This document summarizes the story of Elias, a 9-year-old boy diagnosed with autism. It describes his early development and behaviors indicative of autism like lack of speech, stimming, and difficulty with social interactions. It then outlines his family situation and support services received, including ABA therapy and an aide in school. Finally, it provides background on autism spectrum disorders and strategies for supporting those on the spectrum.

1. Autism Spectrum Disorders EPSE 317

2. Auntie Lizzie’s Story Time, Cont’d: This is the story of Elias, a wonderful nine-year old boy whose parents and kid sisters love him immensely.

3. Elias’s Family Mom: Zoreh, teaches in the faculty of cultural studies at SFU Dad: Hamid, is a dentist Two younger sisters: Ester, 5, is in kindergarten Hannah is 3 (They both seem to be developing just fine.)

4. Elias was a lovely baby Never cried Slept through the night Never fussed if his parents left the room Learned to walk early

5. But by three, Elias’s parents began to worry They came from large families, so had seen many toddlers Elias was different Strange play: Lined up toys over and over Spun things Wasn’t talking at all at three Stiffened when anyone tried to hug him Hours-long tantrums; inconsolable, no matter what his parents tried

6. Hamid and Zorah suspected autism Seen at autism clinic at Sunny Hill Health Centre for Children Developmental paediatrician Psychologist Sure enough, a diagnosis of moderate autism Elias was eligible for the provincial Early Intensive Behaviour Intervention program. Program was effective:

7. ABA sessions http://www.youtube.com/watch?v=NbVG8lYEsNs&NR=1

8. When Elias started school he could: Use speech to communicate Still somewhat echolalic and had odd prosody He could take part in parallel play with one peer Groups caused him distress He was toilet trained He could read and print neatly, although comprehension was limited

9. Attends Lord Amherst Elementary School in Vancouver Elias has had an aide in his classroom since kindergarten He takes part in a modified academic program Reads and spells accurately, but can’t write a paragraph. Math computation is strong (he loves math) but he has difficulty with story problems

10. Socialisation and Behaviour are the Problems Can’t deal with change in routine Screams and hits himself in the face Has head-butted aides who tried to restrain him from self-injury Loud noises cause him extreme distress He can fixate on lights, staring at them and moving his head to and fro and resists attempts to draw him from this behaviour Anxious, asking repetitively “will there be a fire drill?” when he is uncertain of a situation.

11. http://www.youtube.com/watch?v=OhNhb40hPH0

12. A little history: Condition was first identified in the 1940s by Leo Kanner and Hans Asperger. In the 50s, the primary model of treatment was psychotherapeutic, as initally shaped by Bruno Bettleheim’s statement that the condition was due to “refrigerator mothers.” In the 60s, Bernard Rimland, founder of the Autism Research Institute, led the understanding of autism as a neurologically-based disorder, not related to early parenting Also in the 60s, Ivar Lovaas developed the method of intervention and training now called applied behaviour analysis (ABA).

13. Autism Spectrum Disorder Autism Childhood Disintegrative Disorder Asperger’s syndrome Rett’s Syndrome Pervasive Developmental Disorder not otherwise specified (PDD-NOS)

14. ASDs Neurologically based Incidence is debated—from 1 in 500 to 1 percent. Often said to be on the increase. Can appear in a variety of combinations Can vary in severity from mild to very severe.

15. Three Areas of Impairment Social interaction Communication “ Restrictive, repetitive, and stereotyped patterns of behaviour” Sometimes cognitive impairment but not always.

16. May present with other neurological disorders including epilepsy

17. Autism Cognitive deficits (often) Behavioural deficits Unable to relate to others Lack of functional language Sensory processing deficits or anomalies Behavioural excesses Self-stimulation Resistance to change Bizarre and challenging behaviours Self-injurious behaviours

18. Autistic people, often Can present with “splinter skills,” an offensively dismissive term for areas of strength. May be apparently uneven in gross- and fine-motor development. Have no eye contact or very odd eye contact. Show oddities in emotion; laugh or cry for no apparent reason Have tantrums (autistic rage)

19. Asperger’s Syndrome Impaired social interaction Non-verbal communication (eye-gaze, posture, facial expression) Failure to develop peer relationships appropriate to developmental level Doesn’t spontaneously seek contact with others Lacks social and emotional reciprocity

20. Restricted or stereotyped patterns of behaviour Abnormally intense or focused preoccupation with one or more areas of interest Insistence on sameness or nonfunctional rituals Stereotyped and repetitive motor mannerisms Persistent preoccupation with parts of objects Clinically significant impairment in social, occupational or other important areas of function

21. No clinically significant general delay in language No clinically significant general delay in cognitive development or age appropriate self-helps skills.

22. Rett Syndrome Limited to girls (on X chromosome) Typical development until 8 to 16 months 6-18 months reduced eye contact, hand wringing (1-4 years) Rapid loss of fine motor and spoken language, difficulty in initiating motor movement 2-10 years on—motor problems, seizure disorders Thereafter—can last for decades, reduced mobility, muscle weakness, rigidity, eventual death.

23. Childhood disintegrative disorder Rare Onset between 2 and 10 years DSM-IV— Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas: expressive or receptive language social skills or adaptive behavior bowel or bladder control Play motor skills

24. Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) Typically for children with late onset of characteristics of autism or Aspergers. “ Atypical autism” --some symptoms not present or to very mild extent Not due to schizophrenia, schizotypal personality disorder, or avoidant personality disorder.

25. That Was the Bad News… (or most of it) Here’s the Good News: Strong Advocacy High public profile Early intervention available

26. Ministry of Education and ASDs ASDs are categorised as Level II on the supplementary funding listing Many children with ASD diagnoses have full-time aide support Provincial Outreach Program for Autism and Related Disorders is well established

27. Diagnosis In order for a child to be eligible for financial support at preschool level and to bring supplementary funding to a school district, he or she must diagnosed through a specified set of standards and guidelines. The BC Autism Assessment Network (BCAAN) determines these guidelines, but they can be completed privately. www.phsa.ca/AgenciesAndServices/Services/Autism/default.htm .

28. Standards and Guidelines Included Multidisciplinary assessment must include: Psychological assessment Speech-language assessment Medical evaluation It may also include: Occupational therapy assessment Comprehensive family assessment Psychiatric assessment Other expert assessments

29. Kids with ASDs Need Language support (often, even with kids with Aspergers) Socialisation – Adapted academic programming Support for sensory issues Support for emotional-behavioural issues

30. Language Support Initially directed by SLP assessment Often provided by classroom aide Aide should have support from SLP In-class, or out of class “My name is..” http://www.youtube.com/watch?v=YPA5qB_lQvg

31. Social Skills Can be linked with Speech-Language Or explicit Social Skills courses “ Social Stories”

32. Using my Quiet Spot Sometimes, when people touch me, I get really upset. Sometimes, where there are lots of people around me, I start to feel upset. I feel like I need to run away. I feel like I need to yell! I can tell my teacher or (insert aide’s name here) I need to go to my quiet spot to calm down.

33. I can say, ‘Quiet spot!’ when I feel as if I am upset. I can also show a picture of my quiet spot to my teacher or (insert aide’s name here) when I feel that I need to go to my quiet spot. I should try to go to my quiet spot before I shout, cry or hit someone. I will try to tell my teacher or (insert aide’s name here) when I need my quiet spot. If I can’t, I will show them a picture card of my quiet spot. The will know what I mean. I can stay calm at school. My quiet spot helps me.

34. Echolalia --Speech that echoes Immediate: How are you, Charlie ..You Charlie? Delayed Quotes from TV ads, repetitive phrases, etc. Can have communicative importance “ You deserve a break.”

35. Self-stimulatory behaviour “Stimming” Repetitive behaviour Rocking Manipulating something Calming intent Is this limited to people with autism? Find acceptable “stims”

36. Socialisation Link with mutual enjoyment of interests, or activities Music Art Birding Computers

37. Build on Strengths Build on interests Introduce change in tiny increments Recognise distress as real even if stimulus is odd

38. What can we do for Elias?

39. Relate, enjoy! http://www.youtube.com/watch?v=2wt1IY3ffoU

40. A Last Caution Snake oil merchants are drawn to autism like flies to dung. http://www.asatonline.org/ The Association for Science in Autism Treatment