Autism does not equal bad behaviour

I was having another one of those conversations with myself (on this occasion in my head, rather than out loud).  I think it started with me pondering the surprise some people show on hearing of my, or others', autism diagnosis.  
It ended up with me needing to get this down.
(For important caveat, see end of post!)

I think the surprise comes when the person said to be autistic doesn't fit the autistic stereotype.  

But what's driving the stereotype?  
It made me think that, to the unknowing eye, autism is often only visible (to the point of being discussed) when behaviours arising from autism 
disrupt other people's day to day. 

In other words, many people's first known experience of autism is likely to be as an explanation for disruptive, adverse or bad behaviour (because that's what draws their attention to the person & then the condition).

Ergo, autism must equal bad behaviour.  
And if you're not bad, you can't be autistic.

But autism does not equal bad behaviour.
Nowhere in the diagnostic criteria for autism is a requisite feature "bad behaviour".  And, to my knowledge, no-one has been refused a diagnosis due to a lack of "bad behaviour"!

Rather, across a range of diagnostic manuals, it is widely recognised that a diagnosis of an autism spectrum disorder (or ASD) is reliant on a demonstration of persistent difficulties with:

~ Reciprocal social interactions,

~ Social communication & of a

~ Restrictive, repetitive repertoire of behaviours, interests &              activities (including sensory issues & behaviours)

This triad of "impairments", or differences, combine to explain a range of "different" behaviours that may actually go unnoticed, are less disruptive (if at all) or are simply dismissed as being part of someone’s character ~ like them or not.  In fact, desperate to please, to blend in & prone to needing rules ~ and to follow them ~ some autistic people may be the quietest & best behaved people in the room! 

So it's important to understand that the behaviours autistic people exhibit (whatever they may be) are merely the outward manifestation of their condition; of coping (or not) with the difficulties they're having with social interactions, social communication, an inability to engage in their repetitive interest or as a result of sensory issues.

And what happens whey they can cope no longer?

Some may withdraw, not speak, freeze with fear.  
People may think they're overly shy or nervous, maybe.

Others may run away, or flee with fear.
People may think they're weak or spoilt or lacking resilience, maybe.

And others may lash out, or fight with fear.
People may think they're naughty & badly parented, maybe.

Which scenario is most likely to generate enquiry, discussion, a discovery that person is autistic?  
And so the stereotype is further fuelled.

However, all 3 behaviours are a sign that they're in crisis, scared, overwhelmed, in need of help.  They're not seeking attention or wilfully being mean or difficult.

"Bad" behaviour is not acceptable, that's true.  But to address any "limiting" behaviour appropriately requires an understanding of the cause.  And when we say, this is happening because of the autism, we are not using autism as an excuse but as an explanation.  Autism describes the condition that may lead to standout or limiting behaviours, sometimes "bad", often not.

And whether autism is contributing to the behaviour equation, or not, I would urge everyone to always think about what lies behind, or beneath, the behaviour of others.  

They just may need your help.

Me?  I was (am) a "good girl" ... but that's another story!

Image from Nathan Michael on Instagram via Tumblr & Pinterest

Finally, a caveat (or get out clause): I may well have interpreted the surprise of others completely wrongly ~ interpreting hidden meanings & facial expressions is part of that whole "social interaction" and "social communication" conundrum us #AlsoAutistic people struggle with ... but I do think my thinking remains valid ... and I do know that sometimes, being super sensitive & observant, I can also be surprisingly astute!

Actually Also Autistic

So, here goes.  I am no longer an autism amateur.  Instead, it seems, I have much more of an affinity with autism than I first thought.  So much so, in fact, that I might even venture to claim I’m a bit of an autism expert, actually!

Because I’m actually also autistic.*

So diagnosed the clinical psychologist I spent several hours talking with one sunny day last September.

It’s one reason I’ve been a bit quiet here.  Not because I’m bothered by the diagnosis, or unsure of speaking about it; just because, this being the case, I want to write any future posts with the open acknowledgement that I really am speaking from a position of authority ~ at times from personal experience ~ rather than simply as a relative & observer of others.  And to mark the transition from observer to participant, I felt I needed to write this post first &, for that, I wanted to be in receipt of my final, physical diagnosis report which arrived in December.

A bit of an early Christmas present to myself, actually, as with diagnosis came insight, understanding & acceptance.  Not that it was a surprise to me.  The more I'd been learning about autism the more I was recognising myself & the more true my acknowledged “affinity with a” became!

Why bother with a diagnosis & why share?

Well, if I'm to continue advocating for a better understanding, acceptance & accommodation of autism, I'd much prefer to do so from a place of truth, based on fact, with clear authority.

Also, the personal benefits of diagnosis are huge & I share these in case anyone I know is asking as well as for the benefit of anyone else considering any kind of assessment of their own.

First, in short, for me, it explains everything!

In some ways I wish I'd known long before now.  It could have saved much pain & heartache ~ forewarned would have been forearmed, for sure!  But dwelling in the past is only helpful if it can make a positive difference to the future.

Herein lies a second, unexpected benefit: I can forgive myself for situations I now see arose from me operating differently.  I'm not to blame ~ I simply wasn't programmed to see the risk, interpret or assess the situation accurately.  I can stop beating myself up, use this new perspective to prepare my children & move on.

Third, I can plan for a more appropriate future, fully informed about how I operate, what I need ... & what I don’t need ... my weaknesses & my strengths.

Last, the biggest win is being able to empathise with angel fish.  Their realisation that I really do “get them”  generated a range of positive responses, from coy smiles to cheers & huge hugs.

But how come it hasn't been a problem for me?  Well, for one, times have changed rather a lot since I was their age.  And, actually, it has been a problem.  There have been lots of problems but they just weren't necessarily visible or obvious.  My diagnosis report states:

"... core difficulties ... not easily observed from the outside due to her incredible ability to mask .... She has worked extremely hard over the years to master skills & to learn & apply rules to enable her to survive the social world & to function as effectively as she does.  She is intellectually competent, verbally articulate, has perfectionistic tendencies & has strengths in noticing detail, all of which have helped her enormously in learning to mask successfully by developing compensatory strategies.  ... testament to her incredible resilience & resourcefulness."

Therein lie some talents!  I am happy with my diagnosis.  I am happy to be me.  I AM autistic.  Autism is my super power (I will credit whoever said this first when I find out who it was!) & I intend to use it!  I've shown myself to be a great observer & strategist & have super strong senses!

I've a lot, LOT more I could say on the subject but I'll wrap up for now!  I'm still experiencing many lightbulb moments about past events, conversations, experiences that I now see differently & "get", or at least wonder about.  If I've made you wonder about anything, please feel free to ask ~ I'd be more than happy to share my thoughts.

Meanwhile ... and please know this is said with kindness & comes from a place of self-preservation rather than challenge ... how you respond to this post says more about you than it does about me! (Another credit owing here.)

Finally, despite the challenges the current world presents, I can honestly say I'm so very proud of our autism rich family.

Selfie

 * I've chosen my words carefully as #ActuallyAutistic is a phrase used by many autistic commentators to join together.  I've previously interpreted #ActuallyAutistic as a bit challenging & a bit excluding of non-autistic commentators ... a bit "what gives you the right to speak on our behalf when we actually know what it's like to be autistic"?  But while writing this article, I realise the world "actually" is defined as both a "statement of truth" & as a "statement of surprise" (& I've used both in this post).  So now I don't know which was intended by the #ActuallyAutistic tag.  But, in pursuit of clarity, I think I'll make a stand for using #AlsoAutistic as a more inclusive, non-excluding term.  Because I believe there are many valid voices (autistic & non) that can come together to create volume & create change quicker.  

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

  

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."

Arriving in Holland

... & happy to be here.

Autism arriving in the family is like arriving in Holland when you'd actually expected to tip up in Italy.

"Welcome to Holland" was written by Emily Perl Kingsley, in her words "to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel."

I came across this early in our journey & it's sentiment resonated strongly with me so I'm sharing it now."

A point of note though ~ with autism & other 'hidden' developmental conditions, there is no announcement from the stewardess before you disembark the 'plane so you continue on your journey still thinking you've arrived in Italy, trying to implement the plans you've made for Italy & to speak Italian, until someone, somewhere, years down the line, finally recognises your struggle & explains that you're not actually in Italy ~ you've been in Holland all along! 

And, for the record, I feel blessed to have arrived in Holland.  It's not as easy or relaxing a trip as I'd planned (someone always has to keep a finger in the dyke) ~ but having settled, & as I continue to explore, I've found it to be a fascinating destination.

Welcome to Holland 

by Emily Perl Kingsley circa 1987

When you're going to have a baby, it's like planning a fabulous vacation trip ~ to Italy.  You buy a bunch of guidebooks & make your wonderful plans.  The Coliseum, the Michelangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags & off you go.  Several hours later, the 'plane lands.

The stewardess comes in & says, 
"Welcome to Holland".

"Holland?!" you say.  "What do you mean, Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  You've landed in Holland & there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine & disease.  It's just a different place.

So you must go out & buy a new guidebook.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while & you catch your breath, you look around, & you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming & going from Italy, & they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, 
"Yes, that's where I was supposed to go.  That's what I had planned."

The pain of that will never, ever go away because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

End.

via Pinterest (original source unknown)