Do you think its easier

[Lynden]

I've been thinking about this a bit. Logan is fairly low functioning (I assume - I dont know the actual definititions but he's completely non verbal, ltd understanding and has some very obvious textbook autistic traits with additional developmental delay) however, although it can mean hard work for me - he is SO happy - he is completely oblivious to the fact that he is different in any way to anyone else. He is just coming on three though so we know he's young, and things could change a lot.

 

As a contrast, my hubby who we are pretty sure is aspergers, had a tough childhood and struggled a lot because he was different/had few friends and didn't know why.

 

I sometimes think it would be much easier for Logan to stay as he is - completely unaware of being different as it must be so much easier for them.

 

Lynne x

[oracle]

Oh Lynne

 

What a question. My own personal belief is that an ASD is an ASD is and ASD and that no matter what part of the spectrum, that person will have life long needs and will require input from service providers.

 

I hate the low high functioning labels because if a child or adult is none verbal then we really do not have a true indication of how well they function. It is probably easier to give service provision to someone who is none verbal and can not obviously care for themselves. However as you say those who are classified as High Functioning and are fully aware that they have problems and differences can lead pretty darn miserable lives, but are deemed capable of not needed any provision

 

We live in a crazy mixed up world where your IQ is used to determine your needs. I reckon we need a social IQ and then professionals might realise just how much those who are High Functioning have as many complex and specific needs as those who are 'Low Functioning'

 

 

Oracle

[Karen A]

Lynne I don't think there is an easy answer.I to have thought about it a lot.I have a very close friend who has a son who is Dx ASD he is unable to speak and needs a lot of help with daily living.My son Ben has DCD with Aspergers traits he is extremely articulate and intelligent but has significant difficulties emotionaly and with his behaviour.I have spent time attempting to explain to other close friends -who know both children ,that they are both within tha autistic spectrum.How does anyone decide how another experiences life-This is true for anyone I think [gosh sounding a bit deep there ]But even more true when it is difficult to share the experiences of those with ASD.Karen

[jannyk]

when j and i had a visit from a lady from the lea she was trying to poo poo that he even had asd because he was sat still for once and she did get eye contact she kept asking me where abouts on the spectrum he was and i dont know i was saying well i thought asd covers everything she said well he must be low down because he looks fine to me how can people say things like this when they dont know what he is like to live with .

[Viper]

This is a hard one. I can only tell you my experiences with my son who, although he has no DX yet he has AS traites and is classed as gifted.

 

I find that he has a thirst for knowledge and gets bored very easily which leads to frustration and melt downs. Not being able to play on his own means he needs constant stimulation from me, making life very exhausting. He also wants to have friends but dosen't know how to play with them.

 

He still wears a nappy due to fear of the toilet but he knows this is wrong for his age, so he gets very upset about it but can't do anything about it. His perception of right and wrong are very clear cut but he can't understand that if someone hurts him it can be an accident. To him if anyone infilcts pain on him it is a deliberate act and deserves retaliation. An appology means nothing.

 

As for knowing he is different, yes he does know but at the moment he dosen't care. He is only 5, 6 in september so maybe this will change but I try to give him possitive outlooks to his differences, ie, he can read like an 8 year old and play golf extreemly well for his age. the problem with friends will get harder but I hope he can learn to get round it in time.

 

I wouldn't change him for the world, he is who he is and we all love him no matter what his difficulties.

[Guest flutter]

we all love our kids no matter what, and hopefully they will be more accepting of themselves cos of that,

i always say to mine that we are all individulas, but some more individual than others.

i was told tho last night by dd that altho i have read all the books on her i cant help her

[col]

<'> <'> flutter that made me cry.

[jb1964]

Hi Lynden,

 

I think this is so difficult to answer.

 

Obviously each child is different and each child's home life/school life etc is different, no two situations will ever be the same for comparison.

 

I try to think of our life and things that have been difficult etc, for us if perhaps we had know at an earlier age that my daughter had and ASD (she was diagnosed last year at 12) then we could have made changes earlier, I would have been more aware of how to approach her and deal with her anxieties, learned earlier to try and be more specific in my instructions, that I wouldn't have 'forced' certain situations on her - that school would have been slightly more 'bearable' then she may have had slightly less anxieties/worries etc which in turn would have obviously made it slightly better for all our lives.

 

Then I think how we would have all coped if perhaps I didn't have my hubby by my side - if I didn't have my own transport (her school is 6 miles away and she won't go on the school bus), if she had different parents who might not have been so 'lenient' with her behaviour, if my mum didn't look after her during the day when I'm in work, if she'd been bullied physically as well as mentally in school, if 'all' of her teachers were uncaring and unsupportive - then I'd probably be looking at a totally different scenario of all our lives.

 

Take care,

Jb

Edited July 11, 2006 by jb1964

[curra]

Lynden,

 

It's very hard to say which one is easier. My son has a dx of AS and sometimes I think that it's wrong, that he's HFA because apart from being very bright and articulate, he's more withdrawn and detached than most AS kids and needs help with his daily living. And then there are other people, at school and in the family who think that he's just naughty or overprotected. For him life is very difficult because he's intelligent, articulate and deep but in his world nobody understands him and everything seems to be like topsy-turvey. For me it's also very hard because I worry a lot about his future and think that if he's so misunderstood now, how much worse it can be later when he's a man? I don't think that children who are low functioning - non verbal have an easier life though. Temple Grandin is an example of an autistic person who was low functioning during her childhood but had a very rich inner world which she later managed to talk about in her books.

 

Curra

[Bullet]

The trouble with high and low functioning labels is that they can be very confusing. Ds1 has just turned three and in may ways I would have to say he's low functioning. He appears to have limited understanding, he can very stuck in his own world and not be distracted from it, his sensory issues are becoming more apparent and though he's verbal it's mostly all echolalia and nothing he says has been said to anybody. However, he knows most of his alphabet, reads and says numbers 1 - 20 , knows some shapes and I'm pretty sure he's learning his colours. Now I do not believe for a second that lowfunctioning children are not intelligent so his cognitive skills could still put him on the lowfunctioning side of things. However, if we are saying that functioning is how well you interact and cope in society then when Ds1 is joining in with the group singing sessions at toddler group then he would be classed as high functioning maybe because his interaction gets very good then.

Because he is mostly so happy and because I can understand him quite well so far I don't find him difficult to deal with most of the time. All I want is for him to continue to be happy and for people to recognise that just because he has communication differences and perceives the world differently to a lot of people doesn't mean he's not an intelligent and loving lad.

[jen]

This is a difficult question and my main priority is my sons happiness but he does not seem to be happy in any environment.

 

my child is 9 years old with ASD and a lot of sensory problems, he attends mainstream school helped by an LSA who works with him full time. He is very bright in science and maths but struggles with reading. He constantly struggles to cope in mainstream school and at times I think it is not worth it as he is not happy. But I have also taken him on visits when I was considering putting him in a special schools where they say they can cope with his emotional behaviour and ASD and sensory but they say he would be frustated with the level of work he would have. So my son does not appear to fit in with mainstream or special school.

 

He misses out on any after school activities or holiday playschemes, discos etc. Because he does not attend a special school he misses out on all the extra stuff playschemes etc that the special schools run also he has no friends at school.

 

Jen

[bid]

Hi Jen,

 

Have you looked at some of the independent special schools for AS...they cater for all aspects, including the academic side of things.

 

Bid

[jen]

Thanks Bid,

 

yes I am in the process at looking at the Independent Schools than there will be another fight on my hands to sort out funding.

 

Jen

[Lynden]

Thanks everyone. I've just been thinking ahead a little bit I guess. I know that my hubby had a difficult childhood and obviously I want to avoid that for Logan if possible (dont we all). I know at the moment he is a completely happy wee soul and I'd love to preserve that - but I guess thats part and parcel of being a parent - I dont want any less for my NT daughter either!

 

Thanks

Lynne

[LizK]

I only have experience of Adam who is on the higher functioning end of the spectrum so it's difficult to say. High functioning doesn't necessarily mean lesser needs which seems to be a common misconception amonsth people who ought to know better. I would think the experiences of bringing up a child on different end sof the spectrum are very difficult. At Early bird I remember a mum of a non-verbal child with LFA really struggling with her child eating leaves, coal and other various random objects whereas another mum of a child with HFA was struggling to cope with her son's hyperactivity and turned up one time bruised and sratched because of his aggression. Which parent was having the harder time I couldn't say? Which child was having the tougher time I too couldn't say.

 

Interesting question. I think I get times when things get hard and I get quite low about it all, then I get times when life is good and think we got off lightly. Sometimes I just think life is different not necessarily harder. My normal is just a different normal to that which others inhabit! Your question has made me think about things from Adam's perspective because often enough when we talk about things being easier it's from our viewpoint but how it is for Adam I'm not sure. He smiles and laughs a lot which must be a good sign I hope

 

Lx

[baddad]

He who marches out of step hears another drum......

I think it's difficult at either 'end' if the people you're marching alongside are trying to make you march to theirs...

I think the pressures at either end are different, but none the less real to the individual.

It maybe that children who are less socially interested/aware/motivated have a slightly easier time, because they have less expectations placed upon them, but then they are more likely to attract negative 'assumptions' about the quality of their lives, because the models generally used to make comparisions are so patronisingly 'NT'.

On the other hand, assumptions made about the 'HF' individuals quality of life fail to recognise the huge pressures and sacrifices they have to make to accommodate themselves in 'our' world, or to address the major psychological implications of those pretenses.

 

L&P

 

BD

[Lucas]

My personal view and one which I believe to be the only one supported by science is that the supposed functioning of the person does not affect the difficulty for them or those around them, but the accomidation and suitability of the enviroment to support their needs does.

 

Under the social disability model, anyone can be made disabled and low functioning in an enviroment that brings them to that point. It's why Bettelhiem's tin-pot ideas were accepted at the time; he had discovered a group of people(in Nazi camps) who were brought to that point and compared them with Autistic groups.

[Bullet]

I can see that with Ds1. The more open and noisy the environment the less Ds1 wants to interact or listen to things. In a quiet room, especially with few people around, he's likely to be more willing to join in with things, though he still gets caught up in doing what he wants so it's often a struggle to get him to notice things even then. And I find with myself that if I'm in a crowded place I find it very difficult to talk or feel calm and end up walking round snapping at DH if he so much as asks me a question