There is growing evidence that the number of girls on the autism spectrum has been under-estimated and that their needs are being overlooked.Now a conference organised by the National Forum for Neuroscience and Special Education and to be held in London in January 2017 will bring together experts in the field to discuss the issues. Special World spoke to one of its organisers Dr Rona Tutt OBE, an ex special school headteacher and Past President of the National Association of Head Teachers
The Girls on the Autism Spectrum – the Big Shout! Conference is an initiative of the National Forum for Neuroscience and Special Education. Can you explain what the NFNSE is and how it came about?
The National Forum for Neuroscience and Special Education (NFNSE) was founded in 2011 by Professor Barry Carpenter, Professor Francesca Happé and myself. It emerged from an idea that Barry discussed with us about how to facilitate closer working between neuroscientists and those working with children who have special educational needs and/or disabilities (SEND).
As Professor of Cognitive Neuroscience at the Institute of Psychiatry, Psychology and Neuroscience in London, Francesca was keen for stronger links with teachers, while Barry and I, having spent our working lives in special education, were equally keen to bring together those who understand how children learn with those who teach them.
Since 2014, the Forum has been hosted by the National Association of Head Teachers (NAHT). The following year, a group was established by nasen to look at raising the profile of girls on the autism spectrum. Barry was asked to chair this new group and both Francesca and I were invited to be members of it. So, when it, too, was looking for a home, it was agreed by all concerned that it would fit under the umbrella of NFNSE on the NAHT’s website.
Why do you think the topic of girls on the autism spectrum came to the fore?
Since the days of Leo Kanner and Hans Asperger’s work on identifying autism in the 1940s, there has been a belief that boys heavily outnumber girls. In the last few years, people have begun to raise doubts about whether this is the case, or whether it is partly because:
- parents and teachers are more likely to refer boys for diagnosis
- the diagnostic tools themselves have been designed with boys in mind
- autism in girls may be less easy to spot because they are more anxious to conform and to fit in socially.
Researchers are looking into the whole question of autism and girls, and the National Autistic Society (NAS) has raised the profile of girls and women on the autism spectrum at their conferences. Adults with autism who speak about their experiences or have written books include several women, which, again, has brought the subject to people’s attention. For example, in 2014, Robyn Steward, who is becoming well known on the conference circuit, wrote The Independent Woman’s handbook for Super Safe Living on the Autistic Spectrum, to help others like her.
So, we’ve reached the point where the topic is being raised and many are keen to find some answers.
Can you tell our readers what the NFNSE has done on the topic so far?
Since the Autism and Girls Forum has been placed under the umbrella of the NFNSE, the NAHT has taken over its administration from nasen, who, having been instrumental in setting it up, were no longer in a position to host it. This has included being responsible for arranging regular meetings of the group to keep up the momentum and to organise its first conference, Girls on the Autism Spectrum; the Big Shout. The conference is being held in London on 27 January 2017 with the aim of preparing a ‘Call for Action’. Hence the title’s reference to ‘the Big Shout’!
The other main work of the Autism and Girls Forum has been the production of a publication in nasen’s mini-guide series: Girls and Autism: Flying Under the Radar. This has been written by Jo Egerton, Barry Carpenter, and other members of the Autism and Girls Forum.
As the NFNSE has ensured that insights from neuroscience has been an ongoing theme woven through NAHT conferences and courses, it has been possible to use these events to raise the profile of autism and girls as another dimension, including publicising the mini-guide.
The NAHT seems to have played a key role in developments to date. Can you say why?
The Association has a wide membership across school leaders in early years, primary, secondary, post-16 and special schools. As special needs goes across all these settings, NAHT has always been active in this field. The Association’s SEND Council, which is where much of the detailed work goes on, has members from across England, N. Ireland and Wales who represent different kinds of provision, including pupil referral units and specialist support services, as well as being specialists in different types of need.
Each year in the Spring, the SEND Council is instrumental in putting on a conference known as the Special Schools, Specialist and Alternative Provision Conference. As the pupil population has increased in complexity, members have been keen for a neuroscience thread to run through these conferences. Consequently, speakers from the National Forum for Neuroscience and Special Education and, more recently, from the Autism and Girls Forum, have provided insights from recent research at these events and explained their relevance to teaching pupils with SEND, including those who have complex learning difficulties and disabilities (CLDD).
Is interest in girls on the autism spectrum international or is the UK to the fore in exploring this issue?
In the last 30 years or so researchers have taken a growing interest in autism, not least because of the rise in the number of people across different countries being diagnosed as being on the spectrum. International research has led to some researchers wanting to pursue the question of whether females are being under-diagnosed. America and countries in Europe, including the UK, have been particularly active in the field.
For example, Autism in Pink was an EU-funded project across four countries: the UK, Spain, Portugal and Lithuania. The findings were presented at the Autism in Pink International Conference, held in Lisbon, Portugal in May 2014. This suggested that there are many more girls and women on the autism spectrum than previously thought.
As soon as Girls and Autism: Flying Under the Radar was produced, it attracted interest from an international audience. When the Girls on the Autism Spectrum; the Big Shout conference was advertised months in advance, people rushed to book places. There is a thirst from parents and professionals to know what is being discovered, so that girls stand a more equal chance of receiving the support they need.
What can attendees at the Conference hope to learn and what are you hoping it will achieve?
Those who attend will have an opportunity to gain a more informed picture of what we know, as well as what we don’t yet know, about girls on the autism spectrum. At a conference it is rare to be able to meet, question and hear from speakers who cover such a range of perspectives, including: internationally renowned researchers; young people and adults who have a diagnosis of autism; parents and carers who are in a position to explain both the joys and stresses of family life; and from those who strive to provide an education that will bring out the best in all their pupils.
As well as shining a light on a topic that has been neglected, members of the Autism and Girls Forum hope that the conference will be a clarion call to change mindsets, so that girls have the same chance of being diagnosed as boys and receive the support they and their families need. At present, these young people are in danger of being under-diagnosed, leading to the possibility of mental health issues, when acute anxiety, self-harming or eating disorders may overshadow the underlying cause. We owe it to them and their families to do better in future.
Are there plans to further develop this work after your January conference?
When the Autism and Girls Forum was first established, its main aim was to raise awareness of the issues around girls who are on the autism spectrum. At that time, it was expected that the Forum might meet for a year or so. However, it soon became apparent that, not only was there a great deal of work to be done in this area, but that, between them, members of the Forum had the clout and connections to make an impact on improving the outlook for these young people.
In addition to the mini-guide already written by members of the group and published by nasen, and the national conference organised for January 2017, on Tuesday 8 November, a Parliamentary roundtable was held in the House of Lords, hosted by Professor Sheila the Baroness Hollins, which brought together a range of people with an interest in exploring how to improve the recognition of girls on the autism spectrum and the support that needs to be put in place for them and for their families. As a follow-up to the conference and the roundtable events, the group has further meetings arranged for January and February 2017, at which the future of the Forum will be decided.