Getting A Diagnosis
Early diagnosis has no down-side. An evaluation should be scheduled as soon as concerns arise. Learn about types of evaluations here.
Choosing Professionals & Coordinating Services
The most commonly asked question is: What do I do? If your child has not yet received a diagnosis, you will need to have a developmental evaluation. A developmental evaluation may be conducted by a physician (such as a pediatrician), a psychiatrist, or a psychologist. While pediatricians may be able to make this diagnosis, many are not comfortable in doing so. You may need to see a specialist, such as a developmental pediatrician, psychologist, psychiatrist, or neurologist. Although many different specialists can make the diagnosis, some agencies (particularly Florida’s Agency for Persons with Disabilities (APD) require a diagnosis by a licensed psychologist in order to qualify for services. Medicaid requires a diagnosis by a medical doctor with a prescription for services, as will most insurances. Remember to get copies of all tests and reports for your files.
Because ASD and related disabilities are difficult to diagnose, a child may be evaluated by a variety of professionals before a final diagnosis is determined. Unless specifically trained in the area of developmental disabilities, physicians and psychologists may have little experience with autism spectrum disorders. Some may have never seen a young child with autism when a parent brings their child in with the first signs of the disability emerging. The following are brief descriptions of the specialists most commonly associated with diagnosis, intervention, and treatment of autism spectrum disorder, and suggestions about how to select professionals to work with you and your child.
If you are an adult seeking a diagnosis, your options will be different. Please visit our ASD in Adulthood section for more information.
- Developmental/Behavioral Pediatrician: A physician specializing in diagnosing and treating children with developmental disabilities from birth to adolescence, who will follow the child’s development and sometimes supervise medication management.
- Psychiatrist: A physician who focuses on diagnosing and treating mental illnesses from a biological and psychological perspective and may prescribe various medications for treatment.
- Psychologist: A licensed practitioner specializing in diagnosing and treating a person’s behavior, emotions, and cognitive skills. They may recommend strategies to aid growth and development or help with challenging behaviors.
- Neurologist/Pediatric Neurologist: A physician specializing in diagnosing and treating disorders of the nervous system, including seizures. They may run neurological tests to rule out seizures and other brain abnormalities and may also diagnose ASD.
- Geneticist: A physician specializing in the study of disorders associated with heredity.
- Occupational Therapist: A licensed practitioner specializing in enhancing participation in the performance of activities of daily living (e.g., feeding, dressing), instrumental activities of daily living (education, work) and social participation. Some OTs address hyper- and hypo-sensitivities associated with ASD, and sensory integration difficulties.
- Speech Language Pathologist: A licensed and certified practitioner specializing in diagnosing and treating disorders of communication, including speech articulation, voice, and prosody, and language, including semantics, syntax and pragmatics. They may also specialize in disorders of reading and writing, or swallowing and feeding.
- Audiologist: A practitioner specializing in the diagnosis and evaluation of hearing problems.
- Behavior Analyst: A practitioner specializing in the use of principles of Applied Behavior Analysis to develop desirable behaviors and replace behaviors that are problematic. There are several levels of certification for behavior analysts, and more detail can be found by clicking on the link.
Choosing a professional is not always easy. When choosing a professional to work with you and your child, it’s important to look for someone who shows respect for and regards parents as experts on their children. The professional should convey a sense of hope and have a philosophy similar to your own. Look for a professional who takes an individualized approach to treatment and intervention — one who does not say that all people with autism exhibit the same characteristics.
Based on your child’s needs, it will take various professionals working together with you to develop a treatment and intervention plan. The most effective treatment of people with autism almost always involves a long term team approach. Visits to the classroom, home, and community usually provide the most useful information about the child. Since frequent visits may not be possible, the professional may collect information through interviews and questionnaires.
Just as professionals ask many questions, so should you. Remember, no questions you have regarding your child are trivial or unimportant. You may want to ask some of the following questions of the physicians and therapists:
- What are my child’s strengths? How can they be maximized?
- What specific activities or interventions should I do at home?
- What kind of testing and evaluations should my child have?
- Why should my child have these tests and evaluations?
- How is each test or evaluation performed?
- How will the results influence my child’s intervention or treatment?
- Can you put me in touch with another family you are currently working with?
- Do you have any articles or resources on autism or autism spectrum disorders?
- Can I have a copy of your report? How soon will it be until I receive it?
Obtaining and reviewing all reports is very helpful in understanding your child’s needs, progress, and how recommendations can maximize your child’s potential.
Sometimes evaluations and recommendations may be different or conflicting. This can be confusing and exhausting. A case manager or service coordinator can help when questions, problems, or concerns arise. A case manager keeps current records and, when appropriate, shares information about a child with professionals involved in that child’s care. It’s one very effective way to make sure a child’s needs are being met. Case managers may also help by making sure all appointments are scheduled, tests are performed, evaluations conducted, and that appropriate and effective follow-up care is being provided.
If an evaluation has been performed at a Child Development and Evaluation Center or if the child is receiving services through a state funded program, chances are that one person has been designated as a service coordinator or case manager. If this is not the case, you can ask for help from your pediatrician or family physician, local Autism Society of America chapter, your local school district special education department, or CARD. Some parents elect to perform this role themselves.
Parents and professionals communicating effectively and respectfully as partners is an important factor in achieving progress and success for any person with ASD or a related disability. Working as a team by sharing information and responsibility can be the most effective approach when developing a treatment plan. Parents often have the best understanding of their children’s behavior, communication, preferences, and motivations. Professionals may suggest various ways to help a child but parents know what activities are practical for their family life. Parental perspective is integral when developing an intervention plan. Professionals specializing in ASD have specific knowledge and training with regard to evaluation and development of education and treatment plans. By working together and respecting each other as equally important partners in a child’s care, parents and professionals can optimize the potential for a child’s development.
A Map for your Journey
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Diagnosing & Evaluating Autism Spectrum Disorder
Autism Spectrum Disorder is difficult to diagnose, especially in young children where speech and reasoning skills are still developing. A child may be three years old or older before the full characteristics of ASD are fully apparent. Typically, medical professionals are not trained extensively in diagnosing and evaluating for autism spectrum disorder. Doctors will usually rule out other possibilities before mentioning autism spectrum disorder.
Although ASD is considered a neurological disability, no one specific medical test or procedure can confirm a diagnosis of autism. To gather more information that will accurately profile an individual’s strength’s and needs, a variety of tests, assessments, and evaluations should be administered.
It is essential that the process of diagnosing ASD include the assessment and evaluation of an individual’s development, communication, and social skills. Knowing a procedure’s purpose and limitations can help you understand the results more accurately. Usually, professionals assessing children with developmental disabilities look to answer questions such as: What areas of development are affected? Can a specific disorder be recognized? What intervention approaches will be most effective? Evaluation and assessment are ongoing processes. Once a diagnosis has been determined, this process should be repeated periodically to track changes in an individual’s level of functioning and to be sure that the individual’s needs and opportunities are being optimized.
Direct Observation, Interaction, & Interviews Assessments: Information about a child’s emotional, social, communication, and cognitive abilities is gathered through child-directed interactions, observations of the child in various situations, and interviews of parents and care givers. Parents and family members should be actively involved throughout these assessments. What actually occurs during a specific assessment depends on what information parents and evaluators want to know.
The Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview (ADI) and their revisions are the “gold standard” for assessment today. Both have extensive research demonstrating good sensitivity and specificity (meaning that they don’t over or under-diagnose children too much when used appropriately). Both require extensive training, clinical experience, and practice and are used as part of a comprehensive evaluation. To parents, the ADOS may appear to be a jumble of toys and manipulatives the child and evaluator play with, but its items are designed to probe specifically for autistic traits and behaviors, and the evaluator rates the child’s behavior and approach to each item on a scientifically derived algorithm.
Play-based Assessments involve adult observation and partial participation in structured and unstructured play situations that provide information about a child’s social, emotional, cognitive, and communication development. By determining a child’s learning style and interaction pattern through play-based assessments, an individualized treatment plan can be developed.
Functional Assessments aim to discover why a challenging behavior (such as tantruming and head banging) is occurring. Based on the premise that challenging behaviors are a way of communicating, functional assessment involves interviews, direct observations, and interactions to determine what a child with autism or a related disability is trying to communicate through their behavior. Once the purpose of the challenging behavior is determined, an alternative, more acceptable means for achieving that purpose can be developed. This helps eliminate the challenging behavior.
Standardized Instruments are formal methods used to determine different levels of cognitive development. Sometimes when a disability is so significant that it affects an individual’s ability to speak, gesture, or move, special adaptations or modifications to existing standardized instruments will be necessary to get an accurate picture of an individual’s abilities.
Intelligence Tests (IQ), such as the Stanford Binet Intelligence Scale, Wechsler Intelligence Scale for Children (WISC), the Differential Abilities Scale (DAS), and their revisions, attempt to determine an individual’s intelligence based on standardized criteria. Scores are highly based on an individual’s communication skills, social skills, and ability to accomplish specific tasks. Individuals with autism and related disabilities may seem uncooperative, stubborn, or withdrawn while in fact the way a test is presented can be too difficult or complicated for them to comprehend. In addition, the individual may not understand the language or expectations of the test which can cause confusion and problem behavior. There are various ways that professionals can adapt a test to try and make it easier for an individual to understand.
Developmental Inventories such as The Vineland Adaptive Behavior Scales, ABAS, and Batelle Development Inventory are examples of standardized tests that measure a child’s general developmental skills including socialization skills and coping skills, and compare them to other children who are typically developing as a reference to come up with age or grade equivalent scores. These scores are obtained based on parent interviews and evaluator observations.
These standardized instruments do not necessarily measure a child’s true abilities, capacities, and unique potential to learn. Many times professionals label a child as “untestable.” This cannot be considered an accurate assumption, for the reasons mentioned above. It is also important to note that these instruments cannot diagnose ASD, and are only one component of a good diagnostic evaluation.
Work in Progress
Rating Scales are often provided for parents or teachers to complete. Based on the ratings provided, the scales are scored in a standardized manner to determine if the individual meets the criteria for an autism spectrum disorder. These rating scales may be used to screen individuals for further evaluation, or in conjunction with observations, standardized instruments, and diagnostic interviews or evaluations. The M-CHAT is used to screen for possible ASD in toddler well-child check-ups. The Autism Behavior Checklist, Childhood Autism Rating Scale, Gilliam Autism/Asperger’s Rating Scales, Asperger’s Syndrome Diagnostic Scale and others may be used by schools and medical professionals. These rating scales typically result in a rating of the likelihood that the individual has an autism spectrum disorder, but they are not definitive without additional evaluation.
MCHAT: https://mchatscreen.com/
Given the variety of theories about the causes of autism and related disabilities doctors may use various medical tests and procedures to help with diagnosis. There is not always a clinical need to do medical tests. Your doctor(s) can recommend when, or if, a test should be done. The following medical tests may help with diagnosis and possibly suggest changes in an intervention or treatment strategy.
Various tests such as an audiogram, typanogram, and the brain stem evoked response can indicate whether a person has a hearing impairment. Audiologists or hearing specialists, have methods to test the hearing of any individual by measuring responses such as turning their head, blinking, or staring when a sound is presented. If a hearing impairment is detected, treatment could involve minor surgery, use of hearing aids, or antibiotics. A hearing test should always be performed when autism is suspected, as hearing loss may cause delays in communication and socialization.
An EEG measures brain waves that can show seizure disorders. In addition, an EEG may indicate tumors or other brain abnormalities. Additional tests will be needed to make an accurate diagnosis of these conditions. During an EEG, sixteen small sensors are placed at various locations on the scalp to record brain waves that a neurologist interprets. An EEG may take one to 24 hours depending on the doctor’s goals when ordering the test. If seizure activity is detected, additional testing may be required and various medications could be prescribed.
Blood and urine lab tests measure how a person metabolizes food and its impact on growth and development. Some symptoms of autism spectrum disorders may respond to special diets. The following medical tests may help locate neurological factors that can affect typical development and could possibly identify or rule out a cause. Results will probably not change intervention or treatment.
- Magnetic Resonance Imaging (MRI):
An MRI involves using magnetic sensing equipment to create an image of the brain in extremely fine detail. The patient lies on a sliding table inside a cylinder shaped magnetic machine and must be still during the procedure. Sometimes patients are sedated in order to complete the MRI. - Computer Assisted Axial Tomography (CAT SCAN):
An x-ray tube rotates around the patient taking thousands of exposures that are sent to a computer where the section of the body that is x-rayed is reconstructed in great detail. CAT Scans are helpful in diagnosing structural problems with the brain. - Genetic Testing:
Blood tests look for abnormalities in the genes which could cause a developmental disability.
Some parents, especially those who have recently learned that their child has a disability, may feel overwhelmed when hearing test results. This is natural, and may stem from their lack of experience with evaluations, or because of a professional’s manner. Remember this is your child. You have the right to ask any questions you want. Asking questions is your first step in beginning to understand more about your child. Learning as much as you can, can have a profound effect on your child’s future. Your CARD coordinator can also help you to understand your child’s results.
Learn More about ASD.
Click below to read about ASD and related terms like Autism, Asperger’s Syndrome, & PDD-NOS.