was not a single incident in which it appeared as though he was suffering from delusions or having trouble comprehending reality.

Going forward we have had to ensure that we pay strict adherence in managing my son’s exposure to media so as to protect our son from having these challenges in the future.

Psychiatrists spending less than an hour every few weeks, or even while conducting an evaluation over a week or two time period, would not have been able to determine where the symptoms my son was experiencing were manifesting from. This is why and how his symptoms were misinterpreted and a diagnoses of schizophrenia evolved.  This is the trouble with psychiatry, in essence, it’s a guessing game where if you don’t have all of the conclusive facts, major mistakes are made and individuals are misdiagnosed with serious mental health disorders.

An incorrect diagnosis can and is dangerous, especially for a child.  Clear communication with your doctor is imperative and that can be challenging if you don’t have insight or a logical understanding of what’s happening with your body and mind. Most children do not have the cognitive ability to communicate or even process their symptoms, so a psychiatrist cannot accurately ascertain the information needed in diagnosing unless they are in an environment such as NIMH.

I understand that the majority of mental health care workers do not have the opportunity or luxury to observe patients in the setting that NIMH does. That doesn’t mean though, that doctors should be dishing out diagnoses without a genuine understanding of the symptoms and that can only be achieved over an extended period of time.

Which means 15-30 minute appointments every three weeks does not give doctors or therapists the time to properly observe and build a relationship with the patient so that they may provide a more precise diagnosis.

I do not believe that children should be handed serious and life altering diagnoses such as schizophrenia, bipolar, schizo- affective disorder, or any other major diagnoses if they are under the age of sixteen.

Unless, these children are observed in an environment over an extended period of time both on and off medications so as to limit the potential for serious diagnostic mistakes.  The above diagnoses call for complex and potentially risky psychotropic drugs which can alter or worsen symptoms in children and adults. I know from experience with my own son, just how dangerous these drugs can be, including making my son more aggressive and violent. Something I plan on addressing in a different post.

I am in no way advocating that that all mental health care workers, or doctors are incompetent, although some of the ones we have encountered over the years have made me wonder. I am however encouraging and advocating that every parent and individual seeking professional mental health care for themselves or their child use precaution.  I would suggest that for your child, you seek second, third, and even fourth opinions. Especially if your child is given a serious mental health disorder diagnosis.  Just because someone has a degree, it doesn’t necessarily make them an expert and it definitely doesn’t mean they are correct in their assessment as my family has repeatedly found out.

Technology may have evolved, but the field of psychiatry still has a long way to go in establishing more practical and accurate methods for properly diagnosing and medicating those in need.  My son’s diagnosis still continues to evolve at fourteen. We may not know the full extent of his malady until he is eighteen.

Also, as has been voiced to me on several occasions, whenever possible, “extensive therapy and the minimum amount of medication is the best way to achieve lifelong success in achieving long term positive results for mental health.” Of course, that’s also dependent on whether or not you have access to the therapy you or your loved one is in need of.

“If you expand the boundaries of mental illness, which is clearly what has happened in this country during the past twenty-five years, and you treat the people so diagnosed with psychiatric medications, do you run the risk of turning an anger-ridden teenager into a lifelong mental patient?” 
― Robert Whitaker

Author: angeliamarie44

This blog was created to share our experiences and the impact of mental illness and Autism. I believe in the importance of erasing the stigma of mental illness and for that to happen, families such as mine need to speak out, advocate, and provide the real story of what we endure daily. That includes, the struggles and the successes of our daily life and interactions with the health care system, schools, police, and society in general. Mental illness, just like cancer, diabetes, or even the flu is a medical illness and it's past time that we treat it as such. I feel our societies failure to provide treatment and support services for mentally ill individuals and denying hospital care to the mentally ill is setting a separate and unequal standard in our country that the mentally ill are somehow less deserving of medical care and being treated with the same dignity and quality care that any other person facing a medical crisis has the right too. They too have a right to a successful life free from pain and without proper care and understanding their illness could have life threatening consequences. As a mother with a child who has struggled for years with mental illness and Autism, I feel it is my path in life to raise awareness so that we might create the much needed change in this country and end the discrimination facing the millions of mentally ill. "Mental illness is an equal-opportunity illness. Every one of us is impacted by mental illness. One in five adults are dealing with this illness, and many are not seeking help because the stigma prevents that." ~Margaret Larson

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