Nonverbal, Very Possibly Autistic Child. Desperately Want Advice/Similar Stories

Discussion in 'Special Needs Support' started by BrookeS, Aug 10, 2018.

  1. BrookeS

    BrookeS New Member

    Jul 27, 2018
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    My name is Brooke and I have a 2.5 year old daughter... and I am completely lost at what might exactly be going on with her. This is going to be a pretty long post, so forgive me.

    My daughter is 2 and a half and is almost completely nonverbal, has very, very, very poor receptive language, throws terrible tantrums, and has no interest in playing with other children. She has been obsessed with lining up her toys since she could sit up. She also organizes things by color, size, etc. If you mess up her rearranging things, she will have a MELTDOWN.

    The Tantrums:

    When she gets frustrated, she will tear down blinds, hit her younger brother (year younger), or claw herself. We have made a lot of progress with her hitting her brother or tearing things up, her tantrums have become less frequent, but they are still just as extreme when they do happen. Since she was a baby, she will get on her back and her legs will become stiff, she'll point her toes, and arch her back and yelllll. She will yell until she is gasping for air and her face is beat red. She will claw her neck and pull on her teeth. She will throw her bottle or throw anything you try to give her. Holding her or trying to comfort her does NOT help. I have to clear out her room and let her 'scream it out'. It used to last for 5-10 minutes, now it maybe lasts 1-3 minutes max. When she calms down, she does hug me and cling to me and just cries real tears. I really think it's overwhelming for her and she can't even express how she feels.

    Receptive Language:

    She does not respond to her name MOST of the time. She has before but it's not common. Usually you can scream her name and she won't look at you. There are a few things she will do if you tell her to. If you reach out your hand and say 'grab my hand, let's go' she'll grab your hand and walk with you. A lot of the time if you tell her to grab the ball she will, and occassionally she'll kick the ball if you say 'Kick!'. She does not understand words. If you sit down and tell her you're going somewhere or will do this or that, she not only will not have a clue what you're talking about, she does not care. She will be looking around you at toys or staring blankly at you. Recently, if you get down on your knees to grab her hands and just talk to her when she's upset though, it does it calms her down a bit. She will look at you when you're talking but I don't think she understands anything.

    Other Children:

    She tolerates children as we've had her in daycare since she first turned 2, but does not attempt to play with them at all. The daycare teachers say they might see her attempt to kind of smile or giggle or remotely play at all maybe once a month. It's that rare. She loves adults though. Usually she's doing her own thing. She loves toys, and will play with them. She just started to kind of play with toys 'correctly' though. And really, I just think so, not really sure how great what's she is doing it but it seems great to me. Like, she gets on her train and scoots herself around. She will 'clap' her toy's hands together. She will make the toy bounce up and down on it's feet. She doesn't really know how to use a tea set or pretend she's something like a ghost or princess or anything like that though. She doesn't understand that concept.
    But with other children, she mostly just plays around them and tolerates their presence. She will hug on and occassionally cuddle with her favorite adults like her speech therapist or me or her dad.

    She does very rarely play and giggle with her brother. Like if they're taking a bath together or something.


    She doesn't really have much communication at all. She knows the 'more' sign which has basically turned into her clapping her hands together like a seal when she's impatient. (LOL) She doesn't pull you towards things, she won't point to things, she has very few words. She JUST started to point a VERY little bit. She will point to letters and things in books now. She is OBSESSED with the alphebet. Knows nearly the ENTIRE alphebet. She can say NEARLY all the sounds of the alphebet, in order, and will sing the alphebet. She can point to nine and say 'NIN'. She does imitate some things, like cartoons. She will immitate the 'itsy bitsy spider' or 'If You're Happy and You Know It'. She'll imitate brushing her hair or brushing her teeth. She will stomp if you stomp, she will smile back at you if you smile at her. But she knows the word 'neigh, moo, and tries very hard to say 'caca doodle doo' (lol). She can say them appropriately too, but will also repeat them over and over not appropriately. Same with 'mama' though usually not appropriately. That is the extent of her language. She has said other words then never said them again. She used to wave, and now will do it maybe once every 2 months, but it's just her flapping her hand around. She doesn't really understand the point or what she's doing.

    We've had her hearing tested, it's fine. But it will be 10 months before she can be evaluated for autism. I love her so much and it makes me so incredibly sad at night to think my baby may never talk to me. It's especially prevelant when around other children. That is what hurts the most. The other kids obviously are so perplexed by her. She is VERY beautiful. She's got bright blue eyes, blonde hair, cutes smile, but the other kids can't even say hi to her. She wants nothing to do with them. THey're just in her way.

    Additionally I'd like to add that she 'humps' her blanket before going to sleep, will not wear hats at ALL, and won't drink from a cup unless it's pink, orange, or red.

    I can't find ANYONE with a child quite like mine. I am so desperate for some stories to give a little hope. Has anyone had a DD like mine? Did they end up talking? She's in therapy. Did therapy end up helping? Please share your stories. I would absolutely love to hear them right now. Thanks so much.
  2. deafgal01

    deafgal01 LTTTC #1

    Feb 22, 2011
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    Word of caution - I'm not a parent, but I do work with kids (deaf and autistic). So you can take my advice (or choose not to).

    Sounds like she likes music, so have you thought about trying Signing Time as that has music with the ASL signs? That might help with vocabulary.

    I'm sorry I'm not much help but I didn't want you to feel like you were ignored. I hope others can chime in soon.
  3. Eleanor ace

    Eleanor ace Well-Known Member

    Aug 29, 2010
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    :hugs:. Aside from being non-verbal, your DD sounds a lot like my DD1 at that age. She really struggled emotionally and was just haaaard work. She is 5 now and a bloody angel! Honestly, people who meet her now just can't believe it when I or others who have known her since she was a baby say what she was like. She is very bright and I think she got frustrated at not being stimulated in the way she needed/wanted when she was little. Since she was 3.5ish and could express her interests and show a desire to learn she has been much happier. She needs stimulation but can often find it herself by reading, asking questions and taking part in activities.
    We have gone through (and are still going through) assessment for ASD with DD and also at the beginning stages with DD2 who is almost 3, although she is quite different to DD1. I would say that if you feel your DD is on the spectrum/has other needs, keep pushing it. See your HV/GP (if you're in the UK, I'm not sure who the alternatives are in other countries I'm afraid); DD1's HV was convinced that she is on the spectrum and was the driving force behind getting the ball rolling on assessing her when she was just turned 2, although it wasn't something I was comfortable with at that time (as I didn't/don't feel that she is autistic) so we took it very slowly. It can be a very slow process anyway so the sooner you have raised your concerns and have a referral pending for when they will OK it the better I would think. They can also refer her for speech therapy which she should be able to get access to at this age if they agree she needs it.

    I would recommend offering lots of alternative stimulation for your DD, for her to express herself and enjoy what she likes. My DS was speech delayed and would get frustrated but enjoyed a lot of different activities which didn't put pressure on him to talk. Games like matching, creating patterns (threading beads of different shapes/ colors). Your DD might enjoy games with flashcards as she enjoys the alphabet; for example, matching a letter card to pictures with that initial sound could be fun. You would say the names of the different objects pictured and then she would match the letter flashcard to the right picture. This could also help your DD to understand the correlation between objects and words.
  4. sethsmummy

    sethsmummy mum to 3 beautiful boys

    Aug 1, 2012
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    Beautiful, everything you have described here can be completely normal for a child of her age :hugs: Please try not to panic. She can say the alphabet.. I would say that means her speech is pretty good for her age :D (that's actually really clever!)
    I think half of the issue is we look at the children around ours and wonder... they can do xyz.. so why cant mine? What we need to remember is that every single child is different and they all develop at their own pace. at 2.5 playing along side other children is perfectly normal as they don't always learn to integrate themselves till around 4/5.
    The meltdowns don't sound overly excessive for a child her age since they last a relatively short amount of time. Wanting a specific colour cup is just a normal toddler trait that most toddlers will go through (the joys when you don't have the right colours :dohh: )
    Humping is also extremely normal, shes found something that feels nice and wants to keep doing so. Its a nice sensory input for them and just the same as when toddler boys wont leave their bits alone.

    At the moment I don't think you have anything to worry about, her speech will likely come on within the next year and you will be wondering why you were ever worried :hugs:

    As she gets older some of the behaviours should lesson and she will slowly start to take more interest in playing with other children instead of just playing alongside them.
    All you can do speech wise at the moment is just encourage, encourage, encourage, don't get stressed though as this will show. My youngest was pretty much non verbal at that point in time (all he had was 3-4 words) .. now he doesn't shut up :haha:

    Since a speech delay has been found you should be offered development reviews as she gets older so anything should be picked up <3 <3

    Coming with love from an Autism mummy and mummy to two other children with extra needs <3
  5. lusterleaf

    lusterleaf Well-Known Member

    Jul 4, 2011
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    My son is 6 and nonverbal. But anything can happen with therapy- in my case my son still isn't talking and I don't know if he ever will- but right now we are introducing him to an I-Pad app and hopefully that will give him a communication outlet so he gets less frustrated.
  6. Neuroscimom

    Neuroscimom Member

    Oct 4, 2018
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    Hi, question, does she do odd repitive behaviors? Weird noises?? This is usually the age that neurological disorders comets light. I have an autistic almost 5 year old and it was at that age that I had to accept he was different. Where are you located? I would recommend a professional evaluation and start services ASAP because early intervention is key. Your instincts are telling you something is up. Trust those and fight like hell for her to get the support and services she needs the drs didn’t listen to me at first and my guy is moderately-severe. When he started the special ed program he had very little language. He has come a long way. All thanks to early intervention.

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