A detailed step-by-step analysis and response to the Channel 4 Dispatches programme “Skipping School: Britain’s Invisible Kids” on 4th February 2019

Home Education quote Dispatches introduces Anne Longfield, the Children’s Commissioner, as the “eyes and ears of children in the system”. An interesting statement, considering how much harm is being caused to children by the school system, which Ms Longfield cannot be oblivious to and which goes on, continuously unaddressed.

There followed, abrupt verbiage from an apparent child welfare expert (who is later explained to be a consultant social worker named Gladys Rose White), as one of many experts who feel “alarm” about home-education. She is filmed, completely out of context, making statements about having had an image of a “pale child, with teeth falling out and bleeding gums” that was “harrowing” to her.  A bizarre and shocking statement to make about home-education, that didn’t make sense and was simply ludicrous. Clearly it was intended to scaremonger and sensationalise, to gain public agreement as to the unsuitability of home-education, the context for Ms Rose White’s statement was not explained until much later in the programme.

Dispatches stated that home-education figures have doubled in 5 years and that there are now more than 60k home-educators in the UK. Well, isn’t the Government fortunate, that all those children (many with special needs that cost additional money to support and who have been failed and traumatised by the school system) are being educated and kept safe, happy and well by their parents, at no cost to the Government.  Imagine what a massive amount of money they are saving, what heroes these parents are. It takes a lot of dedication to devote yourself 24/7 to your child’s entire wellbeing, education, stimulation and support, and to pay out-of-pocket expenses to do so as well.

The fact that schools are (supposedly) “tightly regulated and supervised” was given as a reason to believe that the education being provided by schools is of good quality. I’d love for Anne Longfield and Dispatches to explain in that case, why there are so many articles on the following:

  1. children not being provided enough skills for future life by the UK education system [1];
  2. funding for UK schools being insufficient [1];
  3. lack of teachers [1];
  4. poorer children being failed by UK education system [2];
  5. exclusions are occurring across the UK, the children often have special needs and often exclusions are illegal [3];
  6. boys are being failed by UK schools [4];
  7. autistic children are being failed by UK schools [5];
  8. adopted children are being failed by UK schools [6];
  9. children with a variety of special needs are being failed by UK schools [7];
  10. all children are being academically failed by UK schools [8];
  11. bullying is rife in UK schools and as a result, HALF of UKs children are scared to return to school after the holidays [9];
  12. ironically, only 11 hours ago at the point of writing this, the Government not only admits [10] that the Government is even failing early years education but that:

 

“A strong home learning environment can have a major impact on children’s life chances. The Government needs to come forward with a comprehensive strategy for early years services, including children’s centres and family hubs, to give disadvantaged children the best possible start in life”

 

Rather hypocritical then isn’t it, for Anne Longfield to come along and portray home-education as an abuser’s paradise and imply that home-educating parents aren’t up to the job.  The Government clearly recognises that up until legal school age (when children are often too young to speak up about abuse or neglect!) parents are trusted to be that ‘strong home learning environment’.  What changes when a child reaches five? There are umpteen more articles and statistics showing that the UK education system is not working well for our children.  It’s affecting their mental health negatively.  There are a variety of reasons for this, which would take more time to explain that I can devote here. But if Ms Longfield is truly “the eyes and ears” of UK’s children – shouldn’t she have instead, been invited by Dispatches to present a programme on our failing education system?  Yes, in case you missed it, Anne stated that not only did Dispatches invite her to do the programme (although how staged that is I don’t know) but that they even provided her statistics to quote from and details of a couple of serious case reviews into child deaths.

So, is this whole exercise simply for Channel 4 to obtain ratings by outraging people, or are there machinations behind the scenes (which would appear to be so) whereby the Government has entered into a mutually beneficial exercise. The Government is removing more and more rights and control from it’s citizen’s lives and stripping parental rights to bring up their children in the way they think best – and that’s what this is really about.  And perhaps for some parents, it is the very fact that schools are so “tightly regulated and supervised” that they don’t want their child in such an environment, where their true creativity and wonder is stifled, where they learn to conform like robots, rather than discover and learn in a relaxed, fun and exciting way.

Anne Longfield went on to say how home-educated children can fall between different services and professionals, “out-of-sight”, that LAs don’t know where they are. How is that so? Why is there an assumption that by being home-educated, means by default that children never see a GP, dentist, optician, hospital clinician, private professionals including OT, psychologist (to undo the trauma many have been caused by the school system) or speech and language therapist.  Because yes, as state services are often so shoddy, failing to diagnose many children’s difficulties or offer the right type of support, or simply leave children on interminable waiting lists, home-educating parents like other special needs parents, not infrequently do end up having to find the money for private professionals, to help their children.  Then of course most HE families have relatives, friends and acquaintances, by whom their children are seen.  They are also out and about in the community.  Professionals aren’t the only people capable of judging if a child is OK anyway.  If they were, there wouldn’t be any Daniel Pelka’s or Baby Ps.  So the description of home-educated children as “invisible” is nothing more than a lie.

Then of course, there are many home-educating parents who belong to organisations such as Home-Ed Info[11], or the Home Education Advisory Service (HEAS)[12] which offer plenty of excellent advice and signposting to resources, but also there are plentiful local HE groups (a variety on Google groups for instance) where families meet up for socialising events, outings, sharing of parental expertise as a resource and even organising and funding private tuition groups for their children.

The Children’s Commissioner sees herself as a “defender of children’s rights” and “speaking up for children”, so Anne, why aren’t you telling the truth and speaking up for the many excellent HE parents out there who go out of their way to provide a good education for their children and of the huge benefit to those children and their rights to HE as an option? Whose children are much more relaxed, have better mental health, have freedom of expression and learn in a way tailored to their individual needs. Because Anne, there is no legal requirement to follow the National Curriculum, even for private schools and academies, let-alone for parents. Oh, did I mention that teachers voted the National Curriculum as unfit for purpose [22]?  Children are all unique individuals, not automatons and they all learn differently.

Anne Longfield believes that only schools can provide the “care, education and social skills needed”. In view of what I have described above, clearly that is not the case whatsoever and these types of statement have been made very deliberately to scaremonger and denigrate home-education.  Autistic children, who struggle greatly with socialising, can be utterly alone and bullied in the midst of a school full of children.  If that list above of all the failings going on within UK schools is supposed to be the right “care, education and social skills needed” according to Anne Longfield, then she should step down from her job without further ado, because such opinions in the face of evidence of harm, in someone tasked with speaking up for children, are clearly extremely disturbing.

Just to add to the shock tactics still further, Anne then makes an outrageous statement that in Germany HE is “outlawed”, but that in UK all you need to do is de-register your child by sending a letter to the LA.  Well, well, well. Who’d’a thunk it, a parent deciding what’s right for their child’s education – I mean, UK law states that the legal duty for their child’s education belongs to a parent, so what are parents doing complying with the law, strewth. I saw some great Tweets responding to this ridiculous statement:

Home-education Germany banned

Home-education Germany Nazis

How about the fact that home-education is legal in: Australia, Canada, Belgium, Colombia, Denmark, Finland, France, Israel, Italy, New Zealand, Norway, Sweden, Switzerland, USA (14 countries) and possibly other countries (source: http://home-ed.info/heabroad). Strangely omitted to mention this fact, did ‘ole Anne.

So Anne met up with some HE families, first up was Marcello. Ms Longfield  could barely hide her contempt, when she said “Marcello ‘thinks‘ (heavily emphasised with a sneer) he can do a better job”. Well Anne, considering that long list above, of all the serious ways schools are failing children academically, emotionally/mentally and practically, I’m sure Marcello is doing a better job.  Anne wanted immediately to know what Marcello’s son Coby liked about school, totally ignored his reply of “not much” and clearly only wanted to hear positives about it, so after she had pushed him to find one, she gave a big exaggerated “oh yeah”, when Coby said there was one thing he missed about school, which was seeing his friends every day.  An empty, unspoken question remains though Anne, despite you intentionally making it appear Coby was socially isolated. Does Coby instead see his friends 3-4 times a week, or every weekend? That’s not every single day as he would at school, but would be plenty anyway (and in a far more natural environment too).  Maybe he does, but your questioning deliberately made it appear he was losing out. Notably, Anne didn’t ask Coby what he liked about home-education, she left poor Marcello having to justify why it was a positive experience, in the face of her obvious disapproval.

When Anne asked Marcello whether he had opted to have a LA visit to check his educational provision, Marcello replied that he had “declined”, but Anne immediately reworded this to say that he “refused”.  Yet more parent-blame attitudes, portraying parents as unreasonable and obstructive, with the unspoken and lingering implication that such parents have something to hide and aren’t acting in their child’s best interests. The stench of extreme bias and disapproval was making me wilt by now, but I stuck it out until the end of the programme.

Anne spoke of how LAs had been surveyed about home-educating statistics, but we should be asking why there was no survey of home-educating parents to ensure the full picture was provided.  Isn’t the horse’s mouth more accurate?  Or is being mere parents not good enough, are they not trustworthy as a data source?  Never mind, the proof of the pudding is evidenced further down this article.  If this is the sort of reporting that Channel 4 Dispatches does, then I will never believe anything another of their programmes states.

Anne then visited Bailey, and his (dyslexic) mum Sam and narrated how concerned she was, about the fact that there could be multitudes of parents out there (meaning like Sam, who was displayed like a sacrificial lamb) who struggled to teach their children and who were without resources or adequate knowledge. But instantly I spotted the issue with this portrayal. There are in fact tons of resources out there including: free and paid websites for all subjects; subject books complete with tests freely available on the high street or online [23], not to mention private tutors and as mentioned above, other parents in the HE community who share their expertise as a resource to other HE families – and these families network and swap, donate and share other resources.  So really all it boils down to, is LAs needing to offer HE parents fact sheets with information on resources and how to link-up with other HE families, just in case they haven’t discovered this rich ocean of opportunities alone. Job done.  Only Anne wouldn’t have it. It turns out Sam did get hold of a list of websites at least, following a visit by an LA official, yet Anne wanted to scare Sam and make her lose confidence and spoke of how daunting the list was.  Once the LA official had visited, Sam’s educational provision must have been deemed at least satisfactory, otherwise Anne would have wasted no time in proclaiming she was failing her son on national TV.

Anne then discussed schools off-rolling. This is a big concern and there’s not much I can add here, other than, parents should never be forced into home-education because of poor practices by schools. The case of an autistic girl who this happened to, was then shared. The problem is, 70% of autistic children are forced into mainstream and it doesn’t work for so many of them. The Government isn’t providing enough special schools and almost none whatsoever geared towards autism.  The noise, chaos, uncertainty, socialising difficulties and unmet needs, make it a living hell for most autistic children [5]. Special Needs Jungle recently wrote articles on school-induced trauma [17] & [18]. When needs are unmet, behaviour escalates and the child can end up excluded.  There is a type of ASD known as pathological demand avoidance and the educational and support needs[13] of this profile, differ significantly to those of typically autistic children. Unless children with PDA are correctly diagnosed and supported, they can react with very extreme behaviours. Many NHS Trusts refuse to recognise this diagnosis (in breach of NICE Guidance, because PDA is an ASD and NICE requires the diagnosis to describe the child’s profile) and the standard ASD clinical tools aren’t very good at identifying this sub-type. This is a disaster waiting to happen for the child and their family.  The Children’s Commissioner spoke about barriers to learning, but when a child is autistic and in mainstream that is the barrier to learning.

Ms Longfield comments that parents don’t often know the law, the answer is simple. Inform them of it. Inform them of their rights, duties and provide information on resources. Instead of a knee-jerk reaction to HE and saying we need a register and to have inspections, look at WHY so many parents are HE in the first place and the fact that so many are children with SENs in the HE community. Fix the education system, put money in, build autism-specific schools, ensure all teachers have autism training and have resources to correctly support all children with SENs and you will find HE numbers would decline. If school is traumatising children, what parent in their right mind would make them continue going? That would be neglect. There are already more than enough suicides from bullying and pressures of exams, in schools. You don’t hear of children committing suicide because they are being home-educated though, do you Anne.  Anne says a child’s wellbeing must be put first, she talks about safeguarding, but if she really believes what she says, she would not only understand why parents are home-educating but appreciate the amazing job the vast majority of them do and how it is the best thing for their children compared to the alternative. And let’s not forget, the current law fully covers instances where parents might not be providing an adequate education and LAs can take parents to court to obtain an order for the child to be returned to school.  Just as if there is any reason to suspect a child is being neglected or abused, the LA has powers to investigate that too, whether a child is HE or not.

Anne wonders about HE children’s education being negatively impacted, about them losing out, but not only does research absolutely not bear this alleged concern out, but Anne needs to think bigger.  Children with SENs may mature later than typical children, this is definitely the case with children with conditions such as ADHD and ASD, which are both neurodevelopmental disorders.  Learning is lifelong, even if a child struggles academically and a parent delays their pace of learning during home-education, that doesn’t mean they won’t catch up, at a pace that meets their needs, later on. But most HE children are not losing out, quite the opposite in fact. If a HE child with a disability struggles to learn, it is almost definitely due to their SENs, not deficits in parental provision.

Evidence shows that HE children are in fact faring far better than school-educated children, so Dispatches have presented a totally dishonest programme and Anne Longfield should really be ashamed. She should be praising, endorsing and encouraging home-education (particularly where it is by parental choice) because it’s better for children! [14]

“studies confirm that home-educated children on average achieve higher intellectual scores than their school-going age-mates, regardless of whether the parents follow an existing (school) curriculum or whether education is child-led (ACTP, 1997-2001; Calvery et al., 1992; Galloway, 1995; Ray, 1994; Ray, 1997; Rothermel, 2002; Rudner, 1999; Sutton & Oliveira, 1995). Only Tipton 1990 reports no difference in the scores of home-educated children.

Some studies have even found that the lead of home-educated children can be considerable. Six-year-olds had a lead of one school-year, which increased during their school career to four years at the age of fourteen. This means that an average fourteen-year-old home-educated child is comparable – in terms of schooling – to an eighteen-year-old who goes to school (Ray, 1994; Ray 1997; Rothermel, 2002; Rudner, 1999).

HE also produces more well-rounded, mature, inquisitive children who are far better prepared for life than school-educated peers. They have far superior outcomes and score better, on all fronts! [15]  And this isn’t new information, there are quite old articles around about this. [16] (August 2000 article*) so the Government knows this. But they have an agenda for control and stripping of rights, an overlord mentality – and that’s what this is really about.

* “It discovered that home-educated children of working-class parents achieved considerably higher marks in tests than the children of professional, middle-class parents and that gender differences in exam results disappear among home-taught children.”

Anne Longfield stated that no matter how bad it is for a child in school, removing children from school is not the answer. Wow – and this is someone tasked with the best interests of children.  In view of everything shown here, I would like to know why ever not.  Of course for those parents forced into HE, improving the educational system and ensuring their children’s needs are met, is the answer. But the public sees no evidence of that any time soon.

The Children’s Commissioner then focused her disapproval on Leo and his siblings in Leicestershire. Leo’s mum’s face had a harried look, I wondered if it was her child’s special needs putting her under stress and making her appear that way.  Anne was keen to raise an eyebrow at the children’s lateness getting out of bed and a history of persistent lateness when in school, completely overlooking the fact that the family were dealing with special needs (health conditions/disabilities) and many children need a lengthy period of de-schooling once they leave school for HE. But then, she didn’t understand anything about HE and why it was better for many children, which was clear. The Government doesn’t get to dictate what time people get up and what time they do their learning.

It transpired Leo’s mum had a harried look, because she had been accused of fabricated and induced illness (FII) and of “keeping her children at home” and was under supervision by social services. And there we have it.  Another family with special needs and disabilities that were falsely accused by professionals, who wanted to disbelieve or misrepresent the child’s needs and put barriers in the way of support and help they needed. Falsely accusing parents of FII is a well-worn tactic towards special needs families, as testified all over the internet in blogs, forums and social media.  And it harms children, so we know these child protection “concerns” aren’t really about protecting the children, they are far more often about blocking state resources, covering-up NHS negligence, or punishing parents who persist in seeking support for their child.  There have been media articles about the harm these investigations cause to entire families [19].  Notably, the phone rang whilst Anne was visiting Leo’s family, social services were full of apologies all of a sudden and told Leo’s mum sorry, they didn’t even know why they had an open file as the family never met the criteria for child in need plans in the first place. Funny that.  No wonder this mum was clearly relieved, described it as having been “hell” and only half-jokingly, asked Anne Longfield whether she had told social services she was visiting. She then made a dark joke about “the Children’s Commissioner – or child snatcher” when Anne wasn’t around. What’s being done to special needs families is very wrong.

Anne said the biggest concern was about children’s wellbeing and said between 11-55% of HE families were known to social services” but for what reason? Doesn’t mean they were known as neglecting or abusing their children, being addicts or mentally unstable.  Considering the amount of children with SEN and disabilities being HE, many of them would have child in need plans and therefore of course would be “known” to social services.  Because the law says that every child with a disability is defined as a child in need, although they don’t all have a CiN plan. So this comment is somewhat disingenuous. Also, the fact that so many schools maliciously refer families to social services for child protection investigations, because the school isn’t meeting the child’s needs and the parent points this out to the school. Schools go on the defensive and start accusing their parenting [24].

Rochdale Council were interviewed and they said they don’t know if there is a concern, if families are not engaging with them (i.e. having educational inspections) but there is no reason that plenty of other professionals aren’t seeing the children as mentioned earlier, along with relatives and other adults in the community.  All the information provided in this programme was designed to mislead this way.

Someone by the name of Katy Fosgale-Hopper made a statement about there being less abuse (or chance of it) if a child is in school. But this is factually untrue.  Did they think nobody would check these claims?  The tragic case of Khyra Ishaq was cited.  But not only was she not home-educated, but she was seen by multiple professionals who all failed her – and what about Daniel Pelka who was starved and beaten to death right under his school’s nose?  Or the disabled, non-verbal 4yo autistic boy, Chadrack Mbala Mulo, who starved next to his epileptic mother’s dead body at home, because school staff didn’t check why he hadn’t been into school. Anne stated that there had been five ‘other’ cases of HE children who had died in ten years, but how many more died who were in school?  One death is one too many of course, but if it has taken ten whole years for a total of five deaths (with at least some with dubious or erroneous HE categorisation), when sixty thousand children are being home-educated, the facts speak for themselves.  The fact is, that rates of child abuse are significantly lower in home-educated children. But of course this inconvenient fact was kept out of the programme and avoided by Ms Longfield – and she is well aware of it because (1) she just is, in her role, and (2) I Tweeted the evidence* to her about a week before the programme.

An awful case of a Welsh boy who lived with his parents in a very isolated rural part of Wales, who didn’t go to school (but this may not mean he was HE either) and who starved to death, was shown.  This is the case that Gladys Rose White was speaking of at the beginning, that gave her harrowing images of bleeding gums and teeth coming out.  But as awful and tragic this event was, it didn’t happen because he was HE. It happened because his parents neglected him and not sending him to school was part of that. This very rare tragedy, even if it could be included as a HE family, still doesn’t change the fact that significantly less HE children are abused or neglected than those at school. This is another deliberately misleading case being used.

So this case was used as an illustration, that LAs simply not knowing, meant there could be thousands more cases like that. The evidence absolutely does not bear this out so lies and hysteria based on those lies, are being used to make people scared enough into agreeing that HE needs to be heavily overseen and controlled.  Very few families live so remotely as this poor Welsh child that died, even fewer who are home-educating.  What’s even worse, is when children attending school are dying right under the noses of so many professionals, even sometimes when there are additional professionals such as social workers seeing the family. And this is happening.  Where were those serious case reviews Dispatches? It’s clear that alleged fears of child abuse are being used to create a reason to monitor home-educators.

Dispatches then went on to the subject of illegal schools (which by the way aren’t HE so why would they be used). They used an example, where the set-up may not in fact have been intentionally run as a school, the people using an office space to provide tuition for HE children, stated that they found the law confusing and had inadvertently gone over the amount of hours, which made them classified as a school.  They had been to court and the finding was that they had run an illegal school. So Anne Longfield went along with Ofsted inspectors unannounced to catch them out.  The court had clarified that more than 25 hours a week is deemed a school. However, what Anne Longfield seemed not to understand (and the constant lack of awareness about HE means she was never going to provide an accurate portrayal of it), is that HE doesn’t only take place in the home!  It seems that Anne is subject to the same ignorance about HE as the general public are, taking the term “home” very literally. HE children as before stated learn not only in the home but out in the community, meeting other HE families and sometimes having private tuition elsewhere, going to clubs, libraries etc and sharing resources in other HE homes.  So this again was entirely misleading and it was notable that the court findings had not criticised the standard of provision these people were offering.

Exams The programme then moved on to the number of HE children taking exams and Anne said that no-one knows how HE children doing academically. The latter is simply not true as the referenced articles below prove.  The former, parents can enter their children at external exam centres, but there is no requirement to inform LAs that their children are taking exams.  Also, some will be doing distance learning courses and take exams that way, so any statistics collated won’t be accurate. Yet despite this, Anne claimed that out of 11k HE children, only 263 sat exams.  This simply cannot be true and the aforementioned quoted articles, must have incorporated exam results as part of their research.  Anne referred to an ADCS HE survey from 2018, which said that only 31 LAs kept records, but HE is not their business, why would they need to document this? And in any case, a successful life is not based on exams anyway. Universities can look not only at qualifications and points but other sources of learning and education (if they couldn’t, they wouldn’t consider mature students on this basis).  Here it describes other ways HE parents can track progress: https://www.theschoolrun.com/tracking-progress-in-home-education and also says of children in school, that: “Childline has reported a 200 per cent increase year-on-year in calls from young people about exam stress“.  That can as we know, sometimes tragically lead to child suicide.

Anne told us that data outlines HE children four times as likely end up NEET (not in education, employment or training), I find this impossible to believe in view of all the research on better outcomes for HE children. I would like to see the source of this data and which children are being included. If the vast majority are SEN children then it would be far more likely that it’s their SENs resulting in this, not by virtue of being HE.  She said that “parental rights” must not come before the best interests of the child, well clearly that’s not the case as the content of this article shows – the opposite is the case and these tactics won’t convince the public otherwise once they see all the facts.

The Children’s Commissioner finishes the programme by asserting that home-educators “must be registered and be visited” and she would be writing a report to the Government stating this. Well Anne, I will be sending a copy of this article to the Government also and sharing it across social media (send it viral folks!), to counter your wholly dishonest representation of home-education.

*  And Anne, research proves that regulation does not reduce (the already low) rates of abuse/neglect of home-educated children [20]. And yet HE families are disproportionately monitored and referred to social services already, without any basis for doing so [21] because the rates of abuse by HE parents is lower than school-educated children!

“…teaching staff with responsibility for caring for children during school hours, were found to be more likely to be guilty of abusing those children, than a home educated child was found likely to be abused. Clearly, the risk of a home educated child being subject to abuse is lower than the risk of an educational professional employed in a school being found guilty of abusing a child or children in their care.”

“2014 NSPCC23 report refers specifically to home educated children being denied the right to formally express their views or participate in decision making in respect to home education. Yet no process is in place to allow schooled children to take part in the decision to send them to school or to express their views about being sent to school.”

“That perception of risk is also demonstrated to be false by the current research, which indicates that home educated children, whilst twice as likely to be referred to Social Services, are between 3.5 – 5 times less likely to have that referral lead to a CPP than are schooled children aged 5-16, and 5 – 7 times less likely than children aged 0-4 years.”

Footnote: Planet Autism wrote to the chief social worker for children, Isabelle Trowler, in May 2016 about one of the very issues raised by a featured home-educating parent – but unfortunately glossed over entirely in this programme, how special needs families are being failed by the system and falsely accused of child abuse, often fabricated and induced illness (FII) and how this traumatises families, including the children. Isabelle Trowler didn’t respond to the communication about this issue, although a DfE minion did, only to respond with generic blurb which is freely available online. Anne Longfield clearly must work closely with Isabelle Trowler as their roles by default strongly overlap. The Government has known of and ignored this issue for many years. And many of the population of home-educated children have special needs, these same families, as the Dispatches programme showed, are the same families who are being wrongly targeted with child protection investigations.

References:
 
[1] “How well do schools prepare children for their future? May 2017” (APPG on Education 2017)
[2] Poorest students in England nine times more likely to be in inadequate secondary schools, research shows (August 2018 article, based on Ofsted data obtained by the Labour party)
https://www.independent.co.uk/news/education/education-news/poor-children-schools-uk-poverty-secondary-education-state-angela-rayner-nick-gibb-a8500226.html
[3] ““Forgotten children”: Our education system is excluding, and failing, more pupils (July 2018 article based on Commons education select committee report)
https://www.newstatesman.com/politics/education/2018/07/forgotten-children-our-education-system-excluding-and-failing-more-pupils
[4] Boys left to fail at school because attempts to help them earn wrath of feminists, says ex-Ucas chief” (November 2018 article)
https://www.telegraph.co.uk/education/2018/11/16/boys-left-fail-school-attempts-help-earn-wrath-feminists-says/
[5] National Autistic Society’s “School Report” (2016)
https://network.autism.org.uk/content/report-finds-new-education-system-failing-meet-needs-autistic-children
[7] Missing special needs support ‘a national scandal’
https://www.bbc.co.uk/news/education-46400397
[8] Is Britain’s education system failing the next generation? (Organisation for Economic Cooperation and Development (OECD) December 2016 report)
http://www.if.org.uk/2016/12/23/is-britains-education-system-failing-the-next-generation/
[9] “Half of Children Worried About Returning to School After the Holidays Because of Bullying” (2018 article)
[12] Home Education Advisory Servicwww.heas.org.uk
[13] “The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice” (endorsed by DfE and Autism Education Trust)
[14] Home Education: A Successful Educational Experiment?

[15] Home Education Research http://edyourself.org/research/#icher.org
[16] “Children taught at home learn more. Youngsters of all social classes do better if they avoid school, study discovers
https://www.theguardian.com/uk/2000/aug/13/education.educationnews1
[17“How can children be traumatised just by going to school?”
https://specialneedsjungle.com/children-traumatised-just-going-school/
[18] “SEND children are being “traumatised” by not getting the help they need in schools”
https://specialneedsjungle.com/send-children-being-traumatised-by-not-getting-help-need-schools/?fbclid=IwAR3r574eNVD2cwDNR1G3-97JL26XyQKsUFoquEDbH7DM4_yd8-ZwMPCYxVQ
[19] “Rise in referrals to social services causing trauma to families, expert says”
https://www.theguardian.com/society/2016/apr/15/rise-in-referrals-social-services-trauma-families-child-protection
[20] “The Relationship Between the Degree of State Regulation of Homeschooling and the Abuse of Homeschool Children (Students)”
https://www.nheri.org/degree-of-homeschool-regulation-no-relationship-to-homeschool-child-abuse/
[21] “Home Education and the Safeguarding Myth: Analysing the Facts Behind the Rhetoric.
http://www.home-education.org.uk/articles/article-safeguarding-myth.pdf
[22] Teachers reject national curriculum as ‘not fit for purpose’ in exclusive TES/YouGov poll”
https://www.tes.com/news/teachers-reject-national-curriculum-not-fit-purpose-exclusive-tesyougov-poll
[23] WHSmith education books examples: https://www.whsmith.co.uk/dept/books-education-02×00002
[24] “The Schools that Spy on ‘Munchausen’s Mums’ – Teachers accuse them of lying about children’s autism to get attention” http://www.dailymail.co.uk/news/article2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autismattention.html

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“Anosognosia and Autism – A Real Concern”

anosognosia_lobe_capture2
Image courtesy of http://www.treatmentadvocacycenter.org

Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex.  It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder.  This means, that the brain differences in those conditions, are damage to the normal functioning of the brain.  Sometimes, the term anosognosia is used to describe denial of the diagnosis too.  I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.

There is however, a dearth of literature on anosognosia in autistics.  Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia.  So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism.  Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it.  That’s not actual anosognosia though, time usually resolves this reaction.

Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons  for them.  I believe this can  contribute to anosognosia.  My eldest autistic child seems to have true anosognosia.  Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis.  And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her.  She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story.  I thought it was fear and being an adolescent that made her refuse to believe it.  But over time, I have come to realise that it’s more than that.  When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties.  Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.

She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation.  When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues.  She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help.  When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up.  When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless.  It’s very hard parenting a child who thinks this way.

Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to.  She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope.  She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”.  Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression.  She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months.  Yet she is a very intelligent child, academically excellent with a very superior vocabulary.

So over time, I realised that her denial, is beyond being mere denial.  It’s a literal belief that she really isn’t autistic, an inability to believe it.  Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her.  I thought time would make her come to terms with it, but it hasn’t.  If any support offered has been autism-related, she refused it.  She has refused social opportunities that would help expand her horizons, yet is upset at having no social life.  As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is.  She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’.  She misunderstands people a lot, she thinks people have been mean all the time.  She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.

But this worries me.  Quite a lot.  Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be.  Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood.  Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality.  Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable.  She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!).  She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.

At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity.  Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so.  And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside.  They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind.  She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected.  Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time.  High-functioning autistic females can also be masters of camouflage and masking.  And parents are elbowed out of the picture sharpish when children reach a certain age.  She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”.  So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it?  What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position?  Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources.  What happens with in situations such as DLA/PIP interviews, if they arise?  She will deny any difficulties and likely lose her DLA.

So I asked myself, do I get a professional to state on record that she has anosognosia?  Trying to foresee the implications of that causes new concerns.  On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems?  What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change?  Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen.  It’s a scary prospect.  And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them?  There are so many potential issues with this.

I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it.  Autism is an integral part of who someone is, you can’t separate it out.  If someone needs help, it’s important that they recognise that and accept help from others.  How can someone grow and problem-solve in their life if they don’t understand themselves?  We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it.  And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.

Parental Alienation – Or is it? Misrepresentation of Autistic Behaviours

Gavel

http://www.socialworktoday.com/archive/102708p26.shtmlParental Alienation Syndrome — The Parent/Child Disconnect

The above article totally ignores the potential for autism and possible resultant family dynamics in that situation. I will discuss just one scenario where this could be misused against a parent in an autism family.

Imagine if you will, a dad who for a variety of reasons does not accept his child could have autism. It could be that the mother sees the behaviours in an undiagnosed child, but the dad resists accepting the possibility. It could be that the child is diagnosed, but the dad does not accept the child’s differences or understand the condition. Some of the reasons this might occur is ego-based, fear, or even that the dad has autism himself so the child’s behaviours seem typical to him.

A quick Google will tell you that this problem is quite widespread.

I will quote some paragraphs from the above document and if you are an autism parent, you will see quickly, how dangerous this could be to you in an acrimonious separation situation.


2. Weak, Frivolous, and Absurd Rationalizations
When alienated children are questioned about the reasons for their intense hostility toward the targeted parent, the explanations offered are not of the magnitude that typically would lead a child to reject a parent. These children may complain about the parent’s eating habits, food preparation, or appearance.

That could have been written about an autistic child. What seems very minor or inconsequential to a neurotypical person can be hugely magnified to an autistic one. Autistics also focus on the details, so they will notice lots of little things and it will look to others like they are being disproportionate. A disgruntled father, who is lashing out at the mother and looking for blame, will of course cite this as a sign of unreasonableness and insist the mother has turned the child against them over a period of time or raised the child wrongly.

5. Absence of Guilt About the Treatment of the Targeted Parent
Alienated children typically appear rude, ungrateful, spiteful, and cold toward the targeted parent, and they appear to be impervious to feelings of guilt about their harsh treatment. Gratitude for gifts, favors, or child support provided by the targeted parent is nonexistent. Children with parental alienation syndrome will try to get whatever they can from that parent, declaring that it is owed to them.

Lowered empathy coupled with anxiety and stress can override what may seem logical reactions. An autistic child does not mean to be rude, but can be focused on those aforementioned minor details and not remember to thank, can be blunt and may focus on the negatives because the way the autistic mind thinks, there is no need to mention the positives as they don’t need resolving. Literalness can also mean that an autistic child views the role of the parent as a job, so that they must do certain things to be performing it correctly – that doesn’t mean they don’t love their parent. Stress can give rise to negative comments which the child may not perceive as mean due to low empathy. Autistic children can release some stress through complaining.

8. Rejection of Extended Family
Finally, the hatred of the targeted parent spreads to his or her extended family. Not only is the targeted parent denigrated, despised, and avoided but so are his or her extended family. Formerly beloved grandparents, aunts, uncles, and cousins are suddenly and completely avoided and rejected.

An autistic child may feel stressed at spending time with extended family members, especially if they don’t see them regularly, because it upsets their routine. Additionally, if those family members also don’t understand autism or don’t accept the child has autism, they will not be bearing in mind the specific needs of the child when they spend time with them, which can make the child feel uncertain and stressed. They are used to spending time with a mother that intuits their needs and is used to their whims. It can be a terrifying place to be plonked with family members who don’t respond the same way. If an autistic child has low danger awareness and the extended family members do not supervise accordingly, that can be a sticking point between the mother and the relatives, based on a very valid concern. That does not mean the parent is being obstructive or turning the child against relatives and if the father or his relatives don’t understand autism, it’s all too easy to assume the worst about the mother when she is entirely innocent.

If the child resists being taken out alone by the father, he might make assumptions that the mother is poisoning the child’s mind against him. But there are all sorts of reasons why the autistic child may resist spending time alone with the father that are nothing to do with the mother.

Let’s say the dad is one of those who is a real joker, doesn’t take anything seriously and he does not understand autism at all. He insists that if the child wails in protest at his jokes which are taken literally, that the child is exaggerating. If they have what seem to him to be extreme reactions, they are not exaggerating, it is their real experience, because that is how an autistic person processes it. Because of this, he stresses the child and they will only go somewhere with him if the mother goes too – which isn’t possible in the situation, so the child refuses to go. The father blames the mother for this.

Autistic children also can have inappropriate laughter when they are stressed, it’s a form of release of stress, so superficially it appears to the dad that the child is having a great time. But that doesn’t necessarily mean they are enjoying a situation. The child may return home very upset and having masked their distress whilst spending time with dad, then throws themselves at the mother complaining of a long list of upsets and say they will not go anywhere with the father again.

If the parents end up in a court situation, especially where social services are involved, the mother may be wrongfully demonised, accused of emotional harm and parental alienation and in a worst case scenario custody could be given to the father. Imagine giving custody to a father who rejects their child’s condition and does not know how to provide for the child’s needs? Any ensuing behavioural problems in the child resulting from this scenario would likely also be blamed on the mother, it would be claimed she had caused emotional damage and the child needed therapy to recover. In fact, in this situation it would be the father who needed therapy to overcome his rejection of the child’s condition and his wrongful anger against the mother that will only interfere with father-child bonding and prevent him being a good father.

The saddest irony, is that the very thing the father in this situation is falsely accusing the mother of, is the very thing that he ends up causing.

It is high time the differences of autism families are understood by all those who are involved with families, to ensure there is no misrepresentation of autism, no wrongful blame and no unjust and harmful interventions, devastating lives.

Courts of Protection, MSBP/FII and Autism

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

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

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

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


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

So, this is the mother deemed neglectful and abusive:

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

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

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

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

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

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

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

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

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

His honour states:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Final note – his honour says:

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

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

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

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

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

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

It’s interesting that the following article states:

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

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

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

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

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

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

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

Speak Out

The Injustice of State Abuse

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

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

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

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

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

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

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

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

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

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

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

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

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

CAMHS and autism: A story in pictures…

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

THE CLAIM…

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

 

AND THE REALITY…

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

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

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

Your Job

Autism Unawareness

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

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

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

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

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

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

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

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

When Services Go Bad…Autism Misunderstood

autism ignoranceThe word “service”, conjures up images of people bending over backwards to help, people asking what it is you need, what they can do for you.  And yet, across the UK (and no doubt other countries), autism families are coming up against obstruction, tardiness, lack of awareness and misunderstanding from these services.  The National Autistic Society has produced reports on how parents complain of the failings of CAMHS to support and understand their autistic children (click here to access their “You Need to Know” report).  Largely, this is a result of clinical staff lacking training in autism and the day-to-day issues it raises and comparing of autistic children to neurotypical children (although there also seems to be an arrogance and refusal to accept their lack of expertise too).  This doesn’t work.  A neurotypical child may have anxiety and depression because of particular triggers or events, but an autistic child likely has it because of the struggle to exist in a world that fails to understand, provide adjustments and support them.  What remedies work for a neurotypical child may not for an autistic child.

Then there are social services.  The name seems almost a misnomer, a Google will bring up multiple horror stories about people’s experiences of them, and this likely intensifies with autism families, because social services staff – even in supposedly specialist disability social services departments, just don’t get the training and have a mindset that doesn’t recognise or support autism and it’s challenges.  It’s about ticking boxes, a culture of looking for blame and cause – often directed at parents, and judging an autistic child (never mind an autistic parent) by neurotypical standards.  They fail to understand not only the autistic character, but the family dynamics and needs.  This issue has resulted in organisations being started up purely to address this problem, by determined and dedicated parents.  One such website is Parents Protecting Children run by Jan Loxley-Blount.  Autistic children (and their families) do need protecting, but what professionals seem to forget, is that their ham-fisted and uneducated dealings can cause the very thing they are supposedly protecting against and which they increasingly seem to be falsely accusing parents of – emotional harm.  An amazing blog by Sue Gerrard (hat off to Sue) goes into great detail about the problems with professional approaches in misunderstanding autism.  Sue is not only a parent to an autistic child but she is trained as a biologist, psychologist and primary teacher and I am a huge fan of her blog.  I recently attended a safeguarding workshop and was horrified at the attitude of one professional attending, who stated that parents were asking for autism assessment of their children just to get state benefits.  The suspicion and nastiness in the comment was vile.  You can’t ever be on a level playing field if they start out with that viewpoint.  The excellently researched scenario acted out at the workshop, showed a family struggling against obstructive services, and who were misunderstood at every turn.  A child suffered an accident, which it was never explained the specifics of, and which the autistic child spoke plainly, without embellishment of, leading to professional assumptions being made without checking – which were automatically directed against the parents and resulted in the parents being prevented from taking their children home.  Not once, shamefully, did a single professional in the workshop identify that the assumption was made to blame the parents, or that in this scenario it was the professionals that the children actually needed protecting from.  Does this sound like a service?  In my view social services needs entirely overhauling and transparency and accountability for their actions needs putting in place, that’s just for any family but for autism families a whole layer of specific training needs to be added.

Even schools, who surely should have good understanding of autism – not only in supporting autistic children struggling in mainstream education but also in assisting in the identification of potentially autistic children.  Some parents will never have heard of autism or have the vaguest ideas of it, with stereotypical views.  So faced with a child with challenging behaviour, especially where they are masking their behaviour at school and offloading it onto parents at home, they may need support in recognising the validity of getting their child assessed – teachers have a role to play.

In the UK, the zero autism awareness of most GPs is now recognised as such a problem, that finally the Department of Health recognised and are addressing the problem.  But these things take time, and in the meantime, parents going to their GPs for help are getting fobbed off, misled and failed by GPs, who are supposed to be referring a child for autism assessment.  When it comes to adults approaching GPs, most of them aren’t even aware of the Autism Act 2009 and the Autism Strategy, making it a legal right for an adult with ASC concerns to get referred for assessment.  So you have to ask, how many undiagnosed children and adults are struggling along without a diagnosis.  My younger child was diagnosed pretty straightforwardly (albeit with a lot of pushing due to waiting lists) but my eldest child suffered the incompetence of our local CAMHS who failed to identify her high-functioning presentation and we had to go for a second opinion.  She has Asperger’s, but the second clinicians did not do a new assessment, they relied on the flawed information from CAMHS and did no clinical testing, so she came out with a diagnosis of PDD-Other (for which no clinical description exists anywhere!) which does not recognise the severity of her traits and is not the correct diagnosis.  Who knows if this will cause her to receive less support than she should do, already one professional has refused to believe it is a diagnosis of autism.  As for myself, state diagnostic services failed me too and I was diagnosed privately (and much more thoroughly than via state assessment).

I sometimes wish people could get inside my brain, it’s like screaming at a wall trying to get understanding and awareness from others, but when it’s professionals, you kind of assume the awareness and understanding will already be there.  They are qualified and trained right?  Wrong!  Until the Government makes a stand, ensures that all relevant professionals receive a minimum amount of autism training, clinicians are really tuned in to the nature of the spectrum, clinical staff keep abreast of research and developments, and the state puts out public service adverts on radio and TV to raise public awareness and spends some money on addressing this issue, autistic people and their families will continue to face brick walls – which ironically in the end means they are likely to cost these services more.  And don’t forget, those autistic children are the autistic adults of tomorrow.  I won’t even go into adult autism services, as they are virtually non-existent.  Quote of the day:

“Without intervention today, the cost of care for adults with autism will be significantly greater and the burden will no longer lie with the parents, but on our entire society.”

~ Jenny McCarthy

Edited to add 15.5.16: new Planet Autism web page about the false accusations and discrimination against autism families (the scale of the issue is huge): http://evolutian.wix.com/planetautism#!discrimination-against-autism-families/n103x