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.

State Kidnapping of the Children of Autistic Mothers

kidnapped child What can be done, about the utterly shocking situation of decent autistic mothers (some who were undiagnosed at the time), intelligent and caring women who love their children, having them ripped away on the basis of false accusations, misrepresentation and/or misunderstanding of autism, discrimination – and who were in no way neglectful or abusive to their children? How can this be allowed? What sort of society are we to stand by and watch while it happens?

I have encountered 3-4 autistic mothers online just in the last year or so, who have had 1-4 children each stolen this way, as a result of accusations of MSBP/FII.  All the women have come across as caring, warm-hearted and desperately loving their children and wanting them back.  I have contacts who know of far more cases through almost daily pleas for help, they are just the tip of the iceberg.  Imagine all those out there who don’t know where to turn and never contact anyone for help?

Genuine MSBP/FII cases are very rare.  It is not a condition in itself, it is a set of behaviours caused by mental illness, or in some cases personality disorder, making the parent/carer either induce or invent conditions in their child for attention.  Approximately to ¾ of general child protection referrals turn out to be unwarranted.  Imagine how much rarer it is for an MSBP/FII accusation to be true.  In this presentation, Dr Helen Hayward-Brown (medical anthropologist) goes through the relevant points showing how wrongly it is used against parents and how they don’t stand a chance against such accusations.  She wrote a 1999 paper in which she explains extremely thoroughly, how this “diagnosis” is misused and for the reasons it is currently being misused, is almost impossible to prove innocence of, citing many valid points which are overlooked by the authorities blindly accepting it as a truth.  Many of the supposed “traits” of it, are the traits any concerned parent would show in a medical situation with their child.  But autistic mothers being misunderstood, are very vulnerable to these false accusations.

Autism is one of a variety of conditions, which can be either misunderstood or unrecognised by doctors and when parents persist in trying to get their child’s difficulties recognised or supported, sometimes professionals retaliate with false accusations of MSBP/FII.  It does seem to be becoming increasingly common for professionals, protecting resources, irritated with parents seeking support for their child, or parents disagreeing with professionals, to be instigators of revenge accusations.  Professionals stick together, one makes an accusation and it is immediately taken as valid by all the others.  Something documented, however false, follows someone round from report to report, where they all quote the original and one another, as gospel ~ either through confirmation bias, or collusion.

Autistic traits in a parent, mean they may communicate in an atypical way, not show the deference professionals expect and are vulnerable to being misunderstood.  Discrimination makes people ill – the NHS admits it here.  If the child is autistic, especially if undiagnosed, professionals can mistake their autism traits as signs of abuse or neglect.

When an autistic parent is in court, especially if they are undiagnosed, they face a system which despite the law, does not proactively provide reasonable adjustments and is a bed of ignorance and lack of awareness of autism by those in power.  This leaves the parent highly vulnerable to being misinterpreted and wrongly judged.

Some autistic parents are wrongly accused of or diagnosed with, having personality disorders.  I have compiled a list of autistic traits which can be mistaken for grandiosity or narcissism (a particular Aspie mum lost her children by use of such false accusations):

  • outspokenness/bluntness because people with Asperger’s are very honest often due to not processing likely impact;
  • lack of recognising ‘status’ in people of authority/professionals or lack of understanding of social hierarchies (hence talking to them at an equal level and not showing the deference that NTs might);
  • difficulties in voice modulation (speaking either too quietly or too loudly) and loud volume of speech can be mistaken for domineering attitude;
  • intense research and absorbing of facts which gives a “mini professor” appearance that can be mistaken for a “know-it-all” by others;
  • difficulties in interpreting when it’s turn to speak, giving wrong impression of interruption purposely and in ignorance of the opinions of others;
  • monologuing, mistaken as opinionated or selfish;
  • difficulties focusing when in conversation with others, so needing to ‘get out’ everything has to say in one go, mistaken for being overbearing;
  • difficulties knowing when others are bored or unwilling to listen, can be mistaken for arrogance or selfishness.

There may be some autistic parents (as with non-autistic ones) who need parenting courses or support to adequately parent, but that does not mean that autistic person cannot be a good parent!  There are plenty of amazing autistic parents out there!

The trauma to the child and parents from removing children are massive and lifelong.  That damage cannot be undone.  Your DNA carries forward trauma to future generations.  So what such state abuse does, is damage those they traumatise and their future generations of children too.  Considering also that the care system has such appalling outcomes for children, considering how many foster and adoptive parents abuse children (blood is thicker than water) too, how can they excuse this?

And added to that, as autistic parents often have autistic children, neurodiverse children that have not been diagnosed, are handed to new families on the pretext that their challenging behaviour is caused by abuse or neglect.  How many autistic children are wrongly diagnosed with attachment disorder?  A 2014 Parliamentary Inquiry into UK CAMHS, found that particular groups of children were being failed, one of these groups was adopted children.  Wouldn’t it be interesting to find out, how many supposedly suffering attachment disorder, actually had autism or ADHD?  So some supposedly abused or neglected children were removed wrongfully and even where it was known they were autistic and they were removed because the parents couldn’t cope, services clearly failed to provide the right support to enable them to keep their children.  Only this week, a story has surfaced about a little boy who has been taken from parents with learning disabilities (the mother was said to have autistic traits), who were admittedly devoted and all they needed was the right support to parent adequately.  The little boy’s behaviour was blamed on their lack of boundaries, but with both parents learning disabled and one potentially autistic, what are the odds his behaviour was in fact due to autism?

Autistic children do not necessarily have the same needs as non-autistic children either.  A social worker may for instance believe the parent is not socialising them enough, but many autistic children have meltdowns in the company of peers due to sensory issues, or do not want to play with peers who ridicule them, or they prefer playing alone.  So social workers are judging parents by neurotypical standards, and autism families will therefore always be found lacking according to the tick-boxes.

Social workers are not taking up the autism training they are required to according to the Autism Act 2009.  So more parents will continue to suffer misrepresentation and discrimination.  This is appalling and cannot continue.  Things have to change and soon.  With adoption being (ridiculously) irreversible in the UK (shockingly “public policy” ~ AKA saving face, is considered more important than destroying families lives), it’s too late for many.

If you consider how ordinary parents can fall victim to wrongful child protection interventions, imagine how much worse it is if you have a condition they are ignorant about?

Added to which, the DoH statutory guidance regarding autistic adults is so wishy-washy, authorities can get away without doing very much at all to diagnose and support autistic adults.  The DoH Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy applies to all local authorities, NHS bodies and NHS Foundation Trusts and replaces the 2010 statutory guidance. It relates to England only.  Shockingly, authorities’ provision of a diagnostic pathway, adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, no authority will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and authorities are trying to save money?

So the issue of autistic parents being unsupported, misunderstood, misrepresented and discriminated against will continue, unless the Government does something to change it.  The Government has to listen to it’s people, so we must speak out, and speak out loud!

Edited 29.5.16: Preliminary research research results about the discrimination against autistic mothers here: https://insar.confex.com/insar/2016/webprogram/Paper22166.html  “Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.”

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