update on my possible ASD toddler - I don't even know what to think...

[PeterPan]

Thank you Cricket.  That was very timely.

[Guest]

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[Crimson Wife]

Which Hanen program? The Early Start book I'm reading feels a bit too much. We don't have issue with turn-taking or the back-and-forth communication between child and mom...it just feels like he's 20-24 months, not 32 months.

 

The bolded to me suggests that it might just be language delay + maybe ADHD (from what you mentioned in an earlier post). It has taken YEARS of ABA plus speech therapy to get my DD (who turns 7 next month) to be able to hold a back-and-forth conversation.

[Guest]

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[Crimson Wife]

 

My youngest could also do back and forth communication from a young age but only in his areas of interest.

 

Trying to say this gently, but I don't personally consider a child as capable of holding a back-and-forth conversation if it is limited to his/her areas of interest. The child IMHO needs to be able to stay on topics of the other person's choosing without trying to steer it to a preferred topic. My DD is finally able to do this now whereas before she would always try to change the topic back to something SHE wanted to discuss.

[Guest]

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[PeterPan]

Aspergers is a profile, not a severity level.  We have severity levels in DSM5.  To some psychs, the profiles (HFA vs. Aspergers vs. classical, etc.) are very distinct.

[Guest]

Aspergers is a profile, not a severity level. We have severity levels in DSM5. To some psychs, the profiles (HFA vs. Aspergers vs. classical, etc.) are very distinct.

That wasn't my point though! From the DSM-IV for Asperger's:

 

"There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)"

 

My oldest could do back and forth communication using phrases and some sentences by age 3. The other characteristics though will still place him in Level 1, just like a child with more limited communication skills. But this language distinction has now been removed from the DSM-V. This is why I asked the developmental pediatrician to verbally confirm he was talking about Asperger's for my oldest. A child at the HFA level, or level 1 (maybe two as well, not sure) if you prefer, can REACH the language level of a previously identified Asperger's child WITH therapies at a later age. The child with Asperger's has that language level by 3 without therapies, as noted in the old DSM.

Edited December 24, 2015 by Guest

[Guest]

Link to old DSM:

 

http://www.autism-society.org/dsm-iv-diagnostic-classifications/

[Guest]

Note: We must not forget that it's all to the evaluator's discretion. More so now than with the DSM-IV. Some kids may meet the criteria based on one evaluator but not with another. Some may lose a diagnosis altogether. It doesn't change what IS. This makes for more girls going undiagnosed and suffering internally and never finding out why they are different. Just my two cents anyway!

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[Guest]

"Do Not Get Trapped By Labels" by Temple Grandin (autismdigest.com):

 

http://autismdigest.com/do-not-get-trapped-by-labels/

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[Crimson Wife]

A child at the HFA level, or level 1 (maybe two as well, not sure) if you prefer, can REACH the language level of a previously identified Asperger's child WITH therapies at a later age. The child with Asperger's has that language level by 3 without therapies, as noted in the old DSM.

 

This is what the developmental pediatrician who gave my DD her diagnosis of HFA said. The doctor said that HFA kids often present similarly to Asperger's when they are older and have overcome the language delay and that is what she expected of my DD with continued intervention.

[PeterPan]

This is sort of in the weeds, but the diagnosing psych for my ds, who diagnosed him under DSM5, considers him an aspergers profile.  I'm not sure that he's considered to have a language delay, and in fact, thanks to his ST, he's astonishingly verbal.  But his CELF scores are low, quite low, relative to IQ, and he has comprehension issues that affect both his interaction and reading.    So that's pretty in the weeds obviously with whatever that psych was seeing that made him feel he fit that profile.  I don't know.  He was of a mind to distinguish aspergers and HFA as presentation profiles, not severity levels.  I really don't know enough to be conversant on it.  For me, the whole thing is a sham once you admit there are hundreds of genes involved and at least 12 subtypes.  No grouping would be very adequate at that point, seems to me.  You'd be forever why do I fit most of the criteria but I differ here...  Because that's how the genes rolled.  So I just roll with the DSM5 thing of levels 1-3.  That seems to me more functionally useful.  

 

I don't know about the discretion thing, but maybe I'm seeing it really b&w.  We were diagnosed under DSM5 with a standardized tool.  Now the ADOS, that has a ton of discretion.  But the tool our diagnosing psych used was standardized.

[PeterPan]

I have no clue if it's accurate, but the psych told me he viewed the difference between aspergers and HFA like Steve Wozniak vs. Steve Jobs.  And what's weird is, if you look at pictures of Wozniak, he sort of *looks* like my ds.  He has that *look*.

[PeterPan]

Ok, I'll put this another way.  If the behavioral challenges of autism are considered due *largely* to communication, then I'm not sure it's logical to say aspergers profile has *no* language issues. Like I could be really in the weeds here with the way I'm thinking of language.  Ds had *communicative intent* but praxis holding him back.  As soon as he got PROMPT, the language started coming out.  There was no language *delay* in that sense, only praxis holding it back.  Now he has comprehension challenges that affect his reading and receptive and expressive language.  But I don't know enough to know how pervasive those comprehension issues are.  All I've been told is they're due to extreme EF issues, and of course extreme EF is correlated to and predictive of autism.

 

I think it's just that ds is complex.  That's really in the weeds when you say there wasn't a language delay but the praxis.  And then on the CELF scores, I don't know how those correlate to the various profiles.  Dunno.

[Guest]

This is what the developmental pediatrician who gave my DD her diagnosis of HFA said. The doctor said that HFA kids often present similarly to Asperger's when they are older and have overcome the language delay and that is what she expected of my DD with continued intervention.

I was told the same about my youngest, in comparison to my oldest. He said nothing is certain with autism but that he felt that most likely he would reach that level. He described both as clearly highly intelligent. These were his words. He also called my oldest at the very top of the spectrum, which to me meant that it could very easily swing either way for him. He has no visible stims, never has. He did things like line up his cars though when he was young and had some transition and flexibility issues. Having two, I can see clearly how differently autism can present from one person to another.

[Guest]

Ok, I'll put this another way. If the behavioral challenges of autism are considered due *largely* to communication, then I'm not sure it's logical to say aspergers profile has *no* language issues.

 

I think you are getting a bit confused between the two DSMs. The 4th clearly stated no language issues for Asperger's. Actually, they are said to have sophisticated language abilities, which is how you can distinguish them.

 

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[Guest]

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[Guest]

I have no clue if it's accurate, but the psych told me he viewed the difference between aspergers and HFA like Steve Wozniak vs. Steve Jobs. And what's weird is, if you look at pictures of Wozniak, he sort of *looks* like my ds. He has that *look*.

Elizabeth, sorry to say this but I don't see how looks have anything to do with how autism presents. Correct me if I'm wrong but I don't recall either one of them being formally diagnosed anyway!

Edited December 24, 2015 by Guest

[Guest]

Adding this for anyone interested:

 

Autism and ADHD: The Complete Playbook for Social Challenges (additudemag.com)

http://www.additudemag.com/adhd/article/11488.html

[PeterPan]

Cricket, to take your example, my ds also had highly unusual verbal skills as soon as his language came in to allow it, with an unusually sophisticated vocabulary, etc., but his basic comprehension (of language structures, things like prepositions, etc.) was way, way low.  So in his case not either/or, but a mix.  I really never studied DSM4, since we were already to DSM5 for our diagnosis.  I know I was worried, since people made it sound like it was "harder" to get a diagnosis with DSM5.  I really think there could be a transition thing there in the ASD community, where it's just a really hard transition when you were given this label that now, POOF, no longer even exists.  I mean, think about it.  This label was their IDENTITY for years and years.  My ds is from that early round diagnosed under DSM5, and to me I NEVER say aspergers.  Never, ever, ever.  When I need to tell people, I say he has autism.  When people say wow, wouldn't have thought, I say it's level 1 and the more you're with him the more you'll see it.  So, if you're not *used* to DSM4, DSM5 actually really makes sense.  For me, it explains why the community can have things in common but not EVERYTHING in common, because there's this range of severity levels, because it is all lumped together.  But it's sort of a generation gap, a big shift.  I *thought* it would be a problem, but for us it actually works out really well.  I never ever say aspergers, because not only is autism more correct (now) but it actually communicates more clearly.  Outside people understand that it's a big umbrella with a range. It works for us.  

 

Are you saying your dc has no stims or repetitive *anything* at all?  I don't think you can get to ASD for DSM5 without repetitive *something*.  But I'm not sure it has to be motions.  Can be words, etc.  My ds has both motions and words.  

[PeterPan]

Cricket, there are studies correlating face features, especially eye spacing, to ASD.  There's also a funny thing about how his eyes focus if he's actually looking at the camera.  That's a big if, since usually he's not lol.  I'm just saying, when you get it, there's this weird thing with his eyes, and it's a common thing.  You put that together with the eye spacing, and it's just sort of informal, not fully researched out enough to be conclusive just yet.  Remember, the research is behind the reality here.  

[Guest]

It's finally snowing here so we are going out with the boys before it rains and turns it into slush. More when I have some time...

[PeterPan]

We went out riding in a friend's convertible today, if you can imagine.  That's some kind of December!   :lol:

[Guest]

OK, take three! Yes, I have lost two posts so far. Oyi!

 

Anyway, let me link this from Attwood's site because going back and forth between tabs is what is doing it.

 

http://www.tonyattwood.com.au/index.php/about-aspergers/what-is-aspergers

[Guest]

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[Guest]

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[PeterPan]

Or muddy the water with this Attwood article saying there's hardly any clinical difference.  http://www.tonyattwood.com.au/index.php/books-by-tony/resource-papers/69-is-there-a-difference-between-aspergers-syndrome-and-high-functioning-autism

 

Pretty much, after you read that it's clear *why* they had to go to calling everything autism in DSM5.  There's no legal protection when you split it into 13 names and have docs using different names for different kids at different times.  For coverage purposes, where this is a definition that the gov't, insurers, everyone has to get on board with, it's much tidier to have it be all autism with severity levels.  And for me, I'm comfortable with that.  With the places I read online now, nobody is using Aspergers terminology.  They've moved on. With so many subtypes, I really don't think it's even possible to say someone is/is not some category, because those categories are being blown up by the research.  

[PeterPan]

Cricket, it had been a while since I looked at the DSM5 criteria!  You're right, lining up is there as one of the options for restricted/repetitive.  And of course the insistence on sameness is there, so no matter what your ds has 2 of the 4 in that section.  My ds has all 4, and it hadn't occurred to me that some might have some but not all, duh.  It's very interesting how these things present.  

 

Well, off to stuff stockings!

[Guest]

Cricket, there are studies correlating face features, especially eye spacing, to ASD. There's also a funny thing about how his eyes focus if he's actually looking at the camera. That's a big if, since usually he's not lol. I'm just saying, when you get it, there's this weird thing with his eyes, and it's a common thing. You put that together with the eye spacing, and it's just sort of informal, not fully researched out enough to be conclusive just yet. Remember, the research is behind the reality here.

Yes, there are studies trying to find possible genetic profiles and looking for physical common characteristics as well. That is still in its infancy though and I have not put too much stock to physical characteristics until there's something more concrete. I remember linking that study at some point.

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[Guest]

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[Guest]

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[Guest]

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[Crimson Wife]

Elizabeth, sorry to say this but I don't see how looks have anything to do with how autism presents. 

 

There was that study from a few years ago, however, that *DID* find a particular "look" more common in kids with ASD. I remember it because when I saw the photos in the study, it was striking how much the facial features did resemble my DD's. I actually emailed the lead researcher and included some photos of her but never heard anything back from him. https://spectrumnews.org/news/clinical-research-facial-features-can-help-diagnose-autism/

[Tiramisu]

I have a handful of pretty girls with different combos of broad foreheads, somewhat widely spaced eyes, cowlicks, and cross-bites. Haha. Or should I say, hohoho, Merry Xmas! :)

[Guest]

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[Crimson Wife]

I think it's interesting that my child with the ASD diagnosis has the "look" while my 2 kids who are just AD(H)D don't. Here's a link with photos from the study: http://www.cbsnews.com/pictures/is-it-autism-facial-features-that-show-disorder/3/

[Tiramisu]

Well, it's interesting that the kid I've been most concerned about also has more of the facial characteristics. 

 

The forehead and eyes seem rather common among people from where my dh's family is from. 

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[Guest]

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[Guest]

I found this comment with picture 10 rather interesting!

 

"This boy has autism, but Dr. Aldridge says that with the funny facial expression and angle at which this photo was taken, it's hard to tell that he has the distinguishing facial characteristics. This is evidence that while children with autism share similar facial features, they don't look drastically different from those without the disorder."

 

And this from the first link:

 

"Dysmorphic features may mark a subgroup of individuals who have autism with a distinct underlying genetic cause."

[geodob]

Though something that has been identified with Autism, is larger proportion of brain's White Matter.

While the Gray Matter, is the brain cells.

The White Matter is what is continually developing, to connect the Gray Matter brain cells.

 

Though a crucial side of this, is the continual 'Pruning' of redundant White Matter connections.

So that new learning, replaces earlier learning.

But with Autism, it has been identified that this 'Pruning' process isn't so effective.

So that as new connections are being formed, the old connections are being removed.

Where these 'old connections' take up space within the skull.

To cope with this, the skull needs to expand.

Though the upper skull, is formed by a set of 'plates'.

Which knit together, but can 'stretch apart'.

This has been identified with 'brain inflammation', where the plates stretch apart, to cope with the swollen brain.

Which can cause significant problems, when the swelling subsides. Leaving the plates displaced.

 

Though in regard to Autism and the 'prominent forehead'?

This is where the frontal cortex, is located.

Where this 'prominent forehead', provides more space for the frontal cortex to expand.

This raises a question about whether the prominent forehead, develops as a response to pressure from the expanding frontal cortex?

Or if it is formed in anticipation of a need for extra space?

[PeterPan]

Geodob, I had read about the decreased pruning in the brain and the larger heads, but I had not put the two together, interesting!  

[Guest]

I'm a "glass half full" not a "glass half empty" kind of person. I think that's what builds self-esteem in our children. My kids both know they are autistic. If we focus on the weaknesses, kids know. If we want them to emerge as confident, self-reliant individuals that will one day live independent lives, we need to build on that. That is where I place my time and efforts.

[geodob]

Cricket, I can foresee a time?

Where people look back in history, and are surprised to find?

That their 'Difference' used to be defined as a 'Disorder'?

 

In the same way, that 50 years ago?

Being 'left-handed' was classed as a Disorder.

 

[Guest]

No doubt geodob, but let's not forget that it took a handful of mothers to say, our kids can do better than the institutions the medical field felt was their only future. It took faith in their kids and determination to get them there. It took mothers that said, our kids are different, NOT less. It also took the Temple Grandins of the world, with Dr Grandin in the lead, to give the world the inside story. It took their strength and determination to fight for change. To show what they can do. To give autism a voice. I teach my kids that they can be strong, not in spite of their difference, but because of it.

[Tiramisu]

No doubt geodob, but let's not forget that it took a handful of mothers to say, our kids can do better than the institutions the medical field felt was their only future. It took faith in their kids and determination to get them there. It took mothers that said, our kids are different, NOT less. It also took the Temple Grandins of the world, with Dr Grandin in the lead, to give the world the inside story. It took their strength and determination to fight for change. To show what they can do. To give autism a voice. I teach my kids that they can be strong, not in spite of their difference, but because of it.

 

I've really enjoyed the Amethyst Schaber videos on youtube. Not only for the information, which is great, but for the positive message they give.

[Guest]

I've really enjoyed the Amethyst Schaber videos on youtube. Not only for the information, which is great, but for the positive message they give.

Tiramisu, I had never heard of Amethyst before, so I looked her up on You Tube. I clicked on this particular video because I was interested to hear what she had to say.

 

https://www.youtube.com/watch?v=EKE3PT2_ynU

 

I just want to say that there are many voices that speak for autism and they belong in different levels as I choose to see them. While I agree with quite a bit of what she has to say, my voice is quite different. I place my voice at the level of those, like Temple Grandin that, while feeling that autism is not a disorder to be cured, sti

Edited December 29, 2015 by Guest

[Guest]

Ooooops, above posted before I was ready! Let's try this again...

 

I place my voice at the level of those, like Temple Grandin that, while feeling that autism is not a disorder to be cured, still believe that autistic kids still need to be kept engaged to be in this world, and still need that "loving push" (as is so nicely put in her new book) to become the best that they can be.

[Tiramisu]

Ooooops, above posted before I was ready! Let's try this again...

 

I place my voice at the level of those, like Temple Grandin that, while feeling that autism is not a disorder to be cured, still believe that autistic kids still need to be kept engaged to be in this world, and still need that "loving push" (as is so nicely put in her new book) to become the best that they can be.

 

I agree.

 

I think it's good to hear the different voices and perspectives. I think the one thing we can't ignore is that we all have to find a way to get by in this world as best we can, and that speaks a lot for that "loving push."

[Guest]

I agree.

 

I think it's good to hear the different voices and perspectives. I think the one thing we can't ignore is that we all have to find a way to get by in this world as best we can, and that speaks a lot for that "loving push."

It is by weighing others' perspective against my own that I have become very clear about where I stand. Some people ask questions or have discussions. I prefer to read. It gives me time to reflect. It is through discussion and books that I am trying to help my boys find their own voice.