“Autism Assessments – Lay Parents vs Clinicians!”

hello-i-am-an-expertMost people are expert at something – even if it’s something negative!  Autism diagnosticians such as psychologists and psychiatrists, are, purportedly, the experts in assessing and diagnosing children for autism.

So those clinicians, are the ‘expert’ assessors in making decisions on your child either having, or not having autism.  This is a person (along with colleagues), who most likely has never met the child before.  The child will be in an unnatural clinic environment and with one or more strangers, so naturally will likely not behave in their usual, natural way (the older the child the more likely this is) and may actually be inhibited through anxiety.  The diagnostician will information gather as part of the assessment process, from parents, school (nursery/playgroup/college etc.) and they really merit information that is deemed a ‘professional’ source.

Parents, the Government tell us, are experts in our own children.  Yet all too often, parental evidence taken during an NHS assessment, is seen as inferior to school or other professional advice on the child.  All children behave differently between school and home (and this can be an extremely marked difference in autistics), autistic children can mask a huge amount in school and there is so much autism ignorance among school staff anyway, why should they be relied upon to any degree and certainly not more heavily weighted than parental advice.  What’s the preciousness about ‘professionals’?  I mean think about it – a teacher in charge of a class of 30+ children, who sees an unnatural presentation of the child in an artificial setting that is focused on following ongoing instruction – or the parent who birthed that child, knew them all their life in multiple different settings and sees the best and worst of them while they are unmasked – who is more likely to have the more accurate evidence to provide!

novice-expert

The questionnaires (‘clinical tools’) diagnosticians use are standard, often they have the scoring key on the form (and when they don’t, these are easily obtained) and the rest is common sense, analysing traits, behaviours and difficulties from and in, a real life context. Anyone with half a brain can information gather. It’s just looking for a pattern of evidence, and knowing what to look for in the beginning.  It doesn’t take years of training as a medical professional or psychologist to do this.  The sad thing is, many of these so-called highly qualified people, are so clueless about autism much of the time (they don’t have to have specific autism expertise as a psychologist or psychiatrist to diagnose – basic  ADOS administration training seems to be considered by CAMHS to be all they need), that this is why they over-rely on the clinical tools and sometimes ignore or minimise vital parental evidence.  You can almost see the fear of diagnosing in their eyes.

And of course all the while they disrespect parents as people seeking diagnoses for the sake of claiming benefits, they will continue to overlook parental evidence.  A little bit of respect here please!

What with the agenda not to diagnose in the first place, meaning they may attempt to derail the cause of the autism traits onto something else, such as anxiety or OCD, is it any surprise some autistic children are remaining undiagnosed. These conditions may be co-morbid to the autism, but there can be a deliberate avoidance of looking at the underlying condition that causes the co-morbidities.

An assessor does need to understand other conditions that could have some superficially similar traits as autism, hence a proper assessment should be differential. They would say that this is why it takes a qualified clinician, but there are also assessment tools for those conditions too and a little bit of the right questioning would tease out reasons behind certain behaviours, to know what they were attributable to.  Autism is after all diagnosed as a syndrome of behaviours, it’s an entirely clinical diagnosis – meaning if you have the triad of impairments you are autistic (or as they say ‘meet diagnostic criteria’ or ‘meet clinical threshold’), so there is no reason why a lay person who has done a bit of reading and has the right insights, could not in theory be accurate in diagnosing. Some of the clinicians I have come across are so inept and so reliant on questionnaires, seemingly fearful of deviating from them and unable to give credence to parental information, that it wouldn’t be hard to do better.

Of course, they are also looking for other types of alternative cause for the traits, such as attachment disorder, trauma, or something amiss in the home environment.  Whilst they do need to do this for an fully considered assessment, the parent blame culture ensures these avenues are pursued with far more regularity than they should be.  It’s another stumbling block to diagnosis.

expert-knowledge

“An expert, more generally, is a person with extensive knowledge or ability based on research, experience, or occupation and in a particular area of study.”

Therefore, who better to know and identify the reason for the child’s difficulties – it is the child who is being assessed after all, not autism as a concept – than their expert parent.  Of course this couldn’t be said for everyone, not all parents would have the ability to do the right reading, express their child’s difficulties in accordance with the concept or context of a condition, especially if it included analysing potential alternatives.  But a fair whack of parents with reasonable intelligence and some research skills and insightful, analytical approach, could do as good a job of assessing their child (or someone else’s!) for autism as a clinician (and in some cases better).  You can also pay to go on ADOS courses.  Of course it will never be, that parents will be empowered with diagnosing their children, or that any such diagnosis would be accepted.  Potential bias/ethical considerations, ulterior motives in a few bad eggs and all sorts of other reasons exist for that.  But the point being made is, that parents are usually the first to recognise their child’s difficulties and ‘experts’ need to take that gold dust on board, value it and respect it.

The NHS has to stop misdiagnosing, failing to diagnose and making such a meal out of assessing children for autism.  Why are there such ridiculously long waiting lists?  NHS NICE states that children should be assessed within 3 months of referral!  Trust what the parents are telling you, utilise their expertise and respect them.  Realise that telling a parent “autistic traits but not enough for a diagnosis” is  failing that child and their family.  They will walk out of there without any support, unless they happen to have co-morbid mental health conditions which they are treated for.  But any such treatment may be useless and even harmful, if their autistic neurology is not taken into account.  And if you do fail that child, their already compromised outcomes may become direGet your autism act together NHS clinicians, or you might just find an army of parents at your doors, who can do a better job at it than you!

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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.

“Fluffy” Forums Exclude Autistics

Fluffy dog that can't see The internet is home to a vast array of forums, forums that cater for every type of group possible.  There are support groups relating to particular conditions, whether that be for the individuals with the condition, or parents of children with it.  Autism is no exception.  Sometimes, autistics also have other conditions and will frequent the associated forums.  (We do get about online!)

Being autistic, usually means being frank.  Honesty is the logical approach for autistics, saying it as it is.  The most “high-functioning” among us (usually the ones that mask the most – use a persona to follow social rules) will use forums, sometimes being open about our autism even where the forum is not an autism-related one.  But being “high-functioning” is a curse when NTs expect you to behave exactly like they do, because they give no quarter.

Now, I have touched on this before in a previous post, the issue of being made unwelcome on forums, how sometimes it’s parents of autistic children who surprisingly, are the quickest to exclude autistic adults.  This time, it’s a slightly different angle.  It’s about a seeming culture of fluffiness in forums, where moderators are too quick to jump in and warn or ban members who are telling the truth, because despite it not being told in a malicious way, other members want to stay blind to the truth and are quick to report such posts.  Of course it’s most likely autistics who will fall victim to this happening, precisely because we do tell the truth.

Neurotypicals will all too often take offence at the truth, they want it dressed up, if spoken at all it much be couched in apologetic terms which are mere hints, rather than a bald truth plainly spoken.  But autistics don’t play those games, they aren’t the way we are wired, our brains don’t compute or lend themselves to such social games.  We are intensely confused by them.  Of course, when you are “high-functioning” and analytical, you can recognise behaviours and patterns of behaviour.  But that doesn’t mean you can take part in that – or if you can, it’s an exhausting process of going through the rules in your head and calculating the desired response.  And we may not always get it “right” even then.  I use quote marks there of course, because it might be right for NTs but who says you guys have the prerogative on communication-style?

Don’t forget, an autistic trait is a protected trait according to equality laws, so warning or banning an autistic who is not acting with malicious intent, is discrimination, plain and simple.  Would a moderator take such an action against someone with dyslexia for mis-typing their posts?  If it was possible to display a physical disability into online communication, would they say that wasn’t acceptable?

The line many moderators often draw as to what is considered unacceptable behaviour has been drawn in an unrealistic and discriminatory way.  For instance “be nice” is a seemingly pervasive (and entirely arbitrary!) criterion.  But if autistics speak honestly, they are usually defined as not having been nice, because they didn’t use the fluffy approach.  I have myself, had posts removed, been banned and felt obliged to leave forums due to this problem – and I’m no trouble-maker!  (We can’t have an autistic ruffling the fluff!) Of course I am generalising, there are NTs who do appreciate the honest approach…so this post is of course not aimed at them.  It’s more aimed at the culture allowed and encouraged to pervade by the forum owners.

It also begs the question, if forums are for people to pretend, for people to avoid the truth and to merely seek sycophantic assurances, how useful really are they?  The image at the top of this post intends to represent the point in hand, a fluffy and cute dog, but it has been bred to look like that (nature likely wouldn’t have been so stupid!) and is effectively blinded by it’s facial fluff.  So what use is it’s cute and fluffy fur?  It’s mere decoration.

And this leads me to the fact that NTs are so quick taking offence at the autistic’s lack of fluffiness, that they are missing the fact that an autistic replying to their post is trying to help them with practical solutions, telling them why something is the way it is, so they can recognise the issue and resolve or work on it.  Most autistics want to spread awareness, most autistics offer solutions by default.  Autistics often excel in a particular area (which can be anything!) and we have analytical minds, a tendency to think outside the box.  Why wouldn’t NTs appreciate that type of input and welcome it?

So if fluffy forums have a use, is it not just to have a warm, cuddly environment where people just go for reassurance and similar tales?  I’d rather have forums where you could also obtain practical advice and knowledge, where truth was the main aim.  Who wants misinformation after all.  Isn’t denial a form of misinformation?  And as for dressing up the truth, if an autistic is the person seeking that truth they might miss the hint if it’s couched in fluff, so that again, is a form of discrimination against them, a lack of reasonable adjustment they need to access the service on an equal basis.  Would an able-bodied person expect a person hobbling on crutches to use the stairs the same way they did?  Invisible disability is no less deserving of adjustments.

Of course, some of what is behind this fluffiness is the “PC Brigade“.  Rules have become more and more overbearing, control ever-present and it can feel like the “thought police“are out in force, pervading everything we do.  Maybe there is a fear of forum members taking legal action (for the truth?!) and forum owners are busy covering their collective asses at the cost of discriminating against the minority.  But the minute people stop having empathy for people with communication differences, being appreciative of genuine efforts to help, of making forums as inclusive as society is supposed to be…is the moment humankind has lost it’s humanity.

Miscommunication

Asperger’s and “High-functioning” Autism – a Disability in Law?

IndecisiveI have been prompted to write this post, in response to recent opinions and comments I have come across, challenging whether Asperger’s syndrome is in fact a disability.  Most puzzled to hear this, since it is an autistic spectrum condition and my understanding has always been, that it most definitely is a disability, I set about investigating.

For the purposes of claiming Disability Living Allowance (DLA), DLA will only be awarded depending on the effects of a condition on the individual, as there is variance between people as to degree and severity of impact.  So clearly the DWP uses the legal definition of a disability as regards impact in coming to it’s decision.  But the DWP medical guidance for decision makers (adults) list, has Asperger’s and autism on it: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/321674/a-z-adult-medical-conditions-jun-14.pdf

According to the UK Government, the definition of a disability under the Equality Act 2010 is:

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

What ‘substantial’ and ‘long-term’ mean

  • substantial’ is more than minor or trivial – eg it takes much longer than it usually would to complete a daily task like getting dressed

  • long-term’ means 12 months or more – eg a breathing condition that develops as a result of a lung infection

There are special rules about recurring or fluctuating conditions, for example, arthritis. For more details about the special rules download the ‘Equality Act Guidance’.

Here is guidance on the Equality Act 2010 from the Office of Disability Issues: http://www.equalityhumanrights.com/sites/default/files/documents/EqualityAct/odi_equality_act_guidance_may.pdf  It clearly states that:

“Only those disabled people who are defined as disabled in accordance with section 6 of the Act, and the associated Schedules and regulations made under that section, will be entitled to the protection that the Act provides to disabled people.”

So I checked out section 6 and that states:

“6 Disability

(1) A person (P) has a disability if—

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

(2) A reference to a disabled person is a reference to a person who has a disability.

(3) In relation to the protected characteristic of disability—

(a) a reference to a person who has a particular protected characteristic is a reference to a person who has a particular disability;
(b) a reference to persons who share a protected characteristic is a reference to persons who have the same disability.

(4) This Act (except Part 12 and section 190) applies in relation to a person who has had a disability as it applies in relation to a person who has the disability; accordingly (except in that Part and that section)—

(a) a reference (however expressed) to a person who has a disability includes a reference to a person who has had the disability, and
(b) a reference (however expressed) to a person who does not have a disability includes a reference to a person who has not had the disability.”

According to a legal adviser I communicated with recently, “there is dispute as to whether Asperger’s is a disability”.  To which my question is, by whom?  You will see shortly that this legal adviser knew something the rest of us don’t.  My research turned up the following, in addition to the above information:  http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.”

So the NAS considers autism a disability, they are at least part-funded by the Government and are universally accepted as the national autism charity in the UK.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85011/disability.pdf see the section on “What is a Disability” on page 4, where autism is included.

A person receives a diagnosis of autism (including Asperger’s syndrome) because they have significant impairments that affect their day-to-day life, that’s why they are called diagnostic criteria.  By it’s very nature, autism means communication impairments.  When it’s a high-functioning autistic condition, having fluent speech makes the communication impairments no less disabling, struggling to understand humour, sarcasm, nuance, infer meaning, non-verbal body language, understand the intentions of others, literalness, all put the autistic person at a significant disadvantage and can cause all manner of difficulties.

The autistic brain is wired differently from the neurotypical brain.  There are over-connections in some areas and under-connections in others.  This means the individual processes things differently, in an atypical way.  That makes everything confusing and difficult, we are an a disadvantage – how is that not a disability?  How else do autistic people fall victim to “mate crime”, hate crime and criminal acts in general?

Many people with autism also have sensory problems, gastrointestinal problems, are more prone to epilepsy and many have a systemic connective tissue disorder known as Ehlers Danlos Syndrome – there is a strong link between EDS and autism.  We are also much more prone to sleep disorders because we have difficulties with melatonin production and processing.  Rigidity is part of autism, the need for routine and difficulty adapting to change or difference, which can have a very negative impact on functioning in day-to-day life, from the point of view of basic necessities as well as the expectations society places on us.  It is a complex condition.  The very fact that employment rates in autism are so poor, is indication enough of the impact it frequently has on the individual.  The fact that children with autism need additional support in education, some with occupational therapy and the rates of co-morbidity of additional conditions including ADHD, anxiety, depression etc. are so high, speaks for itself.  The fact that the person with Asperger’s or HFA is usually painfully aware of their differences and difficulties and the pressure society and we ourselves place on us, is an added difficulty.

Now we come to how a court of law will view a disability. After all, we have the Equality Act 2010 don’t we?  According to all the above, Asperger’s and autism are considered a disability and they definitely fit within the legal definition of the Equality Act.

When an Asperger’s friend had difficulties at work, they were disadvantaged in a way which amounted to discrimination by their employer.  They were put in a position of being compelled to take legal action, which sadly they lost.  Knowing the details of the situation, I felt this was very unjust.  It appeared that the reason they lost, was because the nature of Asperger’s as a disability, does not apply to the disabled overall, as a group.

“…the claimant had failed to establish group disadvantage for the purposes of section 19(2)(b)…. The reference to sharing the characteristic must be to the protected characteristic which in this case pursuant to Section 4 is disability. Despite observations to the contrary recited in the Equality and Human Rights Commission Code of Practice on Employment (2011), but applying the approach which would be adopted to other protected characteristics such as sex and race, the group disadvantage must be all disabled persons as opposed to a discrete group namely those suffering from Asperger’s Syndrome.”

I was dumbfounded by this, it’s bizarre.  By that criteria, no disabled person could claim disability discrimination in a court of law, because there is such a huge variety, nature or type of disability and everyone’s case is therefore different (either as an individual or as part of a “sub-group” of the disabled).  This makes a mockery of the law and renders the Equality Act 2010 effectively useless. It’s like saying if an employer removed a wheelchair ramp for people who are unable to walk and are wheelchair bound, knowing they had employees using wheelchairs who would be unable to access their place of employment, they didn’t discriminate against them because not all disabled people are in wheelchairs!  The friend in question is rightly countering with this:

http://www.legislation.gov.uk/ukpga/2010/15/section/19

19 Indirect discrimination

(1) A person (A) discriminates against another (B) if A applies to B a provision, criterion or practice which is discriminatory in relation to a relevant protected characteristic of B’s.

(2) For the purposes of subsection (1), a provision, criterion or practice is discriminatory in relation to a relevant protected characteristic of B’s if—

(a) A applies, or would apply, it to persons with whom B does not share the characteristic,
(b) it puts, or would put, persons with whom B shares the characteristic at a particular disadvantage when compared with persons with whom B does not share it,
(c) it puts, or would put, B at that disadvantage, and
(d) A cannot show it to be a proportionate means of achieving a legitimate aim.

(3) The relevant protected characteristics are—

    age;
    disability;
    gender reassignment;
    marriage and civil partnership;
    race;
    religion or belief;
    sex;
    sexual orientation.

So it’s very confusing that my friend lost their case, because according to section 6 of the Equality Act 2010 this friend should have been protected.

My friend was penalised for something directly resulting from their Asperger’s and they were not given reasonable adjustments by their employer either, even though their employer knew they had Asperger’s.  It’s even more evident when you consider that the Equality Act 2010 guidance also says this:

“Indirect disability discrimination happens when there is a rule, a policy or even a practice that applies to everyone but which particularly disadvantages people with a particular disability compared with people who do not have that disability, and it cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way. As with discrimination arising from a disability, it is necessary to strike a balance between the negative impact of rules or practices on some people and the reasons for applying them.  So you should consider whether there is any other way to meet your objectives that would not have a discriminatory effect.”

It sets a worrying precedent that a court of law came to this finding.  It gives carte blanche to employers to act as they want with complete disregard to the rights of the disabled, it places the rights of the disabled on very shaky ground.  Or are they now saying that only physical disabilities count?  Are invisible disabilities such as autism not as “important” as physical disabilities?  Because that’s discrimination in itself.

So with a diagnosis of ASC, you may have been to a special school, you may have had a statement of SEN, you may have needed all sorts of support growing up, you may live in supported housing and need support workers, you may claim DLA, you may be medicated for your difficulties and you may have co-morbid conditions causing you additional challenges, but no matter how much you are discriminated against, you cannot claim discrimination because disabled people as a group, do not all have the same disability or difficulties as you.  Well there is yet another law that isn’t worth the paper it’s printed on!

Some autistics like to say “I’m not disabled, I have a difference” and I do agree that the neurology we have is a difference, because autism is not a mental illness and I am also glad of the positive attributes it has given me.  But the way society is, the environment we have to exist in because there is no choice, makes life frequently disabling for most of us, and we’d be lying if we said there were not many disabling aspects of the condition – we would not have been diagnosed otherwise.  That’s not the same as saying you are ‘giving in’ to a disability and not trying to reach for goals or to make a success of your life.  But apparently, legally we are not disabled, despite what it says everywhere you check and we are unprotected in law.  So I ask – who is going to do something about this?  Why has a law been written which excludes those with Asperger’s and high-functioning autism, whilst pretending that it does not?

Courts of Protection, MSBP/FII and Autism

human rights With Courts of Protection making decisions on not only mental capacity of adults with autism, but also on the fitness of their parents to remain as their carers and legal advocates, let’s look at whether the right decisions are being made.  A case has come to light regarding a 24 year old male with lower-functioning autism, who was deemed to lack capacity and whose mother had her rights removed and was accused of FII, the renamed Munchausen’s Syndrome by Proxy.  Here are links to three websites/blogs, (1) is journalist Brian Deer’s opinion on the case with a link to the full judgement (2) is a blog on human rights and (3) a website article commentary with some rather vitriolic and closed-minded comments about the mother (and all parents pursuing alternative remedies) below it:

  1. http://briandeer.com/solved/mother-lied-protection-mmr-1.htm (the full 92 page judgement from that page)

  2. http://ukhumanrightsblog.com/2014/10/15/munchausen-mmr-and-mendacious-warrior-mothers/ Steve Hawkins and Janet Yates are two contributors to the comments, who have also looked at the picture of what happened with this case differently than those condemning the mother and I note, that following their posts responding to the condemners, comments were closed.

  3. http://leftbrainrightbrain.co.uk/2014/10/12/brian-deer-wakefield-mmr-mother-fabricated-injury-story


Rather than discuss the details or outcome of the case in the way these sites are doing, I will instead write an open letter style response to The Honourable Mr Justice Baker, the judge who made the findings to remove the mother’s rights and decide that her son lacked capacity, with my comments in bold either replying to his italicised paragraphs or quoting them to highlight my points:

So, this is the mother deemed neglectful and abusive:

For the first 18 years of his life he lived at home with his parents – his mother, hereafter referred to as E, and father, A – where he was by all accounts generally looked after very well. His parents were and are devoted to him and have devoted much of their lives to his care. He attended local special schools and enjoyed a wide range of activities.”

The mother clearly cared for her son very well and took him for dental appointments and vaccinations (even though vaccinations are not obligatory). This is a mother who had no problems until she came into contact with the LA and other state services.

“Until his late teens the family had no contact with the local authority. At that point, however, social services became involved because his parents were looking for a residential placement where he could continue his education. There is no evidence up to that point of any conflict between members of his family and those professionals with whom they came into contact. From that point, however, the picture changed and there has been almost continuous conflict, in particular between M’s mother, E, and the local authority. M’s parents assert that they have been subjected to a malicious campaign aimed at removing M from their care. The local authority asserts that M has been subjected to a regime characterised by excessive control exercised by E over every aspect of M’s life. More seriously, the local authority alleges that E has fabricated accounts of M’s health problems and subjected him to unnecessary assessments and treatments, as well as imposing on him an unnecessarily restrictive diet, with a range of unnecessary supplements.”

It is unlikely that the mother would invent that she was told by the GP that she was an over-anxious mother, she was also calling doctors for help with her son’s difficulties – signs of abuse and neglect? I think not. Many mothers are referred to as over-anxious by GPs, who are non-specialist in any medical field and who are known to have a complete lack of autism awareness and autism training in most cases, for those very reasons.

It is the parents’ case that the mother told their GP that he had had a bad reaction to the MMR but was told by him that she was an over-anxious mother and must be imagining it. When E called the GP a second time and said she was calling the emergency services, she was told not to do this, but went ahead because M was going in and out of consciousness. The paramedics and the GP had arrived at the same time, at which point M’s temperature was 104. The GP had told the paramedics to leave. Before going, they had told her that this was a case of meningeal encephalitis. The GP had been verbally abusive to E. The above account, given to Dr. Beck, a psychologist instructed as an expert witness in these proceedings, is similar to that given by the mother to a variety of professionals”

There being no record made of what the mother says she reported to doctors regarding the MMR does not mean she did not report those concerns. I have personal experience of doctors and other professionals not only failing to record information given, but actually making false reports of consultations and other matters and I am not alone in this. Has his honour also not heard of confirmation bias? If a doctor does not believe MMR causes autism, and especially if there is financial incentive [link] for them to give the vaccination, they will be unlikely to record adverse effects, especially if they were reported verbally and they responded verbally to tell the parent that they disagreed there was a connection, because the scientific community has stated there is none. Here is just one study, easily found, which states that many more nurses submit yellow cards regarding vaccine reactions than do GPs or hospitals: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884300/

His honour admits that despite a doctor advising tests, none were referred for:

Dr Baird thought it appropriate to consider his problems under the general heading of “autistic learning difficulties”. She suggested that he undergo a range of tests but observed that, if all proved negative, there might well be a substantial genetic component to his developmental problem. I note in passing that Dr Carpenter, in his examination of all the records in this case, found no test results following this assessment and was unclear how far the genetic component to M’s autism was explored with the parents.”

So with that lack of care happening, it’s not so unlikely that verbal reports by E were not recorded – especially as professionals rarely welcome patients (or their relatives) questioning them or being well-informed, so would have likely not respected anything she said, or taken offence at her directness and hence brushed her concerns off.

His honour states:

In none of the records prior to 2000 is there any account of an adverse reaction to the MMR.”

But none of the doctors listed are specialists in vaccinations and subsequent ill-effects – why would for instance, an audiologist have anything to say about the MMR, it’s not their discipline? So the mother would logically not have reported it to those specialists.  Why is this seen as evidence of fabrication?

Regarding Andrew Wakefield, he has said on record that he did not advise parents they should not vaccinate, only that they should have the vaccinations singly instead of combined, but the Government made that option impossible to parents. This might interest you: http://childhealthsafety.wordpress.com/2012/03/14/government-experts-cover-up-vaccine-hazards/ and this: http://nsnbc.me/wp-content/uploads/2013/05/BSEM-2011.pdf

It was the hospital themselves who recommended the gluten and casein free diet: He was put on a gluten and casein free diet and prescribed liquid paraffin and Picolax for his constipation.”  So why was E criticised about this?

According to Dr Carpenter, however, there is no record in the GP notes or any other contemporaneous complaint that M had suffered a gut disorder during this 10 year period.”   Does his honour know how many people suffer gastric discomfort and problems? They don’t all go back and forth to the GP when they can get OTC remedies to deal with the symptoms, so the lack of gastric issues being recorded in that period means very little and if she was seeking alternative remedies these wouldn’t necessarily have been recorded anyway.  Negative assumption again, of fabrication.

In the following years M continued to receive assessment and treatment from a variety of alternative and complimentary practitioners, including auditory integration and sensory intervention therapy and sound therapy, as well as being treated for routine illnesses by the GP. He was not, however, permitted to undergo any further vaccinations. In 2004, E had refused to give consent for M to receive immunisations for tetanus, diphtheria and polio. In addition, M’s diet was increasingly restricted and he was given an increasing number of supplements.”  Clearly the mother was in no way neglectful, as she was taking her son for GP appointments as required. It is a parent’s right to decline vaccinations, as already stated, they are not obligatory. Is it now a crime to alter diet to find the best one for someone with gastric problems? Or to give vitamins and supplements? I think not! Clearly, the supplements being given were recommended by hospitals also: By this point, according to a list prepared by E and A, the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies. E and A said that this combination had been arrived at through the advice of the gastroenterology department of the Royal Free Hospital, the Autism Research Unit at Sunderland University, the Autism Treatment Trust in Scotland and a privately funded naturopath.”  How does this translate as snake-oil salesmen or the actions of an unbalanced mother (quite apart from the fact that vitamins and supplements are every day items – not abuse!)?

The parents asserted, as is their right to do: “The medical profession does little to recognise the chronic medical disease that autism truly is … It is for this reason that we have consistently adopted a biochemical intervention approach and engaged a variety of privately funded specialists, all of whom have made a tremendous difference to the improvement to M’s quality of life and proven that autism is a treatable medical condition. Due to the constant rejection and dismissal of our conviction that we have continually faced, we have chosen only to tap into the NHS for diagnosis of secondary medical complications of a more general nature, local dietary advice and, where specialist expertise was available, in the form of Dr Andrew Wakefield.”  Does this sound like neglectful and abusive parents? No, it sounds like parents with their own views who are perfectly entitled to have them and views which are shared by thousands of others in the autism community. They have been vilified for not conforming to the tick-box mentality that the state would have them do.

I see parents who tried their hardest for their child, planned for his future in the face of obstructiveness from the state – as many parents of autistic children find they have to do, tried to get things right for their son and wanted everything to be the best for him. The Government claims that parents are experts in their own children – clearly that only applies so long as the parents are in full agreement with the state.

Does this sound like a neglectful or abusive parent?  E made a series of complaints about the standard of care given to M, including that he suffered repeated episodes of ringworm, other fungal infections, conjunctivitis and ear infections, including a burst eardrum. As a result, E spent three weeks staying in a nearby hotel to provide support for M.”  No, it sounds like a parent wanting the best for their disabled child.

A dentist claims E was informed of the presence of an abscess but there was nothing in writing to E to say that this is so, only the dentist’s personal record (which as E points out could have been altered for the reason of fear over liability). Where is the controversy? Isn’t a courtroom the place for only facts and evidence? If it’s unprovable it should be disallowed. E emailed the dentist the following dayIn an email dated the following day, E told Ms Haywood that “nothing has shown up on the x-ray, so I am told it is likely to be sinusitis causing teeth nerves to be on edge.”  so WHY did the dentist not challenge this at the time if she knew it to be an abscess and in requirement of urgent treatment? A GP prescribed antibiotics for the sinus problem E believed her son had: “…and was examined by another dentist at a surgery near to Z House. Nothing abnormal was detected, although the notes of this examination produced in the course of the hearing indicated that E requested that no x-rays be taken. When seen by the oral hygienist at the family dental surgery on 4th September 2012, no signs of an abscess were detected. It was said in evidence that a hygienist would not be in a position to make such a finding.”  So she has taken him for several appointments during this period, there is no watertight explanation as to why she (purportedly) requested another x-ray was not given, but we know that too many x-rays are ill-advised due to radiation exposure and perhaps she had trusted what the previous dentist had told her and the interpretation of the previous x-ray results, as she understood them.  Would a mother knowingly covering up the abscess take their child for further appointments?  So you are accusing her of leaving her son in pain for 14 months, when she had been the one taking him for the check-ups and the dentist didn’t follow up when E put in writing she had been told it was sinusitis?

E also sent an email to Ms Haywood (the naturopath) saying: “This would not only explain the excruciating pain that [M] has experienced, and possibly on/off since October 2011 … that would have been horrendous for [M] to have had to cope with over the last year and just unbearable without intravenous pain relief.”   So clearly it was not her fault the delays happened and she had ensured he had regular pain relief whilst stating all the while that she knew something was wrong, yet lack of action by the dentist is blamed on E.

“It was at this meeting that the chief executive of X College – MH – first suggested that E’s behaviour was akin to “Munchausen by proxy.”   So a very rare psychiatric disorder, that is disputed [link] to exist by some experts, is “diagnosed” by an admin manager!

E seemed agitated and told the social workers that she had been giving M a hand and foot massage, although the social workers saw no signs of this on M.”  Is this for real? Who has “signs” of having had their hands and feet massaged and why is this some sort of indication of negative parenting!  E told them that they should not have visited; they should have made an appointment.”  This, along with many of the other comments, about her monologuing etc., to me says that she has Asperger’s syndrome straight away, in view of her general parenting style as well (dedicated and tenacious). So tell me how court psychiatrists instead found her to have personality disorders? This is shocking and clear evidence of high-functioning female presentation of ASC yet again being misunderstood.  The Equality Act 2010 states that reasonable adjustments must be made by all public bodies for people with ASC (or mental health issues), a reasonable adjustment in this case would have been not to misjudge her for her communication style!

No examination or assessment should be carried out without permission by his new GP.”  GPs are known to be autism ignorant, hence the RCGP has instigated plans [link] to address this precisely because it is a problem and many parents of autistic children as well as autistic adults struggle to even get referrals for ASC assessment, let-alone any co-morbid condition or health issues. Studies have shown that adults with ASC struggle to get health problems recognised and treated [link].  They are also called general practitioners for a reason.  Autistic people often struggle to identify problems with their own body and emotions, struggle to go to see their GP because of feeling intimidated or struggling to communicate and sometimes need a parent or someone who knows them very well to accompany them and help them to communicate with the GP.  Without this, their health needs can suffer.  So how this action will benefit M is highly doubtful and it is likely to in fact hinder him.

E stated that she is a very precise individual and passed on the information in a way that ensured clarity.” Another sign that she has Asperger’s.

“At the outset I was told by E that she had problems with communications attributable to a long-standing neurological condition.”  She may have all the symptoms of the condition and not been officially assessed or diagnosed, but be self-diagnosed, that doesn’t make her a liar. What she feels is down to a neurological condition is easily down to ASC.  Literalness is another sign of Asperger’s so she could have read the symptoms and decided it fit herself.  A liar is someone who knows something to be untrue but they say it anyway.

I found it difficult during the hearing to keep E on the point when she was cross-examining witnesses.”  Again, sounding like Asperger’s and it sounds as if his honour is suffering confirmation bias, because he didn’t understand E’s presentation, it was easy to build a picture against her along with the failure in understanding of the other parties and this has gone against her in a very discriminatory way.

“It is an elementary proposition that findings of fact must be based on evidence, including inferences that can properly be drawn from the evidence, and not on suspicion or speculation.”  I don’t believe that court is the place for inferences – that is assumption based on what it looks like (due to majority bias), but what it looks like isn’t always what it is!

“Eighth, it is not uncommon for witnesses in these cases to tell lies, both before and during the hearing. The court must be careful to bear in mind that a witness may lie for many reasons – such as shame, misplaced loyalty, panic, fear and distress – and the fact that a witness has lied about some matters does not mean that he or she has lied about everything – see R v. Lucas [1981] QB 720.”  This also applies to witnesses from the LA, clinicians etc. as many parents know!

…during the hearing I had the clear sense that she was relishing the opportunity to put across her case about which she plainly feels very strongly.” Again, another Asperger’s trait.

I have no doubts that E adores her son and her daughter, and that she has devoted much of her life to her children and, in particular, to getting the most that can be achieved for her son. Her devotion is not, however, selfless. On more than one occasion she said that this was case was about her and, although she was quick to retract that comment, when I pointed out that it was actually about M, there was no doubt that she felt she was the main focus of the inquiry. She was the centre of attention and, in my judgment, at times obviously enjoying the experience.”  It was about her too – it was about removing her parental rights, her rights to continue caring for the son she raised for 24 years and this is part of what directly affects her son! “enjoying the experience?” that is a subjective and biased comment which has no place in court.

It was E’s case that she had suffered from a neurological condition – vestibular neuritis …In her oral evidence she had no difficulty apparently recalling detailed events from many years ago. I have already observed that she showed no difficulty in communicating. Mr Bagchi submits that her suggestion that she had a memory problem was just a crude cover story to avoid criticism for her secret recordings. I agree.”  If E has Asperger’s, then his honour has a lot to understand about ASC communication. Someone can be very high-functioning and verbally superior even, but that doesn’t mean they don’t have deficits in communication, problems with working memory, difficulty focusing during verbal communication etc.

E used a number of tactics to avoid answering questions and ensure that the interview was focused on materials she considered important, including talking a great deal and without allowing interruption, providing emotive impressions which lacked concrete detail, and jumping from one topic to another. Dr Beck reported that she felt on occasion as if E had embarked on a monologue and she found that she had to be very firm and to interrupt her, and when she did interrupt her, E sometimes apologised and at other times protested, but invariably continued talking about whatever she wanted to talk about, without apparently being influenced by Dr Beck’s interruption. Dr Beck had the impression that E was keen to control the interview and that, if she reflected on this with her, E’s apologies were not genuine and she did not generally change her behaviour as a result.”  Yet again, hyperfocus is an Asperger’s trait, difficulty focusing during verbal communication is again, as is monologuing and digressing from the original point due to inserting much detail.

I can well understand why his family feel so strongly about him and want to do whatever they can to ensure that he gets the most out of life.”  And yet you will allow psychiatrists who likely have no understanding of ASC to brand her as having personality disorders, and claim she is a risk to him because she doesn’t fit into the LA tick-box?

“Dr Carpenter observed that most of the dietary and nutritional therapies given to M are ones that he has experienced with other patients over the years. He has not objected to them being used in most cases. He also observes that E appears to have normally sought professional help when using therapies; that she has not devised treatment protocols without advice.”  Yet you still made it a problem.

“Dr Carpenter also criticises E for failing to question the reason and purpose of any of the therapies or interventions used or seek unbiased evidence about their effectiveness.”  Yet conversely, patients are not expected to question medical treatments, which many times turn out to have bad side-effects and in some cases be the wrong treatment?  This is also very contradictory considering she is accused of being over-controlling, this is an instance where she has accepted what she was told by several practitioners and tried to assist her son based on their directions, not her own, so she wasn’t the one controlling the direction of treatments.  It is also claimed her son had 6 hours per day of oxygen treatment, how can this be possible if he was living in homes and attending college as well as having access to enriching activities?  Even if it went on while he was still at home, who is to say it didn’t happen while he was relaxing in the evenings?

It is the quantity and intensity of the supplements given to M that causes concern for Dr Carpenter rather than any single supplement.”  Really? So what if it was traditional medication that needed taking to the same degree? Double standards.

“The concern about the insistence of the diet in this case was, therefore, not so much about the use of the diet per se, (which is plainly not uncommon amongst people with autism, notwithstanding the clear view expressed in the NICE guidelines), but, rather, the fabricated diagnosis which led to the diet being imposed.”  Assumptions have led to the view that the diagnosis was fabricated. At worst, she could be considered highly tenacious and naïve, with a very direct communication style (none of which equal abuse) and at best, no different than many other devoted autism mothers out there – do they all have FII?

“Dr Carpenter notes, however, that most of the supplements appeared to have no known toxic overdose limit.”  Yet still, because you decided she lied about his conditions, this is problematic.

“By and large, it is the sheer range and number of the treatments and their indiscriminate use on an incapacitated person that gives rise to concern, rather than the risk of any harm befalling the individual.”  So it’s now a crime to have someone take a bunch of vitamins every day?

Regarding the assertion ofneurodevelopmental dysautonomia” not being in any recognised diagnostic manual, have a look here at familial dysautonomia which is a neurodevelopmental condition – for microscopic semantics you have branded her a liar again: http://www.ncbi.nlm.nih.gov/pubmed/14981733

M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.”  Are you sure? How is it then, that you describe his home life thus, in total contradiction of yourself:

I do not doubt the devotion which E and A feel for their son. In some ways his life at home was far richer than could possibly be achieved in any care setting. The range of activities arranged for him was plainly very stimulating and beneficial.”  So clearly the LA didn’t want to enrich his life the way his parents did and this is where the disputes have arisen, which therefore makes it look rather correct that as E said, they wanted to decide what to fund, to have control over it all. She is not the only person to take this view in the same situation.

Without exception, I accept the evidence of the social workers and care staff. Where their evidence conflicts with that given by E, I prefer their evidence and reject that given by E, and indeed A.”  Very unfair and biased judgement and a very slippery slope for human rights, justice and balance.  M’s loving and dedicated father is viewed as an “enabler” in much the same way as someone enabling a drug user.  His support of his wife is used as a criticism against him instead of a testament to her doing the right thing.  This is just appalling.  It is a classic example of the blame culture that exists in the state today.

Mr McKinstrie identifies several advantages of a return home. First, M clearly has a longstanding affectionate relationship with his parents and sister and they continue to be important people in his life. Furthermore, each is committed to M and in supporting him in what they consider to be his best interests.”  Yet still, you decided that purely on the basis of what are highly likely Asperger’s traits in the mother, which means she thinks somewhat differently and is hyperfocused on giving her son the best, because neither his honour nor the professionals understood this, you have branded her with at least two personality disorders she most likely does not have, and have decided that M must fit in with what the LA want and his own mother is a danger to him? The worst she could be accused of is being overzealous, but clearly has been well-meaning.  This is no reason at all to come between a mother and her son, bearing in mind he is stated to lack capacity, why would you deem her perfectly legal preferences as abuse or damaging?  Not knowing whether he would choose those preferences for himself does not mean it’s correct to assume that he wouldn’t.  Since when has failure to communicate well with professionals been a crime?  Where do you draw the line?  Are parents going to have rights removed for religious or cultural reasons?  For being vegetarians?  For parents who are on the autistic spectrum who also have autistic children needing support, this judgement is tantamount to being completely discriminatory against their specific style of communication.  This whole judgement is a farce and is a dark day for many out there, who have open-minds and don’t fit neatly into the boxes this nanny state would love to have everyone in and don’t blindly consider what the establishment says to be always correct.

Final note – his honour says:

“I merely observe that, if the parents’ assertion about conspiracies is correct, it would amount to gross misfeasance in public office and the biggest scandal in public care and social care in modern times.”

And that means that it can’t be so?  Absolutely not!  There have been multiple cases in the media of public organisations covering up, lying, withholding evidence and huge scandals – the very fact that the term ‘misfeasance in public office’ exists at all, proves that it happens.  I didn’t expect judges to be using straw man arguments or paradoxical statements.  The state is most certainly not above error as this judgement shows, nor corruption, as many have experienced.

Autism and Deprivation of Liberty: The Shocking Tale of What the State is Doing

Deprivation of Liberty The Government created an Autism Act in 2009 for adults on the autistic spectrum.  Then it created an adults Autism Strategy (ironically entitled “Leading Fulfilling and Rewarding Lives”) in 2010, to remind authorities that there was an Autism Act and that they were meant to be adhering to it – just spelling it out sort of thing.  When people kept on reporting that things still weren’t being done as they were supposed to, despite the Act and the Strategy, the Government next created their “Think Autism” Strategy in 2014 just to remind them again (just how dense can these people be!).  What is all this achieving?  The Government can hold it’s hands up and say, “Look, we made a law for you, we did our bit, look how seriously we are taking this.”  …We all know what the term ‘lip service’ means though.

Some autistic adults are getting deflected when they seek referral for assessment via their GP, some are misdiagnosed in mental health services and pumped full of medication and then some that do get assessed for ASC are told “not enough traits for a diagnosis”.  You see, organisations love loopholes: loopholes let you avoid putting your hand in your pocket.  High-functioning adults don’t usually get any support even when they are diagnosed (and those that do, it’s not obtained without a fight).  Whereas lower-functioning autistic adults that may be unable to learn self-care, may be non-verbal, may have challenging behaviours and other difficulties, are much likelier to get interventions, but have something else to fear: the state taking over their lives totally.  The Autism Act is meant to protect and ensure the rights of all autistic adults, no matter their level of functioning – so that’s two big fails right there.  The Autism Strategy (backed up by statutory NHS NICE Guidelines) also states that all autistic adults must be provided with an ‘autism care pathway’.  This can include health professionals, housing, social care and any other discipline that needs to be involved.  After all, the Government created the Leading Fulfilling and Rewarding Lives Strategy specifically for autistic adults – and that means irrespective of their level of functioning.  How did we get to the options being pretty much, either zero support or total removal of control?  What does removal of control actually mean?  It means deprivation of liberty.  How is it in this day and age, in a supposedly cultured 21st century society, we are locking away autistic adults?

Misuse of the Mental Capacity Act 2005 (MCA) is prevalent, festering away under the surface of this supposedly enlightened society, with it’s legislation and laws.  There is a Code of Practice for the MCA, but like the Autism Act and the Autism Strategy, no-one is listening.  Who is policing this?  Nobody of course.  Corruption exists in the state, we all know that, it’s a very harsh fact of life – shouldn’t happen but it does.  But when vulnerable people are having their lives destroyed, people have to rise up against it.  The House of Lords has found that DoLs are being abused and the MCA is unfit for purpose, in March of this year.  Here are just a small handful of representative stories where autistic adults have been, or are due to be, deprived of their liberty:

It’s interesting that the following article states:

http://www.theguardian.com/society/2014/aug/05/councils-struggle-deprivation-liberty-tenfold-rise-mentally-vulnerable-patients

“Local authorities are struggling to cope with a tenfold increase in assessments of mentally vulnerable patients when hospitals or care homes want to deprive them of their liberty. A court ruling in March, increasing the number of patients protected under the Mental Capacity Act deprivation of liberty safeguards (DoLS), has seen assessments soar from just over 10,000 last year, to a predicted 94,000 this year, according to the Association of Directors of Social Services.”

Could this mean the motive is financial rather than the wellbeing of the person?  Of course, it’s not only autistic people this is happening to.  As in my previous blog post on state abuse, people with other invisible disabilities such as CFS/ME and connective tissue disorders such as Ehlers Danlos Syndrome are suffering this outcome too.  It’s almost undoubtedly happening to people with challenging behaviour, learning disabilities and mental health conditions which are being mismanaged by the state, resulting in difficulties for the individual which are more expeditious for the state to deal with that way.  Conditions that are not understood, or are fobbed off as ‘all in the mind’ or the fault of parents, are misrepresented as psychiatric conditions upon which the state will act as they see fit, often irrespective of evidence and facts to the contrary.  The system has a rotten core, or at the very least, is being manipulated for their own purposes by those who work within it.  But the system as it exists, closes down complaints, different regulatory organisations state “we do not investigate individual cases”, so where is recourse for people fighting for the rights of their loved ones?  If you are the parent of an autistic child who needs ongoing support and care, when that child reaches 18 you currently have no rights whatsoever.  The NAS will attest to this fact: http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future/parents-of-adults-with-autism-your-rights.aspx

The trouble lies further with the secret courts, judges can be persuaded with cherry-picked and misrepresentative evidence, presented by local authorities.  Local authorities can pay psychiatrists to say what they need them to say.  I don’t pretend to know the whole shebang, but just what I have found out in the last few weeks, including the story of Isobel Moss (first link above) in the last couple of days, tells me there may well be a gravy train involved.  Anything can be got round by claiming that it is “not in the best interests” of the individual (the term ‘wide discretionary powers’ springs to mind here), incorrect professional opinions will go unchallenged and social services can manipulate and lie regarding parenting of the individual to make a case for the person to be deprived of their liberty.  This often means parental contact will be prevented.  So then who acts in the individual’s best interests or ensures that those interests are being upheld on a continued basis?  The parent has no say in whether their child is medicated and the health impact of side-effects of any medication unattended to, institutional abuse can be blamed on self-harm and that person is reduced to a shadow of what they could have been, with the right interventions and support (again, see Isobel Moss’s story).   Autism can bring challenging behaviour, but this doesn’t mean someone is mentally ill or lacking capacity.  Their behaviour could be due to illness, pain or sensory issues – and dare I say it, unhappiness in the environment the state has put them in.  So the state’s usual answer is to drug them up some more to make them compliant.  Quite apart from lives destroyed, deaths have occurred because of state interventions, so this cannot get any more serious:

When you know that vulnerable people are suffering this sort of abuse in care homes, you know how urgent it is that this injustice stops immediately: http://www.dailymail.co.uk/news/article-2793220/more-100-000-abused-carers-year-cases-led-46-deaths.html

The Government must do something about abuse of, and breaking of, those laws which are meant to protect people, not imprison them.  Secret courts need to come out of the shadows and provide transparency.  Gagging orders help no-one except to protect miscarriages of justice from being revealed, authorities that really are acting in the best interests of individuals will have nothing to hide.Gagging OrderAbusing individuals’ rights regarding medication, restraint, forcible removal, forced adoptions, deprivation of liberty, state abuse and the rights of those that care for and love them is wrong, inhumane and has no place in a civilized society.  Everyone has the right to a voice, and for some, that means having someone speak for them, but that someone must be someone that disregards what is the easiest option for others and does not revolve around financial incentives or keeping people in business for the sake of it.   There are people who are considered low-functioning autistic, and in the wrong hands they could have had a different outcome than they were lucky enough to have.  Read the story of Carly Fleischmann, who despite being non-verbal and having behavioural problems is an articulate and intelligent young autistic woman who surprised everyone.  See the video about Carly: http://www.youtube.com/watch?v=34xoYwLNpvw, imagine if she had been viewed as lacking capacity – which she could so easily have been, and been forcibly removed, medicated and deprived of her liberty?

If anyone is in this position with a loved one – whether it be forced adoption (whistleblower ex-SW on that link),  deprivation of liberty or any other form of state abuse, please contact Jan Loxley-Blount of Parents Protecting Children.  Jan along with several organisations and professionals, wrote to the Government (Right Hon David Cameron MP – Prime Minister, Right Hon Nick Clegg MP – Deputy Prime Minister, Right Hon Ed Miliband MP – Leader of HM Opposition, Right Hon Jeremy Hunt MP – Secretary of State for Health , Earl Howe – Parliamentary Under-Secretary of State, Department of Health) on 3rd September 2014, detailing the nature of the issue and calling for a meeting.  Let’s hope this is taken seriously.  You can also contact Isabelle Trowler the UK head SW for children or Lyn Romeo the UK head SW for adults, here: office.ofthechiefsocialworker@education.gsi.gov.ukDr Maggie Atkinson is the children’s commissioner for the UK and can be contacted here: info.request@childrenscommissioner.gsi.gov.uk.  If your loved one has had a deprivation of liberty order, the NAS has a page of information and there is a lot of helpful and relevant information regarding deprivation of liberty on the Alzheimer’s Society page which includes information on reviews of DOL decisions and helpful links.  You can obtain free legal advice about human rights here: http://lawworks.org.uk/?cID=10916  Don’t wait until it becomes too difficult to challenge decisions, usually there is a 12 month limit on complaints and appeals.  And remember…

Speak Out

The Injustice of State Abuse

1984 George Orwell The increasing paranoia and accusations against parents, of “emotional abuse” and even “potential for future emotional abuse” has taken hold of the nation.  No parent alive in the UK today, is safe from such accusations.  If you are a parent of special needs or disabled children, your risk increases.  If your child (or you as the parent) have what is termed as an invisible disability (such as autism), the risk shoots higher still.  Ignorance of the presentation of some conditions that are classed as invisible disability, means that behaviours and family dynamics can be misinterpreted.  Unwillingness to admit they got it wrong, causes professionals to dig their heels in further and continue on the path they have chosen.  Dr Nigel Speight a doctor specialising in ME, gave an interview with a Dutch presenter on his own experience of supporting families falsely accused this way.  The Government is aware of this issue, but is protecting professionals who commit such state abuse, there is no accountability for these professionals and the hypocrisy that they are falsely accusing parents, yet causing the very thing they accuse the parents of, cannot go unnoticed or unchallenged.

I read a blog today, about the so-called Cinderella law, which could see parents face up to 10 years in prison for “emotional abuse” of their children.  I am angered at the fact that many special needs children in school, mainstream especially, are being emotionally damaged by their experience in the school environment, but this is not only ignored but considered as normal and acceptable.  Let’s list some environmental factors that social services might consider emotionally damaging to a child and due to which they would intervene:

  • showing children films and videos that they are too young for and are traumatic to them
  • turning a blind eye to mistreatment of the child
  • denying the child their basic human rights to drink water and visit the toilet when they need
  • brushing off the child’s concerns that are distressing to them, thereby denying them a voice
  • punishing the child unfairly
  • forcing the child to become aware of things they are not emotionally ready for
  • ignoring the child’s special needs and not adapting their environment accordingly
  • ignoring and denying the voice of the child regarding all factors in their environment

Rightly, you would expect social services to question the child’s parenting and possible emotional abuse of the child wouldn’t you?  Now take on board the fact that this is a list of just some of the environmental factors schools subject children to on a daily basis.  Not only is this accepted by the state, but it is actively condoned.  A disability social worker actually said to me “we won’t say anything against a school” and this was witnessed by an independent person.  If a child was showing such distress over their home environment as they do over school, social services would view this as serious harm and remove the child.  Yet a very senior person in social care told me, that my distressed autistic daughter must “get used to it” because “it’s a tough world for these children out there”.  Would they use this same justification if a parent had been responsible?

So why is there such a massive double standard?  How is such state abuse condoned?  The above list represents the average school day, and doesn’t even go into the cases where physical abuse and neglect have occurred in care homes and schools by their staff.  There are never repercussions for guilty parties either.

The state can trump up charges of “emotional abuse” at whim.  Many parents are finding that fighting for provision and support for their special needs child, triggers these false accusations as a result.  Here is an Autism Eye article on this issue: http://media.wix.com/ugd/58c8f1_211d0efb4ae842f5aba2e2d5b1519d42.pdf  Children can be removed from their innocent natural family and placed in foster homes and care placements in which they actually do suffer abuse.

I am sick of the tired phrase bandied about by social workers and their defenders “damned if you do and damned if you don’t”.  It simply isn’t true.  Failings resulting in child deaths, such as Victoria Climbie and Baby P are a result of the culture in social services of preferring to target decent, innocent families to fill up their caseloads with, rather than undertake challenging work with families where there may be violence, drug abuse, alcoholism and as Dr Speight says, “they’d rather sit drinking a cup of tea with a nice family than get chased off an estate by someone with a rottweiler”.

“Emotional abuse” seems to be the ‘in thing’ with social services, families are being wrongly broken up, scarring the children and parents for life.  Some families fortunately get their children back: http://www.mirror.co.uk/news/uk-news/council-unlawfully-took-autistic-teenager-4368205 but there must be many who don’t.  Secret courts and judges accepting biased and dishonest, cherry-picked and misrepresentative professional evidence without question, ensures that for many, there is no justice.

It’s not only about the moral panic prevalent within the UK, it’s about lack of understanding and corrupt professionals.  There must be no place in our society for such people to hold support roles.  Social workers do lie, I have direct experience of it.  They rest easy in the knowledge that they are untouchable, such that they have no compunction about doing so even when independent witnesses can verify they have lied.  It’s abuse of power and misfeasance in public office, not to mention contravention of the Data Protection Act 1998 and in some cases, breach of the Equality Act 2010.

Today I read an article: http://www.bbc.co.uk/news/education-29459303 “Disabled Childrens’ Behaviour Deteriorates at School”.  When the child is high-functioning autistic, they may restrain their distress about school whilst there and release it at home where they feel safe to do so, females in particular.  This means that professionals assume that because the behaviour is happening at home, the problematic environment is in the home.  Yet, contradictorily, if the child acts out at school, they also assume the problem comes from the home environment.

When parents ask for their child to be assessed for autism, oftentimes the professionals they encounter will send them on parenting courses and look at their parenting instead of just getting on and assessing the child for autism or other issues so that they know what they are working with from the start.  This not only ensures delays to a child getting support and prolonged stress on the family, but wastes public resources.

The UK is supposedly a democratic society, a society where justice prevails and families are supported to stay together.  Instead, punitive control, misuse of power and abuse of human rights seem to be taking control steadily.  We must fight this, not become complacent, not wait until it happens to you, before you stand up and speak out.  So I’ll re-use a quote I have used before:

“The greater the power, the more dangerous the abuse”.

“Not Enough Traits for a Diagnosis”

Jeremy Hunt MP Jeremy Hunt, MP and Secretary of State for Health There is a creeping, insidious problem oozing it’s way through the NHS.  It is the failure to diagnose autism spectrum condition in people with autism.  The new claim is “some traits of autism but not enough for a diagnosis”.  Parents are being told that if their child is coping at school then they don’t need a label, schools are reporting that the child doesn’t show any obvious signs and this prevents a diagnosis being forthcoming.  Adults are brushed off without a diagnosis because they have managed to learn how to fit in – they still of course have autism/Asperger’s, but they are prevented from getting recognition of their difficulties and accessing support they need. I believe there is a secret directive to avoid diagnosing as many people as possible, or only to diagnose the most obvious cases, to avoid a drain on NHS and other state resources*.  This is of course ridiculous and unfair.  Not all people with diagnoses, or their parents, claim benefits or support – but if people need it, it should be there for them.  Autism is a condition the difficulties of which fluctuate according to the environment, and also presents differently in certain environments – such as a clinical one, so what appears one way in a given situation, may not be the full picture.

In December 2014 I became aware of this, which really goes to confirm my suspicions: http://www.dailymail.co.uk/news/article-2653518/32billion-bill-autism-Britain-costliest-condition-Total-cost-treatment-care-support-heart-disease-cancer-strokes-combined.html

Yes, the NHS is cash-strapped, and yes there are many competing demands – so the Government has to ruddy well put more money in to cover the demand.  Autism is not going away, it’s likely an epigenetic condition and the population in general is rising, so there are more cases of autism.  Failure to diagnose is short-sighted, because without support people end up with a whole raft of problems which in the longer term can end up causing more of a drain on resources than the one the NHS/state were trying to avoid in the first place! It’s bad enough that the NHS is full of arrogant clinicians, many of whom are not fully versed in autism as a condition, who fail people diagnostically every day, but when you add a furtive intention to deliberately fail to diagnose people to save money, the system is entirely broken. Autistic people can, with the right support, contribute to society in all sorts of ways, what about Leading Fulfilling and Rewarding Lives?  How can we be able to do that in the first place if the NHS is failing to diagnose people? Read this document, which I came by today (and was eternally grateful for having done so), it’s an absolutely excellent article/paper about those who fail to get diagnosed, are considered “mild” or just having some autistic traits:Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience” So it’s important that the NHS gets it’s priorities right, trains it’s clinicians adequately, and provides the service so many of us pay for.

Edited 18 months after writing this post, following the discovery that the NAS admits there is a directive not to diagnose autistics: http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx

“In the UK we are aware of situations where clinical professionals have felt under pressure from their employers to under-assess needs in order to ration limited resources.”

Also to add, that is it any surprise there are gross failures towards adults despite the Autism Act?  Shockingly, according to the DoH statutory guidance, authorities’ provision of a diagnostic pathway; adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, nobody will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and bodies are trying to save money?

Thought for the day:

“Each of us is a unique strand in the intricate web of life and here to make a contribution.”

~ Deepak Chopra

CAMHS and autism: A story in pictures…

They say a picture speaks a thousand words, so this post will be telling a story in pictures…

THE CLAIM…

useless at job (CAMHS) 5useless at job (CAMHS) 6

 

AND THE REALITY…

useless at job (CAMHS)useless at job (CAMHS) 3useless at job (CAMHS) 2useless at job (CAMHS) 4waiting list incompetence incompetence 2CBToverpaid This is a story of thousands of children on the autistic spectrum, not getting their needs met, by a service that is unfit for purpose.  The NAS website has documents entitled “You Need To Know…” regarding evidence on this problem, as reported by thousands of parents UK-wide.

The UK Government is undertaking a Parliamentary Select Committee review on this national disgrace that is CAMHS: http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/inquiries/parliament-2010/cmh-2014/

Thought for the day (and  this one is directed at CAMHS):

Your Job

Petition to make it a prosecutable offence for state & social care employees to make false records regarding patients

the-greater-the-power-the-more-dangerous-the

Petition to make it a prosecutable offence for state & social care employees to make false records regarding patients

This is an issue which particularly affects people such as those on the autistic spectrum, who are often misunderstood and misrepresented by GPs, mental health workers and other health care and social care professionals, which can have far-reaching effects on their lives and those of their families.  Sadly, there are state workers who abuse their position of power and they are not held accountable for these gross breaches.  It’s time for this to stop.  Autism is not a mental health problem, it is a neurodevelopmental difference.  Autistic behaviours are not behaviours of mental illness.  The system protects state employees who commit these abuses, which they sometimes do because they take the position that no-one will believe the patient due to their condition.  False attribution of mental health conditions to those who don’t have them, is appalling and must be stopped.  The only current recourse outside of court, is to complain resulting in annotation BUT NOT AMENDMENT of your records, which can easily be made to look as if you are just a sour individual who doesn’t agree with their truthful entries.  This is a travesty and such records follow people for their lives and any other professional looking at those records later will draw conclusions based on what they read, and there is no guarantee they will read any annotation the patient has submitted.  For someone who is a parent, those records can be used to destroy their family.  Under the Data Protection Act 1998 it is an offence to keep records that are not accurate and factual, but this law is not being adhered to by many state employees.  It is time justice was done on this issue.

Please see this link showing why there is a need to sign this petition and protect us all.

http://www.dailymail.co.uk/health/article-2318034/As-patients-wrongly-branded-drunks-heavy-smokers-Alzheimers-victims–Are-doctors-writing-lies-medical-notes-line-pockets.html

Autism Unawareness

Lesser_hedgehog_tenrec_Echinops_telfairi Meet the “hedgehog” tenrec, which isn’t a hedgehog and is more closely related to the elephant.  It lives on Madagascan islands, where there are no hedgehogs – and if you saw a tenrec, your first reaction would be to think that it was indeed a hedgehog.  The tenrec is one of many examples the world over, of convergent evolution.  There are also a variety of creatures that evolve to mimic other creatures to avoid being eaten, and can naturally be mistaken for the real thing.  You may wonder why this subject is appearing on an autism blog, of all places.  It’s because of the widespread problem people on the autistic spectrum face, in being misdiagnosed and mistaken by health professionals as having mental illnesses.  It isn’t always what it may first appear to be and assumptions are dangerous.

I will give you some examples I have recently faced myself, with my (now ex) GP who had such abysmal lack of autism awareness it beggared belief.  I have always talked rapidly, not necessarily the whole time, but episodically.  It isn’t necessarily a stress reaction, sometimes I just have a lot to say and need to get it out before I forget what it was I was saying.  The perils of verbal communication.  Rapid speech is a known feature in autism.  And yet I was automatically considered mentally ill with severe anxiety with this trait being termed “pressure of speech” being used as justification by this GP.

Likewise, my habit of wearing earplugs on a cord around my neck, to protect my ears in the event of environmental noise due to auditory hypersensitivity (another known sensory issue in autism) this was listed as a reason for some sort of mental health problem.  This GP spent a long time falsely attributing my Asperger’s traits to mental health issues and circulating his opinion within a professional network.  This is a service failing of massive proportions.  Not only did he fail to understand my ASC traits as such, but he refused to provide me simple reasonable adjustments in accessing the surgery, in direct contravention of the Equality Act 2010 and the Health & Social Care Act 2008.  I did my best to educate him, by providing him with links and quotes regarding legal responsibilities on the practice, but it was ignored.  Instead of doing his duty, he falsely recorded details of consultations and misattributed my traits to severe anxiety.  This led to highly inappropriate and unwarranted referrals because he decided that as a parent, this meant my children were at risk, without any cause.

Both my children are on the autistic spectrum.  They are intelligent, extremely loved, very well-parented, clean and healthy children.  I had chosen to home-educate them for a period, before they were diagnosed as they were unhappy at school and the younger child was not coping there.  On the basis of me home-educating, (with, by my own choice, local authority approved provision) and without asking me any questions regarding how it was going and what we did for socialising opportunities, he jumped to erroneous conclusions, decided I was mentally ill with severe anxiety and whipped up a frenzy in the professional network.  I knew nothing at the time, only finding out much later when he telephoned me and accused me of exaggerating my eldest child’s school difficulties and of causing both children’s anxiety, ignoring documented evidence from my daughter herself and professionals she had reported it to, that it was her school causing her distress.  My eldest child hadn’t yet got her diagnosis, she had recently returned to school and was being bullied there and they were not supporting her anywhere near adequately, they were in fact reducing the level of support she got which was already only lip service.  She was having massive meltdowns every day after school, begging me to to remove her from the place that was causing her such distress.  In over 70% of autistic people, there are additional conditions, with anxiety being one of them.  This GP even asked my daughter herself whether I was causing her anxiety!  She said to me afterwards “It’s not you causing me anxiety, it’s the other way round.” in reference to me dealing with her frequent school-related meltdowns and supporting her.

In the meantime, this GP was calling multi-disciplinary meetings with professionals, again unknown to me at the time, citing potential for emotional harm from me to my daughter, because he was so determined to paint me as a neurotic, mentally ill person.  And bear in mind, that he knew that I had a diagnosis of Asperger’s syndrome.  Her persisted so much with this unprofessional, ill-judged and almost unhinged behaviour, that he was having an effect on other professionals who started to believe him, even with professional evidence available of what my daughter was going through at school being the cause of her difficulties.  The stress and trouble he caused for our family was enormous.  All because he was unaware about autism, and couldn’t think any differently from what his neurotypical, blinkered, text book mentality told him.  And all the time he was continuing this way, he delayed my child getting the right support because he had everyone barking up the wrong tree as to the cause of her difficulties.  Everything I was saying, was proven to be true because my daughter was telling clinical professionals what a terrible time she was having at school, and still I got no apology.

I subsequently found out he had made false recording on my health records when I got copies, and lied about his accusations against me.  He had even made false accusations against me of “hounding” him that he circulated to a network of professionals, because I sent him 2 emails on his NHS email address – which I checked with NHS PALS was OK to use and that it was secure.  I believe he had some sort of personality disorder to behave the way he did, which coupled with his autism unawareness was a recipe for disaster.  The shame and further injustice of it is, that I reported him to the regulatory bodies that ought to take action, and they refused – citing his “opinion” was not something they could challenge!  Never mind the lies he told, false recording he did and unprofessional comments to other professionals about me or his actions delaying my daughter receiving the right support.  And he has withheld some copies of records for the spurious reasons relating to his false interpretations of Asperger’s traits and trumped up safeguarding claims, because of his already disproven emotional harm accusations.

So you see, autism awareness isn’t just about people out there not knowing what autism means, when it’s professionals that have the power to wreak havoc on families and actually cause the very thing they are mistakenly attributing your autistic traits to – anxiety – it’s about huge injustices and abuse of power and something has to be done about this.  So my thought for the day is this:

the-greater-the-power-the-more-dangerous-the and I’ll throw this in for good measure: “Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” ~ Isaac Asimov