When I was getting my own various diagnoses on the neurodivergent front it was when I lived in the United States, which meant I had no idea the kind of support my now fellow Canadians would need around assessment/diagnosis options in Ontario. Since a lot of my clinical work is with other ADHD and Autistic folks, I’ve run into the process a few times now and the following is a compilation of what I’ve learned to be true in my (and my patients) experience with it.
Table of Contents
- Should I get an assessment?
- What is the assessment like?
- So what’s all this about Self-Diagnosis?
- When I’d potentially encourage/discourage an assessment
- The history and current state of assessment tools and their accuracy
- Why the f*ck are these assessments so expensive?
- Where can someone go to get these assessments?
- What to do if someone gets results back that they don’t like/agree with?
- Works Cited and other resources
1. Should I get an assessment?
When someone tells me they want to get an assessment for ADHD or Autism I always ask them what the goal of the diagnosis would be. What would a diagnosis allow you to have/access? What is the value in a diagnosis for you personally?
Depending on the reason, they may not wish to pay the costly fee or withstand the seemingly endless waiting lists.
You may not need a formal diagnosis if the goal of finding out whether or not you have ADHD/Autism is more about personal understanding and permission than external resources. If someone tells me they just want to know it out of curiosity or interest, then self-diagnosis (see #2 on this list) might be a better fit- unless that person also can/wants to spend the considerable money for private assessments or doesn’t mind waiting for a spot in a public healthcare facility.
Many see official diagnosis as ‘permission’ to finally use the label, or to be part of the community, or to utilize tools and techniques for neurodivergent people. There are certainly many reasons a person could want to have a formal assessment completed, but the significant cost or wait time can be a very real barrier for many and a self-diagnosis would still allow them the same things as an official one.
However, if you want the assessment done because you need a formal diagnosis for school/work accommodations, to apply for ODSP/disability, to acquire medication, to qualify for assistance from neurodivergent supportive programs and organizations, to apply for the DTC, or anything else that demands an official diagnosis, then you pretty much have no choice but to pursue one of the usual channels- mainly either a medical assessment or a psychological assessment.
2. What is the assessment like?
A medical assessment can be done by a physician/paediatrician, psychiatrist, or nurse practitioner who has training and feels comfortable making the diagnosis. If a physician does it then it’s usually covered by OHIP the way any family doctor visit gets covered. If it’s a nurse practitioner, and there’s no higher doctor to sign off on their decision, then OHIP may or may not cover the cost.
Psychologists and Psychiatrists that are covered by OHIP (those in public healthcare facilities for the most part) can also provide these assessments. If the provider is in a private practice /fee for service type then you will almost definitely have to pay out of pocket. The costs of those assessments can be in the thousands, for ADHD and/or Autism both.
The assessment process, simplified, generally looks like this:
A clinician of some kind does direct observation, assessments to target specific areas, clinical history, and provides assessments to either be filled out by the patient or patient’s guardians (depending on age and access). After the results of both the interview and the assessments are collected, the clinician will come to a decision about whether or not they believe the patient in question has ASD or ADHD.
Clinicians during the interview will ask for things like early developmental history, past and present experiences at home/school/work, any other medical diagnoses, any other neurodevelopmental diagnoses they’ve already received, behaviors when alone and socially, communication style and skills, areas of strength, things they struggle with, etc.
When doing the assessments themselves, you can usually expect a battery of multiple tests that target different areas. Popular assessment names include: ADI-R, ASRS, RAADS-R, AQ-10, EQ, ADOS, CARS, GARS, CAT-Q, SQ, and others. Clinicians will look at the results of each and compile a general result based on them and the interview.
Sometimes the assessment results will suggest something entirely different than the direct observation done during the interview. Between the clinician interview and the diagnostic assessment, the clinician’s diagnosis generally takes precedent. Often because symptoms seen during an interview are potentially more accurate than a self-report, especially with children who would understandably not be clear on the language for everything.
Most assessments will ask personal questions like the true or false “I learn how people use their bodies and faces to interact by watching television or films, or by reading fiction” or “When I was young I did not enjoy collecting sets of things e.g. stickers, football cards.”
It’s worth noting that many questions aren’t always very clearly worded, or have negatives thrown in that can make it difficult to read. So don’t rush the assessment process, and if you truly can’t make head or tails on a question you’re advised to give it your ‘best guess’ which I personally found very frustrating when taking them.
3. So what’s all this about Self-Diagnosis?
There’s an awful lot of debate in the clinician community and the Neurodivergent community about the validity of self-diagnosis for ADHD and/or Autism. I don’t believe anyone can provide an accurate catch-all final answer on this front, and I’m certainly not going to try.
Personally, I don’t think self-diagnosis on its own hurts anyone. Usually the people who tell me they self-diagnosed their Autism or ADHD did so after participating in significant research and consideration. It’s much more rare, though it does happen, that I hear about self-diagnosis from someone who declared themselves neurodivergent after they saw a random video on tiktok about “autistic traits” (which is almost a pointless title for anything, because basically no ‘autistic trait’ on its own is proof of neurodivergence. You can have many of those same exact traits from trauma, life experiences, things taught to you about socializing/expressing yourself in formative years, and a hundred other non-autism or adhd related sources. One reason we throw so many assessments at these diagnoses is partly because the ways they show up can range widely).
Trying to diagnose yourself solely by reading through the criteria in the Diagnostic Statistical Manual (DSM) or International Classification of Diseases (ICD) is often an exercise in frustration. Both are written in deficit-based language and are pathologizing by nature, so it’s not a particularly enjoyable read for anyone whether or not they understand the overly clinical language that makes it very difficult to read effectively without training or experience. You’d be much better off self-diagnosing based on extensive first-person accounts, clinicians who are neurodiverse that explain it in more depth with videos or articles of accessible language, and other sources where the research is well cited and not based solely on a very limited demographic. The DSM and ICD are both more oriented towards serving systems than people, so keep that in mind.
There is also the matter of how the descriptions and understanding of Autism and ADHD have changed over the years, with only some growth on the limited research range that is still lacking an awful lot of diversity (though thankfully this is still very much in progress, and a lot of neurodivergent researchers especially are helping with this).
TL;DR: If someone wants to call themselves Neurodivergent based on an educated or uneducated decision that they have Autism or ADHD, it’s simply not my business to tell them yes or no. If someone has very good reason to believe it, but not the privileged resources to access a formal assessment, then I think it’s foolish to disregard their experience entirely just because it doesn’t have a doctor’s signature beside it.
4. When I’d potentially encourage/discourage an assessment
If someone feels they might be neurodivergent and wants an assessment (and can afford and/or access an assessment) then it’s a no-brainer to support them in getting one.
Showing routine signs of Social (starting and maintaining a balanced conversation outside of your interests, difficulty with small talk, flat expressions), Communication (modulating tone, verbal and nonverbal understanding, metaphors or literal language), Physical/Sensory (repeated motor or verbal tics, insistence on routine or reliable schedule and behavior, awareness and extreme discomfort with certain types of stimuli), Interests (fixed and specific areas of interest where great knowledge has been collected and can be recited), Lifelong (traits mentioned would be neurodevelopmental and not acquired later in life), Struggling (there must be some degree of suffering, a requirement for everything in the DSM) and other common diagnostic markers is the reason most people will be encouraged to pursue testing. That said, all of the things mentioned are also possible for someone to have without ADHD or Autism. There is no simple one-size-fits-all test criteria that also cannot be explained/caused by any other diagnosis.
Considering the high comorbidity of Autism with other diagnoses, you will sometimes see people consider Autism assessments because of other diagnoses they’ve already received (Anxiety, PANS, ADHD, Dental Issues, Depression, Epilepsy, Gastrointestinal Disorders, Immune function disorders, Metabolic disorders, Sleep disorders, etc to name a few are common conditions to have alongside). If there’s reason to suspect Autism or ADHD is a factor, even without the presence of the aforementioned diagnosis, that’s obviously a fine reason too.
When to potentially not get an assessment:
There are a few scenarios where an Autism or ADHD assessment isn’t actually in a person’s best interest. I speak almost exclusively of those who are pursuing a diagnosis from a place of fear or anxiety about what will happen if they do/don’t or those who believe an assessment will be the miracle cure that fixes every aspect of their life.
If there’s an anxiety disorder (especially Illness Anxiety Disorder), or OCD present, AND the request for an assessment sounds more like, “I’m scared of this being true and I want reassurance that it is not,” or “Once I get this test done I can just have everything solved and life will immediately get better,” then there needs to be a pause and check in before assessments. Those kinds of talking points tend to speak to it being less about the likelihood of actually being neurodivergent and more about the fear adjacent to it.
Now the irony here is that since a significantly high number of Autistic folks (84%!) also have an anxiety disorder. So, I don’t want to give the impression that an anxiety disorder means someone should never get an assessment for something that has a wildly high rate of comorbidity with anxiety disorders. What I mean is that we should be careful when asked for assessments by folks with anxiety disorders where the type of anxious cycle they get stuck in is focused on either finding out “if I have [insert any diagnosis] problem” or finding out “if I have [insert any diagnosis] that can finally be the solution to everything for me.”
Anyone who works with anxiety disorders or OCD can tell you that these are popular types of worry, as someone with OCD and an anxiety disorder I definitely dabbled in the same worry cycles myself for ages, so it’s good to be clear about whether or not the person actually still believes there’s a likelihood of neurodivergence when fear or anxiety isn’t present.
Obviously a provider can’t and shouldn’t say “no, you aren’t allowed to pursue this ever” but when someone who routinely gets very activated at the idea of a potential ‘problem’ they worry about having (I personally don’t see neurodivergence as a problem, but a lot of people with anxiety ABOUT being neurodivergent do) then I’d want to make sure the person isn’t just doing Reassurance-Seeking with Extra Steps™️ and fixating on neurodivergence as the rotating content of this worry type.
5. The history and current state of assessment tools and their accuracy
Neurodivergent folks ourselves are not a recent phenomenon, though the language we have now absolutely is. It wasn’t until the 1960s that we even had a working definition for Autism that was accepted in multiple places. ADHD, as a clinical term, is even more recent in 2000. Since then we’ve had a whirlwind of various versions of both Autism and ADHD across the DSM and ICD both. We’ve revised them in every edition, sometimes heavily. The Spectrum aspect of Autism was added to highlight the very diverse range of shapes it can take in those who have it.
Historical accounts of individuals that align with modern understandings of Autism and ADHD are surprisingly abundant. We’ve had medical professionals describing disorders that sound like ADHD since the 18th century, and Autism since the 20th century. If you want to do a deep read of the historical material, be prepared for lots of charming (/s) terms like “autistic psychopathy,” “moral defects,” or “idiocy,” for formal diagnostic titles. This phenomenon is hardly localized to neurodivergent folks, the entire medical history is rife with ridiculous or downright insulting terminology.
We’ve also revised the definitions so much because the research itself was incredibly unequal when it came to research representation and access. The hegemony inherent in any diagnostics is amplified when you consider the barriers and lack of research when taking into account race, ethnicity, culture, gender, wealth, and socioeconomic class.
As for the current assessments we’re using, we’ve got loads of screeners of varying types though it’s important to be clear that there is no one single and definitive test that is used to assess Autism or ADHD.
6. Why the f*ck are these assessments so expensive?
I feel like the short answer is ‘because capitalism and the medical industry go together like peanutbutter and chocolate but in a bizzaro world where good tasting things were evil.’
The longer answer comes down to a few things: specialist-training required to do it means specialist prices, insurance companies have to basically be forced to cover anything, the access to each assessment itself is ridiculously pricey on it’s own (not even taking into account the cost of the clinician performing the interview and going over each test), and the suggested tests are revised and added to so the rising cost continues for the providers too which then ends up being suffered by the customers.
7. Where can I go to get these assessments?
Children have a lot more access to programs and resources for both the diagnosis and the treatment/supports available to help those who are assessed.
Ontario has a few diagnostic hubs around the province that parents can access for children/youth who wish to be assessed, though wide ranging wait times are to be expected.
The Ontario Autism Program (OAP) helps children, youth, and adults with resources that include assessments. They are not a direct service provider but can connect you with resources for before and after a diagnosis.
If you’re an adult the diagnostic options are usually the result of self-advocacy. You bring this up to your family doctor, psychiatrist, psychologist, or therapist and either have one who is comfortable with and capable of doing the assessment- or you get a referral to a specialist.
You can also self-refer directly to some assessment providers, my particular favorite in Ontario being run by neurodivergent folks for neurodivergent folks is Neuroinclusive Canada. They’re a non-profit and charge only for the assessments and the time/organization fees which makes them far less expensive than many other private assessment providers.
I have seen some people have success with getting a therapist to write up a report on why they think someone matches the diagnostic criteria for ADHD or Autism, and if the family doctor reads and agrees with the assessment the therapist wrote then it can become an official diagnosis through that doctor. I’d suggest anyone ask their doctor, AHEAD of getting a therapist’s informal assessment, to see if they would be willing to sign off on it if they agreed with the therapist’s write up. Not a foolproof option, any doctor can say no and depending on the therapist they may or may not have any idea how to write that letter for maximum effect. Still, it’s worth noting.
8. What to do if someone gets results back that they don’t like/agree with?
Getting any diagnostic result tends to be emotional to some degree, whether it’s relief from now having a name and an explanation and a sense of community, or fear of stigma and rejection and the potential loss attached.
I remember laughing quite rudely at my very no-nonsense psychiatrist when she asked me “how old were you when they first diagnosed you?” and I gleefully told her they hadn’t because I definitely didn’t have anything like that. I had awful anxiety and OCD for sure, but I couldn’t possibly be neurodivergent.
My internalized ableism had loudly come to the conclusion that “if I really did have that then I wouldn’t be able to do [insert anything I achieved], and sure I struggle with things sometimes but I’m pretty lazy and I have a poor work ethic, which is hardly diagnostic of anything. Wouldn’t they have caught it when I was younger if I was?”
She printed out a few assessments in silence and watched me sputter my way through answering them, reminding me not unkindly of things like “it’s a true or false question, no clarifications” and “is that still true on your worst days?”
Needless to say, I can acknowledge that she was not only correct, but that I’m a pretty damn classic case in a lot of ways. I assumed a lot of stereotypical and negative things, and after denying it for a while I eventually recognized I was mostly trying to protect myself from the belief that if I had any of these things I wouldn’t be able to do the things I wanted. My conception of anything Neurodivergent was entirely negative when applied to myself, even if I hadn’t considered it a ‘problem’ when friends of mine told me about their diagnoses, it felt innately problematic if it was true for me.
I’ve come an awful long way since then, and mostly it was other Neurodivergent folks who really helped show me how awesome and interesting it is to live with a brain wired a bit differently from others. The Neurodiversity Paradigm (the theory that rather than Autism or ADHD being seen as abnormal/defects they should be seen as someone whose experience and perception is merely different instead of worse/wrong) is a great example of how I view it now. There are things I can easily do that neurotypical people would struggle immensely with, just like there are things I struggle immensely with that neurotypical people can easily do.
Works Cited and Other Resources
https://www.ontario.ca/page/ontario-autism-program
https://neurodivergentinsights.com
Fletcher-Watson, S. (2024). What’s in a name? The costs and benefits of a formal autism diagnosis. Autism, 28(2), 257-262. https://doi.org/10.1177/13623613231213300
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Liu A, Lu Y, Gong C, Sun J, Wang B, Jiang Z. Bibliometric Analysis of Research Themes and Trends of the Co-Occurrence of Autism and ADHD. Neuropsychiatr Dis Treat. 2023 Apr 24;19:985-1002. doi: 10.2147/NDT.S404801. PMID: 37138730; PMCID: PMC10149780.
Alliance CAR, 2011. Canadian ADHD Practice Guidelines, 3rd ed., 3rd ed.
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