By: Dr. Joe Barber
Text copyright © 2016 Joseph C. Barber, MD, FAAP
All Rights Reserved
Every day I explain to parents why their child has an autism spectrum disorder and how the diagnosis will change their life and the life of their child. I see the uncertainty, bewilderment and fear in their eyes. I answer questions about services, expectations and outcomes. I provide support but mostly I listen and help in any way I can.
Although we do not know what causes autism spectrum disorders we know we can help every child and adult who has autism. I have written this guide to help those exposed to autism directly or indirectly understand what it means to be autistic and how we can and must provide educational, social, behavioral and wellness services to every individual with an autism spectrum disorder.
Please share this guide with everyone touched by your child and especially with your friends and family. It is my gift to you and was given to me by your child.
Table of Contents
Autism is a common complex neurobiological disorder with a wide spectrum of presentations, a strong familial genetic pattern and an uncertain cause. Family history is very important as is making sure there are no hearing or vision problems.
Published statistics for the prevalence of autism continue to increase. The most recent statistics suggest prevalence to be between 1 in 68 and 1 in 40 for school-aged children. The cause of this increase in prevalence is uncertain. Likely, an increased awareness about autism and improved diagnostic capabilities has led to the prevalence increases. Autism is a major global concern that is not limited by geography, culture or ethnicity. It is found much more commonly in boys than girls (5 times more common in boys than girls) but it is felt many girls with autism are underdiagnosed due to relative sparing of social and communication skills. Children from socio-economic groups who have limited access to medical, educational and developmental services also have a lower prevalence due to missed diagnosis.
Children and adults with autism have core deficits in communication, social skills and typical behaviors. The reactivity and regulation difficulty that accompany these deficits often lead to behavioral challenges for both the individual with autism and the family.
About one-third of children and adults who are diagnosed with autism also have an intellectual disability. Two-thirds have normal to above average intellectual skills and very high functioning capabilities are seen in many individuals with autism.
Three primary deficit areas include social reciprocity, language and repetitive patterns of behavior, activity or interests. Patterns of interest include unique or unusual fascinations, excessive attachment to objects, sensory aversions to sounds, food and clothing and repetitive motor activity such as hand flapping or running or spinning in circles.
Skills that suggest your child does not have autism include reciprocal smiling by 2 months, laughing and giggling by 5 months and name response by 12 months. Reassuring social skills include eye contact during early infancy, playing peek-a-boo by age 9 months and the ability to copy your gestures such as waving, clapping and pointing by 12 months and waving bye-bye by 15 months of age. For toddlers an interest in imitating you is also a sign of normal development. The ability to share focus and attention by pointing at objects prior to 18 months is another reassuring skill. Remember, all infants and children are different and it is best to not over compare developmental milestones in children. If you have doubts about your child’s development you should talk to your pediatrician.
Autism traits vary with age. For infants and toddlers irritability and a lack of social interaction interests are common. Delays in language, shared gaze and interest or pleasure are the most common complaints. Excessive, unusual, unique, peculiar or repetitive behaviors, activities and interests are also common. For the school-aged child, a delayed ability to connect with others and a rigid and inflexible behavior pattern is the most common historical complaint. Social issues include being overly bossy, a lack of interest in being with people or preferring isolation. Language delay and abnormal language patterns such as word or phrase repetition, repetitive questioning and unusual speech tonality are the most common language difficulties. For teens and adults difficulty with social relationships, shared social interests, communication, rigidity, a lack of social cue awareness and executive function disturbances are the most common signs.
A close relationship with your pediatrician and participation in appropriate developmental surveillance are the most important ways to assure an early diagnosis of autism is made. You and your pediatrician are in the perfect vantage point to collaborate in the early diagnosis. There have been numerous published reports about the early signs of autism. The key is for both of you to take the time to look for the signs of autism, know what these signs are and have a strategy to systematically evaluate the developmental trajectory of your child. This, however, is the easy part. The hard part is being aware of available regional community, educational and medical resources and then collaborating with your pediatrician to pursue and obtaining the services you and your child require.
Key signs relate to atypical language development and social deficits that include delayed or absent joint attention (JA). These children appear to lack connectedness. They are often content being alone and show decreased eye contact. They initiate and maintain social contact with gestures, vocalization and eye contact less than expected for age and have difficulty sharing emotional contact with others in play or group activities. Joint attention delays are frequently seen in infants less than one year of age who do not show enjoyment from looking back and forth in a sharing fashion between a person and a joint object of interest. By age one year most children with prompts will look in the direction that their parent points and will then look back to the parent with a shared expression.
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 High Functioning Autism 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
By 15 months most children will point to request a desired object and soon thereafter will point to share a joint object of interest. While pointing the child will look back and forth between the object of interest and the parent showing a shared social experience. This sharing is often absent in children with ASD. The absence of joint attention effects language development and the “showing” of positive affect and social connectedness. The ability to attend and turn to a person who calls your name is often deficient in toddlers with ASDs and in children with hearing impairment. This is why hearing testing is necessary.
By preschool, inappropriate peer and social interactions are present. Preschool interests are limited and usually specific to that child. These children have difficulty understanding the context of situations and events and the perspective of others. This makes it even more difficult for children with ASDs to sense the “big picture” and engage in appropriate social interactions. This leads to limitation in the ability to perceive the intent, purpose and meaning of others as well as the ability to sense and respond appropriately to humorous situations or comments.
The warning signs of autism 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 the school age child patterns are often much more visible and evident. They continue to be rigid and inflexible in their interactions with others. Transition and change make lead to discomfort and results in these children acting unsettled. They often separate themselves from social interactions and stand at the periphery or engage in an activity separate and apart from the group. They have difficulty joining into play routines with others and are often frustrated when peers do not want to engage in an activity and tend to be disengaged or 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 is often impaired and the repeating of words and phrases is often present.
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.
Quality of Life
For children and adults with autism an inspired quality of life is essential. For this to be achieved physical, psychological, social, spiritual and practical living and leisure components must be recognized, understood and addressed. The focus must be on optimizing communication skills, the ability to live in a community, the learning of functional skills that support employment and group engagement and elimination of behavioral challenges that lead to self-injury or inhibit family and community functioning.
Quality of life is determined by the person with autism and not by you. Safety, legal and health issues must be identified and solved but the focus must be on the perspective of the individual with autism rather than your perspective.
The role of the community is to be supportive, available and non-judgmental. Early identification and acceptance are essential as is the provision of all reasonable and non-restrictive services that open the doors of opportunity for the persons of all ages with autism.
For the person with autism quality of life support must include personal and social opportunities that allow and foster the initiation and maintenance of relationships with individuals and with the community. Environmental and financial supports are also essential and must be individualized and reassessed on an ongoing basis.
An inspired quality of life focuses on strengths rather than difficulties. It must be skill and interest based rather than deficit dependent and must provide opportunities for the individual with autism to live, work and create as a member of a family and a community. The availability and access to leisure fun activities and everyday living opportunities such as shopping and transportation must be a priority. Intellectual disability and deficits of reactivity and regulation that are often the cause of behavioral challenges must be dealt with. Access to and participation in medical care that responds to both physical and mental health issues must also be integrated into the daily life of those with autism.
A quality of life balance can only be achieved if job opportunities, day care, group home and supportive training programs are available that allow a matching of needs, skill sets and interests. The avoidance of high risk situations that lead to cumulative stress and behavioral reactivity and challenges is essential as is an awareness of organizational skill deficits and sensory sensitivity.
An inspired quality of life is the dream of every parent whose child is diagnosed with autism. It is your role and the role of every community member to help every person with autism find an inspired quality of life.
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 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 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 High Functioning Autism (HFA) often show an interest in various topics and fact gathering. Rather than simply playing with a toy car they may also show detailed knowledge about specific car types and car specifications. These 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 become upset and rapidly escalate into a prolonged temper tantrum with associated aggressive or self-injurious behavior.
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 and change. Anxiety and communication difficulty further aggravate negative emotions and behaviors. Fatigue, illness, pain and sleep deprivation accelerate stereotypies and self-injurious behavior. These types of behaviors make it difficult to integrate these children into mainstream educational activities.
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.
For many years when people spoke about autism they talked about a group of disorders called Pervasive Developmental Disorders. This category of disorders included Autism, Asperger Syndrome, Childhood Disintegrative Disorder, Rett Syndrome and Pervasive Developmental Disorders (Not Otherwise Specified). These are the categories identified in the Diagnostic Statistical Manual of Mental Disorders, Fourth Edition (Text Revision) DSM-IV-TR.
This diagnosis has been revised in the Diagnostic Manual of Mental Disorders, Fifth Edition (DSM-5.) Children with a diagnosis of autism must show severe deficits in social communication and repetitive patterns of behaviors, interests and activity. Language delay is no longer a core deficit.
The aim of the new criteria is to use recent advances in the areas of brain research, genetics and the general understanding of child development and behavior to make the study of ASD’s more understandable. These criteria make the core concepts that identify a child with an ASD clearer. This manual is presently being rewritten and a Fifth Edition is to be published in the near future. Categories and names are certain to change, but, the underlying disorders will not. A new emphasis on the spectrum of presentation will likely be the focus. Underlying disorders that have autistic like features will be excluded and a new attention will be placed on children with social communication disorders.
The purpose of any diagnostic categorization is to facilitate treatment and understanding. Those writing and formulating the new edition are pursuing this goal. The intent is to allow each child with a spectrum disorder to be better understood and enhance our understanding of their developmental trajectory.
These changes do not alter underlying patterns seen in children with ASDs. These patterns fall into three basic categories. The first concerns social reciprocity and the ability to recognize, understand and respond to the intent, purpose and meaning of others. These second issue concerns central coherence. Children with ASDs tend to be over-focused and fixated on specific patterns of behaviors or responses. They lack the density and depth of appropriate qualitative responses expressed by neuro-typical children. They often miss “the big picture,” and have difficulty generalizing their responses from one situation to another. The third area concerns executive function and auditory processing deficits and impaired selective, shifting and a sustained attention.
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. Complex karyotype testing including microarray testing can sometimes be helpful. 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 problems.
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 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.
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 methylphenidate preparation. These include ritalin, Concerta, Metadate CD, Daytrana, and Focalin. These products have different durations and peak level profiles and some must be swallowed without chewing. These medications 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 are some experts who 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.
Risperdal (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.
The first step in autism treatment is identification. Look for the common signs of autism and talk to your pediatrician. Make sure screening is done by your doctor at your child’s 18 month and 24 month visits. Treatment and intervention can only begin after a diagnosis is made. The average age of diagnosis is after age 4 years yet present screens that can be performed by you at home or in your pediatrician’s office have the capability to identify children under age 2 years.
Once you have a concern the next step is a comprehensive medical evaluation and vision and hearing testing. Make certain your child is tested by a professional who has the skills to test young children and children with behavioral or developmental problems. Further developmental testing by Early Intervention, a Child Neurologist or a Developmental Pediatrician should then be pursued. This allows individualized testing to be obtained based on your child’s examination and history. Such testing may include specialized laboratory testing and neurological testing.
Intervention must include services to respond to the social, emotional, educational and physical needs of your child. All services must be supportive of your whole family and must respect personal, religious, cultural and ethnic preferences.
The most common intervention includes child focused intensive behavioral intervention that is also family supportive. Services must be provided both in and out of home and include parent and caregiver training. The purpose of all services is to provide intensive and child specific intervention that supports community and in home functioning. Specific attention must be directed to behavioral challenges that commonly exist and a focus on age specific group integration that is provided under the supervision of a highly trained individual.
Services should be evidenced based and provide outcome information to aid parents in choosing services. These services must be highly structured, individualized and include positive reinforcement while avoiding negative reinforcement. Service ratios are very important and in the initial treatment phase 1:1 supervision is often required if there is to be success in transitioning from a controlled to a naturalistic environment both in and out of the home.
Parent education and support services must also be part of the treatment program. The focus must be on fostering collaboration between everyone involved in the care of the child or adult and identifying and pursuing reasonable and non-restrictive strategies that “work.” Connections and networking with available community services and the development of unavailable necessary community services are also essential if the transition from child to adult care is to be successful.
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. 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. 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 randomized control studies or randomized 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. 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.
Speech delay is often the presenting complaint for children who are diagnosed as having an autism spectrum disorder (ASD). Babbling may be late in developing as are pre-speech gestures including waving, pointing and showing.
The lack of a desire to communicate and the lack of non-verbal communication strategies including gestures usually accompany the speech delay. These children frequently do not show frustration due to their speech delay. In addition, the quality of speech may be concrete, rigid and even scripted. They may memorize dialog from movies or television shows and the repetition of another’s words, called echolalia, is often seen.
Children with ASDs may appear independent due to their lack of communication interest. They often seek out an object of interest rather than using language to acquire the object. Some children may also show advanced skills in specific language areas including the labeling of colors, shapes, numbers and even letters of the alphabet. Associated with this advanced skill is a relative lack of the incorporation of these same skills into functional language.
Some children with ASDs may also use pop up words that are said without a clear provocation. They may be said frequently for a period of time and then stop as suddenly as they started only to return in the future. They are said out of context and often occur during stressful situations.
Children with ASDs often lack warm expressions during communication and lack an alternating communication pattern that is usually seen between mother and child by 6 months of age. Infants with ASDs will often vocalize without regard to a parents gaze or speech and may not preferentially recognize a parent’s voice. They often disregard vocalizations but appear to be extremely aware of environmental sounds that other children miss. Other patterns include a lack of expressive language and deficits in higher level semantic and pragmatic language skills that indicate a social use of language. Children with ASDs may have difficulty differentiating between the various ways specific phrases can be said to indicate different emotional meanings.
Regression is a common language pattern. Children with ASDs often say a few words and then stop speaking. This is often seen between 18 and 24 months of age. This communication regression also may include a loss of gestural communication including pointing and waving and social skills such as eye contact and response to praise. This regression may be sudden or gradual and may be confused with other environmental or developmental factors. The presence of language regression is a key hallmark of ASDs.
Children with Asperger Syndrome may have limited or minimal speech delay. This makes diagnosis difficult and often delays the diagnosis. Although the quantity of speech may be near normal the quality is abnormal. They may show an interest in discussing specific topics of personal interest yet have difficulty expressing simple feelings or recognizing the feelings and viewpoints of others. Speech patterns may be overly formal and lack a reciprocal quality. Conversations are difficult to sustain and the language often is odd, self-centered, off topic and monotone. Unique patterns of speech in terms of intonation, volume, rhythm and pitch are often heard. While communicating there is often a disregard for personal space and a disregard for the listener’s needs.
A discussion of the feelings, thoughts, words and opinions of others is also deficient. An inability to determine and measure the conversational intent of others is universal. Words and phrases of ambiguous meaning are difficult to understand. This makes the understanding of humor, idioms, jokes and irony difficult.
Children with ASD show various trajectories for the above communication deficits. As a child with an ASD ages, he may acquire communication skills that were lacking in his youth. Every child and adult with an ASD is unique and may show all or some of the above patterns.
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.
Social awkwardness causes the child with ASD to be wary and disinterested in social interaction and leads to further social skill delay. Choose a social skill curriculum that is supported by your child’s learning style and interests. Look for signs of frustration, anger and avoidance. 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.
Initiation of early intervention as soon as the diagnosis of ASD is made is the fundamental education 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.
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 benefits 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 © 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. Common 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 affecting the child must be taken into account 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 adaptive behaviors.
Children with autism spectrum disorders (ASDs) have a wide range of speech capabilities. This can range from little or no expressive language to highly developed language skills with some associated pragmatic language impairments. As a parent you are in the best position to work with your child to improve attention, communication interest and language skills and intent. This is done in conjunction with a Speech Language Pathologist (SLP) and is incorporated into home and school settings.
Individual and group support is determined by the needs and capabilities of each child. Some children with ASDs are overwhelmed by sensory and environmental stimuli and respond best to small or individual settings. The focus is on the integration, acceleration and expansion of imitation and social communication. Treatment by a speech-language pathologist is appropriate for all children with an ASD. Useful or communicative speech can be achieved by most children with ASDs. No child should be excluded due to age, lack of prior speech service gains, lack of prerequisite skills, or low IQ scores. The focus must be on services based on intense close collaboration and subsequent extension to group intervention for social skill training when appropriate. Traditional pull out services are often ineffective due to the lack of frequency, intensity and the limited environmental integration of services to natural settings throughout the day. Training for parents, teachers, peers and all caretakers must be integrated into the speech services. The goal is to promote functional communication in natural settings both in and out of the home.
Augmentative communication strategies can be very effective in increasing functional communication. This often involves a Picture Exchange Communication System (PECS) and the use of gestures, signs and alternative communication techniques. Find the type of interaction your child enjoys and prefers and utilize it to facilitate communication. Initially the communication may be unidirectional about what your child wants but the goal is reciprocal communication where there is sharing of feelings, thoughts, words and actions. Augmentative strategies do not hinder the long or short term ability to talk. By increasing symbolic language they increase future ability to speak and communicate.
When someone talks about executive function skills they are describing a wide range of cognitive abilities that include both planning and plan execution. Selective, shifting and sustained attention as well as the appropriate sequence of task completion and the inhibition of competing inappropriate responses are essential. These skills are often described as being frontal lobe in origin and related to the cognitive deficits seen in someone who has experienced a brain injury. These types of brain injuries to the frontal lobes are common and result from the twisting and shearing of fibers within the brain. Many of these symptoms are the same symptoms described in a post-concussive brain injury.
Common problems include difficulty with insight and problem discrimination, project planning and realistic expectation setting. It is clear difficulties with one or all of these issues hinder thinking skills and the ability to identify and respond to social cues while initiating and maintaining relationships.
The training of working memory which is the term used to describe our ability to mentally manage and update information is the foundation for executive function training. Intervention options include educational approaches that focus on a staged, step by step scaffolding approach which slows down problem solving and decision making into component parts to encourage appropriate information assessment. Other training techniques include training that includes dual task completion and the use of reasoning skills to extract essential decision making details.
Difficulty with social awareness and an understanding of the thoughts, words, needs and actions of others are common executive function deficits. In our daily lives we need to decode the social intentions of others. An inability to do so can lead to poor decision making and social disasters. The use of the same techniques discussed above can lead to improvement in social decision making and an awareness of the emotional intent of others. An understanding of contextual emotions is vital for the understanding that provides a bridge to develop relationships.
Executive function disturbances increase with fatigue, time pressure demands and distraction. The need to incorporate an awareness of these stressors into every child’s educational program is essential for behavioral and educational programs to be successful.
Children with Autism Spectrum Disorders (ASDs) have delayed pretend play skills. They also have two unique patterns of play. These are called sensory-motor and ritualistic play. Sensory motor play involves a combination of sensory and motor based activities. Examples include mouthing or twirling objects, tapping or banging objects or manipulating and touching objects in repetitive, ritualistic and stereotypical fashions. Children with more severe forms of ASDs who are nonverbal may have more of these patterns and behaviors then children who are high functioning (HF).
The overall play pattern of children with ASDs is repetitive and lacks the creativity and imagination seen in age appropriate play. Children with ASDs often line up toys, cars or other characters and recognize and become upset if the objects are moved. They may stack blocks in a sorted fashion by shape or color and may look at the constructions from various angles including out of the corner of their eyes. Often they are fascinated and fixated by movement patterns including the spinning of wheels or fans. They may repetitively open and close doors or cabinets and become upset if a door is left ajar. Rather than coloring with pencils or crayons they may repetitively line them up or spin and flick them back and forth.
Children with ASDs often prefer to play with common objects they find around the house rather than age appropriate toys and are able to spend expended periods playing with simple objects peers their age are bored with. Their play can be described as constructive involving blocks, computer games or puzzles or ritualistic where objects are sorted, matched or lined up. They often mix either of the above play patterns with sensory-motor play consisting of spinning, flicking, mouthing or banging a hand held object while performing another play activity. Their motor skill to accomplish this dual play is often quite amazing. While playing they often interrupt play to jump, run or spin while making repetitive vocalizations. Games of chase or roughhousing including wrestling or playing lap games are often preferred but the social aspects of these activities are of less importance and interest. The body movement during these activities appears to be the fascination as are other sensory-motor aspects of play.
Visual play includes watching certain videos, video games or television shows over and over and often reveals a high skill level when completing puzzles or mastering video game levels. Certain topics are common aspects of fascination. These include trains, trucks and shape matching puzzles. Water and water play are often a fascination. Parents often report an advanced visual memory for car directions and recognition of any changes in the house layout including furniture or toys being reorganized.
The above play activities can persist for extended periods or change suddenly and be replaced by new patterns. Past patterns can suddenly return only to be lost again. Group activities where cooperation and the following of group rules are required are of less interest. Play activities where change is integral to the activity are confusing and often cause unease and discomfort. Frequently children with ASDs separate themselves from others and wander or elope to a more comfortable location. Children with high functioning autism (HFA) may become frustrated by this inability to integrate with others during play and are at risk for being bullied or victimized by peers. High functioning children may or may not show concern, unease and frustration about this separation.
Approximately 50% of children with ASDs have associated cognitive disabilities. This may include intellectual di sability, learning disabilities or learning style weaknesses. A very small percentage of children with autism have splinter or savant skills. Savant skills denote interests and capabilities that are highly developed or very unusual for a child’s age.
Recently, the prevalence of cognitive disabilities has been decreasing.
This is presumably due to a early diagnosis and the implementation of successful learning strategies that improve the learning and intellectual trajectory for these children. Most educators believe early intervention and an earlier diagnosis improve intellectual outcome and decrease the risk for 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 may be 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.
For attention children with ASDs show a functional deficiency yet they often have exceptional focusing ability. They may also have remarkable abilities to focus on specific targets yet overall executive function skills are lacking in the areas of selective, shifting and sustained attention.
Children with ASDs often have sensitivity to sound. This is called hyperacusis and is not unique to children with ASDs. ASD children often express 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 over and under reactivity.
Lastly, motor patterns are also atypical, uneven and unusual. Delays in motor planning are common 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.
Adolescents who have an autism spectrum disorder (ASD) commonly have difficulty initiating and maintaining friendships. Peer interactions often are limited and this leads to frustration, anger and social isolation. Bullying can also occur as does acting out and challenging behaviors. These adolescents have difficulty recognizing and following accepted social norms. This lack of awareness leads to the adolescent with an ASD being identified by peers as being “different” and further social isolation that is peer and not self- induced often occurs.
Adolescents with ASDs have difficulty matching their interests to others. This pattern of Special interests can lead to further social isolation and decreased peer commonality. Other common associated problems include auditory processing, executive function, anxiety and ADHD. These difficulties further complicate social interaction and limit reciprocal social communication.
How do you recognize an adolescent who may have an ASD? The first step is to look for a longstanding pattern of preference for solitary activities. A recent pattern of separation would suggest depression. Look for difficulty with recognition of nonverbal social cues that limits the adolescent’s ability to understand the intent, purpose and meaning of others. Do they have difficulty making or keeping friends? Do they have highly developed or specialized interests that are appropriate for younger children or are excessive for their age? Is their eye contact limited? Do they have repetitive mannerisms of their hands or fingers? These are all signs to suspect autism.
When adolescents are diagnosed with an ASD we must adjust our interaction style to meet their needs. The goal is to support healthy lifestyle behaviors including healthy diet, exercise and adequate sleep. Stress must be managed and the integration of physical activity into every day is essential. Safety and security issues are a prime focus as is an open discussion of socially appropriate peer interactions, sexuality and bullying.
Adolescents with an ASD have the same puberty onset patterns as neuro-typical adolescents. They also have the same interests in sexuality. A difference, however, is they may have an inadequate understanding of issues relating to friendship and social cues relating to relationships and sexual behavior. Often language for these adolescents is concrete and rigid and increases misunderstandings. These responses lead to an interpersonal disconnect. Unsettling behaviors and socially inappropriate behaviors and responses often develop. The focus must always be on self-care, personal hygiene, safety and birth control.
Every parent of a child with an autism spectrum disorder experiences doubt, fear, anger, guilt and resentment. I wrote this guide to show parents they are never alone. Those of us who work with children, adults and families dealing with autism will be with you every step of the way to help you access the educational, social, vocational and medical and wellness programs you and your child need. We will always be here for you.
You have provided the best foundation possible for your child by providing a safe and secure home environment filled with love and acceptance.
This guide is a first step to provide you the knowledge and understanding to recognize, understand and respond to the present and future needs of your child. Happiness and satisfaction can be found in the love and support of others.
Throughout your journey never forget the importance of self-care and the power of love to transcend temporary failure. You know your child better than anyone. Allow faith and understanding to lead you to programs which foster and support lifelong opportunities and success for your child.
Every day I explain to parents why their child has an autism spectrum disorder and how the diagnosis will change their life and the life of their child. I see the uncertainty, bewilderment and fear in their eyes. I answer questions about services, expectations and outcomes. I provide support but mostly I listen and help in any way I can. Although we do not know what causes autism spectrum disorders we know we can help every child and adult who has autism. I have written this guide to help those exposed to autism directly or indirectly understand what it means to be autistic and how we can and must provide educational, social, behavioral and wellness services to every individual with an autism spectrum disorder. Please share this guide with everyone touched by your child and especially with your friends and family. It is my gift to you and was given to me by your child.