Asperberger's diagnosis criteria?

[TerryJ2]

My son is 10 and is ODD and ADHD. He will be tested for Asperger's in April. He seems to have all the signs of Asperger's except that he's so social. I realize there is a spectrum, but does anyone here have suggestions for what to look for socially besides low tolerance for frustration, not a lot of eye contact, and inability to meet kids on his own unless someone introduces them first? The MD diagnosing him is a neurologist, and the child psychiatric warned us that if that's what he's looking for, that's likely what he'll find (aka a surgeon cuts, an infectious disease specialist looks for diseases...).

Chris has what I consider all the other signs... he did a major meltdown at the Rainforest Cafe' at Christmastime (although that place puts me in sensory overload, too)... he curled up on his chair, ducked his head between his knees and rocked. When he gets angry, he tears things into little bits (I try to encourage him to tear apart old phone books but I just came back from the bank, where I traded in two ones and a five that I had taped together). He is great a memorizing words and facts but has extreme difficulty weaving them into a cohesive whole, especially with-math word problems, and short stories. He takes things very literally and yells in anger if we say "that's not what I meant," although living in our household he has learned that we use a lot of cliches and slang so that helps.
He is addicted to computer games, the faster the better,especially PS2 etc., and has major meltdowns, almost psychotic, after he uses them. (It didn't take long to figure out that connection between the flashing lights and speed, and his inability to process the info.) We have completely taken away the computer and grounded him off of other kids' computers. He is allowed to do text work for school, and large drawings that he does by himself.
He is horrid at transition... if he's in the middle of something we have to give him several minutes to finish (God forbid if it's putting football cards in order and they fall on the floor!!!). If a playdate is canceled he goes through the roof.
We've done neurofeedback and a brain scan of sorts, (not an MRI... in this test you measure the output of electrical current). He is using mostly one section of his brain while the others are practically dormant, and his frontal lobes are overactive. (From the ADHD symptoms, I could have told you that, LOL!)

Because he was becoming so rude and violent, we completely cleaned out his room except for mattress and sheets. He has earned, by good behavior, blankets, his bookcase, lights, football cards, footballs, and a few books. I issue him clothes every day. Instead of freaking out, he calmed down and said he likes it that way! He said it's simpler and easier.

He is repeating 3rd grade.

The child psychiatric has helped us a lot but I think there's a piece of the puzzle missing. How does the dr. tell the difference between a collection of symptoms, and an actual disorder? I've been told they don't do brain scans, just interviews.

How were your kids tested? Were you satistfied with-the results?

 

[OTE]

As you said, an Aspie diagnosis is an art, not a science. For some kids it's very clearly Pervasive Developmental Disorder (PDD) but for others it's not so clear. Since there is no medication or other "cure" (and most Aspies don't want such a thing anyway), the point of diagnosis is only to help you and your child understand the thought patterns. With understanding you can help your child function within the limits society sets on us. Often you need the diagnosis to get services from schools, health insur and maybe something like daughter services. But don't focus on the diagnosis in the long term. Focus on how that label can help you and your child. eg having the diagnosis is not going to tell you why your child rages. It can point to possible reasons but it is not going to give you the reasons.

You've identified a number of reasons including transitions and sensory overload. Obviously you're working with the psychologist to help him develop better ways of responding to the feelings that he has when in these situations. And obviously with some of these issues it's a matter of developing a tolerance, so they build up a tolerance by increasing exposure. I can tell you that my Pervasive Developmental Disorder (PDD) kid doesn't have a problem with transitions because we worked on that for a period of years. Which is not to say that he doesn't have trouble giving up his obsessions but the general inability to transition is gone. The example you use of having a meltdown because his objects that are lined up are disarranged is a good one. Mine still gets upset at these things but recovers very quickly now. Again, it took time and finding ways he would accept to develop the tolerance. eg you might try getting a kitchen timer for him. When the cards fall on the floor get him (over time by doing it yourself at first and so forth) to set the timer for 10 minutes. Tell him by the time the timer rings the cards will be arranged again and work with him to pick them up and arrange them. It might also help to sing his favorite song, recite the alphabet, times tables or whatever sooths him while doing this. So he has both something that he can do in his head when in an upsetting situation (reciting or singing) and an anticipation that it will be right shortly. Didn't mean to go on but want to say that by doing things like this every time it happens he learns to do this himself and eventually will not have a serious reaction when it happens.

Same sort of thing with playdates. He develops the tolerance for change by anticipating a good time during that time, not the friend specifically. So when a friend cancels immediately go into Plan B which is that the two of you do something special that he really likes. He learns to associate special time vs specific friend and eventually will substitute something fun by himself.

The advantage of a Pervasive Developmental Disorder (PDD) class at school, a Pervasive Developmental Disorder (PDD) specific therapist, etc is that these people have a bag of tricks to help you with these things. And the younger you start the sooner these things will work. Since mine was identified young I can say that by 10 most of this was resolved. You're getting a later start but you'll get there.

Couple of other thoughts... the slight hyperlexia but inability to get concepts is typical. The teachers should be using the std Learning Disability (LD) techniques to work on it. Again, mine is 12 and we're finally starting to see progress with this now that he has a good teacher who understands Pervasive Developmental Disorder (PDD). The black and white and literal thinking is classic. What the child needs, and the social skills classes are the same is a list of rules, a lot of role playing. So make a list of those acronyms, slang, expressions, etc and put it on the wall in his room. When he hears one, instead of reacting he can go to the list to see what it means or remind you that it's one that hasn't been added and the two of you put it on the list. It becomes an academic exercise that the two of you engage in jointly, he is not left out, he's included. All of society's rules, walking up to someone and sticking out your hand and saying "Hi my name is x what's yours" is something that he practices as an academic exercise. Repetition is how he learns. It will never be natural to him but it will become his practice. My son and I for the last yr have been talking about strangers vs friends. He sees people as one or the other. School tells him that all kids are friends. So is a 16 or 18 yr old his friend? How do you teach him to know the difference? How does he know when a stranger has become a friend? So we're working on a set of rules. That's not easy for me but with enough organization and structure we'll get there.

eg about the clothes.. he's told you that it's less stressful for him to have rules for clothes, set outfits, only a couple of options. Given his penchant for organization this is classic. He's not going to understand what matches with what without written specific rules. So having all those options creates stress for him and stress leads to... So set up his clothes in his room, when he gets them back, in outfits rather than by type of clothes. All these little stress reduction things will help.

Loads of us here have Pervasive Developmental Disorder (PDD) kids so just tell us what you're having trouble with and we can offer suggestions.

 

[SuzyfromTexas]

Terry,

This topic hits close to home with me as well. I recently had a neuropsychologist evaluation and told our psychologist that I think my son (6 yrs. old) has aspergers. Well, turns out he does not qualify for the diagnosis.

He makes good eye contact and easily developed a rapport with the doctor (understood her jokes). However, some traits he does exhibit include easily frustrated, black and white/rule based thinking and is very dispresfectful mainly to me. He makes transitions fairly easily, however, lately he seems to be obsessed with maps (classic sign). Well, she tested him on the map thing and concluded that it's not pervasive. In other words, he can easily transition back to other activities without stress. He will also always choose playing with a playmate over maps. One other thing she tested him on was how inflection of speech changes the emotional meaning of a statement. Apparently this is difficult for some with Aspergers. (You can probably test him on this yourself).

Like many other Aspies he was reading at 3 and speaking a little earlier than most kids. I don't know if he had hyperlexia, but maybe. I try to test him on reading comprehension and he seems to get it, but at his young age who knows? Maybe he'll have problems when school gets harder. a

One thing the psychologist told me was that his verbal IQ (gifted range) was significantly higher than some other non-verbal tests (average - high average range). If the point difference is 20-25 then they classify them as NonVerbal Learning Disorder (NVLD) (Non Verbal Learning Disorder). Alex's difference was only about 14 but big enough to be significant.

Something else to look for is motor clumsiness. Does your son participate in sports and is he about average compared to other kids? Our psychiatric actually conducted tests on this in her office (both fine motor and major motor functioning). Alex's writing skills have always been a weakness but they are within normal limits.

Although Alex has not technically received a diagnosis, I sure seem to share a lot of the same problems as many of you on this board. Negotiation seems to help alot and avoid tantrums we may have had in the past.

 

[Fran]

Terry, my mommy meter always compared my difficult child to his peers socially. Watch how he reacts that is the same and is different. Keep some notes.
My son is extremely to overly outgoing and friendly. It is also a social shortcoming. He overwhelms peers with his enthusiasm and tendency to dominate the conversation with his interests.
The use of peers as a measuring stick helped me to be able to articulate to the physician what I was seeing that was a concern.

 

[DDD]

I have had two Psychiatrists say difficult child is high functioning AS
and two who have had said no way! The team which did the full evaluation independently, but at the expense of the school board, said absolutely NO AS because he conversed well and made eye contact etc.

The AS diagnosis seems to be one that is difficult to get but that parents can identify more easily than professionals
who only meet the child for a few hours.

Since there is no "cure" per se, I suppose what matters most
is getting the right support. It is frustrating. DDD

 

[WhyCantTheyUnderstand]

This sounds so very familiar. My difficult child is 6. Extremely social...he does have a tendency to scare off playmates because he gets too wound up. He has an odd gait when he walks or runs.

I've heard AS and NO AS...who knows...

 

[BusynMember]

I would take him to a neuropsychologist or a clinic with professionals who specialize in Autism Spectrum Disorders (ASD). It's easy to miss and CAN be debilitating. There are degrees of Asbpergers. Your son does sound pretty typical. Those who are very mild often pass and are never diagnosed. He has Autism Spectrum Disorders (ASD) symptoms so I'd insist on school interventions, even if he does well academically. Life skills and social skills are a must. Aspies are often dying to make friends, but have no idea how people think or what they want to hear or how to interact. Often they also have narrow interests and obsessions. Tony Attwood writes a lot of good books about Aspbergers, which is very often first diagnosed as ADHD/ODD.

My son has Pervasive Developmental Disorder (PDD)-not otherwise specified and appears to be social at school, but he's different at home. He has learned to "pass" but he is different, and his thinking is different. I see it more as a "difference" than a disorder, but it will probably affect his adult function. Kids who have autistic traits, but don't fit classical autism or Aspbergers are diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified. It took until my son was 11 to get the diagnosis. because of the same reasons--eye contact too good, too social, good sense of humor, no flat affect, blah, blah, blah. I knew he had it when he was two years old. I live with him and saw how different he is from his peers. He can hide it. The twelve hours of testing from the neuropsychologist was dead on.

 

['Chelle]

There are lots of good points you've already gotten in the other posts. Even before we got an official diagnosis of Pervasive Developmental Disorder (PDD), our difficult child's therapist worked with him in many ways on the basis that he was AS. From your post there are many indications of a possible AS diagnosis, and I think you should go with trying to get the appropriate interventions for these behaviors even if you don't or until you do get an official diagnosis. We got lucky and finally got 2 teachers who worked with us on that basis just before we got our difficult child's diagnosis, and it made quite a change in his behaviors at school.

 

[Marguerite]

OK, to touch on a little more - go to www.childbrain.com and do their informal Pervasive Developmental Disorder (PDD) questionnaire. Then take the printout to whoever he sees (organise a neuropsychologist referral if you need to) and get their opinion. Because it sure sounds familiar to me.

And grab a copy of "The Explosive Child" by Ross Greene. It works really well with these kids. Early Childhood has a good thread about the book too, if you want a preview.

difficult child 1 is Aspie, difficult child 3 is autistic. difficult child 1 used to withdraw a lot, especially if people paid too much attention to him or singled him out ("Go up the front and tell the class about what you did in the holidays" or "Stand on the chair so we can sing 'happy Birthday' to you"). He would curl up in a ball on the floor, literally for hours, until people went away and left him alone.

difficult child 3, on the other hand, was very sociable. He would go up to total strangers as if they were close family. He would give everybody he met a kiss and a hug. The feature here, though - it's not being antisocial, it's being socially inappropriate. Not knowing how close to stand to someone, not knowing that you don't try to hold the hand of another boy in your class because boys tend to not want their hands held by other boys.

difficult child 1 can't mentally multi-task. difficult child 3 can. Both are addicted to computer games. With both, we've had to control which games they played and at which time of the day, because sometimes they just couldn't cope with what the game did to their brain. This changes as they got older.

The biggest difference between them, though, and the diagnostic one - difficult child 1 had no language delay. difficult child 3 had significant language delay.

Now, difficult child 3 won't shut up. Because he's also hyperlexic, he talks like an encyclopedia. Example - we went to the beach with his godmother and a friend. Godmother drove us back to her house (a short walk from our home) and difficult child 3 left us at the door, to walk himself home. "I'll take my leave," he said as he left.

Some advice about computer games - give him access to games like Myst - the problem-solving ones that don't depend on speed. or computer mazes, or Sudoku. There are a lot of computer-based games that are also educational and fun. "Carmen Sandiego" is a good series - difficult child 3 especially learnt so much from that and he hadn't been learning it in class.

We now teach difficult child 3 by correspondence. He's now doing brilliantly, where before he was failing. The reason - all the work is in writing, he can read everything he needs to. We can give him peace and quiet, he chooses what he wants to do and for how long. Task-changing was a huge problem at school, but learning at home is less of a problem when he has control.
difficult child 3 refuses to do homework. But this week, although he's worked hard, he hasn't used his time as efficiently as he can, so I told him he is going to have to do extra time and have a 'study day' on the weekend to catch up. He's fine with that (amazing) because he wants to stay up to date with his work. But right now he's playing computer games. Our strict daily routine allows for gaming time. Free gaming stops at 7 pm. From 7 pm to 8.30 pm he MAY play games as long as it doesn't interfere with getting dinner or having his bath. The games must stop at 8.30 pm. He must be in bed by 9.30 pm (recently extended from 8.30 pm) and lights out by 10 pm. So from 8.30 pm to 10 pm he is encouraged to read a book. Reading books is a very new thing - until very recently he refused to read any narrative book that he hadn't previously read. This has meant that a hyperlexic, extremely bright kid with a vocabulary (now) years ahead of his age, would only read books aimed at 6 year olds (or younger). Or textbooks. Or comic books.

Keeping to the computer game and everything else routine has mean that the difficult children are coping much better with getting everything else done.

Also, something the psychologist put in place -

1) to change task (ie to send him to his bath when he is still gaming) - we stick a post-it note on the screen with the task and the time. He is told, "You have to have your bath. You have ten minutes, or the next save point, whichever is sooner." The note is to confirm that he HAS been told.

2) Any tantrums or refusals, and he loses privilege. The privilege is for every day he is meltdown-free and complies without fuss, he gets to play with me on a computer game, for half an hour.

We're actually having to re-evaluate that rule because he's been meltdown free for so long. But crikey, did it work!

You've set in place some really useful coping strategies for your son. You're already getting a good idea of his problems and needs. Always remember - they're bright, but in many ways much younger than their birthdate would indicate. They do get there eventually, but they need more time. And there are good points to having a kid like this. They're loyal; they try to comply (but need help in doing so); they're extremely focussed when they're working on something (they often won't even hear you, until you tap them on the shoulder and make eye contact) and they are very law-abiding, as a rule. Maybe it's their own laws, but routine is a good thing for them.

Good luck, I hope you get some answers soon.

Marg

 

[SRL]

In addition to taking a detailed developmental history, parent interview, teacher input, and doctor observation, specialists often use a diagnostic tool specifically for AS. A list of those can be found here: http://www.aspergersyndrome.org/

The most recent is the ASDS Asperger's Syndrome Diagnostic Scale and it is said to be highly reliable, when taken together with the rest of the data. My difficult child leaned close to an AS diagnosis when he was younger and was assessed by one of the co-authors of this instrument and it pegged him right where the developmental pediatrician called it previously and right where we felt he fit into the spectrum. It was one of the co-authors of the instrument administered it for my difficult child a few years later and they told me that the DSM criteria for AS really weren't very accurate because they're seeing far more variation than what the black and white criteria state.

Personally I think when parents are searching they have a harder time assessing the child’s social skills than in any other area so unless the delay/differences are very pronounced most parents go into an evaluation questioning this. I think many things factor in there: limited observation time of the child with peers, seeing a child who is social but not yet realizing the importance of social inappropriateness, parent having social difficulties themselves therefore not recognizing the child’s behaviors as unusual, having a child who truly is more social than the average AS kid, and so on.

One other thing worth mentioning is the importance of closely examining the child’s developmental history. Early developmental markers and behaviors yield very important clues and since some of those often fade away as the child develops and/or gets interventions it’s important to look for those when evaluating an older child.

My difficult child was evaluated by a developmental pediatrician which I think is the most preferable when a child is very young. If the waiting lists are too long (not uncommon to be 6+ months these days) or the child is older, then a pediatric neuropsychologist or an Autism Clinic are both good options. What I’m hearing about pediatric neurologists is that they are really hit or miss when it comes to Autism Spectrum Disorders (ASD)’s. Some are very good, some miss a lot, especially if the child is atypical or rides the fence diagnostically. A good place to check is with local parents of Autism Spectrum Disorders (ASD) kids, such as checking in with a local branch of the Autism Society. If you already have an appointment on the books certainly do keep it but if the findings don’t feel right in comparison to your research and if the recommendations on his/her report don’t seem like they’re going to be sufficient then you may want to consider pressing on.

 

[Allan-Matlem]

Hi,
Even if a kid does not fit the diagnosis , it does not mean that he does not have a problem in the area. I would do a situational analysis of masny of his interactions and try get the bigger picture , see how you could work to give him the skills, support , accomodations etc. in my humble opinion and that of Ross Greene diagnosis's don't tell you much . I prefer Greene's criterea of possible pathways - executive function skills deficits, social skills, language processing , emotional regulation skills, cognitive flexibility etc

Allan

 

[TerryJ2]

Thank you all!

I've gotten some really good ideas here. The Post It notes are a good idea. We use a timer a lot but I hadn't thought of using it for picking up his football cards. We use the microwave timer to get him to eat his applesauce (with-adderol sprinkled on it) within 3 min. Otherwise, it will take him 45 min. and we're always late! Sometimes I reward him with-a sip of Coke (for breakfast? whatever...). It's funny how timing something and rushing him is very stressful, unless he has a reward waiting, so it then becomes a fun, exciting stressor.

I printed out the diagnosis forms and bookmarked the links. Some of the behaviors we've addressed so they no longer apply to the checklist (i.e. weird sounds he made... I used to call them "Monster Noises" and he shrieked like crazy, but now he actually converses. Yay!) but some of the behaviors are still there. He shouts and insists he's not being loud. Sigh.

It's interesting to see how many behavoirs we've addressed by accident, i.e. interpreting others' behavior... one thing I did just for fun with-both my kids, was to "make the squirrels talk." We have a big picture window and I'd stand there with-both kids and watch the animals outside. When I'd see a squirrel (or 2) with-a nut, I'd say in a high, squeaky voice, "Ohh, what a good nut. I'm going to take it up the tree for lunch. I wonder if I should share with-this other squirrel or keep it for myself." If the squirrels got into a tussle it made it more amusing (and accurate if I guessed right) and I could continue the dialogue as they ran around the yard.
Now that I look back on it, what I did naturally because I'm goofy turned out to be a good teaching tool.

The teacher says that Chris has settled down a lot in reg. to knocking books on the floor, tapping, etc., but that he still gets overexcited and shouts out of turn. Hey, one thing at a time!

It's really hard sometimes to not get angry with-other people when they don't "get it." When Chris was in day care, they had very inappropriate age-related tasks. I.e. they'd line up all the 2-2/2 yr-olds with-crayons and coloring books after having them run around like mad, and expect them to color on demand. One morning, Chris and I colored at the kitchen table b4 I dropped him off. (I'm an artist so he gets a lot of that, although his drawing skills are at kindergarten level.) He arrived at day care and soon after, they lined up all the coloring books. He wasn't having any of it. Normally, he'd shriek at the top of his lungs, but this time he swept the book and crayons off the table with-his arm and yelled, "I already colored today!"
Now, I thought that great because he ACTUALLY USED WORDS!!! and that was b4 I had any name for what was "wrong" or "different" about him. I was just so proud that he used a real sentence that related to his activity.
But no, he got written up and they confronted me when I picked him up. (Obviously, I took him out of there!)

 

[tiredmommy]

Terry, I don't know if this will help or add to your confusion, but your post reminded me of the following article. It's not intended to be medical advice as it is an attempt by parents to put the DSM into layman's terms. It discusses Pervasive Developmental Disorder (PDD)-not otherwise specified and Aspergers:
http://www.bbbautism.com/diagnostics_psychobabble.htm

CUTTING THROUGH THE PSYCHOBABBLE:

DIAGNOSING AUTISM AND Pervasive Developmental Disorder (PDD)-not otherwise specified PER THE DSM-IV IN LAYMAN’S TERMS

This document was born out of confusion experienced by so many parents about the diagnosis of autism or Pervasive Developmental Disorder (PDD)-not otherwise specified. When comparing notes, we discovered that even our physicians did not agree. One woman told us her psychologist said that a diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified was reserved for children on the spectrum who are curable; others have been told that Pervasive Developmental Disorder (PDD)-not otherwise specified is not even on the spectrum! We found that many clinicians seem to take a milder diagnosis and simply label it Pervasive Developmental Disorder (PDD)-not otherwise specified.

This document takes the DSM-IV criteria for autism and Pervasive Developmental Disorder (PDD)-not otherwise specified and translates it into English. It also attempts to clarify how a diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified is made. Please note that not all symptoms may not be present every day. Look at typically developing children of same age (peers) and use them as markers. This document is certainly not a diagnostic tool; it was created by and for parents.

To make this easy, (1), (2), (3) are categories, the letters (a), (b); etc that appear under each category will be referred to as symptoms.

DSM-IV Criteria for Autism

299.00 Autism

A. To be diagnosed with autism, you must have:

o At least SIX (6) of the below symptoms from categories (1), (2) and (3).

o You must have TWO (2) symptoms from (1- Social)

o And ONE (1) each from (2- Communication) and (3 Behaviors and Interests)

o The other one (or more) can be from any of the categories.

(1) SOCIAL

Social interaction is impaired, must have TWO from below list of symptoms:

(a) Problems with nonverbal behaviors such as eye contact, facial expression, body postures and gestures used in social situations

Examples:

o Eye contact – different from peers, may only meet eye-gaze of certain people or have total lack of eye contact – or anything in between

o Facial expression – may seem inappropriate to what the situation warrants, may have blank gaze, may not greet you with a smile, may have same expression on face most of time – or any combination thereof

o Body Postures – may hold arms close to sides, may try to avoid certain types of social contact, may appear unapproachable due to posture

o Gestures – may not respond to a hand held out to shake hands, arms out for hugs etc. May not understand social ‘cues’ we take for granted

(b) Does not make friends like other children in same age group.

Examples:

o While peers are learning to play together, the child is off by themselves

o Children learn to play by imitation, this child is not imitating the other kids

o Seems to have no interesting in socializing with peers

o May approach peers, but not to play…watch and see if the child is approaching in the same way peers approach each other

(c) Does not share objects with others for enjoyment.

Examples:

o Does not bring you something that interests them to share with you

o Does not point in the distance (i.e. to an airplane) to share with you something that interests them

o Look at peers and how they show things they are proud of (ie. Artwork) and see if child does the same thing

(d) Lack of social (Consisting in dealings or communications with others) and emotional (characterized by emotion) ‘give and take’; Does not respond to social or emotional cues

Examples:

o Does not seem to seek out or enjoy the company of others; may be aloof

o Does not smile back when you smile at him/her (without prompting)

o Does not reply “hello” to your greeting (without prompting)

o Does not seem especially happy to see you when you return home after work

o Does not seem to pick up on the ‘vibes’ of others

o Does not become grateful or excited in anticipation of outing or gift (in the same way a peer would)

o Does not attempt to comfort someone who is crying

(2) COMMUNICATION

Communication difficulties (Must have at least ONE of the below symptoms):

(a) Delay in, or total lack of, speech, but does not use gestures to communicate (Delay = not at same level as peers)

Example:

o Does not point to what s/he wants

o Does not ‘mime’ his/her needs (ie. Mime ‘eating’ if hungry)

o Does not shake or nod head for ‘no’ or ‘yes’

o Does not shrug shoulders to show s/he ‘doesn’t know’

(b) If child can speak, cannot start or hold up their end of a conversation (appropriately)

(c) May echo phrases, words, songs, parts of movies etc.

(d) Does not engage in imaginative play (as peers)

Examples:

o Will not pretend to drink from toy teacup

o Will not pretend to brush doll’s hair

o Will not use items for make belief (i.e. a stick for a cane or a magic wand)

o Will not make dolls ‘talk’ to each other

o Will not take a toy airplane and ‘fly’ it around the room while saying ‘zoom’

(3) BEHAVIORS AND INTERESTS

Repetitive behaviors, interests, and activities – child may get angry if this ‘pattern’ is interrupted. Must have at least ONE of the below symptoms:

(a) Child is so focused on an interest that to remove the interest will result in a meltdown

(b) Routines or rituals must be followed, they appear to have no function

Examples:

o Lining up cars is not necessarily playing ‘garage’; if you attempt to join in, the child will tantrum, walk away, push you aside, etc.

o Family members must always sit in same seats; failure may result in tantrum

o Must take same route home; one deviation may cause meltdown

o Must wear red shirt on Tuesday or risk a tantrum etc

o If you go to the video store, you must rent “The Brave Little Toaster” every time or risk a tantrum

(c) Repetitive behavior such as hand flapping, rocking, ear flicking, chewing on clothing, vocal ‘stims’, spinning etc. Establish if this is self-stimulatory by doing a functional assessment like the Durand Motivational Assessment Scale: http://www.monacoassociates.com/mas/MAS.html

(d) Preoccupied with parts of objects

Examples:

o Spins wheels of toy cars

o Focus on one part of a toy (i.e. doll’s eyes)

o Cover parts of book so that s/he can look at one piece

B. Child is either delayed (not same ‘age’ as peers) or acts differently from peers in ONE of the following (must be noticeable before age three): (1) social interaction, (2) language as used in social communication, or (3) pretend play.

C. Child does NOT have Rett’s or Childhood Disintegrative Disorder

299.80 Pervasive Developmental Disorder, Not Otherwise Specified

Pervasive Developmental Disorder (PDD)-not otherwise specified is a diagnosis by exclusion. If a child presents with some symptoms from (1), (2), and/or (3), and their pattern of symptoms is not better described by one of the other Pervasive Developmental Disorder (PDD) diagnoses (i.e., Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, or Childhood Disintegrative disorder) then a professional might decide that a diagnoses of Pervasive Developmental Disorder (PDD)-not otherwise specified is warranted.

When comparing Pervasive Developmental Disorder (PDD)-not otherwise specified to Autism, Pervasive Developmental Disorder (PDD)-not otherwise specified is used when a child has symptoms of autism as above, but not in the configuration needed for an autism diagnosis. Social component is where the most impairment is seen. Children who fail to meet criteria for autism and don’t have adequate social impairment typically have a developmental disability, and their symptoms can by accounted for by that.

Looking at above description:
“299.00 Autism - To be diagnosed with autism, you must have at least 6 of the below symptoms from (1), (2) and (3). You must have two symptoms from (1) and one each from (2) and (3) – the other two can be any of the other symptoms.”

Pervasive Developmental Disorder (PDD)-not otherwise specified is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3). A child with Pervasive Developmental Disorder (PDD)-not otherwise specified may have the same (or more, or less) number of symptoms as a child with autism, but instead of having 2 from #1 and one each from #2, the child might have 1 symptom from #1 and one from #2, plus two from #3.

A diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified is not necessarily a less-severe one than a diagnosis of autism, but can be sometimes.

Severity of any spectrum disorder can be determined by the amount and severity of symptoms listed above.

It is imperative to obtain a thorough psychological assessment performed. If you do not understand during any part of the assessment, ask questions. You should feel comfortable to go home and ‘digest’ the information given to you, form any questions or concerns and contact the diagnosing clinician to get your answers.

Many thanks go out to R.C. for her help with this project!



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[Marguerite]

Terry, we've 'lucked out' too, with some of the things we did. It's what parents do, trying to reach their child. And when you can't get through one way, you get through another.

So it sounds like he had language delay also. Did he have the jargon speech at all? easy child 2/difficult child 2 described this as "talking in scribble". And echolalia - he would repeat the question, rather than answer it. we had to formally teach him to listen to the question and turn it into an answer, but for a long time he just didn't have the language skills to interpret the question. To begin with, we 'programmed' him, using social stories, so when asked "What is your name?" he could answer it. But if someone asked, "What do people call you?" he wouldn't understand. We had him programmed with his name, my mobile phone number and our address. But we just had to hope that people would use the right words to ask the question. The hopeful thing was, most people when faced with a non-responsive child will ask the same question again, in different ways. Eventually, we hoped, they'd ask the question he would recognise.

Looking back on it, we now realise that he had memorised some quite long sequences of meaningless syllables and had connected them to a pre-programmed response. This was an amazing feat of memory. he also would memorise songs from the radio, often including more obvious musical effects as part of the sequence of sounds. He would know the entire song, all the verses and often a lot of the incidental sounds and would sing then, over and over, in the car. he would sing along if they came on the radio. But the words often had a 'blurred' sound to them, as you would her in a child singing a song in another language which they do not speak.

Now, the difference is amazing. It was some years ago that the school counsellor (idiot woman) said to me, "Look at difficult child 3 and how well he fits in now! And his speech has improved so much, he no longer has language delay. He's no longer autistic!"
Um, yes he is. HISTORY of language delay is part of the criteria. As difficult child 3 described it himself when he was 8 years old, "I'm getting better at pretending to be normal."

The noises - they may not have totally gone away. However, if/when they return, they are likely to be quieter. HE knows he is not normal; HE knows that he needs to moderate his behaviour to make it more acceptable. His has certain drives and obsessions but he is trying all the time to moderate these in order to please people and 'pretend to be normal'. A lot of these stims are a coping mechanism, like a safety valve. Tapping pencils, some fidgety movements, some habits are hard to change and if you succeed in squashing one, another may surface. Sometimes you have to live with the ones you feel you can best tolerate.

difficult child 3 has a funny noise at the moment, he's had it for about three years now. It's a sort of quiet groan. difficult child 1 never had this noise; instead, he had one that sounds for all the world like a male emu calling its chicks. It's a sort of throaty 'boom' noise, but very quiet. Like a backward swallowing noise or gulp. he may have even acquired it from trying to imitate the emu, but couldn't stop. He was even annoying himself with it. We would walk past his room and hear it outside the door - it wasn't an attention thing, just a habit he couldn't stop.

difficult child 3's autistic friend has a nose twitch, almost like Sam in Bewitched. It's not quite the same and it's not related to copying anything. He's not even aware that he does it. His nose twitches more when he's working on his schoolwork. difficult child 3's noise is most noticeable when he's stressed or concentrating on his schoolwork.

Our kids are all different. They don't all have the same range of symptoms or to the same degree. Some are normal in some respects (in that they don't have all the signs listed). As a result, kids like your son and my difficult child 3 love being around other kids. But they don't relate to them in normal ways.

Sorry to use the word 'normal' but here, I mean it "like other kids, at the same level, appropriately for age and social situation". These are things that are more difficult for our kids to achieve. They CAn learn these skills but it takes time. And the impulsive calling out - it's much harder to fix that one that you would think. It's best to keep gently correcting, but punishment WILL NOT WORK. It will only cause more problems if you try to punish something that the child has little control over. They already KNOW they shouldn't, but try to stop? They just can't. We just keep correcting, keep reminding, he's slowly getting there...

Marg

 

[TerryJ2]

"I'm getting better at pretending to be normal."

Ohhhhh! Makes me want to hug him.

Can't believe that counselor really said that-- he's no longer autistic--arrgh!

How do they get their jobs?

TiredMommy, thank you for that list. Chris is right on the border for some of those. He's always right in the middle. No clear pattern. It's very frustrating. It's not like I WANT him to have something, it's just that it would make life easier.

It's possible it's a Pervasive Developmental Disorder (PDD) and not Aspberger's... but the child psychiatric is always telling him, "Eyeballs," when he wants his attention. Little things like that add up. How do you know when it's just a kid who doesn't want to confront, or when they CAN'T? I suggested to the child psychiatric that we take Chris to a neurologist and he said he'd give it some more thought... especially when I told him about tearing up phonebooks, and rocking and crying at the Rainforest Cafe.
It's so hard when you only see the kid for 50 min. every 3 wks.
Sigh.

Chris DOES come up and show me things he's excited about, but that' something new that he's only done this year. (He's 10.) When he was little he always separated himself from his peers at birthday parties and we had quite a to-do about it, since I thought he was just being ill-mannered. (If I could only go back in time... sigh.)

Thank you all.

 

[SRL]

The developmental pediatrician that first evaluated my difficult child included in his report an account of difficult child's autistic traits as well as the scores on the diagnostic tests that showed he didn't meet the criteria. But he also made it clear that his issues leaned in the direction of Autism. A diagnostician who understands Autism Spectrum Disorders (ASD)'s will recognize kids who are on the fence diagnostically and will communicate this to the schools in a way they will likely qualify for services. Ours went so far as to say if we had trouble with the school getting needed services, he'd adjust the diagnosis to the generic Pervasive Developmental Disorder (PDD)-not otherwise specified since there was sufficient evidence.

If the diagnosis is questionable, then I don't think a neurologist is the best specialist to visit unless you've heard they are skilled in the area of pediatric Autism Spectrum Disorders (ASD) evaluation. Also, your psychiatric shouldn't be the one making the call whether you schedule with another specialist--that's often equivalent to them admitting that they don't know what's going on/can't handle it and a lot of specialists won't do that. You're the parent, if you feel there is reason to further pursue an evaluation, then take the steps to do so either directly or through your pediatrician.

 

[SuzyfromTexas]

Tired Mommy and SRL and to all others on this thread,

This info has been so valuable to me. It has made me rethink that more testing needs to be done with an Autism Spectrum Disorders (ASD) specialist. My son has been evaluated (6-7 hours of testing) but no diagnosis given other than exhibits some characteristics of NonVerbal Learning Disorder (NVLD).

My problem is that I don't know if I should involve the school or not. He does very well in a school setting and the teacher does not notice any differences. (I know that doesn't mean that there aren't differences, just not obvious to her.) My dilemma is that I don't want to ignore problems he might have, but don't know if involving the school would be benefical at all. Anyone have any thoughts on this? I want to give him all the support he needs early on, but don't want to make a big issue out of it in case that might somehow single him out as different and make it worse.

Another problem I have is that my husband thinks we need to let this drop. In his mind, he's been evaluated, he's fine, end of story.

Anyway, there is a lot more subtlety to this issue than first meets the eye.

 

[smallworld]

Suzy, I don't have a child with Autism Spectrum Disorders (ASD) -- just 3 with mood issues -- but I personally would want an accurate diagnosis that would lead to putting the proper interventions into place. I know that some Autism Spectrum Disorders (ASD) interventions can be done privately (or at school or both), such as speech, Occupational Therapist (OT), social skills, etc. I also know that we have been very forthcoming with our kids' schools because our kids spend a good chunk of their day at school and then have homework that comes from the school.

My kids are bright and high-performing students. We have been told by numerous teachers, "If you hadn't told me there was an issue, I never would have known." But that doesn't mean the issues don't exist. And foruntately, we have found that informing the schools about the mood issues makes the teachers more sensitive to our kids.

Just this morning, I met with easy child's teacher and the school counselor about a spike in easy child's anxiety that was leading to some school refusal. We came up with a plan to ease easy child's anxiety, and then the counselor brought easy child into the room and talked to her. I'm feeling very upbeat that the school worked with us as a team to solve this problem.

What do you think will happen if you involve your son's school?

 

[SuzyfromTexas]

What do you think will happen if you involve your son's school?

Well, I'm not sure....Maybe I don't want him treated differently than the other kids. As he gets older maybe it will be beneficial to let the school know things. As it stands now, I don't have a diagnosis, but I could still inform the school of the strengths and weaknesses outlined in the neuropsychologist evaluation.

I'm not sure that they have any type of interventions. I don't think speech or Occupational Therapist (OT) is an issue, but maybe social skills training would be helpful.

I guess I don't want him labeled if it isn't necessary.

 

[SRL]

Suzy I would also want an accurate diagnosis. Your child may be doing very well today and make a 180 degree turn. It happened to my difficult child when he made the transition from K to 1st. He needed a major increase in services, adaptations, etc. and we would have been at ground zero without a diagnosis, recommendations via reports from specialists, him having already qualified, etc. But because we knew all that had to happen is bumping up minimal services several notches.

One other thing you will want to look into if NLD traits are present. NLD kids frequently get through grade school and totally fall apart when they hit middle school. In fact, that's the age when many of them get their diagnosis because suddenly the setting makes the difference between functioning vs. non-functioning. The new environment, increased social and academic needs really throw them for a curve.