Question about outdated use of diagnosing Autism Spectrum Disorder, such as Pervasive Developmental Disorders, for example.

[Oz67]

Why do some people in the autistic community say that diagnosis of Asperger's Syndrome or other Pervasive Developmental Disorders are not used anymore? Some countries and even in some places in USA can still use the old DSM version or old version or ICD. So why?

 

[Suzanne]

I will never call myself "autistic" because the therapist who diagnosed me said: you do not have autism; you have Asperger's syndrome, but now called: ASD.

 

[Oz67]

I will never call myself "autistic" because the therapist who diagnosed me said: you do not have autism; you have Asperger's syndrome, but now called: ASD.

I agree

Although, it doesn't make sense to say it's not used anymore, when some places use old version of DSM or ICD.

 

[Crossbreed]

Why do some people in the autistic community say that diagnosis of Asperger's Syndrome or other Pervasive Developmental Disorders are not used anymore?

1. Because DSM-4 was the standard when they received their diagnosis.
2. It is often used colloquially today because they were more specifically defined than DSM-5's current ASD (unless you include severity levels: ASD1, ASD2 & ASD3).

https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[Hypnalis]

@Oz67

Another reason people use "Aspie" is that in the past, "Autistic" implied low intelligence, with probable communication issues that precluded normal conversation.

"Aspie" was "similar issues, but without the communication issues and much more likely to be normally intelligent".
DSM V's definitions remove some problems, but created some new ones, which "Aspie" resolves, so it won't go away soon (IMO it will take 10 to 20 years, maybe even more).

As far as I know "PDD-NOS" never made it into mainstream speech, and ASD1, -2, -3 are easier to remember, so PDD will die out.

 

[vergil96]

I will never call myself "autistic" because the therapist who diagnosed me said: you do not have autism; you have Asperger's syndrome, but now called: ASD.

I'm more on the oblivious side, but I share your feelings. It's just last year that I've heard of people without intellectual disability calling themselves autistic. I've heard my whole life before that people who can't live reasonably independently, can't speak, can't work even with accomodations have autism and those who would be referred to as neurodiverse and can function in an average manner, even if they have their problems, at school, with relationships with others etc. have Asperger's syndrome. I don't think I will stop feeling like autism = intellectual disability overnight, even though I hear the all encompassing interpretation of the word "autism" in my social circles right now. It might change one day, but it might take a long time.

 

[Suzanne]

I'm more on the oblivious side, but I share your feelings. It's just last year that I've heard of people without intellectual disability calling themselves autistic. I've heard my whole life before that people who can't live reasonably independently, can't speak, can't work even with accomodations have autism and those who would be referred to as neurodiverse and can function in an average manner, even if they have their problems, at school, with relationships with others etc. have Asperger's syndrome. I don't think I will stop feeling like autism = intellectual disability overnight, even though I hear the all encompassing interpretation of the word "autism" in my social circles right now. It might change one day, but it might take a long time.

I have taken to saying: on the neurodiverse spectrum, because I have a new friend who has not got ASD or ADHD, but she is certainly not neurotypical.

 

[marc_101]

I agree

Although, it doesn't make sense to say it's not used anymore, when some places use old version of DSM or ICD.

Personal preference and changing norms. In the US, if you were diagnosed today, no clinical provider would use any other term than ASD because they follow the DSM-5-TR for payment from insurance. Asperger's is now ASD (1, 2, or 3) but mostly ASD-1, but not always (see below).

Asperger's is still part of the ICD-10 codes, though. I think that it's still in use in other countries. Some medical providers can tell people that they their traits qualify for ASD per DSM-5-TR but before it would be called Asperger's -- and funny enough, a medical coder could then slap the ICD-10 code for Asperger's in the medical record.

There is also some controversy around the change. Letting aside the life of Hans Asperger, the issue is that clinically what used to be called Asperger's is distinct from the presentation of many ASD cases, so does it make sense to combine such a broad spectrum into a single disorder? It affects research, too. The spectrum is too broad according to many researchers.

And then there is also the lack of clarity of the 1, 2, 3. The numbers are about the level of support needed, but support is not well defined. It has come to be used as "severity" of ASD, but that is not what the DSM-5-5 says.

I wonder what happens with the DSM-6.

 

[Oz67]

Personal preference and changing norms. In the US, if you were diagnosed today, no clinical provider would use any other term than ASD because they follow the DSM-5-TR for payment from insurance. Asperger's is now ASD (1, 2, or 3) but mostly ASD-1, but not always (see below).

Asperger's is still part of the ICD-10 codes, though. I think that it's still in use in other countries. Some medical providers can tell people that they their traits qualify for ASD per DSM-5-TR but before it would be called Asperger's -- and funny enough, a medical coder could then slap the ICD-10 code for Asperger's in the medical record.

There is also some controversy around the change. Letting aside the life of Hans Asperger, the issue is that clinically what used to be called Asperger's is distinct from the presentation of many ASD cases, so does it make sense to combine such a broad spectrum into a single disorder? It affects research, too. The spectrum is too broad according to many researchers.

And then there is also the lack of clarity of the 1, 2, 3. The numbers are about the level of support needed, but support is not well defined. It has come to be used as "severity" of ASD, but that is not what the DSM-5-5 says.

I wonder what happens with the DSM-6.

Thanks for educating me, I appreciate it

 

[Oz67]

Thank you for the education

 

[Ronald Zeeman]

Who cares about labels I am me period.

 

[jsilver256]

I'm more on the oblivious side, but I share your feelings. It's just last year that I've heard of people without intellectual disability calling themselves autistic. I've heard my whole life before that people who can't live reasonably independently, can't speak, can't work even with accomodations have autism and those who would be referred to as neurodiverse and can function in an average manner, even if they have their problems, at school, with relationships with others etc. have Asperger's syndrome. I don't think I will stop feeling like autism = intellectual disability overnight, even though I hear the all encompassing interpretation of the word "autism" in my social circles right now. It might change one day, but it might take a long time.

Everyone automatically assumes I am intellectually disabled because I am physically disabled. I used to be a bit wounded by it, but now I don't really care.

 

[Crossbreed]

And then there is also the lack of clarity of the 1, 2, 3. The numbers are about the level of support needed, but support is not well defined.

In the practical sense, requiring

• a representative payee,
• a legal guardian or
• neither

is a pretty good demarcation.

 

[marc_101]

In the practical sense, requiring

• a representative payee,
• a legal guardian or
• neither

is a pretty good demarcation.

Is that in your country? For a particular program? The the level of support could be tied to some programs, but it's not a clinical demarcation.

Does it make sense? The DSM does not specify the support. Government programs, insurers, etc do, though.

(Considerations like that were taken into account by the DSM writers. People with Asperger's didn't have the same services as those with autism. By putting them into ASD, they became eligible.)

 

[Crossbreed]

Is that in your country?

That is typical in the US.

For a particular program?

It is mostly a legal threshold.
3s like my daughter would be a danger to herself, and could not sustain herself if she were left to her own devices. (She does not comprehend the meaning of money.)
2s like my son do not meet that legal threshold, but Social Security will not pay him directly because money intended for room & board would go for video games & fetish purchases. (As it is [due to executive dysfunction], he still tends to misspend his food resources...

)

 

[honeytoast]

I wish that Asperger's Syndrome would be renamed instead of put into ASD.

I feel that I aligned more with that label than a broad diagnosis of autism. I act differently than someone who is ASD-1.

 

[Crossbreed]

I wish that Asperger's Syndrome would be renamed instead of put into ASD.

ASD1 is the real autism.
ASD2/3 is autism+ (or autism-, depending on how you frame it...).

The goal of medical science should be to eradicate severe co-morbids, not autism altogether. The latter is a difference, not a defect.

 

[Oz67]

You guys made some good points.

 

[Shamar]

Why do some people in the autistic community say that diagnosis of Asperger's Syndrome or other Pervasive Developmental Disorders are not used anymore? Some countries and even in some places in USA can still use the old DSM version or old version or ICD. So why?

I was diagnosed by a psychiatrist who did not agree with DSM5, and called me Asperger's and PDD-NOS. This was right about the time it came out, so he may have changed labels by now. He said it makes no sense to use a criteria meant for children to describe adults.

 

[Oz67]

I was diagnosed by a psychiatrist who did not agree with DSM5, and called me Asperger's and PDD-NOS. This was right about the time it came out, so he may have changed labels by now. He said it makes no sense to use a criteria meant for children to describe adults.

It's like if he is treating your Autism Spectrum Disorder as if it was a personality disorder, even though it's not a personality disorder.