Jump to content
mumble_rocks

Overcoming Autism

Recommended Posts

Pearl - just to say, you, Bid and anyone else have not offended me - it's just been a difficult day all round. The only person who has offended me is the man on the TV.

 

I'll just agree to differ with you on the making money thing - I think they are preying on desperate parents.

Share this post


Link to post
Share on other sites
Pearl - just to say, you, Bid and anyone else have not offended me - it's just been a difficult day all round. The only person who has offended me is the man on the TV.

 

I'll just agree to differ with you on the making money thing - I think they are preying on desperate parents.

me too.

Share this post


Link to post
Share on other sites

I'm also going to give my viewpoint on this as when O was diagnosed I looked very carefully into doing a son rise program with him. I also looked at every other method available in lots of detail e.g. home based intensive ABA programs, Hanen, pecs etc etc. He was 2 and a half when diagnosed as severely autistic with SLD etc etc. and yes I did want to cure him and yes I'm sorry if this offends anyone but I still would remove his autism if I could but I always feel that I shouldn't admit that. I also don't expect to be judged for it because unless you deal with sleepless nights, violent tantrums, incontinence and cleaning up poo several times a day, watch your other child/relatives being attacked if you cant get there quickly enough - KNOWING FOR A FACT that when you die your child will need 24 hour care and you won't be there to check he's ok and not being abused - dealing with repetitive language and severe learning difficulties - well I'm sorry but who would celebrate autism in those circumstances?? I love O with absolutely all my heart but I wish he hadn't been born with autism. People who try to sell a 'cure' are sick and greedy. They are trying to exploit parents who are at their lowest ebb.

Elun xx

Share this post


Link to post
Share on other sites

Completely agree with Mumble. I do say that communication is part of it, because that has a significant impact on both mine and Ds1's lives, but there IS a lot more. He is a sensory seeker/hyposensitive for the most part, I am a sensory avoider/hypersensitive. It also affects how we think, how we remember things, how we learn, how we view the world, how we interact with others, so many things that don't need curing. It affects how we walk, how we talk, how we move. There are negatives yes, but there are positives, many of them and I'm happy as I am and as long as Tom can learn to tell us things I will be happy for him to be as he is.

Share this post


Link to post
Share on other sites

Ok, I have googled and have found this about him:

 

"At the age of 18 months, Raun Kaufman received what he now considers a death sentence: He was diagnosed as autistic and retarded, with an IQ below 30. Experts told his parents he would never speak, never read, never communicate in a meaningful way."

 

Sorry, let me get this straight. He was given an IQ test at 18 months?! How on earth can you measure a toddler's IQ accurately? How on earth can you say that an 18 month old will definitely never communicate or read or speak? At that age there is such a wide variety between children. At 18 months Tom wasn't babbling. Now he can label objects, name colours numbers and shapes, sing songs and repeat back things he's heard. We use speech, pictures and sign language to help him understand and tell us things and we are getting more and more two word sentences when he signs to us (eg "train broken") and "man painting").

Edited by Bullet

Share this post


Link to post
Share on other sites

Elun, I can only speak for myself but when I talk about not wanting to cure autism or aspergers that doesn't mean I mean "do nothing to help". It is perfectly understandable that you'd want to know your child was going to be alright, but it is possible to be alright and be on the spectrum. Understanding and a good environment can go a long way and for those things that your son would still have difficulties with that made his life difficult for him (I'm not talking about him just appearing different, I'm talking about things that he genuinely would need help with) then it's understandable you would want him to have help with those things.

Share this post


Link to post
Share on other sites

Where did I say you or anyone else does 'nothing to help?' The fact you can type on here means that you are not at the same level of functioning as my son. For some people their level of functioning does mean they will never be 'alright'. Are you still dealing with incontinence etc then? All the things I mentione? If not then you don't live my life so how can you comment on it? And for the record we do loads with our son - PECS, Hanen, webster stratton, physio every day and also carry out his s and l program daily. Yes he makes improvements but I would cure his autism if i could

Share this post


Link to post
Share on other sites
Where did I say you or anyone else does 'nothing to help?' The fact you can type on here means that you are not at the same level of functioning as my son. For some people their level of functioning does mean they will never be 'alright'. Are you still dealing with incontinence etc then? All the things I mentione? If not then you don't live my life so how can you comment on it? And for the record we do loads with our son - PECS, Hanen, webster stratton, physio every day and also carry out his s and l program daily. Yes he makes improvements but I would cure his autism if i could

hi elun i can really see where you are coming from. my son is at the severe end. i remember once going upstairs to check on him and he was lying in his own vomit, broke my heart cos he didn't know/couldn't call for help. he still doesn't ask for help, or shout if he needs me. very little speech, still have to bath him, brush his teeth, wipe his bottom (out of nappies 2 years now) and loads of little things that even 3 year olds do without thinking. we do loads with our son too, don't think anyone is saying that we don't (except the eejit on tv yesterday) it's just that my son i know will never be much more competant than he is now. yes he will continue to take baby steps, but he won't be independant in any way shape or form. he is 13 now.

i also have the same worries about me dying and him being left alone, and maybe at risk, with the person he relies on most and understands him and loves him the most being gone. i accept my son, of course i do and i love him whole heartedly, but if i could make him a bit more wordly than i would. i don't know about curing, as i don't know who he would be. to me thats my boy, but for his own protection i would want him "better"(than he is atm). i know he is happy, and i am happy that he is happy, but it's so complex an issue and hard to put in words for me. hope some of that made sense.

Share this post


Link to post
Share on other sites

>:D<<'> >:D<<'> Thanks Pets

Yes it makes total absolute sense to me. It really does. I love my son absolutely as well and his autism is so much a part of him that like you say I don't know what he would be without it. He too doesn't know how to ask for help, I mean it doesn't even occur to him to ask, if that makes sense. My eldest ds (8) is about to undergo assessments - I think he is aspergers or HFA - and the difference between him and my youngest who is severe is that although he struggles he has language - he can actually understand what I'm saying and we can work on things together. There would be a point to things like social stories - I'm not underestimating the difficulties that all people on the spectrum face but to me my 2 boys are worlds apart and they always will be. I get really upset when 'cures' are mentioned as if there was a cure for autism then people who are providing care for their severely disabled children would have found it. There are interventions that help but for us it is tiny tiny steps forward often followed by frightening regressions. With support higher functioning people on the spectrum can (not saying they always do, or that it is easy) go on to live independently. It must be wonderful to have that hope even if it's a tiny light at the end of a tunnel. But it is not a possibility for all people with autism.

Anyway, I'm rambling!

Take care Elun xx

Share this post


Link to post
Share on other sites
when I talk about not wanting to cure autism or aspergers that doesn't mean I mean "do nothing to help".

I think Bullet has hit upon the key issue here. Supporting/treating/curing/helping (whatever word you want to use) any difficulty isn't necessarily a dicotomous decision; it is not a cause of complete 'cure' (i.e. removal of anything not 'normal') or no support of any kind. However such emotive discussions as this do have a tendency to run along such lines with people being attacked for what they feel is doing the best for their child.

 

Autism is, as we all know, a spectrum condition, not necessary meaning running from severe to mild, which has all sorts of issues attached as many threads on here have shown, but whereby each individual is as unique as NT individuals are unique. We all have different difficulties and barriers to overcome some which seem to require simple adjustments, some which appear to be insurmountable difficulties. But context is crucial: what may be a 'small' difficulty or no difficulty in one context may present major challenges in another. We have to consider each case, and each aspect of each case, individually - it's not about one being right and one being wrong - it's more to do with the very unique lives that everyone lives as unique individuals. I have always maintained that my AS is not 'mild' as many like to label AS, because in most contexts I'm expected to function 'normally' in an NT world and then the difficulties and obstacles that I have to find ways around each day are far from mild (but again context dependent - sitting at home now on my own with the computer I'm fine - in an hour and a half when I have to negotiate London buses, walking through the main shopping streets of london and the social interactions at uni and all the sensory imputs associated with each of these and there are obvious 'differences'). Compare me to me brother and yes I am 'mild' if mild is the opposite to severe in that he has more differences from an NT, but our lives and expectations are not comparable.

 

I think perhaps one of the most emotive issues within this is the idea that to cure is to take away autism. I read recently that Asperger's Syndrome is autism in its pure form without accompanying learning difficulties: I've been pondering this a while now and I actually think it fits well here. When people talk about cure, many of he things they refer to as wanting to remove, as elun discusses, are not the autism per se, but aspects associated with it and with the learning difficulties that come with autism. Removing these is about making the person's life more comfortable not about removing autism. I am autistic in the way that others are NT - it's a way of being, a brain type. I have issues associated with this that I need support with. But support isn't about taking away autism - there is no NT hiding under my AS waiting for the autism to somehow be removed and for the NT to dominate and somehow make me normal. To cure autism in the way that many of these programmes emotively say they do in preying on desperate parents; in the ways suggested on the programme yesterday, and the way he was talking about 'having no autism left inside him, is, I believe akin to having a heart transplant without having another heart put back in its place. You can't take away autism in the same way that you can't take away NTishness. But you can support each others weaknesses and celebrate each others strengths and you can find ways round issues that make people's lives uncomfortable.

Share this post


Link to post
Share on other sites

"Where did I say you or anyone else does 'nothing to help?' The fact you can type on here means that you are not at the same level of functioning as my son. For some people their level of functioning does mean they will never be 'alright'. Are you still dealing with incontinence etc then? All the things I mentione? If not then you don't live my life so how can you comment on it? And for the record we do loads with our son - PECS, Hanen, webster stratton, physio every day and also carry out his s and l program daily. Yes he makes improvements but I would cure his autism if i could"

 

I am sorry I upset you. Trying to improve your son's functioning level is perfectly understandable. I have never claimed to be like your son, or another person who would be classed overall as low functioning, but that doesn't mean I don't want to help them, or I believe that they have exactly the same problems as me. I have lived with some degree of incontinence, brought on by a combination of failure to recognise the signs and failure to tell anybody. My last public accident was when I was 15, in church and it didn't even occur to me to tell anyone or try and clean myself up. I was going to walk up to the altar with a wet dress until my dad spotted me and stopped me. Now, this can compare in no way to the incontinence your son has, but it did affect me.

I can't ask for help either (see toileting incidents above for example). I'm not talking about a little social anxiety, I'm talking about the family dog banging into my head and me being in pain for two weeks and not able to tell someone or ask for painkillers. I'm talking about not being able to tell someone I'm hungry or thirsty when we're out and various factors are meaning I can't get the thing myself. I am very fortunate and very grateful to be able to talk and to be able to type, but speech does not come easily to me. I possibly had selective mutism as a young child, I rarely initiate, rarely express or ask for things I want. Most things I talk about are about events or about my interests. There is a huge difference between this and someone being completely non verbal, but it has had a big impact on my life.

I self injure, I stim(handflapping amongst them). I am frequently unaware of obvious things going on round me (earlier this year I failed to hear or see a loud argument a few yards away). My problems are in no way as severe as your son's, but they do exist for me.

I do not want to say "oh, accept your son as he is and do nothing to help." That is wrong. My son is only small (four) so we can't tell where on the spectrum he is, but he needs a lot of help, he would not be classed as high functioning for his age.

If I could take away the negatives of my being on the spectrum and take my son's away and leave the positives I would do so like a shot.

I never believed that you weren't helping your child and I'm sorry that I gave you that impression. I'm sorry that my remarks came across as insensitive, when I didn't mean them to be.

Edited by Bullet

Share this post


Link to post
Share on other sites
I think Bullet has hit upon the key issue here. Supporting/treating/curing/helping (whatever word you want to use) any difficulty isn't necessarily a dicotomous decision; it is not a cause of complete 'cure' (i.e. removal of anything not 'normal') or no support of any kind. However such emotive discussions as this do have a tendency to run along such lines with people being attacked for what they feel is doing the best for their child.

 

Autism is, as we all know, a spectrum condition, not necessary meaning running from severe to mild, which has all sorts of issues attached as many threads on here have shown, but whereby each individual is as unique as NT individuals are unique. We all have different difficulties and barriers to overcome some which seem to require simple adjustments, some which appear to be insurmountable difficulties. But context is crucial: what may be a 'small' difficulty or no difficulty in one context may present major challenges in another. We have to consider each case, and each aspect of each case, individually - it's not about one being right and one being wrong - it's more to do with the very unique lives that everyone lives as unique individuals. I have always maintained that my AS is not 'mild' as many like to label AS, because in most contexts I'm expected to function 'normally' in an NT world and then the difficulties and obstacles that I have to find ways around each day are far from mild (but again context dependent - sitting at home now on my own with the computer I'm fine - in an hour and a half when I have to negotiate London buses, walking through the main shopping streets of london and the social interactions at uni and all the sensory imputs associated with each of these and there are obvious 'differences'). Compare me to me brother and yes I am 'mild' if mild is the opposite to severe in that he has more differences from an NT, but our lives and expectations are not comparable.

 

Brilliant post Mumble

 

I think perhaps one of the most emotive issues within this is the idea that to cure is to take away autism. I read recently that Asperger's Syndrome is autism in its pure form without accompanying learning difficulties: I've been pondering this a while now and I actually think it fits well here. When people talk about cure, many of he things they refer to as wanting to remove, as elun discusses, are not the autism per se, but aspects associated with it and with the learning difficulties that come with autism. Removing these is about making the person's life more comfortable not about removing autism. I am autistic in the way that others are NT - it's a way of being, a brain type. I have issues associated with this that I need support with. But support isn't about taking away autism - there is no NT hiding under my AS waiting for the autism to somehow be removed and for the NT to dominate and somehow make me normal. To cure autism in the way that many of these programmes emotively say they do in preying on desperate parents; in the ways suggested on the programme yesterday, and the way he was talking about 'having no autism left inside him, is, I believe akin to having a heart transplant without having another heart put back in its place. You can't take away autism in the same way that you can't take away NTishness. But you can support each others weaknesses and celebrate each others strengths and you can find ways round issues that make people's lives uncomfortable.

Edited by pearl

Share this post


Link to post
Share on other sites

Gaah! I did something wrong! I meant to put, Brilliant post Mumble, & it all got mixed up with yours, sorry!

Edited by pearl

Share this post


Link to post
Share on other sites
Where did I say you or anyone else does 'nothing to help?' The fact you can type on here means that you are not at the same level of functioning as my son. For some people their level of functioning does mean they will never be 'alright'. Are you still dealing with incontinence etc then? All the things I mentione? If not then you don't live my life so how can you comment on it? And for the record we do loads with our son - PECS, Hanen, webster stratton, physio every day and also carry out his s and l program daily. Yes he makes improvements but I would cure his autism if i could

 

Elun - my daughter is no where near the functioning level that you have with your son. Yet if I could take away her sadness & depression, her frustration and anger, her loneliness and lack of self worth then I would - by doing that no doubt it would change the person inside - I love my daughter inside out - I would die for her right this second - but that doesn't make her happy - her anxieties cause her the level of grief and sadness that would normally accompany a catastrophe, she is so petrified during and after she's lost control, her frustrations cause her to self harm, she goes into such deep sadness after physically hurting me or her sister and she doesn't want anyone to ever find out that she has ASD.

 

All this may change in the future or it may not - the only thing I know for sure is at the moment she doesn't like who she is - I also appreciate that there may be many tens of thousands of NT teenagers who could say that - I can remember my own teen-years and they were not happy but in a totally different league to my daughters issues.

 

There are no magic words that I can say to make things better, a cuddle and a treat doesn't take the hurt away - I cannot say 'never mind - things will work out ok' when she cries herself to sleep because she's lonely - I cannot say 'just think this time tomorrow it will be over with' when she is worried beyond belief over a trip to the dentist. I cannot say 'I'll always be here to help you' - because I won't - it is heartbreaking to be so useless.

 

Personally I don't believe there is a 'cure' - I believe there are things like you say that we can all do to 'help' - but then again they call it a 'spectrum' - each one an individual with different levels of difficulties. I do also wonder very often regarding the 'cured' whether they have initially been diagnosed incorrectly in the first place.

 

Take care,

Jb

Share this post


Link to post
Share on other sites

I just wanted to say that I really value the contributions made to this thread as for me it covers so many of the fundamental issues that I still battle with in my head. I know that it is a highly emotive subject, but (without meaning to sound patronising) I admire how well you are all expressing your opinions. Much of what is being said here runs very close to my heart, and says things that I haven't felt able to admit to, for fear of putting something clumsily and causing offense.

Share this post


Link to post
Share on other sites
I think perhaps one of the most emotive issues within this is the idea that to cure is to take away autism. I read recently that Asperger's Syndrome is autism in its pure form without accompanying learning difficulties: I've been pondering this a while now and I actually think it fits well here. When people talk about cure, many of he things they refer to as wanting to remove, as elun discusses, are not the autism per se, but aspects associated with it and with the learning difficulties that come with autism. Removing these is about making the person's life more comfortable not about removing autism. I am autistic in the way that others are NT - it's a way of being, a brain type.

 

I have been wondering something similar for a good few years now: that a person is autistic, in the same way that another person is NT, but that both autistic and NT people can have learning difficulties which aren't 'caused' by either their autism or their neurotypicality.

 

I do hope I haven't offended anyone by saying this in a clumsy way or anything...I'm in no way belittling the huge struggles and difficulties faced by many autistic people and their families :( I certainly work with one client whose learning difficulties are so severe I wish they could be 'helped' to be in another place on the spectrum.

 

Really worried I might have offended some of you, which isn't my intention at all :ph34r:>:D<<'>

 

Bid :unsure:

Share this post


Link to post
Share on other sites

About once a month here at college, the police trainees come. What do they come for? To learn about disabilities. What's one of the classes they attend? Neurodiversity.

 

On the curbie websites, Neurodiversity is bad in the same way that 'liberal' is an insult in American politics. Raun is a curbie, hence he has trotted out all the anti-Neurodiversity canards you can imagine. Because of a long-standing unwritten rule(which us Autistics are not supposed to have by the way), Autistic-friendly communities tend to never question a diagnosis, especially if they have never met someone. We believe it to be extremely rude, so we don't often talk about Raun's DX, except to point out that IQ tests on any child is unreliable. The younger, the fuzzier. His actual diagnosis though, it isn't our place to question.

 

Like most of the curbies however, he doesn't reciprocate this very basic courtesy. He has repeatedly claimed Autistics that are not anti-Autism are 'high-functioning' or diagnosed with the mythical 'mild' Aspergers. Pointing to Amanda Baggs' blog doesn't appear to shift his view, he's quite immune to facts.

 

What he really doesn't like about Britain is that we are now training our police in Neurodiversity, and other such unacceptable attitudes. So he has now generalised the canards used against Autistics on the internet and applied them to the whole of Britain. If you aren't trying to cure your child, you're a child-abuser. Any problems that persist, you're simply not doing enough. It's funny how when Autistics point out that irresponsible parental behaviour damages all Autistics, they trot out the 'refridgerator mother' accusation comparing us to Bettelhiem, but it's perfectly alright if they actually do accuse other parents of being negligent when they are not.

Share this post


Link to post
Share on other sites

I don't disagree with Raun's diagnosis. I do disagree with the people who saw fit to set out his life at the very young age of 18 months.

Share this post


Link to post
Share on other sites

Yes, it seems that the pendulum was sent very far one way and he sent it swinging back to the opposite extreme. In his mind, if they said he's Autistic and this means his life is done for, then to actually get anywhere must mean he is no longer Autistic. Quite picky about what they choose to disprove them curbies.

Share this post


Link to post
Share on other sites

sorry to be a pain but can someone sum up what happened in this pograme? My boss keeps catching me on here and i cant read the whole thread until i get home!!

Share this post


Link to post
Share on other sites
Like most of the curbies however, he doesn't reciprocate this very basic courtesy. He has repeatedly claimed Autistics that are not anti-Autism are 'high-functioning' or diagnosed with the mythical 'mild' Aspergers. Pointing to Amanda Baggs' blog doesn't appear to shift his view, he's quite immune to facts.

 

It's funny how when Autistics point out that irresponsible parental behaviour damages all Autistics, they trot out the 'refridgerator mother' accusation comparing us to Bettelhiem, but it's perfectly alright if they actually do accuse other parents of being negligent when they are not.

 

Hi Lucas/All -

I said earlier in this thread that Ruan Kaufman is one very untypical 'tip' from a much larger iceberg. With every respect to Amanda Baggs, she is another. Neither can be held up legitimately as representative of autistic people generally - high functioning or otherwise.

 

While I take you point about the (apparent) hypocrisy, it does seem that parents, generally, are twixt the devil and the deep blue sea - attacked by the NT establishment as the 'cause' of many of the children's problems, and targeted in exactly the same way by certain sectors of the autistic community.

 

On the question of co-morbids (i.e. learning disabilities) raised earlier in the thread, I think that it does play a part, but that there are other factors too that go to make up the 'whole'. Additionally, my own feeling is that where learning disability is a factor the two things compound the effect of each other, and that the more 'profound' the difficulties in one area the bigger the 'knock on' effect in the other. Hope that makes sense?

 

As has already been expressed - some very emotive stuff in this thread. Great to see all these different points of view addressed and discussed with such consideration.

 

L&P

 

BD :D

Share this post


Link to post
Share on other sites

>:D<<'> Sorry Bullet

It isn't you, it's me!! This is just a very emotive topic for me and I probably shouldn't have got involved in it. Anything involving 'cures' etc really gets to me and I end up going over the top about it. It's just that I do view his autism as a disability which I would not wish for him to have as it so so deeply affects every member of our family. Today I feel tired (3hrs sleep last night) and sad and without much hope. I would never wish to minimise anyones difficulties. Sorry again >:D<<'>

Elun xxx

Share this post


Link to post
Share on other sites

"Elun - my daughter is no where near the functioning level that you have with your son. Yet if I could take away her sadness & depression, her frustration and anger, her loneliness and lack of self worth then I would - by doing that no doubt it would change the person inside -"

 

I had to reply to this as it struck such a chord with me. I was desperately unhappy as a teenager, I have my diary from that time in which I wrote "something must be wrong with me". I went through horrendous bullying and I was unable to ask for help or often to show any reaction. I never went into town with anyone, never had a date, never phoned up or was phoned by someone for a chat, nobody ever came round my house. On a good day I could talk to someone in the classroom during a lesson and then overhear them laughing about me. I had no self worth, no sense of esteem. There was one lad who would talk to me at the youth group and even he ignored me at school.

But then two things happened. The first was that when I went to VI form there were some older students in the next year who, because they had attended a different school, didn't know me and didn't judge and when they saw me standing on my own in the common room they invited me over. For the first time there were people outside my family who didn't seem ashamed to be with me. Who didn't cast snide comments at what I liked to do, or how I looked, or the fact I couldn't make eye contact without a lot of difficulty. I'd never made any nasty comments about anyone, I'd never mocked anyone for the way they did things and yet for years it had been drilled into me that because I couldn't see things or do things the way most of the other pupils did, that there was something wrong with me. When I met people who accepted me for me my confidence soared. They left and for the last year I was mostly on my own again, but I then felt much more confident.

The other event was meeting my now husband and eventually his friends. I had never flirted, never known to show anyone I was attracted to them and I still can't do it now. People talk of the complexities of dating, well, my now DH and I talked for several weeks about the lectures before we even knew each others names. There was no date as such, just a night out with a group of others that ended in us kissing and then the gear shifted from friends to friends who went a bit further and got a bit closer. In many ways the fact I didn't realise how different I was helped, as I didn't think to try and put on an act. He was only the second person I've ever dated and if he had not been like me in a lot of ways, things would not have worked out.

If someone had said to me at the age of 15, that in 17 years time I would have the confidence and self esteem to be happy with myself, to realise that whilst I am far more perfect I am far from imperfect either I would not have believed them. When I received my diagnosis (mum's response "well, I always knew you were different) and told people on another forum I got so many supportive replies back with loads saying "don't change". I hope that one day - and soon - your daughter realises her self worth.

Edited by Bullet

Share this post


Link to post
Share on other sites

Elun1, you have no need to apologise. There are aspects of me that are disabling, eg I often can't let go of things to throw them and freeze up and there are aspects of Tom that are disabling. If I didn't think so I wouldn't claim DLA for him. I would love for him to know that when he soils himself he is to call out to be changed rather than just leaving it on a good day and covering himself and surrounding furniture with it on a bad day. I bet my mum, who was known throughout the neighbourhood as "poor Mrs xx" because of my severe tantrums, my running away constantly (I was also known as Houdini) must have longed for me to tell her why I was upset (I did calm down a lot when I was older but still struggle to ask for help or say what is wrong). When Tom gets upset because his routine has to stop and he can't say "Tom sad" that upsets me (I try and let him have his routines as much as possible).

But I am very lucky in that if I cannot do something, I can often find an alternative path and that is the thing that I would like for your son, that if he has difficulties that he cannot overcome then either he does have somebody who will help him, or he will be able to learn alternatives. That's why I want better support for people on the spectrum, better understanding of the real difficulties faced that go beyond environmental factors and also better understanding of the value and worth of every person on the spectrum and the positives that it can bring. I've never known what it's like to be manipulative, to try and be nice to someone so I can get something. When my son comes and clambers on my lap and gives me a kiss with his forehead I know he's doing it because he loves me and not because he'd like some chocolate.

Share this post


Link to post
Share on other sites

Thanks. I very much wish for better understanding of our children too. At the moment it just feels like an uphill struggl and I am fighting to find the positives. :wallbash::wallbash: The lack of sleep doesn't help though. I've also spent far too much of the day on here when I should have been planning lessons (my fault!!) Sometimes I can't wait to get back to my class for a bit of peace, home is much harder!!

xx

Share this post


Link to post
Share on other sites
I have been wondering something similar for a good few years now: that a person is autistic, in the same way that another person is NT, but that both autistic and NT people can have learning difficulties which aren't 'caused' by either their autism or their neurotypicality.

 

On the question of co-morbids (i.e. learning disabilities) raised earlier in the thread, I think that it does play a part, but that there are other factors too that go to make up the 'whole'. Additionally, my own feeling is that where learning disability is a factor the two things compound the effect of each other, and that the more 'profound' the difficulties in one area the bigger the 'knock on' effect in the other. Hope that makes sense?

 

Absolutely - agree with both. I suppose it's something that has always worried me slightly, even pre my own diagnosis. My brother's diagnosis is severe autism with learning difficulties, but it has always seemed to me that he is seen as autistic and that the additional problems he has are somehow subsumed into the autism label. I don't know enough about Kanner autism to know if this is right/wrong/normal/etc., it's just something I've often thought about. I think BD has a point of the issues working in tandam and at times exacerbating one another - I just wonder if the real issues are addressed - and (and I hope this doesn't offend anyone) - if you cured (i.e. removed) his autism, what would be left - i.e. what effect do the learnng disabilities have on him alone? I don't think the research has really got to grips with comorbids, what they mean and how they interact and I think it's a really interesting area particularly when we look a when a comorbid is labelled as such. For instance, one of my comorbids is dyspraxia, yet many of the issues within this would also come within AS - where is the cross over and why do I get a dyspraxia comorbid dx when someone else would be labelled as having similar difficulties as part of their AS?

Share this post


Link to post
Share on other sites

Mumble et al

 

You are touching on a particular bugbear of mine in that it often seems that professionals are very happy to accept the 'autism' label and assume that it ends there and do not bother to see if there are any other co-morbids which would be amenable to help or treatment - i.e. depression, bi-polar, adhd, anxiety, tics, ocd, etc., etc. These are areas which can cause huge problems and get virtually ignored or put down to somehow being a part of autism. Makes me mad!

 

Barefoot

Share this post


Link to post
Share on other sites
Mumble et al

 

You are touching on a particular bugbear of mine in that it often seems that professionals are very happy to accept the 'autism' label and assume that it ends there and do not bother to see if there are any other co-morbids which would be amenable to help or treatment - i.e. depression, bi-polar, adhd, anxiety, tics, ocd, etc., etc. These are areas which can cause huge problems and get virtually ignored or put down to somehow being a part of autism. Makes me mad!

 

Barefoot

they did this all the time at the instution am used to live in,if one person had severe OCD with autism,that meant to them,we all had severe ocd.

Edited by TuX

Share this post


Link to post
Share on other sites
I don't think the research has really got to grips with comorbids, what they mean and how they interact and I think it's a really interesting area particularly when we look a when a comorbid is labelled as such. For instance, one of my comorbids is dyspraxia, yet many of the issues within this would also come within AS - where is the cross over and why do I get a dyspraxia comorbid dx when someone else would be labelled as having similar difficulties as part of their AS?

 

It's a ridiculous factor in dx - one i know Lucas has raised many times along with others - that any 'negative' is ascribed to AS/ASD (rather than inviting independent assessment/interpretation)while any positive is viewed as an area in which the autistic person functions 'neurotypically' :angry: It's not only professionals that do it either...

The problem's compounded (or at least among some professionals I've encountered) by this absolutely ridiculous piece of closed thinking called a 'heirarchy of diagnosis' which implies that a co-morbid condition that's 'less disabling' than the main DX is effectively disregarded! :wacko:

I ran into this with getting Ben's ADHD acknowledged, and it took nearly two years of arguing the toss to overcome it.

If you look at the 'heirarchy of diagnosis' principle from another angle - say, as first aid interventions - the implicaction is that you treat the main injury only, rather than the (quite sensible) prescribed intervention of treating the most severe injury first...

 

L&P

 

BD :D

Share this post


Link to post
Share on other sites

Which is exactly the reason i pushed and pushed to get M's other difficulties acknowledged.

 

Personally, without the 'other' dx's how on earth would anyone begin to understand and provide appropriate care/understanding if they didn't know the 'whole picture'. M is a little pick-and-mix! With each different comorbid compounding on the other....

Luckily, i have a very supportive paediatrician - but even with her backing and support, it took some pressure. :wallbash:

Share this post


Link to post
Share on other sites
OK I'm home from work, fed & watered.

 

Apols to anyone I may have offended - I knew this would be a controversial thread but hope you all know me well enough to know that I celebrate neurodiversity in all its forms (and I want to stick my fingers down my throat having said that but I cant think of a better way of putting it) :lol:

 

I spose what I'm trying to say is...

I came across Son Rise, ooh *counts on fingers* about 14 years ago when JP was newly dx'd. I spoke to them several times on the phone, got letters from them for years, & read all the books.

 

I dont believe the Kaufmanns are charlatans. I think they are genuine, energetic, charismatic people who stumbled on a method which appeared to "cure" their son and wanted to share it with others. They have bills to pay, so charge for this. (And remember, Aspergers had a much lower profile in those days, JP was one of the first tranche to be dx'd, so they may not even have realised that this might be just their son moving from classical autism to Aspergers, as sometimes happens)

 

I havent heard of anyone else being cured by this method, but plenty who have benefitted. Its very benign & life affirming.

 

Whilst I was mulling over whether to go down this route with JP, other "cures" started to appear, usually accompanied by books written by parents convinced their child had been cured. Auditory integration therapy (The Sound of a Miracle), the Lovaas method (Let Me Hear Your Voice) the Higashi method ..... there were no independent evaluations of these methods, so I was left thinking, if I choose the wrong method I'll waste years, this window of opportunity may close.... very stressful, and in the end I decided, go down the educational route, get a statement & get expert input into school. Low cost, low tech & effective. And looking back now he's 18 I think I did right.

 

So, Raun Kaufmann. What do we make of him? There are several possibilities:

 

1. He was misdiagnosed. Possible, but if you read the books I can understand why he was dx'd autistic. And surely there would be others who were misdiagnosed & made a similar recovery? I've never come across anyone else.

 

2. He only thinks he's "cured". He's really AS. Again, possible. Plus after all these years of claiming to be cured, there must be huge pressure on him. Maybe deep down he suspects he's AS but could never admit it, else the foundations of Son Rise come crashing down.

 

3. He really is "cured". Now don't jump on me, I'm not saying he is. And if he really is, why is he the only one that we've heard of?

 

I didnt see the programme, but it sounds like he was saying the Brits are way behind the yanks in this area. I beg to differ. I think they are stuck in the time warp, not us. Ten-twenty years ago, autism was regarded as a very negative thing. If you could cure it, woohoo! Its different now. Just as deaf people became politically aware, the same thing is happening in the autistic "community" as evidenced by Autscape, the wealth of websites/forums run by/for autists, etc. I dont think the Kaufmanns have quite grasped that sea-change in attitude.

 

I hope that clarifies what I meant.

This almost qualifies as an Emily-length post :lol:

*goes for a lie down in a darkened room*

 

I never found that whats her name of good morning Fern , ###### fern,I thought that was a plant, anyway bring back Richard thats what I say I do like A ###### with me toast, If their was a cure for autism I would have found it.

If anyone finds a cure for dsylexia please sent it to me ,cause it slows me up and drives me ###### mad.

 

Sharsxoxoxoxox

 

 

Shars

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...