“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

Advertisements

Ehlers-Danlos syndrome and autism

Cortical Chauvinism

This is one in a series of blogs where I discuss different conditions manifesting autstic symptomatology of known origin or neuropathology (so-called syndromic autism). The first of these blogs was on tuberous sclerosis (http://bit.ly/17ExHYt ). The emphasis in all of these blogs is in the commonality of abnormalities in certain parts of the brain.  It is my belief that in autism there is a common lesion that interferes in some way with the division of germinal cells early during brain development. The end result is abnormalities in cell migration and malformed areas of the cerebral cortex and brainstem. You can find additional information about this process at:  http://bit.ly/1aM5KFu and http://bit.ly/136db0t In this blog I discuss the Ehlers-Danlos syndrome and some commonalities to idiopathic autism primarily in terms of brain pathology.

The Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect the connective tissues of the body. As the name…

View original post 809 more words

Connective Tissue Disorders & Their Correlation to Autism

plasticine man It seems for years that I have had problems with tiredness, from the age of seventeen came the bad lower back pain followed later by the aching knees and variety of other bodily pains.  You can live day-to-day with aches and pains that drag you down, but aren’t yet entirely debilitating enough to seek medical help for, you kind of think everyone probably has this issue.  Of course I did intermittently go to the GP with inexplicable tiredness and exhaustion over the years, sometimes blood tests were done, but they always came back with nothing of concern.  It wasn’t until very recently I found out about a connective tissue disorder known as Ehlers Danlos Syndrome and began researching, that it all started to add up.  I realised I had a huge host of the symptoms, one of which is many problems with the gastro-intestinal tract.

I knew that people with autism often have GI problems, scientists also know it, but no-one has been joining up the dots. Medicine and science often seem to identify symptoms and identify and treat them standalone, which of course never gets to the root of the problem, never finds out what is causing the symptoms, or doesn’t do so in a systemic way and match up seemingly disparate symptoms.  Two days ago, after being yet again entirely failed by the NHS (rheumatology department failing to diagnose me, not to mention the arrogant GP who was dismissive and highly reluctant to refer me in the first place and ensured the rheumatologist treated me with the level of disrespect and dismissiveness many of us have become accustomed to with the NHS), I was privately diagnosed with Ehlers Danlos Syndrome.  Before I received my diagnosis, I had researched the seemingly anecdotal connection between EDS and ASC.  ‘There must be some research out there’, I thought.  My youngest child was already diagnosed as hypermobile by our local OT and I can see clear signs of it in my oldest child, they are both on the autistic spectrum too, both conditions are genetic, so there had to be a connection. Sure enough, although the research seems to be still in its infancy, I found it:

1) “High-functioning autistic disorder with Ehlers-Danlos syndromehttp://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full

2) “Autism and Ehlers Danlos Syndrome” http://www.pubfacts.com/detail/1537777/Autism-and-Ehlers-Danlos-syndrome (download full paper from that link)

Here is another article on the effect of EDS on the brain (which also refers to autism, along with proprioception issues and sensory difficulties):
3) “Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Here is an article which discusses the “Underdiagnosed” condition of EDS :
4) (see 5.5 Psychiatric Features) “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
I have read a lot of anecdotal evidence about families with ASC and EDS – isn’t it time science and medicine properly joined up the dots?  I mean even in the article above (3), they state “Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 so they aren’t actually making a strong enough link, they seem to think the two conditions share the same brain changes but not that they are intertwined in some way and that perhaps EDS is even causative of ASC.  So basically there is an elephant in the room…joining the dots elephant…and no-one is bothering to properly join the dots.

It’s high time that science caught up, if we understand connective tissue disorders we may get to understand autism better and perhaps, genes in common can be identified which could lead to understanding causation. Thought for the day:

“For every effect there is a root cause.  Find and address the root cause rather than try to fix the effect, as there is no end to the latter.”

~ Celestine Chua

Edited 28.5.16 to add:

Two genes which may connect the two conditions are ADAMTS2 and TNXB.  Seen on Pinterest –

Pinterest EDS and ASD genes