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:
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http://briandeer.com/solved/mother-lied-protection-mmr-1.htm (the full 92 page judgement from that page)
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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.
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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.
This is a very hard post to write, for various reasons. There are some in the autism community who feel very strongly about autism parents accepting all autistic behaviours and that parents should not speak negatively about them. Being autistic myself, I see both sides and I don’t like seeing autism ‘martyrs’ who humiliate their children online with real names, videos and photographs of their child’s difficult moments and speak constantly of the negatives as if there are no positives, purely to obtain attention/sympathy. But we have to face facts, being an autism parent is extremely hard, especially if your child has an ASD sub-type such as pathological demand avoidance (PDA) and/or if there is a complex presentation such as additional conditions e.g. ADHD or mental health difficulties.
Autistic children – like children with other disabilities – are vulnerable. Because they are vulnerable they need additional support. It is part of their parent’s role to seek that support and help, as any decent parent naturally would. So why, are there so many professionals that actively obstruct this process and refuse the help and support those vulnerable children need?
This post is prompted by reading another blogger’s 
(NAS page updated to remove comment since screenshot taken! Still available to view here however: 
Planet Autism Blog 