“We like to think that the diagnosis that we make will also help to predict what sorts of treatments will or will not be effective for the condition. It’s pretty easy to argue that our current approach to psychiatric diagnosis falls far short in each of those areas.” ~Keven Turnquist M.D.
This is an updated and edited post from when we left The National Institute of Health eight months ago.
A little over four years ago my son was diagnosed with schizophrenia. For the three years after his diagnosis we struggled with trying to come to terms with not only the illness, but the long-term prognosis, and how we’d manage to obtain the proper supports and treatments.
For much of those three years we were lost, in shock, and dumbfounded that a ten year old could be diagnosed not once, but twice, with this debilitating malady. To be honest, it was a dark time, and trying to find support, effective treatment, and knowledgeable professionals in childhood onset schizophrenia was near impossible. That is, until we were taken into a research program at The National Institute of Mental Health, NIMH.
For seven weeks we were a part of an NIMH research program for childhood onset schizophrenia at The National Institute of Health, in Bethesda, MD. NIMH conducts various research studies involving an array of neurological maladies at the NIH campus. We were lucky that after a few months of communicating with NIMH and sending medical and school records from the last five years, we were invited to participate in their study.
In the beginning, the doctors and nurses working with my son were very careful not to indicate one way or another whether they thought my son truly had schizophrenia. They only spoke about the behaviors they were seeing and the challenges they felt he was struggling with.
The medical team took their time evaluating our son and advised us to be patient when we prodded them a couple of weeks into his stay as to what they felt was the diagnosis. It made me feel secure that they were working diligently to determine the true cause of my son’s symptoms and the context in which the symptoms were manifesting.
About four weeks into his stay, we were rewarded with a new diagnosis of autism spectrum, a severe receptive/expressive language disorder, and severe anxiety. In a million years I would never have believed I could be literally thrilled to receive a diagnosis of autism for my child, but I was ecstatic. My son’s original diagnosis of autism and severe anxiety at six years old was the diagnosis that NIMH had determined to be his current, and correct diagnosis. It was a bittersweet moment for our family.
Once I absorbed the news and experienced the initial feelings of joy, that joy then turned to anger and confusion. Anger, that we had lost three years in which we could have been treating his language disorder and confusion, as to how doctors could have gotten it so unbelievably wrong.
I mean, come on! It’s not as though we were taking him to see quacks all those years. We took him to some of the most well respected psychiatrists and clinics in the country. Yet, these doctors and clinics still, according to NIMH, got his diagnosis wrong. The medical team explained why this could easily occur, but it didn’t help me feel any more at ease over the missed years.
Had it not been for the nagging feeling that the doctors, even the ones that were “so-called,” experts in their field had it wrong, I may never had made the phone call to NIH, and my son would have spent years enduring treatments and therapy that were unnecessary
In my opinion, medical professionals are too quick to make false psychiatric judgments for youth under sixteen. This trend in making inaccurate assessments for the sake of coming up with a quick diagnosis to satisfy insurance companies, schools, and parents, only ends up causing detrimental harm to the child and family in the end.
Doctors at NIMH told us that a child’s behavior is challenging to diagnose because symptoms of anger, anxiety, and social withdraw could all be a part of a temporary condition not related to a mental illness. Some symptoms could be a part of developmental growth or just teen angst that will resolve itself over time. Plus, most times children cannot accurately describe symptoms or process what is happening to them and therefore doctors have to go by what is reported to them by parents, schools, and others who interact with the child daily. That’s one of the reason mistakes are made in obtaining a valid diagnosis before adulthood.
Shortly after leaving NIMH, my family moved to Washington State and tried to begin the long road to recovery for my son and for ourselves. We were hoping to provide him with the social skills classes, speech therapy, and a school environment in which he could thrive. We had so much lost time and treatments to make up for.
What we found though, was that we had moved to a state whose mental health care system was in a complete and utter condition of disarray. Not unlike so many states in this county.
We found that, unfortunately, nothing was going to come easy, not even holding on to the diagnosis given to us at NIMH. There is a possibility, that our son now has a dual diagnosis of autism and a more severe neurological malady.
The doctors at NIMH warned us that a different neurological malady could materialize as our son aged and symptoms become more pronounced. They warned us that it was extremely difficult to diagnose a child because children are still developing both physically and mentally. It’s starting to look as though they were dead on in this assessment.
So here we are, eight years since the first diagnosis of autism, four years since the diagnosis of schizophrenia, and eight months since the reestablished diagnosis of autism and we are still dumfounded, lost, shocked, and confused as to how we can provide supports, treatment, and significant care in a society where all of these things are practically non-existent or you have to kick, scratch, beg, and fight for any services that you do receive.
Eight years spent advocating, fighting for my child, moving and traveling from coast to coast, specialist after specialist, all in an effort to save and improve the quality of my son’s life and feeling as though we’re stuck in an endless maze that keeps depositing us back to where we began. I can’t quit fighting though, he’s my son, and I love him.
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”