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Featured Unusual set of symptoms

Discussion in 'General Autism Discussion' started by CWard12213, Feb 9, 2018.

  1. CWard12213

    CWard12213 Active Member

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    Hello All -

    I am posting in the hope of gathering insight/ideas into where to go with my 18 month old daughter. I know a diagnosis cannot be confirmed or denied via an Internet forum, but she has a mix of symptoms that I've never seen or heard of before and I am reaching out to see if this sounds like anyone else, and if so what treatments were utilized and what the outcomes were. I should add that I live in a fairly rural area in the Midwest so there aren't a lot of assessment or treatment resources in this area. We visited our pediatrician when she was 15 months old and he administered an MCHAT and said she was at risk for autism. In some ways autism seems to describe her perfectly, in other ways it sounds nothing like her. Here is a brief description.

    What sounds/looks like autism:

    Not speaking. Makes sounds and is very vocal, but nothing resembling words other than noises like "hey" or "yay" with no context.

    Generally, social engagement is low. She rarely seeks people out for play. Eye contact is low. She doesn't respond to her name and rarely mimics gestures or sounds, though at times she will. She rarely smiles socially. It is quite hard, often impossible, to get her attention, e if she is playing with a toy or the TV is on. She will bring us toys if she needs something, like if she wants a book read to her or doesn't know how to turn on a toy, but never just for shared attention.

    She has a very long attention span and will play with toys for 20+ minutes at a time sometimes, even when alone. I wouldn't say she prefers being alone, but she is much more OK with it than most kids her age. Watching TV is one of her favorite things to do.

    Although she is physically able to walk, she rarely does. She prefers to crawl.

    She is kind of obsessed with the color yellow and will always pick a yellow toy over any other toy. Sometimes she crawls around while carrying a random yellow toy.

    No imaginative play at all that I have noticed.

    What doesn't look/sounds like autism:

    No apparent sensory sensitivities. She loves to be outside and crawl in the grass. She enjoys swinging, car rides, hugs, and being tossed in the air. She does fine at grocery stores, toy stores, Sunday school, and large family gatherings. Doesn't mind the mower and loves the vacuum. A little picky with her eating but nothing major. She is very physically affectionate and cuddly and seeks to be picked up and held, especially if hurt or distressed.

    No real repetitive motor movements. Sometimes she flaps her hands for 2-3 seconds when excited. If you added up all her hand flapping, it might be 5 minutes a day. She sometimes rocks while standing like she wants to walk. Other than that, nothing.

    No restricted interests. She loves to play with tons of different toys and plays with them correctly including stacking blocks, putting shapes into holes, turning pages in a book, rolling a ball back and forth, bouncing on a trampoline, playing piano, pushing keys on a cash register, moving beads on an abacus, etc.

    No behavioral rigidity. You can pretty much interrupt her or take a toy away at any time and she might get a little grumpy, but gets over it in about 15 seconds. She doesn't mind being watched by grandparents, we've even left her overnight with her grandma and she left her feed her, rock her to sleep, etc with no problems.

    If you can find an interactive game she enjoys, she suddenly becomes socially engaged. For example, she played peek a boo with me for 10 minutes this morning and was laughing and smiling with constant eye contact. But then she got bored and played with blocks for 30 minutes without looking over at me
    Once.

    So I am baffled. Her social development and lack of language seems very in line with autism, but she seems to be lacking s lot of symptoms needed for a diagnosis. Any thoughts? Any other questions about her? I just don't know where to go with her.
     
    Last edited: Feb 9, 2018
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  2. tree

    tree Blue/Green Staff Member V.I.P Member

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    No pretend play at this age sounds rather normal to me.
    Pretend Play | What to Expect

    "At risk"?
    What areas did the doctor find to be problematic?
     
  3. Streetwise

    Streetwise Well-Known Member V.I.P Member

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    IMG_0526.JPG welcome -it could be just plain brain damage or a disorder akin to down syndrome .Brain damage can mean different things I have a friend whose daughter is severely brain-damaged but that's just one form of it. i'm not a neurologist I'm just chipping in .
    autism spectrum disorder covers disorders that aren't actually called autism but are like it ,I would be like your daughter to a certain degree when I was a child but I had no speech delay, didn't stimulate very much i.e. flapping hands,people on the autism spectrum are very individual ,if you meet one person you've met one person -it's the same for all humans if they have a disease or disorder it's always very individual .
     
  4. CWard12213

    CWard12213 Active Member

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    Mainly the low social engagement and language delay. I want to make sure I don't minimize, her social engagement is really low except for these occasional moments where I can find a social game that engages her. She will happily go half an hour without looking at or interacting with another person. She doesn't check for joint attention, doesn't follow gazes or pointing, rarely mimics, rarely responds to voices, etc. In terms of social symptoms she seems to be on her way to meeting all ASD criteria, but she has no other symptoms. A simple language delay or something along those lines doesn't seem like it would cause her social engagement to be that low. It is drastically different from other kids her age.
     
  5. CWard12213

    CWard12213 Active Member

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    I don't think she has any kind of cognitive issue or delay. She definitely does not have any genetic condition like Down syndrome as she was a high risk pregnancy and had a lot of in utero genetic testing. She learns VERY quickly when she is actually interested in what she is doing, but it can be so hard to get her interested in anything. Like speech. She just isn't interested in people speaking to her at all.
     
  6. LucyPurrs

    LucyPurrs NT, INFJ V.I.P Member

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    For what it's worth, my sister, who is very intelligent(probably gifted) had speech delay. I forget at what age she started speaking but when she did it was in complete sentences.
     
  7. CWard12213

    CWard12213 Active Member

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    Do you recall if she also had low social engagement? That's why I'm so confused. Her symptoms seem more significant than what would be explained by a basic speech delay, but less significant than what would be required for a diagnosis of autism. It's like she has something in between the two severity wise, but as far as I know there is no such condition
     
  8. LucyPurrs

    LucyPurrs NT, INFJ V.I.P Member

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    No I'm only 3 years older but recall what my mother said about her speech.
     
    Last edited: Feb 9, 2018
  9. CWard12213

    CWard12213 Active Member

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    That's the part I can't figure out. Socially, she strongly resembles a toddler with mild autism. But she has no other symptoms. I've been scouring every resource available to me and haven't found anything that sounds quite like her. Autism sounds the most like her, but it still doesn't seem right due to the absence of some key diagnostic criteria.
     
  10. LucyPurrs

    LucyPurrs NT, INFJ V.I.P Member

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    Maybe she is just too young yet to determine what if anything is going on?
     
  11. CWard12213

    CWard12213 Active Member

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    That's very possible. I know it's hard to determine anything definitive at 18 months because early childhood development can be very uneven and kids her age often have unusual behaviors that they just spontaneously age out of. At the same time I know there are early interventions programs for ASD for kids her age or even younger so I need to make sure I stay vigilant.
     
  12. OkRad

    OkRad Well-Known Member V.I.P Member

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    Most drs now do Karyotyping for children (and adults) with suspected Autism. Push for Karyotyping because there may be a genetic duplication or deletion, etc. Copy Number variation.......
     
  13. Kathos

    Kathos Member

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    Call your regional center as soon as you can and begin testing. My niece lives in a rural town near Peoria Illinois and she has a speech therapist come out to their house for her autistic son. Your child may just have a hearing problem or may legitimately have a speech delay or possibly autism. In any of those cases the regional center will test everything and find out. They will also treat any delays that are 3+ months behind even if speech is the only issue they find. Your child would be checked by a psychologist, speech therapist, occupational and even physical therapist if they feel it is warranted. Most importantly this is all 100% covered(unless your health insurance covers it, after 6 months they will ask).
    Furthermore, regional services stop at age 3 - it takes several months to test and get results and your daughter is already 18 months old. After age 3 the case is moved to your school district after which you might prefer to forego public services and go private - even if it costs you thousands of dollars. Aspergers treated early has a tremendously high success rate which I've witnessed with my 11 year old nephew. He clearly had aspergers when he was a baby, but after doing 6+ hours of ABA therapy a day for 2 years(he started around 18 months) he is now an allstar athlete at a gifted school with lots of friends.
    I also wanted to mention that its great that your daughter likes independent play but I encourage you to interact because she is missing out on opportunities to learn language. You don't have to play with her per se but when she picks up an object say "that is called a ball" or "that is called a car". For some reason saying that is "called" something makes a huge difference for their language skills. Eventually start adding things like "you put the car IN the house" etc... My first son had a mild speech delay and I didn't bother with therapy because I thought it was ridiculous to give a baby speech therapy. Once kindergarten hit we had a problem and he is still going to therapy to this day. My second son also had a delay and started Regional center services at 18 months old - after 3 months he caught up and by 6 months we stopped because he was speaking many months above his age.
     
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  14. CWard12213

    CWard12213 Active Member

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    Thanks for the feedback. We actually are working with regional services and that's part of my confusion. All they did for testing was repeat the MCHAT and said she was at risk for autism. They set us up with play therapy 2 hours a week and no speech therapy because they said her social engagement is too low for speech therapy. It's only been 5 weeks but I see no difference in her engagement. I'm just wondering if the reason her social engagement is low is because she doesn't understand or know how to use language.
     
  15. Mary Terry

    Mary Terry Well-Known Member

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    She is very young for a diagnosis of autism and everything you described seems common for children that age. Try limiting how much time she spends watching TV and use that extra time with her to encourage interaction and language development. That will help all children, autistic or not. From what I've seen, autistic children usually act like other kids until about age 2 when they may start loosing language, drifting into self-absorption, stop interacting with other people including their parents, avoiding eye contact, etc.
     
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  16. Kathos

    Kathos Member

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    It sounds to me like you are on track and getting the help your little girl needs.
    Concerning her social engagement, 2 hours of play therapy/week is not very much in the grand scheme of things. I wonder, do you have a good relationship with your therapist and is she offering reading material and activities for you to do between sessions? This is really important that she show you what to do and how to play with your little girl between sessions else progress will happen very slowly.
    If you feel she is not the right therapist for you, call regional and ask for someone new. Also ask them when they plan to redo the speech evaluation - hopefully it’s before her 2nd bday.

    I think social engagement often happens without language so I don’t think speech and language is what’s holding her back.
     
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  17. CWard12213

    CWard12213 Active Member

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    I don't know for sure if a language disorder would drastically impact social engagement or not. I feel like if I went to a country where everybody spoke a different language my social engagement would drop a lot. The thing about my daughter is that she loves being around people, being held by them, playing next to them, etc. She will drop everything she is doing if she sees her brother sit down at the Lego table and will go "play" Legos next to him, which is not something she does on her own, for example. Yesterday I held her in a tight hug for at least 20 minutes and she got fussy if I tried to put her down. She just seems to have almost no interest in what people are doing.

    With regard to the play therapy, I've only met the therapist once as she usually comes when i am at work so my wife mainly interacts with her. She does give us homework and I try to personally do an hour a day with her. We have a very high energy but NT 5 year old who takes a lot of our time too :) I'm just not seeing much progress that wouldn't be explained by age and maturation from the play therapy. She has a couple more games she will play with us now, but she already had several. She doesn't mimic us any more than she already did or seek out interactions with us.
     
  18. CWard12213

    CWard12213 Active Member

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    This is how I spent a large chunk of my Sunday afternoon. I'm just baffled how her social engagement can be this low when she is simultaneously the most cuddly and loving toddler I've ever met.
     

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  19. tducey

    tducey Well-Known Member

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    I didn't get diagnosed until I was 6. Still it might be a good idea to take her to a doctor to see what's up, better safe than sorry.
     
  20. CWard12213

    CWard12213 Active Member

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    One other thing I should mention is that she has always been a bit of a mystery and has had some significant health issues. When my wife was pregnant with her, her yolk sac was enlarged to over 10mm, which carries an almost 100% risk of miscarriage. Every OBGYN in our office said they had never seen a baby survive when the yolk sac was that large. So something may have impacted her early prenatal development. She was also born with a birth defect that required a week in NICU, a surgery at 2 months, and anesthesia twice for follow up tests. So her being a little behind was somewhat expected, just not to this extent. Part of me wonders if she has some incredibly rare or even undiscovered medical issue given that she is already pretty unique just by still being alive.
     
    Last edited: Feb 12, 2018