Not sure where to go from here- nonverbal 5 year old

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byathread
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16 Feb 2020, 9:00 pm

I am not in a good place admittedly.

I had suspicions that my son was autistic well before he was 1 year old. I did push and got a diagnosis and started therapy before he turned two. Heck he started speech at 8 months.

He is now almost 5 years old and has no words. He does understand what you are saying for the most part; he just does not speak. We are getting an assisted communication device to help him. He doesn't have any friends. He doesn't try and play with other kids. His father is not involved.

We are coming up on him starting kindergarten and honestly I don't want him out in this world. I am so scared of what will happen to him and he can't speak up to defend himself. He is such a sweet sweet guy.

I know he is awfully young to predict his future (at least that is what I told myself 4 years ago). But the reality is that not having speech before the age of 5 is bad for their independence as it means he will be low functioning (even if he is not intellectually disabled). All his therapists have told me that. And while everyone thinks he is pretty smart no one know why he is not talking. He can recognize words and possibly read. None of us had any idea.

Not sure what I am looking for but thought this community may have some input. I love this kid so much. I am so scared for him. I am all he has and despite the fact that he is pretty smart if he can't communicate I fear he won't be able to function in life. I am not asking for the world- just for independence and happiness for this little guy when the time comes.



eikonabridge
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17 Feb 2020, 12:59 am

byathread wrote:
But the reality is that not having speech before the age of 5 is bad for their independence as it means he will be low functioning (even if he is not intellectually disabled).

Why all this fixation on speech?

Have you ever paused to think that all that fixation from you and your therapists might be doing more harm than good?

Helen Keller did not need any speech to develop into an intelligent lady.

Focus on developing your son's intellectual/cognitive capabilities. Focus on his interests, expand from there. Read this, and give the link to your therapists: http://www.eikonabridge.com/pull_not_push_english_handout.pdf.


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Sweetleaf
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17 Feb 2020, 1:19 am

Well it may be good to try and find some other ways he can communicate.


I mean from what I understand some non-verbal autistics are actually quite good at typing or writing things to communicate things that may be hard for them otherwise. i mean I get feeling sad your kid had difficulties in that area but try not to lose hope I mean sure being non-verbal will come with some difficulties but if you work to kind of understand him and maybe have him try out different kinds of means of communication that may help.

I mean maybe he won't be able to to communicate totally normally but, he could potentially use other means to sort of make up for that. I figure the worst thing is to just assume he has nothing going on in his head and treating him like a vegetable. Basically he probably still needs mental stimulation and just struggles with verbal communication.


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eikonabridge
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17 Feb 2020, 2:33 am

byathread wrote:
I am all he has and despite the fact that he is pretty smart if he can't communicate I fear he won't be able to function in life.

I just re-read your messages from 2.5 years ago. I have the same question for you: do you see any special interests and/or repetitive behaviors in your son, now, and through all these years?

If you don't see special interests and/or repetitive behaviors, then you MUST ask for more specialized diagnosis, perhaps full genome scan (and/or more genetic tests), to identify other potential issues.

I mean, I see most children on the spectrum as approachable and I trust they can be developed. But I've met some other cases (one case in person) where I simply have no clue what to do. Specifically, in children with myelination issues (hypothyroidism), I just have no idea what can be done there. Other children may have minor focal onset seizures, and because they don't trigger grand mal seizures, sometimes they are not detected. Yet, focal epilepsy can cause short-term memory issues that will affect learning.


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magz
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17 Feb 2020, 3:40 am

Did I understand it correctly that he used to be verbal but lost his speech?
It often happens due to stress and overload. Even among verbal autistics, for many, talking is kind of unnatural, it requires significant effort to form words and sentences. You can make a significant effort every now and then but you need significant rest in between.

Focus on communication - whatever works. My daughter, while verbal, mainstreamed Aspie, when distressed, retreats to communicating by drawing pictures - her imagination is very visual, it's her natural way. Try to find out your son's natural ways.


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timf
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17 Feb 2020, 9:32 am

You might find some success using vocalizations other than speech. Consider a game of making animal sounds. You could even see if he can imitate a Tarzan type yell. You might be able to get him to grunt in time with some music.

If speech is too high a hurdle, consider other methods to vocalize initially. You might be able to bribe him to make a single grunt with a sugary reward as an incentive. This might lead to a game with one grunt for a "yes" and two grunts for a "no".

If you are unable to homeschool, you might consider getting him into a smaller "special" class that would both focus on his deficits as well as limit his exposure to those who might bully him.



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17 Feb 2020, 12:08 pm

I am sorry for the hardship and understand your concern. I wish others were sweet. A kind supportive environment is what your son (and most ASD folks) need.

There is an ASD gentlemen on this board who didn't talk until 5 and is now highly articulate. I have a friend with a mostly non-verbal ASD child. I know the child is talking to me in her head and with her eyes and so I produce the speech for us both. I am ASD so perhaps I have a better idea of what she's thinking, or not. I expect with space and time she'll talk, or not. Yes, I understand about the difficulty to get needs met, that goes for those with speech also (and it's assumed we would ask b/c we "can"). I like that you are getting a speech assistant - I hope it clicks for him! and if it doesn't, it's a try --- and I hold hope that something else clicks for him. Although I am an extrovert, I have difficulties speaking (I appear average, which is well beneath my non-verbal ability). My ASD-like daughter is introverted and doesn't "like" to talk. Interestingly she takes after my NT husband in that way. I realize now that writing is important for me (despite an English teacher telling me that I can't write). That brings to mind one non-verbal author I've read about. Perhaps writing is more a female way to compensate for verbal difficulties, but I expect males similarly have an alternative... sorry I don't know what it is, in general or for your son... my NT but quiet and kind husband likes to go to the mountains and do mountain things. ----and I had an ASD boss at work that spoke minimally, but again, not a problem for me. Like myself he didn't progress in an environment that valued NT verbal skills, so he went to a leading technology firm to further his expertise (I have yet to find a new job). I could go on and on (about form of communication, information, Truth, etc.), but I think the usefulness to you may be decreasing, if there was any to start with. It's so hard to know what other people need, value, "get".

I am glad your son has a loving, caring mom in you!! !! !



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17 Feb 2020, 7:30 pm

One member on this forum who had been non-verbal until very late in life once posted that he had thought he was talking and couldn't figure out why others didn't hear him. You never know what is really going on.

Just yesterday I ran into a young man my son went to school with. We did all figure out early on that his prospects weren't the same as my son's, but the community embraced him. I don't remember him ever being teased; it just wasn't allowed. He can't live independently but he remains delightful; he has the obsessions he developed and he really enjoys them. I got all the latest details from him, of course. He holds an amazing amount of knowledge in his areas of interest. He was out and about with his father and seems to be living a happy life. There are many different ways to live; no one gets everything. Not everyone needs the same things. I know it has been hard on his family, but they've adapted.

I think at this point it would be best to stop thinking of the future. At least not to the extent you currently are. Fear isn't very productive. Work on the top priority issues and enjoy your sweet boy. The future is going to be what its going to be. I know the professionals you are working with want you to be prepared, but they don't actually know what your unique child's future is. No one does.

"Low functioning" is a phrase this community doesn't really use. We have members deemed "low functioning" because of verbal and other issues that are extremely high functioning intellectually, and moving forward into prestigious careers as a result. Professionals use such a small set of skills in choosing that term. Your child is much more. How much more is still to be determined. Perhaps "highly affected" by his autism would be more accurate. It doesn't carry the same implications as to what the future can look like.

Get to know your community and your school system; that will help you decide if your unique child can thrive there.

I agree that moving into alternate forms of communication makes a lot of sense right now. If A doesn't work, go to B. Then C if you must. Speech isn't the only way to "talk." You want him to be able to express his needs and knowledge. How he does it is much less important than that he finds a way. Picture cards, typing, drawing, sign language ... I've heard of all of these working with different people. I don't know how to teach any of those, but finding that resource should, I believe, be your next step. Once you've crossed the communication bridge with him, a lot of doors will open that will help you with the choices you need to make.


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starkid
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01 Mar 2020, 5:38 pm

1. try sign language

2. try positive reinforcement for vocalization

3. try an assisted speech device

4. it's just kindergarten. even if the other kids are not nice, they aren't big/old enough to be murderers yet. just try it out; it might turn out fine.



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01 Mar 2020, 8:24 pm

Jason Lu wrote an interesting book called "Eikona Bridge". He is a member of this site and has already posted on this thread. His book describes his approach and is rather unique and interesting. I suggest a read.


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12 Mar 2020, 10:05 am

About non talking and what PP brought up...

My husband only talk as a little kid about his special interests. Faces overwhelm and baffle him. He has severe face blindness. He gets no information from face unless it's smiling or frowning.

He also thought (WHY?) whatever he felt or needed, everyone else felt like him. If he was tired, hot and cranky, everyone else was tired hot and cranky. There wasn't a reason to talk because of his belief of a hive mind. What I feel and need, is what everyone else feels and needs.

DH told me it wasn't until he was almost in high school, that he realized people are totally separate from him and have no clue what was in his head.

My husband was never truly non verbal, but this may give a little insight what someone on the spectrum might think. Believe me he talks. A lot. But his communication skills are terrible.

He thinks communication is just the words spoken. It's the unspoken words, tone, context, facial expressions, and the body language that screams louder then the actual words.

"We should meet up sometime for lunch." I know a good 90% of the time that is said, it's never going to happen. My husband can't understand why it just doesn't mean exactly that.



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20 Apr 2020, 4:45 am

SharonB wrote:
There is an ASD gentlemen on this board who didn't talk until 5 and is now highly articulate.

You mean kraftiekortie? He might have some insight into this topic from personal experience.


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08 May 2020, 8:59 am

Agree, focus on the immediate future and try out different communication methods.

Keep an open mind as you try to figure out what helps him and what hampers him.

He may be GOOD at communication verbally but is not ready to try for whatever reason. He may be developing out of order- like he may reach a milestone for an 8 year old first, and then go back and accomplish the 3 year old milestones. You just can’t know while he’s so little.

Watch out for him with therapists and teachers. Sometimes these people are overworked and are not devoting the attention and time to your child that they should. Trust, but verify, as they say.

He’ll be okay and so will you. Things always work out the way they should.



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24 Jun 2020, 5:24 am

byathread wrote:
But the reality is that not having speech before the age of 5 is bad for their independence as it means he will be low functioning (even if he is not intellectually disabled). All his therapists have told me that. And while everyone thinks he is pretty smart no one know why he is not talking. He can recognize words and possibly read. None of us had any idea.


I started a thread for non-verbal autistic kids and a lot of it is a biography about my daughter. Feel free to check it out as you might find some interesting stories from other parents that are relevant to you.

My daughter also had a normal development and was hyperlexic and verbal from about 10months. Then she went non-verbal. She did not speaking till she was 6.

As with your son, my daughter's therapists unanimously agreed her prognosis was poor and we should brace ourselves.

We ditched professional help (what was the point they had nothing to offer) and decided to do this ourselves.

We tried parent run ABA (both my wife and I enrolled in ABA training). ABA is a little harsh but through a few hours of repetitive training a day we noticed improvement in our daughter's attention. ABA therapy seems to have helped our daughter concentrate on tasks and she was also concurrently improving speech so we went back and did speech therapy once a month from the time she was 6. All of this was very light as we did not agree with the Lovaas method of intensive ABA of 40+ hours a week as that is torture for the child.

She went to mainstream school but she was always behind the other children so we put her on a ILP (independent learning plan). Mainstream school was very hard for our daughter and she was put on medication to control her mood/outbursts which were frightening the other kids and staff.

We persisted with mainstream primary and she is now in mainstream highschool. She has remained on ILP (I frankly have little respect for mainstream education curriculum anyway) but we focused on developing her independent learning skills.

Through developmental changes that occur independently she had made great progress in leaps and bounds. She recently turned 15 and although she doesn't have friends outside of school she has people she is comfortable with associating with during school and she is talking and functioning normally. Nobody thinks there is anything wrong with my daughter, she is a beautiful girl who is fiercely independent catches public transport, uses mobile phones, computers, rides a bike, plays chess online with NT kids and is into sports and athletics. She has aspirations to do great things like fly aeroplanes :lol: and we support all what she does,

The gap in her social skills remains the only thing we continue to work on, the years of non-verbal does have some long lasting effect but considering all the negative things the therapists told us she turned out just fine :D

We are lucky to have her (and frankly I don't deserve to have such a child) we love her to bits.



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24 Jun 2020, 5:39 am

This is the side of Cyberdad that we rarely see.

I wish we would see more of Cyberdad the Dad.

I went to a research camp when I was 5. Back in 1966. I was given intensive speech therapy. No ABA, though my mother did ABA type stuff for years before I went to the camp.

When I developed speech, I became aware of the world around me. I got out of the darkness. I was an Aspergian older child after being a classically autistic toddler.

Just like the kid in a biography known as “Elijah’s Cup.”