Would it be possible for you to describe what particularily triggering aspects of these tests might be?
There are several potentially triggering aspects of autism testing. Not everyone feels this way, but these are things some people experience:
The tone of the evaluation might be triggering in itself:
- On Tumblr, looking for autistic attributes can be a positive or neutral thing
- A lot of people here have a positive view of autism
- And a matter-of-fact approach to autism-related difficulties
- Autism testing is not like that
- Autism testing is looking for flaws, and is based on the assumption that autistic traits are unfortunate and undesirable
- That can be hard to deal with. It can be very unpleasant to demonstrate over and over that you have highly stigmatized attributes, especially if the person testing you doesn’t understand why the stigma is unjustified
- It can help to keep in mind that there is a community of people who respect your brain just the way it is, and that acceptance is more powerful than medical stigma
Having to do stuff you’re bad at over and over while someone watches:
- Autism testing aims to conclusively demonstrate that you’re bad at certain things
- Given that autism is highly stigmatized, it’s likely that you’re insecure about at least some of the things you’re being tested for
- You may be accustomed to trying to hide and cover for things you can’t do no matter how much people tell you that you should be able to
- Testing involves showing the person evaluating you, over and over, that you can’t do certain things, or can’t do certain things in the ways expected for neurotypical people your age
- That can be painful or frightening
- It can help to remember that you can’t actually flunk a neuropsych evaluation
- You’re ok, and doing things badly on neuropsych tests doesn’t mean that you’re bad or that you’re failing. It just means that you’re disabled in some way, and that’s ok.
- It still might feel really, really bad. That’s not your fault, and you’ll be ok even if the testing is very upsetting
Some tests that you may have involve reading out loud:
- You might take a vocabulary test that involves reading many words out loud
- Some of them are words most people don’t know
- So it’s likely that you will end up having to mispronounce a bunch of words
- This can be upsetting or triggering if you’ve been made fun of for reading mistakes, (or if being good at reading is an important part of your identity)
- There are some tests in which it’s not possible to get every answer right
- eg: There’s one test involving sorting cards in which they change the rules periodically to see how you react to changes
- It can help to keep in mind that some of the tests might be intentionally messing with your perceptions, or otherwise intentionally confusing
- It’s ok to be confused during testing.
Not being understood or believed:
- Some of the concepts used in autistic and developmental disability self-advocacy have not made it into the mental health and neurology professional communities
- For instance, it is likely that the person evaluating you will not fully understand your explanation of why and how you stim, even if they know some things about the importance of stimming
- They also might not understand or believe you about your communication, especially if it defies stereotypes
- Eg: if you demonstrate a high verbal IQ, they might have trouble understanding if you say that you’re sometimes functionally nonverbal
- eg: If you say that you understand metaphors and body language but have trouble with overly literal technical language, they might not understand that
- The specifics vary a lot, but it’s likely that there will be *something* significant that they don’t understand or believe you about
- Further, some things that have made it into professional knowledge, and even the diagnostic standards, are not necessarily common knowledge among all professionals
- For instance, some psychiatrists believe that autistic people can’t have empathy, and will think that people who understand emotions can’t be autistic
- It helps to keep in mind that you don’t need the person evaluating you to fully understand, or even to be particularly insightful about autism
- The main thing you can get from a diagnostician is a diagnosis, and documentation of your need for accommodation and/or services
- Anything else is a bonus; good if you can get it, but not something to count on
- Keep in mind that the person diagnosing you is not your only means of support, and that you can get help and insight elsewhere if you don’t get it from them
Bringing up childhood memories:
- One requirement for autism diagnosis is that symptoms have to have been present in early childhood
- This means that they will ask you about childhood
- They might also ask to talk to your parents, or to see records related to childhood
- This might be very painful to think about, especially if some of your earliest memories involve adults in your life thinking there was something very wrong with you and trying to change you
- It also might be hard to discuss with family members, especially if they feel guilty or are defensive.
- It can help to remember that you can’t actually flunk childhood, no matter how bad some of it was at the time
- And that you’re not broken, and it wasn’t your fault if adults didn’t understand, and it wasn’t your fault if they hurt you
- And that you’re not a child anymore, and that you will never have to be a little kid who adults are deeply concerned about ever again.
- You may have some kind of mental health testing
- You will probably have a depression and anxiety screening
- If your disability or health issues have been dismissed as depression/anxiety in the past, this might be frightening
- It also might be hard if you’ve had bad experiences with therapy in the past
- It can help to remember that this is probably not a primary part of the evaluation
- It can also help to remember that, even if you have a mental health condition, psychiatric disability, or are crazy (including all three concepts because different people prefer different concepts for valid reasons), it doesn’t mean you’re not autistic. It’s possible, and common, to have both.
Social skills and empathy testing:
- Some autism tests are supposed to test your ability to feel empathy, understand emotions, hear tones of voice, and understand body language
- These tests are utterly ludicrous
- Some of them are based on offensive stereotypes
- One involves looking at pictures of actors with exaggerated facial expressions and saying which emotion you think they’re feeling. (They provide a list of seven.)
- Taking ludicrous tests might feel degrading in itself, especially if you can’t answer the way they want you to
- It might help to remember that these tests are not actually reliable indicators of your understanding of other people
- If you’re being tested for autism, it means that someone else will be deciding whether or not to diagnose you
- This might also mean deciding whether you qualify for services you need
- Or whether you qualify for legally-mandated accommodations you need
- It can also affect how you see yourself, and how others see you
- That’s a lot of power to put in someone else’s hands, especially if their understanding of autism is partial
- That can be very scary, especially if you’ve had bad experiences with testing or gatekeeping in the past
These are the potentially triggering and painful aspects of autism testing that I know about. Does anyone want to weigh in about others?
I didn’t find any of my evaluations particularly stressful. This may be because I was already familiar with most of the people conducting the tests and had a generally positive opinion of them. It may also have been because I wasn’t aware that they were testing for anything in particular.
But while the process itself was not at all triggering for me, reading the report that resulted from the evaluations was very triggering. I didn’t gain access to this report until a few years after the testing, and over that time I had become very comfortable with my diagnosis, and most of the self-consciousness that I developed in the immediate aftermath of being diagnosed had long since faded away. But reading the report brought all of it back, and in ways it was worse, because I now had more specific details to be self-conscious about. It took me months to shake off this renewed anxiety, and for about a year after that it would occasionally reappear for a few days.
I found the report triggering because of how it zeroed in on every little thing about me that wasn’t “normal”, some of which I wasn’t aware of. Many of these behaviours were described as having been observed during meetings that I had no idea I was being so closely observed during. They dissected everything about my body language, pointed out details about how I held my hands and feet, my habits around eye contact, things that I had no awareness I was even doing, had no idea there was anything unusual about, and they’d noticed these things during times when I believed I was in a safe space. They noticed these things that I wasn’t even aware of, and then described them in a report in a way that made me out to be extremely unusual, almost alien. They dissected my clothing choices, the condition of my hair, my interests. Quoted me in ways that felt out of context when I read it. There was no hint of any compassion or understanding in the report. It was extremely clinical and detached and seemed to exist solely to point out everything that was “wrong” about me. And it was written by people that I had trusted and felt safe with.
It took me a long time to fully recover from reading that report.
So that’s an important thing to remember. No matter how smoothly the evaluation goes, the report itself could be very triggering to read, in ways you might not be expecting. That doesn’t mean that you shouldn’t read it. There are some very good reasons to read that kind of report about yourself. But if you do, it’s important to be prepared for the content, and to make sure you’re in a position to care for yourself properly afterwards.
This is important. Thank you.