Written by Samantha Lade, DonateToday
Published: Monday, 2nd April 2018

'He was terrified of everyday life': After her son was diagnosed with autism, this inspirational mum took action and set up her own trailblazing charity

Toby Henderson Trust

As a toddler, Toby was bubbly and outgoing. But by the age of 3, Toby was petrified of the world around him. He was later diagnosed with autism. Shocked at how little help was 'out there', Toby's mum was desperate to do something to help her son. This World Autism Day, Lesley Henderson – Founder of The Toby Henderson Trust – is sharing her incredible story.

'Terrified of Life'

Lesley Henderson admits that she knew 'nothing' about autism before her fourth son was born.

'I also had absolutely no concerns about Toby at all when he was born,' recalls Toby's mother Lesley. 'I had four boys – two quieter lads, and two much more verbal and socially outgoing. Toby was one of the latter until he was about 2 and a half.

'And then the world just fell around him, really.'

By the age of three, the once bubbly Toby became very withdrawn, not smiling as often and eventually becoming so frustrated with his speech, that he gave up talking.

'One time I remember him sitting for hours under the dining room table just staring at his hands,' recalls Lesley. 'He looked like a little depressed person.'

His withdrawals were noticeable – Toby was suddenly reluctant to take a bath, go and play in the garden, or even step outside the back door.

'He could no longer make any sense of the world around him, and he was just terrified of everyday life,' says Lesley.

It's estimated that about 1 in every 100 people in the UK has Autism (ASD). 

- NHS

A Learning Curve

After visiting the family doctor, it became apparent for the first time that Toby might be on the autism spectrum. But receiving a formal diagnosis was a long and tiring process.

'I'd gotten to the point where daily life was so intolerable and so undoable that I really didn't care what the word was or what it was called,' admits Lesley. 

'All I wanted to know was how to help him – you just feel so helpless as time slips away.'

But eventually, the diagnosis came: Toby was indeed living with autism.

Lesley's son was isolated, frightened and bewildered – but a frantic year of searching for information and support within the North East region only left the family feeling deflated and shattered. No real help was available anywhere.

Toby could no longer make sense of the world around him

It was only by coincidence, when Lesley was watching a BBC programme, that she learned about The Son-Rise Program at the Autism Treatment Center of America.

The Center taught an early intervention approach for children with autism that could be learnt and brought back home. 

From then on, Lesley knew that she had to get over to America any way that she could.

New Beginnings

Pictured: Lesley and Toby Henderson

One of the main obstacles of the trip was the estimated cost of £10,000.

But incredibly, the Henderson family managed to fundraise the money, and were able to spend 4 life-changing days out in America. It was the positive response to this fundraising that actually gave Lesley the initial idea to start a charity when home.

'Once we got the £10,000, I started to think: 'These people are willing to help'.'

She continues: 'I thought, I need to share this information I've learned in America, because not everyone can get hold of this sort of money.'

After training up a team of volunteers, it was official: The Toby Henderson Trust was born.

As the only charity in the North East focused on delivering life-changing early intervention with autistic children, the services offered at the Toby Henderson House in Bedlington, Northumberland are plentiful: structured teaching, music therapy, psychotherapy and a range of workshops are all available.

Not only are the children and young adults living with autism able to access these services, but parents, carers and grandparents who are struggling are also able to access these.

There's even a group – 'Sibling Superstars' – set up for the brothers and sisters of those with autism, to ensure no one feels isolated or alone.

"We see a lot of bullying and self-harm that goes on with the older children"

- Lesley Henderson

The Importance of Awareness

Even today, some 20 years since the charity's founding, Lesley says she cannot believe the vast differences that can be displayed by children across the autism spectrum.

'I think our referral criteria is, and always has been, if we feel we can help, we will,' explains Lesley. 'You don't know what's going to walk in the door.

'Sometimes it's a good starting point to have somebody listen to you who really understands. I think every family deals with it in a different way.'

When asked about her experiences of prejudice or discrimination against Toby, Lesley speaks candidly: 'Sadly, I can cite many.'

She recalls an incident when Toby, out of habit, poured the end of his milkshake on the floor in a fast-food restaurant – only to have a lady pull her older mother away calling Toby disgusting and horrible. 

Other occurrences include Lesley receiving rude comments about Toby's lack of facial expression, with her son being called 'vacant' and 'ignorant', amongst other names.

Never Giving Up

But this World Autism Day 2018, Lesley is sharing her story in a bid to raise awareness around autism and some of the attitudes towards the condition.

'I completely understand that it can be a misunderstanding; a non-awareness that this person may be different, because often, this is such a hidden disability.

'You just want people to sort of stop and look, and maybe look again, and then consider that there might be another reason why this is happening.'

But Lesley, ever the inspiration, is full of hope for the future. Her Bedlington centre is going from strength to strength, with staff increasingly being invited to local schools to train their staff up.

 As for Toby? Against the doctor's initial beliefs, today he is living independently with 24-hour care and support. He lives with another young man, and the pair enjoy long walks in the country and share a love for nature.

Lesley's final message to any parents feeling at a loss is clear: 'Never give up, and never give in.'

'Toby's taught me such a lot. The smallest achievement can be the most massive achievement. 

'You can spend an awful lot of time worrying about the past and the future. But, the most important thing is the here and now. That's the gift. That's why they call it the present.'

The Toby Henderson Trust have just been awarded a $60,000 grant from MSD Cramlington, and launched their Support Through Interactive Play project this past Saturday.