Article: Steps to getting a formal autism diagnosis as an adult in Canada
Getting a formal diagnosis of autism is a complex process at any age. If you are an adult, it is even harder to access professionals who can give you a formal diagnosis. Below, we have summarized the steps you can take and ways you can prepare for meeting with specialists.
- Find the person/clinic you want to diagnose you and make sure they are accepting new referrals. Some specialists do not require a referral from a family physician, so make sure you ask if you need one to use their services. You can try asking other autistic adults in the area if they know where to go to get a diagnosis. You may also find some help by using the ‘locate’ map on the AIDE Canada website (add link here). Just select “Diagnosis” under our “Journey Stage” dropdown menu for your province. Some clinics may only diagnose children, but you can ask them to recommend specialists who will diagnose adults.
- Make an appointment with a primary care physician. If you do not have one, you may have to go to a walk-in clinic. When you are asked what the appointment is for, you can tell them that you want a referral to a specialist for a ‘formal autism assessment’.
- Make a list of the things you struggle with: Before your appointment with the primary care physician, make a list of the issues you are currently struggling with and the issues that you struggled with growing up. Be sure to include specific examples of things like:
- Sensory sensitivities
- Difficulty with social interactions or making friends
- If you had any language delays growing up
- Whether you struggle when things change suddenly
- If your preferred interests take up so much of your time that they prevent you from focusing on other important things
- Make a list of what you hope to do with a formal diagnosis: You will also want to write down what supports and accommodations you are hoping to access once you are formally diagnosed. Are you looking for access to government programs or services? Do you want an official diagnosis so you can get more accommodations at work or extra time for exams in school? If so, what kind of accommodations will help you the most?
- Ask and answer questions: Make sure to share your lists with your doctor. They will likely have some questions for you. You can also ask them questions. Be sure to ask how long it will be before they send the referral for diagnosis to the specialist. Also ask if they have an estimate for how long it will be before you get a call for an appointment. The doctor may not know, but it is worth asking in case your doctor has referred patients to that specialist before.
- If you don’t succeed, try again: Some doctors do not know enough about autism to recognize it in adults. They may have outdated information or believe in stereotypes. If the doctor is not willing to give you a referral to a specialist, you may have to try with a different doctor. Ask other autistic people in your area who they see for their primary care and if their doctor understands autism and is supportive of their needs.
- Make sure your referral was received: Once your doctor tells you how long it will take to send the referral, wait two weeks and then call the specialist’s office to make sure they received the referral. Some of these doctors and clinics receive many referrals every day, so you will have to be patient as they may not have had time to put your information in their system yet. You can ask how long they expect it to be before you receive a call with an appointment.
- Be persistent but polite: Once they tell you when you can expect that call, mark that date on your calendar. If they have not called you two weeks after that date, then call them again and ask for a new estimate on when they expect to call you with an appointment. Mark the new estimate on your calendar and wait two weeks past that date before contacting them again. Remember, the person who answers the phone may not have any control over how long it is taking for you to get an appointment. There are many reasons that they may be behind schedule. By being polite and giving them two weeks after each estimate before contacting them again, they are more likely to help you out as soon as they have an opening.
- Setting your appointment time: The specialist’s office will eventually call you with an appointment date and time. Usually you do not have many options, so it is best to agree to the whatever day and time they offer. Otherwise, you may have to wait many months for the next available appointment. You can tell them if you want to be placed on the cancellation list so you can be called if an appointment opens up last minute.
- Preparing for your appointment: The specialist will give you a list of things they will need for the appointment. They may ask you for things like medical records, education records, or contact information for people they need to speak with. You can tell them if you don’t have access to everything they are asking for and see if they want some other information instead.
During the assessment, you will likely be asked to take some tests and fill out some questionnaires as part of the diagnosis process. Feel free to ask questions if you want. The letter of formal diagnosis will usually take at least two weeks after you have finished your meetings with the specialist. They may be able to recommend you to different groups for support services. Be sure to ask them for guidance if you are struggling to access the supports you need!
If you would like to learn more about being diagnosed as an adult, please click here to access our toolkit: “Receiving an autism diagnosis later in life: a self-advocate perspective ”, you can also click here to access our article “Being diagnosed with autism as an adult: What should I do while wait for a formal diagnosis?"