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

Image

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.

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!