The A Tribe

What do Lionel Messi, Chris Packham, Ladyhawke, the creator of Pokemon & Jessica Applegate have in common?

Answer: they're autistic.

Their autism may not be the first thing you think of when you think of them ~ it's not what they're "known for" ~ & that's OK, actually; that's how it should be.

But I wish more people knew they were autistic too.  I wish more people with autism were known about ~ that more autistic people would "come out" about their autism.

Why?

BECAUSE WE NEED MORE AUTISTIC ROLE MODELS!

There must be more out there, in all walks of life.  How do I know this?  Because more than

 1 in 100 people in the UK are thought to be autistic*.  

In the US it's 1 in 59**.  

Yet where are they?  Who are they?

Some deliberately keep their diagnosis secret.  And I understand why: they worry about how others will react, they don't want it to define them; so much focus is on what autistic people can't do, rather than what they can do, on the negatives rather than the positives, or celebrates the very small percentage of autistic savants who exhibit extraordinary skills in one particular area of specific interest.

And people tend to fear what they do not understand & that fear is heightened by the myths & misinformation that abound about autism.  And what people fear they flee from ... or fight against.  

But if autistic people remain "hidden" or below the radar ~ if we only see the extremes of the condition ~ how can people learn what autism truly is?  How can people understand the full autistic spectrum?  

And, more importantly, how do more autistic people learn to feel good about themselves?  Because many need help in that regard, believe me, much more than most "ordinary" people.  

But, I hear you say, what about Mozart?

What about Einstein?

Yes, yes, they're all well and good. And, actually, I know one child who was very happy to have their brain compared to that of Einstein because they like science.  

But that didn't work for another child I know.  

They need, as any X-Factor judge worth their S.A.L.T. (in joke) would say, role models who are more "relevant", more "relatable", more "current" & recognisable.

And this is where Lionel Messi, Chris Packham, Ladyhawke, the creator of Pokemon & Jessica Applegate come in, to name but a few (actually most of the few "relevant" I've been able to identify).

  There is no one good reference point I've found of such role models.  And I wanted one ~ to put in front of those close to me who I see suffering with low self-esteem, feeling like they don't belong anywhere, feeling that they're somehow "less" because of their diagnosis.  

So a few months ago I created a board on Pinterest called

 "The A Tribe"   

A resource that's accessible to anyone who passes by but created, at the time, for one person in particular who also uses Pinterest & might see my pins & begin to think, well, if they can, so can I ...  maybe this autism thing can be quite cool after all ... maybe I do have some very special talents & unique insights that I can put to good use ~ that make me stand out for all the right reasons. 

There aren't a lot of pins on this board yet!  But I will add to it & I'm appealing now for any suggestions you might have too!

*There is no exact figure for the number of autistic individuals in the UK as it's not something this country formally records or tracks.  The 1 in 100 figure is derived from the results of a couple of recent prevalence studies applied to the 2011 UK census figures which indicates that 1.1% if the UK population are autistic (source: National Autistic Society).

**In the US the figure is 1 in 59 (according to The Centers for Disease Control and Prevention).

And as understanding of the condition grows, as more people are diagnosed, often later in life, it's highly likely the prevalence is greater than these figures suggest.

Lionel Messi via Pinterest

  

Clearing the Clutter

The time has come.  

It's time to Clear the Clutter.

Our "house-full-of-stuff" has become a visual metaphor for the autistic brain reaching reception capacity, on the verge of overload and meltdown from having to cope with 
 too much information.

If I'm to avoid overloading the house with more stuff ~ and the possible meltdown of one Mr family member in particular ~ I need to create some capacity, quickly!

Like the autistic brain ~ which finds filtering unnecessary information and sensory stimulii extremely challenging ~ I've been very adept at collecting stuff but not so very good at offloading stuff, especially the kids' stuff (ever).

It's good stuff: useful (to someone, if not us any more), decent quality, pre-loved, much "as new", all evoking happy memories.  All reasons why I've held onto it (OK, hoarded it).

There's so much stuff we can't easily access the stuff that's still useful, still enjoyable.

We're really at a point where we can't fit any new stuff in.  And I like new stuff!  New stuff that will be more useful than the old stuff, that we can also enjoy and link to new memories.

In short, not enough old stuff is being filtered out so there is not enough capacity for new stuff.
Just like the autistic brain!

Yes, we've had a couple of garage clear outs of ~ quite frankly ~ 
c£@& stuff.  The garage being the metaphorical equivalent of the autistic brain's meltdown as, usually in a fit of pique and lacking any other rational thought or idea, it's where we've chucked any overload from the "house-full-of-stuff" that we couldn't think how to contain within the house anymore. 

In the past, as a means of avoiding overload, I've given away a lot of stuff ~ the autistic brain's equivalent of turning on a release valve, of avoiding overload by withdrawing or zoning out for a bit, like reading or watching TV.  

A sort of "clutter clearance channel".

But I was working then and I could afford to give stuff away.  Now, having given up gainful employment "for family reasons" (and halving our household income in the process), I've been reluctant to give away quite so much ~ promising one Mr family member that I'd start selling the good stuff as my ongoing contribution to the much depleted money coffers.

And therein lay the problem.  Removing the "clutter clearance channel", or release valve, of "giving away" stuff without immediately identifying an alternative, cash generating, "workable for our family" autism friendly "clutter clearance channel" has meant this house and the garage are now both fully full of stuff!.

But, after four years without one, I think I've finally found a release valve to suit.  

Hello local Facebook selling pages.  

All I need is a camera (check), a cash collecting jar (check), an ability to communicate via FB (check) and to arrange mutually convenient collections in exchange for cash (check) ~ oh, and a lot of stuff and clutter (double check) ~ and I'm away.

Clearing the way for my house ~ and its inhabitants ~ to function again, to work in the way it needs to today.  Like allowing the autistic brain to rest and empty itself of some of the stuff it doesn't need, to reach a point of "calm alertness", with sufficient capacity for more information to assimilate and be made use of.  Little and often, pre-empting and avoiding the overload, opening the way for the garage, too, to be put to better use!  I'm thinking potter's wheel, yoga...teenage den...man den...teenage and man den combined?.  

And I thought I could assuage the guilt of not "giving away" by doing some good in a different way.

So, returning to the metaphor of this story, and to highlight their Too Much Information campaign, I promise to pass on 10% of any money I make from Clearing the Clutter (I've got a lot of stuff and clutter) to the National Autistic Society to contribute in some small way to the understanding, acceptance and accommodation of autism.  

After all, that's why I'm doing this.

#AutismTMI

#AutismHour

#differentnotless  

#cleartheclutter

via HIPPYBEACHGIRL.TUMBLR.COM on Pinterest

A book review : Can I tell you about Pathological Demand Avoidance syndrome?

Can I tell you about Pathological Demand Avoidance syndrome? is a great little book by Ruth Fidler and Phil Christie that can be read over a couple of cups of coffee but still contains enough to be usefully informative about Pathological Demand Avoidance, or PDA ~ a condition that forms part of the autism spectrum.

After the foreword and introduction, the first 31 pages (illustrated by Jonathon Powell) are written in the voice of Issy, a 11 year old girl with PDA, who describes what life's like for her and what can help.  This part of the book aims to be particularly helpful for young people to read, to learn about their own PDA, or someone else's, and is recommended for readers age 7 and upwards ~ assuming they're open to reading about it!

Then, over the following 8 pages, the authors describe further how all adults ~ carers and professionals ~ might work together to best support a child with PDA, exploring a list of 12  key things that can be done which combine to form what the authors call an "altered approach" to helping.

And, believe me, a very specialised approach is definitely needed ~ at home & in education especially ~ to help someone wired to avoid demands (demands that the average person wouldn't even recognise as demands) and whose need to be in control increases in line with their level of anxiety as they try to manage that anxiety.

As a parent of a child with PDA, I'd say this book clearly, simply and empathetically describes what PDA is, from the point of view of the person with PDA and the people around them. 

Importantly, I believe it's a very accurate reflection of the condition, what lies behind the behaviours it causes, and the approaches that work best to support ~ there was nothing in this book I didn't recognise or agree with!

In fact, I found this book really useful in forming a summary checklist of how autism, or PDA, manifests itself in my child(ren) ~ developed for the purpose of sharing with any new adults in their lives (eg new club leader, new orthodontist, etc) who just need to understand what their differences are, what their behaviours mean and how best to engage with them to gain their trust and cooperation. 

For the complete novice this book is a very useful introduction to PDA, providing a quick and efficient way to understand PDA and how it differentiates from, and overlaps with, typical autism (if autism can ever be typical), so it's good to share with family, or school, for example, or anyone who needs to know but is not keen on reading lengthy tomes!

For those already living, or working, with PDA it's an equally useful reference for developing a better approach to supporting someone with the condition.

Links to further reading:

What is Pathological Demand Avoidance? on the National Autistic Society website includes more useful information (contributed to by Phil Christie), further reading suggestions (including this book) and links to other online content including the PDA Society.

So, what are you waiting for?  Pop the kettle on!  

People who stoop to make children feel tall are my kind of people.

Counselling, Clay and Chakras

Some 'c' words!  

Finally, I've carved out some time to pursue some asides.

A good chunk of my week is currently devoted to 3 purposefully chosen 'c' words.

Counselling ~ an introductory course to Counselling Skills that certainly won't qualify me to practice but will help me to determine if counselling could appeal as a new career path.  It's positively challenging, pushing my self-awareness beyond that provoked by recent experiences & past events, & promising to enhance my personal skills at the very least.

Clay ~ possibly the ideal antidote to an intensive evening of Counselling Skills, I spend the following morning potting with clay.  On this course I get to be creative (or at least try to be), revisiting an 'old love', indulging in the process of making, ridiculously excited about being given a piece of clay to practice with at home!

Chakras ~ then, after indulging in being creative my self-pampering steps up a gear with some restorative yoga.   Proper 'me' time with a spot of mindfulness & meditation.  I've yet to work out my Chakras, if I'm being honest, but I'm sure that will come with practice!

So, all in all, feeling properly chilled (and self-indulgent)!

In a few weeks I'm sure I'll be calm personified, hopefully with a clear idea of what to pursue next ... the idea of a retreat combining all 3 (a suggestion made in jest by a very dear old friend) sounding like a quite brilliant idea after all ... autistic friendly, of course!

I have missed this though ... but, for now, homework calls!

Hoping to be back very soon.

via Pinterest (original source unknown)

Autism Awareness Advertising

It's Autism Awareness Week & Sunday, April 2nd is World Autism Awareness Day.

I'd planned to be more active than usual this week, to amplify any messages arising out of these much needed initiatives.

After all, contributing to autism awareness was one of the reasons I created this space.

But, instead, I've needed to pay more attention to autism at home.  That's just the way it is ~ I'm nothing if not flexible!  And, actually, any day is a day to promote & appeal for awareness, acceptance, understanding & accommodation of autism & autistic individuals.

Having said that, I stumbled upon an available half hour or so, & I had this draft post ready to be revisited, so here I am, assuaging the guilt of not having supported Autism Awareness more so this week with the work of another who, in my view, has done a pretty good job at illustrating & highlighting some of the characteristics of autism.

It's an autism awareness advertising campaign I stumbled across at Behance.net created for the Autism Society of Pakistan by Hina Nazi.  I've copied out the copy, so to speak, for ease of reference but I think the strength of the campaign is really in the imagery & headlines.

Perhaps a little has been lost in translation, but I do have to say that I don't agree wholly with all of the wording used in the body copy & I have resisted the temptation to tweak ... but, then again, I must put on record that I would substitute 'temper tantrums' for 'meltdowns' as the two are very different.  Another day I may expand on that!

I hope it's helpful.

Hina Nazir via Behance.net 

MY BRAIN CANNOT FILTER OUT INFORMATION

Autistic individuals may be unable to filter out unwanted information and therefore perceive all the stimuli around them.  Such 'acute perception' brings an overwhelming amount of information which their brain has difficulty in interpreting.

Hina Nazir via Behance.net 

MY SOCIAL SKILLS ARE BROKEN

It is difficult for an autistic individual to interpret overt emotional expressions by other people, for instance facial expressions and body language.  Likewise they have difficulty communicating what they want to convey.

Hina Nazir via Behance.net 

MAKING EYE CONTACT IS QUITE DEMANDING

Making direct eye contact with people may be an overwhelming act for an autistic individual since it may be providing more information to an autistic individual than it would to an ordinary person.

Hina Nazir via Behance.net 

MY SENSES WEIGH ME DOWN

People diagnosed with autism may show signs of sensitivity towards one or more of their senses.  For example, people talking in a normal tone of voice may seem too loud to the point of being unbearable.

Hina Nazir via Behance.net 

INSTEAD OF WORDS THERE ARE BLANK SPACES

Autistic individuals may exhibit a limited vocabulary.  Therefore vocal communication may be hard for them, especially when they simply do not have the words to describe their feelings.

Hina Nazir via Behance.net 

MY EMOTIONS MAY EXPLODE

As autistic individuals have profound difficulties in understanding others and in communicating with them, it is hardly surprising for frustration, anger and anxiety to build up that can lead to temper tantrums.

Hina Nazir via Behance.net 

NO TWO AUTISTIC INDIVIDUALS ARE ALIKE

People with autism have varied skills, interests, abilities, characteristics, gifts, talents and needs.  No two autistic people experience it with the same intensity.  Their symptoms may vary from mild to extreme.

A Desolate Man

As Autism Awareness Week nears I thought it might be timely to provide a view of autism from a different perspective & so I'm sharing a story written by one of my children.

I say written.  Actually, it was dictated.  Writing can be a challenge for autistic people.  Or rather, processing what's being asked, formulating a response & then translating that response into the written word ~ all in one go ~ can be a challenge for autistic people.  There are a number of ways to help, but one that works well for us at home is to create a relaxed environment & wait for the spoken words to flow (& in so doing reduce the length of the process).

Then we capture those words as best we can, scribbling or typing furiously, or recording.

This has often resulted in some pretty amazing authoring, in my opinion.  One day, I heard about a writing competition for kids so I though I would encourage a submission.    

We got comfy & this is was the result, word for word.  It's not necessarily about autism ~ but it could be ~ but it's an illustration of an autistic brain at work. 

A Desolate Man

by my child

A desolate man waiting to be reborn.

As a man, it's like he's never going to survive.  

His desolate & trembled life, it's so cold to be him.

This man is so poor & so old & so ragged & no one really cares.

"Yeah, my life is pretty pointless."

"Every day is like I've just gone to hell."

"And now I'm singing through my feelings because I don't want to hold them back."

"I've got to make sure my life doesn't hold me back because, at the moment, everything in my way is going to."

"I've got to make sure no one is there."

"I've got to make sure I've got my own space."

"I've got to keep going."

"That is really something, like something in my tummy.  I probably just ate nothing but if feels like all my organs & my body are broken."

As this man's hope has started to fade away, the only thing he wants to see in his life is his wife.  She hasn't seen him for 20 years.  It's something he's been willing forever.  Now is his time to shine.  This man's heart is beating fast as they start to notice him.  His wife remembers him from years ago & they re-join together as one.  This is how this man's life goes from bad to good.

"It's been 20 years since I saw you."

"It's been way too long."

"Then let me join this calm & happy life on the beautiful coast of Scotland where people have joined together at so many events, I can't even say."

The End.


One characteristic of autism can be to have an idiosyncratic way of speaking.  Another can be a tendency to be over sensitive ~ to feel things more acutely & more deeply.

I think this story provides a small insight into both.

We don't know about the competition yet. 

from awelltraveledwoman.tumblr.com

Albert Einstein said ...

"Everybody is a genius.

But if you judge a fish by its ability to climb a tree

 it will live its whole life believing that it is stupid."

Albert Einstein

For many autistic children, achieving to their potential at school is a bit like being a fish trying to climb a tree.  Or, more to the point, it's like being a fish that looks like a squirrel, in a class of squirrels, trying to climb a tree.

Being a fish out of water ~ trying to cope in unsuitable surroundings ~ is stressful in itself.   But to then be judged on your ability to climb when you were built to swim & having your climbing ability compared to that of squirrels, well, that's tough.

I know a little angel fish who tried to climb trees for years.  In hindsight, this little angel fish did pretty well ~ looking like & thinking it was a squirrel, the little angel fish was determined to fit in & be like all the other squirrels.  The real squirrels scurried up & down & between trees & socialised without a second thought.  The little angel fish climbed well at first but tired quickly & started to fall behind, moving from being an 'above average' climber, to being an 'average' climber, to being a 'below average' climber.
It didn't matter how hard the little angel fish tried to improve, it just couldn't climb any better &, in the end, the little angel fish refused to try any more.  

The little angel fish was exhausted & felt very stupid.

The problem was, no-one realised the little angel fish wasn't really a squirrel & even though the little angel fish refused to try & climb the tree, everyone told the little angel fish that this is what it must do. 

 "You look like a squirrel."  

"You must be able to climb like a squirrel."  

"Your mum must be a very soft squirrel not to make you climb better than you do."

"We'll have to get the Animal Welfare Officer involved & fine your mum for not making you climb trees if you don't try to climb more often."

"How are you ever going to get on in life if you don't climb trees?"

Days & months passed but nothing worked.  No-one could get the little angel fish to climb like the other squirrels & the little angel fish felt even more stupid.  In the end, some animal rescue centres got involved & told everyone that the little angel fish that looked like a squirrel was actually an angel fish & not a squirrel at all.

The little angel fish was moved from the forest of trees & put into a tank of salt water.  That's better, everyone thought, the little angel fish is in a tank of salt water where it can now swim with other fishes & be judged on it's swimming.

The little angel fish was relieved to be out of the forest & was very keen to start swimming & be judged on how well it swam.  But the water made the little angel fish splutter & splash.  Entering the water & swimming in the water was not as easy as the little angel fish had expected.  It tried & tried but, again, reached a point when it refused to try any more.  The salt water was really yucky & the little angel fish felt stupid all over again.

After a bit of to-ing & fro-ing, a very wise veterinarian assessed the little angel fish, visited the animal trainers who worked with the fish in the tank of salt water & visited some other animal trainers who worked with fish in a fresh water pond.  The very wise veterinarian announced that the little angel fish was a fresh water fish, not a salt water fish, so would only be able to achieve its best swimming if it was moved to a fresh water pond.  

So this is what happened.

The animal trainers who worked with fish in the fresh water pond tested the little angel fish on it's swimming ability in fresh water & discovered the little angel fish had a non-verbal swimming iQ of 135 (that's 5 points off genius swimming).

No-one else had spotted this before 

(except, maybe, the 'soft squirrel mum').

What a clever little angel fish.  

For the first time in a very long time the little angel fish felt proud.

So, it looks like Albert Einstein was right.

And, switching analogies from fauna to flora, so was Alexander den Heijer when he said: 

"When a flower doesn't bloom

you fix the environment in which it grows, 

not the flower."

Alexander den Heijer

Alone by Belhoula Amir via behance.net

Anna Funder Quote

She was 
brave and 
strong and 

broken

all at once.

Alive Alive O ... & Kicking

... and grateful to be so.

This word, alive, crops up a lot in this community.  I saw a tweet recently sharing a blog post by a mum about her daughter & leading with the quote:

"Alive.  She wants to be alive."

It put me in mind of something else I'd read just as recently, much, much closer to home.  A form, filled out at school.  Under "my achievements" was written, in a careful but deliberate hand, 
"living this long".

My reaction was mixed.  

I was so sad but I was also very proud.  

I was sad because living was considered an achievement ~ clearly life is such a battle that to be winning is worth recording ~ and I was sad because this was the only achievement recorded, or acknowledged.  

Then I was proud.  I was proud of the honesty ~ because this feeling had been expressed.  I was also proud because winning this battle ~ staying alive ~ requires incredible bravery, resilience & strength, just to manage the extreme levels of anxiety, sometimes panic, caused by 'being autistic' in a neuro-typical world.

They don't recognise these attributes in themselves necessarily, nor are they visible through their demeanour or behaviour ~ these attributes manifest in such seemingly simple, every day actions like leaving the house, getting into school, staying in their seat at school, moving from classroom to classroom, transitioning into a busy assembly hall, trying to make the right choice when you think someone is laughing at you & so on, & so on, & so on.  Sometimes the bravery, resilience or strength fails.  Then they might withdraw, hide away, run away, scream, cry & even kick out.

But they are alive.

I do sometimes worry that bystanders wonder what the blazes I'm going on about all the time.  Why am I always harping on about autism?  What's the big deal?  It's just a condition, not a terminal illness.  

No-one's going to die.

But the thing is, they could, actually, & they do.

The mental health issues that often arise as a result of being autistic can become so severe that life is threatened, & sometimes lost.

And that's the worry.  I wish I'd seen written under "what I want to achieve" the words "Alive.  I want to be alive."  But just because it wasn't, doesn't make it not so.  And there was something there so, phew!

So, I am very grateful that we are alive.  I & other parents are always very aware that it could be worse.  Many (but not all) of our loved ones are alive &, with the right support, understanding & acceptance, will remain so & will flourish & will find positive ways to utilise their amazing personal skills & experiences.

We know others have it different.

But, like anyone, we will do whatever we can to keep our loved ones safe, to keep them alive.  

Alive ~ & kicking ~ if that's what it takes.

Piccsy.com via Pinterest