I have a comment on everyone has ASD.

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FranzOren
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17 Jun 2021, 6:18 pm

Another big problem I want to point out is that I did a research that some people lose ASD diagnosis just because they no longer fit the diagnostic criteria for an ASD diagnosis. This is the fault of the "Spectrum", because Autism is a developmental disorder, it does not go away.

Either Autism, as a "Spectrum" disorder is proven to be too broad, or we need to make the symptoms of ASD much stricter so not too many people get diagnosed and lose their diagnosis later on and/ or if we want to make Autism more broad, we should include people who have Broad Autism Phenotype, they should be diagnosed with ASD-related disorders as well. And or the DSM-5 and ICD-11 should protect us from losing ASD diagnosis, by stating "Even if you no longer meet the diagnostic criteria for an ASD diagnosis later in life, you still have some kind of Pervasive Developmental Disorder, because all the symptoms of ASD was evident in your childhood and that is all you need and having developed social skills and reducing all traits of ASD later in life should not make you lose an ASD diagnosis."

What I meant to say is that even if you did so well and improved your symptoms of ASD to the point of ASD level 0, you still have ASD, because you had symptoms of ASD evident from your childhood and that is all that you need.



Last edited by FranzOren on 17 Jun 2021, 6:40 pm, edited 5 times in total.

FranzOren
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17 Jun 2021, 6:22 pm

naturalplastic wrote:
FranzOren wrote:
It makes sense, but the problem is that ASD can be so mild to the point where it will be very hard to differentiate ASD from normal human behaviors unless we do some kind of brain scan.

To me "Spectrum" goes from profound Intellectual Disability with complete lack of social skills to developmental disorders with high IQ and social skills. That is what I think about the "Spectrum" when it comes to ASD. It sounds very broad.


When they declared autism to be a spectrum-rather than just one thing- that was a giant step in the right direction. But its still an oversimplification.

And high IQ autistics dont necessarily have good social, nor good executive skills. There was a smart articulate young man who used to be a WP member who had trouble going to bathroom by himself. Still shocks me to try to imagine how "low functioning" he was in his offline life - only knowing him from his texts on this site. So the axis of the autism spectrum go in more than one line. If that makes any sense.



I get what you mean, I just made it sounds too broad, because there are some people who are well developed to have social skills, even though they have ASD.



FranzOren
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17 Jun 2021, 6:28 pm

I meant to point out how the problem "Spectrum" of Autism can be to the point either some people lose their ASD diagnosis or psychology failed us and that there is probably a lot of people that have ASD that is not diagnosed and were never studied.



Last edited by FranzOren on 17 Jun 2021, 6:52 pm, edited 4 times in total.

FranzOren
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17 Jun 2021, 6:31 pm

I am sorry, I think I understand what you mean. I made my own version of the "Spectrum" very generalized, but I hope you know what I meant about the issues with the "Spectrum" in general.



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17 Jun 2021, 7:19 pm

All of you are making good points. And, when it comes to "Spectrum" I am definitely a layperson--I studied and worked in computers, our spectrum was ZERO or ONE.


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FranzOren
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17 Jun 2021, 7:21 pm

Thank you!



cyberdad
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17 Jun 2021, 7:46 pm

FranzOren wrote:
I just have problems with the word "Spectrum" and how too broad and confusing it sounds to non-educational professionals.


The spectrum is actually mean't for teachers, health professionals and government departments to define/classify people diagnosed with ASD on a sliding scale based various criteria including and not restricted to IQ and functioning.

Where it's not useful is for people who actually have the diagnosis to try and pigeonhole themselves to either meet expectations or fall into some type of self-fulfilling prophecy. Many people diagnosed change for the better (or worse) and many have good days and bad days.

I also think most NTs have no clue what spectrum means. For the average NT they take an all or nothing approach where you either belong to a category or not.



FranzOren
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17 Jun 2021, 7:56 pm

Yes, but if NTs hear the word 'Spectrum" there is 99.99% chance that they will be confused and ask themselvs if they are really normal or just have ASD that is not diagnosed. I think the "Spectrum" should be made for only to ASD that is diagnosed or the DSM and ICD should use a different language and make sure that the symptoms of ASD are strict so too many people don't get diagnosed with ASD as I explained above. And or we make ASD even more broad as to include people who are well developed social skills, but have too much restricted interests or repetitive behaviors, as well sensory issues as well, but with social skills.

When I was in general ed classroom, I sometimes heard some students without a diagnosis of ASD getting confused and asking questions if they have ASD that is not diagnosed, because as I explained before, ASD goes from being very disabled to being in normal state of mind to the point were symptoms of ASD gets milder and milder that it is very hard to differentiate the very mild symptoms of ASD from NT traits and might not get diagnosed until you are much older or have ASD that was never diagnosed at all. That is what I worry about is that "Spectrum" is close to pie=3.14, close to infinity.



Last edited by FranzOren on 17 Jun 2021, 8:03 pm, edited 1 time in total.

cyberdad
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17 Jun 2021, 8:02 pm

FranzOren wrote:
Yes, but if NTs hear the word 'Spectrum" there is 99.99% chance that they will be confused and ask themselvs if they are really normal of just have ASD that is not diagnosed. I think the "Spectrum" should be made for only to ASD that is diagnosed or the DSM and ICD should use a different language and make sure that the symptoms of ASD are strict so too many people don't get diagnosed with ASD as I explained above. And or we make ASD even more broad as to include people who are well developed social skills, but have too much restricted interests or repetitive behaviors, as well sensory issues as well, but with social skills.

When I was in general ed classroom, I sometimes heard some students without a diagnosis of ASD getting confused and asking questions if they have ASD that is not diagnosed, because as I explained before, ASD goes from being very disabled to being in normal state of mind to the point were symptoms of ASD gets milder and milder that it is very hard to differentiate the very mild symptoms of ASD from NT traits and might not get diagnosed until you are much older or have ASD that was never diagnosed at all. That is what I worry about is that "Spectrum" is close to pie=3.14, close to infinity.


I think for NTs its easier to just tell them you have Aspergers. It saves a lot of complications and explanations if you say "I'm on the higher end of the autism spectrum" and additionally I have never liked the word "high" as it denotes some type of heirarchy.



FranzOren
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17 Jun 2021, 8:06 pm

The problem is that I never had a diagnosis of Asperger Syndrome, I only had a diagnosis of PDD-NOS until 2013. In 2013 I was considered to have ASD.

I am worried that I will feel like a fraud if I tell NTs that I have Asperger Syndrome, because I only have history of being diagnosed with PDD-NOS. It is only in 2013 my diagnosis of PDD-NOS changed to Autism Spectrum Disorder.

I hope you understand my confusion of suptypes of PDDs and why I prefer to say that I have ASD instead.



cyberdad
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17 Jun 2021, 8:25 pm

FranzOren wrote:
The problem is that I never had a diagnosis of Asperger Syndrome, I only had a diagnosis of PDD-NOS until 2013. In 2013 I was considered to have ASD.

I am worried that I will feel like a fraud if I tell NTs that I have Asperger Syndrome, because I only have history of being diagnosed with PDD-NOS. It is only in 2013 my diagnosis of PDD-NOS changed to Autism Spectrum Disorder.

I hope you understand my confusion of suptypes of PDDs and why I prefer to say that I have ASD instead.


Hmmm I see your dilemma. I guess you could just say you have a mild form of autism?



FranzOren
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17 Jun 2021, 9:06 pm

I am not sure what "dilemma" means from your point of view, but, yes, I prefer to say that I have milder form of Autism.

Another problem I wanted to point out is that most medical professionals rely on looking at the behaviors to diagnose ASD, but the problem is if you have milder form of Autism, most of your symptoms can disappear late in life, if improved with therapy. I hope we have much better technically in the future to diagnose people with ASD rather than on relying on behaviors alone. But if you have severe or profound form of Autism, then that would be a completely different story compare to people with milder traits of ASD regardless if it is diagnosed or not.



cyberdad
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17 Jun 2021, 11:43 pm

FranzOren wrote:
but the problem is if you have milder form of Autism, most of your symptoms can disappear late in life, if improved with therapy. I hope we have much better technically in the future to diagnose people with ASD rather than on relying on behaviors alone. But if you have severe or profound form of Autism, then that would be a completely different story compare to people with milder traits of ASD regardless if it is diagnosed or not.


Just pose a question, why would you want to disclose a diagnosis when you no longer have any problems?



FranzOren
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18 Jun 2021, 1:15 am

I actually do have milder problems with social skills, I just don't really realize until I read my medical and school records. But to say that I don't have problems at all feels wrong.



FranzOren
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18 Jun 2021, 1:17 am

I still need to meet my IEP goals when it comes to my lack of social-emotional reciprocity as well.



FranzOren
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18 Jun 2021, 1:30 am

I feel upset by what you said, because I had to work ten times harder to develop social skills, because of my history of developmental delay. I can disclose diagnosis of my ASD diagnosis if I wanted to.

I am sorry that I am upset, it's just I have been through a lot, because of my history of communication delays from my early childhood.