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The decision to have your child evaluated for a suspected developmental delay, emotional or intellectual deficit, or related concern is one of the most difficult that any parent will ever have to make. As much anguish, anger, sorrow, confusion, guilt, regret, resentment and many other feelings that it might arouse in the hearts and minds of all involved, proper evaluation and diagnosis can mean a world of difference for the child. Diagnosis opens the door to vital resources and services that could potentially be available to the child well into adulthood. However, for many, the road leading to essential services is so daunting and incomprehensible, that many families often delay their search for supports, if they don't give up all together.
In the interest of helping families who are just beginning this process, I want to discuss the key players that will improve the chances of getting both a) a proper diagnosis and b) adequate supports and services. Let's take a look at your best allies in this process and why the role they play is so important to the well-being of special-needs children. Please note, the specific terms and titles of these professionals may be different than those used in your locality. Each state and local jurisdiction has different policies and regulations regarding evaluation and diagnosis of medical problems, psychological issues and developmental delays. The same applies to other countries around the world.
A Guide to Pediatric Specialists
The pediatrician is the first professional on the list and deserves the most attention. Pediatricians are responsible for carrying out well-child visits, at various points. Ongoing monitoring of physical, emotional, intellectual and social development is a major part of every well-child visit. These well-child visits are crucial for identifying any major medical or health issues the child might have, as early as possible. Once medical issues are accounted for, the doctor will focus in on developmental milestones. If the child is showing delays in one or more areas of development, the pediatrician may want to investigate, and will use one or more "screening" tools to determine if a full evaluation is needed. Screening tools are brief question and answer forms, usually completed by parents or pediatrician or both, which are then scored by the doctor, yielding a t-score or some other statistical measure. This score is compared to critical cut-off scores, indicating the need for further assessment. There are several well-researched screening tools that have been developed and are widely used today. If the child is under 2, or if the scores are in the borderline critical range, you may decide to hold off, and see how things play out, in terms of development. A child at 18 months can look vastly different at 24 months developmentally, so some caution at that early age may be wise. On the other hand, if it is decided that your 18 month old needs intervention services, a little bit of help may solve the problem and relieve worries. Visual or hearing deficits, major medical health and/or allergy issues will need intervention right away. The standard procedure in the health care world is to rule out potential issues in the following sequence: physiological or medical issues, then developmental issues, and finally psychological issues. Emotional disturbances and psychiatric disorders usually are not measurable in any significant way in young children and, if present, would be diagnosed later in life, usually no earlier than age five.
As the results of the screens are discussed, choices need to be made. Again, if the primary concerns are medical or physiological, the pediatrician will refer the child to the appropriate medical specialty office, without delay, regardless of age. Typical problems that might be diagnosed in early childhood include vision or hearing loss, disorders associated with gastrointestinal functioning, neurological problems and allergies. If the issues are developmental delays, the pediatrician would most likely contact your local Early Intervention Services Office. These agencies will do a variety of assessments, such as physical therapy, occupational therapy, speech therapy, or even an intelligence assessment, focused on helping the child progress in the areas that appear to be delayed. But who are these people?
Physical Therapist (PT)- This is someone who has a degree and certification to perform assessments and early intervention for children who show signs of physical, developmental or cognitive problems related to gross motor skills and movement.
Occupational Therapist (OT)- This is someone who has a degree and certification to perform remedial services with children in need of help with their "occupations" (for a young child, this means feeding, socializing, playing, and other life skills including fine motor skills and sensory related issues.)
Speech-Language Pathologist (SLP)- This is someone who has a degree and certification to provide remedial speech and language activities with children who have been diagnosed with some sort of speech, language delay or disorder.
Developmental pediatrics is a medical specialty, not just another name for a doctor who works with young children. These individuals are specially trained to assess, evaluate and diagnose a whole range of developmental and intellectual-functioning deficits To be certified by the American Board of Pediatrics, one must complete a three year fellowship in developmental pediatrics just to begin the process. I am emphasizing this point because I believe that the best possibility of obtaining an accurate diagnosis for a young child is an evaluation led by a developmental pediatrician. Your developmental pediatrician will continue to monitor your child, up to age 18, if needed, which is another major advantage to finding one to evaluate the child right from the start. Letters and other legal documents, used to demonstrate medical necessity for certain services will be needed throughout the child's life, and none carry more weight than those written by a board-certified developmental pediatrician. I can't overstate this enough. As you might imagine, board-certified developmental pediatricians are a rare breed and not dispersed throughout the country in all communities (ours is affiliated with a University medical center, for example.) If a developmental pediatrician is simply not available to you within, say, a 50-100 mile radius, there are other options.
A Pediatric Neurologist, Developmental Neurologist or Developmental Psychiatrist are a few other medical specialists that would also be well-suited for this type of evaluation. The only problem is they are more difficult to come by than a developmental pediatrician. Whatever the title, the key here is that this person has EXTENSIVE training in diagnosis and treatment of developmental/neurological issues in young children.
A psychiatrist is a medical doctor who specializes in mental and emotional health issues, primarily among children older than 5 as well as teens and adults. Because their training is focused on mental illness, rather than development, psychiatrists are probably less capable of accurately diagnosing autism or other developmental issues, in children under five. The psychiatrist is simply not as well versed in early childhood development as some other professionals that we have discussed here already. However a specialist in child psychiatry may be the best source for medication management and ongoing care, if the patient is over age 5 and presents with an anxiety, mood or attention-deficit disorder in addition to any developmental issues. They won't be treating the developmental problems, rather the co-occurring psychological issues that could be ameliorated with medications.
A clinical psychologist (this is someone who has a Ph.D. or Psy. D. in Clinical Psychology) is another resource for getting an evaluation for psychological or developmental issues. These professionals are not medical doctors, but they have course work and on-the-job experience using a variety of assessment tools and conducting diagnostic interviews that qualify them for the role. The medical knowledge they lack is obtained from the child's pediatrician or from studying copies of the child's medical records, as well as any previous assessments or screenings conducted by other professionals, in order to establish the medical and developmental history required for proper diagnosis. Parental feedback is also a key source of data in clinical assessments. However, there is a catch. Psychology is a pretty broad field and not all clinical psychologists have much job experience or coursework working with folks who have developmental delays. For example, a parent who is referred to a clinical psychologist for their child's autism evaluation should ask about the clinician's level of experience working with developmentally disabled clients. You might be surprised just how little genuine knowledge and experience passes for expertise in some cases, so, just be cautious. If your child is under 5 and you really trust your pediatrician's judgment, you should come away from an evaluation with a clinical psychologist with a legitimate diagnosis and well-rounded evaluation.
With school-aged children and adolescents, a clinical psychologist is probably the best option for getting a thorough and accurate assessment and diagnosis. Their services may be limited to evaluations, but a psychologist may be able to refer you to top professionals and supports (psychiatrists, social workers, day programs, etc.) in your area, if needed.
No matter what title the person may have, the professional conducting these evaluations must use the same standards used in other settings. This is accomplished by using a diagnosis code from one of the two major medical diagnosis manuals: ICD-10 and DSM-V.
ICD-10-CM Expert for Physicians 2016: The Complete Official Version (Icd-10-Cm Expert for Physicians Draft), published by the World Health Organization, is the main resource for all medical conditions and is used by medical professionals around the world.
The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5 published by the American Psychiatric Association, is the primary resource for psychologists and others with training in mental illness. Both include diagnostic criteria for developmental disorders, including autism spectrum disorder, and in general, the criteria are very similar in both manuals. Whatever diagnosis your child receives, make sure it is listed in one or both of these manuals, to guarantee that it will hold up as an "acceptable" diagnosis to insurance providers, other medical practices, government agencies, etc. And, make sure that one of those titles is referenced in your child's evaluation and assessment report.
Pediatricians aren't the only professionals that may be involved in a referral for developmental concerns. School psychologists are also good referral sources for developmental evaluations, especially with school-aged children. A school psychologist (Ed. S. in school psychology) is trained specifically to provide these assessments, which are used to identify students who need additional supports, such as Special Education services. They are not medical doctors and they are not licensed clinical psychologists (who have PhD.s), but they have the unique ability to assess academic abilities in the context of other psychological or developmental issues. School psychologists can screen for autism or other issues as part of their assessment, but they cannot diagnose them, so they would recommend an evaluation by, you guessed it, a developmental pediatrician, or a clinical psychologist if the child is over 5.
Please note that so far we have only recommended medical doctors or clinical psychologists as the only professionals we would trust with a developmental disorder diagnosis. PTs, OTs, SLPs school psychologists, licensed clinical social workers (LCSW) special educators, behavioral specialists etc. are all examples of who NOT to go to for a comprehensive evaluation for autism and other complex psychological issues. Many will likely argue against this point, and some disciplines certainly have extensive hands-on experience working with and identifying symptoms of autism and other developmental disorders in the populations they serve. However, these fields are highly specialized and lack the unique training that developmental pediatricians receive, which makes them fully capable of assessing the child as globally as possible. Indeed, in some settings, certain portions of a full developmental or psychological evaluation are conducted by SLPs, OTs, PTs, etc. since they are well qualified to assess specific skills in young children and note where there are delays. A careful, thorough clinician will base any diagnosis on as much evidence as possible, so many take a team approach with evaluations. It may or may not take a village to raise a child, but it definitely takes one to diagnose a child with a significant developmental, behavioral or intellectual disorder!
Social Workers (also known as Professional Counselors, Mental Health Therapists, and Marriage and Family Therapists), specialize in diagnosing and treating mental health issues primarily. These professionals have Master's degrees and need to be in full-time practice for at least three years before they can be licensed by their state, and their main intervention is talk therapy. So, again, the lack of training and expertise in early child development limits their ability to diagnose developmental disorders. Training for counselors simply does not emphasize autism spectrum disorder or other developmental disorders, so it is overlooked in adult populations as well. Yet, frequently, children are referred to counselors for help with "behavioral issues", and developmental issues are likely to be misdiagnosed as psychological or emotional disorders, if they are identified at all. Counseling is very effective with motivated individuals who suffer from mental or emotional issues, but is NOT the best place to start if there are developmental concerns. Again, a team approach to diagnosis is needed, and the interventions and services that are put into place will address all the needs the child has, from speech to social skills, to anger management and medications. If it is clearly established that a child has autism or a related disorder, a good child therapist can certainly provide services aimed at managing anxiety or communicating more effectively. Just leave the evaluation and diagnosis to the medical doctors and clinical psychologists.
Once a thorough evaluation has been completed and a diagnosis has been confirmed, you are prepared to enter the world of service coordination/case management. First let's figure out who these people are.
Case Manager/Service Coordinator (There are many different titles but the job is basically the same.)
Case managers come from a huge variety of educational and work settings. They typically have a 4-year degree in a human services field, but not always. The major role is linking up clients with services and supports available in the community as well as funding sources for necessary equipment or materials. They also serve as vital advocates for the child in school or other settings in the community. Most are required to make monthly contact and can stay on as your child's advocate for years. A good case coordinator can be your child's best friend, essentially working miracles by pulling the right strings or contacting the right people, all with the child's welfare at heart.
Still confused? Don't be surprised. It really can be quite difficult to grasp, even when you do know where to go for help. The intention of this post is to demonstrate that there are good, highly-skilled people who have dedicated their professional careers to individuals with disabilities. There is hope and there is help available, if you know how to find it. No one can go it alone when it comes to supporting someone with a significant medical, developmental or psychological issue. As a parent, you have the opportunity to assemble a team of professionals, and lead the way to a brighter future for your precious child. Hopefully, this post will serve as a map to get your started.
If you're considering taking your child to a developmental pediatrician, be sure to read this popular post below to help you prepare!
About the Author:Jason has a master's degree in Marriage and Family Counseling. He has spent the last eight years working as a therapist to adults and children, in a private and group counseling sessions, and in residential facilities. At home, Jason has four plus years experience as a foster parent with his wife Renae, caring for children ages newborn to eighteen years of age with multiple special needs. He is also a parent to four special needs children, two biological, and two adopted, with diagnoses of autism, ADHD, RAD, PTSD, mood disorder, anxieties, and sleep disorders. Jason has been diagnosed with Autism Spectrum Disorder, ADHD and Anxiety Disorder NOS.
Disclaimer: Any advice or suggestions that Jason writes here CANNOT be considered therapy or professional consultation, due to counseling ethics standards. It is not really practical or possible to do counseling with someone he has never met. What we hope to offer IS our personal experience as as parents and foster parents of special needs children, plus things Jason has learned as a professional counselor. Take any advice that fits, leave aside what doesn't fit.