Common Patterns in Children with ASDs

Children with ASDs have excessive, unusual, unique, peculiar or repetitive
behaviors interests and activities. These include attachment and fascination to
objects and various stereotypies that are repetitive, nonfunctional and
atypical. These include finger and hand movements, hand posing positions, self
injurious behaviors and rocking or twirling movements.

The above described activities and patterns are at times disruptive but rarely cause harm to the child. Repetitive mouthing and biting of fingers or hands can cause
chronic skin changes but infections are rare. The frequency of the activity or
behavior, however, can cause the child to be off task and miss educational and
learning opportunities.

Children with disorders other than ASDs also have stereotypies. These include children with profound mental retardation and hearing or vision sensory deficits. Neurotypical (NT) children may also briefly express such behaviors but they are transient and usually they can easily be distracted from the interests and behaviors. Stereotypies are often not seen until preschool age. Earlier patterns include toe walking that may persist into
school age. Sensory tics including sniffing and licking of non food items are
also common.

Another common pattern concerns food interests and disinterests. The food menu of children with ASDs is often very limited and generally is not associated with food allergy or adverse reactions. There is a subset of of children with ASD who have gluten or milk protein sensitivity but this is not the primary reason for limited food preferences.

Transitional support objects are often unusual. Most children have various “loveys” including blankets or stuffed animals during certain developmental stages. Children with
ASDs usually prefer common household items including keys, pens, action figures
or animal models including dinosaurs or animals. They often show an extended
attachment to these “carry objects” throughout an entire day or over many weeks
or months.  If they are forced to release this object they usually become upset
and a temper tantrum is a common result. Some children with ASDs allow one carry
object to be substituted for another with little concern. This attachment can
migrate to a new object only to return again in the future.   Although these
objects are carried almost everywhere the child does not use them to engage in
typical play activities.

Children with Asperger Syndrome (AS) often show an interest in various topics and fact gathering. Rather than carrying a toy care they may show detailed knowledge about specific car types and car specifications. AS children may have a knowledge of geography, paleontology or historical details that is not unusual for age in terms of topic but is excessive due to the quantity, quality, depth and level of interest. If forced
to change topics they usually return to the topic and may become upset and
rapidly escalate into a prolonged temper tantrum with associated aggressive or
self injurious behavior (SIB).

Children with ASDs who have associated severe intellectual disabilities are more prone to self injurious behaviors that can be precipitated by frustration due to difficulty coping and adjusting to transitions, change anxiety or communication difficulty. Additionally body states in terms of fatigue, illness pain and sleep deprivation will also
accelerate stereotypies and self injurious behavior (SIB). These types of
behaviors make it difficult to integrate these children into mainstream
educational activities.

Uneven Skills in Children with ASDs

Approximately 50% of children with ASDs have associated cognitive disabilities.
This may include intellectual disability, learning disabilities, learning style
weaknesses or splinter or savant skills. The prevalence of cognitive
disabilities has been decreasing. this is presumably due to a larger number of
children with high functioning ASDs being diagnosed as well as successful
learning strategies that are improving the learning and intellectual trajectory
for these children. Additionally, most educators believe early intervention and
an earlier diagnosis are also reasons for improved intellectual outcome and
decreased additional coexisting intellectual conditions.

A profile of uneven skills is a hallmark of the psycho educational profile of children with
ASDs. They frequently are delayed in some areas yet advanced in others.
Exceptional skills are often seen in the areas of music, memory, calculations or
art. Many of these skills are considered splinter skills and serve no purpose in
terms of day to day activities. With support and training, however, these
interests and skills can provide long term job opportunities if they are
fostered and managed.

In terms of attention children with ASDs show a functional deficiency yet they often have exceptional focusing ability. They may also have remarkable abilities to focus and mine down to specific targets yet overall frequent executive function deficiencies are seen in the areas of selective, shifting and sustained attention.

Children with ASDs often reveal a sensitivity to sound called hyperacusis;but, this is not unique to children with ASDs and is also seen in children with other developmental
disabilities. What is unique, however, is a pattern of over and under reactivity
to stimuli in the same sensory modality. They may be very aware of the sound of
a washing machine yet they show little interest in  a person’s voice.  They may
be very aware of small pieces of lint on a carpet but not notice people entering
or leaving a room. Other examples include a heightened sensitivity to the smooth
tactile sensation of satin on the side of a blanket but an aversion to being
held or hugged. From an opposite direction they may be soother by a firm hug but
agitated when the back or arm are stroked. Similarly oral sensations and
textures that are tolerated, enjoyed or disliked are highly variable. Clothing
is another often described variable sensory response. Some fabrics are more
tolerated than others as is the tightness and tactile character of various
fabrics. The seams on socks and the waistband on pants as well as sleeve length,
pant length and the tightness of shoe laces are all prone to hypersensitivity
and hypo sensitivity.

Lastly, motor patterns are also atypical, uneven and unusual. Delays in motor planning are typical as are poor coordination and deficits in motor planning, motor execution and motor sequencing. These children tend to also have attention profiles that meet the criteria of an associated attention deficit disorder even tough the present DSM-IV-R criteria exclude the diagnosis of ADHD in children with and ASD.

Screening Tools

Pediatricians have many screening tools to detect ASDs in young children. Most
of these tools rely on associated language, cognitive and social delays as well as specific behavior patterns. These screens often do not differentiate children with ASDs from those with other developmental disabilities especially in children younger than 18 months of age. In addition, screening tools are good at screening but tend to be over inclusive. They do not separate out children who have developmental and behavioral disorders from those with ASDs.

Another concern is parent observation. Most of the screening tools rely on parent reporting based on parent observations. Such parent report based tools are brief, practical, inexpensive and are easily administered in the office setting. They do rely on parent observation but this has the benefit of those who have spent the greatest amount of time with the child reporting on the skills and patterns they have observed over an extended period of time.

Screening tools are a fundamental component of a medical home office practice. In a medical home developmental surveillance is provided over an extended period and screening tools are administered to supplement physician observation and developmental history. Such tools are designed to identify children who are at risk of an ASD from the general population. If issues are identified then the child is referred to an Early Intervention Program, a child neurologist, a developmental pediatrician, a psychiatrist, a child psychologist or a developmental clinic for more concise developmental assessments that require more time and training to administer. No matter who evaluates the child the examiner must have appropriate training and expertise. Additional evaluations from an audiologist, a speech-language pathologist and a school psychologist can aid in the evaluation and diagnosis.

Depending on the findings of the developmental assessment specialized screening may be pursued to evaluate genetic or structural central nervous system abnormalities if concerns about an underlying genetic or neurological disorder are present. The greater the intellectual disability the more likely an underlying genetic or neurological disorder will be identified. High resolution genetic testing including high-resolution chromosome analysis by G-banding and molecular testing for fragile X syndrome may be pursued. An EEG should be obtained if their are concerns about episodes of altered level of consciousness, staring spells, seizures or documented language regression in a child over 12 to 24 months of age. For children 12-24 months of age in whom language regression is often seen EEG testing is rarely helpful.

Prognosis in ASDs

Children with autism spectrum disorders (ASDs) have a wide trajectory of developmental outcome. It is especially difficult to determine long term outcome in children under 3 years of age. For children over age 3 years the absence of expressive language, global cognitive delays and a disinterest in social interaction are highly suggestive of long term problems. As a general rule early identification and service provision  associated with educational and community inclusion are the most important factors effecting long term adaptive behavior.

Many children with mild forms of ASDs including those in the past diagnosed as having Pervasive Developmental Disorders not otherwise specified (NOS) and high functioning (HF) Asperger Syndrome (AS) have positive outcomes and develop abilities that allow integrated functioning in school and workplace settings.  The majority of these children, however, continue to display residual signs of social awkwardness, restricted interests and repetitive behaviors and activities.

More impaired outcomes are seen for children with more extensive or severe intellectual disabilities, seizures, associated psychiatric or medical disorders and more severe signs and symptoms of ASD. These children have more difficulty adapting to their surroundings and learning. Those with normal intelligence and minimal autistic symptoms have the greatest chance of transitioning successfully into the adult years.

Genetic prognostic information is difficult to provide due to the wide spectrum of diagnosis. When a broad inclusion is used for children with a diagnosis of an idiopathic ASD there may be a 20-30% risk of having a second child after the first child is diagnosed. If a second child is diagnosed then the risk may increase to 40-50% for the third child.

Intervention

The focus on intervention for children with Autism Spectrum Disorders (ASDs) is
on the developmental transitions from childhood to adulthood and the ability to
initiate, maintain and enhance interpersonal relationships. Although skill sets
and interests change over time the primary goal throughout this life cycle is
the pursuit of a healthy lifestyle in terms of independent living, employment,
social relationships and positive mental health outcomes.

Children with ASDs rarely grow out of the diagnosis. In some situations their functional
improvement and skill acquisition is so successful that general observation
would not raise the concern of an ASD as they reach adulthood. This capability
to “become invisible” is quite rare although with mild cases of ASDs being
identified these positive trajectories may become increasingly common.

The aim of all accommodations and skill set enhancements are to minimize
the core features and associated deficits while at the same time optimizing
functional independence and enhancing overall quality of life. Throughout this
process educational and social opportunities are sought and techniques and
services are utilized to acquire the necessary independence to achieve success
in both the workplace and home settings.

Stress within the family of a child diagnosed as having an ASD is ever present. The focus is on alleviating distress in the family by promoting social and educational development while minimizing maladaptive behaviors that preclude social interaction and workplace success. As always success in job placement will hinge on the ability to provide a match of skill set and interest for a specific job while having a behavioral
profile that does not prevent successful job performance.

The educational service cornerstones are educational interventions with appropriate
accommodations matched with behavioral strategies to instill and accelerate age
and situation appropriate behaviors.These services address academic achievement,
language and communication skills, social reciprocity, daily living skills
including leisure skills and hobbies or play activities and the elimination of
problematic behaviors.

Children with ASDs also must receive appropriate medical care for both health maintenance and ongoing illnesses. They are prone to various disturbances including dietary and gastrointestinal problems as well as sleep disturbances. If associated medical conditions such as seizures or mental health disorders are present then these also must be dealt with in a proactive fashion. Due to inherent language, communication and behavioral difficulties many individuals with ASDs can be easily “missed” in terms of one of the above described problems not being recognized and dealt with by their health care provider. Due to this risk a medical home model should be pursued where the family and the medical provider collaborate in the pursuit and choice of medical services.

Medications can be very helpful to deal with various symptoms but do not cure the core deficits of those with ASDs. Attentional difficulties, mood related disorders, anxiety, sleep disturbances, aggressive or self injurious behaviors (SIB) and oppositional or repetitive behaviors are many of the reasons specific medications are chosen. Medication management must be done in consultation with a health provider experienced in the care of children and adults with ASD.

Educational Services

Initiation of early intervention as soon as the diagnosis of ASD is made is the fundamental principle for children with Autism Spectrum Disorders (ASDs). The level, type and duration of service intervention will depend on your child’s needs. Generally speaking a period of observation will be needed to determine the required services. This may range from intensive 1:1 engagement to a more inclusive group approach. For this entire range of services the key is for all providers involved in the care to be knowledgeable about ASDs and the specific needs of your child.

Objectives must be chosen for every goal that is sought. The focus should be on no more than 2 goals at any given time and a maximum of 2 or 3 objectives for each goal. These goals must be prioritized in a collaborative fashion with the family and pursued in a systematic and developmentally appropriate fashion.

Generally, children with ASDs require more intense observation and general teaching than children who do not have an ASD. Low student to teacher ratios and enhanced instruction times are vital for short and long term success. Family training and integration into service development and provision are also necessary. The use of augmented teaching strategies focusing on visual learning strengths and integrated opportunities for physical activity for mood and behavioral enhancement must be sought. Recognition of any underlying auditory processing disorder and the level of ongoing executive function deficits are also important.

The chosen educational routine must be predictable and consistent over time and place. Necessary skill development must be pursued while providing opportunities for the application of all new learned skills in both the home and outside environments. The program must include ongoing measurement, categorization and documentation of the entire learning process so ongoing adjustments to the curriculum can be made. Skill sets must be evaluated in a number of areas including but not limited to the following: joint attention and gaze, social skills, social reciprocity, imitation, cooperation, play, leisure activities and self initiation of activities and self management of negative or maladaptive behaviors. The elimination of disruptive negative and maladaptive behaviors is especially important. Cognitive skill development should be pursued as long as the intellectual skill profile supports such intervention. Such skills include a self awareness of personal needs and wants as well as the feelings, thoughts, words and actions of others.

Academic readiness skills must be optimized to allow job opportunities to be pursued as interest level and skill set allow. This should be done in an inclusive environment but inclusion should not be pursued if the variability of an inclusive environment poses a threat to short or long terms emotional capability or academic readiness success.

ABA Training

Applied behavior Analysis (ABA) is based on principles of learning theory and is
derived from the principles of experimental psychology relating to increasing and decreasing behavior patterns.  In brief, ABA methods are used to increase desirable adaptive behavior, decrease maladaptive behavior, teach new skills and extend and generalize sought after behaviors to new environments.

The focus of ABA is the collection of data concerning and relating to observable behavior in the home and out of the home. These measures must be reliable and the evaluation of the data objective and unbiased. These behaviors and the settings they occur in are chosen based on a prioritization of individual needs and behaviors balanced with parental desires, needs and capabilities.

Numerous studies have documented the benfits of ABA intervention for children with ASDs. Intensive behavioral intervention and treatment results in major cognitive, language, social and adaptive behavior gains. When the outcome of children who receive these services is compared to those who do not the children who receive the services perform and achieve substantially better for both short and long term outcomes.

One of the many techniques that comprise ABA is discrete trial training (DTT). The focus in DTT is on the teaching of readiness skills to the young child. These readiness
skills include attention, compliance, imitation  and other skills. When DTT is pursued it is imperative that the learned behavior be extended to naturally occurring situations. This generalization is vital since the limited structured teaching environment does not represent typical home or out of home environments. DTT can be especially important, however, for those children who require an initial learning environment that is controlled (C) before progression to a naturalistic (N) and then a spontaneous with mentor (Sm) and eventually a spontaneous environment (CNSmS).

Your behavior therapist is able to increase the generalization of behaviors through the use of incidental teaching and pivotal response training. Incidental teaching is directed at a child’s interests and natural motivation to provide structured learning opportunities. Pivotal response training focuses on motivation and response to multiple cues. By focusing on these “pivotal behaviors” gains can be seen in other behaviors associated with language and social interaction.

Another aspect of behaviorally based treatment of unwanted behaviors is functional behavior analysis. Most problem behaviors serve an adaptive function and are reinforced by their consequences. The purposes include attaining something the child wants. This may be adult attention, a desired object or activity or it may serve as an escape mechanism to avoid an undesired situation or demand. In order to determine the sequence of events data is gathered in a comprehensive fashion to determine the antecedents to the undesired behavior. In this way the problem behavior is identified and described and the antecedents and consequences are determined. All environmental factors that may be effecting the child are determined and then a hypothesis about the motivating function of the behavior is made. The therapist and parents then collect data to test the hypothesis so a decision can be made about how behaviors can be altered. This same process is used to identify antecedents and consequences associated with positive behaviors so the same techniques can be used to accelerate other adaptive behaviors.

Choosing Interventions

As a parent you are constantly confronted with services and therapies for your
child. You pursue informed decisions based on fact but this is often difficult.
You want your child to have the best chance of success and so you look for
proven and innovative educational or medical therapies. This blending of the old
with the new is a challenge for scientists, pediatricians and for parents. Every
parent wants to be part of the first wave of a new successful therapy. You love
your child and desire every opportunity for success. You want to be part of this
discovery process rather than fearful you will be too late. You want to be an
early acquirer not a latecomer.  Do not let this fear overwhelm you or force you
into making unhealthy decisions for yourself, your family and your child. Seek
reasonable and evidence based interventions to avoid unwarranted social,
emotional, financial or physical risk. There are several steps to follow to
accomplish this goal.

Learn to analyze studies and original data in collaboration with a pediatrician and developmental specialist.  The goal to find and initiate innovative care for your child is a fantastic trait. Tend this desire and allow this drive to flourish and grow. By developing and pursuing a collaborative relationship with your pediatrician and other specialists you will position yourself to find the best care for your child. You can be a part of the
discovery process. Your first step is to find a pediatrician you are comfortable
with. A pediatrician who listens and responds to your questions with compassion,
care and understanding. Parents often ask how will I know if I am seeing the
right person? The answer is simple. If your pediatrician listens and is willing
to collaborate with you to find the right answers for you and your child you
will both succeed.

The next step is to learn how to evaluate studies and reports. There are various levels of evidence. Parents will often hear the term evidence based. Unfortunately, there are many levels of evidence based interventions. The lowest level is based on expert opinion and the highest is a high quality meta-analyses with a systematic review of randomised control studies or randomised control studies with a very low risk of bias. The key words here are expert opinion and bias. Beware of expert statements without
documentation of the data upon which the opinion is based. Similarly, always
look for bias which can skew the results of any study. Finally, there must there
be a clear link between cause and effect and the methodology used to measure the
outcome and results of the study must be free of personal interpretation.  It is
vital for all results to support a causal relationship between what is being
recommended and what problem is being studied.

Many case control or cohort studies have a high risk of bias and an associated risk that the relationship being studied is not causal. This can cause the findings to be
inaccurate.  Intervention options that document comparison studies providing a
systematic review and statistical analysis limit the chance of inaccurate or
misleading results and recommendations. As a parent seek treatments that are
supported by a body of evidence that meet the above criteria and are directly
applicable to the same target population and show an overall consistency of
results.

Diagnostic Criteria

The core diagnostic criteria for the diagnosis of autism spectrum disorders
(ASDs) are best described by a triad of impairments. These impairments concern
social development, language and communication and thought and behavior. As more
is learned about ASDs our understanding improves. The research being performed
daily not only helps us to determine the best intervention but also allows us to
understand how to categorize the many types of ASDs and in so doing allow you as
parent to receive the best advice possible.

An awareness of the above impairments must be linked to appropriate screening and surveillance by your pediatrician. Early detection and diagnosis are vital for short and long term success. This is accomplished through a collaboration between all involved in
the care of your child. This health partnership is the key to early recognition
of deficits in the above areas.

Children with social impairments have atypical patterns of social development. This is especially seen in the areas of interpersonal recognition and interaction. Language and communication deficits may be verbal or non-verbal and may involve higher level pragmatic language skills. Thought and behavior deficits revolve about a lack of age appropriate social awareness and imagination. In its place other patterns of play are
substituted including highly ritualized or repetitive patterns.

Common communication impairments include abnormalities of language development
including a lack of speech, inappropriate prosody or musicality of speech,
echolalia, inappropriate pronoun use, atypical vocabulary use or a preference to
discuss certain topics excessively. Social Impairments include an inability to
participate in age appropriate play, a lack of awareness or recognition of age
appropriate norms, a lack of recognition for criticism or the intent purpose or
meaning of the comments of others, a tendency to be overwhelmed in social
situations, a lack of age appropriate adult interactions and a tendency to show
extreme behavioral responses when confronted with an uncontrolled or unexpected
social situation. Impairments of interests, behaviors and activities  include a
rigidity of action and a lack of flexibility where certain behaviors or actions
must be performed in a certain way,  primary deficits in organizational and
executive function skills and a general lack of performance of age appropriate
activities when forced to cope with change or unstructured situations.

Hallmarks of ASDs at Various Ages

The warning signs change with age. Since children pass through numerous developmental stages and skill sets as they age it is important to look at warning signs in terms of the age of the child. The most common age ranges are infant to preschool, school age and young adult years. A previous blog entry focused on the first signs of autism. This entry will focus on the appearance of autism over a developmental continuum.

For infants under age 1 year they may have difficulty with self soothing and appear irritable and unable to regulate themselves. They also may be distant and not respond to being looked at, touched or hugged.  For the preschool child there generally is a delay in language although in children who are eventually diagnosed with Aspergers Syndrome there is usually normal early language milestones. Language reciprocity is lacking in terms of joint attention (pointing or looking at an object to direct another person to look at it) and turn taking. Often gaze will be distant and it appears the child is looking through people and not looking at the face and eyes of the person they are interacting with. Shared pleasure is lacking as are the qualitative patterns of non-verbal communication. Gaze may be peculiar in the angles chosen to look at objects as well as the monitoring of gaze with certain objects being stared at for extended periods. Repetitive mannerisms including finger movements and hand flapping may be present as is a lack of interest in initiating social interaction with peers. Pretend play is lacking as is imitation and imagination. Finally, patterns of over reactivity or under reactivity to sensory stimuli or events are often present.

For the school age child patterns are often much more visible and evident. They continue to be rigid and inflexible in their interactions with others. When encountering new physical environment they seem uncomfortable and unsettled often standing at the periphery or against a wall.They have difficulty joining into play routines with others and are often frustrated when peers do not want to engage in an activity they way they want. They tend to be bossy and want to be in control. Their awareness to expected behavior for the classroom or playground makes them appear to be uncooperative and unwilling to listen to the directions of others and at the same time are often overwhelmed by social situations. They can become upset if their social space is breached or if they are hurried. Language issues include unusual vocabulary for age as well as frequently having strong or extensive interests or knowledge about specific topics. Speech musicality is absent and echolalia of word or topic is often present. Overall the use of language for social interaction and communication is limited.

For the young adult patterns may be very elusive and difficult to quantify for the high functioning individual without a learning disability.  Issues with social behaviors and communication continue as do responses that appear naive or lacking of common sense. Although academic skills may be advanced for age there is a deficiency in social intelligence and the ability to perceive the intent, purpose and meaning of others. In conversations they may direct the discussion with little regard to what the other person is saying and they may show extensive knowledge about various topics. Speech quality may be unmodulated, repetitive and flat and certain phrases may be used repetitively. Understanding of metaphors, humor and sarcasm is often lacking as language is interpreted in a literal or concrete fashion. Body language and facial expression  including eye contact and gestures are often inappropriate as is general social interaction and the ability to initiate and maintain friendships. Finally there is often an interest in keeping routines the same with a reliance on rituals and other repetitive behaviors while having a limited ability to utilize imagination and executive function skills for future planning.