Adolescents on the Autism Spectrum By Chantal Sicile-Kira © Autism Making a Difference Please do not distribute without permission.

My Background BA Social Ecology - University of California, Irvine Fairview State Hospital Orange County Regional Center Jeremy and Rebecca born in France - involved again in the world of autism Move to England (started home program) Move to San Diego ( advocate, write books) Taskforce on Transitional Services & Supports Calif Legislative Blue Ribbon Commission on Autism Co-Chair, South Counties Autism Regional Taskforce of the Calif. Senate Select Committee on Autism & Related Disorders Founded AutismCollege.com

My Inspiration - Jeremy I was told to put him in an institution. I don’t think they meant college. He graduated high school at age 22. Part time student, autism advocate, volunteer, writer, presenter. Beginning to earn money. Needs supports, but can be productive.

Overview of Presentation The 13 Things Every Parent or Educator Needs to Know General Challenges faced by ASD Teaching about Puberty, Self-Care, Masturbation

“Teenage years were the worst years of my life “Teenage years were the worst years of my life. When my hormones turned on I began to have unrelenting panic attacks. As if this was not bad enough, then the teasing started. I was called ‘retard’ and ‘tape recorder’ because I always kept talking about the same thing. Walking back from class another girl called me a retard, so I hurled a book at her. This got me kicked out of school.” - Temple Grandin

The Top 13 Things Professionals and Parents Need to Know about raising or teaching an adolescent on the autism spectrum

12. Some teenagers care about smelling good. Or not. 13. Teenage behavior cannot be blamed on mercury or the parents’ genetics. 12. Some teenagers care about smelling good. Or not. 11. Noncompliance is normal teenage behavior. 10. Teenagers like to make their own choices. Usually they are not the same as yours. 9. Teenagers learn self esteem at home and school. Or not. Teenagers do not develop good organizational skills or self-care skills through osmosis.

1. You will survive the teen years. Barely. 7. Moodiness and raging hormones is a normal teenage thing. 6. Self-regulation is a needed life skill not practiced by teenagers. 5. Orderliness is a foreign concept to most teens. 4. Whining is an often-used communication skill. 3. Masturbation is normal, teenage activity. 2. Learning about sex from known and trusted adults is necessary. 1. You will survive the teen years. Barely.

General Challenges Faced by ASD Teenagers Just reminders Keep in mind:

Autism Spectrum Disorders Three symptom areas that characterize ASDs: Difficulties with social relationships Difficulties in communication Obsessive or inappropriate attachment to objects or rituals

It’s a Spectrum “When you’ve met one autistic person, Wide spectrum of abilities Symptoms can vary from very severe (Kanner type) to very mild (Asperger type) A person may show real abilities in certain areas, but be functionally disabled in other areas

Interviews with ASD Adults (Book: Autism Life Skills) Most expressed three areas as the most difficult as students: Making sense of the world (ie sensory processing) Communication Safety

“Making sense of the world” has a lot to do with difficulties in transition, whether it is the many transitions we all face every day, to major life transitions such as entering the adolescent years. How this can be seen as disruptive behaviors at school. We’ll be talking about sensory processing and how to address that as well.

Build Upon Their Uniqueness (Great Expectations) Different learning styles (not everyone with autism is a visual learner) Different sensory processing channel Different functional abilities Different strengths and talents Different motivators

Resources Freaks, Geeks and Asperger Syndrome by Luke Jackson Autism Life Skills by Chantal Sicile-Kira Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders by Chantal Sicile-Kira

Everything You Always Wanted to Know about Teenagers on the Spectrum …but were afraid to ask

Overview of Presentation Growth and Development Hygiene and Health Grooming, Dressing and Looking Good How to handle Masturbation

Growth and Development Risk of Seizures for 1 in 4 teens on the spectrum Meltdowns or aggression may increase in some, and decrease in others Physically mature at same rate as peers, however emotionally less mature Risk of depression

Why Puberty is Hard on ASD Teens Most do not like change, yet body is changing and they cannot control it Most do not pick up information by osmosis from siblings or peers or through sitting in Health classes in school They do not understand why they are feeling different They hear about sex from others but may not understand

Emotional Health - Consider Important to teach the teen re puberty and body changes of both sexes Look at sensory / transition challenges Connection with a trusted adult other than a parent (therapist, uncle, aunt) important Psychologist / Psychiatrist / medication may be helpful if knowledgeable about ASD teens, and as part of whole educational/ treatment plan (ie look at environmental issues, relationships, etc before medication)

Fix Problem Areas in Self-Care Routines (Preparation for life as an adult) Task Analysis – how a task is accomplished, detailed description of each step (examples brushing teeth, taking a shower) Take data Which steps are presenting problems? Why?

Fix Problem Areas in Self-Care Routines Possible problem areas: Forgets steps Has motor challenges (motor initiation) Sensory challenges

Fix Problem Areas in Self-Care Routines Desensitization of sensitive areas Hand over hand for motor memory Visual schedules Verbal schedules / songs/ rhythms Use of different products (Examples) Give examples

Now, a fun exercise….. BSAINXLEATNTEARS

Presume Competence! Non-verbal does not mean they don’t understand. Challenge is probably in the output, not in the input. Always assume they can understand, speak to them as you would to other children. Take the time to explain even if they do not appear to be listening or understanding. What have you got to lose? A few minutes of time every day?

Puberty Boys age of onset at 11 or 12 Girls age of onset earlier, at 9 or 10 Early onset of puberty possible in some At latest, should begin to tell them when their bodies begin to change (better to start sooner)

What They Need to Know Need to know what happens to other gender at same time Need to know they are developing into a woman or man (like mom and dad are already) Correct name of body parts and what they are used for Teach the synonyms of words (ie breasts and boobs)

Continued Explain that good and bad feelings will come as part of changing into an adult body. Girls who are interested in logic and facts may be interested in charting their own mood on a calendar to see if there is a cyclical pattern coinciding with their menstrual cycle. Have a collection of ideas to help adolescent boys and girls when their mood is low (remember risk of depression)

Explaining the Obvious is Important Some changes will only be associated with the same sex (e.g. a boy will not begin to grow breasts, but a girl will) Hair will only grow in certain places (the child may think the whole body eventually becomes progressively covered in hair like a werewolf) Explain that extra hair just grows on the underarms and on pubic area in women Explain that extra hair grows on the underarms and on pubic area, and on the chest, and face and chin of a man.

Some Topics for Puberty Social Stories for Girls ‘I am growing into a woman’ breast development and widening of the hips (could be titled ‘the shape of my body will change’) pubic and underarm hair development (title ‘extra hair will grow) onset of menstruation (title ‘I will begin to have my period’) growth acceleration (title ‘I will get taller’)

Topics for Puberty Social Stories for Boys ‘I am growing into a man’ growth acceleration (title ‘I will get taller’) pubic, underarm, and facial hair development (title ‘extra hair will grow’) testicular and penile enlargement (title ‘my body will look different’) spontaneous erections, sperm production, wet dreams (title ‘my body will do new things’) voice deepening (title ‘my voice will sound different’)

Hygiene and Health Hygiene needs to be addressed and good habits to be developed and emphasized Explain WHY important (social stories tailored to ability level) Health reasons - Stay healthy Social reasons - Make friends

Grooming, Dressing and Looking Good Important for teen to look like he ‘fits in’ Teach the teenager : Social reason for importance cleanliness and looking good What matches and what doesn’t What’s in and what’s not (get a peer to help) First impressions are crucial

Need to learn: Concept of Private vs Public Picture icon with word Private - figure in underwear Public figure with clothes Put outside / inside appropriate areas or rooms at home and special ed classroom

Masturbation Please note: I’m discussing this as a behavior. Parents need to make their own decisions based on their own religious or ethical beliefs on how to handle this behavior at home and how they wish to explain it to their child/children. However: Masturbation should never take place at school, or in public, or anywhere outside the home.

Masturbation Natural activity that you may not necessarily teach, but contain if it occurs You will be able to control where and when, but you will not be able to stop it Home and school need to work together on this if it is occurring at school Teen should be allowed a ‘private place’ at home he can masturbate

Home and school need to work together on this if it is occurring at school – what are the parents thoughts/beliefs etc? May be necessary to teach male how to masturbate if he is not figuring it out on own and becoming very frustrated and aggressive due to this. (‘you can have private time when you get home’ must be communicated to home that this was promised)

Social Supports, Language, Communication, and Boundaries Relationships: Social Supports, Language, Communication, and Boundaries

Relationships: Social Supports, Language, Communication, and Boundaries Teach ‘no’ Social Skills Training Hidden Curriculum Interdependence Teach concept of ‘private’ and ‘public’ Relationship Boundaries The notion of Circles

Relationship Boundaries Teaching about appropriate relationship boundaries should be part of social skills training Different relationships equals different boundaries : Appropriate types of conversation and behavior for each type of various relationship must be explained

Remember: Concept of Private vs Public Picture icon with word Private - figure in underwear Public figure with clothes Put outside / inside appropriate areas or rooms at home and special ed classroom.

Teach ‘No’ Teach No by offering items the student really hates. Or Position yourself between favorite TV video and child. He must push you away to see screen Pair action with No or ‘Go Away’

The Notion of Circles Private Circle Hug Circle Far-Away Hug Circle Handshake Circle Wave Circle Stranger Circle

Wave Circle Stranger Circle Handshake Circle Far-Away Hug Circle Hug Circle Private Circle

A Bit of Information re Abuse Safety A Bit of Information re Abuse

Safety: Abuse Statistics Children with disabilities 4 times more likely than typically developing peers to be victims of violence. Over 25% of children with disabilities have been exposed to violence (physical, sexual, emotional abuse or neglect). 20 % of children with disabilities experienced physical violence 14 % were exposed to sexual violence. Children with intellectual disabilities are particularly vulnerable to sexual violence compared to other children with disabilities.

Previous slide statistics from: Article: Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies (an analysis of 17 studies conducted between 1990 and 2010 involving more than 18,000 children in the US, UK, Sweden, Finland, Spain and Israel). Published in The Lancet, Early Online Publication, July 12, 2012

The Concept of Consent Dr. Nora Baladerian Estimated that 98% of cases of sexual abuse the perpetrator is well known, trusted by and in a care providing position for to the victim. Individual needs to learn that his whole body is private Have an Individualized Response Plan, way to communicate to trusted adult

Social Skills Training Students with ASD must be taught the skills they need to be successful socially. Some good ways to teach: Video Modeling Acting Lessons Social Stories Computer programs (ie the Social Express)

Acting Lessons Reccommended by many adults with AS Children learn to express -verbally and nonverbally- emotions in specific situations. Learn to interpret other’s emotions, feelings, voices. They engage in stimultations and receive feedback in a supportive environment

Social Stories Created by Carol Grey Is an individualized text or story that describes a specific social situation from the student’s perspective. May include where and why the situation occurs. Provides one or more options for what he can do in that particular situation Can be made simple or complex for different ability levels.

Social Stories Rules: Helpful: writing with youth youth the rules of behavior for each environment and reviewing them before going out Contingencies: Writing what could happen and how to handle that

Sexuality

Why They Need to Know ‘That is how many of our people will experience puberty in school; left behind and alone and feeling steadily worse about it. People who had time to before, now don't. That time is now shared with people who go around in groups of social pairs. There are rumors of social and even sexual activity that usually only serve to make our kids feel more left out. True, the people telling the stories are usually not nearly as active as they claim to be…

…Listening to a group of school boys in locker rooms is like listening to a blind man teach defensive driving. But to the people totally left out, especially autistic boys who have little personal experience to compare with what they are hearing, it sounds true enough.’ Jerry and Mary Newport, Autism - Asperger’s and Sexuality: Puberty and Beyond

Sexuality Sexual feelings are natural Some individuals on the spectrum want intimacy and want to get married, others do not Even if the teen is not interested in relationships or the idea of marriage and intimacy, it is important to teach them about sex they may be interested as they get older they need to understand what other teens are discussing they are at a higher risk of getting abused

Some Guidelines Determine your comfort level in discussing sexuality and sex with your youth. Look for resources Find specialist if you feel helpful Determine where your youth is at in their development. Obtain social and emotional age appropriate materials to use while teaching your youth.

continued If the youth is physically mature but delayed socially and emotionally, communicate openly and consistently with the youth's teachers, care providers, and if appropriate with local authorities, on where the youth is at in development, as well as what you are teaching them. This will help prevent social and/or legal issues arising from unintentionally inappropriate public behavior.

Before Seeing Specialist or Teaching Child, Consider: What are the youth's language and communication skills? What are the youth's abstract reasoning skills? Is the youth hyper or hypo sensitive to: Visual, Auditory, Tactile, Smell, or Taste? Does the youth have any other physical challenges that could affect learning? Where is the youth’s social and emotional (S/E) age in comparison with their chronological age and intellect?

Teach Early, Teach Often The Basics: Sexual awareness - What is sex, what is acceptable behavior and when is it acceptable? Boundaries - What boundaries should we have for our bodies, as well as when interacting with others? Who, When, Where and How of sex, sexuality and personal boundaries.

What that means Start with: Sex education (the basics – what neurotypicals consider ‘the birds and the bees’) Appropriate behaviors from others Appropriate behaviors towards others Giving or withholding consent (self advocacy) Next lessons: What is heterosexuality, What is homosexuality, people’s different choices sexually transmitted diseases and AIDS

Bullying

Bullying Statistics 32% of all middle school and high school students (US DOE) 60% of children with disabilities (Ability Path) 88% of students with ASD (MA State DOE) 71% of adults with ASD reported being bullied in schools as a child

Bullying Autism Life Skills Interviews: Most were bullied in school “All my life I have been bullied.” – Luke Jackson The worst part: the “silence of others” By federal law, now considered Disability Harassment Office of Civil Rights

Bullying Students on Spectrum at high risk for bullying Sometimes they are they intended victims, sometimes they put themselves in unsafe situations Poor at picking up social cues Poor at predicting behaviors Bullying should not be treated as a fact of life

More concerns with bullying in teen years Teens start to question authority, but ASD teen still follows rules and appears nerdy ASD Teen may appear rude with monotone voice or repeating what just said ASD Teen may appear sneaky because avoiding eye contact, shifting from foot to foot ASD Teen has good language skills but comprehension of language is not as good: literal understanding of language Does not pick up on all the non-verbal cues.

Bullying: What Can We Do? Specifics: The 3 R’s to Bullying Prevention The 3 R’s to Bullying Prevention: Recognize, Respond and Report – Dr. Lori Ernsperger Recognize: Bullying: “Any behavior that is unwelcomed by either party is bullying” Office of Civil Rights (OCR). Example : two best friends pushing each other in hallway , laughing is not bullying Respond: Intervene immediately : All school personnel must respond immediately when observing bullying

Continued (Dr. Lori Ernsperger) Report: Start with principal, work your way up if no response: superintendent , school board, OCR. Report it in writing and mail it in. Respond thru IEP goals : Increase self-advocacy skills so child can say “no” and improve speech intelligibility so child can interact with peers Practice ways to handle bullies: CALM Approach (Borba) : Cool down; Assert yourself; Look them in the eye; Mean it.

Report: Legal Ramifications A NY judge has ruled in a precedent setting case regarding bullying and harassment for students receiving special education services (T.K. v New York Department of Education, 2011). A 12 year old girl with autism and her parents had repeatedly complained to the principal of bullying in school. The school did not take adequate steps to investigate and prevent future bullying. The district court ruled in favor of the parents that their daughter was denied a Free and Appropriate Public Education (FAPE) based largely on the Office of Civil Rights Harassment and Bullying Guidance Letter (2010). Copyright Ernsperger 2012

Report: OCR Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act requires that ALL schools have a prompt reporting system for grievances for individuals with disabilities (OCR) Copyright Ernsperger 2012

Federal Policy Mandates School is responsible for insuring that bullying or harassment does not continue which requires long-term monitoring The protection of Section 504 or Title II is regardless of whether a complaint has been made by a student, the school must take action. (10/26/2010) Copyright Ernsperger 2012

Stopbullying.gov “Bullying is finally being recognized as a school safety issue that effects the entire school and must be addressed by school personnel.” US Secretary of Education Arne Duncan Copyright Ernsperger 2012

“ Believe in yourself. Do not doubt that you are the expert on your son or daughter. You have done your best so far, and you can be their guiding light for their future.” - Jeremy Sicile-Kira, A Full Life With Autism

Resources - Books Adolescents on the Autism Spectrum Autism Life Skills A 5 Is Against the Law! Social Boundaries: Straight Up! An honest guide for teens and young adults Taking Care of Myself The Girl’s Guide to Growing Up

More Resources The Guide to Dating for teenagers with Asperger Syndrome Intimate Relationships and Sexual Health Transcript Autism Safety and Crisis Prevention conference on AutismCollege.com Book: Exploring Feelings by Tony Attwood

Resources HBO Movie “Temple Grandin” HBO Movie “Autism is a World” (Sue Rubin) Incredible 5-Point Scale Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron

More Resources: Bullying and Abuse Transcript Autism Safety and Crisis Prevention conference on AutismCollege.com Information on Bullying from Dr. Lori Ernsperger: www.loriernsperger.com Informaiton on Abuse from Dr. Nora Baladerian www.norabaladerian.com www.disabilityandabuse.org Office of Civil Rights

Free Information Sign up for Autismcollege.com newsletter Facebook: Author page: www.facebook.com/chantalsicilekira (other page reaching limit) chantalsicile-kira.com Twitter: @sicilekira Google+ www.Jeremysicilekira.com (sign up for newsletter) Twitter: @jeremyisms

March 2012

Books: go to www.chantalsicile-kira.com