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

Conversations

And now a C word!

Conversations.

Actually, A conversation.

That's all it takes ~ just one conversation.

A conversation can save someone's life.

It's time to change attitudes towards mental health issues.

Start a conversation or be ready to listen to someone who does.

Today is time to talk day. 

Watch the video & find out more.  

"You don't have to be an expert. You only have to listen and be supportive." Our Young Champions share why it's #TimetoTalk pic.twitter.com/YwWRkIKzxs

— Time to Change (@TimetoChange) February 1, 2017

Books

So this is a B I do like.  I really do like books.  I wish I had a library (or multiple book shelves altogether somewhere) where all our books could be respectfully displayed & ordered, easily perused & picked up.  Space for the books we own already & the books yet to be acquired.  

Actually, I remember creating a library in my bedroom as a child.  Every book was categorised, each had a hand-drawn 'loan' stamp in the front, each had a location code taped to the spine & each shelf in the glass fronted cabinet was labelled.  I think I could lay my hands on one or two of those books right now. 

Like many, I love the feel & smell of a book ~ some I could literally stroke (momentarily) or bury my nose into, they feel & smell so good!  

So, given my love of books, of aesthetics, of the need to understand all things autism, it won't be a surprise to learn that our book collection is growing at a rapid rate.  With some books I simply enjoy looking at the pictures ~ these are the books that satisfy my love of aesthetics.  I'm in famous company.  Andy Warhol is quoted as saying:"

I never read, I just look at pictures."

With others I absorb the words ~ within this category are many of the books on autism & in these are numerous underlinings & notes in the margins.  At some point I'll revisit these & share highlights & musings here.  Going forward, as I finish a book, I will aim to post a review, as a memory jogger for me & in the hope it might be useful to passers by.

 For now, I have a stack of books waiting for their first page turn, waiting to be discovered & enjoyed.  These are a mix of fiction & aesthetics.  These are the ones where I want to carve out time to sit & enjoy without risk of interruption   And I have at least 3 books that are part read, 1 fictional, 2 factual ~ about autism (of course!).

The one I want to finish most urgently (& which was started most recently) was recommended to me by our CAMHS Consultant.  There's already much underlining ~ & I suspect my pencil work is as unfinished as the book ~ but I would already recommend it to anyone wanting to understand more about Pathological Demand Avoidance, or PDA.  It is:

Understanding Pathological Demand Avoidance Syndrome in Children / A Guide for Parents, Teachers & other Professionals

by Phil Christie, Margaret Duncan, Ruth Fidler & Zara Healy 
via Jessica Kingsley Publishers

I am reluctantly including an image (& link to the publisher ~ other retailers available) but doing so jars horrendously with my desire for appealing aesthetics, for which I can only apologise!

via Pinterest (original source unknown)

What is Autism?

I delayed addressing this question when I first started this blog.  Really, I avoided it because Autism is a complex condition ~ I wanted to do it justice but I wanted to keep it simple & meaningful for passers by.  

I'm also aware that my experience of being autistic is "limited" to our lived experiences (collectively 98 years & counting, so not insignificant updated 2019) & my own fairly extensive research (I am autistic after all & Autism has become a "special interest") but I cannot profess to possess first hand experience across the spectrum (or constellation ~ more below), or speak for those who do.

Although I can speak up & speak out for them & I will where I feel qualified to do so.  It's one reason I leak thoughts here & into other social channels (over & above the personally therapeutic benefit derived).

 But back to the question: if I was ever to "go public" with An Affinity with A then I had to at least attempt to provide some sort of answer to the question "what is Autism?" for any visitors who might rightly ask.

And I wanted to capture what worked for me when I was faced with having to understand a then totally alien concept ~ a situation that was affecting us hugely & very urgently needed to be understood if we were ever regain control & move forward.

I'll admit now that my answer (when I get to it) is short & sweet.  In the end, I'm simply attempting to direct a mindset & prepare the ground for a general understanding of Autism while signposting those keen to know more to resources that already very expertly explain & accurately articulate what Autism is (acknowledging also that there are still many myths to bust & much, much more to discover, learn & understand ~ especially from the autistic community themselves who have historically been hugely under-represented in academic research).

As an aside, for an Autism friendly academic perspective I'd highly recommend "Autism: A New Introduction to Psychological theory & Current Debate" by Sue Fletcher-Watson & Francesca Happe (referenced again below).

One more thing before we get there, formal diagnostic guidelines in the UK aside, all of the following are terms used to describe Autism (& there are as many differences of opinion about their validity as there are terms used): 

Autism Spectrum Disorder, or ASD
Autism Spectrum Condition, or ASC

High Functioning Autism, or HFA
Low Functioning Autism, or LFA
Severe Autism
Mild Autism
Asperger Syndrome, or AS

Pathological Demand Avoidance, or PDA

& others! 

In our family, the formal diagnoses are all of Autism Sepctrum Disorder, described (verbally) as being "high functioning" on the basis that those affected all have IQ levels that sit in the "average to high" bracket.  There are no additional learning disabilities in our case, although there are other co-morbid conditions & PDA.  And herein lie our lived experiences of Autism.

We may well have been diagnosed Aspergers but the only term officially allowed in the UK at the time was (is) ASD.  I'm OK with "being autistic" (less OK with "disorder") because I believe, whichever of the above terms is diagnosed or adopted, we autistics do all share the same core areas of difference, irrespective of how they may manifest in individuals.

Before delving deep into diagnostic criteria, like many other commentators before me (& I hope after me), I'd respectfully recommend adopting the following mindset, advocated by Temple Grandin & Ellen Notbohm respectively:

 "Autism is not a disability, 
it's a different ability."

or, put another way, 

"Autism is not a processing error, it's a different operating system."

And to understand conceptually what Autism is, then this additional Ellen Notbohm quote, taken from her book "Ten Things Your Student with Autism Wishes You Knew", provides the perfect analogy:

"A person with Autism is like a Mac in a PC world.  They're hard-wired differently.  
Not incorrectly ~ just differently."

I hope I'll be forgiven, though, for amending Ellen Notbohm's statement very slightly ~ she actually references "the child with autism", advocating the need to "teach in a manner meaningful to him".  This is absolutely correct but for the purposes of using the statement to explain what Autism means to me, I wanted to make it relevant to all.  After all, Autism is a life-long, hard-wired neurological developmental difference.  

Even so, I think it's an extremely positive ~ & pretty cool way ~ of introducing the concept of Autism to autistic kids to help them understand what it means to be autistic without doing them down. 

And the analogy can so easily be expanded upon.  There are many more PCs than there are Macs.  Macs are less well understood.  Actually, they do very similar things, but not always in the same way.  And they sometimes need different inputs to complete the same tasks.  They each have their strengths & weaknesses.  The skill is in recognising and extracting the strengths from each & in selecting the best system for the job in hand.  For example, Macs are pretty innovative & are capable of doing creative stuff really well (of course, that doesn't mean PCs aren't :). 

It works for me!

Another regularly recurring quote across the autism community provides an important care point for anyone wanting to understand Autism better, courtesy of Dr Stephen Shore:

"If you've met one person with autism, you've met one person with autism."

In short, everyone who is autistic is affected differently by it.  If you know one autistic individual, you cannot claim to know how the condition will manifest itself in another.  Yes, there are common areas of difference, but how those differences manifest themselves can vary hugely, hence the reference to 'spectrum'.  And I can attest to this first hand with my own autistic family members!

So, now it's important to understand the meaning of 'spectrum' in relation to Autism.  To think of it, not as a linear thing (ie with autistic people being more or less autistic from 'severely' to 'not very' autistic) but as something much more dynamic.  For many, this has been illustrated very usefully by Rebecca Burgess & available with further explanation via her blog 
(click on the image):  

Even more recently I've been introduced to the concept of the Autism Constellation inspired by Caroline Hearst (aka AutAngel) & described by Sue Fletcher-Watson & Francesca Happe in their book 
"Autism: A New Introduction to Psychological Theory & Current Debate" (published by Routledge 2019) 

This constellation concept most accurately illustrates a belief I've formed over my own years of immersion into all things Autism, that even though many of us may not be considered "severely autistic" we do suffer severely because we are autistic.  And I (& others) have come to the considered opinion that being autistic is a condition, or state, of human being that requires more enabling societies to make it a less disabling condition than it currently is ... in the Western world at least!  Maybe somewhere in the world there are societies ~  cultures ~ that are more conducive to the autistic state of being?  If so, the rest of the world should be looking to learn from them.

So, by way of introduction, that's it!  Almost ...

For a more poetic spin around all things Autism from me, you might like to read this post (don't let the title mislead):
S is for ...

S is for Simples!!

Maybe not.  It's far more complex & challenging than these insights & ramblings might suggest.  I'm constantly adding to my learning & understanding.  To that end, some go to sites for help & information include the following:

The National Autistic Society

the leading UK charity for people with Autism (including those with Asperger Syndrome) & their families (look up local branches too in some counties)

The PDA Society

for information about Pathological Demand Avoidance Syndrome including strategies for accessing & engaging with education

Temple Grandin
Professor of Animal Science, Colorado State University, autistic, author & public speaker on autism & animal welfare

Tony Attwood
Clinical Psychologist, Associate Professor, Griffiths University in Queensland, author & public speaker on autism

Steve Silberman
Author of "Neurotribes : The legacy of Autism and how to think smarter about people who think differently"

Understood.org
for practical advice, resources & support for learning & attention issues including executive functioning & attention deficit

This post has been about what Autism is ... or the mindset I'm advocating before exploring in detail what Autism is.

One thing Autism is NOT is "bad behaviour".
Standout, or disruptive, or "different to the average" behaviour might very well occur as a result of autistic attributes not being supported or accommodated ... but it is not part of the diagnostic criteria. 

Leaving the last word to an autistic 'A' list celebrity, Temple Grandin, remember always, we are all:

"Different, not less."

Ableism

I thought I'd made up the word Albeism.  I was watching something a while back, where disabled people were, again, fighting for equal rights & I wondered why there wasn't a word to describe discrimination on the grounds of ability, like there is for discrimination on the grounds of sex, race & age, for example.  I wondered why the word Ableism didn't exist & wasn't in everyday use.  Sexism, racism, ageism are ~ sadly ~ in everyday use.  Yet, as far as I was aware, there was no equivalent reference for discrimination against disability. 

I wondered if this was because society was generally more accepting of the notion that discrimination on grounds of sex, race or age is unjust; that society was, somehow, more accepting of discrimination on the grounds of a disability being justifiable because, after all, being disabled means 'you can't'. 

I was all set to challenge this hypothesis & demand the introduction of the word, a word, to put the fight against discrimination on the grounds of ability on a level with other forms of prejudice when I thought I should just check to see if the word already exists.  And it does. 

Ableism ~ unsurprisingly ~ is discrimination in favour of able-bodied people.

So, good news, it does exist.  But, still, despite the increasing profile of disability issues, the word is not commonly used.  In response to anyone who might dare to suggest that this means it's not such a serious or pressing issue as other "~isms", I'd venture the opposite is more likely to be true and it's lack of use supports even more my belief that Ableism is too often accepted as being warranted or justified.

And isn't the wording of the definition interesting: discrimination in favour of able-bodied which contrasts to the definitions of other prejudices which reference discrimination on the grounds of age, sex or race.  To be comparable, shouldn't the definition of Ableism be "discrimination on the grounds of ability".  Surely this is more meaningful & more inclusive?

I think the under use of the word, together with it's atypical definition, almost serves to justify this type of discrimination because of a belief that having a disability means 'you can't'.  Whereas if you talk about different abilities, then this means 'you can', just differently, & with that thinking society is forced then to accommodate those different abilities.  That's how autism is often referred to ~ as a different ability.  And I don't see why any disability (or ability) shouldn't be described as such ~ in the pursuit of ability equality.

Well, 'disabled' people can, as was powerfully communicated by the Rio Paralympics 2016 advertising campaign.  This belief & ambition should exist for all people of all abilities in all areas of life & society should aim to recognise & accommodate.

Advent & Christmas & All is Not Calm

So today is the 1st of December.  
Advent & the countdown to Christmas Day has begun.

Everyone is jollier, everything is sparklier, everything is different ~ & therein lies the challenge.

One child is unable to make school.  

One refused to even look at the trees strewn with lights last night, claiming no interest in Christmas until December.  Actually, an impressively mature coping strategy from such a junior person.

Christmas will mean different things to different people, a time to kick back & relax a little more, reflect on what we're most grateful for, a time to make more time for family & friends, to socialise, party & gather together, to indulge a little more, a time to be a little kinder maybe, or to share good fortune with the less fortunate.

However Christmas manifests itself for you, & whether you love it or loathe it, it inevitably involves change - change in routines, change in our surroundings, change in what we eat & drink & how we dress even, change in the way people behave.

And if you're autistic, change is not good, however sparkly it is, however beautifully wrapped & presented.  Change is hugely challenging & anxiety inducing.  Routine & familiarity is safe.  It provides grounding, a sense of wellbeing in a world that is difficult enough to work out at the best of times.  Change is the removal of safe.  Change is dangerous.  Dangerous situations cause fight or flight responses.  Christmas brings many changes each day, every day, in every way.  So Christmas inevitably generates adverse behaviours brought about by the need to fight or flee.

So what do we do?

Well, if we were to follow the advice of our CAMHS Consultant, we'd have no visitors.  We'd try & keep things as normal as possible, with as little change as possible, no socialising, no drama over Christmas dinner - it's just another meal & if it's to be eaten on a tray in a bedroom then so be it.

I'm OK with that.  But what about everyone & everything else?

There are many articles giving good advice to survive the Christmas period.  I'll add some links below.  I certainly don't have all the answers but I know we will try & keep things as normal as possible while indulging the children (& ourselves) as far as we dare in the magic of Christmas, being ready to deal with the inevitable sensory overloads, the panic attacks & what seems like everyone's need to 'take control' (disastrous when this occurs concurrently).

My advice, or my mantra, in a (mixed) nutshell: 

* * Sparkles with Strategies * * 

Wishing you a calm Christmas time.

Photo by Stellie Chavez on Flickr

Top tips for a calmer Christmas from the National Autistic Society.

This article on Autism & Thanksgiving is relevant also.  I'm not a fan of the source BUT the content of this article is sound, in my opinion ~ it flags potential issues & suggests how to avoid.

An article via The Mighty by Catherine Contillo who describes her 
3 biggest challenges of the holiday season as someone with autism.


 17 Tips to make Thanksgiving more comfortable for kids, from The Mighty again.
Personally, we do No. 6 every time which also makes most of the others easy to implement!

Finally, in the words of Benjamin Franklin:

"By failing to prepare, you are preparing to fail."