Getting out, doing stuff together

[sawjd]

Hello everyone,

 

I now have an idea why as a family we don't get invited out much/not at all. Its not just sometimes to do with MS its to do with K not taking part in stuff. Well i have warned them enough about K.

 

I would really like k to get more involved with doing activities but don't know how to get him involved more. My nieces came out with us to visit a farm on Tuesday.

 

One niece has a little boy and he came along and loved it, K however did not want to touch any animals, was reluctant to go on any rides and just wanted to play football. He hated the swings and wanted to get off. I could see my nieces constantly encouraging k to do this and that and the more they kept on the more he refused and they just gave up. I did tell them what he was like but they would not listen. This farm was a more like a great big park. My great nephew got to hold an owl, stroke a skunk, ferret, guinea pig. K could not stand the smell and wanted to get out into the open. All other children held pets and stroked animals but K just went off.

 

K does not want to go swimming because of the water, he doesn't do pony rides, i am just running out of ideas. The one thing he does love is golf but his temper (when he misses) gets the better of him despite my threats that i won't bring him if he does not behave himself. We can't keep going to golf. We have six weeks of holidays and i would like him to mix more. The last day of school was bad. They had a fancy dress party and he can't stand dressing up. He wanted to go home when he saw what they were wearing. The teachers tried to get him to dress up as a wasp but k was having none of it. He said he was wearing a yellow shirt so he was a wasp already (anything just to get out of dressing up).

 

I have asked K what would he like to do and he just wants to play his games indoors. At least we won't get sunburnt.

 

Anybody else have this difficulty. How do you cope?

 

Best wishes, thanks for reading,

 

sarni

[Sally44]

My son also cannot do 'farms' because of the animal smells and because of his fear of getting dirty or smelly.

We keep alot of animals ourselves and it is a shame that he cannot enjoy it as the rest of us do.

But if that is your child's experience, then you just have to believe that that is what they experience. And if that is the case, then it is not a pleasurable experience for them.

So alot of his difficulties maybe sensory based.

Or it could be fear of being hurt in some way, especially if he is tactile sensitive. Even holding a chick or a mouse can hurt if they dig their claws in and you are sensitive to touch.

If we go to anything like this then my son is usually the one sat on the tractor, or some other kind of machinery.

He is okay to touch any animal as long as they don't smell.

He also hates mud and feeling 'sticky hands' etc.

Just try to work around what you can.

[Suze]

Not sure how old your boy is, I guess he is still at primary school?.......my son always loved farms as he was obsessed (still is ) with tractors , he would,nt touch the animals he just spent 2 hrs going round on the pedal on tractors

 

you are not alone as sally said some kids really struggle with those type of things and my son also has great difficulty with smells (better now he is older 14yrs ) and would vomit and get bad headaches.

Have you though about museums as they have a very ordered environment, bike rides, a picnic in the park and a game of football, I would try and tie in any day out with his interest /obsession, so if you live near me a visit to Old Trafford would be on the cards .The most important thing though is not to beat yourself up about stuff, our kids just know what they like and know what they don,t like..........have a look on the internet together for days out let him dictate a bit.Best of luck, suzex

[Suze]

oh and you would,nt get me near a ferret either

[JsMum]

oh and you would,nt get me near a ferret either

Lol you would get me anywhere near a skunk! now they do smell, but a fasinating animal!

 

JsMumx

[JsMum]

 

Does your local Authority do any Activities for AS/ASD or similar needs groups?

 

I contact your local Authority to see if there is anything spersific to your sons needs and there may be some disability activity sessions on, in the next local authority to us there is a full weeks activitie of all sorts of sports and recreation every day and they can go at the childs pace and ability, it is very much enjoyed by all who attend and are of all various of disabilities.

 

I agree with Sally that a lot of what you described the way your son behaved is possibly Sensory based, so they will need a gradual aproach, slowly and at his pace and like Sally look at seeing if there is anyway of introducing some small pets to your home where he is familair to his own enviroment and where he has access to washing his hands after.

 

A lot of the reasons I have difficulties to attend activities is usuallly the actual Transition, going from one enviroment to the next, he needs planning and warnings and explanations about the trip well in advanced.

 

If he is worried about been dirty you could take your own cleaning/sanatising equiptment like wetwipes/ hand wash ect....

 

I know its hard getting a ballance, because J does need chill out time at home where he feels safe but he also needs the good old fresh air, and if he is stuck in all day he is hopeless in the evenings and throw the night, he is a very energetic young man and needs his activities to burn that access off, so I do ensure he does something that is on his callander and he understands now that staying in all day doesnt do anyone any good.

 

It might need a bit of planning and preparing but even if he does one activity a day that would be better than none at all.

 

Get together and make a list of ideas, I have a few here that J loves.

 

Absailiing, Rock Climbing, Bike Riding, Walking in the countryside, Survival Skills such as Making fires, a shelter of sticks, making a make shift shelter, cooking somthing like a pan of water for a hot chocolate or tea.

 

1-1 Swimming lessons, what about some Golf tuition, some 1-1 sessions, maybe use it as a reward if he participates in other activities or tries it at least.

 

Trampolining lessons, ie Rebound therapy.

 

Photography, we take waterproofe camaras and take pictures under the water, that is really cool and we take games to play in the pool such as these seals that go to the bottom and you have to dive to get them, or floating sticks and they have to swim or paddle to them, the sticks have different points on them.

 

If it is sensory based issues that your son has then a referral to an Occupational Therapist may be able to support his sensory issues and there is a couple of books out there that help children with sensory issues one particular one is called

 

The out of Sync Child

The out of Sync child has fun.

 

There is now more updated books similiar to this now.

 

It maybe that he requires some sensory intrigration therapy or OT sessions to support him into slowly getting interested in other activities.

 

JsMumx

 

 

 

[trekster]

Has your son had a sensory assessment? i can see hes got clothing and smell issues which to an extent i have as well.

 

Tramplonining? After school clubs, footie club something thats connected with his interests.

 

As for the fancy dress i would have just kept my kid off that if he finds it so distressing. In fact my relatives kept me off the last 2

days and no one complained i wasn't there as we never did any work. i went to school to learn something and do work not to have fun

as that's what weekends were for after homework.

 

i would try getting a book about autism and sensory stuff and see what you can do to work on that. Then encouraging him to do something

different should be easier. Good luck,

[baddad]

Hi sawjd -

 

I think the most important thing is for K to know that regardless of whether he enjoys things or not other people do - including you/your/partner/any other siblings. You shouldn't not do things you want to do purely because K won't like doing them, Not wanting to pet the animals is a reasonable choice for him to make, so I'm not suggesting he should be 'pushed' to do so, but his not wanting to pet them shouldn't become a barrier to other people doing so. Or going swimming, or playing on the swings, or going to a party etc. If he choses not to do them, that's fine - he can sit by the side of the pool or the beach while others swim, or sit on a bench while others swing or wear his normal clothes and just mope around while others party in fancy dress... If he has any interest in reading or comics or has an MP3 player or a gameboy he can do those things while he's waiting...

But what he shouldn't be doing is dictating where and when and what the whole family does, purely on the basis of his indifference or (possibly, given what you've said about his temper when things go wrong at golf), through disruptive and controlling behaviour.

Chances are, if you give him 'Hobson's choice' he will join in with some things, even if he starts out by saying he hates them. If the consequence of not wanting to do things is that he usually gets to do what he wants to do regardless of what anyone else wants to do (like spending seven weeks summer holidays indoors with the curtains drawn playing video games) then he will continue to present you and yours with that 'Hobson's choice'...

 

I honestly think that bending over backwards to try to find things he's interested in doing will be a wasted effort. So do things you are interested in. That way, whatever hours you do spend stuck indoors listening to his games console twittering in the background will at least be balanced with something less uninteresting for you. And whatever the reasons for his lack of interest, your own and the rest of the families need for stimulation is equally worthy of consideration. And whatever way you look at it his is much more likely to find something he does like doing by 'doing' than by not doing.

 

Hope that's helpful

 

L&P

 

BD

[MelowMeldrew]

Hello everyone,

 

I now have an idea why as a family we don't get invited out much/not at all. Its not just sometimes to do with MS its to do with K not taking part in stuff. Well i have warned them enough about K.

 

I would really like k to get more involved with doing activities but don't know how to get him involved more. My nieces came out with us to visit a farm on Tuesday.

 

One niece has a little boy and he came along and loved it, K however did not want to touch any animals, was reluctant to go on any rides and just wanted to play football. He hated the swings and wanted to get off. I could see my nieces constantly encouraging k to do this and that and the more they kept on the more he refused and they just gave up. I did tell them what he was like but they would not listen. This farm was a more like a great big park. My great nephew got to hold an owl, stroke a skunk, ferret, guinea pig. K could not stand the smell and wanted to get out into the open. All other children held pets and stroked animals but K just went off.

 

K does not want to go swimming because of the water, he doesn't do pony rides, i am just running out of ideas. The one thing he does love is golf but his temper (when he misses) gets the better of him despite my threats that i won't bring him if he does not behave himself. We can't keep going to golf. We have six weeks of holidays and i would like him to mix more. The last day of school was bad. They had a fancy dress party and he can't stand dressing up. He wanted to go home when he saw what they were wearing. The teachers tried to get him to dress up as a wasp but k was having none of it. He said he was wearing a yellow shirt so he was a wasp already (anything just to get out of dressing up).

 

I have asked K what would he like to do and he just wants to play his games indoors. At least we won't get sunburnt.

 

Anybody else have this difficulty. How do you cope?

 

Best wishes, thanks for reading,

 

sarni

 

My lad has been like that since 5 years of age he is now 15 and no change, does NOT want to do anything with anyone. His own thing not much else. Your mistake (And mine), was thinking we can change that aspect in our autistic child, you can't. If you are trying to get him to be similar to every other child you are for a lifetime of disappointments sadly. Forget all that advice about local area provisions etc, that's the hype for the most able autistic not the rest, our kids won't want to know about it.

[justine1]

My lad has been like that since 5 years of age he is now 15 and no change, does NOT want to do anything with anyone. His own thing not much else. Your mistake (And mine), was thinking we can change that aspect in our autistic child, you can't. If you are trying to get him to be similar to every other child you are for a lifetime of disappointments sadly. Forget all that advice about local area provisions etc, that's the hype for the most able autistic not the rest, our kids won't want to know about it.

How do you know? Unless you know the child first hand how would you possibly know that he "wont want to know about it." I do think that there comes a point where as a parent you may give up and wait and see(which I suspect is what has happened in your case) but I believe he may like something else.The farm may not be for him but a cinema might.Some children with sensory problems only have some sensitivity to some of the senses,like the OP mentions clothes/touch and smell(this is the same as my four yr old) he may not be so sensitive to sound/bright lights so may enjoy the cinema.Whereas my 6 yr old is sensitive to sound and only slightly to touch,he loves going to the farm.

 

All children are so different and as BD said, I dont think one child should dictate where the family should go.Surely its better to take that chance than to be stuck indoors all the time which is not healthy for anyone.I am not saying your approach is wrong but its what has worked for you,and may not work for the OP.

[coolblue]

This could be a description of my son. His sensory issues have got worse with age (he's just 12) and also he has tried lots of activities and found them difficult, so he doesn't want to try them again. Even a ramble organised by a local autism charity turned out to be a nightmare because he didn't have the hyperactive-shrieking kind of autism that the other kids had. My guess is that parents with kids with sit-in -the-bedroom-with-the-curtains-drawn kind of autism don't even try to get them to join in things like that.

 

However, what he does like is quiet country walks, and he's even overcome his fear of dogs in order to do them. We're working up to joining the local ramblers, who are mainly retired, because they are not likely to shriek at him and charge towards him at high speed. Or jump up him barking. He also likes go-karts and climbing frames - when there's no one else around.

 

Basically, start from what he does like and work up from there. As baddad says, it's important for him to realise that he's entitled to like or not like things, but he shouldn't stop other people enjoying themselves, so perhaps you could take it in turns to choose activities and he could take something to do to stop him getting too bored while he sits it out when it's someone else's turn to choose.

 

cb

[baddad]

so perhaps you could take it in turns to choose activities and he could take something to do to stop him getting too bored while he sits it out when it's someone else's turn to choose.

 

cb

 

Meant to suggest that but got sidetracked by haircuts and son's golf lesson! I think we also have to be careful about not making assumptions about things like 'hypersensitivity' just because this is the case for some autistic people (I have noticed that the children of many parents who claim 'hypersensitivity' for them seem to have a very selective variation of it - not, of course, suggesting that that is the case for anyone highlighting it here but it is something I've seen in many cases I have witnessed first hand). It may just be in this case that he doesn't like farmyard smells or dressing up. Many children don't, and it has nothing to do with 'hypersensitivity'. Think of it this way - some NT kids would happily wear a rubber skindiving suit, flippers and snorkels all night for a fancy dress, yet have a 'meltdown' at being asked to wear a shirt with buttons down the front and a pair of black trousers to school or even granny's funeral. The opposite might apply for an AS kid - but because they have no interest in winning a fancy dress rather than because they have a particular liking for school uniform or a dislike for rubber.

 

L&P

 

BD

[coolblue]

You're quite right, we can't "assume" hypersensitivity, but given that the OP's description fits my son exactly - even down to the golf, but we haven't managed to do this properly yet - and given that sensory hypersensitivity is pretty common amongst people with autism, particularly children - I think sensory hypersensitivity is a pretty safe bet.

 

Bear in mind that sensory modes are complex. So a child might be hypersensitive to some sensations and hyposensitive to others - in the same sensory mode. Many children with autism are not very sensitive to pain, but are very sensitive to light touch, for example. Physiologically, that's perfectly possible, because there are a number of different types of touch receptor in the skin and muscles, specialising in specific types of stimulus.

 

cb

[MelowMeldrew]

How do you know? Unless you know the child first hand how would you possibly know that he "wont want to know about it." I do think that there comes a point where as a parent you may give up and wait and see(which I suspect is what has happened in your case) but I believe he may like something else.The farm may not be for him but a cinema might.Some children with sensory problems only have some sensitivity to some of the senses,like the OP mentions clothes/touch and smell(this is the same as my four yr old) he may not be so sensitive to sound/bright lights so may enjoy the cinema.Whereas my 6 yr old is sensitive to sound and only slightly to touch,he loves going to the farm.

 

All children are so different and as BD said, I dont think one child should dictate where the family should go.Surely its better to take that chance than to be stuck indoors all the time which is not healthy for anyone.I am not saying your approach is wrong but its what has worked for you,and may not work for the OP.

 

I know my child doesn't. My child TOTALLY dictates how my family lives, there is no way you could ignore it. We've tried the options, they didn't work and there are no more of them. I am just a bit cheesed off at present sorry, I've had a very difficult 2 weeks with my son, as he is presenting new issues and getting bit aggressive, and very hyper all of a sudden, which we haven't really had at all, it's always been the silent passive nothing response mostly, I had a nurse yesterday, a Dr today, all they say is "This is what Autistics do..." and then go again ! thanks for nothing really, I KNOW what my autistic does ! (I wanted to know what respite I can get, and what will help HIM). What are medical people for anyway if that is all the advice they can give ! I have a referral to cognitive consultant, but the list looks a mile long and then some, so no examinations no treatment no therapy, and no assessments until then. And that has taken 15 years...

[baddad]

and given that sensory hypersensitivity is pretty common amongst people with autism,

 

But is it? There's this thing with autism that if one person with autism has something then it becomes accepted that it's part of autism and there can't be any other explanation. As soon as you stop looking at other possible explanations it becomes a self-fulfilling prophecy for anyone with autism who has a standard grade like/dislike or aversion...

The same applies, IMO, to food/taste sensitivity/clothing and more behavioural issues than you could shake a stick at. As I say, my own experience is that many of these things seem to be very selective - and that the very selectivism has also now become part of the bigger myth. I can watch TV programmes any day of the week about people who only eat chips or cheese or biscuits or whatever - none of whom are autistic. I can watch three shows a day on TV about children whose behaviours are out of control despite their parents doing 'absolutely everything possible' (until 'supernanny' or the drill sargeant at boot camp come along) to control their behaviours, and none of them are autistic... etc etc etc. Add autism to the mix, though, and suddenly it's accepted that there's nothing can be done and no other possible explanation other than that it is a manifestation of autism.

 

Anyhoo - That's my, opinion, I don't expect everyone to agree with it and that's fine, we can agree to differ. But if you wanted any further evidence about the 'self-fulfilling prophecy' it's here in this thread:

The OP said:

 

,K could not stand the smell and wanted to get out into the open.

and

They had a fancy dress party and he can't stand dressing up.

 

and these have been taken as indications of hypersensitivity to smells and hypersensitivity to certain fabrics, and suggestions of hyper 'touch' sensitivity, dirt phobia and... (I only read back a couple of posts so there maybe many more)...

 

And the more autistic kids casually diagnosed with those, the easier it is to generalise them to other autistic kids with any sort of aversion to anything.

 

Anyhoo - that's kind of wandering from the point, so I'll bow out now if I may, but the point I was making was that generalisations are dangerous, limiting and unhelpful, and it could be (is actually more likely to be) that K doesn't like dressing up, and that as he doesn't like petting farm animals he doesn't see any point in standing in a shed with them and their stinking poo. Both of those seem very sensible to me, and don't need any wider theorising to explain them.

 

L&P

 

BD

[JsMum]

but the point I was making was that generalisations are dangerous, limiting and unhelpful, and it could be (is actually more likely to be)

 

but then your view is also Generalising too, there is strong possibility it is sensory, but your view is also possible, but the fact there is many children with Autism with sensory issues the geralising consideration is probably more understandable by other parents here, and wide with child with Autism, and the more complex condition is called Sensory Processing/intregration Disorder very common with Autism, where a child can have over sensory and under sensory issuess and a lot of it is how the mood of the child is in the first place for example J managed over half an hour in a supermarket the other day, but a week ago he couldnt bare 5 mins because he was already very stressed and anxious so the Sensory issues increas, as Anxiety increase the sences, this is not generalising in my experience as I see the pure distress J is in when dealing with under and over sensory issues.

 

JsMumx

 

Edited July 29, 2010 by JsMum

[justine1]

I dont mention hypersensitivity in my post at all.I do however see a HUGE difference between my NT boys and my other two (even though Dan has no dx) with regards to being oversensitive to certain things.For example Dan has major issues with clothes especially underpants and socks,none of my other boys react the way he does,he doesnt have a meltdown he does cry and says it hurts.My mum has a dx of SID(recent) as does my one nephew,so when she visited last year she could see that Dan presented much of the same signs.I am not jumping to conclusions but just stating what we have observed as a family(by the way my mum has 20years experience working with kids,three have been ASD.)

 

In fact Sam has recently been to the audiologist,after going for a hearing test,and he has been given a dx(or whatever you want to call it)of over sensitivity to sound.

I dont say he has hypersensitivity,I just take it as part of his ASD.

 

Point is,I wouldnt want my child/ren to be distressed when we go out,but at the same time they may also adjust to certain things if given the chance,it all depends on the child.

 

 

[coolblue]

But is it? There's this thing with autism that if one person with autism has something then it becomes accepted that it's part of autism and there can't be any other explanation. As soon as you stop looking at other possible explanations it becomes a self-fulfilling prophecy for anyone with autism who has a standard grade like/dislike or aversion...

The same applies, IMO, to food/taste sensitivity/clothing and more behavioural issues than you could shake a stick at. As I say, my own experience is that many of these things seem to be very selective - and that the very selectivism has also now become part of the bigger myth. I can watch TV programmes any day of the week about people who only eat chips or cheese or biscuits or whatever - none of whom are autistic. I can watch three shows a day on TV about children whose behaviours are out of control despite their parents doing 'absolutely everything possible' (until 'supernanny' or the drill sargeant at boot camp come along) to control their behaviours, and none of them are autistic... etc etc etc. Add autism to the mix, though, and suddenly it's accepted that there's nothing can be done and no other possible explanation other than that it is a manifestation of autism.

 

>>>>>>>>>>>>>

 

L&P

 

BD

 

There was quite a bit of work done on this in the 1960s/70s. There's a really good review paper by Rogers & Ozonoff at

 

http://www3.interscience.wiley.com/journal...=1&SRETRY=0

 

This line of research petered out in the 1980s when 'psychological' models took over. There's a lot of evidence that people diagnosed with autism have sensory hyper- and hyposensitivities. Trouble was, studies tended to assume that everybody diagnosed with autism had the same condition, so it was concluded that there was no typical pattern, therefore sensory hyper/hyposensitivities were not a characteristic of autism.

 

Of course people not diagnosed with autism can have sensory hyper/hyposensitivities too; but their sensitivities might not result in significant impairments in social interaction, communication or restricted or repetitive behaviours, so they don't qualify for a diagnosis.

 

Interest has revived recently. ARC in Cambridge have done some work on visual hyperacuity and tactile sensitivity, and there's a fairly robust body of work on visuo-spatial and auditory processing abnormalities.

 

I would question whether it follows that because a child has sensory sensitivities 'nothing can be done'. The sensory sensitivities might not be curable, but desensitization techniques can be quite effective and children can be taught strategies to help them manage situations they find uncomfortable. But these often take time to be effective and in the meantime families still want to go out together, so a compromise might be the best short-term solution, if the child can tolerate it.

 

You have to start where the child is and work from there.

 

cb

 

 

[coolblue]

>>>>>>>>>>

 

I had a nurse yesterday, a Dr today, all they say is "This is what Autistics do..." and then go again ! thanks for nothing really, I KNOW what my autistic does ! (I wanted to know what respite I can get, and what will help HIM). >>>>>>>>>>>>>

 

Exactly. It doesn't matter what diagnosis the child has, if we don't know what causes it - what the child and the family and the school etc etc need is advice on what to do to best support the child and the family with their specific difficulties. I can understand why doctors don't know what might improve the child's 'symptoms', but what's clear is that no one in healthcare has been monitoring the data and looking at what support works best for specific problems.

 

cb

 

[trekster]

Hi sawjd -

 

I think the most important thing is for K to know that regardless of whether he enjoys things or not other people do - including you/your/partner/any other siblings. You shouldn't not do things you want to do purely because K won't like doing them, Not wanting to pet the animals is a reasonable choice for him to make, so I'm not suggesting he should be 'pushed' to do so, but his not wanting to pet them shouldn't become a barrier to other people doing so. Or going swimming, or playing on the swings, or going to a party etc. If he choses not to do them, that's fine - he can sit by the side of the pool or the beach while others swim, or sit on a bench while others swing or wear his normal clothes and just mope around while others party in fancy dress... If he has any interest in reading or comics or has an MP3 player or a gameboy he can do those things while he's waiting...

But what he shouldn't be doing is dictating where and when and what the whole family does, purely on the basis of his indifference or (possibly, given what you've said about his temper when things go wrong at golf), through disruptive and controlling behaviour.

Chances are, if you give him 'Hobson's choice' he will join in with some things, even if he starts out by saying he hates them. If the consequence of not wanting to do things is that he usually gets to do what he wants to do regardless of what anyone else wants to do (like spending seven weeks summer holidays indoors with the curtains drawn playing video games) then he will continue to present you and yours with that 'Hobson's choice'...

 

I honestly think that bending over backwards to try to find things he's interested in doing will be a wasted effort. So do things you are interested in. That way, whatever hours you do spend stuck indoors listening to his games console twittering in the background will at least be balanced with something less uninteresting for you. And whatever the reasons for his lack of interest, your own and the rest of the families need for stimulation is equally worthy of consideration. And whatever way you look at it his is much more likely to find something he does like doing by 'doing' than by not doing.

 

Hope that's helpful

 

L&P

 

BD

 

Have i missed something here? i don't recall at the farm K stopping others from doing what they wished to do. i also don't feel K is manipulating and controlling his family it is just out of fear of the unknown. My mum has been obsessed with doing things as a family and that just doesn't help me sometimes. i wont stop them from doing things they enjoy but i don't resent them for doing them either.

 

[trekster]

How do you know? Unless you know the child first hand how would you possibly know that he "wont want to know about it." I do think that there comes a point where as a parent you may give up and wait and see (which I suspect is what has happened in your case) but I believe he may like something else. The farm may not be for him but a cinema might. Some children with sensory problems only have some sensitivity to some of the senses, like the OP mentions clothes/touch and smell (this is the same as my four yr old) he may not be so sensitive to sound/bright lights so may enjoy the cinema. Whereas my 6 yr old is sensitive to sound and only slightly to touch, he loves going to the farm.

 

i think the poster was referring to the lack of OT in their area. Provision for this in my area is poor as well. i have to make do with books and asked for a weighted blanket as a joint birthday/xmas pressie as my proprioceptive awareness was that bad!

 

i like going to the cinema provided a kid doesn't sit behind me again. i had my back kicked so badly i woke up with bad backache this morning. i have nothing against kids in general provided they dont kick me from behind (and carry on doing so when i complain to them). Grrrr his parent drove me mad as he didn't even try to stop his son or explain why his son was behaving that way. It was such an impossible situation and i was frozen unable to move from my seat to another as i would have got in the way of others.

 

There is also another factor some autistics like being loners and don't want friends or to be bothered with anyone else. Hard to tell whether anyones child is like that unless the kid directly says so.

 

i am also severely sensory overloaded daily (various things have helped up to a point) affects the whole spectrum even aspergers.

Edited July 30, 2010 by trekster

[trekster]

I know my child doesn't. My child TOTALLY dictates how my family lives, there is no way you could ignore it. We've tried the options, they didn't work and there are no more of them. I am just a bit cheesed off at present sorry, I've had a very difficult 2 weeks with my son, as he is presenting new issues and getting bit aggressive, and very hyper all of a sudden, which we haven't really had at all, it's always been the silent passive nothing response mostly, I had a nurse yesterday, a Dr today, all they say is "This is what Autistics do..." and then go again ! thanks for nothing really, I KNOW what my autistic does ! (I wanted to know what respite I can get, and what will help HIM). What are medical people for anyway if that is all the advice they can give ! I have a referral to cognitive consultant, but the list looks a mile long and then some, so no examinations no treatment no therapy, and no assessments until then. And that has taken 15 years...

 

That is absolutely disgusting. i guess writing to your MP or LA hasn't helped? i had to use my DLA backpayment to get my colorimeter/Irlen lenses as that treatment isn't offered on the NHS.

[trekster]

But is it? There's this thing with autism that if one person with autism has something then it becomes accepted that it's part of autism and there can't be any other explanation. As soon as you stop looking at other possible explanations it becomes a self-fulfilling prophecy for anyone with autism who has a standard grade like/dislike or aversion...

 

Depends on the literature you read. There is more to autism than the DSM-IV, you dont need me to tell you that. As has been mentioned before the approach to an autistic is different to an NT. For starters an NT will get it quicker than an autistic so bags of patience are needed. There seems to be the opposite happening and that being that whenever someone on here mentions "autism and x" that a number of parents insist that's not part of autism.

The same applies, IMO, to food/taste sensitivity/clothing and more behavioural issues than you could shake a stick at. As I say, my own experience is that many of these things seem to be very selective - and that the very selectivism has also now become part of the bigger myth. I can watch TV programmes any day of the week about people who only eat chips or cheese or biscuits or whatever - none of whom are autistic. I can watch three shows a day on TV about children whose behaviours are out of control despite their parents doing 'absolutely everything possible' (until 'supernanny' or the drill sargeant at boot camp come along) to control their behaviours, and none of them are autistic... etc etc etc. Add autism to the mix, though, and suddenly it's accepted that there's nothing can be done and no other possible explanation other than that it is a manifestation of autism.

 

Anyhoo - That's my, opinion, I don't expect everyone to agree with it and that's fine, we can agree to differ. But if you wanted any further evidence about the 'self-fulfilling prophecy' it's here in this thread:

 

i doubt it somehow since my views are often based on what a number of autistics and their parents have told me about sensory issues, selective eating, so called challenging behaviour etc. i dont base my views on the perspective of one person (as you appear to do).

 

As for there is nothing to be done............i think occupational therapy has been suggested for sensory issues, tomatis/listening program /AIT for hypersensitive hearing, gf/cf diets for selective eating/medical problems/food addiction. There is more than one way to resolve a problem. Actually once you have ruled autism out then explore other avenues as autism affects every aspects of an autistics life. i don't think it is a clear cut separation between "the kid" and "the kids autism". Somehow i think the "media exaggerating things" viewpoint which you had about the "young autistic and stagestruck" thread applies to the supernanny etc programs. i didn't see any mention of these issues not applying to NTs just that they applied to NTs in a different way and for different reasons.

The OP said:

 

 

and

 

 

and these have been taken as indications of hypersensitivity to smells and hypersensitivity to certain fabrics, and suggestions of hyper 'touch' sensitivity, dirt phobia and... (I only read back a couple of posts so there maybe many more)...

 

And the more autistic kids casually diagnosed with those, the easier it is to generalise them to other autistic kids with any sort of aversion to anything.

 

Anyhoo - that's kind of wandering from the point, so I'll bow out now if I may, but the point I was making was that generalisations are dangerous, limiting and unhelpful, and it could be (is actually more likely to be) that K doesn't like dressing up, and that as he doesn't like petting farm animals he doesn't see any point in standing in a shed with them and their stinking poo. Both of those seem very sensible to me, and don't need any wider theorising to explain them.

 

L&P

 

BD

 

Why is it that as soon as it applies to NTs as well its "not that bad"? The stick method doesnt work for all kids.

 

[trekster]

This could be a description of my son. His sensory issues have got worse with age (he's just 12) and also he has tried lots of activities and found them difficult, so he doesn't want to try them again. Even a ramble organised by a local autism charity turned out to be a nightmare because he didn't have the hyperactive-shrieking kind of autism that the other kids had. My guess is that parents with kids with sit-in -the-bedroom-with-the-curtains-drawn kind of autism don't even try to get them to join in things like that.

 

Also could be an issue of absolutes, it is either excellent or really bad and not in a grey area. Im having this issue telling the difference between a bad situation and a desperate one. i have moments when i hide in the safety of my house but fortunately something motivates me to go out. i have to push myself to go out and my driving lesson is one reason to go out. My sensory issues are literally that bad that it hurts my ears to type. i have to type fast to get the words out and i think i might be heavy handed on the keys but since im making the noise and expecting it i can tolerate it to an extent.

 

i fluctuate from raging depressed to shy and meek depressed.

However, what he does like is quiet country walks, and he's even overcome his fear of dogs in order to do them. We're working up to joining the local ramblers, who are mainly retired, because they are not likely to shriek at him and charge towards him at high speed. Or jump up him barking. He also likes go-karts and climbing frames - when there's no one else around.

 

Great stuff, you've found a way for him to participate and enjoy stuff without being overloaded.

Basically, start from what he does like and work up from there. As baddad says, it's important for him to realise that he's entitled to like or not like things, but he shouldn't stop other people enjoying themselves, so perhaps you could take it in turns to choose activities and he could take something to do to stop him getting too bored while he sits it out when it's someone else's turn to choose.

 

cb

 

im finding it hard to see where K was demanding others did what he wanted to do. OP mentioned k "wanted to play football" no mention of "k insisting the others played football with him using his rules and his way". It seems to me that K gently pushed the others away, i didn't see anything implied or otherwise about him cruelly excluding the other kids. K has severe sensory issues that are dramatically affecting his life, how can the original poster get some OT? Theres also the wallberger (sp?) protocol which is a way of brushing the kid so they are desensitised to sensory overload.

 

If K had sunglasses on would he go outside and play? i used to avoid supermarkets due to their lighting causing a problem when i walked around. i was dizzy under the supermarket lights. My family didn't realise why i was avoiding certain shops until they directly asked me why. i didn't realise they needed to know why i couldn't cope with those lights.

 

[trekster]

but the point I was making was that generalisations are dangerous, limiting and unhelpful, and it could be (is actually more likely to be)

 

but then your view is also Generalising too, there is strong possibility it is sensory, but your view is also possible, but the fact there is that many children with Autism with sensory issues the generalising consideration is probably more understandable by other parents here, and wide with child with Autism, and the more complex condition is called Sensory Processing/integration Disorder very common with Autism, where a child can have over sensory and under sensory issues and a lot of it is how the mood of the child is in the first place for example J managed over half an hour in a supermarket the other day, but a week ago he couldn't bare 5 mins because he was already very stressed and anxious so the Sensory issues increase, as Anxiety increase the senses, this is not generalising in my experience as I see the pure distress J is in when dealing with under and over sensory issues.

 

JsMumx

 

i concur with all your points here js mum.

[MelowMeldrew]

Also could be an issue of absolutes, it is either excellent or really bad and not in a grey area. Im having this issue telling the difference between a bad situation and a desperate one. i have moments when i hide in the safety of my house but fortunately something motivates me to go out. i have to push myself to go out and my driving lesson is one reason to go out. My sensory issues are literally that bad that it hurts my ears to type. i have to type fast to get the words out and i think i might be heavy handed on the keys but since im making the noise and expecting it i can tolerate it to an extent.

 

i fluctuate from raging depressed to shy and meek depressed.

 

Great stuff, you've found a way for him to participate and enjoy stuff without being overloaded.

 

im finding it hard to see where K was demanding others did what he wanted to do. OP mentioned k "wanted to play football" no mention of "k insisting the others played football with him using his rules and his way". It seems to me that K gently pushed the others away, i didn't see anything implied or otherwise about him cruelly excluding the other kids. K has severe sensory issues that are dramatically affecting his life, how can the original poster get some OT? Theres also the wallberger (sp?) protocol which is a way of brushing the kid so they are desensitised to sensory overload.

 

If K had sunglasses on would he go outside and play? i used to avoid supermarkets due to their lighting causing a problem when i walked around. i was dizzy under the supermarket lights. My family didn't realise why i was avoiding certain shops until they directly asked me why. i didn't realise they needed to know why i couldn't cope with those lights.

 

We can just as parents get bombarded with all sorts of reasons for everything, mostly we just try to deal as they come at us. If you are getting multiple issues I try to deal with my son's 3 obsessions, as well as a total no-no on communicating to anyone much and refusing to interact, he also has not sat down for months just relentless pacing up and down or outside running full tilt at everything. I just do not have the wherewithal to address them all simple as that. I just have no time to find out what drives most of it, or even if there is a way to address it, I am pinning hopes on an new assessment soon. I rather fear medication will be suggested, and I have been against that from day one...I've never asked for or considered it. Once you start there is no end is there ?

 

[sawjd]

Hello baddad,

 

Thank you for your reply, not very good though as its caused an arguement. I just wanted to ask one main question and this is 'Can you honestly be happy when your child is sitting in a void, and i am not talking sulking. Is it ok to be segregated and have one member of the family go off and the others left behind.

I like to think that meeting him halfway is better.

 

My sadness is that family i thought understood clearly don't and they are fed up with me when all i have done is encourage him to do stuff but they have never been there to see it in other situations. They make me feel like i am to blame. I can't put a child through what feels like torture to him, anymore. If we miss out on a few things so be it. I hope k will adapt and not be a lonely adult. He will find his way one day, until then we have to go with the flow.

 

 

Thank you for your input.

 

Best wishes

 

sarni

 

[A and A]

Have i missed something here? i don't recall at the farm K stopping others from doing what they wished to do. i also don't feel K is manipulating and controlling his family it is just out of fear of the unknown. My mum has been obsessed with doing things as a family and that just doesn't help me sometimes. i wont stop them from doing things they enjoy but i don't resent them for doing them either.

 

 

I think DB was just offering his help and advise, and the fact sawjd has posted here looking for advise on things to get K from just playing games indoors suggest K is manipulating the family. They should definitely not just do the things that keep k happy. Why should everything be about helping you? Every family has the problem of trying to please everybody when they go on an outing, it's rarely possible.

 

The hypersensitivity thing is overused excused not to try and do anything about it, the same way autism used as an excuse for bad behavior.

 

Anthony

[A and A]

Hello baddad,

 

Thank you for your reply, not very good though as its caused an arguement. I just wanted to ask one main question and this is 'Can you honestly be happy when your child is sitting in a void, and i am not talking sulking. Is it ok to be segregated and have one member of the family go off and the others left behind.

I like to think that meeting him halfway is better.

 

My sadness is that family i thought understood clearly don't and they are fed up with me when all i have done is encourage him to do stuff but they have never been there to see it in other situations. They make me feel like i am to blame. I can't put a child through what feels like torture to him, anymore. If we miss out on a few things so be it. I hope k will adapt and not be a lonely adult. He will find his way one day, until then we have to go with the flow.

 

 

Thank you for your input.

 

Best wishes

 

sarni

 

 

K is capable of making choices, he can choose to participate or not to, no body else should miss out just because K refuses to participate. It might sound harsh, but you shouldn't let K stop you doing the things that you and the rest of the family enjoy.

 

Anthony

Edited July 30, 2010 by A and A

[trekster]

We can just as parents get bombarded with all sorts of reasons for everything, mostly we just try to deal as they come at us. If you are getting multiple issues I try to deal with my son's 3 obsessions, as well as a total no-no on communicating to anyone much and refusing to interact, he also has not sat down for months just relentless pacing up and down or outside running full tilt at everything. I just do not have the wherewithal to address them all simple as that. I just have no time to find out what drives most of it, or even if there is a way to address it, I am pinning hopes on an new assessment soon. I rather fear medication will be suggested, and I have been against that from day one...I've never asked for or considered it. Once you start there is no end is there ?

 

i fully accept you are doing the best you can with a kid who has multiple issues. i am toying with the fact that i might need to go back on tablet risperdal. i have had 2 incidents today where i have attempted to explain aspergers to people who have no knowledge of it. One person asked if medication can control it (but came round to the idea that he innocently makes mistakes and a gentle approach works with him) another told me "hes not autistic" in a "you have no idea what you are talking about". im thinking erm im studying the subject and i am one.

 

i also fully accept that respite care is a joke in some areas and that parents are stretched to the limits. i am on my local NAS group and see parents tearing their hair out trying to get help and support for their distressed kids. No one can know everything about autism even me, or experts.

 

[trekster]

Hello baddad,

 

Thank you for your reply, not very good though as its caused an argument. I just wanted to ask one main question and this is 'Can you honestly be happy when your child is sitting in a void, and i am not talking sulking. Is it ok to be segregated and have one member of the family go off and the others left behind.

I like to think that meeting him halfway is better.

 

My sadness is that family i thought understood clearly don't and they are fed up with me when all i have done is encourage him to do stuff but they have never been there to see it in other situations. They make me feel like i am to blame. I can't put a child through what feels like torture to him, anymore. If we miss out on a few things so be it. I hope k will adapt and not be a lonely adult. He will find his way one day, until then we have to go with the flow.

 

Thank you for your input.

 

Best wishes

 

sarni

 

Sounds like the right attitude to me. My gran is often accused of being too soft on me when really she gets my aspergers more than the rest of my family. Saying that my sister and brother have shown flashes of understanding. There are some parents that dont get it and some families that dont get it either. This could be due to not wanting to accept autism and the consequences for that kid or some other prejudice. i wish you luck in your quest for helping your family. i would love to have a parent like you, keep up the good work.

 

[trekster]

K is capable of making choices, he can choose to participate or not to, no body else should miss out just because K refuses to participate. It might sound harsh, but you shouldn't let K stop you doing the things that you and the rest of the family enjoy.

 

Anthony

 

With all due respect K is not your son or mine only K can judge whether he can make choices or not. i know autistics that are unable to decide what to eat at meet ups even when they have planned them. One of our group could have gone into a diabetic coma if i hadn't of managed to say "im hungry i need 2 eat or im going to blow up". Which was the prompt for the indecisive asperger to just follow the crowd.

 

For the last time K didn't actively stop anyone from choosing to do their own thing. He didn't make them stop petting the animals on the farm. it is well documented that autistics are asocial not antisocial.

Edited July 30, 2010 by trekster

[trekster]

I think DB was just offering his help and advise, and the fact sawjd has posted here looking for advise on things to get K from just playing games indoors suggest K is manipulating the family. They should definitely not just do the things that keep k happy. Why should everything be about helping you? Every family has the problem of trying to please everybody when they go on an outing, it's rarely possible.

 

The hypersensitivity thing is overused excused not to try and do anything about it, the same way autism used as an excuse for bad behaviour.

 

Anthony

 

i strongly disagree with your views here "especially the implication that im selfish and dont care how others feel when in fact the opposite is true i care too much". i have no idea what it is like to be a parent and you have no idea what it is like to be autistic. However neither of us are the enemy. if i was using autism as an excuse for bad behaviour then why would i be trying to find ways to stop myself from upsetting people?

 

Once i realised my inability to eat was caused by proprioceptive issues i used my weighted blanket more, if anything it has enabled me to be less "annoying".

 

What i am suggesting is that K does something on his own and the kids do something on their own in the same location. Nothing about K insisting the kids only do what he wants to do. Gradually he will be able to blend in (or at least appear so).

[baddad]

Hello baddad,

 

Thank you for your reply, not very good though as its caused an arguement.

 

Unfortunately that happens a lot with my replies!

I'd sort of bowed out of this one, but as it's you, the 'OP', i'll come back in again....

 

I just wanted to ask one main question and this is 'Can you honestly be happy when your child is sitting in a void, and i am not talking sulking. Is it ok to be segregated and have one member of the family go off and the others left behind.

I like to think that meeting him halfway is better.

 

I agree meeting him halfway is better - so doing 'your stuff' one day ('your' being the rest of the family) and K's the next is meeting halfway. Just a guess, but probably, if you look at it closely, i wouldn't mind betting that the split is way less than 50/50, and that the biggest slice goes in K's favour?

As far as being happy when your child is sitting in a void, i honestly think that depends on how happy your child is sitting in a void. If it is genuinely what he/she wants, then the 'loss' I guess is our (the parent's) loss... In no way do I under-estimate that loss or the pain it causes, but if the child genuinely has no need or desire for the things we would wish for them it is our problem, not theirs.

 

My sadness is that family i thought understood clearly don't and they are fed up with me when all i have done is encourage him to do stuff but they have never been there to see it in other situations. They make me feel like i am to blame. I can't put a child through what feels like torture to him, anymore. If we miss out on a few things so be it. I hope k will adapt and not be a lonely adult. He will find his way one day, until then we have to go with the flow.

 

I can't speak for your family, of course, but if they feel you and the rest of your immediate family are 'missing out' because of K then it's only natural that they would feel it's unfair. It may not be that they 'blame' you, but they may feel that you are losing sight of the bigger picture; that you can't see the rest of the woods because of the one big tree that's obscuring it, especially if every time they try to get you to peer around the trunk something happens to pull you back behind it... sorry - a very overworked metaphor I know, but I hope it makes some sense.

I hope too that k will adapt and not be a lonely adult, but i do honestly believe for that to happen then the comfort zone has to be extended, and that, by definition, means pushing the boundaries rather than going with the flow.And regardless of whether the boundaries grow or not I don't think the whole family should be hostage to K's social 'needs' or lack thereof. The rest of you have social needs to, and they are equally powerful and equally valid. I suspect (but cannot, of course know) that 'torture' is something over an over-estimation for how it feels to k to be 'forced' to do things he doesn't want to do - which is the point i was trying to make about assumptions of hypersensitivity etc. The assumptions surrounding autism are invariably extreme, and that generally is based on little hard evidence but just on 'word of mouth' that that's how autism is - despite the very clear evidence that for many autistic people it most definitely isn't, and the equally clear evidence that non-autistic people can respond in exactly the same extreme ways if their circumstances enable them to do so. Basically, if extreme responses work for the individual and get them what they want they will enact them - and that applies equally to austistic or NT, or adult or child, just as long as the 'reward' keeps getting delivered.

 

Thank you for your input.

 

My pleasure. And even if it hasn't all been what you would want to hear I hope at least some is helpful, or reassuring or at the very least 'food for thought'.

 

L&P

 

BD

 

 

[coolblue]

>>>>>>>>>

 

The rest of you have social needs to, and they are equally powerful and equally valid. I suspect (but cannot, of course know) that 'torture' is something over an over-estimation for how it feels to k to be 'forced' to do things he doesn't want to do - which is the point i was trying to make about assumptions of hypersensitivity etc. The assumptions surrounding autism are invariably extreme, and that generally is based on little hard evidence but just on 'word of mouth' that that's how autism is - despite the very clear evidence that for many autistic people it most definitely isn't, and the equally clear evidence that non-autistic people can respond in exactly the same extreme ways if their circumstances enable them to do so. Basically, if extreme responses work for the individual and get them what they want they will enact them - and that applies equally to austistic or NT, or adult or child, just as long as the 'reward' keeps getting delivered.

 

 

 

>>>>>>>>>>

 

L&P

 

BD

 

'The assumptions surrounding autism are invariably extreme'. This statement is patently untrue and quite unhelpful. One only has to look at the variety of assumptions made by people on this forum. They vary considerably.

 

The fact that many assumptions are made on word of mouth but on little hard evidence does not mean that hard evidence does not exist. In the OP's case, the features of K's behaviour were almost identical to those exhibited by my son. To suggest that they might be caused by sensory problems is indeed an assumption, in the same way that any comment on someone one has never met is an assumption, but then I am very grateful to parents who have made similar assumptions about my son and said ' you could read this' or 'what we did was...'

 

It's also an assumption based on a substantial body of evidence. The evidence suggests that sensory processing is not consistent either between individuals, nor within individuals across time. That's because a) it's a complex set of processes, therefore lots of factors can contribute to its variation and it's subject to physiological fluctuation, due to changes in diet, sleep, activity level etc. Sensory processing also varies in so-called NT people (although I have yet to come across a watertight definition of what constitutes neurotypicality - as far as I can see, there's a lot of sensory variation across the whole population), so it's not safe to assume that someone without a diagnosis of autism doesn't have sensory issues.

 

How people respond in relation to 'rewards' is also quite complex. It's widely misunderstood. Especially in schools and by government where it is often assumed that behaviour can be shaped by a system of rewards and punishments. The fact that this patently doesn't work is studiously ignored. And that's with 'NT' people, not those with autism. People attach different weightings to rewards and punishments, and their response depends on the circumstances. On top of that the evidence suggests that autistic people do not respond 'typically' to reward and punishment. Since autistic people have been found to have variations in the neurotransmitters involved in the reward circuits of the brain, this is unsurprising.

 

I don't think it's safe to assume that just because a child doesn't want to go on an outing, acts up, and so the family goes home, that the child a) just doesn't want to go and is persisting in acting up because in the past they have got their own way. I have lost count of the number of times I have read of a parent discovering that their autistic child's reluctance to do something stemmed from the fact that their legs hurt if they walked too far, or they felt dizzy but didn't realise they were hungry, or they found noise or the number of moving people overwhelming - but they haven't been able to articulate their discomfort at the time.

 

In other words, they might be interested in getting their own way solely because they were in considerable discomfort if they didn't. A child with tears streaming from his eyes and saying they hurt, or with his hands clapped over his ears screaming 'my ears, my ears!' might indeed be laying it on thick in order to be allowed to go home and play computer games. On the other hand he might be experiencing 'torture'. I for one, would not want to push him too far out of his comfort zone, because whatever the reason he objects to the outing, doing so is is quite likely to make him even more resistant to outings in the future.

 

cb

 

 

 

 

 

 

 

 

 

 

[coolblue]

>>>>>>>>>

 

The rest of you have social needs to, and they are equally powerful and equally valid. I suspect (but cannot, of course know) that 'torture' is something over an over-estimation for how it feels to k to be 'forced' to do things he doesn't want to do - which is the point i was trying to make about assumptions of hypersensitivity etc. The assumptions surrounding autism are invariably extreme, and that generally is based on little hard evidence but just on 'word of mouth' that that's how autism is - despite the very clear evidence that for many autistic people it most definitely isn't, and the equally clear evidence that non-autistic people can respond in exactly the same extreme ways if their circumstances enable them to do so. Basically, if extreme responses work for the individual and get them what they want they will enact them - and that applies equally to austistic or NT, or adult or child, just as long as the 'reward' keeps getting delivered.

 

 

 

>>>>>>>>>>

 

L&P

 

BD

 

'The assumptions surrounding autism are invariably extreme'. This statement is patently untrue and quite unhelpful. One only has to look at the variety of assumptions made by people on this forum. They vary considerably.

 

The fact that many assumptions are made on word of mouth but on little hard evidence does not mean that hard evidence does not exist. In the OP's case, the features of K's behaviour were almost identical to those exhibited by my son. To suggest that they might be caused by sensory problems is indeed an assumption, in the same way that any comment on someone one has never met is an assumption, but then I am very grateful to parents who have made similar assumptions about my son and said ' you could read this' or 'what we did was...'

 

It's also an assumption based on a substantial body of evidence. The evidence suggests that sensory processing is not consistent either between individuals, nor within individuals across time. That's because it's a complex set of processes, therefore lots of factors can contribute to its variation and it's subject to physiological fluctuation, due to changes in diet, sleep, activity level etc. Sensory processing also varies in so-called NT people (although I have yet to come across a watertight definition of what constitutes neurotypicality - as far as I can see, there's a lot of sensory variation across the whole population), so it's not safe to assume that someone without a diagnosis of autism doesn't have sensory issues.

 

How people respond in relation to 'rewards' is also quite complex. It's widely misunderstood. Especially in schools and by government where it is often assumed that behaviour can be shaped by a system of rewards and punishments. The fact that this patently doesn't work is studiously ignored. And that's with 'NT' people, not those with autism. People attach different weightings to rewards and punishments, and their response depends on the circumstances. On top of that the evidence suggests that autistic people do not respond 'typically' to reward and punishment. Since autistic people have been found to have variations in the neurotransmitters involved in the reward circuits of the brain, this is unsurprising.

 

I don't think it's safe to assume that just because a child doesn't want to go on an outing, acts up, and so the family goes home, that the child just doesn't want to go and is persisting in acting up because in the past they have got their own way. I have lost count of the number of times I have read of a parent discovering that their autistic child's reluctance to do something stemmed from the fact that their legs hurt if they walked too far, or they felt dizzy but didn't realise they were hungry, or they found noise or the number of moving people overwhelming - but they haven't been able to articulate their discomfort at the time.

 

In other words, they might be interested in getting their own way solely because they were in considerable discomfort if they didn't. A child with tears streaming from his eyes and saying they hurt, or with his hands clapped over his ears screaming 'my ears, my ears!' might indeed be laying it on thick in order to be allowed to go home and play computer games. On the other hand he might be experiencing 'torture'. I for one, would not want to push him too far out of his comfort zone, because whatever the reason he objects to the outing, doing so is is quite likely to make him even more resistant to outings in the future.

 

cb

Edited July 31, 2010 by coolblue

[MelowMeldrew]

i fully accept you are doing the best you can with a kid who has multiple issues. i am toying with the fact that i might need to go back on tablet risperdal. i have had 2 incidents today where i have attempted to explain aspergers to people who have no knowledge of it. One person asked if medication can control it (but came round to the idea that he innocently makes mistakes and a gentle approach works with him) another told me "hes not autistic" in a "you have no idea what you are talking about". im thinking erm im studying the subject and i am one.

 

i also fully accept that respite care is a joke in some areas and that parents are stretched to the limits. i am on my local NAS group and see parents tearing their hair out trying to get help and support for their distressed kids. No one can know everything about autism even me, or experts.

 

If I am perfectly honest explaining why it happens is becoming more irrelevant, unless it can help us and him manage it. I get frustrated by people telling me "This is what autistics do..." then walk away. No autistic displays the same way, so I am not interested in an academic course on Autism, I want support and info to deal with real issues in real time, that's how they are presented to me. I've got the NAS coming here very soon, it will be the first time anyone connected with my son's condition outside school has turned up, I'll let you know how it goes ! It's clear to me I cannot deal with multiple issues all the time, some are being neglected, (I can only do so much), and some need addressing right now and cannot be shrugged off as "this is what autistics do..." I think we all know what our autistic children do... but I don't ant to write a thesis on it... we want our son to experience some peace...

[mossgrove]

I am coming fairly late to this topic but I would like to add a couple of things as the father of a child who has very similar issues around going out plus three other children (One of the others is on the spectrum but has fewer issues around going out)

 

- An Autistic child may never enjoy some family activities in the way that other children do, and getting angry or frustrated with them is completely understandable but ultimately unproductive.

 

- Sometimes we have to use strategies like Gameboys, books or laptops to allow J to opt out of the parts of the activity he cannot cope with and sometimes one parent has to stay with J and the other parent goes with the others.

 

- We have applied to Social Services for Direct Payments to help with the cost of care for J while we both take the other children out. It is taking ages for this application to work it' way through the system but they haven't turned us down yet!

 

Ultimately there are no easy answers to this. The outside world can be an overwhelming and scary place to an Autistic child in a way that many of us will never fully understand, but we do try and take him out when we can because being able to cope in the wider world is a skill he will need as he gets older so there are times when we do challenge him to do more.

 

Ultimately all you can do is reach your own judgments about where to draw the line.

 

Simon

 

 

[baddad]

'The assumptions surrounding autism are invariably extreme'. This statement is patently untrue and quite unhelpful. One only has to look at the variety of assumptions made by people on this forum. They vary considerably.

 

The fact that many assumptions are made on word of mouth but on little hard evidence does not mean that hard evidence does not exist. In the OP's case, the features of K's behaviour were almost identical to those exhibited by my son. To suggest that they might be caused by sensory problems is indeed an assumption, in the same way that any comment on someone one has never met is an assumption, but then I am very grateful to parents who have made similar assumptions about my son and said ' you could read this' or 'what we did was...'

 

It's also an assumption based on a substantial body of evidence. The evidence suggests that sensory processing is not consistent either between individuals, nor within individuals across time. That's because it's a complex set of processes, therefore lots of factors can contribute to its variation and it's subject to physiological fluctuation, due to changes in diet, sleep, activity level etc. Sensory processing also varies in so-called NT people (although I have yet to come across a watertight definition of what constitutes neurotypicality - as far as I can see, there's a lot of sensory variation across the whole population), so it's not safe to assume that someone without a diagnosis of autism doesn't have sensory issues.

 

How people respond in relation to 'rewards' is also quite complex. It's widely misunderstood. Especially in schools and by government where it is often assumed that behaviour can be shaped by a system of rewards and punishments. The fact that this patently doesn't work is studiously ignored. And that's with 'NT' people, not those with autism. People attach different weightings to rewards and punishments, and their response depends on the circumstances. On top of that the evidence suggests that autistic people do not respond 'typically' to reward and punishment. Since autistic people have been found to have variations in the neurotransmitters involved in the reward circuits of the brain, this is unsurprising.

 

I don't think it's safe to assume that just because a child doesn't want to go on an outing, acts up, and so the family goes home, that the child just doesn't want to go and is persisting in acting up because in the past they have got their own way. I have lost count of the number of times I have read of a parent discovering that their autistic child's reluctance to do something stemmed from the fact that their legs hurt if they walked too far, or they felt dizzy but didn't realise they were hungry, or they found noise or the number of moving people overwhelming - but they haven't been able to articulate their discomfort at the time.

 

In other words, they might be interested in getting their own way solely because they were in considerable discomfort if they didn't. A child with tears streaming from his eyes and saying they hurt, or with his hands clapped over his ears screaming 'my ears, my ears!' might indeed be laying it on thick in order to be allowed to go home and play computer games. On the other hand he might be experiencing 'torture'. I for one, would not want to push him too far out of his comfort zone, because whatever the reason he objects to the outing, doing so is is quite likely to make him even more resistant to outings in the future.

 

cb

 

 

Delete invariably and insert 'often'. Other than that I stand by what I said - often - very often - if an autistic person doesn't like something it is taken to be a hugely powerful emotional turmoil purely on the basis that it is an autistic person doing the disliking. Autistic people don't have hobbies they have 'obsessions'. Autistic people don't have tempers they have 'meltdowns'. Autistic people don't have likes/dislikes they have 'food issues'. Autistic people aren't 'naughty' they're autistic. Autistic people aren't overindulged and underdisciplined they have autism related ADD Or DA.

etc.

etc.

etc.

As for that substantial body of evidence - why of course there is. Because the evidence is anecdotal, and more and more people buy into the anecdotes. The 'self perpeutuating myth' I mentioned in my first post. If a child will only eat sossidges nuggits and yoggits and happens to be autistic then the two are 'linked' because the myth already exists to create the link. If Tony Attwood said tomorrow that some autistic people pick their noses, then every nose picking autistic kid on the planet would be picking their nose 'because they are autistic'... The fact that nose-picking is a fairly universal (I put 'fairly' there, just in case your son has never picked his nose) childhood behaviour becomes irrelevant. Well, apart from the fact that many parents of autistic nose pickers will stop telling them not to do it because of assumptions about the 'torture' not picking their nose might put them through, of course...

 

Simon says autistics do this

Simon says autistics do that

Simon says autistics don't do this

Simon says autistics don't do that

Autistics do this...

 

Hah! Gotcha! Didn't say 'Simon (or Tony) says'...

 

Then when they hit sixteen/seventeen/eighteen and realise for themselves just how damaging and limiting all of this is many will start pushing their own boundaries. They blossom, and that's taken as an indication that M&D got it right rather than as evidence that there were many lost years when boundaries and comfort zones could and should have been pushed but weren't, when assertions by children were accepted as though they were adults - as though they had the capacity and maturity to make such decisions for themselves. Of course, for some autistic adults that doesn't happen. The patterns are far too deeply 'set' for them to break and the roles they play far too deeply ingrained. They will always remain what they decided to be and were allowed to be as very small children, because at 18/19/20 it really can be too scary to consider anything else.

 

Which is not to say that for some autistic people hypersensitivities etc can't be an issue... Just that IMO it is nowhere even close to the kind of numbers that are casually claimed with pretty much no consideration for the more likely alternative that children behave like children because they are children.

 

Sorry, sawjd, for taking a slice of your thread again to justify having an opinion. None of the above is intended as a response to your post - just to the cherry picking 'ohhh... look there's a word I can take exception to' nature of some of the other posts, more of which, I'm sure, will follow...

 

L&P

 

BD

Edited July 31, 2010 by baddad

[mossgrove]

Simon says autistics do this

Simon says autistics do that

Simon says autistics don't do this

Simon says autistics don't do that

Autistics do this...

 

Hah! Gotcha! Didn't say 'Simon (or Tony) says'...

 

I didn't say any of those things!

 

Simon