Girls with autism – a hidden issue?

Three young girls hanging upside down in a park and laughing

by Stacey Dingwall

At the end of last month, the National Association of Head Teachers (NAHT) held its Big Shout conference in London. The event gathered together school leaders, health and education experts, parents, carers and women on the autistic spectrum with the intention of raising awareness of the ‘underdiagnosis of thousands’ of girls with autism.

Gender difference in diagnosis

The National Autistic Society points to various studies that estimate the ratio of male/female autism diagnosis as being anywhere from 2:1 to 16:1. Last year, the National Association of Special Educational Needs (nasen) published a guide to supporting girls with autism spectrum conditions which states that the ratio is typically regarded as 4:1. The guide notes that this is an average figure, and that the ratio increases to 10:1 among intellectually able individuals with autism spectrum disorder (ASD), and shrinks to 2:1 for groups with ASD and moderate to severe learning disabilities.

Nasen suggests that this gender difference has only recently been questioned, and points to several possible explanations for the variation:

  • Gender bias in existing screening and referral processes, diagnostic criteria and tools
  • Protective and compensatory factors in females
  • Different gender-specific autism spectrum condition (ASC) profiles

Nasen points to research going back as far as 1944 which found that while the girls who took part in the research displayed signs that were “reminiscent of autism”, they were not as “fully formed” as those seen in the boys.

As noted by Francesca Happé of the MRC Social, Genetic and Developmental Psychiatry Centre at King’s College London, diagnostic systems, as well as research studies and stereotypes of ASD, are still based on the experiences of males to this day. Despite evidence which indicates differences between girls’ and boys’ social-communication skills – an important factor in the diagnosis of ASD – girls are being assessed using a system that is biased towards the opposite gender.

The only specialist state school in the UK

Limpsfield Grange school in Surrey is the only state school for girls with autism in the UK. Headteacher Sarah Wild believes that girls can often go undiagnosed due to their tendency towards ‘masking’. She suggests that autistic girls are often more interested in socialising and building relationships than their male peers, and learn to copy the behaviour of those around them from an early age as a coping strategy.

Nasen makes a similar point with regards to the topics that girls with autism can become obsessive about, which is often a neurological sign of autism. Girls’ special interests can tend to materialise in areas such as boybands, or looking after animals – interests that don’t seem out of the ‘ordinary’ for their age group. Boys, on the other hand, are more likely to focus on technical, niche topics that can make diagnosis more straightforward.

Sarah Wild is not a fan of the word ‘diagnosis’ when it comes to autism, which she thinks “makes it sound like cancer” or another illness. As opposed to US schools which focus on “curing”, Limpsfield Grange employs a ‘hybrid’ model that focuses on moving away from the medical model and towards the social integration model in place in Australia.

Taking action

As the only school of its kind in the UK, Limpsfield Grange recognises its important role in raising awareness of females with autism. The school has published two novels that follow the journey of an autistic girl called M, and made a documentary that was shown on ITV in 2015.

Speaking at the Big Shout, Professor Francesca Happé said that “Unless we change our male stereotypes of autism, and find out much more about female autism, girls will continue to miss out on the recognition and support in childhood that could have helped them to understand themselves and interact with others, to fulfil their potential.”

Her words were echoed by Professor Barry Carpenter, Chair of the Autism and Girls Forum, who said that action from politicians and researchers in this area was “desperately needed”.

Follow us on Twitter to see what developments in public and social policy are interesting our research team. If you found this article interesting, you may also like to read our other articles on children and young people.

The way forward for mental health services for children and young people

Black and white photo of young girl.

Image courtesy of Flickr user darcyadelaide using a Creative Commons license

By Steven McGinty

“Not fit for purpose” and “stuck in the dark ages”

These are two of the phrases used by the Care Minister, Norman Lamb, to describe mental health services for children and young people in England. The minister admitted that young people are being let down by the current system and has announced that a new taskforce will look into how the system should be improved.  To coincide with this review, I decided to look at the current situation for children and young people with mental illness, as well as highlight some of the main themes from the latest evidence.

The Office for National Statistics (ONS) reports that one in ten children and young people (aged 5-16) have a clinically diagnosed mental health disorder. This covers a broad range of disorders, including emotional disorders, such as anxiety and depression, as well as less common disorders such as autism spectrum disorders (ASD) and eating disorders. Approximately 2% of these young people will have more than one mental disorder. The most common combinations of disorders are conduct and emotional disorders and conduct and hyperkinetic disorders.

The likelihood of a young person developing a mental disorder is increased depending on a number of individual and family/ social factors. There are a whole range of risk factors, but some of these include:

  • having a parent in prison
  • experiencing abuse or neglect
  • having a parent with a mental health condition
  • having an autistic spectrum disorder (ASD)

It’s important to note that mental illness is complex, and that not everyone in these risk groups will struggle with it. This is particularly true when a young person is in receipt of consistent long-term support from at least one adult.

The impact of mental illness can be particularly difficult for young people. For instance, the National Child and Adolescent Mental Health Service (CAMHS) Support Service reported that young people who suffer from anxiety in childhood are 3.5 times more likely to suffer from depression or anxiety in adulthood. There is also an increased chance of young people coming into contact with the criminal justice system, with Young et al highlighting that 43% of young people in prison have attention deficit hyperactivity disorder (ADHD). The Centre for Mental Health also suggests that young people with mental health problems struggle to achieve academically, as well as in the employment market.

When a government minister condemns his own department, it’s evident that there are severe problems.  However, this does not have to be the case.

Below I’ve outlined some of the key lessons to come from evidence on what makes a good mental health service for children and young people.

Continue reading