Neurodiversity Celebration Week: Jemma's Story

I’m Jemma, Commercial Manager in Telent’s Legal and Commercial Team. I’ve been with Telent for nearly nine years now, negotiating contracts and helping teams with in-life project issues for Transport and Network Services.

I’ve been on the fringes of neurodiversity for a while; I have a nephew and brother-in-law who are both autistic. However, I didn’t come to properly understand neurodiversity until I had my first child in 2016, a little girl we named Chloe. She was different from the get-go as she didn’t sleep a wink…. ever! I’d always noticed she was less social than my friends’ babies, always watching – never participating. She was happy so I thought nothing of it.

In the early year’s rooms at nursery, she showed that she was very smart, completing puzzles other children couldn’t do and reciting song lyrics after hearing them a couple of times. I remember she had the staff in stitches singing ‘Mistletoe and Wine’ to them…in June! As it turned out she had a fantastic memory (and still does to this day so I have to be careful what I promise!).

Eventually she moved to the next group and that’s where the Special Educational Needs and Disabilities Coordinator (SENDCo) was stationed. She noticed several things in Chloe that indicated she may be on the autistic spectrum, including her amazing brain, not registering when you say her name, not participating in social activities, biting, and scariest of all trying to jump down the stairs all the time. She had no sense (and still doesn’t to a lesser extent) of danger whatsoever.

So, the nursery started the process for us. They filled out the first form we ever received, and it was so negative, listing everything Chloe couldn’t do and what issues this caused for others around her. We were shocked as her behaviour had never been described to us like it was on the form. It was the first of many we’ve had to sit and read through.

The process is long, and we didn’t find it parent-friendly. We were asked repeatedly if we were sure we wanted Chloe to be tested for autism. It felt like a dirty word. We’d already had to start fighting for Chloe and she was only two and half years old.

Chloe didn’t start her official tests until the Covid pandemic was in full swing in June 2021. It was a bizarre time, and all the tests were done on Zoom. She played with her dinosaurs for the entire time and didn’t interact with the doctor. The doctor only got a response when she showed her son’s dinosaurs to Chloe. She was four and a half when she was finally diagnosed after a two-year wait.

At the same time as the autism tests were going on, my husband and I were trying to secure an Education Health and Care Plan (EHCP) as Chloe was due to go to school that September.

We had numerous experts say that Chloe needed an EHCP in place. The Local Authority’s response recognised that Chloe needed help, but we were told to come back later. I wasn’t having that and took it straight to mediation. By this time, Chloe had now entered the school system without the EHCP in place.

Mediation was straight forward but filled with more of the same tedious questions. Frustratingly the Local Authority rejected our application again. I wasn’t having that either, so I took it to Tribunal. After going before a Judge, the Local Authority gave in and assessed Chloe’s needs. It took three attempts to get the help we (and they) knew Chloe needed. Sadly, this is not an unusual occurrence, but the hardest part was knowing Chloe had spent a whole term without the proper support she required.

Now that everything is in place, it’s much easier. Chloe has the help she needs, including a one-to-one Teaching Assistant who is an absolute angel – I hope she realises what an impact she’s had on our girl, because her help has been invaluable.

There are a lot of day-to-day things that Chloe has to navigate which come as second nature to us now. Loud noises are unavoidable, but hand-dryers, hairdryers, vacuums all provide Chloe with difficulties. Chloe wears ear defenders when we go to public toilets, and we also have a RADAR key for when it gets too much for her. She screams like she’s in pain when she hears certain sounds, but people just look at her like she’s a naughty child.

There are a variety of other everyday things that Chloe needs help with like dressing, reminders to eat, hair care, and understanding dangers of the road. She also craves routine, so social occasions can be very daunting for her. When she’s entering a social situation which is out of her routine she tends to jump up and down a lot and it’s harder for her to process what has been said to her.

She may not register that you’ve spoken to her for a good four or five minutes. It’s not that she’s not listening, it’s that her body can’t process the information right away when she’s in a situation that’s new or not part of her routine. This is probably the challenge that most people will see, but the challenge that is least understood. Again, she’d be labelled as a naughty child by many.

There are so many positives to being neurodiverse that we see within Chloe. The main thing for me is her love for her special interests. A lot of autistic people have a subject that they can talk, learn, collect things about and just never tire of it. I have learnt so much about dinosaurs since having the privilege to know Chloe it’s unbelievable. Her passion for animals and trying to save the planet is something to be admired. We take a litter picker on most of our walks, so she can take away dangers and keep animals safe.

Her incredible memory has only got better over time, and it completely fascinates me how she can retain so much information. Alongside this is her deep focus and observational skills. If she is focused on a task, she must see it through to the end. All are common autistic traits which never seem to be highlighted.

She sees the world through a different lens and it helps and grows our view of the world as she’s educating us all the time. She’s also more accepting of people who are different and has a very strong sense of justice which always makes her want to help people and animals.

This is quite a common autistic trait, most neurodivergent people are strongly focused on social justice. There’s no judgment with Chloe, she accepts you for who you are.

A lot of kids with autism often live in the here and now. They don’t dwell on the past or the future. They enjoy things as they happen. A rather freeing trait to have!

Chloe’s is just one autistic story and long may it continue. There’s a saying: “If you’ve met one autistic person, you’ve met one autistic person.” It means don’t paint everyone with the same brush. Every autistic journey is beautiful and unique.

There’s a lot we can gain from including these wonderful minds instead of excluding them and making them feel like their differences are a bad thing. Always, be kind.

If you’d like to learn more about autism from an autistic perspective, I’d recommend these books as a starting point:

• The Reason I Jump – Naoki Higashida
• The Explosive Child – Ross W Greene
• Sincerely, Your Autistic Child – Emily Paige Ballou
• Odd Girl Out – Laura James
• I Will Die on This Hill – Meghan Ashburn and Jules Edwards