Attention Healthcare providers:
Is your service neurodiversity-affirming?
Does it provide a psychologically safe place for those who are coming to you at a time when they need to be treated with the utmost care?
Are your staff trained to understand the needs and experiences of your neurodivergent clients?
Does the environment consider the sensory needs of those whose nervous systems are on overload?
Below outlines the recent experience of a friend who is neurodivergent.
I walk into reception, the lights are bright and it’s oppressively hot. It was a hard decision to come here- no one wants to admit that they’re not coping – but I know I need help to learn strategies that will support me in times of distress, and this place offers that.
My best friend (and my advocate when times are hard) sits with me and we wait. No one explains who we are waiting for, or for how long, and my anxiety grows. I want to get out of here.
My friend speaks to reception, asking what will happen next, explaining that my anxiety is escalating. Finally, a nurse comes to get me. He misnames me and tells me to follow him. Due to Covid rules, my friend is unable to come with me.
I’m led to my room and given a pile of forms. I have strengths in many areas, but I struggle with forms, particularly when I’m highly anxious. I’m overwhelmed, shaking and “freeze-mode” has kicked in.
The nurse comes to get me and takes me to see the doctor for the intake assessment. I’m told to sit in a chair and I wait for an hour. No one comes near me.
I see the doctor, am given more forms and told to go to pathology for blood tests.
I don’t know where pathology is, I don’t know this hospital at all. I ask the nurse for help with my forms and for him to explain what they’re for. He points to places on the form that I need to sign, but he’s busy, and no clarity is provided.
I tell him I don’t know where pathology is, so he walks me there when he finishes his shift. I’m petrified of blood tests and have never been alone for one. Thankfully, the nurse is kind and it’s done quickly. Then it’s time to go back to my room.
But where am I? I walk through the halls, panic-stricken. I’ve verbally shut down and am not able to ask for help. Eventually, I find my wing and walk into the lounge, where people are vaping – the smell assaults my senses, I’m dizzy, and I gag. I can’t remember where my room is.
I’m led to a group session where people discuss their drug and alcohol addictions. Why am I in this group? This isn’t my story.
A new nurse finds me and takes me to see the psychiatrist.
The psychiatrist sits with her arms folded, staring at me. She says: “so what do I need to know about you?”
I respond “um, what do you mean? do you want to know my age and where I come from, or do you want to know why I’m here? Or…”
“WHAT DO I NEED TO KNOW ABOUT YOU?”
My face grows hot, I’m trying to do the right thing, but I don’t know what the right thing is. I try again “I’m autistic, I don’t understand your question, could you please clarify what information you are asking for?”
A series of broad, cold, questioning continues for a while. I try to comply, I try to give her the right answers, but I just keep feeling so wrong and so confused. Memories of school flash back to me, of wanting to do the right thing but constantly misunderstanding and being misunderstood.
I leave the appointment crying and feeling shattered.
I receive a call from my friend saying she is in reception for visiting hours. She takes one look at my tear-streaked face, debriefs me on my day, and supports me in deciding to leave – this is not a safe place for me.
I pack my bags and the psychiatrist sees me as I’m leaving.
“I guess you aren’t ready to do hard things, huh?”
What is a neurodiversity-affirming approach?
A neurodiversity-affirming approach recognises that autism, ADHD, dyslexia, Tourettes Syndrome, dyspraxia, and other conditions aren’t problems to be cured or solved, but are, instead, individual neurotypes with unique strengths, needs and challenges.
Employees of a neurodiversity-affirming service possess an understanding of different characteristics of each neurotype and an awareness of the experience of neurodivergent individuals. The systems that underpin service delivery consider (among other things) sensory needs, communication styles, and executive functioning.
In the above example, some simple adjustments may have made a world of difference:
A video and concise written instructions detailing “what to expect on your first day” are sent to the patient prior to admission;
An orientation to the space (including visuals);
Ideally, the patient’s advocate would be allowed on-site to help navigate the bureaucracy of the first day (following strict Covid hygiene measures). If this exemption cannot be made, then investing in a neurodiversity-informed employee is imperative to assist with forms, escort the person to appointments within the hospital, and provide clarity and certainty;
Ensure that the professionals hired are neurodiversity affirming;
Patient-centred care: know their name, have a basic understanding of their story, send them to groups that are relevant to their experience and needs; and
Recognise that for a person to turn up to the service, taking each step to wellness in an unfamiliar environment, is hard.
It’s a reality that businesses must be profitable and KPIs drive service offerings.
In the example described above, some KPIs were clearly met. On the first day, the patient:
was assigned a room
saw the GP
had pathology done
attended a group
saw the psychiatrist
Yet, was this a successful business outcome?
A patient left, further traumatised; a private hospital’s 26-bed wing sits in Sydney with only 17 patients.
At a time of an extreme mental health crisis, this hospital could be helping so many more people AND running a successful business.
Why are people not coming? Is it because other vulnerable people are experiencing this as an unsafe place to get well?