Under 6 Years-Old Autism Assessment Guide

BC Autism Assessment Network (BCAAN)

BC Autism Assessment Network provides MSP-covered (free) assessment for children in various diagnostic centres around BC.   To access this service,

  1. Referral from a physician or pediatrician
  2. A hearing assessment
  3. A vision assessment
  4. Then wait 80.6 weeks.

Then, the family will be provided with a 30-minute consult with a BCCAN pediatrician who will provide primarily screening to see if the child presents with stereotypical symptoms of autism spectrum disorder, such as lack of eye contact and stereotypical repetitive restrictive behaviour such as flapping hand or yelping.  If the child presents with some eye contact and some capacity to sit still and answer the doctor’s questions or seems even slightly socially motivated, they will very likely be ruled out.  If this happens, this is unfortunately the end of the investigative pathway for the family through BCCAAN.

If you are ruled in, then the multidisciplinary specialist teams at the BCCAN centre will assess your child for autism and provide an answer.

BCCAN diagnostic system does not recognize the non-sterotypical presentation of autism.

Private Assessment (non-BCAAN)

Unfortunately, BC’s has a two-tier medical system where patients can receive higher quality services around autism assessment and diagnosis through the privately paid and expansive medical system.  The private system can be challenging to navigate for families.

Required assessment components for under 6 years old children

ADIR + ADOS Assessment Performed by a psychologist, a developmental pediatrician, or a psychaitrist
Cognitive Assessment Psychologist
Pediatric Medical Assessment Pediatrician
Speech Language Assessment Speech and Language Pathologist

Autism assessors vary drastically in competence with the diverse autistic profiles. The community has curated a recommendation list that is not accessible publicly. Contact Cherish Clinic for consultation and targeted referral for non-sterotypical presentations.

The First Step

The family needs to decide who will perform the ADIR and ADOS: a psychologist, developmental pediatrician, or psychiatrist.  Specialists require additional training to be qualified to offer ADIR and ADOS, so not all psychologists or pediatricians can perform them.  Due to rarity, we will skip psychiatrists for this discussion.

What is ADIR and ADOS?

What is ADIR?

ADIR stands for the Autism Diagnostic Interview-Revised. It is a comprehensive interview tool used by trained professionals to assess autism spectrum disorders (ASD) in children and adults. The ADIR involves an in-depth interview with the parents or caregivers of the individual being evaluated. It covers various aspects of the individual’s behaviour, development, and history, focusing on areas related to social interaction, communication, and repetitive or restricted behaviors—key areas affected by autism.

Key Points About ADIR:

  • Structured Interview: The ADIR provides a structured framework for professionals to gather detailed developmental history and current behaviour.
  • Parent/Caregiver Involvement: It requires significant input from parents or caregivers, who provide valuable insights into the individual’s developmental history and current functioning.
  • Comprehensive: The interview covers a wide range of topics, ensuring a thorough assessment of symptoms related to ASD.

What is ADOS?

ADOS stands for the Autism Diagnostic Observation Schedule. Unlike the ADIR, which relies on interviews with caregivers, the ADOS is a direct assessment tool where the professional observes the individual in a structured setting. During the ADOS, the evaluator engages the individual in various activities designed to elicit behaviours and skills relevant to the diagnosis of ASD. These activities assess areas like communication, social interaction, play, and imaginative use of materials.

Key Points About ADOS:

  • Direct Observation: The professional observes and assesses the individual’s behaviour directly in a controlled setting.
  • Structured Activities: Through a series of planned activities, the ADOS provides consistent scenarios to observe and evaluate behaviours related to ASD.
  • Versatile Application: The ADOS can be used with individuals across a wide age range and varying developmental levels.

Why Are ADIR and ADOS Important?

Both ADIR and ADOS are crucial in the accurate diagnosis of autism spectrum disorders. They complement each other, with the ADIR providing a detailed behavioural history and the ADOS offering a snapshot of current behaviours. This combination allows professionals to make informed decisions regarding the presence of ASD, facilitating appropriate intervention and support.

  • Comprehensive Assessment: Together, they offer a holistic view of the individual’s abilities and challenges.
  • Evidence-Based: Both tools are widely recognized and used globally, backed by extensive research and clinical validation.
  • Informed Interventions: An accurate diagnosis is a critical step toward getting the right support and services, and these tools play a pivotal role in that process.

Not all psychologists or pediatricians are trained in ADIR+ADOS. Very few pediatricians perform ADIR+ADOS.

If you have chosen a psychologist to perform the ADIR+ADOS, they will perform the cognitive assessment at the same time.

If you have chosen a pediatrician to perform the ADIR+ADOS, they will perform the pediatric medical assessment at the same time.

The pediatricians who perform ADIR+ADOS are called developmental pediatricians. Some regular paediatricians offer this assessment but this is very rare.

In most situations, families will receive an ADIR+ADOS assessment from a psychologist:

Booking an Autism Assessment with a Psychologist

  1. Contact the different recommended offices to ask about the waitlist and fee for the specific assessors
  2. Inquire about cancellation waitlists
  3. Ask if the assessor accepts third party documentation. If they say no, this is a red flag.
  4. Ask if the assessment fee includes a parent session to discuss the result after the assessment is complete (before or after the report is complete).

Cognitive Assessment should be automatically included.

Booking a Developmental Assessment with a Pediatrician

1. Schedule an appointment with your pediatrician. On the phone, tell the front desk that you need “the medical assessment portion done by a pediatrician for the under 6 autism assessment” and this should be a longer appointment.

 

I don't have a pediatrician

Go to your family doctor and request for a referral to a pediatrician for “the medical assessment portion done by a pediatrician for the under 6 autism assessment”.

I don't have a family doctor
  • Go to a generalized walk-in clinic To visit a walk-in clinic, you do not need an appointment.
  • You can find a walk-in clinic near you at medimap.ca and check for wait times and hours. Alternatively, you can get information about local walk-in clinics by calling 8-1-1 Healthlink BC or searching their online directory. At walk-in clinics, doctors may see you more than once for follow-up, but not always. It’s possible to get a different doctor each visit. If needed, you can ask for a referral to a pediatrician or mental health clinician at a walk-in clinic. Generally, visits to doctors are free of charge if you have a BC Services Card/CareCard. Visits are also free if you have temporary coverage from the medical services plan in another province, except for a few specialized services.
  • Online Medical Platforms such as Telus Health Care and Maple
  • Find doctors taking new patients To find a family doctor in your community who is accepting new patients, call HealthLink BC at 8-1-1. They can also provide information about any waitlist services available. It’s recommended to join the waitlist if there is one, as having a family doctor is crucial for your child’s ongoing care.
  • First Nation Virtual Doctor of the Day call 1-855-344-3800 to book a virtual visit for culturally safe healthcare.
My family doctor or pediatrician will not refer or wants to explore ADHD first.

If your doctor shows doubts, refusal, or reluctance to support your concern about your child’s development and you do not have the option for an alternative provider in your region. Contact Cherish Clinic to speak to our medical advocate.

Cherish Clinic has a list of recommended pediatricians.

Vision and Hearing Assessments and Other Tests

As standard procedure, your family doctor or pediatrician would also refer you to a vision and hearing assessment in conjunction with referring you to a pediatrician.  This is an MSP-covered assessment with a pediatric optometrist and a simple hearing test.  There may also be blood tests, genetic tests and all these are great but these are all optional for the autism assessment process.

Booking Speech and Language Assessment with a Speech Language Pathologist

Schedule an appointment with a speech-language pathologist. Make sure they know this is for “the speech assessment for the under-6 autism assessment”.

How do we know which speech therapist we should book with?

If you are not using a Cherish Clinic vetted ADIR+ADOS assessor, a quality speech-language assessment is crucial in terms of advocacy and reducing the chance of a false negative outcome. If you are using one of the vetter assessors, you can just prioritize short wait time and cost savings.

Here is the SLP directory

 

Which assessment should we book first, second and third?

There is no order.  We recommend that parents book everything as soon as possible.

 

We are booking ADOS+ADIR with a developmental pediatrician instead

Then, you can reach out to any psychologist for a cognitive assessment. If you are using a Cherish Clinic vetted ADIR+ADOS assessor, you can prioritize short wait time and cost savings.

 Remember that you still need the speech assessment.

Note: Autistic children tend to underscore on this cognitive assessment. Please do not be alarmed. Your child is fine.

 

What Can I Do to Prepare for the Assessment?

  • Prepare copies of third-party documentation. This can be reported by infant and development specialists, supported childcare consultants, preschool teachers, and therapists.
  • Camile Long has a 100-page worksheet to help parents understand what autism is and prepare for the assessment, starting from page 28 are categorized worksheets to help you identify relevant behaviours.

If you were referred to this guide from Cherish Clinic as a part of your screening, Christine would have likely provided instructions on which behaviours to document or record while waiting.

How can I prepare my child for the assessment

It is important for the assessor to assess the child, not on their worst day or best day, but similar to their regular self.

Sometimes the child is too inconsolable (full meltdown or refusing to enter the office) and the assessor would not be able to perform their assessment, so it is helpful to front-load your child beforehand. Such as “We are going to meet an adult who knows a lot about our brain and how it works, there will be toys, and this adult will play with you and maybe ask you some questions.” Children are typically not separated from their parents during the assessment.

🔥 Some parents would ask their children to mask their autistic behaviours, such as reminding them to make eye contact, please do not do this. This is like trying to reduce your child’s fever before a doctor’s appointment to prevent the doctor from identifying an illness.

 

What will the assessment process be like?

Assessments will involve paperwork, questionnaires, parent interviews, and child observations. Sometimes they are on the same day or sometimes on different days. You can submit third-party documentation along with your intake paperwork.

⚠️ If your assessor refuses third-party documentation, this is a red flag.

Post-assessment meeting!

💡 We highly recommend that ALL caregivers and important extended family members (grandparents) attend the post-assessment meeting with the assessor conducting the ADOR+ADIS. Often, grandparents may have difficulty accepting, processing, and understanding their relatives’s diagnoses and this can lead to unnecessary heartbreak and conflict later.

Pre-Assessment Considerations

Extended Health and Life Insurance

Having an ASD diagnosis may impact the child’s ability to obtain private life and health insurance. If you have been planning to purchase these types of insurance, obtaining this insurance BEFORE booking any assesssment would be helpful.

Autistic children commonly benefit from ongoing counselling, and speech and occupational therapy.
For self-employed or small business owners, you can consider Health Savings Plan as a way to alleviate some financial burden that comes with the high therapy costs.

Immigration Status

If you are applying for immigration to Canada, please contact an immigration consultant to discuss how this may impact your immigration application.

As of 2023, the medical inadmissibility threshold is $128,445 over 5 years ($25,648 per year). The current cost level for services for autistic children who are diagnosed with levels 2 or 3 may exceed this threshold in British Columbia.

Having an autism diagnosis may also impact immigration and medical coverage in other countries.

Federal and Provincial Benefits
  • The provincial government provides $22,000 per year per autistic child under 6 years old. As soon as you have a diagnosis, you can apply for this funding and the funding start date with the diagnosis date on the main report.
  • With a positive diagnose the family may also qualify for a disability tax credit which provides tax reduction, rebate, and registered disability saving plan. There are also additional childcare-related funding and other resources.
Federal and Provincial Benefits

The provincial government provides $22,000 per year per autistic child under 6 years old. As soon as you have a diagnosis, you can apply for this funding and the funding start date with the diagnosis date on the main report.

Other Siblings and Family Members

There are strong genetic links for autism and if there are any suspicions about the neuro profile of other siblings or parents, it is helpful to begin the detective work now. This extra attention can also help the siblings feel included in this process.
Even if the family member is not blood-related, neurodivergent people tend to be attracted to each other, and there is still a strong possibility of neurodivergence.

Financing the Assessment

Extended Health Insurance

Different extended health benefits would have different rules, but most assessors are very flexible about how things need to be billed. Some examples:

  • Service name: instead of assessment which some benefits do not cover, you can ask for different names such as “psychological service.”
  • Split billing: some assessors can bill the service as multiple sessions and under different names. They can bill it under the parents who attended the sessions with their child.
  • Not all assessors have flexible or split billing options. Inquire before booking.
  • Very few extended health plan covers private services from pediatricians.
Variety Charity Funding

If the family’s annual income last year was below $85,000, you are eligible to have the whole assessment expenses covered by Variety’s Child Fund. Christine’s report can serve as third-party documentation for this application. If you are slightly over or have extenuating circumstances, they may be able to make a one-time exception.

Warning: Variety has a small list of eligible assessment partners that the family must choose from.  Understandably, this helps the charity control its costs.  Please evaluate your assessor choices carefully.  Consult with Cherish Clinic or family communities for recommendation and information.

BC Centre for Ability

BC Centre for Ability provides Speech language therapy and occupational therapy for free for children under 6.  Their SLP can perform the speech portion of the assessment. 

Disability Tax Credit (DTC)

if your income was above $85,000. If you have a family physician or pediatrician would is willing to sign off on it, you can apply for DTC without a diagnosis and the tax rebate from the application can help in covering the assessment. However, DTC is tricky and people have been denied due to not using the right language.

Jorden's Principle

If your child qualifies and you can magically find an assessor who is willing to go through the hoops and loops to apply for this funding…. Anyway, they technically would fund autism assessment….

    What Else Can I Do Now?

    Preschool/Daycare
    • Step 1: Contact Supported Childcare. Inform them that you have booked an assessment for autism. Ask them to intake you and also waitlist you for future support If your child’s needs may potentially impact your employment or job, please let them know.
    • Step 2 Contact the Developmental Disability Association for additional support.  They also have their own preschool/daycare centres which we highly recommend.
    Waitlist for Therapies

    Good services providers have 1-2 year waitlist, so it is worth waitlisting while waiting for the assessments.

    Speech-Language Pathology (SLP)

    Inquire waitlist with an SLP in your area. If you would like AFU to cover this service, let them know your assessment date and ask how early can they begin. Do they need to wait until the AFU funding is approved or can they begin as soon as there is a positive diagnosis?

    ⚠️ If your family’s primary language is not English, I want to emphasize strongly that the family’s natural language should not be lost in the therapy process. I highly recommend looking for an SLP who can provide the service in your primary language.

    Occupational Therapist (OT)

    A good occupational therapist would have a 3-6 month waitlist, so it is helpful to waitlist earlier. Inquire waitlist with an occupational therapist in your area. If you would like AFU to cover this service, let them know your assessment date and ask how early can they begin. Do they need to wait until the AFU funding is approved or can they begin as soon as there is a positive diagnosis?

    Family Consultant

    The top family consultants in BC have a 1-2 year waitlist. I would highly recommend waitlist as soon as you can. A family consultant would be the main service provider who supports the family in different areas of their lives and teaches parents the knowledge and skills required to meet their child’s unique needs. Investing in a good family consultant would also help reduce the family’s reliance on therapists over time especially after the funding is reduced to $6000 after 6 years old.

    Read more about family consultants here.

    Online Information and Support Groups

    Kerry Schroeder has a Neurodiversity Parenting 101 class that we highly recommend. 

    Here is a guide on learning to learn about autism.

    Large trove of social media recommendations for free, passive learning and humour.

    Cherish Clinic recommends this family support group.

    Other Resources