Caring for patients with intellectual or developmental disability

Ever wondered what it's like to be a psychiatrist? This series explores a day in the life of psychiatrists who work in different areas of psychiatry.

In this article, we hear from psychiatrist Dr Cathy Franklin about working with people with intellectual and developmental disabilities.

A Day in the Life of a Psychiatrist – Intellectual and Developmental Disabilities

Today is one of our clinic days, and in the psychiatric subspecialty of intellectual and developmental disability, one never knows what that will bring. Most patients can sit calmly in the waiting room, often with a support person. Some can’t make it into the building due to disabling anxiety and agitation, so we conduct an interview through the car window in the ambulance bay.

Not today. Today the first patient is on the autism spectrum and has catatonia, something I think I only saw once in my training years but have seen much more of in this state-wide subspecialty outpatient clinic.

The patient lies rigidly on the examination couch, both arms stiffly by his side, his eyes unblinking while we time just how long he can go without blinking. 50 seconds. That’s a long time! He doesn’t move a muscle (apart from breathing) in the 30 minutes he is on the examination couch. He needed ECT last time. As the usual non-medication strategies have not been successful, we will start lorazepam (as opposed to ECT) because he is still eating and drinking, albeit very slowly.

The next is a new patient with challenging behaviour. This is common in this subspecialty – it’s how most patients present. The trick is figuring out what the cause is. Is it physical? Often people cannot tolerate scans or bloods when awake, so this can be tricky. Is it mental illness?

This one is easy. The patient is hallucinating in the room, shouting and jumping at things that aren’t there. A total change in her presentation from a year ago, according to her mother. The local mental health service she took her to sent her away, saying it was just ‘behavioural’. We discuss with her (even though it looks like she isn’t listening, maybe she is) and her mother about psychosis and its treatment, and that we will also need to exclude organic causes.

We will try again to refer to the mental health service, but my hopes aren’t high. There is such a lack of training and experience in this area, which compounds the lack of accessibility of services for people with intellectual disability or autism (not for want of trying, we frequently receive requests to provide training).

My last patient is one of our ‘miracles’. She had undiagnosed mental illness for many years, and starting the right treatment has transformed her. Most of our work is not like this, but every now and then there is an ‘easy’ win.

But it’s bittersweet for me. How many people have been needlessly suffering? Recently we’ve had one for 20 years and one for 15. That has ripple effects not only on the person but on their family and support people. So, each ‘win’ has an edge to it.

The afternoon brings our team meeting, where we discuss cases. Our service has complex patients so there is always something fascinating to discuss. We reflect again on the barriers our patients face in accessing services.

Registrar supervision is next – I really enjoy supervising trainees and watching them learn and grow. After that I check some clinical trial bloods, organise study enrolment for another patient and to finish the day I present an online training session for a local mental health service.

Why specialise in intellectual and developmental disabilities?

When I first went into this area about 15 years ago, my colleagues could not understand why I’d choose this! The common perception was that there is nothing we, as psychiatrists, could do for people with intellectual or developmental disability.

Yet this is a population with significantly higher rates of (often undiagnosed) medical and mental illness. They die on average 15-20 years younger than the rest of the population. There is so much we can do.

I remember feeling quite overwhelmed when I started as a junior consultant; how confronting it was to have so many patients unable to communicate verbally. And for those that could, it was so difficult to understand their inner world due to their challenges with communication.

Over the years I’ve learnt more about how to collect reliable collateral history, how to really observe someone and how to hone my questions and to listen. How to look past someone’s behaviours to see the person.

Why I chose this psychiatric subspecialty

Early on, I made the decision to specialise in this area. At the time I was at that career stage of having babies and young children and working part-time. Which meant that I needed my work to stimulate me; I had to feel like I was learning, that I was achieving something for my patients, and this did that for me.

Genetics, medicine, psychiatry – it overlapped nicely with my background in consultation–liaison psychiatry. I enjoy that interface of medicine and psychiatry and keeping up to date with medicine as well as psychiatry.

As my children grew, so did the opportunities (and work hours). Presenting at conferences, serving on committees, advocating for change. Now I lead a clinical service of 9 (mostly-part-time) staff and a research team of 4 staff. I have several research projects, some very biological and some in capacity building in mainstream services in this area.

My final reflections

As the day draws to a close, I glance ruefully at my favourite magnet – “I am woman, I am invincible, I am tired.” This is an exciting time for the psychiatry of intellectual and developmental disability. So much growth in knowledge, initiatives for change and some amazing colleagues leading the charge.

There is an enormous need for more people in this area. I’m tired, just thinking about it! But my patients, their families and my colleagues give me strength.

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Disclaimer: Any patients mentioned in this article have been deidentified and created for the purposes of this article. This article may represent the views of the author and not necessarily the views of The Royal Australian and New Zealand College of Psychiatrists ('RANZCP'). By accessing the article you also agree to the RANZCP Website Terms of Use Agreement.


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