Misdiagnosis anyone?

[ROR]

Hi!

I am generally in doubt about my High-Functioning Autism.
One therapist said I have "Very very very high-functioning autism", something like that.
With that, I have some, what I believe to be, advanced intuitive visions about people...

 

[Kalinychta]

What makes you doubt your diagnosis?

 

[ROR]

I'm not sure right now as my mind is busy with other things. I will consider your question and respond if I find an answer

 

[Kalinychta]

Okay. A lot of doctors and therapists don’t know what they’re talking about when it comes to autism, by the way. Many of us here have stories of being told by a healthcare professional that we’re not autistic.

 

[Magna]

I've never heard of "very very very high-functioning autism".

 

[Neonatal RRT]

Unless you've been professionally tested and interviewed,...I might just pause on making judgments. As a healthcare professional, I can say with certainty that most healthcare workers and physicians wouldn't recognize an ASD-1/Asperger's variant unless they've lived with one. I have walked the halls of my hospital for 35 years,...even wearing my puzzle-piece ID lanyard,...nothing. I work at one of the largest children's hospitals in the US,...we see autistic children every day. Yet, at no point has anyone said, "Are you on the spectrum?" Exception: I had one of my co-workers point it out to me,...because she has a son with autism. My physicians over the years,...not once suggested it. Even when I gave him a copy of the report,...he was perplexed. Yet,...all my testing put me well into the moderate to severe ASD-1/Asperger's variant.

 

[Raggamuffin]

I'd suggest read more about the spectrum. See if things seem to make sense from the articles and books you read etc.

Ed

 

[Moon River]

Check this out!

 

[jleeb05]

I never brought up the fact that I had doubts but the clinician performing my assessment noted that I did not fit the stereotypical profile of a male Aspie and that I might, at various points in my life, find myself questioning whether I really have autism. She said that was okay and that the diagnosis was just a framework for understanding this specific cluster of traits.

I recently went to a support group with other people on the spectrum and felt that I was nothing like them. It was clear to me some of them were Aspies as soon as they started talking, some of them, even before they opened their mouths. On the other hand, most people would never guess that I had autism. How could we all be on the spectrum? But that's the thing, it is a spectrum. I assume that people who present in a certain way are more likely to be diagnosed. However, it seems that our understanding of what autism spectrum disorder looks like is changing and there are many of us who don't fit the stereotypical mold yet still fall within the spectrum.

Like the guy in the video above, I think a lot of it also has to do with masking, adaptability, and the blending in skills that some of us learn as we grow up. I've really started to notice that I mirror people a lot. Someone may make a joke that I didn't get or sometimes even hear but when I see their lips start to curl into a smile I do the same and may even chuckle. No matter how well I present, I can't deny that I still meet the diagnostic criteria for Autism Spectrum Disorder and that it still helps me understand my experience better than anything else out there.

 

[ROR]

Okay. A lot of doctors and therapists don’t know what they’re talking about when it comes to autism, by the way. Many of us here have stories of being told by a healthcare professional that we’re not autistic.

So it seems one diagnosis is not enough to determine certainly that one has Autism...

I've never heard of "very very very high-functioning autism".

I take that it was his way of saying "Even if you have Autism it's hard to feel it in your case"

Unless you've been professionally tested and interviewed,...I might just pause on making judgments. As a healthcare professional, I can say with certainty that most healthcare workers and physicians wouldn't recognize an ASD-1/Asperger's variant unless they've lived with one. I have walked the halls of my hospital for 35 years,...even wearing my puzzle-piece ID lanyard,...nothing. I work at one of the largest children's hospitals in the US,...we see autistic children every day. Yet, at no point has anyone said, "Are you on the spectrum?" Exception: I had one of my co-workers point it out to me,...because she has a son with autism. My physicians over the years,...not once suggested it. Even when I gave him a copy of the report,...he was perplexed. Yet,...all my testing put me well into the moderate to severe ASD-1/Asperger's variant.

I have a psychiatric diagnosis only

I'd suggest read more about the spectrum. See if things seem to make sense from the articles and books you read etc.

Ed

I'll give it a go!

Check this out!

I'll add this to my Watch Later playlist!

I never brought up the fact that I had doubts but the clinician performing my assessment noted that I did not fit the stereotypical profile of a male Aspie and that I might, at various points in my life, find myself questioning whether I really have autism. She said that was okay and that the diagnosis was just a framework for understanding this specific cluster of traits.

I recently went to a support group with other people on the spectrum and felt that I was nothing like them. It was clear to me some of them were Aspies as soon as they started talking, some of them, even before they opened their mouths. On the other hand, most people would never guess that I had autism. How could we all be on the spectrum? But that's the thing, it is a spectrum. I assume that people who present in a certain way are more likely to be diagnosed. However, it seems that our understanding of what autism spectrum disorder looks like is changing and there are many of us who don't fit the stereotypical mold yet still fall within the spectrum.

Like the guy in the video above, I think a lot of it also has to do with masking, adaptability, and the blending in skills that some of us learn as we grow up. I've really started to notice that I mirror people a lot. Someone may make a joke that I didn't get or sometimes even hear but when I see their lips start to curl into a smile I do the same and may even chuckle. No matter how well I present, I can't deny that I still meet the diagnostic criteria for Autism Spectrum Disorder and that it still helps me understand my experience better than anything else out there.

Thanks for your story!

I think it doesn't matter whether one has Autism or not. So long as social norms are met (or at least as much as possible), everything should be ok!

 

[Raggamuffin]

One my last therapist recommended was:

Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame by Gordon Gates

This is a book written by a therapist who is on the spectrum. I'm bad with finishing books. I start a lot and usually take years to finish them. I'll read a few pages at a time. That alone can have enough information to have me lost in a world of thought and new things to ponder for ages - then I forget to continue reading!

If I'm doing really well I might be able to get a chapter done in a day or two. But then they might sit half finished for a long time. Thankfully, with ebooks I can just pick up my phone, or go on my computer and pick up where I left off at any time. Kindle can even pair up with Audible (which does mean buying the book twice), but I find sometimes listening to an audiobook is less tiring than reading - at least for me.

Ed

 

[Captain Jigglypuff]

I was misdiagnosed with ADHD and OCD for years but I never more than one thing associated with each. With the ADHD it was because I could get pretty excited as a kid and had trouble focusing in class sometimes but that was mostly out of boredom and also not understanding what I was being taught and I’d get frustrated so I let my brain shut down and quit working because I was getting upset and didn’t know how to handle the situation as I was still a kid. With the OCD it was because I had different interests that seemed to be obsessions when they weren’t and I’d play video games for long periods but I usually had a goal in mind and would eventually stop playing once I achieved my goal. The only real OCD thing I have is having this need to keep lights off inside my home or other people’s homes if I know them well enough if it’s daytime and there is any type of sunlight. I’ve always hated seeing lights on when the sun is literally shining through a window. If it’s in a darker area with a very small or no windows then having the lights on won’t bother me. Other than that I wasn’t washing my hands constantly or organizing books in alphabetical order by subject and then by the author’s last name.

 

[Raggamuffin]

From what I've read, the co-morbidity rate for Autism and ADHD, OCD is actually very high. So it might not be a misdiagnosis at all.

Ed

 

[ROR]

Good news - I asked my current therapist whether he thinks I have Autism or not, and he approved!
What a relief...

 

[Raggamuffin]

Ed