who is who? seeking out specialists for children with developmental delays

The author, Juliet Hiznay, is a special education advocate and attorney in private practice in Northern Virginia. For information about her practice, visit http://jdhiznay.com/ 

For my own family, it all started during a parent-teacher conference at a private preschool. The teachers told us they were concerned that our 4-year old son might not be able to be a successful and whole person or reach his full potential in life. Blinking through tears, I was shocked, bewildered and had no notion of what had just happened. They explained what they were observing at school, but their experience of our son was very different from our experience of him. It was very hard to accept. We now know that the preschool setting was a much more challenging place for our child than our quiet and predictable home. It was hard to recognize in our son the nature of his disability because he was sweet tempered, engaging, enthusiastic, physically active and verbal. He had not missed any benchmarks other than fine motor tasks. Over time we came to accept that he was on the autism spectrum. At the time, without knowing the vocabulary of the disability universe, the internet was not the tool it should have been, and parenting books were too vague. It required many forays with specialists to arrive at a diagnosis. It was a painful and expensive journey and I regret that it took so long.

This article, the first for NOVA Education Resources, is meant for parents who have learned that their child is not developing typically. The hope is to provide a “short-cut” for parents who are on a steep learning curve at a difficult time by providing a quick overview of what various specialists do from a diagnostic and therapeutic point of view, and a framework of vocabulary.

Learning that your child may have a disability affects all the close relationships in your life: those with your spouse, partner, parents, friends, colleagues, acquaintances and often even interactions with total strangers (think meltdown at the supermarket). There is a grieving process that occurs and the challenge of dealing with skepticism from well-meaning people. Sometimes doing what is right means choosing a road against the wishes of other family members or disagreeing with friends, which is not easy. Maybe this article can make it a little easier for some. Please share it with anyone you think might benefit from the information. Please note that this is for your general information only and is not a substitute for medical advice – please seek medical advice from your doctor.

The Scramble: Is There a Medical Cause?

Parents are thrust into a scramble when they realize their child is not developing typically. Sometimes this happens when children are expelled from a preschool program, when parents are trying to decide whether to get evaluations done through the public school system, whether to agree to special education services, or whether to hold their children back from starting school. To effectively address these issues, parents must integrate various pieces of information from friends, family, educators, therapists and doctors to puzzle out what is happening with their child. Some issues do have a medical cause and diagnosing those or ruling those causes out is an important step in the process. For example, decades ago, a relative of mine suffered from twisted bowel as an infant but this very painful problem was not diagnosed for a number of years. Instead, he was placed on psychiatric medication at a very young age to address uncontrollable crying and sleeplessness. One would like to think such a thing could not happen again but, based on press reports, the use of psychiatric medication in very young children is on the rise. If children are unable to communicate what is happening to their bodies, it can be very challenging to sort out a medical problem from a behavioral or mental health challenge.

This is Who

Pediatrician – this is a medical doctor who treats only children. This doctor will do the annual medical health checkups, order testing, treat illnesses such as bacterial and viral infections, screen for developmental milestones, make referrals to specialists and provide vaccinations. Pediatricians can prescribe medicine but, as generalists, they do not usually have expertise in the diagnosis or treatment of developmental disorders. Many pediatricians lack the training to effectively screen children for developmental delays or to make recommendations for treatment. For this reason, it is often the case that children are first “flagged” for a developmental delay by early childhood educators.

Medical Doctors with SubpecialtiesThis list is not comprehensive. Many children lack the self-awareness or expressive language skills to communicate how their bodies are feeling or functioning. Based upon many discussions with parents and following e-mail lists for years, many specialists may be needed to identify concerns of a medical nature, some of which can have a significant impact on the day-to-day functioning of the child. These are medical doctors, preferably with a significant pediatric caseload, who are commonly consulted by parents who have children with developmental delays: Ear, Nose & Throat Specialist, Pediatric Optometrist or Ophthalmologist, Allergist and Immunologist, Pulmonologist, Gastroenterologist, Dentist, Orthopedist, Cardiologist, and Nutritionists (may or may not be a medical doctor).

Developmental Pediatrician – this is a medical doctor who is a pediatrician with a subspecialty in childhood development. For children with developmental delays, this is the doctor who may initially evaluate and diagnose your child. This doctor is able to prescribe medications to treat symptoms for various disorders. Especially common would be selection of medications for treatment of Attention Deficit Hyperactivity Disorder (AD/HD) or Autism Spectrum Disorders. This doctor may also make referrals to others specialists, such as geneticists, psychiatrists, and recommend follow-up testing. Developmental pediatricians typically do not provide the type of detailed reports that are helpful in the school setting for identifying strengths and weaknesses in children, so while they are a good first choice for a diagnosis in pre-school aged children, they do not usually carry out the comprehensive educational assessments that can be used to document the need for specific services or accommodations in the school setting.

Clinical Pediatric Neurologist – this is a medical doctor who treats brain diseases such as brain tumors, epilepsy, seizures, movement disorders, and neurodegenerative conditions. These doctors may also treat and study developmental brain disorders. Neurologists do not typically provide educational assessments, but they can prescribe medication, are more likely to use brain scanning tools for diagnostic purposes, and frequently they are surgeons.

Clinical Neuropsychologist – this is a psychologist who has expertise in the function of the brain and its cognitive processes. Some clinical neuropsychologists have a pediatric specialty and have specialized knowledge in developmental delays and disabilities. Many parents and educators consider an evaluation by an experienced pediatric neuropsychologist to be the “gold standard” for evaluating children who may have Attention Deficit Hyperactivity Disorder (AD/HD), Autism Spectrum Disorders, specific learning disabilities or other disabilities. These tests can take multiple days and the reports can be very helpful in identifying strengths and weaknesses for developing education plans and accommodations available under the section 504 of the Americans with Disabilities Act in the school setting. Neuropsychologists do not typically prescribe medication to their clients.

Clinical Psychologist – this is a psychologist who treats mental disorders. This is a broad field, as it encompasses all the diagnoses covered under the Diagnostic and Statistical Manual of Mental Disorders (DSM), which at this time includes AD/HD and all Autism Spectrum Disorders, as well as many diagnoses that are commonly occur with other developmental disabilities, such as Obsessive Compulsive Disorder, Major Depression, Generalized Anxiety Disorder, and Bipolar Disorder. Many clinical psychologists treating individuals with developmental disabilities limit their practice to treating children. Psychologists cannot prescribe medication. Psychologists generally focus on therapies, which may include different approaches to psychotherapy, cognitive behavior therapy or for young children may include “play therapy.” Some psychologist have very specialized practices. Some clinical psychologists have specialties in developmental disorders and learning disabilities, and may offer the same types of assessments offered by neuropsychologists.

Psychiatrist – this is a medical doctor who can diagnose and treat mental disorders (which as described in the prior paragraph is a broad field) and can prescribe medication. Some psychiatrists specialize in treating children and teens, who may respond very differently to drug therapies than would adults. Many psychiatrists focus primarily on medication management and do not provide any type of therapy, while others offer the same kinds of talk therapies offered by clinical psychologists.

Clinical Social Worker – this is a specialty of social work that typically offers direct therapeutic support for those with mental health issues. Clinical social workers often focus on therapies, including many of the same therapies employed by clinical psychologists such as play therapy and cognitive behavior therapy. Clinical socials workers are often more knowledgeable about the supports offered through human services departments and may be well suited to develop treatment plans with parents that include referrals to specialists in multiple disciplines.

Occupational Therapist (OTR/L) – this is a licensed and registered therapist who provides direct therapy to assist in the acquisition of motor skills and sensory integration. Occupational therapists also carry out assessments that are frequently used to determine whether services are needed in the public school setting. Motor skills encompass fine motor (e.g. writing, tying shoelaces, opening containers, cut and paste skills), gross motor (e.g. jumping, skipping, running, hopping, squatting, rolling, swinging, pushing, pulling), visual motor integration, bilateral coordination (using both hands at the same time to accomplish a task), visual spatial skills, and motor planning (e.g. solving puzzles or navigating obstacle courses).

Speech Language Pathologist (SLP) ­– this is a licensed therapist who provides direct therapy to children with speech or language difficulties. Speech language pathologists also carry out assessments that are frequently used to determine whether services are needed in the public school setting. Speech issues that arise can vary tremendously. Some are the results of physical characteristics of the mouth, such as cleft palate or low muscle tone, others relate to the way the mouth and tongue are used to form sounds. Some speech disorders may be related to hearing issues as well, which would indicate a need to be screened by an audiologist. Speech Language Pathologists (SLPs) are also trained to address Language Disorders, which can be very broad in nature, encompassing those who have Apraxia, Autism Spectrum Disorders, and even AD/HD. SLPs may have specialized experience in the area of communication and social skills. Many private practices offer camps and social skills groups as a supplement to 1-1 therapy offered in their office. Typically, an SLP who provides services to children does not serve adults.

Audiologist – this is a licensed health professional specializing in hearing issues. Audiologists do not typically provide direct services in the public school setting. Some audiologists provide assessments not typically available from an ear nose and throat doctor, in that they test not only for the ability to hear, but also for processing difficulties. Many children with developmental delays have trouble filtering sound for one reason or another or have slower processing speeds which impact their ability to follow instruction. An audiology assessment may be used to identify any processing delays or difficulties. Some Audiologists also offer therapeutic listening programs, which some families use to treat children with developmental delays.

Board Certified Behavior Analyst (BCBA) – this is a specialist in behavior. A Board Certified Behavior Analyst (BCBA) may specialize in analyzing behavior in a child at home or the school setting. Some BCBAs specialize in Applied Behavior Analysis (ABA) or Discrete Trial Training (DTT), which are tools used to help children with behaviors that interfere with their ability to learn. ABA and DTT are also used for children with autism spectrum disorders and can be applied to support positive behavior plans and to teach language and communication skills. Some BCBAs in private practice carry out assessments and design behavior plans which are individualized to each child. It is important to ensure that a BCBA has the expertise to address the issues of particular concern for your child. School systems in Northern Virginia have hired BCBAs on a limited basis to assist with the needs of students, and particularly those who have educational labels of Autism and Emotional Disability.

Posted June 19, 2012; All Rights Reserved Juliet D. Hiznay