Verbal Communications Differences and Difficulties Sticky

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LabPet
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16 Sep 2008, 4:55 pm

Saffy - thank you for reading. Not speaking does NOT equate to failure. It is hard, I promise, but many aspects of being autistic are hard. I have some/minimal echolalia too but mostly it's because I'm verbally stalling. Or I am unsure if the other actually is listening.

I would be flattered if you show parents/others my video! Show them speaking is a convention but not the only modicum of communication. Many who are successful &/or intelligent can be non-verbal, to whatever degree. This statistic doesn't matter much too me but I have a measured IQ of 160+ and I am educated and pursuing a PhD. Do tell this to parents. HFAs exist; we are your scientists and artists. And writers, philosophers, mathematicians, professors, etc.


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17 Sep 2008, 3:39 pm

As someone who is high-functioning, I still understand the non-verbal symptom. There are moments when it's all in my head, and I can write it out, but I can't speak. It's like being locked inside. If ONLY we could communicate telepathically.

Many a time I've had my partner talking to me and then have her say, "you haven't said a word!" But I HAVE, just in my own head. It's very difficult, even for her (and she is very understanding and accepting) that there are moments when I can't communicate.

With my own son, sometimes he can't express himself, and I will just sit with him until he can, or I accept that he can't, and it's enough just for me to be near him.

I think this is a great idea.



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18 Sep 2008, 1:29 am

I forget others cannot know what I am thinking.

Very often too.


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18 Sep 2008, 9:23 am

LabPet wrote:
I forget others cannot know what I am thinking.

Very often too.

I am hyper verbal, (I can talk your ear off and recount conversations verbatim and mimic each voice pretty spot on) but sometimes words don't transmit the pictures I have in my head and I take the other person by the hand and drag them to what I want them to see and grunt and whine like a doggie to get them to see what I see. I remember doing this as a child and am still amazed that people don't see the obvious need for action and say, just like back then a a child "talk. . .just tell me what you want, just talk!

or if someone demands I speak, I just can't. But I have been told it is just my stubborness and wilful delight in making the other person feel bad so often, I have mixed feelings about why.

Merle


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ViatorRose
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20 Sep 2008, 3:04 pm

Saffy: This post is a reply to an earlier post of yours that posed questions to those of us who are mute. I am sorry for the delay in giving an answer; I wanted to make sure I had understood the questions properly before committing to a reply.

Was being non verbal a choice for you?
I would offer the interpretation that being mute is a response to the mute's situation more than a freely chosen option. Like many of the contributors to the Special Silent Forum I do not talk at all, and communicate by either writing words down for others to read, or by sharing drawings and diagrams.

My parents believe that people 'think' with a constant narrator speaking words in their mind. I find this incredulous, but believe it could be true because when people are talking to one another, it seems so spontaneous that they could have a voice rehearsing the words first. However, I do not seem to experience this to the same degree, as a narrator only appears when I write words down. This is how I check what I will say. When I write, I am talking. That so many people refuse to read the words I have written, or, read the words aloud so at least they hear them, is slightly offensive. Very few people mimic the sentences of other speakers in the way they do mine, when the words are read out for all to hear.

To answer this question: No, it is not a choice, it is a response to the situation based on the way my brain operates most easily. I make pictures and patterns, not words. When someone directly asks something of me I simply do not have a response in words.

Did you always know you either would not or could not speak ?
No. So much was made of the 'Not Talking' aspect of my personality that autism as a contributing factor was completely overlooked. I simply believed I would be able to talk because others informed me that I should (and said I was insolent or naughty for not talking, which implies a choice that did not exist). I have never had a boyfriend, despite being reasonably clean, moderately intelligent, and nicely presentable. I had one friend until the age of sixteen, because our mothers knew each other and made us interact, but she emigrated after GCSEs and I have not had a good friend since (seven years). I have always tried so hard to meet people but just do not understand how to 'get to know' someone. I have always required help in this very basic way, but this got completely ignored in favour of getting me to talk. I have become extremely isolated, unnecessarily. When the question was begged Why Didn't I Learn Sign Language? the reply has always been something akin to Because We Did Not Want You To Get 'Lazy' With It. If You Had Alternate Means Of Communication Maybe You Would Not Have Learned To Talk.

But I never did learn how to talk to any useful extent.
I can memorise a few sentences to say in certain situations, but when I can no longer recognise the format of the conversation it does not occur to me to further the verbal communications. Spontaneous speech simply does not happen for me. If you take away any alternative method of communication, that simply leaves me with no communication tools at all. This is something I would put to you Saffy; I think your profession does wonderful things for children responsive to it, and I almost certainly would benefit from speech therapy since my voice does not vary in tone and is just generally difficult to understand. But PLEASE do not allow the parents to focus on speech alone. Taking away all other forms of communication, whether it is drawing, writing, sign language or mime does not increase someone's ability to talk if their brain is not geared towards speech. Let them be happy, confident, and intelligent children whether they talk or not. Speech is not the only form of communication, despite what the vast majority of people would have you believe. I just think it is a waste that only now do I accept I am a mute, aged 23. I could have spent the past 20 years in the education system talking with British Sign Language, but every teacher and doctor that I encountered refused it. I am now teaching myself out of several workbooks; when my confidence improves I hope to join a Deaf class to consolidate my knowledge into a useable everyday language. Which leads me to why I can not answer your third question about positive and negative experiences. Without exaggeration I can state that until the age of 22 I did not receive any compassion or assistance for autism, and it troubles me deeply; I have not overcome it in any objective way that would enable me to share my experiences at this time.

Thankyou for posing your questions, though my answers were rooted in my own experience perhaps they might be useful in some small way. I hope you will continue to contribute with your wealth of experience with dealing with non-verbal children, and that any learning might work both ways.



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20 Sep 2008, 3:10 pm

DevonB wrote:
With my own son, sometimes he can't express himself, and I will just sit with him until he can, or I accept that he can't, and it's enough just for me to be near him.

I think this is a great idea.


I think this is a marvellous idea. Not only does it ease the immediate communication breakdown, but it reinforces the belief that talking is not crucial to getting your thoughts and opinions validated.

Silence = Okay



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20 Sep 2008, 3:16 pm

Saffy wrote:
Sora wrote:
And one 2nd question that is the result of a situation that has happened just now in the kitchen. Does anybody repeat short 1 or 2 word parts of questions to answer questions. "Do you want toast?" "Want Toast."

Or repeating whole questions as answers to mean yes? I never mean no when I repeat something. But repeating = mindless activity, don't need to think how to say it myself that I agree. Saying yes is somehow more complicated for me than repeating what I have heard.


What you just described here is called echolalia and it can serve a number of purposes. there is a really good article on it here http://groups.msn.com/theautismhomepage ... facts.msnw if you want to know more about it and the reasons behind it's use for some people. There was a parent just asking the same question in the parenting forum about echolalia.


On the subject of echolalia I just wanted to stress the point that being mute is not necessarily about not talking, but more so of finding speech an inefficient way of communicating data.

I can physically make noises, but to what end? I do not understand much of what is conducted verbally. Sora made the point that she can repeat shortened (more efficient!) speech as in Q. Do You Want Toast? A. Want Toast.

I would like to take this further and suggest that just because a piece of speech makes sense to the listener it does not imply that the speaker understands too. My parents tell me I used to copy (speak aloud) the slogans from certain television advertisements when I was very young. I have no knowledge of this now, and my not have done then. That an advert about Heinz Beans came on and I said "Heinz Meanz Beanz" (their slogan in the late nineteen eighties) does not imply that I made a connection between what was being sold and the words used, it could have been mimicry of the sounds alone.

Talking is more than saying words; surely it is understanding what words mean and being able to translate this knowledge into different situations when data needs to be communicated.

I strongly believe that being mute is not the same as other disabilities such as being blind or deaf: blindness can affect the eyes or the part of the brain associate with vision, just like muteness can affect the vocal chords or the part of the brain that processes speech; but too many times I have been told that I am "not really mute" because I can repeat some words. Talking happens in the brain, not the voicebox. A working voicebox does not mean that the brain understands or can utilise the information in a way meaningful to anyone else.



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20 Sep 2008, 3:26 pm

LabPet wrote:
http://thalamus.wustl.edu/course/sleep.html

Check out the link above - very interesting! I have no Sylvian Fissure and this is a factor as well.


Labpet: I found this article fascinating, I intend to take it to show the doctor the next time I find myself forced to attend an appointment.

How did you discover you had no Sylvian Fissure? I assume it was due to a brain scan, but how did this process take place?

Has anyone in the UK had this procedure done on the NHS? It would mean a lot to me to find out whether or not a Sylvian Fissure is absent from my brain.



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20 Sep 2008, 5:36 pm

ViatorRose wrote:
LabPet wrote:
http://thalamus.wustl.edu/course/sleep.html

Check out the link above - very interesting! I have no Sylvian Fissure and this is a factor as well.


Labpet: I found this article fascinating, I intend to take it to show the doctor the next time I find myself forced to attend an appointment.

How did you discover you had no Sylvian Fissure? I assume it was due to a brain scan, but how did this process take place?

Has anyone in the UK had this procedure done on the NHS? It would mean a lot to me to find out whether or not a Sylvian Fissure is absent from my brain.


1stly, you perfectly stated the case about being NV. What you expressed could not have been a better answer! I do wish certain NTs could know what you said. Profoundly know.

Yes, the article is riveting and I know more, but mostly at the receptor level/chem. I do hope your doctor can find this of use.
About not having a Sylvian Fissure: By serendipity I had this otherwise overlooked, but nevertheless major, anatomical feature, checked for - do ask your doctor if this is pertinent. The Sylvian Fissure occurs (or not) in utero. Some with autism may have a partial Fissure, but not fully. In actuality, neuroscientists truly don't know the significance or if this lacking even matters. The reason I knew, and to check, is because I have a high genetic propensity for autism in my family ancestry and my paternal grandfather had drawings/schematics of the Sylvian Fissure - with a passion. He somehow knew this was correlated, which was remarkably ahead of his time!

Interestly, A. Einstein had no Sylvian Fissure. As you know, Einstein's brain has been intensively analyzed after his death. The fact that he did not have a Sylvian Fissure is just a relic, more or less. He is forensically diagnosed as HFA and this now accepted.

Sort of makes one wonder...how many of us are existing with no Sylvian Fissure but would never know? It's not checked for unless specified. Further, why does that Fissure matter? Or does it matter?

There are many factors and this is but one. Well done ViatorRose. Saffy - does this help? I think those with autism can reflect upon our own unique mindset perhaps better than any other source. I am in the neurosciences and my analytical mind is sharp, plus I have an 'espionage vantage' in that I am one!


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20 Sep 2008, 5:44 pm

Image


Sylvian Fissure, or where it's supposed to be! A fissure is a 'space between' or cavity that is fluid-filled for chemical neuroreceptors to bathe and communicate. Plus, if the brain is visualized (talking just physics here!) as a sphere in space those fissures, or hollow chambers, act to physically balance the sphere in space. If a disc spins in space (imagine ~ 2000 rpms!) then to spin 'in center' the space needs to be balanced else it will spin off balance. The only reason a CD-ROM's hole is in the middle is because it's a perfect circle. A brain isn't not a perfect sphere, of course! Those hollow chambers exist for a reason. Humans are bipedal which means our brains are offset by standing; animals (vertebrates, mammals) in general walk on all fours....and they don't speak either. This may seem contrived, but there is evoluationary neuroscience, and neurophysics, and indicate such.


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Saffy
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20 Sep 2008, 7:43 pm

I want to reply to several of these excellent posts at length!
However I have my son ( yep with ASD, among other things ) requiring my attention at the moment.. we bought a weed eater home today to trim some long grass at the back of our house. Well... one of my son's special interests is Power tools, weedeaters, lawn mowers and chainsaws being at the top of his list as "cool stuff " He's been sitting in the garage for roughly 2 hours now enjoying looking at the weed eater, but obviously it is not safe to leave him there alone ( although I doubt he has the strength to start it ).
So, when I have a moment I will reply. This is really just to acknowledge that I have seen the posts and will respond :)



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21 Sep 2008, 9:06 pm

ViatorRose wrote:

Mine also; I am £25 000 in student loan debt, no degree to show for it, and not eligible for any further funding to resit or take a different course. On a very low income I will not be able to afford to go back to university. The reason I did not complete my course was due to a chronic lack of communication both from me and towards me by tutors and classmates, and an inability to participate in a group project in a way that was deemed acceptable. This is not to say I did not do the work, I did, only I wrote it down, and everyone involved had evidence of this. Yet the thought of being able to go back to university is motivation enough to keep applying for jobs to earn money for education.


what subject were you doing, and what would you do if you went back? i hope you dont mind me asking. did you have any help or support, and would you find it helpful if you went back?

i did maths first time around - it was the only subject i could do without support, since it required the least communication, and had no group work or verbal assessment. i stuck it out and passed but it wasn't really what i wanted.

just recently i've tried going back to university doing law, just part time (cheaper!). obviously it's much more of a verbal and social subject with discussions and group work. through the disabled students allowance i've got funding to have a 'note-taker' with me all the time - but really she's a specialist autism support worker, and i mostly have her there to help me cope with the social side of things, partly as moral support and partly to help with communication and all that. i wouldn't be able to do it without her.



Saffy
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22 Sep 2008, 6:24 am

Well here I am, some considerable time later, able to have a few minutes to respond at length and hopefully intelligently.

Quote:
When I write, I am talking. That so many people refuse to read the words I have written, or, read the words aloud so at least they hear them, is slightly offensive.


Firstly I find it amazing that people would refuse to read what you have written! That to me equates to someone putting their hands over their ears when I am speaking. Very rude!

I think you will find that those people that read the words aloud, are people that are more auditory based. They actually have trouble processing the words unless they hear them, my mother is a typical example of this. I have noticed that no matter what it is, if I hand her anything written, she will read it aloud. I think she genuinely has difficulty processing the words just through reading them. Although I can see your interpretation too, I suspect it is not that people wish to be rude under these circumstances, it is just that they have trouble understanding unless they receive the information via auditory means. Those kinds of people are most likely the ones that have to read and re-read information before it sinks in, or resort to reading it aloud to themselves.
Much like a visual learner learns better if they have things written or in diagrams and pictures. The majority of people I would venture to say are a mixture, depending on the information they are receiving. E.g I would rather hear directions to a place in a city given to me verbally with street names and descriptions of landmarks, where as my husband would rather have a map to look at. This does not mean that I am poor at interpreting diagrams, perhaps just not as strong as my partner. However, I am a much faster reader when it comes to books than he is. We just process different types of information more easily in different ways.

Quote:
I have always tried so hard to meet people but just do not understand how to 'get to know' someone. I have always required help in this very basic way, but this got completely ignored in favour of getting me to talk.


I find this VERY sad... I suspect that Speech Pathologists here work very differently here than in the US. I have often thought our title is a huge misnomer, I would prefer that we were called Communication Therapists, or Dysphagia Therapists, depending on our speciality. SLP/SLT does not really give a good indicator of the breadth of our work. I have done a lot of the type of work you have needed with adults with brain injury .. basically how do I use the skills I have to get what I need ( be it social interaction, friendship or a hot dinner )

I spend a large part of my time with my little people with ASD ( since I work mostly with under 6's ) on really basic pre-language skills, but also on just enjoying all forms of communication and interaction. I think really the main motivators for communication for a child are

1. It is enjoyable
2. It gets you stuff !
3. It lets others know how you feel!

As an adult the reasons are the same really, they can just be broken down into more complex issues.

The social aspect of communication is VITAL, if you do not have an understanding of how to use the skills you have to communicate ( what ever form they take ) they are useless to you. The pragmatics of communication are so important.
I have also worked extensively in the area of brain injury ( Traumatic Brain Injury ) where many of the issues are the same, except obviously the clients once had the skills, but have lost them. What we would do is start out with functional communication - ie what have you got and what can you do with it, and what can we do to help you communicate until you either gain more language or learn to use the language you have.

I think children have to see a reason to communicate and have a desire to, before they can communicate in any way at all. I see so many people trying to PUSH children into saying this and saying that, when the child has NO idea what they are doing or why.
Far better to play with a drum and take turns banging it .. smiling and laughing .. changing the pattern of the drum sounds, copying, imitating .. having a blast .. and talking about the experience, so that language can be linked to something that means something, and is fun ! In my experience ASD kids need initially to have the motivation to use the language and for it to have real meaning for them, as with any child. Finding the motivators can just be a little harder. I would rather have them heading off to school with 10 words that meant something to them, than a vocabulary of 200 words that held no meaning. Finding things that are important to that child or adult and working on those are far more powerful than any agenda someone else could develop for them.
For that reason... for my little clients, I normally teach fun words( bubbles ! trains! playdough etc.. what ever the child loves to do ).. and words that hold power for them, e.g More, No, help, yes please,, mine, stop ! Those are all power words for a child.. they make things happen, or cease.
This is all done through play .. and in context, so it all holds meaning .

Quote:
Why Didn't I Learn Sign Language? the reply has always been something akin to Because We Did Not Want You To Get 'Lazy' With It. If You Had Alternate Means Of Communication Maybe You Would Not Have Learned To Talk.


I am also appalled by this .. if I have a child who seems like a good candidate for signing they are taught to sign. I often get the argument above from parents, who are worried that it will become a " prop" and the child will not develop language and sign instead. In fact, signing has been shown to encourage development of language and signs are normally dropped as soon as the word is acquired. It facilitates language, and does not hinder it.
Better to have a child signing, or using a picture exchange system or what ever will work for them in the area of augmentative and assistive communication, than screaming in frustration and having their development slowed with no means to communicate at all. Again I come back to what is going to work for the child, not what is someone else's agenda.

So I would like to emphasise that for those of my profession certainly in NZ, we do not just work with speech and language in it's basic form ( speech sounds, voice, fluency, language development and grammar).. we work with all forms of communication, including alternative means of communication, body language, social skills, pragmatics, executive functioning ( planning ), social play, pre-language, feeding, swallowing, breathing, reading, and skills for living that centre around communication ( how to talk on the phone, how to make a shopping list, how to flirt, how to order from a menu, what to say to ask for directions, fill in a form, write a sympathy card, folowing directions around town, reading maps etc.. ANY form of communication.
Obviously it is going to vary depending on which area of the population we have chosen to work with. ASD is my thing, along with resistant and problem eaters.

I think I am rambling .. but I am going to continue - I hope you can make some sense from this !

I think it's wonderful that you are learning to sign, and I know that will stand you in good stead. What are you using currently as a communication aid ?

Quote:
Talking is more than saying words; surely it is understanding what words mean and being able to translate this knowledge into different situations when data needs to be communicated.


This is very true, this is what we call pragmatics. Is it knowing when to use what you have, and use it appropriately, and it applies not only to verbal language but also to non-verbal communication.

here is a very short and basic definition

Pragmatics is the theory of linguistic communication. Therefore we should indicate what is involved in linguistic communication: a) what can be communicated, b) how the speaker goes about accomplishing the intended communication and c) why certain strategies are selected under particular circumstances to bring about the communication.

For those of you that enjoy reading .. you may enjoy reading about this topic, it is essntially the difficulty that most people with ASD have when they say " they do not know what to say exactly .. and if what they said came out right .. or if they used the language they had in the right context. Body language and situation all have an influence as well on the message interpreted by the other person.
I have a nice example here I just pulled from a web page about context

"If one examines the fox population in northern Canada, one finds a four-year cycle of peaks and valleys, a situation that is unexplainable by just examining the fox population. When one expands one's purview to include the local rabbit population, one finds an inverse relationship of population between the two species, which suddenly becomes explainable since the fox population lives off of the rabbit population. Next the authors tell of a man who collapses and is rushed to a hospital. They find basically nothing wrong with the man and no reason for the collapse. Then someone informs them that the man had just returned from mining copper for two years in the Andes at 15,000 feet. In the final anecdote a bearded man is observed crawling around an open meadow in circles on his hands and knees and quacking like a duck � a totally crazy behavior in anybody's book. Well, anybody but Konrad Lorentz's book, King Solomon's Ring (page 43), where he described how he went about imprinting ducklings to take him for their mother. [paraphrased from pages 19 and 20]

Inside one frame, a behaviour is meaningless or seemingly crazy, inside another frame, the behaviour makes imminently good sense. No amount of studying the physiology of the foxes who were dying out every four years would have helped explained the cause. No amount of studying the Andes miner's physiology would have explained the cause of his collapse. No amount of studying Lorentz's mind would have explained his curious behaviour in the meadow (except asking him what he was doing and why). "

Paul Watzlawick, Janet Beavin Bavelas, and Donald D. Jackson
Published by W. W. Norton and Co/NY in 1967


Quote:
A working voicebox does not mean that the brain understands or can utilise the information in a way meaningful to anyone else.


So true, I see this all the time in my work .. with a variety of conditions - psychosomatic dysphonia, aphasia's, dyspraxias, they all have a shaky connection there in various ways. Where the brain and the speech production and or interpretation just do not match up.

Now I really have rambled.. please excuse this post and if you find it completely incoherent - feel free to tell me so :)

I'm interested... have any of you ever had a childhood apraxia of speech diagnosis ? ( mis-diagnosis? )



Last edited by Saffy on 22 Sep 2008, 6:41 am, edited 3 times in total.

Saffy
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22 Sep 2008, 6:36 am

sorry another post from me..

It really does seem that US SLP's have a very different way of working with children/adults with ASD than we do here.. judging from many of the stories on these forums. Or do you think that many of the posts are looking from a historical point of view and that things have changed. Do any of you currently have involvement as adults with a Speech Language Pathologist ?

ack .. I have to say I am completely embarrassed by the number of questions I am asking.. but this does seem to be the perfect place to ask them, with intelligent people that have a unique perspective. But please if you would rather I took my questions elsewhere, let me know.



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22 Sep 2008, 2:17 pm

DivaD wrote:
ViatorRose wrote:

Mine also; I am £25 000 in student loan debt, no degree to show for it, and not eligible for any further funding to resit or take a different course. On a very low income I will not be able to afford to go back to university. The reason I did not complete my course was due to a chronic lack of communication both from me and towards me by tutors and classmates, and an inability to participate in a group project in a way that was deemed acceptable. This is not to say I did not do the work, I did, only I wrote it down, and everyone involved had evidence of this. Yet the thought of being able to go back to university is motivation enough to keep applying for jobs to earn money for education.


what subject were you doing, and what would you do if you went back? i hope you dont mind me asking. did you have any help or support, and would you find it helpful if you went back?

i did maths first time around - it was the only subject i could do without support, since it required the least communication, and had no group work or verbal assessment. i stuck it out and passed but it wasn't really what i wanted.

just recently i've tried going back to university doing law, just part time (cheaper!). obviously it's much more of a verbal and social subject with discussions and group work. through the disabled students allowance i've got funding to have a 'note-taker' with me all the time - but really she's a specialist autism support worker, and i mostly have her there to help me cope with the social side of things, partly as moral support and partly to help with communication and all that. i wouldn't be able to do it without her.


Congratulations on your return to university, I hope it is a successful endeavour. I have always been preoccupied by textures and fabric so studied design and textiles. Also I live in Bradford (Yorkshire) and nearly everyone in my family worked in the textiles trade so it seemed like a sensible choice.

I undertook a BTEC and A Level in design and textiles at the local college, without any support, but really struggled when I went to London to obtain a degree. I stayed the duration of the course but did not qualify for the degree due to ‘missing’ crucial marks. Not due to missing work really, as I did everything, but I struggled to communicate it all in a group project and lost valuable marks. Since I have completed a degree’s worth of work already I would choose another design related subject, and put forward the work I have done but not had evaluated.

What would I do if I went back? Accept all help offered. It is obvious I am mute, but no one mentions autism unless I confirm it by writing it down. I do not need any ‘reasonable adjustments’ made as such, but would really benefit from people not trying to help me to speak. Just read my written words!

I think you had the right idea about choosing a subject which is an individual effort and requires very little interaction. Conversely I had a bad experience of mathematics at school, as quite a lot of group projects were instigated, problem solving as a team. I always seemed to make the distinction between classroom based (academic) subjects that involved sitting in close relation to thirty or so other people, compared to studio based subjects (arts) as the lighting was better, the tables bigger and the atmosphere generally more relaxed. I believe that is why I chose more art lessons at GCSE (despite having little drawing talent): because it was a better learning environment.



Smelena
Cure Neurotypicals Now!
Cure Neurotypicals Now!

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Joined: 1 Apr 2007
Age: 50
Gender: Female
Posts: 1,950
Location: Australia

24 Sep 2008, 11:50 pm

Labpet,

What is a DANA?

Helen

P.S. Great thread! I've only skimmed through because the kids are on school holidays and running around. I'll read in more detail later!