Telling someone they have Aspergers Syndrome (Asperger Test Site). If you suspect someone may have AS- do you tell them, and if so, how? Some insightful questions to consider about whether or not this knowledge would be beneficial for the person, and a few good strategies for how to do so (including links to online tests and articles).
Describing a disability, disease or disorder to someone who doesn’t understand it can be tricky — particularly if the condition isn’t common or visible. Overly scientific descriptions aren’t usually easily understood and ignoring the topic entirely isn’t an option.
Some great informative and creative descriptions here, covering a wide variety of disabilities, eg:
“My son has apraxia, which I explain [like this]: ‘It’s like a marble in a drain. Sometimes the water can pass, other times it gets stuck.’ His speech processing is exactly like that.”
6 things you must know about the disabilities we can’t see, by Julie Zeilinger. The needs of people with invisible disabilities aren’t always considered, their experience is frequently questioned, and sometimes they are accused of lying or making excuses. This can lead people with invisible disabilities to downplay their experiences, which perpetuates the invisibility and stigma.
A conversation that comes up from time to time in ASD groups, is people venting their frustration about how others respond when they share news about an ASD diagnosis. There are certain comments that seem to arise frequently, and I did smile at the answers that Leigh Forbes wrote to these in her article So, did you grow out of it? (Life on the Spectrum blog).
Here is a response I wrote to a similar conversation last week:
I don’t get too bothered by that comment [but he doesn’t look autistic]. When I think back to our pre-diagnosis days, when I knew very little about autism- if someone had told me that their child had autism, I wouldn’t have known how to respond. If it was someone close to me, I might have asked some questions about how they felt about it, and how it affected the child etc; but a stranger- no idea! When you think about it, it’s quite difficult to think of something to say on the spot, so I accept that they’re trying to acknowledge what I’ve shared, even if their response is a bit clumsy. If nothing else, it’s an opportunity to connect, and share a bit of autism awareness! 🙂
A powerful Reddit thread reveals what it’s like to be disabled (Washington Post).
[A] reddit user posted a thread about the lives of people with disabilities. Called “Disabled people of reddit, what is something we do that we think helps, but it really doesn’t?”, the thread received almost 10,000 comments from people with a wide range of disabilities, such as missing limbs, cerebral palsy, severe back pain and rheumatoid arthritis, in just a few days.
Here are 14 of the most common suggestions that people with disabilities made about how to treat them. Some of these suggestions are incredibly insightful; others should be obvious, but apparently bear repeating.
Who are the role models since Helen Keller?, by Janice S Lintz (HuffPost). This article is about hearing loss- the lack of accommodations for it, the stigma (many prominent figures hide their hearing loss, while revealing many other personal facts), and the media’s focus on “inspiration porn” and sensationalism (children with cochlear implants hearing their parents’ voices for the first time), followed by some practical suggestions for communication accommodations.
What’s Your Squawkers McCaw? Creative Workplace Accommodations – Bev Harp. Bev has an animatronic parrot that she takes with her to work. Early on, one of her co-workers asked her what the bird’s function was, and Bev described how it helped her with regulation, smalltalk etc. She then described a few other autistic people, the accommodations they requested in the workplace, and how denying those accommodations negatively impacted both the autistic person and all the co-workers.