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bjay

Website you may like - from Barbara J

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I'm the author of Loving Mr Spock.

 

In the last three years, I've moved away from undiagnosed adults, following my meeting with a woman with 5 children diagnosed on the autistic spectrum, or with related conditions. She is diagnosed with ADHD with Asperger traits.

 

Her story, and her experiences, made me think more deeply about the ASC isssue, and education, and at the age of 61, I finally got round to doing my PhD, and decided to do it on ASC children, autistic intelligence, and how this can be recognised in inclusive education.

 

I'm now in my final year of this PhD, and am a Research Associate at the University of Leicester.

 

The mum I met, and I, have set up a website which can give you a glimpse into some of our findings. Please look at the Presentations! and anything else which catches your eye!

 

We welcome input, and welcome members who are invited to tell their own stories.

 

I hope you like it. Please give your feedback. Please add your voice.

 

www.jelibean.com

 

 

Barbara

x

 

 

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Just reading through the website now....very good and infomative .....

 

I particulary like this and may even print it, laminate and stick it to kitchen cupboard and also give to staff at son's school.

 

WHAT YOU CAN DO TO HELP - WITHIN THE FIRST 20 SECONDS

 

1. Speak to us and tell us firmly and in a single word that we are getting out of control.

 

2. DON'T TOUCH US!!!!!! Touch puts us into even more overload.

 

3. Don't give us a lecture - we can't HEAR.

 

4. Leave us alone, let US have the last word.

 

5. LET US RUN, if necessary, out of the door, upstairs to the bedroom or to lock ourselves in the bathroom.

 

6. When we emerge SAY NOTHING about it, ignore us when we reappear, we are probably a bit sulky still so let us be. We will communicate with YOU when we are ready.

 

WHAT CAN THE TEACHER IN THE CLASSROOM DO?

 

1 Don't Panic. Speak clearly and firmly - just one word is best.

 

2 Distract the jellybean with something that they are good at. SUBTLY

 

3 Remove the jellybean from the classroom with one adult to a quieter more private area.

 

4 Allow the child to STIM and don't crowd them, just be kind and keep them SAFE.

 

5 Allow the child to let off steam physically, allow them to RUN and run and run, the playground being preferable to the school car park.

 

6 Reassure and stay in the background. The child will wind down.

 

7 Don't threaten with anyone or anything.

 

Finally on Tsunamis, DON'T TOUCH. Unless you are invited to, try and avoid the temptation of hugging a distressed jellybean, even when you think its safe, it MAY NOT BE!

 

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Mmmm, sorry but I have some reservations about these points :(

 

Will go and look at the website and ponder a bit before I post more! :ph34r:

 

Bid :unsure:

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OK, wading in now! :ph34r:

 

I have AS myself, eldest DS does too, and DH is a senior teacher at a school for complex learning difficulties who also delivers autism training to mainstream schools.

 

First of all, and I realise this is just my personal taste, but I find the whole idea of 'jellybeans' and offering advice as though you are the autistic child speaking just too 'twee' and a bit patronising for me, sorry! :unsure:

 

Looking at the advice Stressedmum has reproduced here a number of things occur to me:

 

In the meltdown advice for home I would say the 'don't touch' only applies to some children. Some kids need and want firm touch. Also, being realistic, but there are some kids who won't leave a situation voluntarily so you're going to have to touch them! Plus, the idea of only talking about an incident when the child wants to...erm, no, this just sets you up for the child taking control and deciding whether they want to talk about issues they don't like. Some of our kids are absolute masters at prevarication and avoidance. I know it's probably unfashionable, but while I agree a parent needs understanding and sensitivity when dealing with kids like ours, they still have to be firmly in charge, and the kid needs to know this.

 

School advice: DH wondered how you might remove a kid in meltdown out of a classroom without necessarily touching them? And another point he raised was where is the idea of consequences for behaviour (e.g. social stories, etc)? An autistic child still has to learn what isn't acceptable behaviour, and without that expectation they aren't being 'enabled' by support, but rather further 'disabled' by collusion.

 

Right, running off to hide now as I realise I will probably be out on a limb again! :rolleyes:

 

 

Bid :ph34r:

Edited by bid

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Hi, All the above points work really well with my DS, I agree Bid about the consequenses though,The system I have come up with is that he has 50p a day, with a �2.oo bonus at the end of the week if all goes well, he also gets money for getting in and out of taxi at both ends and not doing a runner, and taking his meds when asked, at the end of the week, at a time when he is calm, we sit down and add it up, he loses money for damage, runners,etc so that is the consequence, not ideal but it works, I used to be able to take things off him but those days are gone so its the best I can come up with. Enid

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Hi, All the above points work really well with my DS, I agree Bid about the consequenses though,The system I have come up with is that he has 50p a day, with a �2.oo bonus at the end of the week if all goes well, he also gets money for getting in and out of taxi at both ends and not doing a runner, and taking his meds when asked, at the end of the week, at a time when he is calm, we sit down and add it up, he loses money for damage, runners,etc so that is the consequence, not ideal but it works, I used to be able to take things off him but those days are gone so its the best I can come up with. Enid

 

I have thought about this too. Giving money and possibly taking it off him in fines as consequences. Recently it was suggested that I remove Rs Game cube for 2 hours when he injures his sisters. I informed him beforehand and put a notice up to that effect. When I mentioned that the action (which he was about to commit) would result in the removal of his game cube he went absolutely wild. I am back to square one. As R likes to go to the shop and choose a comic at the weekends I think I might try the money thing. Trouble is, his little sis is like some sort of mini human rights lawyer and demands parity for herself and her younger sister (unbelievable!).

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Bid I'm not saying these points are for everyone to consider just that many of them would work much better with my child than many other approaches I have used and school have used in the past. If my son is in meltdown it is pointless me trying to get my point across to him, I need to wait till he has started to calm before he is able to listen and it is pointless me trying to hold him as this will then make him want to fight against me, I have used hold in a hug way and in a restraint way with my son and it didn't work but I do know what you are saying and that for some children who are out of control a gentle holding would be better and comforting for them as well as providing safety. I do not agree with all of the points but some of them I do plus I also think you have to take the individual child into account when using them, a one fit approach doesn't work and also something which didn't work when the child is 5 or 6 may work well when they are 9 or 10.

 

With regards to that site I also found that some of the techniques/ advice sheets they have written will work and be beneficial for autistic children for example traffic light system and the weather and communication information sheet. :thumbs:

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I had to go out after I posted, and it subsequently occured to me that I should have said that I thought some of the points were good! Sigh :shame:

 

Bid :)

Edited by bid

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Sorry Bjay -

I haven't actually looked at the site, but the points 1 to 6 that stressed mum to 2 copied and pasted are (IMO) pretty flawed. What is described is a child being given absolute control over their environment and all those within it for the duration of their 'meltdown' based on the assumption that they 'can't help it' or are 'out of control'...

While that may be the case, the simple fact is this is exactly the same condition that a two year old having a tantrum is in - 'can't help it/out of control' - would you prescribe the same response with a two year old?

What about an aggressive adult beating his wife/kids? Generally the excuse they offer after the event is 'can't help it/I was out of control' Does that make it acceptable?

If the child is 'out of control' then the onus must be on the adult to take control of the situation for them... while that may include some of the other strategies you outline (and certainly not 'crowding' them at such times is a useful/sensible technique and enabling them to take time out) these should always be directed by the adult - not the child.

There are millions of adults out there (autistic and NT) who believe that saying 'sorry' after the event negates responsibility for inflicting harm/distress on other people, and millions of people who live in fear of hearing 'sorry' again. For some reason, parents of autistic children (or kids with ADHD/Dyspraxia/Dyslexia etc etc) seem completely unwilling to accept that these aspects of their own children's behaviour are perfectly normal human behaviours (but prove very accommodating of the idea that non-autistic children displaying the same behaviours are 'bullies' or the result of bad parenting). While there may be complications arising from the diagnosis these behaviours are not PART of the diagnosis and are in no way exclusive to the diagnosis.

Children should not dictate the consequences of any problematic behaviour by threatening further problematic behaviour - which is exactly what is being described in your final point and in the post made by Peaches, who is 'back to square one' not because she did follow through on a consequence but because she didn't. When she backed off because her son went wild he dictated his own 'consequence', which appears from the above to be nothing while peaches considers her next strategy.

 

A child at two having a tantrum needs someone to define boundaries for him/her until he or she develops the social awareness and skills to enable him/her to do so for themself. So does a child of twelve - the only difference is the twelve year old's tantrum has a far bigger impact on those trying to resolve it, and far bigger (social) consequences for them.

Children whose problems are 'helped' by the kind of responses you detail above have not responded to the softly softly programme - they've just developed the understanding about boundaries. While they've done so, they've held their families to ransom. Children who grow up in an environment where the boundaries/consequences are clearly defined will (probably) develop that understanding faster, but their behaviour will have been less limiting on those around them who have refused to 'pay' the ransom demands.

 

:D

Edited by baddad

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OK, wading in now! :ph34r:

 

I have AS myself, eldest DS does too, and DH is a senior teacher at a school for complex learning difficulties who also delivers autism training to mainstream schools.

 

First of all, and I realise this is just my personal taste, but I find the whole idea of 'jellybeans' and offering advice as though you are the autistic child speaking just too 'twee' and a bit patronising for me, sorry! :unsure:

 

Looking at the advice Stressedmum has reproduced here a number of things occur to me:

 

In the meltdown advice for home I would say the 'don't touch' only applies to some children. Some kids need and want firm touch. Also, being realistic, but there are some kids who won't leave a situation voluntarily so you're going to have to touch them! Plus, the idea of only talking about an incident when the child wants to...erm, no, this just sets you up for the child taking control and deciding whether they want to talk about issues they don't like. Some of our kids are absolute masters at prevarication and avoidance. I know it's probably unfashionable, but while I agree a parent needs understanding and sensitivity when dealing with kids like ours, they still have to be firmly in charge, and the kid needs to know this.

 

School advice: DH wondered how you might remove a kid in meltdown out of a classroom without necessarily touching them? And another point he raised was where is the idea of consequences for behaviour (e.g. social stories, etc)? An autistic child still has to learn what isn't acceptable behaviour, and without that expectation they aren't being 'enabled' by support, but rather further 'disabled' by collusion.

 

Right, running off to hide now as I realise I will probably be out on a limb again! :rolleyes:

 

 

Bid :ph34r:

 

:thumbs::thumbs: No not out on a limb alone.I will join you wherever you are hiding. :) Agree with all the points you have made Bid.Karen.

 

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:thumbs::thumbs: No not out on a limb alone.I will join you wherever you are hiding. :) Agree with all the points you have made Bid.Karen.

 

Phew!! :lol:

 

And thank you BD for articulating what my sleep-deprived brain couldn't last night! :)

 

That said, I do agree with speaking in simple language and non-threatening body language.

 

Bid :)

Edited by bid

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I think that, given the diversity of autism and of autistic people, you have to pick and choose from the advice available and use what is appropriate to your particular situation. As an adult with AS, I would certainly like the people around me to trust me to know when I need to get out of a situation, when I need to be left alone, when I am able to discuss it, etc.

 

That list of things to do in the first 20 seconds of a meltdown might not be a good long-term strategy for dealing with meltdowns, but could be well be helpful IN THE FIRST 20 SECONDS, especially if you can catch it before it descends to a serious level - for example, if you could tell a child is becoming overloaded, you may well be able to escort them from the classroom without needing to touch them BEFORE they get to the kicking and screaming stage. You would have to know the child really well in order to tell, so this particular advice may well be more appropriate for parents rather than teachers. I'm not convinced about #6, but maybe this is not the right time to be discussing it, maybe it is better to wait until the person can think about it more objectively.

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I think that, given the diversity of autism and of autistic people, you have to pick and choose from the advice available and use what is appropriate to your particular situation. As an adult with AS, I would certainly like the people around me to trust me to know when I need to get out of a situation, when I need to be left alone, when I am able to discuss it, etc.

 

Hi tally/ all :)

 

And there's the rub - the 'as an adult with AS' bit. As I've said, there's good sense in most of the points that have been raised, but only in a scenario where the 'actor' is an adult, or a child who has shown the degree of social understanding and self-control to manage their own needs effectively. If you're talking about occassional 'overloads' where people need to escape, calm down, rationalise and work through their feelings it's completely sensible advice.

In a scenario where the behaviours are frequent, dangerous to others/self, violent and destructive and/or the individual does not show any ability to self-manage the situation it is actually doing them an injustice not to take control for them.

Further to that, you have to have a scenario where the 'actor' is actually striving to take control of themselves, rather than the situation they find themselves in; that they are not using their behaviour to 'control' others. Nine times out of ten, with kids, it will be the latter - that's exactly what children do - it's the most fundamental part of human development: awareness of self. When you tell a child 'no' and he kicks you, or something happens at school and the child throws a chair across the room these are inappropriate responses to everyday frustrations - they are not 'meltdown' or 'overload', and if a child learns that he/she can enact these behaviours with little or no (real) consequence, or consequences delivered on his/her own terms then he/she will enact them - it's human nature.

The 'controls' you're talking about - the ability to self-manage - come with age and experience and understanding. That doesn't necessarily mean adulthood (go into any rough pub on a saturday night and you'll see plenty of adults who haven't learnt these lessons, and the liklihood that they are all in the throws of 'autistic meltdown' seem unlikely), but it does demand emotional maturity, social understanding and strong 'models' of what those two things mean in terms of interaction with others.

We learn by trial and error. Stick your fingers in an electric socket once and you'll probably not do it again. Eat something that makes you sick and you'll avoid it the next time you see it. Kick down a door, and have the whole room quietly divert all of it's attention to your needs on your terms and you'll kick down another door. React violently when someone makes you switch off your playstation and get an extra ten minutes, and the next time you're asked to switch it off you'll see the opportunity for another ten minutes of hot sonic action... You're a kid. What would you do for ten minutes of hot, sonic action? Apologise two hours later, on your terms and in your own time? No brainer, ennit! :lol:

 

:D

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Hi tally/ all :)

 

And there's the rub - the 'as an adult with AS' bit. As I've said, there's good sense in most of the points that have been raised, but only in a scenario where the 'actor' is an adult, or a child who has shown the degree of social understanding and self-control to manage their own needs effectively. If you're talking about occassional 'overloads' where people need to escape, calm down, rationalise and work through their feelings it's completely sensible advice.

In a scenario where the behaviours are frequent, dangerous to others/self, violent and destructive and/or the individual does not show any ability to self-manage the situation it is actually doing them an injustice not to take control for them.

Further to that, you have to have a scenario where the 'actor' is actually striving to take control of themselves, rather than the situation they find themselves in; that they are not using their behaviour to 'control' others. Nine times out of ten, with kids, it will be the latter - that's exactly what children do - it's the most fundamental part of human development: awareness of self. When you tell a child 'no' and he kicks you, or something happens at school and the child throws a chair across the room these are inappropriate responses to everyday frustrations - they are not 'meltdown' or 'overload', and if a child learns that he/she can enact these behaviours with little or no (real) consequence, or consequences delivered on his/her own terms then he/she will enact them - it's human nature.

The 'controls' you're talking about - the ability to self-manage - come with age and experience and understanding. That doesn't necessarily mean adulthood (go into any rough pub on a saturday night and you'll see plenty of adults who haven't learnt these lessons, and the liklihood that they are all in the throws of 'autistic meltdown' seem unlikely), but it does demand emotional maturity, social understanding and strong 'models' of what those two things mean in terms of interaction with others.

We learn by trial and error. Stick your fingers in an electric socket once and you'll probably not do it again. Eat something that makes you sick and you'll avoid it the next time you see it. Kick down a door, and have the whole room quietly divert all of it's attention to your needs on your terms and you'll kick down another door. React violently when someone makes you switch off your playstation and get an extra ten minutes, and the next time you're asked to switch it off you'll see the opportunity for another ten minutes of hot sonic action... You're a kid. What would you do for ten minutes of hot, sonic action? Apologise two hours later, on your terms and in your own time? No brainer, ennit! :lol:

 

:D

 

>:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> ;):o Good to see there is life in the old ex mod yet BD. :D

 

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My DS is nearly all growed up now, but two pieces of advice always stuck with me from when he was little and literally bouncing off the walls :ph34r::tearful: From about the age of 6 until he was 8 his behaviour was so challenging that all I can remember is waking up each morning and only being able to think about how we would get through until bedtime. I really can't remember anything more about my family life during that time as his problems were so severe.

 

The specialist from Great Ormond Street who did his WISCs (Dr Mary Lobascher, an expert in dyspraxia which was his initial dx) told us that while we needed understanding and sensitivity when dealing with him, we must not collude with his behaviour.

 

And his consultant from the specialist diagnostic centre who gave the AS and ADHD dx said 'You have to remember you are the adult and you are in charge'.

 

Nothing happened overnight, it took at least three years of intensive behavioural therapy plus medication for his severe ADHD, but we kept those two pieces of advice as the foundation of how we tackled his challenging behaviour.

 

I firmly believe every child needs to know that their parents are in charge, end of...that doesn't mean that they don't listen, give choices or reflect on their parenting strategies, but the child needs to know where the buck stops. That's nothing special for spectrum children, it's the basis of positive parenting of all children. And just to make myself really unpopular ;) I also believe there needs to be a firm family routine in place underlying everything (set mealtimes, bedtimes, eating together, etc, etc).

 

We made gazillions of mistakes with my DS, that's par for the course of being a parent, and I wish there had been forums like this around in those days so that I could have found out when he was little about things like visual timetables, etc. But as an adult although my DS struggles with mental health problems, by and large his behaviour is kind, thoughtful and controlled. And I think that's due to realistic parenting with us 'in charge'.

 

I'm not trying to say we are perfect parents by any means, but from my experience, I would say that firm, adult-led intervention and high expectations of behaviour balanced by an understanding of the autistic imperative works well.

 

Budge up behind that sofa, Karen and BD! :lol:

 

Bid :ph34r:

Edited by bid

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I agree with you bid.

 

I had a quick look at the site to but had not seen that section.

 

Every child has to know that the parent/carer or teacher is in charge and learn respect and right and wrong, also they have to learn that their are consequences for their behaviour having autism is not an excuse for bad behaviour in my opinion.

 

 

 

I agree with not discussing anything mid meltdown, but when the child has calmed its up to the adult to decide when the child is ready to discuss this behaviour, what went wrong, when they can return to the class when in a school setting. what should happen next.

 

 

 

the part i looked at was the 'traffic lights' system, it may work for some children, but first the child must have an understanding of what red ambur and green actually stand for, to them they are just colours, many people see red as 'danger' and green as 'safe' but many kids will only see them as colours, even with a happy face on green and a sad face on red the system could be difficult to understand. But as i said it may work for some children. that was the only section i read and didn't look at anything else so their may be good strategies on the website.

 

 

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Thanks for your responses! That's EXACTLY what I was hoping for! I need to think and tweak and really do welcome others' points of view.

 

The advice for meltdowns was formulated with a team of adults on the spectrum. When they were talking about their meltdowns, and looking back at their own childhood and current experiences, the essential point was that the first 20 seconds was the important time. That's when the meltdown could be averted, if you could get to it in time. Not very long, I know! But as I listened it became clear to me (as I am epileptic) that meltdowns, and I'm talking about genuine ones here, involve an altered state of consciousness, almost identical to an epileptic seizure, particularly mine, as the focus of my seizures is my right temporal lobe, so I do get an aura, which lasts at least a minute, rather than the 20 seconds they described, and within that aura I can sometimes stave off the full tonic/clonic bit.

 

So I now say to parents to treat a meltdown as if it's an epileptic seizure, and deal with it as you would a seizure. And there's a secondary reason for saying this. Many on the spectrum DO also have epileptiform activity - up to 50% of them according to some research ( a bit exaggerated I think), although this may not express itself in full epilepsy, or may produce 'merely' complex partial seizures which are VERY difficult to recognise. This is what happened to Debi's youngest son, who was having occasional what we thought were meltdowns in school. A sleep-deprived EEG showed that he had epileptiform activity, and the neurologist decided that the meltdowns were in fact complex partial seizures, and put him on medication, since when he's been fine. There's a big difference between him just being naughty and throwing a wobbly, and when he was having a complex partial.

 

So that's why that advice is in there.

 

And as we say in the opening page, this is a mix and match, rather than a program. It's a mindset, rather than an instruction. Just take what you want from it if you like anything and find it helpful. No two children on the spectrum are alike. What works for one, may not work for another! :)

 

And yes, I know Debi's style isn't to everyone's taste. But then she's a jellybean herself! :)

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So I now say to parents to treat a meltdown as if it's an epileptic seizure, and deal with it as you would a seizure. And there's a secondary reason for saying this. Many on the spectrum DO also have epileptiform activity - up to 50% of them according to some research ( a bit exaggerated I think), although this may not express itself in full epilepsy, or may produce 'merely' complex partial seizures which are VERY difficult to recognise. This is what happened to Debi's youngest son, who was having occasional what we thought were meltdowns in school. A sleep-deprived EEG showed that he had epileptiform activity, and the neurologist decided that the meltdowns were in fact complex partial seizures, and put him on medication, since when he's been fine. There's a big difference between him just being naughty and throwing a wobbly, and when he was having a complex partial.

 

Hi bjay :)

 

I don't mean to come across as rude, but this seems as though you are taking your personal experience of epilepsy, coupling it with your friend's experience with her son's complex partials...and coming up with advice that tells parents to treat meltdowns as seizures :unsure:

 

I have a dx of AS, and coincidentally I work at a residential special school for severe epilepsy and other complex needs including autism, so I have personal and professional experience of both autism and epilepsy. When my son was young he certainly had episodes that were queried as epileptic activity, but the tests were negative, and as he got older it became clear they were an acute form of panic attack.

 

I also wonder if the research you mention about a link between autism and epilepsy refers to the greater incidence/prevalence of epilepsy in general among children with learning difficulties, including autism?

 

You also say:

 

The advice for meltdowns was formulated with a team of adults on the spectrum. When they were talking about their meltdowns, and looking back at their own childhood and current experiences...

 

I would link this back to BD's extremely cogent argument here:

 

And there's the rub - the 'as an adult with AS' bit. As I've said, there's good sense in most of the points that have been raised, but only in a scenario where the 'actor' is an adult, or a child who has shown the degree of social understanding and self-control to manage their own needs effectively. If you're talking about occassional 'overloads' where people need to escape, calm down, rationalise and work through their feelings it's completely sensible advice.

In a scenario where the behaviours are frequent, dangerous to others/self, violent and destructive and/or the individual does not show any ability to self-manage the situation it is actually doing them an injustice not to take control for them.

Further to that, you have to have a scenario where the 'actor' is actually striving to take control of themselves, rather than the situation they find themselves in; that they are not using their behaviour to 'control' others. Nine times out of ten, with kids, it will be the latter - that's exactly what children do - it's the most fundamental part of human development: awareness of self. When you tell a child 'no' and he kicks you, or something happens at school and the child throws a chair across the room these are inappropriate responses to everyday frustrations - they are not 'meltdown' or 'overload', and if a child learns that he/she can enact these behaviours with little or no (real) consequence, or consequences delivered on his/her own terms then he/she will enact them - it's human nature.

The 'controls' you're talking about - the ability to self-manage - come with age and experience and understanding.

 

Bid :)

Edited by bid

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But as I listened it became clear to me (as I am epileptic) that meltdowns, and I'm talking about genuine ones here, involve an altered state of consciousness, almost identical to an epileptic seizure, particularly mine, as the focus of my seizures is my right temporal lobe, so I do get an aura, which lasts at least a minute, rather than the 20 seconds they described, and within that aura I can sometimes stave off the full tonic/clonic bit.

 

Sorry to come back again, bjay :)

 

Has there been any research to show that autistic meltdowns arise from abnormal electrical activity in the brain like an epileptic seizure?

 

Bid :)

Edited by bid

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Has there been any research to show that autistic meltdowns arise from abnormal electrical activity in the brain like an eplieptic seizure?

I can only answer from my experience and what I've been told by consultants/doctors, but I have abnormal, epileptic-like electrical brain activity (dx-ed by repeated EEGs + well before my ASD dx) and I've been told this isn't part of what happens in meltdown (as I had queried it). However, if someone knows different, I'd be interested to read any articles.

 

I had a psychiatrist a couple of months ago who explained meltdown really clearly for me - he said it was like an electrical trip switch, but that in my case it was set too sensitively (to 'trip' on too low a current), so there is a level of sensory input, demands on me etc. at which I can cope but over this level without coping strategies leads very quickly and without apparent warning (although I've learnt to recognise the build up) to meltdown. At that point (to continue his analogy) the switch 'trips' and it is already too late (i.e. full-blown 'proper' meltdown).

 

I would question the 'first 20 seconds' as I'm not sure where this timing starts? If it's a 'proper' meltdown then it's an instant thing at the point of overload (I say 'proper' because I wonder if everyone talks about the same thing when they talk about meltdowns :unsure:) but the build-up (at least for me from my experience) can vary enormously from minutes to weeks and the progress/outcome is also dependent on a huge variety of factors. Where does the 20 seconds come into that? We have to cope with a certain level of things that may cause some discomfort because we're part of, and have to function in, the human world, so where, if you were to apply the 'first 20 seconds' strategies, do you start? Too early and you stop the individual from being allowed to function and exist (and learn to function and exist) as part of the world we are all part of, too late, and well, it's too late if it's a proper meltdown. I'm unsure how you apply '20 seconds' when we are all individuals?

 

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I think the best thing is to know the child well, then u know exactly what will set them off, also u will be able to see when they are ready to 'blow' and intervene with 'time out' in a quiet room or go for a walk with an adult, as a child gets older they will be able to sense themselves when they are 'simmering' but with most the adult will dictate when its time for some 'time out'. diff strategies will work in diff situation and with diff kids. distraction probably will not work as i feel its best to get out of the situation/area that is causing the difficulties.

 

of course not all meltdowns can be avoided so when one does happen:

 

1: stay calm

 

2: * make sure the child and anyone else around are safe.

* if not move child to a safe place this may mean u have to physically remove them.

 

3: allow time to cool off/calm down. give them space to do this (unless they need touch to feel secure or are self harming)

 

4: when things have calmed down adult will discuss what happend with the child.

 

5: the adult will decide when child can return to activity and what should happen next.

 

 

my advice may be rubbish as i am certainly not a proffesional and have no qualifications but this is just my opinion.

Edited by something_different

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I'll try to get as many replies in here as I can. Please remember I said 'treat a meltdown AS IF it were an epileptic seizure' and I gave two reasons for that. I did NOT say that it WAS, but there's a possibility that it MIGHT be, and that the immediate signs before a genuine meltdown are identical to those before a seizure.

 

Mumble, I'm talking about the moments BEFORE the ACTUAL meltdown. If you look at the site, Debi is very specific about the signs and symptoms of going into a real meltdown, and they're very similar to the signs and symptoms of an imminent seizure - clamminess etc. The actual build up can last for days, due to the problematic connectivity between the limbic system ( particularly the amygdala) and the pre-frontal cortex which means that the affective/cognitive/sensory problems can't be easily dealt with and decisions made about them as they arise. Tony Attwood, my good friend and PhD co-supervisor, calls this build-up in ASC 'lava layers'.

 

Bid - as far as I know there is no research to show that autistic meltdowns are caused by abnormal electrical activity,and I can't see the relevance of your question. Because that's not what I'm saying, is it? I am quite careful about what I say. :)

 

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Bid - as far as I know there is no research to show that autistic meltdowns are caused by abnormal electrical activity,and I can't see the relevance of your question. Because that's not what I'm saying, is it? I am quite careful about what I say. :)

 

Well, because you have made a clear comparison between an autistic meltdown and an epileptic seizure:

 

But as I listened it became clear to me (as I am epileptic) that meltdowns, and I'm talking about genuine ones here, involve an altered state of consciousness, almost identical to an epileptic seizure...

 

So I was interested to know whether there was any research that showed a clear comparison between the origins of a meltdown and a seizure as it is quite a dramatic analogy you're making.

 

Bid :)

 

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Why is it dramatic? I'm sorry, I don't understand. What's dramatic about seizures? They are perfectly normal for the person experiencing them. They are merely neurological incidents.

 

Would it be easier if I said - 'a genuine meltdown is NOT a child-like tantrum, or rage (as Michael Rutter and other describe them) but a neurological incident involving a genetic difference in brain circuitry? Please don't judge them as intentional, any more than you would judge an epileptic seizure as intentional'. Is that better? :)

 

Daniel Dennett's Intentional Stance has a lot to answer for! :)

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Why is it dramatic? I'm sorry, I don't understand. What's dramatic about seizures? They are perfectly normal for the person experiencing them. They are merely neurological incidents.

 

Would it be easier if I said - 'a genuine meltdown is NOT a child-like tantrum, or rage (as Michael Rutter and other describe them) but a neurological incident involving a genetic difference in brain circuitry? Please don't judge them as intentional, any more than you would judge an epileptic seizure as intentional'. Is that better? :)

 

Daniel Dennett's Intentional Stance has a lot to answer for! :)

 

As I have a dx of AS myself, plus a son with AS, ADHD and Dyspraxia, why on earth do you think I would 'judge' a meltdown as intentional??

 

And I'm sorry, but going into status or having an aspirated seizure and ending up in intensive care are hardly 'merely neurological incidents' for those with severe epilepsy.

 

Bid :)

Edited by bid

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Why is it dramatic? I'm sorry, I don't understand. What's dramatic about seizures? They are perfectly normal for the person experiencing them. They are merely neurological incidents.

 

Would it be easier if I said - 'a genuine meltdown is NOT a child-like tantrum, or rage (as Michael Rutter and other describe them) but a neurological incident involving a genetic difference in brain circuitry? Please don't judge them as intentional, any more than you would judge an epileptic seizure as intentional'. Is that better? :)

 

Daniel Dennett's Intentional Stance has a lot to answer for! :)

 

I don't think there's anything intentional about a melt-down. However, to say it isn't a rage is incorrect. I would describe it as a trully uncontrollable rage.

 

There is always a trigger for a melt-down. For me the trigger is never environmental, I would however say that maybe the liklihood of a melt-down is governed by environmental factors, but the trigger is nearly always something identifiable and specific (in my own experience), although I'm sure there are those who would say otherwise.

 

Flora

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Why is it dramatic? I'm sorry, I don't understand. What's dramatic about seizures? They are perfectly normal for the person experiencing them. They are merely neurological incidents.

 

Would it be easier if I said - 'a genuine meltdown is NOT a child-like tantrum, or rage (as Michael Rutter and other describe them) but a neurological incident involving a genetic difference in brain circuitry? Please don't judge them as intentional, any more than you would judge an epileptic seizure as intentional'. Is that better? :)

 

Daniel Dennett's Intentional Stance has a lot to answer for! :)

 

 

Hi Bjay -

 

TBH I'm a bit more confused now than I was after reading your initial post... I had noticed that you said 'Like', and therefore assumed that you meant the symptoms were alike. Now you've rephrased it you do seem to be saying that it's a physical phenomena, a 'neurological incident' as you put it.

So is there any research to indicate that the 'neurological incident' is a physical thing (electrical or whatever) and if so is there any research to indicate that if it is a physical thing this is exclusive to the autistic condition?

That again begs a second question: are you then saying (or if research shows) that this is exclusive to the autiustic condition then are all of those other non-autistic people i've highlighted in my posts (repeat wife beaters or others who have anger management/rage issues) are 'just having tantrums'?

What you seem to be suggesting is that autistic people should somehow be exempt from the usual expectations of self control and anger management because they are unable to help themselves when they 'melt down'...

I find the implications of that generalisation terrifying, because it's effectively marking autistic people as something 'other' and (at times of 'melt-down') as potentially dangerous. While that is, by your own definition a temporary form of insanity, I can't think of any other definition that fits the scenario you've described(?).

Again, you seem to be saying, in a nutshell, that autistic people can't help themselves. I think it's incredibly dangerous to proceed in rearing a child with that kind of attitude and with that kind of lack of expectation, and I believe that if you did you would find you'd created a self-fulfilling prophecy.

Some people, autistic or otherwise, may never have the self control/awareness/understanding to manage their anger effectively. Some people, autistic or otherwise, may never feel they need to manage their anger effectively (as i said, go in any rough pub on a Friday night). Yes, we should do everything we can to help such people and to accommodate them within society wherever and whenever we can do so without it impacting significantly on others. What we should not do is apply labels like that to whole groups of the population because it's a convenient excuse for us or them.

Finally, how would you define a 'genuine' meltdown, and what advice would you offer to parents having to make a split second judgement about what is a 'genuine' meltdown and what is 'tantrum'? Obviously both need to be responded to very differently - one with an expectation of self management and with firm boundaries/consequences and one where the 'meltdowner' is given complete free reign. should a parent proceed on the assumption that all are meltdowns (and therefore provide the circumstances for the child to completely control their environment and all within it) or work on the assumption that theiy're tantrums until proven otherwise?

Sorry - loads of questions there... If i had to pick a couple, the ones I'd really like to know answers to are:

So is there any research to indicate that the 'neurological incident' is a physical thing (electrical or whatever) and if so is there any research to indicate that if it is a physical thing this is exclusive to the autistic condition?

:D

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Hi Bjay -

 

TBH I'm a bit more confused now than I was after reading your initial post... I had noticed that you said 'Like', and therefore assumed that you meant the symptoms were alike. Now you've rephrased it you do seem to be saying that it's a physical phenomena, a 'neurological incident' as you put it.

So is there any research to indicate that the 'neurological incident' is a physical thing (electrical or whatever) and if so is there any research to indicate that if it is a physical thing this is exclusive to the autistic condition?

That again begs a second question: are you then saying (or if research shows) that this is exclusive to the autiustic condition then are all of those other non-autistic people i've highlighted in my posts (repeat wife beaters or others who have anger management/rage issues) are 'just having tantrums'?

What you seem to be suggesting is that autistic people should somehow be exempt from the usual expectations of self control and anger management because they are unable to help themselves when they 'melt down'...

I find the implications of that generalisation terrifying, because it's effectively marking autistic people as something 'other' and (at times of 'melt-down') as potentially dangerous. While that is, by your own definition a temporary form of insanity, I can't think of any other definition that fits the scenario you've described(?).

Again, you seem to be saying, in a nutshell, that autistic people can't help themselves. I think it's incredibly dangerous to proceed in rearing a child with that kind of attitude and with that kind of lack of expectation, and I believe that if you did you would find you'd created a self-fulfilling prophecy.

Some people, autistic or otherwise, may never have the self control/awareness/understanding to manage their anger effectively. Some people, autistic or otherwise, may never feel they need to manage their anger effectively (as i said, go in any rough pub on a Friday night). Yes, we should do everything we can to help such people and to accommodate them within society wherever and whenever we can do so without it impacting significantly on others. What we should not do is apply labels like that to whole groups of the population because it's a convenient excuse for us or them.

Finally, how would you define a 'genuine' meltdown, and what advice would you offer to parents having to make a split second judgement about what is a 'genuine' meltdown and what is 'tantrum'? Obviously both need to be responded to very differently - one with an expectation of self management and with firm boundaries/consequences and one where the 'meltdowner' is given complete free reign. should a parent proceed on the assumption that all are meltdowns (and therefore provide the circumstances for the child to completely control their environment and all within it) or work on the assumption that theiy're tantrums until proven otherwise?

Sorry - loads of questions there... If i had to pick a couple, the ones I'd really like to know answers to are:

So is there any research to indicate that the 'neurological incident' is a physical thing (electrical or whatever) and if so is there any research to indicate that if it is a physical thing this is exclusive to the autistic condition?

:D

 

 

Perhaps you and Bid could really try to be rather less literal and definitive and selective in your reading. I know this may be difficult for you to do, and I do understand.

 

I've said all I want to say on this issue, and everything is contained within my posts and the website. If you have a genuine question about neuroscience, or ASCs don't hesitate to ask. And if I can't come up with the answer myself, I'll ask Tony, and pass his answer on to you.

 

If you're asking whether a neurological incident is a physical thing, that sounds as if you don't know much about what the brain is and does. I'm sure that's not true. The 'electrical' explanation for neurology is rather old-fashioned. The issue with ASCs is that local processing is preferred over global processing, because of under- and over-connectivity in different brain domains. Matthew Belmonte, another good friend of mine, has written clearly about this. Read and enjoy. He is a superb researcher and a polymath for whom I have the greatest respect. He worked at ARC with sbc.

 

:)

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Perhaps you and Bid could really try to be rather less literal and definitive and selective in your reading. I know this may be difficult for you to do, and I do understand.

 

I've said all I want to say on this issue, and everything is contained within my posts and the website. If you have a genuine question about neuroscience, or ASCs don't hesitate to ask. And if I can't come up with the answer myself, I'll ask Tony, and pass his answer on to you.

 

If you're asking whether a neurological incident is a physical thing, that sounds as if you don't know much about what the brain is and does. I'm sure that's not true. The 'electrical' explanation for neurology is rather old-fashioned. The issue with ASCs is that local processing is preferred over global processing, because of under- and over-connectivity in different brain domains. Matthew Belmonte, another good friend of mine, has written clearly about this. Read and enjoy. He is a superb researcher and a polymath for whom I have the greatest respect. He worked at ARC with sbc.

 

:)

 

How rude and patronising :(

 

You asked for feedback about your site. Why are you suggesting that our questions aren't genuine?

 

Bid :(

 

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Perhaps you and Bid could really try to be rather less literal and definitive and selective in your reading. I know this may be difficult for you to do, and I do understand.

 

I've said all I want to say on this issue, and everything is contained within my posts and the website. If you have a genuine question about neuroscience, or ASCs don't hesitate to ask. And if I can't come up with the answer myself, I'll ask Tony, and pass his answer on to you.

 

bjay,

 

There's no need to back off and respond in a defensive and patronising manner because some people are questioning what you say. Presumably you posted details of your site because you were interested in honest and intelligent feedback, well now you have it. The questions Bid and Baddad posed are, I'm sure, genuine and I'm sure several people, myself included, are interested in the answers. I don't have ASD, by the way.

 

Kathryn

Edited by Kathryn

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How rude and patronising :(

 

You asked for feedback about your site. Why are you suggesting that our questions aren't genuine?

 

Bid :(

 

I'm sure your questions are genuine, and I hope I've given genuine answers. If you don't believe I have then I am very sorry.

 

I am truly grateful for your feedback, which is very useful.

 

Thank you.

 

:)

 

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Bjay,

 

So is there any research to indicate that the 'neurological incident' is a physical thing (electrical or whatever) and if so is there any research to indicate that if it is a physical thing this is exclusive to the autistic condition?

 

What's your answer to this please?

 

:)

 

K x

 

 

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Well, i'll second bid with the rude/patronising :rolleyes:

Cutting to the quick - you obviously enjoy name dropping regarding you're highly esteemed friends... perhaps one of them could answer what I thought were a couple of very straightforward and reasonable questions:

 

1 - Is there any actual evidence that 'autistic meltdown' differs from the kind of 'rage' that overtakes neurotypical people when they are deemed 'out of control' (i.e. in a state of 'diminished responsibility)

2 - If there is any evidence to that effect is there also evidence that whatever factors are evident in 'meltdown' only occur within the autistic population?

(that's not the same question twice, BTW, if you read it properly)

 

Sorry if your 'jellybean' sensibilities are challenged by those questions, but they are legitimate questions, given the sweeping generalisations you've made about autistic people on a support forum for autistic people.

Just out of interest, why do you assume that 'it might be difficult for' me and what do you 'understand' about me? - or have you made some assumptions about me that you have neither personal knowledge or evidence to support. Have you diagnosed me in some way, on the basis of a couple of posts I've made?

If you do not see the dangers of what you suggest (if this attitude prevailed I can imagine a future where courts of law introduce a new type of plea: 'How do you plead? Guilty, not guilty or autistic?') I really think you need to stop looking into at neurological research and start looking at social responses/media representation of marginalised and negatively perceived minorities.

 

:)

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I'm sure your questions are genuine, and I hope I've given genuine answers. If you don't believe I have then I am very sorry.

 

Then why did you say:

 

If you have a genuine question about neuroscience, or ASCs don't hesitate to ask.

 

It seems to me that you have come here advertising your website (which if I'm correct includes 'presentations' that you and your colleague are hoping to offer to groups) and then behave in an extremely patronising manner to someone who has AS presumably because I have asked some 'challenging' questions!! Classic comment...

 

I know this may be difficult for you to do, and I do understand.

 

:wallbash:

 

Bid :(

Edited by bid

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Perhaps you and Bid could really try to be rather less literal and definitive and selective in your reading. I know this may be difficult for you to do, and I do understand.

 

I've said all I want to say on this issue, and everything is contained within my posts and the website. If you have a genuine question about neuroscience, or ASCs don't hesitate to ask. And if I can't come up with the answer myself, I'll ask Tony, and pass his answer on to you.

 

If you're asking whether a neurological incident is a physical thing, that sounds as if you don't know much about what the brain is and does. I'm sure that's not true.

:o I'm quite shocked by this. This contains assumptions about various members which are quite, whether intentional or not, patronising and derogatory. In turn, they could easily be viewed as such towards people with ASDs (sorry, personal preference but I hate the term ASCs). I'm also a PhD student and if I'm sure that such talking down contravenes ethical standards for research - please don't stereotype me or anyone else as we are all individuals first and foremost.

 

I was quite enjoying the debate and interested in the issues raised in this thread so I'm disappointed by this response particularly as you place yourself among the 'experts'. Threads which touch on issues of neuroscience often become heated/involve stronger opinions than other threads (if you do a search you will find others) for a number of reasons: they are something we don't know everything about and so are based on speculation and often differing opinions (which are good for debate), they often deal with uncomfortable issues and many people (particularly on forums such as this) have first hand experience with the issues discussed and so will draw on personal experience.

 

You've said in one of your posts that the guidelines on meltdowns come from talking to a group of adults on the autistic spectrum, but it needs to be remembered that we are all individuals so will have different experiences. It is those that I and others have used in giving our opinions. There are a number of issues raised that are very interesting and I think people were asking for clarity on, specifically: what published research (rather than anecdotal evidence) do you draw on in talking about, for want of a better phrase, pre-meltdown symptoms? (Can you give us a link to something as I, and I'm sure others, would find this useful as I'm working on understanding my warning signs) and, similarly, is there any published research on levels of consciousness during meltdown - have there been any neurological studies on this? (I don't know of any, but I think it would be fascinating).

 

I finally got round to doing my PhD, and decided to do it on ASC children, autistic intelligence, and how this can be recognised in inclusive education.

Could you explain what 'autistic intelligence' is please? I read this on the website and wasn't familiar with the term.

 

 

And I'm not sure if it's the sort of feedback you wanted, but the terms 'Jellybean' and 'Marshmallow' really grated with me. ASDs are not cute, "oh let's have a chuckle at what little Johnny did today" 'differences' that you grow out of - they are lifelong, potentially debilitating conditions that affect every aspect of every day of the individual throughout their life, albeit in individual ways. To me (personal opinion etc etc blah blah blah...) such terms (and even to an extent the use of ASC) are attempts (often by NTs) to feel more comfortable around discussing ASDs. It's similar I suppose to the way people use euphemisms or simply avoid talking about some medical conditions - a sort of, if we don't name it properly, it doesn't exist or isn't as bad. The trouble is, it (whatever the it is) is still very much there, and all not talking about does is make it harder to talk about when there is no option but to address it head on. I'm sorry if that seems overly harsh.

 

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I agree with bid and baddad.

 

I'm incenced by what I'm reading here. Although, I'm hardly surprised by any of it either.

 

Flora

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bjay,

 

There's no need to back off and respond in a defensive and patronising manner because some people are questioning what you say. Presumably you posted details of your site because you were interested in honest and intelligent feedback, well now you have it. The questions Bid and Baddad posed are, I'm sure, genuine and I'm sure several people, myself included, are interested in the answers. I don't have ASD, by the way.

 

Kathryn

 

I hope I haven't done that Kathryn, and I hope I've given true and genuine answers to the questions I've been asked. Can I just point out that baddad said he hadn't looked at the website, and it may really help if he does. :)

 

Other answers to questions raised are available on our links, which are to many research papers, and to other major sites.

 

Please Kathryn, don't accuse me of being patronising. I have come on to your site and revealed my epilepsy, without any pretense. What's patronising about that?

 

And what is patronising about Debi calling herself 'us' and 'we' when talking about the autistic spectrum on which she finds herself? It isn't 'twee', it's her. I didn't pick up on that comment, because I valued the input. I still value the input. But I have limited time, in all senses of that word.

 

I don't want to be stroked, I want fair comment, and genuine feedback which will help me create a website which will, like my book, and like my PhD, publicise and disseminate the words and thoughts of those on the spectrum, so that everyone can hear. As a life-long epileptic, I've had enough misunderstanding in my own life. And, it appears from some of these posts, I'm still coming in for it, aren't I? :)

 

Whatever.

 

Thank you.

 

:)

 

 

 

 

 

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