“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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“Anosognosia and Autism – A Real Concern”

anosognosia_lobe_capture2
Image courtesy of http://www.treatmentadvocacycenter.org

Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex.  It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder.  This means, that the brain differences in those conditions, are damage to the normal functioning of the brain.  Sometimes, the term anosognosia is used to describe denial of the diagnosis too.  I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.

There is however, a dearth of literature on anosognosia in autistics.  Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia.  So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism.  Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it.  That’s not actual anosognosia though, time usually resolves this reaction.

Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons  for them.  I believe this can  contribute to anosognosia.  My eldest autistic child seems to have true anosognosia.  Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis.  And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her.  She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story.  I thought it was fear and being an adolescent that made her refuse to believe it.  But over time, I have come to realise that it’s more than that.  When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties.  Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.

She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation.  When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues.  She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help.  When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up.  When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless.  It’s very hard parenting a child who thinks this way.

Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to.  She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope.  She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”.  Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression.  She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months.  Yet she is a very intelligent child, academically excellent with a very superior vocabulary.

So over time, I realised that her denial, is beyond being mere denial.  It’s a literal belief that she really isn’t autistic, an inability to believe it.  Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her.  I thought time would make her come to terms with it, but it hasn’t.  If any support offered has been autism-related, she refused it.  She has refused social opportunities that would help expand her horizons, yet is upset at having no social life.  As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is.  She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’.  She misunderstands people a lot, she thinks people have been mean all the time.  She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.

But this worries me.  Quite a lot.  Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be.  Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood.  Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality.  Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable.  She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!).  She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.

At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity.  Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so.  And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside.  They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind.  She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected.  Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time.  High-functioning autistic females can also be masters of camouflage and masking.  And parents are elbowed out of the picture sharpish when children reach a certain age.  She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”.  So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it?  What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position?  Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources.  What happens with in situations such as DLA/PIP interviews, if they arise?  She will deny any difficulties and likely lose her DLA.

So I asked myself, do I get a professional to state on record that she has anosognosia?  Trying to foresee the implications of that causes new concerns.  On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems?  What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change?  Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen.  It’s a scary prospect.  And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them?  There are so many potential issues with this.

I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it.  Autism is an integral part of who someone is, you can’t separate it out.  If someone needs help, it’s important that they recognise that and accept help from others.  How can someone grow and problem-solve in their life if they don’t understand themselves?  We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it.  And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.

Imbuing Autistics With Motives They Don’t Possess!

Listen Intent This one’s been brewing for a long while, intermittently I will come up against this incredibly unbelievable situation, where neurotypicals respond to me with such erroneous and gross assumptions about my purported intent, it flabbergasts me.  I’m talking, actually telling me what I did and what it meant.

I do think this is a neurotypical quirk, autistic people are straightforward and honest (not always the height of popularity with neurotypicals).  We mean what we say and say what we mean.  Not so with the average neurotypical.

But I just can’t get used to that reaction, it confounds and confuses me.  How do they think like that?  It’s illogical to assume someone has a game-play behind every word or sentence.  It’s the height of suspicion and how do they not find it draining to communicate that way and analyse things in such a fashion!

So because they imbue my responses with motives they don’t possess, they judge me – or should I say, misjudge me.

Hence the neurotypical reaction, can be resultantly accusational and even aggressive.  I wouldn’t mind so much, but many of these neurotypicals are in fact parents of autistic children!  Is this the reaction they would wish for their child when they become an adult?  Where is the inclusion, understanding, reasonable adjustment, tolerance, open-mindedness and forward-thinking in their reactions?

There is a term for this behaviour, it’s called projection – to be specific, complementary projection.  It is judging people by your own standards, it’s tarring everyone with the same brush, it’s making assumptions – and it’s not on.

To do it to anyone is narrow-minded, but to do it to an autistic is ridiculous.  We are supposed to be the ones with communication deficits, so to end this blog post on a lighter note, we autistics label you neurotypicals as having neurotypical disorder.  😉 And remember…

Communicate Differently

Miscommunication

There endeth the lesson!

Parental Alienation – Or is it? Misrepresentation of Autistic Behaviours

Gavel

http://www.socialworktoday.com/archive/102708p26.shtmlParental Alienation Syndrome — The Parent/Child Disconnect

The above article totally ignores the potential for autism and possible resultant family dynamics in that situation. I will discuss just one scenario where this could be misused against a parent in an autism family.

Imagine if you will, a dad who for a variety of reasons does not accept his child could have autism. It could be that the mother sees the behaviours in an undiagnosed child, but the dad resists accepting the possibility. It could be that the child is diagnosed, but the dad does not accept the child’s differences or understand the condition. Some of the reasons this might occur is ego-based, fear, or even that the dad has autism himself so the child’s behaviours seem typical to him.

A quick Google will tell you that this problem is quite widespread.

I will quote some paragraphs from the above document and if you are an autism parent, you will see quickly, how dangerous this could be to you in an acrimonious separation situation.


2. Weak, Frivolous, and Absurd Rationalizations
When alienated children are questioned about the reasons for their intense hostility toward the targeted parent, the explanations offered are not of the magnitude that typically would lead a child to reject a parent. These children may complain about the parent’s eating habits, food preparation, or appearance.

That could have been written about an autistic child. What seems very minor or inconsequential to a neurotypical person can be hugely magnified to an autistic one. Autistics also focus on the details, so they will notice lots of little things and it will look to others like they are being disproportionate. A disgruntled father, who is lashing out at the mother and looking for blame, will of course cite this as a sign of unreasonableness and insist the mother has turned the child against them over a period of time or raised the child wrongly.

5. Absence of Guilt About the Treatment of the Targeted Parent
Alienated children typically appear rude, ungrateful, spiteful, and cold toward the targeted parent, and they appear to be impervious to feelings of guilt about their harsh treatment. Gratitude for gifts, favors, or child support provided by the targeted parent is nonexistent. Children with parental alienation syndrome will try to get whatever they can from that parent, declaring that it is owed to them.

Lowered empathy coupled with anxiety and stress can override what may seem logical reactions. An autistic child does not mean to be rude, but can be focused on those aforementioned minor details and not remember to thank, can be blunt and may focus on the negatives because the way the autistic mind thinks, there is no need to mention the positives as they don’t need resolving. Literalness can also mean that an autistic child views the role of the parent as a job, so that they must do certain things to be performing it correctly – that doesn’t mean they don’t love their parent. Stress can give rise to negative comments which the child may not perceive as mean due to low empathy. Autistic children can release some stress through complaining.

8. Rejection of Extended Family
Finally, the hatred of the targeted parent spreads to his or her extended family. Not only is the targeted parent denigrated, despised, and avoided but so are his or her extended family. Formerly beloved grandparents, aunts, uncles, and cousins are suddenly and completely avoided and rejected.

An autistic child may feel stressed at spending time with extended family members, especially if they don’t see them regularly, because it upsets their routine. Additionally, if those family members also don’t understand autism or don’t accept the child has autism, they will not be bearing in mind the specific needs of the child when they spend time with them, which can make the child feel uncertain and stressed. They are used to spending time with a mother that intuits their needs and is used to their whims. It can be a terrifying place to be plonked with family members who don’t respond the same way. If an autistic child has low danger awareness and the extended family members do not supervise accordingly, that can be a sticking point between the mother and the relatives, based on a very valid concern. That does not mean the parent is being obstructive or turning the child against relatives and if the father or his relatives don’t understand autism, it’s all too easy to assume the worst about the mother when she is entirely innocent.

If the child resists being taken out alone by the father, he might make assumptions that the mother is poisoning the child’s mind against him. But there are all sorts of reasons why the autistic child may resist spending time alone with the father that are nothing to do with the mother.

Let’s say the dad is one of those who is a real joker, doesn’t take anything seriously and he does not understand autism at all. He insists that if the child wails in protest at his jokes which are taken literally, that the child is exaggerating. If they have what seem to him to be extreme reactions, they are not exaggerating, it is their real experience, because that is how an autistic person processes it. Because of this, he stresses the child and they will only go somewhere with him if the mother goes too – which isn’t possible in the situation, so the child refuses to go. The father blames the mother for this.

Autistic children also can have inappropriate laughter when they are stressed, it’s a form of release of stress, so superficially it appears to the dad that the child is having a great time. But that doesn’t necessarily mean they are enjoying a situation. The child may return home very upset and having masked their distress whilst spending time with dad, then throws themselves at the mother complaining of a long list of upsets and say they will not go anywhere with the father again.

If the parents end up in a court situation, especially where social services are involved, the mother may be wrongfully demonised, accused of emotional harm and parental alienation and in a worst case scenario custody could be given to the father. Imagine giving custody to a father who rejects their child’s condition and does not know how to provide for the child’s needs? Any ensuing behavioural problems in the child resulting from this scenario would likely also be blamed on the mother, it would be claimed she had caused emotional damage and the child needed therapy to recover. In fact, in this situation it would be the father who needed therapy to overcome his rejection of the child’s condition and his wrongful anger against the mother that will only interfere with father-child bonding and prevent him being a good father.

The saddest irony, is that the very thing the father in this situation is falsely accusing the mother of, is the very thing that he ends up causing.

It is high time the differences of autism families are understood by all those who are involved with families, to ensure there is no misrepresentation of autism, no wrongful blame and no unjust and harmful interventions, devastating lives.