Dr Jo Billington
@MsJoBillington
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Researcher of autistic children’s experiences of mainstream primary schools @UniRdg_Psych ▪️Equity & social justice ▪️Views mine ▪️Usually furious
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Joined March 2013
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2 fab talks coming up from the Wellbeing hub
Free, online, 7-8.30pm
19/09
@BigBadBee
: Mentoring as Reframing - Specialist Autism Mentoring at University
10/10
@DrAmyPearson
: Understanding autistic masking as a response to stigma
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Just had a call from my son's school. As a parent of children with SEND, I always expect the worst. But rather than bad news, the teacher was calling to let me know how hard my son's been working & how impressed he is. Wow! Amazing
#itsthelittlethings
#costsnothing
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Seeing lots of tweets from autistic ppl bracing themselves for the distress caused by autism awareness week which starts on 28th March.
Is it time we ditched this outdated largely NT-led practice, or can it be improved so that it actually represents the wishes of autistic ppl?
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What a day. My youngest boy, who has been out of school for 2 years, managed a full trial day at a new school. He went to every lesson and worked his socks off.
I couldn't be prouder of him.
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The main problem with an education system entirely focused on exam results is that children who are not academically able develop the sense that they are hopeless failures - not just academically but as human beings too. To feel worthless at such a young age is a catastrophe.
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Christ alive. I’m so sick of disabled people’s worth being measured in economic terms.
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Can I just make it clear that not every child with an EHCP is ‘vulnerable’.
I’m deeply ambivalent about this term, especially when it’s applied in this blanket way.
Many children with EHCPs (including my own) require them to ensure equality of opportunity, nothing else.
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My son’s year 11 prom:
* £45 entry fee
* Transport to and from a venue miles out of town not served by public transport
* Requirement to wear black tie/formal wear (which most 16 yr olds would need to hire/ buy)
For a state school, this feels all kinds of wrong.
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On
#WMHD2020
, a reminder that autism is not a mental health condition.
The fact that so many autistic people suffer poor mental health is due to a lack of support and acceptance, not their autism.
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Let’s be clear, these kids are not “given” support plans, they require them and are legally entitled to them.
It’s worth remembering that such plans would not be necessary if our education system as anywhere near as inclusive as it claims to be.
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Applying on the phone for PIP for my 16 year old son
1st question (asked abruptly from what is clearly a script): is he likely to die in the next 6 months?
My god. Where is the humanity? Makes me wonder what happens to the script if the answer is yes.
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I am so fed up of taking part in SEND consultations, evaluations and surveys. They take up so much of my time and emotional energy and after 10 years of absolutely zero improvements in the SEND system, they feel completely pointless.
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For all the parents struggling with home schooling, please spare a thought for those families for whom this is the everyday normal. Not because of choice, but because they have a child with special needs and there are simply no suitable schools available.
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After almost two years out of school, this text message from my boy after his 3rd day in his new school is beyond anything I could have hoped for.
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My son went to school today.
Many people will think this is unremarkable but for him it’s a huge achievement. It took courage and determination.
Tomorrow may be a different story.
#hiddenheroes
#onedayatatime
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It’s worth remembering that ‘SEN’ is a policy choice, not an innate way of being.
Those so-labelled arise from the inaccessibility of the education offered. If the numbers of kids with SEN is rising, it’s an indication that the the education offered is becoming less inclusive.
4. Stop the SEND explosion in schools.
The number of pupils issued with Education, Health and Care Plans has doubled in the last eight years.
There are some cases of genuine need - but many are responding to incentives where an EHCP is a golden ticket.
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So much of being the parent of a child with SEND is trying to secure their minimum legal entitlements while being seen as unreasonable for doing so.
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I successfully passed my PhD viva today. Huge thanks to my examiners
@DrAmyPearson
and Dr Kate Harvey for their sensitive & interesting questions. Thanks also to my supervisors Dr Fiona Knott, Dr Tom Loucas &
@shioma_lei
for their support of me & my research
#PhDone
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I've just realised that I end every Zoom call by waving goodbye to everyone. I am mortified.
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SEN is a policy decision, not an innate way of being.
It’s determined by the distance between what a child needs to learn and what is being provided.
If 30% of kids can’t access what’s being offered without significant help, maybe our education system needs a rethink.
The numbers of children with SEND at our schools is rising year on year.
And our ability to resource effectively to meet those needs is diminishing.
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Thrilled to announce the launch of my new project - the Centre for Autism Wellbeing Hub. Please join us in person or online on the 9th November at 7pm to hear more about it and see how you can be involved in shaping what we do. Booking details below:
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“Sarah’s daughter used to say she’d rather be dead, so she didn’t have to go to school”
Many autistic children have to make a choice b/w being able to function or going to school.
These kids are the canaries in the mine. DfE, OFSTED - please act now.
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I’ve just discovered the World Bollard Association account and I think it’s all the Twitter I’ll ever need.
Bollards save lives AND bring immense joy and happiness to the world.
#WorldBollardAssociation
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Further proof, if needed, of this Government’s contempt for children labelled with SEN.
‘SEN’ is a policy choice, not an innate way of being. If numbers are rising, it’s an indication that the our so-called inclusive ed system is anything but.
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For those who don’t know much about PIP, the eligibility criteria are extremely high & difficult to meet.
It is also, crucially, not an out-of-work benefit but a way of meeting some of the myriad additional costs disabled ppl face incur due to our inaccessible & hostile society
Our disability benefit system hasn’t been reviewed in over a decade.
We want to make sure it’s fit for the future, with enhanced support for those who need it most and better value for the taxpayer.
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@Yogaimmunity
@Wincrotty1
@milton_damian
For me, the main concern about CBT is that it doesn’t take into account the level of injustice & hostility autistic people face. CBT suggests that wellness comes from shifts in thinking. This locates the ‘problem’ within the individual rather than exploring the impact of inequity
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I am keen to hear how the
@Telegraph
are going to respond to one of their journalist using disablist slurs. To describe autistic people as having a lack of intelligence, humanity and empathy is discriminatory, not to mention utterly baseless. Comments like this are harmful.
Lockdown was the brainchild of a bunch of men on the spectrum.
They lacked the emotional intelligence to feel or anticipate the appalling consequences of criminalising human contact.
They still have the gall to claim it was the right plan.
My column:
The Covid Inquiry gets
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We need a better term for “emotionally based school avoidance”. Although better than “refusal” it still gaslights the child for what is often a rational response to a hostile environment. Locating the problem in the child’s emotions is also a barrier to addressing the hostility
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The wall of silence when no-one turns is excruciating. The kindness of feedback has been sacrificed for the sake of ad breaks
#thevoiceuk
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Proudly wearing my
@UniofReading
#RainbowLanyard
today, as always.
Fortunately the self-proclaimed ‘minister for common sense’ has no jurisdiction here.
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If you know someone whose child struggles to attend school, reach out.
It’s absolutely paralysing and effects every possible aspect of family life.
#BeKind
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“many schools expect an assessment & formal diagnosis to access support – and children…suffer while they wait”
This reflects a widespread & damaging myth. Nothing in law mandates a diagnosis before support can be provided. Schools need to know - & meet - their legal obligations
NHS faces ‘avalanche’ of demand for autism and ADHD services, thinktank warns
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This makes me sad and frustrated. Once again, the burden for coping with a hostile society falls to those who are the victims of that hostility. This must change. (/end)
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Re-reading the autism & bullying literature this morning for a paper I'm writing. This phrase from one paper captures a typical theme in the literature:
"Strategies are required to support & improve the
social interaction skills of children with an ASD...(cont)
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This is one of my most insightful pieces of writing on autism I’ve read.
Thank you
@Hannahgadsby
.
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Yesterday I heard of yet another mother of a disabled child being subjected to a psych assessment to ensure that she was fit to parent - all because she complained when her child's school did not make the required SEND provision.
Is this what a witch hunt looks like in 2022?
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On this
#WorldMentalHealthDay
, a gentle reminder that despite being classified in the DSM, autism is NOT a mental health condition.
There’s absolutely no reason why autistic people should be expected to live with mental distress simply on the basis of their neurodivergent status
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We MUST do better for our autistic children and young people. School is just intolerable for so many autistic kids and it doesn’t have to be that way.
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Instead of ‘the importance of attendance’ we need to be focusing on the importance of felt safety, belonging and inclusion.
For many children, young people and staff, schools are toxic places.
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10 years in the SEND system and I am still surprised by how gruelling the start of a new academic year can be for kids & their families.
Day 3 and I’m already a wreck.
If you have a friend or family member with a child with SEND, and you have capacity, please reach out to them.
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**Rant warning**
As I lament another day lost to SEND paperwork, I am struck again by how hard we've had to fight to secure a suitable education for our children. People who don't live this life simply don't believe me when I tell them. 1/
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How about we stop fetishising the taxonomy of autism and shift the research focus (and funding) onto projects designed and conducted by autistic people for the benefit of autistic people?
We need to subgroup the autism spectrum but will the new term 'profound autism' be helpful? Instead we could use neutral terms like Type 1, Type 2, etc., to describe subgroups on on the autism spectrum. We should only subgroup to benefit autistic people
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Nowhere have I seen the suggestion that the NT kids need support too (or instead).
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The idea that the practices within our education system could be part of the reason why some children find school so intolerable that they cannot attend is rarely considered by those in positions of power & influence. It’s obviously easier to deflect than reflect.
As we look to September, I want every public service that supports children to prioritise attendance.
It's my ambition for children to be in school 100% of the time, which means everyone must play their role in tackling school absences.
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"When a person is drowning, that is not the best time to teach them how to swim"
No learning can take place when a child is in distress
@Andylowarousal
#copro19
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I think the hardest part of being a SEND parent is that almost every aspect of family life is affected by the actions/inactions of others.
The impact of the lack of agency and autonomy is hard to describe to those who don’t live this life.
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I'm really enjoying this book but it is so clearly written by men for men. Imagine a life in which cooking the family dinner was a special 'highlight' that was marked out in the calendar. Grocery shopping & cooking is just a daily requirement for most women, not a special event
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If you have ever wondered why some observers might consider schools to be hostile environments for neurodivergent pupils, take a look at this. I can’t think of a single autistic or ADHD kid who would escape sanction under this system - simply for being themselves.
I have been sent a v long letter (4 actually) about the new ‘exciting’ ‘behaviour management’ system for my child’s school, that I gave up. Does that make C3-02? Jeez. Inaccessible and makes me feel like it is 1987 all over again 🙄
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Chatting with a friend this morn ahead of their child’s EHCP annual review.
I’m not sure if education, health & social care profs have a full grasp of how overwhelming ARs are for parents.
The emotional, practical & mental energy that goes into the AR leaves many of us reeling
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Shocked by the tone of this article in
@thetimes
. As stated in the UNCRC, *every* child has a right to an education & *every* child with a disability has the right to live a full & decent life with dignity.
How does your article support these principles?
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Are we at the stage in the run up to Christmas when it's fine to just eat a steady stream of snacky things instead of 3 square meals? Asking for a friend.
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Just found out that a grant application has been successful. It's only a small project but it's my first postdoc application and I am elated. Will share more info in the new year but the project is about amplifying the voices of autistic children and young people.
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#BBCnews
, please stop the constant conflation of social care & old age. People of any age can depend on social care & your lack of representation futher marginalises & invalidates those younger people who are also struggling to secure the support they need to live full lives
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SEN is a policy decision, not an innate way of being.
It’s defined by the gap between the needs of a child & what their school can typically provide.
Are there more children with SEN, or is the provision gap widening due to an increasingly exclusive education system?
🧵 Clips below:
Cllr Hammersley: "Is it something in the water?"
"Why are there so many people jumping out with these needs? Where were they when I was at school?"
"Why do so many people have this badge of SEND and special needs?"
"To stop this spend fix the problem at source"
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Silent schools.
Article 12 of the United Nations Convention on the Rights of the Child:
“Every child has the right to express their views, feelings and wishes in all matters affecting them…This right applies at all times”
It’s seriously impressive when you can hear a pin drop during a school’s silent line ups & transitions. Students moving with pace & purpose in a safe & controlled manner, pausing only to greet their teachers with ‘Good Morning/Afternoon Miss/Sir.’
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...to enable them to develop and maintain
meaningful peer friendships and avoid victimization"
This comes up A LOT - how autistic kids need to be better at socialising in NT ways so that they don't get picked on.
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The Chair of the Social Mobility Commission "doesn't believe in making allowances" for pupils w/ SEND
Under the Equality Act, schools have a legal duty to protect disabled ppl from discrimination by making reasonable adjustments
It's not a matter of belief. It's a point of law
'Britain's strictest teacher' explains how she deals with kids with additional needs as part of a Times interview. When I took her to task about SEND education, she blocked me. It's evident she simply couldn't care less about kids who are different.
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Presently, a person can be forcibly detained under the Mental Health Act simply because they are autistic.
Autism is not a mental health condition. This archaic legislation must be changed.
The Mental Health Act is 40 years old this week.
Understanding of autism has grown massively in the last 40 years, but the Mental Health Act hasn't kept up.
Sign the open letter asking Govt to follow through on vital mental health reform. It's
#TimeToAct
.
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A colleague has just sent me the latest WHO guidelines on mental Health in Schools
Sad and frustrating to see autistic expression conceptualised as a collection of 'troubling behaviours' - especially from such a trusted source used by many educators
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Feel it’s timely to remind folk that a child with an EHCP isn’t necessarily vulnerable.
Lots of conflation of the two on my timeline.
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The woman holding
@DamianHinds
to account on
@bbcquestiontime
last night is my sons' wonderful teacher. She's fought our corner every step of the way in terms of SEND support but I wish she hadn't had to. She's amazing. Bravo!
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Thinking of all the autistic kids for whom the sensory discomfort & unpredictability of
#WorldBookDay
makes the prospect of school even more difficult than usual.
Add to that the pressure to have “fun” & not be a “spoilsport” and you have a recipe for distress and shame.
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After being a student
@UniofReading
for about 400 years, I’m officially a member of staff. Excited for the post-doctoral journey ahead 🙌
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For parents and carers of children with SEND, this is not a joke. The constant rounds of emails, phone calls, meetings, assessments, and reviews often leave little possibility of paid work, regardless of what’s set out in the Care Act.
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Every time I think I've stumbled on a new idea in my research, I find that the brilliant folk over in disability studies have been discussing the very same thing for DECADES. Seriously...psychology needs to hang out with sociology and philosophy more often.
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Just had my annual PhD review with my internal monitor. She told me my research was 'Rolls Royce standard' and I'm now walking on air.
I say this not to boast but to highlight how important encouragement & endorsement are in the often lonely and uncertain PhD process
#phdchat
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Listening to my son talk about the GCSE papers he has completed this week, I can see so clearly how this form of assessment disadvantages neurodivergent learners. Time pressures, lack of thinking space, having to put yourself in the mind of the examiner...the list goes on.
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I'm delighted to say that as of the 17th September I will be joining the team
@brookes_edu
as Lecturer of Child Development, SEND & Inclusion. I am absolutely thrilled & I can't wait to start working with our fab students to build a better future for educators and learners alike.
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Growing up with a dad who’d rather wear all his clothes than turn on the heating even on the coldest days, it still feels wildly exciting when I flick the switch each autumn. Like royalty-level decadence.
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@matthaig1
Even in isolation this is beautiful, but within the context of your book, it made my heart burst and brought tears to my eyes.
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This absolutely breaks my heart. Intense catch-up, discipline and 'behaviour hubs'.
At a time when care, compassion and understanding have never been more important.
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This is especially worrying since the latest research suggests that feeling compelled to hide one's own natural forms of expression in order to appear more neurotypical is directly connected to mental health difficulties and suicidal behaviour in autistic people.
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@milton_damian
To me, the most perfect example of resilience is an autistic child with school-induced anxiety who gets up every day, puts on their uniform, and tries again. Day after day.
To be told when that child crumbles that they need to develop more resilience makes my blood boil.
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I know people’s appetite for online events on weekends is probably quite low, but if I was to organise a virtual
#BrewEdSend
for later in the year, would anyone be interested?
I think the pandemic has raised some important questions around how CYP with SEND are supported.
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My abstract has been accepted 🙌
“I liked school, but school didn’t like me”: autistic young adults’ reflections on their mainstream primary school experiences
It's my 1st BERA conference so if you're attending & you're an autism education researcher, please give me a shout
Keep an eye out on your inbox! 👀
Authors will be notified of the outcome of their submissions on the 18th March 2024
#BERAWERA2024
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EHCP annual review day today. We’ve been doing this for 2 kids for 10 years and it doesn’t get any easier. Endlessly draining and frustrating.
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This typically means more social skills interventions, small group work (with other victimised kids, usually) and more time out of class.
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Sorry to be a party-pooper but wearing yellow will do nothing for autistic child mental health. If anything, the change of routine & potential visual overwhelm might trigger panic.
We need to stop faffing around with gimicks and start dismantling the neuronormative hegemony.
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Sending love to anyone who finds today difficult x
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Good grief. And there’s me thinking a labour govt might improve things for autistic kids. This is just one more neuronormative stick to beat them with. Harmful demagoguery.
“The inability to speak fluently is one of the biggest barriers to opportunity.” Starmer explains why he would change schools’ curriculum to include speaking skills, oracy “Confident speaking gives you a steely core.”
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Imagine any other part of the legal system in which government lost 98% of cases. At huge expense to taxpayers, never mind the myriad costs to children and families. Something would change, right?
Latest SEND Tribunal stats published today by
@MoJGovUK
show more appeals than ever, with an astonishing 98% of cases decided by the Tribunal last year going against local authorities. It couldn't be clearer that unlawful decision-making is endemic. 1/2
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Is there any wonder why autistic children are much more likely than their non-autistic peers to experience academic underachievement, bullying, exclusion, poor mental health & impoverished outcomes across the lifespan? Effective school inclusion is part of the foundation of life.
I appreciate your child has autism.
But, I say again, there are TWENTY-NINE others in the class.
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Y’know that EHCP=golden ticket narrative? The one in which sharp-elbowed middle class parents game the system to get their kids into fancy schools? Well this tweet expresses how it really is better than I ever could.
A cruel & unusual form of torture.
No-one would choose this
I have never in my life done anything more distressing and humiliating than pursue this EHCP for Tilly. It is a cruel & unusual form of torture. It is utterly corrosive.
(Just howling into the void. Any validation appreciated, but I prob won’t have bandwidth to engage in convo.)
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Just wanted to send a shout out in solidarity to all the families who are supporting children & young people who are anxious about the start of the new school year. I hope they feel brave enough to enter the school gates and are welcomed by people who recognise their courage.
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“Dozens of young autistic people have died after serious failings in their care despite repeated warnings from coroners”
We know what the problems are. We’ve known for decades.
This is why programmes like
#NATPmentalhealth
are so important.
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School is not always a safe place for children - especially if those children are autistic
What is your academic opinion that would leave people like this?
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Just submitted my thesis corrections. On my son's 18th birthday. Big celebrations all round, I think🥂
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Public Service Announcement for Local Authorities: a 3 hr activity for your child cannot be described as a "short break" and absolutely does not equate to respite. Thank you.
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I tell you what, trying to navigate the SEND system while doing pretty much anything else is really hard. It's all-consuming.
If you know someone with a child with SEND, please offer any help you can, even if it is just a smile or a hug. It will be so very much appreciated.
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In the run-up to the full reopening of schools, pls spare a thought for the kids who have no school to return to. The ones who had no school place before the pandemic hit. This is likely to be an upsetting time for them. A stark reminder of how different they are to everyone else
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@rcolvile
For context, my disabled child should be able to attend our local mainstream schools but since none are able to meet his (not in any way exotic/wildly unusual) needs, he has to travel to a school 30 miles away. How else is he supposed to get there? Nothing golden about that.
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I'm recruiting for my latest study into the mainstream school experiences of autistic children.
If you're the parent/carer of an autistic child in yr 5/6, please follow the link for information.
I'd love to hear from you and learn from your child.
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My children have lost the right to study, work and live in 27 countries but that’s ok because they can now buy wine in 568ml bottles instead of the horrendously cumbersome 750ml variety
#bollockstobrexit
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As kids return to school (accompanied by the narrative of how damaging it is to be out of school) we need to remember the many thousands who have no school to go back to.
My child is one of them.
Who’s looking out for them? Who’s concerned about their wellbeing & prospects?
@BorisJohnson
@GavinWilliamson
190 children and young people in Bristol with an EHCP have no school place for September. They will not be returning to school because of Send failures both locally and nationally. Next year another 250 potentially on top. Don't pretend that all children count. They do not.
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Today, I'm transcribing the interviews I've done with autistic children this week. So much wisdom, and this gem melted my heart:
Me: So, tell me about your class?
Child: Erm, well, it's less of a group of peers, more like a group of friends, really. A big old group of friends.
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Yes! The autistic students in my research cite teachers who shout as those who cause them the most distress.
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Another punitive govt policy which will disproportionately impact the lives of autistic folk.
Access to appropriate & adapted treatments is desperately needed but they don’t yet exist at scale if at all.
This is disablism. Plain and simple.
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