Something bothering me- AS with a speech delay

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There has been something bothering me for quite a long time.

I went to hospital a few months ago to get an abcess lanced and my GP printed off some documents for me to hand over to the doctors at the hospital. It pretty much was an overview of my medical history. It mentions medications I was on and conditions I have/had. It mentioned how I was first diagnosed with "Childhood Autism" and it also mentioned my current diagnosis of "Aspergers Syndrome" and it made me think about the overlap between HFA and AS.

My diagnosis is Aspergers, but I did fit the criteria for classic autism at one point in my life. I did have a speech delay. Not a masssive delay (my mother says I spoke at around 3) and I continued to have speech problems. I did repeat phrases and didn't hold conversations (at an age when conversation would occur). When I did start to speak, it was all gibberish, but like I said, I did repeat stuff. Either the word "No" over and over or short phrases my cartoon character would say. When I got support from an autism support unit in my primary school, I made some leaps in my development and I evenutally spoke really well. I still stumbled over stuff I said (and still do) but I managed to be able to speak quite fluently and eloquently.

One of my friends had a bigger speech delay than I did and possibly more severe symptoms as he was thought to never be able to speak, get a job and so on. However, his diagnosis is now Aspergers and he has a job, is in Uni and is better able to deal with stress than I am.

Aspergers is usually a diagnosis given to people who have not had any speech delays, but I have read some criteria's where a delay is required for a diagnosis or a speech delay is not realy discussed (in other words, it wouldn't matter whether you had a delay or not). This makes the distinction between HFA and AS very confusing. Actually, it kind of makes the distinction between AS and Autism confusing.

This is one reason why I really do support the proposed changes to the DSM-V (where Autism is a continuous spectrum defined by severity rather than segregated into seperate conditions).

I know this may not matter in 2012, but I am curious about this. Is there anyone here who's diagnosis was changed to AS after previously having a diagnosis of classic autism? Please explain as best as you can as to why this diagnosis was changed. Do you feel that AS is an accurate description of your behaviour and how you think or do you feel that you lean more on the classic autism side?

Do you have PDD-NOS? Why do you have that diagnosis? Please explain as best as you can.

Thank you very much for your time. I am looking forward to your responses.

Some psychologists intentionally don't discuss speech delays and verbal ability in Asperger's Syndrome in order to make it seem like AS and HFA are the same disorder. A case in which there is a speech delay, but the person's verbal ability eventually improves to an age-appropriate AS level (overly formal, large vocabulary) then the person should be categorized as PDD-NOS.

There also is a trend towards diagnosis switching when an individual marginally improves in functioning. There are some cases where it might be truly warranted, but I've seen one particular case in which it should have never happened.

I once met a 47 year old man who was one of the first people to be diagnosed with Autistic Disorder in my province in the late 1960s. He was later re-diagnosed as AS in his early 40s. However, he did not act like a 47 year old with AS. He acted more like an eight year old with AS. He hung around the table for 15 minutes, waiting to show one person his pictures. He rambled on and on about his cats and his records, and he had a picture of himself on his hoodie. He is also prone to having large meltdowns when someone doesn't want to listen to him. Even the HFA people at the event didn't want to talk to him. He was really below the level of everyone else that was there.

Psychologists should take age into account when re-diagnosing. While it could be argued that the man in my story was functioning at an "AS level", it would only be true if you were following the DSM criteria without taking any mitigating factors into account (essentially, judging an adult as if they were a child under 10, which is whom the DSM is intended for)

It would be like asking if a 47 year old with a mental age of 8 is considered to be "normal". Using the same logic of psychologists who frequently re-diagnose people, you could argue that if a particular cognitive ability is "normal" for an eight year old, it should be normal for a 47 year old. If a 47 year old man behaves like an eight-year old with Asperger's, then he must have Asperger's.

OR, he could have a more severe form of autism and his original prognosis was a bit pessimistic.

Which is more likely?

</rant>

Hi I was diagnosed with autism too in my early childhood. My parents thought it was bull because I had hearing loss and then I had tubes put in. I did stop babbling over night while I was deaf however. Sometimes I wonder if I actually had it and my parents didn't want to admit it. I heard how parents will deny their child's autism and use their sickness as an excuse or their delay. They had a right to say it was bull because the doctors were saying I was autistic due to a speech delay but they were looking at other things too, my behavior. My mom said deaf kids and autistic kids share the same characteristics in behavior and they are also good with puzzles because they rely on sight, not hearing so they use their eyes more. Also the fact they touch everything and take things apart.

Then I lost the autism diagnoses and it was changed to autistic behavior and it was wrote as in my IEP I am not classically autistic but I have the behavior.

But here is the thing, my mom told me she and dad always knew I had something besides my speech delay. Then at age 12 I was diagnosed with AS. I am sure I met the autistic criteria when I was little and then I outgrew it. I didn't meet the aspie criteria either because of my speech and developmental delay but I didn't lack the things lot of kids with autism typically lack. I probably had atypical autism. I've seen videos of me and I seem like a normal toddler except I didn't speak, I said single words and I had facial expressions and played with my parents. I even did some cleaning back then. My mom said I always loved to clean.

I seem to be all over the spectrum. I have read about AS and I read an article that they are more auditory and people with HFA are more visual, I am more visual. Lot of aspies have advanced vocabulary, I never did and in fact I struggle with new words usually and remember what they mean. That's why they call it a spectrum. I also scored below average on IQ tests and kids with AS score average or above average. Lot of aspie kids are little professors and actually take the time to learn about their topics, I didn't. I notice autistic kids seem to fixate on something and not learn about it. I didn't start reading about my obsessions until I was ten. Well they do call it a spectrum and it's not in the criteria that we have to be advanced in speech and be auditory learners and be little professors. If you look at each aspie criteria, they are all different. One of them mentions speech delay for AS.

I don't truely have AS but I was placed there because it was the closest match. My psychiatrist said I was between autism and AS and my mom says I do meet the aspie criteria but I don't see how I can meet it if I had a speech delay. Maybe they dropped it for me because of my hearing loss.

Some autistic kids do lose their autism diagnoses and have it changed to AS because they have improved that much. So I don't really care for what autism label I have. Changing it to PDD-NOS won't change a thing.

My therapist said my mom worked with me so now I meet the aspie criteria. My mom says I slip on and off it. I can talk to people depending on the topics and the people, sometimes I respond appropriately to things, I can have friends my own age if we have things in common but lot of the times I meet that part in the criteria. I have routines yeah but I don't know if they are abnormal and I am flexible and I deal with change well now. I don't always have motor mannerisms, it depends on the environment I'm in and I do have my obsessions and can get focused on them. I watch my movie everyday but I don't see that as a problem. I don't watch it all day long. I don't have a cow if I can't watch it or haven't watched it yet. Same as if I have to be flexible. I also fiddle with objects in my hand but not always. I have no idea how often you need to have these things for it to positive to meet. It all depends on the environment I'm in. Plus I naturally act different around my family. I act more normal. But sometimes I can't hide my symptoms and there I am rocking. I usually keep my body stiff and I shake my body. One thing I show all the time around them is prefer to be by myself. I hang out with them and then I go off by myself. I can hang out in the same room with them on the computer. There is me being with them.

Last edited by Spokane_Girl on 27 Dec 2009, 9:47 am, edited 1 time in total.

I just want to address some of my beliefs here with AS and HFA. When I was diagnosed with AS last year, I was told that I could be considered HFA, but futher analysis could be done to determine. But, I was told that it wasn't really necessary since this professional considered AS and HFA the same. The difference, HFA has a speech delay. Well, I talked at 8 months, but until I was well into elementary school I had speech issues that could be considered delays.

Now for my thoughts. There are numerous criteria that one must fit in order to get a diagnosis of AS or other autism spectrum difference. You don't have to fit them all, just enough under each category. I see AS and HFA as the same because I see the speech delay as just one of those things that could be placed under a category of criteria like special intense interests or sensory issues. One doesn't have to have these interests or sensory issues to get a diagnosis of AS. So, in my opinion, one doesn't have to have speech delays to have HFA---because I see AS and HFA as the same. I do realize how the DSM-IV is worded---this is just my belief based upon what I have learned about autism. And...it does sound like the AS label will be dropped and we with AS will be massed together with the rest of the spectrum (although now listed by severity).

Just curious, but for those of you who had speech delays, what was the situation that caused you to speak normally? I ask because my grand-nephew has a speech delay. He is 4 and speaks like a 2 year old. His words are incorrectly pronounced. Its almost like he is deaf, but he has been tested several times and his hearing is normal.

I was thinking something like a tape recorder so he can hear what he sounds like. Do you guys who actually had a speech delay think that would help? I have AS, but never a speech delay so I don't know what that is like.

I had speech therapy since I was 22 months and my mom also worked with me to speak. I started speaking sentences at age five and talking correctly at age six. I was four when I started to speak.

Your grand nephew could have auditory processing disorder or language processing disorder. I also used to leave endings off of words because I couldn't hear them. I needed speech therapy to hear those sounds. Also learning how to read also helped.

My current diagnosis is Asperger's Syndrome but I did not speak until I was four.

By the actual criteria, there is no situation under which you could ever have a diagnosis changed from legitimately diagnosed classic autism with a speech delay to legitimately diagnosed Asperger's. That is because Asperger's stipulates that there was no speech delay. I think quite a lot of psychologists are simply afraid of saying "autism"; so they keep away from diagnosing autism whenever they possibly can. I think that's part of the reason for the huge numbers of PDD-NOS cases.

You could, however, speak on time, have no developmental delay, and still be diagnosed Autism on the strength of one of these three characteristics--

This would be classic autism without a speech delay (that's right, it's not the same as Asperger's!). Many doctors will diagnose Asperger's in these cases as well, even when the correct diagnosis should be Autistic Disorder. This fact is why most cases of Asperger's should, technically, be diagnosed as Autistic Disorder, and why Asperger's is really not very meaningful as a category apart from classic autism.

The non-speech-delayed, non-developmentally-delayed, non-self-help-delayed Autistic Disorder case can be changed to Asperger's as the individual grows, but that is the only case in which such a change is legitimate. Note the "self-help delay" criterion--this is another reason why many people diagnosed Asperger's should not technically be Asperger's, but PDD-NOS or Autism; if, for example, you are late to learn to dress yourself, keep yourself clean, etc., you cannot be diagnosed Asperger's. If you also can't be diagnosed Autistic Disorder, then join the 60-some percent of the spectrum in PDD-NOS category.

So yeah, autism diagnosis is messed up.

I had a pretty big speech delay... but went from saying very very little to all of a sudden spitting out full sentences.

I still don't really know what the speech delay has to do with anything... they use it in the criteria, it's part of the criteria, but then some people seem to ignore that. I was diagnosed with AS, but had speech delay. I go by HFA due to that, because I guess I figure, why would it be in the criteria at all if it wasn't something that is supposed to be considered?

I'm sorry, but I discovered something and felt that I needed to make a few corrections:

1. Apparently, my delay wasn't as late as 3 (it was slightly earlier from my mother's recollection, but I don't really know, unfortunately). I don't know how large the delay was, but it probably wasn't substantial.
2. I was able to use sentences at that age, but I still repeated phrases or words and didn't really socialise (I was also very disruptive in my nursary- did a lot of screaming, apparently). I think 3 is the age when children start to speak fluently. I do remember being frustrated in mychildhood because I wasn't very good at verbally expressing myself but I don't know if that has anything to do with the speech delay or even AS (though I've always a visual learner more than a linguistic one, so I dunno..).
3. By school age, I think I spoke well, but of course the older I got, the more of stereotypical aspie I was (I read one of my IEP reports from when I was maybe 10 and it mentioned how I dominated conversation and monologued a lot, teehee).

Also, I not so sure how much I fit in the criteria for Classic Autism (if I did, I just barely fit it), but my mother suspects that the reason why I was diagnosed with Autistic Disorder and then AS was probably because it would allow me better access to services (and a saftey net incase they under/overestimated my cognitive abilities). Afterall, I could have better fitted the PDD-NOS criteria better, but I suppose that would have made services a little but difficult to access. I suppose it doesn't matter, because I have my AS diagnosis and it describes me pretty well. I don't really care if I'm described as HFA or AS because in my opinion, they are the same condition.

I know people (online and offline) who are very confused over their diagnosis because they are labeled as HFA purely because of their high IQ even though they are very low functioning in most other areas (or even the ability to speak somehow makes them high functioning). There was a woman on a blog who once described herself as an artistic savant with severe autism and then with AS and kept on changing what she was. I think that was because there was genuine confusion over her diagnosis and people seem to think that if you are classicly autistic, you must be mentally ret*d (which is not true at all).


Thank you very much for the responses- they are very informative and interesting.

I was diagnosed with PDD (no NOS because I don't think it was standard yet) but the doctor described it to my mom as a type of HFA, and said that on the official report, the serial number was the one for AS.

So yeah..

I think he called it PDD instead of something else because I don't rock or flap, I'm not very blank/monotone in voice and expression, and I didn't have a speech delay.
I was: immature, rigid, prone to zoning out and throwing tantrums in school, and I usually refused to stop drawing long enough to do schoolwork/homework or anything else I didn't want to do. (It was bad enough that I got sent to a special school.) I do have some sensory thingies, but they're not the usual AS over-stimulation ones. Some visual and verbal info just doesn't make it into my head, or gets scrambled.