Autism Spectrum Disorder is a neuro-developmental disorder that affects how a person communicates, interacts with others, and behaves. It is considered a spectrum disorder, meaning that there can be countless variations in the presentation of symptoms, resulting in there being no one specific way that autism looks or presents. Similarly, there is no specific test for autism that is the best. The assessment process will vary depending on the type of practitioner you see, the age of your child, and presentation of their symptoms.
In Ontario, autism can be diagnosed by qualified and trained professionals including the following, if they have undergone specific training to assess and diagnose autism:
• Medical doctors such as family physicians, pediatricians, developmental pediatricians and psychiatrists
• Psychologists and psychological associates
• Nurse practitioners
You can make an appointment with any of these professionals directly at their office, or you can contact one of Ontario’s five diagnostic hubs to get on a waitlist for an autism assessment via a multi-disciplinary team. If you choose to see a medical provider or to go to a diagnostic hub, the cost of the assessment and diagnosis is covered under OHIP, but the waitlists are usually years long. If you choose to work with a practitioner in private practice, you will be billed for the assessment, but will likely have the assessment completed sooner.
Depending on who you see, the assessment process can vary, as long as the basic required information is obtained. Your practitioner will need to collect information about your child, using whatever methods they are trained in, to determine whether your child is presenting with symptoms within the two broad categories required by the DSM-5
• Differences in social-communication skills, verbal and nonverbal communication, play, and understanding and establishing friendships and relationships.
• Repetitive and restricted interests, repetitive behaviours, rituals and compulsions, resistance to change, and sensory interests or aversions.
A basic assessment might simply include a parent interview and a short clinical observation to determine the presence or absence of autism symptoms.
A more comprehensive assessment will also attempt to measure your child’s cognitive abilities, adaptive skills (independent daily living skills for their age), graphomotor skills, language / vocabulary skills, attention, and self-regulation skills. The comprehensiveness of the assessment will vary depending on the practitioner you see, so it’s always advisable to ask about the components of the assessment before choosing a practitioner.
Information can be collected using a combination of questionnaires, interviews, clinical observations, and direct testing. There is no rule about which methods or tools must be used. There are several questionnaires, standardized interviews, and standardized tests to choose from. For this reason, the single most important factor in obtaining a valid assessment and accurate diagnosis is the training and expertise of the practitioner you choose.
Questionnaires may be simple checklists or may be standardized, normed screeners and rating scales (these contain scores obtained from a representative sample to which you can compare your child’s score). Questionnaires are often used to determine if there are sufficient concerns to move ahead with an assessment. Sometimes they are used as part of the assessment data, to obtain information from third parties such as daycare providers or classroom teachers. Questionnaires are also often used to gather other types of information about your child’s functioning, such as their attention, self-regulation, or their independent daily living skills, which are all important elements in understanding your child’s unique profile and the areas and degree of support they will require. Questionnaires are almost always included in assessments.
Your practitioner will also likely complete a diagnostic interview with you, to find out detailed information about your child’s development, your family history, other medical concerns or diagnoses, how your child interacts with others, responds to others, communicates with others, plays with other children, and also about restricted and repetitive interests and behaviours. This interview can be an informal list of questions that your practitioner uses, or a standardized interview that includes scores, the most popular of which is the Autism Diagnostic Interview – Revised (ADI-R). Regardless of the type of interview used, the training and experience of your practitioner is again the most important factor in identifying behaviours of concern.
Clinical observations and Standardized tests
Direct observation is usually a component of an autism assessment, and can range from 15 minutes, to several hours, depending on the practitioner you see. During this observation, your child’s social interactions, communication with others, interests, and behaviors are observed. Often this takes the form of a play-based session where your practitioner will attempt to interact, speak, and play with your child. You may or may not be invited to stay in the room during these sessions, depending on the age and needs of your child. These can be informal play observation sessions, or structured / semi-structured standardized observations such as the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2). The ADOS-2 is broadly considered by many as the ‘gold standard’ for direct observation in the assessment of autism because it is sensitive, specific, and reliable (when administered by a trained, experienced practitioner). However, the ADOS-2 is not required for a valid autism diagnosis in Ontario. Rather, a clinical observation by a trained and experienced practitioner is the most important factor.
If you have chosen a practitioner who provides comprehensive assessments, other types of direct testing might include standardized tests of cognitive ability (general knowledge, reasoning, problem solving, memory, speed), fine motor skills (drawing, copying), and receptive / expressive vocabulary (pointing to pictures or naming things).
Autism Assessment Report and Diagnosis
The entire process can take one day, or may be broken up over several days. A diagnosis might be provided right away (for example, if you see a physician) or you may be asked to wait several weeks for a final feedback meeting and report (for example, if you see a psychologist). The report usually contains descriptions of your child’s strengths and needs, test results and scores, observation data, any diagnoses made, and a list of recommendations and resources for moving forward.
While the information you receive at the end of the process may vary in comprehensiveness depending on the practitioner, the diagnosis that you receive holds the same medical validity, and has the same power to access resources, regardless of which practitioner you saw, and regardless of the comprehensiveness of the report. Once you receive the written diagnosis, you are able to move forward and apply for services and funding, such as through the Ontario Autism Program.
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