I'm Getting Evaluated Again

[chincey_james]

Almost to my own surprise, I just called a local autistic diagnostic center and booked myself in for an initial consultation in 2 weeks.

Why would I do that if I was already diagnosed earlier this year? Those of you who have read my posts during the brief amount of time I've been here might be familiar with the fact I've struggled with believing my original diagnosis. I haven't stated where I obtained that online diagnosis, but I will now: Embrace Autism. I don't want to slander the organization or anyone who feels they have received benefit from it. I will just state that I feel their diagnostic process was not as in-depth or personal as I need an autism diagnosis to be. None of this should be taken to cast shame on anyone who is self-diagnosed or diagnosed via Embrace Autism.

I don't necessarily doubt that I am autistic, but my brain is not allowing me to function anymore without knowing for sure. I have had enough of this anxiety of not knowing and am starting on a journey to get evaluated again. It's a costly thing to undergo twice, but I would argue that I've never truly undergone it to the level I require. My partner is supporting me yet again because he is sick to death of my obsessing over whether I'm autistic; to him, it's very obvious. At any rate, within a few months I should have answers that will satisfy me. Maybe I'm not even autistic. Maybe I am. We shall see.

I'm hoping to update this thread throughout the process. Now to update my diagnosis status here...

 

[Rodafina]

It sounds like you need something external to tell you. That’s interesting to me, because I trust my own experience and those on the forum more than I trust the diagnostic tests. It seems like learning more about autism and hearing more stories of people’s varied experiences with autism can be a very validating thing for many of us.

That’s not to say that I don’t think you should do what you’re doing. It’s your life, your brain, and your choices. I can understand feeling like the first diagnostic process was less thorough and more biased than is comfortable for you. In that way, it makes sense to do what you’re doing.

Just remember that no test, especially one partially administered by another human being is ever infallible and there are many factors to adult diagnoses that people are still learning about. For example, masking.

Many folks who have an official diagnosis still wrestle with imposter syndrome, so there may be a reckoning within yourself that must happen eventually, diagnosed or not.

 

[Neonatal RRT]

I agree that many of these online tests are subjective, leaving it open to influence. Written tests do have a potential role, but may be influenced by confirmatory bias if you know enough about the condition to answer "correctly". The psychologist interviewed my wife alone, then interviewed and tested myself alone, and had 2 other people in a cognitive performance lab running me through a series of different tests while simultaneously assessing my response times and body language. If they had offered genetic testing and/or EEG and brain imaging I would have gladly paid for that, as well.

 

[Rodafina]

If they had offered genetic testing and/or EEG and brain imaging I would have gladly paid for that, as well.

That's what I would like to see.

 

[chincey_james]

I wish self-diagnosis could satisfy me, let alone the 'official' one I already have. Logically, I don't think self-diagnosis is invalid. But my brain is not logical in this way (at least not yet).

I just have a fear of being seen as a person who is trying to be 'quirky' by claiming autism or, worse, that I am claiming a space that isn't my own. I've seen the mockery of such individuals on Reddit. At the same time, I don't know why I would let bullies sway me on this, and I also don't objectively know anyone in my life who is as quirky as I am. It's a strange equation to work out.

Here's the other factor: My partner believes in me being autistic wholeheartedly, but every time he calls me autistic, I cringe, because I feel like it might not be true. I don't want to deceive anyone. He has told his entire family and friends. Maybe him believing it is all that matters anyway since I'm not seeking accommodations.

It's very possible I will meet with the doctor and decide to pursue it no further because I end up realizing that, like Rodafina said, this is a reckoning within myself and nowhere else. I wonder if I will end up resting content with a self-diagnosis if I don't follow through on this new journey.

I'm a mess. That about sums it up!

 

[Rodafina]

Sometimes, things get a little messy.

Sometimes, I'm a mess, too.

 

[chincey_james]

One other thing gives me pause. I feel like I am King of the Maskers. I am concerned that the doctor will be dismissive in some ways due to my verbal talents. I read at least one bad review of her that said as much.

Embrace Autism obviously thought I was autistic. My partner thinks I am autistic. Will this doctor help to remove this imposter syndrome? Rodafina, your initial post has me questioning that.

I have these symptoms without a doubt:

- I am a completely different person in social situations than I am when I am alone. I feel like an actor performing an act so the other person will think I am normal.

- I rehearse conversations before and after. I ruminate on every aspect.

- I have paced and picked at nails and skin from a very young age.

- I have always made odd verbal noises when I am alone or with my partner. Sometimes voice impressions or otherwise just fake songs.

- I have had lifelong sensitivities to velvet or valeur and bright lights and noises. I used to feel panicked going to the grocery store with my mom.

- I have incredibly specific preferences on everything from spoons to beds. Not having them right is seriously upsetting.

- On several occasions I have had meltdowns in front of my partner. The last time triggered by being hot in a car and my partner not turning the AC on until I told him what the matter is. I began repeating the same words over and over and crying and hyperventilating.

- I eat at 8 am, 11 am, and 4 pm every day and am seriously put out if this gets thrown off. I can't stand interruptions to my routine. An unexpected visitor can ruin my day.

- Every friendship I ever have had has failed when it had to grow beyond just playing video games. Everyone stopped talking to me in every instance.

- My partner says I am too literal and problem-solving focused in conversations and that it drives him crazy.

Not looking for a diagnosis from you all. But reading those things, do you think I am unfounded or foolish to claim being autistic?

 

[Rodafina]

One other thing gives me pause. I feel like I am King of the Maskers. I am concerned that the doctor will be dismissive in some ways due to my verbal talents. I read at least one bad review of her that said as much.

Embrace Autism obviously thought I was autistic. My partner thinks I am autistic. Will this doctor help to remove this imposter syndrome? Rodafina, your initial post has me questioning that.

I have these symptoms without a doubt:

- I am a completely different person in social situations than I am when I am alone. I feel like an actor performing an act so the other person will think I am normal.

- I rehearse conversations before and after. I ruminate on every aspect.

- I have paced and picked at nails and skin from a very young age.

- I have always made odd verbal noises when I am alone or with my partner. Sometimes voice impressions or otherwise just fake songs.

- I have had lifelong sensitivities to velvet or valeur and bright lights and noises. I used to feel panicked going to the grocery store with my mom.

- I have incredibly specific preferences on everything from spoons to beds. Not having them right is seriously upsetting.

- On several occasions I have had meltdowns in front of my partner. The last time triggered by being hot in a car and my partner not turning the AC on until I told him what the matter is. I began repeating the same words over and over and crying and hyperventilating.

- I eat at 8 am, 11 am, and 4 pm every day and am seriously put out if this gets thrown off. I can't stand interruptions to my routine. An unexpected visitor can ruin my day.

- Every friendship I ever have had has failed when it had to grow beyond just playing video games. Everyone stopped talking to me in every instance.

- My partner says I am too literal and problem-solving focused in conversations and that it drives him crazy.

Not looking for a diagnosis from you all. But reading those things, do you think I am unfounded or foolish to claim being autistic?

Well, I can definitely relate to that list! So much of what you wrote about yourself is true for me.

But, keep in mind that I am self diagnosed. However, I have absolutely no doubt whatsoever about being autistic.

Knowing about autism helps me to understand with great clarity what is happening in my brain and some of the things I can do about it. It also helps me accept some of the things about myself that have been challenging. This gives me information to adapt my behavior and adapt my thinking.

There are benefits to having a formal diagnosis that some people here on the forum have shared. But there are equal benefits to internally accepting autism and seeing where you can relate to other autistic individuals and further your understanding of your own brain.

I’m not trying to sell the forum, but I would really recommend that you stay here and continue to read posts and ask questions in your own threads.

It doesn’t really matter if you are autistic or not – you are welcome here and it sounds like there’s a very good chance that you will be able to relate to the experience of others and learn a lot about what people have done about sensory and social challenges, unmasking, and managing meltdowns.

If you like the different types of things we talk about here and you are benefiting from it, then it doesn’t even matter if you call yourself autistic or not. You’ll have evidence that you highly relate to other autistic people and some of their experiences sound very much like your own. In the meantime, you don’t have to call yourself autistic if you don’t want to… Lots of people don’t even fully understand what that means and will take a great deal of explaining, anyway. It’s not something you necessarily have to broadcast to the world and wear like a badge.

This could be a journey about understanding yourself rather than finding an appropriate label.

 

[Slime_Punk]

From experience and reading about others on here, I can say for sure that 'imposter syndrome' is very common even long after diagnosis. Things can change over time with the acceptance of family members and friends when you allow it to be a part of your identity, but prior to that point it can be a difficult pill to swallow.

There's nothing wrong with seeking a second diagnosis, just keep in mind that this might lead to a lot of other questions, especially if one professional deems you autistic and the other does not. Because that could mean chasing the diagnosis for even longer, looking for a third opinion, possibly a fourth, etc.

I think it's generally accepted that if you've scored high on the tests consistently and / or been diagnosed by a professional already, there's probably no question about it. But you do you . If ASD was a label created by people to describe our collective experience and how it differs from the NT's, it's going to be pretty hard to find a concrete, science-based answer. Sometimes you just have to rely on other humans.

 

[chincey_james]

I'm hitting some hard realities tonight thanks to you all posting such thoughtful responses.

I think I acted impulsively and irrationally today by jumping so quickly to a second diagnosis.

Perhaps I was too hard on Embrace Autism too.

I gave Embrace Autism all factual information and test answers. I was told I was "without a doubt" autistic following my diagnostic session.

Maybe my expectations and self-perfectionism are lying to me and THAT'S where I need to put my attention right now. I'm certainly risking my partner's sanity by ruminating on the diagnosis validity. If I pursue this second diagnosis, that would be yet more money drained from my health savings account.

 

[vergil96]

One other thing gives me pause. I feel like I am King of the Maskers. I am concerned that the doctor will be dismissive in some ways due to my verbal talents. I read at least one bad review of her that said as much.

Embrace Autism obviously thought I was autistic. My partner thinks I am autistic. Will this doctor help to remove this imposter syndrome? Rodafina, your initial post has me questioning that.

I have these symptoms without a doubt:

- I am a completely different person in social situations than I am when I am alone. I feel like an actor performing an act so the other person will think I am normal.

- I rehearse conversations before and after. I ruminate on every aspect.

- I have paced and picked at nails and skin from a very young age.

- I have always made odd verbal noises when I am alone or with my partner. Sometimes voice impressions or otherwise just fake songs.

- I have had lifelong sensitivities to velvet or valeur and bright lights and noises. I used to feel panicked going to the grocery store with my mom.

- I have incredibly specific preferences on everything from spoons to beds. Not having them right is seriously upsetting.

- On several occasions I have had meltdowns in front of my partner. The last time triggered by being hot in a car and my partner not turning the AC on until I told him what the matter is. I began repeating the same words over and over and crying and hyperventilating.

- I eat at 8 am, 11 am, and 4 pm every day and am seriously put out if this gets thrown off. I can't stand interruptions to my routine. An unexpected visitor can ruin my day.

- Every friendship I ever have had has failed when it had to grow beyond just playing video games. Everyone stopped talking to me in every instance.

- My partner says I am too literal and problem-solving focused in conversations and that it drives him crazy.

Not looking for a diagnosis from you all. But reading those things, do you think I am unfounded or foolish to claim being autistic?

I can relate too

 

[chincey_james]

Well, I canceled the apppointment. I'm resolving today to accept my initial diagnosis despite any doubts. A label from a professional is great (and I already have one, including a doctor's note for accommodations if I wanted), but I'm realizing that the most important label is the one I give myself. I have an obsessive brain that ruminates on words and labels, and I'm going to waste my life if I don't start asserting myself over these thoughts. If it walks like a duck and quacks like a duck... then Occam's razor would say it's probably safe to assert it's a duck even though there are always other possible answers.

 

[Rodafina]

Welcome to the duck club.
Quack quack.

 

[chincey_james]

During my review today, my boss just said, "I fear you mask your feelings of stress." Apparently, I am not King of the Maskers after all. Maybe I'm not as deep or complicated as I thought. Maybe I'm just autistic. Thanks again, internet strangers, for saving my health savings account from taking a huge hit.