Developmental Delays and High Functioning Autsim/Aspergers

[vindexa]

It has been a while since I have posted here for several reasons: 1) I started a new job working 12 hours on night shift, 2) I went for an evaluation for an autism diagnosis in October and am confused and upset about how it went (which is the reason for this post), and 3) I moved recently and just now got internet at my house. Now that I have convenient internet again, I would love to get some feedback concerning autsim diagnosing. Prior to my evaluation, I sent in very extensive information including previous testing I had done (auditory testing, paperwork from an occupational therapist for a sensory integration disorder, learning disability/intelligence testing, etc.), a SPECT brain scan from the Amen Clinic, and some letters that past teachers and camp counselors had written to my parents about some social skills concerns. After speaking with me for an hour (this was the first time the therapists had ever met or spoken with me), I was told that they do not think that any further evaluations are necessary and that because I did not display any developmental delays when I was young (this was clearly stated in the information I sent in), that I do not have any form of autsim and that my original diagnosis of Nonverbal Learning Disorder (NLD) was accurate. To clarify, I asked, so I am essentially identical to someone with high functioning autsim except for the developmental delays experienced early in life? And yes, apparently that is they only reason they came to that conclusion. Then I asked that if it is NLD, then why is it that everything I read about it geared towards parents of small children and only discusses early childhood in reference to the disorder? They did not give me what I thought was an acceptable answer, just that it very recently became an official and recognized disorder.

So, what I am curious about from all my research versus what the therapists told me, is it not true that developmental delays is one of the major things that distinguishes the low functioning end of the spectrum with the high functioning end? I am fairly certain that everything I have read said that there MAY OR MAY NOT be developmental delays. Also, since when does a person have to display every single characteristic of a disorder/disability to be diagnosed? I have never heard of that. From what I have read, NLD descriptions are very vague and it seems to be less distressful to those who have it than autism spectrum disorders can be. I have never been able to have the types of relationships with people that everyone else seems to be able to. I have never been able to relate and fit in and so much of what I have read on high functioning austism/aspergers fits me 100%. Any thoughts? Has anyone else had a similar experience with trying to get a diagnosis? This has really been bugging me and I really would like some answers. As far as I know, NLD is not protected by law when it comes to employment and autism spectrum disorders are. There have been several times in the past where I feel like I was treated differently and singled out because of my differences and I am sick of it.

Thank you so much, I look forward to seeing what everyone has to say!

 

[Suzanne]

Partly why I will not get "professionally diagnosed. Could not cope with what you have been through, especially, when evidence screams out aspergers.

I am a late developer and so, according to "experts" I believe I would be deemed as not aspergic, because I am pretty sure that high functioning means normal development, but please do not quote me, for I am still learning.

The only benefit for me being official is how some extreme NT's who should know, would seem to only accept a professional diagnoses. I have now got to the point that these ones, can clearly see something is not right but are just ignoring and so, quite frankly, they will just have to stay in the dark!

My husband how believes me and some others, so that is good enough and I know that I am. Honestly do not need some idiot, who has names behind them, telling me.

 

[Maelstrom]

[QUOTE="vindexa, that I do not have any form of autsim and that my original diagnosis of Nonverbal Learning Disorder (NLD) was accurate. To clarify, I asked, so I am essentially identical to someone with high functioning autsim except for the developmental delays experienced early in life?[/QUOTE]

Hi Vindexa, I was just posting with wyverary, (a moderator), on NLD thing. The name Nonverbal Learning Disorder is confusing as it looks like a double negative. NLD is not being able to proses well or remember well VERBAL instructions from a teacher in class right? If this is the case than I have it quite heavily. I also have the Auti brain cloud thing I have almost gone deaf in stressfull crowd situations, everything slows way down, and it feels like like I'm swimming in honey. With my Aspie thing I'm not too bad but I still struggle with reading the emotional reactions in conversations and assigning the natural emotional connections the person may have to what we are discussing. I once mistook a bridesmaid for a bride at a wedding, ha ha! funny now, not so much then. I don't know if any of these symptoms sound like what you have, but it kind of sounds to me like you got pushed out the door, my test took a couple of hours and it was basic, I don't see how they could have done a good job so quickly.
I would like your comments on the NLD thing. Best wishes Mael

 

[Kari Suttle]

This is precisely why I'm iffy about whether i should go in for a diagnosis. I couldn't handle being told that when me and my immediate family are certain i have HFA. I'm not sure if, with the DSM-5, they require developmental disabilities (in one or all three areas) or not. I would have to look it up. My case would be iffy even then, though; I was born premature and spent the first half to 3/4 a year of my life in the hospital, so i was behind my same-age peers physically. I had to go to physical therapy apparently (what age idk i just know i was too young to remember and my parents had said it was because i was behind). Whether this was from being premature, or from legit physical developmental delays, i think only an expert can really say. As long as i'm sure and my family agrees with me and supports me, I'm content to learn how to deal with it on my own. That's actually why i stick with my current part time job as a cashier...its challenging in a good way.

 

[wyverary]

Hi Vindexa, I was just posting with wyverary, (a moderator), on NLD thing. The name Nonverbal Learning Disorder is confusing as it looks like a double negative. NLD is not being able to proses well or remember well VERBAL instructions from a teacher in class right?

This thread should prove useful - Aspergers and NVLD Are they the same? | AspiesCentral.com

 

[Kari Suttle]

This thread should prove useful - Aspergers and NVLD Are they the same? | AspiesCentral.com

I will open this to read later when i feel better and more up to it. Right now i feel like ****. But i do want to read more about NVLD...cause what the person you replied to said about verbal instructions, i'm like that. I also found out that not having a filter for background noise, in regard to hearing, has its own diagnosable disorder too that is ALL ME but i forgot what it was called...ooh wait i think auditory processing disorder. Wyverary, being a mod have you heard anything about it? Or is its legitimacy questionable? Yes i'm self-diagnosing myself with way too many things but someday i do plan to get seen about it all. When i have the money and am out of school.

 

[wyverary]

Wyverary, being a mod have you heard anything about it? Or is its legitimacy questionable? Yes i'm self-diagnosing myself with way too many things but someday i do plan to get seen about it all. When i have the money and am out of school.

I don't recall auditory processing disorder as being specifically associated with NLD...but then again, I'm still unsure what APD is (sorry, I forget a lot of things, lol). As to remembering verbal instructions, yes, I do have great difficulty with that, but that could be a number of issues: a side effect of Aspergers (though many Aspies do not have this problem), the particular medication I am taking (Lamictal, which can cause cognitive impairment), or if it's something that is IS specific to NLD.

 

[Kari Suttle]

I don't recall auditory processing disorder as being specifically associated with NLD...but then again, I'm still unsure what APD is (sorry, I forget a lot of things, lol). As to remembering verbal instructions, yes, I do have great difficulty with that, but that could be a number of issues: a side effect of Aspergers (though many Aspies do not have this problem), the particular medication I am taking (Lamictal, which can cause cognitive impairment), or if it's something that is IS specific to NLD.

Sorry, i meant APD as its own thing not specific to NLD. From what I've read, it sounds like being hypersensitive to sound is more related to the volume of sound and how it affects you whereas APD is about background noise - the brain has a filter which has a name that i forgot, but what its supposed to do is filter out non-important sounds like the dog barking next door or such. But with APD, that filter doesn't work and you literally hear everything whether you want to or not. Whether APD is its own thing or if its in connection to Sensory Processing Disorder idk - i know SPD is something aspies are commonly diagnosed with as well. I have to look into it, but its really interesting...I've actually taken a liking to developmental psychology, which specifically studies things like autism and ADHD...i'm debating in going into it, specializing in kids cause i like kids just not in a classroom setting.

 

[AsheSkyler]

So, what I am curious about from all my research versus what the therapists told me, is it not true that developmental delays is one of the major things that distinguishes the low functioning end of the spectrum with the high functioning end?

To the best of my understanding, the only real difference between Autism and Asperger's/High-Functioning is that autistics are much more likely to be non-verbal or have delayed speech, and aspergic people are more likely to talk early. (I was using sentences at 1.5 years old, and other Aspies here talked early too.) Not to say that aspergic folk will never be late talkers or that autistics will never be early talkers. Heck, some autistic people are linguistic masters and speak 12 languages fluently! And both tend to have varying levels of issues with anxiety, OCD, ADD, dyslexia, discalculia, dyspraxia social skills, sensory issues, and other stuff.

 

[Maelstrom]

"AsheSkyler, post: 189473, member: 11656"]To the best of my understanding, the only real difference between Autism and Asperger's/High-Functioning is that autistics are much more likely to be non-verbal or have delayed speech, and aspergic people are more likely to talk early. (I was using sentences at 1.5 years old, and other Aspies here talked early too.) Not to say that aspergic folk will never be late talkers or that autistics will never be early talkers. Heck, some autistic people are linguistic masters and speak 12 languages fluently! And both tend to have varying levels of issues with anxiety, OCD, ADD, dyslexia, discalculia, dyspraxia social skills, sensory issues, and other stuff.

Hi AsheSkyler, I'm not sure that is correct I have mentioned my brain cloud overload to aspies here and they had no clue what I was talking about. That is why I call my self a Auspie I see the face thing as being a separate thing, a auti overload can produce a failure for me to face read but I'm not sure it has any hand in face reading failures in low stress situations I see that as more aspergers in play. I am fairly certain on this, I do not agree with move to merge the two at all.

 

[Maelstrom]

I will open this to read later when i feel better and more up to it. Right now i feel like ****. But i do want to read more about NVLD...cause what the person you replied to said about verbal instructions, i'm like that. I also found out that not having a filter for background noise, in regard to hearing, has its own diagnosable disorder too that is ALL ME but i forgot what it was called...ooh wait i think auditory processing disorder. Wyverary, being a mod have you heard anything about it? Or is its legitimacy questionable? Yes i'm self-diagnosing myself with way too many things but someday i do plan to get seen about it all. When i have the money and am out of school.

Hi Kari Suttle, I hope you are doing well. I was a bit of a preme blue blood baby, and I have trouble with background noise too, I can hardly sleep without a fan going.

 

[Kari Suttle]

I am fairly certain on this, I do not agree with move to merge the two at all.

I AGREE. There was a distinct difference between HFA and AS before with the DSM-4, but now with the DSM-5 I do not see how they've addressed that difference. Unless there is a crucial fact I am missing, it honestly looks to me like people who deserve autism-level services (that would have been diagnosed with AS before the DSM update) are being missed just because they don't have developmental delays that an autism diagnosis typically requires.

I saw someone post about it just today or yesterday even, that they were given a diagnosis of Nonverbal Learning Disordeer just for that reason. Yet to me, NLD is so new that I'm skeptical - as much as i see some of it does fit me, i question this: (1) is it backed up by proper science and many years of reliable, reputable, easily replicated research studies, and (2) is it just a catch all category for those that don't fit into the diagnosis of autism...?

 

[Kari Suttle]

Hi Kari Suttle, I hope you are doing well. I was a bit of a preme blue blood baby, and I have trouble with background noise too, I can hardly sleep without a fan going.

Hi Mael! I'm doing better now. Not totally but somewhat, medicine and food helped. I"ll still have 'one of those days' though. Oh well. But yes, i can't sleep without a fan either! I try and 9/10 i can't. I need that constant, low noise. My background noise issues are helped by me being an aspie though...i can fix the issue at work by just hyperfocusing on my current customer. It stops working so well when i get tired or hungry though.

 

[Maelstrom]

"Kari Suttle, post: 189489, member: 2090"]I AGREE. There was a distinct difference between HFA and AS before with the DSM-4, but now with the DSM-5 I do not see how they've addressed that difference. Unless there is a crucial fact I am missing, it honestly looks to me like people who deserve autism-level services (that would have been diagnosed with AS before the DSM update) are being missed just because they don't have developmental delays that an autism diagnosis typically requires.

I saw someone post about it just today or yesterday even, that they were given a diagnosis of Nonverbal Learning Disordeer just for that reason. Yet to me, NLD is so new that I'm skeptical - as much as i see some of it does fit me, i question this: (1) is it backed up by proper science and many years of reliable, reputable, easily replicated research studies, and (2) is it just a catch all category for those that don't fit into the diagnosis of autism...?

Hi Kai Suttle, I think they are dumping two different face reading failures into the same pile, sloppy work if you ask me. And they can drop kick the developmental stuff in the nearest pond, what difference does it make how we got this stuff, we just need a little help on learning how to cope so we can survive and be happy. Personally I don't know what it means, but I can remember how worried my parents were that I was going backwards on everything at the age of 5or 6. Is that late onset? does it matter? so I learned to read late, so what, I ended up being better at it than most kids. Anyways I'm happy to hear you are doing better Kari, Best wishes to you on that Mael

 

[Maelstrom]

This thread should prove useful - Aspergers and NVLD Are they the same? | AspiesCentral.com

Hi wyverary thank you for the link, it's still a little confusing, I don't get the no empathy thing at all, on the NLD or NVLD, maybe I'm confusing 2 things? I know I miss stuff at times, so I may appear cold, but I feel bad for other people all the time, and try to make others happy if I can spot a way too. I'm beginning to feel like this whole thing is a bit like a big taco salad and everyone is fighting over weather the lettuse is really lettus and think that's why it doesn't taste right. When in reality the salad just didn't get mixed right before being served, and if you want to fix whats on your plate you need to count what you have on it too much tomatoes or to little lettus. Translation they are under counting the number of brain sectors involved.

 

[AsheSkyler]

Hi AsheSkyler, I'm not sure that is correct I have mentioned my brain cloud overload to aspies here and they had no clue what I was talking about. That is why I call my self a Auspie I see the face thing as being a separate thing, a auti overload can produce a failure for me to face read but I'm not sure it has any hand in face reading failures in low stress situations I see that as more aspergers in play. I am fairly certain on this, I do not agree with move to merge the two at all.

I'm sure there's more than just the speaking thing. I'm still new and digging, I'll probably find the other differences everybody finds important.

 

[wyverary]

Hi wyverary thank you for the link, it's still a little confusing, I don't get the no empathy thing at all, on the NLD or NVLD, maybe I'm confusing 2 things? I know I miss stuff at times, so I may appear cold, but I feel bad for other people all the time, and try to make others happy if I can spot a way too. I'm beginning to feel like this whole thing is a bit like a big taco salad and everyone is fighting over weather the lettuse is really lettus and think that's why it doesn't taste right. When in reality the salad just didn't get mixed right before being served, and if you want to fix whats on your plate you need to count what you have on it too much tomatoes or to little lettus. Translation they are under counting the number of brain sectors involved.

My personal and completely non-professional opinion is that they are trying to parse out individual traits which can vary wildly among individuals who do fit the criteria for Aspergers, perhaps unnecessarily so. The general consensus I've gotten is that it is a lot of hair-splitting and there still seems to be a big controversy as to whether or not the two conditions are "different enough" to be considered separate, individual diagnoses.

 

[royinpink]

It has been a while since I have posted here for several reasons: 1) I started a new job working 12 hours on night shift, 2) I went for an evaluation for an autism diagnosis in October and am confused and upset about how it went (which is the reason for this post), and 3) I moved recently and just now got internet at my house. Now that I have convenient internet again, I would love to get some feedback concerning autsim diagnosing. Prior to my evaluation, I sent in very extensive information including previous testing I had done (auditory testing, paperwork from an occupational therapist for a sensory integration disorder, learning disability/intelligence testing, etc.), a SPECT brain scan from the Amen Clinic, and some letters that past teachers and camp counselors had written to my parents about some social skills concerns. After speaking with me for an hour (this was the first time the therapists had ever met or spoken with me), I was told that they do not think that any further evaluations are necessary and that because I did not display any developmental delays when I was young (this was clearly stated in the information I sent in), that I do not have any form of autsim and that my original diagnosis of Nonverbal Learning Disorder (NLD) was accurate. To clarify, I asked, so I am essentially identical to someone with high functioning autsim except for the developmental delays experienced early in life? And yes, apparently that is they only reason they came to that conclusion. Then I asked that if it is NLD, then why is it that everything I read about it geared towards parents of small children and only discusses early childhood in reference to the disorder? They did not give me what I thought was an acceptable answer, just that it very recently became an official and recognized disorder.

So, what I am curious about from all my research versus what the therapists told me, is it not true that developmental delays is one of the major things that distinguishes the low functioning end of the spectrum with the high functioning end? I am fairly certain that everything I have read said that there MAY OR MAY NOT be developmental delays. Also, since when does a person have to display every single characteristic of a disorder/disability to be diagnosed? I have never heard of that. From what I have read, NLD descriptions are very vague and it seems to be less distressful to those who have it than autism spectrum disorders can be. I have never been able to have the types of relationships with people that everyone else seems to be able to. I have never been able to relate and fit in and so much of what I have read on high functioning austism/aspergers fits me 100%. Any thoughts? Has anyone else had a similar experience with trying to get a diagnosis? This has really been bugging me and I really would like some answers. As far as I know, NLD is not protected by law when it comes to employment and autism spectrum disorders are. There have been several times in the past where I feel like I was treated differently and singled out because of my differences and I am sick of it.

Thank you so much, I look forward to seeing what everyone has to say!

I'm so sorry for what you've been through. I think this process (being labeled!) is distressing for anyone but especially for us certainty-loving aspies. My initial diagnosis process was similar and I came out with Social Pragmatic Communication Disorder, which is so wrong. They had to interview my mom about my childhood behavior, and according to the interview, I actually met more cutoffs for restricted and repetitive interests and behavior than I did for social communication. She wouldn't believe I did anything that my mother didn't see (e.g. stimming, which she claimed was "just a nervous tic" and offered to go show me "real" stimming without even seeing what I do--which, for the record, is this) and didn't record anything I said in the report. They said that before, I might have been diagnosed with AS or, more likely, PDD-NOS and even though those both got folded into ASD to protect their existing access to treatment, I could not be considered ASD. God, there were just so many frustrating things.

Under the DSM-V, SCD is for people who meet the criteria for autism under 'social communication deficits' but not 'restricted and repetitive interests'. I pretty much agree with this article: Evidence weak for social communication disorder — And yes, according to pilot studies, there is good evidence to suggest that the new ASD definition reduces the number of diagnoses. I'm not sure if there's been a final word on that since? In theory, it's not supposed to reduce the number, but in practice...

Anyway, since then, I found a psychologist who has a lot more experience with Asperger's, and she was able to give me confirmation that I was right. It was SUCH a relief...I didn't expect it to be after all that time waiting, but it was. So my suggestion would be to find somebody who's experienced in dealing with adult women on the spectrum. I know that might be logistically difficult or expensive, but if you can, it is nice, and if not, just reassure yourself that you know yourself better than they ever will.

ETA: Tony Attwood gives a nice rundown of the DSM-5 criteria and his opinion of it here. I skipped to the part about DSM-5 but it's pretty uncontroversial until 45:00 when he moves to the second criterion.

 

[Maelstrom]

"royinpink, and didn't record anything I said in the report. They said that before, I might have been diagnosed with AS or, more likely, PDD-NOS and even though those both got folded into ASD to protect their existing access to treatment, I could not be considered ASD. God, there were just so many frustrating things.

Hi royinpink, yes they didn't do anything for me either, I had to badger the lady for 6 six months just to get a small dissablity letter for a job tax credit which is worthless for government jobs as they don't pay taxes, and half the county works for the government here. I'm guessing with the big budget crunch they are trying to shove anyone out the door they can, it is possible if you kept bothering them they may reverse their position, as getting caught denying service could look bad. I don't know what do you think on this royinpink?