Diagnosed as Aspergers despite speech delay

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Of course I cannot say why my daughter didn't speak, but I was able to piece some things together after she became verbal.

Rocket123...my daughter did not babble. She did not do the "ma ma ma" "da da da" or "ga ga goo goo" thing that other babies did. She screeched. She squealed. She made noises that are best described as guttural or primitive. She always gave me the impression of someone who had no idea what the purpose of speech was.

When we first started doing traditional speech therapy, nothing much happened. It was only when we started doing Verbal Behavior therapy that she started making gains because it helped her understand the purpose of speech. She started speaking with intention on a regular basis around the age of 3, though she was still really far behind her peers. By the age of 5, she had advanced speech. She is now 9 and has a larger vocabulary than most of her peers and has pretty impressive writing/speaking skills. Her only notable speech deficits are pragmatic in nature.

At some point around the age of 4.5 or so maybe a little older, she was sitting on the toilet (really not relevant , but it is part of my memory) and I asked her a question. She didn't answer. So I asked her again. ANd again. And then she said "Miss Jen (her VB therapist/1:1 at school) told me that it is boring to other people to keep saying the same thing over and over again. Stop repeating yourself!" (She had VERY repetitive speech at this time and often communicated mainly with series of questions that she repeated over and over again, only in slightly different iterations. Kind of like "You like cookies? You like cookies because they are round? They are round because the baker made them that way? She made them that way because you like them? You like cookies? You like cookies because they are sweet? etc). I told her the reason I kept asking was because she wasn't answering. She said "But I was THINKING yes!" Which brings me back to my initial hypothesis: I don't think she understood the purpose of speaking. I think she thought I knew what she was thinking. In fact, for years, I had to remind her "If your mouth is not moving, I do not know what you are thinking."

Regarding how she got what she wanted: she screeched and squealed. She did not point. I had to hand-over-hand teach her how to point. She did not gesture. It was very difficult and it was mostly a matter of my ability to successfully anticipate what she would need and give it to her before she started squealing. Around the age of 2, she did learn a few signs and made up a few of her own, but mostly it was up to other people in her life to anticipate what she needed or guess when she started squealing.

Also it may be interesting to some to note that she started jargoning and babbling after she learned to speak. When she first started speaking with more intention and not with single words or short phrases, everything was in the form of a question. All of her sentences rose like a question. At some point she started speaking jibberish, but the jibberish had more normal prosody. Then she started using more normal prosody in her real speech. It was like she could not do both together at first. She could either get the words out, or get the right prosody. She had to practice making it "sound" right without having to also concentrate on using real words that constructed meaningful sentences. I would say her prosody today is pretty typical sounding.

As for HFA vs AS. At diagnosis (22 months) she was diagnosed in the moderate to severe range (Kanner). When she was entering the school-aged service level (5), they said she was HFA. Then she was changed to PDD-NOS (7), but her neurologist said he suspected that she would eventually present more AS. But the truth is, she doesn't present like anything typical. Not neuro-typical. Not ASD-typical. Not AS-typical.

Is she developing pragmatically as rapidly as she's developing in an intellectual sense?

Is this directed toward me? Intellectually she is advanced. Her pragmatic speech is probably not as delayed as her brother's (his is readily noticeable due to difficulties with figurative language). But I would comfortably say that her pragmatic language development lags behind her intellectual development.

I'm mostly answering this so I can keep track of it (haven't figured out how to "watch" a topic on the new WP format yet).

But since I'm answering... Generally I think "speech delay" is when the person doesn't say as many words as a typical person their age. "Speech impediment" is when they do, but it's unclear.

Both of mine are speech delayed. Neither babbled as babies and neither pointed. We've more or less taught my 12 year old to point now, and he also babbles now- he also now says some words (he tests with expressive language at a 24 month old level). My 15 year old has yet to babble or say a word or imitate or point or even pick a visual option. He will go and try to get whatever he wants himself and I can often guess what it is. If not, he screams, and behaves aggressively. My younger son does the same if the language is not there. He also uses PECS though which helps. I really do not believe it's due to not having anything to say. In fact, there's a quote I like that goes something like "Not being able to speak isn't the same as having nothing to say."

InThisTogether - Thanks for sharing this.

If the person is still around you could try and find them and ask them.

No evidence that this practice has changed. Autism seems just as much misunderstood as Aspergers was.

In the end even the anti DSM 5 clinician has to cave in if the want their clients to get insurance, benefits etc. But in truth most professionals unless they were adult autism specialists probably agreed to the changes or did not care.

The bigger mystery to me is why the community after fighting the loss of the Aspergers diagnosis so hard before it was passed, now mostly agree to it. Where was constantly talked about Autistic resistance to change when we needed it? We have accepted what most communities would never accept. People say I am New Yorker I am a Londoner and it is understood without question that they also American, British etc. There is no implication that you are not a loyal American or loyal to the crown. Here when I say I am Jewish, with the exception of die hard anti-semites there is no implication I don't identify as American. Gay at one time was considered a mental illness. We use the word Gay mostly because most gay people created an identity and insisted we call them that instead of fag or queer. Nowadays we use LBGT because that community insisted upon it. For most it is ok to identify as gay or lesbian without the implication they are not loyal or part of to the larger LBGT community.

But we Autistics accepted what all these other groups would never think of accepting. In another thread we talk about certain part of the parents of LFA not accepting us. Did the DSM 5 change that?. Only in the sense that instead of saying Aspergers is not real Autism thay can now say HFA in general is not real Autism.

You are probably right, this is a done deal I am probably going to have drop Aspergers in public even in WP soon. What they say is true, if you tell a lie enough times people will believe it. Asperger's is associated with 120+ IQ Sheldon types. I tried my best to prevent it, and failed utterly. No amount of my insisting otherwise is going to change being misunderstood if I continue to use the tarnished term. I have described myself with words that are only partial description of myself for 5 + decades, so I can do it again. I will learn to live with it as I must, accepting it (unless something better comes along), never going to happen.

Asperger's still exists within the ICD-10. There's an ICD-11, too. It's probably included there, too.

I always found this “general guideline” to be quite fascinating. As, on the WAIS-IV, my visual scores were higher than my verbal scores.

The clinical psychologist who diagnosed me, told me that “people with Asperger's tend to not be highly visual”. She then went on to diagnose me with Asperger's. After all that, I just remember being somewhat confuzzled (a term I learned from my daughter).

The ICD-11 is following the DSM-5 and switching to ASD.

In the draft, there are further specs under the heading of ASD called:
ASD without disorder of intellectual development or impairment of language
ASD with disorder of intellectual development
ASD with impairment of language
ASD with both disorder and intellectual development and impairment of language

The ICD = 11 is in beta now but I fully expect them to follow the DSM lead as they usually do. I have read in the UK many clinicians are already diagnosing people with ASD in anticipation of the DSM 5.

To correct my history, when I was born and before I was 2 years old I was a Nuerotypical. Perfectly normal baby and toddler. Then when I was 2 years old, I regressed meaning I lost speech and social skills. So in addition to being a Kannerian, I also had some elements of Theodore heller's "dementia infantilis", being that Autistic Disorder with regression is similar to CDD. And I would be labeled "developmentally ret*d" by Jhon Langdon Down, the same guy who discovered Down's Syndrome (Trismony 21). Jhon langdon Down's description of "developmental retardation" would later be revealed for their actual reasons over half a century later by Leo Kanner.