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Primine

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I am a psychology intern who has recently been charged with a research project to improve the functioning of early intervention and hopefully be able to apply a test project on select children within our centre following an ethics review. I am brainstorming areas that need development and improvement and would gladly hear any concerns you have with the current intervention program. (specifically I am trained with the IBI area of ABA) Thank you all kindly!

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is that the same as intensive interaction?

 

our LEA are using intensive interaction with children and adults with social communication difficulties - not just autism

 

Zemanski

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They are very similar, but intensive interaction is a more broad model which, yes, does allow for application to the general public who have learning needs due to being still at early stages of communication development. In my experience as soon as you start the practical application almost all models tend to float into the same line of delivery, so I feel they are ultimately the same, just different on paper.

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I have no experience of autism-specific early intervention programmes, but hi anyway, Primine. I wonder if perhaps you should do a poll about what interventions we/our children have received.

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my understanding, having had some but minimal training, of the plus of intensive interaction over other systems is that it is non-coersive, that is it takes the lead from the child and stops if the child shows signs that they don't wish to cooperate.

 

saw some good in-house video of it in use - I was pretty impressed at the sensitivity used in the approach. Two of the kids were kids I know so I had a pretty good grasp of what they could/liked to do and they were thoroughly enjoying the sessions.

 

Zemanski

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Somewhere else mrs q. :D

 

The best way to help me would be to let me know of any holes you see in the system, any problems you feel aren't addressed, any areas you have extreme difficulty finding research, things that just don't seem to work as well as they should, etc. I have 12 months to create an idea for research, get it approved by an ethics committee, apply it on the kids in an experimental condition, document my results and hopefully be published. There is such a wide range of topics however that I could really use some ideas, especially from the point of view of a parent, what needs to be remedied or improved.

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I having a few problems with my son reception teacher....as she has never had a statemented child before....let alone an autistic one

 

 

 

More systems start up for teacher to understand children with autism.

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Statemented? I'm not sure I understand what you mean... would this problem be in under trained staff implementing programming or under qualified staff creating programming or some other issue?

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So your issue is that the staff teacher was under trained? How do you think we can improve the understanding of the teacher for the non-educational and educational needs of the child prior to them meeting in the work environment? Would you like to see the teacher spend time with individual children before school starts? What is it specifically you don't think the teacher understands?

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Guest flutter

i have a prob with people accepting the there is issues ( espec teachers, even sen )

cos they not see they say does nto exist

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I totally agree - Mainstreme education is so behind with the treatment of SEN/ASD,

 

It was clear the the head teachers couldnt get past the concept of " The needs of the 29 other children outway the needs of the one"

 

 

In order to have any rights the child has to be statemented - and this seems to only happeneafter a fight from the parents -

 

This then becomes a legal document that the schools have to adhere to but - it still doesnt mean that they have the patience.

 

Many outbursts and issues within mainstreme could be avoided by teachers being able to recognise triggers and warning signs - and theres too much reacting to rather than sorting out..

 

 

My son is now in a very small class with speacialised training ( its actually a centre of ecellence for autism) but for the three yrs inmainstreme its been sheer hell - and it was only the fact that I was told the right words to say -

 

for example -

 

I had asked for years if there was anything we could do as parents - if we could initiate test for example - but because we didnt use the actual word statmenting - it was never actioned - the minute we used the right words - we were taken notice of - there is a shortage of knowledge in the begining stages and its only forums like this - that provide lifelines and support.

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Raelien: You feel that teachers are reacting to the problem behaviors rather than being proactive? Further you find that a child won't be taken seriously unless they are statemented? Also you don't know, and no one will tell you, how you can help?

 

Flutter: You find that teachers do not believe a behavior is present if they don't see it themselves? Are these common teachers or special needs teachers?

 

mrs q: You find that teachers are under qualified or under experienced, and unaware of the child?s personal needs?

 

All: Have you considered private treatment? And if so, how readily available is it, and what kind of government funding exists?

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Hi Primine and welcome, nice to have you here.My son is statemented and is in mainstream school he is 10 and has severe learning difficulties, dyslexia/ dyspraxia and ASD. We had private dx for dyslexia , and a private assessment regarding sensory integration and auditory integration.Also private eye assessments. My son has seen an educational physch once for an hour.The whole sector is under funded, my close friend has a partially sighted son at my sons school, the lea have a specialist worker who goes into school every 2 weeks to assess how he is getting on (he is also statemented of course ).My son has been on a waiting list for 18 mnths to see the autism worker. There seems to be very little expertise or funding about.

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Funding is a huge concern. As Lovaas' methods and results are being replicated there is more of a call for early ABA. No new funding is being created, but slowly funding is being sucked from other areas of health funding. More money is readily available in countries with free health care as they want to avoid supporting people on the spectrum from cradle to grave by reaching normal functioning within 4 or 5 years. Sadly that is a political and lobbyist concern, and is outside the power of your therapist workers. Trust me... waiting lists upset us too. We'd rather get the kids as soon as possible, and not have a list at all. I believe you should see funding skyrocket over the next 20 years, but it won't do your child much good I'm afraid. Keep fighting for your child until that money is there.

 

What is an lea?

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Primine,

 

they want to avoid supporting people on the spectrum from cradle to grave by reaching normal functioning within 4 or 5 years.

 

Yes, I agree. I believe this is the plan for the future.

 

LEA - Local Education Authority. There is a Jargon Buster, top right hand corner of the page.

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Here are some of the ideas that have been offered to me through different chat sites. Some of it may not make sense without formal training or understanding of ABA. They are geared more towards practical application than anything else so far:

 

Looking at PECs vs Signs: Under which conditions each should be used?

 

Looking at unattended fidgeting and self-stim: should we pause programing and intervene if fidgeting/self-stim is unattended?

 

Looking at conduct issues comorbid with autism: should we get parents more involved to increase secure attachment and increase trajectory?

 

Looking at how parents interact with the children when no IT is present: should we offer a brief training pack?

 

Looking at schedule thinning: during a wait program would it be more beneficial to offer competing stimuli or a new activity while waiting?

 

Looking at transitions: should we increase focus and use various methods to decrease problem behaviors that seem to arise or be strengthened?

 

Looking at deprivation and satiation: because children will satiate on food and toys should we use this to create more functional preferences?

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each child on the autistic spectrum has a different presentation with a different package of strengths and weaknesses, you cannot say this will work for all but need to create a flexible mix and match programme to suit each individual.

for example; Some kids require dietary intervention and a healthy bowel improves some children's lives and behaviour dramatically but not all children have these problems, why restrict the diet of a healthy child through unnecessary intervention?

 

Here are some of the ideas that have been offered to me through different chat sites. Some of it may not make sense without formal training or understanding of ABA. They are geared more towards practical application than anything else so far:

 

Looking at PECs vs Signs: Under which conditions each should be used?

 

be flexible and see what the child is most comfortable with, there is no reason that even verbal children should not find their communication improves with aids.

 

Looking at unattended fidgeting and self-stim: should we pause programing and intervene if fidgeting/self-stim is unattended?

 

if you reduce the stress within the environment than stimming often lessens. Stimming is a comforting activity that should not be taken from a child, to reduce stimming the child needs to be helped to feel comfortable doing other things. I don't see stimming as negative and feel too much effort is put into this area as it is an easy way to make an autistic child seem more normal. trying to prevent stimming often causes unnecessary anxiety in itself.

 

Looking at conduct issues comorbid with autism: should we get parents more involved to increase secure attachment and increase trajectory?

 

don't understand the question - you use different jargon from us and don't come with a jargon buster - sorry

 

Looking at how parents interact with the children when no IT is present: should we offer a brief training pack?

 

IT?

here it means Information Technology - computer studies

 

Looking at schedule thinning: during a wait program would it be more beneficial to offer competing stimuli or a new activity while waiting?

 

not sure what you mean here

 

Looking at transitions: should we increase focus and use various methods to decrease problem behaviors that seem to arise or be strengthened?

 

is this question about managing change?

 

Looking at deprivation and satiation: because children will satiate on food and toys should we use this to create more functional preferences?

 

are you talking about bribery here? if so - yes, absolutely. my AS kid is very focused on rewards, although they have to be very specific, but he understands delayed gratification and will actively work of his own free will to get something. This is a choice he makes. rewards should not be used as coersion - I am wary of the pavlov's dog response; if I use the toilet I will get a sweet, if I want a sweet I will go to the toilet - this is not positive learning and does not help a child build understanding.

 

 

my own take on intervention is that the main interventions need to be not about managing or modifying a child's behaviour but about managing the stress levels caused by environment, social physical and emotional. When the environment suits a child's needs then anxiety is reduced and behaviour usually improves

 

Com (13) was on the verge of being excluded from school(mainstream) last term, he was wrecking classrooms, assaulting staff and growling at people from under 'his' table for hours at a time .....

after lengthy negotiations with senior management we have managed to get the environment changed for him - no more tutor group with sarcastic teacher, dropped 2 of his 13 GCSE dubjects to do life and study skills (3 hours a week to relax), individual PE/OT to avoid stressful class/team PE lessons (and no more bullying in the changing rooms), cognitive behaviour therapy one hour a fortnight to help him recognise and manage emotions (first ASD specific input he has been offered in 5 years since diagnosis), social communication group twice a week, consistent support (no more than 3 LSAs - he had 7 or 8 last year and is face blind so didn't know they were), individual maths programme (AS level) and all staff had ASD specific training before this term started.

 

so far, in 3 weeks, we have had 2 meltdowns at home (previously at least one a day) and there has only been one in school and only one other serious incident (previously around 3 a day).

 

it's still early days but it's the best intervention I've seen so far

 

Zemanski

Edited by Zemanski

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I have to agree with Zemanski in that most of a childs behaviours will be as a result of extreme stress and anxiety when their enviornment is not meeting there needs.

 

Hands up here total honesty I am NOT a fan of ABA I find much of it down right cruel. You can teach a dog to jump through a hoop which is on fire, but will it understand why it is doing so? I am all for shared meanings and understandings. My children are just that children and I do not want them programming thank you very much.

 

Yes funding is a big issue and ABA costs mega bucks. Do we really need those mega bucks being spent in this way in our schools. There may be a place for ABA but it is not for every child with an ASD.

 

There are now adults in the USA who are suing their parents for for doing ABA on them while they were small. I am all for intervention for the correct reasons and not in a bid to make a child conform, or rid them of their autism.

 

Probably going to be shot at dawn now - sorry but it's the way that I feel. I often feel that professionals that pedal ABA come across to parents as people who have seen the light - that worries me.

 

Carole

Edited by carole

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So do I.

 

Primine, I'd liek you to read this and tell me what you think:http://www.sentex.net/~nexus23/naa_aba.html

 

You should also check your revisionist history; Lovaas has never been replicated and is currently not being replicated. The famous 1987 study used adversive reinforcement which became so unethical in ABA practice that laws were passed in California banning their use. Everywhere else quickly followed suit and adversives we are constantly reminded by groups of ABA promoters are no longer considered ethical practice(as if they were ethical before). So neither Lovaas' 1987 or it's early 90s follow up have been replicated.

 

The fact that he was a sadistic prick who liked wiring children up to car batteries seems to be overlooked by behaviourists as how these practices may have impaired the accuracy of the data collected has never been reviewed.

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Wow. Where to begin. Commentary on the article will be in SECTION 1, clarification on my possible points of research will be SECTION 2, so you can only read what you feel up to it.

 

SECTION 1

 

Let's start with that article. First and foremost, while well written and seemingly well researched (although I did not check sources) is trash. I almost stopped a couple paragraphs in, but figured I'd read it all and give you my points on where I feel it went wrong. The whole thing is written voicing opinion as fact, which is exactly a huge part of what it is condemning.

 

First of all I should clarify what I do. I am in Instruction Therapist (IT) working with early intervention. We typically work with children 25 hours a week, often in combination with preschools. It should also be noted that I work in Canada, and our service is entirely paid for by the government. While people are welcome to seek private services to avoid a waiting list, we are usually the first choice. I can't comment on ASAT because I have no knowledge of it. I am not sure if we are affiliated with it.

 

Our goal is not to extinguish autism. The fact that anyone could refer to it as a disease is disgusting. It is a developmental disorder. They simply haven?t learned some basic skills. That can?t be fixed. They have trouble learning. Our job is not to make them normal. It is to increase their mental trajectory, their own ability to learn. We do this by teaching attention skills and then generalizing them across situations. When they start seeing things and understanding they don?t need us anymore. They can learn on their own.

 

WE DO NOT USE AVERSIVES. We are entirely reinforcement based and do not use punishment even in the most severe cases. Further we avoid all physical contact if possible (short of tickling and big hugs). We won't even use hand cupping anymore to get a child's attention because it is too invasive. (Cupping the child?s face to it will look forward)

 

Next: We always get informed consent. We take boundaries, confidentiality and privacy very seriously. We will not divulge any information to any person without a signed copy of a release form. Also we do nothing wrong. The parent is STRONGLY encouraged to watch the session, comment, regularly talk with supervisors, attend clinical team meetings, and we keep a daily journal of interesting events (which they must fill out daily as well). We also fill out government reports, are visited by supervisors, and make video tapes of sessions.

 

Basically our goal is to help these kids generalize basic communication skills so others can understand them, and then hopefully when they are attending their environment they can learn skills their own, more readily.

 

Initially our treatment is seen as robotizing children. That much is fair enough. But it is not forever. Once the child is responding, learning, we fade our prompts and then most importantly GENERALIZE. What good is knowing what a cow looks like if they don?t understand the concept of animals in general? We are constantly teaching, testing to make sure concepts are actually learned, then maintaining knowledge as best we can, and then using those new skills and concepts to learn others.

 

We don?t go near gender behaviors, norms or stereotypes in any way shape or form. I don?t know what that was about.

 

Of course the children communicate. It?s a matter of helping them communicate in a way that other people can understand. We start children usually at 2 or 3, and often nonverbal. We teach PECs or signing or vocal skills, whatever works best for the child. We can?t give them what they want if they can?t tell us what they want.

 

The article said that we dismantle autistic people into series of bizarre and inappropriate behaviors. No. At least I don?t think so. I?m not really sure what they mean. They should really give an operant definition. I mean we teach them what different sounds animals make, or more functionally, how to ask for (mand) for a snack.

 

As for Lovaas? the research is still new. It usually takes decades to work the bugs out of a study. And yes, there are current replications under different circumstances underway, without using aversives. It is my understanding (although I can?t site any here off the top of my head) that following reports accounting for many variables, including maturation, have been obtained with similar results.

 

I guess what is really important is that we don?t teach skills to messed up kids. We teach the ability to learn skills to kids who got a slow start.

 

SECTION 2

 

Often stress is an issue with our kids. We cannot create a stress free environment. We do our best to limit distracters, but it is hard. We work sometimes in the child?s home, sometimes in a playschool, sometimes in a centre. It varies. Each has its own problems. We hope that by teaching a child to manipulate their environment and functionally communicate they can avoid some stress.

 

We do tailor each set of programs to each child. Every IT is given a �primary� with who they are in charge of creating programming (based on ABLS) for that child. These ideas for research are to find gaps in existing methods, and improve areas that are weak.

 

Looking at PECs vs Signs: Under which conditions each should be used?

 

we do look at what works best for the child, but often a vocal child may respond better to signing, or a PEC. Combinations however, generally do not work because the child is overwhelmed with two conflicting systems. To create a better, but not set in stone, criteria for generally where to start would decrease the immediate demand for a language specialist because specialists tend to be very busy and have long waiting lists, and they can be costly.

 

Looking at unattended fidgeting and self-stim: should we pause programing and intervene if fidgeting/self-stim is unattended?

 

we often can?t control the stress the child feels. We try to make them comfortable. Most of the time we are just playing with them. The stimming will hinder the learning process if they are attending it. We also stop stimming, however, even if the child is attending the instruction. I think this is because (I AM NOT SURE ON THIS) so that their peers in school (remember these kids are 4 and 5 when kids are very judgmental and blunt) are less discriminating. I too believe that this may not be right and would like to study if it actually is beneficial to stop the stimming.

 

Looking at conduct issues comorbid with autism: should we get parents more involved to increase secure attachment and increase trajectory?

 

Children display less problem behaviors and learn at a faster rate if they have a �secure attachment� (healthy relationship) with the parents. I would look for ways to improve this relationship.

 

Looking at how parents interact with the children when no IT is present: should we offer a brief training pack?

If parents better understood exactly what and why we do the things we do in a program (often they are scared to ask, especially if it works) would they be willing to do it on their own?

 

Looking at schedule thinning: during a wait program would it be more beneficial to offer competing stimuli or a new activity while waiting?

 

Children must learn to wait. Patience even for 5 seconds is essential in the �real world� and we are trying to create skills that will generalize to home and to every day living. Recent research is finding that if you offer a child an activity while waiting the child will more readily wait longer periods, with less disturbance.

 

Looking at transitions: should we increase focus and use various methods to decrease problem behaviors that seem to arise or be strengthened?

 

If a kids likes playing with a toy and it is time for school or church, how can you make them go if they don?t want to? This is a transition and a couple new methods are arising to decrease pouting and tantrums in these transitions.

 

Looking at deprivation and satiation: because children will satiate on food and toys should we use this to create more functional preferences?

 

It?s not bribery, it?s reinforcement. Very ethical. But often we use food and toys, which are not always available in every day situations. If we used pairing to transfer a preference from a toy or food to a favorite shirt or piece of jewelry would that be more beneficial?

 

I hope that clarified it some. And I see that there is a inherit distaste for ABA among your particular forum. I am glad to see you are all still keeping an open mind. I don?t know if it is because of the age difference or the difference in severity, but a lot of what you describe I myself have not experienced. I hope you can also keep in mind that we are doing the very best we can. I am still open to any and all comments.

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Why are some professionals so 'anti-stim'????

 

I have many AS qualities and I have stimmed all my life (although I didn't know it was called that until recently :lol: ).

 

It is part of who you are, and not a particularly conscious thing...I often realise I'm stimming, but I never think 'Ooh, I think I'll have a little stim, now!'

 

(by the way...it's only my toes and fingers!! :lol: )

 

Bid :wacko:

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Canada - isn't that the Country whose National Orginisation does not allow anyone with autism to be included?

 

No Autistics Allowed - here is the link

 

http://www.sentex.net/~nexus23/naa_js.html

 

So it is not surprising that their Government is funding your programmes is it?

 

I find it all very distasteful, not ethical, you can go for shared meanings and understandings from the very begining without robotising or programming a child, who clearly does not understand why it is being made to do something totally alien to it. The issue is that autism is underfunded globally and so there are orginisations who have seen the glitch in the system and used the desperation of parents to profit.

 

And actually ABA is seldom talked about on this forum but there are others where you would find the views very outspoken.

 

Carole

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I can also point out huge swatches of research in ABA-Autism and denounce it as opinion dressed up as fact. In fact, consistent science is actually few and far between. But you still didn't discuss anything specific about the article, opting instead to dismiss it altogether. I still don't know if you believe it's ok to sideline ethical standards just as long as it's ok with the parents(So Kit Weintrub can continue to lock her children in dark cupboards as 'time-out'). The response from many ABA promoters was just as typical, unable to pick out the work, they resorted to personal attacks against the author. You can find a record of that and the Autistic community's own response at Autistics.org .

 

Lovaas 1987 study can not be replicated because it used adversives and adversives are now not used(except at that quiet place in middle America using cattle prods on adults which the ABA promoters like to keep quiet about). In the case of Lovaas it is not actually taking decades to work out the bugs, they've pretty much all been uncovered(the two Rett's girls was what we call 'a biggie'. Should people who can't tell the difference between Rett's and Autism really be doing work with either?), what WILL take decades is for Lovaas and the behavioural community to see them as flaws. That won't happen though until the ABA gravy train stops.

 

There is something I find really worrying with those from across the pond working in Autism; when they offend Autistic people, they don't recognise specifically what their mistake was: they just swap around a few words until everything's peachy. If they are the type who stigmatises Autistics, they simply seperate Autism from the person by calling us 'people WITH Autism'(as if it's Drop Dead Fred following me about), so in their minds they are no longer stigmatising a group of people. Here the solution has been to say 'it's not a disease, it's a developmental disorder!' and state that we simply haven't learned some basic skills.

 

The problem here is that behaviourists don't care WHY learning seems to go slow for many, cognition is something they keep well away from and pretty much can't understand it unless there's a behavioural translation on hand. Lovaas' actually missed some pretty obvious examples of Autistic learning because he, just like many other behaviourists assumed it didn't exist(it's often mis-labeled as 'self-stimulatory behaviour'). They assumed Autistics had Neurotypical learning, it was just stunted. If you follow that link all the way to the bottom you can speak directly to Michelle Dawson who can explain more on this.

 

Bid, professionals are so anti-stim thanks to messr Lovaas, who claimed that stims were anethema to learning, even calling obvious examples of non-reinforced learning self-stimulation, he didn't like to think an Autistic child could learn without his help or unless he taught them to 'learn how to learn'. The fact is that Autistics learn naturally implicitly, but implicit learning is impaired by the kind of learning ABA enforces. You can't teach implicit learning with operant conditioning, but it's the natural way Autistics learn.

 

Carole,

 

Autism Society Canada has 'token Autistics' who are anonymous, so Canadian Autistics don't know who is speaking for them. Many Autism societies have feigned a want of being inclusive and understanding but their actions speak louder. Many have said they sought out Autistic adults to speak at conferences and such, but the ones they found said they had no interest and just wanted to get on with their lives, so they then declare "Look, it's not us keeping you away; you're just not wanting to come along!". But if Jim Sinclair and other Autistics who have attended these conferences are anything to go by: the actual experiences they have at these hate-rallys are plenty reason to stay away. They often don't recognise the specific needs of Autistic people, despite many parents dragging their Autistic children along to these noisy, crowded and disturbing places. They hardly ever provide a quiet room with a non-flourescent light and comfy chairs where the Autistics can go if they are overwhelmed.

 

The Autism societies show an amazing amount of disregard for those they claim to be the voices for.

Edited by Lucas

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Guest flutter

I luv my daughter, no matter what she does,

where do you see the child and where do you see the " not wanted behaviour"

the only problem i ever have with her is if she is under stress.

AND we can all throw things when frustrated, or upset, so why should she ( even with sen ) be any different

I am not into forcing her to be someone she is not!

we are all different, and need to accept that!

The kids dont need changin its the rest of the world!!!!!!!

:wallbash:

rant over

C

x

( off for some choccy now :) )

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The Autism societies show an amazing amount of disregard for those they claim to be the voices for.

 

 

Lucas I could not agree more with you. I know that it happens here to. That is why when we did our National Tour in 2002 and we issued a 'Call for Action' it was someone with AS who wrote it for us. This was not a token gesture, the guy who wrote it is actually one of my best friends, and he along with other adults with ASD, has really opened my eyes.

 

We do not always agree. Who does? And we have some really heated debates but I hope that my level of understanding has improved because of these debates.

 

I am not autitsic so I will never truly understand. But I will continue to try -

 

Carole

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May I also add that Michelle Dawson has made considerably more harsh criticisms of Cognitive Science in Autism and has not recieved anywhere near the amount of venom in it's response from Cognitive scientists as she gets from the Behaviourists, who can't accept accurate criticism of any kind.

 

Saying that though, she has been engaged in the longest civilised discussion with a Behaviourist-in-training on her messageboard there has ever been and he very much has acknowledged the points she makes in her article.

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I belong to 2 local ASD groups, the first, a carers' group, is co-chaired by a person with AS, she is certainly no token, and in the second each position on the committee is filled by 2 members so that an NT person works alongside a person with AS (this one is an AS group) - it's a little difficult to raise such large numbers for the committee sometimes so we do slip up but we do try - and every meeting and function is attended by at least one of the AS members.

 

there is also a 3rd informal social group that is run entirely by autistic people but which welcomes NTs

 

surely this should be the standard for groups? - what is the point of a group for supporting people with autism (or anything else for that matter) and their carers where the people who most understand what they need have no voice?

 

it just doesn't make any sense at all to me

 

- although I can see why some people lacking maturity and a sense of social responsibility might find it easier to exclude people so that they can make decisions that suit themselves, knowing that by denying them a say they are stopping them from interfering in their pseudo-support.

If the aim of a group is to stamp out the 'plague' of autism then a few vocal autistic people voicing their opinions on the morality of wiping out a whole group of people isn't likely to go down too well. I suppose too that if the aim of the group is to wipe out autism then they don't really need to take the views of autistic people into account - there won't be any if they have their way and those that exist now will not be there for ever, just a temporary irritation to be ignored :(

 

my son has a right to a voice (although obviously while he's a minor I have to be a bit responsible for it - I don't think his opinions on burning schools down should really be aired just yet, not till he's worked out what to replace them with anyway :P )

 

he will not be barred from voting just like anyone else when he is 18; if he has enough judgement to help choose our leaders why should he not have enough to speak for himself and have as much say as the next voter in what his future holds?

 

Zemanski

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Jessica Peers, (Author of Asparagus Dreams)is Patron of our local group. We are also fortunate to have Chris Mitchel (Author of A Glass half Empty a Glass Half Full) as a new member to. :) The attendance of the parents has doubled since Jessica joined our group.

 

We are now at the point of forming a small working party to progess issues and concerns raised by parents and Jessica and Chris. We will of course be asking Jessica and Chris if they would like to join the working party? I bring up the point that there are no reps with AS on every other committee in our Authority on which I sit :(

 

But times they are a changing ;)

 

Carole

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Thank goodness for times a changing.

 

 

I could sit here and write for hours and hours but I think this said it all.

 

I luv my daughter, no matter what she does,

where do you see the child and where do you see the " not wanted behaviour"

the only problem i ever have with her is if she is under stress.

AND we can all throw things when frustrated, or upset, so why should she ( even with sen ) be any different

I am not into forcing her to be someone she is not!

we are all different, and need to accept that!

The kids dont need changin its the rest of the world!!!!!!!

:wallbash:

rant over

C

x

( off for some choccy now :) )

 

 

Because my child isn't the same as everyone else, because he's different does that make him wrong?

 

No it doesn't.

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Sorry for the late reply... different time zone and had to work all day without research time. This is really interesting. I have never seen/heard/read anything like this before. I don't pretend to know everything about the subject. Outside the actual area of applying the methods I know very little of the politics, diagnosis and upper-upper management (the clinical PhDs).

 

Professionals are anti-stim because when we are trying to teach a kid it is really hard if they aren't attending to us. If they are kicking walls, or staring at lights, or spinning in circles it is very difficult to teach. We need to have their attention, and we try to get it without being too intrusive. (ie holding candy beside our face) The self injurious stimulation must be stopped because we can't let these children bang their heads against the wall until they are unconscious (and some will). As for stim that they don't attend - hand flapping, rocking, or toe wiggling, I don't know why we stop it. This is what I would research. Find out if it is pointless to try to extinguish the minor stims because they might really be beneficial. I mean it certainly is normal... everybody fidgets somewhat.

 

I don't know anything about any exclusion of Autistic people or people with autism or however you feel like wording it. I assumed they could vote and had all the rights as everyone else guaranteed by the Charter of Rights and Freedoms. At any rate everyone I have seen in our centre has treated the children with nothing but respect, from the instruction therapists, to supervisors, to clinical specialists. If there is a problem going on it is buried out of sight and parents aren't telling us. But the government funds almost everything because we have free healthcare here. Over the last 3 years it has gone up from 2.5 million to (projected) 100 million by 2006. I am not sure why team meetings would be distasteful. It is open only to the parents of the child, the staff working with the kids, supervisor and any consults. We note observations, make sure everything is going smoothly and discus concerns. The initial meetings before treatment we have the parent tell us what they hope to see in their child after the service, be it able to sit quietly in church, do a play schedule, play with peers, handle a car trip for a 3 day camping trip.

 

I am not entirely dismissing the article. I don't know enough about Lovaas experimental methods to say how the parameters were set. I just know that it is being ethically replicated. It is very possible he was using unethical practices. It's the dark history of psychology. We are always striving to be more ethical and even 2 decades ago horrendous things were happening. I know that ethical boards are getting FAR more strict. What I do dismiss about the article is the way it says ABA treats children. WE DO NOT USE AVERSIVES. We don't use physical interventions short of guiding a hand to a correct choice when asking "where is the dog". Even then we try to fade it as soon as possible. We know autistic kids are happy and not doomed, but with our help their lives can become easier because we can teach them to communicate better with others, which reduces stress and anxiety. We do not associate autism as a cancer. It is not something that can be cured or needs to be cured. Often people with autsim may be lacking in some skills and SKYROCKETING in others. Many of the issues with Lovaas method and data recording are not ethical, but statistical. (threats to internal and external validity, randomized assignment, differential sex proportions (inadequate chi-square analysis), selection bias, statistical regression, outcome measures, the problem of residual autism and how to detect it, the problem of replication, the perpetual how-many-hours-per-week question, etc) Yes it can make us question the validity of his results, but it does not guarantee strictly by that point that he went about in a controversial manner. I believe I already commented on the robotizing of children. MANY things in the past of ABA and any research has been disgusting. I mean mentally retarded persons used to be sterilized by the law. I don't defend the past. I say today the ethics have improved IMMENSLY. As for making children act like any other boy: if that means they don't kick and shout at a teacher, or they ask to go to the bathroom rather than just repeating what they here until they have soiled themselves, good, but I can see the concern if it looks like we are destroying the child?s personality. It may be hard to believe but that really is not our goal. Again: we don't touch gender issues. Locking kids in dark closets? Of course that's wrong! To my knowledge, or at least in our centre, that would never be considered. We don't even do time outs. I hope I didn't miss any ethical concerns. Are you thinking of anything specific I didn't mention (keeping in mind I don't know very much about the upper level politics)? It's not just parents who approve of our methods. I would LOVE to invite you to a session if it didn't violate privacy and confidentiality. I am almost sure you would approve of how we work. Here is the outline for a typical session for a child in day care: 9-10 we watch the child play with his peers, maybe attempt to sooth him if he has a meltdown or guide him if he doesn't follow a teacher instruction (such as clean up). We also may encourage him to interact with peers (if he is playing alone say: why don't you ask your friend to come over and play or we may ask the friend: why don't you go ask so and so if you can play with him?). We may also need to help with sharing. From 10 - 11 we do structured play. This is where the real teaching comes in. We have set programs we run: teaching verbal skills, how token systems work, body parts, animals, reading, counting, puzzles, various things you would teach a young child. But it isn't strict teaching. WE PLAY. It's games the whole way through. Yes they are games with a purpose, and yes we reinforce sitting nice and quietness, but we are often criticized by parents who aren't as knowledgeable as yourselves who say we come into the house or play school and just play games. These kids only have one childhood, we don't want them to waste it. Then we take them back upstairs for more peer interaction, whatever the teacher has them doing. Afternoons go similar. If a child tantrums we may ignore it (if it is just screaming or stomping) or we may reinforce them being quiet with praise of a mild reinforcer (we don't want them to learn to tantrum to get things). If the child is self injurious we get right in there, but we don't hold them, we find toys that are more interesting or reinforce more appropriate behavior. Is all of this unethical?

 

Is it wrong to dissociate the "issue" from the individual? Every clinical psych class I have been in has taught that you need to understand that we are working with people. They are not autistics. They are people with autism. They are not manic depressives, they are people with manic depression. It's a way designed to remind the clinician that they are working with living breathing humans. Besides turning the words around, how is it we offend clients with our lingo? I'm not sure how we are offensive. (which I gather is the exact issue you are bringing up - please educate me). You must remember that it is impossible to see cognition. We can't ever know what someone, anyone, is thinking. We can see behaviors and must try to figure out what the person was thinking to create these behaviors. I mean if I sat and stared at you, would you know what I was thinking? Most likely not. If I grab myself and dance around doing the "potty dance" what would you think I'm thinking? (this is a very simplistic example, I realize this)

 

I believe that autistic children can and will learn on their own. I also believe that we can help them learn more and we can help them learn faster; all with less stress.

 

I do agree there is a fine line between "what is a not wanted behavior and what is the child". We try to tackle big things. Toilet training, paying attention, not engaging self injurious behavior, not screaming or tantruming. That can be seen as part of the child, but they are really non-functional.

 

I would like to assert that I am confident a huge part of our disagreements are arising from the fact that I deal and am experience with severe cases of autism, and have little experience with higher functioning autism, adults with autism and Aspergers.

 

Please keep this coming... I am learning so much! And please keep in mind that I am looking for research hypotheses, so if anything brings an idea to your mind, let me know. And I myself am guilty of being weak here too, but could we all work to be more specific in our examples?

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Professionals are anti-stim because when we are trying to teach a kid it is really hard if they aren't attending to us. If they are kicking walls, or staring at lights, or spinning in circles it is very difficult to teach. We need to have their attention, and we try to get it without being too intrusive. (ie holding candy beside our face)

My goodness I am shocked because if you ask an adult with autism, and I suggest that you do, they will tell you that many of them can not concentrate without the stim. The stim is not stopping them from learning for many it's assisting their learning.

 

My own two sons can not look at me and listen at the same time. My youngest has learnt more while bouncing on his trampoline than ever he did while being made to sit at a desk. Holding candy to your face is like holding out a doggy snack for your pet dog to take should he perform well.Of course you can not let a child stim until they are injured. But have you ever tried finding out what is making them do that in the first place? I do concede that it is very difficult to find out.

 

Sorry it's late I am tired and feeling quite sick at the moment :sick:

 

I will read the rest of your mail tomorrow.

 

Carole

Edited by carole

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That's a very good point. I guess another issue is that we need to teach gneralization, teach so that the skills are there across different settings. If the child can only learn, like you said - on a trampoline, it will be hard when there is no trampoline in his school. And we do try to find out what is making them stim, I believe often if not always it is anxiety and stress. It is very difficult to find exactly what is causing the stress or anxiety though. It could be something as simple as putting the wrong shoe on first. Am I right?

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Just a thought on stims -

It's common for NT's to doodle while on the phone to aid concentration.

Chewing gum (according to the adverts) has been proven to help concentration.

 

If stims help NTs concentrate, why should it be exactly the opposite for ASDs? :blink:

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Hi Primine :)

 

'They are not autistic, they have autism'

 

This is where I think the fundamental problem and difference in understanding arises.

 

Many people on this forum feel very strongly that they or their children ARE autistic! And they are not ashamed of the fact.

 

A good friend of mine (you know who you are ;) ) has an autistic daughter. When asked about this, her reply was "I am female, I don't 'have feminity'. So I am autistic, I don't 'have autism'."

 

Can you see the difference??

 

I also believe that autism is as integral as sexuality.

 

But then I suppose that brings us back to the movement who want to 'cure' autism. If you reduce autism to something you 'have', then you can try to eradicate 'it'...

 

Primine...I do hope we can keep this discussion going. We pride ourselves on this forum on the tolerance and respect we show each other, although sometimes the discussions can get a little heated :o But the tolerance and respect remain, even if we disagree :thumbs:

 

Bid :)

 

Little Nemo...I agree completely with you about stims. I have a brother-in-law from the Middle East. He often fiddles with worry beads. But no one would dream of commenting or stopping him, especially as it is a cultural difference. Food for thought, eh?!

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