Mmm... not sure what to call this

[madme]

I don't post that often. I come here for support and have found a lot over the years. I have to say I'm quite upset by what appears to be an underlying current of criticism. None or perhaps I should say few of us are experts on autism and aspergers. Most who post have a child diagnosed or awaiting diagnosis or are diagnosed themselves. I agree not everyone has asd or asd traits. If someone thinks that there child may have it then there is likely to be an issue somewhere - whether it is asd or not. I agree that we shouldnt self diagnose but sometimes I get this feeling that some almost have the approach - well I'm in the club but I don't want everyone to join. These little comments every now and then just upset me. I can recall knowing that my son was different and feeling scared of admitting it. Posting sometimes takes a lot of guts.

 

I will now get off my high horse and hope that I haven't upset anyone.

[bid]

Hi Madme

 

I guess it's that perennial problem of balancing different needs and perspectives.

 

I have a formal dx of AS, and being honest it does make me feel uncomfortable when people self-diagnose, not because I feel I belong to a special club although I can see how it might look like that. I think part of why I feel uncomfortable is probably that autistic pedantic and literal thing in the sense that it's not accurate to say you have AS if you haven't been diagnosed. The other reason it makes me uncomfortable is that it sort of dilutes the seriousness of having autism if anyone can decide it's what they've got.

 

I hope I haven't offended anyone, just being honest about my perspective. But I can see why you feel uncomfortable, too, Madme and I agree that it does take a lot of courage to post about these kinds of concerns. My son already had a dx when I joined the forum, so I wasn't in that situation, but I did get a lot of support when I was going through my own diagnostic process. Just remembered that my youngest did go through the assessment process and didn't have ASD, and again I got a lot of support here, and looking back I'm sure sometimes people offered different explanations for his behaviour which I don't think upset me.

 

Bid

Edited April 27, 2009 by bid

[Diane]

Sadly I come across a lot of parents who self diagnose their children to excuse their behaviour. It makes me cross. It is not to say that some parents are not right it is just that they are so blase about it.

 

For me it has been a traumatic journey and certainly nothing to be laughed about or belittled. I guess there is a lot of ignorance out there as I know that a lot of us on here come across.

 

 

[bikemad]

I know what you are saying.....yes there are those who use it as a way to let their kids do whatever but I know exactly what you are saying its hard to admit your child has a problem n takes guts to post n there are replies that make you wonder why you bother posting......ive had days were I think I really dont need to be preached at by the odd few people who seem to post with a real attitude of I know best n can sound mean with it so I just dont even visit th forum.....shame as people are posting for constructive help.

[sonj186]

Im aware there are some people with very strong opinions on certain things who use the forum, however i find it very humbling just how many people take time out of their day to answer any questions i post, there are so many people willing to share there wisdom and experiences dont let a few negative issues put you off posting

 

[madme]

Can I just add both my children are diagnosed. My son is a teenager diagnosed over 6 years ago with Hyperkinetic disorder , asd traits and dyspraxia and a couple of years later with Aspergers. My daughter was diagnosed Aspergers 18 months ago. Both were NHS diagnoses and by teams.

Can I also make it clear that none of the posts that have upset me have been made in response to my posts. I can just remember how it was and how desperate I was for answers. In fact I never ventured on a site like this pre diagnosis as in fact I really had issues about admitting that there was a problem

Edited April 27, 2009 by madme

[baddad]

I think bid's post coupled with Diane's pretty much sums up how I feel. I'd be surprised if anyone felt or wanted to maintain autism as an 'exclusive club', but personally when i see autism used (whether dx'd or home diagnosed) to excuse just about every negative behaviour on the planet or as a stick to beat parents of non-disabled children over the head with it does offend me. I think, first and foremost that any forum should be about supporting autistic people and their parents, and for me that includes being realistic about the dangers of stereotyping, misrepresentation, prejudice and 'blame', regardless of whether those dangers are arising from social or parental responses to autism.

 

L&P

 

BD

[Tally]

Given the difficulties with accessing assessments, there are many undiagnosed autistics out there.

 

For a while I was undiagnosed, but fairly convinced that I had Asperger's. An NHS assessment was out of the question for me after a psychologist ruled out the possibility of Asperger's because I made eye contact with her once during a half-hour session. For this reason, I had no other option to seek a private assessment, which resulted in a diagnosis of Asperger's. This diagnosis has enabled me to apply for DLA, which has helped me support myself financially. It has also enabled me to receive appropriate treatment for depression, and to understand why previous treatments failed (I was previously labelled non-compliant when I failed to recover). It has also helped me to feel better about myself and the difficulties I have had, instead of blaming myself and feeling guilty for not being able to act normal. So a diagnosis is a very important thing to me.

 

Through learning about Asperger's, my mum has come to the conclusion that my dad probably has AS too. She has raised it with him, but he refuses to entertain the possibility, and she has decided not to press the issue. Nevertheless, she has found that learning about Asperger's and how it can affect relationships has enabled her to understand him better and to improve the way they communicate with each other. It has also given my mum the confidence to tell him things more frankly than she previously would have, and he has taken her advice and got more out of social situations as a result. We will never know for certain whether my dad actually has AS, but assuming he probably does, and adopting techniques useful for people with Asperger's, has been positive in this case. So a diagnosis is not always necessary to make a difference.

[cmuir]

Hi

 

I can see where you're coming from. I guess some of these posts are from well-meaning people who are trying to encourage caution. It can be a long, long, exhausting and emotionally difficult road getting a diagnosis and it shouldn't be. Sadly, because there are often several professionals involved in diagnosing a child, it can take an incredibly long time. I must say, from my own experience, I knew something was wrong with my child. The more I read, I became as sure as I could be that R had AS. Our own HV, GP and Paed were adamant that R didn't have AS. Thankfully, I'm a big believer in gut feeling and so continued to seek answers because although R didn't tick every box, he wasn't far off it. We eventually saw a specialist who diagnosed R with AS. The older becomes, the more obvious it is that that was the right diagnosis for him. Some may disagree with me (and have in the past), but I believe as a parent, I had every right to say to Paeds, etc, that 'although I'm no expert, I think my son shows some traits consistent with AS - what do you think?'. I'm a big believer in a mother's instinct - as you've said, if you think something's wrong, pursue it until you get answers (irrespective of whether that answer is an ASD diagnosis or otherwise).

 

Caroline.

Edited April 28, 2009 by cmuir

[bid]

Slight digression over gut/mother's instincts always being correct...

 

I was sure something was 'wrong' with DS#1, and I was quite right. So I can say my 'mother's instinct' was absolutely spot on.

 

BUT, I was equally sure that DS#2 had an ASD. And having gone through the whole CDC assessment process and DS having matured I was happy to accept I was wrong and the professionals were absolutely right that he wasn't on the spectrum. So in that instance my 'mother's instinct' was completely wrong!

 

Bid

Edited April 28, 2009 by bid

[joanne1]

I joined on here in January before ds was dx. I always knew there was something different about him but didn't know what. He is 13 and was dx in March. It has been about a year and half since anyone professional suggested the autistic spectrum to us. I have to say I didn't even know there was a spectrum. I always thought of autism as rain man! But for a year of waiting to be dx, and having the word 'autism' in my mind was hell. Very emotional and upsetting and wondering about it. Being told that yes it looks like he is on the spectrum but having to wait for such a long time was awful. I found this site and was so glad even though we at that point weren't dx. It made me feel not so alone, and kept me sane. I didn't self dx my son so I don't fall in that slot but I posted before dx and am glad I did. This site and peoples kind words helped me so much, as I was in turmoil.

[Mandapanda]

Hi madme

 

I try to keep in mind that at least some of the parents posting on here will at least have some traits of ASD and therefore may think rather differently. Also typing on a computer conveys no emotion (either compassion or hostility) and can easily be misinterpreted. If someone is rude or blunt or appears to be questioning or criticising something I am doing, I'm afraid I just think "Perhaps they don't mean it like it sounds".

 

There are plenty of people on here who are very caring, kind and offer very helpful points of view, ideas and suggestions, but are also better at wording it in a kind and caring way!!

[bid]

Hi madme

 

I try to keep in mind that at least some of the parents posting on here will at least have some traits of ASD and therefore may think rather differently. Also typing on a computer conveys no emotion (either compassion or hostility) and can easily be misinterpreted. If someone is rude or blunt or appears to be questioning or criticising something I am doing, I'm afraid I just think "Perhaps they don't mean it like it sounds".

 

There are plenty of people on here who are very caring, kind and offer very helpful points of view, ideas and suggestions, but are also better at wording it in a kind and caring way!!

 

 

Bid

Edited April 28, 2009 by bid

[baddad]

Hi madme

 

I try to keep in mind that at least some of the parents posting on here will at least have some traits of ASD and therefore may think rather differently. Also typing on a computer conveys no emotion (either compassion or hostility) and can easily be misinterpreted. If someone is rude or blunt or appears to be questioning or criticising something I am doing, I'm afraid I just think "Perhaps they don't mean it like it sounds".

 

There are plenty of people on here who are very caring, kind and offer very helpful points of view, ideas and suggestions, but are also better at wording it in a kind and caring way!!

 

Well there you go then: just ignore the people who have ASD or ASD 'traits' - they can't help themsleves!

Hi mandapanda - I'm sure you didn't mean that the way it came across, and hopefully someone else who is kind, caring and very helpful will be along soon to present your thoughts for you in a kinder and more caring way!

 

Boy - i'd hate to be autistic around here... 'cos it seems that if you say what people want you to say it's ever so bright of you, but if you say what people don't want to hear they just ignore you because you are too flawed to have a valid opinion!

 

Amandapanda - I really do know that you didn't mean that the way it sounded, so please don't take offence. i'm just making a very valid point (IMO) on behalf of our members who might be 'a little bit special'.

 

L&P (as always)

 

BD

[bid]

Thanks BD for expressing what I wanted to say but in a far more kind and caring way than I could have managed, what with being a little bit special myself!

 

Seriously Manda, if 'thinking rather differently' means that I think parents aren't always right, that children with ASD need very firm boundaries, and that autism isn't a 'get out of jail free' card then I guess I must think rather differently!

 

But then what would I know, being an autistic parent and all...

 

Bid

Edited April 28, 2009 by bid

[Mandapanda]

Apologies to all those I have offended. I am obviously one of those people who doesn't word things very well!!

 

However... you can't claim that people with autism understand and perceives things differently and then object when I say that - surely?????

 

(NB: I have 'previous' when it comes to making assumptions. I used to belong to MENSA. I thought when I met up with other members that we would all think the same way because we were all 'intelligent'. How wrong I was!!)

[bid]

However... you can't claim that people with autism understand and perceives things differently and then object when I say that - surely?????

 

Maybe it was following that comment with the one about other people who can offer help in a more kind and caring way?!

 

The implication (unintentional I'm sure) was that people who are autistic are unable to do this.

 

Bid

Edited April 28, 2009 by bid

[baddad]

Hi again -

 

amanda, you haven't offended me, and i'm not sure I'm qualified, but I'll try, given the post above, to answer again for 'bid' and the rest of our autistic community...

I don't think the problem is with the idea that people with autism perceive/understand things differently, but with the idea that if someone comes across as rude it probably means they're autistic!

That's not the same thing at all - the first (perceives/understands) is a real factor of autism, the second is a stereotypical value judgement based on a neurotypical perception/understanding of autism!

If you go through life assuming that every miserable, opinionated old get you meet is autistic you're absolutly wrong> there are millions of miserable, opinionated old gets out there in NT land too!

The things i think are really rude on this forum are when people are dismissed out of hand because their opinions are not popular, when people are gainsayed and accused of bullying for holding opinions contrary to the majority and when autistic people are patronised within a community that is supposed to represent them and/or their needs.

There really are enough professionals out there doing that (we had a situation recently where one of those professionals voiced pretty much the same suggestion as yourself; that they 'accepted' (I won't name the member concerned as it's not my place to do so) couldn't see their point of view because their autism compromised their judgement'...

 

Hope that helps, and as i say, certainly no offence taken by me. If anyone does take offence (or takes offence to my responses to your post) I'm sure it won't be - either on your or my part - because offence was intended.

 

L&P

 

BD

[szxmum]

I joined on here in January before ds was dx. I always knew there was something different about him but didn't know what. He is 13 and was dx in March. It has been about a year and half since anyone professional suggested the autistic spectrum to us. I have to say I didn't even know there was a spectrum. I always thought of autism as rain man! But for a year of waiting to be dx, and having the word 'autism' in my mind was hell. Very emotional and upsetting and wondering about it. Being told that yes it looks like he is on the spectrum but having to wait for such a long time was awful. I found this site and was so glad even though we at that point weren't dx. It made me feel not so alone, and kept me sane. I didn't self dx my son so I don't fall in that slot but I posted before dx and am glad I did. This site and peoples kind words helped me so much, as I was in turmoil.

 

I can so relate to this post, I could have written it myself.

 

I can still feel the cold sweat that ran through my body when they first mentioned Autism, Aspergers and ds in the same sentence. I too thought of Rainman or I'm ashamed to say a non-verbal person sitting rocking.

 

I too have posted without having an official, written dx and am so glad I did - I have received an immense amount of support from people that I don't know who have given up their time to respond to my posts. I no longer feel alone and the relief that that brings is priceless.

 

I have read a lot of these posts and have seen so many in-depth discussions about is it or is it not Autism. My own feeling is this should not be a dx-only club - surely what is important is the outcome in people's lives and make no mistake, that can be devastating, I almost lost my son. I don't like to think how close we came to being a "tragic" statistic through not knowing and not understanding.

 

In my mind, raising awareness and helping and supporting people with the outcome of Autism is what is important - vitally important.

[szxmum]

That last sentence of mine comes over all wrong because it assumes a negative outcome but I don't know how to word it any better

Edited April 28, 2009 by szxmum

[bid]

WOAH!!

 

Joanne and Szxmum: no-one is saying that you can't post on this forum pre-dx!! <'>

 

Bid

Edited April 28, 2009 by bid

[Karen A]

Hi all.I thought it worth sharing a bit of my experience here for people who may not know.

When I joined the Forum nearly three years ago I was in a bit of a state of shock.

Although I knew a bit about ASD it was through experience of a friend's son who has profound autiasm.

When a teacher at Ben's school mentioned that Ben reminded her of her son and her son had AS I was confused.

A parent who is still a Forum member here suggested the Forum might be helpful.

I have posted elsewhere in more detail so I will not go over it all again.

However we started CAMHS assessments for Ben three years ago.

After detailed and extremely difficult assessments CAMHS decided that Ben had dyspraxia and social communication difficulties [some AS traits but not enough for dx].

We spent two years in weekly psychotherapy because CAMHS were sure that Ben's difficulties were more likely to be related to something like attachment disorder.

Throughout the time mentioned I have been actively involved in the Forum.

Last year I spent some time as a moderator on the Forum too.

It was only a few months ago that CAMHS diagnosed Ben following a 3di.The 3di was done purely because Ben decided himself that he would like to know if he had AS.

All I can say is in all of this time the Forum has been a huge support.

Certainly Admin and the moderators do not have any issue with those who do not have a clear dx.If they did they would not have asked me to be a moderator.

In the time I have been a Forum member there are not many days when I have not been on the Forum at some point.

I think that the reality is that at anyone time the single largest group of Forum users is probably those who do not have a diagnosis and are hoping to obtain information.

The proportion of people who become Forum addicts like myself is relatively small.

 

I think perhaps that there have been a few threads in the last few weeks that happen to hit on sensitive issues.

However I am not sure that they representative of the Forum as a whole.Karen.

[Karen A]

WOAH!!

 

Joanne and Szxmum: no-one is saying that you can't post on this forum pre-dx!! <'>

 

Bid

 

Better not be......that would be about 30000 of my posts to moderate.

Come to think of it we don't have a AS dx in writing yet and have never had the follow up meeting.

 

[Karen A]

I don't post that often. I come here for support and have found a lot over the years. I have to say I'm quite upset by what appears to be an underlying current of criticism. None or perhaps I should say few of us are experts on autism and aspergers. Most who post have a child diagnosed or awaiting diagnosis or are diagnosed themselves. I agree not everyone has asd or asd traits. If someone thinks that there child may have it then there is likely to be an issue somewhere - whether it is asd or not. I agree that we shouldnt self diagnose but sometimes I get this feeling that some almost have the approach - well I'm in the club but I don't want everyone to join. These little comments every now and then just upset me. I can recall knowing that my son was different and feeling scared of admitting it. Posting sometimes takes a lot of guts.

 

I will now get off my high horse and hope that I haven't upset anyone.

 

I just thought I would mention that you are right that none of us are experts on ASD.

Well I should clarify before I offend any of the professionals [sENCO'S,TAs and psychologist .....sorry if I have missed anyone] who happen to be here for personal reasons.

 

 

[Sally44]

For those of us that have obtained a diagnosis I supposed we are 'in the club'.

But as Tally said, there are many posts made by parents and individuals about how a diagnosis has not been given because the child could make eye contact, or showed empathy etc. I suppose the goal posts have to be put somewhere, but there are also plenty of adults with those same abilities posting on the internet about how many on the spectrum can do things they are not supposed to be able to do. I was amazed at seeing an Amanda Baggs video on You Tube. I know she is diagnosed, but her superficial appearance suggests a much more severe disability. Her 'speech through the computer' shows how capable and intelligent she is.

I think we all know how different our children are and that behaviours are on a sliding scale. So for those that cannot get a diagnosis I don't see what else they can do other than self diagnose.

And if the current level of diagnosis is not an 'explosion' but is down to professionals doing a better job of diagnosing children, then those 'undiagnosed' adults are out there somewhere!

[Mandapanda]

I don't think the problem is with the idea that people with autism perceive/understand things differently, but with the idea that if someone comes across as rude it probably means they're autistic!

 

Hi baddad

 

I didn't say that people who are rude and blunt are autistic. The sentences weren't meant to be related - that proves my point that typed words can be misinterpreted. Sorry to you and to BID.

 

My other point is that I have no problem with people who give a totally different or opposite point of view (and indeed I value those views), just that sometimes the wording can come across as being critical of what I/we are or are not doing in the relevant situation. Sometimes other people seem annoyed when I don't agree with them - like they're stating a fact so I should agree. I can be very pedantic about wording (even though I am perfectly capable of getting it all wrong myself) and it does cause problems between me and other people from time to time. When I recently was offended by your reply to my post I was on the verge of a breakdown, so probably took it more personally than I should have done. At the time I felt I was being attacked by a few people and didn't think I would come on the forum again. But it has proved invaluable for suggestions on the right people to contact to access support and procedures for applying for statements etc. The discipline type issues are a much more subjective and emotional area.

 

My children have never been allowed to use AS as an excuse for bad behaviour and I have never used that 'excuse' to other people. But, if you follow the same 'behaviour training system' with all children you probably will not get the same results with all of them. Therefore, just because a method or idea has worked with other children doesn't mean I (or anyone else) should 'accept' that it would work with mine. Children (and adults) with ASDs vary and their inherent personalities vary too, leading to an infinite variety of combinations and therefore, potentially, a variety of possible solutions. I must say I have found dealing with a child who suffers from severe anxiety and depression on top of ASD is a very different kettle of fish to dealing with a child with 'straightforward' Asperger's.

 

So basically, I don't expect you to always agree with me, but don't expect me to always agree with you either!! But I think some of us (including me) might just be proving madme's point!!!

 

(NB: The views/comments expressed above are solely attributable to myself and not any organisation, group or other individual. They are my personal opinions based on my own personal experience and thinking and may not be appropriate to any other situation or individual.)

 

 

[lisac]

Hi madme

 

I try to keep in mind that at least some of the parents posting on here will at least have some traits of ASD and therefore may think rather differently. Also typing on a computer conveys no emotion (either compassion or hostility) and can easily be misinterpreted. If someone is rude or blunt or appears to be questioning or criticising something I am doing, I'm afraid I just think "Perhaps they don't mean it like it sounds".

 

There are plenty of people on here who are very caring, kind and offer very helpful points of view, ideas and suggestions, but are also better at wording it in a kind and caring way!!

 

I cant read/see what is so wrong with this post, ? maybe some reading this are being a bit over sensitive or even 'looking for conflict' seek and ye shall find eh, ,x

[baddad]

For those of us that have obtained a diagnosis I supposed we are 'in the club'.

But as Tally said, there are many posts made by parents and individuals about how a diagnosis has not been given because the child could make eye contact, or showed empathy etc. I suppose the goal posts have to be put somewhere, but there are also plenty of adults with those same abilities posting on the internet about how many on the spectrum can do things they are not supposed to be able to do. I was amazed at seeing an Amanda Baggs video on You Tube. I know she is diagnosed, but her superficial appearance suggests a much more severe disability. Her 'speech through the computer' shows how capable and intelligent she is.

I think we all know how different our children are and that behaviours are on a sliding scale. So for those that cannot get a diagnosis I don't see what else they can do other than self diagnose.

And if the current level of diagnosis is not an 'explosion' but is down to professionals doing a better job of diagnosing children, then those 'undiagnosed' adults are out there somewhere!

 

As bid said above - where has this idea of a 'dx club' come from?

But your last sentence says it all:

So for those that cannot get a diagnosis I don't see what else they can do other than self diagnose.

Maybe some of those people, after repeated referals to trained professionals etc - have to accept that they maybe wrong about their home diagnosis? There's a huge difference between someone who says 'I believe my son is autistic and am seeking to find out more' than someone saying 'my son is autistic but no one will take my home diagnosis seriously'. I've used this analogy (or a variation thereof) before - but if you read a newspaper report of a parent killing their child by attempting a 'home appendectomy' after arriving at the conclusion that their instincts told them it was both the correct diagnosis and that they, though untrained, were competent to perform it would you think it reasonable?

yet on this forum and outside of it people are quite happy to diagnose husbands/wives/cousins/aunties/next door neighbours/ their children/ themselves/ their dog/ their cat/ mrs miggins from the pie shop purely on the basis of what they've read on the internet and 'gut instinct'. And quite often if the other party disagrees they'll assume that this is because the other party is 'in denial'.

Exactly the same assumprtions are made - post dx - about behaviour. How many times has the subject of 'I'm not naughty, i'm autistic' or 'Im autistic - what's your excuse'? T shirts come up on this or other forums? Thank god they are cropping up less often now, but sadly as posts on this forum show it's not because people are accepting that not all bad behaviour is attributable to autism - it's because the t-shirt sellers have responded to the lashback from the small minority who see it as offensive, patronising and 'wrong'.

Every time there's a mass murder the press speculate about autism, and 99% of parents then say 'there is no evidence...etcetcetc... But these are the same parents who claim that their own child's violence is attributable to autism...

 

Lisac. just seem your post. the reasons why some people might have found the post offensive are above. scroll up the page.

 

I totally, 110% agree with you about 'seek and yeah shall find' and people being oversensitive. Another old addage i agree with is 'there's none so blind', because almost every coherent argumment against 'patronising', 'demonising', 'blaming' 'excusing' and enabling (not the good kind) autistic people/autistic behaviours gets shouted down in a barrage of emoshunal outrage and accusation.

 

sorry - wander from the point, OP, and there are so many strands to this particular thread now I think i'll bow out.

 

L&P

 

BD

[Sally44]

My comment about being in a dx club is how it I think it might appear to someone on the 'undiagnosed' side of the fence looking in. I don't feel like that, and I am not happy with that view. But for someone struggling to get answers and recognition and help it must feel like the dx have the golden ticket and they don't.

 

And yes, maybe those that don't get a diagnosis after many referals do have to accept that. But what about their difficulties. Where are they pigeon holed in the SEN system? And professionals do not all agree on who meets the criteria and who doesn't because you can get a second opinion that is totally different to the first opinion. And things like Sensory Integration Disorder are not even part of the diagnostic criteria for an ASD. And as ASDs are on a sliding scale, where do you draw the line and say those on the right of the line have ASD and those on the left don't. Would a non-verbal autistic person who could demonstrate empathy be less 'autistic' than someone with Aspergers who could not demonstrate empathy at all? I don't know the answers to these questions. Should an autistic child be able to lie, be devious and deceitful - don't you need theory of mind for that - aren't those on the spectrum supposed to have difficulties with theory of mind. Again I don't know, and it does puzzle me.

Regarding people being blunt, literal or rude - anyone can be those things with or without a diagnosis. However have you seen the NAS adverts they ran about firstly a man having a meltdown because he could not get onto a train who had to be marched off by security and secondly a man in a works canteen, in replying to a work colleague's question about why her relationship might have finished commented "maybe it is because you are fat." Not everyone with an ASD would become agitated to the point of being frog marched off a train platform or make that level of social gaff - or would they, I don't know. But obviously those at the NAS thought that it was a relevant and valid point to be making about the difficulties experienced by those with an ASD.

 

[bid]

My comment about being in a dx club is how it I think it might appear to someone on the 'undiagnosed' side of the fence looking in. I don't feel like that, and I am not happy with that view. But for someone struggling to get answers and recognition and help it must feel like the dx have the golden ticket and they don't.

 

And yes, maybe those that don't get a diagnosis after many referals do have to accept that. But what about their difficulties. Where are they pigeon holed in the SEN system? And professionals do not all agree on who meets the criteria and who doesn't because you can get a second opinion that is totally different to the first opinion. And things like Sensory Integration Disorder are not even part of the diagnostic criteria for an ASD. And as ASDs are on a sliding scale, where do you draw the line and say those on the right of the line have ASD and those on the left don't. Would a non-verbal autistic person who could demonstrate empathy be less 'autistic' than someone with Aspergers who could not demonstrate empathy at all? I don't know the answers to these questions. Should an autistic child be able to lie, be devious and deceitful - don't you need theory of mind for that - aren't those on the spectrum supposed to have difficulties with theory of mind. Again I don't know, and it does puzzle me.

Regarding people being blunt, literal or rude - anyone can be those things with or without a diagnosis. However have you seen the NAS adverts they ran about firstly a man having a meltdown because he could not get onto a train who had to be marched off by security and secondly a man in a works canteen, in replying to a work colleague's question about why her relationship might have finished commented "maybe it is because you are fat." Not everyone with an ASD would become agitated to the point of being frog marched off a train platform or make that level of social gaff - or would they, I don't know. But obviously those at the NAS thought that it was a relevant and valid point to be making about the difficulties experienced by those with an ASD.

 

I quite agree that anyone with dificulties does need help and support.

 

I just don't think self-diagnosis is the way to get this. In actual fact, professionals in health, education and SS will ignore a self-dx. Before my dad's autism was identified during mental healthg assessments towards the end of his life, we were in the situation of trying to explain in A&E that we suspected he has AS. The only thing they wanted to know was who diagnosed him. Similarly, I was in A&E a few months ago, and again I was asked who diagnosed me.

 

So, while I really do understand the frustration and loneliness of pre-dx, having been there three times (twice for two of my children and once for myself), I genuinely believe self-dx does more harm than good in the long run.

 

I too will bow out now.

 

Bid

 

 

 

[baddad]

My comment about being in a dx club is how it I think it might appear to someone on the 'undiagnosed' side of the fence looking in. I don't feel like that, and I am not happy with that view. But for someone struggling to get answers and recognition and help it must feel like the dx have the golden ticket and they don't.

 

And yes, maybe those that don't get a diagnosis after many referals do have to accept that. But what about their difficulties. Where are they pigeon holed in the SEN system? And professionals do not all agree on who meets the criteria and who doesn't because you can get a second opinion that is totally different to the first opinion. And things like Sensory Integration Disorder are not even part of the diagnostic criteria for an ASD. And as ASDs are on a sliding scale, where do you draw the line and say those on the right of the line have ASD and those on the left don't. Would a non-verbal autistic person who could demonstrate empathy be less 'autistic' than someone with Aspergers who could not demonstrate empathy at all? I don't know the answers to these questions. Should an autistic child be able to lie, be devious and deceitful - don't you need theory of mind for that - aren't those on the spectrum supposed to have difficulties with theory of mind. Again I don't know, and it does puzzle me.

Regarding people being blunt, literal or rude - anyone can be those things with or without a diagnosis. However have you seen the NAS adverts they ran about firstly a man having a meltdown because he could not get onto a train who had to be marched off by security and secondly a man in a works canteen, in replying to a work colleague's question about why her relationship might have finished commented "maybe it is because you are fat." Not everyone with an ASD would become agitated to the point of being frog marched off a train platform or make that level of social gaff - or would they, I don't know. But obviously those at the NAS thought that it was a relevant and valid point to be making about the difficulties experienced by those with an ASD.

very quickly - because i really do want to get out of this but don't like not replying:

 

Difficulties/not ASD - I'm a very vocal advocate for holistic assessment rather than interventions based on medical models. You'll find i've made many, many posts to that effect.

ASD/Sliding scale: I don't know where the line gets drawn - that's why diagnosis should be done by trained professionals using the diagnostic criteria. i do believe, though, that the lines are already so blurred at the HFA/AS end as to be problematic. Certainly the idea of a significant disability in day to day living seems to be being eroded... as for lying/theory of mind/empathy. Autistic people are compromised in this area, not necessarily totally unable to function. Yes, autistic people can lie - even autistic children - not all, but at the HF end of the spectrum I'd say a complete inability to lie was the exception rather than the rule. T.O.M. will almost certainly be delayed in autistic children, but at it's most basic level T.O.M. is if your child can look in a mirror and realise that the reflected image is him/her he has the rudiments of theory of mind. Most NT babie learn this at around 18 months. i have never, personally, met a HF autistic who hasn't developed this understanding by the age of around five. Empathy is a sliding scale in it's own right. I suspect many ideas about NT empathy are myths - anyone, IMO who can watch a live aid film of children starving and then say 'well i'm not giving them anything because it probably just gets spent by the goverment' is completely lacking in empathy. My son, at eleven, certainly has a moral conscience that would prohibit that. is moral conscience empathy? I don't know - but if it isn't, and i have to choose between NT empathy that will enable him to watch children dying without reacting or moral conscience that won't - i'll plump for the latter. He certainly feels 'love' but I have no idea if it's the same as 'NT' love? I think it's just as strong, but less complicated! Further down the 'continuum' I think it is probably different. I think here you have to look at 'Maslow's Heirarchy'...

NAS ads - by definition the NAS (any charity) has to go for the stereotypes. It's getting better - you can at least pick up a downs syndrome leaflet now that hasn't got a child in a wheelchair abseiling down the side of a cliff, but it will probably still have one at a fete with face painting and a balloon

Look at the response to the local campaign with the boy 'trapped' inside an autism monster to see how charities are still geared to manipulating stereotypes for sympathy. That's not to say these things don't happen/couldn't happen, but they would not be everyday features for many HF/AS people living independently at that sort of level (or not the independent HF/AS people i know, at least).

 

 

Hope that clarifies MY views on the points you've raised. Others may have different views.

 

L&P

 

BD

[barefoot wend]

Madme

 

I agree with you.

 

Barefoot

[hamish]

Hi,

 

I think the whole discussion about the autistic spectrum and traits and whether it is right or possible to draw a line in the sand (so to speak) is facinating.

I think the original poster on the other thread was right about a lightbulb moment and this is probably something that happens to most people. In my case it was my son being dx ADHD which led me to read books on ADHD which often talked about ASD and the similarities which led me to read a lot about ASD and realise that my son presented a complicated picture but also gave me that lightbulb moment about other family members.

However I do recognise that it is unlikely that anyone in my family would meet the full dx criteria and it is possible that my son won't either, his doctors agree he has ASD traits but won't commit further than ADHD at the moment.

That said, these traits cause a huge amount of difficulty and stress in his life and for the rest of the family so where do you go from here? I can fully understand why my son does not fully fit the picture of autistic but we still have significant problems and I whilst I wouldn't wish to see a dx of ASD becoming commonplace and an explanation for all behavioural issues I feel that kids like my son can fly under the radar. I think this is why many parents (myself included) push for a an assessment or dx as it seems to be the only way to access help.

I hope that in the future there is a move towards a wider professional understanding of the spectrum and that children that need it can access help without needing to be shoehorned into a specific dx which might not benefit them as they get older.

These are just my thoughts based on my experience so I hope I haven't offended anyone.

[szxmum]

I promised myself that I wouldn't read this forum or post today - I've failed miserably

 

 

 

Hi,

I hope that in the future there is a move towards a wider professional understanding of the spectrum and that children that need it can access help without needing to be shoehorned into a specific dx which might not benefit them as they get older.

 

A very well-worded post Hamish (much better than some of my own ham-fisted attempts )

 

 

My hope is the same as yours and I would expand on it - I hope for a wider professional understanding of the spectrum that enables children who are "flying under the radar" to be pro-actively identified and supported earlier thus avoiding or lessening the impact of mental health problems.

[nellie]

Madme,

 

I agree, I feel the same.

 

Nellie xx

[Karen A]

I promised myself that I wouldn't read this forum or post today - I've failed miserably

 

 

 

 

 

A very well-worded post Hamish (much better than some of my own ham-fisted attempts )

 

 

My hope is the same as yours and I would expand on it - I hope for a wider professional understanding of the spectrum that enables children who are "flying under the radar" to be pro-actively identified and supported earlier thus avoiding or lessening the impact of mental health problems.

 

I would agree with that completely.Karen.

 

[baddad]

I would agree with that completely.Karen.

 

me too. As i said earlier, i'm all for holistic assesment, which is basically 'better radar' and better understanding of what the 'blips' the radar picks up mean

 

L&P

 

BD

 

PS: A thought has just occurred to me that is maybe a way of resolving this. I didn't want to do it 'off my own bat' but perhaps madme could add a 'poll' to this (or start one) that took all of the 'greys' out of the equation(?)

a simple single question, something like:

 

Q: Should the forum offer support to those who are seeking diagnosis as well as those who have already obtained diagnosis?

 

I'm sure anyone who felt/feels that there is a negative faction on the forum would be fully reassured.

For myself, I can certainly answer 'yes', but - as i said - I don't want to hi-jack madme's thread by starting the poll myself (well that, and the fact that despite 5 years or whatever 'in the saddle' I've never yet set up a poll!)

Hope that's helpful...

 

Edited April 29, 2009 by baddad

[bid]

I cant read/see what is so wrong with this post, ? maybe some reading this are being a bit over sensitive or even 'looking for conflict' seek and ye shall find eh, ,x

 

I have been a member here for over 5 years.

 

We have always had members, like myself, with a dx of ASD. There have never been any comments like this about us that I can remember...we have always just been members, some of us parents too, and no specific remarks have ever been made about our posting style or our ability to understand things.

 

Now there have actually been two in recent weeks, both echoing similar sentiments: Mandapanda's in this thread, and your's Lisa in another thread:

 

http://www.asd-forum.org.uk/forum/index.ph...st&p=254091

 

I am extremely uncomfortable with comments like this and disturbed by these sentiments Only a couple of comments, but as I say, in the last 5 years I have never come across any sentiments like this before on the forum.

 

Bid

Edited April 30, 2009 by bid

[wasuup]

madme-you said exactly what I sometimes feel. Although the people who usually respond to my posts are always the same people who take time to write often very long replies that do show a lot of thought and caring. I don't really let the fact that only the same few people (who are very helpful) respond to my posts stop me posting though as I think having a waffle on a forum is a good way of getting stuff off your chest but I do feel on the edge sometimes.

[lisac]

Hi Bid, sorry if I offend you. Some people sometimes reply abruptly/rudely/cant see both sides of debate/ due to autism or NT! As this is an ASD forum surely it is important to take it into consideration sometimes, maybe? x