The benefits of a formal autism/AuDHD diagnosis

A frequent question in autism and neurodivergent groups and communities is what the value of a formal autism/AuDHD diagnosis is. I’ve often answered this question in comment sections, outlining a few key ways (usually about 4) my diagnosis has helped me. But upon further reflection, I realized it has positively impacted me in more ways than I initially recognized.

In this article, I aim to explore that question more fully—examining how an autism or AuDHD diagnosis (and, more broadly, any formal diagnosis) can be meaningful and beneficial.

Of course, the value of a diagnosis is deeply personal, and not every point will resonate with everyone. Still, these are the main reasons why seeking an autism assessment proved worthwhile for me.

Confirmation

My diagnosis confirmed what I basically already knew, but it still gave me a huge sense of relief to get it formally confirmed. I had only a vague understanding of autism in my teens and what I knew didn’t resonate with me, but when I read up on what was at the time called Asperger’s syndrome when I was 19, I was amazed how accurately it described me. That was a really significant experience to me, because up until that point I felt alone and that there was something off about me. Autism helped me make so much sense of my behaviors, my lack of social instincts which I compensated for by emulating others and masking, and it helped me make sense of how I interacted with the world. A formal diagnosis confirmed everything I was able to make sense of after learning about autism.

Relief

As a result of that clinical confirmation, I experienced a huge sense of relief. Yes, I was absolutely confident I was autistic, as nothing else was able to make so much sense of who I am and how I behaved. But I couldn’t help but shake that minor doubt: What if somehow I still got it wrong? By the time I pursued a formal diagnosis at 25, I had already invested 6 years into autism as a framework of understanding myself, so the stakes felt really high.

Supposing I had been diagnosed with something else, I imagine my world would have been shattered; but assuming that other diagnosis was correct, I would think it would have made even more sense and helped me understand even more about myself than an autism diagnosis would have. So I think in the end it would have brought relief regardless. When I ultimately found out I also have ADHD, AuDHD as a framework indeed helped me understand a lot more about myself than the autism diagnosis alone did.

Validation & reframing

Another significant consequence of my diagnosis was that it validated my experience; it made me feel different but valid, as opposed to broken and wrong. Actually, just finding out I’m autistic already did that for me, as it helped me shift my self-perception from weird and deficient to beautifully or whimsically eccentric. No, there wasn’t anything wrong with my brain; it’s just a different neurotype. My neurons are not dysfunctional; they’re functional in a way that just differs from the norm.

I recognize I’m just reframing the facts of the matter, but I’m not just kidding myself. I think it’s important to shift your self-perception from dysfunction and pathology to difference and neurodivergence. Discovering I’m autistic and ultimately getting my diagnosis helped me appreciate myself more. I like being different and a little eccentric.

Affirmation

For many, a formal diagnosis can also be incredibly important in the sense that it brings them affirmation. We tend to grow up feeling like we’re different from others, and often in ways that makes us feel lonely—possibly even that we’re the only one like this. For that reason, it can be almost transformative experience to discover about autism or any other condition that describes us so comprehensively that it seems to describe us specifically rather than our neurotype more broadly.

And yet, as amazing as that is, when we tell others about our newfound understanding, we’re often disbelieved. As I discovered years later, we tend to gravitate towards other neurodivergent people. So when we tell friends who may be autistic themselves, or family members who are statistically likely to share autistic traits based on our genetic commonalities, we’re often told, “You can’t be autistic; you strike me as very normal”, not realizing that their perspective of what is normal/normative is based on their own autistic way of being and relating.

But regardless of whether the people we tell are autistic or not, it’s common to be told that we can’t be autistic. For that reason, a formal diagnosis can be highly significant in that it lends more credibility to the fact that indeed you are autistic, and medical professionals have now confirmed it. But it can also be earth-shatteringly important for us to finally be BELIEVED, to be SEEN, and to be UNDERSTOOD. First by the clinician who diagnosed you; and hopefully as a result, others will be more inclined to believe it.

Credibility

Which brings me to a related point. Sometimes it’s actually medical professionals who disbelieve that we’re autistic. And it’s often the same story

• Your therapist might not believe you’re autistic because they are quite ignorant about the condition and have very outdated views on it. You can’t be autistic because you make eye contact, because you can hold a job, because you’re married with children, because you’re too intelligent and self-aware, or because you have good hygiene and aren’t living in the gutter (seriously, this is actually what an autistic person was told by their therapist).
• Or your therapist might not believe you because they’re autistic themselves and don’t know it, so they can’t recognize it readily in others unless their autism presents itself in classical and undeniable ways that go beyond their own presentation of autism. By the way, to learn about autistic people who reject autism in others because they’re biased by their own unacknowledged autism, read our article about what we call the pseudotypical.

Getting a formal diagnosis can lend credibility to your self-diagnosis. Although we believe self-diagnosis is valid, and it usually precedes getting a formal diagnosis, which clinically confirms how valid your self-diagnosis was, unfortunately, sometimes you do need a formal document that makes it hard or impossible for other medical professionals to reject your autism.

Insights & understanding

For many autistic people, a formal diagnosis can bring more insights and an even deeper understanding of our autism and ourselves more broadly. It’s common for autistic people to research autism extensively before finally pursuing a diagnosis, so we tend to know a lot about it. But most likely you will learn things you didn’t know yet. Honestly, there is so much to know about autism, and so much that is still being discovered, I’m still learning new things about myself 17 years later.

Some of the new insights you might gain simply by filling in the psychometrics, and finding things you resonate with; or perhaps finding things that actually point to biases and misunderstandings the authors of autism tests have. For one, I think many autism tests are poorly worded in the sense that they don’t sufficiently take into account how we think. The RAADS–R is a pretty good and comprehensive psychometric, but we’re seeing that this test more than any other is often hard for autistic people to understand what the test items are getting at.

And of course the insights can come from the diagnostic interview, the diagnostic report, or potentially a post-diagnostic appointment. My diagnostic report was only 1.5 pages long. But it did allude to alexithymia (though didn’t mention it by name), which I learned more about a few years later, and which was another very significant part of the puzzle for understanding myself. I got my diagnosis over 10 years ago, so definitely these days you can expect a much more comprehensive diagnostic report. Our autism/AuDHD assessment process at Embrace Autism yields a diagnostic report of about 60 pages! That’s probably unusual, as our process is more elaborate than at other clinics. But either way, you should come away from the assessment learning at least a few new things about yourself.

Community & identity

Besides offering yourself insights and understanding, a formal diagnosis can also help your family and friends understand you better, adjust expectations, and offer you more tailored guidance and support. It can help you connect better with others based on your own improved understanding and how others understand you, your needs, your strengths, and what motivates you.

Plus, a formal diagnosis can help you connect with autistic peers and advocacy groups. I mean, sure, you can do that irrespective of a diagnosis, and it can be immensely valuable to do so to better understand yourself, and simply to find kinship and maybe even friendship. But personally, I was quite hesitant to be very open about my autism until I had it formally confirmed. I did tell family and friends as soon as I found out that autism describes me so accurately, but it wasn’t until after my diagnosis that I found the confidence and comfort to start writing about my experiences and autism more broadly. At first, I started writing on Quora to have a voice and to process my autism and the challenges I faced. Along the way, however, I started integrating more research, I adopted a more constructive and holistic view of myself and autism where I fully acknowledged our/my strengths, and I became an autism advocate, started collaborating with Natalie, and ultimately in 2018 we founded Embrace Autism so we could inform, empower, and inspire other autistic people.

Taking control

The better you understand yourself and how you relate to the world and other people, the more control you can exert in principle. A formal diagnosis can both confirm the validity of your self-understanding, and expand your self-awareness. As you become more aware of your needs, wants, and boundaries, you can take more control of your emotions, your relationships, and know what you need in terms of accommodations, therapy, and so forth. Awareness is the starting point for further change.

As a general principle, awareness motivating change is perhaps best embodied in Control Theory, where awareness of the gap between current and desired states motivates resolving that difference (in behavior, mathematics, engineering, etc);^[1]Control theory: A useful conceptual framework for personality–social, clinical, and health psychology (Carver & Scheier, 1982) or more specifically Perceptual Control Theory (PCT), where awareness is part of behavior as a continuous process of comparing current perceptions to internal goals and making adjustments to minimize the difference. Simply put, by knowing better what you need, want, or desire, you will have a greater capacity to pursue those things, whether it’s establishing boundaries, resolving trauma, asking for accommodations, knowing what you need to grow and learn, etc.

Planning & self-advocacy

Speaking of awareness and boundaries, a formal diagnosis can help you clarify your needs, strengths, and stress points for long-term personal planning and growth, as well as for career planning. It could give you a better idea of which jobs suit you and which are sustainable in the long term. For instance, many autistic people pursue jobs to help others, like becoming a psychologist, a nurse, or a doctor, which can be very fulfilling in the short term and perhaps even for years; but at some point, caregiver burnout could kick in. A formal diagnosis could give you a better understanding of the risks of burnout—whether caregiver burnout or autistic burnout—and clarify better career options.

For instance, I pursued an MA in research psychology rather than clinical psychology, because while I love to help people, I rather help indirectly by making contributions to research and education than having to work with clients all day, which strikes me as a very draining experience. Fulfilling, yes, but socially draining and not something that seems viable long-term. I would much rather work behind the scenes in my own little office. It’s very useful to be aware of your needs, wants, constraints, and what really motivates and energizes you.

Therapy/treatment options

A formal diagnosis can not only help you navigate career options, therapy, and accommodations; but it can also give access to specialized care.

After my diagnosis, I was offered to trial an adapted schema therapy for autistic people. So I was one of the participants who helped validate the efficacy of this therapeutic model for autistic people. But more relevant to me, the therapy helped me in many ways!

Simply put, schema therapy combines various models and techniques (including cognitive behavioral therapy, attachment theory, and Gestalt therapy) to treat long-standing patterns of thought and behavior which often stem from our childhood but which no longer serve us. It helped me recognize I criticize myself using the internalized voice of my father, which drove my strong work ethic; it helped me understand that while I see my perfectionism as a handy and desirable trait which motivates me to strive for excellence and maintain high standards in my contributions, it has a dark side to it in the sense that I will always treat my accomplishments as “not enough”, and that I don’t see myself as having inherent value but see myself as valuable only insofar as I contribute something of value. I learned to recognize that although I’ve claimed perfectionism as part of my identity and primary drive, it leads to a lot of unhappiness and dissatisfaction. The therapy also helped me increase my empathy by role-playing my parents and others, and see things from their perspective, and better appreciate them. And it has helped me reduce my negative thinking patterns and adopt a more positive and constructive thinking style.

Anyway, suffice to say, this therapy has helped me in many ways; and since it was a therapy catering to autistic people specifically, I probably wouldn’t have been able to pursue it if I had no formal diagnosis.

Participation in research

I imagine this isn’t going to be a crucial factor for most people nor one of the motivations for pursuing a formal diagnosis, but I think I should still mention the potential benefit of research participation. If you have a formal diagnosis, you could become a viable candidate to participate in research studies that rely on their sample being clinically validated. You may even be recruited via the clinic that diagnosed you.

Or as in my case, you could be referred to a pioneering therapy to establish that the therapy works. Of course the potential downside of being the first to test a new therapy is that it might not work. But if it does work, it can feel like a privilege to be among the first to get a therapy that perfectly suits your needs.

Tailored treatment & care

It might also benefit you to share your diagnosis with health professionals, such as your therapist or doctor. It can help them provide you with better treatment. For instance:

• It can help your therapist give you better-informed and customized care; by knowing that you’re autistic, AuDHD, or whatever other diagnosis, they can select treatment plans that have proven efficacy for those conditions, and they can skip treatments that have been proven not to work very well for us. Or it can help them adapt existing therapies to better address the needs and challenges of autistic people.^[2]Adapting Psychological Therapies for Autism – Therapist Experience, Skills and Confidence (Cooper, Loades, & Russell, 2018)
  • Note that although informing your therapist about your autism can be helpful, it will only help insofar as your therapist has knowledge of autism and treatments and strategies that work; and it may even work against you if your therapist has outdated views on autism. It’s always in your best interest to specifically look for an autism/neurodivergent-affirming therapist.
• Your diagnosis may help your doctor or psychiatrist find appropriate medical treatments for you. For instance, some SSRIs are less likely to work for autistic people, with one study showing that Sertraline (Zoloft) didn’t work on autistic people with low support needs (as opposed to those previously classified as classical autism disorder and PDD-NOS.^[3]Sertraline in adults with pervasive developmental disorders: a prospective open-label investigation (McDougle et al., 1998) So if you’re being treated for depression, it’s valuable for your doctor to know which medications are contraindicated. Same thing with ADHD, or any other condition.
  • Note that this does assume your doctor knows about autism/ADHD with respect to medications anyway, or that they will review the research literature to find relevant information to your situation—which is sadly not always the case.

Simply put, a formal diagnosis can reduce inappropriate medication or therapy, and it can even reduce or prevent other misdiagnoses.

Disclosing your diagnosis to medical professionals not only helps them provide more informed treatment, but also enables them to offer clearer guidance, adapt their approach to your needs, and better understand the context behind your behaviors. For instance, they will have a better understanding and appreciation of why you engage in stimming, why you offer short answers to their questions without elaborating, why you have difficulty understanding metaphors and figurative speech (literalism), why you can’t offer nuanced answers when it comes to questions about your emotions and feelings (alexithymia), why the introduction doesn’t follow social conventions, why you seem hyper-focused on everything around you, why you may ask for the office lights to be dimmed, etc. It can also let your doctor know that you may underreport your pain.

It will probably benefit you to disclose your conditions, whether or not you have a formal diagnosis, but, as discussed in the section on credibility, a formal diagnosis can help medical professionals take you seriously. They should in either case, but sadly not all of them do.

Accommodations

A formal diagnosis can help you access accommodations at work or in school. In university, I was given a bit more leniency with deadlines, which was nice. But perhaps even more helpful to me, I was given routine weekly meetings with my student advisor on a fixed day and time, instead of having to manually schedule them each week on whatever day and time were still available. That made things so much easier for me!

You might be able to get accommodations without a formal diagnosis, though some institutions may require it. I don’t actually recall having to prove that I’m AuDHD. There is something to be said for accommodating students and workers irrespective of whether they have a particular neurotype or condition. People ask for accommodations because it helps them function better after all.

If you’re requesting accommodations at work, please read the article below which describes various accommodations you could ask for, but it also covers the potential risks of disclosing your autism or another condition in the workplace in the first place.

Workplace accommodations for autism & AuDHD

Legal & educational protection

Speaking of the risks of disclosing autism at work, in many countries, official documentation is required for protection under disability or anti-discrimination law. As I briefly discussed in the workplace accommodations article, there is a risk of your employer firing you so they don’t have to concern themselves with accommodations, but that will give you grounds for a legal case against your employer, and a potential payout for discrimination. I doubt this would be a motivation to pursue a formal diagnosis, but it’s one of the potential benefits.

Conclusion

Those are the benefits of a formal diagnosis that I can think of. Simply put and in summary, a formal diagnosis can really empower you in many ways, whether it’s learning to appreciate yourself more, navigating your career, establishing your needs and boundaries that are embodied in healthy relationships, asking for help and knowing what help to ask for, or protecting yourself from exploitation and discrimination. Learning more about autism can bring you most of those things as well, but a formal diagnosis can certainly aid you in your pursuits or just give you peace of mind.

If you’re interested in our own online autism/AuDHD assessment service,
you can read about our assessment process and our international diagnostic
team of psychologists and doctors (who are all autistic themselves!) here:

Autism/AuDHD assessments