My name is David, I think I may be on the spectrum

[717]

I wish there was a script for introduction, So I copy the introduction of 3 different people and edit to my situation:

J

Thread 'My name is Jess, I think I may be on the spectrum'

Sep 2, 2024

Hello everyone. I am here because a few people have suggested that I might possibly be autistic and I am here to learn more about autism. I am soon to be 30. I am trying to decide if it would be worth it to get an autism assessment done, because I would have to pay out of pocket for a portion of the test. Thank you, Jess.

• JessicaAnne1994
• Replies: 51
• Forum: Introduce Yourself

• 

Hello everyone. I am here because a few people have suggested that I might possibly be autistic and I am here to learn more about autism. I am soon to be 45. my doctor said an adult diagnosis for me is virtually impossible, unless I have a long documented medical history from my childhood, I don't have that. Thank you, David.

Thread 'A little about me'

Sep 24, 2024

Hi, all. It's a bit hard for me to write much, because I'm anxious like I haven't been for a while, and because I'm feeling shy, but I'll try.

It's been over a decade since discovering the possibility that I have autism of some kind. It's all mixed up with a lot of other issues, making understanding who I am intensely confusing. So far, I'm still only diagnosed with anxiety and depression.

I'm now in my mid-30s, wasting my life and hating it. In order to find treatment that would actually do something, I ended the relationship with my last therapist. I'm not on meds, but could probably...

• Cutesie
• Replies: 10
• Forum: Introduce Yourself

• 

Hi, all. It's a bit hard for me to write much.

It's been over a decade since discovering the possibility that I have autism of some kind. It's all mixed up with a lot of other issues, making understanding who I am intensely confusing.

I'm now in my mid-40s, wasting my life and hating it. I have not talked to a therapist since I was forced to do so in my high school, she said I was acting out because I was neglected and wanted attention.

No trying to get treatment, but would like tips on how to have a more adjusted, successful and comfortable life.

Let's say for now that my gender is male. I actually love to read, last time I try to join an online community for my eating disorder I was told I was faking it and I make them uncomfortable so I left after few days.

Thread 'Hello, I'm Neia, and I think I might be on the spectrum.'

Jun 29, 2024

I'm here because a friend advised me to join a forum so I can ask questions from people who can answer them from experience.

I only started thinking I may be autistic a little while ago. After I began researching anxiety and panic attacks because I was having huge meltdowns.

Youtube suggested some videos of people who were diagnosed with autism late in life, and I watched out of curiosity.
After the very first video I couldn't help but identify myself with this woman who was speaking about her life long suffering.
All I could think was "This is me!".

After some time, and a lot of...

• Neia
• Replies: 103
• Forum: Introduce Yourself

• 

I'm here because a youtube video mention that there is an awesome autistic community so I google it.

I only started thinking I may be autistic a long time ago. After I have being called this word by different people in different places and situations.

After some time, and a lot of inner struggle, I finally asked my doctor to refer me to a clinic so I can do the tests, he said no.
The ones I did online gave me results of... I don't remember the numbers but they all say it is very likely that I am in the spectrum. (English is my second language)

Sorry for the long ramble. Can't help it.

 

[FayetheAspie]

Welcome !

 

[Neonatal RRT]

@717 There are online tests that you can take that may give you some indication of where you might be "on the spectrum" or not. They, themselves, are not diagnostic, per se, but may give you some answers. I know in the US, it's much easier to obtain an appointment with a psychologist that deals with adult autism. I literally just went to the mental health hospital and made an appointment. I didn't have to see my doctor, at all. It was easy. It is more of a process and wait in other countries, from what I understand.

As a medical professional myself, I know that there are many people who seek answers from "Dr. Google" and self-diagnose, only to find out much later from an actual doctor, that their self-diagnosis was totally wrong. So, I do have a cognitive bias against a "self-diagnosis" in general, but on the other hand, I do understand the concept of "If it walks like a duck, quacks like a duck, has feathers like a duck, a bill like a duck, it's probably a duck."

If you are in the US (you said English is your second language), you weren't specific, but if you are, you only need to go online and seek out a psychologist that specializes in adult autism testing and diagnosis. What I also suggest is that you learn as much as you can from scientific journals as well as YouTube videos put out by autistics to get a better understanding of the condition. You can look autism up in the Diagnostic Statistical Manual (DSM) and see if anything describes you.

That said, as a primer, understand that autism is a prenatal, genetic and epigenetic, neurodevelopmental condition. The brain anatomy is different in terms of the migration and layering of nerve cells, it effects the nerve cell anatomy and distribution, and it starts very early in the womb. Unfortunately, these anatomical changes are at the microanatomical level and difficult to assess without specialized neuro-imaging studies. A good bit of information is also learned from post-mortem studies, as well. Currently, autism is diagnosed by mental health professionals like psychologists. In other words, they are assessing the symptoms and diagnosing from symptoms, and are not looking at the actual underlying causes, like the genetics and anatomy. This would require geneticists and neurologists, which, I hope, someday, that this is the case that we have enough information to do this with high degrees of accuracy, but not in 2024.

At any rate, welcome, and we have a great forum here for you.

 

[WhitewaterWoman]

Welcome. Many of us here figured out we were autistic without the benefit of professionals. It becomes pretty clear once you start looking into it.

Even though I had worked with developmental disabilities for over 20 years, it came as a shock to me as I read an article on high functioning professional women who were autistic. Fit like a glove.

I'm glad you're here.

 

[tree]

 

[Xinyta]

Glad to have you with us, @717

 

[Outdated]

my doctor said an adult diagnosis for me is virtually impossible, unless I have a long documented medical history from my childhood,

I have very poor experience with general practitioners, I find most of them to be unintelligent and poorly educated, I suspect many of them of going for a holiday in Indonesia where they can buy a medical degree cheap. Unless you're a middle age woman with a prescription medicine addiction they're not very helpful, all they can do is sign prescriptions.

Just three years ago a doctor read my diagnostic report and flipped it back in to my lap and said "There's no such thing as autism.". I'm ASD2.

I don't think a professional diagnosis is of much help unless you need it for a purpose, for me the diagnosis got me a pension and I don't have to work any more. Learning to better understand yourself is what will be most helpful to you, and there's enough people in this forum with a very wide range of presentations of autism that you should be able to find people with experiences similar to your own.

Welcome to the forum.

 

[717]

@717 There are online tests that you can take that may give you some indication of where you might be "on the spectrum" or not. They, themselves, are not diagnostic, per se, but may give you some answers. I know in the US, it's much easier to obtain an appointment with a psychologist that deals with adult autism. I literally just went to the mental health hospital and made an appointment. I didn't have to see my doctor, at all. It was easy. It is more of a process and wait in other countries, from what I understand.

I have done some online tests, they say I am on the spectrum. If you know of a test that is reliable... I can try it out and post result.

As a medical professional myself, I know that there are many people who seek answers from "Dr. Google" and self-diagnose, only to find out much later from an actual doctor, that their self-diagnosis was totally wrong. So, I do have a cognitive bias against a "self-diagnosis" in general, but on the other hand, I do understand the concept of "If it walks like a duck, quacks like a duck, has feathers like a duck, a bill like a duck, it's probably a duck."

I am also skeptical about online test... because the methodology... at least I am not self medicating for this.

If you are in the US (you said English is your second language), you weren't specific, but if you are, you only need to go online and seek out a psychologist that specializes in adult autism testing and diagnosis. What I also suggest is that you learn as much as you can from scientific journals as well as YouTube videos put out by autistics to get a better understanding of the condition. You can look autism up in the Diagnostic Statistical Manual (DSM) and see if anything describes you.

I am in the US. Yes I fit the criteria in the DSM.

That said, as a primer, understand that autism is a prenatal, genetic and epigenetic, neurodevelopmental condition. The brain anatomy is different in terms of the migration and layering of nerve cells, it effects the nerve cell anatomy and distribution, and it starts very early in the womb. Unfortunately, these anatomical changes are at the microanatomical level and difficult to assess without specialized neuro-imaging studies. A good bit of information is also learned from post-mortem studies, as well. Currently, autism is diagnosed by mental health professionals like psychologists. In other words, they are assessing the symptoms and diagnosing from symptoms, and are not looking at the actual underlying causes, like the genetics and anatomy. This would require geneticists and neurologists, which, I hope, someday, that this is the case that we have enough information to do this with high degrees of accuracy, but not in 2024.

At any rate, welcome, and we have a great forum here for you.

I did no knew it was genetic... can I just take a DNA test?

Thanks.

 

[Outdated]

I did no knew it was genetic... can I just take a DNA test?

That technology isn't quite there yet but it makes logical sense. I'm taking part in a research project early next year that is aiming to resolve that issue.

 

[717]

I have very poor experience with general practitioners, I find most of them to be unintelligent and poorly educated, I suspect many of them of going for a holiday in Indonesia where they can buy a medical degree cheap. Unless your a middle age woman with a prescription medicine addiction they're not very helpful, all they can do is sign prescriptions.

Just three years ago a doctor read my diagnostic report and flipped it back in to my lap and said "There's no such thing as autism.". I'm ASD2.

I don't think a professional diagnosis is of much help unless you need it for a purpose, for me the diagnosis got me a pension and I don't have to work any more. Learning to better understand yourself is what will be most helpful to you, and there's enough people in this forum with a very wide range of presentations of autism that you should be able to find people with experiences similar to your own.

Welcome to the forum.

To be honest, the reason why I want a diagnosis is because then I can explain... or blame on the condition, why I am the way I am...

I know I am not normal, I don't know why.

I have a job, I do things my way to be able to function, but without this, I would not be able to function... to give you an example... I learned how to tie my shoes at around 14 years old, this to say I can make a knot that cant be undone... all the shoes I own now are laceless, so they are either loaf like designs, or velcro... have not try zippers yet. Up to that age I would have to walk with undone laces or ask strangers for help... I had not idea this is actually common with autism... the same reason why my penmanship is trash... anyway now I do velcro, so I am back to functional... but no everything can be fixed that easy... some things require a lot more.

 

[Jumpinbare]

Just three years ago a doctor read my diagnostic report and flipped it back in to my lap and said "There's no such thing as autism.". I'm ASD2.

I briefly had to change doctors when mine switched to only seeing medicare patients, and I was months away from qualifying for Medicare .
The new doctor on going through my records, looked up and told me he didn't believe in Chronic Active EPSTEIN-BARRE Virus. My test results for the condition were very conclusive. There wasn't even room for doubt.
Apparently some doctors pick and choose what conditions they "believe in".

 

[AuroraBorealis]

Edit: Sorry for the early post, I posted it before being done with this answer.

I wish there was a script for introduction

I think that's actually a great idea. I love to write, so I might write one for future new members and post it somewhere.

my doctor said an adult diagnosis for me is virtually impossible, unless I have a long documented medical history from my childhood,

That depends on where you are, who does the diagnostics, and whether you have people who have known you when you were a child. The reason professionals want this is because part of the diagnostic criteria for Autism Spectrum Disorder (ASD) is that autistic characteristics were already present in childhood, before a certain age. If they only developed later in life, other reasons become more likely. If you have strong childhood memories, some professionals also rely on that.

To be honest, the reason why I want a diagnosis is because then I can explain... or blame on the condition, why I am the way I am...

I understand that, I really do. I'm sorry that you feel like you want to "blame" something on why you're the way you are.

My advice would be to inform yourself in depth about autism and neurodivergence, and think about it. Since you're an adult who mainly seeks answers for themselves, and are not mainly aiming for official recognition, state benefits, pension, etc. (or at least that's what I understood so far), I think that, for now, pinning down straight away whether YES, you are autistic, or NO, you're not, doesn't have to be crucial to your process of self-understanding. If after your research you conclude that you resonate with so much that you feel like an autistic person, then, in my opinion, it's absolutely worth to try some personal accommodations to make life easier for you. Even if you see a professional, since there's no blood test or similar for autism, even a professional's opinion ends up just being an opinion. It's (hopefully) a well-thought-out opinion based on clinical experience and the current state of research, yes, but nevertheless an opinion. Another expert somewhere else might think differently. So, for now, don't worry too much about YES or NO. Try to learn about autism and see how that resonates with you.

 

[Neonatal RRT]

I have done some online tests, they say I am on the spectrum. If you know of a test that is reliable... I can try it out and post result.

I did no knew it was genetic... can I just take a DNA test?

Thanks.

1. As far as "reliable" with regards to an online test, the "reliability" is only as good as your ability to interpret the questions correctly and one's cognitive biases. These tests are only as reliable as you are.

2. There are over 100 known genetic markers for autism, there are over 1000 epigenetic markers for autism, and over 1500 RNA markers for autism. However, just because you present with these markers, it does not mean you have "clinical" autism. You can carry the genes without actual presentation. If your wife also has these genes, then your children may be at a higher risk of actually having autism. There is no definitive "autism gene" per se. What we do know is that "genetic load" can vary between individuals and that females typically need a much higher genetic load than males to present with clinical autism. That said, if you were to have genetic testing done, I would seek out one of the few university-based autism research centers that do this sort of testing, like UCLA, Duke, etc. Your typical "23 and me" and "Dante" genetics tests are not going to target autism genes.

 

[Rodafina]

Hello and welcome @717. Hope you enjoy the forum and that you have the opportunity to learn a lot. I find seeking explanations generally more productive than seeking things to blame. The former leaves one more open to understanding and finding solutions and improvement through knowledge.

 

[717]

That depends on where you are, who does the diagnostics, and whether you have people who have known you when you were a child. The reason professionals want this is because part of the diagnostic criteria for Autism Spectrum Disorder (ASD) is that autistic characteristics were already present in childhood, before a certain age. If they only developed later in life, other reasons become more likely. If you have strong childhood memories, some professionals also rely on that.

I am in a small town in rural Texas.

I dont know who does the diagnostics. I talked to my insurance general doctor, and that is what he told me.

I dont think I can produce this kind of people, my childhood was in another country. I did bring the topic of autism to my mother and she look into it and said that she wished she knew about this before, because I really fit the description and she did no know so she was not able to help me with this... she passed few years ago, so she cant give testimony.

My advice would be to inform yourself in depth about autism and neurodivergence, and think about it. Since you're an adult who mainly seeks answers for themselves, and are not mainly aiming for official recognition, state benefits, pension, etc. (or at least that's what I understood so far), I think that, for now, pinning down straight away whether YES, you are autistic, or NO, you're not, doesn't have to be crucial to your process of self-understanding. If after your research you conclude that you resonate with so much that you feel like an autistic person, then, in my opinion, it's absolutely worth to try some personal accommodations to make life easier for you. Even if you see a professional, since there's no blood test or similar for autism, even a professional's opinion ends up just being an opinion. It's (hopefully) a well-thought-out opinion based on clinical experience and the current state of research, yes, but nevertheless an opinion. Another expert somewhere else might think differently. So, for now, don't worry too much about YES or NO. Try to learn about autism and see how that resonates with you.

Actually a profecional diagnosis will do me worse than help, from the practical point of view, that is... for example my current job say that they dont hire people with autism. There are some other things, like gun ownership... and so on...

But on the personal level, I would like to know if it is autism or something else.

 

[717]

1. As far as "reliable" with regards to an online test, the "reliability" is only as good as your ability to interpret the questions correctly and one's cognitive biases. These tests are only as reliable as you are.

I probably phrased it wrong... The few tests that I have done online seem to lean into autism being a personality type... let me give you examples:

This is my first google result for autism test:

Online Assessment for Adult Autism | Clinical Partners

"I prefer to do things on my own, rather than with others."
This question to me seems to indicate that autistic people is introvert and normal people is extrovert. If I was going to answer this honestly... it would be more complicated than the 4 giving options... what if I want to work with others but I cant?

"I prefer doing things the same way - for instance my morning routine or trip to the supermarket"
Then again personality types... are you boring or unpredictable?... There is value in habits and routines... I think everyone at some level do this things... I am no sure what is the point of this question...

"I find myself becoming strongly absorbed in something – even obsessional"
I guess normal people is not passionate about the things that they like?

This is 3 questions in a row and I think they are trying to define a personality test...

What I am trying to figure out goes deeper than a personality...

Anyway I finish the test on that link and my score goes like this:

Based on your results,

there's a strong probability that you are autistic

SCORE 25

• No tendencies
  (0 - 7)
• Few tendencies
  (8 - 12)
• Slight tendencies
  (13 - 15)
• Borderline indication
  (16 - 19)
• Strong likelihood
  (20 - 30)

Maybe I just hit all the right personality types?

 

[Neonatal RRT]

I probably phrased it wrong... The few tests that I have done online seem to lean into autism being a personality type... let me give you examples:

This is my first google result for autism test:

Online Assessment for Adult Autism | Clinical Partners

"I prefer to do things on my own, rather than with others."
This question to me seems to indicate that autistic people is introvert and normal people is extrovert. If I was going to answer this honestly... it would be more complicated than the 4 giving options... what if I want to work with others but I cant?

"I prefer doing things the same way - for instance my morning routine or trip to the supermarket"
Then again personality types... are you boring or unpredictable?... There is value in habits and routines... I think everyone at some level do this things... I am no sure what is the point of this question...

"I find myself becoming strongly absorbed in something – even obsessional"
I guess normal people is not passionate about the things that they like?

This is 3 questions in a row and I think they are trying to define a personality test...

What I am trying to figure out goes deeper than a personality...

Anyway I finish the test on that link and my score goes like this:

Based on your results,

there's a strong probability that you are autistic

SCORE 25

• No tendencies
  (0 - 7)
• Few tendencies
  (8 - 12)
• Slight tendencies
  (13 - 15)
• Borderline indication
  (16 - 19)
• Strong likelihood
  (20 - 30)

Maybe I just hit all the right personality types?

You're not far off in your assessment here. You are highlighting the limitations of an online test, and you're correct, it does follow the format of many personality tests.

If/when you are ready to make an appointment for a diagnosis, what I might suggest is to make your own personal "You might be autistic if,..." list. I found it helpful to create a Word file with an itemized list of all the little things that I observed, sensed, and felt that might be consistent with the diagnosis. Keep in mind though, in order to have a "condition" or "disorder", whatever symptoms you may have need to be pretty consistent. In other words, not every once in a while, but rather something you live with every day. You can add little experiences and thoughts you might have. Sensory issues. Social and communication difficulties you experience. After about 3 months of this, I had over 170 different things on my list. I brought 2 copies to my appointment, one for the psychologist to review, and the other for myself to refer to during my interview. Sometimes my mind blanks out during a stressful social situation, it was a nice tool for me to have to keep my thoughts straight.

 

[Richelle-H]

Hello and welcome. I was diagnosed with Asperger's in my early 40s without any curiosity or concern about my life at the time. A friend suggested that I might have the aforementioned syndrome and I was curious enough to schedule an appointment with a mental health professional (i.e. a psychiatrist), during an intense period of high anxiety (not the Mel Brooks Movie ). There was actually no sense of relief or a "so that's why" moment.

That said; about 3 years ago I joined Spark (sparkforautism.org). I was sent a genetic testing kit for free (3 times actually because I gather I did not get enough spit in the tube). They scan for specific genetic markers for autism that they are interested in, as well as some that forecast possible future illness (such as the combination of BRCA1 and BRCA2 in one's genome, if you request them to look for medical markers of concern.)

It took a couple of years for them to tell me that I had none of whatever markers they were looking for but they continue to test, apparently. I believe Spark is still accepting members, if that is something you might like to try. They also send out links to autism studies from which you have the chance to earn small amounts of compensation, when completed (I have participated a number of times and have received compensation on 4 separate occasions). They also have webinars and other content of interest for anyone who chooses to join.

May your journey of discovery bring surprises and rewards.

 

[717]

Hello and welcome. I was diagnosed with Asperger's in my early 40s without any curiosity or concern about my life at the time. A friend suggested that I might have the aforementioned syndrome and I was curious enough to schedule an appointment with a mental health professional (i.e. a psychiatrist), during an intense period of high anxiety (not the Mel Brooks Movie ). There was actually no sense of relief or a "so that's why" moment.

That said; about 3 years ago I joined Spark (sparkforautism.org). I was sent a genetic testing kit for free (3 times actually because I gather I did not get enough spit in the tube). They scan for specific genetic markers for autism that they are interested in, as well as some that forecast possible future illness (such as the combination of BRCA1 and BRCA2 in one's genome, if you request them to look for medical markers of concern.)

It took a couple of years for them to tell me that I had none of whatever markers they were looking for but they continue to test, apparently. I believe Spark is still accepting members, if that is something you might like to try. They also send out links to autism studies from which you have the chance to earn small amounts of compensation, when completed (I have participated a number of times and have received compensation on 4 separate occasions). They also have webinars and other content of interest for anyone who chooses to join.

May your journey of discovery bring surprises and rewards.

Hi, thanks for sharing.

Spark asked me 3 questions: 1. does my child have a diagnosis, 2. Do I have a diagnosis and, 3. was I invited by a family member?

The answer to the 3 questions was negative so it gave me this message:

"At this time you are not eligible to create a SPARK account, but there are lots of other ways to stay connected with our study!"

So at this time they are only taking people with professional diagnosis.

 

[717]

You're not far off in your assessment here. You are highlighting the limitations of an online test, and you're correct, it does follow the format of many personality tests.

If/when you are ready to make an appointment for a diagnosis, what I might suggest is to make your own personal "You might be autistic if,..." list. I found it helpful to create a Word file with an itemized list of all the little things that I observed, sensed, and felt that might be consistent with the diagnosis. Keep in mind though, in order to have a "condition" or "disorder", whatever symptoms you may have need to be pretty consistent. In other words, not every once in a while, but rather something you live with every day. You can add little experiences and thoughts you might have. Sensory issues. Social and communication difficulties you experience. After about 3 months of this, I had over 170 different things on my list. I brought 2 copies to my appointment, one for the psychologist to review, and the other for myself to refer to during my interview. Sometimes my mind blanks out during a stressful social situation, it was a nice tool for me to have to keep my thoughts straight.

That list thing sounds like a really good idea. I should start one. Thanks.