Educational Services

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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

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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

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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

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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

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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.

Medical Testing

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Numerous medical tests and evaluations can be performed on a child with abnormal
development patterns. As the parent you must ask the right questions in order to determine which tests are necessary. Most of the tests are performed to look for a cause of the developmental delay or atypical developmental patterns. Other reasons include excluding treatable conditions and identifying associated so called co morbid conditions. Rarely are tests needed to provide baseline information before treatment is initiated. It is important, however, for all necessary medical evaluations to be performed. Never assume a medical condition is simply due to the ASD.

Less than 10% of children diagnosed as having an ASD have an identifiable cause such as Fragile X Syndrome, tuberous sclerosis, metabolic disorders or Rett Disorder. Testing for these disorders should be based on history and clinical exam. Special attention should be given to the neurological exam and any dysmorphic physical features. There is no evidence children with ASDs have a primary immune disorder.

Neuroimaging studies and extensive metabolic testing are rarely required. Generally, motor or vocal tics, stereotypies (hand flapping) and clumsiness do not need specific
testing. By observation vision and hearing problems are difficult to recognize and actual vision and hearing testing are often difficult to perform in a child with an ASD. Consequently, this testing should always be considered and be performed by a professional familiar and comfortable testing children with an ASD diagnosis.

Children with autism spectrum disorders (ASDs) and children with learning disabilities have higher rates of epilepsy, vision impairment and hearing impairment than other children. If your child has regression of language after age 3 years an EEG is needed to assess for seizure activity being the cause of language regression. If there are episodes of staring off and your child does not respond to your voice or touch then an EEG will be considered. It is important to determine whether your child is avoiding eye contact and over focused on some stimuli in the environment. If that is the case then an EEG is not needed.

Children with ASDs have increased rates of mental health problems including attention, depression and anxiety. Psychiatry or psychology evaluations are needed if the complaints are causing social, emotional, educational or physical dysfunction.

Other common medical issues include unrecognized esophageal reflux (GER), sleep
disturbances and constipation. Although there is a prominent history of selective food intake there is not an associated allergy or food sensitivity risk. Sleep issues can be extremely disruptive to families, siblings and parents. Issues with falling asleep (sleep latency) and staying asleep (interval waking) must be carefully addressed. Melatonin or clonidine are often very helpful when combined with sleep cuing and behavioral strategies.

The key is for you to collaborate with your pediatrician and developmental specialist to
obtain a detailed historical assessment and look for any associated co-morbid problems. Testing should never be performed in a rote fashion. Every child is different.

Prognosis and Adult Transition

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The ability to have reciprocal language interaction with others involving both receptive and expressive skills and an interest in social interaction are the prime indicators for long term successful outcome. Children with minimal learning and achievement issues have the best outcomes in terms of success in school and transitioning into adulthood. High IQ and language skills suggest future success as adults in terms of communication and social competency. These two skills are fundamental to finding the right jobs and appropriate loving relationships. as a parent, your greatest fear is that you will not always be around to care for your child. By looking at and preparing for the future your child will be ready to assume self care. Certainly some children and adults with ASDs require more support than others. Yet, the same strategies are needed for both.

The ability to initiate and maintain relationships is fundamental to long term success and overall happiness. Children who desire social contact yet are unable to do so tend to have long term social and emotional issues in the home and in the workplace. They tend to become frustrated, anxious and loose interest in making attachments to others.

Maladaptive behaviors that cause social and behavioral stress are also associated with less successful outcomes. If the child to adult transition is made more difficult by acting out or self injurious behaviors then compliance and job performance will be hindered and opportunities for employment will be limited.

The key is to identify and leverage skill sets and interests into  job opportunities. Look for skills and interests  even at young ages that will allow your child to find a job and allow successful transition into the adulthood. The right job placement will provide them the satisfaction and ability to pursue and hopefully achieve responsibility for their own care. Read the Wall Street Journal every week and scrapbook any information about job opportunities. Network with friends, neighbors, associates and coworkers. Ask them for job opportunity ideas and seek an entrepreneurial opportunity where you could start a business your child would be able to thrive in. Find out what inspires your child. What is he passionate about? His greatest chance for success is finding and performing a job that provides him social and financial opportunity as well as emotional support and satisfaction. This will make the transition to adulthood exciting, rewarding and less fearful for both of you.

Social Skills in ASDs

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The development of social skills begins before age one year when social orienting begins. When your newborn looks at you and makes eye contact and smiles in an interactive fashion she is orienting to you. From birth to age one she awakens to her own thoughts and desires and makes the statement “I am.” From age one to three she realizes her actions bring about change. She realizes “she can” change the world. When a child under age one looks at an object and then back at her mother and then back at the object she is asking her mother to look at the object. This is joint attention. Joint attention is one of the hallmarks that predicts social language development. As a child progresses into pre-school, school age and young adult years social language development accelerates. Imitation is followed by the ability to regulate social interaction. The ability to have negative as well as positive affect on others is recognized, as is the power of expressions and the use of gestures. Social skills progress and the ability to play becomes part of her social skills.  Her play is flexible, appropriate and has a variety of action and expression. Children with ASDs are limited in this social skill progression.

For all children you can increase joint attention and social reciprocity by integrating activities into your daytime schedule that require these skills. In this way the teaching of these skills will become part of your daily routine. The foundation skills are the abilities to give, take and share. These turn taking skills are the hallmarks of cooperative play and social awareness.

The desire and ability to take turns in individual and then group settings is taken for granted. Children with ASDs have difficulty performing reciprocal interactions and this hinders their turn taking skills. Although there are some similarities between shy children who are often along the sidelines during activities there is much that is dissimilar. Shy children due to lack of practice and general disinterest may lag in social skills but generally they know how to initiate and maintain contact with others. Shyness causes children to make a decision not to pursue contact due to emotional hesitation and fear. Children with ASDs, on the other hand, are not aware of the social skills necessary and often are inept and not interest in pursuing them not out of emotional hesitancy but rather due to a lack of social awareness, knowledge and interest. In addition, children with ASDs are often placed in social situations where others make them feel uncomfortable. This may be a planned discomfort as is seen with bullying behavior or undirected discomfort when they interact with someone unaware of their developmental disorder who responds in a negative fashion. These experiences condition the child with ASD to be wary and disinterested in social interaction and social skill development lags further behind. This is why during social skill training direct attention must be given to your child and any secondary negative emotional responses must be addressed and resolved. Choose a social skill curriculum that is supported by your child’s learning style and interests. Most children with ASDs are better at visual learning than auditory learning. Try to use lessons that have a visual component such as cartooning or the use of inanimate objects to provide prompts on body positioning and orienting.  Visual cuing, modeling, scripts, games, social stories, and any peer mediated leisure or play experience that requires shared interest and attention are very useful.

School sponsored social groups integrated into the school day and private social skill groups are helpful in providing controlled and naturalistic environments to learn skills that will be needed for future spontaneous experiences. As always, success is found in practice. Rarely will skills suddenly appear. Hard work and the effort of all who are involved with the care of your child are needed if success is to be found.

 

Medication Interventions

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Medication is prescribed for specific symptom management. Baseline symptom data collection is necessary before medication is started and targets need to be chosen so potential benefits can be documented. The use of medication in a child or young adult with an ASD is done in conjunction with social, environmental and educational accommodations as well as behavioral strategies. This combined approach is essential for the best outcome. Although medications have been used with variable success for many years there are no long term controlled studies involving large numbers of children. The decision to begin, stop or continue medication is is made during a collaboration between parents and the specialist prescribing the medication. Emphasis is given to associated medical conditions or mental health disturbances that also require medication.

The collaborative process to decide on medication is based on an assessment of the risks and benefits. The opinion and preferences of caregivers in both home , out of home and school settings must be considered but the final decision is always from the parents. Environmental accommodations that could increase or complement medication success should also be pursued.

Every medication has potential side effects.These must be discussed openly and monitoring options must be identified and agreed upon. Duration of therapy, dosage and treatment schedules must also be determined. At all times the focus must be on how success or failure will be measured and what the trial period will be. Doctors with appropriate training and experience in the use of medication in ASDs should lead this process.

The most common prescribed medication is a methyphenidate preparation. These include ritalin, Concerta, Metadate CD, Daytrana, and Focalin. These product have different durations and peak level profiles and some must be swallowed without chewing. These medication reduce motor restlessness and hyperactivity and increase attention. Another stimulant medication called Adderal is also used but information on response is less extensive and there is some experts believe there is a higher rate of side effects including irritability, mood lability and sleep disturbance. A test dose should always be used and toleration monitored in terms of side effects. Children with ASDs are more prone to the above described side effects then children with ADHD who are treated with stimulant medication.

Risperidol (Risperidone) is another commonly prescribed medication. Benefits include a decrease in irritability, aggression and self injurious behaviors. It can be especially beneficial for children with severe tantrums or self injurious behaviors (SIB). Repetitive behaviors including stereotyped behaviors(stereotypies) are also frequently reduced. It does not increase appropriate social behaviors but it does often decrease inappropriate social behaviors and provides the opportunity for traditional behavioral strategies to substitute a new appropriate behavior. The most common side effects are tiredness, increased appetite and weight gain. There appear to be no significant liver effects.

Melatonin is often used to improve sleep pattern in children with ASDs by decreasing sleep latency (SL). It is well tolerated and is given 1 hour before bedtime. It comes in a rapid dissolving pill form and can be purchased without a prescription. Baseline sleep data in terms of when your child is placed in bed, when they fall asleep and when they wake during the night or in the morning should be obtained prior to beginning the medication. Behavioral strategies and sleep cuing techniques should always be used first before medication is tried or in conjunction with the medication depending on the severity of the sleep disturbance.

Serotonin re: uptake inhibitor medications have also been used if symptoms of anxiety, mood or other repetitive patterns including obsessive-compulsive symptoms warranted their trial. In these situations an associated mental health problem (co morbid) is being treated. As a parent be cautious about observational reports of benefits from medication. Strong evidence based research is often limited for the use of medications in ASDs.

Diets and Nutritional Support

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Parents of children with ASDs often hear about the benefits many parents have
discovered when their child is placed on a nutritional intervention such as
casein, whey and gluten exclusion diets. Observational reports include a
decrease in negative behaviors, improved language skills, improved attention
or a decrease in repetitive or self injurious behaviors.

Such nutritional interventions can be difficult for a family to pursue. Parents with ASD children are busier and more financially stressed then families without ASD children.
Consequently, such interventions should be considered carefully. Nutritional and
biomedical interventions have not been proven to significantly improve outcome
in children with ASDs. There is extensive observational information from many
parents and professionals who deal with children with ASDs to support their use.
Numerous books have been written and interviews have been given. Strong
methadological studies, however, have not proven the benefits. The key is to
make an informed decision and choose your targeted behavior carefully. The risk
of a placebo effect must always be considered and if the risk is minimal there
is no reason a trial cannot be pursued if response is carefully documented.

Gastrointestinal problems or issues related to children with ASDs having extreme food selectivity should be dealt with as they would for a child without an ASD. Vitamin, mineral, caloric and protein supplementation must be pursued if there is inadequate recommended intake for age or if your child is not meeting expected growth parameters.