Change in behaviour

[JeanneA]

Hi my son Glen (14) ASD, is due to go back to School next Monday. I am personally dreading it. Since early November Glen's behaviour has changed, he has been constantly wetting at School, stripping off, exposing himself then just before the Christmas holiday started hitting out at Staff. Glen occasionally does these things at home but nothing like what he does at School. Glen clearly doesn't want to go to School even now, the 2nd week into the holiday he keeps saying every day 'School tomorrow' which means he doesn't want to go and needs to be reassured that it isn't School. Glen has very poor understanding and cannot tell you how he feels.

 

Various people are now getting involved, the E.P. is coming into see Glen on January 8th, I am also going to speak to the E.P., Outreach (Children's disability team) are also going to see Glen at School, plus a specialst doctor.

 

I just wondered if anyone else has experienced these type of behaviours in their children which have come on suddenly. The School say there has been no changes at School, they can't think of any reason why Glen is behaving the way he is.

 

If anyone can shed any light I would be extremely grateful.

[cmuir]

Hi

 

My son is in mainstream school and receives a high level of support (he has AS). School have maintained that up until the summer, he's behaved well, despite the fact it's a very different story at home. However, since he's moved into P3, where he has a new teacher, different classroom, bigger playground and increased/different workload, he's punched his learning assistant, tried to abscond, swears, and is generally very disruptive and unpredictable. It seems that he's presenting in the same manner both at home and at school now (though hubby and I have always have the brunt of it!). I'm certain that there's a combination of things going on - he's having trouble coping with all these changes (academically as well as environmental changes). In addition, he and his peers are getting older, it's now becoming blatantly obvious he's different and it's hard for him to understand.

 

I'm afraid I can't offer any advice - just wanted to let you know that sudden changes in behaviour aren't unusual and although it's not always obvious why, there's always a reason not matter how trivial it might seem to staff. The fact that your son is telling he doesn't want to go to school is in indication that these behaviours are triggered as a result of something at school. The run up to the festive period might hae been enough to cause things to escalate.

 

Glad everyone's meeting up to discuss this.

 

Best wishes.

 

Caroline.

Edited December 30, 2008 by cmuir

[JsMum]

 

 

Hi, Just because nothing at school hasnt nessasarily changed or they suspect it is nothing to do with them, doesnt mean it isnt, can he communicate with you if there was, it could be a number of issues, from bullying from other children or even a teacher that doesnt address his behaviour sympathetically.

 

Wetting in our experience has always been under stress and high anxiety, unless there is already an identified medical problem with the water works.

 

Anxiety causes the bladder to empty its to do with the flight and fight trigger, so this is common, I would ensure also that the staff have been allowing him to go to the toilet at school, it may be once in a lesson he is told to wait until the break and he cant wait that long, especially if it is anxiety related.

 

The stripping and exposure again a reaction to anxiety and stress especially if this has increased suddenly.

 

It sounds like the right proffessonals are listening and coming to school to observe him, could any of them observe him within your home enviroement too, especially as he displaying the behaviours now.

 

I would keep a diary and continue to monitor how his behaviour develops, if anything concerns you in the meantime contact the duty children and adolesent mental health team for an emergency appointment.

 

Things that come to my mind, is has there been any new staff, was the routines and structure different with the christmas changes, is he able to communicate his worries, and is the school a mainstream or specialist provision.

 

My son has been quite sensitive over the holiday getting easily upset, Im aware pubity can cause disruption to our children also and understanding the changes to their bodies ect... the stripping off, exposure thing may be to do with him expressing this, just a slight thought, but understand your sons is more likely to do with other anxieties.

 

I hope that things can be resolved soon and some answers.

 

JsMum.

 

 

 

 

 

[Cat]

 

Are you aware that it is perfectly legal for you to home educate your son? We had two different teams of 'experts' playing in our game and they generally made things much worse because the one thing that my son could not cope with was the one thing they are agreed he needed - school. After taking our son out of school we saw a HUGE change in his behaviour. His levels of anxiety and aggression, which had become a big issue, rapidly decreased.

 

The teen years can be very difficult for our children. It becomes much more obvious that they are different and some find that very hard to handle even if they do not want to be like everyone else. Home Education does not mean that you are giving into your autistic child it means that you are tuning into them and trying to do what is right for them. There are now 1000.s of us - and I do mean 1000's - and we all agree that it was the best thing and the right thing for our children. We also agree that communication skills and socalisation skills can improve greatly when the preassure of school is removed.

 

Cat

 

 

 

 

 

[baddad]

Hi Jeanne -

 

It sounds like anxiety about school is part of this but it doesn't necessarily mean things have changed there in a generally negative way. It could be more that things happening there which were previously not a problem have started to be problematic for your son, or that changes in staffing/timetables etc are having a personal impact. Have there been any changes in staffing or lessons that could be adding stress, or maybe even changes occuring in the lead up to Christmas which he doesn't realise are 'temporary' (things like decorations/school plays etc)?

Given his age, I think there's a very good chance that puberty could be a factor, either directly (responses to his body changing/hormones etc) or indirectly (embarrassment over those changes or other peoples responses to those changes or to impulses arising from the changes). I think the incontinence/stripping off and aggression all point to these kinds of issues, but I'm no expert. Hopefully the ed psych and other professionals now being consulted will be able to come up with some explanations and helpful strategies.

 

Cat - with the best will in the world your jumping in to bang the drum for home ed does seem a bit extreme... sorry, but it does. I find that particularly worrying from someone who has a significant role within a lobby group like AIM who are pushing for educational reform, because it implies a strong personal bias that would be unhelpful in that wider context. I'm not saying that the 1000's you mention are wrong - but they do have a huge personal investment in seeing themselves as 'right', and that's hardly an unbiased opinion. I also find the wording here quite inflamatory:

Home Education does not mean that you are giving into your autistic child it means that you are tuning into them and trying to do what is right for them

 

I'm sure every parent using the forum is trying to do what's right for their child, and a decision like Home Ed doesn't imply any greater degree of 'tuning in' than any other decision. I think the proof of the pudding can only be in the eating and the full effects of an educational strategy can only be measured by statistics after the educational career has finished. If there is strong evidence that home educated autistic people go on to lead more independent, fulfilled and 'happier' lives, that's great, but personally I think that there are positives and negatives to all educational strategies, whether mainstream, specialised or home provision.

 

I would agree, though, that the teenage years are particularly difficult, but would add that this is pretty much universal and not an 'autistic' phenomena. I think that's an important factor, because if people respond as though it is a purely autistic phenomena they are likely to draw the wrong conclusions. Our educational system is failing millions of children - not just autistic children.

 

 

L&P

 

BD

 

[Cat]

Cat - with the best will in the world your jumping in to bang the drum for home ed does seem a bit extreme... sorry, but it does. I find that particularly worrying from someone who has a significant role within a lobby group like AIM who are pushing for educational reform, because it implies a strong personal bias that would be unhelpful in that wider context. I'm not saying that the 1000's you mention are wrong - but they do have a huge personal investment in seeing themselves as 'right', and that's hardly an unbiased opinion. I also find the wording here quite inflamatory:

 

You remind me very much of an LSA at my sons old school who tried to tell me that because I was COG I had no right to go into school and bang a drum for my own son. If you are worried about what AIM does then feel free to find someone to speak to about it. Just because 'I' chose to home ed does not mean that it has to be everyone's choice. AIM invests heavily in attempting to get a better deal for children with autism. I make no secret that 'I' myself home educate. Everyone we speak to, be they at Government or LA level is aware that I home ed. I am only one part of AIM even if I am the co-founder. I have never attended a metting yet where I bang my own personal drum and because I am not fighting for my own children then it is actually easier to bang the drum as loud as you can because I am not in any way personally emotionally involved. It is wrong to assume that I am unable to detach myself from my own personal situation to fight for other people. I did however make this post as me Cat but I can not pretend that I never mention AIM because have often mentioned AIM.

 

I think that you find everything that I post here inflamatory. I am one of the few posters here who will now openly disagree with you. Speaking of always seeing themselves as being right the words pot,kettle and black springs to mind. I am more than a tad fed up myself with your line of attack and will not be responding to any of your posts in future.

 

Cat

Edited December 30, 2008 by Cat

[baddad]

Hi cat - no I don't find everything you post inflamatory, and I think it's perfectly reasonable for you to talk about home ed and AIM in context, and in principle I agree with many of the points you make. My problem with your intial post in this thread was that it didn't address the concerns raised at all but just usurped the thread as a platform for the promotion of home ed.

As for you being one of the few posters who will openly disagree with me I get shot down in flames every time I offer an alternative view that doesn't make our children (or some adults) 'victims' - either of their autism, or the 'system' which has become the focus of blame for pretty much every problem they encounter in life (be it school, social services, LEA's, society, government, 'professionals' etc etc). The problems our children encounter are real, and the solutions are complex, but increasingly there seems to be a polarisation of perspectives that get in the way of effective dialogue to find those solutions. Making monsters of the very people we/they rely on for help and support can't be a better option than open dialogue, but it does seem to be what's increasingly happening.

In this thread, I saw that Jeanne A's son was having major problems in school and offered some perspectives that I hoped might help. As far as always thinking I'm right, I didn't offer any solutions or explanations for why these things were happening, I just suggested some possibilities based on the factors that looked like the most likely triggers to me: puberty and changes in routine. These do seem far more likely to me than a sudden and dramatic failure or crisis in the school placement that was working prior to November.

 

Jeanne/all - sorry for somewhat derailing this thread - it wasn't my intention and i actually logged on to delete the second part of my original post because I realised I had done so. I didn't want to do that after seeing cats response because to have done so would have created confusion...

 

L&P

 

BD

[KarenT]

In this thread, I saw that Jeanne A's son was having major problems in school and offered some perspectives that I hoped might help.

 

Actually, my interpretation was that Cat did just the same. She spoke of a solution that had worked for her son, which works for many, and is worth considering. I believe this forum is about sharing ideas and experiences and as far as I can see that's what Cat has done here. I didn't read her reply as 'banging a drum', just saying "This is what worked for my family, have you considered it in your case?" To be honest, I don't see that as any different to giving advice on (eg) planning, organisation and time-management for ASD children, where the usual line of approach is structure and visual timetables, recommended and successful for most but there are a few kids who completely freak with the perceived pressure of having to do things at a certain time and for a certain duration. When someone posts with a problem they're having difficulty with, it's usual for others to offer their own experiences for the OP to draw on, weigh up and make their own judgements as to whether they're worth trying. That's what support is about, I think.

 

IMO, It's worth considering that school sometimes just doesn't work however hard you try and however much you work with the authorities. In cases like Jeanne's it's sensible to look at what changes at school might have triggered her son's behaviour but realistically you may never know. Many schools, possibly most of them, have such a lack of autism awareness that they wouldn't know the sort of things that might set off a change in behaviour, so they may see nothing to report to the parents or tackle themselves. You can't solve a problem if you don't know it exists so they'll continue if nobody is doing anything to fix them.

 

I took my son out of school just before October half term and my only regret is that I didn't do it years ago. I've watched him suffer for five years in mainstream school, despite repeated attempts to work proactively with two schools who have neglected his needs and failed him dismally. He's also been denied a statutory assessment, despite a one day exclusion for violent behaviour and an inability to get through the day without lashing out at peers and teachers, and the Head strongly advising me to get him on medication. As parents we've spent that time spitting in the wind, working our backsides off to teach J social skills that the schools have undone with their lack of support. Although I totally agree that the system SHOULD work for ASD children I have had to accept that sometimes it doesn't, no matter how hard we try and how supportive the professionals involved might be. I could have kept my son in school and fought and fought for more support, but there was no guarantee that he'd get it and in the meantime he would have continued to suffer and I couldn't allow that to happen. His mental health and long-term future were at serious risk. Yet in the two months since he's been out of school he has been a changed child - happy, calm and relaxed, more cooperative, and willing and eager to work on his problems. No meltdowns, very little anger, motivated.

 

I accept that this is just one family's perspective, but surely a forum such as this should welcome ALL perspectives that could bring positive outcomes to children with ASDs. I can personally see nothing wrong with promoting home education as a viable option when a child is miserable and failing at school. All angles are worth consideration and IMO Cat is perfectly right to bring it to Jeanne's attention as a legal and appropriate alternative that she may not have already considered.

 

Karen

x

 

 

[teachermum1]

I'm not just saying this because of what I do, but I think that Baddad's posts are always very considered and very measured and considered rather than knee-jerk reactions.

 

For me, home-ed would never be an option because I want J to be part of mainstream society and so he needs to learn to socialise with others. I would far rather put my energy into making school work for him than withdraw him. I guess this links also to other posts of BD's that I've seen, about schools adjusting to autistic children or vice versa. I feel that schools need to learn to make far more adjustments, particularly in terms of their attitudes (and my colleagues are as guilty of this as in any school, to be honest) BUT the learning experience for children with autism must be about being taught to follow the rules of society too, if they are to live in it as adults where the rules will apply. For my son, that learning is more important than his academic learning. So I think schools have a lot to offer if you take that perspective that the real learning is about being with other people.

 

J has a full time statement and yet his school are still finding it hard to cope. I will continue to expect them to make adjustments for him and to remember that much of his very difficult behaviour is because of his autism BUT he can often make good choices and doesn't. I see it at home - sometimes, he just wants his own way and has a kiddy tantrum, not a meltdown, to get his own way, and he is punished for that. So I'll support at school if they punish him for just being defiant and wanting his own way, because he does have to learn that life isn't all about getting your own way! Ditto with the violence, which is much less under his control when happening during meltdown, BUT he has to learn that he can't do it or he'll end up in prison as an adult.

 

I think Home Ed has to be an option for some children, but schools also have to be forced to be more inclusive so that children get to live in the real world with their peers and aren't forced into isolated, artificial education. People shouldn't be forced to home ed because schools can't be bothered to be inclusive.

 

Jeanne, sorry, have gone off on one a bit. One thing I was wondering is if you could get your son to rate various things thumbs up or thumbs down - like various staff, kids, activities, times of day, rooms etc. and see which are his thumbs down things to try to get to the bottom of what's causing it. The other thing would be to get staff at the school to note down exacctly what had been happening for the 30 minutes prior to any of these behaviours to try to identify a trigger. Good luck and hope things improve.

[baddad]

Actually, my interpretation was that Cat did just the same. She spoke of a solution that had worked for her son, which works for many, and is worth considering. I believe this forum is about sharing ideas and experiences and as far as I can see that's what Cat has done here. I didn't read her reply as 'banging a drum', just saying "This is what worked for my family, have you considered it in your case?"

 

 

Hi karen/all - Just to clarify briefly, I haven't got any beef with home ed and I'm sure that it's a solution that can work where other's fail. If cat's post had said 'This is what worked for my family, have you considered it in your case?' I wouldn't have commented on it, but (to me) it didn't ...

The comment 'two teams of 'experts' playing in our game' isn't a particularly balanced view and the rest of the post considered no other explanation for the behaviours other than that the child couldn't 'cope' with school and that the education system was to blame for this (cat didn't state this, I hasten to add in case of misunderstanding, but certainly that's what's suggested by the overall tone and scope of the post). I hope that clarifies my views on home ed and my concerns about cats post.

If I post anything else in this thread I hope to keep it on topic; offering perspectives on the crisis Jeanne's son is facing in school rather than the wider (and as far as I can tell unrelated issue) of home-ed, but I'll be happy to contribute to a thread on that if someone wants to start one.

 

L&P

 

BD

 

 

 

[cmuir]

Hi

 

Meant to add in my earlier post that social stories can be helpful when trying to tackle challenging topics, particularly when it comes to people that are visual thinkers. Your son is at a difficult age and stripping off must be difficult to deal with - I wonder if social stories may help. Carol Gray's website:

 

http://www.thegraycenter.org

 

is particularly helpful and I've bought one of her books which I would to be helpful.

 

A Social Story describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. The goal of a Social Story is to share accurate social information in a patient and reassuring manner that is easily understood by its audience. Half of all Social Stories developed should affirm something that an individual does well. Although the goal of a Story should never be to change the individual?s behavior, that individual?s improved understanding of events and expectations may lead to more effective responses.

 

I discovered that social stories needn't be complicated - I draw a cartoon comic type format with little stick people (shameful - considering I'm a graphic designer!) and that works really well for my son.

 

Regards

 

Caroline.

[JeanneA]

Thanks so much for all your comments they are much appreciated. Glen attends a Special School and has done for the past 7 years. He has very poor understanding and communication skills he is not able to tell me if something is wrong and is not even able to do a thumbs up/down I'm afraid.

 

I also think that Glen is at a difficult age going through puberty etc. which adds to the problems.

 

I really hope that with all the various people getting involved something will help. It was getting to the stage before Christmas when I thought that the School would ask me to keep Glen at home because of Glen's aggression. I am dreading taking Glen to School on Monday, I just know he will be exactly the same as he was before Christmas.

 

Jeanne

[JsMum]

Thanks so much for all your comments they are much appreciated. Glen attends a Special School and has done for the past 7 years. He has very poor understanding and communication skills he is not able to tell me if something is wrong and is not even able to do a thumbs up/down I'm afraid.

 

I also think that Glen is at a difficult age going through puberty etc. which adds to the problems.

 

I really hope that with all the various people getting involved something will help. It was getting to the stage before Christmas when I thought that the School would ask me to keep Glen at home because of Glen's aggression. I am dreading taking Glen to School on Monday, I just know he will be exactly the same as he was before Christmas.

 

Jeanne

 

 

What about not sending him back straight away and arrange a meeting with the proffessionals that are involved, especially if the school are considering sending him home if his behaviour is aggressive, its highly likely it will be anyway, then when he is at home you have to deal with his behaviour alone.

 

If they do send him home then how can they observe him, a slow transition with everyone in the picture has to be better than acting after the crisis has happened.

 

JsMum

 

[coolblue]

For me, home-ed would never be an option because I want J to be part of mainstream society and so he needs to learn to socialise with others. I would far rather put my energy into making school work for him than withdraw him. I guess this links also to other posts of BD's that I've seen, about schools adjusting to autistic children or vice versa. I feel that schools need to learn to make far more adjustments, particularly in terms of their attitudes (and my colleagues are as guilty of this as in any school, to be honest) BUT the learning experience for children with autism must be about being taught to follow the rules of society too, if they are to live in it as adults where the rules will apply. For my son, that learning is more important than his academic learning. So I think schools have a lot to offer if you take that perspective that the real learning is about being with other people.

 

That would be fair comment, teachermum, IF, on balance, a child with autism was learning to follow the 'rules of society' in school. Unfortunately, for my son, that wasn't what was happening. A couple of observations:

 

1) schools are nothing like the environment a child is likely to enter as an adult. The only current work environment I can think of which is similar to that of school is a call-centre or large open-plan office, neither of which someone with autism is likely to choose to work in. I think schools forget this, because teachers, by definition, (I used to teach in the primary sector) are often not very familiar with other workplaces, and it's easy to assume that the child's future work environment will be like the teachers' work environment. In my experience the workplace is much generally much smaller-scale, much more negotiable and adaptive and much more supportive than school.

 

2) schools are full of children. By definition, children do not behave like adults. They are still learning these skills and often get them wrong. The main lesson my son learned about socialisation at school (aged 8) was this (in his words); "I was very kind to the other children and they kept treating me like a mouthful of dirt." They did. He had the scars and bruises to prove it.

 

 

J has a full time statement and yet his school are still finding it hard to cope. I will continue to expect them to make adjustments for him and to remember that much of his very difficult behaviour is because of his autism BUT he can often make good choices and doesn't. I see it at home - sometimes, he just wants his own way and has a kiddy tantrum, not a meltdown, to get his own way, and he is punished for that. So I'll support at school if they punish him for just being defiant and wanting his own way, because he does have to learn that life isn't all about getting your own way! Ditto with the violence, which is much less under his control when happening during meltdown, BUT he has to learn that he can't do it or he'll end up in prison as an adult.

 

Well done for getting your son a statement. We started the statementing process twice, but it was never completed. Massive under-resourcing led to unbelievable delays in the evidence-gathering phase. My expectations for the school to 'make adjustments' were ignored, as were those of the learning support advisory teacher. By the time we had reached the conclusion that the school was unable (or unwilling) to support our son appropriately, he was in such a mess from the lack of appropriate support and the bullying that we had to remove him from school for his own safety. We could have kept him at school and 'forced the school to be more inclusive' by kicking up a bigger fuss, but weren't prepared to risk our son's well-being in the process.

 

I think you should also be thankful that your son responds to punishment. Many children with autism don't. There are issues with the dopamine pathways which mediate reward and punishment and some children simply don't respond to sanctions - or rewards, for that matter. It's significant that some autism-specialist schools have sanction-free regimes.

 

I think Home Ed has to be an option for some children, but schools also have to be forced to be more inclusive so that children get to live in the real world with their peers and aren't forced into isolated, artificial education. People shouldn't be forced to home ed because schools can't be bothered to be inclusive.

 

No they shouldn't. But some of them have no option. Our local Parent Partnership Service recently called a meeting with the LA because they were concerned about the number of parents who were taking their SEN children out of school because of poor support. I was invited to the meeting as a token parent! The LA have just built a state-of-the-art special school and argue that there is no way they can build a similar school for autistic children - the area of support most lacking. They also say they have offered to support schools who want to provide special units on school sites, but have had no takers. They are not in a position to force schools to comply.

 

I also feel that what sort of education is 'artificial' is a moot point. I would say that the current, curriculum-centred model of state education is very artificial indeed and runs counter to a huge body of research from the first half of the 20th century looking into what approaches were most effective. And I think it's a bit artificial for children's peers to be a group of 30 children who happen to be born within a few months of them. Human beings are tribal by nature, and 'naturally' associate with family and neighbours of different ages. Also many home educated children are far from isolated.

 

In short, there are a number of systems issues here which make it very difficult for what 'should' happen to happen. I honestly think you have been lucky in that your son's educational provision is working. My son's infant school was brilliant, if hampered by the LA's lack of resourcing. His junior school was awful. I'm open-minded about home educating my son. It's not what I would have chosen, because I know that a good school can offer opportunities that I can't. I am actively engaged with a local parent group lobbying for support for children with disabilities. I want to see appropriate support, locally, for every disabled child and every child with SEN. But I am prepared to continue home educating my boy until he's 18 if necessary, rather than put him back into an environment like the one we took him out of.

 

[teachermum1]

That would be fair comment, teachermum, IF, on balance, a child with autism was learning to follow the 'rules of society' in school. Unfortunately, for my son, that wasn't what was happening. A couple of observations:

 

1) schools are nothing like the environment a child is likely to enter as an adult. The only current work environment I can think of which is similar to that of school is a call-centre or large open-plan office, neither of which someone with autism is likely to choose to work in. I think schools forget this, because teachers, by definition, (I used to teach in the primary sector) are often not very familiar with other workplaces, and it's easy to assume that the child's future work environment will be like the teachers' work environment. In my experience the workplace is much generally much smaller-scale, much more negotiable and adaptive and much more supportive than school.

 

2) schools are full of children. By definition, children do not behave like adults. They are still learning these skills and often get them wrong. The main lesson my son learned about socialisation at school (aged 8) was this (in his words); "I was very kind to the other children and they kept treating me like a mouthful of dirt." They did. He had the scars and bruises to prove it.

 

 

 

 

Well done for getting your son a statement. We started the statementing process twice, but it was never completed. Massive under-resourcing led to unbelievable delays in the evidence-gathering phase. My expectations for the school to 'make adjustments' were ignored, as were those of the learning support advisory teacher. By the time we had reached the conclusion that the school was unable (or unwilling) to support our son appropriately, he was in such a mess from the lack of appropriate support and the bullying that we had to remove him from school for his own safety. We could have kept him at school and 'forced the school to be more inclusive' by kicking up a bigger fuss, but weren't prepared to risk our son's well-being in the process.

 

I think you should also be thankful that your son responds to punishment. Many children with autism don't. There are issues with the dopamine pathways which mediate reward and punishment and some children simply don't respond to sanctions - or rewards, for that matter. It's significant that some autism-specialist schools have sanction-free regimes.

 

 

 

No they shouldn't. But some of them have no option. Our local Parent Partnership Service recently called a meeting with the LA because they were concerned about the number of parents who were taking their SEN children out of school because of poor support. I was invited to the meeting as a token parent! The LA have just built a state-of-the-art special school and argue that there is no way they can build a similar school for autistic children - the area of support most lacking. They also say they have offered to support schools who want to provide special units on school sites, but have had no takers. They are not in a position to force schools to comply.

 

I also feel that what sort of education is 'artificial' is a moot point. I would say that the current, curriculum-centred model of state education is very artificial indeed and runs counter to a huge body of research from the first half of the 20th century looking into what approaches were most effective. And I think it's a bit artificial for children's peers to be a group of 30 children who happen to be born within a few months of them. Human beings are tribal by nature, and 'naturally' associate with family and neighbours of different ages. Also many home educated children are far from isolated.

 

In short, there are a number of systems issues here which make it very difficult for what 'should' happen to happen. I honestly think you have been lucky in that your son's educational provision is working. My son's infant school was brilliant, if hampered by the LA's lack of resourcing. His junior school was awful. I'm open-minded about home educating my son. It's not what I would have chosen, because I know that a good school can offer opportunities that I can't. I am actively engaged with a local parent group lobbying for support for children with disabilities. I want to see appropriate support, locally, for every disabled child and every child with SEN. But I am prepared to continue home educating my boy until he's 18 if necessary, rather than put him back into an environment like the one we took him out of.

 

 

I do get what you're saying and am sorry that your boy had such a bad experience. I guess the difference for my son is that the other kids DO accept him and are helping him make progress much more than the adults do. He has a group of very very strong minded girls who stand up to him when he's trying to be in total control but also support him and show him care. He's learning to socialise and that's what I mean about formal education providing real world experience. It's the adults in his school that need adjusting (like you, his Infant school were great, but the Junior school are much harder work). It is a battle getting them to understand and make adjustments for J, but I can handle fighting the adults to change. But if, like you, it was the children doing the damage, I can see why you would take your child out.

[coolblue]

I do get what you're saying and am sorry that your boy had such a bad experience. I guess the difference for my son is that the other kids DO accept him and are helping him make progress much more than the adults do. He has a group of very very strong minded girls who stand up to him when he's trying to be in total control but also support him and show him care. He's learning to socialise and that's what I mean about formal education providing real world experience. It's the adults in his school that need adjusting (like you, his Infant school were great, but the Junior school are much harder work). It is a battle getting them to understand and make adjustments for J, but I can handle fighting the adults to change. But if, like you, it was the children doing the damage, I can see why you would take your child out.

[baddad]

It's significant that some autism-specialist schools have sanction-free regimes.

 

 

Hi coolblue/all -

Sorry - I know I said.......

 

Do you have any information on these schools or what they practise instead of sanctions/rewards? I can't think of anything associated with social education that isn't a sanction or reward (a 'social story', for example, is a sanction or reward depending on whether the child likes or dislikes the process of reading/hearing a social story. Time Out is a sanction/(indirect) 'reward' depending on whether the child enjoys and benefits from the break or rallies against it when it's imposed to protect others). Similarly, do you have some leads on research that indicate there are proven issues with dopamine that mediate reward and sanction (as an aside, why do you frequently use the term 'punishment' rather than sanction - do you consider them to be the same thing?) as an autism-specific phenomena or as one that negates reward/sanction completely as an affective teaching/behavioural training method?

 

You make the point that school isn't like an adult work environment, but I don't see what you're trying to suggest here. Do you believe that work environments don't generate the same sort of pressures, expectations, sanctions and rewards? It may be more subtle in a work environment (but not necessarily so), but the school environment as a child accessible model of adult life is probably the best we can offer children, because for most of us (ASD or not) it doesn't get better, it gets worse. I do know many autistic children who have successfully negotiated the educational system - both in mainstream and specialised school placements. The statistics on autism and unemployment (whether long-term or through being unable to 'keep' jobs) indicate anything but more negotiable, adaptive and supportive environments.

 

You make the additional point that schools are full of children who are learning social skills and therefore often get them wrong. I totally agree with that, which is why I believe that a working inclusive model is the best model. It is the place they can learn to get them right. An artificial environment, where children only interact with sympathetic adults or small numbers of sympathetic children isn't going to prepare them for the day that environment is removed. I also do not believe these are skills they will just grow into or 'acquire' - pretty much every branch of psychcology agrees on one thing: the blueprint for adult behaviour and responses are laid down in childhood (that doesn't mean an adult can't change, but it does mean that change is harder and contra to the naturally occuring internal impulse). I do think many autistic people have am 'extended' childhood - i.e. that their emotional/social responses develop at a differnet rate depending on conceptual understanding - but this just extends the learning curve and places greater emphasis on 'rote' learning, which again is best promoted in a 'real' rather than an artificial environment.

 

I do take your point about the current school system being 'artificial', but it's artificial by necessity. The tribal lifestyle you represent as normal is actually even more unrealistic - extended families, neighbourliness etc are not how the modern world works (unless you are really, really lucky - far luckier I guess than teachermum was in getting a statement). In one way we do live in a more 'tribal' society - the evidence is in the newspapers every day because we have 'tribes' doing what tribes do - warring with each other. Tribal living is definitely not a model for inclusion, acceptance, understanding and accomodation: it is an 'us and them' society - which is exactly what anyone 'different' doesn't need.

 

Again, I'm not 'anti' home ed in any way. Certainly if a child were being abused or neglected in a school environment then there's no way on earth they should be kept there. Whatever education we give our children there will be 'swings and roundabouts'. What constitutes a loss or gain will vary enormously on circumstances and perspective. I think 'circumstances' are hugely important, but 'perspectives' are less so, because perspectives aren't 'facts'.

 

L&P

 

BD

Edited January 1, 2009 by baddad

[coolblue]

My apologies to JeanneA for hijacking her thread - and for the length of this post.

 

Here goes baddad!

 

Sanctions/rewards. I have a friend whose son attends a Cambian group school. According to her, they implement a reward system for behavioural targets, but no sanctions. The only sanction is that you don't get the reward if you don't manage the behaviour. I?m talking about a formal system of rewards and sanctions, in which a) as you point out, the child may perceive the reward/sanction differently from what was intended, and b ) the child may have to make a connection between the behaviour and the reward/sanction. In some formal systems, the connection is a tenuous one and the child may not make the link, rendering the reward/sanction ineffective.

 

Research. There's a significant body of evidence suggesting that some children with autism have dopamine issues. Low levels of melatonin, abnormal serotonin levels, blue light enhancing/worsening vision, poor frontal lobe function, and I've already mentioned lack of response to rewards/sanctions. Neurotransmitter sytems are complex and interact with each other, so I'm not suggesting dopamine levels are a primary cause of these problems, just that a lot of fingers are pointing at dopamine pathways.

 

Punishment. I wasn't aware that I was using it 'frequently'. I was responding to teachermum's post, in which she used it. Since autistic symptoms are likely to be caused by a range of different primary causes I don't think there are any 'autism-specific' phenomena. Positive and negative reinforcement are not symmetrical in their effects, and different children will respond in different ways. The salience of the reinforcer to the child also plays a part. My son, for example, loved getting stickers as a reward at school, but their effect was significantly reduced if they were football stickers because he hates football.

 

School/work environments. This would depend completely on a) the school b ) the level of disability and c) the work environment. Someone with AS who was academically able, attended a supportive school and ended up as a university research fellow could have a very successful career and a happy life. For someone with a wide range of disabilities, who attended a school that had no idea what it was doing, and who had few employment options because of where they lived would have a different story to tell. It isn't the school environment per se, which prepares children for work, it's what happens in that school. Also, it isn't work per se which is more challenging than school, it's what happens in the work environment.

 

Children learning social skills. Well they do if it's a good school which understands what it's doing. My son's school's model was to throw children into an environment many of them couldn't cope with, punish them when they got it wrong, but fail to model appropriate behaviour, and fail to supervise adequately. This was a recipe for disaster, which is why so many parents complained about the level of bullying.

 

Artificial environments. I'm not sure how exposing children to social situations they can't cope with prepares them in anyway for adult life. Just the opposite, IMO, since they will have learned to avoid problematic situations because they know they can't deal with them. Bandura's social learning theory suggests that people learn best when good behaviour is modelled in a safe environment. That is happening in some schools, but not in all.

I also do not believe these are skills they will just grow into or 'acquire' - pretty much every branch of psychcology agrees on one thing: the blueprint for adult behaviour and responses are laid down in childhood (that doesn't mean an adult can't change, but it does mean that change is harder and contra to the naturally occuring internal impulse). I do think many autistic people have am 'extended' childhood - i.e. that their emotional/social responses develop at a differnet rate depending on conceptual understanding - but this just extends the learning curve and places greater emphasis on 'rote' learning, which again is best promoted in a 'real' rather than an artificial environment.

Why do you think school is a 'real' environment? What reality does it reflect?

 

I do take your point about the current school system being 'artificial', but it's artificial by necessity.

We could design any school/education system we liked provided it was workable. The educational pendulum has swung steadily to and fro over the last 150 years. Until the education system is actually derived from what we know about how children learn, rather than on political ideology or what Chris Woodhead did when he was at school, it will doubtless continue to swing for the forseeable future.

 

Tribal social groups. I wasn't suggesting that a tribal lifestyle was normal, nor was I advocating it; I said it was 'natural' in response to a comment about HE being 'artificial'. It's the way human beings tend to socialise if left to their own devices. It has some serious downsides, which is why all societies have developed complex cultural mores to improve things. It also has some benefits. There is no need to abandon the baby with the bathwater. I would also question an acceptance of the way the modern world works. The way the world works is usually a product of human choices - the current model is a deeply questionable one of the global economic village. We don't have to do it like this just because the G8 think we do.

 

Again, I'm not 'anti' home ed in any way. Certainly if a child were being abused or neglected in a school environment then there's no way on earth they should be kept there. Whatever education we give our children there will be 'swings and roundabouts'. What constitutes a loss or gain will vary enormously on circumstances and perspective. I think 'circumstances' are hugely important, but 'perspectives' are less so, because perspectives aren't 'facts'.

 

 

 

[teachermum1]

Just to clarify punishment: if they 'punish' J (or if I do) it's usually be removing a privilege like computer or TV time, or at school, not allowing him to do something he loves like taking back the register. Consequences are very very clear and usually written down and always warned about and are used in conjunction with clear rewards. I don't punish him for behaviours that he has little control over (e.g. if he lashed out or had a meltdown because an alarm went off, I would be sympathetic not punitive and school would be the same. Ditto stuff like shouting out in class - he has ADHD as well as autism and so these are things he can't massively help yet, though obviously it is reinforced that these things aren't acceptable.) BUT he can often make choices, like all of us, and make a bad choice, and I think it helps him in learning to show him that bad choices lead to bad consequences/ punishments so that he learns to make the right choices more often. He DOES learn in this way. For example, he used to get up throughout mealtimes the whole time and then I introduced a consequence/ punishment if he got up more than twice. He eventually accepted this and now rarely gets up. Ditto the biting/ hitting thing - he loses privileges when he does this because he has to learn not to do it...but only if he bit or hit consciously to get his own way rather than during meltdown or something. It's a hard distinction to make, but people who know him well can do it - judge when he's behaving consciously and therefore needing punishment or consequence or when he's in need of sympathy and help.

 

Humans and animals learn this way. Everyone has to learn to make links between behaviour and reward or sanction. I would never use punishments like smacking, naughty steps etc. but seeing consequences to his actions are really important if he is going to change.

 

Re: schools. Well, they're a bit artificial but much closer to the real world of work that a high functioning child will live in than a home-ed situation.

 

Coolblue, you said that "I'm not sure how exposing children to social situations they can't cope with prepares them in anyway for adult life" but I think that ALL children find school difficult, not just ASD ones, and ALL need support to cope at times and yes, adult life is hard too! Part of what children learn in a good school with the right support is how to cope with difficulties. I appreciate that your son didn't have the right school or the right support, but in a different school with the right support, things can be different. It just does take an awful lot of work to achieve that - and believe me, it has taken years and years of battling really quite hard and I'm nowhere near there with this new school. It's not about being lucky, trust me - it's been about sheer determination that my son will stay where he is happy and has friends. I'm not trying to say that you didn't bother or didn't try as hard as me, by the way, but I'm saying that my situation is different because I got different things for J. Maybe things would have been different for your son with more help at school and a school with the right attitude - and I'm sure you tried for that and it's shocking that it didn't happen and that it doesn't happen for all the children that need it.

 

My son's school are trying to force him out to an EBD school and I am refusing because I want him to be with mainstream children (who he is learning from and adapting alongside them because he wants to be accepted, and who are learning from him that everyone's different and that he's still fun even if he is different from them) because that's how society is composed when adulthood comes for HF children who will be expected to integrate, and segregation or withdrawal of SEN kids from the mainstream now is such a shame for the future of this country.

 

Hope this makes sense.

[JsMum]

Teachermum 1 why are the school pushing him into an EBD school though, shouldnt it be a autism spersific school?

 

What do you do though when you have a good school with good role models and supportive teachers in a mainstream with a full time statement and it still doesnt work, the enviroment surely has to be a consideration also,

 

also if he is calling out in class this for J would be reguarded as a impulsive reaction, if he is doing this more often than his peers and been sanctioned more often than his peers then surely there has to be adjustments made, yes he cant be seen as getting away with it, but if the impulsive reactions are due to stress/anxiety then you have to look at reducing the stressors rather than causing more stress with sanctions and been the one always left out of doing the register.

 

Many of the special schools I visisted, didnt have detentions, didnt loose playtimes, there sanctions where adjusted to their individual need.

 

Many young people are sadly in prison who have got into difficulties and have Diagnosed/undiagnosed ADHD/Tourettes/Dyslexia/ HFA/AS and it clear that once in this system they require support, specialised accomadations, adaptions and exceptions made.

 

There is now a spersific Autistic Prison, because once they are in Jail, its clear that they cant cope with in those walls as much as they cant cope in the schools four walls or society.

 

I know I have to be very careful with J and his behaviour because its a high possibility he could end up in a prison throw the actions he makes especially when he is highly anxious and stressed but his needs are still there and he will still require support and provisions where ever he is.

 

JsMum

 

Edited January 1, 2009 by JsMum

[Cat]

1) schools are nothing like the environment a child is likely to enter as an adult. The only current work environment I can think of which is similar to that of school is a call-centre or large open-plan office, neither of which someone with autism is likely to choose to work in. I think schools forget this, because teachers, by definition, (I used to teach in the primary sector) are often not very familiar with other workplaces, and it's easy to assume that the child's future work environment will be like the teachers' work environment. In my experience the workplace is much generally much smaller-scale, much more negotiable and adaptive and much more supportive than school.

 

I agree with you that a school environment is pretty much a school environment and nothing else to an autistic child unless the school is doing a putting in a great deal of effort into improving the social skills of an autistic child. To do this however they need to have a pretty good knowledge of autism and sadly not many of them do still to this day, something that the All Party Parliamentary Group noted in the 'Half Way There'report last year. It is a well known fact that many children with autism have great difficulty transferring skills learnt in one environment to another. This was especially true with my youngest. He latched onto the school rules like a vice and applied them rigidly in every social situation he encountered which made him less then popular when he was taking part in out of school activities. I personally believe that our children do not simply 'pick up' their social skills from sitting alongside a same age peer group. They need help to acquire meaningful social skills. We were actually asked not to take our son back to a holiday play scheme being ran in our local community association because he was spoiling it for all of the other children.

 

Teaching my son that he had to keep his hands feet and other objects to himself is not something I needed the school to teach him. Although he did attempt to tell his teacher that hands and feet are not objects but part of your body. They for their part ignored him. I was and am quite capable of teaching my son that he has to keep his hands feet and other objects to himself. I needed the school to take on the 'bigger picture' and make socializing make sense for my son much like the NAS ?make school make sense? campaign sadly for many children with autism school does not make any sense at all. My eldest son now works in a Call Centre and I have heard him say many times that our 21 year old with AS could never work in a Call Centre because they are very much like school, because they are big and very busy. He did say that his brother would get a perfect QA because he would remember to ask every question as an advisor you are meant to ask the customer but that he would also be in meltdown before lunchtime.

 

2) schools are full of children. By definition, children do not behave like adults. They are still learning these skills and often get them wrong. The main lesson my son learned about socialisation at school (aged 8) was this (in his words); "I was very kind to the other children and they kept treating me like a mouthful of dirt." They did. He had the scars and bruises to prove it.

 

Again I agree with you. It can be difficult for any child who is learning skills which are new to them while they often get them wrong, but it can be disastrous for a child with autism whose self esteem is often low and who having failed once seldom wants to get back on the horse and ride it again. This is made even worse when you add to the equation that there is seldom anyone in the school who understands what falling off the horse actually does to an autistic child. My youngest stuck to the school rules like glue only to find that he was often told to go away and not tell tales when he was telling the teacher/dinner nanny/head that someone had just broken the rules. Of course when a packet of grass seeds were force fed to my son by his peer group who told him that he would then grow a lovely garden in his tummy I was told that the other children were still very young and it was simply horse play. How do you explain to an autistic child that adults often make the rules up as they go along and that sometimes rules were made to be broken?

 

Cat

Edited January 1, 2009 by Cat

[baddad]

And more apologies from me

 

My apologies to JeanneA for hijacking her thread - and for the length of this post.

 

Here goes baddad!

 

Sanctions/rewards. I have a friend whose son attends a Cambian group school. According to her, they implement a reward system for behavioural targets, but no sanctions. The only sanction is that you don't get the reward if you don't manage the behaviour. I?m talking about a formal system of rewards and sanctions, in which a) as you point out, the child may perceive the reward/sanction differently from what was intended, and b ) the child may have to make a connection between the behaviour and the reward/sanction. In some formal systems, the connection is a tenuous one and the child may not make the link, rendering the reward/sanction ineffective.

 

So what's the difference between a 'sanction' and not giving a reward? They both imply a negative judgement on the negative behaviour... this distinction actually seems far more complex and difficult than what it's trying to replace - if the child is unable to understand the concept of reward/sanction how is reward/no reward going to be any easier for them - especially with no other reinforcers? I think most kids would find that incredibly confusing, austism or not.

And if there are no sanctions what do they do if a child's behaviour is harmful to others? Do they not intervene? If they intervene it's a sanction, if they don't it's enabling abuse...

 

 

Research. There's a significant body of evidence suggesting that some children with autism have dopamine issues. Low levels of melatonin, abnormal serotonin levels, blue light enhancing/worsening vision, poor frontal lobe function, and I've already mentioned lack of response to rewards/sanctions. Neurotransmitter sytems are complex and interact with each other, so I'm not suggesting dopamine levels are a primary cause of these problems, just that a lot of fingers are pointing at dopamine pathways.

 

That's my point, there is some evidence that some children with autism... I'm not saying that these children (and I'm assuming the same chemical imbalances occur in some non autistic children?) shouldn't be differentiated for, but that should be based on diagnosis not assumption. I think there are far too many assumptions already made about autistic children and they all focus on 'can't do' rather than 'can' without looking at the wider issues that might also be factors.

 

Punishment. I wasn't aware that I was using it 'frequently'. I was responding to teachermum's post, in which she used it. Since autistic symptoms are likely to be caused by a range of different primary causes I don't think there are any 'autism-specific' phenomena. Positive and negative reinforcement are not symmetrical in their effects, and different children will respond in different ways. The salience of the reinforcer to the child also plays a part. My son, for example, loved getting stickers as a reward at school, but their effect was significantly reduced if they were football stickers because he hates football.

 

Absolutely - find a sanction or reward that actually means something to the child and chances are you'll get results. The (hypothetical) presence of a dopamine deficiency may make the issue more complex, but the basic response patterns that are evident in all lifeforms remain a constant. Even in a self-destructive organism it's not a case of the principle being flawed, it's a question of the perceptions of the organism as to what constitutes reward/sanction.

 

School/work environments. This would depend completely on a) the school b ) the level of disability and c) the work environment. Someone with AS who was academically able, attended a supportive school and ended up as a university research fellow could have a very successful career and a happy life. For someone with a wide range of disabilities, who attended a school that had no idea what it was doing, and who had few employment options because of where they lived would have a different story to tell. It isn't the school environment per se, which prepares children for work, it's what happens in that school. Also, it isn't work per se which is more challenging than school, it's what happens in the work environment.Children learning social skills. Well they do if it's a good school which understands what it's doing. My son's school's model was to throw children into an environment many of them couldn't cope with, punish them when they got it wrong, but fail to model appropriate behaviour, and fail to supervise adequately. This was a recipe for disaster, which is why so many parents complained about the level of bullying.

 

Similarly, a child who was casually educated at home, lived a life of relative isolation and was bought up in an over-protective environment that demanded no self-responsibility, no behavioral control or expectations would also be ill equipped to 'cope' in the real world. Of course, we're talking about worst case scenario's. I'd also add that someone (autistic or otherwise) who had a completely awful school career and few work options could also lead a happy life. Some of our children will never be able to work or achieve what other children achieve in school. Thank God happiness isn't apportioned on that basis.

On the subject of that 'worst case scenario': My son's primary school was brilliant, and had a wonderful reputation with most parents. There were still many, though, who complained bitterly about it purely and simply because their child didn't flourish there for whatever reason. Often bullying was an issue parents highlighted, but this was usually based on their interpretation of the word bully which basically included every child/teacher/TA/dinner lady in the school but excludedtheir own child from any sort of expectation whatsoever. In many cases the reason the children didn't flourish was because of issues in their lives outside of school, but the perspectives of the parent's concerned never once incorpororated that into the equation. Please don't misread that - I'm not making judgements about anyone on this forum or contributing to this thread or on parents who choose to home ed - I'm just highlighting another real psychological factor that needs to be taken into consideration: that the parents right to an opinion doesn't make the opinion right - and that applies equally to my own perspectives as anyone elses.

 

Artificial environments. I'm not sure how exposing children to social situations they can't cope with prepares them in anyway for adult life. Just the opposite, IMO, since they will have learned to avoid problematic situations because they know they can't deal with them. Bandura's social learning theory suggests that people learn best when good behaviour is modelled in a safe environment. That is happening in some schools, but not in all. Why do you think school is a 'real' environment? What reality does it reflect?

 

What reality does school reflect? It reflects the reality that the vast majority of children educated in our country are educated in schools and that it is considered the 'norm'... 'Exposing' children to social situations they can't handle is also normal. Have you seen a two year old at a wedding? They go mental! But that's a learning opportunity. I don't 'expose' my son to social situations he can't handle, I support him within them and he learns how to cope with them. I agree with Bandura's theory, but would add the word 'real' - that people learn best when good behaviour is modelled in a safe and real environment. Coping in a classroom of two or three and mum is not the same thing as coping in a classroom of thirty, yet the latter is what most people will consider a real environment and what is most likely to be respresentative of life after the mum+ 3 environment has disappeared.

 

We could design any school/education system we liked provided it was workable. The educational pendulum has swung steadily to and fro over the last 150 years. Until the education system is actually derived from what we know about how children learn, rather than on political ideology or what Chris Woodhead did when he was at school, it will doubtless continue to swing for the forseeable future.

 

I think we have a very flawed education system. A very VERY flawed one. Do I think the best working model, making best use of the available resources, is going to arise from a united political and social ideology or from the views of one parent who has the direct interests of their child at the heart of every decision? I'll go with the former, because that's considering a far wider range of issues, and taking into account the opinions of people who have access to far more information on what those issues are.

 

Tribal social groups. I wasn't suggesting that a tribal lifestyle was normal, nor was I advocating it; I said it was 'natural' in response to a comment about HE being 'artificial'. It's the way human beings tend to socialise if left to their own devices. It has some serious downsides, which is why all societies have developed complex cultural mores to improve things. It also has some benefits. There is no need to abandon the baby with the bathwater. I would also question an acceptance of the way the modern world works. The way the world works is usually a product of human choices - the current model is a deeply questionable one of the global economic village. We don't have to do it like this just because the G8 think we do.

 

The model we have isn't based on a global economic village - it's based on a tribal system that exploits one 'tribe' for the benefit of another. We call it a global economic village to salve the consciences of the heads of corporations who do the exploiting on our behalf. Whenever a light is shone on those being exploited so that we are forced to recognise them as fellow human beings we see this mass outpouring of anger coupled with huge demands for funding to help them. Those controlling that funding then divert the light onto something else and we all go back to how we were (and don't think I'm excluding myself from that - I'm as guilty as anyone else!). I'd be happy to lob that particular baby out with the bathwater but I don't think (despite the economy crunch) it'll happen. What we have now is a natural by-product of the 50's 'nuclear family'... the 'I'm alright, Jack' culture. That's exactly why millions of people have lost sight of human rights while continually championing the rights of themselves or their own.

 

 

PS: Jeanne - this has gone completely off topic! I'm finding this 'new topic' really interesting and it appears many other posters are too... If you're happy with that, can we go with the flow? If not, perhaps one of those lovely mods could split the topic for us so we can continue the discussion elsewhere?

 

 

L&P

 

BD

[Cat]

Re: schools. Well, they're a bit artificial but much closer to the real world of work that a high functioning child will live in than a home-ed situation.

 

Could you please quantify this statement. My home educated 11 year old is, and has been, an active member of St John's Ambulance Brigade for 3 years now. He is also a member of our local wellness centre and gym where he was chosen to complete a millionth mile for Children in Need in November. He is also a member of a football team and our local Ice Hockey Club. He attends all of these groups and games alone without either myself or my husband being with him. Granted our 21 year old son with AS does go to Ice Hockey with him but that is only because he was the original supporter of the Vipers who got his brother interested and the Area is a 22 mile round trip, so I would not be happy with any 11 year old making that journey alone. At this very moment I have 7 lads who have invaded my sitting room who are all playing games on the wii having just arrived back from a footie game.

 

All of the above says 'real world' to me. I think that part of the problem is that there is a misconception that home edders take their children out of school so that they can wrap them in cotton wool and protect them. Most of us take them out to enable them to live in the 'real world' and not isolate them from it. Also when you take into account that only 12% of the autistic adult population are in 'some type' of employment then us home edders can't really do any worse that than the system is doing right now can we.

 

Cat

Edited January 1, 2009 by Cat

[JeanneA]

Hi I'm quite happy with any comments you are making so carry on

[coolblue]

Hi baddad.

 

Sanctions/rewards. I was referring to formal systems such as staying in at playtime, getting sad faces, etc, which the child may not be able to link with their behaviour. Teachermum has made it clear she doesn?t implement that kind of reward/punishment schedule. I?m not sure it?s useful to do a fine-grained abstract analysis of what constitutes a sanction or not because whether or not sanctions or rewards are used, and what they are will depend on their effectiveness in shaping the child?s behaviour.

 

Dopamine. Not sure what you mean by ?diagnosis?. Just because ten children all fit the diagnostic criteria for autism does not mean that they are all going to have the same causes for their symptoms. I?m quite interested in finding out what causes autism, and in my son, and in some other children, it?s pretty clear that dopamine is implicated. Several other neurotransmitters are implicated too, but I mentioned dopamine because we were talking about rewards/punishments and you asked about research.

 

?? the basic response patterns that are evident in all lifeforms remain a constant.? Sorry, you?ll have to unpack that assertion a bit! Takes no account of emergent properties of genetic interactions. As in addictive behaviours in humans.

 

Home education. I?m not suggesting that all home education is suitable for all children, any more than all school education is suitable for all children.

 

What reality does school reflect? It reflects the reality that the vast majority of children educated in our country are educated in schools and that it is considered the 'norm'...

. But that?s exactly my point. I keep being told that children who don?t go to school won?t be able to cope with the real world. But I can?t think of anywhere in the adult world that is like school, apart from the armed forces or a call centre ? and even there, there are distinct differences. Even what children do in school isn?t real. I liked school, and did well, but that was because I enjoyed the work. I was very conscious that it was all a bit unreal. No one would die or starve or have no light or water supply if I didn?t do my maths homework.

 

'Exposing' children to social situations they can't handle is also normal. Have you seen a two year old at a wedding? They go mental! But that's a learning opportunity. I don't 'expose' my son to social situations he can't handle, I support him within them and he learns how to cope with them.

Exactly. You are there, supporting your son. You understand him, are aware of what he can cope with, and can pull him out at the first sign that he is really not handling the situation. That is not possible for most autistic children in most schools.

I agree with Bandura's theory, but would add the word 'real' - that people learn best when good behaviour is modelled in a safe and real environment. Coping in a classroom of two or three and mum is not the same thing as coping in a classroom of thirty, yet the latter is what most people will consider a real environment and what is most likely to be respresentative of life after the mum+ 3 environment has disappeared.

Again, I don?t know where these adult classrooms of 30 people of one?s own age, immaturity and inexperience are.

 

I think we have a very flawed education system. A very VERY flawed one. Do I think the best working model, making best use of the available resources, is going to arise from a united political and social ideology or from the views of one parent who has the direct interests of their child at the heart of every decision? I'll go with the former, because that's considering a far wider range of issues, and taking into account the opinions of people who have access to far more information on what those issues are.

That?s what one would expect. So why is it so flawed?

 

The model we have isn't based on a global economic village - it's based on a tribal system that exploits one 'tribe' for the benefit of another. We call it a global economic village to salve the consciences of the heads of corporations who do the exploiting on our behalf. Whenever a light is shone on those being exploited so that we are forced to recognise them as fellow human beings we see this mass outpouring of anger coupled with huge demands for funding to help them. Those controlling that funding then divert the light onto something else and we all go back to how we were (and don't think I'm excluding myself from that - I'm as guilty as anyone else!). I'd be happy to lob that particular baby out with the bathwater but I don't think (despite the economy crunch) it'll happen. What we have now is a natural by-product of the 50's 'nuclear family'... the 'I'm alright, Jack' culture. That's exactly why millions of people have lost sight of human rights while continually championing the rights of themselves or their own.

I?d second all that! As somebody said, ?We now have a global village, with a disproportionate number of idiots.?

 

[baddad]

Hi baddad.

 

Sanctions/rewards. I was referring to formal systems such as staying in at playtime, getting sad faces, etc, which the child may not be able to link with their behaviour. Teachermum has made it clear she doesn?t implement that kind of reward/punishment schedule. I?m not sure it?s useful to do a fine-grained abstract analysis of what constitutes a sanction or not because whether or not sanctions or rewards are used, and what they are will depend on their effectiveness in shaping the child?s behaviour.

 

Oh I see... thanks for qualifying that I took your first post that mentioned a school with no sanctions to mean a school that used no sanctions, not one that differentiated between 'formal' and 'non-formal' ones... TBH I'm not quite sure what that means, but I'm sure it makes sense. I think if you make a blanket assertion that there is evidence to indicate that some children don't respond to sanctions then it is important to qualify what constitutes a sanction, otherwise you could be talking about completely different things...

 

 

Dopamine. Not sure what you mean by ?diagnosis?. Just because ten children all fit the diagnostic criteria for autism does not mean that they are all going to have the same causes for their symptoms. I?m quite interested in finding out what causes autism, and in my son, and in some other children, it?s pretty clear that dopamine is implicated. Several other neurotransmitters are implicated too, but I mentioned dopamine because we were talking about rewards/punishments and you asked about research. .

 

I'm interested in finding out what causes autism too, but your sort of piggybacking all sorts of 'possibles' together without evidence: How is it clear that dopamine is a factor in causing autism? That a dopamine deficiency is present isn't proof that it's a 'cause', and is there research to indicate that the non-autsistic population is exempt from the same chemical imbalances? That said, the point I was initially trying to make was that without tests for dopamine deficiency or whatever it is we're talking about here you can't assume it as a factor in cases where children are non-responsive to sanctions. First thing I'd look at is 'does the sanction have any meaning to the child'

 

?? the basic response patterns that are evident in all lifeforms remain a constant.? Sorry, you?ll have to unpack that assertion a bit! Takes no account of emergent properties of genetic interactions. As in addictive behaviours in humans.

 

The addictive behaviour stimulates a response.The response may be entirely destructive and/or viewed as wholly undesirable to the actor, but on a fundamental level it acts as a reward.

 

Exactly. You are there, supporting your son. You understand him, are aware of what he can cope with, and can pull him out at the first sign that he is really not handling the situation. That is not possible for most autistic children in most schools. Again, I don?t know where these adult classrooms of 30 people of one?s own age, immaturity and inexperience are.

 

That's a huge assumption based on the inherently flawed concept that 'parents know best' . All the evidence on abuse suggests that parents do not necessarily 'understand' their children -and the statistics on abuse in the disabled population indicate that disability actually impacts negatively on that. Anybody can have a child, but teachers at the very least have to go through some rudimentary training... By the same token, the parent's natural instinct to protect a child can also be a affected when disability is a factor - I've met many, many parents of disabled adults who still respond to them as though they were kids.

 

No, there are not many adult classrooms of 30 people of ones age, inexperience and immaturity outside of the education system - but i don't suppose there's many work environments where you work alongside of mum and one or two siblings either. Working alongside a number of people who you only know through work is the norm for most people, and doing so without the support of family is also the norm.

 

That?s what one would expect. So why is it so flawed?

 

You tell me! Probably money, I expect

 

I?d second all that! As somebody said, ?We now have a global village, with a disproportionate number of idiots.?

 

Disproportionate? I'll put my hands up and admit I'm an idiot, but I don't think our number is disproportionate (mind you - I can't count once i get past fingers and toes, so maybe i just run out of the maths to work it out!)? Compared to the state of the education system before some soundbite engineer coined the term global village I suspect the general trend is in the right direction!

 

L&P

 

BD

 

[Unaltronome]

Hello baddad,

 

my apologies if the quotations are crudely achieved and if the links do not work, it is my first post and I'm not familiar with the tools available on this forum.

 

 

 

 

That's my point, there is some evidence that some children with autism... I'm not saying that these children (and I'm assuming the same chemical imbalances occur in some non autistic children?) shouldn't be differentiated for, but that should be based on diagnosis not assumption.

 

Most diagnoses are made by assumptions. A list of symptoms are merely indicative or consistent with a particular condition, unless a biological test is available and, of course, in that circumstance there will still be a margin of error.

Most of the tests to 'diagnose' autism are biased as there are based upon assumptions.

 

I'm interested in finding out what causes autism too, but your sort of piggybacking all sorts of 'possibles' together without evidence: How is it clear that dopamine is a factor in causing autism? That a dopamine deficiency is present isn't proof that it's a 'cause', and is there research to indicate that the non-autsistic population is exempt from the same chemical imbalances? That said, the point I was initially trying to make was that without tests for dopamine deficiency or whatever it is we're talking about here you can't assume it as a factor in cases where children are non-responsive to sanctions.

 

To find out the causes 'autism'? It might be necessary to clarify what is autism first, but to do so it would require to make 'assumptions' and test possibilities. Now, how does one suppose to produce evidence from research that is based upon assumptions? At some point one has to accept that the only proof one will have is no more than 'some evidence' or 'the results are indicative of'.

If one were to make the assumption of autism being no more than a cluster of symptoms, then there are a few genetic conditions already identified, whereby 'autism' is one of the symptoms(tests already available!): 22q11.2 deletion, 22q13.3deletion, 15q11-13 methylation, 7q11.23deletion, 8q24.11 deletion, the more famous fragileX, FG syndrome, Sotos syndrome,...just to mention a few.

Re: 'some' evidence indicative as to dopamine implication in autism:

 

http://www.thelancet.com/journals/lancet/a...3326-0/fulltext[/url]

 

http://www.ncbi.nlm.nih.gov/pubmed/1875489...pt=AbstractPlus

 

http://imfar.confex.com/imfar/2008/webprogram/Paper2980.html

 

http://serendip.brynmawr.edu/exchange/node/2040

 

 

That's a huge assumption based on the inherently flawed concept that 'parents know best' . All the evidence on abuse suggests that parents do not necessarily 'understand' their children -and the statistics on abuse in the disabled population indicate that disability actually impacts negatively on that.

 

Would you be so kind as to point out where I might find such evidence?

 

 

My son's primary school was brilliant, and had a wonderful reputation with most parents. There were still many, though, who complained bitterly about it purely and simply because their child didn't flourish there for whatever reason. Often bullying was an issue parents highlighted, but this was usually based on their interpretation of the word bully which basically included every child/teacher/TA/dinner lady in the school but excludedtheir own child from any sort of expectation whatsoever. In many cases the reason the children didn't flourish was because of issues in their lives outside of school, but the perspectives of the parent's concerned never once incorpororated that into the equation.

 

May I ask you how you know this and could you please define 'bully/bullying'?

 

 

 

[teachermum1]

JsMum, they're trying for the EBD school because there's nowhere round here for academically bright ASD kids. It's either a school for lower-functioning, non-verbal kids (and J is far far too verbal) or a school for generic learning difficulties or an EBD school. Or a private school an hour away which will cost �80,000 a year. So that's why he will stay in mainstream, because I want him there (for good reasons) and the LEA want him there (for bad, financial reasons, but hey - suits me for now)...at least I hope that's how the LEA will respond to the Annual Review recommendations. While there's something in school that J likes (and he openly says that he loves school and his friends), he will go there.

[Cat]

 

To find out the causes 'autism'? It might be necessary to clarify what is autism first, but to do so it would require to make 'assumptions' and test possibilities. Now, how does one suppose to produce evidence from research that is based upon assumptions? At some point one has to accept that the only proof one will have is no more than 'some evidence' or 'the results are indicative of'.

 

I now believe that at this moment in time we really do not know what autism truly is. I no longer believe that it is simply a triad of impairments. I now tend to believe that the triad is brought about by many other factors and is not the cause of autism but comes about as the result of many things which collectively will present as the triad. Autism is still a pretty new condition and it is often stated that we still know very little about it - how true.

 

I subscribe to Donna Williams view that autism is a fruit salad and that there are many different ways to make a fruit salad. I also find Olga Bogdashina's work insightful and very thought provoking. Add this to the work that people like Paul Shattock are doing re the biological side of autism, and perhaps we need to go back to basics and be open enough to question if autism really is simply a triad of impairments.

 

My views have certainly evolved since my sons were first diagnosed 9 years ago and I am pleased to say that ?some? of our leading lights are also asking the same questions as some of the parents I know.

 

Cat

[baddad]

Hi unaltronome - As the boards don't copy quotes I will have to reply by referring back to my original post for the bits you quoted (?) Hope that makes sense...

 

Most diagnosis are not made by assumptions. Most diagnosis are made by assessment of symptoms and/or tests that indicate the presence (or non-existence) of something or other within the body - i.e. anaemia would be indicated by a lack of red bloodcells/cancer indicated by the presence of cancerous growths. A dx of autism is largely based on 'assumptions' in that at present there are no common 'marker's' that are present in all autistic people that can be readily identified other than behavioural anomalies.

 

I'm sure there is some evidence to show connections between dopamine anomalies and autism - I wasn't questioning that. I was just questioning whether those anomalies only exist within the autistic population, and if they do if that is also indicative as the root cause of non-response to sanction/reward strategies and if so whether that applies to all autistic people who have these dopamine anomalies or only some. That's what I meant as 'piggybacking'. trying to think of an example - if there is evidence that Scottish people are more likely to have red hair it doesn't suggest that all Scottish people have red hair or that only Scottish people have red hair. similarly, if evidence emerged to indicate that red haired people have fiery tempers it doesn't follow that all Scottish people have fiery tempers or that only red haired people have fiery tempers... If there did emerge evidence that there is a predisposition among red-haired Scottish people to have fiery tempers it doesn't prove any connection between any of those individual pieces of evidence... it could just as easily be that Scottish people eat more Haggis than non-Scottish people and that haggis causes red hair and fiery tempers, but you'd only find that out by comparing the behaviours of non-haggis eating Scottish people or non-red haired haggis eating Scottish people etc etc etc...

 

I take it you mean disability and abuse rather than parents not automatically knowing what's best for their child(?)

It's been so long since I researched abuse statistics within the disabled population that I don't have the 'evidence' on my PC anymore, but there is a huge amount of data to indicate that the disabled population is more at risk of abuse than the non-disabled population... a quick internet search using 'disability and abuse' will probably bag you plenty. The only name I remember from my research (because it was so memorable a name) is 'Safilios-Rothschild', but this may or may not have been to do with abuse...

 

How do i know my son's school had a brilliant reputation? Conversations with other parents. How do I know the attitudes of some parents to bullying and the home backgrounds etc? The same way. These are people living in my community, some of them people I interacted with on a daily basis.

No I can't define bully/bullying. Can you? It means different things to different people, and is often down to personal interpretation. I define it as someone deliberately and maliciously directly or indirectly hurting or causing to be hurt (emotionally or physically) another person without provocation or reason. But I have seen some parents interpret a teacher trying to stop their child from hurting another as an act of 'bullying' because they have interpreted the intervention as a judgement. I've also seen parents judging completely automatic responses that have implied no malicious or deliberate intent to hurt as bullying. I've also seen parents defending vicious attacks by their own children on other children, based on the assumption that the other child 'must' have done something. I've seen dog owners on TV making the same sorts of assertions after their dog has ripped the face off of a small child. With the exception of the dog scenario you'll probably find examples of all these things on this forums boards or on any other forum of this nature.

 

As this topic seems to be in danger of doing an impression of a wooslum bird and disappearing up it's own rear end (i.e. what it was about is getting bogged down more and more in the mire of minutia) I think I'll bow out for now..

L&P

 

BD

[Unaltronome]

Hello again BD,

 

Most diagnosis are made by assessment of symptoms and/or tests that indicate the presence (or non-existence) of something or other within the body

 

Most diagnoses are indeed made by assessment of symptoms, which is biased! Biological tests are not standard for most 'diagnoses',eg. a GP would not send you to test if you have a cold!

 

The point I was highlighting is that throughout this thread you have made a lot of assumptions in your statements and opinions but requested concrete evidence when others have posted suggestions or opinions. You have come across antagonistic to posters that have experience in Home Education and yet it appears that your knowledge and choices about an education system are based upon a reputation of a school derived from opinions of a few parents with whom you interact. I believe Home Educators interact too. One poster recounted the very horrible experience her child had to endure through bullying but you felt it appropriate to make the statement previously quoted. Despite that you admit that bully/bullying is open to interpretation you're dismissive because you 'know' the attitude and the home background. The same poster paid you a compliment by saying you're are supportive towards your child and you repaid by saying that's an assumption based upon the flawed concept of 'parents know best' and that evidence on abuse suggests a parent doesn't understand their child. I had to question you on that particular point as it was unclear as to whether it was an attack on the poster or a confession? Now you have clarified that aspect, may I ask to clarify it further (in context to the original post)as to whether the evidence suggests that a disabled child is more at risk of been abused by their parent, in a class of 30 or in HE situation?

 

 

 

Anyway, to put forward an opinion in regard to your question (a far more interesting subject than semantics in my view)

I was just questioning whether those anomalies only exist within the autistic population, and if they do if that is also indicative as the root cause of non-response to sanction/reward strategies and if so whether that applies to all autistic people who have these dopamine anomalies or only some.

 

I hope you don't mind if I divide your question into 3 sections:

1) Dopamine anomalies. The dopamine per se would not alter. So research is based on different aspects of its pathway(s). From the dopamine transporter, its binding capacity, activation, synthesis and so on.

 

2) anomalies in the pathway only in autistic population. No. Anomalies are found across many conditions from depression to schizophrenia. Research is generally based observing a control group so as to exclude that the 'anomaly' is in fact just a normal variant within the population. For example, in one of the links I posted earlier http://www.ncbi.nlm.nih.gov/pubmed/1875489...pt=AbstractPlus

The research indicates that autistic children and non autistic children (in this sample) have the same 'binding' when it comes to the Dopamine transporter but they have different levels of binding of the serotonin transporter. Would it apply to all autistic children? To answer one would need to make a few assumptions or answer further questions: Do all children have the same type of 'autism'? Have they scored at the same levels on the same diagnostic tools, by the same people? Do they have all have the same quantifiable reduction in binding? Is the transporter anomalous or the quantity produced? If the transporter is anomalous, does the anomaly originate at the same point or elsewhere?

 

3)Sanction/reward response and dopamine pathway. The best research on this is in mice. Most of the research in this particular area involves trying to 'repair' a disabled system by means of adding drugs: Tryptophan,methionine, choline,glycine, flavinoids, vitB complexes,opiods/opiates.....And again it would depend as to the extent of the damage, the whereabouts.

 

 

In summary, there are indeed 'many ways to make a fruit salad'! I often wonder which recipe did I use for my son

 

 

 

 

 

[Unaltronome]

Hi my son Glen (14) ASD, is due to go back to School next Monday. I am personally dreading it. Since early November Glen's behaviour has changed, he has been constantly wetting at School, stripping off, exposing himself then just before the Christmas holiday started hitting out at Staff. Glen occasionally does these things at home but nothing like what he does at School. Glen clearly doesn't want to go to School even now, the 2nd week into the holiday he keeps saying every day 'School tomorrow' which means he doesn't want to go and needs to be reassured that it isn't School. Glen has very poor understanding and cannot tell you how he feels.

 

Various people are now getting involved, the E.P. is coming into see Glen on January 8th, I am also going to speak to the E.P., Outreach (Children's disability team) are also going to see Glen at School, plus a specialst doctor.

 

I just wondered if anyone else has experienced these type of behaviours in their children which have come on suddenly. The School say there has been no changes at School, they can't think of any reason why Glen is behaving the way he is.

 

If anyone can shed any light I would be extremely grateful.

 

Hello JeanneA,

 

Although I would certainly agree that puberty does not make easy for children and tend perhaps at times be more volatile and at times aggressive, I would be more propense to say that the wetting, stripping off is a sign of distress.

My experience in wetting, etc is though in regard to my 7 yo AS boy rather than in the teens and it was occurring as soon as we left the school and/or whilst falling asleep rather than in school. We eventually discovered the reasons to be a combination of his 1 to1 been taken away, the SENco had retired, the expectations in class were above his physical ability, the expectations in the dinner hall had changed and above all the bullying had escalated.

 

In the last couple of days I had a thought in regards to Glens behaviour and I might be clutching at straws but....even minor physical changes can make a difference to the sensory perceptions. When I was ~ 13yrs old my visual perception went 'funny' again and noises became painful again and I started to have a lot of headaches again for about a year. It certainly was irritating and weird but I was able to express myself. My eyesight and hearing were perfect. However, it has all started again in the last couple of yrs as my eye sight has deteriorated (only marginally). I honestly thought I had gone deaf too, but the audiologist says my hearing is perfect I just have to retune (learn to refocus). My dd (15) has found school rather more stressfull in the last year, I initially thought 'hormone', we recently found out to be she has Sensory integration dysfunction and mild motor dyskenesia. Just a thought as to why school might no longer (or temporarily) unappealing.

 

I hope it all goes well next week.

 

 

 

[baddad]

Hello again BD,

 

 

 

Most diagnoses are indeed made by assessment of symptoms, which is biased! Biological tests are not standard for most 'diagnoses',eg. a GP would not send you to test if you have a cold!

 

The point I was highlighting is that throughout this thread you have made a lot of assumptions in your statements and opinions but requested concrete evidence when others have posted suggestions or opinions.

 

Can you show me some examples, please, as i'm not sure I've made assumptions or requested concrete evidence. I've just highlighted assumptions being proposed as evidence within other people's posts. To make a statement about dopamine anomalies and to link that with non-responsive behaviours and then to link that to autism is something that demands qualification - see my red haired example... To say (i.e.) that my son's school has a good reputation shouldn't need qualification, because it's being put forward as an opinion not presented as evidence for a medical theory.

 

You have come across antagonistic to posters that have experience in Home Education and yet it appears that your knowledge and choices about an education system are based upon a reputation of a school derived from opinions of a few parents with whom you interact.

 

I have not been antagonistic to posters who have experience of home ed. That may be how you or even they have interpreted my posts, but it would be equally true to say that their posts could be interpreted as antagonistic towards me! I have in fact said repeatedly I have no personal issue with home ed and that in certain circumstances it may be the only viable solution. How is that antagonistic? My initial response was to a post that said 'Do you know you have a legal right to home ed?' which I thought was a partciularly single minded perspective/response to a request for thoughts about what might be causing problems for a child in school.

How on earth do you deduce that my knowledge and choices about an educational system are based on local and personal experience? You asked a specific question about my son's school, not a general one about the education system! This is why i mentioned the wooslum bird in my last post - internet 'discussions' tend to come down to this sort of pointless word play and nit-picking, and i really can't be bothered with it. The reason I've responded is because you've now moved on to very direct and personal accusations about things you say i've been doing which I haven't!

 

I believe Home Educators interact too. One poster recounted the very horrible experience her child had to endure through bullying but you felt it appropriate to make the statement previously quoted. Despite that you admit that bully/bullying is open to interpretation you're dismissive because you 'know' the attitude and the home background.

The same poster paid you a compliment by saying you're are supportive towards your child and you repaid by saying that's an assumption based upon the flawed concept of 'parents know best' and that evidence on abuse suggests a parent doesn't understand their child. I had to question you on that particular point as it was unclear as to whether it was an attack on the poster or a confession? Now you have clarified that aspect, may I ask to clarify it further (in context to the original post)as to whether the evidence suggests that a disabled child is more at risk of been abused by their parent, in a class of 30 or in HE situation?

 

You've misinterpreted my response as a personal one. My observations about bullying were not specific to this poster or anyone else. I was just highlighting that parental evidence is not necessarily reliable. i have no knowledge whatsoever of the posters personal situation and wouldn't dream of commenting on it. Neither was it a 'confession' - what are you suggesting here? I can't think of any other interpretation for 'confession' that isn't antagonistic or deliberate, but hey ho

For the sake of complete clarity - it was neither an attack on the poster nor a confession, and the suggestion of an either/or 'value' seems absurdly 'wooslumish'. As for your last question in the above paragraph - I haven't a clue! Have you? I suspect it would be a matter of interpretation again, but it has absolutely nothing to do with the original point I was making about parent's not automatically knowing what is best for their child. Statistics on abuse do show that some parents abuse children and that disabled children are more at risk from this type of abuse. That shows (to me at least) that parents don't automatically know what is best for their children (unless you consider abuse as 'the best'), but should not be taking to imply that I am suggesting any parent posting in this thread/on this forum is guilty of such an offence! If you're interested you can research those abuse statistics, if not, don't.

 

 

Anyway, to put forward an opinion in regard to your question (a far more interesting subject than semantics in my view)

 

 

I hope you don't mind if I divide your question into 3 sections:

1) Dopamine anomalies. The dopamine per se would not alter. So research is based on different aspects of its pathway(s). From the dopamine transporter, its binding capacity, activation, synthesis and so on.

 

2) anomalies in the pathway only in autistic population. No. Anomalies are found across many conditions from depression to schizophrenia. Research is generally based observing a control group so as to exclude that the 'anomaly' is in fact just a normal variant within the population. For example, in one of the links I posted earlier http://www.ncbi.nlm.nih.gov/pubmed/1875489...pt=AbstractPlus

The research indicates that autistic children and non autistic children (in this sample) have the same 'binding' when it comes to the Dopamine transporter but they have different levels of binding of the serotonin transporter. Would it apply to all autistic children? To answer one would need to make a few assumptions or answer further questions: Do all children have the same type of 'autism'? Have they scored at the same levels on the same diagnostic tools, by the same people? Do they have all have the same quantifiable reduction in binding? Is the transporter anomalous or the quantity produced? If the transporter is anomalous, does the anomaly originate at the same point or elsewhere?

 

3)Sanction/reward response and dopamine pathway. The best research on this is in mice. Most of the research in this particular area involves trying to 'repair' a disabled system by means of adding drugs: Tryptophan,methionine, choline,glycine, flavinoids, vitB complexes,opiods/opiates.....And again it would depend as to the extent of the damage, the whereabouts.

 

 

In summary, there are indeed 'many ways to make a fruit salad'! I often wonder which recipe did I use for my son

 

So the point I made was entirely valid - there is no clear evidence to indicate dopamine as a causitive factor for autistic children who do not respond to sanctions/reward systems, and no evidence pertaining to numbers who would be affected. My concern about these kinds of assumptions are that they get generalised to the point of being meaningless. If dopamine was found to be the case in 2% of such situations it would then be generalised to accommodate all of those children who don't respond for other, far more complex reasons. It would also become an excuse for not looking at those other factors realistically, or for parents/carers to dismiss them in their own minds because the implications for them are far more challenging than a medical 'label'.

 

L&P

 

BD

[Cat]

In summary there are indeed 'many ways to make a fruit salad'! I often wonder which recipe did I use for my son

 

Well I know for sure that I changed the recipe greatly with my youngest because he and his brother are poles apart with their autism and how it affects them. This really falls into line with the well known quote often written when someone is talking about those on the spectrum. The quote being that if you know one person with autism then you really only do know one person with autism. Having two sons with ASD has really brought that fact home to me.

 

So if autism really is a fruit salad, and there are more and more people who now believe that it is including some of our leading light professionals, then we will have to become flexible in our approach when someone is being diagnosed with the condition. The triad is far too rigid and in my own personal opinion is yet another little box system of diagnosis which does not fit all. I know that there are moves a-foot to have sensory issues included into the DSM 1V which I suppose is a start but the door is going to have to remain open and a lot of people are going to have to loose their rigidity and open their minds a great deal more if we are ever really going to understand this condition.

 

Nice to know that I am not alone with my thoughts though

 

Cat

Edited January 2, 2009 by Cat

[Karen A]

Hi my son Glen (14) ASD, is due to go back to School next Monday. I am personally dreading it. Since early November Glen's behaviour has changed, he has been constantly wetting at School, stripping off, exposing himself then just before the Christmas holiday started hitting out at Staff. Glen occasionally does these things at home but nothing like what he does at School. Glen clearly doesn't want to go to School even now, the 2nd week into the holiday he keeps saying every day 'School tomorrow' which means he doesn't want to go and needs to be reassured that it isn't School. Glen has very poor understanding and cannot tell you how he feels.

 

Various people are now getting involved, the E.P. is coming into see Glen on January 8th, I am also going to speak to the E.P., Outreach (Children's disability team) are also going to see Glen at School, plus a specialst doctor.

 

I just wondered if anyone else has experienced these type of behaviours in their children which have come on suddenly. The School say there has been no changes at School, they can't think of any reason why Glen is behaving the way he is.

 

If anyone can shed any light I would be extremely grateful.

 

Hi.I have been reading through the thread.I have some experience of having a very able elder son who became very unhappy in school a couple of years ago and was very stressed for a while.I know it is a different situation.However when J was stressed at school we ended up allowing him to stay at home due to the anxiety.J then found it more difficult to return to school and sorting out the situation became more difficult.

If there is no obvious major issue at school I wonder if it is worth attempting to get Glen back to school on Monday.It sounds as though Glen is in specialist provision and various people are involved.If the people mentioned get their heads together hopefully they may figure out what is causing the stress.If Glen finds that the routine changes and he does not return to school it may make return at a later point more difficult.

Please do push though to make sure that all of the people mentioned are aware that you are concerned.It could be that the specialist doctor finds that Glen has a minor infection or ailment that has caused him to feel unhappy....it is difficult if he has very limited ways of communicating what is wrong.Ben has AS so I do not have much personal experience.However I worked as a nurse in my past life.When older people become confused and distressed it is not unusual to find that they are unwell but cannot explain what is wrong.I hope a different pespective helps.....it may be that the difficulties Glen is having are nothing to do with school.Karen.

 

[JeanneA]

Thanks Karen, I do hope you are right but because I've had problems in the past involving School with Glen I do feel that the problem is definately a School one! It could be anything, something very minor that no-one is picking up on. One thing I have picked up on is the staff in Glen's class are not in that class all day, some go off to other classes even the teacher, I wonder if Glen needs to be around the same staff and not keep chopping and changing staff all the time.

[coolblue]

So the point I made was entirely valid - there is no clear evidence to indicate dopamine as a causitive factor for autistic children who do not respond to sanctions/reward systems, and no evidence pertaining to numbers who would be affected. My concern about these kinds of assumptions are that they get generalised to the point of being meaningless. If dopamine was found to be the case in 2% of such situations it would then be generalised to accommodate all of those children who don't respond for other, far more complex reasons. It would also become an excuse for not looking at those other factors realistically, or for parents/carers to dismiss them in their own minds because the implications for them are far more challenging than a medical 'label'.

 

 

Just wanted to come back on the dopamine issue, since I introduced it . Teachermum said a rewards/sanctions system worked for her son; I said that sanctions don't seem to have worked at all for mine and mentioned the dopamine system as a possible cause of this. Dopamine keeps coming up in research in reference to reinforcement, in reference to sleep, in reference to the effects of light, and in reference to mood (via serotonin), all of which are often relevant to people diagnosed with ASD and I thought it might be a point worth noting. Sometimes a chance remark by another parent has been a significant lead for me in getting the right support for my son. I don't think anyone is making assumptions or generalising about it. It may be that dopamine is implicated in 2% of children with autism, and in some children without autism. I am well aware that a model of autism as a unitary condition means that it could well be (wrongly) generalised to all children with such a diagnosis. I don't see that that is any worse than a relevant factor for a small number of children being ruled out for them because it isn't relevant to all.

 

For example, children with autism are not being routinely tested for gluten/casein intolerance because 'studies have been inconclusive'. The studies have also been very badly designed. Poor methodology and/or inconclusive results does not mean that a hypothesis can be rejected. This means that there are probably autistic children out there with gluten and/or casein intolerances who are not on appropriate diets because there's no evidence that gluten and/or casein 'causes' autism. They probably don't 'cause' autism. That doesn't mean kids with autism can't be gluten/casein intolerant.

[Cat]

For example, children with autism are not being routinely tested for gluten/casein intolerance because 'studies have been inconclusive'. The studies have also been very badly designed. Poor methodology and/or inconclusive results does not mean that a hypothesis can be rejected. This means that there are probably autistic children out there with gluten and/or casein intolerances who are not on appropriate diets because there's no evidence that gluten and/or casein 'causes' autism. They probably don't 'cause' autism. That doesn't mean kids with autism can't be gluten/casein intolerant.

 

I know some parents who swear by the gluten free - casein free diet and have had some astouding results. According to Paul Shattock this is because what we eat can affect the chemical balance in the brain which in turn can impact on many aspects of the way we are. If this is true, and I am a great supporter of Mr Shattock, why could dopamine not one of the factors that effect some children in.

 

In the same way that gluten and casein effect some of them but by no means all of them.

 

Cat

Edited January 2, 2009 by Cat

[JsMum]

Thanks Karen, I do hope you are right but because I've had problems in the past involving School with Glen I do feel that the problem is definately a School one! It could be anything, something very minor that no-one is picking up on. One thing I have picked up on is the staff in Glen's class are not in that class all day, some go off to other classes even the teacher, I wonder if Glen needs to be around the same staff and not keep chopping and changing staff all the time.

 

 

The changes in Teachers is a valid point, I would write down your concerns and send it to the Headteacher, Im sure your son will not be the only one experiencing these difficulties with people transition, my own son would be the same, he would be very anxious around regular adult changes in a day, even if it was one day a week, at primary school Js behaviour was considerably more challenging when a supply teacher or different year teacher took the class, especially if he wasnt prewarned, I guess its all about how settled they are in the first place with a consistant member of staff that will be a regular port of support, if they keep changing how is he expect to get to know the staff and build up a rapour.

 

I am pleased that you may of worked this one out and that something can be sorted out so he enjoys going back to school.

 

JsMum

 

 

 

[JeanneA]

Hi guys, well just to update you, Glen has started back School and no problems at all, he hasn't wetted, stripped etc or been aggressive, which I'm very pleased about although very suprised considering how he behaved the last 6-7 weeks of last term. Its early days of course, so I'm just taking one day at a time. The Ed.Pysc is coming in on Thursday and I am metting him to voice my concerns.

 

Hope all is going well for your kids at the start of the new term.