Joy Keys argues for a change that could benefit the kids we love.
I wonder how many people fall into the category of “undiagnosed.” I have a son who is diagnosed with Generalized Anxiety Disorder. The doctor refused to go further with a more specific diagnosis unless I would medicate. I should have pushed forward knowing I would not medicate him at that time. So for now, we have no accurate official diagnosis, but I am confident we are dealing with Asperger’s. At this point, I still struggle with whether or not a diagnosis is going to make any difference.
It is unprofessional for a doctor to give a generic diagnosis for my son because I said I do not want to medicate at this time. It is exhausting to jump from doctor to doctor and deal with insurance while we find a doctor who will do their job correctly by diagnosing then giving treatment options. What parent wants to agree to medicate their kids before they have answers, anyway? How silly would it be if a doctor said I am not going to test you for a medical issue unless you say you will take medicine? As a patient, you wonder immediately whether they are taking care of me as a patient or the pharmaceutical rep who wants them to push a certain medication.
Before anyone gets offended because I did not want to medicate or we have not knocked on every doctor’s door until we got him the help he needs … let me share a few facts about my son. He is VERY high-functioning and his biggest struggle is anxiety and social interaction, which we work on daily with him. I do currently give him some medication to help him sleep. I am not anti-medication. I just want to know what we are dealing with before we consider the best treatment options.
He is aware of his “quirkiness” or “differences” and we talk openly about how he sees the world differently. He will be twelve years old in just a few weeks, so seeking a diagnosis is a bit trickier now. I want to do this with him, not to him. We have plenty of time. Asperger’s is not going anywhere and we have time to find the right doctor for him. Our pediatrician is in agreement with the diagnosis of Asperger’s, but for an official diagnosis, you need someone other than a pediatrician. Finally, I feel every child and every family is unique and just because it works for one family does not mean it will work for our unique situation.
As a marriage mentor, I watch marriages crumble around me and people seeking help. I find sometimes a person or two sprinkled in the mix that may have gone undiagnosed. Maybe they were so high functioning, like my son, that nobody really understood or just thought they were “quirky.” When I was younger, kids were not diagnosed unless they were medically ill, uncontrollable, or could not function or learn. I see now there is such a range of autism or autism-like disorders. I wonder, should it just be a mandatory test as children grow up so that people who are struggling in silence do not go undiagnosed?
Older children and adults often struggle to move forward and seek help for the fear of a label. Nobody feels “normal” anyway. People probably have already labeled you behind your back if you are “different” or “quirky.” So why is more mental testing not mandatory in the same way a physical exam from a medical doctor? Why do we attach such shame to a label, especially Autism? We do not shame a person when diabetes or high blood pressure is diagnosed. Employers want to know the physical health of a person but rarely screen for mental health. Maybe mental health and conditions such as autism should be a part of the screening process for everyone.
I do not know what the answer is, but I know that too many adults struggle who could be getting help to understand why they have no friends, why they can’t keep a job, or why they do not process information the same way as others.
We struggle to know what the best plan is for now and for the future. It would be beneficial to have a diagnosis so that he can advocate his needs should this disorder become harder to navigate in the future. However, does a diagnosis really change anything when you have learned how mimic others and behave appropriately? I hope in the years to come that everyone can know if they are on the spectrum, where they are on the spectrum, and how to advocate for help so that we can all be our best. Here is one person fighting till all the pieces fit!
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