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.