My sons behaviour is getting worse

I posted a question about my son Ross on the child behaviour fourm. I got a couple of comments back and they were really helpful. Ross's symptoms, if you like, don't really fit into any catagory within the austic spectrum. So now we are looking into a possaible PDD-NOS diagnosis.
The thing is recently his behaviour seems to be getting worse. He is now shouting and roaring, not really saying anything, just roaring. About 30-40 times a day for no particular reason.
Also on friday last week his older brother and sister had gone away with their aunty and it was just Ross and myself in the house. I put on a d.v.d (which he loves) for him to watch while I tidied the room. When I told him I was just going to tidy up he started roaring at me and finally after approx30 sec he shouted "no" at me.
I was shocked at his outburst toward me. I calmly asked what was the matter andknelt down to his level. After about a min of what I can only describe as pure confussion for him, he pushed me. I quickly stood up and he pushed me again. I fell back onto the sofa. He then tried to get a blanket from the bedroom but couldn't carry it. I got it for him and discovered what he wanted was for me to sit with him to watch the film.
Does anyone know if I should now expect more of these outbursts or if there is anyway to predict them?
I felt at such a loss to what I should do to console my child.

[mjthewriterdad]

If you watched the movie with him in the past, this established a pattern in his mind.  A "routine" if you will.  Maybe he wants that routine kept up?  I supose asking him to "use his words" is useless, right?

I knew this one child that just HAD to have his buzz lightyear and woody action figures as he watched toy story so he could act out the scenes.   We went to a get-together at someone's house and they had toy story but he insisted  (read tantrummed) the family drive 20 miles and get those action figures.  I think we just took him to another area and shot some hoops and played "horse" so he didn't watch toy story.  He did eventually return to the movie and calmed down.

As to predicting these outbursts, I think more information is needed.

[MJIthewriter]

I can't say what is causing his outbursts either. In my journals I noted some triggers that cause me to outburst.  Usually it is out of anxiety. This anxiety doesn't have to be my own either. If people around me are anxious I pick it up. The more anxious they are, the more anxious I get...If they are anxious at me then it gets to be a battle. I respond better to a calm environment with minimal yelling and snapping.

The example you showed us, sounds like his roaring is an attempt to communicate.  Somehow he will need to learn how to put his thoughts into words and if he puts his thoughts into words he needs to learn how to speak them.  It's a complex process.  If he understands language (for instance ask him to come and get something he likes), then chances are he is able to think words in his head. He knows what he wants but is unable to get those words out. I'm sure if he can learn how to speak words, he will prefer that over the roaring.  The roaring is likely his way of expressing frustration, if he isn't imitating somthing he saw on the T.V.

Being PDD NOS, I had delay in language. I remember having words, even speaking, but when I ask my parents, they can't tell me what I said because whatever it was I thought I said didn't come out.

Some autistics are unable to speak...but if they know language, they can communicate in other ways. Communicating by typing seems to be one of those methods with or without a facilitator.

If he is alone and roaring, it could be some form of imaginative play. Since you can't get inside his head, all you get to see what appears on the outside.

[NicolaMc]

Firstly I'd like to thank you for your reply.You are absolutly right.
This film would be one of his favorites and normally I would have made the time to watch it with him. Instead of  watching it with him this time I was more concerned about getting the room tidied for visitors calling that evening. Also due to my other two children being off school for easter holidays for that week, I hadn't been spending as much time with Ross as usual. Maybe I shouldn't put the film on in the future unless I can sit with him.

Ross has quite alot of words but his pronuncation is not very good and I find if he is annoyed or excited about something it's just like the words won't come out for him. He also understands words but cannot use them,eg. If you say to Ross, we're going to wash your hands,he will go to the sink and wash his hands but if you ask him what he is doing or what has he just done he will show you instead of telling you (he will gesture with his hands the action of washing hands).

Thanks again for your help.

[NicolaMc]

I'm sorry I didn't read the comments you both left properly and thought the two comments were from the same person.
I guess my reply is for both of you.
Again my apoligies.

[MJIthewriter]

I had trouble pronouncing words too. For instance:

"Supposed" I pronounced "Aposed" (I couldn't pick up the "S???") Later I pronounced it "Suppost" and I would type it that way and ms word would nag me to correct it.

Percipipation - I stuttered over that word and it came out a mess. I also confused it with participation. Likely I couldn't pronounce "participation" either.

Idea: I pronounced "Idear" for a very long time. (into mid childhood?)  I thought I heard someone pronounce it that way. (likely my speech therapist had an accent and I picked it up)

And there are words that escaped my mind, even today I can't speak without bumbling over... The aggravating thing about it is I "hear" myself pronounce the word correctly (or at least how I think it to be pronounced correctly) but try as I may when it comes out my mouth, it gets jarbled...

Same with sentences. The more anxious I get, the worse it gets. Another thing to note: when I "speak" something in my head it bounces around my mind a number of times and I may get different variations of what I wish to say.  When I speak one way, I may bumble and end up spitting out soemthing that is halfway between the two thoughts.

As a result I repeat my sentence. Sometimes I may repeat the same thing over, just because I don't like how it came out verbally. Other times I repeat because I don't know if the other person heard me. If they did hear me, I may not have gotten the response I thought I did.

I also have a tendency to show the same thing over to someone who's already seen what I was showing them. I don't know why I do this...  I guess because my mind is on rewind and re-run.

A lot of this is just random chat... but I ramble on in my head. Typing what I have to say allows me to delete and edit (except this forum) what I say, so I can get it "just right". With speech I don't get that freedom.

[NicolaMc]

It's interesting you should say you have to go over things in your head. Sometimes I find Ross in his room sitting by himself repeting a conversation someone has just had with him. Or when he goes to bed at night I'd go into his room to tell him so stop shouting and go to sleep, but when I get to his bedroom door and listen, what he's actually doing is repeting an arguement that he had with somene that day.

Do you think he might be 'making sense' of what happened?

[Sally44]

I have a 7 year old son with autistic spectrum disorder, severe communication disorder (including echolalia) and sensory differences.
I picked up on what you said about your son repeating dialogue to himself.  This may be echolalia, which is common in autism and it can be either immediate repetition eg. you ask the child 'do you want a drink?' and they reply to you 'Do you want a drink?'.  Or it can be delayed echolalia where the child repeats things he has heard earlier on in the day, week, year.  It tends to be DVD dialogue with my son.  He re-runs things he has seen on TV in his head and talks through the dialogue and acts out some of the moves.  Sometimes if he is watching TV he will cover up his ears and just watch.  Other times he will repeatedly remove himself into the hallway to repeat dialogue he has just seen on the TV.  I think he does this because of sensory problems.  He can only function through one sense at a time.  So if he is watching TV and he wants to put the dialogue with it, he has to leave the room, re-run the pictures in his head and repeat the dialogue to put it together.  Also alot of his speech is from TV commercials, films etc that he uses in their emotional context.  For example he used the phrase the Butler said in the Aristocats of "I'm going to send you to Timbuktu", to indicate to me that he was annoyed with something I had done.  He can produce his own speech but he tells me the words just float around in his head and sometimes they slip out of his mind.  So sometimes he uses phrases of TV dialogue to put together his speech.  If you have seen the childrens film "transformers" it is similar to how Bumblebee uses the radio to communicate.
I think all children who are struggling with language can benefit from learning some sign language as well.  But you need to get some advice as to which system might be easiest and how to begin teaching him the signs.  Signing will not stop him talking, he will use it in conjunction with language and when children (especially with autism) are upset/anxious they can sometimes find it impossible to speak but they can sign.

[NicolaMc]

Thanks for your reply. I've heard of echolalia before but nobody (doctors etc) ever said it could be delayed. So when they asked me about it, (I was under the impression that because he didn't repet things back to me at that very moment) I said he did't do that.
Ross would repet alot of things he has heard in dvd's like Madagascar,Cars, Transformers etc, but to be honest I didn't think to much of it. I'll definatly keep an eye on things now though.
Thanks again.

[Sally44]

If you google 'delayed echolalia' you will get alot of information.  Alot of echolalic children who use delayed echolalia can put together their language rather like putting pieces of a jigsaw puzzle together.  In some way they tend to find the repeated phrase and its emotional meaning easier to learn/remember than trying to sort out individual words in their head and putting them together in a correct/understandable grammatical sentence.  It seems to tie in with gestalt perception whereby the 'whole' is learnt rather than the individual pieces that make up the whole. So, for example, if a dog called Jake were to bite the child, the child might use the word 'Jake' to represent a number of things.  So, in the future he might use the word 'Jake' instead of the word 'dog', or 'bite', or 'pain', or 'fear' because he is recalling the incident with the dog called Jake and what that 'whole event meant to him'.  If you were not aware of the incident with the dog called Jake you wouldn't have a clue what your child was talking about.  Does that make sense?

[NicolaMc]

That makes perfect sense!
Thanks, I'll look that up straight away.

[MJIthewriter]

I sometimes repeat things I think in my head by saying them aloud. Sometimes I may catch myself saying the same thing twice. I wonder if that's a form of echolalia that I have still as an adult? Interesting. Interesting, lol.

I notice when I process a thought or read something it usually repeats at least a few times in my head. I have that with dreams too. I'll be analyzing something that occured in the dream and be thinking over it.  It helps me remember the dream if that happens. When I am imagining my story scenes, they tend to repeat at least a few times. Sometimes I deliberatly replay the scene.

It does seem to help "set" it in my memory if I let something repeat than if I don't. The downside though if it is a thought process I want to speak, sometimes I'm compelled to say it as if I am saying it the first time.  Other times I repeat because I stammered and would like to speak it as I have it in my head without the stammering.
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You can ask my dad. I think he told me I went through a period of echolalia.  One hunch I have is if you are a visual thinker and see a phrase on tv that seems to be illustrating the image you have in mind and some dialogue, it would seem natural to repeat that dialogue that went with the image.

This is just a guess. I'd like to see more research done on that aspect.

[NicolaMc]

You said you 'went through a period of echolalia', does that mean it can stop after a time?

[Sally44]

I had an interesting email conversation with Donna Williams through www.****.net as I wanted a different perspective on some things my son was doing.  Anyway, she said that, especially younger autistic children, can almost be on 'recording mode' where they are just absorbing sensory stimuli (and there may be different abilities in understanding/interpretation that stimuli).  Because of delays in understanding/connecting things it can take along time for the child to put together all this information into anything meaningful to them.  Repeating it somehow helps them to remember it and to sort it.
She also said that not all autistic people are visual learners.  I do not think my son is a visual learner.  DW said that there is a difference between being able to remember/visualise and repeat things you have seen.  But still be unable to visualise concepts or retrieve parts of things visually.  She gave the example that if she is asked to remember her friends cat she can do that visually because she has seen her friends cat.  If she is asked to visualise a cat she cannot do that because it is a generic term.  She may visualise whiskers, or ears, but not a whole complete generic cat.  I will give an example of my son.  My son can repeat hours of DVD dialogue.  He can also learn to visually recognise, sort, write his numbers from 0-20.  But if you show him one number in isolation eg. the number 7, he will not recognise it out of its sequence within the numbers up to 20.  Therefore he is not able to visualise a number line in his head to tell him that the number infront of him is a number 7.  DW suggested it might be visual/verbal agnosia where the eye sees the shape of a number seven but there is not the communication from visual to verbal and my son cannot retrieve the word.  If I were to put the numbers 0-20 on a table and mix them randomly and ask my son to point to the number 7 he could do that no problem (so he recognises the number from the verbal to visual channel.  But if I do it the other way round ie. show him the number 7 and ask him what number it is, he cannot do that.
Children who are not visual learners need other systems to help them learn.  For example they should always be taught using real items in real time.  Eg. if we are talking about counting bananas we have to use real bananas and we may even have to write the numbers on the bananas.  Because then he can record that real event and can replay that in his mind.  If it was a conversation about bananas and numbers he wouldn't have been able to record anything to replay in his mind at a later date.
It also means that he needs to be taught the same thing using as many senses as possible.  I do not mean using many senses at the same time as he cannot do that.  But, for example, having used the bananas with the numbers written on them, we might then move onto seeing the bananas with the number on them and writing the number on his back so that he 'feels' the number and this may reinforce the learning through the tactile sense.  Then we might move onto him writing the number on the back of the teaching assistant etc.
I think echolalia in some form can be used into adulthood (as mjthewriter uses a loop of mental visual/auditory information to help him retain information or abstract information).
Echolalia (immediate and delayed) can also remain in adulthood.
I was told that delayed echolalia demonstrates that the person using it has difficulty formulating their own language, but has moved onto the next stage from immediate echolalia and is using the learnt dialogue appropriately in its emotional context. If infact it is being used to communicate, rather than continual repetition to oneself.  It can also be used in turn-taking situations eg. a conversation.  So you may say 'what would you like to eat' and the child replies 'lightening McQueen' (from the movie Cars).  This demonstrate the child understands the turn taking needed for conversation but cannot put together his own response in the time allocated to him and therefore uses an echolalic phrase to take his turn.
As a toddler my son used immediate echolalia occasionally.  He mixed up pronouns continually.  He repeated TV/DVD dialogue for hours a day.  He produced his own speech of combinations of 2/3 words.
At 7 he doesn't use immediate echolalia.  His expressive language is evaluated as 'normal'.  His receptive language is evaluated at age 3.  He still uses delayed echolalia to communicate along with his own speech.  He also repeats dialogue to himself as enjoyment, to calm himself down, to interest himself if he is bored.  So I think it just depends on the person.

[tracy5]

Your son sounds very similar to my son.

All I know is that the autism/speech therapist evaluated him and he is starting therapy this week.  Even after the first evaluation/therapy, his speech communication has improved.  

INTERVENTION IS KEY.  In Pennsylvania where I live the state HAS to give you a medical assistance card for a child diagnosed with autism spectrum (pdd in our case).  That is, no matter how high your income is, the state has to provide your child with services, like a autism speech therapist, an occupational therapist, etc.   I am not waiting . .   every day passing a a lost opportunity to help my son.   They say the echolalia and the non-communication is VERY TREATABLE and very fixable, if you get it early enough and treat it aggressively enough.
Good luck

[LittleMunchkinPetra]

I would like to ask why do you believe your son's symptoms don't fit into autism. Has he got any diagnosis? I would say all you described is often found among autistic people.
Outbursts can happen if he is used to certain routines and  they get broken. He can also react badly to certain sounds, touch etc. I myself have autism and it seems to me that your son might be autistic. I would have to know more about him though. If you need any help NAS (National Autistic Society) offers advice and you can see their website for more info, if you like. I am a member and they are very helpful. In fact, if they did not send me  leaflets and brochures about how to take a break, I would not be able to take breaks at work.I only learned it at the age of about 28. I haven't learnt yet how to communicate with people and I don't have a clue how to socialize, but there is still a lot of time left till  my retirement, so I hope to improve it.I virtually don't speak but I try to communicate through other ways, for example now through computer, which helps me to express myself somehow. I don't know if I am of any help. Last note-if he shouts or roars for no apparent reason- it might mean there is a reason. Sometimes it is just difficult to understand what the reason is. It might be a different way of communication.

Petra

[NicolaMc]

I am from Ireland and they do things very differently here. It sometimes is like no matter what you do, it's like talking to a brick wall!
You have to fight for everything your intitled to. My phone calls and letters are not being answered and at this point I'm nearly at my witts end.
I was actually told that my best option at the moment is sending him to mainstream school in Sept and when the school can't 'deal' with him, they will apply for a SNA (Special needs assistant) and that will get the ball rolling, so to say.
He is on the list for speech therp, occupational therp etc.. but recently I was speeking to another person in my position and she informed me that the HSE (Health service executive) have what is known as a 'ghost list'. Persons on this list are waiting for services but they (HSE) don't have the people to provide these services.
Appalling I'm sure you'll aggree.

[NicolaMc]

I believe Ross does have some form of an ASD but as yet we haven't been able to get him diagnosed properly. As I said above, I live in Ireland and it is very difficult to see the right people/doctors never mind trying to get a diagnosis.
I have read through the criteria for the different ASDs, and while Ross presents with alot of them, he never seems to fit into any one and some of his symptoms are milder than others.
We are now looking into a PDD-NOS diagnosis, but doctors here seem to be reluctant to diagnose it.

[MJIthewriter]

That period of echolalia, was not something I can remember, but my dad mentioned to me. I do know as a kid off and on Dad, or mom, or someone would tell me, "You're repeating yourself." or some sentence or another.

Interesting you contact DW. Could I have her email? Maybe I'd like to send her an email to see what she thinks about my hypothesis.

I think you are onto something with the recording mode. I remember off and on when I observed things, but didn't think in words or mental images, I just observed things.

Around age 2 or 3, I crawled up on something to look out the window. I remember the layout of my room to be the room of the house we lived in Iowa before moving CO springs. I don't know what that was whether it was a dresser or something else. I just remember the shape and the hard surface, possibly wood, but it was dark in my room and it was nighttime outside. I looked outside the window and I remember it being windy. I saw a shape flapping in the wind attached to a pole.
"Scarf" was the word that came to mind. Obviously it was not a scarf. I don't know if it was an American flag or what it was.  It probably was a flag of some sort. Just the shape reminded me of a scarf.

Perhaps that was the "recording mode" that you mentioned.

An embarrassing moment:

In the same room different day, my parents set me into my crib. I had a sudden bout diarrhea or something to that effect.  Anyways it leaked my diaper and I looked down saw it leak my diaper. Meanwhile my dad spoke up to mom who was standing nearby, "You have got to be kidding!"
I associated the word "Kidding" for a while with the poop that ran down my diaper...

Perhaps this may give another clue?  I don't know. I remember at one point I visualized the word "promise" to a multi colored cone shaped lollypop. My guess is dad may have given me one and made me "promise" something.

PS that's an interesting pm that we've been sending back and forth. It's interesting to play "compare and contrast" with thought processes.

[MJIthewriter]

I have a hypothesis about echolalia but I'm afraid I will have to wait to explain it until this evening.

I think it is a form of learning language. I don't believe it is arbitrary.

I think he is trying to use it as a “word” to explain the mental thought he has in his head.

[MJIthewriter]

Perhaps it is like when you learn a new word in a dictionary or say you just remembered a word you haven't used in a long time. I suspect that repeating it is a way to get it recorded into the mind. Perhaps eventually he will learn to break down words in those phrases once he can attatch a visual image to those. I think working with seeting the correct image to the correct word and making sure that is what he is focusing on will help him explain things in more detail and less repetition.

Think of the commercial slogan or whatever he repeats as a "word" he is trying to use to attatch to a context.

[MJIthewriter]

About the cat analogy:

If you say cat to me, my mind visualizes a detailed image of a cat, not specifically any cat I consiously know in my life. I may run down a list of visual color patterns fur types, etc based off what is genetically possible with cats.

Say cat: I may visualize a calico, calico whith white, broken pattern calico, von pattern (ears and tail colored but otherwise white cat), tabby: orange tabby, orange with white, orange with any above markings.  Then there's brown tabby, with any pattern markings.
I can also visualize it being smoke colored like the neighbor's cat. (which is a longhair)

I can minipulate and alter the appearance of the cat in my head.

That's why if I had my way I l;ike people to describe their cat and not just say they have a cat. That way I can visualize the correct breed (or a general domestic shorthair/longhair if they aren't certain) and the markings.
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Adding to this, I've seen lots of cat pictures. Same with dogs. I like to know what breed people's dogs are so I cna visualize the correct shape, and color.

[Sally44]

Re:  Occupational Therapy
My son too was put on the waiting list (now on it for 18 months), and I was told that it could take years before he was seen because of the criteria they used ie. if a child with another diagnosis, such as cerebal palsy, was referred to OT that their diagnosis would automatically mean they were placed above my son.  First remember that all services are either provided by Health (hospitals etc) or through Education (schools etc).  So you need to complain to both providers.
This is what I did:-
I asked the LEA authority (Education) why they did not have an Occupational Therapy service for use in mainstream schools.  They told me that Occupational Therapy is not seen as 'essential to learning'.  (I am yet to answer that one, but I will).
I wrote a letter to the Trust (Health) to find out what was the OT provision for children with autism.
I requested from the OT service (Health) the criteria under which appointment times were decided (I have not been sent this yet, although they have verbally told me that the service was never set up to deal with children with autism and therefore their waiting list is being inundated with referrals from autistic children and that the criteria means they are seen after children with other 'priority diagnosis' such as physical deformities, cerebal palsy, muscular distrophy etc).
I contacted my local MP and asked him to find out what the OT provision was for autistic children within our City.
I asked my GP to find out about any other OT service I could access quicker.
I contacted my local council Disability Discrimination department (as the OT assessment criteria is discrimination).  I am still working on this one.
I obtained a private OTs report to prove he had difficulties and that those difficulties meant he could not access the curriculum and therefore OT intervention is 'essential to learning'.
What results have I had:
Another OT has been employed within the service (so provison has increased).
The LEA have agreed that my son needs a Statement.
I have got a letter from the OT department stating that he is number .... on the list and promising that no other child will be placed above him.  (I do feel the criteria is very unfair as all children who need OT should see one, and using a diagnosis to discern need is discriminatory and illegal).

[Sally44]

Re: echolalia (immediate and delayed).  Some adults can continue to use it.  It does depend on the severity of autism and how it affects their speech/language/ communication.  Echolalia is actually part of the 'normal' process of speech development.  But most children move from echolalia to analytical speech development quite early on (around 2+ years).
Many autistic children can also 'grow out of it' completely, or may use it less and less.  Echolalia is just a different way of learning language.