“When Aspies Attack!”

assumeThis post is partially written with tongue-firmly-in-cheek, because what comes next, despite the emotions and wrath conjured up in the blogger in question, I have found a combination of bemusing, ironic and humorous.  There are times you simply have to laugh things off.  Most often that is easy do, when you know that what is claimed by the other person has no basis in truth, it makes it simply not matter.  Especially when it’s forgettable.  And even when very wrong, I still respect someone’s right to their own opinion.

I don’t mean any of that in disrespect to said blogger, because I truly meant what I said in the comment I wrote which generated such indignance and wrath in her, that I mean her no ill-will.  (That still applies, despite her name-calling and entire misrepresentation of myself.)  That said, I term this post a ‘right of reply’ but one which is a secondary consideration to raising this issue as something happening out there in the blogosphere, which warrants discussion as a blog post in itself.  I guess that issue is the perils of the online world of autistics.

So, this (then) self-diagnosed blogger had written a post about self-diagnosis of Asperger’s, in which she criticised a certain ‘type’ of self-diagnosed individual whilst extolling the validity of her own self-diagnosis.  This claimed validity was mostly based on the fact that she believed she had researched well and was a qualified doctor, as if that automatically gave her prize claim to being correct.  (It transpires that she is a ‘primary care’ doctor and not a psychiatrist, psychologist or even apparently a doctor in an autism-related field).

My reply to her post on this topic, is screenshotted in prime place in her post to which this post is about (significantly, even above screenshotted Tweets from someone calling her names and making nasty, hateful comments which she also included in her post as if we had committed the same ‘offence’, which makes me think that my comment must have really touched a nerve), a post she devoted to accusing me of “trolling” her and sending her “hate mail”.  Can someone not be honest in the appropriate forum without being called a troll?

There are apparently online storms about self-diagnosis, I don’t socialise on Twitter or engage in that way online with the remainder of the autism community (I don’t have the time!), so I’m not involved in those, I just become vaguely aware on the periphery on rare occasions.  A respected researcher Dr Luke Beardon has written his own blog post here about the self-diagnosis debacle, if you want to read more about what’s going on however.  I only touch on this here, as the basis of what’s behind the topic of this blog post, rather than get side-tracked by discussing that whole subject.

Here then is my full comment in reply to this blogger (because she may moderate my comment out): http://media.wix.com/ugd/58c8f1_34e5db251c174416896eab706a42b5c7.pdf

Hell hath no fury like an Aspie that believes they have been scorned!  Sometimes you will hear autistics say “If only the world was full of just autistics!” but clearly, when you have people who struggle understanding the motivation of others, have impaired empathy in some areas and may be hypersensitive to perceived criticism (which can sometimes be from a lifetime of struggling to fit in with NTs) it will never be plain sailing.  Just add in the general potential to read the written word differently from how it was intended and it can be a veritable recipe for disaster.  Clearly this blogger felt very scorned.

I personally think a world full of autistics would be very problematic, rigid people, people who struggle socially, who can misunderstand (and clearly misrepresent sometimes too 😏!) wouldn’t work out too well.  Was I too blunt in the comment which offended this person?  Possibly, but true Aspie qualities of intense need for justice (don’t like hypocrisy) and honesty, can lead by the nose at times.  I won’t deny my own empathy has areas of impairment.  Blogging is commenting on life matters, it’s up to people what they blog about, just don’t forget you are online!  And disable your comments function already if you don’t want to listen to the opinions of others!  Otherwise you may as well just keep a personal diary!

So there it is – and the moral of this post?  Don’t automatically perceive someone’s comment as malicious or label it trolling if you are offended by it, that doesn’t mean it was written with malice intended.  Look at the logic of the content and keep emotions out of it before you respond.  Aspies usually tend to work logically.  Aspies have traits which can be used for good or bad (and anything in between) as written about here.  When an Aspie attacks another Aspie, does it help the autism community?  Well, let’s try to find a positive here, it helps any NTs reading, understand more about how Aspies tick and most of the time, they will get to read the insights of someone who is wired differently to them and maybe that helps autism awareness overall.

And now I will go back to laughing it all off.  Blogging will never be dull that’s for sure!

PS as said blogger has publicly questioned my own diagnosis, perhaps she’d like to look at my brain scans  I also have my access to my genome with plenty of autism markers, not to forget the heritability of autism with my children being autistic, or the fact that my diagnosis was confirmed by 3 separate professionals independently, then of course there is the fact that I have another condition related to autism, or my diagnosis of SPD, or the many tests I have taken which all score me for ASD and related aspects…I trust that’s reassuring enough to put paid to further uncertainty.

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Lost in Translation…Tales of The Language and Expression of Autism as an Alien Concept

ImageThe Rorschach inkblot test is a great illustrator of the point here.  A random inkblot can be interpreted in different ways by different people, and based on what they see, a psychologist or psychiatrist can use that information towards diagnosing psychopathology.

So there are two points – the first is, that the same thing can be interpreted in different ways by different people, and the second, is that depending on a person’s life experience, training (or lack thereof), environment or upbringing and all sorts of other reasons, they can have a bias to see things a particular way.  Hence the making of assumptions, often incorrect in the case of the autistic people they are assuming about.

I have my own experiences both as an adult with Asperger’s and as a parent of autistic children, of miscommunication and misunderstanding with neurotypical people.  And it cuts both ways.

I feel sure that many parents of autistic children out there, can give testimony to their child saying, (or in the throes of anxiety or meltdown) screaming out, things that would be so likely to be misinterpreted by others, particularly others who don’t know the context or the child’s condition.  Only today, I also read of a worried mother whose autistic child had gone into school and made false accusations against her father of getting her up in the middle of the night to “beat her up” and then laughingly told the parents later on “I lied to see if you get taken away” and the mother is heartbroken.  Clearly the issues here in this particular child, and no doubt others, are low emotional maturity/awareness, low empathy, normal-high intellect and communication deficits – which can be a perfect storm for things getting either taken the wrong way or the child not realising the impact of their words or actions because of autism.  My own younger child (aged 9) has said awful things to me, in a calm and cool voice, because I won a game of snakes and ladders against her.  Later on, she will say she didn’t mean it, but that she was angry.  You would never have known she was angry by the way she said it and the delay after the game finished, before she said it.  It was meant to hurt me, because she was angry, but she had also clearly ruminated about losing the game and thought about what she could say to hurt me.

Once, we undertook a family outing to a play centre, my youngest child got stressed inside the soft play area and had a meltdown, I tried my best to calm her down but she couldn’t stop (it’s a runaway train a lot of the time) and in the end I had to take her by the hand and outside to the car.  All the toddlers in the centre were staring open-mouthed, at this older child screaming, like one of them having a tantrum – times ten.  Whilst taking her across the car park, she was screaming “Help!  You’re taking me away!” and I could see people looking wondering whether I was abducting someone else’s child.

There have been many times the children have both yelled things out at home which I cringe at, because I am acutely aware that to a neighbour through the walls, the meaning will sound totally other than what it actually is.  And bearing in mind that many autistic children are hypersensitive and hyper-reactive to small things, the frequency of screams and tears and yelling of misconstruable things, can be a big concern for a family.

Because autistic children often say things in a factual way, without explaining further, this is another cause for other people to misunderstand and jump to conclusions without looking deeper or enquiring further.  Being misunderstood can have all sorts of consequences, the child may not have the insight to realise they are being misunderstood, or what the implications are, and the parents may be the only people who really know the child and their unique way of expressing themselves and what they actually mean.  You cannot raise a child from a baby without picking up what they mean in the way they express themselves, parents of NT children “learn” their children, but parents of autistic children take this to a whole other level.  You know how a mum is often the only person to understand the particular babble of their toddler, which everyone else finds unintelligible, or how the spouse of a motor neurone disease sufferer will know by a twitch or eye movement exactly what they mean?  That times a hundred, and if the parent is on the spectrum themselves, perhaps that times a thousand.

Then there is the issue of atypical presentation of emotions.  Many parents will know of the ‘different behaviour between school and home‘ scenario – sadly even clinicians aren’t fully aware of this and many other professionals cannot grasp it and refuse to accept it is even possible.  This can lead to schools denying a child is having difficulties coping and professionals in turn, accusing parents of either exaggerating or even making up their child’s difficulties.  This can of course have the potentially devastating effect of the child not receiving the support they need, which in turn affects the child’s mental health and services refusing to accept the problem can be a big strain on a family.  I still shudder when I recall recently reading in the comments below a media article on bullying (something many ASC children suffer from) a mother describe how CAMHS’ failure to support her bullied autistic child, led to their suicide.  Rates of bullying of autistic children can be as high as 63% (possibly higher as those are only the reported cases).  If a child is bullied and the school doesn’t address the problem or accept that it even exists, because the child reports it with flat affect so it is not taken seriously, then this shows professionals are not understanding the unique nature of autistic traits and difficulties.

Autistic children may also display “inappropriate” emotions which an uneducated person would not understand.  For instance, laughing whilst feeling distressed, or want to extricate themselves from a situation or environment.  My husband does not see, that if he teases the children and they are laughing, that this might hide the fact that they are not enjoying it – I can see that they might be close to tears and the laughter disguises how they are really feeling.  Or when he has taken them out, to him they can appear to be fine and enjoying the outing, but the moment they return home either one of them (and sometimes both) can throw themselves at me loudly complaining and almost crying about how they didn’t enjoy it.  And it’s complicated by alexithymia causing difficulty understanding and expressing their emotions.  So when a parent, often the mother, can see what is happening with their child, they can have immense difficulty getting professionals and services to recognise it.  They can be accused of being neurotic, anxious, over-protective, controlling and even more serious things, when they try to seek help for their child and explain the difficulties.  Often also, an autistic child will release their distress and feelings with the person and in the place, they feel safest to do so – at home with the mother.  They are masking it in front of others and this is why the training and awareness of services and professionals is essential, as is professionals treating parents with respect and listening to them.

Life is hard enough with autism, or raising autistic children, we don’t need misjudging been thrown on top of that.

I will finish by requoting something I quoted in one of my other posts:

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9/21

“They judge me on the bit they can see and what they are able to see sadly will itself be limited by their own conditioning…” (Lyte)