The UK’s National Autistic Society has some great resources, including this hospital passport. It can be completed either online then printed, or in writing, in advance of any hospital visit- and I think would be good for any medical appointment. As well as the usual personal details, medical history and contact details for the patient’s significant people, it includes boxes to describe how the Autistic person would like hospital staff to communicate with them, how the Autistic person communicates, experiences pain and communicates pain, and what causes distress. The guidelines document contains many questions to consider when writing statements to include in the hospital passport. For example, when considering how staff are to communicate with the Autistic person- do questions need to be short and specific, do you need things written down, is there a preference for pictures or symbols, will pointing/demonstrating help, will you need a lot of time to think about and answer questions? The final page describes the five key principles of the Mental Capacity Act, and states “Because I have autism please do not assume that I do not have mental capacity”.
The Guide, Hearing and Assistance Dogs Amendment Bill has been passed in Queensland Parliament, allowing for alternative handlers to assist a primary handler (eg a child with disability), authorising trainers to issue handler identity cards, and removing the need for handlers to prove their disability when renewing identity cards.
Ann Memmott has written an article about Autism Basics, called “When ‘I’ll be back in five minutes’ isn’t true”. This literalism isn’t psychological, or controlling- it’s a brain wired for detail and accuracy, and trying to manage sensory overload. She gives good descriptions about what is happening in her brain and environment during (and after) those five minutes, and some alternative suggestions that might be more helpful when communicating with Autistic people.
After attending a disastrous meeting, the author outlined several strategies to make meetings more autism-friendly. Some of these included skipping initial introductions, don’t allow one or two people dominate the conversation, provide paper/email address as alternative methods for people to submit their ideas, and ask in advance what accommodations people may need.
There are so many things I like about this post! It starts with a Youtube clip called “I’m Brianna Couture”, three girls all posing as 15-year old Brianna Couture, who all describe Brianna’s invisible disability- but it’s not till the end of the clip that the girls divulge which of them is the “real” Brianna Couture.
Too often, when discussing inclusion in faith communities, I have heard: “We don’t have any members (of our congregation) with disabilities, so we don’t really need to think about inclusion.” Really? There are NO members with disabilities? Watch the video again.
We don’t “do inclusion” for our members. Rather, creating an inclusive community is about being ready. When we wait until someone comes through our doors, often it is too late and the accommodations become reactive. True inclusion is proactive.
Disability Services Queensland has put together some great resources about how to communicate with people with disabilities, and additional tips about guide/hearing/assistance dogs. Towards the bottom of the page, there are several links- two in particular are exceptional.
The first is “A way with words: Guidelines for the portrayal of people with a disability”.
The purpose of this booklet is to promote inclusiveness and the fair and accurate portrayal of people with a disability. It is intended as an aid for professional communicators, such as journalists, writers, producers and broadcasters, and provides suggestions for appropriate language, interviewing techniques and media coverage involving people with a disability.
While that description does sound rather dry, the booklet is very engaging and readable, with great cartoon illustrations throughout. Some of the recommendations include emphasising individuality (eg emotions, interests, problems, talents, frustrations, faults and roles), not disability; avoiding superhuman or excessively emotive portrayals, and not focusing on the person’s disability unless it is important to the story. There is also a list of words to avoid, with acceptable alternatives. One suggestion given was to use the phrase “uses a wheelchair” instead of “confined to a wheelchair” or “wheelchair bound”, because a wheelchair provides mobility, not restriction.
The other link that I found useful was the Medical Signing Board. There are Yes/No/I Don’t Know options across the top, front and back models of the body in the middle, 15 options for medical issues on the left (eg hot, cold, vomit, headache, bleeding, broken, seizure), 12 communication options on the right (eg need more information, call someone, worried, too loud, hungry), and a visual 1-10 pain scale at the bottom. The second page lists some things paramedics might do (eg blood pressure, take temperature, bandage, medicine), a short social story, visuals for wait/be still/calm down, and some interaction tips for the paramedics. Very thorough- wish I’d had this for Abi’s last admission!
Here are some great resources promoting disability inclusion in the church. While written by and for different denominations, the information and suggestions would work across most church communities.
The Diocese of Oxford has put together a very thorough 23-page booklet called Welcoming Autistic people in our churches and communities. It’s a very practical set of guidelines, explaining some of the features of Autism, and some quick low-cost changes that can make a huge difference for Autistic people (eg change fluorescent lighting, check noise levels, give clear instructions, explain any complicated language either at the time or later, warn of physical events, have a quiet/rest area available etc). I especially liked the “hard” and “easy” descriptions of an Autistic person visiting church.
Based on the above booklet, is this checklist for How Autism Friendly is your church? Readers are encouraged to consider the place and environment, events and what is going on, and people and social activities.
This clip, by Rev Malcolm Duncan, senior pastor at Goldhill Baptist Church, is fantastic- says it all. I highly recommend listening to it. He talks about how disabled people are treated in the church, and the church’s mission to, with and alongside people with disabilities. People with disabilities are not first and foremost people who have something wrong with them, they are sons and daughters of the living God. Inclusion isn’t about ramps and loos, as important as they are, it’s about heart and attitude, it’s about a change of mindset that sees people, not as objects of charity, but as equals.
Making churches accessible– this short article has some simple suggestions for how to make church services accessible for people with learning disabilities.
“Evidence suggests that churches that have actively made their worship services accessible to people with learning disabilities the services become accessible to many others; people with poor literacy, for those whom English is not the first language, people from un-churched backgrounds who have no experience of Christian language, and increasingly for people with dementia.”
The author of this article was diagnosed with ASD in her 40’s, and while appreciating it as a more positive label than those she’d previously received, she also struggled greatly with the subsequent non-existent support.
The assumption that we must have worked it out by now if we’re still walking, talking and have a pulse can hide a grim reality of difficult, isolated and unfulfilled lives. Sometimes someone just giving me a reality check of the “have you eaten today?” kind would be useful.
Left to my own devices, I turned to the internet, where I discovered there were others out there trying to make sense of it all too – an online tribe for the tribeless, a diaspora of aliens in a neurotypical universe.
In the long-term, diagnosis has allowed me more self-forgiveness and self-understanding and I’m much happier because of it.
But some support in reaching that place would have been useful. So would occasionally being asked: “Do you need any help?”
This lovely idea is a great way to minimise bullying and increase inclusion. A young boy, having seen a similar idea at a school overseas, raised it with his principal and school board, who agreed to implement it. Kids who feel lonely at recess can sit on this bench, and be invited to play or walk with others. The website has several different strategies with which the benches can be used- Christian’s Buddy Bench.
The difficult parent is a very encouraging article, outlining the reality of parenting a child with special needs, and the “above and beyond” nature of their advocacy, even when it’s uncomfortable for them.