What is Autism Welcome to All About Autism

What is Autism? Welcome! to All About Autism These notes are on www. uwindsor. ca/autism under “Workshops” Sponsored by: ] Dedicated Parents, ] Autism Society Ontario Windsor/Essex Chapter, ] Autism Services Inc. , ] Children First, ] Children’s Rehabilitation Centre, ] Ontario Early Years Centres, ] The Summit Centre for Preschool Children with Autism, ] Thames Valley Children’s Centre The Autism Program South West Region www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 1

What is Autism? Behaviour Communication no/delayed speech difficulty with change ê 2 -way conversation intense interests not reciprocal repetitive and weak nonverbal “sticky” Social weak play low social interest ê friendships for level not reciprocal weak sharing eye contact weak nonverbal www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 2

Autism is… Øa spectrum disorder • from very delayed to above average abilities • from mild to moderate to severe autistic behaviours Ødevelopmental • abilities & symptoms may improve with good programming www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 3

Autism: Associated Features may occur, not required for diagnosis • cognitive; deficits, strengths & weaknesses (50 -70% intellectual impairment) • unusual motor behaviours • unusual sensory behaviours • eating, sleeping, drinking • attention; joint, shifting, focus • mood; anxieties & fears • medical conditions, seizures www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 4

Red Flags immediate evaluation if • no babbling by 12 months • no gesturing by 12 months • no single words by 16 months • no 2 -word phrases by 24 months (not just echolalic) • any loss of any language or social skills at any age (30%) Filipek et al, Amer. Acad. Neurology, 2000 www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 5

First Signs of Autism: Behaviour At 12 months of age, may see unusual • eye contact • imitation • visual tracking • social smiling • disengagement of visual attention • reactivity, social interest & affect • orienting to name • sensory behaviors Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005 www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 6

First Signs of Autism: Other Temperament: • 6 months, marked passivity & low activity level • 12 months, extreme distress, fixating on particular objects, & rarely in a positive mood Delayed expressive & receptive language Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005 Challenging behaviours may be the first sign of high functioning autism www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 7

Causes of Autism • neurological disorder • 4. 6 boys to every girl • genetic susceptibility • environmental triggers? • not related to parenting or learning • not related to MMR vaccine or preservatives in vaccines www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 8

More Children with Autism? Ø 60 per 10, 000 children (Fombonne, 2003) • 1 in every 166 children • 1 in every 455 girls • 1 in every 101 boys Ø more children identified now ? ? ? – better identification? - better public awareness - wider definition - misdiagnoses? • increased prevalence, incidence? www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 9

Diagnosing Autism: need… • standardized behaviour ratings of child • standardized parent report of child’s behaviours • early developmental history • Psychologist or Physician with training & experience www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 10

Early Diagnosis of Autism Why? • early intervention better prognosis • so parents know • connect to autism community • support for families www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 11

Explaining Autism to Your Relatives Welcome! to All About Autism These notes are on www. uwindsor. ca/autism under “Workshops” Sponsored by: ] Dedicated Parents, ] Autism Society Ontario Windsor/Essex Chapter, ] Autism Services Inc. , ] Children First, ] Children’s Rehabilitation Centre, ] Ontario Early Years Centres, ] The Summit Centre for Preschool Children with Autism, ] Talk to Me, ] Thames Valley Children’s Centre The Autism Program South West Region www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 12

Explaining Autism to Relatives… Ø “you watched too much television” Blame Ø “just spank him” Misplaced advice Ø “your husband didn’t talk til he was 4” Denial www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 13

Explaining Autism to Relatives… Ø 20 family members join ASO Support Ø grandmother volunteers Support Ø fundraising relatives Support www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 14

Research Shows Support Ø helps parents of children with autism Ø helps siblings of children with autism AND Ø helps children with autism make more progress www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 15

So, how to get Support from your relatives? • grandparents • brothers • sisters • aunts • uncles • cousins www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 16

Were Previous Relationships close ódistant comfortable ótense easygoing óconflictual Is it worth it? ? Can it improve? www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 17

Autism brings strong families closer can drive distant families apart www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 18

Your Relatives & Your Child’s Diagnosis? denial? anger? bargaining? depression? acceptance? It’s a process - it takes time! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 19

Give Them Information Maybe they will see… www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 20

What is Autism? Behaviour Communication no/delayed speech difficulty with change ê 2 -way conversation intense interests not reciprocal repetitive and weak nonverbal “sticky” Social weak play low social interest ê friendships for level not reciprocal weak sharing eye contact weak nonverbal www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 21

Get Them Involved! 1. invite them to meetings for your child 2. introduce them to your child’s professionals 3. take them to a workshop 4. give them an ASO membership as a gift 5. borrow them a book or video from ASI 6. invite them to an autism pasta dinner, picnic 7. take them on a tour of your child’s school www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 22

Let Your Relatives Know… how they can support you and your family www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 23

Support can be… Ø driving Ø child care Ø listening Ø shopping Ø volunteering Ø being with you Ø activities with your other children Ø showing you that they care! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 24

If Your Relatives Can’t Support You… Seek Support elsewhere! • your spouse • friends • religious groups • support groups • online (e. g. Mom 2 Mom) • other parents of children with autism www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 25

Autism: Coping with Challenging Behaviours www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 26

Basic Supports for All Children Supportive Environment basic needs: food, shelter, medical care, nurturance access to preferred toys, activities, interests & friends opportunities for success at the child’s level www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 27

Autism Spectrum Disorders (ASD) Children with ASD learn differently. They need different supports to help them learn & maintain behavioural control. • a range of symptoms, developmental levels Ø prevent problems while child is young Ø avoid getting negatively reinforced by your child www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 28

General Helpful Supports for Children with Autism/PDD Ø Make things predictable Ø Reduce language Ø Use visual supports Ø Broaden preoccupations Ø Reduce anxiety www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 29

Further Support for Children with Challenging Behaviours Medical/Dental Intervention: A thorough checkup may identify physical problems contributing to the challenging behaviour especially when the child’s behaviour pattern has recently changed. Jonathon's story, by Mary Matsoukas. "Jon has been afflicted with. . . allergies. . . sinus headaches, asthma, migraines & psychomotor seizures. ” Advocate, 24(3), Fall 1992, pp. 8 -9. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 30

Discover What the Child’s Behaviour is Communicating Observe the child AND the environment carefully. Ask an impartial person to observe. Chart the target behaviour systematically. You may be surprised! Find out the child’s motivation for the challenging behaviour. Escape is the most common motivation for children with autism/PDD. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 31

Four Common Motivations for Challenging Behaviour I need Attention: behaviour to get social attention from other people. I want Tangibles: behaviour to get food, toys, or activities. I must Escape: behaviour to get away from a person, demand, or situation. I feel Sensory: behaviour to get new or different sensory input - may like or dislike the current sensory input, or be overwhelmed. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 32

Develop Individual Strategies to Support the Person Individualize to target the child’s motivation for the challenging behaviours. Take into account; triggers, preferences, methods to calm the child, the child’s skills & needs. Develop a three-pronged plan including avoidance, reactive & proactive strategies. Using only reactive strategies rarely works! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 33

Three Part Plan Avoidance (Before): prevent some of the challenging behaviours before they happen by modifying the environment, task demands, & our behaviour. Reactive (During): to help end challenging behaviours when they are happening as quickly & with as little fuss as possible. Proactive (After): to teach new coping skills to replace challenging behaviours. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 34

Autism: Count Us In! Do you or someone you know have a child with difficulties in: q Communication q Social Interaction q Behaviour www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 35

Research Questions 1. How many children with ASD born between 1999 & 2003 are there in Windsor/Essex? 2. Are there more children with ASD in Windsor & Essex County than in other parts of Ontario? www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 36

Research Questions 3. Is Applied Behaviour Analysis (ABA), or Intensive Behaviour Intervention (IBI), getting to young children with ASD in Windsor/Essex? 4. What needs do local parents see for their families & for their young children with ASD? www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 37

Autism: Count Us In! … is a research study to help answer these questions. But to do this. . . We need your help! www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 38

Who can Participate: Parents of children who are: Ø Born between 1999— 2003 Ø Living in Windsor-Essex County Ø Diagnosed with an Autism Spectrum Disorder - OR Ø Showing some symptoms listed www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 39

How You Can Participate Ask a Research Assistant at a community event to fill out a questionnaire! - OR Call 255 -1234 Please leave a message. A trained research assistant will call you back in a day or two. www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 40

Autism: Count Us In! We will ask you to answer questions about: q Your child’s diagnosis or symptoms q Your child’s treatment & needs q Any support & training needed for your family Your answers will be confidential. You can choose not to give your name, etc. You will be eligible for a raffle for a gift certificate! www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 41

Research Team Principal Investigator: Marcia Gragg, Ph. D. , C. Psych Research Assistants: Samantha Scapinello, M. A. , Ph. D. Psychology Student Andrea Cooper, BSc Nursing Student Vara Parameswaran, BCN Student Parent Advisor: Irene Baert www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21 /05 p. 42