New...not sure what dx will be...

iVillage Member
Registered: 12-05-2004
New...not sure what dx will be...
13
Thu, 01-01-2009 - 12:32pm

Hello,

I have a 3 year old daughter who enrolled in preschool this year. At
home she is bright, active, loving, affectionate and very talkative. I
was sure she would love preschool. At her 6 week conference her
teacher told me she had never heard dd speak. I went to observe
her and was horrified by what I saw. Dd was hunched over, looked
down, never spoke, lagged behind in line and never made eye contact. I
felt sick to my Stomach. I stayed the whole day and she was a bit
better when she realized I was there. The SECOND we stepped through
the door to the car she face changed, her posture
straightened and she began talking away.

I had the early childhood school district come and watch her at
school I also brought dd to their offices twice. She does not
like strangers and will not speak to them. She did talk with them
while I was present. They also came to our home and sat and watched
her play. She was not comfortable be did interact with me and her
brother.

They told me that they think she is a very highly functioning autistic.
I was shocked because the characteristics they listed where they ones
she does under stress but no where else. She has
imagination, is affectionate, no ticks, no rituals, no fixations, love surprises, no stiming, nothing except the inability to interact in preschool and with people she doesn't know. She understands concepts like over under and behind. She uses pronouns correctly except she does mix up you and me once in a while.

Her preschool had a child with selective mutism a few years back. It sound exactly like her behavior at school. They (sm children) completely shut down and look frozen, do not make eye contact, do not speak, and cannot interact. It like a severe panic attack. I have never seen this anywhere except at her school. She is fine any place I have ever taken her as long as i'm with or she's with family.

Can anyone please advise me on this? Is it possible to have meet all the milestones on time and and have an autism dx? I am taking her to see our Ped Dr
next week.

One other thing. She walks on her tip toes. This has become more pronounced in the last year. I remember when she was born I asked about her legs because they seemed bent. They said it was normal. I asked again at 6 months because they still didn't seem straight enough. I was told again they were fine. At 12 months she was trying to walk but has a hard time. She was very determined and used a walker. She would trip over her toes and her right foot seemed to turn in and she couldn't get out of her own way. I asked about it and they said she would work it out. She was walking on her own at 13 months. At 2 years I told them she seemed to trip herself a lot especially on her right toes. They said it was nothing to worry about. I wonder if something is going on here. I had the chiropractor watch her tip toe walk and he didn't know why she was walking that way but she has all the correct reflexes. He said it was probably neurologically based. I researched possible causes such as spectrum disorders and cerebral palsy. Now I'm questioning very mild cp along with selective mutism!

This is so overwhelming! Thanks for listening.

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rainydaytag

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iVillage Member
Registered: 06-25-2003
Thu, 01-01-2009 - 12:59pm

Hello and welcome.

Three years old is quite young for a definitive diagnosis. Sometimes they will give a provisional or a working diagnosis to help get services for the child early on. Indeed, with early intervention, many children lost their diagnoses and gone on to full regular Ed. This has given rise to the myth that Autism can be "cured", when in fact the kid probably wasn't Autistic to begin with, but had some issues which presented similarly and were resolved.

I hope Samantha reads this thread, because she has a child with SM and a child with Autism, so she is uniquely qualified to comment on the differences between the two!

It is not unusual to have completely different behavior with family and at school. My son was one of these kids, but he was the opposite way around. He was clearly Autistic at home and a slightly quirky model child at school. It made it hard for us to get services through the school district.

Toe walking: it is commonly associated with Autistic Spectrum disorders, but not exclusively. I toe walk and I don't have Autism (I have ADHD). Nor do I have CP. Often there is no physiological reason for toe walking, but it is a sensory issue and indicative of some neurological immaturity. The feet "overfeel" the sensation of the heel hitting the ground, and this feels unpleasant, so you walk on your toes. Simple!

As she is a toe-walker, I think you should ask the school district about an Occupational Therapy evaluation to rule out sensory issues. If she has sensory issues, now is the time to start therapy while she is so young and the brain is forming. My daughter had severe sensory issues at 3yo and two years of OT fixed most of them. and changed her (and my) life.

I hope this helps somewhat.

You don't need a definitive diagnosis to post here so please feel free to stick around and ask as many questions as you need; and to chime in on any topic.

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-05-2004
Thu, 01-01-2009 - 2:10pm

Thanks for your reply. I am confused about the issue of dx changing. I assumed it must have been because they were never autistic to begin with but wasn't sure. I've heard of a few people whose children "outgrew" the dx. The director of early childhood (btw they they cannot dx only suggest) said they had a few children exit the autism program. I guess they no longer qualified.

I'd be so interested in talking to the mom of another sm child. The fact that she is familiar with both issues would be so helpful! My intuition strongly suggests that my daughter has Sm. She has a very long history of severe separation anxiety also.

I need to find a professional experienced in SM, Spectum and sensory issues. I have a feeling that will not be easy. What do you think would be best... pediatric neurologist, psychologist, or developmental Ped?

Toe walking: She stands flat footed. She has cowboy boots, snow boots and high top tennis shoes. She likes wearing them all and she cannot tip toe in them very well. I wonder if I should have her in shoes most of the time and force her to walk flatter?

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rainydaytag
iVillage Member
Registered: 03-30-2005
Thu, 01-01-2009 - 6:10pm

Your DD is pretty young, so at this point whatever the dx she just needs some help to get over her issues. I would have your school district do a full eval - including OT, and also see if you can have a private one done through your medical insurance. My instinct is to say that there is probably a lot of overlap between a SM dx and ASD. My DD is pretty social and talkative at home, and with adults, but completely shuts down among peers (her behavior sounds a lot like your DD - mine looks like she is moving in slow motion when there are several kids around her). But, despite the fact that my DD does MUCH better at home, she still has autistic behavior at home too - minimal stimming, very little imaginative play, wanting things to be a certain way... Oh, mine is a toe walker too - but only on hard floors, she walks normally on carpet :)

I was a teacher (before kids) and had a student with SM before. She was in 7th grade, and had never spoken to anyone at school - from kindergarten on. Mom really thought she would outgrow it, and so she never got any special help. Unfortunately, our school said they couldnt do anything about it - mom would have to get help privately - because she was able to talk even though she didnt. So, even if your school says ASD, and you think SM might be more appropriate, you can always let services start and see how it goes. Th eservices are more important than the dx.

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iVillage Member
Registered: 06-25-2005
Thu, 01-01-2009 - 7:36pm

I can't speak to SM vs autism spectrum disorder (ASD), but I can tell you that my 14yo AS dd met all of her developmental milestones exactly by the book and was very social, even in a preschool setting (in home preschool, taught by the moms). The only things that worried me when she was younger were that she was an extremely picky eater, she had chronic constipation, and she would fall ALL the time for no reason.

Like a PP, my dd issues were more pronounced at home; she was generally the model child in other settings, tho' she often showed mild anxiety which we just thought was shyness at the time.

As dd aged, we saw more and more behaviors that were concerning. Even still, the docs dismissed my concerns 'cus dd issues weren't very pronounced. Dd didn't get a dx until she was 12yo, after thorough testing by a team of docs (psychiatrist, neuropsychologist, speech/language, and someone else I can't remember) at our local Children's Hospital's neuropsych dept.

I agree with the PP about not worrying about the exact dx at this point but trying to start getting services that will benefit your dd. Has the school district offered services to your dd since they dx her? Regardless of whether your dd issues are caused by SM or an ASD, some of the therapies will be the same. You can worry about getting an exact dx later after you get therapies started.

(I have another ds with AS who was nominally behind on his developmental milestones, and we now know that dh has AS, so we're very comfortable with the AS dx my dd was given.)

iVillage Member
Registered: 12-05-2004
Thu, 01-01-2009 - 7:50pm

The big issue with the district is that they were not interested in her withdrawn social phobia. At one point they said that doesn't qualify. Later they changed their mind and said all her issues were autism and not any anxiety. If there is one thing I know for sure she has and has always had anxiety issues. That is almost a deal breaker for me.

Their psychologist has never spoken to dd one on one. I don't think they have an OT and they have never mentioned the need for one. The speech pathologist has spent the most time with her.

I really do what her to get some help because she can't function in a preschool setting. She looks traumatized. It's really awful to observe. I'm not sure they can offer her what she needs if they refuse to see any sort of anxiety. Still I am tempted to enroll her in their mostly mainstream preschool.

Can anyone explain why the spectrum includes walking issues? This is big area of concern especially since I have always thought her legs and toes didn't seem to move or look quite normal.

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rainydaytag
iVillage Member
Registered: 03-27-2003
Thu, 01-01-2009 - 10:43pm

Hi and welcome.

                                

iVillage Member
Registered: 03-30-2005
Thu, 01-01-2009 - 11:23pm

I'm sure they have an OT - unless you live in a VERY tiny town. They may not have seen an obvious need for an eval, but you can always request one.

I think the toe-walking for my DD is mostly to feel the "pressure" (like pp, my DD is always looking for ways to get the sensation of pressure - like jumping of high things to crash in to the ground). My DD also has a lot of coordination problems, especially when she is overstimulated. She is pretty coordinated in some situations, but if there are distractions (like other kids) nearby, she loses a lot of motor control and will trip/fall/run into things.

My DD just moved into a sp ed preschool class that has 12 kids, with a teacher and 2 aides. If your DD is having a rough time with school, you might want to see if a smaller class with more adults is possible for her. It might allow the adults to help her develop social skills more, and fewer kids might be less intimidating. School district evals are often less than optimal - they dont spend enough time on them. I'm lucky to have a couple of private therapists who make recommendations to me, and then I try to work with the school district to get services consistent with those recommendations. Finding a developmental pediatrician can be difficult, but is well worth it - they will spend more time with her, and have more expertise.

I remember being in that "unknowing" stage, with a zillion questions and no clear direction as to where to go. ((hugs))

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iVillage Member
Registered: 12-05-2004
Fri, 01-02-2009 - 1:07am

I live in a nice suburb of Minneapolis. They must have an OT then but they have never mentioned it. Also they have never mentioned her toe walking either. I don't think they noticed!

They listed these as her autism red flags..

poor eye contact
not conversational enough
not interested enough in others
no imaginary play

I had an entire page of play activities she had done during the week. They did qualify as imaginary play and I had not modeled them for her. However because they did not see them they said they did not count for their evaluation.

The first 3 listed are common with SM children. From what I have read those four alone are not enough to qualify for Asperger's. I think they just need a label and they chose it. I don't understand why they just didn't go for PDD...does that not qualify for help? The whole process has been sloppy, unprofessional and at some points almost evasive. I'm not saying she not at candidate for PDD but I just don't have enough trust built to enroll her and hope for the best. They also want her 4 days a week which is way too much in my opinion. I don't think she is ready unless I can be there some of the time.

Hopefully the referral my Pediatrician gives us will be of more help. At least we would have an idea of the types of therapy she might need regardless of dx. Then I can approach the district with a plan and guideline to follow.

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rainydaytag
iVillage Member
Registered: 06-25-2003
Fri, 01-02-2009 - 10:43am

I have to keep this very short because my hands are flaring. Try posting a question entitled "Autism or SM?" (or similar) on the main board. It will be more visible. Not everyone scrolls down the board.

Also, if you think there is a physical problem with one or both feet take her to a podiatrist or an orthopedist. A chiropractor is not a medical doctor.

Yes if shoes help to keep all of her feet on the ground, then keep shoes on her. Our podiatrist recommended boots or hi-top sneakers for my boy.

The main danger with toe-talking -and this is only it they do it All. The. Time.- is that the ligaments and tendons will shorten, making it impossible to walk or stand normally. I doubt your daughter is at risk for this, because she will stand flat-footed. My son used to stand and watch TV while balanced on a perfect three-quarter pointe. It was very impressive. I seriously considered ballet lessons for him! (and his ligaments/tendons are fine, BTW).

I hope this helps.

-Paula

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-05-2004
Mon, 01-05-2009 - 5:07pm

Hello,

The Pediatrician spent over an hour today with us. He is certain is an anxiety disorder and not spectrum. He had two other patients with selective mutism and they all present the same way. She has imaginary play, is not literal, no repetitive behaviors or routines, and no stimming.

I'll watch her carefully over the next few years and be alert to any changes.

Now I must struggle to find what help I can for her. She is completely dysfunctional in a preschool setting. She can barely even walk much less talk! It's like Dr Jykel and Mr Hyde to see her at school and any setting with she's with us.

She has begun to express that she can't join a group but is yet unable to explain why. It really is very upsetting because I know she wants to play and join in but cannot overcome the turmoil inside. Plus, since she doesn't not talk at school they began to assume she doesn't know or understand anything!!! I'm sure many of you have experienced the same thing.

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