ASDay Articles 2013

These three articles were posted for Autistics Speaking Day 2013, and cover some interesting topics!

Sparrow Rose Jones (Unstrange Mind blog) writes about Autistic History Month. Celebrating Autistic history and culture, she writes about mainstream and community heroes, symbols, books, and historical tragedies and victories. A very interesting read!

Speaking from the shadows, by Nightengale of Samarkand on LiveJournal. The author discusses three reasons why she has chosen not to be openly autistic at work (she is a doctor)- disbelief, discrediting and tokenisation.  She feels that she can currently advocate more effectively without having to wade through these issues first- and hopes to make her community and field a place where one day she can be openly autistic.

But what about those fluorescent lights? (Turtle is a verb blog). While social and communication issues are visible when interacting with others, stimming can be obvious, and issues with change can quickly become so- sensory issues are often invisible. The author outlines the effects of a fluorescent light, suggests some alternatives/accommodations- and appreciates the opportunity to discuss autism and sensory issues with people who enquire about the blue tinted glasses.

Recognising Invisible Disabilities

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.

Adult social care

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?”

OCD

Obsessive compulsive disorder- myths, causes and treatments, by Lynne Malcolm (ABC).  It’s not all about lining up the pens, or washing hands ten times, it’s about intrusive “stuck” thoughts.

‘Someone with OCD about cleaning could have a spotless bathroom. They clean it twice an hour, and yet the kitchen is stacked high with plates with mouldy food. Or someone could wash their hands 10 times an hour, and yet wear the same underpants for three weeks.’

I learned a lot from this article!

Supporting people with invisible disabilities

4 ways to be an ally to people with invisible disabilities, by Sara Whitestone (Everyday Feminism).

As someone who lives with an invisible disability, I struggle on a daily basis to live with my ever-changing abilities. My condition reacts to a variety of factors, so my symptoms vary on any given day. It’s a constant juggle between wanting to do as much as I can without hurting myself while dealing with the social repercussions of my fluctuating abilities. In my experience, strangers confront me every time I go out in public to validate my disability to them in some way – and this is a common experience.

I appreciated reading her experiences and recommendations, especially:

It’s safe to assume that if someone has a certain accommodation, they received it for a reason – but we can never assume what that reason is. It’s important not to police people when they use these accommodations – or if they don’t.

Brave program online

The BRAVE Program is an interactive, online program for the prevention and treatment of childhood and adolescent anxiety. The programs are free, and provide ways for children and teenagers to better cope with their worries.

We were quite impressed with it, as it used many of the same effective strategies we’d seen in our daughter’s OT sessions- and is online and free!

Stigma of invisible disability

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.

The kindness effect

To the hairdresser who change how people saw my child with special needs, by Meredith Howell (The Mighty). The author relates a story of the judgment she and her child experienced in the hairdresser’s waiting room- and how the hairdresser’s kindness and accommodation of her child’s needs changed the attitude of the entire waiting room.  I have seen this happen myself- it only takes one person to stand alongside the family, to change that toxic group mentality.

Conversations around diagnosis

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! 🙂

Aspie life experiences

I’ve just discovered a new-to-me blog called Life on the Spectrum. Some great articles, including a few about adult female diagnosis and life experience.  It’s this latter topic that I’m linking to here:

Symptoms of Asperger Syndrome– a very honest list of everyday life experiences, eg

People call you “sad” for being interested in interesting stuff.
You don’t understand what’s so funny about teasing. You feel you’re being mocked.
You are exhausted by always pretending to be normal, but fearful the Real You will be rejected.
You laugh later, and more loudly, than everyone else.
You feel “different” from most people, and feel that you don’t “fit in”.

Assaulted by the detail– her description of “detail assault” is very thorough and understandable, especially with the specific example she provided.

We aspies can’t help consciously processing a huge amount of input at any given moment, whereas others can just subconsciously filter it out. It doesn’t have to be a sudden event either; a large amount of general input can render me completely dysfunctional given enough time. It’s all about the quantity.

Please, spare a thought for everything else that’s going on in an aspie’s head and, if you spot him going off on a mental tangent, realise his distraction might be conscious, but it’s not necessarily voluntary.