Heading into an assessment can be an overwhelming experience for both caregivers and individuals on the spectrum. You may have waited a long time for the assessment and want to be as thorough as possible. Depending on the location, the assessment could be multiple. Getting prepared for your child’s assessment will help you to gather your thoughts and feel more comfortable throughout the process.
How is autism diagnosed?
In BC, there are strict guidelines and standards that are required to diagnose a child with Autism Spectrum Disorder (ASD). These standards and guidelines were developed by the British Columbia Autism Assessment Network (BCAAN). This program was created to deliver a network of clinicians (Qualified Specialists) who could assess and diagnose children who may have ASD. It was a ministry initiative, developed by BC’s leading experts in the field and provided by the Provincial Health Service Authority.
For a formal autism diagnosis, the assessor uses the DSM-5, which is the standard tool and reference guide for mental health clinicians to diagnose, classify, and identify mental health conditions. The criteria for diagnosing autism can be found here.
Preparing for your child’s assessment
To begin, collect and compile any evaluations, assessments your child has partaken in. Examples may include auditory exams, motor exams, or assessments from school. Connect with your family doctor or Healthline (call 811) to get access to various services that may apply to you and your child. Some services include:
Infant Development Program
Child Development Centres
Speech Language Pathology
When seeking out your assessor, do not be afraid to ask questions and find the right fit for your family. Questions could include:
Do you have experience with young children / youth / adults?
Are there hidden costs?
What are the current wait times?
Could I be added to a cancellation list?
Will you consider supplemental video or logs in consideration during the assessment?
Making lists or notes of your child autistic traits can be extremely helpful, although not required. Some helpful documentation may include:
Video or photos of your child’s autistic traits (i.e., lining up toys, stimming, toe walking etc.)
Any medical issues during pregnancy and birth
Signs of regression in development (Regression can include losing language or previously mastered skills)
Familial history of developmental, neurological, psychiatric disorders
A timeline of your child’s developmental milestones
Reports from other professionals such as doctors, teachers, and speech language pathologists.
Behaviours to note:
Not responding to their name
Not responding to facial expressions – for instance, not smiling back when someone smiles at them
Consistently preferring to play alone than with others
Not starting conversations in an age-appropriate way
Repetitive habits such as rocking back and forth
Difficulty with transitions
Difficulty with fine and/or gross motor skills
Seeming indifferent to pain
Becoming extremely fixated on one habit, activity, or object
Sensitivity to foods, textures, sounds and smells (autismdfw.org, 2022)
What to expect
Autism is a spectrum, and individuals show their traits differently. Your child does not need to check off all of these behaviours to be diagnosed. While some autistic children are speech delayed, others have an extensive vocabulary at an early age. Autism is a neurological, developmental condition, and is a meaningful part of your child’s identity. It shapes the way your child sees and interacts with the world around them. Autism may also appear differently in girls. For more information on autistic traits in girls, click here.
Your assessor will ask numerous questions and guide you and your child through the assessment. Do not worry about how your child will react, the assessors are trained to interact with your child and know what to look for.
The Assessment for Diagnosis of Autism Spectrum Disorder must include:
A history with the parent/caregiver (this may take 1-2 hrs)
The Clinical Diagnostic assessment by the Qualified Specialist (this may take 1-2 hrs)
A psychological assessment
A speech-language-communication assessment (a speech language pathologist does this)
A medical evaluation (a paediatrician does this)
If the assessment should suggest that ASD is unlikely/improbable, additional referrals should be made to help elucidate the initial cause of concern for the child.
Following the diagnostic evaluation, the team should provide the family with comprehensive feedback, including a written report that fully explains all test results. This feedback session and report should be presented in understandable language.
Waiting for assessment
While waiting for assessment, you can start to research interventions and supports. AutismBC offers a waiting for assessment workshop that would be useful during this time. Learn more about the workshop here.
Self-care throughout the process is important. Speak with family and friends, seek mental help supports, and remember if your child is diagnosed, it does not change who they are. An autism diagnosis will allow you to access funding, seek supports and better understand your child. There is a growing movement among autistic adults to celebrate their neurodiversity and to see autism in a positive context. Connecting with others on a similar journey will empower you to find your voice, and advocate for your child’s needs both during and after their assessment.