NEW UPDATE with dx..or not...: Differentiating Gifted OEs/intensity/sensory issues from Asperger’s syndrome: BTDT advice? - Mothering Forums

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Old 02-12-2011, 09:30 AM - Thread Starter
 
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x-posting in Gifted and Special needs – particularly asking from help from posters with 2E-children!

 

DS, 4, has been seen by a children’s psych for behavioural problems in preschool (pushing boundaries and aggression, being rejected by classmates because “he is always annoying us!”) and at home (rigidity, tantrums, sleep issues, sensory seeking behaviours again with pushing of boundaries, apparent inability to stop annoying and/or aggressive behaviour).

DS often appears to be unable to respond appropriately to social cues, mostly from peers, but also from parents (starting out gently “this is hurting me/your sister/your classmate. Please stop this” will end up in having to push/pull him away physically, sometimes even having to hurt him in the process to protect ourselves or others). He is often almost compulsively chatty, wriggly or goofy. But he can focus very well as long as an activity is adult-directed, only “losing it” at the transition. (The psych thinks he is very good at compensating, until exhausted).

 

The psych, after consulting with us for 2 hours, wants to test for Aspergers. The IQ test will be next week.The ADOS and ADIR will be in early March.

 

I have tried to find out what exactly latter two consist of, and they appear to be mostly a questionnaire for parents (I may have that wrong?). This worries me, as it is so highly subjective – does it mean a parent could talk their child “into” or “out of” a diagnosis? What are objective measures for a clinician to go on – particulary as the IQ testing may be unreliable too, he is just 4! I find alternative explanations for everything...

 

So he has interests which are probably unusual for a typically developing kid but which do not appear to me at all unusual for a gifted kid: he talked exitedly about the science DVDs he wants to watch, named the planets for her, explained how lightning happens. He likes technical toys, is interested in wires and trains, none of which appears obsessive to me. How can you tell whether a child that loves to lecture about stuff that fascinates him is gifted or has Asperger’s?

 

He prefers non-fiction to fiction – possibly because anything that is too intense can send him into a meltdown (a sad line in a book, a sad-sounding lullaby)? He loves some Lindgren books (Pippi Longstocking and Troublemaker Street). He can play pretend, easily with parents and older kids, fro a while even with peers, if somewhat structured (can play grocery store nicely for a while until he “loses it”, start sto annoy/poke/kick etc.)

 

He has flapped his hands, but rarely, when very excited, upset or bothered by sand on his hands. H has never lined up toys or insisted on a particular order of things (I wish!)

 

I also understand that auditory overresponsivity, tactile and proprioceptive sensory seeking and a general tendency to overstimulation are typical for Asperger’s – so how can you tell whether it is “just sensory” or “Asperger’s sensory”?

 

The problems with boundaries and body language, low co-ordination and muscle tone, aversion to swings and trampolines – Asperger’s or maybe slight hemispheric cerebral palsy from his premature birth and NICU stay? The rigidity and inflexibility, tantrums etc at home have been helped immensely by structures, schedules, attention and sensory play (life has been a little chaotic in fall with the new baby, of course). OEs and sensory?

 

Is there anything I ought to know before going into this testing? Or leave it to the experts at first...?


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Old 02-12-2011, 01:21 PM
 
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In terms of the evaluation: The psychologists will combine the information from the parental reports, teacher reports and their own observations in order to determine a diagnosis for the child. So, for example, a child who exhibits ADHD-like behavior at school, but never at home, should not be diagnosed with ADHD. Yes, it does require the parents to be honest on the questionnaires. But usually, the questionairres on a scale of something like "My child often does this, sometimes does this, rarely does this, never does this". And the questions cover everything from fidgiting to being able to wait to following directions to many things I've forgotten. They ask about specific behaviors rather than "do you think your child has ADHD". And there are a gazillion questions. So yes, you could probably give the answers you thought were 'best' (vs. true), but why?

 

I found that by having us (both dh and I filled out forms separately) and the teachers fill out forms, they got a pretty good picture. For example, the teachers noted that ds often spoke too softly and asked 'what' a lot, which indicated an issue with auditory processing. Once the teachers said it, I recognized that it was true but I wouldn't have flagged it because it was rarely an issue at home (there were just the 4 of us, and things are kind of quiet because I'm hypersensitive to sound!)

 

I've highlighted things below that would be 'red flags' for me. But I'm not knowledgable enough to know whether they're red flags for ADHD or Aspergers (or both). The only truely "Aspergerish" thing that I can see is the tendency to "lecture". Lecturing means that you're not gauging the other person's reaction to what you're saying. But then again, he's FOUR. Many 4 year olds don't.

 

I'll do another post with our experience being evaluated for a comparison for you, and to keep this one from getting too long!

 

 

Quote:
Originally Posted by Tigerle View Post

x-posting in Gifted and Special needs – particularly asking from help from posters with 2E-children!

 

DS, 4, has been seen by a children’s psych for behavioural problems in preschool (pushing boundaries and aggression, being rejected by classmates because “he is always annoying us!”) and at home (rigidity, tantrums, sleep issues, sensory seeking behaviours again with pushing of boundaries, apparent inability to stop annoying and/or aggressive behaviour).

DS often appears to be unable to respond appropriately to social cues, mostly from peers, but also from parents (starting out gently “this is hurting me/your sister/your classmate. Please stop this” will end up in having to push/pull him away physically, sometimes even having to hurt him in the process to protect ourselves or others).

 

He is often almost compulsively chatty, wriggly or goofy. But he can focus very well as long as an activity is adult-directed, only “losing it” at the transition. (The psych thinks he is very good at compensating, until exhausted).

<snip>

 

So he has interests which are probably unusual for a typically developing kid but which do not appear to me at all unusual for a gifted kid: he talked exitedly about the science DVDs he wants to watch, named the planets for her, explained how lightning happens. He likes technical toys, is interested in wires and trains, none of which appears obsessive to me. How can you tell whether a child that loves to lecture about stuff that fascinates him is gifted or has Asperger’s?

 

He prefers non-fiction to fiction – possibly because anything that is too intense can send him into a meltdown (a sad line in a book, a sad-sounding lullaby)? He loves some Lindgren books (Pippi Longstocking and Troublemaker Street). He can play pretend, easily with parents and older kids, fro a while even with peers, if somewhat structured (can play grocery store nicely for a while until he “loses it”, start sto annoy/poke/kick etc.)

 

He has flapped his hands, but rarely, when very excited, upset or bothered by sand on his hands. H has never lined up toys or insisted on a particular order of things (I wish!)

 

I also understand that auditory overresponsivity, tactile and proprioceptive sensory seeking and a general tendency to overstimulation are typical for Asperger’s – so how can you tell whether it is “just sensory” or “Asperger’s sensory”?

 

The problems with boundaries and body language, low co-ordination and muscle tone, aversion to swings and trampolines – Asperger’s or maybe slight hemispheric cerebral palsy from his premature birth and NICU stay? The rigidity and inflexibility, tantrums etc at home have been helped immensely by structures, schedules, attention and sensory play (life has been a little chaotic in fall with the new baby, of course). OEs and sensory?

 

Is there anything I ought to know before going into this testing? Or leave it to the experts at first...?




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Old 02-12-2011, 01:47 PM
 
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First a couple of disclaimers before I share our experiences:

Ds is moderately gifted and mildly 2E. Academically, for example, his CogAt scores put him at the 98-99th percentile for verbal, but not for math (85th there), and he's the kind of kid for whom in school differentiate works just fine. I have some sneaking suspicions that his math scores could be lower than they 'could' be because of some of his visual spatial issues. On one test (can't remember what it was), his score for concept understanding in math was in the gifted range and his computational scores were something like 65th percentile.

 

I say this simply because if your child is highly gifted or profoundly gifted, your experience with OEs and issues at school will be different.

 

Ds is also a sensory avoider and not a sensory seeker. When he's overwhelmed, he freezes. His 'fight or flight' mechanism is set 99.9% to 'flight'. If your child is a sensory seeker, who tends more toward 'fight', your experience will be different.

 

I've also got a child who's intense and definitely subject to OEs in a major way. She's the one who gets scared anytime cello music plays in a TV show. She had to come down and finish reading a Rainbow Magic book in the living room the other night because the 'bad' character "Jack Frost" was too scary for her. This was despite the fact that (a) she can read one of thes books in about 15 minutes and (b) she's read 95 of them before and knows the outcome because these books have the same plot in every bleeping book and (c) Jack Frost was pictured in bed wiht a teddy bear! She's actually much more inflexible than my 2E kid, and I think it is definitely a case of this being caused by her giftedness. But she doesn't have the sensory issues in the same way, she gets social cues very well and can transition. There's definite improvements as she gets older.

 

Our experience:

Ds has been tested for: SPD and dyspraxia (when he was 5) anxiety and Asperger's (at age 7). He definitely has SPD and some motor delays, but those have been hugely better after OT. He has mild anxiety, but that seems to have gotten a lot better with time (and no therapy). Just about the time I was ready to enroll him in therapy, he seemed to grow out if it. (He's like that with a fair number of things.) We've definitely ruled out Aspergers, although he has a few of the characteristics. He was mildly, but not grossly, delayed in terms of social cognition. I think I've posted elsewhere how at age 5, he couldn't really identify facial expressions. Something clicked fairly soon after that  and then he could. IMO I think it was the delayed frontal lobe development kicking in.

 

The things that might make him look like a child with Aspergers are: SPD, motor delays, mild tics/stims -- at 7 it was putting his hand in front of his eyes, at 8 it was twirling his hair and pulling it hard enough to cause bald patches (that's when I was about to sign him up for therapy!), and 9 it seems to be some sort of odd jaw clicking that he's doing. (No, it's not Tourette's because that requires a verbal tic too.) I think the tics are sensory related, and keep meaning to ask our old OT about it. He's not got great eye contact, but it's good enough. He's an introvert and a bit shy, so that might be it.

 

The things that have ruled him out of Aspergers are: social cognition, social language, and general flexibility. He's never really had trouble with transitions. Actually even as a 2-3 year old, the age at which transitions are really hard for most kids, he was incredibly easygoing about them.

 

Also, his social cognition is pretty good: Three examples

  • When we were in the psychologists office about his anxiety/possible Aspergers, the whole family was there. The psychologist asked him what made him scared. Before he answered, ds looked at his sister and said, "Is it OK if I mention this? I know it makes you scared too." That level of awareness of other people's emotions and that an idea might upset his sister is one of the reasons the psych gave for ruling out Aspergers.
  • Other indications for me is that even at age 4-5 he was pretty good at observing social relationships. When I asked him when he was turning 5 who he wanted to invited to his birthday party, he could tell me who in his preschool class played with whom, and thus which 'sets' of kids needed to be invited together. He's not great at developing friendships, but he responds appropriately to overtures from other kids.
  • Finally, when ds was in his major 'bus phase' (ages 6-8), his favorite thing to do was to walk down to the local transit center and watch the buses coming and going. We'd look at the schedules, find out which bus was going to leave next, and watch it until it left. He could do that for hours. (Talk about an odd interest!) However, when we were walking down to the transit center, we'd sometimes meet other kids in the neighborhood who wanted to know where we were going. Ds had enough social savvy not to say "We're going to to transit center to watch buses." He'd say "We're going for a walk."

 

FWIW, we have relatives who have been diagnosed with Aspergers. The biggest difference I see between them and our son is that our son is just more flexible. My nephew with Aspergers understands that people take turns in conversations, but he won't let any get a word in until he's completely done. So, it's not got the give and take that a typical conversation has. This rigidity goes over into a lot of areas of life - once they get an idea it's hard to change. Transitions are hard. Being wrong is hard and leads to a meltdown. They're also both sweet, lovable, interesting kids!


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Old 02-12-2011, 01:52 PM
 
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Hi Tigerle.  I'm feeling a lot of empathy for you right now, as I remember how hard this period was when we went through it with DS.

 

RE ADOS/ADIR.  One of them is clinical observation over a period of time, so no, a parent can't influence that.  I did erroneously influence the last Connor's I completed on DS as I was answering for my almost 8 year old thinking retroactively, so if he did something at 4 a lot I scored it differently than I would have if I was thinking about current only duh.gif.  We've completed a few of them, and my recommendation is for multiple people who know the child well to complete them in isolation and in a comfortable space (ie not rushed in an office waiting room).

 

As for the Aspergers/Gifted differences, someone here posted an interesting article from a European author some time ago.  The line can be very fine and jagged between them.

 

DS was thought to be on the spectrum for a long while by EI folks, teachers, and the like.  Whenever I took him to a subject-matter expert (pediatrician, psychologist, psychiatrist) the answer was that he's not.  The thing is that a young child can outgrow the behaviours that appear spectrumy, and a child can grow into a diagnosis as they get older and their skills don't keep on the demands of their social world (in this case, the child was always on the spectrum, it was just identified later).

 

At this point, DS is identified as having SPD, he's very gifted and quirky, has some ADHD-type behaviours, is outgrowing dysgraphia, has some gross motor/motor planning issues.  DS is very neurologically different in a variety of ways, but his particularl mix of neurological differences doesn't add up to ASD (although, see above, it may at some point in the future).  I have come to conclude that the spectrum of ways of being human is very broad, and one cluster in there is identified as ASD.  I think that DS is probably just as quirky and has similar problematic aspects as another child with ASD might have, but he doesn't fit that particular diagnostic combination.  This is good and bad.  If he did meet ASD criteria, we'd be eligible for all kinds of supports and I'd have a handy name to describe his quirkiness.  As it is, he's just DS and he's making huge strides in adaptive behaviour and is thriving.  I rely a lot on approaches that work for kids with a spectrum of neurological complexities.

 

Interesting thing.  DS has a tic.  He's had it for years, and it's just never been on anyone's radar.  It's become quite pronounced of late and others started mentioning it.  So I asked him what was going on, what it felt like and how he felt about it.  I explained that this was just another example of how his brain works uniquely and is another neurological difference (DS likes this explanation), and he's ok with it.  We talked about how there may be contexts where it's less "acceptable" and that he might try and curb it at those times, and we talked about strategies to do so.   So we're carrying on, and at some point when he's next at the ped I'll mention it.  Tigerle, my point in sharing this is that whatever the diagnosis is or isn't, your son will carry on with developing and will increasingly have perspective and an ability to make choices.  At four, he's largely running on instinct.  As he learns self-regulation strategies and adaptive techniques, he'll settle more.  This tic example demonstrates, to me anyway, that my DS is still neurologically different, but that he has an increasing ability to exert self-control and make choices for himself.


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Old 02-12-2011, 02:45 PM
 
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My 11yo ds has Asperger's and sounds a lot like what you describe.  He has multiple interests and always a few favorites, and talks mainly about his own ideas with minimal awareness of his audience.  It is not only that he crosses boundaries, but that he is not aware of them and doesn't perceive the implications of his own actions on others.  Even when we speak to him about it his understanding is limited, we have to insist upon him responding and repeat our requests, and he often can not use what he does understand as a pp mentioned. 

 

This sort of thing (symptoms, esp. social symptoms) is more obvious as he gets older since it normal enough for a 4yo to be socially unaware of simple boundaries but not so much a 10yo.

 

Some aspects of the diagnosis are subjective, but it is surprising how things fit together as information from different sources is put together.  The diagnosis is made using the people who know the child in everyday contexts and are most familiar with the bigger picture of his life, which actually makes a lot of sense even though imperfect.

 

FWIW My ds does a lot of imaginative play (though he's rather rigid with how he plays) and he never has "flapped" although he stims a bit by touching things too much or things that don't belong to him and had difficulty with chewing fingers and extreme particularity with food and clothing.  He memorizes things uncannily.  (Spelling, math, songs.) Eye contact can be an issue.  Holding a pencil was difficult, but now he is a slow perfectionist with his handwriting.  He breaks things and is clumsy--also unaware of danger or generally at predicting what will happen if he does something.  Five years ago he was odd and gifted and hard to guide and communicate with--and we were unclear on whether anything was really wrong with him.  The schools thought he had no need for testing and of course he was far ahead in reading and math back when decoding was the main goal with reading.  But that didn't last.  In 4th grade the expectations had become way too much for him because he couldn't understand the questions at that level or get himself through a single page of schoolwork without prompting.  Now it is so flipping obvious because it is so much further from where the other kids his age are developmentally.  He is gifted mathematically and spatially but his processing of verbal information is extremely low to the point of being a constant hindrance.  His ability to understand the very simplest level of social appropriateness in everyday situations is mostly absent. 

 

No matter what is diagnosed, you will learn more over time and diagnoses can change over time as well.  Yes, a bias from a parent can sway the dx.  My dh and I had different views on many of the questions.  Dh was less clear about how unusual some of ds's behaviors are and more wanted to disbelieve it was a problem.  But the dx was still made and since our experiences continue at all times to confirm and reconfirm the diagnosis that doesn't seem important.  It took me years to deal with the fact that I did not want this for my son and myself and wanted to feel like he could learn adaptive behaviors for the ways he was out of step.  It is very hard. 

 

 

If you get the dx and it seems less true over time, you will work that out.  It sounds like it could very well be Asperger's and that the dx process will help you figure that out.  Kids with Asperger's are all different, they will each have some but not all of the traits to greater and lesser degrees.  I remember all that I have been through and wish you the best whatever direction this goes for your family.

 


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Old 02-12-2011, 09:00 PM
 
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FWIW, DD really looked rather ASDish for a long while, to me. She acquired language quite oddly (though very early), has/had a prodigious ability to quote, reversed pronouns till 3, and has always been fairly rigid and inflexible (getting better, still behind her peers; does mostly fine at school). She used to hand-flap a bit and I would say she still verbally stims * a little* (not much different than other 7yo boys I know; 7yo girls, not so much). She is a sensory-seeker (much less obvious than it used to be). She has at times seemed to have a throat-clearing tic. She chewed things well into her 5s (totally gone now). Still seems to have some trouble reading social cues sometimes. Played by herself or w/adults till late 4. Gross motor has always been slow; she was assessed at 2 as behind, but not enough for EI.

However, she also does no lecturing, does tons and tons of widely varying pretend play, is doing fine socially, and clearly understands subtle emotional themes in music/movies/literature. She looks waaaaay more typical now than she did at 4. I still think she's at the light light gray edge of the spectrum, but not diagnosable. She hasn't needed support at school. She occasionally has an issue with getting overemotional, but it's not considered "worse" than the issues of some of the other kids. She has never been aggressive at all, which helps. She is well liked.

ETA--she and her brother both have low muscle tone. In fact, her brother was diagnosed with hypotonia and they worried about CP and all kinds of unfun things when he was a baby. However, he was a beautiful easy birth. I do wonder a bit about DD's birth--34-hour labor, born with a true knot and triple nuchal cord.

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Old 02-13-2011, 05:04 AM - Thread Starter
 
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flowersforyou.gifgrouphug.gifdizzy.gif

 

Thank you so much for putting so much time and thought into you replies!

Y'all want some chocolate? orngbiggrin.gif

 

I am processing all this and I have come down from the worst moment I think (had a meltdown yesterday night when DH insisted a) we do not talk to anyone about this in real life except closest family until we absolutely have to, and b) I have to talk and think about something else when talking to him, too, both of which he is probably right about, but wasn't helpful yesterday night when I was freaking about how I have had to work so hard to make my way socially and professionally and will now have to help my child fight all these fights again, stuck in mommyland unable to relate to people in real life, with the opportunity for picking up my professional life and social inclusion for our family slipping away. I listen to all these moms arranging playdates at pickup while I am working hard to keep DS from kicking all of them, after which he unsurprisingly tells me about who is excluding him and does not want to play with him anymore.

 

Thank you for including me! I shall take the time to respond to all of your posts individually but have to go eat lunch.

Hugs, again.

 


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Old 02-13-2011, 03:14 PM
 
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Quote:
Originally Posted by Tigerle View Post

flowersforyou.gifgrouphug.gifdizzy.gif

 

Thank you so much for putting so much time and thought into you replies!

Y'all want some chocolate? orngbiggrin.gif

 

I am processing all this and I have come down from the worst moment I think (had a meltdown yesterday night when DH insisted a) we do not talk to anyone about this in real life except closest family until we absolutely have to, and b) I have to talk and think about something else when talking to him, too, both of which he is probably right about, but wasn't helpful yesterday night when I was freaking about how I have had to work so hard to make my way socially and professionally and will now have to help my child fight all these fights again, stuck in mommyland unable to relate to people in real life, with the opportunity for picking up my professional life and social inclusion for our family slipping away. I listen to all these moms arranging playdates at pickup while I am working hard to keep DS from kicking all of them, after which he unsurprisingly tells me about who is excluding him and does not want to play with him anymore.

 

Thank you for including me! I shall take the time to respond to all of your posts individually but have to go eat lunch.

Hugs, again.

 



Oh dear!

 

I've learned that DH and I handle things differently - I process by doing (studying, consulting, discussing), whereas he needs space and quiet.   It is important when you have a child with extra needs to find additional supports because a typical marriage isn't built to handle all of this in isolation :). 

 

I'm very empathetic to your feelings and musings about loss - loss of what you'd imagined, change in career trajectory and timing, worry over both children, exhaustion as you look toward a difficult and complicated future. 

 

Four was a hard age with DS - I didn't know what was going on, four is challenging as a developmental stage, primary school was looming, he didn't have strategies yet and needed more time to develop.  There are posters in this thread and your SNP thread that are sharing the perspective of being where you are now and getting to a better place.  It will happen for you too :).  Whatever stuff gets labeled, you'll find things that work for your DS.  It takes time, and is such a challenging stage of life, but this is a (large) bump in the road and you won't be "here" forever.

 

 

You might like this:

 

http://thinkingautismguide.blogspot.com/2011/02/asd-and-giftedness-twice-exceptionality.html


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Old 02-14-2011, 11:11 AM
 
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I really like that article. There were some things in there that I really needed to hear at the moment!


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Old 02-14-2011, 02:24 PM
 
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This is kind of weird, though, in the article intro: "A key concept in "giftedness" is exceptionality -- the child who is gifted is rare -- "one in a hundred thousand" or "one in a million".

One in a hundred thousand? One in a MILLION? There'd be some awfully small gifted programs with those numbers!

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Old 02-14-2011, 05:08 PM
 
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Quote:

Originally Posted by Tigerle View Post

 

had a meltdown yesterday night when DH insisted a) we do not talk to anyone about this in real life except closest family until we absolutely have to, and b) I have to talk and think about something else when talking to him, too, both of which he is probably right about, but wasn't helpful yesterday night when I was freaking about how I have had to work so hard to make my way socially and professionally and will now have to help my child fight all these fights again, stuck in mommyland unable to relate to people in real life, with the opportunity for picking up my professional life and social inclusion for our family slipping away.

 


grouphug.gif I'm sorry!  My DH and I relate very differently on these issues and they've put stress on our marriage over the years. And being my 2E dd's mommy was a full time job for more years than it would have been with a simplier kid.

 

It kinda sucks.  hide.gif

 

I think that part of the problem getting clear dx's is because it isn't black and white, but all shades of gray. It's a continuum. There is a very fuzzy line between "gifted and quirky" and "ASD but still gifted." The closer our kids are to the fuzzy bit in the middle, the more difficult it is to figure out what to call it.
 

I no longer care what labels my DD has -- I just want her to get the help she needs to make a life for herself that she likes. They can give her any label they like if it gets her what she needs.

 

 

 

 


but everything has pros and cons  shrug.gif

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Old 02-16-2011, 08:54 AM - Thread Starter
 
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I'm back - no, I have not been eating lunch all this time, but was supposed to go in to work this week and have come down with a bad cold. Good thing is, work is out for the moment, so all sorts of babysitting issues are happily resolved. Bad thing is, it's another reason to have a horribly short fuse and fight all the time with my mom who was to babysit but is now staying over just to help out. Deep breath. Relax. Be grateful for support.

 

I have talked about the diagnostic process with my parents, his peds and two very close but far-off living friends who I trust. Every single one of them says" this kid? No way!" except for the friend who is raising a very intense, probably very gifted daughter who, while well-liked by many peers, seems unusually uninterested in them - in short, who knows something about that fuzzy bit in the middle -  who went "hmmm...". We had a very thoughtful discussion about what are red flags and what aren't and that there is no way around having this checked out, if only for the help it can provide us. And I need some outside, (hopefully) objective help.

 

the consultation with the psych has helped already - I havae managed to stop DS from hurting me so much pulling my hair. He does twirl his own now, but that's up to him for the moment  - we just needed him to stop hurting me for our relationship. It's not good to dread bedtime which should be a half-hour of trust and connecteness because it tends to turn into an hourlong fight.

 

For the record, I am of course not willing to influence the process one way or another - I am just worried that I could do so inadvertently, the way joensally describes. I have filled in a number of questionnaires of the never/sometimes/often model and it still feels subjective to me. How many tantrums a day are "often"? Depends on what you think is normal for a 4yo, right? I hope that the preschool teachers, for al that they annoy me sometimes, at least have a sound grasp on what is unusual and what isn't and will make sure that DH is part of the ADOS/ADIR on the day.

 

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I found that by having us (both dh and I filled out forms separately) and the teachers fill out forms, they got a pretty good picture. For example, the teachers noted that ds often spoke too softly and asked 'what' a lot, which indicated an issue with auditory processing.

Thank you for pointing this out - DS has times when he says "what" a lot, and repeats new words that he hears to himself. It seemed to me like a tic because when you insisted he must have heard he could usually correctly repeat what one has said. I'll just make a mental note. I think an auditory processing issue is definitely there.

 

I have been thinking hard about times when he shows social cognition. I rather come up with opposite examples. Such as his recent tendency to say "hi" to strangers in town or in the city or to wave at strangers. I have had to explain to him that it is okay to say hi to strangers in the village but not in town and why. It felt weird having to explain that to a 4yo. He can be very very kind to DD. Then when she cries, he freaks out and hits her carseat, and he has tried to put a pillow over her face. Man, were we all over him that day! We do not leave the two alone for the moment.

 

 

Quote:
She used to hand-flap a bit and I would say she still verbally stims * a little* (not much different than other 7yo boys I know; 7yo girls, not so much).  

 

 

I have realized that this odd goofy behaviour he sometimes shows and that has driven us crazy (grimacing, making funny noises, stomping and flapping his elbows, repeating the smae sentence in baby-talk over and over and over) could very well be stimming. Odd to what diagnostic uses youtube can be put! loraxc, would you describe to me what verbal stimming looks like and sounds like in your house? it's interesting - though they do not sound alike superficially, the way you describe your DD just reminds me DS a lot.

 

Linda, littlest bird, that was very helpful to understand about the timeframe. I gather that 4 is really to early for a definitive diagnosis as this is an age when social skills tehy are missing could still develop - but that it is an age that gaps are starting to show, if the social skills are definitely not there (yet?). And that by ten or 11, things will have clarified.

 

joensally, I really like the way you put this:

 

 

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 The thing is that a young child can outgrow the behaviours that appear spectrumy, and a child can grow into a diagnosis as they get older and their skills don't keep on the demands of their social world

 And this:

 

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  I have come to conclude that the spectrum of ways of being human is very broad, and one cluster in there is identified as ASD. 
 
Tigerle, my point in sharing this is that whatever the diagnosis is or isn't, your son will carry on with developing and will increasingly have perspective and an ability to make choices.  At four, he's largely running on instinct.  As he learns self-regulation strategies and adaptive techniques, he'll settle more. 

 That is so true. I am very sure that we are somewhere on the edge, the "fuzzy bit in the middle" - it means we've got so much to work with. I think that if there had not been so much aggression involved, we would have waited and seen if he outgrew these difficulties, and just hoped for a better fit in primary school. I am still not sure it is a good thing in the long run going into thsi so early. Yeah, let me look into that crystal ball. We may congratulate ourselves on starting sevices early, or hitting ourselves that we exposed DS to negative labelling from people who do not understand all this.

 

 

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I no longer care what labels my DD has -- I just want her to get the help she needs to make a life for herself that she likes. They can give her any label they like if it gets her what she needs.

 This is a very sound place to  be, I think. I am not there yet. I have always been all for early tracking in school and have never questioned the need for standalone special ed services as opposed to inclusive schooling (basically because college prep track was a social lifesaver for me at 9 and inclusion always sounded to me like one size fits all or else), but once a 2e diagnosis is looking it totally changes your picture. Who woulda thunk...?


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Old 02-16-2011, 01:26 PM
 
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oraxc, would you describe to me what verbal stimming looks like and sounds like in your house?
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grimacing, making funny noises, stomping and flapping his elbows, repeating the smae sentence in baby-talk over and over and over)

Well, it looks just about exactly like that. Repeated weird noises, bodily craziness, repeating, baby talk/ nonsense. She gets in a mood when this comes out, usually when tired or overstimulated. However, her best friend (well, sometimes I wonder if he's a little spectrumy, too, though AFAIK no one else has ever considered that he might be) does all this stuff too, when they're together. They do all this crazy nonsense talk--"Lellll lellll lellll, nothingpigpig" being an example of a phrase they perseverated on last year. I've seen the other boys in her class get totally wild like this, too. I almost think it's a little contagious, so to speak.

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Old 02-16-2011, 08:08 PM
 
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Tigerle, I'm glad to hear you're feeling a bit better.  A lot of us have been there (or are there), and it's not fun.  Please update on how the testing goes!  DS loved it.


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Old 02-17-2011, 03:32 PM - Thread Starter
 
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So this morning, the morning of the first test DS wakes up at 5 and has to go to the bathroom, complains of a stomachache, thinks he's got to throw up but doesn't ...wouldn't go back to sleep properly but rested cuddled up in the guest bedroom with granny...needed the bathroom at 7 again but was perfectly fine then...and at 9 I had to make the call whether to go in or not...we ended up going, as he was obviously healthy, if tired from having had a shorter night. No idea whether I did the right thing. I wonder whether he was upset about the process? I told him it'd be fun, all puzzles and games, that they wanted to find out how his brain works, and held out rewards (chocolate immediately after participating well, and the extension set for his marble run that he'd found lurking in the present hidey-hole recently and been asking about. Maybe I overdid that? I am new on this reward thing...

But the tester was very nice, DS clicked with her right away, and she told me after that he'd participated "super-well", with DS insisting that she'd even told him twice as well as the other kids". That was after he'd already had his chocolate, so it may be accurate reporting.

 

However, that is all that I have been told so far, haven't even been told what the test was called or when they'd talk to us about the results  - from the copy of the fine-motor sheet DS was allowed to take home I managed to find out, with some detective work, that it was a general development test calles the Vienna development test, which isn't an IQ test but includes a cognitive section, not the Wisc as the office assistant had told us on phoning (I questioned this then but she insisted...). I happened to run into the office assistant who set up our initial consultation (the testing was in a different building) and when I asked whether it wasn't advisable to have DH involved for the parent interview part of the fiurther autism testing and that we might have to move the date she told me that whether we'd go through with the autism testing was contingent on what the testing today turned up (first time I heard that!) and she couldn't tell me when we'd be told but promised she'd tried to find out for us today. Haven't heard from her, of course. Now this is like the 5th incident of poor communication skills and I am going to speak to someone about it, it's buging me! But she is just the office preson after all, I do like the actual professionals.

 

So not a real update at all! times remain interesting.


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Old 02-17-2011, 06:51 PM
 
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I found this book to be really helpful:

 

Misdiagnosis And Dual Diagnoses Of Gifted Children And Adults: ADHD, Bipolar, OCD, Asperger's, Depression, And Other Disorders by Webb, et al. (2005)

 

Good luck with everything -

 

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Old 02-17-2011, 09:59 PM
 
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Your son sounds much like mine! We had him evaluated around that age, and the person we saw did come away saying that he thought that a gap between DS' intellectual abilities & emotional/social development (which is pretty average) was to blame for what looked like Aspie-like traits. For me, it came down to knowing that when I read about and saw how Asperger's looks, it wasn't my son. He's obsessive and flaps his arms on occasion, but the other things - inability to look someone in the eye, odd gait, lack of empathy - just weren't him. They may, in the case of empathy, look different from "typical," but they're not a disorder. 


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Old 02-19-2011, 02:11 PM - Thread Starter
 
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Originally Posted by shooflymama View Post

I found this book to be really helpful:

 

Misdiagnosis And Dual Diagnoses Of Gifted Children And Adults: ADHD, Bipolar, OCD, Asperger's, Depression, And Other Disorders by Webb, et al. (2005)

 

Good luck with everything -

 



AArgh! I meant to order it back when eepster recommended it (it takes a long time to be shipped to Europe from the US) and now remember that I didn't. duh.gif

I found a place that promised delivery within ten days. We'll see.


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Old 02-19-2011, 02:17 PM - Thread Starter
 
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Your son sounds much like mine! We had him evaluated around that age, and the person we saw did come away saying that he thought that a gap between DS' intellectual abilities & emotional/social development (which is pretty average) was to blame for what looked like Aspie-like traits. For me, it came down to knowing that when I read about and saw how Asperger's looks, it wasn't my son. He's obsessive and flaps his arms on occasion, but the other things - inability to look someone in the eye, odd gait, lack of empathy - just weren't him. They may, in the case of empathy, look different from "typical," but they're not a disorder. 



Yes, that would be the other explanation. I am quite sure his socio-emototional develeopment does not look typical and it will probably be hard to asses. It does appear behind to me, not average, though.

 

Sheesh, I just want the results from this preliminary test now!

Part of assessing the socio-emotional develpment was (again) a parent questionnaire with stuff like "does he button his own buttons?" Or, not much more helpful "Can he do water-colours for ahwile without supervision?" I suppose he could, woudln't drink the water or anything, but who would he talk to?lol.gif

 

The other part (it says on the web) was gauging the mood of people on photographs. That one might be interesting.


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Old 02-19-2011, 04:14 PM
 
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I'm not sure where you live in Europe but amazon.de has it and ships to more than just germany: http://www.amazon.de/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677/ref=sr_1_2?ie=UTF8&s=books-intl-de&qid=1298157234&sr=8-2

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AArgh! I meant to order it back when eepster recommended it (it takes a long time to be shipped to Europe from the US) and now remember that I didn't. duh.gif

I found a place that promised delivery within ten days. We'll see.



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Old 02-19-2011, 04:26 PM - Thread Starter
 
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I'm not sure where you live in Europe but amazon.de has it and ships to more than just germany: http://www.amazon.de/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677/ref=sr_1_2?ie=UTF8&s=books-intl-de&qid=1298157234&sr=8-2


 


Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.


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Old 02-19-2011, 04:42 PM
 
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Wow, that's crazy! When we lived in Germany many times they'd ship the next day and it'd be here a few days later!  I wonder if they just don't have the book in stock or something?  Also check amazon uk too. Good luck!
 

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Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.



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Old 02-19-2011, 04:58 PM
 
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Ach!  You have to read this one if you're dealing with 2E!  Do you have The Mislabeled Child?  That's another must read.

 

Have you been reading the Eides' site?  There are some great articles there - not the blog (which is also great), but the website with articles.
 

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Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.




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Old 02-20-2011, 02:18 PM - Thread Starter
 
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Ach!  You have to read this one if you're dealing with 2E!  Do you have The Mislabeled Child?  That's another must read.

 

Have you been reading the Eides' site?  There are some great articles there - not the blog (which is also great), but the website with articles.
 


 


Yep, have a well-used copy of the Mislabeled Child. I only know the blog, not the website though. 

It's annoying because I meant to order weeks ago, figured I might find a faster shipment than the one amazon offered and then forgot to follow up...

 

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Wow, that's crazy! When we lived in Germany many times they'd ship the next day and it'd be here a few days later!  I wonder if they just don't have the book in stock or something?  Also check amazon uk too. Good luck!


Nah, it wouldn't be in stock - the market's just not big enough for the subject! What I don't understand is why it would take them over a month to import it. Usually it's only about 10 days for imported titles...
 


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Old 02-20-2011, 03:16 PM
 
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Happy reading...

 

http://neurolearning.com/Library/


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Old 02-25-2011, 04:58 AM - Thread Starter
 
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So I managed to reach the office assistant again. The results of the developmental test are in and according to her, are “borderline”. They would be. So they are going ahead with the testing in two weeks (ADOS and ADI). We could have gone ahead next Friday but  1) DH would have to be covered in school (he’s a PS teacher) and has the next week off anyway, 2) DS is sick with a 40 C° fever and will probably need the week to recover and 3) it’s carneval week in preschool (this is a BIG deal here, way bigger than Halloween) and I hope he’ll get to enjoy at least the end of the week dressed up. I’m probably going to regret this occasionally but would regret it even more if i could not let him enjoy a bit of carefree carneval (he LOVED it last year, it really changed his attitude to preschool).

 

I asked if we could have the subtest results to understand what “borderline” was supposed to mean. She said they don’t like giving out preliminary results so there won’t be “bias” but we will get a full eval report at the end. But she’ll ask the psych.

As she has never followed up on anything without repeated prompting i kinda think we will have to wait, it isn’t worth it to me to make a fuss over at this point.

 

I realize I was kind of hoping this would blow over with “there isn’t really a problem as we thought”. So we’ll remain on the fence. I will have to remain on this fence for quite a while, I suppose and have to make peace with not knowing as Linda says.

 

I know I am not alone here, I am thinking of all of you who are where we are.

Thank you for listening.


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Old 02-25-2011, 09:20 AM
 
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I am in exactly the same place - totally understand you. We're sitting at least on a tentative AS diagnosis, getting an IEP today, but don't have, and won't have an "official" diagnosis until probably April. I promise, after all the testing, waiting, online-scaring-myself-to-death with possibilities, checking out everything I could at the library, and emotional realization/acceptance of Aspergers....well, there will be some hair pulling involved if April brings a PDD-NOS decree. I could have come up with that by myself, no offense to the professionals.

I hope little one soon feels better and can make it to the carnival! And you hang in there too. I try to remember that DS is the same DS either way - whatever it's called - so I'm just doing what I've always done... The best I know how at the moment....


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Old 02-26-2011, 03:46 PM
 
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OP- I'm a little nervous I've been in denial about dd (4.5yo). Your house sounds so much like mine but when I first read this thread, I thought, "Awww man, I wish I could give her a hug." Then this week went on and I realized my dd sounds a lot like your ds. So, is it time to seek some help/advice? Maybe this requires a thread of my own.

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Old 02-27-2011, 04:43 AM - Thread Starter
 
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OP- I'm a little nervous I've been in denial about dd (4.5yo). Your house sounds so much like mine but when I first read this thread, I thought, "Awww man, I wish I could give her a hug." Then this week went on and I realized my dd sounds a lot like your ds. So, is it time to seek some help/advice? Maybe this requires a thread of my own.



I realize that if you look at my threads over the last few months (like the one about his sucking my nose at night, and the one about whether it might be AD/HD or sensory issues, and the emotionally delayed?-thread) you can tell how I have moved from denial to "something's going on" to acceptance that he might be on the spectrum. Then I read about loraxc's, joensally's and Lynn's experiences, whose kids are gifted and quirky and goofy and complex but who have not sought or not received a spectrum diagnosis and feel that their instincts were right and their kids appear to be growing out of their issues (even very definite spectrum issues like echolalia and handflapping or inability to recognize emotions in faces) and I start wondering again - should we have waited?

 

But there are two things that make me feel like we need to act NOW:

1) the rejection from his classmates due to his aggressiveness/annoying tendencies (I have known rejection for giftedness and it somehow feels different) - like there is an instinct in these children that might be correct, even if his teachers, while asking probing questions, always seemed to think there wasn't anything serious going on, just something we were doing wrong in our parenting...

2) I feel that there is a slowing down or even regression in some aspects of his development and it does not appear to be caused merely by sensitivities and sensory issues combines with taking more in and having woken up to the socio-emotional expectations of preschool but by inability to deal with these expectations, kwim?

Such as: this time last year, we had started to read chapter books: Pippi Longstocking and Troublemaker street. He loved them. I was looking forward to read so many more, looked out age-appropriate choices.

Over a year later, we still read the very same chapter books: Pippi Longstocking and Troublemaker street. There has been no devlopment here as far as I can see. he refuses to try new books. He wants to read only non-fiction. I insist on one non-fiction book for a bedtime story (out of instinct at first, now bcause I've read about it) and for weeks now, he invariably chooses a picture book about getting a new sibling that he could have listened to as a two year-old. We also still play the same board games for the 3-5 age group that we started playing when he was two. He can't handle th frustration tolerance needed for games for older kids. We've tried!

I mentioned all this to DH (who draws semi-professionally) and he admitted that he felt DS hadn't really made progress in drawing either.

The stuff he does suddenly looks ....age-appropriate. What terrible thing to say isn't it, that age-apropriate might mean something is wrong? but it seems to me that with the gifts he has shown, the support and the upbringing he has had, there should have been more development, but I see stagnation.

 

As he has been sick these days, I've suddenly seen a lot more hand-twisting, aimlessness, facial ticking...all of which sounds like the psych is correct: he has been compensating hard, but it is beginning to break down.

 

Edited to say I apologize, I had to go eat lunch but wanted to actually get to the point you've raised. I realize that things might be even more complicated for you as your daughter is also, IIRC, hearing-impaired with cochlear implants...but my point is that I think that if I had kept seeing a development for the better with DS's issues, I probably would not have decided to seek an evaluation. But we tried to implement all sorts of structures and routines and some things got better, but others got worse and the stagnation in development has now become clear to me, too.


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Old 02-27-2011, 07:49 AM - Thread Starter
 
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 I try to remember that DS is the same DS either way - whatever it's called - so I'm just doing what I've always done... The best I know how at the moment....



 The scaty thing for me is that DS does seem to me to have changed as he has become quirkier and I am afraid that an AS diagnosis will mean that he will become quirkier still, as the gap between him and his NT peers grows.

I keep reminding myself that DH and I were quirky kids and grew into functioning adults. I was hoping DS might have an easier journey of it but it looks like it might be harder...


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