WHY does he do this ? Please help me get this.

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What, exactly, is offensive about telling people who are not in my shoes that they really are not in a position to judge me because they are NOT going through what I am ??

It is one thing to give advise and opinions, and another to question someone's motives for wanting their child to do X, Y, and Z. There is a specific reason I posted on a forum full of autistic adults - some of these people have probably been where my son currently is, and they may have answers to questions that I don't.

What I have a hard time with is being questioned WHY ? WHY do you want your son to talk ? WHY do you think it is so important ? WHY shouldn't he be non-verbal ?

WHY ? Because I want him to be as functional as possible one day. I don't care if he never goes to college, never has a job and lives in my basement for the rest of his life (and mine). But I do want him to be able to tell me when he is hungry, when he is tired, when he is sick, when he is hurt, when he needs help or when he just wants some love & affection. I want him to be able to communicate about everything that happens to him - whether he chooses to or not, is a different story. It is Important for me that he has the ABILITY to communicate. He still retains the right to make the choice not to about things that feels are not important enough to talk about.

Acceptance is all well and good - no parent will reject a child who has challenges. But acceptance does not mean not being ambitious for one's offspring. The two are not synonymous.

The irony is that the ones who most call for the "accept him as he is " dogma are the ones who have NO NON-VERBAL kids and can likely have NO CLUE how it feels to parent these kids, and the worries, and terrors those parents feel over their children's futures and long term prognosis.

My fear is that I won't live forever. As long as I breathe, my son will be safe, accepted and loved. My terror comes from knowing that I am mortal. One day, I will be rotting 6 feet under the ground, and leave this defenseless child behind.

I recently met a woman at an autism support group who used to work with non-verbal autistics. She now has one herself and she tells me she agonizes over her own child's eventual outcome because she knew what these non-verbal, low functioning adults went through daily. The quality of their lives, she says, were very poor. She even recalled a time when a "caregiver" (note quotes) grabbed up the remains of other people's meals, mashed them up in a processor, and dumped the resulting goo in front of her "charge", commanding him to "eat" the gooey mess. And, she would never have been held accountable for her actions because her charge would never have been able to talk about how she was abusing him. She was busted solely because this woman had walked in on the scene just in time. We all cried when we heard this story. THIS is why I want my son to talk or communicate.

We all pride ourselves in being civilized humans, but abuse of the disabled happens in this day and age. Learning about instances like this add to my terrors for my son. I don't even need to look into the future. I send my son to a special ed preschool program. He cannot tell me what happens during the day, how he is treated, what he feels about the class, the program, nothing. I have no way of knowing how he is doing behind those closed doors, and what happens to him inside. I merely have to take his teacher's words for it that he is "doing OK".

That is more than enough reason for me to want him to communicate. I don't want someone else to tell me how MY SON is doing, what he is feeling, or what he needs. I want to hear it from him. Straight from the horse's mouth, so to speak, not hearsay, especially where MY boy is concerned.

All I was trying to point out, personally, is that I understand your desire. We are very literal people and when you state things such as him being able but not willing, or that speech is what separates us from beast, you are making some nasty comments, as far as I can personally understand.

Try by all means to teach him how to communicate, but if speech does not work, find other means and introduce them to him soon. What I am saying is, there are alternatives and lack of speech and your obsession with speech being "the way" he can tell you anything, will hurt you both.

I understand. I wish my mother had such determination when I was being bullied and abused by peers and adults and wished to help me.

^^^THIS^^^

He's only 3 and a half, he probably just wants to explore his world and see all the beauty and interesting things. Just let him explore and babble and sing to him and read to him and be excited about all the little things and figure out how to listen to what he's saying to you already through his body.

What is it you want him to say to you?

I hope you have some time before he's on his own! I also wish parents of autistic kids would more often take an interest in fighting for the rights of disabled people instead of just hoping their kids will escape that category. Verbal autistic adults get abused as well. Anyway, as mirror mentioned, there are alternatives to speech, as far as communication goes; it's also not unheard of for autistic children to begin speaking at four or later. The panic that's showing up in your posts doesn't seem conductive to learning. Kids can pick up on strong emotions and pressure and shut down even more, just going by my own experience as a child (and as a mom of two kids on the spectrum). I can't speak for the others but by saying "calm down" and "accept" I'm trying to put myself in your son's shoes (from what you say) and figure out what would help him to be more willing and able to communicate with you.
I think what people are getting at with "why speak" is that there are a number of autistic people who communicate in alternative ways. Obviously it's undesirable to be completely unable to communicate, but emphasis on speech only is a bit like denying a wheelchair to someone who needs one because walking is "easier".

Just a few single words would be great, for starters ! Rather than stand by the fridge and cry, it would be nice if he could say, "Milk" or "Juice" or "Candy". He loves to swim, and he knows the word "pool", so it would be great for him to request some swimming time by saying, "pool". Things like that.

For now, I don't expect anything more than one word at a time - not even phrases ! Even typically developing kids start with single words and I just would be happy to hear those words on a consistent basis. I follow the "one up rule" and use only one word at a time with him, so as not to overwhelm him. I model, model and model some more... Maybe he will eventually catch on.

He had an ABA session this morning and his therapist claims that he said, "ookie" whilst looking at the cookie jar. His teacher also frequently tells me that he has some word approximations. While I am delighted to hear this, it also makes me wonder why he never uses words or word approximations with me ! BUT, it could be a LOT worse, and he could like be the completely mute, apraxic 4 yr old.

The other thing is that he does use words at times, but then abruptly stops. I just don't get his language development - even speech delayed autistic kids do not lose words once they finally begin talking, so I have these giant ?????? flashing across my brain every day.

Yss, I understand what you are saying. I will get out our PECS book and start using it,

I am trying consciously to curb my panic and anxiety but it is very difficult for me. Especially because he DOES spout out real words on occasions when he is really mad about something....

Should I wait this out, do you think ? I really would appreciate your feedback since you are on the spectrum and parent children on the spectrum. What finally worked for your Mom and helped her get you talking ?

Also, there are many parents of children who advocate for autistic and other developmentally disabled children and adults. The sad thing is that we cannot prevent every single case of abuse and mal-treatment, so, yes, it is only human that we hope that our child will never be put in that situation ever. This does not mean that you don't look for other vulnerable individuals, of course.

The father of a severely autistic 19 yr old put it eloquently to us a while ago. As long as your kid is in school, you get highly qualified, Masters degreed people to work with them. Once your child leaves the school system and enters the "real" world, you are lucky if you get high school grads making minimum wage to work with them. This results in the explosive combinatiom of a frustrated "caregiver", doing the job solely because s/he can't get anything else, and a vulnerable adult with significant / severe needs, and it is very little surprise that this is a situation that is ripe, breeding ground for abuse & mistreatment.

That is the sad reality of the situation and I sincerely hope that changes soon.

Of course talking is a useful skill. Let's do something here though: Think about why talking is important. What purpose does it serve? It lets you get your thoughts from your head to someone else's, right? So you want your son to be able to communicate, so that he can tell people what he's thinking, what he wants and feels, what he's interested in. That's the end goal. Communication is the important thing. The exact way he communicates is not as important as there being communication.

There are some of us here who may sometimes be able to talk, but not truly communicate. Sometimes I will be just following the patterns of conversation, and my speech sounds reasonably communicative--but it isn't. It's just following the patterns. It's not saying what's in my head. Sometimes I say things that are factually incorrect (not in the effort to deceive, but simply because they fit into the conversation), or spout pre-recorded stuff, often about special interests, instead of what I should really be saying but can't put into words and sometimes can't even understand should be said. I am usually very articulate--but sometimes my speech doesn't say what I want it to say. So "talking" doesn't necessarily mean "communication". And "communication" doesn't necessarily mean "talking". Sometimes when I can't talk at all (which doesn't happen very often, but can if I'm extremely stressed), I can keep the ability to type and get messages out that way. I don't carry a communication device because of how seldom it happens, but many autistic people do.

It's often been said that when an autistic person does something successfully, it is forever held against them. If I do something well just once, people start to assume I can always do it whenever I want. That's not true. The peak skills, the ones that are most tenuously held, are not always accessible. It is entirely possible that your son can use words occasionally, but not always. That he has used words before means only that at that particular time, that was possible for him. It doesn't mean that it's always possible. And it absolutely doesn't mean that he "doesn't want to" talk. He doesn't just have to learn how to string words together; he has to learn what things are useful to say, who to say them to, when to say them, and how to figure out what to say in response to the events around him. All that stuff is pretty complicated. He's a little kid, and it doesn't come naturally to him. It's probably going to take time. Slow and steady.

Alternative/augmentative communication aids can help bridge the gap when speech is unreliable, or for those just beginning to learn it. The concept of communication itself is something that should be taught. Sign language, PECS, and other communication devices help a person understand how a conversation works--that you can get information from your head to someone else's, make requests, point out interesting things, or get information about what is going to happen. Far from slowing the development of speech, AAC tends to support it, so that those who use methods like PECS learn to speak faster. Even after speech is reliably available, some people keep AAC devices around to serve as back-ups. Others use more mainstream methods of non-speech communication such as sign language, e-mail and forums, or text messages. I much prefer to write than to speak, when I can. If I really need to get something across, I write. But writing backs up my speech: I learned to read early and fluently, and by reading I picked up speech patterns and learned how language worked. And even today, when I can't figure out how to say something, I can sometimes mentally write it and then read it aloud from that mental slate.

Honestly, don't panic. Your boy's development sounds just about right for an autistic kid; a lot like what many of us remember from being that age. (At his age I had pre-recorded speech and echolalia, so I was more advanced; my problem has always been with communication more than speech itself. But you'll find plenty of WP people who remember learning how to speak, and a few who still don't, and use other methods to communicate.) He sounds like he's figuring out speech on his own. Some practice with communication, perhaps some speech therapy, some backup methods, and sooner or later you'll probably be wishing you could get him to shut up. We can talk people's ears off when it comes to our special interests.

Yeah, you're worried that he's going to be mistreated because he's disabled. I get it. I worry about that myself, for all the younger autistic kids I feel I'm a little bit related to, and a little bit responsible for. I had to live through some crap myself, and had to learn that I was a lot tougher than I thought I was.

But--you seem to be taking it as a given that disabled people get treated badly. That's something that's been hammered into you by our culture until you couldn't help but believe it; I know, because it's been hammered into me too. I'll tell you a secret: Our culture is wrong. Abuse of disabled people is not an inevitable fact; it's something that can be changed. We used to have black slaves; now we have a black president. We used to deny women the right to own property; now we have women who own companies. Disabled people are making headway too in our own civil rights movement: We have the right to be considered equally for employment, to access schools and public buildings. Things are getting steadily better and better, because we're learning that we are not second-class citizens and don't have to put up with people trying to put us in what they think is our place. Your son is only three. When I was three, it was still okay to stick disabled kids in a little room at the back of the school and warehouse them until they turned eighteen. Now, I'm receiving comprehensive support as a college student. When your son is thirty, things will be even better. So stop worrying (yeah, easier said than done... still worth a try though). Stand up for him, and teach him to advocate for himself. Right now, all that means is you make it clear that nobody gets to be mean to him, and that it's okay to get mad, and that you're always there for him. Later on he'll be learning more complex things like how to arrange for accommodations and work with support people. But right now, he's just a little kid. Let him enjoy his childhood; give him an environment where he can learn interesting and useful things, and listen to him when he says things, whether or not he uses words to do it.

That post^ conveys a lot of how I feel about this subject.

As a personal example I have always been very verbal, but to this day have a hard time with the actual rules(turn-taking, staying within the context). The Internet and messengers made it easy, (turn taking is obvious) but it did not help with contex.

Today I was out with my family and they where discussing scooters. I know a bit about them so I started talking about the diferent models, sizes and colors I had seen at the store to discover that the focus of the conversation was wether or not to use them to get somewhere. It did not dawn on me until everyone was irritated that modes of transportation to get somewere conveniently was the focus, not scooters. Understanding that sort of thing is hard and harder when you are expected to function at such levels all the time.

Sometimes I get it, sometimes I don't and people always expect you to be able.

I thought the actual scientific difference between human and animals was the ability to reflect and think about the surrounding nature, and the knowledge of the own existence.

I just want to mention here, that we DO understand whats the big deal is with using language. God damn it, WE are the one who have to live everyday with the lack of our worse ability to talk. So do you think, that we need YOU to tell us, that many of us have to endure every day mis advantages because of that? Do you think we are so dumb, that we need you to remind us, because we are only able to remember for 1 minute?

And what are muted people for you? Able to work as universities, but according to you, they should be put as animals and beasts into a zoo? O_o Cannot talk = idiot?

Maybe try one time not to concentrate on talking but more on WHAT and WHY you wanna talk. To tell us the misadvantages of not talking is like telling a blind person, why seeing is so important. I mean i am not blind, but only one minute of thinking tells me, that the last thing on earth a blind person needs is me telling her what misadvantages she suffers because of her "not wanting" to see.

And if you really believed into your example you could buy yourself a parrot. According to what you told us, because of its talking ability it would be no beast, but human. So I dont think, that you really would believe such things, so lets agree that theres absolute nothing intelligent and "humanous" about talking, without a mind.

I would want YOU to understand now, and because of that, I am trying to say it the easiest way possible to me. None of us, including you, knows, how much your son will be able to talk. And it is ok, that you would want him to talk. There is nothing bad about that. Talking is not the difference between humanity and beasts, but talking is the easiest way whe Homo Sapiens share, to share our mind and our thoughts together. To avoid that leeds to big misadvantages, you dont need to tell us, we experience every day. And the last thing you need to tell us, is that WE are the ones, with the misadavantages because of that.

So I am fully aware, that being able to talk better, would be a great advantage for me. Believe me, I would love it if i was not completely tired every day i come from work, even unable to socialize with my partner as much as I would, or meet me with my friends, Or meeting my friends only once a month because I am always that tired. I dont need you to tell me, that my life was better if that little bit of talking I cannot avoid, wouldnt take all my strenght, energy and ressources every day, leaving me sad and tired in the evening.

But that doesnt change anything. Would your life become better, if you were the worlds best chess player? Presumably yes. So why dont you do it? - Because you lack the skills to do so. Sure, you can train a lot, but you need some natural ressources for it, that some people have and some dont. And no matter how much you try, if you dont have the ressources, you will never be Chess Worldmaster.

That doesnt mean, that there would be no sense in training Chess every day. So even if you will never, never be able to play against a worldmaster, you normally will become better with training. But do you think, that your parents would have motivated you to play chess every day, by forcing you to do that all day?

And by all Saints, I know, according to you I am an idiotic, dumb beast, (or at least a litte bit, because I thanks god I am still able to communicate with that primitive thing called letters and writing, the foundation of humans knowledge), but please never ever try to tell a misadvantaged person, that he lacks misadvantages because of his misadvantage. "He Mr. Wheelchairdriver - I really want to mention that you seem not to understand what the big deal is, with using feet! It is a big deal because without feet we are no more than worms and snkaes."

There is nothing bad about it, if you try to inspire your young one to talk every day. Just as there is nothing bad about it, if you tried to inspire your child to play chess every day. But inspiring means not to force him until he throws the chess board after you. ^^

I dont know where you got that with the "window" when a child is able to learn to talk. But if I am not wrong, this normally means NTs. So in the front of your head people normally have a part of the brain, that enables you to learn everything that belongs to talking by its own. While the aware part of the brain still lacks the skill to stack some cubes on each other, the unaware "Speak"-part of the brain is already massively training. Watching others making noises, intuitive knowing, that the different mouth and lisp motions are linked with the different sounds, motivationg the baby to train them, at an age a child isnt even understanding itself, why its doing so. This is a natural intuitive part of the brain, working on its own, giving us the ability to learn to communicate intuitive long befor we are mentally able to do so. Bad news: The part seems to be damaged.

Good news: A big amount of your brain has free space to learn, everything you want. But until the age of 4-5 we cannot use this to our full potential. So a baby cannot choose willingly, that he wants to replace the non functional intuitive speech part of his brain, with his active brain parts. You are not able to do so, when you are still trying to find out, why everything falls down or how to get those hands moving in the directions you want. When you are older, you can try to. But you will have to start at zero. Meaning: Learning the connections between moving lips and noises. Training to make noises by will. (And yes that means babbling the same "nonsense" over and over again. Thats how children train. If its a 9 month old child, training because his subconscious speech part tells him so, or a four year old, makes no difference. You have to start at zero and that noises babbling is zero.

And it will helps noone not to accept physical limits. So I dont know the word in englisch, but according to IQ i would be gifted and have at least around 130. Maybe more, but beyond 130 you need a special test to know the exact IQ. Shortly you could say that this means, that my brains runs faster then 97% of th rest of humanity. I have read books about body language, face language, social talk, violent free speech and so and so on... When given Photos I am able to identify the emotions of the person quite well (at least the basic emotions.) And still i lack in normal talk because its so much at the same moment: Concentrating on moving tongue and lips for creating words, pushing some melody in it so you dont listen like a robot, thinking of what words to use in this situation and fitting to the person you talk to, while concentrating on the own body language and face language (How shall my eyes, what expressions shall my mouth have and so on...), and during all these, all these thoughts and all the movements you also have to think about, you have to watch your opposite, his body- and facelanguage while filtering the noise he produces out of the surrounding noise, to fit the noises together, creating words, sentences, translating them into meanings, I have to think about, while thinking about everything else.

You have a functioning special speech part of the brain, telling your ears without your will, that spoken language is important, so noises produced from humanity reaches your brain already filtered. Your speech part does the work, whenever you hear human talking, you dont need to manually do all this work: You just receive the words, and they already have a meaning to you. And you dont watch people and try to filter manual informations in your brain, about how the eyebrows are falling, if there are wrinkles on the forehead and so on...you just watch someone and say: "Hey, this guy really looks angry." which is also an important part for talking.

Its also a big problem for me, that people are used to it, that you are able to think about the meaning of the spoken, or that you can do small actions while talking. So its really annoying me, if people want me to think about something: And then they are talking every 10 Seconds something, so it isnt quiet. So I start to think about an solution of an problem, 10 seconds later i have to stop, because I need my full concentration, because someone is talking with me. So when you want your autistic little men to understand something, i would recommend you to have a book with you. As long as he seems to think about something he experienced, i would not disturb him. He will only be able to learn such heavy stuff, by thinking over it, and when he gets disturbed every time he thinks about something, it seems to him, that others dont want him to think.

So I dont know and you dont know how much your child is effected: But if that speech part of his brain is damaged then he cannot understand that you "Just want him to talk some words." It could be, that you are asking him to built an skyscraper. Start by showing him how to produce bricks.

If he is a visual stimmer he may have visual processing differences that make it difficult for him to focus properly.

With autism being able to do something one day does not automatically mean always being able to do the thing.

I would give PECS a shot as it will show you whether he is reluctant to communicate or has an inability to speak (at times).

Hi HisMom,

First of all, I want to say that I think your fiery determination to help your son succeed is fantastic, and so is your initiative in talking to adult autistic people to understand him better. I think any misunderstandings which occurred over your posts are simply due to the fact that autistic people can be very literal (please forgive us for that). I think your son is very lucky to have a mother so determined to help and understand him.

Callista's post was excellent and I agree with all of it. Trying some creative alternatives to verbal communication (sign language, picture cards and diagrams, etc) can produce a great avenue to the beginnings of communication which will hopefully put less stress on him, enable him to feel understood and form a better bond with you, and enable you to understand him better, which will lay a wonderful foundation for increased verbal ability in the future. Also, I wanted to add a few more things about the experience of verbal communication by autistic people. If you can learn to imagine how your son is experiencing things and take actions based on your understanding of his perception instead of based on the way you perceive things to be, you will be able to parent him fantastically, no matter what challenges arise.

I have noticed that sometimes (not always, as things are progressing), what is taught to parents about raising autistic children is more about describing and dealing with the behaviours which are outwardly displayed than about understanding how the child thinks. A good example are carers who want to try to stop the child stimming because that behaviour causes neurotypical people discomfort when they see it. Stimming is a behaviour autistic people develop to calm themselves because they are so easily overwhelmed, and trying to force them to stop is an action that makes life easier for neurotypical people but makes life more distressing for the autistic person (of course, it's a completely different issue if they naturally stop because they no longer need it, which is genuine progress). In the same way, the notion that verbal communication has to be the first and only form of communication is a "neurotypical-centric" view which is perfectly understandable because that is the way our culture works, yet does not take into account that the autistic person's communicative strengths may lie elsewhere.

I find as an adult autistic person that talking is often hard work - it can be hard to find the right words, difficult to vocalise them, and people sometimes talk too quickly for me to keep up. This is in no way related to my level of intelligence or ability to understand language; as you can see, I am able to express myself in text perfectly well, and many autistic people with limited verbal ability understand language perfectly. Some are extremely articulate writers and have written books (you might be interesting in watching this video, which is an inspiring example of a severely autistic child finding their "voice"). Here are a few other suggestions I hope will help:

-To an autistic person the world can feel very chaotic and confusing, and the more is going on, the more difficult it becomes. I have trouble keeping track of multiple people talking to me. If possible, always practice with him one-on-one in a quiet environment, and remember that what might seem a normal environment to you might be filled with distractions for an autistic person because of the inability to filter sensory input (colours, patterns, lots of objects, background noises) and therefore make it more difficult for him to focus on or even hear what is being said to him.
-NEVER try to force anything out of him. I cannot emphasise this enough. Difficulties communicating are worsened by stress and even if he doesn't show outward emotion in the way you expect, we can and do recognise and feel upset when people are frustrated with us. If something seems to upset or distress him, stop doing it. Looking away when presented with something is a signal that it causes him sensory distress and it is really important that you learn to be sensitive to these signals. This will not only help him progress, but will also help him to trust you. You can try whatever it is again at another time, but if he repeatedly demonstrates distress at something (like the flash cards you mentioned) you probably need to conclude that it's not a method which works for him and try something else.

I wish you the best of luck with your journey. Your fear comes over in your posts. I know it's difficult, but if you can, try to reframe it in positive terms and feel joy and achievement at his successes, instead of fear at his failures. That will make life a much more enjoyable adventure for both of you.

Have you tried to sing with him? Maybe this will help him practise the motor skills involved in producing speech and thus speaking will become easier and less stressful to him.

Then he will have to understand the advantages of speaking, for instance getting food by asking for it. I don't know if this will be too traumatic, but starving him a bit until he asks for food might help him understand that there is a point to speaking. I think he needs to see that speech will be a valuable tool to HIM (I don't think his mother's longing for his soft voice will be sufficiently motivating for him - maybe he just finds that annoying).
I have heard this story about a boy that didn't speak. Suddenly, during dinner he (fluently) asked for the salt. His parents were stunned: "OMG, you speak - why haven't you spoken before?" "The salt has never been missing until now," he replied.

Somebody posted this in another thread. This autistic girl doesn't speak, but she has learned to communicate in writing:
[youtube]http://www.youtube.com/watch?v=HBehfBcEYsg[/youtube]

My son made it to just about 3-1/2 as non-verbal in much the same way as you describe - at that age he mostly babbled with just a few understandable words thrown in (we called it Trentonese as it almost sounded like he was speaking some unknown language mostly because of how seriously he went at it).

He was wavered into Head Start for the speech therapy they offered. Then one day a short time before his fourth birthday we noticed that he was speaking mostly English, the whole change over took less than a couple of weeks. One note - he started reading at about the same time and today reads at a rate of hundreds of words a minute.

While everyone is different I would say that there is a truly excellent chance that your son will become verbal.