First Do No Harm

The primary principle of bioethics and medicine.

One might recognise it today as a risk-benefit analysis; the benefit to the patient must demonstrably outweigh the risks. A wise, just and noble principle.

A principle doctors and health professionals throughout the ages were, are and will be proud to abide by and uphold. The Prime Directive of medicine if you will.

First, do no harm.

In my last blog I discussed the adverse reaction I had to a medication. Despite such adverse reactions being common in autists, the risks from this medication were not considered.  In my blog before last, I discussed how I have been misdiagnosed as having bipolar affective disorder because I am autistic, despite withdrawing consent for the assessment before it even commenced. This misdiagnosis has caused me significant distress (and financial harm) effectively denying me access to many medical services because I no longer trust them. When I go to the doctor with a problem they have not once been able to diagnose and assist unless I know exactly what the problem is and what I want.

Autists are more likely to be harmed by medical interventions because medicine does not consider the risks specific to us, we are more likely to be misdiagnosed putting us off seeking future help; and even when we do seek help doctors are more likely to disbelieve our often atypical symptoms and overlook our illnesses. One might think that was quite enough medical adversity but actually there is more and arguable the worst, as it can make accessing health care for me extraordinarily difficult. That is the repeated microaggressions we receive from many allistics but seemingly and bizarrely particularly from allistic health professionals who you would think would know better.

Microaggression is a term that was coined by Chester Pierce (a psychiatrist at Harvard) in 1970, to describe the regular insults and dismissals African-Americans received from others. It is a term used for commonplace verbal, behavioural, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults toward a marginalised group.

Every interaction I have with a medical professional is negative in some minor or major way. This is very common for autists. Whether it’s a brief look of hostility that flickers across someone’s face when they first meet you, a disbelief in what you are saying or patronising you and treating you as though you are stupid. This is the daily life of autists whose masks aren’t and can never be perfect both within and without a medical setting. Even at the milder end where I say something slightly wrong or in the wrong tone of voice, that slightly worried look flickers across their face. Or when I get asked an open-ended question and their impatience turns to exasperation and annoyance when I cannot answer the question immediately. Include the intersection of gender, race and queerness and the effects are multiplied.

These daily microaggressions exhaust and upset you, and it is particularly hurtful when it comes from the people who are literally paid to care for you. It makes me feel:

• I am not worthy of care

• I am not worthy of love

• I have no worth

• I am worthless

First, do no harm seemingly doesn’t apply to autists. We’re the wrong kind of patient. It is actually worse than that as due to this misunderstanding some health (so-called) professionals provide poorer quality care on purpose or even act in spite. I cannot prove this but I am fairly certain my misdiagnosis arose out of actions by my old GP and the last psychiatrist I saw – both of which I complained about. The former in person and the latter immediately afterwards (for negligence and for prohibiting recording the consultation respectively). I now record all contact covertly. First, do no harm indeed.

I feel I now have post traumatic stress if not PTSD due to how I’ve been treated by medicine in the last 18 months if not all my life because I am autistic. Autists are dying much younger than allistics and the above illustrates some of my problems which others must also be facing, and our early deaths must surely be related. This is a disgrace.