On a group I am part of, actually, the one I am running a start up group for autistic women here in my current town, someone posted an article from the Toronto Star high-lighting the, frankly, abysmal state of resources for adults with Autism. It can be found at the hyperlink right there. The author points out a very stark and serious issue that we run into time and time again with getting accomodations, many of which are painfully, ridiculously simple in application, and how damaging it can be. Ontario, and many other places in the world, completely lack plans for implementing more accessible services for Autistic people, from transporation to cognitively and sensorily accessible information at places of business. A few of my own personal examples are the fact that I have a difficult time travelling alone and even fear for my own safety when I do so because regular transit systems are not equipped to accomodate someone like myself who has visual dysgnosia and placeblindness. I also find it difficult to parse information about things I am about to do, and follow the instructions to perform bureaucratic functions necessary to daily living. Most people take these things for granted and assume the information is implicitly understood.
The issue of resources for Autistics is not one of a zero sum game of singular, easy to understand issues or impairments. There is a fundamental misunderstanding of Autism behind the lack of implementation I believe. That is why I have designed a proposal that I believe can have far reaching effects, and even reach the level of curb cutter effect. I have put together a quick mockup and a pitch that I am going to be giving to my doctor on Monday when I see him for a check up on my vocal paresis. This resource I have designed is designed to serve Autistic people in the arena of public health and I believe it is a cheap, easily implemented solution that any business can take up ASAP. In fact, I strongly encourage anyone reading this to share this idea in their towns.
Here is the mockup and pitch(the mockup is hyperlinked as a PDF below). I have also added a jpeg and quote of the information as well:
The purpose of the Pictoral Map Prototype:
I have designed this quick and simple mockup of an idea for a cognitively accessible pictoral map of basica health procedures which I believe has wider applications for dealing with public procedures in general. Inspired by social stories, and PECS(Pictoral sequenced instructions for activities of daily living) developed for autistic children and my own experiences dealing with autism and iatrogenic anxiety, I have developed this quick and easy way to give information to cognitively or intellectually disabled patients, as well as patients with iatrogenic and social anxieties.
The purpose is to give a patient a quick overview of a procedure that they are about to undergo in simple English that is easy to understand. The accompanying pictures give the patient a physical and visual input about what they will undergo, thus relieving them of anxiety based in fear of the unknown. The reason I have developed this quick mockup is because Autistic people and those with anxieties need much more concrete answers and descriptions of procedures. For us, we miss what is implicit and our fear of the unknown can cause severe anxiety. Many doctors, especially dentists, opt to put an Autistic patient under General Anaesthesia to reduce likelihood of meltdown or panic within the office and make the patient more agreeable. Often, the patient is scared because they simply do not understand what is going to happen in the procedure and due to receptive language impairment, a verbal explanation of an exam is insufficient for most people on the Autism Spectrum. Furthermore, when it comes to anxiety, exposure is the best form of therapy to reducing severe responses that can further impact a patient’s health such as vasovagal syncope or psychogenic seizure. Exposure can come through many media and sensory modalities and visual modalities which put the patient at ease have been shown to significant reduce anxiety.
As a patient with Autism and anxiety, I often have trouble understanding the implicit and the indirect. I also have a receptive language impairment that makes it hard for me to understand what I am being told. Adults also have Autism, intellectual disability and many other impairments that make getting basic procedures very difficult to endure. Instead of making the patient more agreeable, we should offer every patient the ability to reduce their anxiety and understand a procedure in a way that is designed with them in mind. I also believe this can have a curb cutter effect in that it can be helpful to people just learning the language of the place they live, in this case, English, as well as people with physical sensory disabilities such as Deafness. I believe this type of information organisation can have far reaching effects in making patients happier, and healthier. I also believe it can prolong the lifespan of many people with certain types of iatrogenic phobia that choose to forgo health procedures to avoid facing their fear and dealing with the panic.
I hope you are interested in my idea and can find a use for it. I plan to perfect it as well as add different types of modalities such as an app, and brochures for specific procedures.
As you may have guessed, one of the big issues with resources for people with Autism is the problem of cognitively inaccessible public spaces, particularly in the healthcare sector. It is prohibitive to go into a place and not know what to expect, or understand what is going to happen, and not have a clue of what you’re supposed to do. It hinders what all parents dream of for their developmentally disabled children, and which parents of neurotypical children take for granted; that is, full independence in adulthood. I firmly believe independence in adulthood can be achieved by making small, low cost changes to public and health sectors that make it easier for people to access, both cognitively and sensorily. It is a small and deceptively simple step, but it had to come from someone with the experience to know what is needed. Too often the people in charge of allocating money toward resources are neurotypicals without any lived experience in a disorder themselves. We all know about Autism Speaks. No offence meant to all you neurotypicals out there who read my blog, but even if you are professionally trained in dealing with my people, you do not have the lived experience to understand the most intimate of our needs and impairments. You will never understand how to ameliorate them. Until you start listening to us, it is up to us to make you listen to us.
Full inclusion and integration into society is what is going to help us achieve our full potential and realise our needs. We start small and we build up from there. The article linked above calls for “an end to barriers” without so much as stating what they think that means or as to what those “barriers” are. Well I am telling you what those barriers are and I am attempting to remove one of those barriers in achieving our independence and full integration into society.
For those of you who ARE Autistic, please tell me what you think about my idea and how you think I could improve upon it. It is a very rough idea right now born of the need to ameliorate a barrier to my own life. I am not every Autistic person. Please tell me if there is anything I could improve upon.