Going Through the Diagnosis Process Has Been Hell, Advice??

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I get exhausted just thinking about having to go back to continue my diagnosis. I was told it would take six hours and I'd get a lunch break. It took all day and I still have (supposedly) two hours left to complete. On the first day, I worked on puzzles, pattern recognition, conversation, written tests, number recall in a variety of ways, picture recall, and testing my imagination and storytelling abilities. I had a meltdown at one stage when clicking the space bar whenever a letter emerged that wasn't X. It kept changing rapidly and then very slowly. At a few points I thought it was over and then a letter would return after waiting (impatiently) for a while. I had to walk out of the room as soon as it was completed. I collapsed on the floor in another room and pushed my head against the ground, rocking and sobbing. I was stimming badly during that test in particular but stimmed in a socially acceptable way the entire time. I left completely drained and broke down in the car.

What do you guys recommend to make the rest of my testing less exhausting and overwhelming?
What were your experiences like?

Who is giving you these tests?! A professional clinician is supposed to make sure that you aren't exhausted/overwhelmed because that can affect your test performance and lead to incorrect diagnoses. I have been through 3 evaluations. I was offered breaks and asked whether I felt ok during two of them.

Being a little tired is ok because that allows the examiner to understand your limits, but you should tell the examiner if you are on the verge of a meltdown. And if you're going to stim/meltdown anyways, you may as well do it in front of the examiner because that is important information for your evaluation. I know it might feel weird to lose control in front of a stranger, but the examiner needs to see you as you really are.

Six hours and then a break?! One break?! That is way too much testing for one day. Before my most recent evaluation, I was told the testing would take a maximum of 6 hours, and that was just in case the clinician needed to add extra tests. We had a few short breaks plus a lunch break during the four hours that it actually took.

Welcome to wrong planet.

Tough now but when the assessment is done you should have confidence in the results because the assessment is thorough.

It wasn't six hours and then a break. I had lunch at noon, came back and about three hours later had the meltdown. I took a break after that. I did have potty breaks but that was it. The guy kept walking in and then walking out. When I asked him why, because it was bothering me and breaking my focus, he said it was to check on me. I wish he'd stay put or stay out, lol. The only test he wasn't even in the room for was the one that led to the meltdown. It was the one where the letters blink rapidly on a screen and then change in speed over and over again for what seemed like forever. I couldn't take my eyes off the screen and that bothered me, plus it was nerve racking. It was right after one of the written tests and my mind and hands were tired. I knew I couldn't stop midway though. As soon as it said completed, I jumped up and left the room to cry and rock myself. He did see this, but he wasn't in the room to see all the stimming that preceded it.

I am stupidly stubborn when it comes to wanting to get something over with, especially when it's painful. I didn't want to have to continue another day and kept pushing through it. At some points I asked for a moment to collect myself but didn't leave the room. I just took a few breaths, closed my eyes, played with my weighted shoulder shawl and kept going. It wasn't until the very end that I felt like I couldn't go anymore. I told him I didn't know to most of the questions and told him I was exhausted. That's happened to be around the time they close for the day (it was around 4:30 and they close at 5pm) and so he said it was good timing so we could pick up again later.

My ASD assessment was similar to yours. It was all in one day with about 10 hours of tests but I had breaks, and I ate lunch alone in a storage closet (my choice, lol) to regroup. I was tired but the doctor was friendly and understanding. I was sat on the floor for a lot of the tests, even with the iPad and the puzzle blocks. There's no way I could be on a chair all day. I also stimmed as much as I needed, even stims that I would normally NEVER do in public which make me look silly. They helped to calm me. Yes it was exhausting and I was shut down for a few days afterward. I couldn't even listen to a radio or turn lights on because it was too much stimulation.

I'm in the midst of comprehensive ADHD test this month so I just had several hours of psychometry tests like you describe. The flashing letters and the number puzzles almost gave me a seizure. I think when one has ASD as well as ADHD the tests are even more gruelling to the nervous system (assuming you do have ASD, and I do have ADHD -- I'll get my official diagnosis of ADHD tomorrow).

Hang in there and rest assured it's all worth it. My ASD diagnostic report is a prized possession of mine because I fought so hard to survive the testing process, and it really describes all aspects of my autism to a tee.

Good luck!

Thank you!! That makes me feel so much better. I have already been diagnosed twice with ADHD but never had testing until now. In the initial interview she immediately noticed the ADHD before even the ASD symptoms. I continue testing on March 3rd. Please share your results when you get them (if you're okay with that). Good luck!!

I will definitely share my ADHD result. I have a thread here:

viewtopic.php?t=384481

I go back tomorrow for the report and prescription (neuropsychiatrist) and then again on Monday for therapy (neuropsychologist).

I can sympathise with what you're going through. Just be honest with your testing people, and tell them your feelings about the first day you went. A meltdown from sensory or stimulatory overload is completely understandable. It may be included in your ADOS analysis already, as a behavioural response.

Just guessing here but as posters were saying his walking in and out constantly was part of the assessment, it was designed test your reaction to interruption. The blinking letters on the screen for your reaction to change and visual sensory stimuli.

It is possible to be diagnosed with both ADHD and Autism.

Last edited by ASPartOfMe on 27 Feb 2020, 3:43 pm, edited 1 time in total.

I'm just rereading your post, Nic. Sorry to go off-topic but .. you have a weighted shoulder shawl?!

I need me one of those! What a brilliant idea! I'm on the hunt now.

Amazon! They are cheaper than getting a weighted blanket and I can bring it to work with me . I just bought noise cancelling headphones because the new office space is an open space concept to encourage interaction and the people upstairs are doing construction. I usually have to play classical music on my headphones when in stores so I don't freak out, but now even my semi-isolated desk job is getting frustrating, hence the weighted shawl. It REALLY helps me keep calm. I also place it on top of my head to apply pressure if I feel myself beginning to panic. Below is the link to the one I bought.
[url]
https://www.amazon.com/MAXTID-Weighted- ... 0330&psc=1[/url]

That's most likely the case since he only asked me a few times if I was okay. I kept stopping what I was doing and waiting for him to leave because I didn't want him coming in and out and interrupting me. I tried to be as nice as I could be but toward the end my patience was getting thin. He also tested me by raising his voice when he was saying numbers for me to repeat forwards and backwards. I asked him to stop and he did... only to start again, at which point I realized it was hopeless :sigh:

Sorry, I couldn't resist

As for advice, I haven't been in such an unpleasant situation myself so I don't have much, other than try to get some good zzzz's and eat a good breakfast. If you're a habitual coffee drinker, go ahead and have the morning joe, but don't drink any sort of caffeinated beverages (pop, energy drinks, etc) before the test. It probably won't help and will likely make you very jittery during the testing.

The final day of testing was exhausting but less so because I asked for more breaks. We did the alternating pattern test with colors, shapes, and numbers. We also did a long test where I had to select the correct shape and color over and over again among a long string of similarities that covered the page front and back (x2). I had a definitions test and verbal, mental math word problems. I also had to determine which 3 shapes (none overlapping) could produce the shape in the example. It was frustrating and humiliating like the last time, but thankfully wasn't as draining. I cried after shutting down with the verbal math problems that were word problems. It made me more nervous than last time because instead of walking in and out all the time, the guy kept looking at me and looking down at his notebook to write notes. I kept shouting in my head, "What the BLEEP are you writing?!" I had an almost meltdown with the final test because it was very trying and seemed to last forever (the alternating pattern test with colors, shapes and numbers). I got most of that right, and it seemed kind of fun, but I was getting frustrated because I was ready to go. I kept rubbing my fingers, kicking, tapping with my foot, fidgeting with my fidget cube (and broke it twice during the test... just like last time, lol), and grabbed my head while rocking. It wasn't nearly as bad as last time, but at least this time he saw it. He also wrote in his notes when I was completely focused on fixing my fidget toy. I did btw . I was told I will get the results via phone and to go home and rest. My boyfriend kept trying to engage me while I was eating afterward, but I just kept staring. I didn't want any noise, sights, or distractions of any kind. I just wanted to be numb. I'm feeling more normal after a nap, just a little down and nervous. I am afraid they will give me an incorrect diagnosis or that they will say that I am actually really stupid despite making it through college with honors. I felt completely exposed and I rarely allow myself to feel that way.

Hugs!!

I'm sorry it was so draining!! I know exactly how you feel because those were the same psychometric tests I did for ASD and even for my ADHD. I wanted to die afterward; they were so exhausting, confusing, and overstimulating.

When you get the results via telephone will they also have a written report for you?

I don't know. I just know they will "call when they know something". I have no idea even of a time frame and so I'm just impatiently playing the waiting game while doubting everything I thought I knew about myself.
I'm now just nervous, thinking, "What if I don't have it? What if I'm just a weird, shy, overly sensitive person with ADHD? What does that mean for me?" I've been so convinced that I have it that it is scary to me if I find out that I don't. I was terrible at the verbal math test but really good at the shapes/colors/numbers test. What if I was too good or too bad at something? I even thought to myself, "What if I'm actually really stupid and just never knew it?" How did you quell those thoughts and those voices in your head telling you that you're not enough or that you're completely alone in your weirdness.