Everyone I assess is unique, though the experience of living through several (or many) decades of life while not knowing you are autistic can lend itself to some common experiences. Below, I describe a few of these patterns that I often notice in adult autism assessments. I’m neurodivergent myself, and a variety these patterns (though not all) apply to myself as well.

Nervous about the Assessment Interview

One of the common things I hear in my clinical interviews is probably that my clients are feeling nervous about the interview, for all kinds of reasons: they dislike phone calls, they’ve had negative/dismissive experiences with healthcare people in the past and are concerned I may do the same, they are uncomfortable with new people, they aren’t sure what I’m going to ask them or what to expect so that can be uncomfortable, they aren’t used to opening up so much or being vulnerable, and so on. I hear some variation of this from probably 95% of my clients—so you’re certainly not alone if some part of the assessment process makes you uncomfortable.

Self-Doubt

Another very most common concern I hear from my clients is that they feel self-doubt about whether or not they are neurodivergent. Often they’ve spent a lot of time informing themselves about the various characteristics and have reflected carefully on their own experiences, but then they’ll see some part of the criteria that doesn’t seem to apply, or see a video where someone discusses their experience of routines or special interests or anything, and think “Hm, that sounds different than how I experience [the thing], and this person seems certain that they’re autistic, so maybe they are and I’m not?”, or worrying that they might not be ND because their support needs are relatively low at times, and so on. There are many possible sources for self-doubt. While autistic people are surprisingly good at self-diagnosing, it is a very complex experience with far more co-occurring conditions and differential diagnoses than you typically find with other assessments.

Masking

The rest of the patterns won’t be in any particular order, but social masking (or camouflaging) is extremely common, especially in late-diagnosed people. In an assessment interview, I sometimes hear clients express concerns such as: since they mask so regularly they might keep doing it in the interview, and/or that they find it hard to stop masking (especially around new people, like me as their interviewer), and/or they struggle to know what their authentic behaviour is even if they wanted to show me, and so on.

It’s a reasonable concern—how could I see passed or through this mask and recognize what might be autism in a person who spends most of their time in social encounters hiding it? All I can say is that I’ve worked with autistic adults for many years, I’m autistic myself which I think deepens my insight in this area, and we’re directly discussing a wide array of behaviours that relate to autistic characteristics (which is very unusual compared to ‘normal’ discussions). In my experience, these concerns have never proven to be problematic during an interview. While I empathize with these worries, they have yet to pose an issue in my assessments.

Anyone can receive implicit and explicit social feedback that basically says “the thing you just did was weird/bad, and you should stop doing it.” But autistic people often have quite a few characteristics that are different enough from the ‘norm’ that they will hear a ton of this criticism. If a child has the capacity to take note of this feedback and act on it, then what that usually means is that they reduce/hide/suppress whatever that behaviour was. And the cycle repeats: we get more feedback so we hide more and more parts of ourselves, until eventually we’re constantly hiding most of our identity and, after decades, can be left wondering who we are—where the mask stops and starts. Usually, the more effectively a person can mask, the longer it will take for them to get assessed, if they ever do. Typically, adults don’t suspect that they’re autistic until social expectations for neurotypical behaviour begin to outweigh their ability to perform those behaviours.

Often the things we’re asked to stop or hide make us feel shame, and it’s common for autistic people to internalize this feedback and even ‘police’ themselves. Yet, ND people do a lot of those things for a reason, for example stimming to reduce distress, or ‘odd’ behaviours and requests to try and accommodate for sensory sensitivities or social difficulties, and so on. The result is generally 1. the difficult task of socializing is now even more exhausting because we have to monitor a million things about ourselves in every conversation and 2. we have fewer (or now zero?) coping skills and outlets for emotional energy. Except, that energy has to go somewhere, so we “shut down” or have “meltdowns” and typically we are blamed for this behaviour too. The mere experience of being neurodivergent doesn’t seem to be inherently stressful; being forced (or trying to force yourself) to live in an insistent, non-accepting neurotypical world is what seems to be stressful. Another common childhood experience for my clients is often feeling socially confused, awkward, unsure, and rejected.

Identity

As I mentioned above with masking, identity confusion is quite common in autistic people, perhaps especially in people who were ‘assigned female at birth.’ If you spend enough decades being a social ‘chameleon’, it gets hard to know which version is ‘you.’ If your authentic, non-masking behaviour gets you criticism, but your masking behaviour gets you compliments—well that’s just more fuel for the identity confusion, self-criticism, and shame. Fortunately, finding out you’re autistic often really helps with this identity piece and helps us make sense of what has often previously felt like a lifetime of confusing, awkward, and difficult to explain behaviours and experiences.

Burnout

Going through cycles of autistic burnout is very common, even more so if a person is (at least periodically) employed. Masking is exhausting and can lead to burnout, as can not knowing about or not accommodating well enough for your ND differences. Lack of accommodating is usually either because we aren’t aware of the specific need or circumstantially it isn’t possible to accommodate for it (e.g., wanting a quiet place to live but for financial reasons living with family or roommates etc.). The experience of autistic burnout isn’t too different from “regular” burnout, though during autistic burnout some/many of a person’s autistic characteristics can become more intense or severe. For example, your sensory sensitivities may be more sensitive than you’re used to, or your capacity for masking may be reduced, and so on. When a person doesn’t know they’re autistic, this kind of burnout cycle may be mis-identified as depression, anxiety, avoidance etc.

Trauma

Neurodivergent people seem to have a higher likelihood than normal to have experienced potentially traumatic experiences, or perhaps they’re more likely to be traumatized by difficult social experiences. Anyway, many of my clients describe a mixture of autistic characteristics as well as some effects of trauma. It’s complicated and usually pretty heavy/difficult to be experiencing, and it’s very common.

Parents deciding not to get their child assessed

A bizarrely high percentage (though probably less than 50%) of my clients tell me some variation of the idea that one or both of their parents actively pushed against attempts to have the client assessed as a child. Often, a teacher or doctor would be suggesting an assessment, or results from someone like a speech language pathologist, school counsellor, educational testing, or similar indicate that further assessment is warranted. The parent then suppresses the idea of an autism assessment, and I sometimes hear the rationale that the parent didn’t want that kind of diagnosis on their child’s “health record.” The parent presumably found it embarrassing, stigmatizing, shameful, were overwhelmed and didn’t know how to handle it, were neglectful, abusive, or lots of other things. I believe that it’s far better for a person to know about their neurodivergence, that their ability to learn accurate things about themselves and accept themselves is massively improved by that kind of self-knowledge. The alternative, as I often hear (and spent a few decades feeling), is feeling that you are some combination of: weird, alien, broken, awkward, too emotional, too sensitive, stubborn, bad, ashamed, and so on.

Emotions

Autistic people often have a seemingly different emotional experience. What I often hear is something like “I feel emotions very intensely when I do feel them and it’s usually overwhelming, though it can be hard to know what exactly it is that I’m feeling. I’m really sensitive to other people’s moods, especially when they’re upset. Other times, I feel really overwhelmed and kind of shut down and emotionally numb.”

Struggling with cognitive empathy (theory of mind) is fairly common for autistic people, as is having high affecting (emotional) empathy. But! about 50% of autistic people also have alexithymia (difficulty noticing, identifying, and articulating their emotional experiences) and! autism often comes along with some differences in executive functioning that can also lead to difficulty with regulating emotions. As a side note, perhaps 30% of autistic people also meet full criteria for ADHD, and ADHD often brings its own executive functioning and related emotional regulation differences. In general, to regulate our feelings we need to:

1.     Be able to identify our emotions,

2.     Recognize which events those feelings are related to, and

3.     Have emotional coping strategies that help us deal with that emotional energy and its intensity.

Having alexithymia and/or poor interoception makes steps 1 (and then 2) more difficult (though not impossible), and being part of modern society means that for most of us, we learned almost nothing useful about step 3 while growing up. I wrote lots about this in the general recommendations for any late diagnosed adult document (that I send to everyone who does the assessment), though there are many free resources online for emotional health, alexithymia, and coping skills etc.

Intellect

A final point that I hear perhaps 30 or 40% of the time is people noting that they find it strange that they can be so skilled or good at certain things yet struggle so much with other seemingly non-complex tasks. For example, being very skilled at research, analyzing information/systems, or writing, yet struggling with verbal communication or using maps, or doing great when learning independently but struggling to learn in a classroom setting. Further, it’s common to observe neurotypical people who seem to do many of these tasks with apparent ease, and in that comparing, feel bad about ourselves. Often ND people feel embarrassed about these kinds of difficulties, or even ashamed, and this is made more likely if you’ve been criticized growing up for not learning fast enough, being “lazy”, “stupid”, and so on. All of that makes it harder to ask for help, and it’s pretty easy to internalize this kind of negativity and then we’re criticizing ourselves. Part of this is simply from being criticized or rejected in situations for acting a bit differently, and another part of it is that it’s somewhat common for autistic people to have what the DSM would call an “uneven intellectual profile.” I’m not going to speculate as to why that is, but our brains are a bit different, not bad—just different. Some people are highly skilled in some areas and less so in other areas (I suppose that’s true of literally everyone, in a way). This is ok and a good opportunity for self-acceptance.

To wrap up, I understand that everyone is unique and just because I notice these patterns in many of my clients, it doesn’t mean I make assumptions in my adult autism assessments, nor does it mean that if you don’t fit all of these patterns then you couldn’t be autistic. One of my base beliefs about the world has always been that whatever idea/problem/concept/system I’m considering, it’s very likely more complex than my current understanding of that thing is. My hope with sharing the above patterns is that it may help you feel a bit more understood and a bit less alone.

~Iain