Dr. Barbie Zimmerman-Bier
Developmental Pediatrics
At The Children’s Hospital at Saint Peter’s University Hospital, we are family-centered and understand the needs of a child with autism and the people around them. Using state-of-the-art technical assessments that incorporate ADI (Autism Diagnostic Interview), we develop a clearer picture of which treatment strategies to follow. In addition to our ongoing research, we are currently working with Rutgers University to discover the link to the genetics of autism as well as working with Drexel College of Medicine in Philadelphia and the National Institute of Health. Our goal is to support everyone who interacts with a child with autism: parents, siblings, pediatricians, nurses, teachers and more—all to help them better handle the day-to-day situations that may arise.
Frequently Asked Questions About Autism
What is autism?
Autism is complex. It is a neurodevelopmental disorder that affects each individual differently. However, most individuals have problems with communication. The development of the child can be affected in multiple areas of development, including how a child uses words and gestures to communicate, the way a child plays by himself or with others and a child’s imagination, behavior and interests. Its symptoms show up early in life, sometimes in infancy, but generally before three (3) years of age.
(See: http://www.ninds.nih.gov/disorders/autism/autism.htm for more information.)
What causes autism?
A lot of research is being conducted to try to answer this question. In a minority of individuals, autism is a sign of an underlying genetic condition. However, in most cases the cause is unknown.
How common is autism?
Autism is considered to be the fastest growing developmental disability diagnosis. The Centers for Disease Control and Prevention report that 1 in 100 children in the United States has an autism spectrum disorder and that boys are much more likely to be affected than girls.
(See: http://www.cdc.gov for more information.)
How is autism diagnosed?
The diagnosis of autism is based on a child’s behaviors. Currently, there is no medical test (e.g., blood test, x-ray, MRI) that can make a diagnosis of autism. Doctors may order genetic testing to look for a genetic cause, and they may recommend other tests or studies to help determine if conditions (such as seizures) are also present.
When professionals evaluate a child to see if the child has autism or a related diagnosis, they look for difficulties in three areas: social interaction, communication, and unusual interests/behaviors.
Social Interaction: Young children with autism have difficulty with the give-and-take of social interactions. Compared to children who are developing more typically, they may be less likely to sustain eye contact with caregivers, to turn when their name is called, to enjoy games like peek-a-boo or pat-a-cake, or to approach other children to play. They may enjoy being held by their parents or engaging in active play (e.g., chase or tickle games) but show less social interest and responsiveness than you would usually see in young children without developmental concerns.
Communication: Children with autism are often slower to use single words and phrases than expected. They are also less likely to use common gestures, such as pointing to make requests or to direct a caregiver’s attention to interesting sights or sounds. Some children may develop language at the expected times but show regression or loss of language skills around 18 to 24 months. This loss of skills may include a decrease in social interest, as well as a loss of the words or phrases they had previously used. Children who do develop language may show unusual patterns of speaking, such as repeating or echoing phrases they hear people say or that they hear on television or videos. They may ask for things they want but have great difficulty carrying on simple conversations.
Behavior and Interests: Young children with autism often show a more narrow range of play interests than their peers and demonstrate more repetitive behaviors. For example, they may focus on lining up or spinning objects rather than pretending to feed a doll or teddy bear. They may also seem preoccupied with certain objects or insist on following particular routines. In addition, they may repeat specific movements, such as flapping their hands, rocking, or running back and forth.
Are there other behaviors or features that go along with autism spectrum disorders?
A number of behaviors go along with autism spectrum disorders. For example, it is common for children with ASD to demonstrate a high activity level and unusual sensory behaviors. They may have a short attention span for non-preferred activities but be able to focus on objects that they like for long periods of time. They may also be picky eaters and/or have difficulty sleeping. Finally, they may show differences in processing information they take in from their senses. That is, they may be over-sensitive or under-sensitive to things they hear, see, touch, taste or smell. For example, a child with an ASD might not turn when his name is called but can hear a key turning in a lock in another room.
Do all children with autism have significant developmental delays?
No, there is a very wide range of abilities in cognitive or thinking skills among children on the autism spectrum. Some children with autism are above average or even gifted.
Where should I start to find help?
Early Intervention: Children less than three years old
New Jersey Early Intervention System: For children birth to three (NJEIS) 1-888-653-4463. A child will qualify for services with a based on the degree of delay and diagnosis. A child who enters the NJEIS with appropriate documentation of a diagnosis of an ASD is presumptively eligible for the system. Children who do not have a documented diagnosis of ASD prior to referral are evaluated for eligibility according to NJEIS rules, policies and procedures. http://nj.gov/health/fhs/eis/policies.shtml. The EI program will help families transition to school based programs after the child turns three years old.
Child Study Team (CST): For children over three who have not been in the EI program, the first step is a referral for a Child Study Team evaluation. The Child Study Team is located in each public school district and consists of educational professionals set out to ensure evaluation, advocacy, support, and intervention of children with special learning needs. These include school psychologists, school social workers, and a learning disabilities teacher-consultant (LDT-C). A letter should be submitted to the supervisor of Special Education (information can be found on the district’s web site). Evaluations by the CST look at how your child is doing in school. This may include identifying behavior that affects their school performance, intelligence (IQ) testing, and mental health evaluation. Sometimes other types of evaluations will have to be done, such as medical/health, speech, physical therapy, occupational therapy, and psychiatric, neurological and developmental-behavioral. Evaluations are paid for by the school district. When the evaluations are completed, a written report, the Individualized IEP is developed. www.state.nj.us/education/specialed/form/prise/prise
New Jersey Department of Health and Senior Services (NJDHHS): New Jersey has made a commitment to assist families caring for children with complex, long-term medical and developmental disabilities such as autism. For these "special needs" children, prompt attention to their condition early in life helps assure they will lead healthier lives when they are older. The NJDHSS supports statewide referral networks that provide comprehensive diagnosis, treatment, patient and family education, and counseling for children and adults living with special child health services such as autism. http://www.state.nj.us/health/fhs/sch/index
Primary Care Providers: Discuss with your pediatrician or healthcare provider your concern and ask for referrals for appropriate evaluations. Pediatricians are trained to look for red flags for autism in young children and may provide autism screening questionnaires in the office. Pediatricians will continue to follow the medical needs of your child. http://www.aap.org/publiced/autismtoolkit.cfm
What areas should we focus on in our intervention plan?
The IFSP or IEP should address the areas that are challenging for your child. With ASDs, this often means helping your child develop practical communication skills, improve social interest and interactions with children and adults, develop play skills and imagination, decrease problem behaviors, and promote overall learning and thinking skills. Since transitions are often difficult for children with ASDs, the IFSP or IEP may also include strategies to help your child smoothly manage his or her daily schedule. Even though children with ASDs share certain features, your child will have unique strengths and needs. Consequently, no two intervention plans should be identical. As the names suggest, the IFSP or IEP should be “individualized” and designed specifically for your child.
In addition to teachers, what other specialists should be on our intervention and follow up team?
This depends on your child’s unique developmental pattern and needs. Some of the specialists who are often very helpful in working with children with ASDs include speech-language pathologists, occupational therapists, physical therapists, behavior therapists, psychologist and medical specialists. You may not need all these specialists on your team, but their roles will be briefly described here, along with links to their professional organization websites.
Speech-Language Pathologists (SLPs) are trained in the assessment, treatment and prevention of communication disorders. They typically assess and treat difficulties in language understanding and expression and also problems with speech (articulation and fluency). Since communicating with words and gestures is typically hard for young children with ASD, speech language pathologists are often crucial members of the intervention team. In addition to helping to develop practical communication skills and addressing speech difficulties, some SLPs also have training and experience in treating eating disorders. This is very useful for children with ASDs who may be picky eaters or have difficulty tolerating certain food tastes or textures. For more information see the American Speech and Hearing Association website at www.asha.org.
Occupational Therapists (OTs) typically focus on helping people develop fine motor skills (movements involving the smaller muscles of the arms, hands and face), process information from their senses, and carry out daily living activities, such as eating, dressing, and grooming. For young children with ASDs, OTs are often helpful in building their play skills, learning self-care skills, and coping with their sensory processing differences. For more information see the American Occupational Therapy website at www.aota.org.
Physical Therapists (PTs) are trained to treat problems with movement and posture. In contrast to OTs, they tend to focus on developing gross motor skills (movements that involve the larger muscles of the arms and legs). PTs can help children with ASDs who have difficulties with coordination, balance, or motor planning move about their environment and participate in play and recreational activities more effectively. For more information see the American Physical Therapy Association website at www.apta.org.
Behavior Therapists vary in their training backgrounds. Some will have certification through the Behavior Analyst Certification Board (BACB). Whether you are trying to locate a behavior therapist through the early intervention or school system or are looking to hire one privately, it is important to find out about their educational background and work experiences with children with ASDs. Behavior therapists will likely implement a therapy called Applied Behavior Analysis (ABA). While the name sounds intimidating, it is basically an organized approach to behavior change where you increase positive behaviors or teach new skills by rewarding the behaviors you want to develop. There are a number of specific types of ABA (discrete trial training, pivotal response training, incidental teaching, etc.), but they all work on the same basic behavior principles. The goals of ABA are to increase positive behaviors, to teach new skills, to decrease undesired behaviors, and to help children to use these new skills at home, school, and other settings where they play and interact with other people. Your behavior therapist should be aware of your child’s IFSP or IEP goals and should keep records to track the progress being made. For more information about ABA and other treatment approaches, see the “Treating Autism” section of the “First 100 Days Kit” which is available at http://www.autismspeaks.org or the Behavior Analyst Certification Board at www.BACB.com.
Social Worker: A social worker can be part of a team providing assessment and care to individuals with autism in the school or medical setting by providing early intervention, prevention, consultation, counseling, case management, and support services. A social assessment includes observation of the child and communication with the child’s parent(s)/guardian(s). It shall also include an evaluation of the child's adaptive social functioning and emotional development and of the family, social, and cultural factors which influence the student's learning and behavior in the educational setting. The education of social workers begins with a bachelor's degree (BA, BSc, BSSW, BSW,) or diploma in social work. Social workers can obtain postgraduate degrees in social work like master's (such as MSW, MA, MSc, MRes, MPhil etc) or PhD (doctoral studies). The State Board of Social Work Examiners (BSWE) approves individuals for certification and licensure to practice social work in the State of New Jersey. There are three levels of social work practice: certified social workers (CSW), licensed social workers (LSW) and licensed clinical social worker (LCSW). Licensed clinical social worker represents the higher-level license. It requires a master's degree or doctorate degree in social work, and 4000 hours of supervised work experience. http://www.state.nj.us/oag/ca/social/swlic
Child Psychologist: A child psychologist is an individual with a doctorate degree in psychology who works specifically with children, dealing with such issues as relationships with parents and schoolmates, learning disabilities, developmental disorders and behavioral problems. Child psychologists can have additional training and expertise in the diagnostic assessment for autism, functional assessment of the child, behavioral treatments and monitoring of progress for a child with autism. Child psychologist’s complete a doctoral degree in psychology, and then complete additional supervised training hours. After completing these steps, a license from the state can be obtained to practice. Child psychologists often work with a team of professional either in a medical or educational setting to provide academic or cognitive testing, diagnostic assessment, counseling or behavior management for children with autism. http://www.njconsumeraffairs.gov/psy/
Developmental-Behavioral Pediatrician: A developmental-behavioral pediatrician is a medical doctor trained to diagnose and treat a variety of developmental, learning, or behavioral problem including autism spectrum disorders. Developmental-behavioral pediatricians have completed four years of medical school, three years of residency training in pediatrics, board certification in pediatrics and additional subspecialty training in developmental-behavioral pediatrics.
In 2002, the American Board of Pediatrics began certifying developmental-behavioral pediatricians via a comprehensive examination process. Developmental-behavioral pediatricians understand that children’s development and behavior happen first and foremost in the context of the family. They seek to understand the family’s view of the problem and the effect of the child’s problem on the family. Developmental-behavioral pediatricians advocate for their patients with developmental and behavioral problems by working closely with schools, preschools, and other agencies involved with developmental care and education. Some developmental-behavioral pediatricians have expertise in standardized diagnostic assessments for autism, in psychopharmacological treatments and/or behavior management techniques. A developmental-behavioral pediatrician can follow and design treatment programs, evaluate and treat some co morbid medical concerns such as sleep disorders, attention difficulties, constipation and anxiety in children with autism. https://www.abp.org
Child Neurologist: Child neurologists are medical doctors who have completed four years of medical school, at least one to two years of pediatric residency, three or more years of residency training in adult and child neurology. In addition, most child neurologists have certification from the American Board of Pediatrics and the American Board of Psychiatry and Neurology (with special competency in child neurology). Some child neurologists secure additional fellowship training in epilepsy. Child neurologists treat children from birth into young adulthood and combine the special expertise in diagnosing and treating disorders of the nervous system (brain, spinal cord, muscles, nerves) with an understanding of medical disorders in childhood and the special needs of the child and family. In many cases, child neurologists work as a team with other pediatric specialists to care for children who have more complex or serious medical issues, such as autism to provide ongoing care and close follow-up throughout childhood and adolescence. Neurologists can evaluate a child with autism when there are concerns about movement disorders, epilepsy, headaches, migraines, sleep disorders and other neurological complaints. http://www.abpn.com
Child Psychiatrist: The child and adolescent psychiatrist is a medical doctor who uses knowledge of biological, psychological, and social factors in working with patients. Initially, a comprehensive examination is performed to evaluate the current problem with attention to its physical, genetic, developmental, emotional, cognitive, educational, family, peer, and social components. The child and adolescent psychiatrist arrives at a diagnosis and then designs a treatment plan which considers all the components and discusses these recommendations with the child or adolescent and family. This may involve individual, group or family psychotherapy, medication, and/or consultation with other physicians or professionals. In addition, the child psychiatrist is prepared and expected to act as an advocate for the best interests of children and adolescents. Child and adolescent psychiatric training requires four years of medical school, at least three years of approved residency training in medicine, neurology and general psychiatry with adults and two years of additional specialized training in psychiatric work with children, adolescents and their families in an accredited residency in child and adolescent psychiatry. Some child psychiatrists have additional training in the diagnostic assessment and psychopharmacologic treatment of autism. Psychiatrists often manage problematic behaviors and co morbid psychiatric concerns in individuals with autism. http://www.aacap.org
What are the characteristics of effective interventions for young children with ASD?
Effective interventions start when ASD is suspected, involve active engagement with the child for at least 25 hours per week, include one-on-one and small group teaching, incorporate parent training, have a low student to teacher ratio in classroom settings, and regularly assess the child’s progress. As you are developing your child’s IFSP or IEP, these are good principles to keep in mind.
See the National Research Council’s (2001) Educating Children with Autism at http://www.nap.edu/openbook.php?isbn=0309072697 for more details.
Does my child need to see medical subspecialists?
Children who have a diagnosis of an autism spectrum disorder should be evaluated by a physician with expertise in the evaluation and management of autism spectrum disorders. Most developmental and behavioral pediatricians are skilled in the diagnosis of autism in very young children follow-up and coordination of care. They can also evaluate for occurring medical problems in your child and refer to appropriate specialists if needed. It is not rare for children with ASDs to also have medical problems such as a GI disturbances (constipation, reflux, and diarrhea), sleep difficulties, feeding issues, or sometimes seizures. Treating conditions that go along with ASD’s may increase your child’s comfort, improve learning, and progress http://www.aap.org/healthtopics/autism.cfm for more information.
Does my child need medication?
There is no medicine that will cure autism, but there are medicines that can treat some of the symptoms. For example, some children benefit from medication for sleep problems, anxiety, hyperactivity, self-injurious behavior, and mood swings. If you consider medication, talk with your physician about possible side effects and whether the medicine is appropriate for young children. For more information, see the American Academy of Pediatrics website at www.aap.org.
Are my younger (or future) children at risk for autism?
We know that having one child with autism does increase the risk for later-born children. Studies have shown that families who have one child with autism have about a 5 to 10% chance of having a second child with autism. This risk is higher if there are two or more children in the family who have the diagnosis. A specific recurrence risk can be provided if your child is diagnosed with a genetic syndrome that is associated with autism. You will want to work with your primary care professional to be sure that your younger children get regular developmental and autism-specific screenings during well-child visits. Some developmental-behavioral pediatricians will provide screening evaluations for siblings of children with autism.
What else should I do?
Develop your own personal team of allies for support. Parenting is often very challenging, and we usually don’t receive adequate preparation even for typical development. When you are faced with a developmental disability like an ASD, parenting becomes even more complicated. Assembling a group of people you can trust and rely upon is very important. You will be better able to meet your child’s needs if you take care of yourself. Find parent support groups. Spend enjoyable time with your other children or family members. Seek respite care. Ask for assistance from your faith community. If you are feeling so sad or overwhelmed that you feel hopeless or paralyzed, seek out the help of a counselor or therapist. Talking with other parents who have children with an ASD can be invaluable.
What can I expect for the future?
Even though you have just recently received a diagnosis of an ASD, you may already be worrying about what the future will hold for your child. Will he or she be able to go to college, hold a job, or have a family? For any child it is difficult to predict the future, and with young children small positive changes can have a great impact on long term development. Work with your team (intervention providers and medical team) to monitor your child’s progress and develop effective treatment plans.
New Jersey Resources:
- The Autism Clinics at The Children’s Hospital at Saint Peter’s University Hospital: 732-339-7045
- www.MyGoalAutism.org Phone: 877-886-9462 Provides autism family support services, education and more.
- Autism New Jersey Phone: 1-800-428-8476 Provides autism resources in NJ and more.
- POAC Phone: 732-785-1099 Parents of Autistic Children support and resources.
- SPAN
- New Jersey Department of Health and Senior Services