Post-diagnosis experience of 5 autistics (Part 1)

A formal diagnosis affects autistics differently. For some, like myself, a diagnosis was relieving and put an end to a lifelong feeling of being broken; I didn’t experience the grief that other people did. For others, such as Shreddy, a diagnosis was at first frightening in that he felt it meant that he was the reason for the failure of his relationships. But his perspective changed over time, and he chose more appropriate relationships and stopped blaming himself for everything.

Some people, like myself, sought a diagnosis very soon after realizing they might be autistic; while others, like Eva, had known they were autistic for quite a while before seeking an assessment.

Here myself and 4 other autistics answer questions I often get asked about the period after an autism diagnosis; what can you expect to experience once you get diagnosed?

Five autistic people

Below are short descriptions of the 5 people whose answers we will cover in this article:

Post-diagnostic experiences

Since being diagnosed, how has your internal world changed?

Dr. Natalie Engelbrecht ND RP

The framework of autism transformed my understanding of myself. The experience helped me accept that I would never be able to please everyone all the time. It also meant that I had a group of people with whom I belonged. As a result, I have been able to make real connections. I no longer feel alone.

Knowing I was autistic allowed me to understand that I have a brain that is designed to ceaselessly search for what is wrong in everything all day and night, including myself. It also allowed me to understand that the gating mechanism in my brain that gates negative thoughts, does not gate. I used evidence based neuropalsticity techniques to prevent this This allowed me to choose to stop searching for what was wrong with myself and as a result I created peace inside myself by changing my thoughts.

I was able to effectively address my anxiety, depression, and suicidality using tools that are effective for autistic. I gained self-confidence and felt better about myself as a result. Through it, I have connected with others and have better relationships where I feel accepted, loved, and liked.

Eva Silvertant

While I have been pretty certain that I’m autistic since I was 19, without a formal diagnosis, I still had some anxiety about being wrong about that.

My autism diagnosis at 25 confirmed that I was right all along; that I had the correct framework in which I could make sense of myself, my emotional, cognitive, and social differences, and how I relate to the world and other people. That gave me a sense of peace. It validated my experienced, and made me feel who I am is a logical consequence of my neurotype, rather than being fundamentally flawed in some ways. It helped me shift from feeling there was something wrong about me, to truly accepting myself, and even taking pride in who I am—pride in being able to make things work and find my niche in a world that isn’t particularly accommodating to or understanding of my particular neurotype, and for being able to show up as my authentic self regardless of judgments people may have.

So ultimately, my diagnosis—and even just the understanding that I’m autistic—gave me strength, acceptance, and self-compassion.

Hailey Revolone

I don’t know that my internal world has changed due to being diagnosed, but I would say that the way I perceive my internal world has shifted. I now have a better understanding of my thought patterns, proclivities, and perspectives. My diagnosis has allowed me to recognize and appreciate some of my strengths, such as my meticulous attention to detail and ability to systemize.

In many ways, my diagnosis has also given me the confidence I needed to express who I am more freely. Like many others, I experienced autistic imposter syndrome. Despite knowing that I had many autistic traits, I didn’t feel confident stating that I was autistic without formalized paperwork saying so. Each time I mentioned being autistic, I felt I had to include the caveat, “but I haven’t been formally diagnosed…” which led to unhelpful doubt from others that confused and minimized my experiences. My diagnosis allowed me to better see and accept myself for who I am.

Shreddy Dee

I berate myself less for the things I’ve always had trouble with but couldn’t improve, such as driving, getting lost, making phone calls and appointments, being on time, remembering to pay bills, interrupting people, etc. Those things are still bothersome, but I don’t get as distressed or upset with myself.

Dr. Debra Bercovici PhD

Since getting diagnosed, I have been able to treat myself with more self-compassion. Before, it was easy to judge myself for “not being normal” and for not understanding my experiences. Now that some time has passed since my diagnosis, I’ve been able to treat myself with more grace when I need support, and I am able to validate my experiences, even when they aren’t typical.

Since being diagnosed, how has your external world changed?

Dr. Natalie Engelbrecht ND RP

It allowed me to create accommodations for myself, such as minimizing my home, painting the walls in pleasing colours, changing my patient contact to virtual, and changing my patient schedule to avoid meltdowns.

It allowed me to improve my relationships. I could connect with other autistics, and it helped facilitate improved communication with the people I kept in my life. It also allowed me to access effective evidence-based therapies for anxiety and depression in autistics.

Eva Silvertant

Since my diagnosis, I became more upfront about being autistic, and I started writing about my experiences of being autistic. I became more invested in learning about autism by reading papers, which gave me even more insights into myself and how I relate to the world. This increased awareness and willingness to explore what autism entails and to write about it ultimately led to co-founding Embrace Autism with Natalie.

I have since also made use of accommodations in university, such as pre-scheduled meetings with my student coach rather than having to make appointments with her manually each week—possibly at different times. So my diagnosis ultimately brought me more ease in school as well as in work environments.

Hailey Revolone

Since obtaining a diagnosis, I have been able to tailor my life to meet my needs better. I have always had similar needs, but before knowing conclusively why they existed, I had a tendency to overlook them, which meant pushing myself to the point of overwhelm and burnout.

I have learned to cultivate an environment that makes me feel happy and safe. For example, since I work remotely, I created an office for myself that makes me feel good to be in. I have also found a community of other autistics, which means I’ve been able to form friendships with people who love and accept me for who I am. I was previously surrounded by well-meaning but misinformed people who didn’t understand my needs and certainly couldn’t relate to them, which could be disheartening, confusing, and frustrating at times. Finding people who both understand my needs and share many of them has changed the way that I approach relationships for the better.

Shreddy Dee

I’m not as influenced by the pressure to say “yes” to every activity. There can be a lot of family get-togethers, closely spaced, and I know there’ll be a less than favourable outcome if I try and attend each one. I pace myself and temper interactions with the external world.

Dr. Debra Bercovici PhD

I am more deliberate about who and what I surround myself with. I put a lot less effort and energy into trying to fit into relationships and spaces that do not accommodate my needs. Instead, I am more deliberate about finding people who process/experience the world similarly to me and about looking for spaces which are accessible.

Has anything negative occurred as a result of being diagnosed?

Dr. Natalie Engelbrecht ND RP

Nothing negative has occurred as a result of being diagnosed. Being autistic was such a relief to me, and something I felt really good about.

Eva Silvertant

I don’t recall anything negative as a direct consequence of being diagnosed. I’ve had some mildly annoying experiences with ex-colleagues making assumptions about me based on my autism, but this is a consequence of disclosing my autism, rather than a consequence of the diagnosis per se. Getting diagnosed I experienced as an exclusively positive experience.

Hailey Revolone

No, nothing negative has occurred as a result of being diagnosed.

Shreddy Dee

On the one hand, it’s a relief to know that so many lifelong difficulties have an explanation and I can stop the unfruitful struggles. Conversely, knowing many will not improve no matter how hard I try is a bit disheartening. I can’t say that’s necessarily negative—knowing where to put your energies is helpful.

Dr. Debra Bercovici PhD

For me personally, nothing negative has occurred. However, I recognize that this is an extremely privileged experience. Getting a formal diagnosis is not for everyone; and for many marginalized folks, it can certainly lead to negative consequences. Alternatively, you may already have lots of supports in place so for you, getting a formal diagnosis may not actually make much of a difference! I advocate for diagnoses to be more autism-affirming, accessible to all, and also not a requirement to being a member of the autistic community. Regardless of whether you decide to get a formal diagnosis or not, being autistic is an identity and no one can take that away from you.

It’s worth noting that having a choice about getting a formal diagnosis is a privilege in itself. I was able to decide whether a formal diagnosis was within my financial means and something that would facilitate support. For example, at the end of the day, I am largely able to support myself and seek out my own external supports. There are many autistic individuals who need a diagnosis because they have higher support needs than me. There can be a lot of gatekeeping of supports within society (and even within the ND community) and you may need to get a diagnosis to have access to them.

Have you decreased masking? If so, how?

Dr. Natalie Engelbrecht ND RP

At first, I really did not know how to modulate myself. I was direct with people and had a few negative consequences, but I don’t regret it. People around me said I became more autistic after I was diagnosed. I did not, I just stopped pretending that I liked things that I did not. The biggest thing that I did was connect with other autistics through spaces I created where we could interact without masking.

I think the greatest challenge was that I had fooled myself and had no idea of who I really was, so it was a gentle process of asking myself what I did and did not want.

Eva Silvertant

I learned to mask at a very young age, when I noticed my parents were confused and disappointed by my lack of visible excitement upon receiving a birthday gift. I realized then that I had to exaggerate my excitement for their benefit. And as a teenager, I remember making a lot of effort to behave in ways that seemed to come intuitively to others. As eccentric as I was, in certain ways I did make an effort to fit in.

I think that started changing a little bit when I discovered I’m autistic when I was 19. Finally, I had a reason for my different behaviors and lack of intuition; I now considered myself autistic, rather than weird or broken. I think this shift in how I viewed myself allowed me to embrace who I am more, so I became more carefree when relating to others. Within reason, I must say. I still felt I couldn’t truly be myself, as this might lead to social rejection.

It wasn’t until I transitioned in 2021 that I made a very significant step to be my authentic self. Finally I felt that I could wear what I wanted to wear, and express myself as I had always desired. It was truly liberating! For the first year of my transition, I was really focused on—and borderline-obsessed with—being as authentic and as truthful as I could be. That was an amazing process, because I felt I could finally reveal what I had kept hidden for decades.

Hailey Revolone

I haven’t consciously decreased my masking, but being diagnosed was a significant step toward my self-understanding, which inherently influences how I relate to myself and others. I have noticed that I am less likely to bother with adding fluctuation to my voice; I’ll be monotone if I want to be!

I have also stopped forcing myself to engage in prolonged eye contact. It was never something I was good at, but now I have overcome the false belief that I “should” make eye contact. I now know that I don’t owe it to anyone; I am who I am, and if I want to be the best conversation participant I can be, that means I might be looking everywhere but your eyes—and I’m not sorry about it!

Shreddy Dee

I received a “minus in self-control” on every report card for my entire elementary school career. No one explained precisely what that meant—I only knew I was regularly reprimanded. Eventually, I learned to just be quiet and not attract attention, then I’d be left alone. That became a way of life.

So, I didn’t even realize the extent of masking, and I’m still often unaware I’m doing it. I aim to be more authentic within the parameters of being courteous, considerate, and respectful.

Dr. Debra Bercovici PhD

Similar to what has changed about my external world, I’ve decreased masking by trying to cultivate relationships that are more congruent with my lived experiences. It’s a lot easier for me to be authentic, or at least test out being authentic, with people who I know will understand me compared with people who do not. Almost all my current relationships are with other autistic/ND people.

Now that I understand what masking is and why I do it, I also decrease masking by thinking of it as a deliberate choice rather than an automatic defence mechanism. Instead of going into a space and immediately masking/camouflaging, I can now go into a space and decide if I want to be masked or not and how much I want to mask. That agency has really helped me be more deliberate about masking and judging whether I need to mask (for safety) or whether I want to mask before actually doing it.

What questions do you have with respect to the post-diagnosis lived experience? Leave a comment below, and I will endeavour to provide you with answers in a subsequent post.