All About Autism Welcome! What is Autism/ASD? Managing a New Diagnosis These notes available on www.uwindsor.ca/autism under “Workshops” welcome Congratulations and thank you to the small committee of parents, Cathy Coppens who got this started - Jodie Goulet and Tracy Regal, - Cheryl Huczel and ASI and other agencies! Amazing to get so many agencies to co-operate on anything! Notes from my talk are on Summit Centre website – URL on bottom of each page who are in audience (parents, professionals)? www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 1

Communication Disorder What is Autism? Sticky Behaviour Communication Disorder difficulty with change intense interests repetitive no/delayed speech 2-way conversation not reciprocal weak nonverbal weak play and Low Social Interest friendships for level not reciprocal weak sharing eye contact weak nonverbal www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 2

Autism/ASD is… a spectrum disorder developmental often “Autism Spectrum Disorders” from very delayed to above average abilities from mild to moderate to severe autistic behaviours developmental abilities & symptoms usually improve with good programming Everyone with autism is an individual They don’t stay the same - almost always see improvement, sometimes more rapid improvement in preschool years with intensive early intervention www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 3

ASD: 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 medical conditions – 6% have 7 clearcut medical disorders potentially causally associated with autism (cerebral palsy, Fragile X, Tuberous Sclerosis, PKU, neurofibromatosis, congenital rubella, Down’s Syndrome) - other medical events of potential etiological significance (encephalitis, congenital anomalies, other rare medical syndromes) www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 4

First Signs of ASD: Behaviour At 12 months of age, may see unusual eye contact visual tracking disengagement of visual attention orienting to name imitation social smiling reactivity, social interest & affect sensory behaviors d Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005 www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 5

First Signs of ASD: Other Temperament: 6 months - 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 d www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 6

Causes of ASD 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 d www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 7

More Children with ASD? 60 per 10,000 children (Fombonne, 2003) 1 in every 166 children 1 in every 455 girls 1 in every 101 boys more children identified now ??? – better identification? - better public awareness - wider definition - misdiagnoses? increased prevalence, incidence? Fombonne (2003). Epidemiological surveys of autism and other pervasive developmental disorders. JADD, Vol. 33(4), pp 356 – 382. We do not know if ASDs are becoming more common in the United States. today more children are being identified as having an ASD than in the past. studies that have looked at how common ASDs are often used different ways to identify children with ASDs, and it is possible that researchers have just gotten better at identifying these children. also possible that professionals know more about ASDs now and are therefore more likely to diagnose them correctly. Also, a wider range of people are now being classified as having ASDs, including people with very good language and thinking skills in some areas who have unusual ways of interacting or behaving. Misdiagnosis may account for rise in autism cases Important question of whether ASDs are truly becoming more common www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 8

Diagnosing ASD: need… standardized behaviour ratings of child standardized parent report of child’s behaviours early developmental history Psychologist or Physician with training & experience - NEVER diagnose solely on basis of parent report www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 9

Early Diagnosis of ASD Why? early intervention  better prognosis so parents know connect to autism community support for families early diagnosis resulting in early, appropriate and consistent intervention has been shown to be associated with improved long-term outcomes - AAP ISSUES GUIDELINES ON DIAGNOSIS AND MANAGEMENT OF AUTISM Pediatrics, the peer-reviewed scientific journal of the American Academy of Pediatrics (AAP). May 7th, 2001 www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 10

Managing a New Diagnosis How many of us; remember facing a family member’s new diagnosis of ASD in the past? are facing a family member’s new diagnosis of ASD right now? are dealing with a suspected diagnosis of ASD right now? www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 11

Managing a New Diagnosis of ASD Emotional Reactions acceptance is a process everyone reacts differently it takes time! Action Needed! don’t “wait and see” www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 12

Emotional Reactions to a New Diagnosis of ASD shock denial sadness anger blame guilt fear helplessness www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 13

Emotional Reactions to a New Diagnosis of ASD grief for the child you imagined overwhelmed relief hope www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 14

Acceptance Spiral www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 15

Action Needed! Don’t “wait and see”. 60 to 75% biological mother is the first person concerned about child’s development! Take Action! to help your child to support your other children to support your relationships to support yourself www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 16

Practical Steps get a 2nd or 3rd opinion? Social Support Document Inform Yourself Early Intensive Intervention Monitor your other children Give yourself time www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 17

More Assessment? get a 2nd or 3rd opinion on ASD diagnosis? pros & cons other assessments; Psychological: intellectual, adaptive Speech and Language medical Occupational Therapy Physiotherapy www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 18

Autism brings strong families closer can drive distant families apart www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 19

Research: Social Support helps parents of children with ASD helps siblings of children with ASD AND helps children with ASD make more progress d www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 20

Social Support tell your family and friends acceptance is a process for them too give them information on ASD get them involved! say yes to offers of help balance needs of all family members take care of yourself!!! www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 21

Let Your Family & Friends Know… Relatives may not know what they can do to support you, your child with autism, and your other children. how they can support you and your family www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 22

Support can be… driving child care listening shopping volunteering being with you activities with your other children showing you that they care! d www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 23

Document Start a file with your child’s records folder, binder, book your child’s developmental milestones copies of all reports, notes, etc. names & contact info for all professionals this will save you time & grief in the future! www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 24

Inform Yourself All About Autism meetings ask other parents Internet ASI Resource Library books conferences Evaluate all information you get! www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 25

Early Intensive Intervention Applied Behaviour Analysis (ABA) or Intensive Behaviour Intervention (IBI) strongest research support in producing lasting improvements in learning and behaviour for young children with autism Summit Centre for Preschool Children with Autism – also Intensive Parent Training 2007 Thames Valley Children’s Centre – The Autism Program South West Region www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 26

Monitor your other children siblings have increased risk of ASD’s also monitor your other children for any other social, language, learning, behaviour or emotional difficulties most siblings have no developmental issues balance needs of all your children still need support! Summit Centre has sibling support group for ages 4 to 12 years www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 27

Give Yourself Time acceptance is a process many parents feel overwhelmed www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 28

“Even the smallest footsteps can cross great distances.” All drawings by enrolled children All photos with consent of parents and staff “Even the smallest footsteps can cross great distances.” www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 29

Comments? Questions? Concerns? Thank you! Comments? Questions? Concerns? mgragg@uwindsor.ca www.summitcentre.org © Marcia Gragg, PhD, CPsych, Nov. 8, 2006 p. 30