Question about my diagnosis

[dancerxoxo123]

When I was around 3 years old I was diagnosed with PDD-NOS which means it is not enough for an official autism diagnosis. It means I have some traits of autism but not all. They changed my diagnosis to high functioning autism when I was in high school. Does that mean I have some autistic traits but not autistic since I was diagnosed with PDD-NOS as a child? Could my diagnosis of high functioning autism could have been wrong when they diagnosed me in high school?

 

[Judge]

When I was around 3 years old I was diagnosed with PDD-NOS which means it is not enough for an official autism diagnosis. It means I have some traits of autism but not all. They changed my diagnosis to high functioning autism when I was in high school. Does that mean I have some autistic traits but not autistic since I was diagnosed with PDD-NOS as a child? Could my diagnosis of high functioning autism could have been wrong when they diagnosed me in high school?

Welcome to the Autism Forums.

Looking at your age and timeline relative to the DSM-IV, could it be that you were re-diagnosed to later standards that have changed under the DSM-V?

Assuming your posted age of 27 is correct, it means your PDD-NOS diagnosis came under the auspices of the DSM-IV. Around the time you were presumably 17, the DSM-V dropped references to "Aspergers Syndrome" and replaced and revised it with "Autism Spectrum Disorder". I think it was May of 2013.

Perhaps not so much a "wrong" diagnosis, but one formally revised to reflect present diagnostic standards.

 

[dancerxoxo123]

Welcome to the Autism Forums.

Looking at your age and timeline relative to the DSM-IV, could it be that you were re-diagnosed to later standards that have changed under the DSM-V?

Assuming your posted age of 27 is correct, it means your PDD-NOS diagnosis came under the auspices of the DSM-IV. Around the time you were presumably 17, the DSM-V dropped references to "Aspergers Syndrome" and replaced and revised it with "Autism Spectrum Disorder". I think it was May of 2013.

Perhaps not so much a "wrong" diagnosis, but one formally revised to reflect present diagnostic standards.

Yes I was re diagnosed with high functioning autism. I don't think PDD-NOS exists anymore so now it is just high functioning autism right?

 

[Judge]

Yes I was re diagnosed with high functioning autism. I don't think PDD-NOS exists anymore so now it is just high functioning autism right?

"Autism Spectrum Disorder" Level one, two or three, per the DSM-V.

Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC

Learn about the standardized criteria used to help diagnose autism spectrum disorder (ASD).

www.cdc.gov

 

[Darkkin]

Autism is a wide spectrum of traits, not a linear scale of more autistic to less autistic. The labels are arbitrary because the DSM and the medical community are works in progress with their knowledge base. They've made huge strides in the last decade, but still have a ways to go.

What matters is that you know you are you. Autism is a neurotype, a different operating system than say the Windows based systems of the neurotypical 'normal' majority, you process information in Linux.

It sounds like your diagnosis was adjust to reflect the changes in the DSM, it doesn't make you more or less autistic. Your neurotype was present at birth. It just means that science and psychology are catching up with reality. There are a large number of late diagnosed autistics, many presenting with certain traits, but not enough to fit criteria when they were first diagnosed.

I was labelled ADHD only all the way through school. The actual diagnosis was called Asperger's at the time. (My mom and psychiatrist went with the lesser stigmata ADHD label to protect me. I found out in college. I wasn't mad because I understood why they did what they did.) In reality I'm ASD 1 (low support, high masking), ADHD.

Labels can help us understand ourselves, why we do certain things. They don't define who we are as individuals.

A good read on the ASD neurotype, especially among those with a late diagnosis is Divergent Mind by Nerenberg. From a historical and biographical standpoint Temple Grandin's The Autistic Brain is well worth a read, as well.

 

[Judge]

"High-functioning autism refers to autistic people whose living skills, including communication skills, enable them to live independently. However, the term is problematic, and it is not a clinical diagnosis."

High functioning autism: Symptoms, diagnosis, and treatment

High-functioning autism is a term that describes autistic people who have significant language or intellectual skills. It is not a clinical diagnosis. Learn more.

www.medicalnewstoday.com

 

[dancerxoxo123]

"High-functioning autism refers to autistic people whose living skills, including communication skills, enable them to live independently. However, the term is problematic, and it is not a clinical diagnosis."

High functioning autism: Symptoms, diagnosis, and treatment

High-functioning autism is a term that describes autistic people who have significant language or intellectual skills. It is not a clinical diagnosis. Learn more.

www.medicalnewstoday.com

How is it not a clinical diagnosis?

 

[Judge]

How is it not a clinical diagnosis?

That's why I quoted you a formal explanation of Autism Spectrum Disorder. The official terminology of the DSM-V.

However it doesn't stop individual medical professionals from using terminology that is less formal. Something that happens all across the globe. Doctors who choose to freelance the diagnostic process to varying degrees.

Not to mention how many people out there who may be diagnosed as such, yet prefer terms that sound a bit friendlier than being referred to as a "disorder". A consideration that some doctors may also take in explaining this to their patients. "High Functioning" certainly sounds better to me than "disorder". Though I know it isn't official, technically speaking.

 

[Progster]

I'm pretty sure there are plenty of people with PDD-NOS whose diagnosis was changed to ASD, or who meet the criteria for ASD under the DSM 5.

If you fulfill the critera for ASD in the DSM 5, you will receive and autism diagnosis, if not, then it might be Social Communication Disorder, or something else.

 

[autism-and-autotune]

When I was around 3 years old I was diagnosed with PDD-NOS which means it is not enough for an official autism diagnosis. It means I have some traits of autism but not all. They changed my diagnosis to high functioning autism when I was in high school. Does that mean I have some autistic traits but not autistic since I was diagnosed with PDD-NOS as a child? Could my diagnosis of high functioning autism could have been wrong when they diagnosed me in high school?

This is a very good question--I cannot answer it but I can relate to it; as a child I was diagnosed with NVLD. My autism diagnosis was nearly twenty years later; does this mean that I still have NVLD and autism, or was it just autism all along? I don't know.

 

[Judge]

This is a very good question--I cannot answer it but I can relate to it; as a child I was diagnosed with NVLD. My autism diagnosis was nearly twenty years later; does this mean that I still have NVLD and autism, or was it just autism all along? I don't know.

One thing worth considering is something many don't really want to hear. That such diagnostic processes are neither perfect or permanent. That they will likely continue to evolve with time.

That in as much as we want a binary explanation of what our condition is from a professional medical perspective, that they won't always have absolute or even accurate answers to who and what we are. With a watchful eye on the reality that such processes whether determined for better or worse are still almost exclusively under the control of Neurotypical professionals who continue to deal with everything about us through a secondhand perspective. That they not only don't have all the answers, but don't like to admit it, either.

But then the advancement of science and medicine has never been a perfect or linear process.

 

[autism-and-autotune]

One thing worth considering is something many don't really want to hear. That such diagnostic processes are neither perfect or permanent. That they will likely continue to evolve with time.

That in as much as we want a binary explanation of what our condition is from a professional medical perspective, that they won't always have absolute or even accurate answers to who and what we are. With a watchful eye on the reality that such processes whether determined for better or worse are still almost exclusively under the control of Neurotypical professionals who continue to deal with everything about us through a secondhand perspective. That they not only don't have all the answers, but don't like to admit it, either.

But then the advancement of science and medicine has never been a perfect or linear process.

Wise words; I agree with you! My own psychologist said that my diagnosis wasn't a 'perfect fit' which is something I can understand.

How come there aren't just...a bunch of neurodivergent folks taking charge, professionally, of diagnosing others? I feel this would also be beneficial.

 

[AspieChris]

Receiving any “new” diagnosis when you’re on the spectrum isn’t proof that you have changed. It’s only proof that one of your doctors got it wrong or that the criteria for one or all of your conditions has changed.

It’s like finding out you’re 1/16th Native American. Your ancestry didn’t change. You just understand it better.

 

[AspieChris]

It could also be that your life has become more hectic over time. When life is simple, it’s easier to mask your Autistic traits. Growing older generally means more responsibility and less ‘peace’. We each have a threshold, and crossing that line usually means that our quirks become more visible to others.