Neurodiversity Celebration Week: Jo's Story

Hi, I’m Jo and I head up the Network Services Procurement Team which includes IT, Nuclear, and TIS. I specialise in procurement for major Software and Engineering transformation projects, but I also have wide general procurement category experience.

My expectations of motherhood were thrown upside down from when my son was born. He lost oxygen at birth, and this led to some of the neuropathways in his brain becoming damaged.

I noticed quickly that he wasn’t reaching milestones for walking and talking and he was in and out of hospital from a fairly young age for tests. He would often be awake and distraught for hours but then once asleep it would take him a long time to become fully awake. He would sleepwalk a lot and cover his ears and bang his head on the floor or the walls. That was really distressing and at one point the neurologist had him wearing a bike helmet in the house which drew even more attention and staring from people.

It was a very difficult time for all of us in the family as we couldn’t get a diagnosis as he was still so young, and his brain scans were coming back clear.

He soon became our ‘Rain Man’. He had names for every Lego character (he had about 85 at the time) and knew which hat and weapon belonged to each one, lined up cars in colour order, and knew the names of all the people and what they had achieved in the Guinness Book of World Records. He has always had a fascination with heights and weights and random facts.

Eventually in primary school he was diagnosed with high functioning Autism and ADHD and referred to CAMHS (Children and Adolescent Mental Health Services). At that point, while it wasn’t a surprise, the diagnosis made us worry about his future. Would he ever get a job? Would he have a family?

There’s a very famous poem called "Welcome To Holland" by Emily Perl Kingsley which sums up this period very well. In the poem she describes the experience of raising a child with a disability to try and help people who haven’t shared that unique experience to understand it.

Tom struggles to look people in the eye when in conversation. He’s learnt as he’s grown up that this is something he needs to do but it doesn’t come naturally to him. He’s also brutally honest because his world is very black and white. For example, if you’ve put on a few pounds be warned, he’s going to tell you! Likewise, if he doesn’t like something you’re doing, he’ll let you know. As he’s now an adult, people often find this very rude but it’s just part of his world. Autistic children are often classed as ‘naughty’ or ‘mischievous’ and the bluntness is easily forgiven. Not so much when they move into adulthood.

He also loves his phone and headphones. He’s rarely without headphones in his ears and it has caused many a heated discussion when friends and wider family have come over for dinner or want to have a conversation with him. He also doesn’t like a lot of noise, so noisy environments aren’t great and he can be a little accident prone and awkward but that’s part of his condition.

I want to tell people to not be put off by his honesty or frankness. He’s not good at ‘transitions’ so he likes to be in the same place to work with the same people.

Tom has a photographic memory and so if you need to know exactly what happened in a particular situation, he can tell you down to the finest detail. He’s extremely reliable and as long as he has a plan, there’ll be no deviating from it. He recently built the Lego Eiffel tower from scratch which has over 10,000 pieces, so he’s methodical and very disciplined.

He’s also very kind and loyal and great with older and younger age groups. My best friend has two autistic sons that are much younger, and he has been a big support to them and they idolise him.

Tom likes being on his own and can seem in his ‘own world’ but he also likes talking about things that he’s interested in. As he’s now 23 that tends to be motorbikes and tattoos. He does seem different when you meet him and often the only people that take the time to talk to him have children who are also on the Autism spectrum and recognise quickly that he’s on the spectrum.

At the age of 23 Tom now has a full-time job in the Prison Service which he loves, especially nights when it’s very quiet and regimented.

For a long time when he was younger, we didn’t think that would be possible. If I had any advice, it’s to ask colleagues to be kind and inclusive – not only to those with this condition but to the families supporting them as it’s a very difficult and challenging journey. To families with young neurodiverse children, my advice is keep going. It’s not the journey you probably planned, it’s just a different path.