Autism Spectrum Disorder (ASD)

What is Autism Spectrum Disorder?

According to the APA’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5) Autism Spectrum Disorder is defined as follows:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. 1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
   2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
   3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to the absence of interest in peers…

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. 1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
   2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take the same route or eat the same food every day).
   3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
   4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)…

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for the general developmental level.

New York State DOH Clinical Practice Guidelines for Autism Spectrum Disorders

Three documents from the New York State Department of Health Clinical Practice Guideline on Assessment and Intervention Services for Young Children (Age 0-3) with Autism Spectrum Disorders (ASD):

• Report on the Recommendations
• A Quick Reference Guide for Parents and Professionals
• Report of the Research of Evidence

New York State Department of Health Clinical Practice Guideline on Assessment and Intervention Services for Young Children (Age 0-3) with Autism Spectrum Disorders (ASD):  2017 Update,  Report of the Recommendations, New York State Department of Health, Bureau of Early Intervention, July 24, 2017
https://www.health.ny.gov/community/infants_children/early_intervention/autism/docs/report_recommendations_update.pdf

A Quick Reference Guide for Parents and Professionals, New York State Department of Health, Bureau of Early Intervention, July 24, 2017
https://www.health.ny.gov/publications/20152.pdf

Report of the Research of Evidence, New York State Department of Health, Bureau of Early Intervention, July 24, 2017 https://www.health.ny.gov/community/infants_children/early_intervention/autism/docs/report_of_the_research.pdf

Who evaluates a child for autism?

Several different professions are trained and qualified to evaluate and diagnose autism and autistic spectrum disorders.  These include psychologists, neurologists, pediatricians, and psychiatrists.  Not only should a parent choose the right professional based on training and licensing qualifications, but the choice should also be made based on the professional’s experience with autism.

How is an evaluation conducted?

Autism, by definition, is a behaviorally defined diagnosis.  That is to say, the diagnosis is made based on the presence of several observable behaviors, and not, for example, based on a blood test, an X-ray, a CT Scan, an MRI, or some other medical or genetic test.  Therefore, technically speaking, autism can be diagnosed based simply on the behavioral observations of a qualified professional.  There are, though, other more objective measures that may be used.  For example, there is a well-known interview checklist/behavioral observation called the Childhood Autism Rating Scale (CARS), and there is another well-regarded test called the Autism Diagnostic Observation Schedule (ADOS) in which a child is observed during a series of standardized play scenarios and rated on a number of social and communicative behaviors.

Is there a genetic test to diagnose autism?  Is autism genetic?

There is not a genetic or metabolic test to diagnose autism, however, there is great interest among researchers in this topic.

According to the prestigious Proceedings of the National Academy of Sciences (July 2007), a review of three large databases from families with at least two autistic children indicates the state of research on the genetics of autism:

• there is not a specific “autism gene”
• “the vast majority” of cases of autism occur as a result of spontaneous gene mutations,
• those mutations may become more likely as parents get older, and
• autism likely involves many genes.

It is very important to indicate that the authors of this landmark study note that their mathematical calculations did not include environmental factors that may increase the likelihood of autism, and, therefore, their study does not indicate and does not imply that any autism cases were caused solely by genetics.

It is interesting to wonder and speculate about future discoveries and solving the mysteries that surround autism’s nature/nurture interactions.  In wondering, one can’t help but speculate about the autisms (plural) that will be defined and the different treatment options that will become available for each.  Currently, we are able to offer effective, educationally-based treatment options.

What are the long-term outcomes among children with Autism and Pervasive Developmental Disorder? 

Children who are diagnosed on the autistic spectrum are indeed expected to learn and make progress across developmental domains, however, we would not expect a child with an autistic spectrum disorder to simply “grow out of” their symptoms.  Currently, we do not speak of a “cure” for autism, but we indeed have effective educational treatment options available.

What are common elements of effective treatment for autism?

Michael Guralnick’s landmark 1997 book, The Effectiveness of Early Intervention, reviewed treatment options on eight “gold standard” programs for the treatment of autism (listed alphabetically: Douglass Developmental Disabilities Center at Rutgers University, Health Sciences Center at the University of Colorado, LEAP: Learning Experiences – an Alternative Program for Preschoolers and Parents, the May Institute in Boston, the Princeton Child Development Institute at Princeton University, TEACCH: Treatment and Education of Autistic and Communication-Handicapped Children, the Walden Preschool at the Emory University School of Medicine, and the Young Autism Program at the University of California at Los Angeles).  Here are common elements of the eight programs reviewed:

(1) CURRICULUM CONTENT:

• Ability to attend to environmental elements (peers, adults, shifting attn, dividing attn)
• Ability to Imitate (Verbal and Motor)
• Ability to Use/Understand Language (successive approx., Total Communication)
• Ability to Play Appropriately (decrease idiosyncratic/repetitive, increase pretend, imitate)
• Ability to Socially Interact (Adult-Child predictable, Child-Child less so, inclusion)

(2) HIGHLY SUPPORTIVE ENVIRONMENT & GENERALIZATIONS STRATEGIES:

• Systematic, increasingly complex tasks
• Severe information processing delays
• Hand-over-hand with fading

(3) PREDICTABILITY & ROUTINE:

• Warning, walk-through, Transitional Object, Visual Aids, Familiar Rituals.

(4) FUNCTIONAL APPROACH TO BEHAVIOR:

• Detailed record of behavior (time, antecedent, consequences)
• Hypotheses Generated (behavior conveys “I want help,” or “I don’t like this”)
• Change Environment (to increase coping strategies)

(5) TRANSITION PLANNING:

• Home à Preschool à Kindergarten
• Teach “Survival Skills”

(6) FAMILY INVOLVEMENT:

• Parents must be active co-therapists

Of course, every child is different and there are many different ways to learn, but what follows is a summary of some intervention options:

Applied Behavior Analysis and Discrete Trial Teaching:

Research has shown that Discrete Trial Teaching (a technique of Applied Behavior Analysis) is a highly effective means of teaching children with Pervasive Developmental Disorder or Autism. Over time, a child may no longer need such intensive instruction, and may even lose the diagnosis entirely.  Parents may face difficulties in trying to help their children and contradicting information may compound frustrations. The goal of this summary is to provide an introduction and understanding of the techniques of Discrete Trial Teaching and Applied Behavior Analysis. Applied Behavior Analysis (“ABA”) is based on Learning Theory, which states, “learning is a change of observable and measurable behavior that lasts over time.”

The “A-B-C’s” of ABA are Antecedents, Behavior, and Consequences:

ANTECEDENT———–A parent calls a child to the table.

BEHAVIOR——————The child comes to the table.

CONSEQUENCE———-The child gets to enjoy dinner.

ANTECEDENTS———-are also called———DISCRIMINATIVE STIMULI————(S^D)

BEHAVIORS —————-are also called———RESPONSES——————————-(R)

CONSEQUENCES ——–are also called———REINFORCERS (if child responds correctly)–(S^R)

CONSEQUENCES ——–are also called———PROMPTS (if child responds incorrectly)

WHY USE APPLIED BEHAVIOR ANALYSIS (ABA)?

• ABA provides intensive instruction that has been supported by findings of extensive research.
• ABA provides immediate feedback.
• ABA is highly individualized to each child’s needs.
• ABA allows us to follow a child’s progress and modify programs through the use of detailed data.

WHEN PRESENTING AN S^D (i.e., “antecedent” or instruction):

• Be sure the child is attending.
• Maintain a clear, even tone of voice.
• Be brief.
• Be ready to provide the S^R (i.e., “consequence,” “prompt,” or “reinforcer”).
• Present the S^D (i.e., antecedent/instruction) only once until the child gives a response.

(R) —- RESPONSE

• Responses (R) can be: CORRECT, INCORRECT, NO RESPONSE, PROMPTED.

A correct response is not accompanied by any extraneous behaviors.

(S^R) —- CONSEQUENCE

• A consequence (S^R) must be reinforcing to the specific child.
• A consequence (S^R) must be provided immediately after the child’s response (R).

TEACHING with ABA — GETTING STARTED:

• A sparse environment (free of distraction) is required to begin teaching.
• Over time, gradually introduce distractions into the teaching environment to generalize skills to natural settings (e.g., increase noise, visual distractions, increase people present, change settings).
• Prepare interesting materials so that the child does not have much “down time” to wait.
•  “REINFORCERS” are used to help teach and motivate a child to learn.  Reinforcers should be presented immediately following a correct response from the child.
• We are born with responses to PRIMARY REINFORCERS (e.g., foods, drinks).
• We learn to respond to SECONDARY REINFORCERS (e.g., praise, hugs, toys).
• A “REINFORCER ASSESSMENT” should be used (see the videotape for a demonstration).

ABA – READINESS SKILLS:

• Imitation of Adults and Peers
• Sustaining Eye Contact
• Observing Learning Cues
• Sitting Appropriately

ABA – GROSS-MOTOR IMITATION:

• Teaches a child how to learn through imitation.
• Start with easy movements (e.g., clapping, stomping).
• Once the imitation of several movements is mastered, begin to pair 2 together.
• Gradually teach appropriate toy play and actions.

ABA – EYE CONTACT:

• Reinforce eye contact whenever possible.
• Begin by expecting eye contact for just one second.
• Once a child can glance, work on maintaining eye contact for a few seconds at a time.
• Once a child is verbal, work on achieving eye contact after you prompt it using one word, then a few words, then a full sentence.

ABA – LEARNING NEW SKILLS:

• Establish a baseline by collecting data.
• Data is used to measure a child’s improvement after teaching.
• Set specific program goals.
• Break goals into steps.
• Make sure the child has the prerequisite skills.
• A program is usually considered “MASTERED” when a child responds correctly 80% of the time across two consecutive sessions, and across two therapists.
• Use a “CONTINUOUS” schedule of reinforcement (i.e., reinforce every correct response).
• As performance improves, move to an “INTERMITTENT” schedule of reinforcement (e.g., reinforce every 3^rd or 4^th correct response).
• Intersperse new skills with “MAINTENANCE SKILLS”

(tasks the child has already mastered).

ABA – MAINTENANCE:

• Once mastered, a skill goes into a “MAINTENANCE PROGRAM”.
• Maintenance occurs when a child is able to demonstrate an acquired skill over time.
• Maintenance ensures that a child does not lose acquired skills.
• Maintenance Programs should be re-visited once per week or once every two weeks.
• If a skill is no longer maintained, re-teach the skill until it is again mastered.

ABA – AVOIDANCE:

• It is very common for a child to resist teaching (especially in the beginning).
• A child’s avoidance may take the form of crying, escaping, or using aggression.
• The teacher should remain calm and firm and should ignore the avoidance behavior.

ABA – PROMPTING:

• A “PROMPT” is anything that elicits a correct response.
• Either prompt with or immediately following an S^D instruction so that the child learns the correct response (R)
• FADE prompts as soon as possible.
• There are many types of prompts

PHYSICAL – hand-over-hand guidance

VERBAL – the teacher verbalizes, “Say ______”

MODELING – the teacher demonstrates the correct response

POSITION  – arrange objects in such a way to increase the likelihood of a correct response

GESTURAL    the teacher uses physical actions

 ABA – “ERRORLESS LEARNING”:

• Allows a child to learn without making errors
• A child is prompted for a number of successive trials until the child can respond independently.

ABA – “NO-NO PROMPT”:

• A method of teaching that allows a child to make errors, however, it also teaches a child how to self-correct.
• Present S^D, if an incorrect response occurs the teacher says “No” or “Try again” (with an instructional tone of voice, absent of frustration).

ABA – SHAPING:

• SHAPING is a technique teaching a new skill with the child’s current skill as a starting point (e.g., if the goal is to teach a child to say “Mommy” and the child currently only says “ah,” use of Successive Approximations indicates that we first reinforce “ah,” than reinforce “ma”, than “mama” and ultimately “mommy”)
• To SHAPE is a desired response, the response is broken into simple steps
• A child is rewarded for coming closer and closer to the desired response
• Steps are selected and guided by the child’s ability
• Only reinforce the most recently acquired step

 ABA – GENERALIZATION:

• GENERALIZATION occurs when a child is able to demonstrate a skill across cues, materials, people, and settings
• GENERALIZATION is the ultimate goal of ABA

 ABA – TRACKING DATA:

• Skill ACQUISITION, MAINTENANCE, and GENERALIZATION must be monitored on an ongoing basis by ABA providers using PROGRAM-SHEETS, DATA SHEETS, and GRAPHS.

How can I build play skills for a child with autism?

There is a developmental sequence through which play skills typically develop.  It is important to understand this sequence and then properly define goals.  There are six stages of play development:

1. OBJECT MANIPULATION & ISOLATED PLAY – A child learns to manipulate a toy independently and appropriately without the help of an adult.
2. PARALLEL PLAY – Involves one child playing near another child without actually interacting.
3. COOPERATIVE PLAY – Involves two children playing with one toy together (e.g., completing a puzzle, constructing a train-set).
4. TURN-TAKING – Involves the reciprocal interaction of two or more peers.  Includes the awareness of the interaction, as well as the willingness and ability to wait and share.
5. GROUP GAMES – Expands the number of children involved in a given activity.
6. PRETEND – Involves the use of imagination to demonstrate the function of objects or emotions.

ASSESS SKILL LEVEL and DEFINE TARGET SKILLS

Assess a child’s skill level to determine which toys to use and which target skills to focus on.  BASIC TARGET SKILLS include eye contact, appropriate sitting, attending, gross-motor imitation, object manipulation, cause-and-effect, and matching.  INTERMEDIATE TARGET SKILLS include following simple instructions, receptive/expressive labeling, waiting, sharing, turn-taking, acquiring objects on request, fine-motor manipulation, and task completion.  ADVANCED SKILLS include following complex directions, conversation, initiating play, tolerating change, pretend play, and choice-making.

TASK ANALYSIS

Task Analysis is an important step in teaching that involves breaking goals/tasks into their smallest components, then teaching those components one at a time.

STRUCTURE THE PLAY AREA

Structuring the play area is advised to maximize the efficiency of learning.  This may include the following:

• Minimize distractions
• Give one toy at a time
• Position toys within reach of the child
• Rotate toys (to decrease boredom and perseveration)
• Remain aware of the child’s interests
• Expand play (e.g., if a child pushes a car, you put a doll in the car)
• Redirect self-stimulatory or perseveration (e.g., if a child lines up blocks, redirect to building with blocks)

PROMPTS

“Prompts” elicit a correct response.  You may start with heavy (physical) prompts, than fade to less heavy (verbal) prompts until the child masters the task, and ultimately completes the task independently.

REINFORCERS

“Reinforcers” increase the frequency of the desired behavior.  Reinforcers are used to help teach and motivate a child to learn.  We are born with responses to PRIMARY REINFORCERS (e.g., foods, drinks).  We learn to respond to SECONDARY REINFORCERS (e.g., praise, hugs, toys).  A “REINFORCER ASSESSMENT” may be used to determine which toys are the most reinforcing for a particular child.  For example, from a pile of 20 toys, choices are offered to the child two-by-two.  Then, from the resulting pile of 10 toys, the procedure is repeated to determine the child’s “Top 5” toy preferences.  These would be used to reinforce positive behavior.

MODIFY and ADAPT

Modify “rules” and adapt materials to a child’s level (e.g., use puzzles with handles for a child with fine-motor difficulties; Teach the concepts of “stop” and “go” by playing a version of “Musical Chairs” without removing chairs for a child that does not understand the more complex nature of “competing” for a seat).  Teachers may also use Observational Learning, Video Modeling, and Scripts to provide opportunities for imitation and learning.  Finally, some children with autism learn well with Picture Schedules, to help provide predictability and understanding of expectations and sequences in play and games.

What Non-ABA methods are available for the treatment of autism?

According to the New York State Clinical Practice Guidelines (1999), “It is recommended that principles of Applied Behavior Analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism.”  Of the several other therapeutic models, some target specific symptoms, some do not currently have adequate evidence to indicate their effectiveness, and some are controversial or not indicated.  There are strong advocates for many different theories and interventions, and it is not the purpose of this summary to advocate for or against any one of these “Non-ABA” methods.  Rather, it is our intention to simply present information based on peer-reviewed research.  Of course, as the scientific literature builds, the landscape may indeed change, and subsequent editions of this book will provide updates based on the most current research.  For now, this summary (based largely on findings in the New York State Clinical Practice Guidelines) is presented to provide a brief introduction to (not a conclusion about) the dynamic state of the field of Non-ABA interventions for autism:

DRUG THERAPY:

Medications do not “cure” autism, but they may help manage symptoms such as seizures, anxiety/depression (SSRI’s), aggression (beta-blockers), hyperactivity (stimulants), and self-injurious behavior (opiate blockers), and sleep disturbance (sedatives).  NYS Clinical Practice Guidelines indicate “Psychoactive medication may be useful in some young children with autism who have severe behavioral problems that have not responded to behavioral techniques.”

VITAMIN/MINERAL THERAPY:

Proponents argue that vitamin B15, B6, and magnesium may be helpful in improving speech and sleep, decreasing irritability and self-stimulatory behaviors, and increasing attention span.  NYS Clinical Practice Guidelines: “No adequate evidence has been found that administering high doses of any type of vitamin or trace mineral is an effective treatment for autism.  Therefore, vitamin therapies are not recommended…”

GLUTEN-FREE, CASEIN-FREE DIETS:

The theory is that some children demonstrate symptoms of autism due to an intolerance of many foods containing gluten and casein.  Physical symptoms may include excessive thirst, sweating, low blood sugar, diarrhea, bloating, and dark circles under the eyes.  There is an organization called “GFCF KIDS” (which has over 3,000 members) that provides education and advocacy on this issue. It should be noted, too, that according to the NYS Clinical Practice Guidelines:  “No adequate evidence has been found to support the effectiveness of the use of special diets…not recommended.”

FLOOR TIME:

Stanley Greenspan’s “Floor Time” program (a.k.a. the “Developmental, Individual Difference, Relationship” model) primarily addresses affect, relationships, developmental levels, and individual differences.  Parents are encouraged to spend six to ten 20- to 30-minute sessions engaged in “Floor Time” play, opening social circles of communication and teaching skills.  NYS Clinical Practice Guidelines:  “No adequate evidence has been found that [Floor Time] is effective for treating autism…[it is] not recommended as a primary intervention…”  It should be noted, though, that there is active interest and ongoing research in this approach as an intervention for autism.

OCCUPATIONAL THERAPY/SENSORY INTEGRATION:

Occupational therapy usually focuses on improving fine-motor, adaptive, and sensory functioning (including but not limited to visual, auditory, touch, movement, body positioning, balance, etc.).  Sensory Integration techniques may include (but are not limited to) massaging, swinging, bouncing, rolling, etc.  NYS Clinical Practice Guidelines:  “No adequate evidence has been found that supports the effectiveness of sensory integration therapy for treating autism…[it is] not recommended as a primary intervention…”  If sensory integration techniques are being incorporated into a child’s program, it is important to remain compatible with the primary treatment, set measurable and objective goals/outcomes, and collect baseline and ongoing data.

AUDITORY INTEGRATION TRAINING:

Filtered auditory stimulation is used to modify what are hypothesized to be distorted perceptions.  NYS Clinical Practice Guidelines:  “Because research has demonstrated that this intervention is not effective, it is recommended that AIT not be used…”  Additionally, the American Academy of Pediatrics – Committee on Children With Disabilities has issued this Position Statement:  “This statement reviews the basis for two new therapies for autism auditory integration training and facilitative communication. Both therapies seek to improve communication skills. Currently, available information does not support the claims of proponents that these treatments are efficacious. Their use does not appear warranted at this time, except within research protocols.”

HOLDING THERAPY:

Child Psychiatrist Dr. Martha Welch wrote the book “Holding Time” in which she advises parents to calmly and firmly hold their child for certain periods of time (even if the child is distressed and resistant), and then offer comfort when the child stops resisting.  Some argue this is a variant of the theory behind sensory integration, while others argue that it is too traumatic.  There are no supportive studies on Holding Therapy in peer-reviewed professional journals.

PICTURE EXCHANGE COMMUNICATION SYSTEM (PECS):

Developed to help nonverbal children initiate communication.  Easy to use in a variety of settings.  PECS allows for the construction of “sentences”, and allows children to comment and answer questions.  The manual provides templates for data collection.  As part of a “Total Communication” approach, PECS does not inhibit a child’s ability to use verbal language and, therefore, may indeed be a useful technique in the treatment of autism.

FACILITATED COMMUNICATION:

An adult “Facilitator” provides “support” of the autistic child’s hands over a keyboard to “help” the child “send” messages.  Numerous controlled studies found that the messages often come from the facilitator.  NYS Clinical Practice Guidelines:  “Because no adequate evidence has been found of effectiveness, and because there are possible serious harms associated with this intervention, it is strongly recommended that facilitated communication not be used as an intervention for children with autism.” Additionally, the American Academy of Pediatrics – Committee on Children With Disabilities has issued this Position Statement:  “This statement reviews the basis for two new therapies for autism auditory integration training and facilitative communication. Both therapies seek to improve communication skills. Currently, available information does not support the claims of proponents that these treatments are efficacious. Their use does not appear warranted at this time, except within research protocols.”

MUSIC THERAPY:

The theory is that music is therapeutic because it is inherently structured, enjoyable, and likely to influence senses and behavior.  NYS Clinical Practice Guidelines:  “No adequate evidence has been found to support the effectiveness of using music therapy as a separate, discrete therapy for children with autism…[it is] not recommended.”

ANTI-YEAST THERAPY:

The theory is that yeast (e.g., candida albicans) can build (e.g., when children take too many antibiotic medications), and cause adverse health and developmental consequences.  Treatment is oral anti-fungal medication or special diets.  NYS Clinical Practice Guidelines: “No adequate evidence has been found to support anti-yeast therapies…not recommended.”