How to Get a Diagnostic Evaluation
for an Autism Spectrum Disorder
By Dr. Laurie Stephens
The prospect of seeking out a diagnostic evaluation for a child can seem overwhelming and scary to many parents. Most parents say that they did not even know what their first steps should be. As with many areas of getting services for children with Autism Spectrum Disorders, the exact procedure to getting a diagnosis may vary from state to state. Below you will find the general guidelines to follow to ensure that a child receives the most accurate diagnosis.
I) Talking with Your Pediatrician
- As soon as you first suspect that your child may be developing differently, you should immediately raise your concerns with your pediatrician.
- It is recommended that you make a specific appointment to discuss your concerns, rather than bringing them up at your “well baby visit.” This way your pediatrician will be prepared to listen and spend the time it takes to review and assess your concerns.
- If they have not done so already, your pediatrician should be encouraged to use a screening tool to determine if your child shows any developmental delay and is in need of further evaluation.
- There are two kinds of screening tools 1)general screens which assesses for any developmental delays and 2)specific screening instruments which look for signs of a particular disorder. The two most widely recommended general screening tools are:
- Ages and Stages Questionnaire (ASQ); Bricker (99), Paul H. Brookes Publishing
- Parents Evaluation of Developmental Status (PEDS), Glascoe, Ellsworth & Vandermeer Press, Ltd
- The two most widely recommended screening tools that are specific to autism are:
- Checklist for Autism in Toddlers (CHAT); Baron-Cohen (92), British Journal of Psychiatry
- Modified Checklist for Autism in Toddlers (M-CHAT) Robins, Fein, Barton & Green (01); Journal of Autism and Developmental Disorders
II) Pursuing a Clinical Diagnosis
- Most pediatricians do not do a full, clinical assessment of a child. Rather, they screen the child to determine if further evaluation is needed, and provide recommendations as to where to go next. Families will often be referred to one of the following professionals for a full, clinical assessment to determine if the child meets the diagnostic criteria for any autism spectrum disorder:
- Child Psychiatrist
- Child Clinical Psychologist
- Pediatric Neurologist
- Developmental Pediatrician
- Many clinics that specialize in the differential diagnosis of ASD often have extremely long waiting lists. You should always place your child on the waiting list as soon as possible, even if you are going to seek services at another clinic if they have a shorter waiting list. However, it is important that you remember to cancel your child’s place in the queue if you do decide to go to a different facility. Many clinics also have “cancellation appointments” which means that a child from the waiting list is called when another family cancels their appointment. Be sure to ask the clinic if they offer cancellation appointments. If you do make this kind of appointment, you should be prepared to show up at the clinic on very short notice.
- Be sure to show up to your appointment ready. Have all necessary paperwork filled out completely. Also, remember that you will be asked many questions about your child’s development. If you aren’t sure whether you will recall all the relevant details, feel free to bring in baby record books, medical records and even early videotapes of your child (such as a first birthday party).
III) Diagnostic Evaluation
- No specific “test” can be given to determine if a child has ASD. The diagnosis should be made through a series of assessments, observations and a detailed developmental history.
- Since there is no clear test for ASD, clinical judgment plays an important role in the diagnostic process. This means that clinicians need to rely on their knowledge and experience with the full range of children with ASD in order to make an accurate diagnosis. Seeking out a professional who specializes in the diagnosis of ASD is highly recommended.
- Remember there is no one symptom that leads to a diagnosis (e.g. lack of eye contact), nor the presence of any one symptom that rules out the diagnosis (e.g. does not engage in self-stimulatory behavior). A child must display several symptoms in each of the three core areas (language, social, behavioral) in order to receive a diagnosis within the autistic spectrum.
- Researchers are identifying some of the earliest markers of autism, which means that children can get an accurate diagnosis at a younger age. It is important to know the early warning signs of autism, so that you can seek out screening and diagnosis at the earliest time possible.
- A thorough diagnostic evaluation should consist of the following components:
- Review of the child’s medical records, school records and previous evaluation reports
- A comprehensive developmental history collected by interviewing the parents or primary caregivers. This may include administration of the Autism Diagnostic Inventory (ADI) (Lord & Rutter)
- Administration of the appropriate module of the Autism Diagnostic Observation Schedule (ADOS) (Lord, Rutter & DiLavore)
- Rating scales filled out by parents, teachers and children when appropriate. These rating scales should include behavior scales, social skills scales, child development checklists, and adaptive living scales
- A school observation
- Psycho-educational/Neuro-psychological testing when indicated (cognitive assessments are not necessary in the diagnosis of ASD)
- A feedback session with the family to share results, clinical impressions and provide recommendations
A detailed written report providing the developmental history, medical history, current presentation, results from all assessments, the diagnostic decisions and recommendations.
What to do if your child is diagnosed with an
Autism Spectrum Disorder?
If your child is diagnosed with any of the Autism Spectrum Disorders, early intervention by trained professional is key to enabling the
child with autism to achieve their fullest potential.
Intervention during the time when the brain displays the most plasticity affords the opportunity to “rewire” the brain often resulting in the children being able to make significant gains in many areas.
- As more and more children are being diagnosed at younger ages, there is a greater demand for intensive early intervention services, particularly for those children who receive the diagnosis under the age of three.
- Research has shown that some very young children with autism, who receive intensive early intervention, may require significantly less intervention when they are school-aged. Thus, early diagnosis and intervention can make the most critical difference in a child’s long-term prognosis.