*UPDATE* Weeding out the "quirks".. - what is pertinent to an ASD dx? *UPDATE*

[WindyCityMom]

ETA: When I wrote this I was thinking we'd be looking at an ASD dx.  But the more I look at it, I'm not so sure.  I'm not sure about anything.  I just need some outside insight into the situation, please.

I've been trying to compile a list of DD1's "quirks" and things. She's 4.  Last year she had an eval with a developmental ped and an OT.  They complied a report and said that she has motor planning delays, hypotonia, and sensory processing disorder with sensory aversions.  Said that Aspergers was a great possibility but she was too young to make a diagnosis.  Said the'd send her to a playgroup therapy thing for her social issues and there were OTs in it to help.  We were put on a waiting list, but they called me back last week and asked if I was still interested in receiving services for her. 

A lot has changed so I'm going to request a repeat evaluation.  The issues that DD had before (that are still prevalent are):

-Social anxiety- it has gotten better, she used to completely shut down.  She rarely "shuts down" completely now, but the social anxiety is still very hard for her.

-Easily "overloads" from sensory input- noise, a lot going on for her visually, etc.  Cleaning up a mess  is extremely difficult for her.  
-Sensitive to being "dirty", wipes her hands continuously during meals
-VERY sensitive to water (this has gotten exponentially worse).

-Containerizes everything- puts things in boxes, bins, purses, etc. for no rhyme or reason, so no pretend play when she does it.

-Dermatillomania- she has flare ups and skin-picks until she bleeds.

-Poor motor planning, so she's extremely clumsy and has poor balance
-Hypotonia, mild, but enough to cause struggle in our daily lives, both hers and ours.

-Spotty eye contact when talking to someone.  Oddly enough, she is great at conversation, just will rarely look you in the eye.

New things:

-Control issues.  She has HUGE control issues when playing with her sister or other children (just a few family-kids, she won't talk to anyone else).  She is bossy, demanding, and will have a meltdown if things do not go just "as so".  She manipulates her sister into doing what she wants her to do.  Today I was folding laundry in my bedroom and heard my 2yo crying.  My 4yo had coaxed her into licking hot sauce off a plate and was trying to get her to do it again. :(  4yo was holding the hot sauce bottle when I caught her, and was verbally encouraging 2yo to do it again.
Tattling is major but I think that's just her being 4.

-Mood issues... she seems to cycle through periods where she's okay, and periods where she's a terror.  When she's in the latter "cycle", she's angry, irritable, even more bossy and demanding, and her control issues are way off the handle.  She gets extremely talkative and lies a lot.

- The meltdowns.  They are sheer torture for me as a parent.  She has self-injurious meltdowns, and she has hit her head a few times on doorframes and furniture because it's like suddenly she can't control her body.  I have to sit with her cross legged and hold her down until she is mostly calmed, because she is a threat to herself and others (she has hit myself and her sister during the meltdowns, thrown objects, etc).  I feel terrible because she seems like she fears me when I have to hold her still (she yells that I'm hurting her, but she also yells that I'm hurting her when I want to hold her hand crossing the street, no matter how gentle my grip).  Rambling...
- Echolalia.  This is something that set off red flags in my head recently.  She always repeats what I say (usually the last word in the sentence), in question form.  "N, please clean up your mess."  "Mess?" .  "Daddy is at work."  "Work?" "Would you like to eat?"  "Eat?".  "Mama's back hurts."  "Back hurts?".  She does it all the time.  Not every time, but much of the time.  It is very annoying which is what prompted me to google, and google took me to a PDDNOS checklist so I figured I may as well add it in as one of her "quirks" and see if it holds any value in the diagnostic process.
-She is fascinated by death, of all things.  We live across the street from a church, so she frequently sees funerals.  She was full of questions about death at first.. now she seems to get excited when she sees a hearse out front and will talk endlessly about it   I guess it may be my upbringing, but it seems very morbid and it just freaks me out that she's so into it.  

A lot of what DD does worries me.  I know we need this eval and I want to go in more prepared than last time.  I feel like if I were more prepared then, we wouldn't be in this position.  If anyone has any insight into anything I mentioned, or can offer advice in any way, please do.  

Edited by WindyCityMom - 3/22/12 at 2:34pm

[HarperRose]

Sounds like ASD to me. I'm not entirely sure what sort of input you're looking for, but if you have more direct questions, let me know. I'm happy to offer my point of view. :)

[joensally]

Would a PDD-NOS diagnosis get you access to services?  It's commonly used to identify a child who is believed to be on the spectrum but it's not yet been determined where exactly on the spectrum.

In the last eval, did they use standardized assessment tools, including direct observation and interaction with your DD?  And do you understand which diagnostic labels get you which types and amounts of services in your jurisdiction?

[WindyCityMom]

I'm not looking at PDDNOS, but google led me to that checklist which is why I thought that the particular symptom would be relevant to a doctor trying to diagnose.  The developmental center we went to has a focus on ASDs, but deals with behavioral and psychological issues in children as well.  They do speech therapy, occupational therapy, and physical therapy.  AFAIK, they diagnose things that can be treated at their facility and will put you on a waiting list according to how severe the issues are.

The first eval was with a developmental ped.  He tried to talk to her, but she wouldn't respond.  His assistant took her in the hall to watch her run and walk and witnessed her shutting down when she would walk past a doorway, as well as her motor planning and low tone issues.  All of HIS findings were based on what I told him, really.  He then sent us to an eval with an OT at a later date.  The OT did a full on eval of her gross and fine motor skills, and touched on the anxiety things.  (She had her try and climb ladders, cut with scissors, jump on things, play, simple puzzles, drawing, etc).  

HarperRose, I guess I'm looking for anything that may be typical 4yo stuff and not be pertinent to a diagnosis.  I feel like my list of symptoms last time around was too long for the doc to weed through.  The OT really focused on her motor planning, which was great, but I'd take poor motor planning skill over her behavioral issues any day.  I used to think she fit an ASD dx to a tee.  Now, I'm not so sure.. she doesn't have the lining up obsessions or the physical stimming, she never toe-walked... but then again, ASDs are complex and symptoms can vary.  And knowing that, I feel so lost in wanting some sort of diagnosis because things are just SO different for each child- and how could one blanket diagnosis fit her?  I know that therapy is tailored to each child's needs.. but still.

My husband thinks she's bipolar because of her episodes of rage and her need to control situations.  But even though she goes through cycles, they don't seem regular to me at all, and shouldn't they with bipolar disorder?  I guess I don't know much about it.  I just really need to get another professional opinion for her :(

[HarperRose]

Bipolar definitely has a specific pattern. I was dx'd as bipolar but it has no regularity like my parents' bipolar episodes. For me, it's inability to adequately monitor my emotions. That is probably the case for your girl.

I have a neurotypical 4 yr old, myself, and he is not like what you've described your daughter as. Re-reading your list, he's, like, the complete opposite of what you face with your daughter. He does not have meltdowns. He'll be mad about something and throw a little bit of a fit, but it's not anything like what his older brother has done. Also, your daughter's symptom list is VERY MUCH like my aspie's list at that age.

Comparing my 2 boys is like comparing night and day. Just because they're both male doesn't man a damn thing. They couldn't be more different.

You should definitely look into having her evaluated because she certainly seems like she may be on the spectrum somewhere.

as for toe walking - I toe walk, but my 11 yr old doesn't. My friend/roomie doesn't. My friend paces, I pace, but my son doesn't. You see where I'm going with that? It's the overall picture you want to focus on, not the individual details.

[WindyCityMom]

That helped a lot, thank you!  

I guess I'm worried we'll be stuck on a long waiting list again.  She's not "textbook every symptom ASD", but I guess I just need to remember... just about no ASD kids are textbook perfect ASD to the tee..  and the doctors are trained to look at complex cases, and have seen worse and more complex.  I think I need to stop worrying and trust.    

[zebra15]

Can you take the playgroup spot, and continue with another assessment of your DD?  In the playgroup you will have a couple sets of professional eyes on DD and eventually opinions of her that should help.  What are you trying to accomplish with a formal DX at this point?  Have you tried anything along the lines of family therapy and child play therapy to see if DD is just 'quirky' and this is something you as parents need to learn how to manage and react to?

[WindyCityMom]

Originally Posted by zebra15 

Can you take the playgroup spot, and continue with another assessment of your DD?  In the playgroup you will have a couple sets of professional eyes on DD and eventually opinions of her that should help.  What are you trying to accomplish with a formal DX at this point?  Have you tried anything along the lines of family therapy and child play therapy to see if DD is just 'quirky' and this is something you as parents need to learn how to manage and react to?

That is the plan for now, though I'm still waiting on a call back.  I am going to call again tomorrow.  It was the OT herself who called me directly, so not a blanket office number, which is good.

I can't afford any type of family therapy.  We receive medicaid and I am relying on them to figure out a formal DX to get DD the services she needs.  Some things DD does are quirky.  Over-interested in death is quirky, I guess.  Social anxiety could be, I guess.  But self-injurious meltdowns (and what they entail) , hurting others, and her actual physical issues are not... I wish they were, and if I had the tools to deal with it I would.  I love this forum but there is only so much help I can get... I've come here so many times looking for advice.. every day I struggle with DD and I just want to get HER help.

[Linda on the move]

Originally Posted by WindyCityMom 

 I know we need this eval and I want to go in more prepared than last time.  I feel like if I were more prepared then, we wouldn't be in this position.  If anyone has any insight into anything I mentioned, or can offer advice in any way, please do.  

My insight is that you can stop beating yourself up for not being more prepared last time and thinking that your level of preparedness has had any impact on your current situation. 

My kid has had more than one eval. Most kids with something significant going on have. My DD will most likely end up with anther in a year or two to help prepare for college, because in spite of being on the autism spectrum, she is college material and I'm going to make sure she gets the accommodations she needs to be successful there!  (so for the off topic brag)

Any way -- your DD has flags, as your know. They will change and morph over time. How serious her quirks seem more vary with how well she can adapt to the expectations of our culture for a child her age.

No matter how many evals you get, from time to time you will most likely feel like you are being thrown for a loop, because no matter how many experts and parents you talk to, every kid is different. That's true for all kids, but is MORE true for our kids.

For me, a big part of being a sn parent  has been learning to make peace with the unknown. I agree with the others that taking the spot in the developmental preschool is a good idea. Whatever the exact labels used for your DD, it sounds like it could be helpful for her.

Peace

[joensally]

Originally Posted by WindyCityMom 

I'm not looking at PDDNOS, but google led me to that checklist which is why I thought that the particular symptom would be relevant to a doctor trying to diagnose.  The developmental center we went to has a focus on ASDs, but deals with behavioral and psychological issues in children as well.  They do speech therapy, occupational therapy, and physical therapy.  AFAIK, they diagnose things that can be treated at their facility and will put you on a waiting list according to how severe the issues are.

The first eval was with a developmental ped.  He tried to talk to her, but she wouldn't respond.  His assistant took her in the hall to watch her run and walk and witnessed her shutting down when she would walk past a doorway, as well as her motor planning and low tone issues.  All of HIS findings were based on what I told him, really.  He then sent us to an eval with an OT at a later date.  The OT did a full on eval of her gross and fine motor skills, and touched on the anxiety things.  (She had her try and climb ladders, cut with scissors, jump on things, play, simple puzzles, drawing, etc).  

HarperRose, I guess I'm looking for anything that may be typical 4yo stuff and not be pertinent to a diagnosis.  I feel like my list of symptoms last time around was too long for the doc to weed through.  The OT really focused on her motor planning, which was great, but I'd take poor motor planning skill over her behavioral issues any day.  I used to think she fit an ASD dx to a tee.  Now, I'm not so sure.. she doesn't have the lining up obsessions or the physical stimming, she never toe-walked... but then again, ASDs are complex and symptoms can vary.  And knowing that, I feel so lost in wanting some sort of diagnosis because things are just SO different for each child- and how could one blanket diagnosis fit her?  I know that therapy is tailored to each child's needs.. but still.

My husband thinks she's bipolar because of her episodes of rage and her need to control situations.  But even though she goes through cycles, they don't seem regular to me at all, and shouldn't they with bipolar disorder?  I guess I don't know much about it.  I just really need to get another professional opinion for her :(

PDD-NOS is an ASD.  It refers to Pervasive Developmental Disorders (of which Asperger's is one) - Not Otherwise Specified.  Different places employ different strategies, but in many places a PDD-NOS diagnosis will make a child eligible for services.  Many kids start out with a PDD-NOS diagnosis and later end up with an Asperger's or other PDD diagnosis.  It's very difficult to definitively diagnose a 4 year old because many diagnoses share behavioural manifestations, and some of the behaviours may simply be developmental and the child will age out of them.

The standard diagnostic tools used in most of North America is the ADOS and ADIR.  Ask that they use that, or an equivalent, rather than an observe and report assessment if that's the way to accessing more services.

What you describe does sound like an ASD.  Have you looked at the actual DSM criteria?  I recommend the Oasis Asperger's book as it contains good, concrete examples of how it can look IRL.

Bipolar now has sub-types in it's diagnostic criteria, so regular cycles is not necessary for the diagnosis.  However, a kid with an ASD and sensory issues may rage and need to control situations as a response to their sensory and sensitivity issues.  In fact, raging and needing to control situations are kind of textbook responses to sensory over-stimulation.

Some of what you describe is typical four year old stuff, as four year olds are mercurial.  But it's a matter of degree, and you also list some distinct flags.

And I agree with Linda, don't beat yourself up about the past evaluation.  The process is confusing and overwhelming. 

[cristeen]

The almost 4 yo NT girl that I know sounds almost exactly like the "new" things on your list.  Bossy, tantrums, mood swings.  The tantrums aren't usually self-harming, but she definitely has plenty of big ones. Alone, those things wouldn't raise flags for me.  Self-injury does raise a flag though, as do "obsessions", although at the same time an obsession with death is not outside the realm of normal behavior, although usually occurring more in kids who have had to deal with the death of a close relative. 

Not sure that what you're describing would qualify as echolallia though - sounds like normal irritating child speech pattern. 

I would ask for a different type of eval.  Maybe one aimed at a younger (non-verbal) child, since you know she has anxiety issues.  We did DS' evals when he was 24-26 mos, all symptoms and "concerns" were reported by me, but they also had him playing with toys and observing his responses/actions while the doctor asked me this huge list of questions.  It was kinda like a directed play group - they'd hand him a toy and see what he did with it.  I don't recall them really trying to talk to him at all, other than encouraging him to try tasks.  Our first eval was with a developmental ped and a developmental psych, and they recommended the ASD eval, which was with a specialist who only deals with ASD.  And she did make it very clear that in the 10 years she'd been evaling kids, she'd never seen 2 ASD kids with the same set of symptoms.

HTH

[WindyCityMom]

Thanks eVeryne! This is all so confusing.

Could be 4 year old stuff, but she is also extremely rude.  Like the tone of her voice and the way she demands things.  She knows that "please" is polite (and despite what I know I have had to stress it to her so she doesn't sound ungrateful to others... Which is probably wrong of me...) and she will say please if we ask her to be more polite, but it is more of her just tacking on the word at the beginning of the same demanding sentence she had just said.

My husband and I are polite to each other and our kids.  My 2yo who was a little late to talk and has limited speech skills has picked up on how to be polite when she wants someone to do something for her. My 4yo still seems oblivious but it could be just her being 4.  I know that kids with asds sometimes do not pick up on social cues or jokes, but my dd DOES even make her own jokes. Shes not oblivious to humor.  Again, I'm left confused, lol.

[Tjej]

Is the repeating something that could be called "perserverate"?  I have been reading some stuff about anxiety and different diagonses, and I came across that word and it really struck a chord with me.  Repeating things in an unusual way. 

http://en.wikipedia.org/wiki/Perseveration  Although that doesn't really explain it as well as the book I was reading.

Tjej

[cristeen]

Originally Posted by WindyCityMom 
Could be 4 year old stuff, but she is also extremely rude.  Like the tone of her voice and the way she demands things.  She knows that "please" is polite (and despite what I know I have had to stress it to her so she doesn't sound ungrateful to others... Which is probably wrong of me...) and she will say please if we ask her to be more polite, but it is more of her just tacking on the word at the beginning of the same demanding sentence she had just said.

My husband and I are polite to each other and our kids.  My 2yo who was a little late to talk and has limited speech skills has picked up on how to be polite when she wants someone to do something for her. My 4yo still seems oblivious but it could be just her being 4.

Again, something I'd chalk up to being 4.  That is completely a typical behavior. 

Something I'm having to constantly remind my DH about right now - most small children do not have a shred of empathy.  They are selfish creatures, they want what they want when they want it (i.e. RIGHT NOW!), and they don't care what conversations they interrupt, whether mommy is busy, whether or not they're being polite in their demands, or whether they're hurting someone's feelings.  And by 4, they're at an age where many of them are starting to resent the "structure" of society that has been imposed upon them, because they feel like it shouldn't apply to them (not that they'd ever be able to put it into so many words).  Which is why you might get the grudging "please" or "thank you" when reminded, but it's obvious they don't actually mean it. 

Obviously, some kids skip that phase.  And some kids are naturally empathetic.  But most kids are far more interested in what they want than in the social niceties, and that is completely normal. 

[Emmeline II]

Originally Posted by WindyCityMom 

Thanks eVeryne! This is all so confusing.

Could be 4 year old stuff, but she is also extremely rude.  Like the tone of her voice and the way she demands things.  She knows that "please" is polite (and despite what I know I have had to stress it to her so she doesn't sound ungrateful to others... Which is probably wrong of me...) and she will say please if we ask her to be more polite, but it is more of her just tacking on the word at the beginning of the same demanding sentence she had just said.

My husband and I are polite to each other and our kids.  My 2yo who was a little late to talk and has limited speech skills has picked up on how to be polite when she wants someone to do something for her. My 4yo still seems oblivious but it could be just her being 4.  I know that kids with asds sometimes do not pick up on social cues or jokes, but my dd DOES even make her own jokes. Shes not oblivious to humor.  Again, I'm left confused, lol.

I agree with pp that it is typical 4yo behavior and it can also be ASD behavior. My dd was naturally empathetic at 2yo but 3.5 to 4yo was up and down. 4yo was a really difficult age for both children (you can also find threads about this on the Childhood Years board with good suggestions). Ds (ADHD/ASD) started demonstrating more empathy towards the end of 1st grade--his teacher helped a lot with this.

Sometimes it helps to demonstrate the behavior in an exaggerated way--when mine were dropping "please" and "thank you" a lot I "filled-in" for them saying things like "thank-you mommy! you're the best-est!", so if they didn't want me thanking myself profusely on their behalf they'd better get to it first . A suggestion I saw on the CY board was a mom that had her children practice saying thank-you convincingly before Christmas (I think) by "wrapping" objects like a container of yogurt in a dish towel and having her children unwrap them.

You could also look for children's shows that demonstrate manners (basically, social stories). The Backyardagains have an episode where you find out that "Please" and "Thank You" are the secrets of the Nile. The Bearstein Bears have a book (it may also be an episode) about manners; we also have Winnie the Pooh manners book. When your dd is older (1st or 2nd grade) there is the "You Are a Social Detective" CD; there is also a social detective book that you may find useful earlier.

[Village Mama]

My son repeats the last words of a question in the exact same way you described. He is 10 now and has done it since he was really young. He IS on the spectrum... but I think that this behavior is more of a processing issue. His processing speed tested in the bottom 1%.

[WindyCityMom]

Thank you again everyone.  Today has been especially trying.  

My DH totally flipped out on dd in public.  Quietly, but my goodness, he just doesn't know how to handle it any more Than I do.

Dd has trouble figuring out the correct sequence to do things- like you need to put things down if you are holding them before you attempt to zip your coat. DH has no patience.  I have a low patience threshold but my goodness I am learning... My DH just seems out of whack lately.

But him going off dd totally set her off in a terrible mood and she has been a nightmare all day.  She is coloring now, and that calms her, so really hoping that makes a difference in her mood this evening.

[KCMichigan]

Originally Posted by Village Mama 

My son repeats the last words of a question in the exact same way you described. He is 10 now and has done it since he was really young. He IS on the spectrum... but I think that this behavior is more of a processing issue. His processing speed tested in the bottom 1%.

 My DD does this too--- she had a PDD_NOs dx at 4...but at 6.5 likely would no longer qualify since she *just* made it at 4. She is quirky though and like PP has very slpw processing speed-- now we hear more " What?" or a repeat of the question and then she answers it.

At 4 she had intense irrational anxiety (and still does, but verbalizes it ahead of time instead of melting down), toe walked, echolalia, poor eye contact, low motor tone/planning, sensory aversions/seeking.

AT 6, she preserves on things, has anxiety, poor eye contact, and low motor tone. Low threshold for noise/visual stimulation. But she is very verbal , affectionate, and academically doing well. The teacher and school social worker are working hard on helping her interpret social skills.

We did OT and it was fabulous. We also got OT/PT through the schools- she really really improved between 4 & 5.5. Her communication skills to tell us ahead of time really helped prevent meltdowns, yes we still get them- but almost always they are predictable and known triggers.

Take the playgroup and take it from there! DD did playgroup for ASD at 4 and it was great.

Now she is in 1st grade and doing well- quirky, but well. I never thought at 4 she would be able to handle school full-time, but the transition and super staff has really helped.

[zebra15]

WCM- you said coloring calms her.  Can you 'go with art'?  It honestly took me 30-some years to figure out that quasi-art was what I needed to calm myself.  I *think* you are trying to do waldorf? but let your DD explore with art.  Let her create/get angry/ soothe with art.  The past year of my life has been so much better since I've discovered the world of colored pencils, sketch pads and pastels.  

If she likes art, mention that to the next therapist, your DD may thrive in an art therapy environment vs play therapy at some point.

FWIW *I* don't leave home w/o a small art bag.(sketch pad and pencils)  Just knowing I have it and can stop somewhere if needed makes my day so much better.

[Linda on the move]

Originally Posted by WindyCityMom 

  I know that kids with asds sometimes do not pick up on social cues or jokes, but my dd DOES even make her own jokes. Shes not oblivious to humor.  Again, I'm left confused, lol.

My DD is without a doubt on the spectrum, and she has a sense of humor. It's atypical for kids on the spectrum to have a sense of humor, but it isn't a litmus test.

Going back to your thread title -- how to sort out what is a quirk from what *might* be ASD -- it isn't your job to do that. And no body on this thread is qualified to do that. This is a job for a specialist with years of education and training, who then spends hours and hours with your child. This isn't a dx that comes from a checklist.

Your child has multiple flags -- plenty to warrant a full evaluation. And that's all ANY parent needs to figure out on their own.

Whatever is going on with your DD, getting professionals involved *may* help your whole family. Understanding what a kid needs and then being able to tweak life around to provide it makes family life a lot more sane.