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News from the National Autism Center

September 2009,
a downloadable PDF
National Standard's Report regarding Evidence-Based Practice Guidelines for Children with ASD

September 2009,
a downloadable PDF,
Evidence-Based Practice and Autism in the Schools: A Guide to Providing Appropriate Interventions to Students with ASD

2009,
from the web site,
The Autsim Speaks, ASD Video Glossary is an innovative video "library" highlighting the development of typically developing children compared to the development of children with autism. A great tool for parents and professionals to learn more about the early red flags and diagnostic features of autism spectrum disorders (ASD). Registration is free.

What is Autism?

What is Autism?

Defining Autism Spectrum Disorders

Autism is a complex neurobehavioral disorder characterized by impairment in reciprocal social interaction, impairment in communication, and the presence of repetitive and stereotypic patterns of behaviors, interests, and activities. The onset of symptoms is typically before the age of 3 years. The severity of impairment in the given domains as well as the pattern of impairments varies from individual to individual; that is why diagnosticians refer to a spectrum of disability.

Impairments in social interaction range from: difficulty initiating and maintaining interaction, impaired ability to recognize and experience emotions, and difficulty processing and appreciating the thoughts and feelings of others. Communication deficits range from no useful form of communication to very advanced language abilities, but little ability to use language in a social manner. Repetitive and stereotypic behaviors include perseverative behaviors such as complex rituals, extreme difficulty adapting to change and transition, and unusual movements such as hand flapping or whirling.

Autism is one diagnosis within the larger category of Pervasive Developmental Disorders described in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision edition (DSM-IV, TR, 2000). Autism, along with related, but slightly different disorders of Asperger Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified, constitute the conditions commonly referred to as the Autism Spectrum Disorders. Two rare disorders, Rett Syndrome (a genetic disorder) and Disintegrative Disorder of Childhood are the other currently recognized pervasive developmental disorders.

Once thought to be very rare, autism spectrum disorders are estimated to occur in as many as one in every 110 people. (CDC, 2010)

Adapted from: Association for Science in  Autism Treatment

What are the Characteristics of Autism?

What are the Characteristics of Autism?

Autism affects the way a child perceives the world and makes communication and social interaction difficult. The child may also have repetitive behaviors or intense interests. Symptoms, and their severity, are different for each of the affected areas - Communication, Social Interaction, and Repetitive Behaviors. A child may not have the same symptoms and may seem very different from another child with the same diagnosis. It is sometimes said, that if you know one person with autism; you know one person with autism.

The symptoms of autism typically last throughout a person’s lifetime. A mildly affected person might seem merely quirky and lead a typical life. A severely affected person might be unable to speak or care for himself. Early intervention can make extraordinary differences in a child’s development. How a child is functioning now may be very different from how he or she will function later on in life.

Communication Difficulties

By age three, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says a word or two, turns and looks when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is “no.”

Some people with autism remain mute throughout their lives; although the majority develop spoken language and all eventually learn to communicate in some way. Some infants who later show signs of autism “coo” and babble during the first few months of life, but they stop. Others may be delayed, developing language as late as age five to nine. Some children may learn to use communication systems such as pictures or sign language.

Children with autism who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. They may repeat or “parrot” what they hear, a condition called echolalia. Although many children with autism go through a stage where they repeat what they hear, it normally passes by the time they are three.

Some children with autism who are only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The “give and take” of normal conversations may be hard, although they may often carry on a monologue on a favorite subject, giving others little opportunity to comment. Another common difficulty is the inability to understand body language, tone of voice, or “phrases of speech.” For example, someone with autism might interpret a sarcastic expression such as “Oh, that's just great” as meaning it really is great.

While it can be challenging for others to understand what children with autism are less able to say, their body language may also be difficult to understand. Facial expressions, movements, and gestures

may not match what they are saying. Also their tone of voice may fail to reflect their feelings. They may use a high-pitched, sing-song, or flat, robot-like voice. Some children with relatively good language skills speak like little adults, failing to pick up on the “kid-speak” that is common in their peers. Without meaningful gestures or the language to ask for things, people with autism are less able to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, children with autism do whatever they can to get through to others. As they grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result, they are at greater risk of becoming anxious or depressed.

Social Symptoms

From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.

By contrast, most children with autism seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interactions. Even in the first year of life, many do not interact and will avoid normal eye contact. They may seem indifferent to people, and prefer being alone. They may resist attention and seem to passively accept hugs and cuddling. Later, they may fail to seek comfort or respond to parents’ displays of anger or affection in a typical way. Research has suggested that although children with autism are attached to their parents, their expression of this attachment can be unusual and difficult to “read.”  To parents, it may seem as if their child is not connected at all. Parents who looked forward to the joys of cuddling, teaching and playing with their child may feel crushed by this lack of expected and typical attachment behavior.

Children with autism also are slower in learning to interpret what others are thinking and feeling. Subtle social cues such as a smile, a wave, or a grimace-may have little meaning to a child with autism. To a child who misses these cues, “Come here” may always mean the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with autism have difficulty seeing things from another person’s perspective. Most five year olds understand that other people have different thoughts, feelings, and goals than they have. A child with autism may lack such understanding. This inability leaves them unable to predict or understand other people’s actions.

Although not universal, it is common for people with autism to have difficulty coping with and expressing their emotions. This can take the form of “immature” behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. Sometimes they may be disruptive and physically aggressive, making social relationships even more difficult. They have a tendency to “lose control,” particularly when they’re in a strange or overwhelming environment, or when angry or frustrated. At times, they may break things, attack others or hurt themselves. In their frustration, some bang their heads, pull their hair or bite their arms.

Although children with autism usually appear physically normal, odd repetitive motions may set them apart from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals repeatedly flap their arms or walk on their toes. Some suddenly freeze in a position.

As children, individuals with autism might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone moves one of the toys, these children may become tremendously upset. Many children with autism need, and demand, absolute consistency in their environment. A slight change in routine, such as mealtime, dressing, taking a bath, and going to school at a certain time or by the same route, can be extremely stressful.

Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. These strong interests may be unusual because of their content (e.g. being interested in fans or toilets) or because of the intensity of the interest (e.g. knowing much more detailed information about Thomas the Tank Engine than peers). For example, a child with autism might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often older children with autism have a great interest in numbers/letters, symbols, dates or science topics.

Adapted from: Autism Speaks

Learning the Signs of Autism and Getting Help

Learning the Signs of Autism and Getting Help

Research now suggests that children as young as 1 year of age can show signs of autism. As a parent or caregiver you can learn the early signs of autism and understand the typical developmental milestones your child should be reaching at different ages. Please look over the following list. If you have any concerns about your child’s development, don't wait. Speak to your doctor about screening your child for autism. While validated screening for autism starts at 16 months, the best bet for children younger than 16 months is to have their development screened at every “well visit” with a validated developmental screening tool. If your child does have autism, early intervention may be his or her best hope.

Watch for the Red Flags of Autism 

(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.)

In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened for to ensure that he/she is on the right developmental path. If your child shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age
  • For more information about recognizing the early signs of developmental and behavioral disorders, please visit http://www.firstsigns.org or the Centers for Disease Control at www.cdc.gov/actearly.

Adapted from Autism Speaks

 

What Causes Autism?

What Causes Autism?

At this time, the exact cause of autism remains uncertain, but research suggests that any one of several factors may be involved in its onset: genetic factors, possible environmental influences; certain types of infections; problems before, during, or after birth. Some studies suggest the possibility of a disruption of very early brain development, before birth.

There is extensive past and ongoing research intending to better understand the causes of autism.

Increased frequency of occurrence of autism within families supports a probable genetic contribution to the disorder; however, it is very unlikely that any one single genetic defect will explain all cases of autism. Observations that the identical twins of an individual with autism has only about a 60% chance of also having autism, lead to the conclusion that genetics alone do not explain the condition. Ongoing research is seeking to find out if a genetic predisposition to autism may be triggered to develop into autism by the occurrence of certain environmental, infectious, immunological, and other conditions or events.

At this time, there is no evidence that specific toxins in the environment, immunization practices, dietary differences, or immunologic differences cause autism. It is quite likely that some combination of genetic, atypical nervous system development, and environmental agents will explain the cause of autism, and that the exact cause may vary from one individual to another.

Since the definition of autism is a behavioral definition, meaning that it is solely defined through a certain constellation of behaviors, and not through biological tests, it is quite likely that different types of conditions could result in similar behavioral manifestations among individuals. For instance, in some specific conditions such as Fragile X syndrome, individuals may also have the behavioral characteristics of autism.

At one time, autism was thought to be caused by faulty parenting (“refrigerator mothers”) and it is now clear that this is not a cause of autism. The theory of faulty parenting leading to autism has not disappeared entirely however, and still crops up in “failure to bond” theories and “attachment disorder” theories about the cause of autism. Most researchers reject these types of explanations.

Adapted from: Association for Science in Autism Treatment

Diagnosing Autism

Diagnosing Autism

How is Autism Diagnosed?

Presently, there is not a medical test for autism; a DSM diagnosis is based on observed behavior and educational and psychological testing.

As the symptoms of autism vary, so do the routes to obtaining a diagnosis. A parent may have raised questions with a pediatrician. Some children are identified as having developmental delays before obtaining a diagnosis.

It is critical to educate parents and physicians so that children with autism are identified as early as possible. From birth to at least 36 months of age, every child should be screened for developmental milestones during routine well visits. If concerns about a child's development are raised, their doctor should refer the child to Early Intervention and a specialist for a developmental evaluation.

DSM-IV-TR Criteria for Diagnosing Autism

I. A total of six (or more) items from heading (A), (B), and (C), with at least two from (A), and one each from (B) and (C):

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

• Marked impairments in the use of multiple nonverbal behaviors such as eye-to- eye gaze, facial expression, body posture, and gestures to regulate social interaction.
• Failure to develop peer relationships appropriate to developmental level.
• 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 to other people).
• A lack of social or emotional reciprocity.

(B) Qualitative impairments in communication as manifested by at least one of the following:

• Delay in or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
• In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
• Stereotyped and repetitive use of language or idiosyncratic language.
• Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.

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

• Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
• Apparently inflexible adherence to specific, nonfunctional routines or rituals.
• Stereotyped and repetitive motor mannerisms (e.g. Hand or finger flapping or twisting, or complex whole-body movements).
• Persistent preoccupation with parts of objects.

II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) Social interaction.
(B) Language is used in social communication.
(C) Symbolic or imaginative play.

III. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
Source: Diagnostic and Statistical Manual of Mental Disorders; Fourth Edition

Autism Screening Tools:

Most autism screening tools are designed to detect autism spectrum disorders specifically, concentrate on social and communication impairment in children 18 months of age and older, and focus on all three DSM-IV criteria for autism. Their limitations lie in the lack of highly validated autism screening tools available for children under 18 months of age. Since autism screening ideally would follow a developmental screening that has indicated concerns, the administering clinician should directly observe the child in addition to using an autism screening tool questionnaire such as the Modified Checklist for Autism in Toddlers (M-CHAT).
The MCHAT, is a list of simple questions about your child. The answers determine whether he or she should be referred to a specialist, usually a Developmental Pediatrician, a Neurologist, a Psychiatrist or a Psychologist, for further evaluation.

To obtain additional information on the M-CHAT, click on the links below.
Modified Checklist for Autism in Toddlers (M-CHAT)
by Diana Robins, M.A., Deborah Fein, Ph.D., et al. (for children 16-30 months)

Adapted from: www.firstsigns.org

Additional Diagnostic Tools

Additional Diagnostic Tools

While there is no one “test” that can detect autism, several additional screening instruments have been developed that are now commonly used to assist in the diagnosis and treatment of autism.

Autism Screening Instrument for Educational Planning: Third Edition (ASIEP-3) by David A. Krug, Ph.D., Joel R. Arick, Ph.D., and Patricia J. Almond, Ph.D.
This individually administered instrument helps professionals evaluate children with autism and develop appropriate instructional plans. It can also be used for differential diagnosis, as it distinguishes youngsters with autism from those with other severe handicaps.

The Assessment of Basic Language and Learning Skills -Revised (ABLLS-R) by James W. Partington, Ph.D., BCBA
The ABLLS-R is an assessment, curriculum guide, and skills tracking system for children who have autism or other developmental disabilities. It allows you to identify deficiencies in language, academic, self-help, and motor skills and then implement and monitor individualized intervention.

Autism Diagnostic Observation Schedule (ADOS) by Catherine Lord, Ph.D., Michael Rutter, M.D., FRS, Pamela C. DiLavore, Ph.D., and Susan Risi, Ph.D.
This semi-structured assessment can be used to evaluate almost anyone suspected of having autism—from toddlers to adults, from children with no speech to adults who are verbally fluent. The ADOS consists of various activities that allow you to observe social and communication behaviors related to the diagnosis of pervasive developmental disorders. These activities provide interesting, standard contexts in which interaction can occur.

Bayley Scales of Infant and Toddler Development®, Third Edition (Bayley-III®) by Nancy Bayley, Ph.D
The Bayley Scales of Infant and Toddler Development is an assessment instrument designed to measure physical, motor, sensory, and cognitive development in babies and young children. It involves interaction between the child and examiner and observations in a series of tasks. The Bayley Scales can assist your child's pediatrician in identifying early signs of delays and potential learning disabilities.

Childhood Autism Rating Scale (CARS) by Eric Schopler, Ph.D., Robert J. Reichler, M.D., and Barbara Rochen Renner, Ph.D.
This 15-item behavior rating scale helps to identify children with autism and to distinguish them from developmentally handicapped children who are not autistic. In addition, it distinguishes mild-to-moderate from severe autism. Brief, convenient, and suitable for use with any child over 2 years of age, the Childhood Autism Rating Scale (CARS) makes it much easier for clinicians and educators to recognize and classify autistic children
.

Developmental Profile 3 (DP-3) by Gerald D. Alpern, Ph.D.
Designed to evaluate children from birth through age 12 years, 11 months, the DP-3 includes 180 items, each describing a particular skill. The respondent simply indicates whether or not the child has mastered the skill in question. The DP-3 provides a General Development score as well as the following scale scores: Physical, Adaptive Behavior, Social-Emotional, Cognitive, and Communication.

Gilliam Asperger's Disorder Scale (GADS) by James E. Gilliam
Based on the most current and relevant definitions and diagnostic criteria of Asperger's Disorder, the GADS is useful for contributing valuable information toward the identification of children who have this disorder. Easily completed by a parent and professional who knows the child, the GADS provides documentation about the essential behavior characteristics of Asperger's Disorder necessary for diagnosis. It can be used with confidence in the assessment process, documenting behavioral progress, and targeting goals for IEPs.

Gilliam Autism Rating Scale – Second Edition (GARS-2) by James E. Gilliam
GARS-2, a revision of the popular Gilliam Autism Rating Scale, assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals ages 3 through 22. It also helps estimate the severity of the child's disorder. Items on the GARS-2 are based on the definitions of autism adopted by the Autism Society of America and the Diagnostic and Statistical Manual of Mental Disorders: Fourth Edition-Text Revision (DSM-IV-TR).

Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) by Sara S. Sparrow, Domenic V. Cicchetti & David A. Balla
The Vineland-II provides a measure of personal and social skills needed for everyday living from birth to adulthood. Used to identify individuals who have Intellectual and Developmental Disabilities, developmental delays, autism spectrum disorders, and other impairments. The Vineland aids in diagnosis, and provides valuable information for developing educational and treatment plans.


Working with Professionals

Whether you or your child's pediatrician is the first to suspect autism, once identified, your child will often be referred to a multidisciplinary educational team who specialize in working with children with autism spectrum disorders. This may include some or all of the following educational professionals.

School Psychologists:
School psychologists provide psychological and behavioral assessment and consultation.  If there is a serious behavioral problem, school psychologists help in conducting a functional analysis of behavior and writing an informal or formal behavior support/improvement plan.  School psychologists may also support the development of social skills and friendships.

Board Certified Behavior Analysts (BCBAs):
Board certified behavior analysts conduct behavioral assessments and provide interpretations of the results of such assessments. They design and supervise behavior analytic interventions to address both the acquisition of skills and the reduction of challenging behaviors. Many board certified behavior analysts also hold licenses or certifications in other disciplines (e.g., psychology).

Speech and Language Pathologists (SLPs):
Speech and language pathologists are involved in the design and implementation of programs for correction of communication and speech impairments. Treatment areas may include muscle control related to speech production, articulation, voice inflection, vocabulary development, receptive and expressive language skills, conversation skills, and social pragmatics. When working with individuals who struggle significantly with spoken communication, speech pathologists are also involved in the selection and implementation of augmentative communication systems.

Occupational Therapists (OTs):
Occupational therapists provide plans for teaching daily living skills such as dressing and hygiene, as well as fine motor skills related to holding objects, handwriting, cutting, and other activities. Their consultation focuses on the use of specific tasks or goal-directed activities designed to improve the functional performance of an individual as it relates to the smaller muscle groups. They may also work on sitting, posture, and perceptual skills.

Physical Therapists (PTs):
As is the case with occupational therapists, physical therapists are also concerned with improving or restoring physical function; however, they focus upon the larger muscle groups. Their consultation focuses on improving posture, locomotion, strength, endurance, balance, coordination, joint mobility and range of movement and flexibility. 

Adapted from: Association for Science in Autism Treatment

It is important that parents and professionals work together for the child's benefit. While professionals will use their experience and training to make recommendations about your child's treatment and educational options, you have unique knowledge about his/her needs and abilities.

Once an educational program is in place, communication between parents and professionals is essential to monitor and maximize the child's progress. Here are some guidelines for working with professionals:

  • Be informed. Learn as much as you can about your child's disability so you can be an active participant in determining care. If you don't understand terms used by professionals, ask for clarification.
  • Be prepared. Be prepared for meetings with doctors, therapists, and school personnel. Write down your questions and concerns, and then note the answers.
  • Be organized. Many parents find it useful to keep a notebook detailing their child's diagnosis and treatment as well as meetings with professionals.
  • Communicate. It's important to ensure open communication - both good and bad. If you don't agree with a professional's recommendation, for example, say specifically why you don't.

 

After The Diagnosis

After The Diagnosis

  1. Don't Panic! For most parents, a diagnosis of autism can be like a kidney punch. You may feel breathless and overwhelmed. But remember that autism, despite its many challenges, is not a dangerous condition. There is no need to panic. You and your entire family will benefit if you can think clearly and calmly.
  2. Remember That Your Child has not Changed. Yesterday, your child was not labeled autistic. Today, he or she has been handed that label by a professional. But the label doesn't change your child or your love for him or her. All the good things you saw in your child yesterday are still there today, and will be there forever. Part of your job will be to help build on those strengths to compensate for the challenges of autism.
  3. Don't Rush Into Action. Research is clear that early intervention is important. By the same token, however, autistic children grow and develop over time just like everyone else. It's tempting to leap into as many therapeutic treatments as you can. But until you know what's best for your child, it's a good idea to take it
  4. Determine Your Child's Needs. What exactly are your child's needs and deficits? Autism is a spectrum disorder, which means that your child may have many needs or just a few. Does your child have speech delays ? Social deficits? Adaptive skills deficits? By asking all of these questions of your medical practitioner, your family and educational professionals, you can start to create a picture of the services your child might need.
  5. Research Your Autism Resources. Now that you know what your child needs, you need to determine whether those therapies are immediately available to you, and if they are, how to put them in place. Your medical insurance may cover only a fraction of the therapies you've discovered. Your school district may have specific options available. Once you know what's immediately available, you can set up a program that suits at least some of your child’s needs.
  6. Start with the Basics. Many interventions and treatments are available for children with autism. Start with the basics, the treatments that are easily available, funded, and most appropriate. For many families, the basics include behavioral therapy, speech and language services, and individualized educational programming. For younger children, home-based early intensive behavioral programs are often available; preschoolers and school-aged children may be offered interventions through the school system or their local regional center.
  7. Make Informed Program Changes as Needed. If you decide your child is not getting all he or she needs, you may be tempted to jump into many different interventions at the same time. Of course, there are interventions that have an immediate impact for the better or worse. Most treatments, however, require days, weeks or even months to really make a difference. By making changes slowly and observing your child's reactions, you can see what works and what doesn't.
  8. Remember to Breathe. Your child's diagnosis is important. But so is your own life, your other children, your health, and your finances. It's ok to take a break from time to time, and to just be. Only when you're at your best can you hope to give your child all he or she needs to grow, develop and enjoy life!

Adapted from: What to Do After the Autism Diagnosis, by Lisa Jo Rudy, www.about.com