Information Sheet Puberty and Autism Spectrum Disorders
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Information Sheet
Puberty and Autism Spectrum Disorders
Prepared by Autism Victoria, 2006. Reviewed April 2011
A time of mixed feelings When do I start to prepare?
When a child reaches puberty, families may view If your child shows an awareness of how older
this time with mixed feelings. It may be that of people are physically different to them, this is a
pride that their child is developing into an adult, great starting point for discussion. Noticing a
or families may view this period with trepidation, beard, breasts or underarm hair is a very tangible
feeling unsure of how to explain all the changes visual sign for a person with Autism Spectrum
to their child. For an adolescent with an Autism Disorder about difference to themselves. For
Spectrum Disorder, the physical changes that young children (eg. lower primary school) start to
indicate increasing maturity can be quite out of link these visual signs with ‘having an adult body’.
place with where the individual is at in other ‘The girl has those bumps on her chest because
aspects of their development, such as academic she is turning into an adult’. ‘The woman has the
and social skills. It can be a shock for parents to bumps because she is already an adult’. Showing
recognise that their child is developing an adult’s the child pictures of yourself at different ages to
body, without all the adult capabilities to see how you looked different can also be useful.
accompany this. As a clearer visual cue, line drawings of the body
and how it looks at different ages can be used,
What can my child understand about such as those in ‘Talking Together About Growing
the changes during puberty? Up.’*1
If your child has moderate to severe difficulties The child’s awareness of the differences can then
with language and abstract concepts, they will be gradually added to. For example, the next level
not need to know the reasons behind the of information about ‘the bumps on the woman’s
developmental changes that occur during chest’ could be discussing that these are called
puberty. Preparation for these individuals is less ‘breasts’, and the other alternative names for
about teaching when and why the changes will them. Next would be discussing that breasts
occur, and more around teaching appropriate develop for feeding babies when the woman is an
responses to the things that happen during say adult. The child should also learn that breasts are
menstruation and masturbation, eg hygiene a private area and are not able to be touched
during menstruation and privacy during without permission.
masturbation. These topics are covered later in For upper primary aged children, start to use the
this article. Also the book ‘Talking Together About word ‘puberty’, such as in “puberty is when a
Growing Up’1 has a curriculum for teaching child’s body changes into an adult body”, along
children about puberty which suggests different with pointing out that as an adult, you have
sets of exercises depending on the age and level already been through this. Then, when the child
of ability of the child. notices physical differences in other people, this
can be discussed in the context of ‘puberty’. From
Autism Tasmania 1300 288 476 autismtas.org.au 1.
an understanding of the differences in others, the very ill because things are changing with their
individual can then begin to understand the body.
transition from child to adult. They can be taught
How do I explain the changes to my
about the changes to expect in their own body,
and the reasons behind these. Do this explicitly, child?
as just because an individual with an Autism Given the strength in visual skills for individuals
Spectrum Disorder sees how things are for others, with Autism Spectrum Disorder, the information
doesn’t necessarily mean they will generalise this about body changes in puberty is best given in a
to their own situation. Therefore make clear visual way. A social story*4 is the ideal format for
statements like ‘as you change into an adult, you this. A social story can be personalised to the
will also have underarm hair’. individual adolescent, and a separate social story
Other commonsense information that will need can be written for each of the body changes the
to be explained to the individual with Autism individual can expect. A title such as ‘I am
Spectrum Disorder is the fact changes in their growing into a man/woman’ can be used. Lots of
bodies will only be those associated with the descriptive sentences can be used to clearly state
same sex (eg. a boy will not begin to grow the facts. Here are some examples of topics that
breasts). For a child who is anxious as part of will need to be covered in the social stories.
their Autism Spectrum Disorder diagnosis,
covering misnomers that the child may think, but Topics for puberty social stories for
not express is important so that the child does girls:
not worry in silence (eg the child may think the
whole body eventually becomes progressively
breast development and widening of the hips
(could be titled ‘the shape of my body will
covered in hair like a werewolf. Therefore explain
change’)
that extra hair just grows on the underarms and
pubic area in women, and also on the chest and pubic and underarm hair development (title
chin of a man). ‘extra hair will grow”)
Some parents may delay discussions because onset of menstruation (title ‘I will begin to
they feel advance preparation may contribute to have my period’)
their child’s anxiety. Because it is never certain at growth acceleration (title ‘I will get taller’)
what age puberty will begin, some parents don’t
want to confuse their child with information that Topics for puberty social stories for
may not be applicable for a while. It is suggested
boys:
that the child be given an approximate age range
in which to expect the changes, in order to help growth acceleration (title ‘I will get taller’)
reduce this uncertainty. The average age for girls pubic, underarm, and facial hair development
to begin puberty is 11, with the possibility that it (title ‘extra hair will grow’)
may begin as early as 8 years of age2. The average testicular and penile enlargement (title ‘my
age for boys to begin puberty is 12-13 years, body will look different’)
although it may begin as early as 9½ years of spontaneous erections, sperm production,
age3. wet dreams (title ‘my body will do new
The absolute latest time to begin discussions things’, or use simplified versions of these
about puberty is when the child first begins to terms as titles)
show the early physical changes of puberty, such voice deepening (title ‘my voice will sound
as breast buds in girls, or in boys, acceleration of different’)
growth (the boy appears to have ‘gangly’ arms
and legs). If children with an Autism Spectrum The booklet ‘Let’s Talk About Puberty’*5 gives the
Disorder are not prepared for the changes, they basis for information on all these topics, which
may become confused or frightened that they are can be adapted into a social story. The
Autism Tasmania 1300 288 476 autismtas.org.au 2information will need to be personalised to your in private, sexual consent, the act of intercourse,
child. The book ‘Talking Together About Growing and the importance of protected sex. The video
Up’ *1 has a useful appendix with ‘proper’ is intended for adolescent girls with special
terminology for body parts and occurrences learning needs. Although not autism specific, it is
during puberty, along with some commonly used still highly useful, as it shows clearly and visually
slang your child may hear from peers. Given the what all the concepts look like.
tendency for literal interpretation of language by
an adolescent with Autism Spectrum Disorder, it
is important to inform the child of such
synonyms, so that they can understand that
words like ‘boobs’ refer to breasts. Otherwise
they may be confused by the conversations of
their peers, and not think to ask for clarification.
Misunderstanding often breeds anxiety!
Incorporating a page in each social story with
alternative terms related to the story topic can
assist understanding.
Other resources to explain puberty
It is strongly recommended that parents view
Girls: the tape themselves before letting their
daughter watch it, so they can determine how
The development of breasts, pubic hair, and
much information to let her view. A young girl
menstruation management are all covered
of 10 being prepared for menstruation
visually in the book ‘Special Girls Business’6.
management may not need or understand the
Changes in mood are also discussed in this
information about contraceptive use and
resource that is bright and colourful, and
intercourse.
emphasises that the changes are a positive part
of becoming a woman. The book is aimed at Boys:
girls with special learning needs in general, not The video ‘Jason’s Private World’9 is an animated
specifically girls with Autism Spectrum Disorder, short video, in which the narrator, Jason takes
but it is still a very useful resource. Girls with adolescents step by step through the topics of
Asperger Syndrome may find the companion hygiene, masturbation in private, gaining sexual
volume ‘Secret Girls Business’7 more suitable, as consent, the act of intercourse, and the
they would have the ability to understand the importance of protected sex. The video is
concept of ovulation, and the purpose of intended for adolescent boys with special
menstruation. learning needs. Although not autism specific, it
Having some ideas to help with menstrual is still highly useful, as it shows clearly and
discomfort is advisable, as is representing these visually what all the concepts look like.
visually*. It is strongly recommended that parents view
The adolescent girl may not be able to self- the tape themselves before letting their son
regulate initially, but when you notice watch it, so they can determine how much
discomfort, consistently prompt using the visual information to let him view.
cues, and choice making, until she is able to do For both adolescent boys and girls, it is then
this independently. recommended that parents sit and view the
The video ‘Kylie’s Private World’8 is an animated videos with their child. Answer questions posed
short video, in which the narrator, Kylie, takes by the child as they arise, using the complexity of
adolescents step by step through the topics of the question as a guide to how in-depth the
hygiene, menstrual management, masturbation answer should be.
Autism Tasmania 1300 288 476 autismtas.org.au 3The book ‘Secret Boys’ Business10’ is a great be discussed with the adolescent’s GP as a
resource for adolescent boys with Asperger starting point.
Syndrome to explain puberty changes and some Most adolescents begin to be interested
associated emotions. romantically in the opposite sex (or same sex -
Emotional changes same sex romantic interest occurs with at least
the same frequency in people with Autism
The fluctuating hormones that are part of the Spectrum Disorder as those without). An
physical changes of puberty can lead to changes individual with Autism Spectrum Disorder may
in mood. It is important that the adolescent with act on such interest by becoming obsessed with
an Autism Spectrum Disorder understands that another adolescent (as they may with any other
good and bad feelings will come as part of topic of interest). The difference between this
changing into an adult body. Girls who are scenario and any other adolescent ‘crush’ is that
interested in logic and facts may be interested in the person with Autism Spectrum Disorder may
charting their own mood on a calendar to see if not be able to ‘read’ the cues from another
there is a cyclical pattern coinciding with their person as to whether the interest is reciprocal.
menstrual cycle. Having a collection of ideas to In this case, the young person with an Autism
help adolescent boys and girls when their mood Spectrum Disorder needs to have explicit
is low is recommended. Again it is recommended instruction about indications that someone likes
that these be represented visually*. you as opposed to not being interested
romantically.
Interested Not interested
giving strong eye- looking away
contact turning away
leaning forward to moving away
hear what is said looking unhappy
smiling having arms folded
‘flipping’ or touching not responding
hair when talked to
laughing at your
jokes
Many adults assume that puberty is a time of
other person
inevitable low mood for the adolescent. Some initiating
even think that depression is an expected part of conversation
going through puberty. Depression is different
An adolescent with Asperger Syndrome, due to
from normal mood fluctuations as part of
social immaturity, may not show this interest in
puberty and is characterised by low self-esteem,
others romantically until much later than their
a feeling of worthlessness and withdrawal from
peers, despite their sexual maturity. In this case
previously enjoyed activities.
the adolescent will need to be informed that
In addition, depression may be expressed by an
attraction to another person may happen in the
adolescent with Autism Spectrum Disorder by
future. The adolescent can be taught that
disturbances in eating and sleeping that are
feeling tingly when being near another person,
markedly different to usual behaviour, increased
and thinking about that person a lot of the time
agitation, or extreme lethargy which contrast
shows that this is happening. Talking to the
with the individual’s usual behaviour.
adolescent with Asperger Syndrome, even if
Depression is not a ‘normal’ part of transitioning
they are not experiencing this themselves can
to adulthood, and the above symptoms should
AmazeAutism
(Autism Victoria) 1300
Tasmania T: 1300 308 699
288 476 W: www.amaze.org.au
autismtas.org.au 4 4help demystify for them the change in their Using this format, other behaviours that must be
classmates’ behaviour from mainly same-sex done in private can also be discussed (eg.
interaction, to mixed interaction, with flirting, undressing, urinating, scratching private parts -
touching, and showing off for the benefit of specify all behaviours as generalisation often
potential girlfriends/ boyfriends. This may help does not occur naturally).
them make sense of what is going on around The individual with Autism Spectrum Disorder
them. This may also help them to understand must also be told that it is not necessary to
that behaviours such as teasing, playful masturbate every time you are in a private
punching, etc. may be an indication that one place. Wendy Lawson13 recounted in one of her
classmate is flirting with the other, rather than entertaining presentations several years ago the
an offence needing to be reported to the story of a young gentleman who had been
teacher, and punished! informed as part of his sex education that
masturbation was to be done in private places,
Social Expectations
such as the toilet. The same young gentleman
Puberty is usually a time of increased sex drive. became very unhappy and sore when he
Masturbation is a natural process of responding interpreted that to mean that each and every
to urges that are not satisfied with a mate. time he went to the toilet, he should
Adolescents with Autism Spectrum Disorder masturbate!
have the same needs in this respect as all other Although most adolescents notice their feelings
adolescents. A problem may arise when the of desire and ‘stumble’ upon the way to relieve
individual does not understand that this is an act such urges through masturbation, the individual
which people do in private. Preparation about with Autism Spectrum Disorder may not come to
doing this in a private place can be assisted by this realisation, and may need assistance to
the use of a social story, such as that found in understand how to respond to such urges. The
‘Annette Joosten’s Book of Cool Strategies’*11. A article ‘Sex education issues for the person with
private place is where other people cannot see Autism’*14 suggests some guidelines for teaching
you. Given the difficulty of individuals with masturbation to individuals with autism.
Autism Spectrum Disorder with ‘theory of Watching the appropriate parts of ‘Kylie’s
mind’12 (or perspective taking), the person may Private World’8 or ‘Jason’s Private World’9
not be able to identify a private place, even videos may also give a useful visual cue. Finally,
when given the above definition. Therefore, the picture schedule above* may be another
making a list of public versus private places, in visual means to complement the teaching of the
order to consolidate the concept is desired behaviour or routine.
recommended.
Increased manners and maturity
Private places Public places
A useful visual cue for individuals with high-
In my bedroom with All the other
functioning autism or Asperger Syndrome is the
the door and the rooms in the
step-by-step written procedure for appropriately
curtains closed house
responding to sexual urges described in
In the toilet with the School ‘Asperger Syndrome and Sexuality’*15.
door closed classrooms
Although inappropriate touching of self in public is
In the shower with In the shops of concern, parents will also need to help their
the bathroom door At other child understand where it is inappropriate to touch
closed
people’s others. Additionally individuals with Autism
In the school toilet
houses Spectrum Disorder will need to learn that others
with the door closed
In the car may not touch their private parts without consent.
In the shopping
At the park Such topics are covered in the book ‘Taking care of
centre toilet with myself’16 which uses social stories, and other visual
Etc.
the door closed strategies to assist in learning these concepts*.
Autism Tasmania 1300 288 476 autismtas.org.au 5Personal Hygiene 9. Life Support Productions, Kylie’s Private
World, video and support notes
This can be a concern for parents when their
10. Life Support Productions, Jason’s Private
child is going through puberty. Pubertal
World, video and support notes.
development with extra hair and newly active
sweat glands can lead to offensive odours, which 11. Angelo, F., Pritchard, H., and Stewart, R.,
the individual with Autism Spectrum Disorder Secret Boys’ Business
may not recognise are a cause for concern. The 12. Joosten, A., Annette Joosten’s Book of Cool
person may not recognise how they are Strategies . See the story - ‘My Body’
perceived by others, understand what is socially 13. Baron-Cohen, S., Mindblindness: An essay on
acceptable, or might be avoidant of self-care autism and theory of mind
tasks because of the sensory issues with brushing
14. Lawson, W., Sex, Sexuality and the Autism
teeth, and brushing or washing hair. The book,
Spectrum
‘Personal Hygiene - What does that have to do
15. Detmer, C., Dalrymple, N., and Sinex, L., ‘Sex
with me?,’ 17 may assist, as it contains a
education issues for the person with Autism’
curriculum for teaching children with Autism
Spectrum Disorder aged 8-14 years about the 16. Henault. I., Asperger Syndrome and Sexuality
importance of hygiene for social acceptance and 17. Wrobel, M., Taking Care of Myself
health. 18. Crissey, P., Personal Hygiene - What does that
None of us has a crystal ball to predict how an have to do with me?
individual will respond to the challenges of
puberty. An individual may require assistance
with all or none of the issues outlined in this
article. Being informed in advance may just mean
as a parent or carer there is not the element of
surprise and uncertainty as to how to approach
such challenges if they do arise. A useful contact
for further advice is Family Planning Tasmania
and the SoSAFE Program - 03 6273 9117.
Puberty Bibliography:
1. Scott. L, and Kerr-Edwards, L., ‘Talking
Together about Growing Up’
2. ACT Health Tipsheet, ‘Precocious Puberty in
Girls’, http://www.healthfirst.net.au/
3. ACT Health Tipsheet, ‘Precocious Puberty in
Boys’, http://www.healthfirst.net.au/
4. Gray, C., Social Story Kit
5. Down’s Syndrome Society of Scotland. ‘Let’s
talk about Puberty’, download at
©2014 Amaze (formerly Autism Victoria). This
6. www.dsscotland.org.uk/publications/ document has been published with the
learning-disability/talk-about-puberty.pdf permission of Amaze. Permission is granted for
7. Angelo, F., Pritchard, H., and Stewart, R. the content of this information sheet to be
Special Girls’ Business reproduced in its entirety, provided Amaze
(Autism Victoria) is acknowledged as the source
8. Angelo, F., Pritchard, H., and Stewart, R., and the website address is given:
Secret Girls’ Business www.amaze.org.au
Autism Tasmania 1300 288 476 autismtas.org.au 6You can also read
