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A camouflaged condition

By Lawrence Saunders

With more boys diagnosed as autistic than girls, it’s generally believed that females are simply less likely to have autism spectrum condition (ASC).

However studies have increasingly highlighted the difficulties in identifying ASC in girls, which can mean many females are left undiagnosed.

With help from Micah Grimshaw, one of the North West’s leading school-based autism experts, Educate looks to uncover why this is the case.

For a child recognised as having ASC, navigating the education system can be difficult. But for a student with an undiagnosed condition, it can be especially tough.

With males diagnosed at a rate as high as 16:1 to females but recent research suggesting that the true ratio could be nearer to 3:1, it stands to reason that thousands of UK schoolgirls are not getting the vital support they need.

There is no straightforward answer to why so many autistic girls and women evade a diagnosis, but academics broadly agree that one major reason has to do with how females with the condition present.

So-called typical signs of an ASC which may be quickly identified in young boys, such as difficulties with social communication and/or repetitive behaviour, routines and activities, can be missed or not displayed as consistently, if at all, by girls.

Autistic girls can outwardly appear very sociable, and any repetitive actions can be less familiar when put up against traditionally accepted autistic traits.

“If someone was to go on incessantly about pylons or raincoats, the little autism flag would go up in your brain,” says Micah Grimshaw, head of autism research and development at Abbot’s Lea School in Woolton, Liverpool.

“But if a teenage girl was to go on and on about Justin Bieber, you wouldn’t necessarily think that was an autistic trait. “There are different theories, but with a lot of girls their autistic traits are not picked up as autistic traits.

“The key message to get across is that it’s not the type of interest but the intensity of it.”

Micah is uniquely placed to discuss the issue of girls with ASC, and particularly late diagnoses.

Her younger sister discovered that she had ASC at the age of nine. Before that point Micah believed she merely possessed a vivid imagination and strong interest in her older sibling’s vocation.

However, her fascination with teaching was in fact an intense interest which, had it been in cars or trains, would have more than likely been picked up as an autistic trait sooner.

“Looking back, if my sister had friends round to ‘play school’ and she was the teacher and her friends wanted to do something different, it would trigger quite a crisis moment,” adds Micah.

She explains that experts are now discovering autistic girls are accomplished at learning conversational phrases and when allied with echolalia (repetition of words or phrases), it can appear they are capable of holding a conversation – but it’s not coming intuitively.

Social masking or camouflaging abilities like these allow autistic girls to conceal their condition to a certain degree and ‘fit in’ – meaning an autism diagnosis is sometimes not made until later life, if ever.

Historically, research into ASC was predominantly focused on boys; so much so that at one point it was believed that Asperger’s syndrome, a form of autism, didn’t affect girls.

More recent studies have given professionals a much better understanding of gender differences in autism spectrum disorders, and Micah has witnessed a huge spike in diagnoses for girls and women during the last year or two.

As the subject of girls and autism continued to gain greater attention, Micah began visiting schools across Liverpool to offer her expert guidance on how to support pupils with the condition.

The first major workshop Micah ran on girls with autism took place during a Merseyside SLD/CLD inset day in 2017. A total of 74 people showed up – each one a woman.

“My headteacher at the time laughed and said ‘it’s almost like the male staff think it’s not something for them because it’s about girls’”, says Micah.

Most recently in March 2019, Micah hosted a workshop at Abbot’s Lea attended by staff from mainstream primary and secondary schools.

Following the seminar, one of the school’s which took part, Archbishop Blanch, asked Micah and her team to devise an action plan to improve its support for girls with ASC.

On this topic of inclusivity, Micah says one of the most important provisions for any school to offer autistic students, male or female, is somewhere they can be on their own and feel safe.

“We shouldn’t assume that every school has those places,” says Micah.

“Are schools thinking about what options there are during that unstructured downtime?

“We know that when there is a period of time which is unstructured it can be quite difficult for someone who is autistic.

“In terms of environmental and inclusivity, it’s about looking at simple strategies for the classroom which will help everyone but also thinking about whether there are additional spaces in school which can be made into quiet spaces or breakout areas.”

Whilst Micah does point out where some mainstream schools can improve, she is also pleased to report that many of the schools she has visited are already doing “a brilliant job”.

“Some of the best practice I’ve seen have been schools which are genuinely challenging the status quo and thinking outside of the box,” she says.

“The schools [which are doing the best] are talking with the children about neurodiversity and about differences.”

One of the schools in Liverpool that Micah believes “doesn’t realise how brilliant it really is”, is Our Lady and St Swithin’s Catholic Primary School.

Initiatives at the Croxteth school include a ‘relaxation zone’ where children come to check-in with their emotions at the start of the day, and a special ‘social time’ that gives a small group of children the chance to build up their social skills away from the pressures and stresses of the mainstream classroom environment.

“For those who need day-to-day support it’s about getting that right mix of help with their personal, social and emotional development (PSED) whilst still giving them the chance to reach their potential,” says Mrs Sandra Hamilton, special educational needs and disabilities coordinator (SENDCo) at Our Lady and St Swithin’s.

“[In the relaxation zone] they say whether they are ready to learn or whether they’re unhappy – this is our chance to talk about how they’re feeling.

“Children with the condition want to be happy, they want to be understood and they want to be at the centre of the learning.”

Whilst Sandra unsurprisingly wouldn’t turn down extra funding, she does believe it’s possible for mainstream schools to become more inclusive on a small budget.

“There are no spaces [at special schools] anyway so mainstream schools have to become more inclusive,” she adds.

“A lot of it is in the planning stage but just getting the support from other people in your school is really important.

“There’s a lot of great stuff out there which doesn’t cost that much but you do have to change your mindset and get people to go with you because the kids will – they just want to feel like they belong, in the mainstream or not.”

Girls and ASC Key Points

• Five times as many males as females are diagnosed with ASC

• Girls with ASC don’t always display ‘typical’ autistic traits

• It’s not the type of interest but the intensity of it

• Autistic girls can outwardly appear very sociable

• Girls may be better than boys at masking their ASC symptoms

For more information about the topic of girls and autism, contact Micah at micah.grimshaw@abbotsleaschool.co.uk

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