Sexuality, Autism and Young People – Families Study

The Sexuality, Autism, and Young People- Families study (SAY-Families) is a joint project between Warwick, Bangor and Glasgow Universities.  Researcher Stacey Hunter explains more about the study and how you can get involved.

“The aim of the SAY-Families study is to find out about how the parents of young people with High Functioning Autism or Asperger syndrome talk to their children about relationships and sex education. A developing sexuality is one of the key challenges that young people face as they grow up, and it is important to find out about families’ experiences of supporting their child in this sensitive area. It is hoped that by finding out parents’ views and experiences, the study will be able to inform the development of support materials for young people and their families.

To find out parents’ views and experiences, we are carrying out one-to-one interviews and have developed an online survey. If you think you might like to take part in either part of the study, more information is below. If you would like to talk to one of the research team, please also feel free to give us a call, we would be more than happy to hear from you (our contact details are also below).

The face-to-face interview

We would like to speak with the parents of young people aged between 16 and 30 years old, who also have a sibling of a similar age that is the same gender as them. This is because we would like to find out if your experiences of supporting each of your children in this area have been similar or different.

One of the research team, will speak with you on the phone to arrange a time that is suitable for you to take part in an interview. The interview can take place in your home or somewhere else that is convenient. You can also arrange for your interview to take place over the phone, if that suits you better. The interview will last roughly 45 minutes.

Online Survey

We are also looking for the parents of young people with High Functioning Autism or Aspergers aged between 16 and 30 years old to fill in an online survey. The survey can be completed by one or both parents of a young person. If you would like to take part as a couple, we ask that you fill in the survey independently and indicate that you would like your responses to be linked.
You can access the online survey here. 

Many thanks for taking the time to read about the SAY-Families study. If you would like to take part or would just like find out more about the project please do not hesitate to contact us:

Stacey Hunter
School of Psychology
Brigantia Building
Bangor University
Bangor, Gwynedd
LL57 2AS

Tel: 01248 388255
Email: [email protected]

Cerebra Family Research Ambassador Project

At Cerebra we believe in listening to families and using what they tell us to inspire research, innovation and information.  One area that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services.

As a response to this Cerebra funds research by Professor Luke Clements to explore practical and effective ways of resolving the commonly occurring problems families face.  As a result we have developed a number of resources, based on cases raised with us by parents and carers within our Legal Entitlements Research Project. We have a lot of reliable, up-to-date and evidence based information and the job now is get that information out there for parents and carers to use to improve their family life.

Cardiff Law School, together with Cerebra, have been awarded funding by the Economic and Social Research Council (ESRC) to help us to improve the impact of our research.  With that money we have launched a new project, The Family Research Ambassador Project, which will involve parents and carers of disabled children in helping us to make our pool of existing information much more accessible and engaging to others.

The project’s main aims are:

  • to produce a ‘Problem Solving Toolkit’ that deals with these commonly occurring problems in accessing services
  • to test, improve and build on the toolkit
  • distribute this as widely as possible within various disability support groups and to parents of disabled children
  • to give parents and carers the confidence to tackle decisions and to feel supported

In the longer term we hope to write and publish a peer reviewed academic paper evaluating the Family Research Ambassador Project and (funding permitting) use our first intake of Family Research Ambassadors to train the next intake, with the aim being to spread this project as wide as possible.

We have taken on eight Family Research Ambassadors (FRAs) to assist in bringing this toolkit together and to circulate and promote this to disability support groups and social media.  We value their experience, skills and knowledge of disabled children and this is our opportunity to introduce them to you:

Alison Thompson is the mother of two young adults, one of whom has ADHD and Asperger’s syndrome. She is the author of ‘The Boy From Hell: Life with a Child with ADHD’ and speaks regularly about her experience of parenting a child with the condition. She is also a trained coach who works with parents of ADHD children to help them build their confidence and overcome some of the struggles of parenting a child with special needs.

Lisa Reakes has been helping the families of disabled children through her part-time volunteer work with Somerset Parent Carer Forum and as SEN parent governor. Her daughter has a physical disability with epilepsy.  She has a background in fundraising and marketing.

Claire King has 2 boys aged 5and 8. As a mum of a child with hearing loss, ADHD and Asperger’s syndrome, she has first-hand experience of the challenges parents face in everyday life as well as the challenges in accessing the services available.  Claire is very passionate about helping other parents who face similar obstacles and strives to assist others overcome these barriers.

Dawn Cavanagh lives in Pembrokeshire with her husband and son. Her son attends a special school and has autism, epilepsy, ADHD and learning difficulties.  She is currently studying for a master’s degree in Abnormal and Clinical Psychology at Swansea University.  Her particular research area is learning disabilities and bereavement.  She is also a volunteer for adults with learning disabilities.  In her spare time she loves to dance or go for a stroll along one of Pembrokeshire’s beautiful beaches.

Sian Taylor is a Senior Lecturer at Cardiff School of Management, Cardiff Metropolitan University. She has two boys aged 10 and 6. The youngest has complex special needs. Sian is an Ambassador for Cerebra, a Trustee for WellChild and also a member of their parent advisory group and regional advisory group. She participates in a University of Surrey steering group for eHealth and also a focus group for Diverse Cymru. She is interested in many areas regarding child disability.

Karin Crimmins is Mum of 2 wonderful girls, the youngest of whom has Down’s Syndrome. She is passionate about sharing information, assisting and supporting others in relation to the provision of health, social care and education support services. She understands the frustration and hurdles that parents and carers face and that not all parents are able to advocate for their children, hence her desire to be involved in this project. Karin has been able to ensure that her daughter receives the correct level of support for her needs and wishes to pass on her knowledge and experience to others. Karin has a very active role within the voluntary sector as she is the membership secretary/newsletter editor for the South East Wales Down’s Syndrome Support Group and is an administrator for the Future of Downs group.

Marie Macey is the mother of three children, her youngest son having autism and moderate/severe learning disabilities. She is a retired social worker, having worked largely with supporting foster carers, but also worked in a children’s disabilities team. She has been involved in the Legal Entitlements Research Project since the beginning and is delighted by its development. She has also been actively involved in various disability support groups in and around Cardiff for the last 20 years, promoting the project through these groups.

Wendy Merchant is a registered child nurse who is committed to advocating child, young people and family rights and involvement. Wendy is an experienced facilitator who is good at motivating others, chairing meetings and seeking sources of support for families. She is a self-motivated individual who is passionate about the delivery of compassionate care in the NHS. Currently Wendy is a PhD Student at UWE, Bristol, researching “Caring for children with special needs on a hospital ward. Mothers and nurses experiences.” Wendy has experience of supporting parents as an organiser of a parents support group, as a family support worker and on an informal basis as a mother of a disabled child.

We will bring you updates on the work of the project throughout 2016.

Cerebra’s Sleep Service Helps Caroline and Dylan

Caroline and Dylan

Caroline and Dylan

Caroline is mother to six year old Dylan who is thought to have high functioning Aspergers although the family are awaiting a formal diagnosis. Dylan’s condition has a huge impact on the family’s daily life, including Dylan’s sleep pattern. Caroline shared her story with us:

“My name is Caroline, I am mother to three children aged 5, 7, and 15. I also have two older step children. My youngest son, Dylan, is nearly 6 years old and we love him so much. Dylan likes Fireman Sam and Ben 10, loves talking about dates and numbers, has a beautiful smile and an incredible memory.

Dylan has been under a paediatric consultant for the past 3 years who thinks Dylan has high functioning Aspergers. Despite intervention and support from numerous agencies, we are still awaiting a formal diagnosis.

My husband and I face many challenges in caring for Dylan including regular issues with toileting, meltdowns, fixed behaviour, communication, sensory processing and most importantly: sleep!

I attended sleep seminars run by Cerebra and we were allocated a sleep practitioner, Catherine Stone. Catherine came to the house and set out a personalised plan to tackle the sleep issues. Followed up with regular support and advice on the phone, we have felt able to start moving things forward. I know that Dylan’s sleep issues won’t be resolved overnight, but my husband and I now feel empowered to make gradual changes in order to help Dylan and the rest of the family to have less interrupted sleep.

We are extremely grateful to Cerebra for providing us with this support, so I am running in a 10k event in Cardiff on 28 February 2016 to raise money for Cerebra so that they continue to help families like ours. Thank you Cerebra!”

“Thanks to support from Sleep Practitioner Catherine Stone, Dylan has slept through 11 nights in January, 15 nights in February, 18 nights in March and 20 nights in April! Before Christmas we were lucky if he slept through 4 nights a month! Dylan will now settle alone every night and is less stressed at bedtime.  I would like to thank Cerebra for their support and advice and would recommend this service to anyone.”

Caroline sent us this lovely video update of their progress following their support from Catherine:

“CleverstiX” – a clever way to bring fun to the dinner table!



Dr Ross Head, from The Cerebra Innovation Centre (CIC) recently came across a novel little product at the OT show in the NEC that we wanted to share with you. It might help to bring a little fun to the dinner table!

“CleverstiX are like a pair of chopsticks, but they are joined together at the top, with innovative finger loops to enable them to be used by children. Not only are they a fun way to eat, the scientific benefit is immense. Due to the fact they require the user to open and close (there is no spring involved) the fine motor control used is a great way to train muscles, as well as hand-eye coordination.

They come in really fun colours and the finger loops are adjustable so they will suit many different sizes of user. They are a Korean invention and there are over 5 million Korean children using them. CleverstiX have been praised by the National Handwriting Association and endorsed by the Science Museum as a great way to increase dexterity and fine motor control.

I took them home to test with my children. It just so happened that it was my night to cook and for some reason we decided on Burritos. Not very Korean, I know, but my kids loved the CleverstiX and ate the whole lot! They now make a regular appearance on the table, and are a great way to keep the children entertained whilst eating. They were such a simple concept but the children were able to pick up any and all of the pieces of exploded burrito! They have wide and quite “grippy” tips to hold the food, and worked just as well with noodles and fruit etc.

Have a look at the website for more information: They are available in lots of places and online with more details on the website”.

-Dr Ross Head, CIC