My observation: a reminder

[lindap]

My son has recently been diagnosed on the spectrum. In an effort to gain as much information as possible I have been in many forums and reading much research. I do not mean to target anyone specifically, and I don't mean to create any debate, but I would like to point out my observation.

 

Asperger's syndrome, as it is generally being described on this forum, is in the VERY VERY mild end of the spectrum, and I think people need to be reminded that just because you know a great deal about Asperger's, or have asperger's yourself, you may only know very little (if anything) about the severe end of the spectrum.

 

Please be open minded.

 

Thank you.

[oracle]

Sorry Lindap

 

But you have not read the posts on this forum in any depth if you truly believe that generally AS is being seen as 'mild' autsim. In fact you could not be any further off target. Are you sue you are posting this on the right forum?

 

It is often debated here just how disabling AS can be and is to a child or adult with the condition. In fact I will stick my neck out and say that here above all places it is the most pro-active parents forum to champion the rights of people with AS.

 

Sorry but I can not agree with you nand sorry is I have mis-read your post.

 

Carole

Edited December 7, 2005 by carole

[ceecee]

Lindap

 

I understand partly what you are saying but I personally know some about both but not everything about both.

 

My daughter had severs autistic encephalitus for six months and displayed every chateristic going so I know sadly somethings about the severe end of the spectrum.

 

I have mild as which as you say is on the other end of the spectrum.So i know some but not everything about aspergers.

 

What I do not know is what it is like to have a child on the spectrum permanently day in and day out and the challenges and fighting for their rights that go alongside that.

 

What I do know is that i personally have learnt so much from this forum and it is an open minded supportive forum, so stick around you might be surprised.

 

There are many people on here with a wealth of knowledge covering both ends of the spectrum.

[lindap]

It is often debated here just how disabling AS can be and is to a child or adult with the condition. In fact I will stick my neck out and say that here above all places it is the most pro-active parents forum to champion the rights of people with AS.

 

I agree that AS as you call it can and is quite disabling. It is a disorder after all. But from cases I have seen in clinics I have been allowed to visit, people I have spoken with, doctors, families and postings on other forums it does not compare to the other end of the spectrum. I still feel sorry for your family's hardships. Please continue to be strong.

[Suze]

I don,t know if there is a mild on the spectrum, probably severe , bad, disabling, dibilitating, but not mild.My son has a DX of ASD and AS, DYSLEXIA, DYSPRAXIA, AUDITORY PROCESSING PROBLEMS...............he struggles daily,hates himself, hates school, has no friends(his words)..........and thinks he,d be bettter of dead(his words again)....................how old is your son Lindap?...............oh and welcome to Krism .

[Tez]

Hi lindap,

 

I think on this forum we tend to accept that being diagnosed anywhere on the autistic spectrum means that a person will have significantly greater difficulty functioning in today's world than most people who are not on the spectrum. As a group, I think it would be fair to say that most of us prefer not to think of AS or HFA as the milder end of the spectrum, my son's consultant told me that he is every bit as disabled as someone diagnosed with classic autism but that his disabilities are not as obvious to others, and this in many ways adds to his difficulties.

 

I don't think any of us post on here the full extent of the difficulties we face. Our problems are not only related to schools but to every aspect of our daily lives. I think it would be fair to say that I have a lot of experience of other forms of disablilies, my mum's cousin was severely epiletic, non-verbal, low IQ and yes classical autistic, my brother spent the last year of his life paralysed due to cancer, my uncle has ms... I could go on, but the point is that I would not presume to judge whether my son was more or less disabled than them, the two things just do not compare, their difficulties are different but not necessarily greater.

 

I'd like to think that as a group we are able to offer advice and support to anyone who wants it, without being judgemental or assuming that our children are more or less disabled than anyone elses, the issue is just not relvant.

[DAS999]

My girl friend (mid 20's) has Aspergers. This is by no means mild! Yes she talks and can do most things herself. She has no fear of traffic but a huge fear of other things like the wizard or oz! She will meltdown very often hitting out, kicking and biting. she headbands and will, if very stressed stop talking for a couple of days. she will fall to the floor and put her fingers in her ears and scream or humm. She has things she has to do in a very strict order and is obsessed with thomas the tank and trains. She has a thing about numbers and hates odd number. She hardly eats a thing! On a good day we can talk about the weather and what we watched on TV or how to fix the often broken computer. On a bad day she humms and doesn't talk. This is why I believe it is called a spectrum because every one is different. I know a severly autistic boy aged 8 who can't talk or do much for himself but he NEVER kicks off and is always happy? Which is worse talking and independent who kicks off alot or non verbal, not indepentdent but never kicks off? The answer in my oppinion is NEITHER!! They are just different!

[Hectorshouse]

Hi Lindap and welcome, but I'm not sure about your comments though, these are in themselves a broad and sweeping generalisation.

 

AS is not VERY VERY mild, and this kind of comment is very unecessary, next you'll be telling us that we are over reacting, or our children are just being truculent or manipulative, or worse still its due to poor parenting.

 

I have AS, and no I don't know everything about it, I know how it affects me. My son has AS and a range of comorbids to go with it, and trust me there is nothing 'mild' about my son!

 

Also, there is no competition here about whether your child is high or low functioning, for every parent the spectrum is different and we all live with it in different ways. I have friends and who have children at the other end of the spectrum with no speach etc ... and I know how hard life is for them, just a word or maybe even a touch would make their day, year or even lifetime. No it does not compare I agree, but we all live with autism in all the various guises it presents itself.

 

And whilst you are entitled to your present your observations, please remember that some parents on here might find your comments rather distressing, there is nothing 'mild' about what our children have to go through, and no they won't grow out of it or get over it.

 

HH

Edited December 7, 2005 by Hectorshouse

[Hectorshouse]

... oh one thing for sure ... we ARE OPEN MINDED ... are you?

[mossgrove]

Lindap

 

I am not actually sure what the point you are making is.

 

You may have heard of Lorna Wing who is one of the leading authorities on Autism and was one of the people responsible for the introduction of a diagnosis of 'High Functioning' autism, which is seen by most people as being closely related to Aspergers.

 

She has now said that she very much regrets this distinction as it has been used to justify providing a vastly reduced level of support for people with HFA/Aspergers, when support needs can still be considerable, only different. In many areas this distinction is used as justification to provide no support at all for adults with HFA/Aspergers.

 

To give a relatively straightforward example a so-called higher functioining Autistic child may desperately want to have friends, and be acutley anxious and unhappy because they are all too aware that they don't fit in and lack social skills. They may have dimished understanding of their emotions leading to inappropriate behaviour such as hitting out that exacerbates the problem. They will have a need for intensive therapy anf group wprk in developing social skills and a lot of work may need to be done on recognising emotions in themselves and others, and appropriate resonses to them.

 

Another Autistic child may have a different set of difficulties. They may need far more assistance with day to day tasks. pesonal hygiene etc. but have little or no desire to socialise, so will not feel any sense of rejection or missing out as social advances can only be rejected if they are made in the first place. The may be non-verbal and need help in learning to use PECS or signing.

 

The two children have considerable needs but they differ. It doesn't advance understanding to say that one persons needs are 'very, very mild' and the other childs needs severe.

 

As far as understanding goes, it is true to say that the longer people are involved with Autism, the less comfortable they become with blanket statements like the one that you are making. I am guessing that you feel your childs needs/issues are much greater than those of many that are dscussed on this forum, and I do understand how you might feel that this is the case.

 

All I would ask is that you consider the possibility that things are not always as clear-cut as they seem.

 

 

Simon

Edited December 7, 2005 by mossgrove

[LizK]

agree that AS as you call it can and is quite disabling. It is a disorder after all. But from cases I have seen in clinics I have been allowed to visit, people I have spoken with, doctors, families and postings on other forums it does not compare to the other end of the spectrum. I still feel sorry for your family's hardships. Please continue to be strong.

 

My son has ASD on the 'milder' end of the spectrum. I choose to sometimes call it mild ASD because I believe that things could be a lot worse, he can talk, he interacts, he is loving and we don't struggle with some things like other autistic children do. But that's for my benefit, to remind myself to be grateful for what I have. However it doesn't mean he doesn't have problems or that his difficulties are very very mild. His difficulties and needs are simply different and can cause a great deal of upset and anxiety. He wants to interact, he wants to play with other children but often doesn't know how to so experiences anxiety and lonliness. A child with 'lower functioning' autism may have no deisre to play with others and hence not experience this heartache. My son has a good awareness fo the world and is interested in what is going on a round him but his sensory issues means it can be a scary and confusing place for him to make sense of. He will go to mainstream school and will have to integrate and cope in that enviroment which again is likely to throw up difficulties and challenges. I guess I'm saying similar to Mossgrove but not half so eloquently.

 

I don't really have much understanding of the difficulties faced by parents of children with more severe autism and can maybe understand why if you have a child more severely impaired that a child like mine might be seen to have less significant problems. I do consider myself 'lucky' (if that is the right word?) that my son is not more severely impaired but it doesn't mean to say that his needs are less worthy than a child with LFA, they are simply just different

 

Liz x

[Hidden Gem]

Lindap,

 

Forums are defensive places, understandably people will come to a forum to look for support,

 

You obviously want a sense of understanding, I guess that is all you asking for by asking if people are open minded.

 

No need to jump down your throat, you're just wary, unfortunately these sites become very defensive. Reacting defensivelyt your comment just shows unwilling.

 

Everyone nowadays can have acondition/syndrome/disease. That's not to belittle those who suffer or need help.

 

But society as whole is brekaing down and changing to a degree, a shift of responsibility has taken place. On a wider level becuase of this, ther eis not enoughresources to go round.

 

What you find is variations on variations, the best minds in the world struggle with human pyschology.

 

Probably your best bet is talk to those who actually understand their condition, or deal with a close family member or partner.

 

On a wider scale many other debates come into play, nature/nurture (my favourite) which make sef diagnosis (if it is mild) about as much use as one legged man in an ar*e kicking contest.

 

I've seen the harrowing, the sad and the moving here. I have sene bravery, belief and coping.

 

But I have also seen scars abuse and down right ridculous. I am sure that you will find support here.

 

I think sometimes we do all need to accept peoplefor they are, differneces and all. When we don't understand it is then we tend to label.

 

My dad was a drunk, but could I tell you why George Best drank, no, being part of something or even experienceing it does not make you an expert, people like to think it does becuase it makes them feel secure. Sadly though, it doesn't.

 

I am confident if society as a whole was more understanding there would be less pain and suffering.

 

All conditions come with different needs, but to me as human beings, we all have one simple common need.

 

Understanding and then acceptance.

Edited December 7, 2005 by Hidden Gem

[Hectorshouse]

Understanding and then acceptance.

H G ... now that I do agree with.

 

HHxx

[lindy-lou]

cant believe what ive just read there!! if you believe AS is very very mild then come and stay in mine or my sisters house for a week,i can asure you you would change your very narrowminded views.

[Elefan]

I am watching this thread with interest.

 

The opening post may understandably evoke some strong emotions. Providing replies are reasoned and non-personal, then I have no problem.

 

However, we always pride ourselves with being a forum where people can turn to, comment, seek help, and support others. Healthy debate is a good thing, but we will 'moderate' if and when necessary.

 

 

 

Kindest regards,

 

Elefan

[DaisyProudfoot]

Hi Lindap,

 

See you've read the book "how to make friends and influence them" Welcome to Krism

 

AS is very variable. My son has AS, it is described as "mild" but he still sees psychologists and psychiatrists because he has MAJOR behaviour and social skills problems which do make our lives challenging.

 

One of my friend's son's AS I would probably describe "moderate" as his difficulties are more pronounced and another friend's son's "severe" as he also suffers from learning difficulties with a mental age well below usual.

 

This is a spectrum - there are all kinds of problems associated with AS - not to mention the day-to-day difficulties of coping with a child who looks "normal" but doesn't act it.

 

I hope you will come to understand us all better in time.

 

Daisy

[Hidden Gem]

Lindy Lou

 

I don't vbelive As is mild, in fact your post confirm exactly my point, if you are aware of something, yo know about it.

 

It's those people and their immediate family/friends etc who need support.

 

In fact I don't belive you can have 'mild' AS.

 

It seems from my limited experience that as condition, even though it is a spectrum disprder it tends to manifest itself quite obviously and with consequence.

 

I spose in theory you could have 'mild', technically I guess, but if we are talking about support, then that would suggest to me mild means, fortunate to enjoy life to the full.

 

In my limited experience, that is my limited view.

 

Back to Lindap, I think a welcome is all they want.

 

If you have been feeling alone, isolated and angry, it takes a while for that to subside.

[Klou]

An interesting perception Lindlap. I personally think the mild description of AS is a sugared pill for those who, for whatever reason cannot accept someone as having an autistic condition. Unfortunately there are some relatives and friends out there and the general public at large whose only understanding seems to be of a mild form of autism and lots of work is to be done to change that.

 

My personal view is somewhat in line with the perspective presented by Jackie Jackson in Multicoloured Mayhem - AS as an extreme version of life. At least that reflects life with my undx son. I don't see how anything described as extreme can really be mild.

 

The thing I love about this forum is the acceptance that whatever the problem you are having happens to be, that for you at that time, it is the worst thing in the world. The people here offer their opinion and how they have dealt with that in themselves/with their children.

 

If I have learnt anything here it is that even with a similar diagnosis no two children are exactly the same. The condition may be expressed differently. It is that which is keeping me fighting to get recognition of my sons needs.

[Minxygal]

My personal view is somewhat in line with the perspective presented by Jackie Jackson in Multicoloured Mayhem - AS as an extreme version of life. At least that reflects life with my undx son. I don't see how anything described as extreme can really be mild.

 

 

 

I agree. Sometimes I look at my son and I do see the mild side of AS but never for very long. Often what I see is a very confused, mixed up child who needs a massive amount of support to help them function at their best. I think the 'label' that AS has as being mild can sometimes be the reason that our kids don't get the right support in school. The difficulties my youngest son has are not mild and the changes that we have had to make to our lives to accomodate him have not been mild either.

 

Lindap, I respect your right to have your own opinion, however I do wonder if you'll still think Aspergers is mild when you've lived with it for as long as some of us have and watched the effect of it on both your child and the rest of your family.

Edited December 7, 2005 by Minxygal

[ceecee]

I believe that i have mild aspergers .I do have problems with communication and emotions mainly and also being unable to read what someone else is feeling.However other areas I don't have problems in.I have only recently realised I have it and I have gone through 36 years of my life with no support because I don't need it.I bring up two children I think fairly well and i also work in an office.

 

I too will stick my neck out and say I think this is perhaps not the norm.

Many people whatever ends of the spectrum they are on weather they are an adult or a child do need support.

I am well aware on both ends of the spectrum how difficult and distressing it can be and if you have a child on any end of the spectrum experiencing difficulties whatever they may be then i would say it is the hardest position in the world to be in.I know because I have been there.

[alibaly]

Well I think that describing someone as being mildy or slightly autistic is a bit like saying someone is mildly or slightly pregnant.

 

And for a long time I've believed that my son who was diagnosed with Classic Kanners Autism at what could be called the profound end of the spectrum, actually is more 'fortunate' in many ways than those diagnosed with AS.

Edited December 7, 2005 by alibaly

[Hidden Gem]

I agree,

 

Really you have put my point much better and much clearer.

Edited December 7, 2005 by Hidden Gem

[ceecee]

I take you point but what about the many many adults that come on here and say they have suddenly realised they have As usually after watching their recently diagnosed son or daughter do things.Surely their as must be fairly mild otherwise they would have needed help or support before or they would have realised something was wrong years ago.

[mossgrove]

ceecee

 

I accept that there are paeople with AS who manage day to day life pretty well, but where we came into this was discussing whether or not Aspergers as a condition was very, very mild, which I honestly don't belive is a helpful description.

 

Although the difficulties experienced by many people with AS are often less overt than difficulties faced by so-called lower-functioning Autistics, they can be even more devesating to self-esteem and quality of life, hence the potential to cause upset by using phrases like 'very, very mild' even though I genuinely believe no offence was meant.

 

Simon

Edited December 7, 2005 by mossgrove

[ceecee]

Mossgrove

 

The phrase used by Lindlap

 

'very very mild' has the potential to offend and cause upset.I totally agree with you .No one should presume that just because someone has aspergers they are better off than someone who has autism.I know from reading all the posts on here by parents of children with aspergers what an uphill struggle it can be and my heart goes out to you all.I only had it for six months with my daughter heaven knows what it must be like to live with day after day.

 

But glad you accept there are people with AS usually some adults with as who cope with day to day life pretty well.

 

Like you say it can never be presumed that aspergers as a condition is always very very mild because quite frankly it is often not. <'> <'> <'> For all of you battling on.Best wishes

[alibaly]

Ceecee , I suspect and have done for the last 3 or 4 years that many of the people who diagnose themselves, whether they are a parent or not, aren't in actual fact on the spectrum.

[Hidden Gem]

i would say from life experience, and this is my personal view only, certainly not the be all and end all that mild As, mild anything, is normally a combination of people being different and upbringing. Environment plays a huge part in life, being shy and finding company uncomfortble does not compare ot the invidual who feels as if their world is caving in and they cannot cope in company, to a point where it is painful.

 

The child who spent their childhood taking second best, not being praised, basically never vlaued or encouraged to be confident, will most likely grow up with a certain mindset. Life could be difficult, becuase if it continues into adulthood, then the the world will seem difficult, they won't value themselves. Of course everyone is different and people react to different situations in different ways. The damage done by emotional abuse during childhood is rarely acknowledged.

 

I agree with the above comment, if you self diagnose yourslef an dno one else notices these things, kind of gives you the answer.

 

In a modern and often harsh society, resources need to be directed towards those who need it.

 

I would class AS or any other condition purely as a serious one, I don't belive you can ever have a mild condition.

 

That might seem bizarre and to some extent it makes things black and white which it is not.

 

But you can't pass off differences in human beings, things we might not be good at as 'conditions'.

 

Becuase those who do struggle, those who are affected directly or indirectly by any disorder deserve and need support.

 

To simply lump in mild quirks of personality with a whole range of disorders does a diservice to those who need the support.

 

Lastly, from what I have read and correct me if I am wrong, mild difficulties can be overcome.

 

So it seem to me tomake sense to try this, becuase people who on the other end of the scale are not so fortunate.

 

As a final note, tlaking of spectrums, I once had a colour blindness test, I scored around 99% and was told, no one is perfect, so taking the mild logic, I am mildly colour blind!

 

Do I go round saying this, no, of course not becuase it is insignificant.

Edited December 7, 2005 by Hidden Gem

[call me jaded]

they can be even more devesating to self-esteem and quality of life

 

If you could change the 'even more' to 'equally' Simon??

 

 

Lindap

 

You might like to read these from when I first joined the forum

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry27405

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry27462

 

As I said in the first thread, we should be talking about severity of need, even if that changes on a day-to-day basis.

[katkin]

Lindap, I think you have made an interesting point but I don't understand what you are saying!! I think if you read a lot of the threads on this forum you will see that parents here have children who vary wildly in their abilities/impairments/attributes/strengths just as much as in their looks and hair colour and height.

What you will find as a common thread to all is that the children have parents who love and care for them and are willing to fight for their children's corner. That is a very positive aspect of this forum. It is also a place to come for support, humour, information or just a good old moan!

I do not have a child who has ASD but have worked with children with varying special needs for some years. As I work with more people there is, I think, a growing acknowledgement that it is impossible to catagorize someone in a blanket sense. This does not just apply to ASD but also many other types of what is perceived as a disability, I suppose the most common being Down syndrome. This is particularly true though of ASD as it is as its name suggests a spectrum. Each child is different and yes Hidden Gem our cultural, education backgrounds can make a difference to an extent. (Before you all jump down my throat I am not suggesting bad parenting or anything like that - think more of the ability some parents may have or not have to access forums such as this, the ability to wade through the quagmire of DLA forms, the energy to fight that one more battle to get to tribunal, sometimes life is too tiring to get through the daily battle of getting dressed to have anything left over for emotional fights - or real ones maybe with the LEA!)

One very experienced lady I worked with used to say of each child who taught us something "That's another chapter in the book then isn't it" Meaning that we had learnt from the child another facet or part of the spectrum but would not be so arrogant as to presume that it could be applied as a blanket policy to all children. However we can take that experience or learning and perhaps come to a greater understanding of another child. Also to perhaps utilize strategies that have worked with one child to another. This is not specific to ASD though, how many childrearing, behaviour books can there be? As parents we take what works for our child. As professionals we try to find things that work for the children with whom we are working.

Less and less now I hear diagnoses given as mild or severe more that "he has ASD" - it is a part of the child, it can't be cured, it won't go away, there is no "normal" child underneath struggling to get out. The child is the child, sometimes georgeous sometimes !

Yes it is hard, I can imagine to be given a dx, the world must turn and change. It is said that parents go through a period of grief for the child they thought they had who is no longer. Yet he is still the same much loved child.

I think maybe I have gone on long enough! This is a good forum, please come again and maybe clarify your statements for the slow of understanding like me. Love Kat

[alibaly]

The latest issue of Autism Connect has an interesting article by a Professor Skuse, I think it suggests that some of us can be 'Extreme NT'

 

I might be wrong though

[ceecee]

I would say that mild difficulties can only be overcome to apoint.

 

But the reason i am saying that me personally has As only mildly is that some things I have no problem with

 

For example

 

Obsessions

Eye contact.

 

In other areas social, communication and emotionally i would say I am affected fairly badly particularly when I am stressed or tired.

 

However I think that if I ever went for a diagnosis I probably would not hit their scale so perhaps it could be said I have asperger tendancies especially as my own daughter was autistic for six months which would maybe suggest a genetic link between me and her.

[rainbow queen]

very very mild

speaking from a general veiw as my son hasnt yet been dx

very very mild is not the case

i know cause i live with it day in day out

and the very very mild has completly took over my life and all those around my son----i beg to differ that its mild

[reuby2]

I have found this forum to be extremely helpful and comforting.I get advice from people who are experiencing the day to day life of dealing with the problems that an ASD presents. In some respects the most challenging part of this is that an ASD is often a invisible disability and so peoples attitudes cause a lot of pain and misunderstanding as we are desperatly trying to help our children in a world that is frightening and uncomfortable to them.

We are all here to help one another and gain support.Nothing that causes extreme anxiety or discomfort for our children is mild.We are all trying to take one day at a time.

I think the thing about the triad of impairment (BIG WORDS FOR ME AT THIS TIME OF NIGHT!!!!!!) is what we all face. I think i know where you are coming from when you say mild, although personally i don't agree.Perhaps you mean that when refering to a certain aspect such as comunication etc, but our children all have difficulties in the same kind of areas.

Anyway sorry to ramble.

[mossgrove]

Ceecee , I suspect and have done for the last 3 or 4 years that many of the people who diagnose themselves, whether they are a parent or not, aren't in actual fact on the spectrum.

You are not the only one that thinks that.

 

There is a book called

 

Shadow Syndromes: The Mild Forms of Mental Disorder That Sabotage Us

by John J. Ratey and Catherine Johnson

 

It describes in one of the chapters people who have Autistic traits but who cannot be described as 'Autistic'. At the same time you can't really say they are NT either, which has led to the phrases 'Shadow Autism' and 'Shadow Aspergers' being used as an understanding of Autism gives valuable insights without the diagnostic criteria being fully met.

 

It would be an interesting area for research to be done because it does appear clash with the 'you are either Autistic or not Autistic' view of Autism.

 

It is a zone into which I would tentatively put myself and, I suspect some other people on this forum would do the same. I suspect that the fact that many people with strong Aspie/Autistic Traits who do not have Autism are very succesful in their chosen fields (particularly in IT and academia) hs led to the idea that Aspergers is mild.

 

For now I am content to understand that a knowledge of Aspergers gives me a lot of insight into my childhood and my life in general, while being genuinely unsure if it is anything more than that.

 

 

Simon

[oracle]

I really hate it when we enter into a debate like this because it no matter what we are all living with a condition that disrupts our live on a daily basis 365 day of the year.

 

I know my own life has changed beyond all recognition since having my two sons. Having read the resonses so far I wonder if the initial post was actually made to bait parents? Sorry but I have wondered. I really hope not. Here on this forum I hope that we support one and other no matter which part of the specturm our children are on.

 

Running a local support group I am well that parents who have children with severe autism have a very difficult life sometimes impossible life. But never has one of them said to any of us who have children with AS that we have it easy. In fact they have all said that they realise that our problems may be different to their own, but they can understanding that living with a highly verbal child who has ASD must bring a very different bag of problems.

 

It really saddens me when we feel we must quantify the needs of our children. They are all children with quite specific needs.

[phasmid]

I have been trying to find the right words to respond to this posting ever since I red it at lunchtime. I have typed in about six responses so far and then deleted them in turn before posting.

 

Have just read Caroles response:

 

I know my own life has changed beyond all recognition since having my two sons. Having read the resonses so far I wonder if the initial post was actually made to bait parents? Sorry but I have wondered. I really hope not. Here on this forum I hope that we support one and other no matter which part of the specturm our children are on.

 

Take away Carole's two sons and change them for my four and...hey presto! That is what I have been trying to say.

[Jadensmum]

I don't think I really understand what Lindap is saying here. I don't think anyone on here comments on things they don't know about. I know I can't and don't comment on anything Aspergers related because my son is on the more "severe" end of the spectrum.

 

Maybe I have taken the post completely out of context.

 

I never see anything here but support and kindness and understanding towards others. Yes, there is often healthy debate but with everything we and our kids go through, I don't think anyone here is remotely narrow minded.

 

However, I don't think the opening title or post is the best or politest way to introduce yourself to a forum.

 

 

Denisex

Edited December 7, 2005 by Jadensmum

[call me jaded]

Just to clarify. I don't feel an urge to quanitfy my son's needs at all, but feel it is a realistic expectation of those who are providing services (health, SS and education) to be able quantify, measure and above all assure the quality of the service that they are providing. To do that they need benchmarks. I want the benchmarks to be based on needs rather than a level of disability.

[LizK]

It describes in one of the chapters people who have Autistic traits but who cannot be described as 'Autistic'. At the same time you can't really say they are NT either, which has led to the phrases 'Shadow Autism' and 'Shadow Aspergers' being used as an understanding of Autism gives valuable insights without the diagnostic criteria being fully met.

 

It would be an interesting area for research to be done because it does appear clash with the 'you are either Autistic or not Autistic' view of Autism

 

Tony Attwood talks about a grey area between 'normality' and ASD in his book, think it's only a small section but interesting. Think he talks about it being a sliding scale rather than definite have or have not. Makes you also rethink what defines 'normal' too. It's normal to have personality traits so why should ahving AS traits be any different? My H likely falls in this grey area. He has AS traits but hasn't got AS itself though as a child he would have fulfilled a lot of the criteria for AS. Psychiatrist friend is getting more of these kids referred to his service. They aren't on the autistic spectrum but still have some degree of difficulties but there is so little support or help available for them as they haven't got a label so are left floundering. In some ways despite them being 'milder' they are worse off than a child with a diagnosis of ASD as at least some help comes with the label.

 

For now I am content to understand that a knowledge of Aspergers gives me a lot of insight into my childhood and my life in general, while being genuinely unsure if it is anything more than that.

 

And for my H it means has a better insight into how my son's mind works and can relate to some of the wyas he is far better than I ever could. The disadvantage for my H has been the hope that like him my son would mature out of his difficulties when my son infact has ASD itself and is clearly more affected than my H was as a child

 

Liz x

[call me jaded]

That was why I was interested in the 12 question test. The author was suggesting that a large scale trial would give an estimate of how many undiagnosed people are out there.