“Art of Autism” Blogger Awards 2017

shy-grinning-emoticonIf anyone has ever appreciated any of my blog posts please consider voting for me here: http://the-art-of-autism.com/vote-for-your-favorite-female-autistic-blogger-for-2017/. I’ve never been nominated for a bloggers award before!

I never really check blog follows statistics, but I know there are a few of you out there.  So if any of my posts have struck a chord with you, given you a helpful insight, been a topic for debate, or anything at all – I would appreciate your vote.

Some of my most popular blog posts have been:

But there is a wide variety on the blog, some of which have been topics I have never seen discussed elsewhere.

I’m normally very behind-the-scenes and ‘hide my light under a bushel’ and therefore my blog is (as far as I am aware), not one of the high profile ones, so I thought I’d break the habit and suggest nominating and voting for me as I’m currently in need of a boost!  It will hopefully also spread awareness of autistic issues from perspectives that may not be found elsewhere and if that helps even one person, it will be worth your vote.

Many thanks!

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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.

 

“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.

“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

Females with Autism – The Tragedy of Ignorance

girl-on-path  It’s been known about for a while now, but still nothing is done about it.  The diagnostic criteria for autism were all researched on only males with the condition.  So why, we must ask, bearing in mind the recent revision of the DSM, did they not revise those criteria with this evidence in mind?  The ICD is also currently under revision, no doubt the WHO will ignore this glaring anomaly too.  Autism isn’t the only condition in which females present differently.  To my surprise, recent research showed me that this is the case with ADD/ADHD and bipolar too (but then of course they are genetically related to autism).  They say “it’s a man’s world” and in many ways it still is.  Females are suppressed, ignored and mistreated in religion, culture, employment, so it’s not too much of a stretch to point out the misogyny present in the medical profession too.  You can’t be autistic – you are a girl, just a hysterical/neurotic woman, mindset.

The NAS has information on autism in females, and research is out there highlighting that females are more able to mask their difficulties, more likely to be compliant, less likely to act out in the way males do, as well as having better compensatory abilities and yet so many females still struggle to get diagnosed with autism due to the stereotypical beliefs that prevail among clinicians.  So many autistic females are misdiagnosed too, with disorders such as anorexia (anorexia rates are higher in autistic females so clearly the cause of anorexia is not being looked at adequately), BPD and generalised/social anxiety.  Some research claims that females are genetically protected from autism and that this is why the rates are at least 4:1 for males to females.  I dispute this, I personally believe there is no difference in the rates of autism between males and females, it’s just recognition that is the issue.  In this research, it states: “Instead of focusing on specific male risk factors, our focus needs to change to understanding how the male and female brain differ and what that means for autism risk,” and “A lot of what we do in research and intervention are things we have learned from researching boys, and this needs to be addressed,” says Ami Klin, chief of autism and related disorders at the Marcus Autism Center at Emory University in Atlanta, Georgia. He points out that girls are often excluded from studies.  There is also an interesting article in the SEN magazine here.

Here is a media article about how girls with autism are being failed and the gender bias that exists.  So why, when there is so much evidence out there of this problem, are autistic girls being ignored?  As a female parent on the autistic spectrum myself, with two autistic daughters, two of us faced much difficulty in obtaining diagnosis.  The clinical expertise is just not there, and it astounds me that UK clinicians are not kept up-to-date with latest developments in autism research.

Girls are diagnosed later than boys when they do get diagnosed, often meaning years of struggling in the school system without support for their difficulties.  The later you are diagnosed the more likely you are to suffer mental health difficulties.  Females are so much less likely to be referred for assessment: http://www.examiner.com/article/girls-with-asd-suffering-silence “Although there has been a dramatic increase in the number of children diagnosed with autism spectrum disorders (ASD) over the past decade, statistics indicate that boys are being referred and identified in far greater numbers than girls (Attwood, 2006; Wagner, 2006). In fact, referrals for evaluation of boys are approximately ten times higher than for girls (Attwood, 2006).”

I wonder, how many times someone who suspects they are autistic, is assessed and not diagnosed (assuming correct diagnostic outcome).  I would imagine the numbers are infinitesimally small.  So would females be asking to be assessed without reason?  I was once asked, having said I felt different from other people, how would I know that.  That’s the weirdest question.  You can’t really explain something like that you just know, from watching and listening to others, their views, experiences, interactions etc. that you are not like them.

The biggest problem for many autistic females is that they internalise their difficulties, they are passive.  In the education system this means they are model pupils, they don’t disrupt the class and just fade into the background, so no problem – right?  This is why so many autistic girls end up with anxiety, depression, anorexia, self-harming, school phobia.  The more years you go undiagnosed, the harder it gets.  By the time a girl hits secondary school the social expectations soar and the concurrent decline in their ability to cope becomes greater.  Primary school is relatively easy.  If your daughter doesn’t have a close clique of friends it’s easier to disguise as they are all running around playing randomly at that age, friendships can be fickle.  But in secondary school, the playing subsides and it’s all hanging together in gangs gossiping and bantering, and someone with autism finds that extremely difficult, so their differences are highlighted meaning they become a target for bullies.

Lorna Wing described sub-types of Asperger’s: active-but-odd, passive, aloof and stilted.  I once did a poll of Asperger’s females on a forum and so many said they fit the passive* sub-type.  This would lead to the logical conclusion that there are many undiagnosed females out there.  If the parent doesn’t realise their child’s traits could be autism and the school doesn’t pick up on it (parents often rely on schools to point out where their child is having difficulties and advise regarding referrals and interventions) then the child misses getting diagnosed.  Boys on the spectrum will often be more aggressive and schools will then want something done about the disruption of their classes.

So why did the DSM ignore this issue?  It’s bad enough that they removed Asperger’s as a diagnosis – even Autism Speaks published a study declaring that Asperger’s is a distinct form of autism, so overall more people will struggle to get diagnosed with ASC, but as females are already at a great disadvantage in having their condition recognised, this is compounded and the problem will not get resolved unless action is taken over the diagnostic criteria and training of clinicians.  There are countries outside of the USA that use the DSM, including sometimes in the UK.  The ironic thing is, that females with autism pass on the genetics to their children (I know others outside of my own family) and research has also identified the womb environment as contributing to autism, and yet females are tragically ignored.

Edited to add this link to fabulous paper which puts it so well: Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience

Thought for the day:

Image

*Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.