MELTDOWNS, suicidal thoughts and relation-ship struggles had led these three parents to wonder if there was something “wrong” with them.
But it was only after their children were diagnosed with autism that they too realised they are on the spectrum.
The lifelong development disability affects 700,000 people in the UK and the majority of cases are detected in childhood and more often in boys.
But some experts believe there are thousands of women living undiagnosed.
Christine McGuinness, 33, wife of TV’s Paddy McGuinness, was confirmed as autistic earlier this year — just like her three children, twins Penelope and Leo, who are eight, and five-year-old Felicity.
And TV presenter Melanie Sykes, 51, whose son Valentino, 17, is autistic, said she “celebrated” her own recent diagnosis.
Here, Natasha Harding and Sam Carlisle speak to three parents who discovered they were autistic later in life
Heather Tingle, 44, lives in Sheffield with her 11-year-old daughter Emily, who is also autistic.
Heather, who runs her own decluttering business, says the diagnosis she received in May last year has been life-changing.
She says: “Emily received her diagnosis when she was six, and while she was being assessed, the paediatrician asked me how long I’d known I was autistic.
“I laughed at first and said, ‘Oh, I’m not autistic’.
"But then I left the room thinking, ‘Oh my God, I’m autistic too’. Why didn’t I realise?
"Although, initially, her words felt like a bolt from the blue, everything finally made sense.
“I realised why I find socialising and new places exhausting, why I need structure and routine, and why I found small talk a challenge.
“I did a lot of research over the next few years before I went for my own assessment, because having the diagnosis confirmed felt like a really big deal and I wanted to be totally sure in my own mind.
“I was 43 when I went for my own assessment and it’s been life-changing.
"There have been times in my life that have been so hard mentally that I feel incredibly grateful I’m still alive.
“Growing up was horrendous.
"Although I had wonderful friends and family, I always felt like an outsider and as though everything I did and said was wrong.
“I had a breakdown at university as it was just too much. I was diagnosed with depression, so I was on medication for five years.
“In retrospect, it was a misdiagnosis. I believe now I was actually suffering autistic burnout, a type of fatigue that affects autistic people living in a world designed for neuro-typical people.
“The things that helped were time, understanding myself better and putting coping strategies in place.
“All of the signs of being autistic were there, such as the fact I was so easily overwhelmed, struggled socially, had sensory issues and didn’t like crowds, but nobody was connecting the dots because I have good eye contact and hold down a job.
"Some things need to change so people, who are masking, are picked up.
I left the room thinking, ‘Oh my God, I’m autistic too’. Why didn’t I realise?
"All children should be given some kind of assessment at school.
"Since my diagnosis, I’ve stopped doing the things I know I’m going to struggle with.
“I spent so much of my life feeling like a failed neuro-typical person, but now I feel like a successful autistic person.”
Engineer Robert Amey, 48, from Sittingbourne, in Kent, is married to Lauren, 37, a health visitor.
The couple have three children, Chloe, 18, Jessica, 12, and ten-year-old George.
Jessica was diagnosed when she was nine and George when he was ten.
Robert was diagnosed in January last year.
He says: “After Jessica was diagnosed three years ago, my wife said she thought I was autistic too.
“I hadn’t shared the concerns she’d had about Jessica, because I related to her and assumed she was fine — she was just like me.
"But after her diagnosis, we went on a parenting course where I learnt more about autism and it dawned on me that all the things that were discussed, including differences socially, applied to me, too.
“I’ve always felt different, and remember saying to my mum when I was in junior school that I wasn’t like everyone else, but I didn’t know why.
"I’ve lost countless friends over the years because I can be overly opinionated and stuck in my ways.
I’ve always felt different, and remember saying to my mum when I was in junior school that I wasn’t like everyone else, but I didn’t know why.
"The diagnosis has helped us as a family so much. I finally understand myself.
"I feel more confident in my abilities and realise why being an engineer comes naturally while expressing my feelings is a struggle.
“Knowing I’m autistic means I’ve been able to put things in place, which has helped.
"If I feel overwhelmed I know I can retreat to the cabin in the garden, which is my safe space where I can be alone.
“I’m so thankful that I took the plunge and was assessed.
“It’s helped my relationship with Lauren, too.
"She’s more accepting of me now.
"She understands that there are things I’ll always find more challenging than her, but she gets it and it means that I feel more relaxed with who I am.”
Stay-at-home mum Nikki Hughes, 34, lives in Mitcham, Surrey, with husband Michael, 34, who is also her carer, and their three sons, Malakye, 17, Jayden, 12, and Nikolai, six.
"Her two youngest boys are both autistic and Nikki was diagnosed at 31.
She says: “I first realised I might be autistic when I went to autism parenting classes.
"Nikolai was diagnosed aged two and I was sent on a course to teach me to manage his symptoms.
It was a huge relief to understand why my life had felt a struggle.
“When the teacher listed typical autistic traits like talking on the same subject for 30 minutes, spinning around on a chair for ages or avoiding eye contact — I couldn’t understand why they were different as I did them all myself.
“I asked my GP to refer me for an assessment.
"I filled in forms and had an interview with a psychologist and, aged 31, I was diagnosed.
"In some of the areas you would have qualified as autistic with a score of ten – I was scoring 25. It was a huge relief to understand why my life had felt a struggle.
"But later I felt angry I had been left to struggle for so long with no one noticing.
“I had difficulty with friendships and relation-ships. I had felt suicidal many times — I felt so lonely and like I couldn’t keep up with all life demanded without knowing why.
“I felt like a failure as a human being, when in fact my brain just works differently.
“At school, I’d have meltdowns because the noise of the classroom was too much. I’d get put into isolation because I could get so angry. But I enjoyed that because it was quiet.
“Melanie said she had trust issues and I can see why. I couldn’t read people and took others at face value. If they were nice to my face then whispering behind my back, I didn’t notice. It was hurtful when someone told me not to trust them.
“With boys, I felt I had to please them – I didn’t understand I could say no, that there was a concept of consent.
"I met my husband Michael at school when we were both 15. He understood me.
“Being mum to my autistic sons comes easily as they communicate in the same way.
"But with Malakye, it’s harder.
"He thinks differently. When he’s upset I leave him because I would want to be alone, when in fact he needs a hug. I’m learning, though.
“I’m proud to be autistic now. I have a genuine difference rather than being ‘Nikki just being Nikki’.”
‘Being told can be life-changing’
TIM NICHOLLS, head of policy at the National Autistic Society, says:
“Autistic people might find social situations difficult, unexpected changes unsettling or have sensory sensitivities.
“These things can be overwhelming and autistic people can experience a meltdown, or shut down, where they momentarily lose control and have to ‘reset’ to be able to face things again.
"Getting a diagnosis can be life-changing.
"Things that they might have struggled with may suddenly make more sense.
"It helps people realise who they really are, which is very important – especially for people who may have felt they don’t fit in.
“It can be in times of difficulty that autistic people struggle, which is often when they realise they could be autistic.
“There is more awareness of autism, so we’re seeing more people put themselves forward for a diagnosis.
"They should be offered post-diagnostic support, which are sessions to help unpick what a diagnosis means for them.
“They might want to discuss it with their employer to see if changes can be made to their jobs .
“It might be a process of thinking, these are the things I am sensitive to – how can I avoid them or have techniques to deal with them?”
- Visit autism.org.uk for more advice and guidance.
Parents miss £434m funding
THE Sun, together with the Disabled Children’s Partnership, launched the Give It Back campaign in June 2019 to demand that the Government reinstates crucial funding for social care and disabled children.
Hundreds of thousands of families with disabled kids are desperately struggling because of a lack of Government support for services such as respite care and vital equipment.
An astonishing £434million has been cut from council budgets for this purpose over the past decade. We insist they give it back.
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