New Stratford-based charity launched to help autistic girls
A NEW national charity is being launched in Stratford with the aim of helping autistic girls get a correct – and early – diagnosis.
Autistic Girls Network seeks to raise awareness about how girls can be likely to present, since the delay in recognising young girls as autistic can eventually lead to severe mental health issues in adolescence and adulthood.
Cathy Wassell, pictured, CEO at Autistic Girls Network, which is based in Stratford and will run regular group meetings in town, told the Herald: “The topic of autism and girls has been much discussed in recent years, but while many are aware that girls may present differently, there is widespread misunderstanding about exactly how. This is a huge issue because autistic girls – and those who present in the same way – are being missed and outcomes for autistic females are particularly poor.
“Official statistics still say that one in 100 people in the UK are autistic, but these figures are out of date. Official US figures now say one in 44 but this is based on 8-year-olds, and as we know all too well at Autistic Girls Network, many people are diagnosed as autistic after the age of eight.
“Official figures in Northern Ireland are one in 22. So, all we can really say is there are more than you think. This is not because autism has become more prevalent, but it has become better recognised.”
However, Cathy explained that girls in the UK are still being diagnosed autistic, on average, up to six years later than boys. And even getting an autism assessment can take years.
“Given what we are coming to understand about the damage a late diagnosis and subsequent camouflaging of autistic traits can do to an autistic person’s mental health, confidence and self-esteem, this is a statistic which needs to change fast.”
Cathy said there remain many issues which can lead to misdiagnosis in autism and some autistic traits can be “camouflaged and internalised to help a child fit in with their peers, which can be a conscious or unconscious decision to avoid the stigma of being autistic”.
But this masking, says Cathy, comes at a high cost in terms of mental health and can see people reach their breaking point.
Often it’s when the child is at school that autistic traits will become prevalent, but it can work both ways. Autistic children who present in an external way will be noticed and referred early, partially because they are causing disruption in school, and the school is invested in helping that disruption to stop.
However, autistic children who present in an internal way tend to behave much more passively and be ignored. They are not causing a disruption so the added incentive is not there for them to be referred and frequently the signs are not spotted until mental health has deteriorated to such a point that behaviour becomes more externalised and disruptive – albeit disruptive in a different way.
“Until we start to recognise autistic children – who present in an internalised way while they are still at primary school or possibly before – we won’t break this cycle of lack of knowledge about internalised presentations and these people are not appearing in research because they are not yet diagnosed. New research says autistic girls take six years longer to get a diagnosis than boys,” said Cathy.
The Autistic Girls Network has identified several key areas where further and more considered checks will help deliver a more accurate diagnosis. However, much of this has to be based on continuous study rather than relying on what’s been accumulated in the past because the diagnostic process made it less likely to help girls, especially when there was no intellectual disability present.
“The assessment tools used for diagnosis and research in the field of autism have almost always been developed from research using predominantly male samples,” Cathy said. “Girls and women need to be struggling more than male peers to get a diagnosis and on average it takes two to three years longer.
“In the UK there is a wide geographical difference in how likely girls are to be diagnosed. Some areas have a ratio of one girl to 30 boys. Others one to two. This is not just a statistical anomaly, rather a difference in how diagnostic teams recognise autistic girls. There is research suggesting that more women are referred for diagnosis as adults than men which implies that more girls are being missed.”
According to Cathy, young autistic people can struggle with anxiety, depression and other mental health problems as well as poor self-esteem and this can lead to self-harm, eating disorders or self-medicating with drugs or alcohol.
“There are higher rates of suicide attempts and completed suicide amongst autistic people,” said Cathy. “Autistic girls and women, in particular, are disproportionately represented in these statistics, with a four-times higher risk of suicide attempts than men and these figures don’t account for the vast numbers of those who are undiagnosed. Mental health issues are common in autistic people.”
The impact of being undiagnosed means autistic children find it harder to engage with their education, they may refuse to go to school because of high anxiety levels or struggle to pay attention in a classroom, which impacts their academic achievement. Early diagnosis, Cathy says, can play a vital role in reducing that risk that would help young autistic girls but this will only work if the process is speeded up locally and nationally.
“The waiting time for an autism assessment in Warwickshire currently is five years,” said Cathy. “Research has shown that knowing your identity and feeling connected to a community can help protect against mental ill health.”
Autistic Girls Network runs groups to nurture a “positive autistic identity” for children.
“The Stratford group is open to girls – and those who identify as girls – with a diagnosis or on the pathway to one and will run every other Sunday morning at the Rosebird Centre starting 5th June,” explained Cathy. “However, this group is already over-subscribed showing the huge need for our charity.
“Autistic Girls Network is not a support group but a proactive group looking to effect change nationally.”
For more information visit: /www.facebook.com/groups/AutisticGirlsNetwork.