Girls and Autism
Educational, Family and Personal Perspectives by Barry Carpenter, Francesca Happe and Jo Egerton.
The ‘Parents of Girls with Autism’ online community has now been approved and can be found here http://network.autism.org.uk/group/parents-girls-autism
The community is aimed at parents, however it also welcomes women with autism and professionals with an interest in the subject.
Please register through the weblink above to join.
This blog describes an initiative in the West Midlands led by MyLife.http://www.mylife.uk.com/
This guest blog comes from Professor Barry Carpenter CBE, chair of MyLife, a support service in Hartlepool and Moseley in Surrey enabling people with complex needs to live as independently as possible in the community. Here, he describes MyLife’s new initiative in the West Midlands to support young people leaving education and preparing to live independently.
We all develop the desire to live independently and take control of our adult lives as we approach school-leaving age, and young people with special educational needs are no different.
But transitioning into employment and independent living is obviously more challenging for this group. As a former headteacher, I’ve seen so many young people not do well because of a lack of support as they enter adulthood; they haven’t been able to secure a job, they remain dependent on their parents and lose confidence in their abilities.
MyLife is currently working in partnership with a school in the West Midlands to explore ways we can help young people with special needs better prepare for leaving education.
My daughter, Katie, has been the inspiration for this next stage of MyLife’s development. She has Down’s Syndrome and she has shared a home with friends for eight years. Now aged 30, she’s just about to start her first paid role with a school, running a ‘without words’ book club for children who find learning easier through images rather than text.
Katie has experienced numerous knock-backs but I believe the fact that she is independent and able to manage her own life has given her the self-esteem to withstand these setbacks and maintain her confidence.
And building this independence is what we are focusing on in the West Midlands.
A tenet of the revised Code of Practice for SEND is to offer young people support past the age of 19 and up to 25. MyLife is working with Westminster School in Rowley Regis to develop their curriculum for this age group.
A key theme is ‘My Home’, and students will have access to a training flat where they can learn life-skills such as cooking, cleaning, registering with a doctor and taking public transport.
Alongside this we are looking at ways we can support the young people to live independently. This will involve sourcing a range of accommodation to meet their range of needs, be it a shared house, a flat of their own or supported living. We shouldn’t just think that this model can only be available to people with low support needs; living as independently as possible should be available to people with the most complex needs as well.
It’s an exciting development of our services and one that we want to see expand.
The National Audit Office estimates that equipping a young person with the skills to live in even semi-independent housing could reduce support costs to the public purse by around £1 million. It also suggests that supporting one person with a learning disability into employment could increase that person’s income by between 55 and 95 per cent.
But what is most important, both for young people and our communities, is that these skills give young people with additional needs, people like Katie, the chance to create a home for themselves where they can make their own choices, have friends to visit and have somewhere to recharge and truly relax.
Professor Barry Carpenter is Chair of the Advisory Board for Mylife. A former headteacher of three special schools and a school inspector, he is currently Chair of the Autism and Girls Forum and the Complex Needs Training Review Group for the National Association of Special Educational Needs.
His innovative research project on children with complex learning disabilities in the UK is now being replicated in two major European projects and translated into major European languages.
He is a member of Health Education England Learning Disabilities Expert Reference Group for the Department of Health, and lead consultant for the South Australian Department of Education and Children’s Services. He is also a director of Books Beyond Words.
To find out more about MyLife services go to http://www.mylife.uk.com/
New article: ‘Let’s Talk Autism’ -a school-based project for students to explore and share their experiences of being autistic
Kathryn Stevenson, Katie Cornell and Vivian Hinchcliffe
Understanding what autism means on a personal level can be an important process for young people on the autistic spectrum, and being able to reflect on this and discuss with autistic peers can be particularly helpful. However, opportunities may be restricted by reluctance to talk about diagnosis and because of difficulties in communication inherent in autism. This article describes a therapeutic media project within an ASD school that attempted to support young people to reflect together about what autism meant for them and create resources to share with others.
The process is described and main themes of discussions analysed using thematic analysis. Main themes emerged of making sense of diagnosis, experiences of difference and transition to adulthood. Various strategies to manage diagnosis and negotiate identity also emerged. Issues around informed consent and confidentiality and the therapeutic value of such groups are discussed.
In this latest issue of the SEND magazine there are articles on Girls with Autism Spectrum, and Mental Health in children with SEND.
Nasen, the UK’s leading organisation supporting those who work with or care for children and young people with special and additional educational needs and disabilities (SEND), has launched a free miniguide to supporting girls with autism spectrum conditions/disorder (ASC/ASD).
Girls and Autism: Flying under the radar, is a 20-page full-colour guide designed to alert busy teachers to the hidden struggles of girls with ASC/ASD. Misunderstanding of their support needs, it suggests, may lead to unnecessary school exclusion and mental health disorders.
Behaviours stereotypically associated with autism are now widely recognised by most teachers – the high-intensity interests (e.g. trains, mechanisms, dinosaurs) and the self-regulatory and anxiety-associated behaviours (e.g. flapping, jumping, resonating noises, meltdowns). However, now researchers are warning that these behaviours are not equally indicative of ASC/ASD in both boys and girls.
‘Ironically, it seems we, as professionals, have been over-focused on the detail and not seen the bigger picture,’ says co-author Jo Egerton. ‘It is not the object of interest that is key, but the extreme intensity and duration of interest that sets girls and boys with autism apart from their typically developing peers.’
A young girl with autism may, for example, collect hundreds of identical pictures of her favourite pop star or develop an unusually encyclopaedic knowledge of fashion, Egerton says.
‘Rather than externalising their ASC behaviours, it seems that girls are more likely than their male peers to suppress them, to assiduously study and copy peers’ socially acceptable behaviours, and to adopt more internalised and invisible relief from stress (e.g. self-harm, eating disorders).’
This means that their ASC/ASD is likely to go unnoticed, she adds, unless their school knows how girls with autism ‘fly under the radar’.
The Girls and Autism miniguide – which comes out of the UK’s National Association of Head Teachers’ Autism and Girls Forum chaired by Professor Barry Carpenter CBE – is a first step for teachers in becoming more informed. It introduces the debate around autism and gender; identifies key issues for girls with ASC/ASD; provides practical school-based support strategies; shares family, professional and academic perspectives; and signposts further reading.
‘Our challenge in schools is to evolve a curriculum and pedagogy that are responsive to our new understanding of girls with ASC/ASD and their specific needs,’ Professor Carpenter says. ‘This will involve a process of inquiry, to investigate and explore, for and with the girls, how best their needs can be met.’
You can download your free copy of Girls and Autism: Flying under the radar here.
For the National Conference on Girls on the Autism Spectrum ; The BIG Shout, to be held in London on 27th January 2017.please click here http://www.naht.org.uk/welcome/naht-events/conferences/girls-on-the-autism-spectrum-the-big-shout-conference/