It had to be done. Due to the popularity of the ‘first episode‘ I thought a follow-up was warranted. Autistic children are suffering across the UK, from missed diagnosis, misdiagnosis and tardy and inept support from CAMHS. So here be it (read it and literally, weep…):
Most 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!
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.
“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 dire. Get 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!
Ego is a funny thing. It makes people proud and vain at one end of the scale or insecure and paranoid at the other. It isn’t therefore, necessarily a good thing to possess. But most people have one, unless they have learned to master it and let such burdens go. The male ego is something that is famously guarded, it’s something females are not supposed to dent. A man must not feel his “masculinity” is under question. Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.
When a man becomes a father, he often seems to see the progeny as a reflection of himself. The participation of his seed in the process seems to take on a role larger than it played in reality. It’s almost a primal thing. He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self. This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.
Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism. Stories abound on community forums by such mothers, here is a sample:
Media articles and blog posts too:
Let me tell you what that type of ego-driven denial can do to a child and the family.
Mothers usually know their children intimately. OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does. Mother’s instinct is a very strong thing. Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body. They learn every habit, nuance, whim and personality trait of that child. They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot. Of course, if a child is severely autistic it will be blatantly obvious from early on.
So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child. She will question herself, tell herself she’s worrying too much. And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too. Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments. He will cause self-doubt and insecurity in the mother. He’s worried about his child being stigmatised and the disability being a reflection on himself. So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.
You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up. This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time. Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much. And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.
So mum may resort to internet research to help confirm or deny her fears. The pet hate of the vast majority of doctors is internet research. No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors. Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”
Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious. Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.
What does lack of diagnosis do to a child? They exist in a world of social confusion, struggling with friendships and not knowing why. They likely have sensory issues and find the world a painful place, wondering why life is so difficult. They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences. They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it. They are likely to think themselves weird and wonder why they don’t fit in or feel like other people. They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them. They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult. Mainstream school is very hard for most autistics and impossible for some. But without a diagnosis that’s where they will be. Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before. By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.
The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point. And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner. I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support. Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge. So who is any parent to deny their child that right?
The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved. For instance, some dads believe a meltdown is the child being naughty and will treat it as such. If a child school-refuses, they may blame mum for not being firm enough. This will likely end up being the cause of a less than close relationship between father and child.
So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen. What have you got to lose? If the child is not autistic they won’t be diagnosed. If they are, you will be enabling them to access the support they need. The diagnosis only needs to be disclosed on a need-to-know basis. If the child’s difficulties are that obvious people will have noticed already anyway. No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must. And you want your child to have the right support. The earlier the intervention the better for their longer-term outcomes. You owe that to your child. After all, this is not about you, it’s not a choice, it’s a necessity.
Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex. It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder. This means, that the brain differences in those conditions, are damage to the normal functioning of the brain. Sometimes, the term anosognosia is used to describe denial of the diagnosis too. I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.
There is however, a dearth of literature on anosognosia in autistics. Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia. So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism. Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it. That’s not actual anosognosia though, time usually resolves this reaction.
Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons for them. I believe this can contribute to anosognosia. My eldest autistic child seems to have true anosognosia. Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis. And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her. She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story. I thought it was fear and being an adolescent that made her refuse to believe it. But over time, I have come to realise that it’s more than that. When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties. Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.
She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation. When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues. She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help. When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up. When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless. It’s very hard parenting a child who thinks this way.
Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to. She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope. She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”. Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression. She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months. Yet she is a very intelligent child, academically excellent with a very superior vocabulary.
So over time, I realised that her denial, is beyond being mere denial. It’s a literal belief that she really isn’t autistic, an inability to believe it. Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her. I thought time would make her come to terms with it, but it hasn’t. If any support offered has been autism-related, she refused it. She has refused social opportunities that would help expand her horizons, yet is upset at having no social life. As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is. She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’. She misunderstands people a lot, she thinks people have been mean all the time. She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.
But this worries me. Quite a lot. Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be. Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood. Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality. Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable. She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!). She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.
At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity. Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so. And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside. They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind. She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected. Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time. High-functioning autistic females can also be masters of camouflage and masking. And parents are elbowed out of the picture sharpish when children reach a certain age. She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”. So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it? What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position? Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources. What happens with in situations such as DLA/PIP interviews, if they arise? She will deny any difficulties and likely lose her DLA.
So I asked myself, do I get a professional to state on record that she has anosognosia? Trying to foresee the implications of that causes new concerns. On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems? What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change? Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen. It’s a scary prospect. And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them? There are so many potential issues with this.
I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it. Autism is an integral part of who someone is, you can’t separate it out. If someone needs help, it’s important that they recognise that and accept help from others. How can someone grow and problem-solve in their life if they don’t understand themselves? We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it. And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.
“The A Word”…autism, Asperger’s…awareness…angry!
The BBC has done something great, something admirable, it has put on prime-time TV, a much-lauded drama about a family with an autistic child. Amidst the unfolding plot of an uncle’s recent torrid affair and a grandad being pursued by his tutor for…a torrid affair, lies a family discovering their son is different. He stands out from his peers because of his quirks, he wanders (apparently miles away, through rolling terrain without his family having been aware he has even vanished from the house until he is collected by friends in a van each time) and he loves listening to music and singing along.
Yay, cry the autism community, it’s great for getting more awareness out there in the public domain. But hold the front page…hasn’t it missed a trick? Wasn’t this a golden opportunity to really address some of the most pressing issues in the autism community? Did it go anywhere near enough? For several reasons I don’t believe it did. One is the superfluous and irrelevant sex scenes (why does a drama getting a message across about autism need those!) that totally distracted from the important messages being broadcast, another is the unrealistic autism diagnosis from a single professional when children are diagnosed by a multi-disciplinary team in reality (and how amazingly quickly it happened), then there is the lack of representations of the special needs related struggles families go through before they get to diagnosis and after and still further, is the basis of the programme’s title – the mother’s avoidance of assessment and refusal to accept that her son had autism, to the point she didn’t even want the word uttered. Most families are desperate for a diagnosis so their child can access support!
But even more than those things, the one that has riled me the most by far, is the completely missed opportunity to get the message out there about autistic females. Yes, girls have autism too! The biggest single problem about diagnosis, is the masses of females not being assessed or diagnosed because of the male-researched autism diagnostic criteria. This has caused totally skewed statistics to be recorded that at best, the gender ratio is 4:1 – that is males to females. Females are so often misdiagnosed and far less referred for assessment in the first place. I firmly believe the gender ratio is equal. The renowned Tony Attwood has gone on record saying the same.
So, wasn’t this a chance to start setting the record straight and addressing the issue of all the undiagnosed autistic females out there? Struggling in school with labels such as shy, geeky, awkward, tag-along, emotional, anxious, bullied or a loner? That girls (to our detriment) mask and mimic, makes girls more challenging to diagnose – but that’s because of those damned diagnostic criteria! Highlighting this problem may have contributed to pressure to update the criteria!
There is information out there about autistic female presentation, the clinical world is in the infancy of awareness and it’s a painfully slow process. So having a drama with an autistic daughter as the focus would have been a marvellous opportunity, to highlight the superficially more subtle (but no less affected) presentation of an autistic girl, show the challenges the girl faced in school with problems such as bullying and social awkwardness but trying desperately to fit in with friends. Instead, they showed a stereotypical little boy, who avoided his peers, obsessed over music and rote citations about which band’s song it was from which year and wandered for miles. All this has done is maintained stereotypes about autism. There are in fact some males who have the ‘female’ presentation type of autism too by the way. So how useful is a programme that has continued to stereotype, for public awareness? What favour has it really done the autism community?
Doesn’t the public already think something’s up with a child who externalises their autism as many males do? Aren’t they already wondering from that behaviour if the child is autistic? What about the internalising autistic girl, panicking inside, self-harming alone at home, being misdiagnosed as having a ‘generalised anxiety disorder’ or one of the other oft-dished-out labels they receive? Or the autistic girl labelled as an over-sensitive and over-emotional neurotypical? Isn’t it about time public awareness was about actual awareness? Wouldn’t it help some parents with a dawning realisation that their struggling daughter was autistic if they saw this scenario played out on TV?
In all honesty, I only watched the first 2 episodes of “The A Word” I found the carry-on’s around the family too distracting and it wasn’t realistic enough to keep me watching, holding my breath saying “Yes – yes that’s it!” in recognition.
TV Dramas are a clever way of appealing to the masses on a subject matter about which they might not otherwise be interested. Until it happens to them. So, BBC, as far as I am concerned you missed a trick big time here and is there any going forward now? Will the public be interested in another autism drama, I suspect not, the novelty factor has been played out already.
However, ITV, Channels 4 and 5 et al, if you are reading, maybe you can do a better job and will give more thought to the power you hold in your hands to get out the best message you can with the medium you have. I will watch that space with interest to see if any bandwagon efforts in the right direction appear – so it’s over to you.
Edited to add on 28.5.16 this screenshot of a psychologist talking about yet more negatives of “The A Word” (and which hints at the parent blame culture causing so many autism families trauma):
This is a challenging post to write, but never one to shy away from speaking the truth, I decided to go ahead – and hope it would make people think – and not jump to defensiveness. Buzzing around in my head, were questions such as “will it offend people?” and “will it alienate people?” As an adult with Asperger’s, I have been only too aware of my differences over the years and the difficulties I have faced. Granted, I was not diagnosed as a child, so I existed without any of the supports that are available today for autistic children and it could be called into question whether I would have fared better with those supports – but I suspect not. I slipped under the radar – as do many Asperger’s females, people might have thought I was shy or a bit anxious, but no-one ever questioned me being “normal”. The majority of high-functioning adults of today, were not diagnosed as children, many are still undiagnosed, but we exist. Childhood supports or not, you can do nothing to undo the fact that you are autistic – and will always be autistic.
As an autistic adult using the virtual world of online forums, I have found that there is just as much (in fact probably more) risk of communication problems with others as there is in “real life”. I wondered if I was singularly argumentative; didn’t realise that my directness was viewed as just plain rude by others and I questioned myself. But this still didn’t explain it, bearing in mind that no matter how cross someone might make me online, I remain calm and collected and respond as professionally as possible. At times this seemed to inflame people even more, because they were losing their cool and I wasn’t. And what puzzled me even more, is that these were people already immersed in the world of autism, who were criticising ASC traits, or communication style, in an adult, yet their children had those same traits that they were asking society for understanding of. Then I started reading of the experiences of others on the spectrum, who also faced problems on forums. It struck a chord, when one person described themselves as being targeted and pushed out, by parents of autistic children, who they assumed would be grateful for a window into the mind of an autistic adult, to enable them to understand their own child better.
I have found this too and I am still trying to understand why. Of course there are the social games that exist in NT society, those games we on the spectrum fail to understand; do not play and tend to either fall victim to – or are blindly oblivious to. It stands to reason I guess, that those games will be the same on forums. I have realised that parenting forums, seem to be about exchanging mutual stories and supporting one another, but that the expression of oneself as an Asperger’s adult, doesn’t always seem to be appreciated, especially if it involves the hard facts of life. The NT parent often doesn’t seem to want to face, that no matter how much supporting/treating/attempting to “cure” their child, they will still be highly unlikely to have the same life as an NT. They will remain autistic as an adult, even if they are existing in a mainstream way, they will have anxiety over things that NT’s won’t; their sensory difficulties will always play a part in their lives even if they manage to mask the impact of them for periods of time; they will always need a certain level of control; they will usually be exhausted by socialising and may avoid it; they will misunderstand others and be misunderstood by them; struggle in employment (around 75% are unemployed or only in part-time employment) and relationships – including romantic ones. Even those with the so-called mildest form of autism will struggle and will be prone to mental health issues, due to trying so hard to fit in, but always having difficulties doing so, or it just being so plain exhausting. This link gives some examples of how autistic adults struggle: http://www.iancommunity.org/cs/adults
Parents love their children and desperately want the best for them (I’m a parent too!), are trying to ensure they are able to “fit” into society, but this is part of what is driving the lack of acceptance, lack of understanding, lack of reasonable adjustments, for us ASC adults. We don’t want to have to conform to an NT way of being, we want to be allowed to be us – and for that to be OK. NTs wrote the rules for society, but they often don’t fit us, why can’t new rules be added, most of the existing ones are ridiculous anyway! It’s why I challenge my autistic children’s schools to make those adjustments, to adapt things for them, because they are suffering in being forced to fit in and change is needed. If you don’t believe me, ask yourself why places like Autscape and Autreat exist.
So I came to the realisation, that it is because an autistic adult is an unwanted reminder, an uncomfortable acknowledgment for some parents of autistic children, that their child will be like me one day. An autistic adult, still having struggles. For any parent, they want their child to have equality and be able to achieve. Admitting that it might not happen, certainly not the way they hoped, could be a tough thing to face. That all those supports that help their child get through school, and catch up with childhood milestones, might not bring the idealistic end result they hoped for. There are parents veritably traumatised by their child’s autism diagnosis, they go through a kind of grief, depression and sadness. So perhaps they plough all their efforts into obtaining those supports, hang on to the fact that it must be helping and their child will somehow “recover” enough to not seem autistic. But what they don’t see, is that sometimes, this might enable an autistic child to grow up to “pass” as NT, to mask many of their difficulties, but inside, they are often still going through the same torments, difficulties, challenges and stress as they ever were. An acquaintance told me once, that she had immersed her Asperger’s daughter in as many play-dates and sleep-overs as possible as a child. She grew to be a past master at fitting in, but it did her absolutely no favours as she was suffering greatly inside as a young adult. The pretence actually adds to the pressure and the stress we suffer. It’s what I advocate as being ill-advised, the square peg into the round hole mentality. I understand that it is doing a child a service by giving them speech and language therapy, potty training them and calming aggressive tendencies, but there are so many autistic traits that need to be accepted as just, OK.
It just saddens me, that NTs often want to play those games, to make themselves feel better. So here are some questions for NTs to ask themselves: Can’t we celebrate some of the positives of having autism? Can’t we allow autistics just to… be? Do we have to be shocked and angry when someone tells the honest truth without malice? Do we have to shut people out because they don’t conform? Do we have to expect them to be like “us”? Do we have to continue to force these square pegs into round holes? Because society is currently blinkered, does that mean it has to continue to be? When we face an autistic adult, can we not stop turning our faces the other way? Can we not stop criticising their traits as something to be ashamed of, or ganging up to ostracise them? Is this what we want for our children? When our children are bullied or ostracised in the playground, is this what we want to replicate as adults? Or do we want to be like those playground bullies?
So next time you are online (or even in “real life”) and you don’t like an ASC adult challenging the status quo, delivering information in a factual way, or saying the things no-one else will say, maybe try opening your mind and realising that if we don’t do it, perhaps no-one else will. Everyone has their purpose in life. Some of the greatest minds that have existed are thought to have been autistic. Sometimes, it’s the black sheep that makes the biggest mark. And that person allowed to be themselves, could be your child.
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:
http://briandeer.com/solved/mother-lied-protection-mmr-1.htm (the full 92 page judgement from that page)
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.
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 day: “In 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 of “neurodevelopmental 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.
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:
“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.
Abusing 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.uk. Dr 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…
There is such a lot of ignorance about autism around, I blame the Government for not raising awareness with public service announcements, lack of realistic representations in the media and lack of training for those who need to have the awareness.
Here are some of those myths:
So, Jeremy Hunt, MP and Secretary of State for Health – when are you going to start doing something about the lack of autism awareness?
They say a picture speaks a thousand words, so this post will be telling a story in pictures…
THE CLAIM…
AND THE REALITY…
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):
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.
Planet Autism Blog 