“Every single time you help somebody stand up, you are helping humanity rise up.” ~Steve Maraboli
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 few years of rotating diagnoses that we were given in regards to my son.
It’s not only infuriating to find out that your child has been consistently and repeatedly misdiagnosed with an array of extremely challenging and life altering diagnoses, but it is also deeply alarming. How is it possible that so many “so-called” 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. Not only had The Children’s Health Council dropped the ball in diagnosing my son properly, but they missed a significant diagnosis of severe language deficit disorder.
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, They evaluated him and had him tested by various 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 wrapped around his fragile soul, he couldn’t get past his own feelings of self-loathing knowing 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 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, but it wasn’t the end for our family. In fact, it was the beginning.
Had I not taken my son to Dr. Ross and received another diagnosis of schizophrenia for my son, I would have never sought out help at NIMH (The National Institute of Mental Health). 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.
When a person is misdiagnosed the after-effect is ineffective treatment that may potentially worsen symptoms. I know this to be true in our own situation. Despite advancing scientific technologies and understanding of the human brain, diagnosing “psychiatric” disorders 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 representing 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 has been living with them. I had forgotten to lower the ratings on Netflix and my son was watching horror movies. 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 the behaviors. Once the media was removed very early on, there has not been a single incident in which it appears as though he was suffering from delusions or having trouble comprehending reality.
Going forward we have 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. 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 a 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 accurate diagnosis.
I do not believe that children should be handed serious and life altering diagnoses such as schizophrenia, bipolar, schizoaffect 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 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.
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. 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 life long success in achieving long term positive results for mental health.”
“Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into air.” ~ John Quincy Adams