Delayed autism diagnosis an enormous problem for girls

The prevalence of autism is estimated to be at least three times higher among boys than girls, but whether this is down to biology or bias in diagnosis – or a combination of both – is a matter of some debate.

What is clear is that the likelihood of a later diagnosis is one of the big gender-specific challenges for autistic girls. A recently published UCD study suggests that "the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress".

Entitled "'I just rolled up my sleeves': Mothers' perspectives on raising girls on the autism spectrum", the qualitative research is described by its authors, Karen Fowler and Cliodhna O'Connor, as one of the first studies to illuminate the everyday experience of young girls with autism through the viewpoint of their mothers.

The women describe their autistic daughters as presenting with social challenges and mental health difficulties. Many of the 19 mothers who gave in-depth interviews for the research, published in the international journal Autism, had experienced judgment from other parents and family members, and had mental health struggles themselves.

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“However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women,” say the authors, who conclude that their findings highlight the importance of specific support for autistic girls and their families.

"People talk about how autism is very different in girls than in boys but I think what is going on is that girls are just very different from boys, not that autism is different," says Fiona Ferris, deputy chief executive of the national autism charity AsIAm. She believes the reason girls tend to go undiagnosed longer than boys is because girls may "mask" their behaviour.

Autistic girls can almost take on entire personalities of other people to fit in, she says. “I usually describe it as being a ‘social chameleon’, where you can adapt in any situation you’re in.”

Ferris (34) was in her late teens and had left school before she was diagnosed. At the time, it would have been considered quite unusual. It was a kind of “identity crisis” that led to her diagnosis.

“I think I realised I was struggling a lot in class – not academically but from a sensory perspective: the noise, the lights, the smells, being around people eating and the unpredictability of the social environment. That is what I started to find very difficult, yet felt I wasn’t being challenged academically. The two of them didn’t quite match up.”

Awareness

Nearly two decades later there is much more awareness and we’re told that one in 65 people in the education system has a diagnosis of autism, but there is no gender breakdown of that figure.

How do I tell my child s/he is on the spectrum?

She doesn't recall much about her diagnosis process, at a time when there was less consultation with the individual. Nor does she remember being told she was autistic. "How do I tell my child s/he is on the spectrum?" is something she is frequently asked now, through her work with AsIAm.

“I think the ideal situation is that whenever your child looks back later in life, they should not be able to remember exactly the point they were told because it shouldn’t be this very serious sit-down conversation. It should be something that is totally normalised and brought into everyday life and presented to them in a very positive way, part of their identity.”

Ferris’s own daughter, Katelynn Ferris-Hamilton (11), was diagnosed with autism just before she was two. Although on the spectrum herself, Ferris had not suspected her daughter was too until she was reading online about concerns another mother had about the development of her autistic daughter.

“I could have been reading about Katelynn and was thinking why had I not seen this?” She brought her daughter to their GP the next day and had her diagnosed privately within a month. “I didn’t want to wait – I had seen the benefit of early intervention.”

In hindsight, she says her daughter’s autistic traits were clear “but I wasn’t aware at the time because she was very different to me”. Katelynn was non-verbal – right up to senior infants– whereas she was “too verbal if anything”.

“Katelynn didn’t speak and she didn’t play with toys in a typical way; she would focus on the small detail of them. She would find noise and just being outside the house massively overwhelming.”

Katelynn’s co-ordination and balance were also quite behind for her age but, being a young mother with her first child, Ferris didn’t know what she was looking at.

Today, she says her daughter is “doing fantastically” and she puts that down entirely to the supports she received as a young child, when the brain is at its most malleable and everything is learned quicker. Autistic girls who go under the radar until considerably older miss out on such vital early intervention.

For the child to learn in a positive way that they have autism and that they are okay, they're not 'weird'

Late diagnosis is an "enormous problem" for girls, says psychologist Davida Hartman, co-director of the Children's Clinic in Sandycove, Co Dublin. It's not just the access to services that diagnosis brings, but also what's critical, she explains, is the greater understanding that comes with it, both for the individual concerned and those around them.

Hartman notes that at the adult diagnostic service she set up recently, 90 per of clients are women. "For me one of the most important things around diagnosis is for somebody to develop self-understanding – it is key. For the child to learn in a positive way that they have autism and that they are okay, they're not 'weird'."

There are various theories around why girls tend to be diagnosed later than boys. In addition to greater “masking” by girls, Hartman believes another factor is gender bias, or at least a lack of understanding among some professionals such as GPs and teachers.

“Girls can be better at sitting still in their desks and doing their work but the problem is at what cost, because they are masking so much anxiety, holding it all in.”

Eventually they are liable to crack because they need the movement breaks, the support and the understanding just as much as the boys. Concern about a daughter’s anxiety is the most common reason parents contact Hartman’s clinic seeking a diagnosis. “The girls generally come in with anxiety, social anxiety, low mood. For boys it might be school refusal, acting out, difficulties with peers. They are also anxious but I think the anxiety looks a bit different.”

A lot of the girls’ anxiety is about feeling they’re not fitting in and not being accepted. “Pressure to fit in leads to poor mental health,” says Hartman, who has written several books about young people on the autism spectrum, including The Growing Up Guide for Girls: What girls on the autism spectrum need to know!

The UCD study notes that every mother talked of their daughter having experienced debilitating anxiety. “This typically manifested in compulsive behaviours like counting, hoarding and tics, with a few instances of panic attacks and paranoid delusions.”

There have been “massive improvements” in awareness of autism, Hartman acknowledges, but that is not to say there aren’t many children who are struggling. “We recognise autism much more, which is brilliant, but we are still expecting the autistic person to change.”

Inclusive

We tend to think they need to learn social skills, to learn friendship skills, but the next step she suggests is that the rest of us become more inclusive. “We need to be more neuro-diverse in how we think about things and how we accept people. We are not quite at that stage but we are getting there.”

Ferris likes to think children generally are more accepting and less likely to bully these days but she knows that is not always the case. “Somebody who is different and perhaps is seen as vulnerable or impressionable and doesn’t get jokes or sarcasm is always going to be seen as an easy target.”

For an autistic girl, the complexities of female friendships are difficult to manage. The study points out that “the school environment is particularly fraught for autistic girls, where peer isolation and bullying can have a detrimental impact on mental health”.

Thinking back to her own schooldays, Ferris remembers a girl falling out with her because she had, apparently, given her a dirty look. “I don’t know what my face is doing half the time; my facial expressions don’t match what I’m thinking and what I’m saying because my brain does not connect those pieces,” she says.

“I think, generally, boys tend to be much more black and white in their interactions and in their friendships than girls, particularly as they get older and puberty kicks in.”

A lot of sarcasm and bitchiness comes with being a teenage girl

Teenage girls start to socialise in a different way and a lot of their interactions are based around what isn’t said. Autistic people tend to accept what is being said at face value, Ferris explains.

“A lot of sarcasm and bitchiness comes with being a teenage girl; that is very difficult to navigate when you are expecting people to say what they mean and mean what they say.” It can be almost easier to be on your own, so you don’t have to cope with unpredictable conversation.

“It’s not about not wanting to interact or not wanting to have friends,” she says. Rather, it’s very stressful talking to somebody when “I don’t know what you’re going to say next, whether you’re being serious or not”.

Among the daughters of the mothers interviewed for the research, half had atypical friendships, preferring the company of boys or younger children. The latter is something Ferris has noticed with Katelynn.

Socially she is quite naive but, academically, probably quite ahead for her age. Ferris believes that having friends who are younger probably help her daughter to control the situation “because they are looking to her to set the parameters and she can say ‘Let’s play this game’”. Whereas with girls her own age, she tends to play in parallel rather than engaging directly.

“Once she is happy I don’t mind but I notice the interactions are a lot richer when she is playing with younger children.”

With the benefit of an early diagnosis for Katelynn, Ferris has found the services to be “good – not amazing but good” and, as a mother, she pushed a lot for them. She also praises her daughter’s teachers for always listening to her as her mother about the best ways to help Katelynn.

It wasn't her I wanted to change; it was everybody else to understand her better

Her concerns for Katelynn change over the years as she grows. When she was non-verbal in school and had sensory processing difficulties, it was recommended she go to a special school and Ferris recalls wondering was life always going to be so difficult for her. “The difficulties are within the environment,” she says. “It wasn’t her I wanted to change; it was everybody else to understand her better.”

Katelynn started in an early intervention class within a primary school when she was three. During her second year there she spent the morning in the special class but attended a mainstream preschool within the same school in the afternoon. “I absolutely think that was the making of her because she got the benefit of interacting with lots of different children – not just children with high support needs.”

Relationships

As Katelynn gets older, it is anxiety and understanding relationships that her mother worries about. But it can be hard to predict what she is, and isn’t, going to struggle with.

They moved across the country in July “and she took it like water off a duck’s back”. Yet, the day before we spoke, they had been in a shop buying a new coat and Katelynn broke down crying because she couldn’t make a decision between the two. “It was the intense empathy,” Ferris says. “She actually felt sorry for the coat she wasn’t taking.”

Parents everywhere worry about their teenage girls but those on the autism spectrum may be particularly vulnerable, as they tend to be naturally trusting of people. This is a concern she has for Katelynn. “She may learn along the way how to read people better or people might just become more supportive and nicer as society progresses. I wouldn’t put her in the category of being a vulnerable person but she does have traits that perhaps make her more vulnerable than a peer of the same age.”

The thought of her daughter using social media “puts the fear of God into me”, Ferris admits. Children her age are using it and Katelynn does ask about it. “It’s a challenge I don’t think she needs on her shoulders at the moment.” Much needs to be done worldwide, Ferris suggests, on appropriate online supports for different special needs among vulnerable children and vulnerable adults.

Keeping them away from it is just perpetuating difference. It’s “excluding them from something that is probably very important for their social development, but it’s very scary”.

Although one might think Ferris’s own experiences put her in a better position than most parents to understand her daughter’s challenges, she believes it is her work with AsIAm that has best equipped her to support Katelynn, rather than being an autistic person herself, as she did not always have a positive association with autism.

“Being autistic is a very core part of her identity, which thankfully she is very, very proud of and I have raised her to be that way.” But, she adds, with maternal concern: “I just want her to not put so much pressure on herself.”

Red flags

What are the ‘red flags’ for autism in girls?

For people who have no experience of autism, it can be particularly difficult to recognise it in girls, says psychologist Davida Hartman. But if your daughter seems to be struggling to cope with life, autism is something to consider. Signs include:
- Sensory difficulties: "That's a big red flag," she explains. "If they don't like a lot of noises and sounds and finding their clothes difficult."
- Anxiety
- Struggling with friendships
- Having really strong passions
- Very sensitive, with a strong sense of justice and fairness: a good example of this is Greta Thunberg's intensity and caring for the world.
- Love of routine, gets unduly upset about changed plans.

A very individualised approach is needed in supporting girls on the spectrum, Hartman says, and it is not about “treating the autism”. Rather it is about focusing on what the person is struggling with and helping them with that.

“For me personally, I think the most important thing is them learning about autism, in a very positive way. For anyone to thrive in life, you need to understand yourself and why you’re good at certain things and why you struggle at certain things.”

There are really good books written by and for autistic girls, she adds, and she always recommends reading some of them as a first step.