Naked Science Forum
Life Sciences => Physiology & Medicine => Topic started by: SPDSupport on 13/01/2006 10:55:37
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I own a support group that is for children and adults who have a language/communication disorder. Just out of interest and its good for understanding what is needed to be done with regards to informing and changing the public's perception on particular issues...
I'd be really interested to hear..."What do you think constitutes an Autistic Spectrum Disorder?"
Be honest please.. and dont look autism up before you answer it.[:)] Even if your opinion is wrong it doesnt matter..its about what you think constitutes it..if you have no idea, please say so... it helps people like myself to know what information the public already have and need.
Many thanks
Babs@SPD Support.
(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fwww.spdsupport.org.uk%2Fimg%2Fspdlogo.gif&hash=2c5fa2616485c28c9f43554c1e20b202)
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never heard of it and im not really sure what autism is exactly but from the phrase i would guess that autism comes in several types and autistic spectrum disorder refers to those who have two or more types of autism but im just guessing.
"Defender of the Sea"
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As I understand it (my mum works with pre-school special needs kids, many of them with ASDs so my knowledge of ASDs is a bit patchy and applies mainly to three year olds):
ASDs are a group of conditions including Aspergers' syndrome and autism which are considered together because they have some of the same characteristics.
In general they are characterised by difficulties in working out what other people are thinking and feeling, making social interactions difficult. Autistic children tend to have language delay, often very severe, but I'm not clear (I don't know if it's known) whether this is because their ability to use and process language is deficient in itself or whether the fact that they don't do social stuff means they don't get the language learning cues from which "normal" babies learn to speak.
I've heard the difference between autism and Aspergers characterisd as follows:
Autistic people don't do the social stuff and aren't interested. They don't want the normal world to impinge on them too much and find it hard to cope with.
People with aspergers want to fit in but tend to keep missing the clues that would tell them how to manage it.
ASDs aren't really related one way or another to (what I'll call for ease of reference) IQ, so some people with (milder forms of) ASDs can use their ability to learn stuff to learn to cope with the world and to socialise almost by rote, whereas others can't. Sometimes children with other developemental disorders have an ASD along with their other difficulties.
A few high functioning (high IQ) ASD people have become prominent in fields such as maths because they can be very focused and will not be distracted by social stuff, but their number is very small and the idea that autism is typically countered by extraordainary abilities in other fields is a myth which makes life harder for families with autistic kids most of whom don't have anything of the sort.
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Thanks Rosy and SharkeyandGeorge for your replies.[:)]
May I just add that I dont want anyone who answers this question to read the others posts and then form an opinion based on what they have said either... I would like to know what you would have said if someone approached you in the street and you didn't have access to any information ...if you wish you can then add what you think it means, having read some of the answers on the thread but its your initial thoughts I'm interested in. [:)]
For me, its interesting to see how much information is known about a disorder that is now affecting 1 in 110 people in the UK and to find out exactly what lack of information is promoting fear in parents, carers and loved ones when they receive a diagnosis of an ASD for a loved one. So keep it coming peeps[:D]
Thank You.
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OOOH !!...as soon as you say don't read the posts and don't look it up...well, that's exactly what I want to do but in respect of what you have asked I have restrained from doing so.
In my humble opinion I think Autism is the inability to interact with what is deemed the " normal " world. In other words Auristic people seem to live life in a whole different way of perceiving their existence. compared to non autistic people. This manifests itself in obvious ways during interaction. I presume there are all different levels of autism and in a lot of cases they are seen to perform extraordinary feats of mental ability and creative skill. The way they are able to do this is completely alien to the likes of non autistc people. There is clearly something either misfiring or has been wired in a different way inside their brains and this is also demonstrated when it comes to social interaction. There are very very rare cases where people have the abilities of autism and are still able to interact coferently with the "outside " world. These individual are extremely helpful in offering insights into the condition.
Well, I've kind of skimmed around the outside but that's about my limit...can I read the other posts now ?....Oh..the term Autistic Spectrum disorder I gather refers to the wide variety of autism out there where in some cases it's hardly noticeable and in others it's plainly obvious and acute...eg: Rainman.
Men are the same as women.... just inside out !!
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Autism: Kind in a helmet trying to bang his head on everything and screaming a lot. Did I get it right?
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Hmm...
I know a few people who are Autistic. And they are as different as night and day, from each other as well as from "the norm".
The 1 I knew first seems to have no control over his wanting something and acting to get that something, from screeching out a song to striking his mom repeatedly in the airport in front of my eyes because she didn't buy him McDonald's (she had no $, and she was driving me to the airport for a funeral, she did not have a sitter, he was 8).
The 1 met later was seemingly unable to control what came out of his mouth, hurtful words followed be bemused attitute for why the target was upset and crying, he was 13.
So Autism to me is various levels of lack of ability to control what the individual does/says. Absence of tact, I would say.
Only my experience
Sorry if this is no help, I really prefer to help or stay silent
Joanne
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As I've been studying ASD for quite some time, it wouldn't be fair for me to answer this.
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Really? Can I ask in what capacity? Just interested.[8D]
Do you not think that just from the few answers received already the stereotypical Rainman is appearing?..No offence to anyones answers..your responses are exactly what i wanted to hear..honest opinions...based on a lack of public information[:)]
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No offence taken at all...it's not as if Autism is part of every day schooling is it ?
Men are the same as women.... just inside out !!
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Babs - I'm building a website about autism; trying to explain the psychological, genetic, physiological & environmental theories in plain language. I'm ok with the psychological & environmental, and I've finally got to grips with genetics - but the physiological side is now giving me a headache.
It all began about a year ago when I was talking to a friend of mine who has a 10yo autistic daughter. She was saying that her daughter had been diagnosed as having chromo22 ring mosaicism & asked me if I knew what that meant as it hadn't been properly explained to her. I sent a question in to the Naked Scientist radio show and Chris explained about mosaicism. In order to better explain it to my friend I started researching genetics and chromosomal defects. I soon found out exactly what my friend meant about not being able to understand it. Most of the sites I found were using highly technical terms & I found them almost incomprehensible. It's understandable as their target audience is fellow specialists, but next to useless for the average person.
That's where I got the idea for my site (yes, I call it Rainman - R.A.I.N. for Resource And Information Network. It seemed an appropriate name). I spent quite a while compiling a dictionary of words & terms until I was finally in a position to understand what I was reading to a sufficient enough extent to be able to translate it into plain English that anyone could understand.
But my interest was piqued. The more I read about ASD, the more interested I became. I'd done a module on autism in my undergrad days but I was more interested in addiction/dependence back then. I decided to extend my research to cover all aspects of ASD (plus a bit about the other PDDs so I could make comparisons).
I'm including stories from people with ASD or from people who care for ASD sufferers to add a more human element that I hope will help others to better understand what ASD is.
I also want to add a list of support groups, reference material, links to other sites, product suppliers etc & a Q&A section.
It's turned into a mammoth task but I'm getting there.
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I have just written this for a reply to the thread... and havent read your last post yet..ill get onto that in a sec...[:)]
No I know, but if you were asked about Dyslexia for example I bet people would have more knowledge on that and I bet the term is used and understood more in schools. Autism hasnt had the same platform as Dyslexia and has only recently been brought to the fore due to the MMR scare...the platform it had previously was the stereotypical Rainman figure, which is incorrect.
Autistic Spectrum Disorder is a term used to describe the subgroups that come under the umbrella of Autism, there's still a lot of work going on to define the exact criteria for each disorder but everyone affected by an Autistic Spectrum Disorder has difficulties with what is known as the Triad of Impairments. The Triad of Impairments is a term that was coined by Lorna Wing, a world respected UK Psychiatrist.
Typically the triad consists of difficulty with understanding and using non-verbal and verbal communication, difficulty with understanding social behaviour and difficulties with imagination and theory of mind, which all affect a persons ability to interact with others and understand their mental states, behave flexibly and use and understand language and behaviour in a social setting.
Autism can mean the world is very difficult to understand for those affected by it.... In the severest of forms a person with Autism will usually have accompanied mental retardation too, and many children can have severe learning difficulties. On the other hand there are those who have average or above average intelligence with good spoken language and few learning problems, (look at Bill Gates aka Mr Microsoft allegedly diagnosed with Aspergers Syndrome- a sub group of autism) but the triad of impairments still remains and being mildly affected in each of the triad domains means they can still encounter significant social and communication difficulties together with some rigidity or obsessional behaviours. Maths genius's and savant abilites(rainman) can often stem from the obsessional interests some people with autism have.I mean if you are obsessed by numbers from the age of two and it dominates your whole way of thinking and being its quite likely that you will turn out to be highly intelligent in that specific area..but at the same time lacking in the other areas neglected by this obsessions dominance over you.
Difficulties within the spectrum... Some people with Autism can find all of their senses heightened, so much so that the sound of a fridge buzzing in the background can be excrutiatingly painful.. bright lights might hurt their eyes so they need to wear sunglasses, food might taste so unpleasant it can make a person violently ill, certain fabric might not be able to be tolerated against the body, eg wearing a pair of nylon socks might be like walking round with sandpaper on your feet all day. On the other hand a person can be highly insensitive to pain, and cannot feel when they hot or cold or are hurting from appendicitis!.
Stereotypies such as headbanging, rocking, flapping, spinning etc which are common, are said to be coping mechanisms which can help to calm a person down in times of stress.They can also signal anxiety though..so you have to view the behaviours in context.For example..Think what you do when stressed? Tap your fingers, shake your legs? We all have our own little idiosyncrasies. Autisms sensory processing difficulties might mean that more stimulation is needed to achieve the same result that your or I can get in lesser forms, that is why in times of stress you might see a person with autism rocking and swaying to help them achieve an equilibrium again, whereas you or I would maybe bite our nails!.
Language is often delayed in those who have autistic spectrum disorder. Some children do not develop speech at all..however Asperger children( a sub group) do not have significant delays, but their pragmatic language (social use of language) development is impaired..This can mean that a person finds it hard to understand what is going on in the world, what is going to happen next. They cannot make predictions and infer meaning from verbal and non verbal communications easily like your or I can.. for example..they might not pick up on a shoulder shrug that means you are saying "I dont know". They might not make inferences about what you want from them..." Can you shut the door?" might ellicit the response.."Yes!" but with no action. Language is often interpreted very literally too, so phrases such as, "Cut it out!" or "Give us a leg up" might be confusing. The meaning of words can also cause confusion, as can whole sentences where long winded and complicated syntax can cause problems..eg "Not only the girl but also the cat is sitting" Because language is the medium we use to learn and understand everything..having difficulties with that medium places you immediately at a huge disadvantage. How can you understand a concept or an idea if you cannot understand the words used to express it? Speak to me in Japanese..How would I know what you are talking to me about until I had mastered the language well enough to be able to draw some conclusions from it? What if I had mastered the language but had difficulty processing the information and seeing the whole picture, what if I had mastered it but had difficulty making inferences and deductions from those words..I would be still at a disadvantage wouldnt i? This is what it is like for the subgroup(still underdebate) Semantic Pragmatic Disorder..who have huge difficulties with the meaning and use of words and sentences.
Imaginately, a person with autism has difficulty thinking and behaving flexibly, which means they may try to impose order on their surroundings to keep some degree of sameness in this chaotic world.This can mean they might insist on eating the same foods, going the same route to places, use set phrases and patterns of behaviour, do not want to engage others in play or conversation, resist transitioning from one thing to another to avoid new situations which can create even more misunderstanding and chaos etc...its a cycle..if you live in chaos..would you not want to insist on keeping things familiar and within your boundaries?
So to understand how it is for those mildly affected...Imagine all of the types of difficulties you might have if you were a foreigner suddenly abandoned in a foreign land, not understanding the language, the customs, what food you can eat, what laws you must follow, how you should behave towards certain people, who you should not talk to, who you can trust, where would you go for help, what should you do, what do you say..what is that object for..how do i use it, what can i say to find out, who should i ask etc etc..it would be hard for you to get by until you had learned to "cope" with your situation.This is why young children with autism tend to tantrum and scream a lot..as they get older and develop their ability to understand more, they develop better coping strategies. People with milder forms of autism can cope very well and hold it all together, sometimes they can break down and resort to the stereotypical descriptions of autism that you hear about, this is why it can be so difficult to diagnose at times too. Ever had a friend who is very quirky? A little eccentric, tends to have social difficulties and can converse and behave unusually at times?... Would you consider that person to be Rainman?? Or your friend who is quirky, and a bit odd at times.. He may be undiagnosed with an autistic spectrum disorder. :-) The stereotypical Autistic is not really what autism is about. I hope this has enlightened those who read this and will make them see the person behind the label and the way in which they try really hard to cope with their difficulties. Can you imagine being a child in secondary/young adult in Uni/adult at work who has the diagnosis.. who is coping with all of that and having an average to above average IQ and feeling pretty miserable that people just dont understand you .......and you just dont understand them or the way the world works at times.
Sorry for the essay..lol.. I can talk all day on this subject.. But wont bore you anymore.
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Thats you and me both them..LOL..I've been running mine now for 3-4 years and am myself in the process of revamping mine with some funding that has been very kindly donated. It is a mammoth task, you're right and I am glad that I am sticking to just one of the subgroups(debatable) which my child is affected by rather than encompassing them all!! Do you know what you are taking on!!lolol [8D].....You will need tons of funding because as you grow your site will get more and more popular and you'll need more and more info for your visitors..
Having researched SPD for 6 years now and having ran the site for a few years too, and having experienced the difficulties first hand as a parent, and listening to all of the worries of those who use the support group you do get to be able to understand and explain things in layman's terms.
If you need any info about SPD writing for your site or if i can be of any further help let me know. Is your site up and running now?
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Thanks, Babs. I may well take you up on that sometime. [:)]
My task is not as enormous as it could be because I'm trying to avoid overly-specialised info. For instance, in the genetics section I'm not going into the function of RNA, proteins, amino acids etc. I've stuck to basic DNA & cell replication, the types of defects that can occur, and how those defects have been associated with autism. I'm not giving details of any research on the subject.
I have also resisted the temptation to pass comment on the various psychological, environmental & physiological theories, or to try to explain them too thoroughly, I've just stuck to basic outlines.
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I've put the homepage on my geocities site so you can have a look. Hopefully I nulled all the links!
I'd be interested to know what you think of the online dictionary function.
http://www.geocities.com/dr_castor_fiber/
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Ive added the site to my faves and will have a nosey tomorrow now its a bit late and Ive had a wine!..lol..[;)][^]
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I dont seem to be able to access the dictionary.[?]
If you prefer to chat over email rather than publicly you can email me through my homepage..or if you dont want your email known..you can give me a shout on my message board through the site forum..youll have to register though ...and you can use the PM system or just give me a shout and ill let you in the private area..ooerr mrs!![:D]
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The sections contain all the pages with the details of the theories. I've managed to keep them to 1 page per theory so far. Admittedly, the pages are dynamic so they extend downwards to hold the content.
I tried a menu across the top, pop-up tree menus, and floating menus that had links to all the pages, but in the end I settled on the format you'll see there. I thought it was more logical & easier to navigate like that; plus I think it looks tidier.
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Ive got the pop up now[:D] Looks good so far. The colours are easy on the eyes too which is a must if you are reading long sections of text.Good luck with it. Keep going![8D]
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Thanks, Babs.
I chose blue as it's a nice, relaxing colour (although having said that, I'm experimenting with pastel greens & yellows at the moment). Bright, multi-coloured sites are ok for certain things, but not for what I'm doing. I didn't want it to look too "busy" either. That's why I took the simple menu approach in the end. Having too many buttons or links on the page was cluttering it.
That inline dictionary was a bugger to sort out, though. In the end I found a Java applet to do it. All I do now is a search & replace through the text - search for the word I want & replace it with the applet link & description text. I've got a great little utility that will search & replace in all files of a given type in a list of folders and do the lot as a batch process. That has come in really handy a few times where I've added all the applet links then realised I've spelled something wrong!
I've got another nice program that converts text files into HTML. So I write everything in a word processor, get it converted to HTML, include it on the page, then run the search & replace. If I want to alter anything, I do it in the source text and go through the process again. It makes life so much easier. I don't know about you, but I find reading text in an HTML document a bit awkward, especially so if it's CSS with all the formatting in an external style.css file.
I'd like to eventually find a way to access an external text file with all my dictionary definitions so I don't have to include the explanation at every occurrence of the word, but that will have to wait.
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can you not do that with a link to a word doc say at the side,top or bottom of the page somewhere..you could have it open in a new window so it could stay open whilst the visitor continues to browse the site and look for definitions as they go along??
you'd just link to it like..
<a href="definitions.doc" target="_blank">ONLINE DICTIONARY</a>
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It wouldn't be too hard to get the whole dictionary to appear in a window or a frame, I've already done all that. But opening a window that stays open would take up too much space on the screen (the tag you've put would open a full-screen window). The user would also be faced with lots of other definitions they don't want. I want just the definition of the word or phrase they've clicked on to appear.
The problem is extracting the def from a dictionary. I don't know how to do that in web languages yet. It would be quite simple if I was using a database such as MySQL to hold the definitions, but I want to try to avoid server-side processing as much as possible. I read on a tech info site the other day that it's estimated 90% of PCs have JRE installed so using a Java applet seemed the obvious solution. I intend learning Java next so I reckon I'll crack it eventually. But for now, the method I'm using works well enough.