“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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“Male Ego and Autistic Progeny”

male-ego Ego is a funny thing.  It makes people proud and vain at one end of the scale or insecure and paranoid at the other.  It isn’t therefore, necessarily a good thing to possess.  But most people have one, unless they have learned to master it and let such burdens go.  The male ego is something that is famously guarded, it’s something females are not supposed to dent.  A man must not feel his “masculinity” is under question.  Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.

When a man becomes a father, he often seems to see the progeny as a reflection of himself.  The participation of his seed in the process seems to take on a role larger than it played in reality.  It’s almost a primal thing.  He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self.  This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.

Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism.  Stories abound on community forums by such mothers, here is a sample:

  1. http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/father-ex-husband-denial
  2. http://www.circleofmoms.com/autismaspergerspdd-awareness/i-need-help-my-husband-will-not-discuss-or-even-acknowledge-our-son-s-diagnosis-398383

Media articles and blog posts too:

  1. http://www.telegraph.co.uk/women/mother-tongue/9602643/Accepting-Autism-one-fathers-path-to-understanding-his-son.html
  2. http://www.popsugar.com/moms/When-Mom-Accepts-Child-Disability-More-Quickly-Than-Dad-27330829

Let me tell you what that type of ego-driven denial can do to a child and the family.

Mothers usually know their children intimately.  OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does.  Mother’s instinct is a very strong thing.  Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body.  They learn every habit, nuance, whim and personality trait of that child.  They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot.  Of course, if a child is severely autistic it will be blatantly obvious from early on.

So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child.  She will question herself, tell herself she’s worrying too much.  And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too.  Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments.  He will cause self-doubt and insecurity in the mother.  He’s worried about his child being stigmatised and the disability being a reflection on himself.  So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.

You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up.  This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time.  Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much.  And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.

So mum may resort to internet research to help confirm or deny her fears.  The pet hate of the vast majority of doctors is internet research.  No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors.  Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”

Mother Research

Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious.  Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.

What does lack of diagnosis do to a child?  They exist in a world of social confusion, struggling with friendships and not knowing why.  They likely have sensory issues and find the world a painful place, wondering why life is so difficult.  They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences.  They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it.  They are likely to think themselves weird and wonder why they don’t fit in or feel like other people.  They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them.  They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult.  Mainstream school is very hard for most autistics and impossible for some.  But without a diagnosis that’s where they will be.  Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before.  By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.

The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point.  And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner.  I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support.  Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge.  So who is any parent to deny their child that right?

The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved.  For instance, some dads believe a meltdown is the child being naughty and will treat it as such.  If a child school-refuses, they may blame mum for not being firm enough.  This will likely end up being the cause of a less than close relationship between father and child.

Ostrich

So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen.  What have you got to lose?  If the child is not autistic they won’t be diagnosed.  If they are, you will be enabling them to access the support they need.  The diagnosis only needs to be disclosed on a need-to-know basis.  If the child’s difficulties are that obvious people will have noticed already anyway.  No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must.  And you want your child to have the right support.  The earlier the intervention the better for their longer-term outcomes.  You owe that to your child.  After all, this is not about you, it’s not a choice, it’s a necessity.

 

“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

10 Myths About Autism

myth busting  There is such a lot of ignorance about autism around, I blame the Government for not raising awareness with public service announcements, lack of realistic representations in the media and lack of training for those who need to have the awareness.

Here are some of those myths:

  1. Autistic people have no/severely impaired theory of mind – utter tosh, read this article: http://www.eurekalert.org/pub_releases/2006-02/uow-eqp021606.php;
  2. Autistic people have no empathy – there are several types of empathy: cognitive – being aware/accepting of, the feelings and views of others, affective – also known as sympathy, are two of those types and whilst we may have some impairment in cognitive empathy we most definitely have sympathy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494975/;
  3. Autistic people do not have feelings/show affection – we may show them differently at times, but I can assure you we most definitely have them and and whilst some people on the spectrum dislike hugs for sensory reasons, many of us are very huggable on our own terms;
  4. Autistic people do not love – we can love intensely, see the Intense World Theory of autism to see how we may actually experience the world more deeply than NTs https://medium.com/matter-archive/the-boy-whose-brain-could-unlock-autism-70c3d64ff221 and some spectrumites even have a person as the object of their special interest (we’re not talking stalkers here!):
  5. Autistic people do not get married or have families – where do you think all the autistic children are coming from! Many have autistic parents and it is largely a genetic/epigenetic condition, what is clear is that divorce rates can be high among ASC/NT marriages but then they are high in the general population too;
  6. Autistic people are violent – we are no more violent than anyone else, meltdowns are a state of overwhelmedness not aggression or violence and like everyone else, we are also a product of our upbringing, environment and life experiences, do not confuse us with sociopaths and psychopaths.  In fact, people on the spectrum are more likely to fall victim to violence than the average person.  (There can be co-morbid conditions such as ADHD which can make an autistic child especially, tending towards aggression but autism itself does not cause violent tendencies);
  7. Autistic people are mostly male – my belief is that the real ratio is actually 1:1. Because diagnostic criteria were researched and written on males, they do not take into account female presentation of the condition and therefore many females have failed to get diagnosed.   Slowly awareness is rising (although still not anywhere near good enough) and diagnoses of females are increasing, with clinics such as the UK Lorna Wing Centre currently estimating the ratio at 2.5:1 even though the official UK statistics are often quoted at their lowest, at 4:1;
  8. Autistic people all have learning disabilities/low IQ – even at the lowest functioning end of the spectrum, whilst the individual can appear to be locked into their own world and non-verbal, they can still be intelligent (look up Carly Fleischmann). To have an Asperger’s diagnosis you must have an IQ of >70 and they don’t call Asperger’s the geek syndrome for nothing – but that doesn’t mean we are all savants either, pro rata I would guess that people with AS/HFA number as overall more intelligent than the average population of NTs;
  9. Autistic people cannot hide their condition – at the higher functioning end, many of us (especially females) mask our condition – at great expense to ourselves. In fact, it is the higher-functioning autistics that end up with the most risk of anxiety and depression out of all autistic people, due to self-awareness and feeling forced to fit in with society and not getting any support for their condition;
  10. Autism is a mental illness – this is utterly false, it is a neurodevelopmental/neurobehavioural condition, in which the brain is wired slightly differently. It is not a mental illness and it’s a shame that assessment and diagnosis of the condition usually falls under the mental health services umbrella because this perpetuates the myth. In mental health services, people encounter psychiatrists and psychologists who may legally be qualified to assess and diagnose ASC, but are often not experienced or well-trained in it and therefore many adults end up wrongly in the mental health system, misdiagnosed and wrongly medicated, which sadly can in itself produce mental ill-health as a result.

So, Jeremy Hunt, MP and Secretary of State for Health – when are you going to start doing something about the lack of autism awareness?

The “square peg into a round hole” mentality and it’s value to autistics

square peg round hole

There seems to be an overwhelming desire in all areas of life, to make people with autism fit into a neuro-typical (NT) way of being.  Apparently it’s better for us to be like NTs.  It applies to how we are socialised, educated, and how as adults, we work.  There is an all-pervading view, that autistic children must be exposed as much as possible, to the same levels of socialising as their NT peers, to make them like it and get used to it – and because “it’s good for them”.  NT parents don’t always realise, that doing this won’t necessarily help their child and can actually cause much unhappiness and discomfort.  Most parents are only trying to do what they believe is best, but an NT parent can in some cases struggle to be in tune with their child in the way they need.  Sometimes of course, they are working from bad advice from professionals too.  I read on an autism forum, how a parent (who is themselves on the spectrum) tried to expose their autistic daughter to as many sleepovers and socialising events as possible when she was younger and how once the daughter reached young adulthood, it hadn’t done her daughter any favours.  Because as an ASC female she had good masking skills which may have been further honed by her typical life experiences, to the point that she could pass as NT, but suffered internally because she still has the same autistic experience as a person on the spectrum who isn’t good at masking their condition – yet feels pressured to hide her true self.

Many autistic children, having experienced a full day at school, are exhausted and want quiet time, to be alone or to find their own ways to de-stress.  Insisting on putting that child in after school clubs, visiting friends/having friends or relatives round, or going to activities after school, or having sleepovers can overwhelm the child.  Don’t forget they will have been interacting and socialising all day at school, the very thing that is challenging and tiring for them, so it’s perfectly fine if they don’t want to do yet more.  Not all children on the spectrum act out their distress either, the passive autistic can internalise it and end up depressed and self-harming as a way of dealing with their internal state.  They will have endured sensory input all day and are being asked to endure yet more.  An autistic person’s ears can actually feel more sensitive by the evening, be less tolerant of sound, as if they have reached their input limit and need a rest.

Being high-functioning and having good masking skills (as I have posted on my blog before) is actually a curse in many ways.  Because not only does society pressure you to fit in and be “normal” but you pressure yourself too because your intelligence allows you to notice your differences and that level of self-awareness brings inhibitions.  It’s not something you want to do – to go round explaining to all and sundry “Actually I am autistic, so sorry if I don’t act the same way you do, or do anything you might consider odd, just so you know.” to let yourself off the hook to be yourself.  It’s a hard thing to deny your whole being, by acting in a certain way.

Some children and adults with ASC retreat to their room and are content to just sit on the computer for instance, or pursue a special interest alone.  Parents especially, can worry about this and think they must encourage the individual out of their room to participate more in the world.  But sometimes, that is enough for that individual at that time.  Quiet and solitary activities are often the autistic person’s way of sorting out the jumble in their head from their day, and strengthening themselves to carry on for the next one.   It’s valuable time for us.  Many of us live in a very internal world, and solitary activities can allow the space to think through events of the day and make sense of them.  Some spectrumites want to socialise and are upset at their difficulties it’s true, but not all.  It’s wise to ask the person what they want, and if they make it clear they are struggling, then offer support on their terms.  Don’t feel it’s OK to make them like NT peers and force them into things they just don’t want.  Some people on the spectrum are at risk of becoming isolated if they are not supported and encouraged, but that’s a different thing than making someone do things just because it’s your view of what is normal.

I was not diagnosed until I was an adult, I went to mainstream school and was made to do all the things my peers did.  It did not change my coping abilities or limits, whatsoever.  I still struggle in communication, I still often prefer to be indoors alone, I go out and do things on my own terms and usually only when I feel I’ve had enough days indoors, being quiet.  If I start trying to fit too many things in, or pressure myself to keep up with everyone else, I quickly become exhausted and need days to recover afterwards, so it’s counter-productive.

Teaching socialising skills is a positive thing, it is known that early interaction is very beneficial to autistic children, but that still doesn’t mean that the individual will have the desire to interact to the same level as NT peers.  Sometimes, you need to let someone just “be”.  Listen to the quiet voice of what they are telling you.  It’s better to help provide the skills the person needs, but also understand they have a choice and can be very instinctive about what their own needs are.  Meltdowns are a child’s (or adult’s) way of communicating that they are in a situation that is too much for them or they have reached their limits.  So do listen to those meltdowns.  Perhaps it’s not that you are doing the wrong things for that child, but that you are just going about them the wrong way.

Mainstream schools sadly, educate autistic children in a way that means making them comply as much as possible to NT styles.  It doesn’t necessarily work for autistic children.  It’s not about making children on the spectrum “fit for society”, it’s time adjustments were made in society to allow autistics to be accepted on their own terms.  We are at least 1% of the population and rising.  In the US autism rates are now 1 in 50  and the UK rates are likely higher than is officially recorded because the NHS is very slow to diagnose females and seems to have set the bar too high, as in many cases they are failing to diagnose people (citing “autistic traits but not enough for a diagnosis”).  So as such a large minority, ought society not be adapting to us?  They put wheelchair ramps and disabled toilets in for physically disabled people, induction loops for the deaf and crossings have textured paving for the blind and partially sighted.  What about us?  It’s discriminatory to believe that an invisible disability is less deserving of accommodations and the law says we are entitled to them in many instances – but we need it across the board.

I have just returned from taking my eldest daughter to a medical appointment.  I told them she was autistic and they could see she was anxious.  When she had to have x-rays she started asking a lot of questions, clearly needing reassurance – which I was giving her, but the radiologist started getting snappy and saying “well I’m not going to force anyone and I have someone else to see” instead of recognising that she just needed to answer a series of questions my daughter needed to ask, to be reassured.  Where was that small accommodation?  She clearly didn’t understand autism and expected my daughter to be like an NT child and attributed her need for reassurance to her not being prepared to undergo the x-rays – in which case she wouldn’t bother.

I want to be me.  I don’t want to be a cultivated and exhausting version of me that suits everyone else.  I don’t want to be something I’m not and fear judgment and derision by society for being different.  That’s what all autistic people want.  We don’t want to hide behind a mask.  We will always be square pegs, so start making some square holes for us because as you can see from the picture above, when you force a square peg into a round hole, we end up broken.

(And just imagine, if rates of autism keep growing, NTs could end up in the minority – and who will be asking for adjustments then?)

Thought for the day:

be-the-change

 

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)