Broken minds

I ruminate on this a lot, when I hear things like

"mind over matter”

“where there’s a will there’s a way”

“chin up”

 “be more resilient”

Not about me, specifically, because I think my mental health is in an OK place.  But for autistic people where acceptance, understanding & accommodation are lacking (assuming the autism has even been recognised in the first place), mental health issues can quickly arise.  Then, for them, and anyone suffering with poor mental health, this is what I want to say.

Broken Minds : An Affinity With A

A quote on neurodiversity ...

I've just started reading a Guide on Neurodiversity at Work, published this month by the Chartered Institute of Personnel & Development.  It looks like it will be an enlightening read.  It opens up with a quote from The Atlantic, written by Harvey Blume in 1998.

"Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.  Who can say what form of wiring will be best at any given time."

Given current "unhelpful" coverage on autism in some parts of the media at the moment, I felt compelled to capture it & to share.

Thanks also to The Guardian who are currently actively inviting disabled people to apply to train as journalists.  

The more positive attitudes & approaches out there help me to set aside the less helpful. 

An Affinity with A

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!

Castles and Quiches

I was filled with dread as more of my angel fish transitioned from the safety of their petting zoo to a nearby animal sanctuary last September.

It’s not an aquarium just for angel fish, or even a pond or a lake for all fish.  And it’s not a safari park or zoo.  (I know because I've visited them all!)  But there are squirrels & a myriad of species welcome at this particular animal sanctuary.

I was filled with dread because moving from a petting zoo to an animal sanctuary can be disproportionately unsettling for angel fish.  Changes & surprises are particularly scary & anxiety inducing to angel fish.  And all that moving around from pen to tank, getting to know all those new animal handlers & all those new rules, mixing with the big fish, big squirrels & other big species, learning to be more independent ... well, it's really hard work, keeping it all together AND learning at the same time!

But this particular animal sanctuary is a hidden gem of a place, in my opinion.  Caring & talented animal handlers guide, teach & encourage the angel fish, squirrels & other species lucky enough to be there, in my opinion.

For angel fish, it’s particularly challenging.  Mistakes are made.   But they are helped to move on from these mistakes.  Everyone works together, with genuine concern & interest, to learn from these mistakes ~ to understand the underlying cause & to try to prevent a reoccurrence.  Not all angel fish are so fortunate.  Not all angel fish find themselves in places where their angel fish ways are understood & supported.  When they are, their confidence & self-belief reignites & grows.  

And this has been evidenced by some truly joyous moments recently ~ so much so I could have swum with the salmon & danced with the dolphins!

I cannot describe the relief & sheer joy of hearing one angel fish say "let's list all the things I'm good at" (angel fish can often think they’re pretty “useless” even when presented with evidence to the contrary) ... of witnessing another angel fish deciding to have a go at something new ~ something they didn't have to do but wanted to do (angel fish often avoid trying new things, fearful of failure, of not being good enough, of not being perfect or looking foolish) ... of seeing your angel fish swim home with head held high, proud of what they've made (curtain walled castles & quiches to name but two) ... of hearing your angel fish pronounce “it’s like you always say mum: if you do what you love, you’ll love what you do” (my long standing, non original mantra).  A mantra that is particularly pertinent to angel fish who can often find it difficult to engage.  It’s why it’s so important to help them find things they enjoy & to use those interests to connect, to engage with other "less appealing" but often necessary activities.

So, while I worried that the animal sanctuary might be too much for these angel fish, currently they are actually benefitting from the wider range of activities on offer & from what seems to be a standardised approach to fun, adapted lesson plans, making those activities more accessible (more angel fish friendly &, actually, still friendly & accessible to all species). 

And we are amassing content for their achievement books (started at a time when self-esteem was low to evidence ability, evidence the good days, evidence the “can dos”, evidence their talents).

I know we're not out of the woods yet ... nor would we want to be as, one day, these little angel fish will be big angel fish & they will need to know how to survive in the wild, wild woods ... in the great lakes, the deep blue seas & the rolling plains.

But I'm feeling hopeful.  

And I'm feeling thankful that these angel fish attend an animal sanctuary that seems to be a good fit for them ... & for me.

Curtain Walled Castle by An Affinity with A

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

  

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