"Sorry I'm late (diagnosed autistic)"

On the flexibility of neurodivergents in a rigidly neurotypical world

What does embracing my neurodivergence mean to me today? Not holding myself accountable to inflexible neurotypical arbitrary rules of behaviour.

For once I refrained from apologising when I arrived this morning one minute late to a medical appointment. Given my record of chronic lateness, I was effectively on time and quietly congratulating myself. To get myself to the appointment, I had conquered mountains of domestic caring duties. As I was checking in to the clinic, I was simultaneously pairing my autistic kids’ headphones with their devices, adding their iPad to my iPhone’s personal hotspot and starting the data clock on my daily one hour of unlimited mobile data allocation. We were all prepared. I had already debriefed them, they know these medical appointments run smoother when I am uninterrupted. Plus, they would never disrupt me for fear of missing a word said by any one of the many screaming YouTubers they so revere.

The receptionist looked at us with disdain and informed me that it is against their policy to allow children in to their parents’ appointments in case they became a distraction. Feeling immediately defensive, I informed her, “I have brought them things to do so they can’t be a distraction. We are all autistic, I can’t just leave them with anyone”. I am a full time carer and autistic parent, homeschooling both children to accommodate their needs in a world that was not made for us to thrive.

“Our policy is that you are allowed one support person and no children can attend. You should have been told this when you booked. Did you book online or did you phone us?” the receptionist asked.

As an autistic perimenopausal woman, it is a wonder I am here at all (especially after my hormonal depressive crash last weekend), but I am here now, so can we just do it please?, I said this only inside my head it turned out, by this time feeling completely flustered and rapidly approaching mutism. I pushed through this ordeal, holding painfully unsatisfying eye contact as she judged me.

“I don’t remember how I booked and I don’t remember them telling me this policy.”

Health professionals do not have adequate training in working with autistic patients. They hold stereotypical views of what it is to be autistic - a young white boy child overly keen on trains and on lining things up, usually toy trains. This contributes to the ongoing denial of supporting neurodivergent women in identifying traits in themselves. It also creates a barrier to us accessing the vital medical care we need and deserve.

Unwaveringly she nods in the direction of the open waiting room and asked me, “Can they just sit over there? It’s only a half hour appointment”. I turned to my boys and ask them, “Can you sit over there for half an hour?” They knew the drill here, they were not about to be effectively abandoned, yet they still looked sad and confused, while shaking their heads at me. I turned back to the receptionist, and shook my head at her. Off she went, to ask the health professional if they were willing to see me with both my children. I remained flustered yet hopeful; hoping everyone’s time hadn't been wasted.

The typical medical waiting room is an overstimulating landscape in the eyes of neurodivergents. The flickering lights, the buzzing computer systems, the inane questions confirming personal identity, as though someone else is masquerading as me at my scheduled appointments. This in a country where many people are paying for their own healthcare, even for the most basic of appointments. Doesn’t this make me a paying customer? Surely then I should be able to buy into a service that is neuro-affirming and inclusive, but alas no such medical service yet exists.

The receptionist returned to tell me this is a “strict policy” and they were unable to see me today with my children. I did not argue, I rescheduled my appointment for another time over a week away. I need to figure out childcare. I will have to reschedule subsequent appointments with other health professionals because we are awaiting test results from today’s procedure to inform my ongoing treatment. I do not have the executive functioning skills to face the repercussions of this unaccommodating policy, are my thoughts racing through my head.

In my car after this wasted trip, I write notes on how this exchange has made me feel. I take the opportunity to record the things I wanted to say, because they need to be said but they didn’t make it out of my mouth in the moment.

I listed what I, as a late diagnosed autistic woman, mean when I arrive late to any appointment apologising with, “Sorry, I’m late”:

• I failed again

• I don’t have adequate executive functioning to complete all the steps in the right order to get me here at the alloted time

• I am ADHD and have time agnosia so I do not feel the passing of time; therefore it is difficult for me to factor this meaningless social construct into my human experience

• I can’t adult properly

• I’ve let everyone down

• I am embarassed

• I am going to avoid putting myself in this situation again

• I have missed my chance this time

• I am a big hot sweaty mess

• I wish I stayed home with my cats

There are numerous structural barriers to my healthcare needs, of which the concept and associated expectations of time is only one. The unspoken implicit rules are another for myself and my children; they are reluctantly okay with accompanying me to an appointment, as long as they have YouTube access. As a parent, and a paying service user, shouldn’t I be made to feel safe and confident in my healthcare appointments?

Among my other scribbled notes of frustration, I wondered precisely why they thought two autistic children who I can’t drop off to just anyone’s care would feel comfortable without me in a public medical waiting room? That would have been at least two meltdowns waiting to happen, and endless interruptions to the procedure.

Why could they not provide a reasonable accommodation for the emotional safety and regulation of their neurodivergent patients? Autistic patients will always pick up on the emotional energy in a room, and surely disclosing our diagnoses should have led to some sort of compassionate response. When it is time for us to need to return for subsequent appointments at the clinic, we will hold within us the feelings of frustration and rejection from today, which is not conducive to a positive consultation.

Seeing as these organisations are so rigid in their policies, I would have hoped they had a wide range of policies including a Menopause Policy and a Neurodivergent Policy. Perhaps I should offer to help them write them…

The mistaken stereotype of inflexible rigidity in the worldviews, life choices and opinions of autistics is laughable, when compared to the rigidity of neurotypicals to compromise on their immovable workplace rules and policies that benefit the majority to the detriment and risk of the few.

Fortunately, not all of my medical practitioners are so unaccommodating. A healthcare professional I have been seeing lately is only too happy to include my children at my appointments, complete with their devices in hand and donning headphones. She brings in extra chairs for us all, and has told me that her own daughter is autistic. Upon my first consultation, she asked me how she can accommodate my needs to help me feel comfortable in her clinic. I was grateful to be asked, and said I would prefer correspondence to be in writing via text or email. I briefly outlined my slower processing times and needing pauses in discussions before I give a response. She is patient with me when I am required to rate pain levels out of ten and my interoception is lagging. I have felt comfortable in asking her to turn out heaters when my eyes feel overly dry.

It doesn’t take much to help autistics feel safe in clinical settings. Reasonable accommodations can make all the difference to our sense of validation and positively enhance our ability to communicate.

Today’s perceived failings are an opportunity for me to reflect on my personal progress, whilst I process my ongoing perimenopausal regression. Fluctuating capacity is the lens through which I view my autistic perimenopause. I am developing the self-awareness to afford myself greater self-compassion for my needs and differences is a gift, all the more so when faced with the institutional structures built to only meet the needs of neurotypicals.