PUBERTY A GUIDE FOR TEENAGERS WITH AN AUTISM SPECTRUM DISORDER AND THEIR PARENTS

Acknowledgements

We would like to acknowledge the following organizations and individuals for their contribution to this project:

Latrobe University Project supervisor, Dr Diane Jacobs, Pauline Greenwood, Amanda Harris, Shelly Newton, and all the other parents of children with an ASD who generously shared their experiences but wished to remain anonymous.

Written by: Elizabeth Ford Gabriella Ptasznik Megan Blumberg Samantha Clayton Sara Beeching

Contents Introduction ...... 1

Physical Changes- Information for Parents ...... 2

What are the physical changes that occur during puberty? ...... 2 Talking to your child about puberty ...... 2 Strategies to use when talking to your child about Puberty ...... 3 Menstruation ...... 4 Strategies to prepare your daughter for her period ...... 4 Talking about ejaculation with your son ...... 4 Strategies to help your child with hygiene, including wet dreams ...... 5 Talking to your child about the importance of hygiene...... 5 Strategies to help your child develop healthy hygiene routines ...... 6 Masturbation ...... 6 Physical Changes- Information for Girls ...... 7 What is puberty? ...... 6 Physical changes for girls...... 7 Pimples ...... 7 Keeping clean ...... 7 Guide to showering ...... 8 What is a period ...... 8 Menstruation step by step ...... 8 Masturbation ...... 9 Guide to feminine hygiene...... 9 Physical Changes- Information for Boys ...... 10 What is puberty? ...... 10 Physical changes for boys ...... 10 Pimples ...... 10 Keeping clean ...... 10 Guide to showering ...... 11 Different dreams ...... 11 My penis ...... 11 Voice changes ...... 11 Masturbation ...... 11 Step by step masturbation...... 12

Social Changes- Information for Parents ...... 13 Social changes during puberty ...... 13 Social interest ...... 14 Strategies to help your child with social skill development ...... 14 Liking someone more than a friend ...... 15 Strategies to help your child with romantic relationships ...... 16 Stalking ...... 16 Strategies to help your child deal with stalking behaviours ...... 16 Touch ...... 16 Strategies to help your child deal with good touch verses bad touch ...... 17 Masturbation management and private verses public places ...... 17 Strategies to help your child with private verses public places ...... 19 Social Changes- Information for Adolescents ...... 20 Liking someone differently to how you like a friend ...... 20 Signs that people show when they are your friend ...... 20 Signs of disinterest ...... 20 Stalking ...... 21 Defining touch ...... 21 Things that should be done in private with no other people around (girls) ...... 22 Things that should be done in private with no other people around (boys) ...... 22 Masturbation management ...... 23 Places that are okay to masturbate ...... 23 Places that are not okay to masturbate ...... 23 Circle of friends activity ...... 24 Emotional Changes- Information for Parents ...... 25 Mood changes ...... 26 Emotional awareness and regulation ...... 27 Strategies to help your child distinguish between different emotions .. 28 Regulating mood ...... 29 Strategies for helping your child to regulate their mood ...... 29 The Alert Program ...... 29 Understanding the emotions and perspectives of others ...... 30

Strategies for increasing empathy and understanding of other people‟s perspectives ...... 31 Depression ...... 31 Symptoms of depression in neurotypical individuals ...... 32 Possible behaviours reflective of symptoms of depression in individuals with an autism spectrum disorder ...... 32 Strategies to help lowered mood in adolescents with an autism spectrum disorder ...... 33 Anxiety ...... 33 Strategies for parents to decrease anxiety-provoking situations for individuals with an autism spectrum disorder ...... 34 Girls- PMS and emotional changes ...... 36 Strategies for managing the emotional symptoms of PMS ...... 36 Anger, aggression and problematic behaviours...... 36 Factors that may cause/worsen aggressive or problematic behaviours ...... 37 Strategies for managing problematic behaviours ...... 38 Medications to manage problematic behaviours...... 38 Self-identity and self-esteem ...... 39 Strategies to encourage self-identity and self-esteem ...... 40 Bullying ...... 41 Strategies to manage bullying ...... 41 Emotional Changes- Information for Adolescents ...... 43 Understanding personal emotions – Happiness ...... 43 Understanding personal emotions – Sadness ...... 43 Understanding the emotions and perspectives of Others ...... 43 Managing Behaviour – Becoming angry ...... 44 Visual schedule: When you get angry or frightened ...... 44 Visual schedule: When you feel worried or nervous ...... 44 Managing PMS ...... 45 Managing Bullying ...... 45 Increasing self-identity and self-esteem ...... 45 Useful Contacts ...... 46

References ...... 47

Introduction

This resource has been developed to provide parents, families, friends and caregivers information to assist teenagers with an Autism Spectrum Disorder (ASD), including Asperger‟s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) to recognize and manage the emotional, physical, and social issues that individuals diagnosed with an ASD will encounter during puberty.

An individual with an ASD may present with a diverse range of needs and skills. To produce a single resource to meet the needs of all individuals with ASD is not feasible. Therefore the information provided in this resource has been developed for both male and female teenagers who have a diagnosis of high-functioning autism spectrum disorder (HFASD), which is a diagnosis of ASD combined with a full scale intellectual quotient (FSIQ) greater than or equal to 70. However, information has been provided throughout the resource that can assist parents, families, friends and care-givers to tailor the resource to meet the needs of their teenager with ASD regardless of intellectual capacity.

This resource has been designed to fill the gap that has been found to exist in current information and data. Investigations determined that the vast majority of the information available regarding changes in adolescence for the HFASD population was a) directed to professionals, parents, and care-givers of teenagers with an ASD, and b) discussed predominately physical changes and masturbation. In addition to investigating the available research literature, 13 parents of both male and female adolescents with a diagnosis of an ASD were interviewed. These interviews identified that parents had difficulty discussing puberty with their child, particularly the associated physical changes in a way that was meaningful to adolescent with an ASD. Parents also highlighted concerns regarding a focus on negative or problematic issues relating to puberty and adolescents with an ASD. All parents reported that being able to easily access an appropriate resource addressing the physical, emotional, and social changes would be of great benefit. Introduction Information in this resource has been divided into three sections – Physical, social and emotional. Each section is prefaced for the parent or care-giver with specific details on each area of change during puberty, how to use the resource and adapt it to each teenager‟s specific needs and skill level. This is followed by information directed to the teenager with ASD, including visual schedules and descriptive stories.

1 PHYSICAL CHANGES- milestones occur in the same succession for all individuals; however, INFORMATION FOR the age at which they occur often PARENTS varies significantly (Marieb & Hoehn, The physical developments (sexual 2007). and body changes) that occur during adolescence occur alongside For males, the major event that important psychological and social proclaims the onset of puberty is the changes that mark this period as a enlargement of the testes and scrotum critical stage towards becoming an between the ages of 8 and 14 (Marieb adult (WHO,2011). The continuity of a & Hoehn, 2007). Following this, the familiar routine is vital for individuals penis starts to grow and the young with an Autism Spectrum Disorder man will start to become sexually (ASD) as they have particular difficulty mature. This is frequented by coping with change. Thus, in order to unexpected and often embarrassing relieve the pressure and stresses of erections and „wet dreams‟ (sexually understanding the changes that are orientated dreams which cause the taking place it is essential young man to emit semen during his to explain sleep) as a consequence of surging to your levels of testosterone. child the processes For females, the initial sign of puberty that are is evidenced by budding breasts which occurring appear between the ages of 8 and 13 during this (Marieb & Hoehn, 2007). This is followed by armpit and pubic hair. The time. young woman‟s first period may occur approximately two years later. This material is designed to assist you and your child with… 1. Understanding how the body Talking to your child about puberty changes during puberty, including: Typically, the time at which an  General body changes adolescent, even without an ASD,  Menstruation goes through puberty can be stressful  Masturbation for all family members. Although, when 2. Understanding good hygiene a child has an ASD, these stressful practice times are compounded and may become more complex. (Artclesbase 2008). Physical What are the physical changes that As a parent, it is common to wonder occur during puberty? when the appropriate time is to During the pubertal years, a group of commence discussions regarding interacting hormones cause the puberty with your child. However, changes of puberty. Puberty marks the

children with an ASD commonly need Changes period when the reproductive organs a longer period of time to comprehend grow to adult size and start to become and accommodate themselves to any functional. This occurs due to rising changes that occur in their lives. Thus, levels of testosterone in males and according to your child‟s specific oestrogen in females. Pubertal

personality, you will need to decide

2 Physical

Changes

how much preparation time he/she  If you notice that your child needs to understand the changes frequently asks questions at associated with puberty (The National inappropriate times, it may be Autistic Society, 2011). helpful to establish a fixed response, which can be utilized by all family members. For 6 To ensure that your child is example, a response may adequately prepared for the include; „That‟s a fantastic changes that will occur/ are question, but let‟s talk about it occurring, you may inform your child when we are at home‟ (National from a young age that you are Children‟s Bureau, Sex always available to talk about any Education Forum, 2003). Ensure questions he/she might have that you do revisit your child‟s regarding their body. This will serve question when you return home, to highlight that pubertal changes otherwise your child may be are part of a normal occurring hesitant to ask you questions in physical process and he/she should the future (The National Autistic not be ashamed. These preparatory Society, 2011). conversations will also help maintain your child‟s self confidence  Always answer in a positive tone (The National Autistic Society, so that your child feels 2011). comfortable to approach you again (Autism Society of America, 2011).  When explaining different female Strategies to use when talking and male body parts be sure to to your child about puberty use the correct medical terminology as abstract concepts  Expect your child to ask a variety of awkward „why‟ questions. It is are particularly difficult for many particularly important with individuals with an ASD to children with an ASD that you try comprehend (Autism Society of and stay patient and sensitive America, 2011). when answering their questions.  Ensure that you frequently (National Children‟s Bureau, Sex remind your child that he/she Education Forum, 2003). should be happy with their body.  Always be honest with your child.  It is helpful to view puberty as It is also okay to just say „I don‟t just another step of your child‟s know‟ or „how about we look it up developmental process. Physical together‟ (The National Autistic Welcome and celebrate this time Society, 2011). and proceed forward in your  Make sure you are 100% certain future together (Autism Society of with your answer as you may America, 2011).

Changes confuse your child even more by not providing a clear and accurate response (The National Autistic Society, 2011).

3 MENSTRUATION  Make a mark on your daughter‟s Menstruation (when a underwear to indicate exactly girl gets her period) is where the sanitary pad should be the principle stage of placed in her underwear. female puberty. It is one of several physical  Go to the supermarket with your signs that a girl is daughter and ask her to choose a developing into a grown variety of different sanitary pads woman. Your daughter with you. may be excited or even  Watch a video about feel afraid or anxious menstruation online; prior to getting her first http://kidshealth.org/teen/sexual_ period. During health/girls/ adolescence, most girls have very little understanding of how  When your daughter gets her first the reproductive organs function which period, plan a party to celebrate causes this change to be even more her entry into womanhood. confusing (Kids Health, 2011).

It is important that your Talking about ejaculation with daughter is aware and your son prepared for her period. As mentioned earlier, one of the main indications that your son is going through the puberty is the noticeable enlargement of the Strategies to make sure that scrotum and testicles (Marieb & your daughter is prepared for Hoehn, 2007). As your son her period progresses through puberty, the (Autism society of America, size and shape of his penis will 2011) develop along with his sexual maturity (Autism Society America, 2011). During puberty, your son  Use red food dye in your may have erections at peculiar or daughter‟s underwear to mimic unexpected moments and will what the blood may look like also begin to ejaculate semen. when she does begin to get her Initially, many boys are unsettled period. when they see the appearance of  You may like to describe a semen for the first time, however

sanitary napkin as a very large you should reinforce to him that Physical bandage. this is a normal step of puberty and will eventually stop (Autism  Use the visual aid provided to Society America, 2011). describe the steps involved in

changing a sanitary pad.

Changes

 A female should model the steps involved in wearing and changing a sanitary pad.

4 While talking to your son  Ensure that you use a calm and about erections may be sensitive voice when explaining an awkward and what has happened (Autism uncomfortable topic to Society America, 2011). approach, especially if your child has an ASD, it is  Relate „wet dreams‟ and erections imperative to explain these to the other changes he is noticing events prior to them with his body during this time. occurring. Remind him that all these changes are normal and help him grow into a man (Autism Society America, Strategies to help your 2011). child with hygiene, including wet dreams Talking to your child about the  The majority of Individuals with an importance of hygiene ASD have greater strength in Accompanying the aforementioned learning with visual material. physical pubertal changes that occur Therefore, you may find it useful to both young females and males to take pictures that relate to some comes new and often unfamiliar daily of the steps that are included in hygiene routines. Thus, educating the visual aid in order to ensure adolescents about hygiene skills is that the aid is as familiar and pivotal as they learn the importance of effective as possible. Once you modesty, responsibility and self-care. have taken the appropriate photo This is especially crucial throughout you may want to stick them beside puberty as cleanliness is a contributing the steps already provided. For element to their health and self- example, it may be useful to take confidence. a photo of your child putting on deodorant or washing their face.

 Use the tailored tales provided in this resource to discuss the basic physical changes that occur with puberty.

 Remind your son that ejaculation, „wet dreams‟ and masturbation are all perfectly normal (Autism Society America, 2011).

Physical  When your child has an erection or a „wet dream‟ it is likely that he Establishing strong hygiene is unaware of what is happening routines are a vital life skill. to him. Thus, it is important to not However, for many individuals with an overreact or underreact (Autism ASD, developing these habits may be

Changes Society America, 2011). When this complicated and difficult. Moreover, occurs, change the sheets children who do not have an ASD are together and use the tailored tales naturally unreceptive to a child with provided to explain what has poor hygiene. Consequently, your child happened. with an ASD may experience further

social ramifications, such as a child

5 teasing your son/daughter that he/she to having friends

smells bad. It is for these reasons that may encourage Physical ensuring your child forms healthy your child to focus hygiene routines is critical. on complying to a healthy hygiene routine (American

Strategies to help your child Autism Society, Changes develop healthy hygiene 2011). routines  Be sure to be specific and precise when communicating with your

 Use the visual aids provided to child. For example, reiterate that if help show your child a healthy your child smells like sweat, hygiene routine in a sequential people will not want to be around format. him/her (American Autism Society, 2011). 9  Model the steps of the visual aid for your child. MASTURBATION  Place the visual aid in the location A behavioural result of surging where they are most likely to be testosterone and oestrogen levels in used. For example; place the young males and females is showering visual aid on the masturbation. Don‟t be alarmed if your bathroom wall or on the outside of adolescent child masturbates as it is a the shower. perfectly normal and expected behaviour.  Associate hygiene behaviours and routines to something concrete. It is best to assure him/ her For example, highlight the that this is normal and significance of personal hygiene to encourage him/her to your child by explaining that in masturbate in a private place. If you order for him/her to have friends, notice that your adolescent child is he/ she needs to make sure they masturbating constantly you should stay clean (American Autism seek help from your family doctor. Society, 2011). You may continue by stating exactly what needs to be done for this to occur. For Additional strategies and example; brush your teeth every information regarding how to talk morning and before you go to bed, to your child about masturbation have a shower every day and wear are provided in the social section of Physical deodorant. this resource. When explaining masturbation to your child use the  To ensure that your child changes tailored tales provided in this section. their behavior or forms an ideal

behavior, highlight to your child Changes why they should care about their personal hygiene. This will give them motivation to want to change. For example, relating staying clean

6 PHYSICAL CHANGES- BODY CHANGES My body shape will change. INFORMATION FOR ADOLESCENT GIRLS HEIGHT I will grow taller WHAT IS PUBERTY? HIPS My hips will widen I once was a child but now I am

growing up. My body is changing as I GROWING BREASTS become an adult, this is called puberty. I will notice small bumps underneath Pubertal changes are different for boys my nipples which may feel slightly and girls. tender. My breasts will continue to grow and I will need to wear a bra. A PHYSICAL CHANGES FOR GIRLS bra will support my breasts. I was once a baby, then I was a girl. I am now an adolescent, which means GROWING HAIR I am becoming a woman and I will I will grow hair in places where there notice some changes with my body. was none. I will start to grow hair on my private areas and under my arms. In the beginning my hair may be thin and soft but as I grow older it may get thicker. I may want to shave the hair under my armpits. This may help me in keeping this area clean.

PIMPLES When I am growing up I may notice red spots on my face, these are called pimples. I can wash my face to keep my skin clean. I may need to put some cream on my pimples, this may feel different, that is ok. It is best if I leave these spots to go away.

KEEPING CLEAN Childhood During Adulthood I will notice that I am sweating more Puberty Physical than I use to because my sweat glands Pubertal changes may occur at are becoming more active. Sweating is varying rates and times. Your child when my body releases small amounts needs reassurance that these changes of fluid in order to make sure I am not are normal and they may not develop too hot. I may notice this when it is hot

Changes at the exact same rate as their friends outside, when I am nervous or when I (Better Health, 2011) am playing sport. Most people dislike the smell of sweat, so I need to make sure that I wash myself every day. After my shower, I should use

deodorant under my arms. This may feel strange and different, that is ok.

7 Deodorant will help stop my body period every 28 days, sometimes it

smelling badly. I can also carry may be sooner or later, this is ok. Physical deodorant in my bag just in case I feel When I get my period blood comes out that I am sweating too much and I am through my vagina. A few days before starting to smell. I get my period I may feel more upset about things; I might feel angry, I might

STEP BY STEP IN THE SHOWER feel sad, I might feel frustrated or I Changes FOR GIRLS might feel other emotions. 1. I will wash my face, arms, Feeling this way is normal and usually stomach, feet and legs with stops when my period starts. soap and a face-washer My breasts and stomach may feel sore

2. I will wash under my armpits at this time. This is normal. Placing a with soap hot water bottle on my stomach and 3. I will wash around my vagina having some pain relief medication with soap may help me feel less sore. 4. After the shower: 8  I will dry my armpits with If your child experiences any of a towel these emotional changes  I will dry my vagina with a mentioned above, please refer to towel the “emotional” section of this  I will put deodorant under resource. my armpits If your child experiences pain, 5. I will get dressed into clothes please amend as appropriate, that are clean. e.g. heated wheat bag for hot water bottle etc. The above routine may be adapted for your child specifically. For I may have my period for 4 to 7 days. It example, if your child performs may be shorter, that is okay. If it is other routine based activities during/ longer than 7 days I will talk to an adult after her shower time ie. Using that cares about me. When I first get pimple cream or putting her towel in my period it may only come every few the laundry, this may be added. months but as I get older it may come more regularly (Better Health, 2011). You may find it useful to take pictures I will need to use a pad or a tampon so that relate to some of the steps that my clothes don‟t get stained. These are included in the visual aid in order come in many different shapes and to ensure that the aid is as familiar and sizes. effective as possible. Once you have Periods are private. I may want to talk taken the appropriate photo you may about my period with my good friends want to stick them beside the steps and parents. This is ok. I should only Physical already provided. For example, it may talk to these people about my period. be useful to take a photo of your child putting on deodorant or washing their MENSTRUATION STEP BY STEP: face. I will change my pad at least every four

hours. Changes WHAT IS A PERIOD? I will wash my hands. As my body changes and I become a I will go to the toilet and close the door. woman I will get my period. I will pull down my underwear and sit A period is also known as on the toilet. menstruation. Most women have a

8 I will take the dirty pad off my me too, I need to make sure that the underwear. person I am touching likes it as much I will wrap the dirty pad up in toilet as I do. paper. I will put the dirty pad in the bin. Additional information I will un-wrap a clean pad. regarding good touch and I will take the sticky strip off. bad touch is included in I will stick the clean pad in my the social section of this underwear. booklet. I will wipe my vagina with toilet paper. I will pull up my underwear. I will wash my hands.

If your child prefers to use tampons, you may create your own similar step by step guide in order to assist your child with this process. Assure your child that everyone is different and every girl‟s period may be longer or shorter than her own.

It may be useful to accompany this step by step guide with relevant pictures or photos, of your daughter‟s choice to practically guide her through this process.

MASTURBATION As my body changes, I will start to feel new sensations that feel nice. I may touch parts of my body because it feels good. This is okay. This is private and should be done only in a private place. For example; my bedroom with the door closed or my bathroom with the door closed. Other people may dislike me talking about masturbation, so I will keep it private.

STEP BY STEP MASTURBATION

Physical FOR GIRLS: 1. Close my room door 2. Close my blinds 3. Touch myself where it feels nice 4. Clean my hands

Changes 5. Go out of my room

Although I enjoy touching myself and sometimes may enjoy others touching

9 PHYSICAL CHANGES- HEIGHT I will grow taller INFORMATION FOR ADOLESCENT BOYS MUSCLES I will grow muscles in my arms, legs, WHAT IS PUBERTY? chest and all over my body. This will I once was a child but now I am make me stronger and heavier. growing up. My body is changing so I can become an adult, this is called GROWING HAIR puberty. These changes are different I will grow hair in places where there for boys and girls. was none. I may start to grow hair on my face, private areas, under my arms, on my back and on my legs. The Pubertal changes may occur at hair on my body may grow thicker as I varying rates and times. Your child get older. needs reassurance that these changes are normal and they may The hair on my face may feel strange, not develop at the exact same rate this is ok. If it is uncomfortable I can as their friends talk to mum or dad about shaving with a razor and cream or with an electric PHYSICAL CHANGES FOR BOYS razor. If I don‟t shave the hair on my I was once a baby, then I was a boy. face I may grow a beard and I am now an adolescent becoming a moustache. man and I will notice some changes with my body. PIMPLES When I am growing up I may notice red spots on my face, these are called pimples. I can wash my face to keep my skin clean. I may need to put some cream on my pimples, this may feel different, that is ok. It is best if I leave these spots to go away.

KEEPING CLEAN I will notice that I am sweating more than I use to because my sweat glands are becoming more active. Sweating is when my body releases small amounts of fluid in order to make sure I am not

too hot. I may notice this when it is hot Physical outside, when I am nervous or when I am playing sport. Most people dislike Childhood During Adulthood the smell of sweat, so I need to wash Puberty every day. After my shower, I should

Pubertal changes may occur at use deodorant under my arms. This Changes varying rates and times. Your child may feel strange and different, that is needs reassurance that these ok. Deodorant will help stop my body changes are normal and they may from smelling bad. I can also carry not develop at the exact same rate deodorant in my bag just in case I feel as their friends (Better Health, 2011)

10 I am sweating too much and am my dad‟s, uncles, or grandfather‟s starting to smell. voice. When my voice first starts to change, it may sound squeaky or croaky. This is normal. Later my voice STEP BY STEP IN THE SHOWER may sound like a man‟s voice sounds. FOR BOYS 1. I will wash my face, arms, MY PENIS stomach, feet and legs with My penis will grow longer and thicker. soap and a face-washer My testicles (balls) will also get bigger. 2. I will wash under my armpits I will begin to have erections. This with soap means my penis will get larger and 3. I will wash around my penis with harder. Erections may happen at any soap time, this is normal, all my male friends 4. I will pull back the foreskin may also have this happen. I may gently and clean under it need to cover my erection. Other 5. After the shower: people would prefer it if I did this.  I will dry my armpits with a towel  I will dry my penis with a Ensure that your child understands towel that this may occur at any time or  I will put deodorant under place. However, he should know my armpits that this is normal and is expected 6. I will get dressed into clothes (Better Health, 2011). that are clean. DIFFERENT DREAMS The above routine may be When I am sleeping I may have a adapted for your child specifically. dream and when I wake up I might find For example, if your child performs that my sheets are sticky and wet, this other routine based activities is called a wet dream. When I have a during/ after his shower time ie. wet dream I should always wash my Using pimple cream or putting his testicles (balls) and penis when I wake towel in the laundry, this may be up. Wet dreams happen to lots of boys added. and men.

You may find it useful to take pictures that relate to some of the steps that Ensure that your child understands are included in the visual aid in order that this is normal and that when to ensure that the aid is as familiar and this occurs they know that their effective as possible. Once you have bedding and clothing should be

Physical taken the appropriate photo you may cleaned. This may be added into want to stick them beside the steps their hygiene routine. already provided. For example, it may be useful to take a photo of your child MASTURBATION putting on deodorant or washing their During these changes I will get new

Changes face. sensations which feel nice. I will get more erections and will want to touch my penis and other parts of my body VOICE CHANGES because it feels good. When I touch My voice may change. It may get myself I need to be alone and in a

deeper and start to sound more like private place with the door closed.

11

When I touch myself, semen might come out of my penis. This is normal. I should use tissues to clean myself and throw them in the bin when I am finished and then wash my hands.

STEP BY STEP MASTURBATION FOR BOYS: 1. Close my room door 2. Close my blinds 3. Touch myself where it feels nice 4. Clean my penis with tissues 5. Throw the dirty tissues in the bin 6. Clean my hands 7. Go out my room Although I enjoy touching myself and sometimes may enjoy others touching 11 me, I need to make sure that the other person that I am touching likes it as much as I do.

Additional information regarding good touch and bad touch is included in the social section of this booklet.

You may find it useful to take pictures that relate to some of the steps that are included in the visual aid in order to ensure that the aid is as familiar and effective as possible. Once you have taken the appropriate photos you may want to stick it beside the steps already provided. For example, it may be useful to take a photo of your child‟s room door

Physical or your child washing his hands.

Changes

1 2 SOCIAL CHANGES- For example, the vocabulary chosen, and the length of information contained INFORMATION FOR in tailored tales or visual aids (e.g. PARENTS charts, schedules) can be altered The transitions and changes that occur depending on the level that the during puberty can be a difficult time individual‟s parent or guardian feels for all adolescents and can be will be most appropriate. especially difficult for children with an ASD for various reasons. A number of changes will take place; in addition to SOCIAL CHANGES DURING the physical changes previously PUBERTY discussed in this resource, Individuals with an ASD typically adolescence is a time of social exhibit difficulty with social skills, thus change. Most children with an ASD impacting upon their ability to have difficulty adjusting to this establish meaningful social transformation (Teens Health, 2011). relationships with others (Morris, Thus, the continuity of a familiar 2008). For example, many routine is vital. In addition, explaining adolescents with an ASD may have the changes that will occur will make difficulty simply having a conversation this time of development easier. Using and understanding how others think this resource will assist adolescents and feel (Workforce Council, 2011). with understanding and coping with the changes that are occurring in their Please note: Not all adolescents evolving bodies and minds. with ASD will have difficulty building and maintaining This material is designed to work relationships. This may not apply to towards your child understanding your son/daughter. the following objectives… 1. Liking someone differently to how As a parent of an individual with an you like a friend ASD, it is normal for you to have 2. Signs of disinterest concerns regarding your child‟s social 3. Defining touch functioning, particularly during 4. Who is appropriate to touch? puberty. It may be especially 5. Things that should be done in frustrating for you when you notice private for both girls and boys that your child is trying to create and Social Changes Social 6. Appropriate places to Masturbate maintain friendships, but is often 7. Circle of friends activity having difficulties (Workforce Council, 2011). During puberty, these social challenges are likely to be exacerbated as new social skills are Note: As there is a wide learnt during this time of development range of intellectual and (Morris, 2008). It is important for your communication levels between child to have a solid foundation of individuals with an ASD, the skills throughout puberty, such as information and strategies suggested knowledge of private versus public within this resource will need to be places, liking someone differently to customized to ensure that they can be liking a friend, signs of disinterest, easily understood by the individual.

13 signs of being more than a friend, others will be discussed later on in good touch versus bad touch, and this section. Signs of interest and knowledge of their circle of friends. signs of disinterest can be explicitly taught to children with an ASD using lists, examples, and pictures.

Strategies to help your child with social skill development

 Teach your child about body language and social cues.

 Teach possible beginnings and endings to conversations and topic SOCIAL INTEREST initiation. You may notice that your child has difficulty maintaining eye contact,  Visual support strategies can be initiating interactions, and inferring used for turn-taking and topic the interests of others. These maintenance, for example, a „my characteristics are likely to impact the turn‟ card can be passed back and development and maintenance of forth between communication meaningful and rewarding personal partners. relationships (Dodd, 2005).  Find special interest groups for Many individuals with an ASD desire your child to discuss topics that social involvement and interaction they are passionate about with with others, however they may other individuals also interested in display reduced capacity to interact the topic. effectively (Dodd, 2005) as they have difficulty using their communication  Formally invite other children to and social skills in the most your home to encourage social appropriate and effective manner interaction. (Nichols, Moravcik & Tetenbaum, 2009).  Use tailored tales to teach your child socially appropriate Children with an ASD may dominate behaviors. the conversation by not allowing others to interject or they may talk  Role playing various social Changes Social about things that only interest them. situations can be effective in These issues may further compound teaching your child appropriate the difficulty an individual with an social responses. ASD typically displays in forming meaningful relationships with others  Videotaping appropriate or (Betts & Patrick, 2008). inappropriate behaviors can assist

in teaching your child to respond

appropriately in social situations.

Specific examples and

strategies to help manage  Social goals should be based on their difficulties interpreting the amount of interaction and

14 exposure to social situations that interests. Problems will arise if your child feels comfortable with. teenagers with an ASD do not use subtlety when expressing their feeling. LIKING SOMEONE MORE THAN A Consequently, other teenagers may FRIEND react badly (Attwood, 2009).This may Individuals with an ASD may have be embarrassing and cause teasing trouble developing relationships amongst friendship groups (Attwood, (Attwood, 2009). One of their main 2009). difficulties is being able to identify how someone else may be feeling (Nichols, Moravcik & Tetenbaum, 2009). Children with an ASD find it Usually, individuals develop this skill challenging to build and naturally through having practice and maintain romantic relationships as they experience with family members and are likely to have limited social and friends. These acquired skills naturally communication skills. assist the development of a romantic relationship. However, children with an ASD may have limited social skills, Strategies to help your child poor communication skills and a with romantic relationships reduced ability to communicate

emotions. Therefore, their capacity to maintain a long term romantic  Explicitly teach your child how relationship is impacted (Attwood, others may be feeling. This 2009). includes explaining that most teenagers are embarrassed about Even though the adolescent with an having a crush or developing ASD may have difficulty understanding romantic relationships. others emotions and communicating their feelings, it is still possible for  In order to form solid social skills, it them to develop a romantic is crucial to assist your child in relationship. However, it is likely to be developing friendship skills from a more difficult for them than it is for young age. In addition, this will also others. aim to improve self-esteem. Thus, assisting them in developing romantic relationships appropriately When developing a romantic in the future. relationship, it is important that your  It may be useful to use the tailored

Social Changes Social child understands the importance of respect. tales provided.

Children with an ASD may have  It is beneficial to use pictures and particular difficulty with self- videos in order to provide an understanding (Attwood, 2009). example of appropriate relationship Adolescents with an ASD have skills. difficulty understanding that expressing deep romantic feelings for somebody  It may be a fun activity to role play

can sometimes be embarrassing several situations whereby your (Nichols, Moravcik & Tetenbaum, child can practice their relationship 2009). Typically, teenagers are subtle skills. Acting these skills out with about their feelings and romantic yourself or another family member

15 will serve to further consolidate including types of behaviours that may their experience and skills when be seen as stalking. next striking up a conversation. For example, pretend to be the boy/girl your child has a „crush‟ on while Strategies to help your child your child practices conversing with deal with stalking behaviours you appropriately.  Your child may need to be constantly reminded of STALKING appropriate and inappropriate behaviour after each social As mentioned above, children with situation they encounter. an ASD often have trouble perceiving verbal and nonverbal  You may want to provide explicit communications from others and visual instructions, including (Mesmere, 2007). If your child has appropriate and inappropriate trouble perceiving others, it is behaviours to your chid. possible that they may make poor judgement decisions such as  It may be useful to utilise the touching someone who may not want tailored tales provided in this to be touched, following someone resource to assist you in when they may not want to be describing these behaviours to followed, or calling someone your child. continuously when they may not want to be called (Legal Aid, QLD, 1997). This can be misinterpreted by  Pictures and videos may be others as stalking. beneficial in order to teach appropriate and inappropriate Amongst all the social skills required behaviours such as stalking. throughout puberty, appropriate boundaries are a crucial skill. Teaching your child these types of TOUCH boundaries will ensure fluid social It is important to explicitly teach the encounters in the future, avoid difference between good touch and embarrassing situations and will bad touch to your adolescent with an prevent them from getting into ASD. dangerous circumstances. Personal boundaries are frequently a problem Good touch is something that friends

for children with an ASD, particularly and family may do to show their Changes Social during puberty (Betts & Patrick, affection for one another. These 2008). touches may include; a handshake to say hello, a hug or a kiss. A bad touch Usually, children learn appropriate is something that feels and inappropriate behaviours wrong or through discussion and social uncomfortable, situations. However, children with an such as a ASD need a more precise and clear- stranger asking cut explanations (Betts & Patrick, for a kiss 2008). (Goulstein, It is important that your child 2010).

understands boundaries,

16 explore one‟s own body (Better Health Channel, 2011). Many males It is important that your child begin masturbating between the ages understands the difference of 13 and 15 years (Better Health between good touch and bad touch. Channel, 2011). The onset among female masturbation occurs more gradually. These statistics are for all Strategies to help your children including individuals with an child deal with good ASD (Morris, 2008). touch verses bad touch Masturbation is an uncomfortable  The difference between good topic when discussed with anyone, touch and bad touch should be including parents, friends, or within discussed. someone‟s own family.  It is important to explain to your child that a touch may be a good As your child grows and develops, touch for one person, but the they will begin to discover their same touch may be a bad touch bodies. As Sex hormones become for someone else. For example, active during puberty; many one person may like to be tickled adolescents begin to have (this is a good touch), whereas pleasurable and excited feelings someone else may not enjoy about their bodies. It is important that being tickled (this is a bad touch). you understand that your child with an ASD, like all children may be  Explicit and visual instructions attracted to and interested in other including appropriate and people‟s bodies during this pubertal inappropriate touching needs to transformation. It is important for you be given to children with an ASD. to understand that these feelings are For example shaking someone‟s normal. They may be difficult for your hand to say hello can be shown as child to describe and they may be a good touch. Whereas you may difficult for you to describe to your show videos to highlight the child. It is essential that you explain effects of a bad touch. For to your child that these feelings will example, someone being tickled happen at different times and in when they do not want to be. different ways for all boys and girls (Morris, 2008).  Modelling appropriate touching with peers and adults has also Your child should not feel

Social Changes Social been reported to be helpful in embarrassed about any sexual establishing personal boundaries. feelings they may have. The sexual For example giving your child a feelings of adolescents with an ASD kiss goodnight are no different to the feelings that other adolescents feel during this Masturbation Management and time. (Haywood & Saunders, 201O). Private verses Public Places Usually, parents with typically Masturbation refers to the sexual developing adolescents may not stimulation of one‟s genitals, touching need to discuss the topic of or rubbing private areas for sexual masturbation with their son or pleasure. It is normal and healthy to daughter, because their son or

17 daughter is able to understand the Strategies to help your appropriate social cues associated child with private vs. with these behaviours (Haywood & public places Saunders, 2010). Typically, adolescents understand that  It may be useful to utilise the masturbation is a private behaviour to tailored tales in this resource to be done in a private place. In assist you in describing private addition, they commonly understand and public places to your child. that these matters should not be  Pictures or photos can be used as discussed with everyone or in a a way to visually demonstrate the public area. In comparison, difference between private and individuals with an ASD may be public places unaware of the reactions of others. They may continue to discuss an  It may be beneficial to use videos uncomfortable topic despite the in order to inform your child about negative reactions of others (Morris, the importance of privacy. 2008). They might naturally start touching themselves in public and  Compare masturbating to another may not realize that it is wrong experience that he/she does by (Haywood and Saunders, 2010). This himself/herself in private, such as is certainly a pivotal topic to address taking a shower or using the with your child. restroom. It is essential to teach private and public places when Possible reasons for inappropriate your child is young. masturbation include:  It is important to teach your child - No structured routine and time private versus public places. made available for masturbation Private places should be - Not enough education about described as one‟s bedroom or privacy bathroom, where he/she is alone. - Not enough opportunity during Contrastingly, a public place the day for privacy should be explained as a place - There may be no locks on where other people reside. bedroom doors to provide privacy - Parents or siblings and other  Teaching your child appropriate residents may not respect the times and places to masturbate privacy of another person‟s will be beneficial in order to bedroom ensure that he/she does not begin

masturbating in public. Changes Social

 You may wish to teach your child It is important that your child that private parts of the body are understands public versus those we keep covered in public private places. places. Moreover, it may be helpful to explain that touching private parts of the body is only done in a private place with the door closed.

18  You may wish to play a game in order to consolidate your child‟s ability to differentiate between private and public places. For example, in your house, instruct your child to run to a private/public place and hide. You may then go and find him/her. Once you find he/she is found, ask him/her why that particular place was chosen as a private or public domain.

 You may find it useful to take photos that relate to your child‟s own private and public places. This will ensure that the aid is as familiar and effective as possible. Once you have taken the appropriate photo you can stick them beside the lists of private and public places that have already been provided. For example, it may be useful to take a photo of your child‟s bedroom, or a familiar shopping centre.

Social Changes Social

19 SOCIAL CHANGES- If people show me these signs then it is appropriate for me to continue INFORMATION FOR talking to them. ADOLECENTS If there are any other signs of LIKING SOMEONE DIFFERENTLY interest you feel appropriate to TO HOW YOU LIKE A FRIEND mention, you may add them to the A friend is someone I know very well. list above. My friends care about me and I care about them too. I trust my friends and they trust me. Sometimes I may want to have a special friendship with SIGNS OF DISINTEREST someone. I may start to feel different  Looking away about them. I may not be able to stop  Moving away thinking about them. I may think this  Looking unhappy person is attractive and they are not  Turning away related to me. I may like them to be my from me boyfriend / girlfriend. It is okay to feel  Crossing their this way but they may not always feel arms the same way about me. Sometimes it  Doesn‟t listen to is hard to know if someone feels this me way about me. I should know that just because someone is being friendly to If people are showing me these signs I me does not mean that they like me should stop talking to them and leave like a special friend and want to be my them alone because these people are boyfriend / girlfriend. not interested in talking to me.

If you have any other signs of disinterest that you feel are SIGNS THAT PEOPLE SHOW WHEN appropriate, you may add them to THEY ARE YOUR FRIEND: the list above.  Smiling  Talking to me  Asking me lots of questions  Spending time with me  Caring about me  Leaning closer to me  Touching my hair  Touching my face

Social

Changes

20 STALKING Shaking somebody‟s hand when I Stalking is when I follow someone meet someone new around, to their house, to school or any places they often go (Farlex, Bad touch is something that make me 2011). feel confused and uncomfortable For example; If someone is stalking me, they will When someone I don‟t like more than constantly; a friend touches me in my private areas - Follow me Someone hitting me - Comes over to my house over When someone touches me and and over again, even though I makes me feel unsafe or don‟t want them to uncomfortable - Call me or speak to me over When someone kisses me when I and over again, even though I don‟t want them to don‟t speak - Send me messages over and It makes a difference WHO is giving us over again, even though I don‟t the touch send messages back to them Hugs, kisses and touches from people

Social - Make me feel uncomfortable I know and love can be GOOD touches. If someone is doing this to me, it is not BUT the same touches from people I

right and I should tell a grown up. don‟t know and love can be BAD Changes touches. Sometimes I may like someone and feel like I want to spend a lot of time Although I enjoy touching myself and with them but they may not feel the sometimes may enjoy others touching

same way about me because they me, I need to make sure that the other may not want to spend time with me person that I am touching likes it as like I want to spend time with them. much as I do.

They may not return my calls or invite Please note, if you know your me over to their house. I should not go child does not feel comfortable 17 over to their house if I am not invited. being „pat on the back or hugged‟ customize the tailored tales to be If I do go to their house or follow them, appropriate for your child that would be wrong. specifically.

Social DEFINING TOUCH: Good touch and bad touch: Good touch is something that makes

Changes us feel happy and comfortable. For example; When I hold hands with my friends When I hug my parents When my teacher pats me on the back

for doing great work

21 THINGS THAT SHOULD BE DONE in private WITH NO OTHER PEOPLE AROUND (GIRLS):  Pee or Poo  Having a shower  Picking your nose  Scratching private parts  Changing your pad (a pad is what I put on my underwear when I have my period. This stops my clothes from getting dirty when I have my period.)  Masturbating  Changing clothes

If your child has a co-morbid physical disability and this list is not appropriate, you may alter it accordingly. Moreover, if you notice that your child is exhibiting any other inappropriate behaviours these should be added to this list.

THINGS THAT SHOULD BE DONE in private WITH NO OTHER PEOPLE AROUND (BOYS):

 Pee or Poo

 Having a shower

 Picking your nose  Scratching private parts  Adjusting private parts  Masturbating  Changing clothes

If your child has a comorbid physical disability and this list is not Social appropriate, you may alter it accordingly. Moreover, if you notice that your

child is exhibiting and other Changes inappropriate behaviors these should be added to this list.

22 MASTURBATION MANAGEMENT PLACES THAT ARE NOT OKAY TO As my body changes, I will start to feel MASTURBATE: new sensations that feel nice. I may  Places with people around touch parts of my body because it  Other rooms in the house that feels good. This is okay. are not my bedroom or the I should masturbate in private places bathroom. so that no one can see me. Just  In class because it is a private place does not  In shops mean I have to masturbate every time  At friends houses I am there.  In the car  At the park Some children with ASD may misinterpret this to mean they must always need to masturbate Please amend the list to suit you when in a private room and may and your child‟s needs. need clarification should this Masturbation in public is not occur. something all children with ASD will do, therefore it may not be PLACES THAT ARE OKAY TO appropriate to discuss this with MASTURBATE: your child.  In my room with the doors and blinds closed so no one can see me  On the toilet with the door closed  In the shower with the door closed  In the bath with the door closed  In the shopping centre toilet with the cubical door closed

If you feel that there are other places that would be more appropriate for your child to masturbate, you may add these to the list above. Although it may not be ideal for children to masturbate in a public toilet cubical, it should be noted that

Social some children with ASD find that sexual release calms them and without such release their behaviour may deteriorate.

Chang

es

23 Circle of Friends Activity Self: This is me. Family: These are the people who live at home with me. Extended family: These are the people who are my family but don‟t live in my home with me. For example; my grandmother, my grandfather, my aunty, my uncle and my cousins. Friends: A friend is different to an acquaintance. A friend is someone I know very well. My friends care about me and I care about them too. I trust my friends and they trust me. Acquaintances: There is a difference between being an acquaintance and a friend. An acquaintance is someone whose name I know, who I see every now and then, whom I might have something in common with and who I feel comfortable around. For example; I might see this person only on the train and not in my home. Teachers: These are the people who stand in front of the class at school and teach me things. Helpers: These are the people who help with things that I find difficult. Servers: These are the people who work in shops like cafes, restaurants or clothing stores. It is their job to serve customers like me Strangers: A stranger is someone I do not know, I do not know their name and I have never seen them before.

INSTRUCTIONS: * Discuss with your child who falls into each circle * Discuss what level of touching contact should occur with each individual * This activity will help highlight to your child which people are appropriate to touch and which are not.

Social

Changes

24 EMOTIONAL CHANGES- our own abilities), can emerge or be worsened by puberty in individuals INFORMATION FOR with an ASD (Diagnostic and statistical PARENTS manual of mental disorders, Forth The transitions and changes of edition – Text Revision (DSM-IV-TR) adolescence can be a difficult time for American Psychiatric Association all adolescents, and can be especially (APA), 2000; Branden, 1992; Harre & difficult for children with an ASD for a Moghaddam, 2003; Volkmar & number of reasons. A number of Wiesner, 2009). changes will take place; in addition to the physical and social changes Thus, in order to relieve the pressure previously discussed in the Physical and stresses of understanding the and Social sections of this resource, changes that are taking place it is adolescence is a time of emotional essential to explain the processes that change. are occurring during this time.

Adolescence can involve changes to a The material within this information person‟s perception of themself, their booklet is designed to assist you values, goals, and self-identity. It can and your child with… involve changes in mood resulting 1. Understanding and managing the from the physical changes to the body mood changes that may occur and its hormone levels (Plotnik & during this time Kouyoumdjian, 2008). Difficulty 2. Understanding the emotions of understanding the emotions of others, others difficulty controlling their own 3. Understanding and managing emotions, as well as depression anxiety (characterised by depressed mood 4. Managing problematic behaviours and marked diminished interest or 5. Understanding and developing self- pleasure in almost all activities), identity and self-esteem anxiety (characterised by fear or worry It is not always possible to completely related to particular stimuli or prepare adolescents with an ASD for situations), anger, aggression, and the changes associated with puberty, difficulty forming self-identity (the way as they may have difficulty we view our own personality traits, communicating and understanding the morals and goals) and self-esteem (a information presented.

Emotional sense of self-worth and confidence in communicating and understanding the information presented, it may be even Note: As there is a wide range more difficult to totally prepare them of intellectual and for the physical, social, and emotional communication levels between changes they are about to experience. individuals with an ASD, the

Changes However, there are a number of information and strategies suggested strategies that can be used, outlined in within this resource will need to be this section, to ensure that the customised to ensure that they can be individual is as prepared as possible easily understood by the individual. for the emotional changes they may For example, the vocabulary chosen,

soon be experiencing. and the length of information contained in tailored tales or visual aids

25 Emotional

Changes (e.g. charts, schedules) can be altered  Bipolar II Disorder: one or more depending on the level that the Major Depressive Episode individual‟s parent or guardian feels accompanied by at least one will be the most appropriate. Hypomanic Episode (elevated

or irritable mood over the MOOD CHANGES course of at least four days that There are a number of disorders that does not meet criteria for Manic involve a disruption of mood, or the Episode). 18 “pervasive and sustained emotion that colours the perception of the world”  Cyclothymic Disorder: at least (DSM–IV–TR; APA, 2000, p. 825). two years of periods of These mood disorders include: Hypomanic symptoms that do not meet criteria for a Manic  Major Depressive Disorder: one Episode and numerous periods or more Major Depressive of depressive symptoms that do Episodes (at least two weeks of not meet criteria for a Major depressed mood or loss of Depressive Episode. interest accompanied by at least four additional symptoms  Bipolar Disorder Not Otherwise of depression – see Symptoms Specified: bipolar symptoms of depression in neurotypical that do not meet criteria for any individuals for more of the specific Bipolar information). Disorders.

 Dysthymic Disorder: at least two  Mood Disorder Due To a years of depressed mood for General Medical Condition: more days than not, prominent and persistent accompanied by additional disturbance in mood that is depressive symptoms that do judged to be a physiological not meet criteria for a Major consequence of a general Depressive Episode. medical condition.

 Depressive Disorder Not  Substance-Induced Mood Otherwise Specified: depressive Disorder: prominent and symptoms that do not meet persistent disturbance in mood criteria for Major Depressive that is judged to be a Disorder, Dysthymic Disorder or physiological consequence of a other psychological disorders. drug of abuse, a medication, or exposure to toxins.

 Bipolar I Disorder: one or more Emotional Manic Episodes (distinct  Mood Disorder Not Otherwise periods in which there is an Specified: mood symptoms abnormally or persistently which do not meet criteria for a elevated, expansive, or irritable specific Mood Disorder. mood) or Mixed Episodes

(period of time in which the Individuals with an ASD may Changes criteria are met for both a Manic experience rapid mood changes (or Episode and a Major “mood swings”) during adolescence, Depressive Episode). which can be more severe or frequent

26 Emotional

than their neurotypical peers (Volkmar Specific examples of & Wiesner, 2009). problematic behaviours  In individuals with ASD and a and strategies to help manage these comorbid intellectual disability problematic behaviours will be

or difficulty communicating, discussed later on in this section. Changes changes in mood can commonly take the form of irritability, tantrums, or self- Many of the problems caused by these injury (Volkmar & Wiesner, mood changes stem from difficulties

2009). with awareness and regulation of emotions (Geller, 2005).  In individuals at the higher- functioning end of the autism 19 spectrum, mood changes are Emotional awareness and often demonstrated through regulation: difficulty adapting to change, Emotional awareness refers to our trouble concentrating, or ability to identify which emotion we are depression (Volkmar & feeling and the reason for it; emotional Wiesner, 2009). regulation refers to the ability to manage and control our emotions, as Although these mood changes can well as our ability to express them often resemble those associated with (Geller, 2005; Matson & Sturmey, bipolar disorder (periods of 2011). Emotional regulation can hyperactivity alternating with periods of include maintaining a particular decreased activity or depression), it emotion, increasing or decreasing the has not been proven that individuals extent to which we feel an emotion, or with an ASD are more likely to changing an unwanted emotion into a experience bipolar disorder (Tilton, different one. Regulating your 2004; Volkmar & Wiesner, 2009). emotions can take place while you are feeling that emotion, or before you Mood changes in adolescents with begin to feel it (Geller, 2005). ASD can cause (or worsen) problematic behaviours such as Individuals with an ASD often have temper tantrums and aggressive difficulty regulating their emotions behaviour. These behaviours may (Matson & Sturmey, 2011). The interrupt the individual‟s social reasons include: relationships, academic participation,  Having difficulty or requiring and can even be harmful to more time to process

Emotional themselves and others around them information; this includes (Volkmar & Wiesner, 2009). information about what is happening around them and how it makes them feel.

 Finding it difficult to associate

Changes emotions with their causes, or understand that an emotion is the result of something that happens to them.

27

Emotional

Changes

 Having difficulty telling different For example, if the individual emotions apart. For example, appears to be happy, discuss the

they may see all negative or emotion of happiness as the way unpleasant emotions as fear. you feel when something good happens or when you feel good  Having difficulty choosing inside; discuss that it often makes 23 appropriate facial expressions, you smile or laugh; discuss the or knowing when to use them, reason that you think that they to express their emotions to are happy (i.e. if they are smiling, others. laughing, or doing something that they enjoy). Due to the above mentioned difficulties, an individual with an ASD  Begin by practicing identifying may require help to understand and more common emotions, such as practice the skills involved in emotional happiness, anger, fear, surprise regulation. To be able to use strategies and tiredness. When the to regulate or improve their mood, an individual is able to reliably individual must first be able to identify these emotions, progress recognise the emotion that they are to more complicated emotions feeling, and determine (if possible) such as excitement, jealousy, what caused this emotion. Some trust, disappointment, love, adolescents with autism will embarrassment, and sympathy. understand this concept already, some will learn to identify emotions quickly,  There are a number of children‟s and some will require help to practice books available that encourage this skill before they are able to use children to identify their own strategies to regulate their emotions emotions and provide strategies independently (Geller, 2005). to help them manage their emotions appropriately; for example: Shy Spaghetti and Excited Eggs: A Kid's Menu of Feelings (Nemiroff & Annunziata, Strategies for helping your child 2011) and My Roller Coaster to determine between emotions Feelings Workbook (Herbert,  Use tailored tales to illustrate Herbert & Herbert, 2008). situations or events that can cause a particular emotion. Increasing an individual with an ASD‟s For example, to illustrate awareness of their emotions has been happiness, create a social story shown to help them change and

about being happy: “When regulate these emotions (Matson & Emotional something good happens to me, I Sturmey, 2011). feel happy. Some things that Not all individuals with an ASD will make me happy are (enter child‟s learn to how identify their own favourite interests/hobbies/ emotions independently; however, if activities/friends). When I feel the individual learns to reliably identify

happy, I smile and laugh.” the emotion that they are feeling, they Changes can then begin to learn strategies to  Use situations that arise as help them manage these emotions opportunities to discuss emotions. appropriately and identify when they need to ask for help or support, thus

28 reducing behaviours that will disturb or (e.g. too much noise, movement, harm themselves or others. language, etc) and the pressure of social interaction, which may cause or worsen their distress.

 Doing something they enjoy, such REGULATING MOOD as reading their favourite book, There are a number of strategies that playing on the computer or taking an individual can use to help regulate a walk outside may improve their emotions and control mood. These mood. Make a visual list with strategies (listed below) can be made pictures of the activities your child into a list of steps for them to follow enjoys – display this list when they appear to be acting out of somewhere so that the individual anger, frustration, sadness or fear. can refer to it when they need to. Remind the individual to follow the

steps (by reading the steps and presenting visual reminders such as  If these actions do not make them pictures of each step), and reinforce feel better, encourage the behaviour with praise and/or rewards individual to tell a when the steps are followed. parent/guardian/adult what is upsetting them and why – Explain that the adult might be able to help them fix the problem and then they will feel better. (Geller, Strategies for helping your 2005). child to regulate their mood  When the individual gets angry or  The Alert Program – see below: frightened, encourage them to stop what they are doing and take a deep breath. They should The Alert Program continue to breathe at a slow, This program was developed by steady rate. Explain that this will Sherry Shellenberger and Mary Sue help their body calm down. Williams to encourage emotional regulation in children with ASD (“Alert  Simple muscle relaxation Program™ Founders”, 2007, exercises, such as progressively September/October). It involves tensing and relaxing each muscle providing the individual with feedback group in the body (Press & about their current level of energy, Osterkamp, 2006) can also help alertness, and ability to concentrate. them calm down. Explain that This feedback can take the form of an “doing these exercises will calm Emotional analogy, such as referring to their your body down - this will then energy levels as a car engine: help your brain calm down and  Explain to the individual that you will feel better”. their body is like a car engine –  Encourage the individual to walk sometimes it runs slowly and away from the object or situation doesn‟t want to get going,

Changes that is distressing them, or find a sometimes it runs too quickly, quiet place to sit for a little while – and sometimes it runs just at this will allow them to escape the right speed. excessive sensory information

29  Say: “Your engine seems to be ideal level of alertness and energy in low gear today – I can tell (either with prompting or because it looks like hard work independently), and may learn to

for you to get going”, or “Your independently identify when their E engine seems to be in a really energy levels are either too low or too motional high gear today – you‟re talking high to allow them to function as really fast and it looks like it‟s effectively as they can (“Alert making it a bit hard for you to Program™ Founders”, 2007, concentrate”, or “Your engine September/October).

seems to be running just right at Changes the moment – you can Although the concepts may be too concentrate properly on what complex for some adolescents with an you‟re doing”). ASD, this program may still be useful in allowing adults or peers (including  The language and concepts parents, teachers, friends, or other involved in this analogy may be students at school) to communicate too complicated for the about the individual‟s energy levels individual, or may not interest (“Alert Program™ Founders”, 2007, 22 them. If the individual has a September/October). particular interest that you can use to represent their levels of More information about this program energy and alertness, or if they can be found at The Alert Program already refer to their energy website (www.alertprogram.com). levels in a particular way, you may be able to use this language instead of the engine analogy. Understanding the emotions and perspectives of others Once they become familiar with the As well as experiencing difficulty with concept of their energy levels the process of identifying and changing throughout an activity, interpreting their own emotions, people establish a visual list of strategies that with an ASD may have difficulty will help the individual either increase picturing things from someone else‟s or decrease their energy levels point of view, and understanding the (Williams & Shellenberger, 2006). thoughts and feelings of others; this These strategies will differ from ability is referred to as Theory of Mind individual to individual; however, here (Bernier & Gerdts, 2010; Goldstein, are some examples: Naglieri & Ozonoff, 2009).  To increase energy levels: jump

up and down ten times, do ten Emotional push-ups, or walk around the However, keep in mind that some room. individuals with ASD are  To decrease energy levels: read assumed to have significantly a favourite book, sit and listen reduced Theory of Mind, when in to music, or sit and take 10 fact their difficulty in social

deep, slow breaths. situations is not caused by an Changes inability to recognise or When encouraged to use the understand another person‟s strategies identified, many individuals emotions, but by other factors; will become better able to achieve an these may include sensory

30 Emotional Emotional

overload and withdrawal caused going to the football. Now I by their empathetic reaction to the understand why Sarah was other person‟s emotions, or an upset.” Changes inability to understand the other person‟s social signals (such as  Use everyday situations as an facial expression, body language, opportunity to encourage tone of voice, topic maintenance, individual to see situations from eye contact) and respond in a another person‟s perspective. socially acceptable way (Serhan, Throughout your day, tell the 2011). individual how you are feeling, and why you are feeling that way. 26 Difficulties with empathy and After some time, you can start to understanding different perspectives ask them to describe how they can lead to problems with social think you might be feeling about interaction and the formation of certain events. interpersonal relationships (Goldstein For example: “I dropped my piece et al., 2009). There are several of toast on the floor! How would it strategies that parents, guardians and make you feel if that happened to caregivers can use to encourage the you?” development of empathy.

DEPRESSION Adolescents who are on the autism spectrum have been shown to have a Strategies for increasing greater risk of depression (for empathy and understanding of symptoms of depression, see below) other people’s perspectives than their neurotypical peers.  The strategies outlined in Depression is more commonly Strategies for helping your diagnosed in individuals at the higher child to determine between functioning end of the autism emotions are also useful in spectrum; however, this may be due to helping individuals with an ASD the difficulty in detecting and understand the emotions of identifying the symptoms of depression others. in individuals at the lower-functioning

end of the spectrum, especially in  Develop tailored tales about individuals who do not communicate deliberately thinking about things verbally (Nichols, Moravcik & Pulver from someone else‟s perspective. Tetenbaum, 2009; Volkmar, Paul, Klin For example, create a social story & Cohen, 2005). about a class trip to the museum:

Emotional “My friend Sarah really wanted to Depression in individuals on the go to the museum. Sarah could autism spectrum is often due to the not go to the museum. That made individual‟s recognition that they are Sarah upset. I don‟t like “different” from their peers, or the museums. I like going to the increasing of academic pressure and football. I get upset when I cannot

Changes academic expectations (Volkmar et al., go to the football. So Sarah and I 2005; Volkmar & Wiesner, 2009). The both get upset. Sarah gets upset difficulties in understanding social about not going to the museum rules and expectations that these the same as I get upset about not individuals often experience (see the

31 Social section of this resource) mean  Recurrent thoughts of death or that, although they generally want to self-harm make friends and form social Emotional relationships, they may not know The symptoms of depression in which behaviours are socially individuals who are on the autism acceptable and which social spectrum are essentially the same as behaviours will help them achieve those of their neurotypical peers. these relationships. This may lead to However, while some individuals will

social isolation, which can also cause display similar behaviours to Changes or worsen depression (Volkmar et al., neurotypical individuals with 2005). depression, a depressed individual with an ASD may frequently behave However, there are signs for parents, quite differently than the typical guardians, caregivers and teachers to perception of people with depression watch for, and actions that can be (Goldstein et al., 2009; Nichols et al., taken to treat and manage depression 2009). if it does occur. 24

Possible behaviours that are Symptoms of depression in reflective of symptoms of neurotypical individuals depression in individuals on the To be diagnosed with a major autism spectrum depressive episode, an individual must  Increase in frequency or display at least five of the following severity of repetitive or symptoms during the same two week compulsive behaviours period; these symptoms must  Onset or increase in temper represent a change from previous tantrums or aggressive functioning, and at least one of the behaviour symptoms must be either (1)  Onset or increase in irritability depressed mood or (2) loss of interest or agitation or pleasure (DSM–IV–TR; APA, 2000):  Onset or increase in self-  Depressed mood, nearly every injurious behaviour or self-harm day during most of the day  Decrease in everyday  Marked diminished interest or functioning across different pleasure in almost all activities situations or environments  Significant weight loss or weight  Preoccupation or obsession gain, or a change in appetite with death/dying  Changes in sleep (either  Talking about suicide or sleeping too much or too little) harming themselves (Goldstein  Visible changes in the speed of et al., 2009; Nichols et al., 2009; Emotional bodily movements and speech Volkmar et al., 2005) (either reduced speed of movements or excessively fast It is recommended that you take or agitated movements) any comments about suicide or  Fatigue or loss of energy

self-harm very seriously, and act  Feelings of worthlessness or immediately. Contact the Changes inappropriate guilt individual‟s GP or the Intake  Indecisiveness or difficulty Service for your local Child and concentrating Adolescent Mental Health Service

32 (refer to the Useful contacts professionals at this service in section of this resource for order to facilitate a referral if contact information) immediately appropriate. Emotional to discuss options for managing the individual‟s depression.  If either you or the individual‟s teacher have suggestions If the individual has not regarding the cause of the

commented about self-harm or individual‟s symptoms, or factors

Changes suicide, but does exhibit one or that may be worsening their more of the above signs of apparent depression, discuss ways depression, it is still important to to manage these factors with contact the child‟s GP or a mental school staff and Child and health professional as soon as Adolescent Mental Health Service

possible. professionals. For example: 1. Commencing social skills If you have concerns regarding the training/exercises can help the 25 individual‟s mood, there are several individual form social relationships. strategies that you can use, often in 2. Becoming socially involved in a conjunction with the individual‟s hobby/area of interest can also teachers. help with the formation of social relationships. 3. Having a mentor or tutor may assist your child in coping with the demands of their schoolwork. Strategies to help lowered mood in adolescents with an If the individual is being bullied, ASD refer to Self-Identity and Self-  Contact the individual‟s teacher(s) Esteem later in this section of the and ask them: resource for ways to manage this 1. Whether they have observed (Goldstein et al., 2009). any of them symptoms or behaviours that you have observed at home. 2. Whether they know of any ANXIETY reasons for the individual‟s There are a number of disorders that apparent depression/change in are categorised as Anxiety Disorders; mood (for example, whether these include Generalized anxiety they have many friends; how disorder, Panic disorder (with or effectively they interact socially without agoraphobia), Agoraphobia with their peers; whether they without history of panic disorder,

Emotional are being bullied; whether their Specific phobia, Social phobia, schoolwork is too demanding or Obsessive-compulsive disorder, too much pressure). Posttraumatic stress disorder, and Acute stress disorder (DSM–IV–TR;  Contact your local Child and APA, 2000). The incidence of anxiety

Adolescent Mental Health Services.

Changes disorders in pre-school children is The information obtained from the relatively the same in children on the individual‟s teacher may be helpful autism spectrum as it is in their in describing the individual‟s neurotypical peers. However, when changes in mood to mental health children reach school age, and

33 Emotional especially adolescence, individuals on the autism spectrum have been shown Strategies for parents to to have a greater risk of anxiety decrease anxiety-provoking

disorders than their neurotypical peers

situations for individuals with Changes (Goldstein et al., 2009; Nichols et al., an ASD 2009).  Many individuals on the autism spectrum rely on routine and The most common anxiety disorders structure, and may become that occur in individuals with an ASD anxious or distressed if their are: routine is interrupted (Volkmar et  Specific Phobias: defined as a al., 2005). Maintain a daily routine marked, persistent, and at home and school as much as 26 excessive or unreasonable fear possible. of a specific object or situation (APA, 2000, p. 444).  Displaying a visual timetable of  Examples of specific phobias daily activities (including: get up, can include fear of have a shower, get dressed, have thunderstorms, dark places, or breakfast, brush teeth, etc) may large crowds (Goldstein et al., help many individuals with an 2009). ASD keep track of what they need to be doing, and will Adolescents with an ASD may also reassure them as to what will be suffer from: happening next (Barratt, Cassell  Panic Disorder: recurrent, & Hayes, 1998). unexpected “panic attacks” (a discrete period of intense fear  When you need to change the or discomfort in the absence of individual‟s routine, discussing real danger), followed by at the new activity with them in least one month of persistent advance is generally helpful. concern about having another Small changes to the routine may panic attack, worry about the be discussed with the individual implications of the panic attack, the day or several days before. or significant behavioural On the day, introduce the new change related to the attacks activity or setting into the visual (APA, 2000). schedule for the day, to allow the  Social Phobia: marked and individual to see how the activity persistent fear of social or fits in to the day‟s activities, and performance situations in which when the schedule will return to embarrassment may occur normal (Barratt et al., 1998).

(APA, 2000). Emotional  Generalised Anxiety Disorder:  When discussing significant at least six months of persistent changes, such as moving house and excessive anxiety and or changing schools, many worry (APA, 2000; Goldstein et individuals on the autism al., 2009; Nichols et al., 2009). spectrum will benefit from being

introduced to the idea of this Changes If you have observed symptoms of change as early as possible (ie anxiety in an individual, there are weeks or months earlier). several strategies that you can use to However, for some individuals, help minimise their anxiety. beginning the preparations for the

34 change too far in advance will another teacher with a message if cause anxiety instead of relieving their anxiety levels appear to be it (Wilkes, 2005). When deciding rising. The individual and their when to begin preparing the teacher may even be able to individual for the upcoming develop a signal to allow the change, consider whether individual to signal that they are knowledge of upcoming changes feeling anxious or overloaded has helped the individual accept with sensory information without changes to their routine in the attracting attention to themselves past. (Attwood, 1998; Volkmar et al., 2005).  As individuals on the autism spectrum may have difficulty  Cognitive Behaviour Therapy understanding the socially (CBT) can also help to prevent or acceptable ways of initiating, reduce anxiety in individuals on maintaining and ending a the autism spectrum (Attwood, conversation, social interaction 1998; Volkmar & Wiesner, 2009). can cause significant anxiety This method of therapy is (Volkmar et al., 2005). Providing delivered by trained a particular place that the psychologists, and aims to adolescent can go to that is free change or restructure the way an from social or conversational individual thinks and the interruption will help decrease or behaviours that occur as a prevent this anxiety (Attwood, reaction to the way they think. It 1998; Volkmar et al., 2005). can help increase reasoning skills and the ability to interpret  Engage the individual in an situations appropriately, which activity that requires physical decreases worrying, and exertion (e.g. a trampoline or behaviours caused by anxiety swing) – this can decrease (including avoidance of certain anxiety and agitation (Attwood, situations, or an increase in 1998; Volkmar et al., 2005). repetitive behaviours) (Butler, Fennell & Hackmann, 2010). You  At school – discuss with teachers can discuss whether or not CBT whether the individual can access would be appropriate for the somewhere quiet during times of individual with their GP or anxiety or stress at break-time. paediatrician. Being able to spend some time without excessive sensory input

Emotional or social interaction may prevent or help decrease anxiety in the schoolyard (Attwood, 1998; Volkmar et al., 2005).

 At school – discuss with teachers

Changes if there is a way that the individual can have a short break from the classroom if required. For example: the teacher may be able to send them to the office or to

35 first two weeks, Sarah feels fine. In GIRLS- PMS AND EMOTIONAL the third week, she starts getting CHANGES headaches, feels tired, and has Adolescent girls on the autism trouble concentrating, and gets spectrum will still experience the same annoyed more often. She knows range of symptoms of PMS, including that this means she will probably associated emotional symptoms (such get her period in a few days. She as irritability, difficulty concentrating, knows that these feelings will go depression, anxiety, withdrawal from away, and that she will soon feel social situations, difficulty sleeping, or better.” excessive time spent sleeping) as their If you have started/plan to use the female neurotypical peers. However, if Strategies for helping your child your daughter has difficulty to regulate their mood with your communicating or with regulating her daughter, describe the girl using emotions, the emotional symptoms the strategies when she felt that she experiences may result in annoyed to make herself feel monthly incidences or increases in better. behavioural problems (Nichols et al., 2009).  If your daughter‟s PMS symptoms seem to be severe or are preventing her from completing normal activities, contact her GP to discuss medical and other options Strategies for managing the for managing these symptoms emotional symptoms of PMS (Nichols et al., 2009).  Explain to your daughter the range

of symptoms that may be

associated with PMS. ANGER, AGGRESSION AND Understanding why these PROBLEMATIC BEHAVIOURS symptoms are occurring and how The problems in social interaction and long they are likely to last for will communication experienced by help increase your daughter‟s individuals on the autism spectrum sense of stability and control over frequently lead to expressions of these changes to her body (Nichols feelings through behaviour. The et al., 2009). expression of frustration, anger, or fear

in individuals on the autism spectrum  Use specific language and can often take the form of behaviours terminology and avoid that are disruptive, aggressive and colloquialisms when explaining violent (Fouse & Wheeler, 1997). these symptoms. For example, say

Emotional “you might have a sore stomach” In many cases, the individual is not instead of “you might feel a bit wishing to disrupt or harm themselves funny in the tummy”. or others, but simply to express their needs, wants, and feelings. For  Use tailored tales to illustrate the example, a temper tantrum may be the

physical and emotional symptoms individual‟s way of expressing their Changes that your daughter appears to frustration at not being able to experience due to PMS. communicate and make themselves For example, create a social story understood (Fouse & Wheeler, 1997). about getting your period: “For the

36 Behavioural reactions to particular some individuals become emotions can vary widely between defensive or aggressive with individuals on the autism spectrum. even a slight touch, or may For example: have problems with touch on a  An individual on the high- particular area of the body (e.g. functioning end of the autism palms of the hands), or with spectrum may display anxiety particular textures. Some by fidgeting, nervousness, individuals may prefer muscle tension, or excessive increased levels of sensory giggling (Fouse & Wheeler, information, and may require 1997). textured clothing or objects to  An individual with a moderate provide them with sensory intellectual disability on the stimulation. Tantrums or autism spectrum may display behavioural problems may be their anxiety through increased the individual‟s way of movement and activity, expressing their dislike of a excessive giggling or crying, or particular type of sensory making strange or loud noises information (Tilton, 2004). (Fouse & Wheeler, 1997).  An individual with a severe  Social pressure and intellectual disability with an expectations: difficulty knowing ASD may respond to their which behaviours are socially anxiety through temper acceptable, as well as those tantrums, screaming, violent that are socially expected, can behaviour, or by withdrawing cause anxiety, as well as from the situation and “shutting agitation and frustration, in down” (Fouse & Wheeler, individuals on the autism 1997). spectrum. These emotions can often translate into aggressive or violent behaviours (Fouse & Factors that may cause/worsen Wheeler, 1997). aggressive or problematic  Communication difficulties: behaviours similarly, difficulty As a parent, guardian, or carer of understanding what is being individual on the autism spectrum, the said to them or difficulty task of determining the reason for the expressing themselves can also problematic behaviour or the message cause distress and frustration in that the individual wishes to convey these individuals (Fouse & can be very difficult. However, there Wheeler, 1997). This often Emot are a number of factors to consider results in aggressive or violent when looking for the cause of the behaviour, but alternatively may behaviour: cause some individuals to ional ional  Sensory issues: individuals on withdraw from social situations the autism spectrum may react (Tilton, 2004). differently to the sensations of

Changes touch, sight, hearing, smell and  Deviation from routine and taste, and may have structure: just as changes to behavioural issues surrounding routine can cause anxiety, they any of these senses (Fouse & may also cause frustration, Wheeler, 1997). For example, temper tantrums, or other

37 aggressive behaviours. asking an adult for help) with Similarly, interrupting an pictures for the individual to follow; individual‟s repetitive behaviour explain that they should try to patterns can often cause follow the list instead of reverting to frustration and aggression temper tantrums or other (Fouse & Wheeler, 1997). problematic behavioural habits. When the problematic behaviour occurs, encourage them to follow the list, and reward them with Strategies for managing praise and/or an activity they enjoy problematic behaviours (Dodd, 2005).  If the individual is able to communicate verbally, encourage  Look for patterns: does the them to tell you what is wrong so problematic behaviour always that you can understand why they occur in the same situation, or are behaving in this way. Through every time they are exposed to a their aggression, the individual may particular sight, sound, smell, taste, be trying to tell you they need or touch or texture? If you can identify want something (Dodd, 2005). a sensory issue that they have with Although it is difficult do not get a particular object or situation, you angry or yell. The individual should can then avoid or modify the objet not feel like they are being or situation, and hopefully eliminate punished for trying to communicate the problematic behaviour (Fouse with you, but that there are nicer & Wheeler, 1997). and more efficient ways to communicate their wants and needs. Medications to manage problematic  If the individual is not able or willing behaviours to stop and communicate with you At this point in time, no medications about what is distressing them, the have been proven to treat or decrease best thing to do during the tantrum the severity of the primary difficulties itself is wait, and try to minimise the associated with an ASD (Volkmar & risk of harm to themselves or Weisner, 2009). However, there are others (Fouse & Wheeler, 1997). currently a range of medications available that may be able to reduce or  Tailored tales (for example, the relieve some of the symptoms story about dealing with anger associated with an ASD (these described in Strategies for symptoms including depression, helping the individual to anxiety, hyperactivity, agitation,

determine between emotions) aggression, obsessions and Emotional can encourage the individual to compulsions) (Volkmar & Wiesner, replace their problematic 2009). behaviours with a structured list of acceptable behaviours (Fouse & It may be that your GP, Paediatrician, Wheeler, 1997). psychiatrist or psychologist can speak

with you about the possibility of Changes  Visual schedules can also be medication for the individual. useful in managing problematic Medication may be raised as being behaviours. Create a list of tasks helpful in the following situations: (for example, taking deep breaths,

38  If the individual experiences  They may experience difficulty symptoms of ASD (these with being different from symptoms including depression, their peers, and determining anxiety, hyperactivity, agitation, how they fit in with and relate to aggression, obsessions or their peer group (Nichols et al., compulsions) that are severe. 2009).

 If these symptoms interfere with  Depending on the level of care the individual‟s participation in and support the individual activities of daily living such as needs from family and carers, education, work, or community they may find it difficult to activities. understand, or may not be able to understand, the reasons that Your GP, paediatrician, or psychiatrist they are not likely to achieve will be able to discuss with you the total independence. different medications available, their side effects, and whether the potential The development of their self-identity benefits would outweigh these side and self-esteem may be negatively effects for the individual (Volkmar & influenced by bullying or by being Wiesner, 2009). treated differently by their peers, teachers, or others in the community (Serhan, 2011; Shore, Rastelli & SELF-IDENTITY AND SELF-ESTEEM Grandin, 2006). In addition to the physical, social, and mood changes that are associated It is important to discuss self-identity with adolescence, this transition from and self-esteem with the individual, childhood to adulthood involves and encourage them to share any establishing your self-identity; that is, questions or problems that they have. figuring out who you are and what your They may prefer to share this values are. It also involves building information and ask for advice from self-esteem; that is, viewing yourself professionals or people that they do as a valuable part of society, with not know personally or socially individual values, skills and strengths. (instead of coming to their parents, These are issues that face all carers or teachers). Therefore, it may adolescents, but people on the autism be helpful to let the individual know spectrum may have greater difficulty that there are other sources of with self-identity and self-esteem than information and advice, and provide their neurotypical peers, for several them with a list of contacts. For reasons (Mesmere, 2007): example:  counsellors Emotional  They may have problems with  The Autism Advisory and emotional regulation, making it Support Service (AASS) 24 more difficult for them to hour Australia-wide Autism determine how they feel about hotline (more information is themselves, how they feel about available from certain issues, and what their http://www.aass.org.au/)

Changes values are surrounding these issues (Geller, 2005; Matson & Sturmey, 2011).

39  Online autism chat groups and in. It will also encourage the discussion boards, such as the development of social skills, which Autism Support Network is likely to help their self-esteem in (http://www.autismsupportnetwo the long run (Gabriels & Hill, 2008). rk.com/) or Healthful Chat Autism Chat Room  Encourage the individual to (http://www.healthfulchat.org/aut consider their likes, dislikes, ism-chat-room.html) personality, and how they would describe themselves to others. One way to do this is to help them create an „All About Me‟ book – Strategies to encourage self- include pictures of things they like, identity and self-esteem pictures of friends, hobbies and  Discuss with the individual the fact achievements. You can also that everybody is different, and that discuss words that they would use is what makes us interesting as to describe themselves, and people. People can look different, include these in the book (Nichols speak differently, think differently or et al., 2009). act differently to one another, and  There are also books available that is fine. Discuss the idea that, (including Can I Tell You about although they may feel different to Asperger Syndrome?: A Guide for the other children at school, or Friends and Family by Jude Welton people might tell them that they‟re and Jane Telford, and a number of different, they are not the only ones other books available at Book In who are different (Serhan, 2011). Hand: Autism and Asperger‟s  Convert the above discussion into Supplies - a social story that you can read http://www.bookinhand.com.au/ind together. ex.html), that discuss common characteristics and behaviours of  The individual may benefit from individuals on the autism spectrum, becoming involved with others with and may help to prompt the an ASD, especially other individual to consider their own adolescents. This will allow them to personality traits and behaviours. gain a greater understanding of autism itself and the ways that it  It is important to understand that it can affect different people, and to may take individuals on the autism share their own experiences with spectrum longer than their an understanding audience. It will neurotypical peers to develop a also provide them with true sense of who they are and opportunities to interact with others what they are worth (Serhan, Emotional in a social environment (Volkmar et 2011). al., 2005).  Encourage the individual to become socially involved in an

activity that they enjoy (for Changes example, joining a sporting club or a band) – this will help to give them a greater sense of who they are, what they enjoy and where they fit

40 Bullying Strategies to manage bullying Bullying involves being repeatedly  Discuss with the individual what exposed to negative actions on the bullying is. Give specific examples part of one or more other individuals; of behaviours that are considered this may include physical aggression bullying, including: physical (e.g. hitting, pinching, pulling hair, aggression (e.g. hitting, pinching, kicking, anything that involves hurting pulling hair, kicking, anything that part of their body); verbal abuse (e.g. involves hurting part of their body); calling names, saying unkind or hurtful verbal abuse (e.g. calling names, things); exclusion (e.g. avoiding talking saying unkind or hurtful things); to them, excluding them from group exclusion (e.g. avoiding talking to conversations or activities); indirect them, excluding them from group bullying (e.g. spreading rumours about conversations or activities); indirect someone to other people, or sharing bullying (e.g. spreading rumours someone‟s secrets with others); and about someone to other people, or cyberbullying (e.g. sending hurtful or sharing someone‟s secrets with offensive messages via others); and cyberbullying (e.g. text/email/social media) (Dodd, 2005). sending hurtful or offensive Bullying can significantly increase the messages via text/email/social risk of low self-esteem and depression media) (Dodd, 2005). (Sanders & Phye, 2004). If the bullying is persistent, it may affect social and  Ensure that the individual emotional development, especially if it understands that all of the above occurs during adolescence, which is behaviours are not acceptable, and an important time for developing these that they should inform someone, social and emotional skills. It can also ideally you or their teachers, if impact on an individual‟s participation these behaviours occur, whether it and performance in their classwork is at school or outside of school and school activities (Dodd, 2005). (Dodd, 2005).

Any child or adolescent can find  Use tailored tales or a visual list of themself the victim of bullying, whether steps to encourage the individual they have an ASD or not. However, not to retaliate against the bully, but because individuals on the autism to walk away from them (Dodd, spectrum may have fewer friends, 2005; Volkmar et al., 2005). reduced social skills, difficulty For example: “Sometimes people understanding unspoken social cues say mean things to other people, or (such as facial expression, body laugh at them. People do it language) that provide information because they find it fun, or because about how to respond appropriately in Emotional they‟re bored. Nobody likes it when social situations, or have repetitive people say mean things to them. If behaviours that appear different to someone says something mean to their peers, they are a higher risk of me, or laughs at me, I can say “I being bullied than their neurotypical don‟t like that” or “I‟m leaving”, or I peers (Shore et al., 2006; Volkmar et can just walk away from the

Changes al., 2005). person.”

 Using these tailored tales as the basis for a role-play can be very valuable. Some individuals with an

41 ASD will need to have their responses to the bully scripted, and some individuals will be able to move away from the scripted responses and adapt their responses to suit the specific situation being role-played (Dodd, 2005; Volkmar et al., 2005).  If the bullying is occurring at school, discuss the individual‟s reports of bullying with your child‟s teacher(s). The teachers can then monitor the situation during class time to ensure that the bullying is prevented as much as possible, and also to ensure that the individual does not retaliate or respond aggressively to the bully (Dodd, 2005).  It may also be helpful to discuss with school staff whether a “buddy system” or another form of peer support can be arranged, to ensure that the individual has someone looking out for them at break times/lunchtime, when a teacher may not be present (Dodd, 2005).

Emotional

Changes

42 EMOTIONAL CHANGES- emotions (such as anger, fear, RESOURCES FOR surprise, tiredness, excitement, ADOLECENTS jealousy, trust, disappointment, love, embarrassment, and sympathy). UNDERSTANDING OWN EMOTIONS

HAPPINESS

UNDERSTANDING THE EMOTIONS When something AND PERSPECTIVES OF OTHERS good happens to My friend Sarah really wanted to go to me, I feel happy. the museum. Some things that Sarah could not go to the museum. make me happy That made Sarah upset. are…. I don‟t like museums. When I feel happy I like going to the football. I smile and laugh. I get upset when I cannot go to the football. So Sarah and I both get upset. Sarah gets upset about not going to (enter child‟s favourite the museum the same as I get upset interests/hobbies/activities/friends). about not going to the football. Now I understand why Sarah was upset.

SADNESS Adapt this story to refer to an actual event or situation which the individual had difficulty viewing When something from another person‟s bad happens to perspective. me, I feel sad. Some things that

make me sad are… Sometimes

I cry when I feel sad . .

(enter things that have made the

Emotional Changes Emotional individual upset or sad in the past).

Adapt these stories to target the particular emotion or emotions that the individual has difficulty identifying, or create a series of tailored tales to increase the understanding of a range of

43  Squeeze the muscles in your MANAGING BEHAVIOUR hands for 5 seconds, then relax GETTING ANGRY them Sometimes things happen that make  Squeeze the muscles in your me feel angry. arms for 5 seconds, then relax them Everyone gets angry at one time or  Raise your eyebrows for 5 another. seconds, then relax them  Squeeze your eyes shut for 5 When I feel angry, I seconds, then open them should stop what I am  Open your mouth as wide as it doing. will go for 5 seconds, then relax it I should take a big breath in.  Raise your shoulders up towards your ears for 5 I should count to ten seconds, then relax them very slowly.  Push your chest out and your

shoulders back for 5 seconds, This will help me calm down and feel then relax better (“Tailored tales”, 2005).  Squeeze the muscles in your thighs for 5 seconds, then relax them  Squeeze the muscles in your Visual schedule: WHEN YOU GET lower legs for 5 seconds, then ANGRY OR FRIGHTENED relax them  Stop what you are doing  Squeeze the muscles in your feet for 5 seconds, then relax  Take big, slow breaths in them and out Doing these exercises will calm your body down - this will then help your  Walk away or find brain calm down and help you feel a quiet place to sit better (Press & Osterkamp, 2006). down

 Do something you enjoy (insert a list of the child‟s favourite activities, MANAGING PMS with pictures) For the first two This will help your body calm down weeks, I feel fine. (Geller, 2005). In the third week, I start getting Changes Emotional headaches, and feel Visual schedule: WHEN YOU FEEL tired. WORRIED OR NERVOUS I have trouble concentrating, and get  Sit down somewhere annoyed more often. comfortable and quiet (like on I know that this means I will probably your bed in your bedroom, or on get my period in a few days. a chair in an empty classroom – I know that these feelings will go away, make sure you ask your teacher and that I will soon feel better. first)

44 Adapt this story to include the this is what makes me an interesting symptoms of PMS that the person (Serhan, 2011). individual generally experiences.

MANAGING BULLYING Brad told Daniel that he was fat and laughed. Daniel felt sad. Sometimes people say mean things to other people, or laugh at them. People do it because they find it fun, or because they‟re bored. Brad laughed because it was funny to him. Daniel was sad because it was not funny to him.

Nobody likes it when people say mean things to them. If someone says something mean to me, or laughs at me, I can say “I don‟t like that” or “I‟m leaving”, or I can just walk away from the person.

INCREASING SELF-IDENTITY AND SELF-ESTEEM Everybody is different. That is what makes us interesting as people. People can look different, speak differently, think differently or act

Emotional Changes Emotional differently to one another, and that is fine. If we all looked, spoke, thought and acted the same, the world would be very boring! I must remember that even if I feel different to the other children at school,

45 USEFUL CONTACTS

Child and Youth Mental Health Service/Child and Adolescent Mental Health Services (Victoria): http://www.health.vic.gov.au/mentalhe alth/services/child/index.htm For general enquiries or complaints: phone 1300 767 299 Postal address: Mental Health, Drugs & Regions Department of Health GPO Box 4057 MELBOURNE VIC 3001

Autism Advisory and Support Service (AASS) 24 hour Australia- wide Autism hotline: 1300 222 777. For more information, visit http://www.aass.org.au/

Autism Victoria: http://www.autismvictoria.org.au/home/

Autism Support Network: http://www.autismsupportnetwork.com/

Healthful Chat Autism Chat Room: http://www.healthfulchat.org/autism- chat-room.html

Beyond Blue: http://www.beyondblue.org.au/index.as px

Lifeline: http://www.lifeline.org.au/

Book In Hand: Autism and Asperger’s Supplies: http://www.bookinhand.com.au/index.h Contacts Useful tml

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