What made you first wonder if you could be Autistic?

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skibum
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16 Dec 2022, 2:47 pm

AquaineBay wrote:
When I was 4 and couldn't speak. I was diagnosed with Autism at that time. Autism itself is not something you "wonder" about, it's something you either have or you don't. Second Autism is a disorder not a personality trait. I think the science folks screwed up when they changed the DSM to lump all autism disorders into the same category. The functioning levels makes no sense and now we have a bunch of people questioning whether they are on the spectrum or not. You can have traits of autism that are so close that people would question or tell you that you are autistic but, that doesn't mean you HAVE autism.

My mother is an example. She has many traits that are similar to autism, I questioned it, her therapist did, and even she did, the reason why she says she is not is because even though she has those traits they were not significant enough to warrant getting the diagnoses and as I said Autism is a disorder not a personality trait. Also, other people determine whether you have Autism not you. You can wish it, want it, feel like you have it, it doesn't matter because it is not up to YOU to determine that, doctors, psychologists, psychiatrists(to a degree), and therapists decide whether it is appropriate to warrant giving you the "Autism" label or not. Self-assessments have proven to be one of the worse ways to determine a disability which is why anytime you type in "Do I have autism?" in Google or read books, many times they tell you that the information can help but, see a professional to assess whether you have it or not. Even in those "online tests" that people refer to a lot on here they even tell you that this test is in no way a determining factor of autism and that you should seek a professional to properly be assessed.


I think you are confusing some issues here. Wondering whether you are Autistic or not can be extremely valid. Many people don't have the luxury of being able to get a diagnosis at 4 years old. I was not able to get diagnosed until I was 47. Someone in my position would have every right to wonder if s/he were Autistic. We know our life experience and we are not stupid people. Wondering if you are Autistic would be a very natural thing for someone who has Autistic traits and symptoms and who struggles on a daily basis. And many, if not most people who self diagnose their Autism are actually correct. I self diagnosed correctly before I was able to get a formal diagnosis. If a person is Autistic, chances are that if they end up self diagnosing, they will have done massive amounts of research and sometimes for many years. People don't self diagnose by taking one online test. For many Autistic people, a formal diagnosis is not possible because they might be able to afford it. An adult diagnosis can cost thousands of dollars and many insurances will not cover that. And not everyone lives in a place where an adult diagnosis is even possible to get. So if someone self diagnoses, you really should respect that they have probably done the research and that they understand their own struggles well enough to be able to put two and two together. You were diagnosed as a toddler. You never had to do any research to figure out why your life was the way it was. People who live for decades and struggle without an explanation will do an extensive amount of research to figure out why they struggle. So if someone has self diagnosed, give them the respect and the benefit of the doubt that they did not come to this conclusion lightly.

As far as the functioning levels in the DSM 5, I don't think you understand them. The severity levels are now based on support needs, not on how well you function. There is a difference. If you actually understand them, you will see that they make much more sense than the old way when we were just lumped into high functioning or low functioning.

And as far as having traits that are close to Autism, there is a thing called Broad Autism Phenotype. I am guessing that you are not familiar with that. BAP is often looked for in family members of Autistic people. Because Autism has a strong genetic component, it is common for family members of Autistic people to have some traits but not enough traits, or not be impaired enough by them, to merit an Autism diagnosis. Those people would be classified having BAP. If you are in that category, it would be very likely that you might wonder or question if you are actually Autistic.

Autism is not and has never been a personality disorder. It is neurological. No one thinks Autism is a personality disorder unless they are completely ignorant. And yes, online tests cannot replace an official diagnosis and they are tools used to help people determine if they should seek a diagnosis. That is what they say because that is what they are. But even when you get an official diagnosis, the self assessment portion of the diagnostic testing is a very important part of it. When you are a child, your parents provide the "self assessment" part of the testing. When you are an adult, you often have to provide it yourself. When I got my official diagnosis, I presented a six page single spaced document about my lived experience and why I thought that I was Autistic. That was the self assessment portion of my diagnosis. It was an invaluable help in determining that I was. I was also given many other tests, my diagnostic testing was nine hours long. But the self assessment portions of the tests, not only the document I provided, but other questionnaires that were part of the testing, played a huge part in my getting the diagnosis.

I don't know if I misunderstood what you were trying to say and if I did, forgive me and please correct me. But from what I did understand by what you wrote, I think you might be a little bit misinformed.


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kraftiekortie
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16 Dec 2022, 3:37 pm

People frequently doubt my autism.

Perhaps, my mother's use of ABA methods (though not ABA; it wasn't invented yet), sublimated some of my autistic symptoms. I don't know.

I was certainly a "classic autistic" when I was 4 years old, and certainly very Asperger's-like after I started speaking. This sort of thing happens more often than we think. Temple Grandin was like that, too.



AquaineBay
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16 Dec 2022, 4:46 pm

skibum wrote:
AquaineBay wrote:
When I was 4 and couldn't speak. I was diagnosed with Autism at that time. Autism itself is not something you "wonder" about, it's something you either have or you don't. Second Autism is a disorder not a personality trait. I think the science folks screwed up when they changed the DSM to lump all autism disorders into the same category. The functioning levels makes no sense and now we have a bunch of people questioning whether they are on the spectrum or not. You can have traits of autism that are so close that people would question or tell you that you are autistic but, that doesn't mean you HAVE autism.

My mother is an example. She has many traits that are similar to autism, I questioned it, her therapist did, and even she did, the reason why she says she is not is because even though she has those traits they were not significant enough to warrant getting the diagnoses and as I said Autism is a disorder not a personality trait. Also, other people determine whether you have Autism not you. You can wish it, want it, feel like you have it, it doesn't matter because it is not up to YOU to determine that, doctors, psychologists, psychiatrists(to a degree), and therapists decide whether it is appropriate to warrant giving you the "Autism" label or not. Self-assessments have proven to be one of the worse ways to determine a disability which is why anytime you type in "Do I have autism?" in Google or read books, many times they tell you that the information can help but, see a professional to assess whether you have it or not. Even in those "online tests" that people refer to a lot on here they even tell you that this test is in no way a determining factor of autism and that you should seek a professional to properly be assessed.


I think you are confusing some issues here. Wondering whether you are Autistic or not can be extremely valid. Many people don't have the luxury of being able to get a diagnosis at 4 years old. I was not able to get diagnosed until I was 47. Someone in my position would have every right to wonder if s/he were Autistic. We know our life experience and we are not stupid people. Wondering if you are Autistic would be a very natural thing for someone who has Autistic traits and symptoms and who struggles on a daily basis. And many, if not most people who self diagnose their Autism are actually correct. I self diagnosed correctly before I was able to get a formal diagnosis. If a person is Autistic, chances are that if they end up self diagnosing, they will have done massive amounts of research and sometimes for many years. People don't self diagnose by taking one online test. For many Autistic people, a formal diagnosis is not possible because they might be able to afford it. An adult diagnosis can cost thousands of dollars and many insurances will not cover that. And not everyone lives in a place where an adult diagnosis is even possible to get. So if someone self diagnoses, you really should respect that they have probably done the research and that they understand their own struggles well enough to be able to put two and two together. You were diagnosed as a toddler. You never had to do any research to figure out why your life was the way it was. People who live for decades and struggle without an explanation will do an extensive amount of research to figure out why they struggle. So if someone has self diagnosed, give them the respect and the benefit of the doubt that they did not come to this conclusion lightly.

As far as the functioning levels in the DSM 5, I don't think you understand them. The severity levels are now based on support needs, not on how well you function. There is a difference. If you actually understand them, you will see that they make much more sense than the old way when we were just lumped into high functioning or low functioning.

And as far as having traits that are close to Autism, there is a thing called Broad Autism Phenotype. I am guessing that you are not familiar with that. BAP is often looked for in family members of Autistic people. Because Autism has a strong genetic component, it is common for family members of Autistic people to have some traits but not enough traits, or not be impaired enough by them, to merit an Autism diagnosis. Those people would be classified having BAP. If you are in that category, it would be very likely that you might wonder or question if you are actually Autistic.

Autism is not and has never been a personality disorder. It is neurological. No one thinks Autism is a personality disorder unless they are completely ignorant. And yes, online tests cannot replace an official diagnosis and they are tools used to help people determine if they should seek a diagnosis. That is what they say because that is what they are. But even when you get an official diagnosis, the self assessment portion of the diagnostic testing is a very important part of it. When you are a child, your parents provide the "self assessment" part of the testing. When you are an adult, you often have to provide it yourself. When I got my official diagnosis, I presented a six page single spaced document about my lived experience and why I thought that I was Autistic. That was the self assessment portion of my diagnosis. It was an invaluable help in determining that I was. I was also given many other tests, my diagnostic testing was nine hours long. But the self assessment portions of the tests, not only the document I provided, but other questionnaires that were part of the testing, played a huge part in my getting the diagnosis.

I don't know if I misunderstood what you were trying to say and if I did, forgive me and please correct me. But from what I did understand by what you wrote, I think you might be a little bit misinformed.


viewtopic.php?t=409459
If people did their research as much as you claim they do, then why does this thread exist? If the new DSM-5 made much more sense then why does this thread exist?

I can tell you why, the DSM-5 doesn't make sense outside of one thing: the criteria needed to be on the spectrum in the first place. Also I said trait not disorder. People are treating Autism as if certain traits and behaviors just give you the label even though it doesn't. The fact that there is no place to get a diagnosis for adults where some people live hate to say it but, that's one of the things people have to put in the category of "Life Sucks". About the "support level", what determines the support level in the first place? How many doctors you visit? How much therapy you need? Even then, what one thinks is one level of support another might think entirely different. The problem is there is no logic in this, it is all based off of subjectivity and feelings. "I feel so therefore I am" More people are as you say "completely ignorant" than you think they are. It's the reason I put "Autism is a disorder not a personality trait" in my signature in the first place because I see this happen so often.

Broad Autism Phenotype is not an official diagnosis so I would have to put that in the category of "you don't have Autism". It literally just describes traits associated with autism and brings back full circle that it isn't a personality trait. if you are aloof, so? Rigid tendencies, so? Different responses to sensory input, so? fixating on specific interests, so? Like I have mentioned before on this forum unless you have significant problems with your social skills(and no that doesn't include stuff like getting bullied or just not having friends because people can experience these things for various reasons.) you probably do not have autism.

To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).


This is from the CDC itself. I can guarantee many don't fit A.1. through A.3. and might fit B.1. through B.4. but, it doesn't matter because without A, B usually doesn't matter. Some of the things on B and C don't even make sense because people in general either do that because of their personality or in cases of things like "masking" people do that everyday. So for many adults, unless you are struggling with getting a job, going to school, getting friends/relationships, functioning in everyday life, and these things are significant and daily I would say you are probably not on the Autism Spectrum. I argue so strongly because I have(and so has my mother) have seen people use Autism as a way to either shift blame for their life choices or use it as an excuse to be a complete "Donkey".


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16 Dec 2022, 5:17 pm

skibum's explanation is consistent with my understanding.

And the bit of DSM-5 that AquaineBay included confuses me. It does explain what I read in the Psychological Evaluation I received, which concluded I fit those criteria. I do fit those criteria. I can see how one's ability to live independently could be affected by how strong the specified traits were. However, I need more toleration than support.

And folk (like myself) who met the criteria previously associated with Asperger's would not have been eligible for a DSM diagnosis before 1994...the year I turned 40. Us older Aspies would've built our lives before 1994 with no diagnosis. And once you had successfully muddled through decades of life it is quite plausible you would never be evaluated.

The picture for older folk with Classic Autism could be quite different.


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