Creating Actually Autistic Care

Written by Josephine Moon

“Sadly, I could write what I learnt about Autism during my medical training on the back of a postage stamp.”

That is a direct quote from a friend of mine, who is not just a doctor but a senior registrar in a psychiatric unit, which perfectly encapsulates exactly why I am so passionate about creating the Actually Autistic Care branch of our family company, providing Autistic connection, support, retreats and therapy led by Autistic individuals as a first-line option. An extension to this would be providing Autism education to therapists and teachers, delivered by actually Autistic practitioners. To be clear, you don’t need to be Autistic to help people with Autism. What you do need, though, is an up-to-date understanding of Autism, especially from the Autistic person’s perspective; however, as my friend said, this is not always provided in current medical training.

My inspiration for Actually Autistic Care began six years ago, when two family members received Autism diagnoses.

Despite having strong Autistic traits myself, I was dismissed as possibly being Autistic because my eye contact was “too good”. (For the record, you cannot dismiss an entire, complicated human being on a single moment’s meeting.)

This would be the first of many experiences I’ve had with people (working in the field or not) who carry an outdated, narrow view of what it means to be Autistic.

Post diagnoses, we began to haul ourselves through “the Autistic treadmill” of the machine of funding and available therapies. I quickly observed that some therapists pushed for their clients to attend a gruelling regime that was enough to lead to #autisticburnout. At this point, I found myself wondering whether, if the sought-after “improvements” were measured against neurotypical standards, if they were truly improvements at all.

Exactly who did these therapies serve?

After years of querying my own Autistic status, I sought a full assessment from a group who specialise in more internalised presentations of Autism. I wanted to go straight to someone who actually knew what Autism might look like in a mature woman (rather than a four-year-old white cis boy) so I could get a straight answer once and for all. The result? I am Autistic, always have been.

Being formally identified as Autistic was one of the most transformational moments in my life. The next was discovering #actuallyautistic and being led straight to my #neurokin.

Unequivocally, I have learned more from other Autistic people about how to understand myself and what it’s like to be Autistic than I ever did from any neurotypical therapist.

This … bothers me. In fact, it alarms me.

Of course, there are amazing neurotypical allies out there. My friend the doctor, taking the first important step of admitting the gaping hole in their education, then followed up by saying: “Feel free to share useful links to me … I am always willing to learn more!” For these motivated allies out there, we thank you and we need you. You are exactly the advocates we need to help us shake up this outdated system.

Thanks to the internet, Autistic people finally have many pathways to communicate for themselves, rather than having others speak for them or over them.

For the first time in the long, mismanaged, tortured modern history of Autism*, we can know clearly what Autistic people want and need to thrive in life … if only the people holding the power will listen and change.

I’ve found few professionals who understand the connection between Autism and co-occurring conditions: rheumatological issues, autoimmune conditions, poor tone, postural difficulties, coordination and proprioception issues, insomnia, digestive issues, hypermobility (leading to frequent injuries), dizziness and vertigo, heart palpitations, interoception issues (e.g., awareness of messages about thirst, hunger, pain, illness, hot and cold), chronic fatigue and chronic pain conditions … just to name the ones I can think of and personally experience. We need good therapists to help us manage these and statistically we’re likely to be treated by an allistic therapist.

But I can’t help thinking that it would be life-changing if our therapists also truly understood what it meant to walk through a neurotypical world with a neurodivergent brain (and body).

As well as being an author, I’ve also worked in the family business for the past fifteen years. But while previously my role has been about business, now it is most definitely personal, for myself and my family. It seems overwhelmingly logical and important to me that Autistic clients could have the chance to connect with Autistic therapists. Creating Actually Autistic Care is about exactly that – Autistic developed and led support for other Autistic individuals. We know that there are Autistic therapists already out there, working in their fields right now – psychologists, speech therapists, physiotherapists, occupational therapists and, yes, doctors too. Some of them will know they’re Autistic; some are yet to be identified. Some will be open about their diagnosis; some will be afraid to come out to the world for fear of how the outdated narratives of Autism have kept us down.

We need therapists to be out and proud about their identity; to be visible in the mainstream to change the narrative around Autism; to show the younger generations that by choosing therapeutic career paths they can help build more meaningful, appropriate and effective treatments; and to connect with other Autistic people to offer actually Autistic care.

We need care that is driven by and for Autistic people because we’ve been told what to think and how to feel and what we need by allistic practitioners for too long. It’s our turn to lead the way. Our deepest wish is for allistic therapists to take the opportunity learn more, learn from us, and join us in revolutionising Autistic care.

* I highly recommend reading Neurotribes by Steve Silberman for a comprehensive study of modern Autism management.

To hear more about Josephine Moon’s journey, tune in to her podcast, Josephine Moon, Autistic in Residence.