10 Tips to Support Children with Autism through Puberty, Adolescence & Beyond

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Children with autism not only have to deal with the normal tasks of adolescence such as increasing independence from parents, identity finding, the beginnings of intimate relationships and making choices about themselves and their future, but have to deal with them through a prism of autism which includes core difficulties with change itself. Adolescence is also a time when children can become acutely aware of their disability and how it affects their lives as the gap between themselves and their typically developing peers widens. Just as we supported children with autism through their early developmental milestones, we now need to help them navigate the equally important milestones of adolescence in order to prepare them for healthy and fulfilled adult lives. The research in this area is limited but what research does exist has been integrated with practice based suggestions and summarised into 10 tips to help parents and other adults supporting children with autism through this period in their lives. 

  1. Be prepared. Although children on the spectrum may be delayed in other areas of development, they will experience puberty, adolescence and all that goes with that at the same time as everyone else. This is absolutely normal and to be expected. However, they are going to need extra support in these areas because of difficulties understanding social rules and less opportunity to learn from other children.
  2. Start early. Children with autism can struggle with even minor changes in their lives. Learning in general can also be slow and confusing, especially if it is anything to do with the social skills. Trying to change rules like ‘Where it is ok to get undressed’ during puberty, already a turbulent time, can cause unnecessary confusion. Look at the things the child does now which may seem cute or quirky (e.g. giving every stranger that they meet a hug) and think “Will it be ok when they are a teenager?” If not, start working on it now.
  3. Teach what may seem obvious. Most children learn (often confusing and contradictory) information about growing up, relationships and what it is to be a man or a woman from many different places including friends, family and TV. Children with autism tend not to pick up on all of this information, and the information they do take on they find even more difficult to decode, often leading to embarrassing and hurtful experiences. To avoid this, they need things spelled out for them (e.g. that it is not ok to ask someone out on a date repeatedly after they have said ‘No’). Also, don’t assume that because they can do things like list the rules of internet safety that they will be able to use this information in real life. Real life practice is vital.
  4. Give information clearly and calmly. Use a positive tone. Don’t overload with information or language. Back up information with pictures, whatever works best for the child already. Be concrete and use correct terminology (i.e. not made up names that nobody outside of the family will understand). Teach children with good language skills the correct words to use when talking to teachers or other adults, but also the words that are ok to use with their peers when there are no adults around. Be careful about language being taken literally (e.g. that boys’ voices do not literally ‘break’).
  5. Don’t over protect. It is a sad fact that children with disabilities are vulnerable to abuse. Children on the spectrum may be even more vulnerable because of difficulties interpreting the motives of others, a desire to be accepted socially, uncertainty about what a real friendship involves and difficulties reporting past events. It is a parent’s natural instinct to protect their children. However, avoiding topics such as private body parts can teach the child that they are either unimportant or shameful and not to be spoken about. Be aware that overprotection from sexuality and relationship education leaves children vulnerable.
  6. Teach the difference between public and private.  All children need to learn the difference between what is public and what is private, including places, body parts, conversations, behaviors and online information. Learning this difference helps children behave in appropriate ways and is a protective factor in abuse. However, be careful about hard and fast rules and remember to teach that rules can change over time and why. For example, it makes sense to teach children that sex is a private topic that they can only discuss with their parents, but what are they to do when all of their peers are talking about it in the yard in school? Avoiding such conversations or worse telling the teacher will be even more isolating for them.
  7. Teach how to say ‘NO’. While compliance is highly valued in special education, it does little to support a child’s safety skills. Remember that if you teach a child to do everything that you tell them to do, you have taught them to do everything a bully or abuser tells them to do also. The first step to being able to protect yourself is to know your rights and to know that your body belongs to you, and that you have control over it and what you do with it. When a child says ‘No’ to an abuser, it shows that they understand the rules of touching and sexual behavior and, very importantly, they are able to report it.
  8. Don’t do anything for them that they can do independently. Often, people get so used to making decisions and doing things for a child with special needs that they start to do so automatically. However, this inevitably leads to the child being less and less able to do things or make decisions for themselves. Instead, set up situations where the child can experience success and constantly push slightly beyond these boundaries. Allow them to do daily tasks independently, even if it takes them longer to complete. Involve them in decisions about their lives. Give them meaningful choices throughout the day. Also allow them a wide range of experiences from which to learn from (even if they find these new experiences uncomfortable at first and need extra support). If they have an IEP, consider them being involved in the process.  
  9. Help them develop friendships. If teenagers are to develop the skills needed to enter adult relationships, they will need practice and support getting there. However, people on the spectrum often need and enjoy spending time alone and may actively avoid social situations. Don’t be mistaken, this does not mean that they do not also need or want friendship in a way that is meaningful for them or that they do not experience intense loneliness. Teach them the social skills involved. Link them in with other similar children. Find socialising events where there is a common focus, e.g. the cinema. The internet can also be great for linking together likeminded people with obscure interests. 
  10. Help them to understand themselves. Developing a healthy and realistic self-concept means understanding your own personal weaknesses as well as your strengths. Children on the spectrum have many fantastic qualities, including being honest, reliable, interesting and having a strong sense of social justice. They need to learn that they are valuable human beings with valuable contributions to make to this world. However, they also need to learn about their diagnosis, the challenges that come with this diagnosis, what they need to overcome these challenges, and how to go about getting them (e.g. being able to tell their teacher “I find it difficult to listen to you when that light is flickering, can we please turn it off?”. This does not have to be done in one big difficult conversation. Start talking about difference early. Read books about autism with them geared for their age and ability level. Make links with groups like the Autism Self Advocacy Network. Introduce them (through books, TV or the internet) to role models who have a disability. One of the best things that you can do to develop your own understanding of autism is to read books by authors on the spectrum, they have a lot to teach us. 

 These tips were put together for the Psychological Society of Ireland to highlight World Autism Day today 2nd April. For more information see my book ‘Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders‘ published by Jessica Kingsley.

Sexuality, Sex Education and Autism: A Research Review

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There is currently a serious lack of research relating to sexuality, sex education and ASD. Out of under 40 published studies between 1992 and 2013, just half constitute research studies, five of which are case studies. Most aim to investigate whether people with ASD display sexual behaviors or have sexual knowledge. However, the bulk of the research only looks through the eyes of others (e.g. parents or caregivers) and so must be taken with a very large pinch of salt.

Methodological and validation challenges are also common, with issues including small sample sizes, lack of control groups and randomization and questionable data analysis. In many, the aims are unclear, bias is not critically examined and there is a general lack of discussion about the appropriateness of the research design. The studies also vary in their topics, participants and methodology meaning that generalizability is limited and there is a significant male sexuality bias (perhaps understandable given the male: female ratio within ASD). Some studies make the distinction between subjects who are low or high functioning (apologies for using those awful labels) but little argument is given to the nature of ASD, i.e. how different individual presentations can be despite these labels and how inconsistently these labels are attributed. There are also issues with the case studies, which focus on low incidence, complex issues (often contextualized as ‘problematic sexual behaviors’) which are not put into context of the general population or even people with ASD.

However, there are a few studies which are methodologically robust (Mehzabin and Stokes 2011; Nichols and Blakeley-Smith 2010; Stokes and Kaur 2005; Stokes, Newton and Kaur 2007; van Bourgondien et al. 1997) and others that are valuable in terms of increasing knowledge in an under-researched field (Ballan 2012; Hatton and Tector 2010; Ray et al. 2004). Although not a research study, Gougeon’s (2010) ‘Sexuality and autism: A critical review of selected literature using a social-relational model of disability’ deserves credit as a well written and thoughtful summary of the relevant research.

So What Can Be Learned From the Research Base?

  1. People with ASD display typical sexual needs, a wide variety of sexual behaviors, wish to engage in intimate relationships and are neither hypersexual or asexual.
  1. People with ASD can display what are often considered ‘problematic’ sexual behaviors.This appears to be largely due to dificulties with social and communication skills.
  1. There is insufficient availability of suitable materials designed for parents, professionals or individuals themselves for those looking to support the development of a healthy sexuality and intimate relationships in children or adults with ASD. (If you are looking for what materials are available, check out http://www.autismsexeducation.com)
  1. There are societal barriers in place that prevent sexuality and relationship education from happening.
  1. Caregivers are aware of, and concerned for, the sexual needs of their children. Primary concerns noted by parents thus far surround their children’s safety and others’ understanding of their behaviors. Ballan (2012) reported that parents expressed a strong desire to communicate with both their children and professionals about sexuality, with the majority indicating that they would like to learn from professionals how to better communicate with their children about sexuality issues.
  1. Individuals with ASD have difficulty translating theory into practice, i.e. using the information that they have received about sexuality, relationships and appropriate behaviors in their everyday lives. Therefore, they may be aware of sexual terminology, but do not display a complex understanding of these terms. This gap between knowledge and practice can be a common difficulty for many people on the ASD spectrum.
  1. There is a demonstrated need for evidence based sexuality and relationship education programs and in particular parent sexuality training programs. Therefore, for systematic and proactive sex education to be provided, the needs of parents and teachers should be addressed, alongside the needs of children with ASD. However, while much of the research conducted thus far indicates the need for sex education, by the nature of the research and the language used the studies also concurrently perpetuate the stigma of sexuality as a problem in need of management.
  1. As is the case for individuals with ID, the sexual rights of individuals with ASD are routinely denied.
  1. Lastly, a consistent finding is that the sexuality of individuals with ASD is addressed from a problem based, deficit, perspective. Sexual ‘problems’ are questioned within a framework of deviancy and a discourse of fear pervades. Terms such as ‘obsession,’ ‘stalking,’ and ‘fierce attachment’ are routinely used (as opposed to ‘falling in love’ or ‘having a crush’), implying a pathological quality to how a person with ASD behaves and feels, rather than behavior that may be arising from a lack of experience and immaturity compared to their peers.

References:

  1. Ballan, M. (2012) ‘Parental perspectives of communication about sexuality in families of children with autism spectrum disorders.’ Journal of Autism and Developmental Disorders 42, 5, 676-684.
  2. Galluci, G., Hackerman, F. and Schmidt, C.W. (2005) ‘Gender Identity Disorder in an Adult Male with Asperger Syndrome.’ Sexuality & Disability 23, 1, 35-40.
  3. Gilmour, L. Schalomon, P.M. and Smith, V. (2012) ‘Sexuality in a community based sample of adults with autism spectrum disorder.’ Research in Autism Spectrum Disorders 6, 1, 313-318.
  4. Griffin-Shelley, E. (2010) ‘An Asperger’s adolescent sex addict, sex offender: A case study.’ Sexual Addiction and Compulsivity 17, 46-64.
  5. Haracopos, D. and Pedersen, L. (1992) ‘Sexuality & Autism, Danish Report.’ United Kingdom. Society for the Autistically Handicapped. (unpublished)
  6. Hartman, D. (2013) ‘Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders: A Professional’s Guide to Understanding, Preventing Issues, Supporting Sexuality and Responding to ‘Inappropriate’ Behaviours.’ Jessica Kingsley Publishers: London.
  7. Hatton, S. and Tector, A. (2010) ‘Sexuality and Relationship Education for young people with Autistic Spectrum Disorder: Curriculum change and staff support.’ British Journal of Special Education 37, 2, 69-76.
  8. Hellemans, H. et al. (2007) ‘Sexual behavior in high-functioning male adolescents and young people with Autistic Spectrum Disorder.’ Journal of Autism and Developmental Disorders 37, 260 – 269.
  9. Hellemans, H. et al. (2010). ‘Sexual behavior in male adolescents and young adults with Autism Spectrum Disorder and Mild/Borderline Mild Mental Retardation.’ Sexuality and Disability 28, 93-104.
  10. Kalyva, E. (2010) ‘Teachers’ perspectives of the sexuality of children with Autism Spectrum Disorder.’ Research in Autism Spectrum Disorders 4, 433-437.
  11. Konstantareas, M. and Lunsky, Y. (1997) ‘Sociosexual knowledge, experience, attitudes and interests of individuals with autistic disorder and developmental delay.’ Journal of Autism and Developmental Disorders 27, 397-413.
  12. Mehzabin, P. and Stokes, M. (2011) ‘Self-assessed sexuality in young adults with high functioning Autism.’ Research in Autism Spectrum Disorders 5, 614-621.
  13. Nichols, S. and Blakeley-Smith, A. (2010) ‘I’m not sure we’re ready for this…: Working with families towards facilitating healthy sexuality for individuals with autism spectrum disorders.’ Social Work in Mental Health 8, 72-91.
  14. Ousley, O. Y. and Mesibov, G. B. (1991) ‘Sexual attitudes and knowledge of high functioning adolescents and adults with autism.’ Journal of Autism and Developmental Disorders 21, 471-481.
  15. Ray, F., Marks, C. and Bray-Garretson, H. (2004) ‘Challenges to treating adolescents with Asperger’s syndrome who are sexually abusive.’ Sexual Addiction and Compulsivity 11, 265-285.
  16. Realmuto, G. M. and Ruble, L. A.  (1999) ‘Sexual behaviors in autism: Problems in definition and management.’ Journal of Autism & Developmental Disorders 29, 2, 121 – 127.
  17. Ruble, L. A. and Dalrymple, N. J. (1993) ‘Social/sexual awareness of persons’ with autism: A parental perspective.’ Archives of Sexual Behavior 22, 3, 229 – 240.
  18. Stokes, M. and Kaur, A. (2005) ‘High-functioning Autism and sexuality: A parental perspective.’ Autism 9, 3, 266 – 289.
  19. Stokes, M., Newton, N. and Kaur, A. (2007) ‘Stalking, and social and romantic functioning among adolescents and adults with Autism Spectrum Disorder.’ Journal of Autism and Developmental Disorders 37, 1969-1986.
  20. Tissot, C. (2009). ‘Establishing a sexual identity: Case studies of learners with Autism and learning difficulties.’ Autism 13, 6, 551-556.
  21. van Bourgondien, M., Reichle, N. and Palmer, A. (1997). ‘Sexual behavior in adults with autism.’ Journal of Autism and Developmental Disorders 27, 113-125.

Friends Are Important Too

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Current research indicates that social functioning is the only significant influence on level of romantic functioning in adolescents and adults with ASD, in itself dependent on learning from peers. This means that without a good level of social functioning (or peers to learn from), children with ASD may be left without even the foundation required for more complex romantic relationships.

Sexuality and Relationship Education (SRE) should never be taught in isolation. The intimacy of sexual relationships is not separate to the intimacy of social relationships. Good SRE will focus on teaching children about all the different kinds of relationships that can exist, starting initally with family and friendship. It will also be linked to a systemic and holistic social skills program that supports children in developing and maintaining social relationships.

As always, teaching should be positive in focus, respectful and empathic to inherent difficulties and individualised to the child. However, one important note on social skills programs: social skills will not develop or generalize unless the child is supported in developing these skills in the real world, through real world social situations. Worksheets in an isolated classroom do not a social skills program make.

References:

Stokes, M., Newton, N. and Kaur, A. (2007) Stalking, and social and romantic functioning among adolescents and adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 37, 1969-1986.

Visuals to Support Sex Education for Children with Autism

2013-03-28 13.14.22-2Currently, one of the biggest obstacles to doing sexuality and relationship education with children with ASD is the terrible lack of resources. As most people on the spectrum are visual learners, they need visuals (or pictures) to help them learn best. This is all well and good for other areas of a child’s curriculum but finding suitable pictures to represent for example healthy bodies or relationships is difficult at best as they need to be visually simple, realistic yet age appropriate. It is of course possible to trawl through Google to find appropriate pictures but this can take time and usually involves NSFW (not safe for work) material. I also would not advise doing these searches with the child present!

I am currently working on a series of picture books to support pre-teens and young adults in the area of sexuality and relationship education, which are due to be published this year through Jessica Kingsley. However, in the meantime, here are a list of places where you might find something useful. Remember that you should be using the type of visuals that the child is already using, which might be photographs, colour illustrations or black and white line drawings.  It makes no sense to make sex education even more conceptually difficult for a child by suddenly using a style of visual that they are unused to or is too developmentally complex for them.

FYI links to all of these resources can also be found on my website www.autismsexeducation.com.

FREE RESOURCES

1.  Visualaidsforlearning is an excellent and free online collection of pictures and social stories. Highly recommended for professionals and parents. Among other useful collections, it contains an ‘Adolescence’ pack which includes topics such as wet dreams, sexual feelings and menstruation.

2.  From Image in Action, Going Further is a free Sex and Relationships Education course for learners aged 16+ with a moderate learning disability or ASD attending colleges of further education. The course includes 12 sessions, with resources provided for each session. It also very helpfully includes some good, full page, illustrations of people clothed, in underwear and naked which could be used for other programmes.

3.   Managing Menstruation is a thorough information resource developed for females with intellectual and developmental disabilities. It is a bit dated but does include some black and white line drawing and contains great examples of how to use visuals.

4.   Bild (the British Institute of Intellectual Disabilities) has produced a free App called All About People to support adults with learning difficulties in the area of sexual and social relationships. The App consists of a comprensive list of clear, colour illustrations. This is a fantastic resource, although it is produced specifically for adults and therefore the illustrations obviously contain adults only. It could  be used to support older teenagers with ASD, however it is sexually explicit and therefore great care would need to be taken before use. To find it, search the iPhone or Android App store for ‘bild all about people.’

5.   The Playbook for Kids about Sex  is controversial in parts given the age of the children it is geared towards. However, full of visuals, it is a positive and useful resource. Made for children to fill in themselves, it is easy to pick and choose which parts you feel are appropriate for a particular child.

RESOURCES TO BUY  2013-03-28 13.14.40

1.   Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders. My own book. This includes lots of simple black and white illustrations (like the one to the right) both within social stories and seperate individually in the Appendix. See here for a sample chapter which includes visuals.

2012-10-04 10.01.562.  Boardmaker’s Communication about Sexuality package is a great resource if you are already using Boardmaker with a child, although I have to say that some of the visuals are quite advanced and abstract. Although you can buy the CD ‘stand alone’ and it is inexpensive, you need Boardmaker Studio or Boardmaker for Windows or Mac version 5 or higher to run it on your computer. It was developed specifically to prevent abuse and contains over 400 Picture Communication Symbols and 48 communication boards focusing specifically on the expression of sexuality. However, like all resources this may not be suitable for all children.

3.   From American Girl, The Care & Keeping of You: The Body Book for Girls is beautifully illustrated in colour. It includes information (and visuals) on topics such as hair care, braces, acne, bras, using tampons, nutrition, periods, exercise, feelings and body image. Similarly beautifully illustrated, The Feelings Book:The Care and Keeping of Your Emotions is also recommended.

4.   Secret Girls’ Business provide a range of colour illustrated books developed specifically for children with special needs to read themselves in the areas of puberty and relationships. Despite the name of the company, seperate books are provided for girls and boys. These books are highly visual and therefore suitable for children on the spectrum. See here and here for sample pages.

5.   Specifically developed for adults with disabilities and produced by David Hingsburger and Diverse City PressFinger Tips and Hand Made Love are video guides to be used for men and women who are having issues with masturbation. Only suitable for young adults or older teenagers, they include sexually explicit content that will need to be viewed and approved before showing. The accompanying books also include step by step photographic guides to masturbation. Other multimedia book and DVD guides are also available, including Under Cover Dick (for males) which teaches men with developmental disabilities to use condoms.

6.   Taking Care of Myself: A Healthy Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel. A very practical book, consisting mostly of simplified visual social stories and some activities mostly based on visual scheduling, matching and sorting. However, the quality of the illustrations contained isn’t great.

7.  Beyond Words (a registered charity) produce a series of picture books called Books Beyond Words, which are a truly brilliant resource. Each book tells a story in pictures (i.e. there are no words at all) to help people with learning and communication difficulties explore and understand their own experiences, e.g. grief and abuse. Relevant to sex education include: Falling In Love, Jenny Speaks Out, Keeping Healthy Down Below, Looking After My Balls, Looking After My Breasts and Loving Each Other Safely.

8.   The author Robbie Harris has produced three excellent books in the area of sex education for typically developing children of different ages. They include lovely colour illustrations of a variety of different body shapes, including people in wheelchairs.

I hope you find something useful for you in this list, please do let me know if I have left out any good resources!

Some Randomly Inspired Sex Education Videos

For the past couple of days I have been trawling the internet looking for videos to support sexuality and relationship education for children with special needs. Something clear, straightforward and child friendly and preferrably free. No confusing talking condoms or scary graphics. Unfortunately, I bring you nothing useful.

I have had to trawl through some pretty horrific sights, and these are the only ones I found to be even vaguely suitable:

1. My Body Belongs to Me (With a puppet, not ideal as it is a conceptual barrier. Also no visuals).

2. My Body is My Body song (Which I quite like but again it doesn’t actually contain supporting visuals).

3. My Body Belongs to Me: An Aimated Short Film (Which is almost right but includes a very specific scenario of an uncle’s friend touching him which I don’t care for, especially as abuse so often happens with a trusted person. Also it is a bit wordy).

However, I did manage to have a few laughs along the way. So to make up for the lack of good resources in this post, and just for fun on a cold December day, here are a couple of quite hilarious in different ways sex education vidoes from days of yore:

1. The Story of Menstruation, as told by Walt Disney.

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2. Sex Education: from the Mario Brothers.

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Please don’t ever show this Mario Brothers video to a child with autism! Those are some scary sperm.

If anyone knows any suitable videos that they’d recommend, please do let me know.

Books Beyond Words

 

For anyone who hasn’t come across these already, Beyond Words (a registered charity) produce a series of picture books called Books Beyond Words, which are a truly brilliant resource. Each of their books tells a stories in pictures (i.e. there are no words at all) to help people with learning and communication difficulties explore and understand their own experiences, e.g. grief and abuse.Titles relevant to sex education include:

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A written storyline, guidelines and resources for supporters and professionals on the topic of each book are also provided. These books are fantastic for adolescents with ASD due their visual nature, which means that supporting adults can adjust their language depending on the language skills of the child without any text to distract.

However, they are designed for adults and so the illustrations are of course of adults. And while it is nice to see a range of realistic body shapes, I find some of the illustrations quite unattractive and therefore not very child friendly. But one of my bugbears in life is how poor the illustrations are in resources and books for children and adults with special needs, so this could be just me being fussy! If they get the message across is a way that the child enjoys and understands then this of course doesn’t matter at all. 

 

Assessing Sexual Behaviours in Children – Update

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I posted a while back about the South Eastern Centre Against Sexual Assault traffic light system for assessing children’s sexual behaviours. While this is a great resource, I recently discovered that the marvellous Brook charity has produced something similar but much better and more user friendly and accessible, its Traffic Light Tool. Brook’s website includes lots of information about the topic as well as guidance on how to use it. It also includes a kind of quiz with examples of the kind of situations that are witnessed by / reported to professionals working with children and young people which can be used as training exercises. Factsheets on all topics are easily printed in PDF format. This really is an excellent resource. 

Besides this tool, Brook (the UK’s largest young people’s sexual health charity) is an excellent organisation, whose resources are typically high quality, user friendly and evidence based. Their website is worth a check out. 

 

A recommended follow on Twitter and Facebook too.