Finding Meaning: A Journey of Self- Knowledge. Finding Meaning: When do we begin to work on self-awareness self-knowledge?

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1 Finding Meaning: A Journey of Self- Knowledge Dave Spicer... Part 1 Presented by Catherine Faherty for ATEDM 29 March 2004 Father and Husband Sociology Student Writer Enjoyer of Music Former Computer Programmer Community Volunteer Teacher about autism Finding Meaning: A Journey of Self- Knowledge I am unique. I belong. When do we begin to work on self-awareness self-knowledge? I have a purpose. Presented by Catherine Faherty for ATEDM 29 March 2004 Self the essential person distinct from all other persons in identity Aware having perception or knowledge; conscious, informed When do we begin to work on Knowledge understanding gained by actual experience self-understanding gained by actual experience 1

I am unique. I belong. I am unique. I belong. I have a purpose. I am unique. A Real Person: Life on the outside by Gunilla Gerland pages 26-27 My mother tried to deal with my outbursts.

2 I am unique. I belong. I am unique. I belong. I have a purpose. I am unique. A Real Person: Life on the outside by Gunilla Gerland pages My mother tried to deal with my outbursts. But she couldn t cope and she called them furious temper tantrums, but to me... it was always something immensely important. 2

3 I didn t understand I connected whatever happened with what I could see. To me, everything boiled down to what I saw I desperately wanted to understand....i thought that everything had to look exactly the same the next day, for her to come back from school 3

4 and I wanted to understand. That doubt was a painful feeling...and I no longer knew what to think. Just when I thought I had grasped the connection between things... Would Kerstin not come home now? Couldn t she come home? Or didn t I understand anything? The newspaper had to be back in its place, that must be it. 4

5 My thinking was immensely concrete what I saw was what happened, neither more nor less. There had to be some way of understanding the world. Gunilla Gerland What is going to happen? When is it going to happen? Where are we going? What are they doing? When can I do the things I want to do? What are these things for? How do I get started? How do I know when it s finished? What happens next? When am I going home? Will I see my mother again? What is that person doing? Will the things I want ever happen? But I want to keep doing this now! How do I get what I want? What does this mean? What do you mean? and more..? Visually Structured Teaching helps life sense from the child s point of view. 5

6 What happens, where? Organize the physical environment. Physical Organization Makes sense of the environment. Defines boundaries. Helps modulate sensory distraction. Defines areas for specific activities. What is going to happen and when is it going to happen? Use a visual schedule. 6

7 First, then. First, then. First, then. Seeing what is going to happen. Visual Schedules Provide familiarity. Teach flexibility. Individualized. Build independence. Increase self-competence. What do I do with these things? 7

8 ? Structure the activity.?? 8

9 Structured Activities and Tasks Clarify the purpose. Show beginning and end. Organize materials. The basic work system 1. What am I supposed to do? 2. How much? 3.When am I finished? Use strengths. Individualized for independence. 4. What s next? 1. What work? 2. How much work? 3. When am I finished? 4. What s next? 9

10 Systems Work Systems or Activity Systems The day s schedule Shows: 1. Which tasks? 2. How many tasks? 3. When am I finished? 4. What s next? Builds self-competence. Variety of settings. Lifelong organizational skill. The work system TEACCH Structured Teaching Assessment: Guides to Individualizing the Schedule and the Work System Understand by seeing... Autism Society of North Carolina Bookstore 10

11 Understand by seeing... Understand by seeing... Provide visual cues to give more information - to clarify. Think How can I it visual? Individualize - Make it fit the person. How do things happen that I want to happen? Teach him to initiate communication. Provide visual cues to communication easier. Teach communication as an action. Experience communication as worthwhile. Minimize verbal reminders, so she learns to communicate on her own, to initiate. 11

Teaching Children with Autism-- Strategies to Enhance Communication and Socialization, Kathleen Quill, et. al.

12 A few resources: Remember Gunilla? Teaching Spontaneous Communication to Autistic and Developmentally Handicapped Children, Linda Watson, et. al. Teaching Children with Autism-- Strategies to Enhance Communication and Socialization, Kathleen Quill, et. al. Visual Strategies for Improving Communication Linda Hodgdon One day, the next day, and another day. There is meaning. I can figure it out. There is meaning! Vineland Adaptive Behavior Scales Male, 14-years, 2-months Vineland Adaptive Behavior Scales Male, 14-years, 2-months Domain Subdomain Age Equiv. Communication Receptive 3-11 Expressive 8-9 Written Daily Living Skills Personal 5-8 Domestic 8-10 Community 10-4 Socialization Interpersonal Relationships 3-6 Play/Leisure Time 5-6 Coping Skills 5-8 Vineland Adaptive Behavior Scales Male, 14-years, 2-months Domain Subdomain Age Equiv. Communication Receptive 3-11 Expressive 8-9 Written Daily Living Skills Personal 5-8 Domestic 8-10 Community 10-4 Socialization Interpersonal Relationships 3-6 Play/Leisure Time 5-6 Coping Skills

Thomas, 12 years old Overhead Projector - checklists Middle School Student Artist, illustrator, writer Teacher about autism Keep using structured teaching!

13 Thomas, 12 years old Overhead Projector - checklists Middle School Student Artist, illustrator, writer Teacher about autism Keep using structured teaching! GOOD reasons for using checklists: Uses visual skills. Makes new situations more familiar. Promotes independence. Allows for what s important to the person. Teaches flexibility. Teaches essential vocational skill. Builds cooperation. One more BIG reason: Decreases anxiety. Checklists are used for lots of things! Schedule of today s activities. What to expect on an outing, or a trip. Self- care sequence. Written instructions for a task, a project, school assignments, roles in a group, etc. Planning a social activity. Conversations with parent, therapist, teacher, And more... When you provide checklists, remember that they should... Be literal. Be adaptable. Show progress. Include interests. Show what s next. Include BREAKS! ( Quiet Time, Respite, Sanctuary Space, Alone Time, Call it anything you want, but always include it!) 13

14 I am unique. Self the essential person distinct from all other persons in identity Aware having perception or knowledge; conscious, informed 14

15 Finding Meaning: A Journey of Self- Knowledge The next thing I wanted to know was if there is a cure. Well, sorry if you don t like this answer, but no there most definitely is not. For those of us that have learned to accept our differences this is a very good thing. To cure someone of AS would be to take away their personality and some really cool abilities too. Part 2 Presented by Catherine Faherty for ATEDM 29 March 2004 Luke Jackson (age 13) Freaks, Geeks, & Asperger Syndrome:A User Guide to Adolescence pg. 36 Self the essential person distinct from all other persons in identity I am unique. Aware having perception or knowledge; conscious, informed Dave Spicer - Early conclusions about himself There is something wrong with me. It must be my fault that I m having so much trouble. No matter how hard I try, something goes wrong. I can t do things right. Everyone is mad at me. Other people can do the things I can t. To Whom It May Concern, I m highly interested in the auditions for the role of Charles Wallace in your play based on Madeline L Engle s Immmortal Classic, A Wrinkle In Time. I have chosen to audition for Charles Wallace because I related to him the most I find him to be like me mostly because I have autism. You see autism is when my brain seems to work on different terms than the average one. You may not be familiar with autism but one of the gifts it has given me is an excellent memory. Thomas, age 13 15

16 I have autism (ASD, Aspergers ) It s sense that I I can Autism is another way of thinking and being. It is not wrong to have autism. Aspergers What Does It Mean To Me? C. Faherty pp I am unique. Learn about one s uniqueness and ASD as a part of it. I found out that I am a perfect example of me, a person with Aspergers, rather than a poor imitation of everybody else. George Kerns, 53 Learn about one s strengths. Learn about autism, uniqueness... Learn about how others are the same, how they are different. Nurture self-competence, self-respect, and respect for others. When do I tell my child? Familiarity s things easier. Let your child hear the word, early on. When When indicated indicated by by your your child. child. Before Before adolescence. adolescence. I m not a statistic, I m autistic! Jack, age 7 16

QuickTime and a TIFF (Uncompressed) decompressor are needed to see this picture. Lay the groundwork: You: Read and/or listen to people with. Stop when you are full.

Stop when you are feeling more stressed than helped. Put the books on a shelf and listen to your child. S.T. strategies + Social Stories = sense.

org Free Time Sometimes the teacher says that it is free time. Free time can be different with every teacher. Some teachers say that students must be quiet during free time.

17 QuickTime and a TIFF (Uncompressed) decompressor are needed to see this picture. Lay the groundwork: You: Read and/or listen to people with. Stop when you are full. Stop when you are feeling more stressed than helped. Put the books on a shelf and listen to your child. Lay the groundwork: You: Read and/or listen to people with. Stop when you are full. Stop when you are feeling more stressed than helped. Put the books on a shelf and listen to your child. S.T. strategies + Social Stories = sense. Resources for Social Stories: - The Original Social Story Book - The New Social Story Book - Writing Social Stories with Carol Gray - My Social Stories - Free Time Sometimes the teacher says that it is free time. Free time can be different with every teacher. Some teachers say that students must be quiet during free time. Other teachers say that students can talk with each other during free time. Some teachers say that students must stay at their desk during free time. Other teachers say that students can walk around the room during free time. Some teachers say that students can walk or sit only in certain areas of the room during free time. 17

18 Other teachers say that is it free time for each student after he or she finishes the assignments. Another teacher might say that it is free time at the end of the day. Free time usually means that the students can choices in what they do. But even though it is called free, certain things are allowed, while other things are not. Each teacher s his or her own rules at free time. I can ask Mr. Jobst to write his specific rules for free time here: Page 2 Social Stories... Share relevant social information. Are literally accurate. As seen through his/her eyes. Are patient and reassuring. Follow guidelines. Over 50% should My Intelligent Solution With Legos Over 50% of social stories should be written to Acknowledge Achievement. Today I was building with Legos during Free Time. I liked what I was making and I liked building by myself. I had a plan in my mind. I collected all the fence pieces so I could use them later. It was Daniel s Free Time too. He likes building with Legos. He probably had a plan in his mind for what he was building, too. He was building something different than my idea, but he said that needed fence pieces too. Daniel started taking some of the fence pieces. I said that they were mine. He said that he needed them. We both were getting angry and an argument started. Sometimes in the past when I get angry, I stop thinking and throw things at the other person. The other person gets hurt and I get in trouble. Then I feel bad. But this time, I didn t throw things. I did something intelligent. I thought of a mathematical solution and did it quietly in my mind. I counted all the fence pieces. There were 8. I divided that number in half, which was 4. I gave 4 to Daniel. I kept 4. Then we both had an equal number. I said, I ll give you half of them. 18

19 Both of us had fence pieces to use. That made Daniel happy. Instead of arguing and throwing things and getting in trouble, I thought of an intelligent solution to the problem of two boys wanting the same thing. Ms. Faherty said that what I did was a good example of sharing. Lay the groundwork: You: Read and/or listen to people with. Stop when you are full. Stop when you are feeling more stressed than helped. Put the books on a shelf and listen to your child. S.T. strategies + Social Stories = sense. Social Stories to acknowledge achievement. Highlight strengths, talents, gifts. Observe how everyone is unique. Laurel Hoekman s article (Introducing Asperger s Syndrome) We, and those around us, have come to see that Asperger s is only one part of the special people that are our children We have taught Ben and Nathan that everyone has his or her own differences and that those differences (both strengths and weaknesses), help to each person special I realized that we had been laying the groundwork throughout these past years. Because Ben and Nathan already knew that they were different, just as they knew and celebrated the fact that everyone is different frojm one another, being told their label would not likely be devastating to them. Laurel Hoekman Explaining a Diagnosis The Morning News, Spring-Summer 2002 During adolescence? What if we waited, or we didn t find out until later? Read, listen to people with. Read good books about and by: Pg. 34, from Freaks, Geeks, & Asperger Syndrome, by Luke Jackson Partner with someone to help explain. Provide information, books, videos for your teenager. Focus on strengths, talents, gifts. Begin or continue laying the groundwork. Find or organize a social group. I first found out I had Aspergers, therefore, from an article in The Guardian that Julia gave Mum to show me. I was twelve years old when I read this article. Mum had just plonked it in front of me as if she had done it by accident. She knows that I read everything and anything. As I read through the article my first reaction was relief. It was if I had a weight lifted off my shoulders. I had every single symptom on this checklist. I read it and reread it, and then said to Mum, Do you think I could have AS? She simply said, Yes, you have. I must admit I did think, Well thanks a lot for telling me, but the relief was most definitely stronger than the annoyance 19

Who should tell my child? Probably you especially if child is young. Maybe someone else you/he/she trusts especially if older. Follow your instincts. e How do I do it? (Logistical Hints) Write.

20 Who should tell my child? Probably you especially if child is young. Maybe someone else you/he/she trusts especially if older. Follow your instincts. e How do I do it? (Logistical Hints) Write. Computer side-by-side. Print out. Make lists. (What s hard, what s easy, who else, other people s strengths-challenges ) Provide facts. Keep it simple, clear. Observe and respond to your child s pace. If using the book (Aspergers What Does It Mean To Me..?) be flexible, adapt, pick and choose. Self-knowledge is on-going. Consider these questions: Is there something wrong with me? Am I the only one like this? Isn t everyone like me? Are there other people like me? Explain the confusing behaviors he or she observes in others: Why do other kids.? Why does the teacher say? Help sense of things - write... 20

Finding Meaning: A Journey of Self- Knowledge

29 March 2004 If we are to achieve a richer

human potentialities, and so weave a less

Friends - www.teacch.com I am unique. I belong.

21 Finding Meaning: A Journey of Self- Knowledge Part 3 Presented by Catherine Faherty for ATEDM 29 March 2004 If we are to achieve a richer culture we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each diverse gift will find a fitting place. Margaret Mead Educate others: Understanding Friends - I am unique. I belong. Different abilities What does it feel like? How would you do things differently? 21

Different does not mean bad. Ετιμασαι το τραπεζι.

Educate others: Understanding Friends The Sixth Sense II

Remember these questions? Is there something wrong with me?

22 Different does not mean bad. Ετιμασαι το τραπεζι. QuickTime and a Photo - JPEG decompressor are needed to see this picture. Written by Ibi Lepscky Illustrated by Paolo Cardoni Educate others: Understanding Friends The Sixth Sense II Help your child communicate about ASD. Remember these questions? Is there something wrong with me? Am I the only one like this? Isn t everyone like me? Are there other people like me? Aspergers What Does It Mean To Me? C. Faherty 22

Friends are the ones who are nice. They re the ones who don t talk to me. Maria, age 15 I never thought that I would find someone who is like me, and who understands me.

Eas e Comfortable Familiar setting, Familiar people There are others like me. It s OK to be different. I m not alone.

23 Friends are the ones who are nice. They re the ones who don t talk to me. Maria, age 15 I never thought that I would find someone who is like me, and who understands me. This is the first time I have real friends. Thomas, age 8 Maria, age 25 Selfvalidation Friend s Skills Fun Belonging Social Groups Fun I am unique. I belong. Eas e Comfortable Familiar setting, Familiar people There are others like me. It s OK to be different. I m not alone. I was able to learn how to laugh at the right times, adopt the right tone of voice, gestures, posture, vocabulary... The thing I needed most was not copious feedback on how to act normally, but rather acceptance of me as I was. Dave Spicer Autistic and Undiagnosed: My Cautionary Tale 1998,

24 Structure for Social Groups Meet regularly Small group Familiar beginning Food Routine Checklists, Social Stories Discuss-vote-plan Familiar conclusion Discovery Criteria of Aspie By Attwood and Gray, in The Morning News, Fall 1999 DSM-IV B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: (1) Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (2) Apparently inflexible adherence of specific, nonfunctional routines or rituals (3) Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping ) (4) Persistent preoccupation with parts of objects DOA C. Cognitive skills characterized by at least four of the following: (1) Strong preference for detail over gestalt (2) Original, often unique perspective in problem solving (3) Exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines (4) Avid perseverance in gathering and cataloging information on a topic of interest (5) Persistence of thought Diagnosing Jefferson Asperger s and Self-Esteem Both Books by Norm Ledgin I am unique. I belong. 24

Use talents and enjoy interests. I am unique. I belong. I trust myself. I keep learning. I have a purpose. I trust myself. I keep learning. I have a purpose. I have a purpose. Friends, mentors, support.

25 Use talents and enjoy interests. I am unique. I belong. I trust myself. I keep learning. I have a purpose. I trust myself. I keep learning. I have a purpose. I have a purpose. Friends, mentors, support. Work for something you believe in. Work for something you believe in. If we can keep working to gain selfawareness, then as time goes on it becomes possible to do more than merely survive. It becomes possible to take an active part in charting the course of one s life. It becomes possible to find fulfillment. Dave Spicer Self-Awareness in Living with Asperger Syndrome, 1998, 2003 I am unique. I belong. We should acknowledge differences, we should greet differences, until difference s no difference anymore. I have a purpose. Adela A. Allen There is meaning. 25

Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome

Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome by Marci Wheeler, Social Worker, Indiana Resource Center for Autism Who, what, when, where, how, and why are