After the long process of having your child assessed for autism, most of us assume that once we receive the diagnosis, a clear, well-laid-out path will be set out for us to follow. In reality, you have likely been handed a large binder or stack of papers and off you go! The information can be overwhelming and it’s hard to know where to start. You are ready to take on this new challenge…but it’s completely unclear how to do that.
We’ve been there. Having been parents new to diagnosis ourselves at one time, we gathered some resources, directions, and tips that our former selves would have liked to have when our children were first diagnosed.
A New Autism Diagnosis: What Do I Do Next?
The first important step is to be kind to yourself. Leave space for yourself, other household members, and, most importantly, your child to process this new diagnosis. Consider not planning anything productive on your assessment day(s) and possibly a few days after.
Try to be curious, gentle, and respectful about other people’s feelings and your own. Even when you have been expecting a diagnosis, the way you feel or react may be different than you anticipated. Create a safe space for everyone to process and feel heard, validated, and supported.
Take your time. You do not need to make decisions right away. Waitlists may be long and there is a lot to do, but be mindful of your family units’ general well-being. Do not rush into things, take some time to learn about and discuss options and add new commitments one by one.
VIDEO: Once we have an autism diagnosis, how do we decide what to do next? – YouTube
“Find your people, ask for help, talk, cry and live on.” — Paula, a parent
Who Do I Tell About My Child’s Autism?
It is you and your child’s story to share or not share. Whenever possible, include your child in this decision. Talk with them and ask if and how they would like to share with family, friends or other community members. Connect with autistic self-advocates or other parents; ask about their experiences with disclosure, and how this can help guide you and your child.
VIDEO: If and how can I explain my child’s diagnosis to friends and relatives? – YouTube
“Build a positive connection with the teacher right away and ask lots of questions about how they can/are supporting the child day-to-day.” —Jane
What Do I Need to Learn About Autism?
Being a parent comes with so much learning. When adding an autism diagnosis into that journey, it can be difficult to know where to begin. We’ve found a helpful place to start is with understanding the terms commonly used when discussing autism.
Language is complex, ever-evolving, and everyone has their own personal views. If possible, ask the person themselves how they would like to be identified. Some people prefer person-first language such as “person with autism” or “person on the autism spectrum” while others prefer identity-first language, as in “autistic person.”
You may also come across labels like “high functioning” and “low functioning.” These terms are being phased out as such labels can cause a lack of respect for the individual. They can minimize a person’s abilities or make it more difficult for them to access the support they need. Labelling a person as “low functioning” implies they are somehow less than and puts focus only on what they are unable to do. Labelling a person as high functioning creates the idea a person may face little to no challenges and therefore does not require any support. We can be aware of a person’s challenges and acknowledge their strengths without the use of dehumanizing labels.
Learn more here: The Importance of Inclusive Language
“Find your people and do what works best for YOUR child.” —Crystal
VIDEO: When and how do I tell my child they are Autistic? – YouTube
Autism Professionals and Acronyms
With so many acronyms associated with the professionals who can work with your child, it can be like learning a whole new language! Here is a brief run-down of some common ones:
- Behaviour Consultant (BC) often works in a client-centered collaborative program that includes family members. They may work with different therapy styles and methods such as Relationship Development Intervention (RDI), Applied Behaviour Analysis (ABA), Cognitive Behaviour Therapy (CBT), or a neuro-diverse affirmative model.
- Behaviour Interventionist (BI) works with a client to implement the Behaviour Plan of Intervention (BPI) under the supervision of a Behaviour Consultant or Board Certified Behaviour Analyst.
- Board Certified Behaviour Analyst (BCBA) designs, oversees, and implements a Behaviour Plan of Intervention using Applied Behaviour Analysis. They must be registered with the Behaviour Analyst Certification Board (BACB).
- Board Certified Assistant Behaviour Analyst (BCaBA) assists in developing, delivering, and implementing intervention plans under the supervision of a Board Certified Behaviour Analyst. They are also registered with the Behaviour Analyst Certification Board.
- Registered Behaviour Technician (RBT) implements intervention plans under the supervision of a Board Certified Behaviour Analyst and is also registered with the Behaviour Analyst Certification Board.
- Occupational Therapist (OT) – An occupational therapist helps people of all ages overcome challenges completing everyday tasks or activities – what we call ‘occupations’.
- Speech Language Pathologists (SLP) work to prevent, assess, diagnose, and improve speech, language, social communication, cognitive-communication, and swallowing for children and/or adults.
- Physical Therapy [Physiotherapist] (PT) is care that aims to ease pain and help you function, move, and live better. You may need it to relieve pain or improve movement or ability.
Our Autism Glossary Blog can help with learning and understanding new terms.
“Create a binder or something to hold all documents. Diagnosis, tests, reports from schools, daycare, etc. […] Recognize your advocacy role and how important it is for your child that you’re a consistent, positive and clear communicator” —Ingrid, a parent
How Do I Create My Child’s Support Team?
Creating a team to support your child can seem like a daunting task. Depending on your child’s age, their needs, and resources available in your area, this can look different for everyone. Seek out advice and experience from other families. People travelling on a similar path have valuable insight and support to share. Join parent/caregiver Facebook groups or email lists and ask other parents about their experiences or recommendations.
Things to think about in building your team:
- What is most important to my child?
- What do I need to better support my child?
- What support is available?
- What is the financial cost (if any)?
- What are the priorities?
- Do we have time/space in our schedule?
Some of the people who may be on your team:
- Other parents, caregivers, family members
- Behavioural Consultants (BC/BCBA)
- Occupational Therapist (OT)
- Speech & Language Pathologists (SLP)
- Physiotherapists (PT)
- Social Workers
- Psychologists/ Psychiatrists
- Support Staff (Behavioural Interventionists/ Educational Assistants)
Setting Up a Team – Autism Funding in BC
Setting Up a Team – Autism Information Services (BC Gov)
Registry of Autism Service Providers – “is a list of professionals who have the experience and education to offer programs for children with autism. If your child is under six and you want to use autism funding to pay for services, you need to choose service providers from the RASP.” (Government of BC, 2021) NOTE: Behaviour Interventionists are not part of the RASP list.
Hire & Manage Service Providers (Government of BC, 2021)
ACT’s New Diagnosis Hub (ACT, n.d) – includes information on hiring professionals, questions to ask, red flags.
Tips for building your Team
- Reach out to other families and look for feedback.
- Interview several professionals (you should not be charged for a meet and greet).
- Pause and take a breath, you can only do so much every day.
- If something isn’t working the team should consult with the family.
- Parents/caregivers know the child best.
- Your child may not need all services. Maybe they need OT but not speech or vice versa.
- Professionals should be mindful of family dynamics and cultures.
- Families should be involved with program development and consulted regularly.
- If you have a home based team, there will be people in your house frequently, be kind to yourself. It’s okay if the house is a bit messy and you answer the door in your bathrobe!
Questions to ask
- Ask about staff turnover rates.
- Find out if behaviour interventionists receive extended benefits and what their compensation is, as this may affect turnover rates.
- Get to know their philosophy on stimming (self-stimulation). A professional who wants to extinguish harmless stimming is a red flag. The act of flapping your hands isn’t harmful, so no need to extinguish it; however, biting yourself is harmful, so that behavior should be replaced.
- Ask about availability.
- Ask about transportation available for the child and the team member.
- Do they have an updated criminal record check?
- Ask how they will handle various scenarios (e.g. elopement, meltdowns, physical aggression, not meeting program expectations).
- Ask a potential provider about their training and direct experience specific to skills or behaviours their child is experiencing (e.g., Augmentative or Alternative Communication, self-injurious behaviours, conversation skills, friendship skills, or others).
When looking for a Behaviour Consultant:
- It needs to be someone you would be comfortable working closely with.
- Ask for details about their intervention approaches, experiences, etc.
- How often do they see the kids, monitor programs, meet with parents
- How is billing done? What are fees?
- Do you hire your own BIs? Do you train them?
- Do you collaborate with other professionals?
- Do I know exactly what you are doing and why before I agree to you doing any programs with my child? Will all my questions be answered before I agree to it?
- During the current period of funding availability, how will you prepare me to become my child’s behavior and learning expert so that I do not have to rely on outside help when funding will decrease and eventually disappear?
Groups to help find these team members. In addition to the Registry of Autism Service Providers (RASP) List
“Seek out a support group, it has been so good on so many levels for us. Learn from others so you aren’t reinventing the wheel, you will need your energy for other things.” — Judy, a parent
VIDEO: How do I set priorities when choosing therapy or interventions for my child? – YouTube
VIDEO: How do I support & advocate for my child in the medical model & maintain our culture and values? – YouTube
Almost everything you need to know about autism funding available in BC can be found through Autism Information Services (AIS). We also have an Autism Funding blog with key information and other resources to help along the way.
How Do I Access Autism Funding?
*Process through Ministry of Children & Family
How Do I Access My Portal Services?
Register for a BCeID
Once your BCeID is complete, click “log in” at the top right of the screen.
- Click continue at the bottom of the page
- You now have access to the portal
- Click on the second section called “My Cases.” Across from your child’s name click “View Details.”
- You should see “Welcome to Autism Funding.” On this page are videos to help you navigate the portal.
- At the bottom of this page, click “Go to My Autism Funding Dashboard.” Here you can see what funding your child has available, what service providers you have allocated funding to, etc.
Check out these short, helpful, how-to videos by the Province of BC: My Family Services – Overview
Other Available Funding:
Autism Related Benefits and Taxes
RDSP Tips & Resources
Disability Tax Credit (DTC)
Funding & Accessibility Services You Need to Know About!
“Be kind to yourself. […] Take baby steps, don’t try to do everything at once, this is a marathon not a sprint” — Lisa, a parent