People say: ‘But your girls don’t look autistic’
Like Greta Thunberg and her sister, both of Nicola Zeid’s daughters are on the autistic spectrum. She explains the unique challenges they face living with an invisible disability
AS Greta Thunberg gave a rousing speech to the UN on climate change, her parents looked on proudly.
But things haven’t always been easy for Malena and Svante.
Both their daughters, Greta, 17, and her younger sister Beata, 15, are on the autistic spectrum.
And raising girls with autism comes with unique challenges.
As a child, Greta was bullied at school and would cry in the toilets at break.
She then stopped eating and became selectively mute. Eventually, she was diagnosed as autistic in her teens by the school psychologist.
“Greta does not have a single characteristic trait of autism or Asperger’s,” said Malena.
When the psychologist told Malena about her suspicions, she thought “either the psychologist is crazy or else we have a gigantic gap in public awareness”. It turned out to be the latter. And Greta is not alone. In fact, the ratio of men to women diagnosed with autism in the UK is about 3:1, according to the National Autistic Society (NAS).
“While everyone is different, girls are often better at masking the traditional signs of autism, making diagnosis harder,” said Carol Povey of the NAS. “In the past, research focused on men and boys. Now we need to increase understanding of autistic women and girls.”
Nicola and Damon Zeid also have two autistic daughters – Annelise, 13, and 10-year-old Tabitha. And they too struggled to get their daughters diagnosed.
Having two autistic girls is “tough but rewarding” said Nicola, 44. “Sometimes I feel as if we’re at rock bottom and then other times, Annelise will do a really amazing drawing and it just blows me away.”
The ups and downs of having two daughters with autism was highlighted at a recent trip to a bowling alley.
“After about five minutes of being in the bowling centre, Annelise was getting fidgety and I could see her anxiety was rising,” said Nicola.
“She turned to me and said, ‘I can’t do this. I don’t like all the people. It’s too noisy, the lights are too bright.’
“Then Tabitha started kicking off because she was upset that one of my friend’s daughters was sitting in her seat. I wondered ‘Why can’t things ever go smoothly?’” Over time, Nicola has learned to brush off the questioning glances she sometimes gets from strangers. She said: “At the beginning, I used to feel really self-conscious but now I don’t care. I know I’m doing the best by my kids and that’s all that really matters.” She believes there is a lack of understanding when it comes to “invisible” conditions such as autism. “When we first told people that the girls had been diagnosed, they would say, ‘But they don’t look autistic’. There is a misconception – people can have hidden disabilities.”
And she knows all too well how the symptoms of autism in girls can be overlooked. She said: “I wouldn’t be surprised if in reality there was a 50/50 split of boys and girls with autism but because the testing is designed for boys, girls don’t hit the markers and go undiagnosed.”
Even when the girls were finally diagnosed, the couple struggled with the lack of support.
“When the doctor gives you a diagnosis, they just hand you a bunch of leaflets and leave you to it,” said Nicola. “There’s no aftercare but, as a family, that’s just the beginning.”
Nicola and Damon had always known there was something different about Annelise. “She was a very anxious child and had multiple meltdowns a day,” said Nicola, of Watford. But it never occurred
to them their daughter might be autistic. “Because we hadn’t had experience with autism, it wasn’t something that came to mind,” Nicola added.
Like Greta, Annelise hated going to school. “The number of pupils made it very noisy and she didn’t always get the understanding she needed from teachers. She’s dyslexic and was struggling in class,” said Nicola. At home, things were also tough. Loud noises and bright lights seemed to make Annelise severely anxious. “Several times a day she’d have a meltdown but we couldn’t understand why,” said Nicola.
“She’d get very angry and shout. She might throw things, and started self-harming. It was a really difficult time because we didn’t understand what was going on and she didn’t either.” The school never suggested that Annelise’s behaviour could be linked to autism.
It wasn’t until she was eight that her Brownie leader took Nicola aside and asked her if she had considered that Annelise could be autistic.
Suddenly everything made sense.
“When I researched girls with autism, the characteristics matched Annelise perfectly. That was my lightbulb moment,” said Nicola.
Since Annelise was approaching secondary school age, Nicola and Damon opted for private testing. And when she was 10, she was diagnosed.
Meanwhile, she hated going to school and begged her parents to let her stay at home. “Every day was hard. I cried myself to sleep loads of times,” said Nicola. At times, Annelise was suicidal. “When she was nine years old, she said she wanted to die,” said Nicola.
“As a parent that’s one of the most heartbreaking things your child can say. It was devastating.”
Annelise continued at her mainstream primary school and went to a secondary school for children with additional needs. Meanwhile, in 2018, Tabitha was also diagnosed.
“Initially, we wondered whether she was copying Annelise and the characteristics of autism – you know what younger sisters are like,” said Nicola. “Then we realised maybe she had autism, too.”
Tabitha’s autism presents differently to Annelise’s.
“I wish people were more aware of how every person with autism is still an individual,” said Nicola. “Although Tabitha is autistic too, she is more rigid than Annelise and is not so accepting of change.
“For example, she has to sit in the same place at the kitchen table in her chair – we’ve marked it with a ‘T’ underneath.
“She finds people she doesn’t know coming into the house extremely stressful, and gets anxious if someone asks her to do something – even simple things like brushing her teeth.
“While Annelise prefers to be alone, Tabitha is bored easily and likes to do after-school activities and having friends over.
“Sometimes the girls get on fantastically and other times Annelise wants to be left alone, whereas Tabitha wants to play with her.”
Now, Annelise is finally getting the care she needs. “It’s taken a good year to settle into the new school but now she has friends and is a totally different person,” said Nicola.
“She’s much happier. She looks forward to school. She’s flourishing and doing so well academically.”
Meanwhile, Tabitha is still at primary school but Nicola and Damon are thinking of enrolling her in the same place as Annelise.
They also have a dog, Lottie, for emotional support for the girls.
“Lottie seems to know when people need a bit of extra support,” said Nicola.
And although life with two autistic daughters is tough, the Zeids wouldn’t change it for the world.
“It might not be an easy life but there are sunny moments and you have to hold on to those,” said Nicola.
“I feel blessed.” INTERVIEW BY ELIZABETH ARCHER
She’d have a meltdown several times a day but we just didn’t know why