Confuse

[skeptical5]

At 2 1/2 my son was diagnose with PDD by a behavior specialist at 3 1/2 a neurologist label him with Verbal Apraxia possible PDD. My son will play and run around and imitate the other kids but when they ask him questions he usually don't respond. I was just wondering do I have my blinder on or does he not have Apraxia? Most people you talk to assume because his speech is delay he must have Autism. I met some children under the umbrella and in so many ways he not like them but he does not fit totally in the typical world. Can some one set me straight

[scootermom]

My son had his rituals when he was younger (about 2yrs old - 8 yrs old), drove me crazy. I am a special ed teacher and told everyone that Andrew had autistic behaviors, but no one thought I knew what I was talking about...denial is great. It wasn't until he got into 5th grade that a psychologist at school said he had Asperger's. It would take hours to get him into bed because of his rituals. Luckily, and I feel bad saying that, he got very sick with a cold for 2 weeks, but the bedtime rituals went away. He was too sick for those 2 weeks to do them.
He is 13 now. Most rituals have gone away, he comes up with new ones at times, but they don't last long. He also was dx with anxiety and depression. He has his social issues so keeping friends is difficult. His brother and sister are very social which make it rough for him.  I have severe medical issues so he is oversensitive about them, which can be difficult for me at times. He is very musical so Orchestra at school is a passion and he is teaching himself how to play the guitar.

Good things come from difficult situations.

Patience is the best thing to have, not always the easiest, but good to learn. I also found to "pick your battles." It's not worth the fight when it isn't a big deal. Wish I had been told that back then!!

[888mom]

Does he have problems with ritualistic behavior (may appear OCD-like or having rigidity to routines)?  If you look at the DSMV criteria, you have to have at least one behavior under the "Restricted repetitive and stereotyped patterns of behavior, interests, and activities".  Sensory processing isn't currently on the list for diagnosing autism on the DSMV-IV, though I have heard (not sure if it's accurate info though) that some doctors are trying to get it on there.  

Not sure how much a diagnosis helps our kids at such early an age... I just think that with my daughter having something helps her get the therapy she needs, no matter what they want to call it.  There is also so much overlap between many of these neurological differences.  Things like autism, ADD, OCD, apraxia, sensory processing disorder.  I wish having a label didn't matter so much to the school system or to the medical profession to get therapy for the areas our kids need it in.  Should it really matter what they have has a name to it at so early an age?  I don't know.  I keep going back and forth on that one.

[skeptical5]

Thanks for the update if your daughter is reading early like my son she probably has Hyperlexia which is good. As far as my son goes, he does interact with others but  sometimes has problems with social cues and some coordination (like bowing, twisting his body in circles and he still walk with arms up and wrist down. The only sensory problem he has is the need to be around other kids running and jumping.) He doesn't care much about sitting down an interacting one on one.

Once again,
thanks for posting

[888mom]

Sorry, also wanted to add one more thing (it's late, so I'm not being concise here at all)... the ritualistic behavior has been getting worse as some of her sensory issues have been getting slightly better.  If you do things differently than how they were done before, she has a melt down.  She likes to ritualize routines.  This goes as far as things like needing to put on her clothes left leg or left arm before the right side.  There are rituals for getting into the car.  There are rituals for many things.  Some we try to nip in the bud especially if they involve other people participating or are just too wierd in public.  Other ones, like dressing or car seat or things in private, we just let her do.  We learned that if you squelch one ritual it usually pops up somewhere else, so letting her do the ones that aren't so strange and don't involve others helps her keep some order to her world.  And going out to shopping invovles rituals.  I let her keep those because the other choice is just not to take her anywhere.  I'd rather take her places.  She's well behaved when I do, if the store  is not overwhelming for her (sensory issues coming in here).  

I guess the other thing I should add is that one thing I experienced with my daughter is not many believe she has PDD and I stopped telling people she was diagnosed with it.  People ask why she can't talk.  If I don't know them, I just say she has some language delays with OCD.  People know OCD.  Sometimes I add that she has sensory issues if they see her freaking out about something.  But in the past when I told people she had PDD which was a form of autism, they just told me back "she can't have autism, she's so well-behaved."  Well, most people think that if you have an obedient child who isn't throwing tantrums all day, then it isn't autism at all.  She's also really smart... although she can't talk well.  Another thing people told me was that she can't have autism if she's doing 40 piece puzzles.  She was doing 30 to 40 piece puzzles last year when she was not quite 3.  SHe's now doing 60 piecers at 3 1/2 when most people her age are doing those 12 to 24 piece ones.  Plus she's  starting to read now.  And is amazing with a digital camera.  An adult camera, I should add.  Can zoom in and out, center the subject dead on accurate, and get the focus right.  She started at 18 months with our camera.  Her 4 year old cousin almost  broke it when I thought "hey, he's a year older, he'll be great with it."  Well, wrong.  

Anyways, wanted to share that there are lots of misconceptions about the autistic spectrum.  Many think that if someone has autism  they are stupid and can't behave themselves and can't be taken out of the house.  At least with my experience in the past talking with people.  Or that people with autism will never talk and never interact.  There is a whole spectrum.   So yes, that is true with some and not with others. I guess the thing about people saying my daughter does not have autism is that then they proceed to be baffled when she does have a meltdown  over some what they feel is a small issue.  Whereas if a child who they felt had autism did that,  they would excuse it.  

[888mom]

Also wanted to add why the developmental pediatrician diagnosed her with PDD.  Part of it was because of her developmental history and we went in several times over 6 months to see him and he got various snapshots, so to speak, of her developing and interacting with her.  Basically the main points were that she had a significant language delay, huge sensory issues, and had ritualistic behavior and some OCD-like behavior.  From her developmental history, she also did things very late and only after therapy.  Signs that pointed towards PDD were at age 24 months she was not able to point at all and could not look at anything you pointed at.  At that point she had been walking on her toes (she walked late at 16 1/2 months to begin with) and she also did a lot of arm flapping (she only flaps her arms now when she's really upset but other than that that has discontinued).  Her receptive language came in very late, well after 24 months (she didn't even respond to her  name until like 26 months, and that was after sensory integration therapy had started).  When he had seen her at 30 months, she was just starting to figure out pointing with therapy sessions.  She could start to point at something when asked, but only something she could touch, like in a book.  She finally got the pointing thing at more of a distance at around age 3.  She still has problems with pointing, but we play a lot of games with find the object where we use pointing.  She also learns language similar to how people with autism learn language and she memorizes phrases.  She had falled down in the doctors office when she was close to 3.  After she fell down (she was acting silly, so it wasn't like she was really hurt)... well, she said to herself, "Are you okay?"  That's about when the doctor said he felt that she had some sort of autistic spectrum disorder because she had rote memorized phrases and she really didn't know what the meaning of the sentence meant.  She just knew that when people fell down, that's what you say.  So he started asking questions about how she was learning speech.  Her speech is getting better and she does know how words are getting put together, but she still relies on rote phrases that she memorizes.  She also reverses her pronouns a lot in her speech.  We have been struggling with pronouns.  That is also a common thing with children with autism learning language according to her speech therapist.  We just have to continue playing games with pronouns and asking her questions and correcting her as needed.  Some things the school system has commented on why they feel she has PDD/autism is that she has a lot of problems understanding more abstract questions.  She's great with concrete questions and talking about things immediately in front of her.  But things like "What did you do?"  Or with feelings andtalking about abstract concepts, those are really very hard for her.  FOr summer, I had to go through therapists again to qualify her for speech therapy over the summer and have our insurance pick up the bill.  So a 2 hour assessment.  They came up with PDD and the reason for speech therapy they gave was "symbolic language disorder" that impacted her ability to socially communiate and develop normally.  Well, her language is still over a year behind and that also qualified her, but the coding they used to justify the therapy was symbolic language disorder.  I found that curious because outside of medical coding and billing I don't think you find that description.  But it sort of is accurate in one of her problem areas.  

[888mom]

They thought my daughter might have apraxia when she was 2 1/2.  The problem was that she didn't have many words in her vocabular (at that point with speech therapy she had like 12 words).  As she started to speak more, they realized it was poor motor planning.  I think these things kind of have some overlap in the younger years.  I think the important thing is that you advocate for your child to get him the therapy he needs and all the early childhood intervention that you can obtain that is free (through the school system) or low cost (covered by insurance with only a copay if you are lucky--you have to watch for max amounts for the year).  I have learned that at early ages, having a diagnosis of some sort is sometimes helpful, but getting therapy for the areas he needs help in regardless of what type of label they want to put on your child... the therapy is essential.  If he has social communication delays, addressing that in his IEP is important. He may not have autism or PDD but if he's having significant delays with social skills because of his apraxia, he needs to have the social interaction skills also addressed.  If he is having sensory processing problems making sure he gets occupational therapy is also essential.

My daughter is still more than a year behind in her language skills, but she is social.  She doesn't get social cueing at all.  SO we practice a lot.  And I make sure her play dates are usually with kids she knows.  She has some sort of rituals with play with them... she knows there are certain games that they play.  I've been trying to teach her rote responses to questions that they usually ask her.  I sometimes step in if she's having problems, but when I see she's good and doing okay on her own, I step way back and just let her interact.  She doesn't talk much with her friends, but I noticed that she plays with boys who are more physically interactive.  She's also picked up that flattering people makes them react nicer to her.  So she tells her preschool teacher she looks pretty.  She tells kids her age things like "Way to go!"  She claps for some kids or gives them high fives.  But she's needed coaching to do those things and to learn responses.  We practice at home with mommy and daddy and then we try things out on our closer friends.  A year ago she didn't play well with kids her own age, so I had her play with kids who were a bit older than she was.  Older kids are a bit more tolerant of younger kids... if you can find some of them who like younger kids.  

There is a book for kids who are just late talkers.  Actually there are two books, both by Dr. Thomas Sowell.  I believe one  of the people who helped with statistical studies and research was Dr. Stephen Camarata.  I believe there is a yahoo group for parents who feel they have late talkers but it is not autism.  

Apraxia does have overlapping traits with autism.  And sometimes they can coexist together.  The whole thing gets really confusing.  It can also get really expensive seeing the specialists and all the tests.  We saw a developmental pediatrician for our daughter.  I know pediatric neurologists can get pricey with the MRIs they do and all the tests.  Developmental pediatricians can get pricey with the team of therapists who do the evaluations and genetic testing.  Our daughter was diagnosed with PDD-NOS, and frankly at this point in time, I don't care about questioning the diagnosis because she's very young to differentiate between various diagnoses and the school system and her IEP is written so it addresses the areas she needs help in, not based on some label, based on her individual needs.  At some point when she's a bit older we will go back to a specialist.  The school system did their own assessment and they came up with autistic spectrum disorder, even with our daughter being as social and interactive as she is.  She's actually very huggy... overly so.  She hugs absolute strangers.  She ran up and hugged the door-to-door sales lady today like she was her bestest friend in the whole entire world.  The lady was a bit freaked out and all I could come up with on spur of the moment was "you look like her baby sitter so she thinks you are someone else" and that stopped the lady from freaking out.  So, would people believe she has a form of autism?  Probably not... but the definition of autism, I'm citing from the school system now and the informational sheets they gave me after they assessed my daughter, was that there is either an absense or a marked difference in how the person socializes.  My daughter is social, but there is a definite difference in her ability to and how she socializes.