The silent battle of special needs and medical care

Most people are aware of the constant battle for advocacy in the educational system when it comes to special needs. But there is another looming battle that special needs families face on a daily basis-medical care. Medical discrimination is real. It is something we personally deal with on a regular basis with Luke. I have many personal stories I could tell about Luke. But it is not just us. Hear me: Individuals with autism and/or other special needs are much more likely to experience medical discrimination.

I was reminded of this again this morning thanks to FB Memories. Two years ago,  we went to Duke to see pediatric ophthalmology for Luke's newly developed lazy eye. We waited 3 HOURS before we even got placed in an exam room. When the doctor finally did come in, she spent 5 MINUTES with us. I explained that the onset of his lazy eye had occurred a few months earlier and I would like to know how to treat it. Did he need to wear a patch? What would be the course of action? She said that nothing needed to be done. I told her that I would like it treated-Luke didn't look this way before.  I left furious. Although she apologized for the long wait, that doesn't make up for the 90 minute drive there, more than 3 hour wait, 5 minute visit with no resolution, and a 90 minute drive back home. If I had brought in a verbal, pretty little girl, do you think she would have come up with a treatment plan for her? I do. I believe that because my son had special needs and was non-verbal, he wasn't provided adequate medical care.

Or what about the time I took Luke to the Emergency Department because I was sure he had C. diff. Clostridioides difficile (also known as C. diff) is a bacterium that causes diarrhea and colitis (an inflammation of the colon). The resident told me it was just a virus and I was just an overly worried mother. It took me another week before he was diagnosed and received treatment because I had to go through the process of getting  a stool test ordered by the pediatrician and all the steps of having sample evaluated. Not only am I also a medical professional, but I am a mother who knows my son. Respect the input of caretakers.

Luke's medical symptoms often get dismissed as "it's just autism". This is just WRONG. Because he cannot verbalize or pinpoint what is wrong, most of the time he is not even given an adequate exam. Unfortunately, there is a  lack of the standard of care for individuals with autism. Did you know that individuals with autism spectrum disorders have a higher comorbidity burden than the general pediatric population, including higher rates of seizures, psychiatric illness, and gastrointestinal disorder? .And yet, these comorbidities are not often addressed. THIS NEEDS TO CHANGE.

Similar to the school system, when a child is medically complex and doesn't fit in one or two boxes, providers often do not know what to do with them. Parents are left exasperated. And the children's needs are not adequately cared for. Luke has been passed over by medical programs at several medical institutions in multiple states because of this very bias. Luke has multiple diagnoses: deafness, autism, Usher Syndrome, PANDAS, as well as mitochondrial, metabolic, and immune dysfunction. And he is nonverbal. He is not less of a human. He deserves appropriate medical care. And we are not alone. I could share additional personal stories as well as story after story of others who experience this bias.  THIS NEEDS TO CHANGE. 

The purpose of this post is to educate others- those who know nothing of the battle we fight, and those parents who are in the midst of this very battle themselves. Awareness is the first step to addressing a problem. We must all do our part to give these families a voice to receive appropriate medical care for their loved ones.

** I am thankful to share that Luke is currently under the primary care of a wonderful, attentive pediatrician and neurologist who are addressing his medical needs.**

Be BOLD,
Jo Anna