I Reread My Neuropsych Evaluation Four Months Later
- 12 minsWritten by me, edited with robot assistance.
About four months ago I did a neuropsych evaluation that eventually led to me finding out I was autistic and had ADHD.
At the time, I mostly cared about the results.
Do I have autism?
Do I have ADHD?
What does this explain?
What am I supposed to do with this information?
I read the full evaluation when I got it, but I was reading it looking for answers.
Four months later, I went back and read it again.
And this time I noticed completely different things.
There are obviously a lot of test results in there. Scores, percentiles, charts, diagnoses, and a bunch of clinical words.
But there are also notes about how I acted during the evaluation.
I noticed them the first time, but I don’t think I really read them.
This time I did.
How I approached a problem. When I hesitated. What I asked before starting. What I said out loud. What I did when I wasn’t sure.
Little things that probably didn’t mean much to me four months ago.
Now they feel like some of the most interesting parts of the whole evaluation.
Apparently this is how I think
One of my favorite lines in the entire evaluation is:
“He often clarified before beginning tasks.”
Yep 😅
Not because I didn’t understand the instructions. The report specifically says my comprehension was fine.
I just apparently needed to make sure I understood exactly what we were doing before I started doing it.
Somewhere else in the evaluation I talked about how uncomfortable I get when I don’t know the “protocol” for something.
So while being evaluated for autism, I apparently kept making sure I understood the protocol for the evaluation.
Sounds about right.
There is another note that says:
“He was often hesitant to guess when unsure.”
Some of the tests were timed and I would apparently take long enough on certain questions that I’d run out of time.
The psychologist even noted that this probably caused some of my scores to be lower than my actual ability.
The funny part is that my processing speed was in the 93rd percentile.
So I’m fast.
Unless I don’t know the answer.
Then apparently we are all going to sit there until I do.
There was also a test called Block Design where I had to recreate patterns with blocks.
I loved this test.
At some point I apparently said:
“I could do this all day.”
I scored in the 95th percentile.
This also sounds about right.
I like problems.
I especially like problems where I understand what I’m solving.
Here is the thing. Here are the rules. Make the thing work.
I accidentally made a whole career out of that.
I build software for work. I build software when I’m not working. I build developer tools and apps and games and whatever other thing sounds interesting.
I also like being able to move across different teams and problems at work. I take a lot of pride and ownership in the things I build, but I don’t need to stay inside one team or one type of problem.
During the evaluation I called a lot of these things “side quests.”
That is now in my medical record.
Perfect.
There was another moment during a memory test where the psychologist was reading something to me and I asked if she could speak faster because I’m used to listening to things at 1.5x speed.
She could not.
Apparently you cannot change the speed of standardized neuropsych testing just because I listen to everything too fast 😂
And then I did very, very badly on the memory test.
Which brings me to probably the weirdest part of rereading all of this.
The differences are kind of wild
I knew from the first time I read the evaluation that I had strengths and weaknesses.
But four months later, the differences feel much more interesting to me than whether an individual score was “good” or “bad.”
My visual spatial ability was in the 95th percentile.
Block Design was 95th percentile.
Generating words from a meaningful category was 95th percentile.
Processing speed was 93rd percentile.
Remembering a story somebody had just told me?
Less than the 1st percentile.
Remembering the story after a delay?
Less than the 1st percentile.
Recognizing details from the story later?
Still less than the 1st percentile.
That is quite the range 😅
There are smaller versions of this all over the evaluation too.
Ask me to generate words from a meaningful category and I’m in the 95th percentile.
Ask me to generate words that start with a certain letter and I’m in the 16th percentile.
Ask me to repeat numbers backward and I’m in the 84th percentile.
Give me continuously changing auditory information to keep track of and I’m in the 16th percentile.
I don’t think I really understood how uneven a brain could be.
And I think that explains something I’ve struggled to understand about myself for a very long time.
Hard things can be easy.
And easy things can be really hard.
I can jump into a codebase I don’t know and happily spend hours figuring out how it works.
I can build something from nothing.
I can organize a conference.
I can get on a stage in front of hundreds of people and give a talk.
I can jump between teams and problems and figure things out.
And then I can have a message I need to respond to sitting there for days.
I can forget something somebody told me five minutes ago.
I can look at a few small things I need to do and not know which one I’m supposed to start with.
I can be holding something in my head, get interrupted, and feel like the thing I was holding just disappeared.
For a long time, that was confusing.
If I can do the thing that looks hard, why am I struggling with the thing that looks easy?
I don’t think I had a good answer for that.
So mostly I just found ways to keep going.
I made routines. I wrote things down. I made tools. I automated things. I found environments where I worked well.
I didn’t know I was accommodating anything.
I didn’t know I was autistic.
I didn’t know I had ADHD.
I just knew what worked for me and what didn’t.
I was still struggling.
I just got pretty good at working around a lot of those struggles.
Until there were more things than I could work around.
I was really good at being evaluated
This might be the most interesting part of the whole thing to me now.
During the actual testing, I did really well at a bunch of things I struggle with in normal life.
I stayed on task. I transitioned between tasks easily. My inhibition and task switching testing were normal. My sustained attention testing was mostly normal.
Basically, I was really good at sitting in a room and doing neuropsych tests.
Which is interesting because this is the same evaluation that talks about my real-world struggles with working memory, inhibition, task initiation, attention, and managing multiple demands.
Those things sounded contradictory to me at first.
But the more I think about the room I was in, the more they don’t.
The room was quiet.
There was one thing to do.
Somebody told me exactly what that thing was.
There was a beginning and an end.
When we were done, somebody else told me what came next.
I didn’t have to decide what deserved my attention.
I didn’t have to prioritize five things.
I didn’t have to remember what I was doing while responding to something else.
A lot of the structure I normally have to create for myself was already there.
And apparently I do pretty well in that environment.
Real life isn’t like that.
And I don’t want it to be.
I have a wife and two kids that I love. I have work I care about. I have a conference. I have friends. I have hobbies. I have side projects that I absolutely did not need to start but started anyway 😅
I want those things.
Having a full life just means there isn’t always one clearly defined thing happening at a time.
Sometimes multiple things I care about need my attention.
Sometimes plans change.
Sometimes I’m interrupted.
Sometimes work gets complicated.
Sometimes the environment is loud.
Sometimes I have more things I want to do than I have capacity for.
That’s part of having a real life with other people and things that matter to me in it.
My evaluation mentions that some of the things I was struggling with had become more noticeable as my life became more complex.
When I first read that, I think I mostly saw it as part of the explanation for the diagnosis.
Reading it now, I see myself in it a lot more.
I had spent a long time figuring out ways to function really well.
And when those ways weren’t enough anymore, I didn’t know why.
I just knew things that used to work weren’t working.
So I tried harder.
I tried new systems.
I tried to be more efficient.
I tried to get myself back to working the way I thought I should be able to work.
And eventually I couldn’t.
That is part of what led me into that room in the first place.
Four months later
I think this is the biggest difference between reading the evaluation then and reading it now.
Four months ago I wanted answers.
I wanted to know what I had.
I wanted to understand what was happening.
I wanted to know what I could change.
And I did get answers.
A lot of them.
But I was also exhausted.
I had spent a lot of time trying to get myself back to a version of me that could handle everything again.
So there was a part of me that immediately wanted to take this new information and do the same thing with it.
Okay.
Now I know how my brain works.
Now I know the constraints.
Now I can make better routines.
Now I can regulate better.
Now I can build the right environment.
Now I can get everything working again.
And some of that has been helpful.
I’ve learned a lot about what drains me. I’ve learned a lot about sensory regulation. I’ve changed some routines. I’ve gotten better at noticing when I’ve had enough.
I’ve gotten better at understanding why something that looks small can sometimes feel very big.
But I’m still figuring all of this out.
And I’m still struggling.
That part is important.
Four months of knowing I’m autistic and have ADHD didn’t suddenly make the hard things easy.
I still get overwhelmed.
I still get exhausted.
I still have days where starting something feels impossible.
I still have times where there is too much happening and I don’t handle it the way I wish I could.
I still have to recover.
I think I’m just starting to look at those things differently.
I’m very good at solving problems.
Give me a problem and I will probably try to solve it.
Give me a system and I will probably try to make it work better.
That has served me really well.
But I don’t want understanding myself to turn into another project where success means never struggling again.
I don’t think that is the goal anymore.
Sometimes understanding why something is hard means I can change something.
Sometimes it means I can prepare for it.
Sometimes it means I can ask for help.
Sometimes it means I can do less.
And sometimes it just means I understand why today is hard.
I don’t always have to turn that observation into a fix.
That is still a very weird thing for me to learn.
“I could do this all day”
There are eighteen pages in this evaluation.
There are diagnoses and scores and recommendations and charts.
Those things mattered a lot to me four months ago.
They still matter.
But this time I found myself paying more attention to the little observations.
The fact that I kept clarifying instructions.
That I didn’t want to guess when I wasn’t sure.
That I wore my hood through the evaluation.
That I asked the psychologist to talk at 1.5x speed.
That I talked through my thought process out loud.
That I could transition easily when somebody else provided the transition.
And that when somebody sat me down in front of a bunch of blocks and gave me a problem to solve, I said:
“I could do this all day.”
I like that one the most.
Not because I scored well on it.
Because I recognize that person.
Four months ago I read the evaluation trying to find answers.
This time I mostly just saw myself.
And that was actually pretty nice. 🙂
