Differentating Gifted OEs/intensity/sensory issues from Asperger’s syndrome: BTDT advice?

[Tigerle]

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 to 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...?

[marge234]

I am not in your situation but couldn't read and not at least wish you luck and let you know what little I have been told about this. A psych with whom we consulted does not dx Aspergers until a child is older, more like 7-9.  The idea as I understand it is that Asperger's isn't something you either have or don't have at age 4.  It's  hard to tell which kids will definitely end up somewhere on the spectrum, and which ones--with tailored psychological, sensory, speech intervention--will not.   So his preference is not to give a dx based on what a child is doing at 4.  That said, if a dx gets services that could help the child--either to a more adaptive level of functioning or off the spectrum entirely--he wouldn't be too pure to do it.  

[Lollybrat]

In a way, our situation is the opposite of yours. My son is 6.5 and was diagnosed with autism a week after he turned 3. There is no doubt that he is on the autism spectrum. However, he is very academically advanced in reading, writing, and math. He may be gifted, but at this point we are not sure.

DS has hyperlexia and could read before he could talk. He is a natural decoder and can accurately decode any word he sees. His reading fluency is several years ahead of his grade level. His reading comprehension is also above grade level. He does much better with non-fiction than fiction. Understanding stories means having to understand the social interactions between the characters and that is difficult for him because of his social impairment.

DS has difficulty with verbal language. He has language delays and understands what he reads much better than what he hears (this is why he has a diagnosis of autism rather than Asperger's.) His hyperlexia is a gift because it has provided us with a powerful teaching tool. We have used the written word to teach him everything.

DS likes to write, although he has motor skill delays that make handwriting difficult for him. He has been able to type since he was 3 or 4 and finds it easier than writing. However his writing is improving thanks to the hard work he does in OT. DS can express himself in typing much better than in verbal language, and likes to type up "reports" of what he has done during the day.

As a preschooler, DS attended the district's special needs preschool. For Kindergarten, he was placed in one of the district's autism classroom. This was the perfect setting for him. It was a K-2nd grade class and all the students are high-functioning. DS got a lot of 1:1 instruction and did small group work with the 1st graders. This setting allowed him to learn the skills he needs to function in a regular classroom: how to take instruction in groups, how to work independently, how to follow the classroom routines, etc. It also allowed the teachers to give him academic work that was at his level.

This year, DS is in first grade and partially mainstreamed. He spends mornings in the regular classroom and afternoons in the autism classroom. In the autism classriom he works on adaptive skills, social skills, and more advanced academic work. (DH and I sometimes chuckle that the academic work DS does in the autism classroom is more difficult than the work he as in the regular classroom. It totally challenges some people's preconceived idea about Special Education.) Also DS gets pull puts for Speech, OT, APE (Adaptive Physical Ed) and for reading enrichment. And he gets time in the sensory room every day.

As I said, we do not know at this point if DS is gifted and therefore 2E. He is at this point academically advanced because has an amazing memory and is very good at facts. Only time will tell if he will continue to be advanced when the subjects become more abstract. Doing an IQ test on DS would be very difficult. Due to his verbal language difficulties, a language-based test would not be accurate. But because DS also has a vision impairment, a visual IQ test would not work well either. So basically we have to wait and see.

I'm not sure is any of that helps you. But you can see that you are not the only one trying to figure out the whole puzzle of ASD, giftedness, and 2E issues.

I agree with the PP that in my experience many doctors will not give a dx of Asperger's to a child under the age of 7 or so. Younger than that, they usually use a PDD-NOS dx, indicating that the child is on the spectrum, but not specifying precisely where on the spectrum.

The ADOS is done by the evaluator interacting directly with the child. I am not familiar with tha ADIR. We did the ADOS and the GARS (Gillium Autism Rating Scale). the GARS is a parent/caregiver questionnaire and there is an Asperger's version as well.

It's frustrating to not know what is going on with your child and to go through the process of getting a dx. Hugs and stay strong.

[KimPM]

Well, my DS was evaluated in Oct 2010 when he was 4 (he turned 5 in Dec).  He was dx'd with Aspergers.  I have bolded the things in your post below that apply to my DS; where I added something to your words I put it in [ ]'s.

Originally Posted by Tigerle 
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, [sometimes] 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 [occasionally] 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). 

[My DS has not been aggressive with other kids, but he has not been in a school setting at all.  Mostly he just ignores or avoids other kids.  As far as being chatty - it's not reciprocal conversation, he talks "at" you.  He loves to be the "little professor" and tell you everything he knows about whatever is interesting him at the time.]

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 to annoy/poke/kick etc.) 

[My DS does not understand how to pretend at all.  There is no imaginative play at all.]

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!)

[My DS loves to line things up and has done so for years.  He insists on whatever order he is doing at the time.  Heaven help you if you change the order.]

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”?

[My DS is generally a sensory avoider in most areas, particularly tactile, visual, and sounds, and a seeker in a few specific things.]

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?

Where we went, they don't believe in having SPD as a separate diagnosis.  They considered his "sensory issues" as part of his diagnosis (it was just one more pointer to them).  But it was not a singular defining variable where they said he has sensory issues so he's on the spectrum, or anything like that.  The place where I went is a well-known center where they evaluate just for autism and related disorders.  They are known not to "believe in a diagnosis of SPD" even though they realize that sensory issues exist.  Does that make sense?  Other places may do it differently.  But really, I think they will likely take the sensory issues into account - along with all the other things - to make the determination.  Sensory issues won't be the key determiner of whether he has Aspergers or not, or is on the spectrum at all or not.
 

Originally Posted by Tigerle 

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...

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

My DS had the ADOS (Autism Diagnostic Observation Schedule).  It was performed by an SLP-CCC.  I was impressed with her.  She met with us first and gathered some brief information from us verbally, as well as reading what \we had written on the forms about DS. Then she worked with him alone (with us observing from an observation room "behind the mirror") for maybe 45-minutes.  She interacted well with him and she made some excellent detailed observations.  She wrote a 4-page report on it all.  She caught a lot of stuff that was very subtle, and to the untrained eye would just be ignored.  He was even "having a good day" and she still caught a lot of subtle stuff.  This is why I took him to the center in the first place - because they have seen it all, in regards to children on the spectrum.  They can spot the characteristics even on a good day, no matter how subtle.

My report says that the ADOS is a "semi-structured assessment of play, reciprocal social-interaction, and social communication skills, and consists of the presentation of a series of standard activities that allows the examiner to observe and score the occurrence or non-occurrence of behaviors that are associated with the diagnosis of an [ASD].  The activities are playful in nature and focus on the use of toys or other concrete materials that are generally motivating to individuals with typically developing communicative and social-reciprocal skills.  Each activity creates an opportunity for the examiner to observe an individual's behavior.   Individuals who are diagnosed with an ASD or autism typically display patterns of atypical behavior, which are identified via this assessment."  The ADOS is exactly what the SLP was doing with my DS for those 45 minutes.  She also made observations of how he acted/interacted with us before and after the ADOS itself.  After this was done, it was lunchtime for us while she met with the ped neuropsychologist to share her results.  During this breaktime we were invited to participate in a volunteer study.  This study involved giving him some version of an IQ test...however it was a shortened version as it was just a volunteer study, squeezed in during lunchtime.  I was in the room the whole time during the "IQ test" and I seriously doubt the validity of any score they gave him as indicative of any measure of his IQ.  It would be hard to get an accurate score at that age.  One of the problems with the partial test they gave him is that they had pretty much no reading or writing.  A lot of it was in pictures.  I've noticed that my DS has trouble decoding pictures sometimes, so this method would not have elicited a true score.  Any IQ test given like that, I have trouble believing it's representative of overall IQ. 

After lunch we met with the ped neuropsychologist.   Remember that she had consulted with the SLP before lunch.  The ped neuropsych was not nearly as interactive with him.  She did ask him a few pointed questions, rather dryly.  She talked with us a lot and tried to elicit more information from us than we had already written on the intake forms and had already discussed with the SLP.  She didn't have the best interpersonal interaction with us or him, which I thought was kind of strange.  She acted like she didn't believe us when we told her DS was reading at (I think I wrote 27 months).  I told her I had found some video that we had of him reading a book at that age.  He was actually reading earlier than that, but I didn't have physical proof of it.  Aside from the strange interaction with the ped neuropsych, she did have some correct observations regarding his behavior.  It sounded like she was going back and forth between Aspergers and PDD-NOS at the end, so she explained the specific differences between the dx's.  After some further conversation with us, she came to the conclusion of Aspergers - and the reports specifically said the SLP and the ped neuropsych were in agreement on this dx.

Bottom line is you can't really talk your way into a diagnosis for your child.  He will display behaviors in response to the test and even just being there.  If they are good evaluators, they will notice any spectrum-like behaviors, no matter how subtle.   Even with the back-and-forth we had at the end with the ped neuropsych, there was no question of DS being on the spectrum - just a matter of which specific place he was.  It's possible that could change over time, back and forth between PDD and Asperger's.

As far as being gifted, I don't know if he is or not...but he seems pretty bright in some areas, even though he's delayed in others.

HTH.

[christinelin]

Many of the things you describe are quite common in kids with Aspergers, but can also be present in kids with sensory issues or who are gifted. A good evaluator should be able to parse out which is which. He is likely both gifted and has some complicating special need.

A couple of thoughts: The fact that structure and adult direction helps improve behavior is great and would also be typical for a child with ASD (and is helpful for many NT kids, too!) -- it helps to make their world more predictable (peers are notoriously hard to predict). Many ASD kids prefer non-fiction: fiction has characters with motivations that may not be clear to them and that may set them off. That said, my son loves the Magic Treehouse books, but again -- they are more formulaic. Things like hand flapping and lining things up is common in ASD kids, but many don't do that (mine doesn't). One part of the diagnostic criteria is repetitive behavior: these can be topically interests or stimming behavior like hand flapping (or both).

With pretend play: I thought my son had tons of pretend play before his evaluation. He basically lived as a pirate (then an area of special interest for him). After the eval, though, I could see that he was mostly parroting pirate stories he knew rather than coming up with his own stories. ASD kids do tend to do better with structured pretend play. My son's ADOS test included a birthday party scene. He struggled to maintain play when there was no framework, but he did nicely when he knew it was a birthday party, because there are roles and predictability.

How do you know when a kid who loves to lecture is gifted or has ASD? Great question. I think one of the main defining things is does he pick up on cues that others are losing interest in his topic? And does he have the flexibility to move on to something new? And does he use his play to connect socially? At 4, my son really preferred to stay as a pirate. He is quite flexible for a kid with Aspergers, so he could move on, but the depth of his interest was quite striking. My NT kiddo (now 5) is crazy about firefighters, but he is always using his interest to connect with other socially. He may stay in firefighter mode, but he uses his topic to pull friends into his play and if others want to do something different, he is more motivated to stay in relationship than he is to stay with his area of interest. It's subtle, but totally clear once you know what you are looking for.

Re: ADOS/ADIR: Both are much more objective than you could imagine. With the ADOS, they are basically counting behaviors and NT kids are quite predictably high in terms of how often they reference, make eye contact, and connect with others as they play. ASD kids, even highly bright, verbal kids, not so much.

Re: IQ: yes -- it's not totally reliable at 4. My son's IQ at 5 was average, but now at almost 8 he retests as gifted. It stabilizes more around 7. The IQ test, though, can give you information about his learning strengths and weaknesses even if the number isn't totally set yet. ASD kids often have a gap between the verbal and performance IQ and that is liking what your tester will be looking for. (Although, again, not always. Mine doesn't have that split.)

You said you find alternative explanations for everything. I totally remember that place. A diagnosis was helpful for us because it stopped the constant, "is he? isn't he?" chatter in my brain. I think the most important thing is to really trust and feel good about the evaluator. I spoke with our psychologist for a while on the phone and then by the end of the parent intake interview, I knew that she knew her stuff and would know what was going on. I joke with her now that we didn't need to do hours of testing. When she came to get us in her waiting room, he said, "Hi - I am Mr. Sprinkler-head!" and was completely anxious. We could have said yes --it's Aspergers in that moment. But having reams of testing helped me be sure.

Two-plus years ago this was horrible for me. Now, though, I can see my amazing, bright, beautiful child for who he is. He does have Aspergers, but he also has friends and is learning coping skills that will allow him to totally use his gifts in the world. It's a good place to be. I hope that whatever is going on with your son, you will be able to be there, too. :)

[Linda on the move]

My dd is 2E, both gifted and on the spectrum. She is now 14 years old.

When she was 3, they really didn't know what to label her. She had lot of labels, but not a definitive one. She had "autism like behaviors," but they were not intense/consistent enough to qualify for an autism dx at that time.

Eventually her dx was changed to PDD-NOS because she really needed an autism dx to get the accommodations she needed at school, and part of what makes a particular dx appropriate for a child is how they are doing with the requirements for someone their age in our culture.

Her main dx now is Asperger's, but she wasn't given that dx until she was 13. It really wasn't a common dx when she was little, and no body under 6 could be given it because all the traits of Asperger's and make it as different than other ASD are common in typically developing children. At that time, it was believed that if they child didn't qualify for PDD-NOS at a younger age, it was POSSIBLE they would outgrow their quirks with a little time.  I really don't understand the change, and I must admit that I feel uncomfortable labeling young children with Asperger's.  I'm not sure how she would be labeled as a small child NOW, since things really have changed in the last 10 years.

A lot of 4 year old have trouble with social cues, lack empathy, etc

From my experience, I'd recommend letting go of the idea that with eval will end with a nice neat statement labeling your child and telling you what to expect as they grow up. It's really just a snap shot of what he is like right now. Just like your child will look different as they grow up, evals can be different at different ages. They sometimes even change the criteria for a dx. Part of this path is making peace with the unknown.

some of your specific concerns:

<<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?>>

The kinds of things they had be fill in were pages and pages of questions about how my child did in different situations and I rated them by filling in bubbles ranging from often to never, and the thing was scored by a computer. There were TONS of questions. It was looking for trends, and then the results were interpreted by the evaluator. I just did my best to be accurate. Many thing were considered in the eval -- the testing the evaluator did, input from teachers, what I said, and the answers to the questions. The questionnaires are just one ingredient.

<<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:>>

I think it is the level of obsession, and lack of ability to shift gears to what else is going on. There are several 2E kids at my DDs school. One highschool boy loves electronics and spends a lot of time building things. He cannot carry on a conversation about anything else and isn't able to recipicate by showing interests in what other people like. Talking to him is very much a one way street. With my DD, things aren't so extreme, a 2-way conversation is something she can do now, but it is skill she learned in a special class. It is something she sometimes chooses to do because she knows that other people like it and doing so is more *normal.*  It's not a natural thing.

Many 4 year olds are pretty self absorbed. Just because a child doesn't get this at four doesn't mean that they never will. I think that how easy it is for a parent to teach basic conversation skill is another clue about what is going with the child.

Sensory issues can occur without any ASD stuff, so they don't really *count* toward a dx as far as I see. And many NT children like non fiction books, esp ones with good pictures. The real world is very interesting to small children.

IQ testing with such a young child, even if they are NT, is a crap shoot. With a sn child it is totally random. And I really think that IQ testing for people with ASD is a stacked deck against them because it so goes on verbal skills. At DDs IQ test last year  (when she was 13) I feel like we got a pretty good read on her because she was old enough to comply with the test. And this is the first time she tested as gifted. Her IQ was tested in 6 areas and there was a big range from highs to lows, and it was the pattern of these scores that made her Asperger's dx definitive. Now we can say she is "text book" aspergers. But we couldn't before. It was always fuzzy.

To, when I read about your child, it is the violent stuff that is the biggest issue because from my experience, that is a HUGE factor is school placement. Any dx or therapy that can help understand that or treat that is GOOD. I'm not a good one for input on that because my DD shuts down. Boys with Asperger's are much more likely to become violent than girls with same dx.

<<Is there anything I ought to know before going into this testing?>>

That's he's the same kid after the testing that he was before. That whatever happens, you'll be able to work through it. That even though sometimes the path ahead isn't clear, things happen and change, and help arrives when you least expect it. That he is wonderful just the way he is -- that he has gifts to bring the world and something to contribute, and that he is exactly the way he is supposed to be for whatever his purpose is in life. That you really do have the strength to get through this, even though at moments you'll be quite sure that you don't. That you are the right mom for him, and god gave you to him for a reason.

Peace.

Edited by Linda on the move - 2/13/11 at 4:00pm

[Tigerle]

Thank you so much for this wealth of information, and for being so kind!

I will be bback and write more as I process this, but wanted to thabnk you and comment on some things that stand out for me.

I feel much better going into this now. I am still struggling with the concept that his "diagnosis" or lack of one" may be murky for years to come, but of course it has to be, and it is also reason for hope  thinking that 4yo really have a lot of time to develop and grow out of things yet. Not that I believe in a cure for autism, I am not that naive. But I distinctly remember having to be taught empathy as a preschooler by my mother, being completely out of tune socially in elemtary school (and socially isolated due to bullying, too, which I am beginning to understand may have been two issues, not just one), and understanding social rules intellectually as a teenager, taught by the well meaning friends I finally had in college prep. There is room for growth here. marge, I have no idea whether we need the dx for services but an pretty sure about needing the services. It is the aggression that is the major problem like Linda said.

LInda, Kim, Christine, the information about the ADOS was exactly what I needed, thank you so much! So there is a part of this that is not mediated by people who know the child well and may be biased, like parents or teachers. Still subjective in a way, not like a blood test or ct imagery, but standardized observaton by an unbiased observer. I feel that this will be the most helpful part of this process, most helpful for me I mean. I do not trust myself on this anymore. Christine, that part about differences in pretend play was enlightening. He can do structured pretend play. Not sure about coming up with his won stories - I do not think so, but how interesting how they test this. Same about shifting topics - I have to admit I find my kid almost always interesting so he does not have to do that with me so much. I could see the psych making a mental note when he did not stop counting after she had asked him to (she said she had wanted to see whther he could count to ten, managed to stop him at 70...)

I have to say that the psych wasn't so unprofessional to come right out and say "I think he's got this" - she just had the assistant bring in this social communication questionaire halfway through the consultation and I started reading it in and confronted her with "so you think he has Asperger's" (a little knowledge being a dangerous thing). This is what I wrote right after the consultation (it's good I happened to write this, I forget so easily):

We both agreed that there appears to be a massive spread between his socio-emotional and cognitive skills, that he has major trouble with understanding boundaries and other people’s needs and does not appear to understand his body in space. We did agree that he had some Aspergerish traits (he lectured quite a bit about planets and positively and negatively charges in clouds generating lightning, etc) and did have trouble sometimes relating to her questions.

She also asked how much of ourselves we recognized in him. I explained about periods of social isolation we’d both gone through as kids and when and how we had learned how to fit in (more or less!) as adolescents. And that I hoped DS might be spared those periods and develop better social skills now!

She does feel he might benefit from behavioural intervention and wants both his IQ tested and have him evaluated for Asperger’s to “understand where he is at cognitively and developmentally and to understand where his limits are, so we know what to target”.