Next Steps After Your Child’s Autism Diagnosis
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’.
- Learn More Autism BC Talks: What is OT? (VIDEO)
- 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)
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.
- Ask about staff turnover rates.
- Ask what the compensation is for Behaviour Interventionists and if they receive extended benefits (this may affect turnover rates)
- Ask about their philosophy on stimming (self-stimulation). If a professional is looking to extinguish stimming (self-stimulation) that isn’t harmful that is a red flag. For example, flapping your hands isn’t harmful so no need to extinguish it, biting yourself is harmful and that behaviour should be replaced.
- 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!
Groups to help find these team members. In addition to the Registry of Autism Service Providers (RASP) List
- Respite, Caregivers & BI’s for Individuals with Special Needs in B.C.Canada | Facebook
- Behaviour Intervention Jobs BC | Facebook
- Behaviour Interventionists of B.C. | Facebook
- ASD, SPD, Special Needs Therapy and Support Providers in BC | Facebook
- Support Worker Central
“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
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
Autism Q and A: Next Steps After Your Child’s Autism Diagnosis
Cecilia answers: Once we have an autism diagnosis, how do we decide what to do next? If you're new to the autism world as a parent or caregiver, we have put together some resources for you on our website. 1. Waiting for Assessment: https://www.autismbc.ca/blog/waiting-... 2. A New Autism Diagnosis, what do I do next?: https://www.autismbc.ca/blog/autism-d... About Cecilia: Cecilia is a parent of 2 children diagnosed with autism. She is always trying to find opportunities for her children to be able to participate in an inclusive and meaningful way. She believes in equality for all individuals and wants to continue to spend her time on projects that focus on acceptance, safety, opportunity and true inclusion for the neurodiverse community. Cecilia has participated in workshops to help support families of Autistic people. She has also taken many autism training courses and continues to learn strategies on how to better support her children. She is creative and has been known to create original learning materials to help her own children with their learning at school and home. In partnership with AIDE Canada, AutismBC developed a series of Peer Advice Videos featuring parents from the autism community. Parents in this video series answer questions asked by parents across Canada. You will find a variety of answers thanks to their different cultural, geographic, and neurodiverse life experiences.
Ask a Parent: If and how can I explain my child's diagnosis to friends and relatives?
Melissa answers: If and how can I explain my child's diagnosis to friends and relatives? If you're new to the autism world as a parent or caregiver, we have put together some resources for you on our website. 1. Autism Q and A—Waiting for Assessment: https://www.autismbc.ca/blog/waiting-... 2. A New Autism Diagnosis, what do I do next?: https://www.autismbc.ca/blog/autism-d... In partnership with AIDE Canada, AutismBC developed a series of Peer Advice Videos featuring parents from the autism community. Parents in this video series answer questions asked by parents across Canada. You will find a variety of answers thanks to their different cultural, geographic, and neurodiverse life experiences.
Ask a Parent: When and how do I tell my child they are Autistic?
Shayna answers: When and how do I tell my child they are Autistic? If you're new to the autism world as a parent or caregiver, we have put together some resources for you on our website. 1. Autism Q and A—Waiting for Assessment: https://www.autismbc.ca/blog/waiting-... 2. A New Autism Diagnosis, what do I do next?: https://www.autismbc.ca/blog/autism-d... About the parent: Shayna Kershaw was born and raised in Richmond, BC, but now calls Kelowna home. She is a stay-at-home mom to her three autistic children and a writer. She has been a writer as long as she can remember and uses her words to reach people. She also completed a bachelor’s degree at SFU in English and psychology. Since her son was diagnosed in March 2020, after being misdiagnosed several years prior and subsequently, her two daughters and herself, she has found educating people on what autism truly is to be very important. She has helped many people see autism in a new light and hopes to reach more. Though she is relatively new to the Autistic world, she wants to leave her mark on it, for the better. When not writing or running around with her children, Shayna loves to bake for her family, read fantasy novels, and watch hockey games (go Canucks!). In partnership with AIDE Canada, AutismBC developed a series of Peer Advice Videos featuring parents from the autism community. Parents in this video series answer questions asked by parents across Canada. You will find a variety of answers thanks to their different cultural, geographic, and neurodiverse life experiences.
Ask a Parent: How do I set priorities when choosing therapy or interventions for my child?
Lindsay answers: How do I set priorities when choosing therapy or interventions for my child? If you're new to the autism world as a parent or caregiver, we have put together some resources for you on our website. 1. Autism Q and A—Waiting for Assessment: https://www.autismbc.ca/blog/waiting-... 2. A New Autism Diagnosis, what do I do next?: https://www.autismbc.ca/blog/autism-d... About the parent: Lindsay is a proud mama of 3 children, two of them with autism and other diverse abilities. She is an Early Childhood Educator and Behavioural Interventionist. Lindsay enjoys focusing her lived and learned experiences on helping children with diverse needs be and feel their best. Lindsay advocates within her community and school district to help increase awareness and meet the diverse needs of every learner. Lindsay also volunteers as a resource parent with the Family Support Institute, providing peer-to-peer support for families with diverse children. Through life experience, Lindsay has seen the gaps in various societal systems, and has become passionate about bringing equity to those who need it most, including the beautifully diverse population of the autism community.
How do I support & advocate for my child in the medical model?
Symbia answers: How do I support and advocate for my child in the medical model while maintaining our culture and values? One of the many hats we wear as parents and caregivers of a child on the spectrum is the Advocacy Hat. We are our child's first advocate when they cannot speak for themselves. Within the dominant framework of Medical Model of Disability, how do we support & advocate for our child in the medical model while maintaining our culture and values? In this video, we have invited three groups of parents to share their perspectives on how to stay true to yourself while speaking for your child and families.
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