Hand flapping

[Guest flutter]

if you stop a stim, will the person not move on to something else in a similar fashion?

i have had to tell dd that her stim of sticking tongue in and out like a lizard may get her into trouble at school, cos they wont see it as a stim? but i may hav done worng in saying that, should the school accept that she does that? i let it all go at home?

x

[LizK]

As a parent knowing when to allow my son to be autistic and when to try to encourage him to be 'normal' can be a dilemma. There is a desire I think in many of us to inherently want our kids to fit in. I know say I'm out and someone speaks to Adam and he blanks them my immediate reaction is to try to force him to speak to them and appear 'normal' when that is in fact more for me than for him. I let him stim or engage in repetitive behaviour, I don't force eye contact because I think that for him at least they are an integral part of his autism and who he is as well as serving a function and I worry that stopping him would be unpleasant or counterproductive. I don't like the idea of 'dogtraining' my son or trying to superficially 'fix' him without looking at whatever is underneath or the reasons behind it.

 

However I guess I do do some 'dogtraining' at times in trying to teach him to act in a socially appropriate way IF I don't feel it is harming him or detrimental to his happiness. So I will let him run through the automatic doors at the supermarket once or twice and make sure he watches them close as to do otherwise would cause anxiety and a meltdown and to anyone who glares at him but I won't let him repeat it ten times which he really would love to do. He's got a thing about screeching at the top of his voice at the moment so I will stop him from doing it in public but he can go to his room and screech as loudly and as long as he wants to into his little microphone. He is a sociable child who loves to play with other children, desperately wants friends but doesn't know how to go about doing it and can get quite lonely. I think he needs to learn to fit in to a degree and needs to learn social skills and ways of behaving to encourage friendships as having friends is important for his happiness. Equally I hope other children will learn to accept Adam because of not inspite of his differences. I suppose that too you could say that one of the aims of the early intervention he has had to help his development and maximise his functioning is to help him be more 'normal' though I hope this is because of inherent neural development rather superficially programming him to behave in a certain way

 

Finding the balance between respecting his autism and teaching him about 'normality' is something I find really difficult and often question myself about whether I'm doing it right . He can't tell me whether I am so just muddle along doing the best I can like we all are.

 

Lx

[Stephanie]

Just to answer what my comments are on the points made by the adults who stim ... I can only relate to hand flapping here.

 

It just throws back questions like did their parents try and stop them flapping?? Are there any adults who stopped flapping and are happy that way? Do they know/care/feel how they look when they are doing it etc. Did it naturally stop when they got older? Do they miss it, do it in secret etc?

 

Asa's new stim is keeping a tissue with flags printed on it in the pocket of his school trousers, he just puts his hand on it when he needs to. Obviously I am far happier with that than the flapping.

 

I am certainly interested in the comments made, especially Lucas ... if the whole world thought like that it would be a better place, unfortunately people are not made like that.

 

I mentioned the guy at Centerparcs, swimming with his family, the wave machine stopped and he got upset and started flapping and prancing and jumping about - a lot of the people around got a bit freaked out by it because it was such an unusual behaviour to witness (obviously we are in the know but a lot of people weren't). It was a bit of an awakening for me ... not having witnessed that many other people on the spectrum ... my initial thought was "oh god, that could Asa in 40 years time!" .... yet on the other hand, I was just glad he was married with kids. I guess I would like in an ideal word for Asa to be him in 40 years, married with kids, without the flapping!

 

I guess I am just a parent with high hopes and expectations at the end of the day - these will change as time goes by no doubt. I can only judge him as a 5 year old for now.

[butterflycake]

My son handflaps . To be honest i dread him doing it outdoors. i dont want him picked on, hes only 3 and nonverbal and sometimes i wish the autism would go away and my wee son would come back. He was functioning the same as any other child till he was 16 months or so. Then he started losing his words and i know im in the wrong as hes a happy healthy boy. Its just so obvious hes autistic now. He walks on his toes, handflaps and makes facial grimaces. Im heartbroken instead of coming to terms with the diagnosis, im taking it worse and feel im heading towards breakdown. I just feel helpless like i want to cure my son of this condition.

[bid]

Thanks for your thoughts Stephanie

 

I really meant I wondered what you thought when people like Lucas describe the importance of stimming to someone who is autistic, and how it makes them feel to be stopped.

 

I think we have different opinions, but it's good to be able to share them.

 

I think those of us who don't stop our children stimming also have high hopes and expectations for them.

 

Bid

Edited June 8, 2006 by bid

[baddad]

I think we as parents walk a very fine line on this one -

 

I'd love to live in a world where stims didn't attract unwelcome attention and where it was just accepted as a natural expression of 'self' and a valid expression of social unease. That it isn't is a HUGE social wrong, and one we should all try to address/redress at every opportunity.

However, it is a fact that our children's lives are likely to be marginally less challenging if we can help them to redirect very visible stims into behaviours that are for them equally reassuring but are less likely to attract the attention of the judgemental swine that make up a majority of the NT population.

 

I think we have to reassure our kids that 'stimming' (and i sort of find that word offensive in it's own way - sort of trivialises something that may be hugely important to the individual?) IS perfectly natural and part of who they are, while helping them to understand that some people will quite wrongly make value judgements...

 

At the end of the day, I guess we ALL have to accommodate other peoples prejudices to some degree, and modify our behaviour accordingly... The important thing (IMHO) is to teach our kids to do so without losing their sense of 'selfworth' and to help them to understand it's not the stim, or them, that's the problem...

 

L&P

 

BD

[Flora]

baddad

 

I don't like the word 'stim' or 'stimming' either... I'm not really sure why, it just makes it sound like something unpleasant and gives no clue to the uninformed mind as to what it means.

 

As for accomodating people's prejudices it is wrong that we should have to There are some forms of prejudice around which have more or less become a criminal offence and it irritates me that prejudice against autistic people in particular isn't treated in the same way.

 

I agree that if there is an alternative action that the person can use which makes the stim less obvious AND if they are happy to use this alternative then that's great... but by their very nature stims are often done subconciously so using an alternative isn't always feasible. Some of the stims that I'm aware of are like a reflex action to stress or excitement.

 

Lauren

[bid]

I don't mind the word 'stim'...until I read it on this forum, we'd always called it 'diddling'!! (Be quiet, BD! ).

 

Bid

Edited June 8, 2006 by bid

[Flora]

bid... diddling... I like that... what a lovely word

 

Lauren

[baddad]

baddad

 

As for accomodating people's prejudices it is wrong that we should have to There are some forms of prejudice around which have more or less become a criminal offence and it irritates me that prejudice against autistic people in particular isn't treated in the same way.

 

Lauren

 

 

Hi lauren -

 

I agree that it is wrong that we have to accommodate other peoples prejudices, but we do, because the alternative actually makes the situation worse. ANYONE will tell you I'm a right belligerent ###### myself - the first to jump down the throats of people making sweeping generalisations and/or value judgements based on preconceptions rather than realities, but the truth is prejudice is usually based on fear, and if you try to tackle that head on the usual reaction will be (no matter how 'right' you might be) more fear...

Sometimes softly softly is the only way to go: better one true 'convert' than ten forced against their will - the covert can convert others, the others will only undermine in whatever capacity is left them.

 

L&P

 

BD

[Gardenia]

 

I for one know that hand-flapping raises core body temperature and makes my skin feel tighter, like having a hug without unwanted touches and pressure in the wrong places.

[/quote

Can I ask a completely genuine question?? I'm really worried that it will be taken as a 'dig' at some parents, which it truly isn't...just something that I would genuinely like to understand more...

 

Can I ask Stephanie, Gardenia and other parents who stop their children stimming their opinion of what people who are actually on the spectrum say about the importance of stimming?

 

In my opinion I think Lucas does get a good feeling when he stims but I think I will try to offer my son an alternative stim if possible, which right or wrong does not look to out of place.

 

Here is the opinion of another autistic adult called Ros Blackburn

" I am so grateful that my parent pulled me kicking and screaming into the world or I would still be sitting in a corner doing my flicky, flappy things"

 

Gardenia

Edited June 9, 2006 by Gardenia

[Flora]

baddad, I agree with you 100%... it just happens to irritate me (not the agreeing with you, the prejudice irritates me)....

 

Lauren

[bid]

I heard Ros Blackburn speak about 10 years ago (maybe more actually because I think Auriel still only had a dx of Dyspraxia).

 

At the time I was horrified by some of the things she said her parents did to her, the one that sticks in my memory being that they locked her in the garden shed (during melt-downs I think??).

 

Bid

[Lucas]

Unfortunately just about every Autistic adult I've heard praising their own abuse describe scenes of horror that they themselves have become detached to, these horrible things are actually seem as normal to them.

 

In Ivor Lovaas' Feminine boys project where he tried to help 'boys in danger of developing homosexuality' by getting rid of feminine traits they exhibited like playing with dolls or doing their nails were elminated with ABA. The boys in this experiment did lose such behaviours but also learned things they were not overtly taught: that homosexuality is wrong, disgusting and they should be vigilant in their own thoughts tending towards it.

 

This is a feature that is repeated when Autistic children are given ABA or any intervention teaching them that there is something wrong with being Autistic.

 

I've challenged other Autistic adults on their views when they support their own elimination from the gene pool and come up short on answers even when put in the politest and neutral manner possible. By saying that he was 'dragged into the world' Ron Blackburn is insisting that Autistic people by default are not 'in the world' and need 'dragging into it'. He's a token Autistic adult, like racist political groups often have token black men or women.

 

He calls them 'flicky, flappy things', I would ask such a person what he was doing when he did these 'flicky flappy things' and he wouldn't have an answer because he's not been allowed to develop his own views as he's been smothered in 'treatments' which all too often are promoted on the premise that Autism is wrong, disgusting and they must be vigilent in their thoughts tending towards it.

 

I think very carefully before I say anything about Ron Blackburn because what I think and say about Autism, as an Autistic adult, will shape how all Autistics including Ron Blackburn are regarded and treated. Ron Blackburn shows no other Autistic the same regard.

[bid]

Hi Lucas,

 

I remember thinking at the time when I heard Ros Blackburn (she's a 'she' BTW!! ) that she seemed to regard what her parents had done as 'normal', which I found very disturbing.

 

I know I was not the only parent there who felt very uncomfortable over this.

 

Bid

[Flora]

Ooops, posted in wrong thread.

Edited June 9, 2006 by Lauren

[baddad]

I've challenged other Autistic adults on their views when they support their own elimination from the gene pool and come up short on answers even when put in the politest and neutral manner possible. By saying that he was 'dragged into the world' Ron Blackburn is insisting that Autistic people by default are not 'in the world' and need 'dragging into it'. He's a token Autistic adult, like racist political groups often have token black men or women.

 

I think very carefully before I say anything about Ron Blackburn because what I think and say about Autism, as an Autistic adult, will shape how all Autistics including Ron Blackburn are regarded and treated. Ron Blackburn shows no other Autistic the same regard.

 

Hi Lucas - I'm not responding to any specific situation, but i do find this generalisation about autistic 'uncle tom's' very VERY disturbing. It's an easy accusation to level at anyone who has a different POV about themselves than the POV held by the person making the 'uncle tom' accusation, and it is - in real terms - little more than gainsaying... You may not agree with Ros Blackburn's pov, and it may be totally irrelevent in terms of your own experience, but unless you have experienced her life it is impossible for you to know how much of what she says is RELEVENT TO HER...

FWIW i don't think all people experience autism in the same way, and (as I've said before) i don't think any individual -autistic or otherwise - can speak with any sort of authority on the way that another person interprets the world or their interaction with it...

Donna Williams, said something in her books about the 'war' that she waged with the world to find her own place in it. She is very specific that there's no place for violence or abuse in helping a child to realise its potential, but does say: ...If love won't work, try persistant, detatched, non-violent war.

You might think that DW is another 'token aspie', but I believe that she and Ros Blackburn and others who you would regard as having 'sold out' are just expressing their experience of autism, and that they have as much right to do so without being labelled as you do yours.

 

L&P

 

BD

[bugbug]

I would never stop my son flapping its a part of who he is and its harmless. He's usually somewhere else in his head when he does it in any case so if people were to look at him strangely he wouldn't associate it with flapping or even care. I must admit I hate the word stimming it sounds to me like something more serious than it actually is.

[Bullet]

I have three basic "rules" for Tom when it comes to his behaviour.

If his actions are putting him in danger he must be stopped from doing them.

If his actions are liable to damage property he must either be stopped or moved to a safe place.

If his actions are causing either physical or emotional hurt to somebody else he must be stopped (eg if he tries to take a toy off another child, a very rare occurence).

All other things I let him do as I can see that he has his reasons for doing so. For example today I took him to Toddler Group and he didn't want to interact, didn't want to go out ito the garden, didn't want to join in with the songs, just wanted to mostly draw and do some jigsaws. Now, I could have said "no, he is going outside to mix and to join in" but that would have made him miserable and yes, I admit I was selfish and wanted him to at least point out his drawings to me rather than ignoring everyone but again he was settled and happy. I did try him with the singing as he does love action songs but the singing was outside which I think unsettled him as he only stayed for one verse and then wanted to go back in again which I let him do as I'd far rather he was content doing what he wanted.

I'm happy to let him stim, to eat with his hands, to basically fit into the world in the way he wants and though I have wobbly moments when I would love him to want to point things out and look at me for responses I accept that he will only do that when he's ready and not because he's been made to.

[bid]

I think that's a lovely way to be with your son, Bullet

 

Bid <'>

[Gardenia]

BADDAD Well said

 

Lucas -Ros Blackburn gave us her interpretation of autism as she sees it, why challenge it? Also Ros is very proud of being autistic.

 

Gardenia

[Lucas]

Because I cannot agree to disagree with harm to myself.

[Gardenia]

Watching Pete in the Big Brother House has been a revelation to me. This show may well be full of geeks and freaks but they 'ALL' appear to have accepted Pete warts and all because the way Pete is is part of the person he is. He may not have AS but he can verbally stim for England guys

 

Question - Would we take a wheel chair away from a child in Centre Park so that they looked normal and fit in? What is it with wanting people with autism to look normal and fit in. An inability to accept the disability perhaps

Oracle

 

Oracle do you think the first paragraph has double standards. First calling the contestants geeks and freaks and then saying they have accepted Pete as the person he is. Should we not accept that the 'geeks and freaks' as you say, should be accepted that they want enormous breasts or like to dress as the opposite sex e.g. Would you be calling someone with a dx a geek or freak?

 

To answer your question about the wheelchair, this is my answer. No I would not want to take the child away from its wheelchair to make him look normal and fit in. I'd give him the wheelchair to enable him to access this mainstream world. The wheelchair was an intervention to his disability and where possible I will use interventions to help my son.

 

Gardenia

[Lucas]

But you do not give a person without the use of their legs stilts fitted to a part of the body they can work and then make them do the difficult task of pretending they can walk so they fit in better. You give them the means to live a good life as a person without leg use, without making them jump through difficult hoops to make them more acceptable.

[oracle]

Oracle do you think the first paragraph has double standards. First calling the contestants geeks and freaks and then saying they have accepted Pete as the person he is. Should we not accept that the 'geeks and freaks' as you say, should be accepted that they want enormous breasts or like to dress as the opposite sex e.g. Would you be calling someone with a dx a geek or freak?

 

It's the media who is referring to those in the house and geeks and freaks and they are including Pete in that statement - my point was that if the people in the house are a cross section of the society that we live in today they are very accepting of Pete and his condition. I have yet to see anyone bat an eye lid - but I only tune in and out in short bursts. In an ideal world we would all be accepting of everyone no matter what but I doubt it will ever happen

 

Lucas said

 

But you do not give a person without the use of their legs stilts fitted to a part of the body they can work and then make them do the difficult task of pretending they can walk so they fit in better. You give them the means to live a good life as a person without leg use, without making them jump through difficult hoops to make them more acceptable.

 

and I have to agree with him here.

 

I also quoted Roz Blackburn who I thought was a wonderful speaker and who came across as being comfortable in her own skin - which is what I want for both of my sons. However there was much of her talk that I did not agree with and came away very worried that many of the professionals attending would use her words to strengthen their claims that children with autism should not be given special treatment and should be treat like every other NT child in which ever classroom.

 

I often listen to people and share some of their opinions but not all. That's because I'm me and they are themselves.

 

Oracle

[barefoot wend]

Surely it is up to the asd individual themseves to decide whether or not to flap, whatever we may want as parents. We can teach them what we like but as an adult they will make their own choices, and rightly so.

 

The man in the pool was probably very aware that he was excited and was happy exhibiting this excitement. If he was worried by how others viewed him he would, presumably, have inhibited the reaction.

 

Barefoot

[Gardenia]

But you do not give a person without the use of their legs stilts fitted to a part of the body they can work and then make them do the difficult task of pretending they can walk so they fit in better. You give them the means to live a good life as a person without leg use, without making them jump through difficult hoops to make them more acceptable.

But that was not the question Lucas.

 

 

In an ideal world we would all be accepting of everyone no matter what but I doubt it will ever happen

I often listen to people and share some of their opinions but not all. That's because I'm me and they are themselves.

 

I second that Oracle.

 

 

Gardenia

[madmooch]

I have seen Ros Blackburn, and like many didn't agree with some of what she said, but she did mention she still handflaps.

She said she had been to the local waterfowl park to see the ducklings (she calls fluffy's) and when she see's them she starts hand flapping and occasionally she does get comments from ignorant poeple but she said it doesn't bother her at all, her carer's are more bothered than her!

When she said that it made me think of H when he flaps when he's enjoying something and it really makes me happy to see him flap ( honestly!) then i know he's really happy.

 

 

Clare

[baddad]

But you do not give a person without the use of their legs stilts fitted to a part of the body they can work and then make them do the difficult task of pretending they can walk so they fit in better. You give them the means to live a good life as a person without leg use, without making them jump through difficult hoops to make them more acceptable.

 

 

By the same token, Lucas, would you encourage someone who CAN use their legs but chooses not to because they haven't yet seen the personal advantage of doing so to continue not to do so, or would you try to support them toward a more independent lifestyle by helping them to SEE the personal advantage? That's a hugely INAPPROPRIATE example I know, but in terms of autism it is often that KIND of conceptual understanding that is compromised. i'm not saying you should 'force' somebody who has made a CONSIDERED opinion, but I do believe you should enable them to MAKE that considered opinion if they have the capacity to do so...

 

L&P

 

BD

[bid]

But a fine line between 'enabling' someone and 'deciding what is best' for someone...

 

Bid

[baddad]

But a fine line between 'enabling' someone and 'deciding what is best' for someone...

 

Bid

 

Absolutely! And the dynamics are such that except in the most 'obvious' scenarios it's almost impossible for the external 'casual' observer to get a handle on... I know some parents who I think are 'too soft' and others who i think are 'too hard' on their kids (AS or otherwise!), and I am sure that there a others who see my interactions with my son in exactly the same ways.. Who's right/who's wrong? Who knows??

I would, however suggest that the fine line you detail above needs an extra 'point or two along it... one would be 'disabling' which I think is a very real possibility if you make judgements about what people can and can't achieve on the basis of a diagnosis rather than on a 'holistic' assessment.

 

L&P

 

BD

[Stephanie]

Obviously still a heated debate - most of us still agreeing to disagree.

 

As well as some parents wanting their children to fit in better to society .. some children do too. My son is desperate to be normal and just like everyone else and I know that he cares what people think of him because he gets upset and reacts to criticism. He doesn't yet know his place in life, but wants to be part of the bigger picture that he sees around him.

 

Probably like the guy off Big Brother, he wouldn't want to win because of the sympathy vote .. another Michelle McManus/Rick Waller/Gareth Gates type thing (and where are they now?)... lets all vote the underdog, the fatties, the ones with speech impediments and tourettes ... "oh they are so brave etc etc". .....Saying that, I actually quite like Pete, but not because he's got tourettes!

[Lucas]

By the same token, Lucas, would you encourage someone who CAN use their legs but chooses not to because they haven't yet seen the personal advantage of doing so to continue not to do so, or would you try to support them toward a more independent lifestyle by helping them to SEE the personal advantage? That's a hugely INAPPROPRIATE example I know, but in terms of autism it is often that KIND of conceptual understanding that is compromised. i'm not saying you should 'force' somebody who has made a CONSIDERED opinion, but I do believe you should enable them to MAKE that considered opinion if they have the capacity to do so...

 

Brain-fart! I have absolutely no idea what any of that meant.

[Gardenia]

I wasn't sure where or IF I should post this but here goes.

 

On the forum there is another topic about our children becoming more obvious as they get older. As someone has said what looks cute at 4 years old doesn't as they get older.

 

I know of one lad who constantly strokes ladies with long hair whether they be a stranger or not, when does Mum put a stop to this. Some might say don't as he is having too much fun, but others may feel it is inappropriate. A lot of people who have replied say they will not stop their child from stimming, but I wonder if they will as their child gets older?

 

After reading both topics I think I will stop ds hand flapping. We all have to conform to some degree whether we like it or not.

 

Gardenia

[Sallya]

I was watching my son playing on the beach the other day, he was making holes and tunnels and throwing the sand around, completely happy....he was also flapping his hands...I never noticed him do that before...it's funny what you notice if you just watch for a while....doesn't seem anything that needs to be stopped..and as I've only just noticed..well if he's happy.....maybe it's something that I've already unconsciously accepted.

[Suze]

my boy is older.......I guess...he,s 11.If he was touching anyone like you suggest Gardenia I would immeadiately tell him he should,nt and why.My son flaps about and can get very animated when happy and excited...a bit Basil Fawlty/Mr Bean...skipping about etc.But I have found as he has grown into his ASD to celebrate a little of what his autism has given him.For instance if I said to him, don,t dance about like that, he would ask me why?..........and this is the reason why I feel it would,nt be right to stop his flappiness, because I,d have to explain to him that he looks different, draws attention to himself, and could provoke unkind comments.When my boy was 6/7 he was,nt yet dx...he was going through a terrible time at school, low self esteem,no confidence etc.He was referred to camhs as the school felt he was depressed.When we subsequently recieved his ASD dx.My son has since grown into who he his, he knows he is different, he knows he has ASD...aswell as dyslexia and dyspraxia(he likes to tell people if they ask), he is a happier boy now than when he was 7 and confused about the world and why he was the way he was.I could,nt undermine him by suggesting his quirks were wrong,but I would stop him making others uncomfortable if he touched them etc.

[Lucas]

Then I would reccomend you identify all the stims you do Gardenia and see how long you cope without them yourself before you make that decision for another.

[Flora]

As someone has said what looks cute at 4 years old doesn't as they get older.

 

 

Gardenia

 

The way I understand it is that autistic children/people don't stim because it's 'cute'... they stim in reaction to something or as a coping mechanism. As far as I'm concerned stimming is a reflex. Anyone who has tried to stop stimming with success has either achieved a cooincidental result or the child has replaced that particular stim with something else.

 

Of course we have to stop stimming when it becomes inappropriate (Wendy Lawson tells an outrageous but funny story about her autistic son!!! won't go into it here though) but the title of this thread is 'hand flapping'... which is neither inappropriate or offensive so why should that be stopped??

 

Lauren

[oracle]

Stims do not usually involve other people so it's not quite the same as touching someones hair or anywhere else for that matter. I am a staunch supporter of the 'no touch' rule. It's so much easier than trying to say where you are allowed to touch, in my opinion. It is true that most NT's and some people with disabilities do have to conform. However I have a friend who have a son with severe Cerebal Palsy and would never be able to stop himself from drooling no matter how much his Mum or anyone else might want him to (she does not because she accepts that he can not) Where do you draw the line between a disability which we accept warts and all and a disability which it is acceptable to try and alter?

 

I have given a great deal of thought to my own stims - which I was mostly unaware of until Lucas made his posts - and my goodness do I have some. The one I appear to do most is sniffing everything. I don't wear anything or eat from anything until I have sniffed it. I tried not doing it for a couple of days and I felt

 

My middle son gave up his own very visible stims when he realised that it was inappropriate in public places. I tend not to force the pace because things have a nasty habit of coming back and biting me on the bum if I do

 

Oracle

[lil_me]

Know what you mean there, just wish that when they bite my bum they would take a part of it with them

 

Couldn't and wouldn't stop the little things I do to cope either