Diagnosis: Bravery

By Fatima Syed

As a hospital physician I am occasionally required to treat patients with schizophrenia, bipolar, depression, autism and other neurological disorders who come for medical emergencies.  As the mother of two children with autism, I consciously try to separate the patients physical illness from their mental disorders. A good example is pain. Pain is very subjective. More often than not, I see the label of  “drug seeking” being used for psychotic or depressed individuals with medical emergencies.

Unfortunately, last year my son Arsalan was hospitalized for fourteen days with a surgical emergency. It happened five months ago but I still remember with clarity the vulnerability, the shock, helplessness and, frankly, frustration I felt as a parent of a teenager with autism who also happened to be a hospital physician. Following is the recollection of one of those days my son was hospitalized. It is forever embedded in my memory because it made me realize how much more emotionally connected and sensitive my son was to me and his loved ones than we gave him credit for. It also made me realize how the medical profession needs to be more objective about treating people with an underlying mental or neurological disorder without bringing in their own bias or preconceived notions and tendency to be dismissive of physical symptoms,especially in those patients who have a higher or lower threshold of pain compared to neurologically typical individuals. This can lead to misdiagnosis and delay of care that can potentially be catastrophic.

I put my head on the pillow next to my son on his hospital bed. Sheer exhaustion had set photo (22)in. I  was on auto mode, running on empty but I had to prop myself up to be there for him. I was the one with the medical knowledge. I had to stand up to the surgeons, question their decisions, discuss treatment plans. I made those decisions daily as a hospital physician but now I was on the other side, probably now the  “demanding family” we referred to amongst ourselves at work for those families who asked a lot of questions and expected a lot.  I, who barely was assertive or aggressive by nature, had put on my amour daily for two weeks now to advocate for my handsome teenager who couldn’t speak for himself; for whom the world of medicine had dismissively used the autism label to discredit his belly pain for three days, only to be proven wrong when they found out that a chicken bone , the grilled chicken he relished so much, had penetrated the wall of his intestine causing a surgically emergent operation and multiple post operative complications.

“Mommy”. I looked up from the pillow to see my brave, not-so-little anymore, handsome son looking at me, the nasogastric tube draining his abdominal contents not in the least detracting from the inner beauty that seemed to bathe him from the day he was born. He took his big hands, put them on either side of my face and kissed my head gently, reassuringly, and continued to gaze into my eyes. He smiled as much as his cracked lips could allow. He was being the parent to me. He wanted to protect me. He was telling me it would be ok, that watching me suffer was more painful to him than the pain of his surgery, the tubes in his arms, nose and stomach and not being able to eat for fourteen days.

I hugged him back, forced my smile to reach my eyes (he would notice if it just was cursory) and told him that I was fine, that he would be fine, and that I loved him oh – so – very much. He held on to me a bit longer and, once he was satisfied with my response, gave his trademark smile that was charming, mischievous, innocent all at once. Finally he lay his head back and immediately fell asleep, the pain flickered on his face during slumber, pain he had masked for me so I wouldn’t worry.

Interesting, isn’t it? The autistic boy who was by textbook standards not supposed to feel emotion, or at least not perceive it, is one of the most sensitive, selfless people I know. Pure, perfect son of mine with the heart of gold – if there’s a heaven and I pray with all my heart there is – I know you will undoubtedly be among the chosen ones there.

Being a medical professional in this situation can be a blessing and a curse. A blessing because you can advocate for your child with full knowledge. A curse because you know all the worst case scenarios that can happen.  I was lucky enough to have the knowledge and ability to navigate the healthcare system. But for someone who is a lay person and advocating for their loved one with a mental or neurological disorder, it can be a nightmare. One of the ways to achieve that communication channel between physician and family is to let the doctors and nurses know from the onset what the patients baseline is and how they respond to pain and discomfort. Keeping a written log available to doctors and nurses is important. Daily feedback from the family also helps to track progress. Doctors, nurses and other allied healthcare providers need more training about learning to better diagnose symptoms in individuals who are differently-abled  and also not lumping all neurologically or mentally disabled individuals into one category based on their past experiences, thus consciously addressing and overcoming their own preconceived notions about  individuals who are not neurotypical.

Today, my son  is a healthy, happy teenager but the month of October 2014 will always be remembered by me as the month I realized how much I loved my son when I almost lost him.

Fatima Syed

Through her blog series with CHAI, Fatima shares some of her experience as a South Asian mother of two children with Autism and, through breaking her silence, helps to eliminate the stigma of mental health disorders that so often result in injustice and prejudice. 

2 Comments on “Diagnosis: Bravery

    • What a beautiful, sad, heart-wrenching story Fatima. I can relate so much to this, for example, when you have to smile up to your eyes, because your son will notice if it is a cursory smile. It is so good that you have shared your experience with us so that we too can advocate for our children in such a serious situation. It is also a wise reminder to take them seriously when they indicate they are in pain. My son often says his stomach is sore when he means he doesn’t want to eat the food put in front of him. I have to be so careful of the “Cry Wolf” situation where one day he may say his stomach is sore, and I ignore it because I think he doesn’t want to eat his supper. I really appreciate your story. Thank you.

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