Please help!!! | Autism PDD

Hi. I've been on this site reading for a few months, and have finally mustered the nerve to ask about my daughter. I've been frantic for six months now...Since I googled her arm flapping at 18 months old. Everything came up autism. Her language skills are better than normal considering she is learning three languages. She turned two last week and is doing the best in English. She is putting sentences together with three words, etc. Her receptive language is great too. Understands everything in all three languages. She is social, has friends that she asks for, is very loving and sweet, follows me around the house, has always imitated me putting makeup, talking on the phone, etc. She has pointed to things she wants for as long as I can remember. I have given her the PDD-NOS test and it said "No PDD-NOS." She also passed the M-CHAT when she was 18 months old. This is the good stuff...

    The scary part is the arm flapping (which has disappeared now), the toe walking, and recently, what seems like some echolalia. She exibits some delayed echolalia, which is used appropriately for the most part. She also learns when its wrong. For instance, she started to raise her arms and say "carry you" instead of "up" like she used to. She did this because if she would say "up" I would say, "do you want me to carry you?" I corrected her and said "say carry me." Now she says "carry me." But, it doesn't change the fact that she does this odd parroting of me on occasion. From what I've read, this is sort of normal at 24 months, especially when coupled with their own spontaneous speaking. I don't know...I'm still worried sick. She is my only child, I was older when I had her (38) and I know nothing about children. I also don't want to get her tested because, if she's speaking, and functioning as normal for now...why label her? After reading here for a while, I respect your opinions and would love to hear what any imput you may have. Thanks!

Welcome!

For someone who "doesn't know anything about children" you are doing a great job by following your daughter's development closely.  You mention some strong positives (language, social), as well as some red flags (the toe walking, flapping, echolia).  I would take her for testing, if nothing else for your own piece of mind.  It could be nothing.  At 24 months I would think that there would be some idiosyncracies in language development for a child learning 3 languages.  Or it could be something that you could get therapy now for and have her in a much better position to start kindergarten in a few years.

I wouldn't worry about labeling her.  If it turns out that she does have ASD, then that label is the key to unlocking the door that gets her the services she needs.  You wouldn't want to turn around in a year and say "I wish I'd taken her for testing."  Lot's of folks on this board regularly beat themselves up for not noticing earlier, being in denial for too long, not starting therapy earlier.  (I don't mean this as a criticism, just a fact.  There are so many great people on this board doing awesome things for their kids and it breaks my heart to read posts where people are putting themselves down or having regrets for not taking action sooner.)

When I raised my concerns about my son at his 2 year checkup, my pediatrician said that at age 2 it is often difficult to discern the difference between a delay (something that will eventually catch up on it's own over time without intervention) and a disorder (somethat that won't magically fix itself over time and requires treatement).  He recommended I take C for a speech / language assessment at a private clinic.  He said that if it turned out that C had a disorder, we'd be getting a jump start, and even if it turned out to be just a delay then the therapy would just speed up the process of catching up.  There were no downsides to testing and therapy.

I know it's scary to start down the testing path.  It makes your fears so much more real.  But personally, I'm not a "wait and see" kind of girl - I'd rather be hit on the head with bad news rather than not knowing.  Best of luck. 

Welcome! I had to check out your post as Nika was my beloved
grandmother's name

Of course I can't dianose your daughter. But I will say that she doesn't
sound very spectrum-like from your descrption. She sounds social, like
she has age appropriate languge skills, she points, engages in imitative
play.

I think "parroting" parents speech, some toe walking, and some arm
flapping is extremely common at that age as well.

BUT, I always want parents to learn to trust their voice inside and learn
(by trial and error sometimes) when they have a true GUT feeling, or when
they are worrying needlessly. I reccomend that you call Early Intervention
services in your area (ask your ped, or google it up) and ask them to
come out for an evaluation. This is standard procedure for any child with
delays. The service is free, and they asses your child for any "red flags".

That's it. They will tell you what to do if there is any cause for concern.
Or they will tell you her development seems normal to them. There is
never a need to worry about "labels". If a child qualifies for a diagnosis
for any reason, the proper one helps create the proper treatment plan.

But, again, from your limited description, I didn't have any concerns.
good luck. I was 41 when my only son was born. That was 16 years ago. I can tell you that the greatest sin we parents can commit against our children is putting our pride before their treatment.  Yes, not wanting to "label" them is pride. Most people say it's because others will treat them differently, but the truth is that we don't WANT labels for our children -- not that they don't want labels. or NEED labels.  First of all, whatever "label" your child gets is utterly private. No one needs to know.  There are HIPPA and FERPA laws that vigorously protect your privacy. So the "labeling" argument is moot. Second, she needs intervention in order to have her best chance at some degree of "normalcy."  Get her evaluated through EI (Early Intervention). Her symptoms are indicative of SOMETHING and they won't go away on their own.  Some day you will feel SO GUILTY for not having gotten her "labeled" when you knew in your gut she needed help. She sure sounds ASD to me.  EI will help more than getting a medical "label."  You are NOT seeking a label, you are seeking help for your daughter and for yourself.  If she has to be "labeled" to get this help, so be it.  If you don't get help TODAY, you will kick yourself forever.  Believe me on this one.

You seem to be really great and conscientous mother

Does she tunr around when you say her name - that is one of the huge red flags A lot of what you said does NOT sound ASD to me but there are a few red flags - remember that ASD is called a spectrum disorder for a reason - its a really wide spectrum and she could be on the part of the spectrum that is petering onto notmal

Many of the parents here - including me - our major regret is not seeking intervention earlier - my denial haunts me everyday - as once you get the diagnosis - everyone tells yuo that Early Intervention is key

So call the Early Intervnetion folks in your area - and tell them ALL her red flags

At the very least your daughter will get some fun people to play with - therapy can be a loads of fun

If you suspect something get her tested, even if it is just early intervention. They won't label her, they will just get her therapy if she needs it. And like Tzoya says if you take her to a dev pedi and they label it autism its just a label and no one else needs to know. Although honestly it does not sound like ASD to me at all. My 25 month old daughter talks like that and its perfectly normal at this age. She repeats everything and I mean everything and then actually uses it and for the most part correctly.  I have read that the peak of echololia for normal kids is 2.5, its when they don't use it appropriately or it doesn't develop into independent speech when it is time to worry. Ember will then go around the house practicing it and saying wake up to no one in particular and when no one is sleeping, but will also use it to wake her sleeping brother. I think that is perfectly normal in a 2 year old. They have to learn language somehow. The hand flapping which has dissapeared and toe walking by itself doesn't indicate autism. I had a dev pedi tell me that all 2 year olds displayed a couple of autism red flags that usually stopped on their own, and that didn't make it autism. But having said that it won't hurt anything to get her checked out and definitely keep an eye out for additional symptoms. If she needs therapy now is the time to get it.

BTW: I was 38 when my daughter was born too. I was 36 when the boys were born. And there is a very distinguishable difference between them and her.

Linda1156739294.2473726852

I haven't read any of the other posts. I will just say (not being a doc, mind you) that she doesn't seem to have many of the issues that I would call autism. However, it's very good for you to be watching her carefully and making sure she is on track. Socially, she seems ahead of my dd who is 3 (and NT!) from what you describe. Autism is mostly about social and communication issues. Her echolalia is pretty typical at this age and I would guess that, with learning 3 languages, her communication might have some developmental lags that kids who are just learning one language would not have. In other words, I wonder if the learning of 3 languages is contributing to the echolalia?

I understand the labeling thing - but the main thing is to get her help if she needs it! The label could always be taken off. At this age, you could always call Early Intervention and have them evaluate her to see if she needs services for anything - fine motor, gross motor, speech, etc. They may not even give you a label - and just provide services for developmental issues. The sooner you catch things, the better off your child will be, so DON'T WAIT! If EI evaluates her and they say she is fine, she won't get a label. But, if she isn't fine - then you need to start services for her right away. You sound like a good, caring mom - so I'm sure you wouldn't want her to not get services because of not wanting her to get a label. If you don't get services, it is quite likely that things won't get better on their own and they may get worse!

Good luck - I'm glad you posted! Welcome to the board!

hi nikas mom

to me with having a child with autism, your doughter seems fine. because autism mostly effect speech and social areas. thoes symptoms you described i have seen in lots of normal kids, but it wont hurt if you check with your pediatrition. good luck

The major red flags for her was her inability to respond to her name or look at the doctor at all..she never flapped or had echolalia but didnt use her words functionally.  She was also very aloof and content to do her own thing and no interest in us or peers, toys or animals at all...make a list of concerns and talk to your doctor and see if she can get her evaluated.  My daughter was almost 3 years old when she was diagnosed and at 7 yrs. now.. she is almost indistingushable with peers:)

Keep us posted:)

echolalia is a developmental stage that many kids go through.  It is a feature of autism because it is an immature behavior - a behavior that most kids pass through very young, but seen at much later ages in autistic kids (as they are developmentally delayed).  If her language is developing normally, I would not be concerned with the little bit of immediate echolalia.

I don't know about the arm flapping, other than it seems (to me) to be a rather common mannerism with very young children.  Again, to me, it seems more like an immature behavior that is only a concern if it's still present at a more advanced age.

FWIW - my son had a phase of immediate echolalia when he was just starting to become conversation (probably near the same age as your daughters) and he is not autistic.  My autistic daughters never had an echolaliac phase.  None of my kids arm flapped.

Autism is qualitative impairments in three areas:  social skills/social interest, language development, and imagination.  It sounds like she's pretty solidly not autistic given your description.

Of course, mother knows best - so if you're truly concerned, have her evaluated (by a specialist) to put your mind at ease. 

hand flapping can be a sign of sensory probelms, toe walking can be a sign of senosry problems and or balance. i would take her for an evaluation with an occupational therapist who also does sensory integration. be specific and ask for a sensory evaluation at the same time. a child can have ONLY sensory processing disorder.It will not hurt her or you to have an evaluation.  It will do nothing but confirm or deny.  Please take her for an evaluation.  If there are any issues, she needs help as soon as possible, the younger the better.  You're doing a great job by keeping an eye on her development and obviously researching your concerns.  Keep going in that direction and follow through with an evaluation.

Thank you all for your great advise! However, I am really scared now because I realize that I need to get her evaluated now or I'll be sorry later. I had thought of that before, but never saw the situation as being as dire as many of you explained. I guess I've been thinking that there was no reason to get her evaluated because she is not delayed in anything that I can tell yet. She's not the greatest talker in the world like some of these kids you see who can say a long clear sentence at 23 months. But, she has hundreds of words (too many to count) in two of the languages. She has only a few in the third language. She doesn't just label, she says things like "I stuck" when she's stuck somewhere...and "help" when she wants me to come (sometimes just to get me to run over so she can crack up at her trained seal). I know I sound like I'm trying to convince myself. Maybe I am, but honestly I really don't have a gut feeling. My gut actually tells me that she has sensory issues (as mbrogue mentioned). The only consistent thing about her from birth is an aversion to loud noises, dirt or food on her hands, and bare feet. She hates when my husband kisses her because of his beard. She hates car alarms, and the food processor. But, I have sensory issues too, especially with noise.

       The pediatrician thinks there is absolutely nothing wrong (but what do they know). Recently, she did mention sensory integration disorder but, acted like a little OT would take care of it. As I read about SID it seems a lot more complicated. Some seem to think it could end up on the spectrum. Am I mistaken. I could be. I've read so much literature I'm losing it! What are the implications of having SID and does it effect academic and social outcomes?

      Thanks again for all of your help. I am going to take her to a developmental ped. and I will keep you posted as to the outcome!

    

I'm glad you're taking her to the Developmental Pediatrician, rather than just EI.  I know it varies depending on the state you're in and the individual EI agency (some of them are very good), but EI for us was a complete waste of a precious year (more, actually) in my son's development. 
Because they were providing services (a tiny bit!) to my son, I assumed that they would tell me if there was something serious to worry about.  NOT!  I accidentally stumbled on an article about Autism after he'd been with EI for over a year and his speech had actually regressed, then looked up some websites.  I found that my son had many, many warning signs.  I then had him evaluated (by a Psychologist) and he was diagnosed with PDD-NOS. 
I'm still angry with EI for not realizing what was wrong with him.  Isn't Early Childhood Development what they supposedly specialize in ???
But like many of the other previous posters, your daughter sounds like she's doing well.  Try not to worry too much!  Please let us know what you find out.

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