“Having a Meltdown in my Head”

exploding head There are times when I have a meltdown in my head.  It’s hard to describe the feeling, I kind of internalise the meltdown and run it like a film in my head.  Of what I truly need to do – but can’t.  A film, running with me screaming my head off, ranting out all the words I want to yell at the situation or person.  Imagining it like an alternate universe scenario.

I am having one right now.  Wow, how can I type up a blog post and meltdown at the same time, you might wonder.  I wish I knew.  It’s a horrible feeling.  Containing this humungous explosion that really, really needs to come out.  I always was the passive autistic sub-type.  The internalising type.  There is some shit in life however, that makes it so hard to remain passive.

Like when the system is so obstructive, so resistant, so customer unfriendly and unhelpful, that just keeping an autistic child managing, just coping, becomes impossible.  There is no autism awareness.  There is no putting the wellbeing of special needs children first, no caring that the family are the ones suffering as a result.  Never mind supporting autistic parents by simply making reasonable adjustments and doing what they can to help a situation.

Inside my head, I’m crying.  I’m raging big-time.  There are a fair few ‘F words’ flying.  The average special needs parent will feel such frustration on a regular basis of course.  Imagine being autistic though and restraining a meltdown in that situation.  A meltdown is a loss of control.  Imagine masking that.  Because you know that if you allow it out, those very professionals who are obstructing and resisting complying with the law; being flexible and actually doing their job properly, would use it against you in a heartbeat.  You would be labelled as mentally unstable and aggressive, the consequences of that could of course be huge.    As a parent, my own needs and difficulties must be suppressed.

So I fight it.  I fight it with everything I have.  I try to ride this feeling of compulsion, like someone with Tourettes trying to restrain their tics.  Like a mega “premonitory urge” before the tic comes.  Imagine sitting on that.  I feel like I want to burst.  Something’s gotta give of course, so in the end, of course I will just cry.  Cry at the injustice of it all.  Cry that so-called “professionals” can be so cruel without a second thought.  Cry that I’m forced into fighting the system when it’s the last thing I want or need.  Cry that as an autistic, I can’t be myself, I have to pretend the whole time.  I have to force myself into being a robot for the sake of society and ‘the system’ and what it deems ‘acceptable’.  I’m living a lie.  But I don’t have a choice.

This mask has become so heavy, it’s almost crushing me.

heavy mask

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“The A Word” Has Missed a Trick

angry girl 2Letter Aangry girl

“The A Word”…autism, Asperger’s…awareness…angry!

The BBC has done something great, something admirable, it has put on prime-time TV, a much-lauded drama about a family with an autistic child.  Amidst the unfolding plot of an uncle’s recent torrid affair and a grandad being pursued by his tutor for…a torrid affair, lies a family discovering their son is different.  He stands out from his peers because of his quirks, he wanders (apparently miles away, through rolling terrain without his family having been aware he has even vanished from the house until he is collected by friends in a van each time) and he loves listening to music and singing along.

Yay, cry the autism community, it’s great for getting more awareness out there in the public domain.  But hold the front page…hasn’t it missed a trick?  Wasn’t this a golden opportunity to really address some of the most pressing issues in the autism community?  Did it go anywhere near enough?  For several reasons I don’t believe it did.  One is the superfluous and irrelevant sex scenes (why does a drama getting a message across about autism need those!) that totally distracted from the important messages being broadcast, another is the unrealistic autism diagnosis from a single professional when children are diagnosed by a multi-disciplinary team in reality (and how amazingly quickly it happened), then there is the lack of representations of the special needs related struggles families go through before they get to diagnosis and after and still further, is the basis of the programme’s title – the mother’s avoidance of assessment and refusal to accept that her son had autism, to the point she didn’t even want the word uttered.  Most families are desperate for a diagnosis so their child can access support!

But even more than those things, the one that has riled me the most by far, is the completely missed opportunity to get the message out there about autistic females.  Yes, girls have autism too!  The biggest single problem about diagnosis, is the masses of females not being assessed or diagnosed because of the male-researched autism diagnostic criteria.  This has caused totally skewed statistics to be recorded that at best, the gender ratio is 4:1 – that is males to females.  Females are so often misdiagnosed and far less referred for assessment in the first place.  I firmly believe the gender ratio is equal.  The renowned Tony Attwood has gone on record saying the same.

So, wasn’t this a chance to start setting the record straight and addressing the issue of all the undiagnosed autistic females out there?  Struggling in school with labels such as shy, geeky, awkward, tag-along, emotional, anxious, bullied or a loner?  That girls (to our detriment) mask and mimic, makes girls more challenging to diagnose – but that’s because of those damned diagnostic criteria!  Highlighting this problem may have contributed to pressure to update the criteria!

There is information out there about autistic female presentation, the clinical world is in the infancy of awareness and it’s a painfully slow process.  So having a drama with an autistic daughter as the focus would have been a marvellous opportunity, to highlight the superficially more subtle (but no less affected) presentation of an autistic girl, show the challenges the girl faced in school with problems such as bullying and social awkwardness but trying desperately to fit in with friends.  Instead, they showed a stereotypical little boy, who avoided his peers, obsessed over music and rote citations about which band’s song it was from which year and wandered for miles.  All this has done is maintained stereotypes about autism.  There are in fact some males who have the ‘female’ presentation type of autism too by the way.  So how useful is a programme that has continued to stereotype, for public awareness?  What favour has it really done the autism community?

Doesn’t the public already think something’s up with a child who externalises their autism as many males do?  Aren’t they already wondering from that behaviour if the child is autistic?  What about the internalising autistic girl, panicking inside, self-harming alone at home, being misdiagnosed as having a ‘generalised anxiety disorder’ or one of the other oft-dished-out labels they receive? Or the autistic girl labelled as an over-sensitive and over-emotional neurotypical?  Isn’t it about time public awareness was about actual awareness?  Wouldn’t it help some parents with a dawning realisation that their struggling daughter was autistic if they saw this scenario played out on TV?

In all honesty, I only watched the first 2 episodes of “The A Word” I found the carry-on’s around the family too distracting and it wasn’t realistic enough to keep me watching, holding my breath saying “Yes – yes that’s it!” in recognition.

TV Dramas are a clever way of appealing to the masses on a subject matter about which they might not otherwise be interested.  Until it happens to them.  So, BBC, as far as I am concerned you missed a trick big time here and is there any going forward now?  Will the public be interested in another autism drama, I suspect not, the novelty factor has been played out already.

However, ITV, Channels 4 and 5 et al, if you are reading, maybe you can do a better job and will give more thought to the power you hold in your hands to get out the best message you can with the medium you have.  I will watch that space with interest to see if any bandwagon efforts in the right direction appear – so it’s over to you.

Edited to add on 28.5.16 this screenshot of a psychologist talking about yet more negatives of “The A Word” (and which hints at the parent blame culture causing so many autism families trauma):

The A Word comment by psychologist