I have just picked up Autism in Childhood, written by Dr Luke Beardon, and there is a dialogue between parent and child set in the future where the child who is born on the autistic spectrum wants to know why the condition needs a diagnosis to be recognised. It asks whether the predominant neurotype (PNT) or neurotypical as it is more widely known, was not diagnosed. The child, wanting to understand even further, was curious to know why persons on the autistic spectrum went to clinics for therapies and needed badges and markers. It was a bittersweet read because you long for that future, but you know the work needs to happen in the here and now.
Part of the work happening is the program for Doctors in training at the University of Sussex called "Time for Autism". Doctors in training (just about their final year) are paired up with a family that has a diagnosed person on the spectrum living with them, and Home visits (about 3 in total) are made. These Doctors get to speak to the family, see for themselves the environment, the family structures and struggles, as well as successes and get to know the individuals themselves. It's a research program more than anything else, and I signed up in a heartbeat. We have had one visit so far from a pair of Doctors, and I felt I was listened to, and there was a genuine interest, but nothing could prepare me for the "Time for Autism 2024 conference" that was held at the University of Sussex on the 11th of January 2024 to bring all Doctor Pairs and families together.
I walked out of the conference taking one mantra with me that was the focus of the conference's panel, based on the evidence they are beginning to see in the health sector: "Assume anyone walking through the door is on the spectrum". Sounds a bit extreme you say, isn't that stereotyping, profiling, what about those not on the spectrum? All valid questions, but one thing I know from my lived experience is when you cater to autistic needs, everyone benefits!
Last year, I travelled to Japan, a country that aims to have 60 million tourists annually walk through its shores in a mostly homogeneous society, and I found out I would have to be completely oblivious to my surroundings to get lost or confused, despite knowing squat of Japanese. Their visual scaffolding with signs, pictures, placement, and consistency across the country passively regulates a multitude of people, 125 million of its citizens and numerous tourists, to be more exact. In my 10 days, I did not observe a sense of panic, confusion, or irregularity in its busiest stations, including the world's busiest Shinjuku Station (that one might notice on the London underground). It was indeed remarkable! Now, visual scaffolding is not just for tourists; there is a saying in Japan. If something wasn't done appropriately, "put up a sign", and this has been their principle for a long time in their culture before the influx of tourism. And here lies my point: everyone benefits by assuming everyone needs a visual aid. I navigated complex interchanges and found my exits to public transportation, with some stations having 200 of such exists by following the signs and staying on the right side of the carefully marked areas of staircases.
So as I sat in the conference, met up with my Doctor pair, and attended the workshops for the day. I began to fill up with an emotion I rarely have, hope. I look forward to attending next year.
To learn more about this fantastic program in its third year running at Brighton and Hove University of Sussex, visit the link Time for Autism. The program is particularly keen to have Doctors in training pair up with parents/carers of diagnosed Girls on the Autistic spectrum as there is still a limited amount of research in this area compared to Boys or Males in general, so do spread the word or sign up if you feel you are eligible.
Other very useful information shared on the day where
Dr Seb Shaw, an autistic doctor with the NHS who talks on varying areas around mental health to experience for autistic doctors https://twitter.com/Autistic_Doc
The Instagram account "neurowild_" https://www.instagram.com/neurowild_/?hl=en
If you want to know about hypermobility and neurodivergence from a medical perspective, Dr Jessica Eccles was recommended https://www.youtube.com/watch?v=xs9PCFOYtEo. This debunks the idea that persons on the spectrum do not experience pain or have "higher thresholds", which Doctors have said back to me.
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