Who we are

My daughter always struggled at school. Quirky they called her. Couldn’t understand friendships.

I remembered being like that at school too. But I thought I was just a bit stubborn, because I wanted to play my games; not theirs. So I would sit out.

Move forward to Year 5 at school and there was a particular teacher. My daughter felt completely bullied by other children, and now the teacher. Not intentionally, but through a lack of understanding.

Moving schools made such a difference. Wellbeing first. Then suddenly things started to click with learning.

But there was definitely something.

A CAMHS referral was made for support.

The school suggested Dsycalculia. Not covered by the NHS, so we booked a private assessment. We are fortunate enough to be able to do so, though it wasn’t easy.

Nope not Dyscalculia, but definitely something.

Possibly Dyslexia, possibly Autism, possibly ADHD. Well that narrows it down. But those are all quite specific aren’t they? I thought. I’ve definitely learnt a significant amount since then!

Wait list for Autism (ASD) - 4 years. Oh. Right. Erm….we’re already in year 6 and the gap is widening.

More private assessments booked, and credit cards loaded. I’ll deal with that later….

Within about 8 weeks - definitely ADHD traits, but we actually think they are linked to Autism.

So we got a confirmed Autism diagnosis. Right ok, so what now?

Well, schools don’t have the training or budget, and actually year 6 was nearly over. But at least we could tell secondary school about the diagnosis. That had to mean something!

Over the summer we also had the Dyslexia assessment, which was also diagnosed.

When all of this began, and I started to learn more about Autism, I really looked at myself.

Well hold on, I said. This girl of mine, is literally a smaller version of me. We argue and she puts me in my place. Not because I back down, either! Because she makes a valid point and I can’t help but applaud her for doing so!

All these Autistic traits, Dyscalculia. They all matched me to a tea!

Things had to be in their place.

Flare ups at simple things. I thought being organised was just good sense, and that I was managing a lot in life so, yes, I might get annoyed if you can’t just put the blooming tea towel where it belongs (plus the ton of other things that just move and never get put back!)

So I made my own enquiries. I told nobody. I had a screening with my GP who referred me. The wait list was around 12 months then, for adults and I somehow found out about Right to Choose, whilst exploring private options.

It was available for my daughter, but it was for me. So luckily the NHS covered that. Within around 8 weeks or so, I was diagnosed with Autism, and also referred further for ADHD. Both were confirmed.

It was an emotional time, because everything suddenly made so much sense. But I also had the fear of telling people.

Anyway, enough about me. I also think I’ve just written the intro to a book - watch this space!

So, picking up from where I left off with my daughter.

Secondary school started. Primary had been great and passed on everything. Diagnosis reports, Educational Psychologist report. There had been loads of extra transition sessions to adjust to secondary school. I was confident they would continue to provide the support she had always had, and finally what was working.

Well. That didn’t happen.

If you have a look through my LinkedIn socials you will see all the details.

The school first asked me if I even wanted her on the SEN register.

Erm. Well she has ASD and Dyslexia…..oh….right….so you want to keep her on there then?

Jaw drop.

So began the battle.

No support. Incredible overwhelm. Sensory triggers everywhere. Anxiety overload everywhere.

Lesson content that wasn’t understood.

Homework that was impossible.

Detention if 100% was not achieved on homework.

This is on top of the fact that secondary now starts at age 11. Right when puberty is kicking in.

No friends. Shared changing rooms. No toilet during lessons. No being late to class, regardless of how far away it is. Being bumped around hallways with kids trying to scramble their way through. Being bullied. Crying in class and being sent out.

Getting detention for having a panic attack.

Enough was enough. As I’m writing this, she hasn’t been to school for around 2 months.

They offered token support.

The council refused an EHCNA (Education and Healthcare Needs Assessment). Why? Because the school should be providing what was in the Educational Psychologist report.

Well, they are not. And they told me they don’t funding, nor do they “feel” she needs the support I pushed for.

Went to the Director of Childrens Services. Complained to the Governors at the school.

Director of childrens services responded with “the school should be supporting the child with what is needed”.

The school still haven’t completed their investigation, which is now overdue.

I’ve gone round the houses (so to speak) trying to source alternative options. I can’t afford a 65k a year private Autism school.

Some online options look good but require council approval.

Some are £9,000 per term. Also unaffordable.

So we are in limbo.

Like many others it seems.

This is just a small part of my story. I could go on about my work experiences and the challenges I’ve had myself. But I really think I will save that for a book!

Thanks for the inspiration readers!

But this is why NEuRDiverse was born. To provide a single place that pulls the resources together from all those Neurodivergent conditions. It provides community. Support. Information. A range of resources.

We have big ambitions and we need memberships, Sponsors, Funders and Partners to keep this mission alive.

We want to provide mental health support for individuals and families

We want to close the gap on waiting lists by working with the NHS on shared care agreements and fund private assessments where Right to Choose isn’t feasible

Our biggest ambition is to provide better education for children:

Firstly for those stuck in limbo

But also for all children.

We will push Government for change, Because school uniform requirements should cost £700. They shouldn’t tell children they can’t wear jumpers in winter, or that they can’t go to the toilet, or get a drink of water!

The curriculum needs major revision, and teachers need some serious education. The world is moving on, but education has not moved with it.

That is why I’m here. And that is why I need your support. So please join us. Your membership funds our services.

If you are looking to join as a partner or corporate member, then please get in touch. We would love to hear from you.

Sherry x