ERIC ED485479: Autism Spectrum Disorders: Guidance on Providing Supports and Services to Young Children with Autism Spectrum Disorders and Their Families. Technical Assistance Manual.

Technical Assistance Manual

Autism Spectrum Disorders

Guidance on providing supports and services to young
children with autism spectrum disorders and their

families

June 2004

New Mexico Public Education Department
J erry Apodaca Building
Special Education Bureau

300 Don Gaspar • Santa Fe • New Mexico 87501-2786

The State of New Mexico

Autism Spectrum Disorders Technical Assistance Manual

June, 2004

Governor

Bill Richardson

Office of the Secretary of Education

Dr. Veronica Garcia, Secretary of Education
Dr. Kurt Steinhaus, Deputy Secretary for Assessment & Accountability
Don Moya, Assistant Secretary for School Finance
Dr. Patricia Parkinson, Assistant Secretary for Instructional Support
Sam Howarth, State Director of Special Education

New Mexico Public Education Commission

Mr. Scott B. Barthel, Hobbs
Mr. J ohn A. Darden, Las Cruces
Mr. Alfred J. Herrera, Espanola
Mr. J ohn R Lankford, Roswell
Ms. Eleanor B. Ortiz, Santa Fe

Ms. Millie Pogna, Albuquerque
Mr. J ohnny R Thompson, Churchrock
Ms. Christine V. Truj illo, Albuquerque
Ms. Flora Sanchez, Albuquerque
Ms. Catherine M Smith, Mmbres

The contents of this document were developed under a grant from the U. S.
Department of Education. However, the contents do not necessarily represent the
police of the U. S. Department of Education, and you should not assume endorsement
by the Federal Government.

Primary Authors:

Pat Osbourn Director, Project SET, Center for Development & Disability

Fletcher Scott Staff, Project SET, Center for Development & Disability

The NM PED would like to
this document:

Matthew Nelson
Lauriann King
Gay Finlayson
Pamela Bell
Marianne Williamson
Dena Slifer
Zoe Migel
Nancy Hudson
J acque Hair
Beth Provost
Wendy Kalberg
Brian Lopez

acknowledge the following people for their contributions to

Parent, ICC
Parent, Project SET
Parent, SWAN

Early Childhood Coordinator, MORE - ELFS

Childfind Coordinator, Carlsbad Municipal Schools

Therapy Services Manager, New Vistas

Early Childhood Coordinator, Las Cumbres Learning Services

Early Childhood Coordinator, Tresco Tots

Special Ed. Coord., Las Cruces Public Schools

Asst. Professor, PT., UNM

Early Childhood Specialist, CASAA

Psychologist, UNM Early Childhood Evaluation Program

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Judy Ledman
P. Kodituwakku

Andy Gomm
Martha Applegate
Sam Howarth
Harriet Forman

Pediatrician, UNM Early Childhood Evaluation Program
Neuropsychologist, UNM Center for Development &
Disability

Program Manager Dept, of Health - FTT Program
Regional Manager, Dept, of Health - FIT Program
Special Education Director, Public Education Department
Preschool Coordinator, Public Education Department

The NMPED would also like to acknowledge the young children with ASD and their
families in New Mexico who continue to teach us on a daily basis.

Published June 2004

This technical assistance document is a joint project of the Department of Health,
Family Infant Toddler Program and the Public Education Department, Special
Education Bureau, with IDEA Part 'C' and Part 'B' 619 funds. Reguests for copies of
this document may be made by contacting either:

Department of Health
Family Infant Toddler Program
1190 St. Francis Dr.

Santa Fe, NM 87502-6110
505.827.2578

Or Downloading from

http: / / www. health, state, nm. us/ ltsd/ fit

Public Education Department
Special Education Bureau
300 Don Gaspar
Santa Fe, NM 87501-27861
505.827.6541

http://www.ped.state.nm.us/ seo

The document published by the Department of Health, Family Infant Toddler Program
may be formatted slightly differently, but the content is exactly the same.

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Foreword

Although we will never fully understand the world of the child with ASD, we can look
to adults who are able to talk about their experiences with autism. One such person
is Temple Grandin who has authored books on the subj ect of autism, drawing heavily
from her own personal experiences. Here are several excerpts from her book
"Emergence: Labeled Autistic" (1989) and her article "Afy Mnd is a Web Browser:

How People with Autism Think" (2000):

"Objects that move rapidly also attract the attention of people with autism.

When I was younger, I liked to play with automatic doors at supermarkets. I
enjoyed watching the rapid opening movement... As a child, my favorite things all
made rapid movements. I liked flapping flags, kites, and model airplanes that
flew."

"Spinning was another favorite activity. I would sit on the floor and twirl
around. The room spun with me. The self- stimulatory behavior made me feel
powerful, in control of things. After all, I could make a whole room turn
around. "

"Birthday parties were torture for me. The confusion created by noisemakers
suddenly going off startled me. I would invariably react by hitting another child
or by picking up an ashtray or anything else that was handy and flinging it across
the room."

"Only by interviewing people did I learn that many of them think primarily in
words, and that their thoughts are linked to emotion. In my brain, words act as a
narrator for the visual images in my imagination. I can see the pictures in my
memory files."

While there are common behaviors and traits in children with autism, we must
remember that each young child is unigue. Our challenge, in partnership with
parents, is to engage the child in activities that will help him/ her learn.

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Table of Contents

Page

Introduction 7

Background 8

What is Autism Spectrum Disorder (ASD)? 8

What Causes ASD? 8

How Often Does ASD Occur? 8

Identification 9

Is Pervasive Developmental Disorder the Same as ASD? 9

What are the Early Signs of ASD? 10

Who Can Make the Diagnosis of ASD? 13

What Evaluation/ Assessment is Recommended When a ^

Diagnosis of ASD is Suspected?

What are the Specific Criteria that a Team Uses to Make a
Diagnosis of ASD in a Young Child?

National Recommendations for Serving Young Children
with ASD

What are the National Recommendations for Serving Young

Children with ASD?

Recommendations for Diagnosis and Assessment 19

Recommendations Regarding Family Role 21

Recommended Characteristics of Effective Programs 22

Recommendations Regarding Intervention/ Educational 25

Services

Recommendations for Effective Treatment Outcomes/ Goals 26

Treatment and Intervention Strategies 28

Reinforcement 28

Applied Behavioral Analysis 28

ABA Chart 29

Direct Instruction/ Teacher Directed Learning 29

Discrete Trial Training 29

Naturalistic Teaching/ Child Initiated Strategies 30

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Pivotal Response Training 30

Incidental Teaching 31

Activity Based Instruction 32

Peer Mediation/ Coaching 32

Functional Routines/ Environmental Structure 33

Functional Routines 33

Structured Teaching 34

PECS - Picture Exchange Communication System 35

Social Stories 35

Summary 37

Appendices:

Appendix A - M-CHAT: Modified Checklist for Autism in Toddlers 39

Appendix B - Diagnostic Criteria for Autism Spectrum Disorders 40

Appendix C - Basic Skills Needed by Young Children with ASD 44

Appendix D - Sample Outcomes/ Goals for Young Children with ASD 47

Appendix E - Case Studies 49

Frequently Asked Questions 52

Bibliography 55

Resources 57

Glossary 59

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Introduction

Project SET (Specialized Early Teaching for Young Children with Autism) was funded in
2000 to begin training and technical assistance throughout New Mexico for very young
children with Autism Spectrum Disorders (ASD) and their families. Project SET is a
jointly funded project of the Department of Health - Family Infant Toddler (FIT)
Program and the Public Education Department, Special Education Bureau. Proj ect
SET is a program of the Southwest Autism Network at the University of New Mexico -
Center for Development & Disability.

In the Fall of 2002, Project SET staff began work on a technical assistance document
for the state of New Mexico that would outline recommended practices in
intervention for very young children with ASD. Proj ect SET staff researched
recommended practices in the field as well as documents produced by other states.

The field of autism is rapidly changing with increased funding for research into causes
and treatments of this Autism Spectrum Disorder. This document will focus primarily
on behavioral and communication treatment approaches that may be used within
early intervention and/ or preschool special education. Other treatment approaches
that are not covered in this document include biomedical and dietary treatments as
well as complementary approaches such as art, music and animal therapy.

Information on other treatment approaches can be obtained from the Autism Society
of America (www.autism-society.org).

Throughout this document we have included the term "early childhood" to refer to
children from birth to 8, however our primary intended audience is for families and
providers of children birth to 5. This technical assistance document is intended to be
used by personnel in early intervention agencies and local education agencies as well
as family members of children with ASD.

Many children with ASD are demonstrating promising outcomes as a result of intensive
and specialized intervention. In New Mexico our challenge is to ensure that all
children with ASD and their families have access to high guality intervention that
meets their individual needs.

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Background

What is Autism Spectrum Disorder (ASD)?

Autism, or autistic disorder, is a neurobehavioral syndrome characterized by onset
prior to age 3. Characteristics include severe differences in interaction with other
people, communication deficits, as well as restricted and stereotyped patterns of
interest and behaviors. Increasingly, the term Autism Spectrum Disorder (ASD) is
being used to refer to the wide range of symptoms and characteristics in these areas,
which vary from mild to severe. Along the continuum, children may exhibit any
combination of these behaviors in varying degrees of severity.

Given this broad spectrum of characteristics, the need for individualized interventions
becomes critical.

What Causes ASD?

In recent years, much attention and time from researchers worldwide has been given
to determine the causes of ASD. Although current research links autism to biological
or neurological differences in the brain, much remains unknown about the causes of
these differences. Both environmental and genetic causes are being targeted in
research. In terms of genetics, it is estimated that there is a 5-8%recurrence risk of
having a child with ASD when one child in the family has this diagnosis. There is also
a 60% - 90%chance of identical twins both being affected with ASD; in fraternal twins
there is a 10%likelihood that both twins will have ASD if one twin is diagnosed. We do
know that ASD is NOT caused by bad parenting, mental illness or poorly behaved
children.

How Often Does ASD Occur?

There appears to be mounting evidence that earlier prevalence rates for ASD may
have under-counted children with this diagnosis. Recent studies have revealed 2 to 6
children per 1, 000 for the entire spectrum. Given these figures, conservative
estimates indicate that there may be approximately 3,600 to 10,800 children and
adults with ASD in New Mexico, with an estimated 270 - 810 children under the age of
five. We are seeing more and more young children with signs of ASD.

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Identification

Is Pervasive Developmental Disorder the Same as ASD?

Diagnosis of medical disorders is based on various categories found in a diagnostic
manual printed by the American Psychiatric Association (Diagnostic and Statistical
Manual of Mental Disorders, DSM-IV). Pervasive Developmental Disorders (PDD) is the
official category in the diagnostic manual under which the various autism spectrum
disorders are listed. Since the printing of DSM-IV, many in the field refer to PDD as
Autism Spectrum Disorders to properly reflect the spectrum nature of this diagnosis.
The following specific diagnoses are included under the category of PDD:

♦ Autism, also called Autistic Disorder

Onset for autistic disorder is within the first 36 months of life. Children may be
initially perceived as deaf with significant or absent language and social
communication skills. Unusual behaviors such as stereotyped movements are
common after about 3 years of age.

♦ Pervasive Developmental Disorders - Not Otherwise Specified

In PDD- NOS (also referred to as atypical autism), the child has difficulties in
social interaction and other areas consistent with a diagnosis but does not meet
the full criteria for a diagnosis of autism.

♦ Asperger's Disorder

Although early cognitive and language development may appear to be normal,
social deficits become prominent as the child enters preschool and fails to
respond appropriately to peers. Generally, children with Asperger's Disorder
have unusual interests that are pursued with intensity.

♦ Childhood Disintegrative Disorder

With childhood disintegrative disorder, there is a prolonged period of normal
development followed by marked regression in multiple areas and development
of many features that are reminiscent of autism.

♦ Rett's Disorder

Very early growth and development is normal but is followed by a deceleration
in head growth, development of marked mental retardation, and unusual hand-
washing stereotypies and other features.

All of these diagnosis share common features of ASD and may be diagnosed
separately. The chart on the next page illustrates the spectrum of Autism.

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PERVASIVE DEVELOPMENTAL DISORDERS

Autistic

Disorder

Rett's Childhood Asperger's

Disorder Disintegrative Disorder

Disorder

PDD/ NOS

(not otherwise
specified)

Explanation: Given the low occurrence of both childhood disintegrative
disorder and Rett's disorder, early childhood providers may not see many
children with these diagnoses. Children with Asperger's syndrome are
generally not referred for early intervention services because they have
typical language and cognitive skills; Asperger's Disorder is generally not
diagnosed until the child is in preschool, as the social deficits become
apparent, therefore, an early interventionist in a birth to 3 program may not
have much contact with these children. Of children on the autism spectrum,
early childhood providers will be most likely to see children who will later
carry a formal diagnosis of atypical autism or autistic disorder. Many of the
children with ASD begin receiving early intervention or school services
because of developmental delays, including communication delays. It is
imperative that early childhood providers be aware of some of the early signs
of possible ASD and make appropriate referrals for a correct diagnosis.

What are the Early Signs of ASD?

Because of delays in development, the majority of young children with ASD will
receive early intervention services prior to receiving a formal diagnosis. Often they
have significant social communication/ language delays that are further delayed than
the rest of their development. In the communication area, early warning signs of ASD
are as follows:

□ No babbling, pointing or gesturing by 12 months.

□ No single words by 16 months.

□ No 2 word spontaneous phrases by 24 months.

□ No response to name.

□ ANY loss of language or social skills at any age (see example on next page).

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Example: J ennifer is a two and a half year old child referred for evaluation for
ASD. Her mother stated that around 18 months of age, she had
approximately 10 words, such as "mama", "dada", "juice", etc. She
stated that around 2 years of age, she stopped using these words, and
now is no longer talking.

The Checklist for Autism in Toddlers (CHAT) is a screening instrument designed to
detect the core features of autism in children as early as 18 months. The checklist
was modified recently (M-CHAT). The checklist consists of 23 yes- no guestions; the
authors recommend that any child who fails three or more items on the entire M-
CHAT or two or more of the "critical" items should receive a comprehensive
evaluation. The critical items on the M- CHAT include the following:

Does your child take an interest in other children?

Does your child ever use his/ her index finger to point, to indicate interest in
something?

Does your child ever bring objects over to you (parent) to show you something?

Does your child imitate you (e.g., if you make a face- will your child imitate?)

Does your child respond to his/ her name when you call?

If you point at a toy across the room, does your child look at it?

See Appendix A for the complete M-CHAT.

Early Indicators for Screening of Autistic Spectrum Disorders

Developmental indicators from birth - 60 months in the areas of sensory- motor,
speech- language, and social domains have been outlined by B.J. Freeman at UCLA.
These are indicators and not diagnostic criteria; the presence of a number of these
indicators does not necessarily mean the child will have ASD.

Age

Sensory-Motor
(restricted repertoire
of activities)

Speech-Language
(cognitive development)

Social

(relating to people and
to objects)

Birth - 6
months

■ Persistent rocking

■ Inconsistent response to
stimuli

■ No vocalizing

■ Crying not related to
needs

■ Does not react
differentially to adult
voices

■ No anticipatory social
responses (when sees or
hears mother)

■ Does not guiet when held

■ Poor or absent eye to eye
contact

■ Fails to respond to
mother's attention and
crib toys.

6- 12
months

■ Uneven motor
development

■ Difficulty with responses

■ Babbling may stop

■ Does not imitate sounds,
gestures or expressions

■ Unaffectionate, difficult
to engage in baby games

■ Does not initiate baby

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to textures (e.g.,
problems transitioning to
table foods)

■ Failure to hold objects or
attachment to unusual
objects (or both)

■ Appears to be deaf

■ Preoccupation with
fingers

■ Over or under reaction
to sensory stimuli (or
both)

■ Does not give obj ects
when reguested to do so.

games

■ Does not wave "bye-bye"

■ No interest in toys

■ Does not show distress
when mother leaves room

■ Absent or delayed social
smile

■ Does not repeat activities
that he/ she enj oys

■ Does not extend toys to
other people

■ Does not differentiate
strangers from family

12 - 24
months

■ Loss of previously
acguired skills

■ Hyper or Hyposensitivity
to stimuli

■ Seeks repetitive
stimulation

■ Repetitive motor
mannerisms appear
(e.g., hand flapping,
whirling)

■ No speech or occasional
words

■ Stops talking

■ Gestures do not develop

■ Repeats sounds non-
communicatively

■ Words used inconsistently
and may not be related to
needs

■ Withdrawn

■ Does not seek comfort
when distressed

■ hfay be over distressed by
separation

■ No pretend play or
unusual use of toys (e.g.,
spins, flicks, lines up
obj ects)

■ Imitation does not develop

■ No interest in peers

24-36

months

■ Unusual sensitivity to
stimuli and repetitive
motor mannerisms
continue

■ Hypersensitive or
Hyposensitive (or both)

■ Mite or intermittent
talking

■ Echolalia (e.g., repeats
television commercials)

■ Specific cognitive
abilities (e.g., good rote
memory, superior puzzle
skills)

■ Appears to be able to do
things but refuses

■ Leads adult by hand to
communicate needs

■ Does not use speech
communicatively

■ Does not play with others

■ Prefers to be alone

■ Does not initiate

■ Does not show desire to
please parents

36-60

months

■ Repetitive behaviors may
decrease or occur only
intermittently

■ No speech

■ Echolalia

■ Pronoun reversal

■ Abnormal tone and
rhythm in speech

■ Does not volunteer
information or initiate
conversation

■ hfey ask repetitive
guestions

■ Foregoing characteristics
continue but may become
interested in social
activities

■ Does not know how to
initiate with peers

■ Upset by changes in
environment

■ Delay or absence in
thematic play

B.J. Freeman, Ph.D.

Professor of Medical Psychology, UCLA School of Medicine Department of Psychiatry
and Biobehavioral Sciences, Los Angeles, CA 90024-1459

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Who Can Make A Diagnosis of ASD?

Parents and early childhood providers are often the first ones to realize that a child
may exhibit characteristics of an autism spectrum disorder, since characteristics of
autism occur before 36 months of age. Given the increased awareness of ASD, early
childhood providers should discuss with parents the aspects of the child's
development that is atypical or different. They should also be able to respond
appropriately to a parent's question "Does my child have autism?" by knowing the
early signs of ASD as well as the signs that rule out ASD. Although the maj ority of
early childhood personnel are not qualified to make a diagnosis of autism, they should
be able to refer families who wish to pursue this diagnosis to the appropriate
specialists.

Developmental pediatricians, psychologists, child psychiatrists, or neurologists
typically make a diagnosis of autism if they have experience in the area of ASD.
Although children are being diagnosed at younger and younger ages, the majority of
early diagnoses are made between the ages of 2-3. Diagnosis may be part of a
multidisciplinary developmental evaluation; all developmental evaluations should
address the child' s unique strengths and learning challenges. If a diagnosis is not part
of a developmental evaluation, a complete medical and/ or psychological evaluation is
recommended, with a referral to a specialist in autism. In New Mexico, the UNM Early
Childhood Evaluation Program (ECEP) is able to evaluate and diagnose ASD for
children before the age of 3.

Explanation: All early childhood providers must have an understanding of
early warning signs and be able to assist parents in finding an adequate
evaluation/ assessment if they wish to pursue the diagnosis. If a child does
not have a formal diagnosis but exhibits many of the characteristics, the
early childhood providers must still insure that the child's need for intensive
interventions are met.

What Evaluations and Assessments are Recommended When a
Diagnosis of ASD is Suspected?

The American Academy of Child and Adolescent Psychiatry recommends a complete
assessment upon referral for ASD. This assessment should include the following:

History:

♦ Review of pregnancy, labor and delivery and early post-natal history.

♦ Review of communication and motor milestones.

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♦ Any aspects of child's development that have been unusual.

♦ When and why the family first became concerned with the child's
development.

Medical History:

♦ Discussion of possible seizures.

♦ Vision or hearing impairments.

♦ Family history of autism or developmental disorders.

Intervention History:

♦ The child's response to intervention.

♦ Review of previous evaluations, therapy reports, intervention reports.

Assessment of Child:

♦ Observation: It is important to observe the child in a variety of settings;
observing the child with the parents and siblings is often useful. Typically,
more than one session is needed.

♦ Developmental Level: This should include the child's ability in the areas of
communication, social interaction and play as well as restricted or unusual
interests/ behaviors. These behaviors should be evaluated relative to the
child's overall developmental level.

♦ Cognitive Abilities: This will establish a child's overall level of functioning. It
is important to separate verbal from nonverbal performance when possible.

♦ Adaptive Skills: This will provide additional information that will assist in
establishing priorities for intervention.

♦ Speech/ Language/ Communication Assessments: Actual use of language (both
receptive and expressive) should be assessed; articulation and oral motor
difficulties should be noted; social use of communication should be assessed at
whatever level of communication skills the child exhibits.

♦ Occupational and Physical Therapy Assessments: Motor development should be
assessed as well as degree of hyper- or hypo- sensitivity or other sensory issues.

♦ If the child is not currently receiving services, a determination is made
regarding eligibility for the FTT Program or for preschool special education.

Medical Assessment:

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♦ Physical examination of the child is concerned with a search for a treatable
medical condition or for conditions with important implications for the family,
e.g. inherited medical conditions such as fragile X syndrome or tuberous
sclerosis.

♦ Medical history to include immunization history and routine laboratory studies.

♦ Audiological and visual examinations: Brainstem auditory evoked response
audiometry should be conducted if behavioral audiometry is not definitive.

♦ Neurological Assessment: Observation of the child for symptoms of seizures
should be conducted.

♦ Laboratory Studies: There are no specific laboratory tests for autism; fragile X
testing is typically indicated. There is now a DNA test for fragile X syndrome.

♦ The presence of dysmorphic features may suggest obtaining genetic screening
for inherited metabolic disorders or chromosome analysis.

♦ If a medical specialist is not part of the team, a referral should be made. This
may be to a community physician with experience in working with children with
ASD; a referral could be made to the Center for Development & Disability to
assist the local physician with diagnosis or additional testing.

What are the Specific Criteria that a Team Uses to Make a Diagnosis of
ASD in a Young Child?

The DSMrIV provides the diagnostic criteria for autism, or autistic disorder, and a
diagnosis of ASD is made based on complete or partial fulfillment of that criteria.
According to the DSMrIV, the following are the criteria for Autistic Disorder.

Criterion A

A total of six (or more) items from sections (1), (2), and (3) with at least two from
section (1) and one each from sections (2) and (3):

(1) Qualitative impairment in social interaction, as manifested by at least two of
the following:

a) Marked impairment in the use of multiple, nonverbal behavior, such as eye to
eye gaze, facial expression, body postures, and gestures to regulate social
interaction.

b) Failure to develop peer relationships appropriate to developmental level.

c) A lack of spontaneous seeking to share enjoyment, interests or
achievements with other people (e.g., by a lack of showing, bringing, or
pointing out objects of interest.)

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d) Lack of social or emotional reciprocity.

Explanation: In very young children with ASD, impairments in social interaction
often take the form of decreased eye contact and/ or decreased use of gaze shifting
for communication (e.g., looking from a person to an object or activity and back to
the person), decreased use of gestures such as pointing, and decreased joint
attention (e.g., looking at an object when an adult looks at it). Young children
with ASD often have difficulty understanding the concept of taking turns (social
reciprocity), even at the level of infant-type "back and forth" games. If they bring
an object to an adult, it is usually to have the adult do something (such as open the
lid), rather than to show the adult the object for enjoyment. It is difficult to
determine a child's peer relationships if a child is not in a preschool setting or in
other ways exposed to peers. Observing the child in a variety of settings or
eliciting this information from parents will be important.

(2) Qualitative impairment in communication as manifested by at least one of

the following:

a) Delay in, or total lack of, development of spoken language (not accompanied
by an attempt to compensate through alternative modes of communication,
such as gesture or mime).

b) In individuals with adeguate speech, marked impairment in the ability to
initiate or sustain a conversation with others.

c) Stereotyped and repetitive use of language or idiosyncratic language.

d) Lack of varied, spontaneous make believe play or social and imitative play
appropriate to developmental level.

Explanation: Freguently young children with ASD do not consistently respond to
their name; lack of a consistent response to name is a reliable discriminator between
ASD and other developmental delays. In very young children with ASD, impairments in
communication usually take the form of significant delays in expressive language that
are not accompanied by attempts to compensate with gestures. If young children are
vocalizing, they may use an odd j argon or unusual repetition of sounds or words
(echolalia). Some young children with ASD learn language in different ways,
sometimes repeating "chunks" of words together, such as sentences they memorize
from their favorite video. Young children with ASD often have difficulty imitating
motor and verbal activities or play routines, and their play activities are usually more
mechanical (e.g., building or lining up blocks, pushing cars back and forth) than
symbolic.

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(3) Restricted repetitive and stereotyped patterns of behavior, interests, and
activities, as manifested by at least one of the following:

a) Encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus.

b) Apparently inflexible adherence to specific, nonfunctional routines or rituals.

c) Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping,
twisting, or complex whole body movements).

d) Persistent preoccupation with parts of objects.

Explanation: Very young children with ASD may not develop repetitive mannerisms
(e.g., hand flapping) or interest in rituals or routines (e.g., only eating from a green
plate) until after age 3, so many young children with ASD may not meet this criteria
until they are older. More subtle motor mannerisms, however, have been noted in
some young children, such as walking on tiptoes, liking to spin, or a tendency to
carry obj ects around continually. Many young children have difficulty with
transitioning from activities or from places. Some children like common obj ects
such as paper, pens, trucks, or trains to an unusual degree.

Criterion B

Delays or abnormal functioning in at least one of the following areas, onset prior to
age 36 months: social interaction, language as used in social communication, and
symbolic or imaginative play.

Criterion C

The disturbance is not better accounted for by Rett's Disorder or Childhood
Disintegrative Disorder.

Explanation: When a child is referred for an evaluation/ assessment for the
diagnosis of ASD, individuals who have been providing intervention services prior to
age 3 can play a critical role in assisting the multidisciplinary evaluation team.
Sometimes community based providers/ therapists may be a part of the evaluation
team and in other instances they will provide valuable information to the team.

This may include the child's responses to intervention, what tends to work for the
child and what intervention has been unsuccessful. Observation of the child, which
should occur in more than one setting, can be completed by those who are already
involved with the child. Information regarding the child's developmental levels that
are observed on a daily basis will be an important adjunct to standardized tests.

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In New Mexico, children birth - 3 who are suspected of ASD can be referred to the
Early Childhood Evaluation Program (ECEP) at the UNM- Center for Development &
Disability. Children are evaluated by an interdisciplinary team skilled in the
diagnosis of learning differences in young children. The team typically consists of a
pediatrician, cognitive therapist or psychologist, speech-language pathologist, and a
physical or occupational therapist. The composition of the team freguently
includes community providers and therapists as well.

For children over the age of three, referrals are typically made to community
providers, local educational agencies, or independent practitioners with experience
in the diagnosis of ASD in young children. The Southwest Autism Network's (SWAN)
Autism Clinic at the Center for Development & Disability is a multidisciplinary clinic
that sees children over the age of three for diagnosis and assessment. Team
members consist of a developmental pediatrician, clinical neuropsychologist,
speech-language pathologist and a family liaison.

For review of additional Diagnostic Criteria for Autism Spectrum Disorders, please
see Appendix B.

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National Recommendations for Serving
Young Children with ASP

What are the National Recommendations for Serving Young Children
with ASD?

Children with ASD present complex intervention needs. Given the broad spectrum
nature of ASD, it is unlikely that any one intervention or treatment will benefit all
children with ASD. Similarly, no two families of children with ASD are alike; each will
have unique strengths, stressors and needs.

The U. S Department of Education's Office of Special Education Programs charged the
National Research Council (NRC) to integrate scientific, theoretical, and policy
literature and evaluate the scientific evidence concerning effects and features of
interventions for young children with ASD. Their specific charge was to suggest
recommendations for young children with ASD birth - 8 years of age, which would
include early diagnosis, early intervention, preschool and school programs for this age
group. The NRC report Educating Children with Autism was published in 2001.

Recommendations for Diagnosis and Assessment

NRC Recommendation 1: Children with any ASD (autistic disorder, Asperger's
disorder, atypical autism, PDD-NOS) regardless of severity should be eligible for
special educational services under the category of autism spectrum disorder as
opposed to "other health impaired", "developmentally delayed", etc.

Explanation: It appears the intent of this recommendation is that each state
has an accurate estimate of the number of children with ASD and that given
their intensive service/ educational needs, program planning must take into
account the child' s unique learning needs. New Mexico special education
regulations allow the category of "developmentally delayed" to be used until a
child is 9 years of age, however 6.31.2. 10. F (2) (a) NMSA states "the
developmentally delayed classification may be used at the option of individual
local education agencies, but may only be used for children who do not qualify
for special education under any other available disability category." The
diagnosis of autism can help the family and team to gain an understanding of
the unique and intensive services that are recommended for children with ASD.

NRC Recommendation 2: Children identified with an autism spectrum disorder
should have a formal multidisciplinary evaluation to include evaluation of social
behavior, language and nonverbal communication, adaptive behavior, motor skills,

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atypical behaviors, and cognitive status. Included in this evaluation should be a
systematic gathering of information from parents about their concerns and their
observations of their child.

Explanation: Expertise and experience are reguired to assess children with
ASD. Most standardized measures are not sufficient to determine an
appropriate plan for children with ASD. Multidisciplinary teams need expertise
and time to pool their collective information and to use the information
gathered from parents to address the unigue learning needs of these children.

NRC Recommendation 3: Younger children who receive a diagnosis of ASD should
have a follow-up diagnostic and educational assessment 1-2 years after their initial
evaluation.

Explanation: Although there is not adeguate data to determine the average
age for diagnosis for children with ASD within New Mexico, children are
generally receiving earlier diagnosis. After children leave the Family Infant
Toddler (FIT) Program, they generally enter public schools. There is no
system- wide follow up within New Mexico for a diagnostic evaluation for young
children other than educational assessments they may receive in the public
school settings. This should be addressed to insure that early diagnoses are
accurate and that developmental changes in young children be documented
and utilized to continue to develop appropriate programming strategies.

NRC Recommendation 4: All professionals having contact with young children
should have information about the patterns of behavior seen in very young
children with ASD. They should also have an understanding of the importance of
early diagnosis and intervention.

Explanation: The Department of Health - Family Infant Toddler Program as
well as the Public Education Department - Special Education Bureau have made
a concerted effort to provide information to all professionals through their
funding of projects (e.g., Project SET of the Southwest Autism Network)
designed to provide training, technical assistance and consultation regarding
young children with ASD. The need for this training will continue to grow as
more and more children are diagnosed. Early intervention agencies and local
education agencies should avail themselves of training and technical assistance
opportunities.

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Recommendations Regarding Family Role

NRC Recommendation 1: Parent perspectives and concerns should actively shape
the educational planning.

Explanation: This recommendation is based on the principle of family
centered practice that applies to working with all children. Parents of
children with ASD know their child best and have unigue perspectives
about their children. Children with ASD freguently demonstrate skills in
the home setting that they may not show in other settings; professionals
need to be cognizant of this and be certain that outcomes/ goals include
the generalization of skills learned in one setting to other settings. New
Mexico has a strong history of family centered practice. Involving the
family in the development of the IEP/ IFSP and in the intervention process
is key to successful planning. Professionals must listen to the concerns and
priorities of each family and pay attention to cultural differences.

NRC Recommendation 2: Parents should have access to information about the
nature of autism spectrum disorders, range of alternatives within best practices in
early education, sources of funding support and their child's rights.

Explanation: Several organizations within the state can assist parents with
information and support, including the Southwest Autism Network and
Parents Reaching Out. The UNO resource library at the UNM- Center for
Development & Disability has an extensive collection of books and videos
available to families and community providers.

NRC Recommendation 3: As part of the early intervention, families should be
provided with opportunities to learn specific technigues for teaching their child
and reducing challenging behaviors. These may include:

♦ Teaching sessions.

♦ Ongoing consultation for problem solving.

♦ In-home observations.

Explanation: Many families are able to provide some of the active
engagement time with their child, but will need training and consultation in
order to carry out recommended teaching technigues. Much of this can be
conducted by the early childhood staff working directly with the parent,
however it may sometimes be beneficial for parents to attend a group
training session.

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NRC Recommendation 4: Mental health support services should be provided to
families that are experiencing stress. These services should be extended to include
families of children at least up to age 8.

Explanation: Although not specifically mental health support services,
support groups for families do occur throughout the state through the
Southwest Autism Network's regional parent coordinators. These support
groups meet to discuss community issues, access to services, and general
family support. Regional parent coordinators also provide one to one support
for families. There are currently six regional parent coordinators located
throughout the state. Early intervention and public schools can refer parents
to the Southwest Autism Network for access to these regional parent
coordinators. One reason that parents freguently contact SWAN is for
support related to the stress of raising a child with ASD. Parents ask for
assistance with sleep and feeding issues most freguently, often needing a
supportive listener who is familiar with the uncertainties of raising a child
with ASD. Parents Reaching Out is another parent information center that
provides parent networking, training and resources for families.

Recommended Characteristics of Effective Programs

Although there are a variety of interventions that are effective for children with ASD,
there is general consensus regarding features of effective programs for young children
with ASD. Specific programs have services that are tailored to the child's unigue
learning profile as well as to family's preferences and needs. The following features
are critical and recommended as part of effective programs.

NRC Recommendation 1: Entry into intervention programs as soon as an ASD
diagnosis is considered.

Explanation: Clearly, this suggests that early diagnosis is important as is
early intervention. The NRC committee does not recommend entry into
intervention only after a diagnosis is confirmed but as soon as it is
considered. If a diagnosis of ASD is considered, the child should receive
intervention that highlights these critical features.

NRC Recommendation 2: Active engagement in intensive instructional
programming for a minimum of a full school day, 5 days (at least 25 hours) a week,
with a full year of programming. This will vary given an individual child's
chronological age and developmental level, and the desires of the community.

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Explanation: Young children with ASD require intensive engagement with
adults in activities that promote their learning. By definition, children with
autism tend to spend little time engaged in purposeful and appropriate
activities and more often are disconnected from their surroundings and
people around them. Intervention therefore, should be aimed at increasing
the amount of time that the child is engaged throughout the day in order to
meet the outcomes / goals identified in the IFSP/ IEP.

While recognizing the need for intensive engagement for young children
with ASD, New Mexico does not recommend a specific number of hours.

The precise number of hours, specified on the IFSP/ IEP, will vary depending
on: the child's age; severity of autistic symptoms; rate of progress; the
child's health and/ or tolerance for the intervention; and on the family's
circumstances. The IFSP/ IEP must be developed based on the unique needs
of the child rather than on the basis of child' s disability alone, as required
by regulation. It is not possible to accurately predict the optimal number
of hours that will be effective for any given child.

While engagement can include time spent by family members and other
caretakers, IFSP/ IEP teams should be aware of not overburdening families.
The IFSP/ IEP team in partnership with the family and other community
providers must develop a comprehensive plan that delineates who will
provide the intervention as well as when and where it will occur. The plan
should consider the needs of the child and family with regards to health
care, behavioral health, family support and training, as well as respite.

The implementation of a plan that is coordinated and crosses a variety of
agencies has also been recommended by a statewide advisory group and is
reported in "Health Care Systems and Persons with Autism in New Mexico"
( 2004 ).

Children with autism benefit from predictable and regular intervention
according to an established schedule. Intervention should occur year round
and the IFSP/ IEP should address vacations, holidays and other variations in
the schedule in advance.

It is recommended that the number of hours and the location where
services are provided be reviewed and revised periodically. The child's
progress should be reviewed in order to determine if the intensity of hours
should be increased or decreased.

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NRC Recommendation 3: Planned teaching opportunities around brief periods of
time (15-20 minute intervals for younger children) with one to one adult time and
small group instruction to meet individualized need.

Explanation: This program feature suggests that a proactive, planned
approach to teaching young children with ASD is essential. The NRC committee
recommendations include both one to one instruction with an adult and small
group instruction.

The family and other IFSP/ IEP members need consider the setting! s) where
services may be delivered. This may include "natural environments" such the
child's home, childcare settings, family home providers, public parks and other
community setting, as well as classroom settings for preschoolers. It is
recommended that children with ASD be included in settings with typically
developing peers as much as possible, while at the same time recognizing the
child's need for one to one instruction.

The Autism Society of America, citing the NRC recommendations, suggests that
local agencies be responsible for establishing a clear mechanism to determine
the appropriate natural environments for service delivery with consideration of
the concerns, priorities and resources or the child's family. In addition, other
considerations should include the age of the child, developmentally
appropriate activities, the outcomes/ goals and strategies/ objectives on the
child's IEP/ IFSP, the need for generalization across multiple settings and the
evidence of best practices, including intensity and length of services. Given
the type of outcomes/ goals that need to be addressed for young children with
ASD, the ASA recommends that, where possible, services begin in the home
and then extend to childcare centers, play groups and preschool programs.

NRC Recommendation 4: Inclusion of family component, including parent training.

Explanation: Parent training is again mentioned in this feature. As was
mentioned earlier, parents reguire opportunities to learn how to support their
child's development, information regarding recommended programming and
regarding their rights. Early intervention agencies as well as preschool
programs should insure that parents have access to this training. Parents also
reguire support and networking with other families.

NRC Recommendation 5: Low student/ teacher ratio (no more than 2 young
children with ASD per adult in the classroom).

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Explanation: This program feature speaks to the need for intensity of
intervention/ education for both early intervention and special education. A
low student/ teacher (developmental specialist) ratio allows for one to one
teaching as well as work within small groups. Since children with ASD may
have educational assistants who are working with them, this feature also raises
training issues for those in instructional settings.

NRC Recommendation 6: Ongoing program evaluation and assessment of the
child's progress to insure that program is meeting the child's individualized needs.

Explanation: This program feature is important for all those working with
young children with ASD; it implies that children with ASD are expected to
make progress and learn. Frequent program evaluation is necessary to be
certain that the child is responding in a positive manner to the intervention,

Recommendations Regarding Intervention/Educational Services

The most appropriate outcomes/ goals for children with ASD are similar to those for all
children: personal independence and social responsibility. The NRC Committee
recommended that both the IEP and the IFSP are the vehicles for planning and
implementing appropriate intervention and education strategies/ objectives. All
outcomes/ goals and strategies/ objectives for children with ASD should be observable
and measurable; they should be expected to be completed within one year and add
significantly to the child' s participation in education, community and family life. The
following are recommended goals for young children with ASD.

♦ Social skills to include imitation, social initiations, responses to adults and
other children, play skills both parallel and interactive play with others.

♦ Expressive verbal language, receptive language and non-verbal communication
skills.

♦ Functional communication system, which may include pictures, photos,
communication devices.

♦ Increased engagement and ability to participate in developmentally
appropriate tasks, including ability to attend to the environment.

♦ Ability to respond to an appropriate motivation system.

♦ Fine and gross motor skills that are age appropriate.

♦ Cognitive skills such as basic concepts of cause/ effect, early problem solving
skills and pretend play skills.

♦ Replacement of challenging behaviors with more conventional and appropriate
behaviors, such as teaching the child to take his mother's hand instead of
running into the street.

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♦ Independent skills necessary for successful participation in preschool and
school programs: completing tasks independently, following instructions,
re guesting help.

See Appendix C for sample basic skills for young children with ASD.

All outcomes/ goals should be assessed in an ongoing fashion to determine the child's
response to intervention and to refine the child's program as necessary.

Recommendations for Effective Intervention Outcomes/Goals

The NRC committee's recommendations for effective treatment outcomes/ goals were
again based on empirical findings. These recommendations dovetail with the
committee's finding of effective programs. The committee recommended the
following:

NRC Recommendation 1: Based upon a child's individualized outcomes/ goals,
services should be implemented as soon as a diagnosis is suspected*. A child's and
family's needs and strengths should be considered as a schedule of services is
developed. These services should include a minimum of 25 hours per week, 12
months a year— this time should be when the child is systematically engaged in
developmentally appropriate strategies/ objectives.

*In New Mexico, sendees will be determined by the IEP/IFSP team after criteria for eligibility and need
for sendees have been established.

Explanation: The key words in this treatment outcome/ goal are that the
child is "systematically engaged in developmentally appropriate
strategies/ objectives". The recommendations are clear that young
children with ASD, to be systematically engaged, need repeated, planned
teaching opportunities organized around 15-20 minute intervals of time.
With regard to the intensity of service, a combination of inclusive
playgroups, day care, home visits and other options should be explored.
The key to this combination is to be certain that in all settings, the child is
engaged in developmentally appropriate learning activities.

NRC Recommendation 2: A child must receive sufficient individualized attention on
a daily basis to achieve objectives; this individualized attention may include
individual therapies, developmentally appropriate small group activities, direct one
to one contact with teaching staff/ parents/ family.

Explanation: These treatment outcomes/ goals speak to the need for a
coordinated system of supports, interventions and education.

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NRC Recommendation 3: Ongoing assessment of child's progress towards meeting
strategies/ objectives must be documented.

Explanation: Professionals working with the child must collect data that is
useful and meaningful in order to determine how well the child is meeting
outcomes/ goals and when modifications to strategies/ objectives may be
necessary.

NRC Recommendation 4: Children should receive intervention and instruction with
typically developing peers to the extent that this leads to specific educational
outcomes/ goals.

Explanation: This recommendation clearly states the value of inclusive
community settings including child day care settings, preschool settings,
and playgroups to "the extent that this leads to specific educational
outcomes/ goals. "

The NRC committee recommends that certain kinds of intervention should have
priority. These include the following:

♦ Functional, spontaneous communication should be a primary focus.
Programming for young children should be based on the assumption that the
child will learn to speak. Teaching both verbal language and alternative modes
of functional communication should be investigated.

♦ Social instruction should occur across a variety of contexts, with adults and
peers.

♦ Teaching of play skills should focus on play with peers as well as the
appropriate use of a variety of toys.

♦ Outcomes/ goals for cognitive development should also be emphasized, such as
generalization and maintenance of new skills. Rates of acguisition of new skills
should be documented. Methodology for teaching new skills may differ from
those used for generalization and maintenance.

♦ Positive, proactive approaches should be used to address challenging behaviors.

♦ Functional academic skills should be taught, as appropriate to the child.

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Treatment and Intervention Strategies

Children with ASD have a wide variety of complex intervention/ education needs.
Typically, a single strategy will not work for all children, nor will all skills be easily
taught by a single method. Children with ASD are unigue individuals and therefore
our teaching approaches and intervention must be individualized to meet their needs.
Similarly, early childhood personnel must work with the family and design a program
that both addresses their concerns and priorities as well as fitting with their family
life. Effective intervention includes helping the family to learn approaches and
technigues that they can use with their young child that can promote his/ her
development.

Reinforcement

As with any teaching strategy, reinforcement is the key factor in success. Early
childhood personnel need to take time to address what motivates children with ASD
perhaps more than any other children. Parents know best about what their child likes
and what motivates him/ her. Early childhood personnel who work with the parents to
identify reinforcements and rewards before implementing a teaching strategy will be
more successful in effectively engaging the young child with ASD.

Applied Behavior Analysis

Teaching strategies from the field of Applied Behavior Analysis (ABA) are most often
utilized for teaching children with ASD. These approaches have proven effective for a
variety of children with ASD and range from teacher directed learning strategies, such
as direct instruction/ discrete trial teaching strategies to child initiated learning
strategies which are classified as naturalistic teaching. The teaching of functional
routines within environmental structure is another area of ABA.

The next chart illustrates the connection of the applied behavior approaches.

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Applied Behavior Analysis: ABA

Direct Instruction/
Discrete Trial Teaching
Strategies

Naturalistic Teaching Strategies

Functional Routines/
Environmental Structure

Teacher Directed Learning Child Initiated Learning

/

IVbssed

\

Distributed

/

PRT

r

Incidental

\

Peer

(Pivotal

Teaching

IVfediated

1:1

Small

Response

Learning

Group

Training)

Activity

Based

Intervention

Learning to Respond to
Environmental Cues

Functional Structured

Routines Teaching

Direct Instruction/Teacher Directed Learning

Direct instruction refers to teaching strategies, which are adult directed, and one to
one. They are highly structured and systematic and generally reguire repetitive
practice with reinforcement given for correct responses.

Discrete Trial Training

Discrete trial is a 3 part teaching strategy that utilizes a behavioral seguence to
maximize learning in students with ASD and other similar developmental disabilities.
Discrete trials let the student know immediately if he/ she has responded correctly or
incorrectly. Discrete trials also help the teacher maintain consistency in all phases of
the learning process and make assessment of progress earlier. Discrete trials have
been proven to be effective when teaching new skills to children with autism.

The discrete trial consists of the following three distinct parts:

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♦ The instruction (also called the Sd or discriminative stimulus), should be short
and easy to understand such as "do puzzle," "hands down," etc.

♦ The second part of the discrete trial is the child's response or action in
response to the Sd.

♦ The third part is the consequence following the response or the reinforcing
stimulus. The reinforcing stimulus may be food, privileges, praise, affection,
attention, tickling, preferred activities, etc.

The strengths of discrete trial or direct instruction are that it often produces rapid,
efficient learning and that it breaks down tasks into small, teachable steps. Some
areas of concern include poor generalization and the need for one to one instruction.
It is also a technique that requires some specialized training.

Example: Mary is a 2-1/ 2 year old child with a diagnosis of ASD. She moves around
constantly maldng it difficult to get her attention. The teacher leads Mary to her
carpet square and says, "Sit down." Mary starts to leave the area; the teacher
redirects her back to the carpet square, shows Mary her favorite ball and says, "Sit
down." Mary sits on her carpet square and the teacher gives her the ball and says
"Good sitting." The discrete trial had the following three parts:

"SIT DOWN" -> Mary sits -» "GOOD SITTING", Mary given ball as re inforcer

Naturalistic Teaching/ Child Initiated Strategies

These strategies that are child initiated include pivotal response training, incidental
teaching/ activity based intervention, and peer-mediated learning.

Pivotal Response Training

Pivotal response training was developed by Drs. Robert and Lynn Koegel at the
University of California- Santa Barbara in the 1980s. PRT was developed in an effort to
increase generalization of skills in children with ASD and to find target behaviors that
would produce simultaneous changes in many other behaviors. Teaching occurs in
natural environments with the following outcomes/ goals: to teach responsiveness in
social and learning opportunities; to increase independence; and to allow the child
with ASD to participate in inclusive settings.

Pivotal behaviors are those that seem important in a wide area of functioning.

Positive changes in pivotal behaviors should result in positive effects on many other
behaviors.

Such behaviors include responding to multiple cues, (the "yellow car", not just a
single cue "car.") A child who can respond to multiple cues is able to discriminate
and attend more effectively to the environment. Another pivotal response behavior is

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self-initiation. By learning to ask questions spontaneously, rather than just respond
to them, a child is able to initiate with a variety of adults and peers. Teaching a child
to use a pivotal word, such as " Look, " to actively engage others and gain knowledge,
rather than trying to teach labels for everything is an example of PRT. The main
differences between direct instruction/ discrete trial are a) teaching is by child
choice, b) behaviors have natural consequences, and c) the child is motivated by the
teaching object, not an unrelated reinforcer.

The differences between discrete trial and pivotal response are illustrated in the
following example:

Obj ective: Naming obj ects/ pictures

Direct Instruction: The teacher presents picture of bus; asks the child: "What is it?'
The child responds: "Bus."

The teacher response: "Great!" and hands the child a top as a
reinforcer.

Obj ective: Naming obj ects / pictures

Pivotal Response: The teacher brings item of interest to child's eye level and says:

"Top."

The child imitates and says: "Top. "

The teacher says: "Great!" and hands the child a top as a
reinforcer

The benefits of PRT are that it can be provided in most inclusive settings, it produces
generalized improvements in other areas, and it was specifically developed for
children with ASD. An area of concern is that the teaching strategies may not be well
specified.

Incidental Teaching

Incidental teaching has been explored by Dr. Gail McGee at Emory University in
Georgia. Incidental teaching is a naturalistic strategy in that a child' s interests are
assessed and instruction is child directed and child focused. The child is provided the
opportunity to explore whatever interests him/ her in the classroom or environment.
The teacher uses the child's expressed interests as an opportunity to determine what
skills should be taught. The teacher must capitalize on the opportunity and turn it
into a teachable moment. The focus for teaching is the development of social and
communication skills. Skills are taught within ongoing activities.

The strengths of incidental teaching are its usefulness in natural settings, the
emphasis on maintenance and generalization of skills, and its ability to utilize
typically developing peers. Some of the concerns are that the child must have some
necessary pre-requisite skills and should have goal directed behavior. It also requires
an observant teacher who is able to detect and respond to even subtle cues of
interest given by the child with ASD.

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Example: During free play, the teacher notices J ohnny playing with a pretend car
wash set; as he pushes the car inside the car wash, the teacher models the word "in."
J ohnny echoes the word, the teacher responds with "Yes, car in. "

Activity Based Instruction

Activity based instruction refers to instruction that is embedded within an activity.
There is shared teacher/ child control and instruction occurs within natural
environments. Activities are typical and developmentally appropriate.

The strengths of activity based instruction are that generalization is promoted and
that discrete trials of instruction may be embedded into typical activities. Some
areas of concern are that activities may not be motivating for the child or that the
child may not be focused on the activity. This strategy also reguires some pre-
reguisite skill on the part of the child and by its nature may provide fewer learning
opportunities.

Example: After finger painting, Maria follows the other children to the sink to wash
her hands. The teacher points to the steps of hand washing, which are posted
through pictures by the sink. This is a natural activity in which the instruction is
embedded.

Peer Mediation/ Coaching

Peer mediation refers to the "coaching" of typically developing peers to help increase
the social, language, or play skills of children with ASD. The use of peers is important
as children with ASD typically tend to communicate more with adults than with their
own peer group. Adults are able to predict and adapt their communication style to
the child with ASD, whereas peers may reguire some coaching on how to respond to,
initiate, and maintain communication with children with ASD. As peers learn these
adaptations, adult contact decreases and the peers are able to provide more natural
social examples to the child with ASD. Peer mediation generally consists of a
combination of 1) coaching the peer and 2) shadowing the child with ASD.

The adult focuses on teaching the peer 1) how to understand the communication
attempts of the child with ASD, 2) how to initiate and respond to the child with ASD,
and 3) how to maintain an interaction with the child with ASD. The peer may practice
where to stand, how to give or take an item, how to show something to the child or
how to tap the child's arm to gain attention. Peers are taught how to persist if the
child with ASD does not respond, how to wait for a response, and how to ignore
certain behaviors.

The adult facilitates the interaction by modeling and prompting the child with ASD. It
is important to distinguish for the child with ASD whether the adult is interacting with
him/ her or modeling for him/ her. If the adult is face to face with the child with ASD,

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the child may respond to the adult rather than to the peer. However, if the adult
stands behind the child with ASD and then prompts the peer to say something, the
child with ASD is more likely to understand he/ she is supposed to direct the message
to the peer. In addition, visual and non-verbal cues can be given to the peer from the
adult if needed.

The use of peer mediation/ coaching has much obvious strength. It maximizes and
encourages inclusion in all settings, and is a naturalistic strategy for teaching social
and communication skills. Some concerns may be the coaching of the typical peer
and providing sufficient practice for the child with ASD.

Example: The developmental specialist selects the sister (Carol) of a child with ASD
(Billy). She models how to complete a picture exchange with Carol. After practicing
with Carol, the developmental specialist coaches her to receive a picture of a cookie
from Billy with some assistance. She encourages Carol to give Billy the cookie. After
several tries, the developmental specialist is able to move away from the children as
the exchanges continue.

Functional Routines/Environmental Structure

Functional Routines

Functional routines are those routines that are meaningful to the child and family and
occur naturally in a home or school setting. Instruction in these routines must be
systematic and planned to be successful. Early childhood personnel have a great
opportunity to support families in teaching these functional routines within the home
environment.

The steps in teaching functional routines include the following:

1. Identifying skill, routines/ activities, settings - The same skill may be practiced
in several different activities and in many settings. Examples of functional
routines that may be targeted for teaching include dressing, getting ready for
bed, mealtimes, bathing, etc.

2. Creating a teaching plan - This includes developing strategies/ obj ectives,
where activity will be taught, what materials will be needed, steps involved,
prompts, teacher's response to both correct and incorrect performance.

3. Developing a data system - This will provide ongoing assessment of the child' s
progress and may include the percent correct, number of steps independently
completed, prompt level to be successful.

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4. Teaching within natural routines - Identify who will teach, i.e., parents, early
childhood providers, therapists, etc. Discuss how to prompt and how to
reinforce and talk specifically about how the skill will be taught, perhaps
through role play.

a. Use a variety of behavioral teaching technigues to teach the child, such
as more physical handling of the child, less verbal prompting, shaping
approximations, errorless learning, and freguent use of rewards early
on.

b. Incidental technigues are also used, such as observing natural learning
opportunities and creating situations where the child may be motivated
to initiate and respond.

c. Structured teaching technigues may also be useful, such as the
utilization of visual schedules of routines, visual cues for completion of
tasks, and teaching the child when an activity is finished.

d. Developmentally appropriate teaching is also important in teaching
functional routines. Skills taught should be developmentally
appropriate; language used should be at a level understood by the child
and the activity should be fun for the child.

5. Monitoring Progress - Data collected should be reviewed regularly to determine
if change is necessary for the child.

6. Expanding Skills - Skills should be expanded to encourage more independence,
to practice in another environment or to learn a more complex skill.

Structured Teaching

Developed by the Division TEACCH in the Department of Psychiatry of the University
of North Carolina School of Medicine, structured teaching is generally considered to
be a strategy that attempts to understand the child' s unigue learning challenges and
to develop environmental supports to compensate. It is individualized and begins
with a thorough understanding of the child and his/ her strengths and needs.

Generally, structured teaching refers to five broad categories of strategies. These
include:

♦ Physical structure: This includes physical classroom structure and where
materials, furniture etc. are placed.

♦ Daily Schedule: This refers to the child's individual schedule, which tells
him/ her what activities will occur, and in what order.

♦ Individual Work Systems: This is the child's systematic way to receive and
understand information. The work system allows the child to work
independently by visually answering the guestions: what work, how much
work, when it is finished and what happens next.

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♦ Visual Structure : This allows the child to use visual methods to complete tasks
by providing visual instruction, visual organization and visual clarity.

PECS - Picture Exchange Communication System

The Picture Exchange Communication System (PECS), authored by Andy Bondy and
Lori Frost, was originally developed for use with preschool children with autism and
other pervasive developmental disorders, as well as for other children with
communication disorder who have no functional verbal speech. It came out of the
need for an alternative to motor and/ or vocal imitated speech. The PECS approach
involves a child giving a picture of a desired object to a communicative partner in
exchange for that item. By doing this action, the child initiates a social and
communicative exchange with a concrete, reinforcing outcome. Some of the many
benefits of this approach include: 1) it can be used with very young and/ or children
with significant cognitive delay, 2) it emphasizes spontaneous communication with
others, 3) it is taught using the visual modality, which is usually a strength for
children with ASD, and 4) it is easily generalized across settings and people.

Although some people believe that PECS reduces the likelihood of a child using verbal
speech, in fact, the opposite is true according to research findings. When a child
begins to communicate by using a picture exchange system and the verbal label is
paired with the desired item, the child will, over time, usually decrease dependence
on the picture and express himself/ herself verbally with the label of the desired item.

Example: Suzi gains access to obj ects by grabbing them. The therapist shows Suzi a
picture of her favorite object, which is a videocassette case. The therapist puts the
picture cue in front of the videocassette case. When Suzi reaches for the case, the
therapist guides her hand towards the cue and Suzi picks up the picture cue. The
therapist places her open hand next to the cue and assists Suzi to release the picture
cue into her open hand. Suzi is immediately given the videocassette case.

Social Stories

Social stories were initially designed by Carol Gray. Social stories are meant to
describe any situation, through pictures and/ or words, that may reguire the child to
pick up on relevant social cues and/ or give correct responses. They can be targeted
for specific social skills and can often help children with ASD adapt to changes in
routine. Social stories are designed to describe a situation (who, what, where, when)
with a description of desired behavior and/ or acceptable coping strategies that can
be used by the child. It is important to develop a social story at an appropriate
developmental level for every child (i.e., a child with ASD who is reading words may
not need pictures, etc.) They are written in present tense and should include 2 to 5
descriptive and/ or perspective sentences for every one directive statement. The
strength of this approach for teaching children with ASD is that it is geared to address
abstract or difficult social situations and gives the information (i.e., visual and/ or
verbal) in a manner that the child can understand. Some limitations of this approach

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are that it can be time-consuming and that it is often used for behavior management
instead of its intended purpose.

Example:

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Summary

Autism spectrum disorder affects as many as 1 in 500 persons throughout the United
States. Providing effective and intensive early intervention services for young
children with ASD is a daunting task. There are multiple interventions that have been
shown to make dramatic improvements in the lives of children with ASD. The field of
applied behavior analysis has given us many of these strategies, such as discrete trial
training, pivotal response teaching, and using functional routines within structured
teaching. In addition, social stories and the picture exchange communication system
have provided children with ASD the opportunity to receive information and
communicate with others in a way that makes sense to them. Reinforcement is
critical in implementing any of these strategies and should be individualized.

Providing supports such as visual schedules and environmental structure are also
important in providing a comprehensive program for each child.

Intervention with young children with ASD involves an understanding of how their
sensory systems impact their ability to relate to the environment. An effective
program takes into account how sensory issues and communication skills account for
the types of behavior that we see in young children with ASD.

Early intervention providers and educators need increased support through training,
technical assistance and consultation at a state and local level to effectively address
these difficult issues. Issues related to autism spectrum disorder reguire intensive
intervention and coordination among all people involved in a young child's life. By
working together, we can effectively shape New Mexico's future in how we serve
children with ASD and their families.

It has been demonstrated through scientific research that children with ASD will not
gain skills without this degree of intervention (Sheinkopf & Siegel, 1998). New Mexico
early intervention providers and local education agency - preschool program will be
challenged to meet the intensive engagement hours that have been demonstrated to
be effective with children with autism spectrum disorder. Communities will have to
work together across disciplines and agencies in order to meet the individualized
needs of children and their families. Plans therefore will need to address health care,
behavioral health, family support and training, as well as the family's need for
respite.

In addition. New Mexico continues to be challenged to ensure an adeguate number of
gualified early childhood personnel trained specifically in teaching children with ASD.
New Mexico is moving ahead with training for both early intervention and early
childhood education personnel.

It is important that New Mexico addresses the growth and cost of providing
appropriate services to children with ASD if we are to avoid the pitfalls that other

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states have experienced, such as costly due process litigation and contentious
relationships.

The growth of ASD nationally has increased to an alarming rate of 172% compared
with just 16%for all other disabilities. In addition, the projected cost of ASD to the
US economy will be from 200 to 400 billion dollars, compared with 90 billion at the
present time. The children and families of New Mexico deserve access to high
guality, intensive interventions for ASD. The starting point has to be with the early
intervention and early childhood programs throughout New Mexico.

Autism Growth Comparison Chart

(Source: Autism Society of America)

300 %

200%

100%

4- 273 % - Autism

(California) 3

4-172 % - Autism
(U.S.) 2

4- 16 % - All Disabilities (U.S.) 2

4- 13 % - U.S. Population 1
1990 1992 1994 1996 1998 2000

1 U.S. Census Bureau 1999-2000 , 2 U.S. Dept, of Educ. Report to Congress 1999 3 Calif. Dept, of Devel. Svcs. Report 1999

Annual Cost of Autism on U.S. Economy

Current Annual Cost: $90 Billion
Estimated Annual Cost in 10 Years: $200-$400 Billion

(Source: Autism Society of America)

1 Based on London School of Economics Study 2001 and U.S. autism prevalence rate of 1 .5 million

2 ASA analysis of future cost growth based on 10-17% annual increase in autism prevalence

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Appendix A

The Modified Checklist for Autism in Toddlers (MCHAT): An Initial Study Investigating
the Early Detection of Autism and Pervasive Developmental Disorders
Diana L. Robins, Deborah Fein, IVhrianne L. Barton, and J ames A. Green

MCHAT

Please fill out the following about how your child usually is. Please try to answer
every guestion. If the behavior is rare (e.g., you've seen it once or twice), please
answer as if the child does not do it.

1. Does your child enj oy being swung, bounced on your knee, etc. ?

2. Does your child take an interest in other children?

3. Does your child like climbing on things, such as up stairs?

4. Does your child enj oy playing peek-a-boo/ hide-and-seek?

5. Does your child ever pretend, for example, to talk on the phone or take
care of dolls, or pretend other things?

6. Does your child ever use his/ her index finger to point, to ask something?

7. Does your child ever use his/ her index finger to point, to indicate interest
in something?

8. Can your child play properly with small toys (e.g., cars or bricks) without
just mouthing, fiddling, or dropping them?

9. Does your child ever bring obj ects over to you (parent) to show you
something?

10. Does your child look you in the eye for more than a second or two?

11. Does your child ever seem oversensitive to noise? (e.g., plugging ears)

12. Does your child smile in response to your face or your smile?

13. Does your child imitate you? (e.g., if you make a face, will your child
imitate it?)

14. Does your child respond to his/ her name when you call?

15. If you point at a toy across the room, does your child look at it?

16. Does your child walk?

17. Does your child look at things you are looking at?

18. Does your child make unusual finger movements near his / her face?

19. Does your child try to attract your attention to his/ her own activity?

20. Have you ever wondered if your child is deaf?

21. Does your child understand what people say?

22. Does your child sometimes stare at nothing or wander with no
purpose?

23. Does your child look at your face to check your reaction when faced
with something unfamiliar?

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Yes

No

Contact the authors for more information on receiving copies of the English or Spanish M- CHAT.

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Appendix B

Diagnostic Criteria for Autism Spectrum Disorders
Autistic Disorder (299.0)

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and

one each from (2) and (3):

1. Qualitative impairment in social interaction, as manifested by at least two of

the following:

a) Marked impairment in the use of multiple, nonverbal behavior, such as eye
to eye gaze, facial expression, body postures, and gestures to regulate
social interaction

b) Failure to develop peer relationships appropriate to developmental level

c) A lack of spontaneous seeking to share enjoyment, interests or
achievements with other people (e.g., by a lack of showing, bringing, or
pointing out objects of interest)

d) Lack of social or emotional reciprocity

2. Qualitative impairment in communication as manifested by at least one of the

following:

a) Delay in, or total lack of, development of spoken language (not
accompanied by an attempt to compensate through alternative modes If
communication, such as gesture or mime)

b) In individuals with adeguate speech, marked impairment in the ability to
initiate or sustain a conversation with others

c) Stereotyped and repetitive use of language or idiosyncratic language

d) Lack of varied, spontaneous make believe play or social and imitative play
appropriate to developmental level

3. Restricted repetitive and stereotyped patterns of behavior, interests, and

activities, as manifested by at least one of the following:

a) Encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus

b) Apparently inflexible adherence to specific, nonfunctional routines or
rituals

c) Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping,
twisting, or complex whole body movements)

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d) Persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with
onset prior to age 3 years: (1) social interaction, (2) language as used in
social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's disorder or childhood
disintegrative disorder

Rett's Disorder (299.80)

A. All of the following:

1) Apparently normal prenatal and perinatal development

2) Apparently normal psychomotor development through the first 5 months
after birth

3) Normal head circumference at birth

B. Onset of all of the following after the period of normal development:

1) Deceleration of head growth between ages 5 and 48 months

2) Loss of previously acguired purposeful hand skills between 5 and 30
months with the subseguent development of stereotyped hand
movements (e.g., hand wringing or hand washing)

3) Loss of social engagement early in the course (although often social
interaction develops later)

4) Appearance of poorly coordinated gait or trunk movements

5) Severely impaired expressive and receptive language development with
severe psychomotor retardation

Childhood Disintegrative Disorder (299.10)

A. 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.

B. Clinically significant loss of previously acguired skills before age 10 years in at
least two of the following areas:

1) Expressive or receptive language

2) Social skills or adaptive behavior

3) Bowel or bladder control

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4) Play

5) Motor Skills

C. Abnormalities of functioning in at least two of the following area:

1) Qualitative impairment in social interaction (e.g. ; impairment in
nonverbal behaviors, failure to develop peer relationships, lack of social
or emotional reciprocity.

2) Qualitative impairment in communication (e.g., delay or lack of spoken
language, inability to initiate or sustain conversation, stereotyped and
repetitive

3) Restricted, repetitive and stereotyped patterns of behavior, interest,
and activities including motor stereotypes and mannerisms.

4) The disturbance is not better accounted for by another specific
Pervasive Developmental Disorder or by Schizophrenia.

Asperger's Disorder (299.80)

A. Qualitative impairment in social interaction, as manifested by at least two of the
following:

1) Marked impairment in the use of multiple nonverbal behaviors, such as
eye to eye gaze, facial expression, body posture, and gestures to
regulate social interaction.

2) Failure to develop peer relationships appropriate to developmental level

3) Lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people (e.g., by a lack of showing, bringing or
pointing out objects of interest to other people)

4) Lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behaviors, 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 in either intensity or
focus

2) Apparently inflexible adherence to specific, nonfunctional routines or
rituals.

3) Stereotyped and repetitive motor mannerisms (e.g., hand or finger
flapping or twisting, or complex whole body movements)

4) Persistent preoccupation with parts of objects

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C. The disturbance causes clinically significant impairment in social occupational or
other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used
by age 2 years, communicative phrases used by age 3 years. )

E. There is no clinically significant delay in cognitive development or in the
development of age appropriate self help skills, adaptive behavior (other than in
social interaction,) and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or
Schizophrenia.

Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical
Autism) (299.80)

This category should be used when there is a severe and pervasive impairment in the
development of reciprocal social interaction associated with impairments in either
verbal or nonverbal communication skills or with the presence of stereotyped
behavior, interests, and activities, but the criteria are not met for a specific
Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or
Avoidant Personality Disorder. For example, this category includes "atypical autism"
presentations that do not meet the criteria for Autistic Disorder because of late age
of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

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Appendix C

Basic Skills Needed by Young Children with Autism Spectrum Disorder
(ASD)

Behavioral Control

• Command Compliance

• Task Compliance

Attention Skills

• Ability to attend to and makes sense of:

■ Individual Stimuli

■ Relevant Stimuli

■ Familiar adults and children

■ Other adults and children

■ Speech

■ Gestures

• Ability to shift attention from one person/ item/ activity/ input to another

• Ability to attend to more than one stimulus at a time

• Demonstration of j oint attention to person and obj ect

Imitation Skills

• Motor

• Verbal

• Social

Language Skills

• Understands:

■ The function and power of communication

■ A few familiar verbal commands

■ Representational meaning

■ Visual system

■ More verbal or visual commands

• Functions:

■ Reguest

■ Protest

■ Call for attention

■ Make choices

■ Ask for help

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■ Label

■ Greet spontaneously

■ Comment

Social Skills

• Awareness of others

• Physical proximity

• Turn-taking

• Models behavior of others

• Ongoing back and forth interactions

• Initiation of social interaction

Play Skills

• Awareness of materials and activities

• Appropriate play with toys

• Expansion of areas of interest

• Participation in imaginative/ symbolic play

• Participation in interactive/ reciprocal play

• What objects in the environment does he/ she gravitate toward?

• Toy use - Appropriate or idiosyncratic

• Non-toy use - Appropriate or idiosyncratic

• How long does he/ she stay with an obj ect or activity in play?

• What does he/ she do with a new toy?

• Does his/ her play indicate potential reinforcers?

Attention Skills Questions

• What is the child's range of attention span?

• What items/ activities does he/ she attend to longest?

• What items/ activities does he/ she attend to briefly?

• Does he/ she pay attention to talking? To verbal directions? To gestures? To
modeling of an action?

Communication Questions

• Does he/ she use single words, phrases, sentences?

• Does he/ she seem to understand what is said?

• Does he/ she respond to guestions that are yes/ no?

• Does he/ she respond to why, what, where, when, or who?

• Does he/ she respond to open-ended guestions?

• Does he/ she reguest, protest, comment, call attention, ask for help?

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Organization/ Orientation in Space

• What does he/ she do with his/ her body?

• How long does he/ she stay in one position?

• How long does he/ she stay still?

Organization in the Environment

• Does he/ she do better in some places than others?

• Does he/ she do better in some circumstances than others?

Modified from training information, Project SET, 2003

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Appendix D

Sample Educational Outcomes/Goals for Young Children with ASD

Social Skills

Proximity - Tony will accept proximity of others within 2-5 feet, without
escape during home and school activities with support.

Non-verbal turn-taking - With an 1) adult, 2) peer, Andrew will participate in 3
turn taking exchanges during motivating activities, 3 out of 4 opportunities
over 2 weeks.

Responding to social initiation - With an 1) adult, 2) peer, J ohn will
acknowledge a social initiation (i.e., wave, "Hi", "bye") with eye gaze, wave,
and/ or verbalization, 3 out of 4 opportunities over 2 weeks.

Functional Communication
Re guesting

Mary will point to reguest a desired item in the environment, 3 out of 4
opportunities over a two-week period.

Juan will reguest using a single picture exchange for desired items, 3 out of 4
opportunities over a two-week period.

Mchele will use a functional sign (i.e. more, finished) to reguest continuation
or completion of an activity, 3 out of 4 opportunities over a two week period.
Lonnie will verbalize to reguest a desired item or activity, 3 out of 4
opportunities over a two-week period.

Expressive Language

Mary will verbally reguest or reject items or activities in the environment 3 out
of 4 opportunities over a 2-week period.

Claire will reguest using a PECS constructed sentence (i.e., "I want ") for

desired items 3 out of 4 opportunities over a two-week period.

Receptive Language

Mary will follow familiar and unfamiliar one step directions, 3 out of 4
opportunities, over a two-week period.

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Tom will answer simple questions (what, where) from staff and/ or peers, 3 out
of 4 opportunities, over a two- week period

Play Skills

Mchael will participate in functional cause and effect play activities during
free time, 3 out of 4 opportunities over a two- week period.

John will participate in object and/or action imitation (i.e. trains, songs) with
1 adult, 2 peers, involving sequencing of a routine, 3 out of 4 opportunities
over a two week period.

Evan will participate in facilitated, symbolic play activities during free time, 3
out of 4 opportunities over a two- week period.

Pre-Academics

J oan will transition, during home and school activities, with visual supports,
transition objects and routines, 3 out of 4 opportunities over a two week
period.

Tony will sequence a three- step activity with visual supports, 3 out of 4
opportunities over a two-week period.

J ohnny will independently use an individual visual schedule to make transitions
throughout the day, 3 out of 4 opportunities over a two-week period.

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Appendix E

Case Studies

Jesus - 2 years, 8 months

Jesus has been in services for the past five months, receiving a one hour home visit a
week by a developmental specialist, an hour of speech therapy in the home per week
and a half hour visit, once a week by an occupational therapist. So far, there has
been little to no progress noted by the team.

Jesus can be characterized as primarily self-directed, with freguent avoidance of
social situations, task demands, or communication with others. He spends much of
his time running back and forth from the couch to the TV while watching his favorite
video, Bob the Builder. In addition, his parents report that he spends much of his
time seeking out activities such as swinging, jumping from tall objects, and "crashing
into things. "

Jesus's communication is characterized primarily by whining or crying when he does
not receive a desired item, pushing people out of his space when they attempt to
interrupt his gross motor play, and having freguent meltdowns around transitions. He
has no functional verbal language or gestures and does not appear to hear when you
are talking to him. Sometimes when Jesus gets upset, he will bite his wrist. His
parents state that this generally occurs around transitions, when he is asked to follow
a direction, or over stimulating situations.

His parents continue to ask the providers how to deal with his behaviors, and feel that
Jesus is generally just being stubborn. They state that "he really understands what
they want; he just doesn't want to do it. You know, he's just being a typical two-
year old." They have gone along with early intervention services, mainly because of
pressure from a family friend. They feel that he may have some slight delays, but the
majority of his problem is just behavior. They feel that as he matures, he will grow
out of some of his difficult behaviors and his language and social interaction will
improve.

A team meeting is scheduled with his parents to discuss goal planning, the lack of
progress, and the need for further evaluation to prepare for his transition to the three
and four year old program.

Suggestions for talking with J esus' family:

• Discuss specific behaviors to help the family see that J esus is showing
differences in his development as well as delays

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• Discuss J esus' s behaviors in terms of his learning style being different than
other children

• Allow the family to process information and suggest further evaluation by a
team gualified to look at J esus' s behaviors in terms of ASD

• Do NOT say that you think Jesus has ASD

• Discuss lack of progress in terms of how it forces the team to look at other
possible interventions, evaluations for other possible diagnoses

• Acknowledge that some of J esus' s behaviors may be related to stubbornness,
but that there may also be differences in terms of how he processes
information

Kaitlyn - 3 years, 2 months

Kaitlyn has received services for 3 months. She receives two home visits a month
from a developmental specialist, two visits a week for a half an hour from an SLP at a
center based program, and twice monthly home visits from an OT. So far, there has
been little to no progress reported by the team.

Kaitlyn can be characterized as generally self-directed, although she has
demonstrated an emerging understanding of contingency (i.e., first this, then that).
She spends much of her time engaged in solitary, stereotypic play with Pooh figures.
Her parents report that Kaitlyn has times where she will seek out sensory input from
others by pushing her head into their midsection. At other times, they report that
Kaitlyn would spend hours swinging outside if allowed to do so. They state that some
days she is unreachable when engaging in these activities, whereas other days, she
can come out of them rather easily.

Her communication is primarily verbal single words or short phrases that are usually
functional, to make a reguest. She will respond socially in situations that make sense
to her, such as saying "Hi" and "Bye" to people. Her mother reports that it seems
like Kaitlyn communicates better after having periods of gross motor play, but that
sometimes, she is just "stubborn." Her parents are concerned about some of her
behaviors, such as grabbing items from others, pushing away her 4 year old brother
when he gets too close to her, and a high-pitched sgueal that surfaces when she is
told "No."

A team meeting is scheduled to discuss her lack of progress, goal planning, and the
possibility of bringing her into a preschool classroom setting for several days a week.
As a part of this possible transition, the El team is meeting with the 3 and 4 year old
staff to discuss strategies. What do you suggest?

Suggestions for talking with Kaitlyn' s family:

• Discuss pros and cons of bringing her into a preschool classroom setting

• Discuss lack of progress in terms of differences that you are seeing in specific
behaviors, not just general feelings by the staff

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• Discuss her sensory and communication difficulties in terms of her different
learning style and ways that she processes information

• Discuss the need for further evaluation in order to help her more effectively

• Do NOT say that she has ASD

Daniel - 4 years, 4 months

Daniel has been receiving services from the public school system for the past year
after being diagnosed with ASD at age 3 years, 4 months. During this time, the school
staff has noted many improvements in Daniel's communication, social interactions
and transitioning ability.

Daniel currently goes to a three day preschool for four hours a day. At preschool, he
receives speech therapy and occupational therapy services in the classroom for an
hour a week. In addition, he receives outpatient speech and occupational therapy
through private insurance, twice weekly for an hour each in co-treating sessions.

Daniel primarily uses three and four word phrases and sentences to express his wants
and needs. He does little commenting or protesting verbally, and usually resorts to
non-verbal communication when stressed. Because he is verbal, the staff has been
reluctant to use PECS, feeling that it might prevent him from progressing in terms of
his verbal communication. Daniel can follow familiar and unfamiliar one step
directions and familiar two step directions with minimal to moderate visual cueing.

The school staff has noticed that Daniel has started to engage in escape behaviors
during circle time and snack time. They are concerned because he is not able to
verbalize his problems, and instead acts out by hitting and pinching other children
and staff. When redirected to another environment, he calms guickly, but refuses to
reenter the activity.

The school staff states that they try to reason with Daniel during these times, but he
just "doesn't seem to hear us." A team meeting is planned with the outpatient SLP
and OT and the school staff and therapists. What do you think should be the focus of
the meeting?

Suggestions for talking with Daniel's family:

• Discuss Daniel's strengths and how that should drive intervention

• Discuss Daniel's needs in terms of a different learning style

• Discuss the need for further evaluation

• Do NOT say that Daniel has ASD

• Discuss that just because Daniel is verbal, does not mean that he always is able
to process verbal information in a meaningful way

• Discuss alternative strategies (i.e., visual supports) in the classroom to help
him process information more effectively

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Frequently Asked Questions

What causes autism?

At this time, there is no known cause for autism. Most experts believe that there is a
genetic basis for the disorder.

Is there a 'cure' for autism?

There is no cure for autism, however, with intensive intervention, children with
autism are much more likely to have success later in life. As children grow and
develop, so does their autism. As adults, they have often learned coping skills to help
address their difficulties associated with this disorder.

How young can a child be diagnosed with autism spectrum disorder?

Although previously it was believed that children under three years of age could not
be diagnosed, we now have the ability to accurately diagnose children under the age
of two due to a better understanding of behavioral characteristics associated with
ASD.

My child is two and a half and doesn't speak, will he ever talk?

Although there are no definitive statistics regarding this issue, most children with ASD
develop some level of meaningful verbal communication during their lifetime.

What therapy services will my child benefit from?

An individualized plan will be developed that will detail the services and supports that
are unigue for your child and family. Speech therapy, occupational therapy, physical
therapy and sensory integration therapy and developmental instruction are generally
believed to be appropriate services for children with ASD. Hippotherapy has been
effective for some children with ASD, as well as some specific diet therapies. Each
child with ASD is different, so not all therapies will be effective for every child.

How much therapy does my child need?

The national recommendation is for 25 hours of 'engagement', which is the time your
child maintains attention to an activity or a person that promotes learning. You and
your IFSP/ IEP will decide on the when and where your child will receive the
engagement they need. This will likely vary from child to child depending on their

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age, their autistic symptoms, how they are progressing, their tolerance for the
intervention, as well as on your family situation.

If my child uses pictures to communicate, won't this prevent verbal
communication?

In fact, research from years of picture communication systems, such as PECS, has
proven just the opposite. Pictures often serve as a bridge for later verbal
communication. Attaching a verbal label to a picture often helps children with ASD
associate words with objects, leading later on to verbal communication. When a child
learns the words for meaningful objects, they often start to communicate more
verbally, because it is faster and easier than exchanging a picture to get their needs
met.

Which approach is the best for intervention with my child with ASD?

There is no one approach that is successful for every child with ASD. Generally
speaking, a combination of different approaches is usually most effective. Some
effective approaches for teaching children with ASD include PECS, TEACCH, discrete
trial training, pivotal responses training and structured teaching.

Does my child need to be in a group setting with other children, or should I just
have her just receive individual intervention / therapy until she gets older?

Although every child with ASD is unigue, there is often a benefit to having a child
engaged in a program with other children, even at a young age, for at least a portion
of her intervention. Individual intervention / therapy is important, and may often
help a child reach a level of functioning that enables her to benefit from a group or
preschool classroom setting.

Should my child with ASD be on medication to help with behavior?

Most behaviors are directly related to communication and/ or sensory difficulties. It is
usually more effective to address behavior through teaching strategies. Medication
may be helpful for some children in some cases, usually in addition to behavioral
therapies.

How long will a person with ASD live?

People with ASD have the same life expectancy as people without autism.

How do I discipline my child with ASD?

It is important to remember that children with ASD process information differently.
Often, using visual supports can help a child process information more effectively.

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Making sure that your child understands what is expected of him/ her is important in
considering discipline.

Should I treat my child like I would a typical child?

A child with ASD is not a typical child, so he/ she needs to be treated with his/ her
differences in mind. He/ she will need additional support and intervention in order to
learn, however, it is still important to have hopes and goals for your child.

How do I explain my child's disability to their sibling(s)?

Probably from a position of "This is how understands the world or his/ her

environment." Kids don't need to know diagnosis. Brothers and sisters like to know
how they can support their sibling's learning. Siblings like to be involved but shouldn't
be made to feel responsible.

How do I deal with my concerns that I am not doing enough for my child with ASD?

Parents can often feel overwhelmed after a diagnosis of ASD for their child. It is
important to remember that you are a parent FIRST, and a teacher AT TIMES.
Sometimes parents feel intimidated or inadeguate. It is important to remember that
you know your child best and others in your intervention team need to hear what you
have to say. Do not feel intimidated because you may not be trained in a specific
area of intervention. The support that you as a parent provide along with other
intervention / therapy is extremely important.

Where can I go for support?

Parents often find it helpful to talk to other parents of children with ASD. It can be
reassuring to know that other parents are feeling some of the same things you are or
are dealing with some of the same issues. The following organizations (listed in the
Resources section) can help connect you with other parents of children with ASD: the
Southwest Autism Network; Parents Reaching Out (PRO); and Parents of Behaviorally
Different Children (PBDC). You can contact with other parents over the phone,
through e-mail or in person.

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Bibliography

Intervention: Approaches & Methodology

American Psychiatric Association (1994). Diagnostic and statistical manual of mental
disorders (4 lh Edition), Washington, D.C.

Bondy, AS., & Frost, LA (1994). The picture exchange communication system. Focus
on Autistic Behavior (August), 9(3), 1-19.

Dawson, G., & Sterling, J. (1997). Early intervention in autism. In MJ. Guralnick
(Ed). The effectiveness of early intervention (pp 307-326)., Austin, TX: Pro-Ed.

Grandin, T., (1989). Emergence: Labeled Autistic, Arena Press, Novato, California

Grandin, T., (2000). IVfy Mnd is a Web Browser: How People with Autism Think.
Cerebrum, Winter Vol. 2, Number 1, pp. 14-22

Koegel, RL., Schreibman, L., Good, A., Cerniglia, L., Murphy, C. &Koegel., L (1989).
How to Teach Pivotal Behaviors to Children with Autism: A Training Manual. Santa
Barbara: University of California

Lord, C., Bristol., MM, & Schopler, E., (1993). Early Intervention for Children with
Autism and Related Developmental Disorders. In E Schopler., MVan Bourgondiem, M
Bristol (Eds). Preschool Issues in Autism. New York: Plenum Press.

Lovaas., O.I., (1996). The UCLA Young Autism Model of Service Delivery., In C.
Maurice., G. Green., & S. Luce (Eds.) Behavioral Intervention for Young Children
with Autism (pp. 241-248) Austin, TX Pro*Ed

McGee, G.G, Merrier, MJ., &Daly, T. (1999). An incidental approach to early
intervention for toddlers with autism. J ournal of the Association for Persons with
Severe Handicaps, 24(3), 199-208.

Mesibov, G.B., Schopler, E., &Hearsey, K.A. (1994). Structured teaching. In E.
Schopler & G.B. Mesibov (Eds.), Behavioral issues in autism (ppl95 - 207), New York,
NY: Plenum Press.

National Research Council (2001) Educating Children with Autism, National Academy
Press, Washington, D.C.

Prizant, B.M, & Rubin, E., (1999). Contemporary issues in interventions for autism
spectrum disorders: A commentary. J ournal of the Association for Persons with
Severe Handicaps, 24(3), 199-208.

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Sheinkopf, S., Siegel, B., (1996) Home Based Behavioral Treatment of Young Autistic
Children, Conference on Human Development, Pittsburg, PA.

Best Practice Guidelines

Best Practices for Designing & Delivering Effective Programs for Individuals with
Autism Spectrum Disorders, Recommendations of the Collaborative Work Group on
Autistic Spectrum Disorders, Sponsored by the California Departments of Education
and Developmental Services, July 1997

Critical Features of Early Intervention: Merging Best Practices., Indiana Resource
Center for Autism, 2003

Early Identification and Intervention for the Spectrum of Autism, Colorado Autism
Task Force, Colorado Department of Education, J une 2000.

Practice Parameters for the Assessment and Treatment of Children, Adolescents.,
and Adults with Autism and Other Pervasive Developmental Disorders., Journal of the
American Academy of Child and Adolescent Psychiatry., December, 1999

Proposed Recommendations of the Autism Society of America on the Reauthorization
of the Individuals with Disabilities Education Act (IDEA), Autism Society of America,
September, 2002

Service Guideline, Autistic Spectrum Disorder, Intervention Guidance for Service
Providers and Families of Young Children with Autistic Spectrum Disorders.,
Connecticut Birth to Three System, Department of Mental Retardation., Revised, July
2002.

Special Education Verification and Effective Instructional Practices for Children with
Autism Spectrum Disorders (ASD), Nebraska Special Education Advisory Council, May
2000 .

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Resources

The following is a list a New Mexico and national resources related to children with
ASD.

The Autism Research Institute (ARI)
4182 Adams Avenue
San Diego, CA 92116
Voice 619-281-7165
Fax 679-563-6840
www.autism.com/ ari

A hub of a worldwide network of parents
and professionals concerned with autism.
ARI conducts and fosters scientific
research designed to improve the
methods of diagnosing, treating, and
preventing autism.

Autism Society of America
7910 Woodmont Avenue, Suite 650
Bethesda, MD 20184-30315
1-800- 3- autism
www. autism- society, org

A leading source of information and
referral on autism. Today, over 20,000
members are connected through a
working network of over 200 chapters in
nearly every state.

Cure Autism Now

5455 Wilshire Blvd., Suite 715

Los Angeles, CA 90036

1-888-8AUTISM

www. cureautismnow. org/

An organization of parents, physicians,
and researchers, dedicated to promoting
and funding research with direct clinical
implications for treatment and a cure for
autism.

Early Childhood Evaluation Program
Center for Development & Usability
University of New Mexico
1-800-337-6076 (toll free)
505-272-2756 (Albuguergue)

Information on interdisciplinary team
evaluations for children eligible for early
intervention services.

Family Infant Toddler Program (FIT)
Long Term Services Division
New Mexico Department of Health
1-877-696-1472 (toll free)
www. health, state . nm. us/ ltsd/ fit

Information regarding early intervention
services for children birth to age three
and their families in New Mexico.

Families for Early Autism Treatment
(FEAT)

P.O.Box 255722

Sacramento, California, 95865-5722

(916) 843-1536

www.feat.org/

An organization of parents and
professionals, designed to help families
with children who have received the
diagnosis of Autism or Pervasive
Developmental Disorder (PDD NOS).

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LINC (Library and Information Network for
the Community)

University of New Mexico
1-800-827-6380 (toll free) or
505-272-0281 (Albuquerque)

Information on the largest collection of
autism books, videos and other resources
in New Mexico.

Lonq Term Services Division
Developmental Disabilities Proqrams
1-877-696-1492 (toll free)
www. health, state . nm. us/ ltsd

Information about the New Mexico
Developmental Disabilities Waiver,
respite and other services and supports
for families of children with autism.

New Mexico Autism Society
505-332-0306 (Albuquerque)
www. nmautismsociety. orq

State chapter of Autism Society of
America; provides a forum to meet other
family members. Group meets monthly
which includes an educational program.

OAR - Organization for Autism Research

2111 Wilson Boulevard, Suite 600

Arlington, VA 22201

(703) 351-5031

http: / / www. autismorg. com/

An organization formed and led by
parents and grandparents of children and
adults with autism.

Parents for Behaviorally Different
Children
1-800-273-7232
www.pbdconline. org

An organization formed by families of
children and adolescents with
neurobiological, emotional and behavioral
differences that provides advocacy,
support and training.

Parents Reaching Out
1-800-524-5176 (toll free) or
505-247-0192 (Albuquerque)
www. parentsreachingout. org

A statewide parent organization that
provides parent training, information and
referral, advocacy and parent-to-parent
support.

Public Education Department
Special Education Bureau
505-827-6541

www.ped.state.nm.us/ seo

Information regarding preschool and
kindergarten and elementary school
special education services.

Southwest Autism Network
1-800-270-1861 (toll free) or
505-272-1852 (Albuquerque)

To access Proj ect SET directly
(505) 272-3012 (Albuquerque)

Information about Autism Diagnostic
Clinic, resources, family support, and
training information. Project SET also
provides technical assistance to IFSP and
IEP teams for young children with ASD

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GLOSSARY

ASA (Autism Society of America) - organization dedicated to providing people with
autism and their families with information and support.

ASP (autism spectrum disorder) - spectrum of disorders involving a variety of
diagnoses and functioning levels that includes PDD/NOS, Asperger's Disorder, Autistic
Disorder, Rett's Disorder and Childhood Disintegrative Disorder.

Asperger's Disorder - disorder characterized by autistic behaviors, but differs in that
language development is generally seen as more typical with no clinically significant
delays.

Autistic Disorder ( sometimes referred to as early infantile autism, childhood
autism or Kanner's autism) - disorder characterized by markedly abnormal or
impaired development in social interaction and communication and a markedly
restricted repertoire of activity and interests manifested before age 3.

Childhood Disintegrative Disorder (also called Heller's syndrome, dementia
infantilis or disintegrative psychosis) - disorder characterized by marked regression
in multiple areas of functioning following a period of at least two years of apparently
normal development.

Child-initiated teaching - methods of teaching that involves a teacher reading a
child' s motivations and/ or cues in order to determine what to teach and how to
reinforce.

Discrete Trial Training - a teacher directed method of teaching that involves three
distinct components, an antecedent (such as an instruction, "do this"), a behavior
(whatever act the child performs immediately after the instruction), and a
conseguence (positive, negative reinforcement from the trainer).

Discriminative Stimulus (Sd) (also called the antecedent or instruction) -

information provided by the trainer to the student to perform a certain behavior.

Dysmorphology - a branch of clinical genetics concerned with the diagnosis and
interpretation of patterns of three types of structural deficits - malformation,
disruption, and deformation.

Engagement - is the time the child sustains attention to an activity or a person that
promotes learning.

Echolalia - repetition of speech. There are two forms of echolalia, immediate and
delayed. Immediate echolalia occurs when a child repeats the speech and often the

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tone and cadence of another person right after it occurs. Delayed echolalia occurs,
for example, when a child repeats speech heard from movies, TV, etc., long after it
has occurred.

Functional routines - routines that are meaningful to the child and family and occur
naturally within the home or school settings.

Generalization - transfer of skills taught in a particular environment to a wide
variety of other environments.

Hypersensitivity - heightened sensitivity to one of the senses beyond that which
would be exhibited by neurotypical persons.

Hyposensitivity - decreased sensitivity to one of the senses below that which would
be exhibited by neurotypical persons.

IEP - Individualized Education Plan - plan specifically designed for a child over age
three that addresses the individual learning styles and unigue developmental
challenges for that child in a variety of developmental areas.

IFSP - Individualized Family Service Plan - plan that involves the child under age
three, the family and the service providers to meet specific outcomes/ goals set forth
by the IFSP team to help improve the functioning levels of the child and the family in
a variety of developmental areas.

Incidental Teaching - a method of teaching that involves a teacher capitalizing on a
teachable moment, where a child is engaged with a desired object (i.e. when a child
is playing with Pooh on the slide, teaching the child the words to go with the actions,
"up", "down").

Inclusion - process of including students with disabilities with typically developing
peers in order to maximize learning potential.

Naturalistic teaching - methods of teaching that involve capitalizing on activities
that a child is motivated by and engaged in to teach a variety of skills and concepts.

PDD/NOS - disorder with severe and pervasive impairment of development of
reciprocal social interaction or verbal and non-verbal communication or stereotyped
behaviors, but the criteria are not met for a specific pervasive developmental
disorder, sometimes called atypical autism.

PECS (Picture Exchange Communication System) - a method of teaching
communication that involves an exchange of a picture in order to obtain a desired
object or activity.

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Peer Mediation/ Co aching - a method of "coaching" of typically developing peers to
help increase the social language or play skills of children with autism.

Pervasive Developmental Disorders - disorders characterized by severe and
pervasive impairments in reciprocal social interaction skills, communication skills, and
the presence of stereotyped behavior, interests and activities.

Pivotal Response Training - a child initiated method of teaching that involves
teaching a child a pivotal behavior that will have a wide effect on a variety of other
behaviors (i.e., teaching a child to say "Look" and point when an item is desired.)

Project SET - (Specialized Early Teaching for young children with autism) -

UNW SWAN project that is funded by the New Mexico State Department of Education
and the Department of Health Family Infant and Toddler Program to provide training,
technical assistance and consultation to providers and families for children with ASD
throughout New Mexico from birth to age 5.

Reinforcement - any object, activity or act that is designed to have a positive effect
on a child's behaviors.

Rett's Disorder - disorder marked by the development of multiple specific deficits
(i.e. stereotypic hand movements, such as hand wringing or washing) following a
period of normal functioning after birth to 5 months of age.

Sensory Integration - the integration of information perceived by the senses into
messages to the brain and body.

Social Stories - method of teaching that involves a description of a situation through
pictures and/ or words to help make abstract concepts more concrete.

Structured teaching - a strategy that attempts to understand the unigue learning
challenges of a child and to develop environmental supports to help compensate for
these challenges.

SWAN (Southwest Autism Network) - UNM programs housed at the Center for
Development and Disability that provides support and information for people with
autism and their families. Several programs comprise the Southwest Autism Network,
including Proj ect SET, Family and Community Education in ASD, Autism Diagnostic
Clinic and fee for service training and consultation.

Teacher-directed teaching - methods of teaching that involves the teacher deciding
what will be taught and what will be used for reinforcement (i.e., discrete trial
training. )

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