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

2. 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

3. 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.

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

5. “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

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

7. 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.

8. 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.

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

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

11. 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

12. 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

13. “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.

14. 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

15. 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

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

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

18. 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

19. 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

20. 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)

21. 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?

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

23. 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

24. Now, a fun exercise…..
BSAINXLEATNTEARS

25. 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?

26. 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)

27. 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)

28. 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)

29. 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.

30. 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’)

31. 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’)

32. 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

33. 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

34. 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

35. 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.

36. 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

37. 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)

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

39. 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

40. 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

41. 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.

42. 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’

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

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

45. A Bit of Information re Abuse
Safety
A Bit of Information re Abuse

46. 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.

47. 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

48. 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

49. 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)

50. 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

51. 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.

52. 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

53. Sexuality

54. 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…

55. …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

56. 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

57. 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.

58. 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.

59. 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?

60. 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.

61. 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

62. Bullying

63. 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

64. 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

65. 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

66. 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.

67. 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

68. 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.

69. 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

70. 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

71. 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

72. 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

73. “ 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

74. 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

75. 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

76. 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

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

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79. March 2012

80. Books: go to www.chantalsicile-kira.com