In Need Of Urgent Help pls!!!

[Anonymous]

#3953

Note: SFTAH transferred this from old data base when site was updated, thus date and name lost, all dates 2006 & 2007 changed during changeover to odd dates.Hi everyone my name is illy, and i am new here, I have 3 children, one diagnosed with ADHD, and a 6 year old who i believe has Asperger Syndrome, however we had appointment the other week at CAFS in Kettering, and they say no! But also that if his behaviour continues at home and school in the next 3 -4 years they will see him again!! That is no good to me, i know he is defo AS, he lines everything up, his senses are very sensitive, he doesnt understand simple instructions, he cant play with others, he swears, is aggressive, to everyone, he has no concept of dangers, he only plays with a few select things, animals, soldiers, and thunderbirds, and that is just lining them up!!His coordination is very poor, as are his gross and fine motor skills, he still wears nappies,So what would you say?I really dont know what to do, i am so confused, angry and upset1I also have a 2 year old daughter who seems ok, just very independant and very forward.Thankyou for letting me join, and hope to hear from you soonOne very confused, angry mother of 3illyThere is always tomorrow!

[Anonymous]

#5115

Hi there i realy would like some advice on this please, i know everyone is busy,

Thankyou illy

There is always tomorrow!

[Anonymous]

#5117

Hi Illy, I’m parent support here at Autism Independent UK. I’m not in the office this morning but should be there tomorrow from 09:30. Please give me a call and I will see if I can help 01536 523274. Hope to speak to you tomorrow. Carol.

[Anonymous]

#5110

Hi illy in the same situration as you my son has severe autism still in nappie’s getting no where with toileting as i’m the only one bothered to sit him on there.He will also be fine one minute then have bout’s of paddy’s for up to an hr or more put it down to frustration.Building up as he has no speech also slap’s his head and his ear’s quite hard as well do you have a prob cutttng your children’s nail’s.we are off camping this sat to weymouth which will be fun dose it get any easyier keep in touch!!!!![:)]

l blick

[Anonymous]

#5120

Hi Louabel,

I work for the Autism Family Support Team in Northamptonshire – not sure where you come from.

We work with families and children with ASD who experience many of the concerns you have.

We help to address these issues and try to change or modify behaviours with the use of visual and physical structure using the TEACCH approach.

People with ASD are generally concidered to be poor verbal learners and good visual learners and therefore TEACCH works very well and can be extremely effective as it works using the positive features and strengths of ASD – trust me it might not seem so now but there are positives.

It is difficult to offer suggestions on all the areas you are struggling with at once but if you could like some advice on any one of them please let me know.

Can I suggest that you keep a diary type record of you child’s behaviour if you are having problems getting professionals to ‘hear’ you. It only needs to be short notes. Many of our families have found this useful so that they have the information and evidence at hand when asked about their child. t is often quite daunting when you are in a room with a load of professionals and they are almost asking you to ‘prove’ your child has ASD. Having the information at hand listing the behaviours and, importantly the frequency of these behaviours, has made many of our parents feel empowered.

Good luck
Jayne

[Anonymous]

#5113

Hi Jayne, i am in the northants area, Kettering, my son has just been through a diagnostic criteria, well me really answering loads of questions and they have turned round and said he doesnt have ASD or Asperger!!! i am very confused,
From my earlier message you can see what i have to put with .
Yesterday i was called Bitch many many times, and i have been writing things down, but with two other childrne too, 2 yr old and a 12 yr old with ADHD, there is alot to do,
I just need someone to talk to and for them to tell me where to go next.

Thanks illy

There is always tomorrow!

[Anonymous]

#5122

Hi illy,

I know you are busy with your 3 but if you can try to get hold of Carol at Autism Independent Uk and speak to her as she knows so much about how to get through the maze of dealing with professionals and I’m sure can guide you in the right direction.

It might also be worth giving the Northamptonshire Society for Autism a ring as they have a support and advice line.

The Team I work for can help management of many of the issues you are experiencing but we can only do so when you are referred on to us.

I’ve got your e-mail so I’ll contact you there.

Jayne

[Anonymous]

#5111

HI Jayne, was wondering how i get reffered to you, as i really am at a loss as to what to do, where to go, and hope to cope most of the time
As i have a 12 year old boy with ADHD, and possible ODD too, things have really took there toll on me
Thankyou for taking the time to reply

Thanks Elain

There is always tomorrow!

[Anonymous]

#5119

Hi Illy,

in order for the Autism Family Support team to work with you and your family we would need a referral from one of the Disabled Children’s Teams.

If you do not have a Social Worker from one of those teams you can apply for one.

A professional who knows your child can complete an inter-agency referral form and send it on to one of 4 Referral Teams based throughout the county.

They will look at it and see if you meet the criteria for the Disabled Children’s Teams and if they think you do they may pass it on to them.

Hope this makes sense.

Jayne

[Anonymous]

#5109

Hey Lily,

This may sound like a bloody stupid question, but have you asked your son why he uses abusive and violent behaviour, at all? Not in an aggressive way, you understand, but in the tone of voice you might use to ask why he’d chosen a blue shirt to wear.

I refuse to use physical force of any kind on my kids, simply because I used to have the **** beaten out of me as a kid, and my son, at around the age of 4/5 used to throw some quite horrific paddies! I reckon I can use my intellect to much better efect. A bit more difficult with a 12 year old, I appreciate, but I would let mine punch himself out and then ask him why he was hitting me. It had quite a disarming affect. Maybe try it with the abusive language to start with?

This may sound like naive advice, I accept, but I’ve yet to meet anyone who wasn’t “normal”, by my estimation. Sometimes it’s just necessary to throw things at them (figuratively) that they aren’t expecting – get them to think another way, you know?

Best regards

Radagast

quote:

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Originally posted by illy
HI Jayne, was wondering how i get reffered to you, as i really am at a loss as to what to do, where to go, and hope to cope most of the time
As i have a 12 year old boy with ADHD, and possible ODD too, things have really took there toll on me
Thankyou for taking the time to reply

Thanks Elain

There is always tomorrow!

---

[Anonymous]

#5121

Hi Radagast,

I appreciate what you are saying and this may be really good advice for a non-autistic person but it may be difficult for the parent of a child with ASD to ask him why he behaves in a certain way.

For children with ASD the world is generally very black and white – with little or often no grey areas. They ‘live the moment’ and may instinctively react without knowing or understanding why.

It would be almost impossible to discuss the behaviour while the child is still distressed or anxious as their ability generally plummets as their anxiety increases and they simply not able to process the question and find the right words for an answer even if they know the reason.

If you wait until the child has calmed down they may have ‘moved on’ and the behaviour and the cause of it are forgotten. To try to discuss an incident at a later date may cause the person with ASD anxiety and distress because they may not know what you are talking about or may be unable to process the question and find an answer.

The way we would try to modify this type of behavour would be to introduce elements of TEACCH – physical and visual structure – giving the young person clarity about what will be happening and what is expected of them and offering an alternative way to behave. With this information the young person’s anxiety level will be lowered and therefore there will generally be less inappropriate behaviour.

Depending on the ability of the child we may also use Social Stories to teach appropriate social behaviour.

I think the trouble with ‘ throwing things at them that they aren’t expecting’ would be that children with ASD thrive and need predictability and sameness and a different approach that they are unprepared for may only increase their anxiety.

It’s really difficult thinking about how to manage the bahaviour of children with autism – you almost have to turn everything you know about parenting on its head!

Jayne

[Anonymous]

#5107

Howzit,

Obviously I’m inexperienced when it comes to autistic people, which is why I’m on these boards: to learn. Everybody lives in the moment, as you put it. And I find that most people have a great deal of difficulty explaining why they behave in a certain way, particularly with respect to things that they absolutely believe to be true. Imagine asking why a politician behaves in the way (s)he does, for example: (s)he wouldn’t even understand the question. But (s)he would have to think about it. Everybody’s beliefs are a fiction, based upon their own interpretation of the world. That much is clear to me. Given the success of the experts in providing an alternative, I don’t see the harm in treading on their toes, occasionally.

As to when the behaviour was discussed: I did write that I waited until my son had finished his attack, before asking, but while it was still fresh in his mind. Please understand that he never gave me a “good” answer, and I never really expected one, but he realized eventually that he could resolve issues with discourse, rather than violence. And that understanding was more valuable to me and to him than any excuse he may have come up with at the time. The timing is everything, I agree, and one has to be very careful about triggering behaviour, in the way you suggest, which is why a simple question, left hanging, as I suggested, is completely different from an interrogation, which is clearly inappropriate. And it’s completely benign.

I agree that introducing alternative behaviour is absolutely the way to go, but I think you underestimate the power of speech to introduce alternative understandings of what may be required. I think there may be a problem with presenting appropriate social behaviours, which, while ideal, are almost universally ignored by society at large, possibly even by the parent/carer, if they were but able to see their own behaviour. I know that my wife still won’t accept that I’m copying her.

As to parenting: I’m guided by my kids, which tends to really piss other people off. I explain things to my kids until they’ve had enough information. I look at others telling their kids that they must do things that they don’t wish to do, simply because the parent is in a position of power and able to introduce force to achieve obedience. In short, I’ve already turned parenting on its head, as far as I can see!

I understand that you have greater experience in the field of autism than I. However, please note, per my message to John, that I have been copying people for nearly forty years, and I have a bunch of generic understandings as to why people do what they do. Whether I can apply what I already know to autistic behaviour remains to be seen, but I don’t see any harm in trying.

Best regards

Radagast

quote:

---

Originally posted by Jayne
Hi Radagast,

I appreciate what you are saying and this may be really good advice for a non-autistic person but it may be difficult for the parent of a child with ASD to ask him why he behaves in a certain way.

For children with ASD the world is generally very black and white - with little or often no grey areas. They 'live the moment' and may instinctively react without knowing or understanding why.

It would be almost impossible to discuss the behaviour while the child is still distressed or anxious as their ability generally plummets as their anxiety increases and they simply not able to process the question and find the right words for an answer even if they know the reason.

If you wait until the child has calmed down they may have 'moved on' and the behaviour and the cause of it are forgotten. To try to discuss an incident at a later date may cause the person with ASD anxiety and distress because they may not know what you are talking about or may be unable to process the question and find an answer.

The way we would try to modify this type of behavour would be to introduce elements of TEACCH - physical and visual structure - giving the young person clarity about what will be happening and what is expected of them and offering an alternative way to behave. With this information the young person's anxiety level will be lowered and therefore there will generally be less inappropriate behaviour.

Depending on the ability of the child we may also use Social Stories to teach appropriate social behaviour.

I think the trouble with ' throwing things at them that they aren't expecting' would be that children with ASD thrive and need predictability and sameness and a different approach that they are unprepared for may only increase their anxiety.

It's really difficult thinking about how to manage the bahaviour of children with autism - you almost have to turn everything you know about parenting on its head!

Jayne

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[Anonymous]

#5108

So, children learn by copying (as do adults, if they would but accept it). How do we know that autistic people are not merely highly sensitive, highly functioning individuals, who are learning about their world through mimicry? How do we know that apparently extreme behaviour is simply an autistic’s interpretation of the way the world looks to them? Does the world look that violent to them? Hard to admit, but I’m willing to wager that’s exactly what’s happening: the world certainly looks like a violent place to me.

How do we know these things, especially if we don’t ask them? How can we be sure that it’s not the rest of us that lack communication and social skills, and autistics are just copying us? Is it easier to believe that they are “less” than us, in some sense? Of course it is. Is it possible that these people are extraordinary in every sense, but that we can’t see it? Of course it is. Remember, if they look weird, they’re only copying us. That’s what children do. To require them to do as we say, not as we do, thinking we can act with impunity leads to appalling confusion: it goes against the very basis of learning. One would be denying them the right to learn about YOUR world, because you won’t allow them to copy it, and you won’t explain it, either. And it’s your world that they are trying to fix.

Simple questions, but sometimes you have to throw things in that people aren’t expecting! Such is my understanding of behaviour: everything is learnt. Incidentally, the above probably represents the most acceptable of my theories! Alternatively, one may follow the accepted scientific position: autism is incurable and your child will be living with you for as long as you live.

Best regards

Radagast

quote:

---

Originally posted by Jayne
Hi Radagast,

I appreciate what you are saying and this may be really good advice for a non-autistic person but it may be difficult for the parent of a child with ASD to ask him why he behaves in a certain way.

For children with ASD the world is generally very black and white - with little or often no grey areas. They 'live the moment' and may instinctively react without knowing or understanding why.

It would be almost impossible to discuss the behaviour while the child is still distressed or anxious as their ability generally plummets as their anxiety increases and they simply not able to process the question and find the right words for an answer even if they know the reason.

If you wait until the child has calmed down they may have 'moved on' and the behaviour and the cause of it are forgotten. To try to discuss an incident at a later date may cause the person with ASD anxiety and distress because they may not know what you are talking about or may be unable to process the question and find an answer.

The way we would try to modify this type of behavour would be to introduce elements of TEACCH - physical and visual structure - giving the young person clarity about what will be happening and what is expected of them and offering an alternative way to behave. With this information the young person's anxiety level will be lowered and therefore there will generally be less inappropriate behaviour.

Depending on the ability of the child we may also use Social Stories to teach appropriate social behaviour.

I think the trouble with ' throwing things at them that they aren't expecting' would be that children with ASD thrive and need predictability and sameness and a different approach that they are unprepared for may only increase their anxiety.

It's really difficult thinking about how to manage the bahaviour of children with autism - you almost have to turn everything you know about parenting on its head!

Jayne

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[Anonymous]

#5114

Hi well i never raise my voice when trying to help my son with anything
Neither me or my husband hit, smack, and nether of us swear in any way!
It is hard to comminicate with ,my son, allthough he has speech, but if he has a way of doing it and i try to explain or show him some easier way, he will blow up at me.
And like Jayne said it is black or white to these children.
He takes everything very literlly, and when he has his things lined up, then no one is allowed anywhere near!
My husband is very laid back, i think int he years we have been together, 13 – 14, he has only shouted twice, and one of them was a totally different situation, that even a Preist would have got angry, and at that time we didnt have Anthony.

His older brother is usually in his room, so he doesnt see much of him,
My daughter who is 2 is full of cuddles and love and kisses and we always respond to this with the same back,
So i cant see where he has learnt this from!

When my son is angry trying to tackle it makes the situation worse, he goes into a complete meltdown, and this can last for hours,
I have had to go out, to get away from it as it is also very sad to see.
I hope this shows that we are loving caring parents, and that he must have something to behave in the way he does
Thankyou

There is always tomorrow!

[Anonymous]

#5123

Hi
Illy, I think you highlight very well the fact your child does certainly NOT behave aggressively due to learnt behaviour from home.

In almost every time the Team I work for are asked to help a family change aggressive or ‘violent’ behaviour it has been due to distress, uncertainty or anxiety in the child and not due to what the child has seen and is copying. I does give me cause for concern that this suggestion has been so forcefully made a number of times.

Parents find it difficult enough living with a child with ASD without it being implied that their child’s behaviour may, in some way, be their fault.

This arguement also falls down in the fact that children with ASD rarely transfer a behaviour learned in one envirnoment to another – as they are often unable to generalise.

I feel i must comment on a previous statement made by Radagast about ‘appropriate social behaviours….. being almost universally ignored by society at large, possibly even by the parent/carer.’

We must be talking at different levels. The children i generally work with need guidance on the most basic of appropriate social behaviours e.g. not stripping off in Tescos, how to wait in a queue, going to the bathroom to use the toilet, how to approrpriately gain someone’s attention. These are the type of social rules that we all live by and are generally not ignored by society.

If, indeed these rules are ignored by parents / carers why is it these very people that ask for our help?

The skills learnt, not only benefit the family allowing them to access sections of the community they, otherwise, do not feel able to do. But, perhaps more importantly, without these skills children with ASD are left very vulnerable out in the community. Like it or not society has expectations that people will conform to a certain extent – this does not mean that people with ASD can’t be ‘themselves’.

Finally i don’t know anyone who lives with or works in the field of ASD that feels that the children we know are ‘less than us’. We generally do think they are ‘extraordinary’, loving and clever, but in reality they can also be also draining, frustrating and really difficult to care for. This does not mean they are loved any less.

Yes general opinion is that ASD is a life long disability but that DOES NOT mean that children with ASD will not change, mature and develop with knowledgable help and support. Nor does it mean that they will always ‘be living with you as long as you live’.

Sorry about the long rant. Felt it needed saying!

[Anonymous]

#5106

Thanks Jayne. I was going to respond with b*****ks but I’m glad somebody knowledgable, with a more succinct and polite command of the english language got in first.

[Anonymous]

#5112

Hi i am a little confused, doesnt take me much, but have i put something wrong in my post?? please let me know,

WE are finding it difficult as cafs wont give a diagnosis at all for our son,
Our son is 6, he doesnt know how to behave in an appropriate way when shopping, coming home from school, at home, how to get ready in the morning, etc etc, the list goes on!

Trying to ask my son why he swears, or lashes out, would certianly get me know where, i may as well ask the cat outside!
He doesnt see anything wrong as far as i can see.

He is more than two years behind at school and now has a statement, for the whole of the curriculum, even toileting. He will be starting Physio sessions after half term for 6 weeks, he has Occupational sessions, and we help him where we can at home.

We as far as we can see have done everything in our power to help him.

We also have a daughter, now not wishing to sound like i am comparing, but she isnt quite 2 1/2 , she is fully toilet trained, Which our son isnt yet. She can count quite easily to 20, she makes her toast (With supervision ofcourse), gets herself dressed, undressed, makes choices etc etc,
Anthony wouldnt know how to make a desicion, if i put out two sets of clothes he would probably put both on!

Anyway to get back to the point lol, i am a little confused about the last two posts, so please explain, i am in the wrong!

Thanks illy

There is always tomorrow!

[Anonymous]

#5105

Hi Illy, Sorry if I’ve caused confusion but I was concerned at the implication that autism was ’caused’ by the parents. Parents of autistic children are under enough pressure without the added, false assumption, that it is somehow of their own doing.

[Anonymous]

#5118

Hi Illy,

also sorry if you misunderstood my previous posting. My ‘ranting’ certainly wasn’t aimed at anything you had said. In fact I agreed with it all.

I was responding mainly to a posting made by Radagast and like DeeDoubleYoo was concerned that ‘blame’ for the behaviour of children with ASD was being levelled at parents and wanted to stress that children with ASD behave the way they do because of the deficits and limitations of the disability and NOT because of their parents actions.

Hope that’s a bit clearer.

Jayne

[Anonymous]

#5116

Oh good lol

It sometimes takes me a while to take things in when i read them!! lol, not sure why

I am going to see someone this morning about my complaint i made about a phone conversatrion i had, where i found the professional extreamly rude!

Hope it goes ok for me

Thanks again Jayne

Elain (illy)

There is always tomorrow!

[Anonymous]

#5124

I have autism four of my children also.There are many conditions that mimic autism such hasFragile X SyndromePrader-Willi SyndromeLandau-Klefner SyndromeSemantic-Pragmatic DisorderOppositional Defiant DisorderAvoidant Personality DisorderSensory Processing Disorderand many morehttp://autismandaspergersinthefamily.freeforums.org/co-morbid-and-related-disorders-f7.html

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