Resources that assist parents/carers and their children/adolescents
Resources to help talk to kids about sexuality
Family Planning NSW -
BodyTalk This site has loads of information to support young people in making healthy decisions around your reproductive and sexual health.
Victorian State Government - sexuality education for parents
Resources that address ‘typical development’
Better Health Channel Victoria
Talking to primary school aged children about sex, development, relationships and safety’. This site provides a lot of information about what is expected in sexual development, behaviour and awareness of children in the primary school aged group, it also
gives ideas on how parents can bring these topics up with their children, and common questions and issues that could arise within this age group:
https://www.betterhealth.vic.gov.au/health/healthyliving/talking-to-primary-school-children-about-sex
Raising Children Network
Provides information for parents and carers on how to talk to their children about sex and development, this is broken up in to tips and information relevant to different age groups. It also examines ways to open up a conversation, and provides examples of things parents/carers might like to say. The site also
looks at what puberty entails and some of the changes children can expect to see, and possible ways of how to explain these to your child:
http://raisingchildren.net.au/articles/sex_education_young_children.html
Is a publication that was released by the Western Australian Health Government in 2012, and was put together with the assistance of staff at La Trobe University in Melbourne. This publication goes through different developmental stages and how to talk to kids about sex, puberty
and development, sexuality and gender identity. It also examines the expected and acceptable behaviours at different stages of childhood and adolescence, and gives parents/carers ideas on how to broach difficult and/or awkward topics with their children relating to sexual development and behaviour.
Kids Health
is an International website that provides information geared towards parents, children, adolescents and educators. It has information and resources that have been checked by medical professionals, and makes available information for many children health issues, with significant sections on sex and development. The
site and information contained on it doesn’t appear to have anything specific to differences in sex development, but it does go through things such as puberty and reproductive systems etc. and how to talk to your children about them, and provides kid friendly information on the same:
http://kidshealth.org
Better Health Channel Victoria
‘Talking to young people about sex’. This site gives information about to talk to young people about sex, whilst promoting a positive approach to sexuality, and also provides links on where to find further help and resources in this area:
https://www.betterhealth.vic.gov.au/health/healthyliving/talking-to-young-people-about-sex
Children’s book - ‘Hair
in Funny Places’
By Babette Cole:
This book tells a pictorial story of hormonal and puberty development in both boys and girls in a light and humorous way. It is most likely geared towards children in the 8 – 12 year range, with more of a focus on the girl in the story. It very much talks about ‘normal’ development and doesn’t
really consider any types of development or differences outside the norm and expected stages, but could still be useful as a tool to start the conversation about some expected changes and where differences might lie.
Scarlett Teen
Is a website that is probably aimed more at those nearing the end of primary school years or a little older, but it does provide a diverse range of user friendly information that would appeal to children/adolescents that may have questions, and are unsure of how to access this information elsewhere. It provides a space where
children/adolescents can ask these difficult questions, chat with others, be linked up with sexual health information and get to know their own bodies better:
http://www.scarleteen.com
Resources that consider and discuss ‘differences/variations’
in development
Intersex Peer Support Group IPSA- is a peer support group for individuals who have a variation in their sex characteristics and their families.
Here IPSA have put together some resources to help families navigate sharing diagnosis information to their children.
About Kids Health
Is an International website that provides health education and resources for children, adolescents, parents and caregivers that is approved and overseen by ‘The Hospital for Sick Children’ (Canada). It provides evidence based information, and presents complex medical
info in a user friendly format.
The section, as linked below, provides pictorial explanation of how the body works and general sex development, as well as looking at how and when differences can develop. It gives information about the different stages of puberty, as well as examining some DSD specific conditions and
differences, whilst providing pictorial explanation of these (conditions looked at include CAH, Hypospadias, AIS and 5ARD):
http://www.aboutkidshealth.ca/En/HowTheBodyWorks/SexDevelopmentAnOverview/Pages/default.aspx
DSD teens
is a website that is set up by and for young people with DSD conditions, with the assistance of medical professionals. It provides age appropriate information for those 10 years plus, and also provides condition specific information. This includes a section that specifically looks at
puberty and development via DSD conditions and what to expect in each stage and why, this could be used as a tool for parents/carers to be able to understand and discuss these differences, whilst also being useful for the young person themselves:
http://www.dsdteens.org/
The
eXtraordinarY Kids Clinic
At the Children’s Hospital in Colorado, is an inter-disciplinary team that provides a clinic for children with X&Y chromosome variations. The team also conducts
research in sex chromosome variations, and has published brochures for parents/carers/family members on how to talk to your children about certain diagnoses (e.g. Triple X Syndrome, Klinefelter syndrome, XYY syndrome), but the information provided could also be used as a more general
resource for talking points and suggestions in relation in how to talk to children about DSD conditions. Please see links to some of these brochures below:
Accord Alliance
(Formerly known as the Intersex Society of North America) and the consortium of parents, with assistance from medical professionals, in 2006 have released a clinical guideline/handbook for parents/carers of children with DSD that looks at age appropriate ways to
discuss disclosure. It considers how a child may present developmentally during different age stages, and considers the appropriate way to discuss a DSD with children in different age groups. It provides examples of conversations and certain aspects and questions that the child may raise, and how to be prepared
for these and address them, as well as looks at ways to focus on the positive aspects of difference:
http://www.dsdguidelines.org/htdocs/parents/index.html
Academic article (2011)
that considers the stigma and stress from a parent’s perspective around diagnosis, and needing to disclose to their child with a DSD. It considers the parents in the studies’ experiences in what worked and what didn’t work in the diagnostic and discussion stage relating to their
children with DSD. The study also considers some future directions in this area:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223129/
Webpage with Information from the American/Canadian AIS DSD support
group
Is made up of individuals with DSDs, their parents and families, as well as input from appropriate and well-informed medical practitioners. This particular page gives information around age appropriate information and tips for disclosure of DSD conditions for parents/carer/families to think about with
their children. It gives tips on how to start these conversations, and considers the fact that information will likely need to be built up gradually, so there will be many a conversation over time where information can be disseminated appropriately:
http://aisdsd.org/resources/parentsfamilies/educating-children/
"As parents, we want practical help to create a home where our kids feel loved and secure and can learn about how their body develops. What we really, really want is a script that will tell us in every circumstance what to say and how to say it. We want that script that will show us exactly how to be ‘pro-active’ in talking to our kids, ‘to take the initiative’, ‘to seize the moment’." - from the website - Great workbook to print and write in notes, thoughts, and even take to your clinician to help build a dialog that works for you.
http://www.dsdfamilies.org/docs/paper/D'Alberton-Disclosing-2010.pdf
InterAct Youth
An advocacy group set up by intersex youth aging from 13 years to 29 years and provides a space where they can tell their stories, and be a support to one another. It also provides links and resources for Intersex youth to access. Please find below a link to the general InterAct
website, as well as a copy of a brochure that this organisation produced which looks at young peoples’ experiences of hearing of their diagnosis and how they felt about it, and what they wish was done differently:
Scottish Differences in Sex Development
A site that looks at DSD conditions and were to get treatment for these in Scotland. It does have a section that is specifically for young people, but this links to DSD teens (as already mentioned above). It does also have some condition factsheets that are quite
straight forward and user friendly, fact sheets are available for Hypospadias, Vaginal Dilation, CAH, Undescended Testes and MRKH:
http://www.sdsd.scot.nhs.uk/families/
The Nationwide Children’s Hospital (Ohio, USA)
The webpage below provides dot point information on how and when a parent/carer should consider discussing the diagnosis of DSD (i.e. disclosure) with their children:
http://www.nationwidechildrens.org/dsd-diagnosis-disclosure-tips
Academic article (2017)
Examines the needs of professionals working with patients who have a DSD, and their families. It considers the stress of diagnosis and the acceptance of same, and looks at coping with issues that DSD conditions can raise (e.g. infertility). It emphasizes the need for an
interdisciplinary response that allows for supportive counseling and intensive support, particularly in the diagnosis/disclosure stage, with an emphasis on information provision:
http://bmjpaedsopen.bmj.com/content/bmjpo/1/1/e000132.full.pdf
Academic article (2015)
Considers the ethical considerations when diagnosing, disclosing and treating a child with a DSD. This piece looks at best practice options, and ethical decision-making frameworks:
https://www.dovepress.com/ethical-perspectives-on-the-management-of-disorders-of-sex-development-peer-reviewed-fulltext-article-MB
Children’s book - ‘Giraffes Can’t Dance’
By Giles Andreae
This story is about Gerald who wants to dance, but feels he cannot, as Giraffes have never been seen as good dancers by the rest of the animal kingdom, and he fears he will be laughed at. Gerald really wants to dance, but doubts himself, until he finds a cricket who plays him a different
tune to which he dances and dances, and the other animals come see him and applaud his way of dancing. It is not a story that is about particularly about development and puberty, but it is a story that could be used as a way of explaining that differences are ok, and that you can dance to your own tune!
DSD diagnosis specific resources that assist in opening up
discussions and questions for children and adolescents with these types of variations.
DSD teens has specific sections
relating to puberty and CAIS, Swyers
syndrome, partial or mixed gonadal dysgenesis, PAIS, CAH, 5ARD, 17B HSD, MRKH, cloacal or bladder exstropy, hypospadias:
DSD teens has specific sections relating to each of the DSD conditions as listed above that look at the likely projection of how an affected individual will develop and experience puberty. The information provided is presented in a user friendly and easy to understand format that is geared towards adolescents,
but could also be a useful tool for parents/carers to use for information gathering and a way of explaining how their child might be feeling to them:
http://www.dsdteens.org/
CAH, hypospadias, AIS and 5ARD
The website ‘About Kids Health’ gives information about the different stages of puberty, as well as examining some DSD specific conditions and differences, whilst providing pictorial explanation of these conditions, and what those with these diagnoses can expect to happen with their
body:
http://www.aboutkidshealth.ca/En/HowTheBodyWorks/SexDevelopmentAnOverview/Pages/default.aspx
AIS
Web page from the AISSGA (Androgen Insensitivity Support Group Australia) that provides information from a parent’s perspective about when and how to discuss your child’s condition with them. It provides age appropriate prompts, and examines ways of discussing difficult and personal
topics with your child with AIS, but could also be useful in discussing other differences in sex development with children:
http://aissga.org.au/parents.htm
Children’s book - ‘Pipo and Pepo’
It was originally written in Spanish by a young woman with CAIS, and has been translated in to English. It is aimed at 5 – 8 year olds, depending on their level of comprehension. The story talks about Pipo and Pepo (gonads/testes) that are discovered in a young girls tummy and lead to her needing to have an operation
(hernia repair), and the story provides a fable type way of explaining what is happening to the young girl, which is appropriate to her level of understanding:
http://www.dsdfamilies.org/docs/book/PIPO%20Y%20PEPO%20english%20A3.pdf
A pictorial book ‘Amazing you’
By Ellie Magritte
Ellie is the parent of a young girl with PAIS, and is one of the founders of the DSD families’ website. Ellie put this booklet together with the assistance of other parents, Endocrinologists, Psychiatrists and other adults who are living with AIS conditions. The aim of
the book is to be able to explain to her 11 year old daughter in a friendly and non-confronting way about what is happening in her body:
http://www.dsdfamilies.org/docs/telling_talking/Amazing%20you%20...Sophie,%20PAIS%20-%20final3.pdf
Children’s book
- ‘Katy No-Pocket’
by Emma Payne:
This story tells of a mother Kangaroo called Katy that has no pockets to carry around her baby Joey called Freddy. It talks of her journey to discover how else Katy can carry Freddy, and aim to keep up with the other kangaroos. In the end it celebrates Katy being different and finding another
way to do these things, and more. It could be used as an analogy for parents of children with AIS, in that similar to Katy, those with CAIS will not have Ovaries or a Uterus, and this story could potentially be a less confronting way of opening up discussion about this difference in development, and focusing on
the positives of this difference, rather then what you lack because of it.
Klinefelters
Academic article (2014)
Considers how parents could go about telling their children about their Sex Chromosome Aneuploidies (e.g. Klinefelter), but could also be used as a more general resource across the spectrum of DSD conditions, when considering issues involved in disclosure. The
information presented in the article was from a study that took into account both parent and patient perspectives about how and when to tell your children about their diagnosis, and looks at these participants experiences of the initial disclosure(s). It provides recommendations such as scaling/spacing
disclosure over multiple conversations, accessing resources and informing yourself prior to disclosure, and using age appropriate language, as well as enlisting help from medical professionals if necessary:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5340499/