Neurodivergent News 13.09.24

Positive Shifts and Interesting Turns in Neurodiversity

Sep 13, 2024

person in blue denim jeans holding white magazine — Photo by Ludovica Dri on Unsplash

Dear neurokin,

The headline of my Neurodiversity news offer this week is:

“Finally, Someone is listening! neurodivergent women, carers of neurodivergence and disability, are bearing the brunt of a broken eduction system”

You can access this Woman’s Hour programme here

This week in the UK there have been a series of BBC radio programmes focusing on the crisis that is happening within the Education System for SEND (special educational needs and disabilities).

This crisis has been brewing for far too long and becoming cumulatively worse since the Pandemic in 2020.

I sobbed when I listened to the programme.

Why?

Because after four years of fighting and feeling like I have been shouting into a void, an abyss, to get my autistic child the support he desperately needs to navigate mainstream education, listening to this programme I finally felt like someone was listening.

SEND Fight Club

From my own experience of fighting to get adequate support in education for my child:

Hours of stressful and confusing navigation of a system hostile and difficult by design.
- It becomes like a part time job of constant “evidence gathering”
- Your word is never believed - its constant gaslighting within a dehumanised system, that totally ignores that this is about a child’s need and right to education.
Burden of proof is on you to paint a picture of the worst ever day, biggest struggles and fears for your child, repeatedly. Over and over again, writing about the worsening scale of the situation. Forced to gather more evidence, pay for more specialists, in order to be believed or even to be listened to.
All whilst watching the situation worsening for our children. Becoming more scared, exhausted and anxious. Feeling utterly powerless to get our children the help they so desperately need to do well, to thrive and access the education they, and every child, deserves.
To receive letters that contain statements like “your child’s needs are insufficient. Your child (age 10) can read and so we do not deem their needs sufficient enough to progress your application for additional support”
You raid your savings to pay for very expensive SEND consultancy services, another bureaucratic minefield, where they tell you that you must spend even more money than you have, to gather more “evidence”
All of this causes a whirlpool of shame, fear, exhaustion, guilt, overwhelm.
If, not when, you finally get the support you need, often after a long legal battle (for us in the form of a legally binding EHCP (educational health and care plan) you still need to fight for support needed.
“Managing” the (under resourced & underfunded) school on a weekly basis, constantly advocating for your neurodivergent child.

I sobbed, when I listened to this programme, because I finally felt they were not only listening, they were taking it seriously.

Using words like “scandal” “broken system” “not fit for purpose” and “mothers are at the sharp end of a broken system, where the transfer of the problem is being pushed down to them, rather than up to the central Government to address”

The programme had a healthy mix of voices:

Politics - The minister for School standards Catherine McKinnell
Those with power and a title to be taken seriously - Dame Rachel De Souza who as Children’s Commissioner for England has been conducting a review of SEND in crisis and has been speaking to 1 million children about their experience in education.
Women who have had to give up their businesses, their work, their life, to be full-time carers, advocate and lawyers for their neurodivergent and disabled children who cannot cope with the inflexible, one size fits all mainstream education system
A public personality - Actor Kellie Bright, who spoke passionately of her struggles and challenges to get her son access to support. Sharing the rawness and reality of the exhaustion and stress this creates whilst trying to maintain work alongside the other demands of life; caring for the rest of your family
The mighty Marsha Martin - Founder of Black Sen Mama’s - only being given the opportunity to briefly explain the stark realities of intersectionality and how black families are existing as a “minority within a minority, of a terrible system”
A SEND Teacher
A legal expert - IPSEA
And most powerfully of all Katie, a 17 year old autist who has been deprived of the right to an education since year six of primary school. The result of not being listened to and constantly forced into a rigid mainstream education has resulted in total break down in her health and PTSD. She passionately shared “The system has no empathy for children or families”

The Scale of the Problem

“Children without a school place is a scandal” Dame Rachel de Souza, Children’s Commissioner

Dame Rachel de Souza was upfront about the scale of the problem with her opening statement above. She went onto share the following statistics:

The children who are unable to attend school due to the severe anxiety, trauma, burnout and mental illness it can cause them - which was referred to as “severely absent” has seen a 50% increase to 100,000 since the pandemic
- 11,000 children “fell off the school roll” i.e the impact of the rigidity of the education system has made them so severely ill and no alternative to mainstream education is considered or offered that they have no access to education
- 13,000 are home educated. Parents are so desperate to protect the well being of their children that they have made the very difficult choice to home educate them. Undoubtedly effecting their own wellbeing and ability to work. Often without access to any kind of funding at all of to provide this provision.
- 1000 children are totally unaccounted for. This scandal is referred to as “Ghost Children” They are not ghosts they have been scandalously denied the right to their basic human right of an education and the system simply ignores them.
The children’s commissioner acknowledged the vast majority of children want to be in school but there is no provision for them.

“This adversarial system is focused only on ‘how much will this cost?’ when it should be asking ‘how can we make this work for you?’ “ Dame Rachel de Souza

The impact

A generation of neurodivergent and disabled children are being denied the right to an education where they can thrive or reach eduational attainment.
It’s causing too many children to be burned out, traumatised, at risk of developing mental illnesses.
Impacting on the working lives, relationships, mental, physical and financial health of women
- In a Woman’s Hour poll
  - 73% consider the SEND Education System to be broken
  - 60% have had to give up work/cut hours to support children/fight for their access to an education
  - 73% have considered cutting their working hours but can’t afford to
  - 40% are not coping emotionally

Positive Twists and Interesting Turns

United we stand!

Always, one of the best things about the growing neurodiversity community and acknowledged in the Woman’s Hour programme; we are a supportive community, sharing our knowledge.

Together, we are standing up to this broken system.

Now our voices are being heard and its is being openly declared a scandal and an emergency.

“No money, no mandate!” shouted an audience member.

“Tear it (the Education System) up and start again!” declared Kellie Bright.

We need to boldly redesign the whole education system.

Of course we do, neurokin. For we see how it’s all interconnected and can be designed for equity, inclusion and systemic efficiency!

What’s striking a chord with you?

Neurodivergent News 13.09.24

Positive Shifts and Interesting Turns in Neurodiversity

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