news article

[bid]

I would please ask, that other people respect others decisions on how they raise their children including the use of medication. Its not an easy decision to make, but for some, it is felt there is no choice. This is perscription medication, not street drugs, its a choice, for some children its a life saver. I suggest the ones who are quick to judge do their own research on the benefits and the future of some children who are not medicated. Its not drug for compliance, contrary to opinion.

 

I agree, Darky <'>

 

My son was on meds from the age of 8 until he was 14, a decision which was not made lightly. And I am on anti-d's myself.

 

Take care <'>

 

Bid

Edited August 17, 2007 by bid

[Bagpuss]

I've just read the article, and was appalled by the headline. Overall I didn't have any major probs with what she had writtan, and could identify with certain parts of it. I didn't get the impression she was blaming AS or ADHD, or thought her son was monster. I took it that she was describing her life, and the impact her sons behaviour had. I liked the fact that she pointed out that AS is not mild autism. You've made some valid points Darky, and I don't think anyone should criticise a parent for choosing medication for their child. Until you are walking in that person's shoes, you cannot judge. I've found this thread really interesting, and it's been really good to read so many different opinions, and alot of the posts have really made me think. Thanks.

[Gardenia]

I too did not like the headline of the article, but I thought the article was a very honest account of the way the mother felt and how she coped - and I think he is much loved and she wanted the best for her boy. I don't think its ever taken lightly to give ones child meds - in fact she initially refused the meds and didn't give them to him until he was 9.

 

Some words seem to offend others whereas they don't seem to bother others. e.g. whilst I was growing up at home my father would raise the roof if we ever called anyone stupid and my mother wouldn't let us say a child was wicked. I think the word monster has offended a lot of people - although quite often I feel like I have two monsters and one of those is NT. Maybe the mother used that word because of the monstrous acts that her son is capable of doing.

 

In an ideal world it would be amazing if we all had the patiences of Job and understood our children and empathised but sometimes I as a parent cannot be strong and rational 24/7 and break down. I think we just have to read many of the posts on this forum to know how challenging, heartbreaking etc. it is living with a child with ASD and behavioural issues.

 

Regards

Gardenia

[Bard]

In an ideal world it would be amazing if we all had the patiences of Job and understood our children and empathised but sometimes I as a parent cannot be strong and rational 24/7 and break down. I think we just have to read many of the posts on this forum to know how challenging, heartbreaking etc. it is living with a child with ASD and behavioural issues.

 

Regards

Gardenia

 

I think, perhaps, that you have identified one of the key factors that separate the different opinions on this thread, all of which are valid.

Maybe it's a possibility that those of us seeing some positive aspects of the mother's responses may be those who have had to face that sort of behaviour on a daily basis for over a decade without the option of getting out of the situation. And coping with NT siblings, unhelpful family members, and jobs where your colleagues just don't understand why you have to parent completely differently to them.

I'm not attempting to blame, or say "you don't know unless you're parents' or invalidate anyone's opinions, it's just a small thought.

[bid]

I think, perhaps, that you have identified one of the key factors that separate the different opinions on this thread, all of which are valid.

Maybe it's a possibility that those of us seeing some positive aspects of the mother's responses may be those who have had to face that sort of behaviour on a daily basis for over a decade without the option of getting out of the situation. And coping with NT siblings, unhelpful family members, and jobs where your colleagues just don't understand why you have to parent completely differently to them.

I'm not attempting to blame, or say "you don't know unless you're parents' or invalidate anyone's opinions, it's just a small thought.

 

Well, I'm a parent and someone with AS and I fall into the 'unhappy with the article' camp...

 

Bard, you have just described my life until my DS went to a residesi special school for AS when he was 15 and finally got the specialist environment and support he had been denied for the 10 years he struggled in mainstream. I had a period when he was little when his two younger sibs were on an on-going risk-assesemnt by SS because of his 'challenging' behaviour, I have experienced all of the scenarios described in this article (only in our case it was a duvet cover rather than a coat), and he only got the specialist support he needed when he finally had a severe breakdown, seriously self-harmed and came out of school.

 

But, I have never seen him in the kind of terms this mother describes her son. I'm not perfect as a parent at all and I have shed plenty of tears, wanted to run away, been in utter despair, said and done things I regret, etc, etc. But I would certainly never write in such an emotively negative way about him or about autism. And my son also has co-morbids of ADHD, Dyspraxia and border-line Tourettes.

 

Bid

Edited August 18, 2007 by bid

[carrieq]

I am in the unhappy camp too. I know ds drives me mad but I could never refer to him in highly negative terms and have this in black and white for all, including him to see.

 

I suppose it is how you get on with life and if you view ASD etc as a negative thing then you will deal with it in that way. Even htough my ds has the co-morbids listed and others I just felt bettrayed by what she had written, not explaining this very well!

 

Carrie

[Mumble]

Maybe it's a possibility that those of us seeing some positive aspects of the mother's responses may be those who have had to face that sort of behaviour on a daily basis for over a decade without the option of getting out of the situation. And coping with NT siblings, unhelpful family members, and jobs where your colleagues just don't understand why you have to parent completely differently to them.

I'm not attempting to blame, or say "you don't know unless you're parents' or invalidate anyone's opinions, it's just a small thought.

Bard - I'm quite surprised by your response: of course we can't know what it is like being her and we can't know what it is like being the parent of an autistic child unless we are, however, one of my big gripes is that all autistic people are thought of as the same rather than seen for the individuals they really are. Shouldn't the same be said of the parents of these individuals? I may not know what her life is like but I sure as hell know what it is like to be on the recieving end of such language; to be told day in, day out what a horrendous, unlovable person you are. Sure it's hard for you having lost the life you hoped for but life isn't about everyone being the same and following the expected path - aren't you the one who told me about compromise? Other people may not understand which may lead to some of the problems you and this mother describe. However, these people, if we want them to understand, are not going to do so through such emotive writing - at worst (best?) it will make them avoid you (I'm using 'you' generically now, not you in the singular) and your (ditto) monster, at best (worst?) it will have them feeling sorry/pity for you and your autistic child - neither are very helpful situations and neither help to move understanding forwards.

 

I have never seen him in the kind of terms this mother describes her son. I'm not perfect as a parent at all and I have shed plenty of tears, wanted to run away, been in utter despair, said and done things I regret, etc, etc. But I would certainly never write in such an emotively negative way about him or about autism.

Thank you Bid <'>

[TheNeil]

OK, time to do some clearing up.

 

Darky: I wasn't criticising every parent for using prescription drugs on a child. I appreciate that in some cases they're essential, there are major moral decisions to make and that no parent makes decisions like this lightly. In the case of Jan Greenman though I felt that she seemed to view drugs as the be all and end all rather than trying to understand or actually help or understand Luke. I still stand by my opinion and understanding or her article that she has failed to grasp that her son wasn't 'bad', wasn't a monster and had no control over what he was doing. Rather than trying to understand or work with him I felt as though she was offered a magic pill that would 'fix' everything and she took it (albeit after a period of hesitation). I worry that rather than help Luke she's simply 'covered up' what and how he is...all in the name of making life easier for herself. Prescription drugs aren't necessarily bad - parents who prefer to use them rather than try to understand their child first are. Rest assured, I didn't mean to criticise or generalise parents as, as you say, every case is different - in Jan Greenman's case though I really do question her motives.

 

Bid: I know that there is strong evidence of a genetic link to ASD/ASCs but there is no hard and fast 'rule'. As someone who's part of the ASD/ASC community, I know this, understand it and would welcome the medical community accepting this line of investigation and actually coming up with a definitive 'reason'. I was approaching this though from the perspective of those people outside of the ASD/ASC community who, unaware of theories, evidence and hard empirical fact, turn to the likes of the medical world. And what does the medical world tell them? There's 'no known cause' and it 'just happens'. Given this information most people (outside of the ASD/ASC community) don't realise that it's anything but just 'random chance' that has 'blighted' (to use Jan Greenman's terms) their child's life (to clarify, I don't consider it a blight). In Jan Greenman's case she either won't accept the 'strong evidence' or is unaware of it and is trying desperately hard to find someone to 'blame' (rather than just accepting what's happened and dealing with it - however that 'dealing with it' might be). If the medical world could come up with a hard and fast reason as to why some people fall onto the spectrum and that it was all attributable to X, Y or Z (something like, say, the MMR jab)(just look how quickly the fingers were (and still are) pointed) then society (or rather, society outside of the ASD/ASC community), in general, would breathe a huge sigh of relief - "That's ASD/ASCs dealt with, it's all down to X, Y or Z. What's the next mystery to solve?". People could then 'blame' (if they felt the need to), for example, the doctor who gave the MMR jab, the release of uranium into the Earth's atmosphere, or Kenny Ball and His Jazzmen (or whatever ludicrous 'reason' they needed). At the moment we don't fall into a neat little box though and this seems to drive a lot of people to the point of madness. To them (people like Jan Greenman that is) I just say, accept it, accept us and spend your time doing something productive rather than 'blaming' things, events and people.

 

Mumble: Keep fighting - it's what we gotta to do survive (and you're doing a great job)(not that I'm some sort of expert)

 

Emily: What do you fancy for lunch? <'>

[Mumble]

Kenny Ball and His Jazzmen

I knew it!!!

 

Mumble: Keep fighting - it's what we gotta to do survive (and you're doing a great job)(not that I'm some sort of expert)

I'm trying - I like to be trying Makes people relaise they can't just suck me up the hoover and be done with me - I'll clog up the works and cause them even more problems (yes that is possible) if they try

 

What do you fancy for lunch? <'>

Smoked salmon and cream cheese in sunflower and honey bread (no butter), cut in half but diagonally at an angle of 45 degrees, a packet of parsnip crisps and a large bar of dairy milk fruit and nut please. .... What do you mean you weren't asking me? :tearful:

[badonkadonk]

I think it would be a shame if this thread turned into an argument about whether to use medicine in helping your child or not based on a throwaway comment by Neil (I assume this is what you are all responding to). I can't speak for him and tell you exactly what he meant, I don't know, he's downstairs hoovering at the moment so I can't ask him either But I can say that I'm fairly sure he didn't mean that to use prescription medicine to help lessen your child's negative behaviour instantly makes you a bad person.

 

Having just spoken to Neil (he's now hoovering the bedroom hehehehe) I understand what he meant, and his issue was that, other than seeking to place Luke in a specialist school, using medicine to improve Luke's behaviour seems to be the only other major thing she has done and instead of just using medication she should have perhaps looked at understanding and coping mechanisms aswell (mainly for Aspergers). She might well have done these things but that doesn't come across in the article, especially in the language that she uses. I know some of the parents and a couple of other people who are ASD on this forum do feel like their children or themselves have 'missed out' on the chance for a happier, less problematic, childhood/adulthood by not being NT and fair enough, I don't want to get into all that. But even for people who do believe this I find it difficult to believe that they would agree that words like 'blighted' are appropriate ways in which to describe their children or themselves.

 

I think Neil is going to post and clarify what he meant so hopefully this should clear some things up. I personally don't have a problem with prescriptive medication, I've used anti-depressants in the past and while they didn't work for me I wouldn't begrudge anyone else who used them because if it helps then fair enough. My own personal take on the situation, especially as the ADs didn't work for me, is that ADs should be used in conjunction with something else. Talking to a psychologist, CBT or just the person who is taking the tablets looking at their life and assesing why they are needing to take the tablets in the first place. When we feel sad enough to seek help from others it makes sense that we need to make changes, even if the only change we make is to make ourselves feel better. Often ADs provide the boost that people need to get into a positive head space/make positive changes around them and that doesn't bother me in the slightest. If I did have any concerns about ADs it would be if they became a long term source of help (I'm talking 1/2 years + not weeks) because then I probably wouldn't be able to help but wonder if the real issues were being addressed. My parents investigated ADHD as a possibility for me when I was a child because at times I used to become incredibly hyper and animated, I can say for certain that if I had been at risk to others and myself and they found that other strategies hadn't worked by themselves then they would have looked into medication for me. As it turns out it wasn't ADHD, just that me and citric substances don't mix, the doctors thought it was E-numbers initially but I'm the same with normal orange juice. I'm not hyper as much now, it just makes me poorly so I avoid juice and oranges, lemons etc etc where possible.

 

I'm keen for the assumption not to be made that us Aspies on the board are parent bashers. I can't speak for everyone but I know I'm not a parent hater and if anything I'm always saying how kick-ass I think it is that you guys care enough to come onto forums like this and at least find out more information/consider other people's opinions. Too many people worry about being bad parents so much that it affects their ability to parent effectively. I think most people know that there isn't a definite manual for this kind of thing, especially when your child doesn't turn out to be the stereotypical child and I do understand the whole loss/mourning thing. I sometimes yearn for a social life, I think 'I'm missing out, look at all the fun I could be having' because this is what society is telling me I should be doing and then I go out and try to do these things and I absolutely hate it, tell myself off for being such a big silly and go back to my jigsaw puzzles and nights in watching DVDs because that is what I love best.

 

I also understand the whole 'but sometimes my child is a monster' thing and I don't think that it is wrong to describe your children in this way in those kind of circumstances. But the article wasn't this woman saying 'sometimes Luke can be a right little sh*t, as all children can be' it was 'my son is a monster with Autism'. Autistic or not I bet he can be a pain at times, but just because he is Autistic doesn't make him a monster, especially as his negative behaviours are not entirely attributable to Autism (given the ADHD thing), are probably as a result of Luke not understanding who he is properly (which is to be somewhat expected given that he is a teenager with raging hormones and a differently wired up brain to most, though it certainly isn't helped by his mother calling him blighted) and yes, sometimes, as a result of him being Autistic (if he sensory overloaded/got overly frustrated and didn't know how to channel his frustrations into less explosive behaviour) but with everything else going on we can hardly blame Luke and call him a monster! Can we? Is it really that bad to think negatively about the mother in this respect? I can understand how sometimes there might be a divide because the parents are more likely to sympathise with the parent while the Aspies/Auties are more likely to feel frustrated and upset for person who is ASD (and Bid to feel like she is being torn in half by belonging to both camps) but I would never defend the ASD person 100% and be blinded in my opinion and I would hate for someone to think for a second this would be true. I do consider both sides of the story, I do understand how you as parents must feel (even though I'm not one myself) and I do think that this woman is not all that bad because at least she is trying to raise awareness about Aspergers not being mild Autism (and I acknowledged this in my original post) but her descriptions of her son as a monster and blighted are to me offensive enough for me to have an opinion about and criticise her for.

 

I know no one has criticised me personally, so I'm kinda defending myself for no reason but I just desperately don't want the parents on here to think that some of us are anti-parents because it isn't true. Yes we are often critical of media articles, and yes this often includes criticising the parents but that's because most articles are negative/misrepresentative about Autism and most articles include the opinions of parents whose children are ASD because we who are ASD seemingly don't exist to the media, especially us adults.

 

One last thing, I know I'm rambling as usual, I'm not always Little Miss Positive and I too can recognise that being AS isn't always daisys and roses. I would never change who I am (though would change how I am perceived by society if I could) but sometimes I get frustrated with myself and use negative language about myself too. The other day when I was visiting my parents we were loading mine and Neil's cars up with things to take home (namely trying to figure out how on earth we were going to fit a table and four chairs into two small hatchbacks after an impulse buy) and I ended up having to go inside the house in floods of tears. Why? Because some kids were playing down the end of the street and were shouting as they had fun. Nothing against the kids and I would never ask them to stop but it hurt my ears so bad and made me so irritable that I ended up sobbing in the kitchen unable to employ any coping mechanisms to make me react less. Sometimes I just can't do anything. At these times I get angry at myself and wish my ears weren't so bad, I say to others 'I'm so useless, I hate my ears' and have myself a pity party. When this happened a few days ago my Mum, Dad and Neil were the ones who were encouraging me to go inside (I wanted to fight it and try to not let it bother me) and they were the ones who gave me a hug and told me I wasn't useless and that neither I, or the kids, could help the situation. Turn the clock back five years and my dad would have probably called me stupid and accuse me of over-reacting. I would have not known why I was getting irritable and would have probably have started getting angry with people and snapping at them. My negative behaviour would have escalated and my dad would have probably called me a monster three hundred times over. The difference is that now I am diagnosed with AS and now I, and my parents, have a (I think) good understanding of AS. They recognise that my upset isn't intentional, they don't take it personally if I do become irritable and upset and they instead encourage me to do what I need to do to make the situation positive again. This is why I am frustrated by the woman in the article because she chooses to call her son blighted rather than look past the negative behaviour and see where it is coming from.

 

Hope this makes a bit of sense, I'm not sure it does so apologies in advance if I'm off offending peeps as usual

 

Emily

xxx

 

See, I ramble on for so long Neil has finished the hoovering and posted himself before I've even finished

[darky]

Thanks for those explanations, I can be quick to defend medication as I have seen how it has transformed my daughters life, she is very happy and doing well I could not in all honesty give it to her if it was any other way.

 

It shows just how different people view the article because I read it different. I read it that, she held off medication for a number of years before she tried it for her son, and it was only at the point she felt that she could not keep her son safe, that she trialed it. She said it did not work for her son, he is no longer on medication. I think she was hoping for a miracle cure, I think as parents that is something deep down we all hope for, and I think her upset at the medication not working for her son, was the realisation it was not what she had hoped for, and this was not a problem cured by the use of a tablet.

 

The grieving us parents feel, is society and just wanting to do what everyone else does. I could let life consume me like that, and I did once to the point of almost killing myself. The grieving for what seems to be a loss, to wanting to be niave with not a care in the world like other parents do, not having to watch their children every second, allowing a child much younger to walk down the road and stop waiting for you at the kerb, scooting down the road wearing flipflops, for them to even be able to wear flip flops and pretty girls sandles!! that you would be able to attend parties, family functions and enjoy days out. To buying your child a gift to treasure, to being able to read a book with them, just to name a few obscure things.

 

I used to feel intense anger at people for moaning about silly things, but I realised actually I was jelous of them at the time because I wished I only had silly things to moan about, but now I actually feel so honoured that I am not one of them, that my eyes are open and I experience so much good in a day, and I can honestly say hand on heart I am so proud of every single one of my childrens achievements and I take NOTHING for granted. I think I am one of the most lucky blessed parents in the world, they grow up so quick, I cannot imagine turning round in old age with regrets and guilt that my children grew up so quick and I didnt apprieciate every single day of it!!

 

Its not until as a parent you accept that, and your child is not like that and does it actually matter? Thats when it becomes easier and you learn to adapt to a world that suits THEM and are fiercely protective of anyone, such as school who wants to change them. The world can accept her, and I will not expect any one of my children to be anything other than what they can be, and what they want to be.

 

I had real issues myself, as a child I always felt mis-understood and the world was a confusing place. I had moulded into what some call normality, until it nearly killed me. It was not until about 2 yrs ago I searched my hospital records and found all the symptoms of AS, the anxiety, the lashing out to loud noises, being obsessive and needing routine, spinning objects etc etc, that I realised me and mine are not too different. Its great to finally understand and that has all given me the key to understanding my children.

[Suze]

This article would have been much better if Luke had also had the oppurtunity to explain how he felt, about his dx, schooling, how he copes etc.To hear his views would have made a much more balanced article. ....................I saw this article in the paper and immeadiately hated the title/headline.!!!! ............................it gives the complete wrong impression!

[bid]

Bid: I know that there is strong evidence of a genetic link to ASD/ASCs but there is no hard and fast 'rule'. As someone who's part of the ASD/ASC community, I know this, understand it and would welcome the medical community accepting this line of investigation and actually coming up with a definitive 'reason'. I was approaching this though from the perspective of those people outside of the ASD/ASC community who, unaware of theories, evidence and hard empirical fact, turn to the likes of the medical world. And what does the medical world tell them? There's 'no known cause' and it 'just happens'. Given this information most people (outside of the ASD/ASC community) don't realise that it's anything but just 'random chance' that has 'blighted' (to use Jan Greenman's terms) their child's life (to clarify, I don't consider it a blight). In Jan Greenman's case she either won't accept the 'strong evidence' or is unaware of it and is trying desperately hard to find someone to 'blame' (rather than just accepting what's happened and dealing with it - however that 'dealing with it' might be). If the medical world could come up with a hard and fast reason as to why some people fall onto the spectrum and that it was all attributable to X, Y or Z (something like, say, the MMR jab)(just look how quickly the fingers were (and still are) pointed) then society (or rather, society outside of the ASD/ASC community), in general, would breathe a huge sigh of relief - "That's ASD/ASCs dealt with, it's all down to X, Y or Z. What's the next mystery to solve?". People could then 'blame' (if they felt the need to), for example, the doctor who gave the MMR jab, the release of uranium into the Earth's atmosphere, or Kenny Ball and His Jazzmen (or whatever ludicrous 'reason' they needed). At the moment we don't fall into a neat little box though and this seems to drive a lot of people to the point of madness. To them (people like Jan Greenman that is) I just say, accept it, accept us and spend your time doing something productive rather than 'blaming' things, events and people.

 

Just to clarify, the article does say that he developed autism and ADHD as a result of encephalitis...

 

Which brings us neatly back to the discussion Mumble and I had about 'genetic' autism and 'acquired' autism I wonder if the mother would have had a different attitude if her son had 'genetic' autism, rather than a catastrophic cerebral trauma that she can pinpoint as 'damaging' her son?

 

Interesting thread, though, with lots of different points of view

 

Bid

[darky]

I was always led to believe, and I know it is certainly true of ADHD, that they can only be diagnosed when all other possibilites have been looked at. I mean, in the diagnostic criteria of ADHD, you cannot have ADHD if there is a pervasive development disorder as the symptoms then become best described under the PDD. So if the lad had encaphalitis then that would be the diagnosis not a PDD or ADHD?

 

When my daughter was diagnosed, even though she scored very high on all the sub scales of ADHD, her consultant said he could not "officially" diagnose her with ADHD as the symptoms subsumed in the over riding diagnosis of Atypical Autism or PDD-NOS.

 

He has included it into her diagnosis along with Dyspraxia for the LEA's benefit for when she was statemented because they would not accept it as part of the statement and the support for it.

[bid]

Not sure, Darky

 

My DS was diagnosed 11 years ago at a specialist diagnostic centre for paediatric disabilities.

 

Back then he was given AS as his primary dx, and associated with that ADHD and Dyspraxia as co-morbids. The consultant said that both the ADHD and Dyspraxia were severe enough to stand as a dx on their own.

 

Maybe the approach has changed now as things have progressed with further research?

 

Bid

[Mumble]

I was always led to believe, and I know it is certainly true of ADHD, that they can only be diagnosed when all other possibilites have been looked at. I mean, in the diagnostic criteria of ADHD, you cannot have ADHD if there is a pervasive development disorder as the symptoms then become best described under the PDD. So if the lad had encaphalitis then that would be the diagnosis not a PDD or ADHD?

This is a really interesting discussion. Maybe it would be better for Luke to be described as having encephalitis leading to acquired autistic like behaviours?

 

I've always wondered - for instance my diagnosis is AS comorbid with dyspraxia and alexithymia. Both 'appear' to such an extent in my behaviours as needing to be part of what explains me - AS doesn't do it alone. Now the literature suggests that a very high proportion (I've read as high as 90%) of AS individuals are overly clumsy. What I don't know then is what do I have extra to AS to warrant the need for further description? The way I work with this is to think about extremes and exteme extremes. I do think this is something that there is a lack of agreement on amongst the professionals and perhaps that's the problem. I suppose as well, AS isn't a neat little package - you are AS you do these things, have these difficulties etc. Everyone is different. So we would expect different presentations in people. The need for additional labelling perhaps comes in when 'different' is too extreme in someone to be explained by the variation in the condition. And of course it helps others to understand - for some reason, dyspraxia isn't nearly as misunderstood as AS (though don't get me started on trying to explain alexithymia - I don't understand the textbook myself!!).

[Gardenia]

....................I saw this article in the paper and immeadiately hated the title/headline.!!!! ............................it gives the complete wrong impression!

 

Thats exactly what I thought. My gripe is with the headline and not the mother.

 

I don't want to be judgemental about the mothers lifestyle these were her feelings and sentiments, having not read the book yet the mother may well have wrote a lot of the positive, rewarding times bringing up a child with SEN.

 

Regards

Gardenia