.. | Autism PDD
THe boys had no speech at all at age 2, not one single word. Now at age 4.5 they are just now having truly functional language. I am finally getting yes/no answers and they are trying to tell me things and point spontaneously and show me things. (I count truly functional language as language that communicates like bopeep is talking about) The darkest moment for me was around 3, words were coming in but it was mostly labeling or just these random words popping out with no connection and no meaning, there wasn't really any communication going on with those words. They would still stand there and scream when they wanted something. Screaming seemed to be their main mode of communication, and I did worry about them never being able to use language, but they are starting to now. I just took a break and walked in my room where they are watching baby einstein and they show Degas paintings and Nikolas says "dance". My mouth fell open that he connected that picture with the word dance cause they don't do that on that tape. Anyway, as for the MR being institutionalized, my BIL is severly MR, is 53 years old and has never been institutionalized. Of course that was the first thing they told her to do, and she refused. He lives a pretty full rich life.
[QUOTE=Lalloo75]I fully agree with everyone !!!! Rita my ds is 3 and has a few words and the thought of "nonverbal" crossed my mind and especially when u read things like 50% of children with autism are nonverbal!!! It freaks u out!!!! [/QUOTE]
I fully understand your fear, but this 50% figure does not mean that 50% never will speak. Perhaps 50% of very young ASD kids are nonverbal, but the vast majority go on to speak. Like I said earlier, it is normal for young ASD kids to be nonverbal. They develop language in a different way than NT kids do and a nonverbal 2/3/4 even 5 year old is no cause for alarm.
And, as was already said, speech can come at any age.
The emphasis, anyway, (IMO) should be on communication and interaction, not speech. Play with your kid to facilitate his communication and his social interaction, not just his speech. Speech is only as functional as the relationships and social communication it's built upon. A child that doesn't speak can have great social communication. Then, when speech does develop, it will be built upon thorough social communication.
MOST of the teenaged kids I know who have autism speak functionally. That does not mean they speak well enough to go to college, but they DO communicate fairly freely. Some use language only to get their wants and needs met, but most use it to ask social questions or to share social thoughts. Many very language disabled ASD teen still are able enough, language-wise, to hold social conversations, especially if those conversations focus on their real interests. An ASD child who is not talking by age 3 is common. If the child is not talking by kindergarten, that's a much more significant worry. However, I have seen noverbal kindergarteners turns into adequately verbal teens. Just keep plugging away. This is a MARATHON, not a sprint.Jim Sinclair (autims advocate) claims to have had no spoken language before 12. You can google his name to read some of his essays; some are quite good.I've known many people who were a lot older than six when they developed speech. Sharlet had no speech until it started to develop 6 months ago at 3 yearsold. She still has no functional speech but has around 2 dozen labeling
words. I think she will eventually have some functional speech. If your child
is only 2 I'd say there is plenty of time and probably no way to know how
much speech they will develop.
good LuckIf I remember correctly, your dd is still pretty young (2?), so there is
plenty of time for speech to develop. There is also plenty of time to
implement alternate methods of communication. Some do signs, others
PECS. We have had more success w/ PECS, but have also (& still) used
signs as well. Our dd is now verbal, but still needs those visual cues & we
also use PECS for her visual schedules.
I don't think you'll know for a while if there will ever NOT be language.
Docs can guess...for us, they warned us about 18 mos...well, dd was still
not making sounds at that point...but what do you know, as she got
closer to 3, words started to come. I've heard of kids becoming verbal at
5, 7, and even later.
I do not think this person is considered mute, but I could be wrong. I
believe it is 'nonverbal.'
We thought dd had vision problems until recently. But, now that she is
older, & has had some vision tests, we see it's a lot of sensory processing
issues & also simply part of her autism. Her eyes are very sensitive also.
She is now a VERY visual learner, which is interesting to us, considering
for so long we assumed she wasn't seeing. Same goes for hearing/
auditory. She even had an ABR test about 8 mos or so ago. She passed
it, so what we appears like hearing dysfunction in dd is actually auditory
processing difficulty. She is in ST, OT, & PT, so in a way we are
addressing all of that. But, our ENT said you can't really help that type of
issue until they are older (auditory processing), or at least better able to
communicate than dd can.
I do not think institutionalization would be the only choice. There are
plenty of people (w/ & without autism) who use augmentive
communication & are very 'functional' in the world. Of course, Stephen
Hawking is the only name comes to mind right off the bat, but there are
plenty, he does not have autism fyi. People used to think that deaf
children had to be institutionalized, but now, you will see deaf people
signing to one another everywhere. Alternative methods of
communication are really becoming more & more common.
No, to the MR kids either.
Hope this helps.There is absoluteley no way to tell if and when a child will speak so dont let anyone tell you she wont or give you any boundaries of her progress...I was told Sarah may never talk at 2.8 years old and she talks nonstop...no one has a magic ball of your child future and you can drive yourself crazy worrying about it..just do what she needs each day and never give up hope:)
The awesome and very knowledgeable director of my son's autism program told me that it is well within the "normal" range for ASD kids to not be very verbal until age 6 or even 7. She said that, by far, most of the nonverbal 2/3/4/5 year olds go on to become verbal.
If your child is 2 or 3, you have every reason to put your mind at ease for now. You can work with him A LOT on communication (not necessarily speech, but social communication) in these early years and it will make a huge, positive difference.
In short, a nonverbal 2/3/4 year old is perfectly "normal" in the autism world and the vast majority go on to learn to speak.
My ds started finally using words at about 3, but just for labeling. He really didn't have any functional communication until the last 6 months to a year, but it is still very scripted. He is not exactly "verbal" yet, but isn't really nonverbal either. You still have time.
PECs were/are a big help for us too, although they are mostly used for visual schedules at this point.
I've heard of kids gain verbal even into their teens, and I wouldn't be surprised if some started getting it even later if people keep working with them. Brain development isn't as stagnent as people have assumed.
When did U know that there would be NO language?You don't ever know that.
Is such a person considered mute?
Yes.
What if such a child is not very visual or auditory-responsive, will this child never develop
There's no such thing as "never developing". Deaf-blind children develop.
Would institutionalization be the only choice?
Never is. If it's presented to you as the only choice, fight it like hell, fight for funding wherever you live for people to live in the community. You will likely find self-advocacy groups fighting along with you. Talk to them.
MR kids - do they evntually need institutionalization?
Good grief no. There's nothing special about institutions. They're just warehouses for storing people. There's nothing good that goes on in them that can't be done in someone's own home, and there's a lot bad that goes on in them that is harder to get away with in someone's own home. They're not magical places that swallow up certain kinds of people to "care" for them, they're a horrible injustice done to certain kinds of people and just about every sort of person who ends up in them fights it in one way or another.
Seriously, go to... let's see My Life Is a Gift (a website by the mother of a son with profound disabilities who has lived in and gone to school in his own community his entire life). The Community Imperative (I was at that conference, and there were a lot of people like Ben there, who do not live in institutions because people have made things happen outside of them). Etc. Seriously get to know this history and stuff and then join in continuing it.
And for that matter, one of the people (not a kid) who used to post often to this board had a diagnosis of MR.
second. It's more important that a person is able to communicate, than the
form it takes.
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Right on!! LOVE THIS!
My son was non-verbal until he was 4, less than 6 months ago! As Autumn said about the PECS..that is what got my son "talking" in pictures then he began labeling with words!!!!! Now he can label most things and is beginning one word requests! We thought for sure at 3 1/2 we had a non verbal child! I can only hope that one day we'll have a conversation, but for now I'll take the words!
Actually, you should push for communication first. Speech second. It's more important that a person is able to communicate, than the form it takes. I love this thread... keep the encouragement coming guys
Could you elaborate?.Some fields in colleges do not need ANY functional langauge? How much a computer programmer need to talk? you go to the classes and give the tests...
Daddy
Fred,
I see what I can find out about Jim Sinclair. Sometimes when people say non verbal they mean their child is not using words to communicate but they can repeat things. My son tries very hard to communicate through pecs, gestures and a few signs but has no speech.
Gtto,
That is good to hear. Now I need to keep the school movitated to work on speech along with the communication. Did these people who were older than six learn speech through a certain kind of therapy or did it just come out one day? I have the feeling, although it is getting weaker, that one day my son will wake up and start talking. He does talk in my dreams though.
Rita, my 8 year old son did not have ANY language until almost 4. most of what he says is echoic but he does use phrases he has heard at the proper time (ie: want a pretzel) . my son FIRST talked with pictures we had laid out (PECS). We had driven home from a doc appointment the day after thanksgiving and people had just turned on their Christmas lights. our son came in the house, went to his pictures, you could see his wheels turning as we thought, and finally he handed us the picture of 'want to go outside'. (to see those lights again!) WE WERE SO THRILLED that of course we took him out. As I said eventually language developed and now he has a lot of words and even sentences, although pronouns are WAY off!
Your sweet daughter still has LOTS of time - try to be patient and wait and you could consider pictures if you want. If you do I would start with only TWO pictures - both FOOD - one you know she really likes, the other just so - so...and have her hand you the picture and reward her with the food....
YOU ARE IN ALL OF OUR THOUGHTS RITA, please take care!
Oh - btw -GTTO, excellent comments! Our son still is very poor at 'communicating' but he does have language...
which reminds me of another thread where Fred mentioned many people think you have to be non verbal to be truly 'autistic' but of course that is not true as he says...our son is SEVERE on the spectrum and has language!
gtto-you are right communication is the goal. I just long to hear my son's voice.
He does use pecs but it is at the moment limited to I want. What he is thinking is what i want to hear.
I met a little boy in the park the other day, very echolalic and slow to come out with words, but he saw my communication device and enthusiastically came over and typed his name on it. And hugged me.[QUOTE=gtto] I met a little boy in the park the other day, very echolalic and slow to come out with words, but he saw my communication device and enthusiastically came over and typed his name on it. And hugged me.
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SWEET!
yes tr3ndimomma, i hear you about conversation - i still WISH for it at age 8 - but hey, words are nice, even echolalia - when i say 'I love you' and he parrots it back - I'LL TAKE IT![QUOTE=gtto] I met a little boy in the park the other day, very echolalic and slow to come out with words, but he saw my communication device and enthusiastically came over and typed his name on it. And hugged me.
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I think that's the coolest thing I've "heard" all day!
That is SO AWESOME!Very Cool!I asked for the school to evaluate my son for the use of an electronic communication device. They refused saying he is not ready yet. The bad thing is he is obsessed with all things electronic and like to stim on the computer,tv,dvd,video games ect.
edited to add:
gtto I love the story about the boy in the park. Any such stories you would ever care to share especially about non verbal children learning to speak or communicate by typing such as yourself I would LOVE to hear as it fuels my hope. I know he has alot of intelligence, I see it in him, I can feel it and it comes out when it suits his purposes.
Are electronic communication devices expensive? It doesn't sound like it should be, but I'm guessing that they are. Are there standards defining the user interfaces for such devices, or does each manufacturer essentially roll their own?
THANKS so much gtto, your posts are always thought provoking and you have helped me - all of us - a lot!Also read the book Autism and the Myth of the Person Alone, which is by autistic people who are considered nonverbal or functionally nonverbal, but who communicate through independent typing or handwriting (or in one case also painting).I hear you gtto, the subject is not closed by a long shot. I just have to add it to the list of things I continue to fight for. I never even thought about it before I saw you type on you computer and another lady I saw on tv, Sue Rubin, I think was her name. How when she learned to communicate with her device people learned just how smart she really is. I feel when my son does learn to type out what is inside him people will see what I already know.
gtto, do you speak or only use keyboard and communication devices? Do you think that communication devices would help a 'verbal' person with autism express themselves better?I asked for the school to evaluate my son for the use of an electronic communication device. They refused saying he is not ready yet.That's a common problem for all people who don't speak, including people with CP and stuff. The problem is, how can a person learn if they have to wait until they're "ready"? That's like saying that a child's throat shouldn't exist because he's still babbling and not ready to talk.
"Not all autistic people are going to do well with them of course, but I know a lot of autistic people who have a strong preference for typing, and are more "themselves" in typing than speech, despite superficially normal speech."
I can testify to this. I am definitely far more able to "say" what I'm trying to "say" when typing than with speech.
Rita, I have 2 nonverbal children without language. I will address your questions as honestly as I can. But, I want to stress my children are not likely the same as your child. Heck, my children aren't even like each other.
1. a. Until my dd was 3 yo I thought "all" kids just learned to talk then I found out it may not happen for her in the typical timeframe or at all functionally.
b. I know that at some point my kids may learn to talk and that they will still likely have larger language difficulties.
c. when you say "language" I'm assuming you're talking about verbal communication. There are many forms of language and a big part is identifying your child's. It could be aural, haptic etc.
2. There are many causes and muteness is the end result of not having functional speech. "Mute" doesn't seem to quite fit with autism and would be similar to equating autism with blindness or deafness. Which it is similar but different.
3. Children have learning strengths typically verbal and visual are the mediums. But, some children are strong aural (music) haptic (movement) kinesthetic (hands on) etc these are less conventional and take some creativity to provide tasks that are of interest to these children. You can google learning styles.
4. There are augmentative communication resources and increasingly diverse teaching methods and toys with bells and whistles. An institution would have no more resources or one to one teaching ability/connection than a caring creative parent. There are choices of some of the following: group homes and foster homes and support at the family home and support in their own home or shared with a room rate. There isn't only a one size fits all spot like an institution.
5. I dont think MR is the main factor in institionalization. I think the biggest is providing a caring and nurturing environment when the child is young that pushes small steps and promotes tolerance. That works to decrease the incidence of stressful maladaptive behaviours that often become the catlyst of parent's not being able to care for their children and being able to stay in less supported environments. To me, it far outweighs focussing on factual academics.
My advice... is realizing not to view this experience from a typical perspective. Like if you had only saw and experienced things in the daylight. But with ASD you've been cast into another perspective of "night".
There are no chirping birds at night and you likely won't go to the beach to suntan. During the day we worry about our appearance and what other ppl think and we work in the reality of what is. At night, we dance, have romantic dinners, go to movies, look at the stars and dream of what may be. There are also things at night that we can't see and fear that come from our own minds. These are things at night and that are great, interesting, scary and different and that ppl who only experience "day" will never understand.
Just remember you haven't lost "day" you've gained "night". Maneuvering the two or when "night" meets "day" or "day" says "night" should be like "day" is a bit of a challenge but you can do it. Anyone can fight the battle for one day right?
~ Alice
I absolutely think that communication devices can be useful even for people who seemingly are completely verbal. Many autistic people -- not all of course, I know people who are the reverse -- have an easier time with typing than speaking, and may have more nuanced and emotional content to their writing while typing. Some autistic people lose speech periodically but can sometimes speak, and alternate between speech and typing (that used to be what I did, or else before communication devices, alternate between speech and silence or screaming or not-great behavior). Also, communication devices can be configured to use things other than words, which can be useful for people who have trouble with words (even if they can use them seemingly okay). And they can be configured to have preset words and phrases which can help jog the memory of people who have trouble remembering they can communicate about certain things.
Not all autistic people are going to do well with them of course, but I know a lot of autistic people who have a strong preference for typing, and are more "themselves" in typing than speech, despite superficially normal speech. There was a workshop at one autistic convention a few years ago called "On Paper I'm Free" that was all about this topic, and most of the people involved had functional speech most of the time, yet strongly preferred writing.
There are four ways in which Thomas communicates. These are:
1: Taking an adult by the hand and placing adult’s hand on the thing he needs help with, using said hand as a tool.
2: Being able to fill in the final word with a few questions or phrases that have taken him months to learn, usually with visual prompts to help him understand. E.g. it took him months to learnt to reply "hello mummy" and not "hello Tom". A lot of the phrases need to be worded a set way to help him understand.
3; Using delayed echolalia, or a few phrases repeated over and over. E.g. if he is upset he will say "Oh no, we gotta go through it", from "We’re going on a Bear Hunt". If I take a dvd out he will say "mummy disc dirty" every time as I had to clean one once and told him "Mummy is cleaning the disc. The disc is dirty." He will say these phrases regardless of whether anybody is with him. Or he will list everybody in the family and then say "family". If asked a question or a comment is made that doesn’t fit in with these set phrases (which are few and far between) then he is not forthcoming with a response.
4: Smiling or laughing or screeching when happy about something and crying when he’s not. However, it should be borne in mind that this is only one something really upsets or excites him.
Thomas cannot describe things, explain things, chat about things, give messages or join in conversations. He has a fantastic memory and can recall long stories and songs and he knows his colours, shapes and numbers and some letters, but these have all been learnt parrot fashion.
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