Research

[barefoot wend]

I agree with many of the others here. I would not try to stop my son stimming. He has different ways of doing it for different environments and if you stop the stim he concentrates less not more.

 

As an adult I chew gum, tap my fingers, play with my hair, used to smoke - these are all my 'stims' - should I stop all of them? Why are his different to mine?

 

Do you stop a child having a comforter?

 

Barefoot

[oracle]

If the child can only learn, like you said - on a trampoline, it will be hard when there is no trampoline in his school.

 

So my child must change his way of learning because it does not 'fit in' with the norm. I always though education was mean to wrap around the child and not the child wrap around the education?

 

 

And we do try to find out what is making them stim, I believe often if not always it is anxiety and stress.

 

After all the years spent doing this with Lovas I find it hard to comprehend that they still think that kids only stim when they are anxious. Or is that maybe because doing these programmes makes them anxious?

 

Go play with your peer group. How will that help a child who is developmental delayed?

 

To communicate effectively then you have to have shared meanings and understanidng, in my opinion. There are lots of children with autism whose verbal abilities outshine their comprehension. What we need to aim for, again in my opinion, is closing that gap. Don't tick the box until it really is full. Teaching children a series of trick is leaving the box empty. Go play with your peer group. What will they gain fro that if they do not understand anything about that peer group? Maybe a child does not follow an instruction to clear up because he did not understand it? Maybe he was too busy looking at a piece of candy next to someones face? What is the point of reinforcing sitting nice and quietness, if the child has no idea why they are sitting nicely and have to be quiet? Unless all of the games are aimed at normalising the child? If you are guiding a hand to a correct choice then effectivley you are making that choice for the child - no shared meaning or understanding?

 

If the child tantrums do you never try and find out why? Because the child will have no idea why you expect it to sit and be quiet when there is something really distressing it

 

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.

 

Autistic children certainly can learn. As an home educator I facilitate the needs of my two, without programming them, and they have both learned a great deal. By educating them at home I have reduced the stress to a minimum. And - and this is my BIG ISSUE - I have seen a huge change in their socalisation skills. By not being forced or 'encouraged' to go and chat to a peer group that they neither understand or have anything in common with, but by being allowed to feel comfortable in social situations, they have both grown. How do you teach a four year old to interact meaningfully with it's peer group, or does it nit matter if it is not meaningful, when they do not do non verbal communiication, even though other four year olds have already mastered the skill? I say again autism is a Developmental Delay. Some skills will be delayed. It's not a race and it does not all have to be done at an age when you have no hope of them understanding. You ask if what you do is unethical? Yes I think that maybe it is because there never apperas to be a time on your programme when the child is allowed to be themselves?

 

I think what upsets me the most is that we have these programmes for children who have an invisible disability. Is that because they look normal anyway so should be acting that way to? I have never heard of a programme to normalise a Downs Child nor a programme aimed at making the non-functional legs of a child in a wheelchair work? I suppose it's all down to what society deems as aceptable or exceptional and clearly our kids are the later.

 

Carole

[Zemanski]

a point about stims first

 

did you know that it is now considered good practice to encourage, yes encourage, dyslexic children to stim (doodling or playing with a piece of blutac, etc) while listening as it has been shown to improve their concentration and ability to hold information?

 

and I agree, Carol, stims are not always anxiety led, they often have purpose - just saw the newest Jackson programme, they thought Ben (autistic) was just stimming when he was playing with his fingers until they discovered that he was in fact calculating and is a maths whizz!

 

and now for anxiety

 

We've just had a very interesting meeting with Com's ed. psych this morning - a follow up meeting to see if the new interventions are working (yes, they are)

 

we were talking about IEPs (individual education plans) and the fact that Com has only had yearly ones so far and the ed psych (who has just joined the communication team for ASDs so is part of Cahms too now) feels he should have them half termly.

From there we moved to BEPs (behaviour) which Com has never had.

 

I said that the problem with a BEP is that it focuses on behaviour and is reactive rather than looking at the causes in a proactive way. I suggested that autistic children don't need a BEP but an AEP to focus on the management of anxiety

 

I saw the ed psych's eyes widen as I said it and he started scribbling - a completely new idea for him (and he is one of the more experienced and ASD knowledgable EPs I have ever come across, I suppose he would have to be to become part of the diagnostic team)

 

I think I may have just influenced good practice

 

Zemanski

[Lucas]

At a Down's Syndrome conference an 'expert' in Canada said to a room full of parents of Downs children and stated as FACT that the birth of a child with a disability is responsible for 70% of marriages being destroyed, therefore families are being destroyed. All the parents in attendence stood up at the same time and protested against the denigration of their children.

 

I remember once reading something on the Canadian Down's Syndrome Society's website that "Down's Syndrome is not a disease or disorder, but a naturally occuring phenomenom which has been a part of the human condition for possibly millions of years". Contrast this with the position of Autism Society Canana, who make every effort to denigrate and stigmatise those they're supposed to be representing.

 

If there seems to be some ambiguity in understanding the situation for Autistic Canadians, something which I certainly do NOT want to be repeated here in the UK, research the murder of Charles Atoine-Blais.

 

Charles was an Autistic child in Canada who was murdered by his mother. She did not recieve any sentence, in part thanks to the efforts of the Canada Autism community(not to be confused with the Autistic community) who thought she was well within her right because Autistic people are horrid monsters that destroy lives(though they get away with calling us that now by insisting we are 'people with Autism'). Autism Society Canada knows how much Autistics are worth; they gave Charles' mother a job after helping her walk free.

 

I was going to answer with a detailed reply about ABA and stimming, but it's a pleasent suprise that others have done so already.

 

On 'people with Autism':

 

This is offensive because first Autistics are stigmatised and demonised, then this is excused by seperating the person from the bogeyman. It's also not clinically accurate at all: both Kanner and Asperger insisted that Autism was inherent and every real expert since them has said the same(Attwood, Wing, Howlin, Jordan, Baron-Cohen, etc). There was an isolated group of self-proclaimed experts in America who never bothered reading the research so far and decided to collect evidence in a vacuum which started the denigration.

 

This was the pendulum swinging back to the opposite extreme as parent-run groups tried to dis-lodge the refridgerator mother theory. So they went from demonising the parents to the counterpoint of demonising the Autistic people themselves.

 

Adversives:

 

I don't actually know how much you know about Autism, but I've never met a Behaviourist who knows more than what can be found on an awarness leaflet published by ASC. The one thing you can not claim is "We do not use adversives" because you frankly do not know that. You might not INTEND to use adversives, but when you work on the assumption that Autistics are basically the same as other people, you are going to apply adversive stimuli and you WILL NEVER KNOW. I have seen children programmed to give positive responses to negative stimuli and the practitioner is none the wiser. Autistics use covert attention, they will learn from you wether you like it or not and you could be teaching them some very contradictory things and they have to make up their own mind how to respond. If a child has perfect-pitch hearing they will proberley be put in pain by a loud female voice, so to get this loud female voice to shut up they must do as it says. That's just one example.

[streamdreams]

Professionals are anti-stim because they, the profesional not the child, get destracted by it. Inface it's part of the kinesthetic learning style, which most profesional teachers now know should be encuraged if that is the learning style of the child.

 

The danger with all of these kinds of thing is not theory or the practice but the practioner.

 

I shudder to think of the long term self esteem effects. It?s tough enough for NT teenager, let alone an AS one who thinks he has been brain washed.

 

So far every thing I have come across regarding ABA is about making the child conform to standards set by parents, teacher , profesionals.

 

Primine please remeber these are childeren not lab rats

 

J

[streamdreams]

I should also add the many of the HF / AS kids ar going to have an IQ higher than that of the practioner! The will figure out what is being done / has been done sooner or later and will resent more that hell.

 

Have you ever seen an AS kid that knows he is smarter tha the teacher, I have and it not a pretty sight.

 

 

 

J

[bid]

Sorry, but the very use of the term 'programming' worries me hugely

 

Bid

[Zemanski]

right on , streamdreams,

 

we've got one of them - keeps people on their toes

 

quote from Y6 report

 

'Com must learn to recognise that the point of a maths lesson is not to correct the teacher's mistakes'

 

Zemanski

[oracle]

'Com must learn to recognise that the point of a maths lesson is not to correct the teacher's mistakes'

 

Brilliant

 

Carole

[Zemanski]

it was a bit tongue in cheek - Mr W was Com's all time favourite teacher and had been doing maths extension with him since he was 6

 

Zemanski

[call me jaded]

The problem with behaviourism is that concepts such as freedom and dignity have no place.

 

Also in many schools in the UK food (especially sweets) as a motivator/re-inforcer just isn't allowed. The ethics of this alone are dubious.

 

 

What about your research project being directed at 'stimming' and whether it is counter-productive to correct this behaviour?

[bid]

Well, I've just had a look to follow up some of the things Lucas has mentioned about Canada, and I have to say it's really, really scary...

 

I was horrified by the comment made by a national group representing parents, that Autism is worse than cancer, because the person has a normal life expectancy!!

 

Can you imagine saying/believing that about your own child, or anyone else?

 

To be fair, there are some pretty scary home-grown sites, too...don't know if I'm allowed to post the names, so I won't...

 

It's so depressing

 

Bid

[Guest flutter]

Go Com

i will look at other stuff form canada later, my small brain can only compute stuff in small doses and this is all mind boggling

C x

[Zemanski]

one of the video clips on the intensive interaction course I mentioned earlier was fascinating.

This was the child's first session. The therapist started by copying the child's stimming sat just across a few feet away.

The child started to glance at the therapist first and then started to exaggerate his movements just a little at first but more and more as the therapist copied. He began to smile and then laugh but then lost interest and moved away.

 

The next clip was of the same child starting another session. He sat exactly where he had been before and did exactly the same thing. As soon as the therapist joined in he started to smile.

This time the therapist played at stopping and waiting and the child noticed immediately and started to get agitated - the therapist joined in and the child smiled.

Right at the end of the clip, instead of getting agitated the child tried to vocalise and was immediately given response. The child then laughed and vocalised again.

Apparently this was the first time he had tried to communicate verbally with anyone outside his family. When we saw the video it was about six months later and he already had some speech and was learning rapidly.

 

this was a stunning bit of video, it really moved me. The way the therapist gave the child time and space to relax with her and the respect she showed when he indicated he had had enough was great.

She said 'I start by joining in something the child can do and when the child realises that I value his skills then the child can feel confident to try new ones and so we build from where the child is and follow the path the child wants to travel, all the time encouraging him to learn new skills and to enjoy communication.'

 

I used to work in a freeschool and our old head, very famous in Scottish Education, used to say

 

'education is the generation of happiness'

 

we had several children I now recognise as being AS (we took a lot of kids who were excluded or referred from mainstream and some of those definitely were on the spectrum) but this was in the mid 80s so not one was diagnosed. Only one that I know of failed to thrive there and I am sure our success was nothing to do with our training and understanding of autism because we just didn't have any.

What we did have was the willingness to be flexible and follow the child's needs. If a child wasn't enjoying learning then we found a way to ensure that they did and allowed them to follow their interests. Life skills were part of the curriculum for all children and everything done in groups of no more than 6 - 8. No one was singled out for special treatment because all of them were given special treatment.

 

Those were definitely the happiest days of my teaching career, it wasn't easy but it was so rewarding to work with kids who really love learning and to watch them grow into responsible, caring and confident adults.

 

If the school hadn't closed shortly after Com was born, that is where he would be now

 

Zemanski

[Zemanski]

just had an email from our autism advisor - she's putting Anxiety Management Plans into her training package and I'm being given credit

 

Zemanski

[streamdreams]

way

[Primine]

Am I the only pro-ABA person on this forum? I could use some backup people! I'm outnumbered and it's hard to keep up! Makes for really long and boring posts! I tried to bold specific names for specific responces.

 

While some people are okay being called autistics, some are not. That is awesome that so many parents speaking here are accepting of their children being "autistic" and those of you on here who are autistic yourself, calling yourself "autistic". But some people are not so comfortable with the term. They don't like the label, and have various other issues with it. We are simply trying to be professionals and accomodating as many people as possible. It seems from all the links given me here that some behavioralists are trying to cure it "as a cancer". It is MY experience that in my network of centres (5 major community organizations with multiple teams all opporating in one city) that that is not our goal. We are just trying to help these SEVERLY autistic children with any soical/communicative/behavioral deficits/excesses. I agree with Lucas and others that autism is part of the individual. Because it is an integral part of them that will be a part of them for life we need to make sure that they have the skills to function as individuals in a society that is, sadly, rather cruel and judgemental.

 

I am certainly leaning towards "my research project being directed at 'stimming' and whether it is counter-productive to correct this behaviour?" Jaded. That actually came up in my training when I was playing with my pen and an instructor commented that I was "stimming" on it, but I was still paying attention. That night I went through every psych textbook I have (I nearly have my own library) and there is NO mention of stimming being counter productive OR productive if it is unattended. I then hit the library, and found there is little research done. I don't know why we interfere with minor stims, or unattended stims. If I do research and find EXPERIMENTALLY that stimming in fact HELPS focus, this would be very big indeed. I understand it seems like common sense to you parents, and even us ITs, but you need to understand that there isn't alot of experimental research with controled and manipulated variables existing. And we try not to use sweets as well. We pair it with praise so that our sincere "GOOD JOB"s and "AWESOME!"s will be effective, but we also use toys, fruits, and activities they really enjoy.

 

Further, I believe it is correct to say that a goal is for these children to fit in with their peers behaviorally (although I disagree when it is said we are targetting personality specifically). I understand parental concern that behavior is a part of a personality, but please also remember that we are trying to teach skills and socially acceptable behaviors. (This is an extreme example, bare with me) but if it is someone's behavior to steal and this is corrected by the penial system then, while their personality is being modified, it is to conform with society. Correct me if I'm wrong but is this one of the key points of our debates: Some of you feel it is unethical for us to be modifying behavior because it compromises the child's personality and who they are? If this is the case then I'd say it is a gray area, and while one may believe it is unethical (and people are entitled to their opinions) the laws are unclear and open and other people have the opposite oppinion. People are free to lobby their opinions, and even bring about change if possible, but not free to cast judgement on the opposition.

 

Bid: I understand how the term "programming" can be seen as cold and rather inhumane. You are completely right. I shall use teaching now, and I hope that's better.

 

A question I pose to you barefoot: would you let your child carry a comforter until he is 30 years old, or would you try to (NOT FORCABLY) persuade and aid him to manage without it? Again, this is assuming that the stim is an anxiety relief and not something functional (this is where the forementioned research could help: how to distinguish if a stim is an anxiety relief or a functional behavior like focusing). All who said that you need to see what was causing the stim are quite correct, but it is no easy task.

 

Carole: Back to our trampoline scenario: I too believe that in a perfect world education would wrap around the child and not the child wrap around the education, but the fact of the matter is that the funding is not there (and will probably never be there) for every child to have his or her educational needs met perfectly. I think it is the opinion of the government that if we can spend some money 2 or 3 years (my job) to teach the child to learn without the trampoline than we don't need to pay to have a trampoline there for all 12 years of his education. (We do use trampolines in our teaching, by the way). Also, teaching a child to play with peers is attempting to help with any social deficits. If the client (again - professional term for autistic child) doesn't wish to play with them, that is fine. Many of our kids do want someone there, and just lack the skills to initiate contact on their own. Further by encouraging peer play they can witness (I think you are going to hate this term) age appropriate play and then figure out for themselves (like many can) what the meanings are. Generally the children don't clean up not because they don't understand (they will demonstrate it on their own if they are bored and when completing a task often the children will naturally put the puzzle away on their own) - they don't do it because they want to and will keep playing. As a parent you must understand the importance of teaching that activities end: or else you have children with no bed time playing until they pass out. As for candy by the face... it only stays there until the child is making eye contact, so that they can learn the value of eye contact. I don't know how else to teach eye contact. And one of the key characteristics of autism is that they will not make eye contact or observe their environment in it's entirety, instead focusing on one point for long periods. This is theorized to be a significant part of why their learning is behind that of typically developing children, because babies especially learn so much because they are always looking around and watching. If someone is focused for extended periods then they are not seeing behaviors modeled. You are quite right that in a prompt (guiding a hand) we are making the choice for the child. First we teach them a cow (guiding if we have too) then we teach them to "put all of the animals together" selecting from a wide array of items to show that they understand that a cow is an animal. I don't know if that makes it clear at all, but believe me, we are trying to teach understanding and meanings. It very hard and largely dependent on the child's own cognitive abilities. We do try to find out why our children tantrum: sometimes it is something unavoidable like their playschool teacher left the room, or it is raining so play has to be inside, or someone walks by in a green shirt... these are all examples that have sparked meltdowns and we simply cannot avoid. The children are allowed to be themselves for a great deal of time at home and at school. If the child is playing alone in play time we are not firing kids every chance we get. If they have been playing for 15 minutes we may try once to get someone else involved. Maybe it works, maybe it doesn't and if it doesn't, they will continue to play alone until play time is over.

 

Lucas: You are right. We cannot guarantee 100% we do not use aversives. Nobody ever can, including parents. We do not use what a rational person would consider to be an aversive or something we KNOW to be an aversive to the child. If the child does indicate that something may have been aversive we do something called a Functional Analysis (ABC) to find out exactly what it was and avoid it in the future. We record a great deal of data for this purpose alone because we want our experiences with the children to be pleasant and fun. We are teaching, but we can teach them through games and play! And we never take something away for a wrong answer, we always reward correct responses.

 

Streamdreams: I believe BOTH the professionals AND the client can be distracted by stim. I think you bring out a good point that learning takes the attention of both the teacher and the child. Sorry to repeat but we understand they are children. That's why we do what we do in such a playful and positive manner. We do work on building self esteem. When a child is able to effectively communicate for the first time what they want, and they quickly learn to do it again, they are SOOO happy! It really is what makes this job worth doing! Seeing this kids brighten up so much when they learn a new skill... they are as excited as we are! Because our focus is so much on a child based approach I don't know how it would go working with a teacher or adult. We are generally forced to discharge at 6 (which I find to be terrible, and thank god is being appealed in courts as we speak).

 

Zemanski: Congrats on reforming the system with Anxiety Management Plans! This is why it is so good to see parents taking the time to research, talk with other parents in forums like this, and question those ABA professionals! The comment on the Y6 report is awesome too! Should start marketing a bumper sticker or T-shirt!

 

And Zemanski:

 

The next clip was of the same child starting another session. He sat exactly where he had been before and did exactly the same thing. As soon as the therapist joined in he started to smile.

This time the therapist played at stopping and waiting and the child noticed immediately and started to get agitated - the therapist joined in and the child smiled.

Right at the end of the clip, instead of getting agitated the child tried to vocalize and was immediately given response. The child then laughed and vocalized again.

Apparently this was the first time he had tried to communicate verbally with anyone outside his family. When we saw the video it was about six months later and he already had some speech and was learning rapidly.

 

I would like a copy of that clip if you can get it. To me it sounds EXACTLY what we are doing, and if it is, then showing it to everyone on this site might help them understand how it is we interact with the kids. If you could just see the way we are with them... I swear... they are having fun and learning at the same time. It is the way school should be for everyone! The only difference I read is that we work in 1 on 1 and not groups of 8 when we are home based, but when we are centre based (as we hope to be soon!) then it will be exactly like that. I am sorry I failed to get across what exactly we are doing with the kids.

 

I hope everyone here is learning as much from this as I am... <'>

Edited September 23, 2005 by Primine

[Suze]

I am really absorbed by this thread. Primine .....your knowledge and thoughts have really got me thinking .I have many ASD traits one is stimmiing when I am still/ focusing / concentrating.I twitch my toes, leg muscles in a rhythm usually a tune or beat.It is completely in voluntary and most times I,m not aware I,m doing it till I,m doing it .

[bid]

Ooooh, eye contact !!!

 

I have got to take the kids to school...here's hoping Lucas will be along to explain about forcing eye contact!

 

Bid

[Kathryn]

A question I pose to you barefoot: would you let your child carry a comforter until he is 30 years old, or would you try to (NOT FORCABLY) persuade and aid him to manage without it? � <'>

What do you think a cigarette is then?

 

An issue close to the heart for me, this stimming business. My NT son actually stims more obviously and noticeably than my AS daughter.

 

He has always enjoyed school and settled in well. I was called in by the teacher last year when he was 7 to discuss his "disturbing behaviour". My shock turned to relief when I realised she was referring to his stims which can be vocal as well as physical. These were causing a distraction during "carpet time" when the class was supposed to be quiet. Apart from this, she had no other concerns about him and he had already gone through three years of school without any concerns whatsoever being raised. It's ironic that my autistic daughter who was in inner turmoil but displayed outwardly "acceptable" classroom behaviour never gave cause for concern.

 

Most teachers value the ability to sit still and quiet as an indication that a child is fully engaged. My son actually stims more when he is excited and interested. It is when he's quiet that we worry.

 

I understand that his behaviour can be a distraction in the classroom but that's the teacher's problem - a classroom management issue - not my son's. I certainly don't view it as a problem to be eradicated.

Edited September 23, 2005 by Kathryn

[streamdreams]

voting with my feet i'm off this thread

[Alphazebra]

Hi all, I've just gotten through reading the whole of this thread and have some comments I'd like to add. First it is worth noting several things: 1) I am 27 and have Aspergers Syndrome (Not officially diagnosed). 2) I have no experience of any other form of ASD. 3) I have very little knowledge of all of this apart from what I experience.

 

Primine - It sounds like you are really trying to help these children, just like all the parents and people here, and thats great. It also sounds like where possible you are being aware of what you are doing so as to correct, adjust methods for specific situations which is also a good thing. I think the research on stimming would be a very valid and worthwhile idea. I do also agree that is very comlpex and has many factors and influences. I hope you keep getting the kind of information that helps, I know these guys have loads of good stuff.

 

My stimming: I think in my case stimming breaks down into several types. There is the most obvious one, stress induced stimming. This is when a situation is bothering me and so I find something to focus all my attention on to attempt to disolve the stress (sometimes I can't just leave the stressful environment i.e. work and sometimes I am the stressful environment i.e. my thoughts). Stimming in this way ranges from twiddling keys, counting things, reading things. Then there is the stimming because I am bored / not focused on what is going on around me. This normally is of the form of tapping (be it feet or fingers), bouncing (in the form of contracting and relaxing muscles e.g. thighs) and my own speciality lining things up between my eyes and fingers. Basically I find something symetrical in my field of view and I line up to it with my fingers and then map those lines onto other objects always maintaining right angles and symmetry. This type of stimming I normally do and only become aware of whilst doing - it isn't conciously initiated and is not conducive to learning / focussing on other things. Then there is the stimming which aids the understanding, learning, memory etc.. because it seems to help balance my thoughts or stop my mind from racing on to other things. This stimming is also not conciously initiated. The thing is this can also include tapping and bouncing. Sometimes I tap when I'm bored and sometimes it helps me focus. Both times I can do it without realising I'm doing it, it just depends on what the situation is.

 

Eye Contact: I know bid wanted to get a comment in on this and I am sure that anything I say will not encompass all views anyway so there will be plenty of room if I make a comment first. Eye contact can in some cases be very uncomfortable and very distracting. I concentrate far better on people when I am not looking at them that when I am. Whenever I look at peoples faces I am left thinking:

 

'I know what you look like, so why am I looking at you? Oh, yes, eye contact - meant to be a good thing. Now what is it, I should be able to tell what your thinking by what your facial expression and eyes are telling me. Well they look like your face and eyes. Nothing seems to have changed there. Yep, you look the same as you did last time. Nope, I'm not getting anything. Can your eyes speak up a bit because I must be a bit deaf. Hang on, have I been staring. Am I now making you feel uncomfortable. What should I be looking at, should I be moving focus to different parts of the face. HOW DOES THIS WORK???? HOW DOES ANYONE MAKE SENSE OF SOMETHING THAT DOESN'T TALK???? Ok, now I feel uncomfortable even if you don't. AAARRGGHHH. I hate this.'

 

All that runs through my head in about a second. So the point about have I made 'you feel uncomfortable' hasn't even had a chance of happening yet. But the main point I am trying to make is I DO feel uncomfortable. Instantly. My concern is that although NT's associate a lot of emphasis with sight of a person and the reassurance in someone else's eyes. In my case this is completely the opposite. I would rather look at the sky and talk to you than look at you. No offense meant ;-).

[Zemanski]

Hi Primine,

Am I the only pro-ABA person on this forum?

 

sorry ,you may well be, but many of us do use strategies with our children borrowed from ABA even though we don't agree with it as a whole package - for example working for tokens and rewards is extremely popular with many parents but most adjust the way it is done to suit the child. The same is true for other therapies, we take what we see might work for our children and adapt them to fit their needs to the extent that they are often completely unrecognisable as deriving from any particular 'programme' - this is all about flexibility and meeting an individual's needs.

 

While some people are okay being called autistics, some are not. That is awesome that so many parents speaking here are accepting of their children being "autistic" and those of you on here who are autistic yourself, calling yourself "autistic". But some people are not so comfortable with the term.

 

I suspect that many people who don't like the term autistic are parents who still dream that the autism will go away, they still see it as a layer over the top of the child's 'real' personality rather than as part of the child - when working with very young children you are more likely to meet more of those parents than are represented on our forum.

Here the majority of us are either autistic and old enough to speak for ourselves on a forum or have older children (some of us fit both categories) - it can take several years to accept autism in all it's glory, to recognise the good alongside the bad and to learn to respect the differences that being autistic make to a person's life as being a double-edged thing. For Lucas, autism is not a negative at all but just part of who he is Com has shown signs at 13 that he may be actually feeling superior about being autistic (favourite insult a year or so ago - 'Oh, you're just NT!') we have had quite a few conversations about valuing NT qualities! -

Some of the threads here talk a lot about the strengths of the autistic mind; the keen ability to focus on detail for long periods leading to the development of quite mind-boggling (for us NTs anyway)skills in all sorts of areas, the ability to think logically without distraction, the honesty of approach ......

 

 

I am certainly leaning towards "my research project being directed at 'stimming' and whether it is counter-productive to correct this behaviour?"

 

Way to go, Primine

 

Nemo says that if I'm not stimming he can't sleep - why do I stim in my sleep?

I stim all the time - usually jiggling my feet, if I want to stop I sit on them. I'm NT(although dyslexic) and I stim, Nemo is AS and doesn't, unless you count smoking which I think probably is a substitute

 

 

Further, I believe it is correct to say that a goal is for these children to fit in with their peers behaviorally

 

One of the aspects that makes life difficult for many autistic children and adults is an inflexibility of mind - all the focus on detail and thinking in straight lines can mean that it is difficult to adapt to different ways of thinking and behaving. This is why we do not accept that autistics must be the only ones to change themselves to meet society/peers but that society needs to learn to be flexible to accomodate autistic thinking and needs. This does not mean that we do not want to help our children develop skills that will help them be comfortable in our society, that is part of what we teach all our children and we put a lot of effort into our autistic children learning these things because learning them does make life easier for them, but it does mean that we don't accept that society, cruel as it is, can't also change to meet them.

In Britain we have this 'inclusion' issue going on - ideally all of society should be inclusive, should embrace all differences, physical, social, cultural, racial, religious....., as I say this is an ideal.

The thrust in education is to include all children with special needs in mainstream schools, meeting their needs amongst their peers.

unfortunately, the theory may be good in essence but we are still struggling to get past a lot of prejudice as well as trying to manage the changeover without proper resourcing, training, funding and understanding and this is a particular problem for autistic people because it requires such a different approach to meet their needs form the way even the needs of NT kids with learning difficulties or other disabilities are met - changing the mind set of teachers and peers is a big challenge.

Changing the actual environment in which they are taught is an even bigger challenge in some ways because there are so many things that are part of every day life in schools that just can't be altered overnight - lighting, class sizes, hustle and bustle in the corridors, etc. which is why many people here are not so keen on inclusion as the small special schools, while not ideal, meet more of the environmental needs of autistic children and are more flexible in their approach.

 

A question I pose to you barefoot: would you let your child carry a comforter until he is 30 years old, or would you try to (NOT FORCABLY) persuade and aid him to manage without it? Again, this is assuming that the stim is an anxiety relief and not something functional (this is where the forementioned research could help: how to distinguish if a stim is an anxiety relief or a functional behavior like focusing). All who said that you need to see what was causing the stim are quite correct, but it is no easy task.

 

stims and comforters can be changed and usually if a child understands why something needs to change they will cooperate. I had a kid in my class, about 9 or 10, who used to bring her blanket to school. She was getting a lot of stick for it from older kids. I sat down with her and her parents and we talked about how to solve the problem - how could she keep the comforter she needed but avoid the bullying? She agreed that she only needed a small piece of the blanket and would try keeping a bit in her pocket or up her sleeve. Worked a treat - she let mum cut it up and bind the edges so she had a stock of small comforters ready for use which was great as she stopped worrying about losing it. I know thirty year olds who have comforters - they have just learned to keep them hidden.

 

Carole: Back to our trampoline scenario: I too believe that in a perfect world education would wrap around the child and not the child wrap around the education, but the fact of the matter is that the funding is not there (and will probably never be there) for every child to have his or her educational needs met perfectly.

 

We don't expect to have our child's needs met perfectly but there is a principle here and going back to inclusion it is about meeting the needs of a child which is easier in the special school system where kids do not get discharged into mainstream unless they are ready and willing to cope and where trampolines can be used as an integral part of a child's education if need be.

 

Zemanski: Congrats on reforming the system with Anxiety Management Plans! This is why it is so good to see parents taking the time to research, talk with other parents in forums like this, and question those ABA professionals!

 

Sorry, I have to shatter an illusion here - I'm not just a parent but a professional in special needs, specifically autism, too. Although I am not working at the moment I do still have a lot of contacts who I work with on an informal basis.

I'm currently involved in negotiating huge changes for my son in his mainstream high school but at the same time trying to influence the school and LEA to change their entire approach with a view to meeting the needs of autistic children in mainstream.

Com's school is getting an autistic unit next term which will also be an umbrella for Com and the 6/7 other AS/HFA kids in the school and I am working with the advisor who is setting it up - the idea is to get the changes started for one child (mine) so that the process of change is already underway for the new children - this is why, although the idea was a brainwave, it was so easy for me to get the idea into the system.

 

sorry, the video is not licensed for general release outside local LEA training and I have no access to it

 

however you could look at

 

http://www.intensiveinteraction.co.uk/

 

II is being developed in Britain by speech and language therapists and I don't think it is widely known elsewhere yet

 

It is a one to one therapy - the school I was describing with groups of 6-8 kids was a school for NT kids not special needs and we were not using any therapies

 

take care

 

Zemanski

[bid]

Hi again!

 

Eye contact ...Primine, have you ever asked an autistic person about this, or read what some autistic people have written?

 

I have many AS qualities, and I have what I would call 'unstable' eye contact (can't think of a better term...perhaps there is a proper term, but I don't know what it might be...). Or maybe that should be 'variable' eye contact?

 

In certain situations, if I am very relaxed with people I feel very comfortable with, I think my eye contact is fine. Although I am still very often consciously 'doing it', if that makes sense (better glance away now, so that I'm not staring, oh no, better look back now...). I also get sidetracked from the conversation by the details of the other person's face!

 

In other, more stressful situations I have to 'force' myself to make eye contact, and then I get knotted up inside as I'm aware that maybe I doing it too much, or not enough.

 

Then there are other situations when I'm very stressed in social situations (even with good friends or family) when I just can't do it at all. I can't even put into words how I feel about eye contact during these situations...it's just horrendous. And then I contort myself so that I give fleeting eye contact or sideways eye contact, and I'm panicking inside because I know I must appear rude or odd

 

If I was a child who had very little eye contact, I can't imagine anything more invasive than being forced to make eye contact. The stress they experience must be dreadful...how can this possibly be conducive to learning??

 

Just my personal thoughts and experiences...

 

Bid

 

I would also like to echo Alphazebra...you obviously care very much about the children with whom you work, and are a reflective teacher

[Zemanski]

good stuff on eye contact

 

come on, Lucas - need to hear from you on this

 

Zemanski

[bid]

Another thought...

 

Perhaps the reason eye contact is difficult for children being 'programmed', is because the 'programming' is intrinsically stressful??

 

Bid

 

I know my son's eye contact can seem fine when he's relaxed, but in a truly stressful situation he will either sit with his back to the speaker, or bury his head in my shoulder.

[sue1957]

I really don't know much about this but .....

 

Quote from a previous post Primine: "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 have read in a book on vision and light therapy that under stress the visual field can contract. From the diagrams it looks as if instead of seeing the whole picture a person sees smaller amounts, perhaps even to the extent of it being like looking through a biro tube. In this case hand flapping for example may be an attempt to stimulate peripheral vision. Removing the cause of the stress so that peripheral vision didn't reduce would seem a better option than trying to change the behaviour. Hand flapping may have a number of purposes we haven't thought of.

 

My son's phobias, rituals, stims etc was caused by fluoride (he is extremely sensitive to it). Once ingestion stopped and it started to leave his body, he didn't need the behaviours any more, but it was his choice to drop them, we didn't do anything.

 

In his case behavioural therapy to reduce the stims phobias and rituals would not have been appropriate, but then his did not include self harm. In that case behavioural management to stop self harm is one thing, but looking at causes and reducing stress would be important at the same time as well. I'm not happy about stopping stims that don't self harm just because we can, that in itself could be stressful to anyone who needs them for a purpose we don't understand.

[oracle]

I am aware that neither of my sons do faces very well. They both find looking at a face uncomfortable. So if forced, or even encourage to do so, you are actually disabling their ability to concentrate and focus on anything else. My eldest has told me that having to look at a face reminds him of looking at a plate full of wobbling jelly He says a face is on the move all of the time. Mouth opening and closing, blinking, eyebrows rising and nose twitching. Now when you look at it like that, you can understand why he finds looking at you quite off putting to have to look at a face. And more importantly, if he does not need to be looking at your face to be able to listen and learn, then why force the issue.

 

Many people with ASD cannot mulit-task and that means look and listen at the same time. We only want them to do so because it makes 'us' feel more comfortable. That means that it's our problem and not ours.

 

I still feel as if the point being made here is that if someone is autistic then that makes him or her broken and they therefore require fixing. And also disbelief that we as parents can possibility be happy with shoddy goods.

 

I have been quite shocked that after so many years of doing ABA those working with the programme appear to know so little about autism. But then I suppose you only know what you are told and that appears to be that you fix autistic people - even if they don't want fixing.

 

I find this very emotive and upsetting actually. I probably dip in an out of ABA myself without even realising it because I certainly want to improve the quality of life for my sons and their understanding. But I also allow them a place to be themselves.

 

ABA to me has always come across as having 'seen the light' Praise be! My light is a different colour and my kids also like that colour.

 

Carole

[barefoot wend]

Primine

 

I see that everyone has answered for me - and I wholeheartedly agree with what's been said.

 

As we are talking of young children I gave the example of a comforter. I would not take a comforter from a child - most children learn to do it for themselves as they get older or, as Zemanski said, learn to hide them. As adults we move to new comforters that are deemed more 'acceptable' .

 

My son stims in different ways for different reasons. Sometimes comfort, sometimes anxiety, sometimes to concentrate, sometimes because he's happy and excited. As a parent I have come to intuitively recognise the difference between them. It can be the same stim but just done differently.

 

 

Barefoot

[littlenemo]

Eye contact.

An aversion to touch is common in autism (it used to be called 'invading your personal space')

I find eye contact exactly the same, but infinitely worse as it's so much more personal. As bid says, I can do it consciously, but need to be prepared for it and it has to be on my terms for me not to feel violated.

So you can guess how i feel about forced eye contact!

[Lucas]

Hehe, ok.

 

I reminds me of that film with Gene Wilder and Richard Pryor: Gene Wilder's character is Deaf, Richard Pryor is Blind and they have to use each other's skills to get by. I think it was a BRILLIANT bit of fiction about disabled people and likely did a damn lot more for disability rights than politically-correct, clinically inaccurate person-first terms.

 

One scene where they have been arrested and are having their mugshots taken: Wilder(the Deaf one) is standing with the chalkboard and the policewoman taking the picture says to Pryor(the Blind one) who is stood next to Wilder "Ok, just tell him to hold still and keep facing forward." So Pryor taps Wilder to get his attention, Wilder turns to Pryor just as the picture is taken and says "She wants you to stay still and keep facing forward." "Oh ok then." but the policewoman has caught Wilder as he was turning, so missed the shot "F**k!" she yells.

 

Now this keeps going on for quite a while with the policewoman repeatedly asking Pryor to tell his friend to face the camera, but for Wilder to lip-read what Pryor tells him he has to face him and the policewoman keeps getting him in profile instead of from the front. This is all the policewoman's fault as these guys are just doing what is neccessary, but she is being impatient and inconsiderate of their idiosyncratic means of functioning.

 

So if you wouldn't force eye-contact on a Deaf person who relies on concentrating on the mouth, why is it ok to do it to Autistics? Many Autistics find adversive sensations in vocal patterns, so we have these clever ways of editing them out whilst getting enough sounds to understand. But to do this we have to lip-read in a similiar manner to Deaf people. We can't do this if we have to maintain eye-contact. For some others, looking and listening are totally different things altogether and to listen, we must not look by focusing on a fixed point(not the eyes, they are disturbing) or by rolling our eyes in our head.

 

Let's face it; eye-contact is just one of the many things focused upon on ABA and other interventions which is soley for the comfort of non-Autistic people. Behaviourists don't study Autism, they study Behaviourism which they simply think is adequete for virtually anything. If Behaviourists did study Autism they would not be doing half of what they do with Autistics.

 

I just so happened to have many comforters at my current age of 21 and I suppose I will still have them far beyond 30. I don't understand why so many people across the pond don't see anything wrong with stigmatising and ostracising a specific group and then pretending the moral solution is to then provide that group with the means to destroy itself. Let me explain:

 

In the 1970s Ivor Lovaas 'cured' Homosexuality, the evidence has certainly been ceased upon by certain groups to show that Homosexuality can indeed be cured with ABA. Ivor Lovaas was actually working with what he described as 'femine boys at risk of developing Homosexuality'. Here 'inappropriate female behaviours' were supressed and 'appropriate male behaviours' taught to replace them. Now as Behaviourists only study Behaviourism, they don't study the gender either: so they basically identify behaviours by stereotype and caricature and then label them wanted or unwanted accordingly. Lovaas didn't like the idea that Autistics could learn anything without ABA, but he also didn't like the idea that anyone in an ABA programme could learn anything other than what he specifically inteded to teach. So no one found out until later that his femine boy subjects nearly all became homophobes; behaviourists don't seem to understand there is more to a person going on underneath than what behaviour can tell.

 

But nowadays Homosexuals are allowed to be Homosexual and no behaviours connected to Homosexuality are deemed dysfunctional, maladaptive or inappropriate(in relation to Heterosexual behaviour anyway). So what excuse is there to be still treating Autistics like Homosexuals were 30 years ago?

 

Whenever that 'cured' Autistic guy Raun Kaufman of Sun Rise rears his head and demeans Autistic people, I can't help but think of the homophobes created by Lovaas' femine boys project, same goes for every Autistic wheeled out to promote their own 'cure'.

 

And no, an Autistic can not be distracted by a stim, period. If it's a stress-related stim, they are being distracted by the irritant stimuli which they are trying to get relief by stimming and every ignoramous in the room reckons it's the stim that's distracting, but it's not. Lovaas was the one that started these myths about stims but even though he contradicted even himself aswell as being unable to maintain consistent standards, people still listen to what he said.

 

And one of the key characteristics of autism is that they will not make eye contact or observe their environment in it's entirety, instead focusing on one point for long periods.

 

Now I would love to see the evidence for this, it's patently untrue. I've already mentioned covert attention; Autistic children can often be observing more than you with all five of their senses and you'd never know. Behaviourists have this knack of identifying behaviour as maladaptive, unwanted or distracting, even if they don't know what the behaviour is. Does an Autistic flap their hands because of the sound, the sight, or the feeling? Behaviourists simply don't care; it's unwanted(but not to the Autistic) so they must stop it.

 

It doesn't matter that in most far eastern countries, maintained eye-contact is culturally seen as aggressive and threatening; they prefer a courtesy glance to acknowledge attention, then their eyes can do what they want. It certainly helps to think of everything you see in an Autistic as a cultural difference. It's believed that this trait among Asians is because in their culture it is vital to show things to other people, so they don't demand eye-contact because they want the person's eyes to be free to look around their house, the product they're selling, etc. Autistic children too love showing people things, but often don't seem to look at things shown to them for the pure reason that they have already seen it, it's just that you didn't see them look at it(covert attention again, Autistics are the masters).

[oracle]

In the 1970s Ivor Lovaas 'cured' Homosexuality

 

My God Lucas I had no idea about this

 

Carole

[Alphazebra]

(favourite insult a year or so ago - 'Oh, you're just NT!')

 

Zemanski, this is a great line. I just wish there were more people around me who would understand it if I used it. ;-)

[Zemanski]

I think that may be why he doesn't use it so much now

 

Z

[call me jaded]

What a great thread this is. I've just chucked jam sammidges at my kids so I could read it. Don't worry, Dad (our hero) is bringing proper food later.

 

I like the description of II. I searched high and low for something like this in the UK after reading Stanley Greenspan.

 

I have grave doubts whether Early Intervention is actually what our children need at all. What autists need to learn is an understanding of their own differences and how the NT world perceives them. This needs to be applied to the NT world too, of course, if this principle of inclusion is ever to get anywhere beyond tokenism.

 

Can this be taught to a four year old in an intensive couple of years? I doubt that very much. What is being taught is a series of acting skills and the children, finally praised for doing something right, respond as expected. But are these skills enough? What about the child's self-esteem when they realise they are still different? This really troubles me about ABA.

[Zemanski]

almost forgot

 

the diagnostic criteria only states inappropriate eye contact - not all autistic people do not use eye contact, some, like Com are too intense for other people's comfort. He will stand and talk at you while looking away but once contact is made it is there for good

 

he doesn't make eye contact at all outside though - the glare is too much for him to look up at people without sunglasses on, I think that may improve this year though, he's already almost tall enough to look down at me

 

Zemanski

[Zemanski]

Jaded, II is quite new and limited to certain areas at the moment I think, I happen to be in an LEA that is involved in the development and it's only been here a couple of years.

 

one of the major problems I have with 'early intervention' programmes is that most of our kids, especially AS, are diagnosed after it is too late to start them - what then is there for our children and the adults who never had the opportunity to get a diagnosis?

 

II is used with adults as well as children and is about filling in the gaps in social learning and experience, it has no fixed starting point so you can begin at any level, and there is no set time limit so it can be an on-going therapy which is what most of our kids really need to learn to live comfortably in our NT world.

With many of our children we know that they need to practice early skills much longer than other children but we are programmed to interact according to subconscious signals. If a child is over a certain size or has a certain level of physical development we will automatically interact at that level so until we know there is a problem with us interacting at the level we expect we just keep moving on as the child grows.

If I had known that Com needed to blow raspberries for 3 years longer than Dot, I would have let him but I had no idea, and there were so many other things he was progressing with just fine.

Com at 13 is now revisiting raspberry blowing and filling in his own gaps - driving us up the wall

 

All the clips I saw were of children with pretty profound communication difficulties (not all autistic though) but we did discuss how it could be used with a child with better skills such as many of those with AS. Because you start from where the child is, rather than from a fixed point you could even begin with interaction on quite a high intellectual level about a special interest and gradually lead the child into other forms of communication - I can just see AS teens with an obsession with dinosaur facts being taught physical role play

 

Although I'm not attracted by II for Com particularly I have found that I understand his need to play at such a young level better and I'm far more tolerant of the raspberries than I used to be

 

I agree that children need to understand why they are expected to behave in certain ways - pavlov's dogs must be avoided, children need to learn to be self aware and to be in control of their lives, not respond to stimuli without understanding just because someone tells them it's what they should be doing. I still need the loo every time I hear a tap - my mum programmed me that way but at 40 it is more of a nuisance than a help

 

Zemanski

[Zemanski]

how much did you read, Jaded?

 

http://www.stanleygreenspan.com/publications.shtml

 

or rather, which one?

 

Zemanski

[Lucas]

The DX criteria says 'inappropriate eye contact'? I think I'm going to have another read of it and point out the many ways in which a non-Autistic but foreign person could fit under it all.

[Lucas]

The DX criteria says 'inappropriate eye contact'? I think I'm going to have another read of it and point out the many ways in which a non-Autistic but foreign person could fit under it all.