This is Autism

This is Autism - do you think we look sad?

I want to take part in the #thisisautism flash blog today in support of having positive conversations about Autism.

I was lucky enough to be asked by Kanchi (an organisation that promotes employment based on ability which is inclusive of people with many disabilities) to contribute to a video they are making for a project called the "Kanchi 500"

This is a national training and awareness campaign where they will train 500 people in their "Lets Start the Conversation" module.
(about disability awareness and employment inclusion"

The campaign is about educating the "normals" as I call them affectionately, in how to be more comfortable around different disabilities in order to promote inclusion or retention in the workforce.

I was asked to represent communication disabilities after my TEDx Talk.




They sent me a list of questions to prepare for, so I will use these for my "This is Autism" post. Of course my specialist topic in relation to communication is AUTISM.

Questions

1.         What phrases/ words do you hate/love  about disability?

Love:
My favourite phrase for autism is "Super-able" because I have never felt that "dis" abled describes my children authentically. And authenticity matters to us Aspies. 
My children have always been super able to open things, climb things, persist with what they want until everyone else gives in. My daughter has proved herself time and again to be Super-able to communicate what she needs despite not having the usual words. My son is super able to over come internal anxiety to tolerate situations that I know he finds internally stressful, by focusing on talking about his favourite things. 

They are both Super able to negotiate any technology put in front of them and make it work to their advantage.

Hate:
"Suffers from" or "Sufferers"
The fact is that autism is a different reality for some people in our world. Perhaps 1/100 people. So to say that we "suffer" from the condition implies that is a medically debilitating disease. 
People with autism can be perfectly happy and comfortable with themselves if everyone around them gets with the program and deals with it. This means making sure that the right educational accommodations are made to allow them to be taught the way they learn. That they are given time and space to be themselves, in intervals with having to comply with the needs of others. 
And that they are not being influenced by other people's negative attitudes to their condition. 
I love my Aspie/Hyper characteristics and can not imagine being any other way. Anxiety and conformity aside, I think both my kids are pretty happy with themselves too. Interestingly, Grace would be considered the more autistic of the two and she is also the happiest with herself. Neither of them care what other people think and that is a great strength to them and a comfort to me. 

2 .       Does language matter?

We must speak with this voice of hope and positivity for the sake of the parent who has just walked out of the Pediatrician's office with the diagnosis of Autism - who needs to be encouraged and inspired.
Putting on record a description of Autism that sounds like a Life Sentence of Misery  seems like a self-fulfilling prophecy to me. If you convince that newly diagnosed parent that everything is hopeless then you could be disconnecting them from every avenue of positive intervention that could give them and their child the chance to live a happy and fulfilling life. If the parent sees the child only as a negative liability, they may close their minds to education in ways to support communication, reduce stress and anxiety and teach life skills in a way that the learner learns. 

Or worse, they may see Autism as a Disease to be cured by any means and pursue snake oil cures or intensive therapies that are not evidence based which actually increase stress and anxiety for the child.
They may also put off accepting and educating themselves about the culture of Autism in the very misguided belief that they don't have to, because their child will be "cured" or worse "recovered" 

(I find "recovered" worse than cured as it implies that the child was missing, like a sock lost in the wash. I don't like "cured" either, but at least that implies the human is present)

Dehumanising language can also lead to genuine cruelty - where the diseasification of autism makes it perfectly acceptable to subject a child to inhuman suffering. Seriously, if you caught someone giving their dog a bleach enema what would you do?

And yet every day, someone somewhere is subjecting their child to some kind of quackery. Maintain the humanity of the individual and you will find it much harder to spend their resources for tolerance so wastefully.

3.       Does humour have a place in the language/ communication around disability?

Hell yes! It is okay to laugh at Autism. In fact I do it every day. I live with 3 people with autism so I am very proud of the fact that the smile and laughter lines on my face vastly outnumber the frown lines.

My husband is one of the rare Aspies who is NOT a systemizer. So watching him trying to work out how to put an usual object like an ironing board into the boot of the car is like 10 episodes of your favourite comedy sitcom.

My son has a very sharp mind when presented with visual supports. In fact I am certain he will make me a tech billionaire eventually. He thinks that what is printed is fact, so ever since he could wield a pen or create a word document with jpegs and appropriate use of punctuation... (since he was 5 basically) - he has created his own visual self actualizations:

For eg: Mummy says when I go to the video store with Daddy I may only rent "Good films" Therefore if I make a paper sign that says:"Good Films" and place it over the sign in the video store that says "Horror/Thrillers" I may convince Daddy to let me rent a thriller. 
(it worked) 


However, when presented with only verbal instructions he struggles as there is a delay while he tries to visualise what you want. So when he is showering and I am verbally instructing him to wash named body parts he is often one or two moves behind:

I say "Now wash your forehead" and he puts the sponge to his now rather hairy teenaged bottom... (I'm sorry but when you can still imagine your child as a tiny infant, the fact that they have a large hairy bum is hilarious)

4         Do you have an example of one very funny/ bad interaction?

We live in Ireland where disabilist hate crime is almost non-existent and we also live in a lovely seaside village where everyone knows us and makes allowances for our quirks. 

My son really loves videos. We go to our local charity shop several times a week so he can search for a video which he has to bring to the counter and pay for using appropriate social language.

Thanks to our economy, this charity shop is booming and they have special events where they collect themed items to suit a seasonal event, closing for a few hours to dress the store appropriately and then open again to some fanfare. 

Last Halloween, I forgot about this and having promised Liam a trip to the store after school, I had to explain to him why it wasn't open when we got there. I took him for a walk to get a soda and some crisps and returned at the scheduled time to find a queue had formed in anticipation of the amazing bargains. Liam was nonplussed. He does not do queuing at the best of times and certainly not in the context of a St Vincent de Paul charity shop, But luckily it was right on 4 o'clock and the door was opening and he just rushed through, bumping up against a couple of elderly ladies who were leaning on walking canes as they too, waited in line to get their hands on a few pumpkin shaped candy buckets and black cat masks (!?!)

One of the ladies hurrumphed and turned to her friend who was a regular in the store and had seen Liam in his video quests. This lady responded to her friend's anticipated umbrage by leaning in close to her hearing aid and "whispering" 

 "ITS OKAY, HE'S DIS-ABLED!!!!"

And the friend nodded sagely, picked up her walking cane and made her way in to the store.

I laughed and laughed and loved them both for their honest tolerance.

And Liam got his video. 

xx