What’s it like? I hear you ask.
What happens? I hear you ask.
This is our story.
Both myself, Julie, and my husband, Samuel, are autistic. We are adults. We are in our thirties. I regularly get asked to attend outpatient appointments for different long term health conditions. Both myself, Julie, and my husband, Samuel, attend together because I like to know another person is there witnessing the appointments.
Before the outpatient appointment I ring ahead. I let the department, which ever one it maybe, know I am autistic and would like a double appointment as a reasonable adjustment to allow me more time to process the information.
On the day of the appointment myself, Julie, and my husband, Samuel, arrive at the reception we are often told the reasonable adjustment was rejected and it is only a single appointment.
We are called into the room with a consultant. The consultant has managed to be told I am autistic. Straight away the consultant turns to my husband and begins to speak.
Asking why is she here? Why has she been referred here? And often who are you?
My husband who finds speech hard manages to mumble I am autistic too.
The consultant stops.
The consultant looks at us both.
Then the questions begin again.
Why are you here?
I begin to explain.
How do you know that is a symptom?
I begin to explain.
But you have autism how do you know it isn’t just your mind playing tricks on you?
Here I stop. I pause. I freeze.
I begin to doubt myself. I begin to question myself. In side I am in knots.
The consultant continues talking but I am frozen inside. I no longer hear a word. I glance to my husband his eyes tell me he too is frozen. Lost for words. Not sure what to do. Dithering inside like me.
We are both stuck. Here in a room with a consultant who clearly doesn’t know much about autism and has an opinion of what autistic people are like.
We leave the room disheartened and confidence thwarted.
The scenario I have described above is sadly a regular occurrence in our life. It is rare we experience anything else.
We support one another the best we can but there are times when we are both lost for words and only our eyes can communicate with one another.
We do not have anyone else who can support us. We are deemed as able to manage as we have one another.
So back to the opening questions.
What’s it like? An outpatients appointment in adult medicine is distressing, overwhelming and judgemental.
What happens? Assumptions are made about your ability because you have disclosed you are autistic.
It seems disclosing you are autistic means all your symptoms are silenced and you are left to feel like you are a time waster. It leaves both me and my husband wondering why we make the effort to try to speak and why we make the effort to describe symptoms when they appear.