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 “tightly regulated and supervised” was given as a reason to believe that 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, 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 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 cover 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 appointment, 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 the state services are so poor, failing to diagnose many children’s difficulties or offer the right type of support, or simply leaving children on interminable waiting lists, 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 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 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 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 angle 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.  If this is the sort of reporting that Channel 4 Dispatches does, then I will never believe everything another of their episodes says.

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 adequate, otherwise Anne would have wasted no time in proclaiming she was failing her son.

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 school. 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 cases where parents might not be providing an adequate provision 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 delays their 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 struggle 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 (where it is by 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 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 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 resources. 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 asked Anne Longfield whether she had told social services she was visiting. She made a dark joke about “the Children’s Commissioner – or child snatcher” when Anne wasn’t around. What’s happening to 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 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 categorisation as HE), 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 onto 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 cannot be true and the aforementioned 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, life is not all 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“.

Ann 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 what 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 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!

“…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 partyhttps://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 Service www.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) http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf
[14] Home Education: A Successful Educational Experiment?” https://www.powerwood.org.uk/results-home-education/

[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”
[19] “Rise in referrals to social services causing trauma to families, expert says”
[20] “The Relationship Between the Degree of State Regulation of Homeschooling and the Abuse of Homeschool Children (Students)”

[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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“Do people tell you you’re a good listener?” Autistic Versions

Good Listener There is a question on an autism screening questionnaire, I can’t recall which one, but a quick Google tells me it’s not the AQ50 at least. It’s something along the lines of the title of this blog post and this post is triggered by a recent passing comment to me, about me being a good listener that reminded me of the question.  This is one of those “it’s not what it looks like on the tin” explanations, based on the fact that autistics often do what looks like the same thing as NTs (and may in some cases be the same thing) but for different reasons than the NT believes and not necessarily for the same reason as an NT would.

That doesn’t mean the outcome can’t be as positive however (in some cases may be better, at least from the autistic perspective if it’s a solution for themselves). Autistics tend to be logical and when faced with a problem, to seek a solution. I’m far from being an expert on NTs, but I gather that a ‘good listener’ for an NT, is someone who seems sympathetic and sits quietly making sympathetic-sounding expressions. To be honest, if someone I didn’t know well was crying or panicking about something that had happened to them, I would feel a bit at a loss.  Probably because I’m not sure what response they expect and other peoples’ emotions are tricky.  I would probably also feel a bit bored if they cried for an extended period, having offered solutions that came to mind and this still not having calmed the person down.

But a couple of times, I’ve been told I was a good listener after I offered practical solutions and suggestions. It surprised me, because that’s literally all it was and it was interpreted as me having been something I thought I wasn’t necessarily great at.

I think, to sit patiently while someone pours their problems out isn’t necessarily a good listener, it might be a patient thing to do, but what else can you do? They have no idea what’s going through your mind (which could be “enough already” or something similar!) and maybe all they want is a physical body there to talk/cry at and it could be almost anybody. But to me, the definition of a good listener would be someone that had oodles of sympathy, knew what to say when, had hugs in the right places and how to build the person’s self-esteem up. I’m happy for an NT to comment below if I’ve got that wrong.

I’m sure NTs appreciate solutions the same way autistic people do, but I just thought they wanted more. So I’m intrigued as to how an NT perceives being offered practical solutions, equating to being a good listener.  Is it the fact that you have processed their problem in detail, to them meaning you must have taken the trouble to listen well?  Is it the fact that they didn’t know what to do and the fact that you gave some viable solutions, meaning they think you must really personally care about their predicament?  I don’t have to care per se about the person’s predicament, although I am a sympathetic person and if I have been through the same or a similar experience myself that makes it a lot easier to understand how it is for them.  I don’t like to see people suffer either.  I just don’t really understand how offering solutions,  in a literal sense means you are a good listener.

For what it’s worth I scored very low on the empathy quotient when I was tested, which makes it all the more confusing.

On a tongue-in-cheek note, autistic people apparently hear more than NTs: https://theconversation.com/autistic-people-can-hear-more-than-most-which-can-be-a-strength-and-a-challenge-77039

Although as we know, hearing doesn’t always equate with listening! Answers on a postcard please…

Blah, blah, blah

Jeremy ‘witch Hunt’ and the mother blame

Yet more of the mother blame levelled against autism families. And it doesn’t stop when they have killed your child, they have no shame, as Connor Sparrowhawk’s mother has tragically discovered.

mydaftlife

Was reminded all week about the terrible mother blame that went on across LB’s inquest which was held a year ago. Just a few tasters:

5

1

1

Unspeakably awful. Again my brain weeps This is the NHS…

Sadly, blaming us has been a consistent theme since LB died. Sloven have sent extraordinary briefing reports to all and sundry blaming us for hacking into staff twitter accounts and trolling. Oxfordshire County did a corporate number with their sordid secret review of me, while one of their commissioners wrote a terrible letter tearing me to shreds (I’ve never met the woman who is apparently deeply christian).

Jeremy Hunt seems to have joined the blame brigade now. He was interviewed by David Fenton in a bizarre piece on BBC South last night. Between them, pushing a ‘witch hunt’ version of events. Fenton even described how Sloven staff are too scared to go out with their…

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“Public Body Behavioural Policies Discriminate Against Autistics”

discriminatory policies Let me start by saying, that I believe the policies in question, are being widely misused against any complainant that public bodies want to fob-off.  This is so, because in the UK there is a cover-up culture among the public sector and arbitrary labelling is used to deflect complainants, they can simply claim that a complainant’s behaviour is unreasonable, or vexatious.  And once labelled so, it’s on record and gives them carte blanche to ignore you or treat you a particular way.  They also disseminate this labelling of you to other bodies.

In law, being vexatious means…

“denoting an action or the bringer of an action that is brought without sufficient grounds for winning, purely to cause annoyance to the defendant.”

But in general terms…

“causing or tending to cause annoyance, frustration, or worry.”

Well anyone can say anything annoys them and what annoys one person won’t annoy another.  There are many variables that affect such an emotion.  This terminology is in widespread misuse against valid complainants, who are shocked and outraged at wrongful outcomes when they submit complaints.  Where the complaint handler opines what evidence means or shows, distorts events and reaches an unjust conclusion.  The NHS is a prime example of how badly public bodies are handing complaints, how there is a culture of denying, defending, diminishing, delaying and dismissing complainants.  So of course, any reasonable person will persist for at least some time, in seeking justice and remedy if the outcome of a complaint wasn’t what it should be, unless they are too exhausted with it all.  Sometimes, they don’t have a choice but to persist however, for instance if it is detrimentally affecting their health care.  And what about the emotional state of the complainant who has been poorly treated!  Annoyed is likely to be an understatement in that regard.

Specific policies have sprung up from public bodies on how to deal with vexatious complainants.  Google “vexatious complainant” and you will see hundreds of public body policies for such alleged complainants.  As an example, here is the Local Government Ombudsman’s (LGO):

This guidance covers ‘unreasonable complainant behaviour’, which may include one or two isolated incidents, as well as ‘unreasonably persistent behaviour”

“Examples of Unreasonable Actions and Behaviour”
(a relevant selection from their list)
  • Introducing trivial or irrelevant new information at a later stage.

  • Adopting a ‘scatter gun’ approach: pursuing parallel complaints on the same issue with various organisations.

  • Making excessive demands on the time and resources of staff with lengthy phone calls, emails to numerous council staff, or detailed letters every few days, and expecting immediate responses.

  • Refusing to accept the decision; repeatedly arguing points with no new evidence.

Autistics usually have a very strong need for justice.  And often tending to research their options, as well as being rule-bound, autistics will perhaps be more inclined to utilise complaints procedures in the first place – that’s what they are there for isn’t it? They also frequently suffer processing delays and certain things might not occur to them at the time, they may have a delayed realisation.  They are also not infrequently verbose in communication, because a trait of the condition means paying attention to detail.  So the above descriptions of behaviour that is purportedly vexatious, are exceedingly unfair on and discriminatory towards autistics, who may submit complaint information and evidence in a broken and detailed manner and who may persist longer than others in seeking justice.

An autistic won’t necessarily know or accept that they are ‘flogging a dead horse’.  And considering the pass the parcel games between regulatory bodies et al, if one organisation is not listening it would be logical for an autistic to approach another.  In 2014 the BBC reported that there “are more than 70 organisations are involved in dealing with complaints about the NHS and social care” which is confusing for anyone, but probably even more so for an autistic, who might therefore submit their complaint to any that seems relevant, being literal an’ all. Let’s be clear, we are not talking about frivolous complaints, we are talking about valid complaints, so they really aren’t being unreasonable in any way, they are doing the right thing in their own communication-style.  The injustice of a wrongful outcome may feel so monumental to an autistic that they use their typically logical approach, in going back to the body repeatedly, to explain why it was wrong, to get them to understand.  And their communication-style in doing so, is being criticised.

All the body has to do to get rid of them is to label them vexatious and unreasonable, which they can decide at a whim if they don’t like someone challenging their decision ~ and cut-off communication.

These policies were supposedly written to help bodies deal with frivolous complainants that really don’t behave reasonably and don’t have valid complaints, but in reality they are simply being misused and were most likely written as part of the whitewash culture that exists among public bodies.  Probably so many people did not want to give up when faced with a blatantly wrong decision, that they had to find a way to manage these people away quickly.  How can a different behaviour-style or communication approach be classed as unreasonable, when it is a natural consequence of a neurology that constitutes a disability in law?  It can’t is the short answer.

The trouble is therefore two-fold, misuse of policies for starters, but the main point of this post is that the policies themselves are discriminatory towards autistics.  And may be being used far more towards autistics, than others.

And it’s against the law!

https://www.citizensadvice.org.uk/law-and-courts/discrimination/what-are-the-different-types-of-discrimination/indirect-discrimination/

“What’s indirect discrimination?

The law which says you mustn’t be discriminated against is called the Equality Act 2010. Discrimination which is against the Equality Act is unlawful. This means you can take action in the civil courts.

Indirect discrimination is when there’s a practice, policy or rule which applies to everyone in the same way, but it has a worse effect on some people than others. The Equality Act says it puts you at a particular disadvantage.”

The behaviours they list in these policies arise directly out of the protected characteristics of autism spectrum disorder.  ASD has communication deficits, but it’s more than that, our neurology is different, we process differently and our social experience and understanding is different.

Would they have a policy about someone in a wheelchair behaving a certain way because they couldn’t walk?  Or a blind person?  Of course not.

Therefore it is apparent that such behavioural policies are unlawful and wide open to challenge in a court of law.

Public bodies be warned!

 

days numbered

We can’t help if he won’t engage…

I would like to turn the premise of this reblogged post around, I agree with every single thing this blog post has said. But I think it’s the CAMHS practitioners (et al) that are not engaging! They are clueless and I think in many cases it’s more than learned helplessness, I think it’s that they couldn’t give a crap. They just want to parrot what they have learned from training and manuals, which is clearly inadequate as it’s theoretical and doesn’t take real people into account, their individual personalities, circumstances and what works for them. Ironically people with ASD are supposed to be rigid but I would say CAMHS staff are way more rigid, perhaps they have an autistic collective attitude. Inability to perceive what others need and refusal to deviate from their preferred modus operandi. For children with ASD and most especially PDA, going to CAMHS appointments can be almost impossible. Or they manage to get there but find that the person they are faced with doesn’t have the competence to help them or persist in working with them in a way that’s right for them. It’s a complete failure in duty of care to discharge a child from the service because they are struggling to engage.

Psychologists, psychiatrists and therapists should have the will to see that person as an individual and put down the rule book and keep going until they are successful. They should be flexible enough to provide home visits or meet at a place that the child feels is neutral. Sometimes autistic children don’t like the way the building looks or feels. CAMHS staff should also be prepared to change to a different practitioner when the child has a personal aversion to them, whether it’s the way they look, speak or smell. CAMHS should be prepared to offer female staff to female children, because many females feel intimidated or uncomfortable with male practitioners. It’s appalling what a failure CAMHS are, yes there are isolated successes where good practice has been evident, but as an entity CAMHS is the worst and fails so many children. Considering 1 in 10 children who use CAMHS are autistic, it’s beyond the pale that they get away with it. 4 years ago the Parliamentary inquiry into CAMHS reports on widespread failings, since then there have been NAS reports etc. and widespread media articles about mental health services failing children with mental ill-health. Why has nothing changed all this time later?!

“CAMHS and autism: A story in pictures…”
https://planetautismblog.wordpress.com/2014/06/23/camhs-and-autism-a-story-in-pictures/

“CAMHS and Autism – A Story in Pictures” Episode 2”
https://planetautismblog.wordpress.com/2017/02/27/camhs-and-autism-a-story-in-pictures-episode-2/

It Must Be Mum

What does that really mean?

It means that if you can fit into the one-size-fits-all service that was designed for neurotypical people with an ordinary upbringing and a lifestyle that means you can drop everything and travel to a destination of our choice…

Then, and only then, will we consider you engaged enough to help you.

To everyone else, well, you should have engaged.

That is, of course, only the first step to satisfying the rules of engagement.  The next step is that you must interact with us in a way that we would like you to.  In a way that we can understand and relate to.  In a way that fits our rigid models and frameworks that have been designed around the needs of people like us.  That you will be able to cooperate and receive help in a way that suits our narrow outlook and ‘one-size-fits-all’ service.

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My PIP assessment

Plain old common sense here. The Government does love to waste public money.

Ability Access

Having seen both sides of the coin, I can tell you now with years of experience behind me that PIP assessment are not worth the paper they are written on.

After having worked in Adult Social Care and completed thousands of Community Care Assessments under the Community Care Act for eight years, I don’t mind saying that I am an expert in carrying out home assessments, but my PIP assessment was just a joke. I could have been doing an interview for McDonalds and still got the same outcome.

It started off as normal, someone arranging a home visit, they then came around and I sat on the sofa and explained my situation, there was no physical examination, it was just me telling them my story, for all they know I could have made the whole thing up and still be assigned the higher level of PIP. In actual fact…

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“Autism: Perceiving Maturity”

Maturity I have noticed how autistics can mistakenly be perceived by others as “mature”, despite the fact that they are almost always chronologically older, than their actual emotional maturity and awareness and until they have been around longer than others, often not street-wise and are likely to struggle to understand things their neurotypical peers find instinctive.  Maturity means experience in life, learning from those experiences, gaining wisdom from those experiences and presenting a somewhat “sensible” face to the world and more than might be expected for your age.

Autistics often hold back when in social situations, they may struggle to know what to say or when to say it, or have plenty to say a-la-monologue, but be scared to start, having had adverse reactions in the past. They may have social phobia, or be shy.  They are very likely to behave atypically, is the bottom line.  Many, especially females, will attempt to mimic peers to “fit in”, but with something being slightly ‘off’.  Many autistics have a strong moral compass, or a phobia of everyday things, or a confusion over why other people behave and communicate the way they do.  So the autistic is likely to be reserved, to hold back.  This can present an image of seriousness, they may also be studious which will add to this ~ a geeky type.  To others, this comes across as “mature”.  A teenage autistic girl for instance, is unlikely to be gossiping (even if she makes a brave effort to join in, because autistics usually struggle with small talk and don’t see the point in talking about what others are doing salaciously), talking about parties and boyfriends or plastered in make-up and rolling her skirt up so high that it barely covers her underwear.  Not unless she has taken mimicking to the extreme anyway.  This will stand her out from neurotypical peers.  The absence of what are seen as the “typical” behaviours of peers, makes the autistic appear sensible and mature.

It’s frustrating that neurotypical observers make such assumptions about autistics.  I always say, autistics might do (or appear to) the same things as neurotypicals, but for very different reasons.  Autistics struggle to predict and usually take others at face value.  Whereas neurotypicals seem to have a radar for judging what is likely to happen and to analyse the words and actions of others.  Trouble is, this means they project ~ and this rarely works on an autistic!

So this reminds me again, how little autism awareness there is.  Autistics struggle to survive in a largely neurotypical world, we try to learn what neurotypicals mean by what they say and do.  But neurotypicals seem to think they’ve got the t-shirt already and apply their belief-system based on their way of thinking, to autistics.  Autistics are the minority, we think differently, we often behave differently.  Some have likened it to neurotypicals being Windows (for instance) and autistics being Linux ~ we are on different operating systems.

They say “never judge a book by it’s cover” but autistics are misjudged that way all the time, by the neurotypical tick-box.  This affects everything.  From schools thinking an autistic child is in no difficulty because they are masking and mimicking, to professionals wrongly judging families/parenting by the neurotypical tick-box, to every single interaction an autistic has with neurotypical people.

If I could explain to a neurotypical the way my mind works, I would.  I doubt I could though.  All I know, is that from as early as I can remember, I found others strange and wondered why they behaved the way they do and said the things they said.  I never felt I fitted in.  It’s a very deep level of difference.  So to all neurotypicals out there, if you happen to know someone is autistic, don’t ever assume ~ and if they don’t mind talking about their autism, why not ask them things to see what their perspective or reasoning is.  Even hearing the answers won’t tell you what it’s like to exist as an autistic, it will be just the tiniest sliver of their processing that won’t even amount to a clue.  But it might challenge the way you think and make the world that little bit easier for autistics.

“Autistic Imagination”

imagination What is imagination?  It’s the ability to think up scenarios, settings, possibilities and things.  Autistics are completely able to do this – yet the myth persists that autism means impaired or absent imagination. There has been a grave misunderstanding of the fact that it’s social imagination that is impaired.  Social imagination is basically the ability to empathise with others and predict their intentions.  It has nothing to do with the rich internal mind of the individual.  Social imagination deficits are of course an impairment, this deficit is what makes autistics struggle socially, in friendships, communication and keeping themselves safe.

Simply because an autistic may not display the presence of their imagination in a way that is considered “typical”, does not mean they do not possess one!  Often absence of pretend play is cited as lacking imagination and therefore an autistic trait.  But what if they are looking at it the wrong way?

When a child with autism is spinning wheels or lining toys up, who knows what is going on in their mind?  They may be displaying high intelligence and organisational skills, working out how to perfect the alignment of the row of boxes (tomorrow’s draughtsman) or simply stimming by looking at the wheels.  Hyperfocus on an interesting or pleasurable activity is not evidence of lack of imagination (whilst it may appear rigid, why is it that so many autistics are perfectionists and pay attention to detail – spending a long time doing one thing, could be viewed as a productive use of imagination).  In research, what is seen as an impairment, could be a characteristic that will be useful to that individual in their career or interests later on in life.

“Creativity and Imagination in Autism and Asperger Syndrome” (1999)

https://link.springer.com/article/10.1023/A%3A1022163403479

“Three studies are reported that address the often described impoverished creativity in autism. Using the Torrance Creativity Tests, Experiment found that children with autism and Asperger syndrome (AS) showed impairments. Experiment tested two explanations of these results: the executive dysfunction and the imagination deficit hypotheses. Results supported both hypotheses.”

“Exploring the Nature of the Imagination Deficit in Children with High Functioning Autism: A New Approach”

https://search.proquest.com/openview/2344830302873e08ea1bbfba9e052534/1?pq-origsite=gscholar&cbl=2026366&diss=y

“The thesis concludes that whilst some difficulties in imagination are evident in high functioning autism, this deficit is not absolute.”

“Autism and the Imaginative Mind”

http://www.britishacademypublications.com/view/10.5871/bacad/9780197264195.001.0001/upso-9780197264195-chapter-13

“These symptoms gave rise to the assumption that autism impairs imagination. Symptoms consistent with this view are prominent throughout the clinical and research profile of Autism Spectrum Disorders (ASD). However, some individuals diagnosed with autism exhibit excellent gifts in the field of creative imagination such as in arts, music, and poetry. Some of these personages who suffered from autism include Samuel Beckett, Albert Einstein, Andy Warhol, and Ludwig Wittgenstein.”

As the last link above shows, there is no lack of creative autistics.  Look at Temple Grandin, if she showed no imagination how could she have thought up equipment solutions to cattle handling?  Beethoven is now thought to have been autistic – how did he think up his musical compositions without a great imagination?  This parent describes the wonderful imagination of her autistic son:

“My Child With Autism’s Imaginary World Is as Vivid as the Real One”

http://www.huffingtonpost.ca/kathleen-oagrady/a-magical-thing-happened-_b_7397766.html

“It’s often said that kids with autism don’t have an imagination or, in the more nuanced books on the topic, lack “imaginary play.” I’ve never found this to be the case with any of the kids I’ve seen on the spectrum. In fact, I’d argue the reverse from my parenting perspective. I think kids on the spectrum often have such vivid powers of imagination that the “real world” has difficulty competing.”

“Autistic people are more creative than you might think”

http://theconversation.com/autistic-people-are-more-creative-than-you-might-think-46107

“Autism is commonly, if mistakenly, associated more with logical thinking than creative expression. But new research suggests we might need to rethink our views on creativity and autism.

The criteria we use to diagnose autism have long made reference to the fact that autistic imagination appears to be limited, and this trait is used as a way of detecting the condition. Yet in reality we still see many extremely creative autistic people.

This paradox led researchers at the universities of East Anglia and Stirling to study creativity and autistic traits in a large group of both autistic and non-autistic individuals.

The authors found that individuals with higher levels of autistic traits made fewer suggestions than those with lower levels of autistic traits. Surprisingly, however, the suggestions from those with higher levels of traits had greater originality. It seems that being on the autistic spectrum is associated with being able to generate suggestions that were more creative.”

So maybe autistic imagination is in fact more worthwhile and useful, than that of the average person, as it results in solutions and great artistry!

Autistics are also known for inventing neologisms, especially as children, before being forced to comply with being the same as everyone else takes over their functioning and makes them lose the characteristic.  To think up neologisms, involves plenty of imagination.  Words may be thought up based on the item or object reminding them of something, or appearing to need to be associated with a particular sound (this is where we also might overlap into the world of synaesthesia) that they want to create their own appropriate word for.

There are quite a few actors and singers on the autistic spectrum (Dan Aykroyd, Vincent D’Onofrio, Craig Nicholls, Gary Numan, Daryl Hannah, Courtney Love and Susan Boyle to name just a few) and to do those jobs you have to have creativity and imagination.

Yes, autism means deficits, struggles and difficulties – we cannot deny it is disabling.  But it must also be understood that many autistics also have skills and talents and the parts of us that are positives and benefits (or simply normal, but different) should not be misrepresented as ‘missing’ or defective.  There are enough problems with myths and stereotypes around autism, resulting in widespread discrimination as to our capabilities and capacity resulting in shocking human rights abusesIt’s time for change.

Continue reading ““Autistic Imagination””

Just imagine – if adults were treated like some of our children…

I have always said our SEN children are being used as weapons against us…great reblog.

It Must Be Mum

I’m struggling at the moment at work.  Lots of stresses, both physical and mental have been building up over time.

I have never been a bounce out of bed person but I’m finding it harder and harder to get up in the morning and leave the house to go to work.  I noticed it started that I was leaving the house later and later and sitting in car at the car-park for longer each day before I can pull myself together and put my ‘work face’ on to do my job.

It all got too much recently at work and I broke down and cried.

They were so understanding, but I knew they would be.  I trust my supervisor.  She knows what I have been through battling the SEN system for my child.  They already knew I was under stress and had put in place flexitime so if we are…

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“Having a Meltdown in my Head”

exploding head There are times when I have a meltdown in my head.  It’s hard to describe the feeling, I kind of internalise the meltdown and run it like a film in my head.  Of what I truly need to do – but can’t.  A film, running with me screaming my head off, ranting out all the words I want to yell at the situation or person.  Imagining it like an alternate universe scenario.

I am having one right now.  Wow, how can I type up a blog post and meltdown at the same time, you might wonder.  I wish I knew.  It’s a horrible feeling.  Containing this humungous explosion that really, really needs to come out.  I always was the passive autistic sub-type.  The internalising type.  There is some shit in life however, that makes it so hard to remain passive.

Like when the system is so obstructive, so resistant, so customer unfriendly and unhelpful, that just keeping an autistic child managing, just coping, becomes impossible.  There is no autism awareness.  There is no putting the wellbeing of special needs children first, no caring that the family are the ones suffering as a result.  Never mind supporting autistic parents by simply making reasonable adjustments and doing what they can to help a situation.

Inside my head, I’m crying.  I’m raging big-time.  There are a fair few ‘F words’ flying.  The average special needs parent will feel such frustration on a regular basis of course.  Imagine being autistic though and restraining a meltdown in that situation.  A meltdown is a loss of control.  Imagine masking that.  Because you know that if you allow it out, those very professionals who are obstructing and resisting complying with the law; being flexible and actually doing their job properly, would use it against you in a heartbeat.  You would be labelled as mentally unstable and aggressive, the consequences of that could of course be huge.    As a parent, my own needs and difficulties must be suppressed.

So I fight it.  I fight it with everything I have.  I try to ride this feeling of compulsion, like someone with Tourettes trying to restrain their tics.  Like a mega “premonitory urge” before the tic comes.  Imagine sitting on that.  I feel like I want to burst.  Something’s gotta give of course, so in the end, of course I will just cry.  Cry at the injustice of it all.  Cry that so-called “professionals” can be so cruel without a second thought.  Cry that I’m forced into fighting the system when it’s the last thing I want or need.  Cry that as an autistic, I can’t be myself, I have to pretend the whole time.  I have to force myself into being a robot for the sake of society and ‘the system’ and what it deems ‘acceptable’.  I’m living a lie.  But I don’t have a choice.

This mask has become so heavy, it’s almost crushing me.

heavy mask

EXCLUSIVE #Disability Discrimination means Son is removed from Home?

The discrimination against autism and EDS families has to stop! Corruption in social services and the family courts has to stop! Shocking discrimination against an autistic mother AGAIN and prevention of diagnosis of her son. For what reason has he been removed? Precisely none as far as I can see. Disgusting system. Please all reblog this and spread this story to shine a light on it. #autismstolenkids

jaynelinney

The following true tale is the introduction into what will be a series of posts regarding a seeming miscarriage of justice and potential disability discrimination; names have been changed to protect the identities of these involved. The purpose of this post is to help the family concerned achieve real justice; please share as widely as possible.

Alison is a single parent of14 year old Adam, both live with various diagnosed and pending diagnosis health disorders including Fibromyalgia and Elhers Danos; Alison is also Autistic and symptoms suggest Adam is as well.

Due to Adams health, he found it difficult to cope with school from the beginning and despite special educational needs intervention, including one to one lessons he struggled experiencing bullying which resulted in him developing depression. These experiences became worse during Adams transition from junior to senior school, so much so that in 2015, Alison began to home educate…

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“The Damaging Snowball Effect of Professionals’ Words”

snowball-rolling-downhill Sometimes you get a sense of something being up with peoples’ reactions to you, without knowing what or why.  As a special needs parent you need to deal with a host of professionals along the way, going through assessment to diagnosis, getting your child’s educational needs met and potentially, ongoing health issues.  For an autistic parent this can be a veritable minefield.

Parents want to work in partnership with professionals, they want their expertise on their child respected, they want to be listened to and respected as equals.  You’d think professionals would be willing to offer this partnership working, it’s in the best interests of the child, as well as all concerned – isn’t it?

It may be when comments are made towards you, or you read a report stating that ‘mum’ is this, that or the other’ and you feel a burning sense of injustice and confusion.  It may be that nothing is said or written up front, but you feel that things are more difficult than they should be, inexplicably.  So you do a Subject Access Request to find out why.

A parent on the autistic spectrum won’t always communicate exactly the same as a typical parent might, despite their best efforts.  There is a shocking lack of autism awareness out there among professionals, even those who who work with autistic children, have a bizarre lack of understanding of autistic parents.  This means that the parent’s normal autistic traits are being misinterpreted and misrepresented.

So when terms like ‘anxious’ pop up unexpectedly on files, written by people who have never even met you, let-alone know you, it’s beyond frustrating.  It’s actively damaging.  Because those type of words are being used against parents, to criticise their parenting and in some cases, falsely accuse them.  It can also have a direct effect on whether a child is diagnosed or not, supported or not.  Because if mum is deemed “anxious”, she is imagining problems where there are none isn’t she.  And it usually is mum who is labelled this way.

The harm caused by one professional starting the snowball, can be enormous.  Professionals not only fail to question the accuracy of other professionals (especially if it suits their own agenda), but it can become like Chinese whispers where the original word gets added to and expanded, into an ever more exaggerated version.

An autistic parent may have some ‘cluttering‘ of speech, where they speak rapidly, or they may give a very detailed explanation of their belief or rationale for something.  This is just a difference, not a problem or failing.  The problem is, when there is autism ignorance resulting in a professional misjudging these traits as signs of “anxiety”.  Especially when they are unqualified to do so.  It’s so easy to write a word down, a value judgment or personal opinion on someone, recorded for posterity.  But it is being done without any care of the potential consequences of doing so.  And it’s impossible to get it removed once it’s there.

Parenting is judged at every turn, even without you having obviously failed in any way.  You will be picked over simply by virtue of being engaged with a system you have no choice but to be, because of your special needs child.  There is something about a clique of professionals when they get together, that becomes akin to the playground.  Posher words of course, jargon thrown in there, but there is a communication style almost like a code, borne of the policies and procedures they follow.  It seems to have morphed into an hive attitude, one that leaves them feeling superior to parents, as if they are the competent ones.  Mums are just mums.

Misjudging autistic mothers as “anxious”, in fact any mothers, has it’s dark roots in misogyny, insane asylums for disobedient wives and neurotic, hysterical women attitudes of yore.  And it’s an extremely convenient tactic for professionals who don’t like mothers persisting in having their children’s needs met.

So the snowball rolls.  It grows.  Until it becomes something every professional that has their finger in the pie, uses as fact, unquestioningly.  It rolls off the tongue, we don’t want to label the child but we sure as hell will label the mother.  Just because someone is different, that makes others assume and pass judgement.  There is never any more dangerous judgement passed than when you are a parent.  Because these days there is such a horrible culture among professionals of watching parents like a hawk, for fear they are abusers or neglecters of children.  And an even more horrible one of labelling parents as an agenda for retribution.

And being labelled as having any sort of psychological issue is enough to have you accused of abuse, deemed a parenting risk.  All on the say-so of a professional who has not assessed you for “anxiety”, or even being qualified to speculate that way, but chosen to term you as “anxious” nonetheless, because they simply regurgitate a label already wrongfully recorded.

The label or opinion may have started as simply “anxious”.  It may have inexplicably grown to “highly anxious”.  Or “anxious and depressed”.  Or “anxious, depressed and not coping“.  Or even worse, “anxious and projecting that anxiety onto the children causing emotional harm”, or that old chestnut MSBP/FII.  No matter how ridiculous and untrue, these professionals are on a roll and won’t stop.  Even the “anxiety” label itself, never mind the use of it by professionals, is a snowball. Anxiety-snowball.jpg

You can write requesting the records are amended, but they won’t.  At best they will add your letter to the file and highlight it to say you disagree.  But of course that just compounds the problem, because it looks like you are disagreeing because you are “anxious and unstable”.  So your records are sullied and incorrect for eternity.  And nobody will ever take you seriously again.

It would be so much nicer and better for everyone if these professionals took their negative value judgements and used that snowball in the opposite way instead.

kindness-snowball.jpg

The negative label snowball rolls on down the hill, even if it reaches level ground, it will continue in a circle endlessly and never fully stop growing.  The sad thing is, that the snowball is an enormous barrier to your child getting their needs met.  So when those professionals rolled the snowball, they failed your vulnerable children.

Do they do it to sidetrack families away from resources?  Then they need to wake up.  Because without early intervention, the children who the “anxious” mother seeks resources for, is going to cost the system more!

snowball money

Because a rolling snowball doesn’t just catch up more snow, it catches up people ~ and those people are impacted, real lives are affected.  And that’s on the heads of professionals.  Is that a mark they want to leave on the world..?

Worrying Perils for ASD-PDA Parents: the “Perfect Storm” for misunderstanding

Lying and Pinochio.jpg This is a very hard post to write, for various reasons.  There are some in the autism community who feel very strongly about autism parents accepting all autistic behaviours and that parents should not speak negatively about them.  Being autistic myself, I see both sides and I don’t like seeing autism ‘martyrs’ who humiliate their children online with real names, videos and photographs of their child’s difficult moments and speak constantly of the negatives as if there are no positives, purely to obtain attention/sympathy.  But we have to face facts, being an autism parent is extremely hard, especially if your child has an ASD sub-type such as pathological demand avoidance (PDA) and/or if there is a complex presentation such as additional conditions e.g. ADHD or mental health difficulties.

Research has shown that autism mothers especially have inordinately high stress levels, as tested by their stress hormones, such as cortisol.  There is no denying it.  An autistic child can have extremely challenging behaviours, despite the best efforts of a parent to recognise triggers and do all they can to provide the right environment for the child.  And it can be soul-destroying not to find any rhyme nor reason for explosive behaviour despite trying everything – especially if you are an autistic parent and have that additional insight.

This post, is about atypical perception, invisible communication difficulties, the empathy deficits that mean an autistic child cannot understand why lying can have detrimental impact on others (which overlaps with the atypical perception such that it can be very hard to define where it’s a lie or a serious misconstruing) and co-morbid mental health difficulties, that can drive an autistic child towards negative behaviours and intentions.  Of course, the mental health difficulties so often stem from struggles in the school environment and despite their best efforts, parents can do very little about those.

When an autistic child has atypical perceptions, they see and live experiences differently, they may put a completely different complex on a matter than the reality.  If that child is anxious or depressed, it’s likely to be a negative complex.  An example, is our youngest child attributing negative motives to everyone (and then because of PDA, seeking revenge on the ‘offender’) which are simply not there.  Autistics are often more easily traumatised by things than non-autistics, and the triggers for those feelings might be inconsequential to most people, but still very distressing to the autistic child.  There can be a tendency to exaggerate by the child, that may be how it feels to them and they can be confused, because of the atypical perception.

Autistic children are said to be very honest, it’s true autistics are on average more honest than non-autistics, but they can also mimic others and when they do learn to lie, can fall into a pattern of behaviour in a very literal way, that they think is socially acceptable because they have learned that peers lie and the autistic may struggle to find the ‘off button’ and go to the extreme with it.  Autistic children can be incredibly rigid too, and anxiety levels can drive the rigidity.  So if they tell a lie, they may doggedly stick to it and mental health difficulties may make them want to ‘punish’ the person they are lying to or about, by sticking to the lie, in the face of explanations as to the problems it is causing.

When an autistic child is intelligent, especially if they have mimicked things (including contexts) they have seen and heard from peers, from books or TV and films, they can appear to be completely plausible in their lie or misinterpretation.  Their vocabulary may be extensive which again lends credibility to what they say.  They may feel so anxious (in an existential sense) that they simply cannot think past their own emotions and feelings to realise what it is they are doing is wrong.  They may lack the empathy to see the consequences.  Mimicking can also make an autistic child latch onto something they have heard from another source and use it as a display of their negative behaviour, without true understanding of what they are saying, or the impact of it.

Of course, there is also literalness to add into the mix too and when combined with atypical perception, it is a double whammy to deal with.  Interpretation can be so off, but the response given seem to fit so well, that the untrained ear would not realise the lie, miscommunication or unintentional misrepresentation by the child.  PDA is a really good example of this.

The difficulty speaking up for an autistic child, may mean that they seek their parent to advocate for them.  Their parent is their place of safety and comfort, their parents are the people who understand them the most.  When they are masking in e.g. school, mimicking behaviours such as smiling and laughing and appeasing others to fit in, they can appear to be managing very well.  So the parent might be the only person presenting the child’s difficulties which others don’t see.  However, the release of all the stress of faking it all day, can be extreme.  In the case of a PDA child, it is the worst it can get.

A PDA child will utilise ever more sophisticated methods of not only avoiding what they don’t want to do, but to control the parent who they are focusing on.  PDA often means obsession with people, rather than things as in other ASD subtypes.  Much like OCD, the anxiety makes them want to control, and this will be controlling the person closest to them, which is often the mother.  That parent becomes the focus of blame, revenge, lying, manipulation and control by the PDA child.  The higher their anxiety goes the worst these behaviours usually become.  Underlying the behaviour may also be an anger that the world is a frightening and challenging place, that they believe mum should be ‘saving’ them from and seemingly isn’t.  The obsession may mean mum is put on a pedestal of superhero proportions.  Of course the higher the pedestal the further there is to fall, hence the negative obsession with mum develops.  The almost perpetual state of anxiety the PDA child lives in, means that mum is continually punished for not waving that magic wand and making everything as they wish it.  It can become for the parent, like an abusive relationship, where they are worn down by the control, violence, manipulation and obsessiveness of their own child.

http://www.thepdaresource.com/files/An%20examination%20of%20the%20
behavioural%20features%20associated%20with%20PDA%20using%20a%20
semi-structured%20interview%20-%20Dr%20E%20O%27Nions.pdf

“Several children displayed obsessive controlling behaviour towards a particular member of their family.”

“All parents reported their child blamed others when things go wrong, even when it was their own fault. This frequently had an irrational quality, such as blaming younger siblings or parents for their own behaviour, or using elaborate justifications to blame people for events they were unconnected to.”

It seems to be a common PDA set of behaviours that the child will try to control what the parent says, control what answer the parent gives to a question and when that is evidently not happening, it’s a trigger for a meltdown.  The parent can be prevented from retreating from the presence of the child, who may scream blue murder if the parent tries.  PDA parents end up walking on fine eggshells, to avoid an explosion.  The child can use manipulation against the parent to achieve their goal, whether that be avoidance, control, revenge etc.  Attempts by the parent to instill boundaries and maintain parental control can become impossible.

The child can be so confused by their social experiences, including within the family and their distortion of events can be marked, that communicating with the child is regularly fraught with the child flaring up irrationally.  It makes for very hard communication, because the parent can try to explain that a scenario or event was not how the child perceived it, but they will rigidly refuse to accept it.  Meltdowns can be triggered by such misunderstandings by the child.  There is no more frustrating meltdown, than one based on a mistaken understanding.

The lying and false accusations by an ASD-PDA child can be devastating to parents, who are trying their level best to support and understand their child.  The PDA Society helpline is aware of this as a serious issue for PDA parents, as this thread shows:

“I am one of the Trustees of the PDA Society and whilst every situation is different, I have encountered enquiries on our enquiry line from parents whose children have accused them of physical harm, mental cruelty and sexual abuse to mention a few.

Children with PDA do not realise the full consequences of their actions.

Their parents may have disciplined them or denied them a new pair of trainers and they can seek revenge in some very drastic ways but not realise how it will affect their parent.”

As that thread shows, the false accusations about parents are not always only made directly to the parents, sometimes – and tragically – they are made to third parties as a revenge behaviour.  This is where things become extremely serious.  When a child makes an allegation of abuse against a parent, they are usually automatically believed, hence it is termed officially as ‘disclosure’.  The odds are stacked against the parent because of hysterical attitudes towards child protection in the UK.  There is rarely adequate understanding of autism and for PDA it’s close to zero.  One clinician who does understand these false allegations is Dr Judy Eaton, at Help for Psychology.

Even with Asperger’s lying can be an issue.  The Complete Guide to Asperger’s Syndrome by Tony Attwood  (from p121-122)

“Where lying is becoming an issue for the family and friends of the person with Asperger’s syndrome, explanations will be sought. First, due to impaired or delayed ToM abilities, the person with Asperger’s syndrome may not realize that the other person is likely to be more offended by the lie than by any apparent misdemeanour. Second, he or she may consider that a lie can be a way of avoiding consequences, or a quick solution to a social problem. What the person might not acknowledge is that lying can also be a way of maintaining self-esteem should he or she have an arrogant self-image, whereby the making of mistakes is unthinkable.”

A sense of paranoia
One of the consequences of impaired or delayed ToM skills for the person with Asperger’s syndrome is a difficulty in distinguishing between deliberate or accidental actions of another person.”

There is research on the issue:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

“In contrast, other features characteristic of PDA very clearly differentiated PDA-like individuals within the ASD group. These included (amongst others) apparently manipulative behaviour, difficulties with other people, harassment of others, fantasising, lying, cheating, stealing and socially shocking behaviour.”

The child may use the threat of making allegations against the parent, to hold over the parent as a manipulation tool also.

When the child is seemingly unable to have empathy for others, is vengeful, distorts reality and lies profusely, this is a perfect storm for a parent to be under threat of false accusations and living in fear of it happening.

When you consider the autism ignorance out there, the myth that autistic children cannot lie and the parent-blaming by professionals, a parent can live in abject fear and not know which way to turn, when in this situation.

So this post is just to put this out there, much more needs to be discussed and done, about ASD-PDA families living in these untenable circumstances.  To anyone reading this who is in that situation, just know that there are many others out there.  It doesn’t help your personal situation of course, but feeling less alone, might be the difference between life and death for someone.

“The Root of Autistic Masking”

mask.jpg “But we don’t see it in school” (Mum must be lying), “S/he’s fine here, no trouble.” (Mum is attention-seeking, maybe she has FII), “Really? I can’t imagine him/her behaving like that, s/he’s never done that here.” (Mum must have poor parenting skills/there are issues at home).

So many autism parents have encountered this scenario.  Why?  Really – why, why, why, why – when there is much basic autism information available free online from reliable sources, which states that masking in high-functioning autistic children is commonplace?

Occam’s Razor says that the simplest answer is usually the correct one.  So, then I ask professionals, what is more likely – that most parents are devious liars with issues, that have nothing better to do than create work for themselves by inventing their child’s difficulties just for the hell of it?  Or that their child really is very anxious, struggling in the school environment and is holding it in whilst there and releasing it in an explosion at home?

Why do autistics mask?  Anxiety and/or inhibition.  Inhibition because they realised or sensed from early on, that they were different and struggled in interactions.  They are likely to have been excluded, ridiculed or bullied for being different.  They pressure themselves to fit in, because all anyone wants is acceptance.  They may also have developed a phobia about being told-off by teachers, or being unpopular with peers.

You know what’s sad about this situation (aside from children not being given either the diagnosis or help that they need that is)?  Is that autistics cannot be themselves.  That autistics have to put on an act, adopt a persona, to be considered acceptable to society.  That they have to live in fear of being judged for their differences.  Misjudged.  That to not be negatively targeted, they have to mimic others and suppress their natural traits.  And it is exhausting to mask.

Why would professionals, teachers and CAMHS clinicians, paediatricians, not realise these most basic facts (and they are supposed to be the ones experienced in children’s behaviours)?  That standing out and drawing negative consequences or reactions, is more than enough to make someone keep a lid on it until they feel safe to let it out?  That they may be in such abject fear and anxiety of the situation they are in, such as school, that they are almost frozen in fear for the duration.  To exist in that state for a whole school day, why is it a surprise that by the time they return home to their family, they are unable to do anything but display challenging behaviours to release it?

Obviously it’s not as simple as these professionals not understanding or realising.  It’s also highly convenient to blame parents, if blaming parents saves money.  Many professionals bask in the glory of their position and the power it gives them.  Some relish misusing that power to become playground bullies all over again, but this time it’s sanctioned by policies and procedures that are conveniently designed to be misused.  Professional bias goes a long way, it’s like a Mexican wave, one starts with a particular viewpoint and the others all willingly join in, oblivious to other possibilities because agreeing is an easy ride and also lets them off the hook if they have been responsible in any way for exacerbating the child’s difficulties (whether by accident or design).

The vast majority of parents see their child in difficulty and want to help them.  Behaviour is telling you something and autistics often have trouble speaking up away from their family.  So they may tell their parents how they feel but be unable to in school.  It’s normal for a parent to want to resolve their child’s difficulties.  Imagine how it is to approach the very people you are supposed to have faith in, only to be dismissed and made to feel it’s your own fault.  Imagine how it is to see your child being tortured every day and being like the last Spartan at Thermopylae against a Persian army, trying to save them.

I do also like to make a particular point on this topic when I can: when professionals say that a child being disruptive in school, must be having issues at home, then the reverse has to be true by their own logic.  That a child being challenging at home, must be having problems at school.  They cannot say that for both scenarios, the problems lie at home!

Professionals simply have to do some basic research such as by reading the above articles and learn to be accepting of what parents are telling them.  Teachers are rarely autism experts and do not have the qualifications to comment on whether a child could not be autistic based on them being passive in school.  If parents can learn this stuff, then you’d expect professionals who are in the job of being around children all day, to do so.  The more parents talk about this issue, hopefully more awareness of masking will be raised.

Stitched Up

Absolutely, the birth parents probably wrongfully lost their special needs children in the first place, the system is as corrupt as hell.

SEN Anonymous

IMG_9132Yesterday sure was a challenge. I’m trying to figure out how and why the social care system and the education system has become so deeply flawed and inherently damaging.

So yesterday, I had very distressed friends with me.  They are adopters of  children with varying challenges. They are a socially conscious and kind, caring couple who provide the best for their children.

They are legally entitled to adoption support, and are lead to believe that the state thinks All Children Matter, that they have a level base of various rights and responsibilities to their family and the future of their children.

However, like many more of us, they received no automatic support and when the pursued said support, they were met with obstacles.

Having met these obstacles, they persevered, thinking that they were right to do so and that the support would promote the best outcomes for their children.

Sound…

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“The Authorities Using Our Vulnerable Children as Weapons Against Us”

Suffer Little Children Matthew 19-14 Autistic children – like children with other disabilities – are vulnerable.  Because they are vulnerable they need additional support.  It is part of their parent’s role to seek that support and help, as any decent parent naturally would.  So why, are there so many professionals that actively obstruct this process and refuse the help and support those vulnerable children need?

This scenario can go as far as professionals lying about parents to avoid providing needed resources, and this seems to be common, shockingly.  In the worst case scenario, children are wrongfully removed from loving and innocent parents, to prevent that family gaining access to diagnoses or resources.  Cases can be and are, fabricated against parents, using false accusations of emotional harm and MSBP/FII, abuse or neglect.

Ultimately, who suffers?  The children of course.  Those vulnerable children are being used as weapons against their parents, who are just doing what not only nature compels them to do, but government policies themselves say they should.  So how is it that such policies are being misused against so many parents?  Because there are insufficient safeguards against it.  Because professionals are given too much power, to use their ‘professional opinion’ for iniquitous reasons and not only are there insufficient safeguards, but there is almost no policing or consequences for them having done so.  Because resources are guarded so fiercely and SEN parents seen as the enemy, professional departments think nothing of covering up wrongdoing, after all, that wrongdoing is encouraged and in fact, required.  This tells you what type of people work in those roles, at best weak and putting their job first, at worst, heartless and cruel.

Regulatory bodies frequently say either that they don’t investigate individual cases, are toothless bodies in name only, or simply ignore evidence against professionals because the policies that come from the top, actively encourage or allow this behaviour.  The public are left with suing as a method of redress and how many can afford that.

The stories of parents being threatened with false accusations or removal of their children are all over blogs and parent forums.  How did we get to a situation, where so-called professionals think it’s OK, to put a family through such hell to avoid providing resources?  Everything is money-driven, we know budgets are being cut, we know savings have to be made.  So it’s far more expedient for professionals to falsely accuse parents to avoid diagnosing or supporting a child with the condition they have.  What a government this country has, where money comes before lives and wellbeing.  How short-sighted and ironic.  The same government which penalises and punishes the disabled through making DLA/PIP so hard to obtain or keep.  Surely by providing the support that vulnerable children need is a long-term investment, because they may then do so well that they don’t need to seek disability benefits as adults.

How do these policy makers and professionals sleep easy at night, knowing they are condemning innocent children who are already disadvantaged by their disability, to serious struggles and gross detriment to their mental health and wellbeing?  Do they think that falsely accusing parents isn’t going to impact their children?  Obstructing and causing stress to parents is only going to be detrimental to them, and to leave their child without the support they need is obviously likewise going to put their children through a negative experience.  Many SEN parents can testify that when it boils down to it, the professionals who claim on paper that they put the wellbeing and outcomes of these children first, do absolutely nothing of the sort.  They are using our children as weapons against us.

Whether it be by employing LA educational psychologists who, despite claiming ethics and independence, write reports that deliberately do not accurately represent the child’s true needs, or by trying to force parents to send vulnerable children into unsuitable mainstream placements, or forcing parents to SENDIST leaving their children suffering during the whole drawn-out process, by refusing to assess for an EHCP, by forcing parents into obtaining private reports to get what their child needs – or by actively making false accusations against parents and destroying families.  Money is the root of all evil (Timothy 6:10).

And sadly, for the sins of those who put money first: Suffer the little children…(Matthew 19:14)

 

The Imbalance of Power

Another great blog post from It Must Be Mum. The greater the power the more dangerous the abuse.

It Must Be Mum

By Rosie and Jo’s mum

When, close to tears of frustration, I told the LA case officer that, by refusing to issue the proposed amended statement which was three months overdue, she was withholding my right of appeal to the SEND tribunal, she looked me squarely in the eye and shrugged her shoulders.

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Pain

Reblogging because the torture autistic children go through daily in the school system, the trauma that is unacknowledged by professionals (unless it’s to deflect the blame falsely onto the parent) is described so well here. A parent truly sees their child’s pain, all the while professionals dismiss it. Especially agree about the child losing trust in adults who don’t listen and the loss of their childhood. Tragic.

It Must Be Mum

I’ve been wanting to write about this and still can’t really find the words.  I want ‘people’ to stop and think, really think, about what it might be like to see your child in emotional pain, extreme fear, anxiety, confusion and significant distress every day.  Literally every day.  Many times a day.  Often so severe that hysteria and / or dissociation is their only escape.

Sometimes they will scream and sob, stuff clothes into their mouths to reduce their own noise because even their own noise hurts their ears.  Sometimes they dissociate and completely become some-one or something else.  Their screams and cries when in this state are indescribable, Peter would dig holes in the carpet with his fingernails to try to escape, crying ‘die’ over and over.  Sometimes he would regress into a baby state so significantly he was unable to walk or talk.  Sometimes he was a dog…

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Autistic Burnout: The Cost of Coping and Passing

Detailed post reblogged, containing multiple autistic sources and explanations of what it costs, to be autistic in a majority neurotypical society.

Ryan Boren

Being a “high-functioning” autistic or having high-functioning depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

Autistic burnout, it permeates every area of your life.

Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.

Being something that neurologically you are not is exhausting.

Source: Ask an Autistic #3 – What is Autistic Burnout? – YouTube

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly…

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I’m not “mum”

Fabulous retort from “mum” and also the assumption that the casually dressed outreach worker being mistaken for “mum”. Hope that taught these discriminatory professionals a lesson. A worthwhile reblog.

It Must Be Mum

“You must be mum.”

Four words that put you nicely in a box and out of the way, even when you are present in a meeting.  That introduction says so much – you know you are simply there to be tolerated, to tick off a requirement and that you are expected to sit in the box marked ‘mum’ and ‘behave’.

For a disclaimer, please the the last paragraph, but in the meantime, how do you respond?  “I am Peters’s mum, My name is Phillipa – and you are?” is the one I used last time around.

I don’t know any parent that doesn’t hate this approach at times.  It can feel dehumanising and I think it sometimes serves a powerful purpose for the rest of the people in the room.  It can be used to state very clearly the hierarchy of those present.  Everyone else is a human, a person with…

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No smoke without fire? ‘Safeguarding concerns’

Reblogged as this terrible issue is widespread.

It Must Be Mum

I’d have been the same.  I would’ve thought “I bet there is more to this story, a whole ‘other side.’ There will be something legitimate that triggered the Social Care referral, I bet.”

That is, until I read the contents of Peter’s school and local authority (LA) files.  To say it was interesting is an understatement; I literally shook in shock for three days.  What had gone on behind the scenes, completely unknown to me, was like a never ending horror story.  I remember crying and screaming hysterically over and over down the phone to one someone “They will never, ever, stop and there is nothing I can do. They won’t stop. They just won’t stop.”  That is how it felt, and that is what, in fact, had happened over the preceding three plus years behind the scenes….  What I had read was a relentless stream of harmful rubbish – documented…

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When ‘Mum’ Seems Anxious

Nobody understands, until they go through this…

It Must Be Mum

A guest blog by Helen and Jack’s Mum

‘I suspect the problem is her Mum who is really overanxious’. ‘I only spoke to Mum once but she seemed very over stressed’.

I knew what was being said about me in that meeting because my friend was sat there, not as my friend but in her role as a teacher from another school.  She told them she knew me socially and she had already asked me if it was OK to stay in the room while ‘We’ were being discussed by the meeting.  I had said it was OK for her to be there – she knew it all anyway and looking back now with hindsight, I’m so glad I had one person sat there believing what I said was true.  I also had one person who was brave enough to tell me what was truly said at the meeting.  At…

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“CAMHS and Autism – A Story in Pictures” Episode 2

camhs-post-2camhs-post-3  It had to be done.  Due to the popularity of the ‘first episode‘ I thought a follow-up was warranted.  Autistic children are suffering across the UK, from missed diagnosis, misdiagnosis and tardy and inept support from CAMHS.  So here be it (read it and literally, weep…):

camhs-post-7camhs-post-6camhs-post-4camhs-post-10camhs-post-14   camhs-post-8

camhs-post-12     camhs-post-13     camhs-post-11

camhs-post-5     camhs-post-15     the scream.jpg

 

 

 

When School Staff Refuse to Accept a Diagnosis – some key questions to ask

Couldn’t have said it better myself. Please do read this reblog. The point being, school staff are totally unqualified to reject a medical or clinical diagnosis. Have they not heard of masking! Plenty of information free to read on the internet about different behaviour between school and home. Perhaps such teachers should start here: “Different Behaviour Between School and Home & Elsewhere Phenomenon in Autism” http://media.wix.com/ugd/58c8f1_c505444bbbf44a45aab6acbad9255e1a.pdf (various links about it within that).

It Must Be Mum

Many things have shocked me to the core these last few years and one of them is the apparent ease with which people trained to teach can decide that Health Care Professionals that are trained to diagnose are wrong.

How can that be possible?

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The ‘Surprise’ Child Protection Meeting

Shockingly familiar situation to many other autistic mothers with autistic children. Targeting and malice by the LA and schools. A nest of vipers discriminating against dedicated autistic mothers.

It Must Be Mum

It was snowing, I felt empty as he packed his last bag into the car, this was my new life as a single mum to three.

They would see their Dad, and there was a glimmer of hope that social care would finally provide the help we had been begging for to prevent this break up.

You see, we had been asking for over a year. When Phoebe was in Tier 4 (CAMHS inpatient psychiatric care), the psychiatrist had been very blunt with social care.  He made it very clear that without support caring for an autistic 9-year-old with no sense of danger and severe mental health difficulties, including command hallucinations (voices instructing) that we would inevitably experience carer burn-out.  That fell on deaf ears, the reason – we had ‘managed’ on weekend visits.

Referral after referral went in, but the case was never looked at, beyond a “no”.

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