Valérie-Anne O'Callaghan
The typical story about a late diagnosis ends in relief. Finally an explanation, finally the pieces fall into place, finally you know you weren't broken.
All of that happens. And there's usually something else that almost no one announces, which comes shortly after and is much more uncomfortable.
When the relief ends
The first few days or weeks are somewhat euphoric. You read everything you can get your hands on, recognize childhood memories, and understand reactions that had remained unexplained for decades. It's an intense and generally good period.
And then comes a question that needs to be addressed: how long.
How much time spent demanding things of oneself that weren't due. How many jobs abandoned or lost over something that had a name. How many relationships broken down in a misunderstanding that is now understood. How many years interpreting one's own exhaustion as a lack of character.
That question opens a conflict. And like any conflict, it can't be resolved through reasoning.
What exactly is being lost?
It is worth clarifying this, because the object of this duel remains elusive.
Time. The most obvious thing. Decades of misdirected effort, of trying to fix what couldn't be fixed that way.
A version of oneself. The person you thought you were, with their explanations for why certain things were difficult, ceases to exist as such. Even if the new explanation is kinder, the old one was your own.
The expectation of future improvement. Many people have spent years believing that more discipline, more therapy, or more maturity would resolve their difficulties. The diagnosis closes that door. What exists is a different configuration, and that means managing it rather than trying to overcome it.
Relationships that can no longer be repaired. The people who drifted away without understanding, the bonds that were broken due to an accumulation of misunderstandings.
Anger
This part is almost never mentioned in public and appears in almost every trial.
Anger towards those who didn't see it. Parents, teachers, professionals who evaluated and dismissed, partners who misinterpreted as disinterest what was something else entirely.
That anger is justified. There were signs, often obvious, and they were ignored. And at the same time, it's often accompanied by a complicating factor: many of those people did what they could with the information available. The diagnostic criteria from thirty years ago didn't include this profile. The training of those professionals didn't encompass what we know today.
Maintaining both positions simultaneously—that the harm was real and that most people didn't act with malicious intent—is considerably more difficult than sticking to just one. And that's where the real work often lies.
Rereading the biography
After the anger, or mixed with it, comes a long task: rereading one's life with the new information.
Memories that were filed away one way are now being revealed another. The episode where you froze and interpreted it as cowardice. The friendship that cooled without you understanding why. The breakdown after that intense period, which you attributed to weakness.
This rereading isn't just intellectual. Memories come with their physical charge, and revisiting them activates the body. Many people describe this period as exhausting, and it makes sense that it is.
It's best to take things slowly here. Reviewing fifty years of one's life in three weeks is a burden that no nervous system can handle well.
The duels around
There are also griefs that are not one's own and that affect us.
The one from the couple, who has to reorganize their understanding of the person they live with, and sometimes revise interpretations they held for years.
The parents' one, ...while they are still alive. Some receive it with relief, others with guilt, others with outright rejection. The defensive reaction is common and adds pain to an already painful situation.
The one about the children, ...when they are also neurodivergent. A particular layer emerges: understanding that what was transmitted included this, and sometimes the guilt for not having seen it in them before.
What helps
Acknowledge that it is a grief. Giving it that name changes the expectation. Nobody expects to go through grief in two weeks or resolve it with optimism.
Don't force gratitude. The discourse of networks is rapidly pushing towards the celebration of neurodivergence, and getting there ahead of time often means skipping the difficult part, which then returns.
Regulate the pace of rereading. When reviewing the past starts to cause sustained exhaustion, it's best to stop. The process has no deadline.
Find someone who has gone through the same thing. The literature on well-being in autistic individuals consistently highlights the value of peer contact. In this specific process, talking to someone who has experienced the same grief significantly reduces loneliness.
Working on the body, and not just understanding. Grief is also processed physically. Movement, deep breathing, secure contact. Intellectual understanding of the process is rarely enough to get through it.
Where does it end?
It doesn't end completely, and at the same time it changes shape.
After a while, the anger subsides and rereading the story fades from the forefront. What remains is a different relationship with their own history: the same events, with a different explanation, and without the burden of guilt they once carried.
And something that only appears after grief, and not before: the possibility of organizing life based on what is, instead of what was believed to be what it should be.
That's something else entirely. And it does happen, though not in the first month.
Sources and references
Cage, E., Di Monaco, J., and Newell, V. (2018). Experiences of autism acceptance and mental health in autistic adults. Journal of Autism and Developmental Disorders, 48(2), 473-484.
Leedham, A., Thompson, A.R., Smith, R., & Freeth, M. (2020). 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146. University of Sheffield.
Milner, V., et al. (2024). Does camouflaging predict age at autism diagnosis? A comparison of autistic men and women. Autism Research.
Porges, SW (2011). The Polyvagal Theory. WW Norton. Neuroscientist, Indiana University.
Raymaker, D.M., et al. (2020). Defining autistic burnout. Autism in Adulthood, 2(2), 132-143. Portland State University.