I believe in my vision. I hope you will, too.
Humour me and read this page, please: even if you have a healthy helping of scepticism.
I challenge you to not get excited by this project!
First things first, though: what is TAHCS?
TAHCS is an acronym for The Autism Health Care Services. I had the epiphany (THAT’S what we need!) one night recently, as I was laying there, doing my best to convince my brain to go into “sleep mode” (not sure who was winning at that junction).
Here is the deal:
I have spent 35 years in hospitals: 7 years or so as a patient, 6 as a medical student, and the rest as a doctor. During this time, I have experienced 4 healthcare systems, in 4 different countries, on 3 continents & one island. Each one system was unlike any others.
but some things have remained stubbornly the same. and healthcare received by autistics has hardly improved.
I have e
- Doctors especially, but generally most HCPs, were described as clearly less than sympathetic. No, strike that. Doctors were experienced by many as rather self-important, patronising & frequently incompetent a**holes with fragile egos, who were too lazy and/or too arrogant to question their own assumptions, let alone cope with patients’ disagreements or admitting their mistakes.
- On average, an autistic person (if such exists!) has higher healthcare needs an average NT. Epilepsy is more common in autistic people. It is estimated that between 20% & 30% of autistic people have epilepsy (and about 20% of epilepsy patients have autism). There are numerous suggestions that autoimmune disorders, such as asthma, are too, more common among Autistics. Not to mention, of course, a host of Mental Health problems.
- For an autistic person, “a hospital” doesn’t sound much better than a “torture chamber”. The reasons for this are many & complex. The doctors (and other HealthCare Professionals – aka HCPs) with their dismissive attitudes are certainly not the only reason.
- Here is a list of my own observations. It’s based on my own experiences: as a patient myself, as a member of the patient’s family (“carer”, “Next Of Kin”) and as a physician with 20 years of experience in 15 specialties and subspecialties (most years >7) in Psychiatry, followed by General Practice Advanced Training (4 years) and Paediatrics (1 year).
- Loss of sense of control
- Break in the familiar routine
- Overwhelming non-sensory information
- Overwhelming sensory signals
- A: people, sensory signals, medical information, physical surroundings, daily routine, procedures, medication…
(Please feel free to add whatever else you think is important on this list: for you, personally, or for NATs in general. Your input will be considered & taken into account to the greatest extent possible in the planning/implementation stages of this project.)
Why do we need it?
I believe strongly that everyone has equal right to quality healthcare. Unfortunately, those who need it most are usually least able to afford it. Considering that only a relatively small number of autistic adults obtain AND sustain some kind of paid employment, they often fall in this “too poor to afford being healthy” category.
Therefore, I aspire to fund the project by a combination of donations, sliding scale charges for our services and attracting big investment.
This is not impossible. The Mayo Clinic in Minnesota, USA, demonstrates you can run a world-class healthcare enterprise on the world-scale while providing the enviable employment conditions for the staff AND never turning away those who can’t afford their modest charges.
We will seek out clinicians (i.e., nurses, physicians, nursing aids: in other words, everyone who comes into clinical contact with patients) who have a good track record: highly competent professionals with personal experience of autism. Many highly educated NATs are professionals with valuable skills who struggle to fit in the NT-dominated work-place. “Autism-Doctor” will welcome & nurture them, helping them to reach their fullest potential..
I have experienced the hurt & humiliation of not being heard by doctors, too: as their patient; as a junior colleague during the years of seemingly endless postgraduate professional training aka “being a junior doctor”; even as “the family” – e.g., “the patient’s family” (as used in the expressions like: “the family want to complain”, or “the family want to speak to the [patient’s] doctors”). YOU WILL BE HEARD here. YOU WON’T BE DISMISSED.
Every employee will be supported through a comprehensive induction/onboarding programme that will ensure a baseline level of “autism literacy” among all staff, with special focus on NTs.
Positive discrimination in favour of NAT persons will be written into our recruitment policies & procedures. It means that we will ALWAYS give the right of first refusal to a NAT candidate for a position, ceteris paribus.**
Moreover, it is my hope & aspiration that “Autism-Doctor, Ltd” will in time be approved as a training hospital, supporting training of clinicians on the spectrum & able to share the unique organisational experience & the philosophy of the enterprise foundation with external NT colleagues (clinicians & managers alike) as thoughtfully structured & carefully guided, closely supervised 2-4 weeks-long secondment placement (or unpaid internship).
Our Mission: ensuring that everyone
working in healthcare – from frontline professionals to commissioners to policy-makers – has achieved minimum understanding of autistic healthcare needs.