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theboogieman
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04 Jun 2023, 3:23 pm

Howdy!

For the past 3+ months, I have consumed hours worth of information about ASD pretty much every day. I've read Devon Price's Unmasking Autism, Dave Plummer's Secrets of an Autistic Millionaire, and Steve Silberman's Neurotribes and found them all very interesting and relatable (especially Neurotribes). I was a "gifted" kid who later got diagnosed with ADHD-I around age 12, but I have thought that diagnosis was either wrong or incomplete soon after I received it. I ramble a bit about that in (this thread.)[https://wrongplanet.net/forums/viewtopic.php?t=390026]

Long story short, since I was in diapers I was fully working Windows 98, reading at age 3, had speech impediments and bad motor skills as a child (I was constantly drooling on myself), grew into a "gifted" kid who seemed distracted in class (leading to an ADHD-I diagnosis), but have always had a very difficult time communicating and participating in social situations where expectations weren't clearly defined or ones I didn't have a mental cache on how to handle things that may come up. I am friends with many people on the spectrum (as a software engineer and synth lover), and many of them have suggested I should get reevaluated for ASD.

I don't like to say I am "self-diagnosed" because I am constantly questioning my own bias. Even though I am textbook hyperfixated on learning everything I can about autism right now (my life is defined by months long hyperfixations), I don't trust my research and understanding of myself enough to say that I am autistic and my doctors have been wrong.

It's been nice participating in this community so far! I am excited to interact with more of you and learn how you feel about the current state of medical understanding on ASD, how this neurotype affects you, and most importantly, what your special interests are!

Peace and love,
theboogieman


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04 Jun 2023, 4:13 pm

Greetings


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04 Jun 2023, 5:07 pm

Welcome



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04 Jun 2023, 8:09 pm

theboogieman wrote:
I am excited to interact with more of you and learn how you feel about the current state of medical understanding on ASD, how this neurotype affects you, and most importantly, what your special interests are!


Welcome to Wrong Planet.

I have Asperger's Syndrome, Aspie for short.
I have thousands of special interest and am a subject matter expert in many of them. This is because I am very old. I am 74 years old but deep down inside me you will see a young boy. I even provided a photograph of me on the left.
I am a nuclear physicist and an engineer. I retired over ten years ago. But then I also did whatever I wanted to, such as building my own home to getting married to someone who did not even speak my language, raising a family.

So welcome to the site and enjoy your stay.


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04 Jun 2023, 10:27 pm

Welcome to WP!


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05 Jun 2023, 9:45 am

Welcome to WP! I hope you find it worth frequent visits.

I think I can sympathize with your hesitance to accept your self-diagnosis, even though it seems to make sense. That is where I was in 2019!

Before 2019 I knew virtually nothing about Autism and, in my ignorance, would've dismissed any suggestion that I was Autistic. (What did I know about Autism? I'd heard of the movie Rain Man but had never seen it. That's pretty much all I knew!) Then, in January 2019, some relatives gave me a snippet of information that caused me to read about Autism on the Internet...and it sounded like me! Then I asked my bride to research Autism and she reached the same conclusion, it sounded like me! I knew that it would take a formal Adult Autism Assessment to convince me I was definitely Autistic but I didn't want to do that based on the opinions of a couple of ill-informed amateurs.

Then I found and took the Autism-Spectrum Quotient Test (AQ). When it said I had significant Autistic traits things felt more real. And then I asked my bride to take the test on my behalf, answering the questions the way she thought I should answer them, and she got the same result: That I had significant Autistic traits.

That still was not a formal diagnosis but it persuaded me to seek one.

And then things got awkward. I started by checking whether my medical insurance would cover the assessment and learned they did. But the people answering their help line apparently knew nothing about what was involved in getting an Adult Autism Assessment! They wanted to help but gave me bad referrals and bad information. I figure Adult Autism Assessments must be uncommon enough that they had no experience with one. This confusion delayed things a number of months.

When I finally got correct information I was able to find a nearby psychologist who worked with Autism, took patients my age, and was willing to assess me. (In the confusion with the insurance company I ended up out-of-network so they only partially covered my assessment.)

And now I am officially: Autism Spectrum Disorder, Level 1 (Mild).

The diagnosis doesn't have much practical value for me but I am still glad I got it. It explained so many things in my life!

In your case, be forewarned that high-end ADHD and low-end Autism have some traits in common. That could complicate things.

And also note that it is possible to have some Autistic traits but not enough to justify the diagnosis.

It can be complicated.

Good luck!


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MatchboxVagabond
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05 Jun 2023, 12:16 pm

theboogieman wrote:
Howdy!

For the past 3+ months, I have consumed hours worth of information about ASD pretty much every day. I've read Devon Price's Unmasking Autism, Dave Plummer's Secrets of an Autistic Millionaire, and Steve Silberman's Neurotribes and found them all very interesting and relatable (especially Neurotribes). I was a "gifted" kid who later got diagnosed with ADHD-I around age 12, but I have thought that diagnosis was either wrong or incomplete soon after I received it. I ramble a bit about that in (this thread.)[https://wrongplanet.net/forums/viewtopic.php?t=390026]

Long story short, since I was in diapers I was fully working Windows 98, reading at age 3, had speech impediments and bad motor skills as a child (I was constantly drooling on myself), grew into a "gifted" kid who seemed distracted in class (leading to an ADHD-I diagnosis), but have always had a very difficult time communicating and participating in social situations where expectations weren't clearly defined or ones I didn't have a mental cache on how to handle things that may come up. I am friends with many people on the spectrum (as a software engineer and synth lover), and many of them have suggested I should get reevaluated for ASD.

I don't like to say I am "self-diagnosed" because I am constantly questioning my own bias. Even though I am textbook hyperfixated on learning everything I can about autism right now (my life is defined by months long hyperfixations), I don't trust my research and understanding of myself enough to say that I am autistic and my doctors have been wrong.

It's been nice participating in this community so far! I am excited to interact with more of you and learn how you feel about the current state of medical understanding on ASD, how this neurotype affects you, and most importantly, what your special interests are!

Peace and love,
theboogieman

This doesn't mean you are, but it definitely doesn't mean that you're not. The common screening tests online tend to be a bit on the high side in terms of score, so keep that in mind.

I'm mid-reealuation right now, I had my first session last week, and I'll be having the main one at the end of the month. One of the more interesting things is that in addition to submitting a ton of documentation, which honestly you can review yourself and still get a better idea about your life, I'm also going through what appears to be the DSM criteria and listing off pretty much all the trends that seem to apply to those particular things. Which is also likely useful if you're trying to make sense of your experience.

Ultimately, you can't go back in time to fix or address anything, but you can definitely reappraise things and come to a better understanding of the things you need to do in order to live a more meaningful and less stressful life. And to accept yourself more fully and understand when you've fallen short due to unfair expectations versus a failure to invest enough effort and care.

I think pretty much everybody that lived decades without knowing, or in many cases suspecting, that it's going to be a lot of rethinking of things and work to get to enough of the truth to move forward, but it's definitely worth it.



theboogieman
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05 Jun 2023, 3:50 pm

MatchboxVagabond wrote:
theboogieman wrote:
Howdy!

For the past 3+ months, I have consumed hours worth of information about ASD pretty much every day. I've read Devon Price's Unmasking Autism, Dave Plummer's Secrets of an Autistic Millionaire, and Steve Silberman's Neurotribes and found them all very interesting and relatable (especially Neurotribes). I was a "gifted" kid who later got diagnosed with ADHD-I around age 12, but I have thought that diagnosis was either wrong or incomplete soon after I received it. I ramble a bit about that in (this thread.)[https://wrongplanet.net/forums/viewtopic.php?t=390026]

Long story short, since I was in diapers I was fully working Windows 98, reading at age 3, had speech impediments and bad motor skills as a child (I was constantly drooling on myself), grew into a "gifted" kid who seemed distracted in class (leading to an ADHD-I diagnosis), but have always had a very difficult time communicating and participating in social situations where expectations weren't clearly defined or ones I didn't have a mental cache on how to handle things that may come up. I am friends with many people on the spectrum (as a software engineer and synth lover), and many of them have suggested I should get reevaluated for ASD.

I don't like to say I am "self-diagnosed" because I am constantly questioning my own bias. Even though I am textbook hyperfixated on learning everything I can about autism right now (my life is defined by months long hyperfixations), I don't trust my research and understanding of myself enough to say that I am autistic and my doctors have been wrong.

It's been nice participating in this community so far! I am excited to interact with more of you and learn how you feel about the current state of medical understanding on ASD, how this neurotype affects you, and most importantly, what your special interests are!

Peace and love,
theboogieman

This doesn't mean you are, but it definitely doesn't mean that you're not. The common screening tests online tend to be a bit on the high side in terms of score, so keep that in mind.


On every self-evaluation I've taken (AQ, Aspie Quiz, RAADS-R, CAT-Q) I have scored in the "very likely on the spectrum" side. When you say "on the high side", I'm not sure if you mean they tend to give more false-negatives or false-positives, regardless, my scores end up being pretty consistent. I also find myself taking them once every couple weeks because I'm constantly in self doubt, but maybe the fact that I do that reveals something :lol:

EDIT: Oh yeah, and good luck on your evaluation! Hoping you continue to learn about yourself both now and forever :)


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Last edited by theboogieman on 05 Jun 2023, 3:55 pm, edited 1 time in total.

theboogieman
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05 Jun 2023, 3:55 pm

Double Retired wrote:
Welcome to WP! I hope you find it worth frequent visits.

I think I can sympathize with your hesitance to accept your self-diagnosis, even though it seems to make sense. That is where I was in 2019!

Before 2019 I knew virtually nothing about Autism and, in my ignorance, would've dismissed any suggestion that I was Autistic. (What did I know about Autism? I'd heard of the movie Rain Man but had never seen it. That's pretty much all I knew!) Then, in January 2019, some relatives gave me a snippet of information that caused me to read about Autism on the Internet...and it sounded like me! Then I asked my bride to research Autism and she reached the same conclusion, it sounded like me! I knew that it would take a formal Adult Autism Assessment to convince me I was definitely Autistic but I didn't want to do that based on the opinions of a couple of ill-informed amateurs.

Then I found and took the Autism-Spectrum Quotient Test (AQ). When it said I had significant Autistic traits things felt more real. And then I asked my bride to take the test on my behalf, answering the questions the way she thought I should answer them, and she got the same result: That I had significant Autistic traits.

That still was not a formal diagnosis but it persuaded me to seek one.

And then things got awkward. I started by checking whether my medical insurance would cover the assessment and learned they did. But the people answering their help line apparently knew nothing about what was involved in getting an Adult Autism Assessment! They wanted to help but gave me bad referrals and bad information. I figure Adult Autism Assessments must be uncommon enough that they had no experience with one. This confusion delayed things a number of months.

When I finally got correct information I was able to find a nearby psychologist who worked with Autism, took patients my age, and was willing to assess me. (In the confusion with the insurance company I ended up out-of-network so they only partially covered my assessment.)

And now I am officially: Autism Spectrum Disorder, Level 1 (Mild).

The diagnosis doesn't have much practical value for me but I am still glad I got it. It explained so many things in my life!

In your case, be forewarned that high-end ADHD and low-end Autism have some traits in common. That could complicate things.

And also note that it is possible to have some Autistic traits but not enough to justify the diagnosis.

It can be complicated.

Good luck!


Reading this warmed my heart (the rainbow text was a nice touch.) I relate to everything you said besides doubting there is any possibility you could be on the spectrum initially. As far back as I remember, there was an Autism Speaks (sigh)/Ad Council sign near my house that said "Avoiding Eye Contact Is One Sign Of Autism" and I thought "Wait a minute, I do that." I was thinking this as a child, possibly under five years old. The idea I may be on the spectrum has been with me for a long time, but a long history of medical gaslighting has made me wildly confused about this.


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05 Jun 2023, 8:18 pm

Welcome to Wrong Planet! :)


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05 Jun 2023, 10:43 pm

theboogieman wrote:
MatchboxVagabond wrote:
theboogieman wrote:
Howdy!

For the past 3+ months, I have consumed hours worth of information about ASD pretty much every day. I've read Devon Price's Unmasking Autism, Dave Plummer's Secrets of an Autistic Millionaire, and Steve Silberman's Neurotribes and found them all very interesting and relatable (especially Neurotribes). I was a "gifted" kid who later got diagnosed with ADHD-I around age 12, but I have thought that diagnosis was either wrong or incomplete soon after I received it. I ramble a bit about that in (this thread.)[https://wrongplanet.net/forums/viewtopic.php?t=390026]

Long story short, since I was in diapers I was fully working Windows 98, reading at age 3, had speech impediments and bad motor skills as a child (I was constantly drooling on myself), grew into a "gifted" kid who seemed distracted in class (leading to an ADHD-I diagnosis), but have always had a very difficult time communicating and participating in social situations where expectations weren't clearly defined or ones I didn't have a mental cache on how to handle things that may come up. I am friends with many people on the spectrum (as a software engineer and synth lover), and many of them have suggested I should get reevaluated for ASD.

I don't like to say I am "self-diagnosed" because I am constantly questioning my own bias. Even though I am textbook hyperfixated on learning everything I can about autism right now (my life is defined by months long hyperfixations), I don't trust my research and understanding of myself enough to say that I am autistic and my doctors have been wrong.

It's been nice participating in this community so far! I am excited to interact with more of you and learn how you feel about the current state of medical understanding on ASD, how this neurotype affects you, and most importantly, what your special interests are!

Peace and love,
theboogieman

This doesn't mean you are, but it definitely doesn't mean that you're not. The common screening tests online tend to be a bit on the high side in terms of score, so keep that in mind.


On every self-evaluation I've taken (AQ, Aspie Quiz, RAADS-R, CAT-Q) I have scored in the "very likely on the spectrum" side. When you say "on the high side", I'm not sure if you mean they tend to give more false-negatives or false-positives, regardless, my scores end up being pretty consistent. I also find myself taking them once every couple weeks because I'm constantly in self doubt, but maybe the fact that I do that reveals something :lol:

EDIT: Oh yeah, and good luck on your evaluation! Hoping you continue to learn about yourself both now and forever :)

That's just what my evaluating psychologist said. That definitely doesn't mean that you aren't, just keep in mind that the score may be higher than what the actual results will be if you go through with a formal diagnosis. Which is probably not worth worrying about unless the scores are on the bubble.

But, even if it does turn out to be kind of borderline, that doesn't imply that it's not a significant challenge to deal with. Being slightly outside the borders doesn't really mean that things are necessarily that much easier than being slightly inside the borders.

The older you are, the harder it can be to accurately make assessments about neurodevelopmental conditions in general. In my case, I've definitely got ADHD and some sort of anxiety disorder which will make it a bit challenging.

It's also worth noting that you have be ASD, or it may be a combination of several other things that add up to something that might as well be ASD.



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28 Jun 2023, 6:03 pm

Healthy skepticism about your own thinking is a good thing, if not taken to the point of paralysis. I try to work with my best tentative conclusions, while remaining open to new ideas.

You mentioned synths. One of my past interests was MIDI equipment and making different sound textures. I used to be nuts for 1970s Klaus Schulze. I've never been a real musician, but loved experimenting.

I am also a software engineer. I have a lot of issues with social skills and so-called executive function.