Should I tell ds that he is disabled?

[dana]

Hi

 

My ds(11) knows about his ASD but I explained it to him as being different in a certain way. I find it very hard to tell him that it is a disability. He told me that he is not disabled when I only mentioned that I want to help disabled children.

 

I don't feel right to do that, it breaks my heart and it will distroy his self-esteem and confidance if I try to convince him that he has disability.

 

Any opinion and advice appreciated.

 

Danaxxx

[oxgirl]

Hi there,

 

Not sure why you'd feel the need to convince him he has a disability. My lad is nearly 17 and is very sensitive to word 'disabled', he certainly doesn't want to see himself as disabled and I do all I can to assure him that he is not. He received a letter about applying for a concessionary bus pass the other week, but he was disgusted that it was even suggested for him, as he felt it should just be for 'disabled' people and he has refused to apply. Personally, I try to highlight the positives of AS to my lad, and instill in him the thought that having AS is an advantage in some aspects, making him brilliant at science, etc. and helping him to focus on things. I certainly wouldn't want to highlight any areas where it might hinder him, his self-esteem is in trouble enough as it is.

 

I'd steer well clear of the 'd' word, if I were you, but just my opinion.

 

~ Mel ~

[Tally]

I have had to come to terms with the fact that I am defined as disabled due to my Asperger's and because I also have ME. I think the fact that the ME is an illness that causes me a lot of difficulties, it's easier to accept that this is a disability than if I just had Asperger's. Because I am an adult, I have had to make decisions about my limitations myself, and apply for DLA myself, so it's difficult to avoid the fact that I am disabled really.

 

I do think it's possible to explain to your son that he is defined as disabled, without needing to make it traumatic and harmful to his self-esteem.

 

You could perhaps explain that people with Asperger's are protected by the same laws that protect people with some other kinds of disabilities, because sometimes people with Asperger's have difficulties that can cause them problems in school or in work. You could talk about other kinds of laws that protect other groups such as laws against racism, sexism or homophobia - and talk about how these types of laws are not about people having something bad about them, but they need to make laws because people sometimes don't treat people as they should.

 

You could tell him about the social model of disability, which you can read a bit more about here: http://en.wikipedia.org/wiki/Social_model_of_disability

 

Alongside acknowledging his difficulties, you could also write a list together of all the things your son is really good at. Perhaps you could specifically think of things that his Asperger's makes him particularly good at.

[baddad]

Totally agree with Tally. Disability should not be a dirty or shameful word - it shouldn't break your heart to apply it to your son or destroy his self-esteem or confidence to have it applied to those areas of his life that cause him difficulties (or 'disable' him). Applying such negative judgements to the disability of autism can only have a negative effect on how your son 'judges' other disabled people - whether their disability is a physical one or something less visible like learning or developmental delays. One of the most disabling things our children and all disabled people have to overcome are the prejudices and judgements that are applied to disability. If our own responses to our own children's diagnoses reflect those prejudices and negative judgements (and avoiding the word where it applies must, by definition, do so)then it will almost certainly have a negative impact. Positives, for any disabled person, arise from acceptance, and the knowledge that those significant to them mirror that acceptance and that it doesn't diminish them, the disabled person, in any way. If wider society's ignorance does diminish the disabled then that is something to fight against, not to embrace.

 

Hope that helps.

 

L&P

 

BD

[dana]

Thanks for your replies.

 

I see what you mean, Baddad, and basicly I agree what you say. The thing is, I really don't see his ASD as disability myself. I explained to my son that having ASD is the way how he is different to some other children and that we are all different, that some children are better in some things than him (like socialising and focusing) and that he is better than other children in other things (he has past piano grade 2 recently with merit, almost distinction).

 

I don't like the word 'disabled' in general. It is negative per se. It focuses attention on what a person CANNOT do, on imperement rather than the whole person, his/her character, dreams, abilities, wishes, hopes... One thing is to accept what one cannot do and learn how to cope with the world and my son hasn't got problems with that: he accepts SALT and OT therapies, tries hard to overcome anger (he is much better with it now)etc. However, totaly different thing is to put a label on the whole person for it.

 

I know quite a few 'disabled' people who themselves wouldn't like to be seen as such. They like to be seen for WHO they are rather than what they cannot do.

 

Danaxxx

Edited August 19, 2010 by dana

[baddad]

 

 

I know quite a few 'disabled' people who themselves wouldn't like to be seen as such. They like to be seen for WHO they are rather than what they cannot do.

 

Danaxxx

 

Hi again Dana - I totally agree about disabled people being seen for who they are rather than as a 'label', but that only goes so far... There's this terrible, terrible cliche, 'I don't see the wheelchair, I see the person in it'... try pushing someone in a wheelchair up a hill without 'seeing the wheelchair' and it becomes much clearer that ignoring (or, lets be honest, pretending to ignore) something so fundamental to the person's wellbeing is actually pretty patronising. As far as the word 'disabled' being negative goes, that's all due to the negative associations I touched on in my first post. Whatever other word you replace it with, the negative connotations will just move with it. There was a programme on recently where a disabled comedienne with CP was talking about her school experiences - other kids rushing up to scream 'you're a spaz' in her face. She observed, quite rightly IMO, that she probably wouldn't have felt any better if they were running up and screaming 'you're differently able' in her face. It wasn't the words that bothered her, it was the screaming, the attitude and the context. As I said, you can either embrace that 'context' by rejecting the word disabled, or autism or any other word that describes the reality of your son's situation, or you can challenge that context by refusing to accommodate the negative associations wider society wants to project onto it.

One interesting point I just noticed in oxgirl's post that seems relevant to the above: she works hard to make sure that her son's autism is only discussed in the context of the advantages such a dx might bring while she makes certain not to highlight the areas it might have a negative impact. Despite that, 'his self esteem is in enough trouble as it is'. Whatever the benefits of 'excentuating the positive' it's impossible to 'eliminate the negatives' (as the old song goes) - and if the person living with those negatives has never learned to accept them as intrinsic to the 'whole' it can only lead to conflict and distress.

I'm not saying necessarily that you should try to 'convince him' he has a disability, but if you believe his autism is disabling then neither should you shy away from the reality of that.

 

L&P

 

BD

Edited August 19, 2010 by baddad

[KezT]

Perhaps you should start with an explanation of what "dsabled" means.

 

My kids are taught that "Disabled" means tha the person has something that makes some "normal" things more difficult. Therefore Daddy is disabled because he finds it difficult to walk/pick things up, Grandpa is diabled because he is in a wheelchair and so needs extra space to go places, the postman is disabled because he ony has one arm and DS is disabled because he has AS and finds some things like who to talk to/what to talk about difficult to understand.

 

In my world being disabled does not give any excuse for not doing things, living a normal life and havng normal ambitions, hopes and dreams. It's just something that some people are, in the same way that some people have different coloured skin, are tall/short, or have a talent.

 

As he gets older, I will explain that the government/society also expects disabled people to live normal lives, get jobs, and become productive members of society, and that is why there are laws to protect them, and if applicable, benefits to help them pay for additional costs.

 

Of course, if neither you nor he honestly consider his AS to be at all disabling, then I don't see there is an issue (although the DX criteria does specify there needs to be a disabling aspect to the condition, so as he has a DX, I assume there must have been some problems). The only reason to use the label would eb if you/he wanted people to treat him differently in some way (ie allow him a quiet room at school or claim DLA). If having AS is all a positive experience or even just a "normal" one of we are all different then there is no need to ever consider him disabled. But I note you say that he is improving in his anger management, and has SALT and OT therapies, so I would say it probably is a disability to him.

[Karen A]

Hi.

Ben is 12 and has AS and dyspraxia.

He is very aware of having both diagnosis.

He was talking to me a while ago and in the course of conversation he commented that while he would change to not having dyspraxia if he could he would not want to not have AS.

Ben very much believes that having AS is part of who he is.

He just asked me what I was posting about.

He says that far from considering himself disabled he considers himself normal and everyone else to be disabled.

I admit Ben is very able in lots of respects.He does not have some of the learning difficulties experienced by many people with ASD.

However in my experience the things that most disable Ben are the attitudes of other people,ignorance,stereotypical views and lack of awareness.

I believe that given appropriate support where needed there are few things that Ben could not do.

 

Ben undoubtedly finds some things more difficult than others.

We watched him struggle for ages to climb a climbing wall on holiday.He was extremely frustrated and exhausted but determined to stick at what he wanted to do.He did far better than myself in a similar situation.

Earlier this year Ben gave evidence to school staff about a pupil who had been cutting others with a blade from a pencil sharpener.

His bravery in coming forward was commended by other parents.

Ben did what he believed was right and did not care that his peers might think him a snitch.

So I do not see Ben as being disabled either really.

I think that if a child has AS then they have a recognised disability.To what extent they go on to be disabled is difficult to predict.

I was not born with a disability.However I did have things happen in the course of my life that had a far greater impact on me than I hope Ben having AS will ever have.

 

For my husband and I it has been very important not to limit our expectations of Ben based on the fact that might have AS.I say might have because we were told for three years that Ben did not have AS.

In those three years Ben did many things that we could easily have ruled out completely on the basis of Ben having AS.

He engaged in individual psychotherapy which most professionals say people with AS cannot do.

He is also tipped by his year head as the pupil most likely to become an author having been considered behind his peers at age 7.

If we had decided that Ben was disabled and so could not do these things we might never have known and Ben would have been very frustrated.

 

That is not to say I do not push for appropriate accomodations where needed or acknowledge that Ben finds some things difficult......those that know recognise that I can be very assertive if need be.

Edited August 20, 2010 by Karen A

[baddad]

I'm getting very confused now. Autism is a disability. Any child not disabled by his autism isn't, by definition, 'disabled' enough to be autistic. Back to something of a bug-bear of mine: when does 'autism' become 'autism' (or AS AS for that matter?. If a child isn't disabled don't call him disabled - but don't call him/her 'autistic' either, because the two go hand in glove. I'm all for promoting the positives of disability/autism - quite often 'rant' about the negative assumptions that are made by people (including parents, sadly)on the basis of the labels, but i think disassociation the child from the labels other than when it suits (as Kez pointed out above - i.e. to gain concessions in school or to claim Disability Living Allowance)is anything but positive.

And yes, I would agree that many (but not all) aspects of disability are social constructs. But disassociation, again, only promotes those limiting constructs rather than challenging them... 'I've got nothing against the disabled, i just wouldn't want my son/daughter counted among them, iykwim'.

 

I'm actually quite disturbed to see the word disability being viewed so negatively by parents of children with disabilities. If we can't bring oursleves to acknowledge disability and accept it, what hope is there for wider society ever doing so?

 

L&P

 

BD

[Karen A]

I'm getting very confused now. Autism is a disability. Any child not disabled by his autism isn't, by definition, 'disabled' enough to be autistic. Back to something of a bug-bear of mine: when does 'autism' become 'autism' (or AS AS for that matter?. If a child isn't disabled don't call him disabled - but don't call him/her 'autistic' either, because the two go hand in glove. I'm all for promoting the positives of disability/autism - quite often 'rant' about the negative assumptions that are made by people (including parents, sadly)on the basis of the labels, but i think disassociation the child from the labels other than when it suits (as Kez pointed out above - i.e. to gain concessions in school or to claim Disability Living Allowance)is anything but positive.

And yes, I would agree that many (but not all) aspects of disability are social constructs. But disassociation, again, only promotes those limiting constructs rather than challenging them... 'I've got nothing against the disabled, i just wouldn't want my son/daughter counted among them, iykwim'.

 

I'm actually quite disturbed to see the word disability being viewed so negatively by parents of children with disabilities. If we can't bring oursleves to acknowledge disability and accept it, what hope is there for wider society ever doing so?

 

 

 

L&P

 

BD

 

Hi.

I do understand that you might find some aspects of my post confusing.

I certainly do not view disability negatively.

Anyone who knows me IRL would know that.I spent all of my nursing career working with individuals with pysical disabilities.

 

As regards Ben what can I say.

He has a diagnosis of AS which is a disability.

He was given that diagnosis by a CAMHS psychiatrist following a request for assessment by a colleague not by us as his parents.

Currently Ben has a Statement of SEN and is funded for significant support in mainstream.

I believe that at some stage in the future Ben may make enough progress to be able to decide that he does not believe AS has a significant impact on his life.

In that case he could decide whether he wants to regard himself as having a disability.

Unless he joins the armed forces or has to make a decision about whether to declare his disability on a job or university application I think that at eighteen the choice as to whether Ben regards himself as having a disability would be up to him.

 

 

I have wondered whether in the future the latest developments in scanning will be avalable to those with a current AS diagnosis.

I would be interested to see the results having spent three years with CAMHS professionals who could not agree.

At the current time Ben is finally doing extremely well thanks to some excellent support.

I think Ben is in no small measure in this position due to three years of hard work on our part.

Ben has an AS diagnosis which I never wanted him to have and are still coming to terms with.

If you feel that because Ben insists on not being disabled by his disability he should not have a diagnosis then that is your view.

Perhaps I should tell Ben next time he struggles desperately to fit into mainstream school or refuses to use the computer that he could use every lesson that he should just accept that he has AS and use all help offered.

Edited August 20, 2010 by Karen A

[baddad]

Perhaps I should tell Ben next time he struggles desperately to fit into mainstream school or refuses to use the computer that he could use every lesson that he should just accept that he has AS and use all help offered.

 

Well lots do! But of course you know that's not what i'm saying (unless there's some other reason for the whistle-whistle-whistle-devil). And yes, in some ways it is up to Ben to decide when he's eighteen whether he feels he is 'disabled' or not, but hopefully he will have enough confidence if he does feel he is disabled not to shy away from the word, and enough of a conscience if he does not feel he is disabled to not exploit his (by his own admission 'inappropriate') diagnosis in a cake-and-eat-it/get-out-of-jail free sort of way as and when it seems useful.

I come back to what I said in my last post: If the parents of disabled children are unwilling to challenge the stigma attached to the word 'disability' what hope is there? Denial is one of the classic stages associated with disability, but it is usually indicated as a milestone on the road towards acceptance rather than as a stepping off point.

 

L&P

 

BD

[Karen A]

Well lots do! But of course you know that's not what i'm saying (unless there's some other reason for the whistle-whistle-whistle-devil). And yes, in some ways it is up to Ben to decide when he's eighteen whether he feels he is 'disabled' or not, but hopefully he will have enough confidence if he does feel he is disabled not to shy away from the word, and enough of a conscience if he does not feel he is disabled to not exploit his (by his own admission 'inappropriate') diagnosis in a cake-and-eat-it/get-out-of-jail free sort of way as and when it seems useful.

I come back to what I said in my last post: If the parents of disabled children are unwilling to challenge the stigma attached to the word 'disability' what hope is there? Denial is one of the classic stages associated with disability, but it is usually indicated as a milestone on the road towards acceptance rather than as a stepping off point.

 

L&P

 

BD

 

 

Ben was diagnosed by an extremely experienced CAMHS psychiatrist.The specialist ASD outreach teacher finds it laughable that anyone could ever think he did not have AS.

I know that you have vociferous opinions in which you state openly and frequently about parents who diagnose their own children.Your views on adults who self-diagnose are even more outspoken.So I am not sure how you could think that a child of twelve is in any position to decide that his own diagnosis is ''inappropriate'' .That is certainly not what Ben would want people to think.

Karen.

[baddad]

Ben was diagnosed by an extremely experienced CAMHS psychiatrist.The specialist ASD outreach teacher finds it laughable that anyone could ever think he did not have AS.

I know that you have vociferous opinions in which you state openly and frequently about parents who diagnose their own children.Your views on adults who self-diagnose are even more outspoken.So I am not sure how you could think that a child of twelve is in any position to decide that his own diagnosis is ''inappropriate'' .That is certainly not what Ben would want people to think.

Karen.

 

Whoa there neddy! I didn't anywhere say that a child of 12 is in any position to decide that his diagnosis is 'inappropriate' - I quite clearly said 'if he decides when he's eighteen' which was prompted by your own post here:

 

I think that at eighteen the choice as to whether Ben regards himself as having a disability would be up to him.

 

Bad enough your putting words in my mouth and then taking umbrage with them - but when it's your own words that really takes the biscuit!

 

And yes, I am outspoken about the dangers of casual diagnosis and assumed diagnosis - but whatever my opinions about your son's diagnosis I have not voiced them here or anywhere else on the forum or at any other time, and I certainly haven't 'challenged' the diagnosis of the 'extremely experienced specialist at CAMHS'. If you have a sensitive spot surrounding the diagnosis - for whatever reason - that is your problem, not mine; so please don't project them onto me or make unfounded accusations based on that projection. Sorry if that's coming across as 'vociferous' or even 'blunt', but TBH I'm getting sick and tired of people making nasty allegations on what they think I've said rather than taking the trouble to read what I've actually said.

 

In actual fact the accusation you seem to be making here - that I'm somewhow 'challenging' your sons dx, is precisely the opposite of what I'm posting about - which makes your interpretation doubly confusing. The scenario outlined by the OP is one where diagnosis has been made, has been accepted by the parent as appropriate, but where the parent is suggesting denying or hiding the implications of that diagnosis from the child.

 

Anyhoo, getting back to the OP and what I've actually said... I think there is a huge amount of social stigma attached to the word 'disability'. I think parents of disabled children, or disabled people themselves who try to disassociate themselves from the wider disabled population, not only perpetuate that stigma but actually reinforce it. I certainly wouldn't challenge someone's 'right' to do that, and I am strongly opposed to factions of the disabled population who think it is reasonable to 'out' people who make the choice to disassociate or to level 'Uncle Tom' accusations at them. But if asked, on an open forum, to express an opinion I will do so, regardless of how challenging that might be to some.

 

L&P

 

BD

Edited August 20, 2010 by baddad

[Karen A]

Whoa there neddy! I didn't anywhere say that a child of 12 is in any position to decide that his diagnosis is 'inappropriate' - I quite clearly said 'if he decides when he's eighteen' which was prompted by your own post here:

 

 

 

Bad enough your putting words in my mouth and then taking umbrage with them - but when it's your own words that really takes the biscuit!

 

And yes, I am outspoken about the dangers of casual diagnosis and assumed diagnosis - but whatever my opinions about your son's diagnosis I have not voiced them here or anywhere else on the forum or at any other time, and I certainly haven't 'challenged' the diagnosis of the 'extremely experienced specialist at CAMHS'. If you have a sensitive spot surrounding the diagnosis - for whatever reason - that is your problem, not mine; so please don't project them onto me or make unfounded accusations based on that projection. Sorry if that's coming across as 'vociferous' or even 'blunt', but TBH I'm getting sick and tired of people making nasty allegations on what they think I've said rather than taking the trouble to read what I've actually said.

 

In actual fact the accusation you seem to be making here - that I'm somewhow 'challenging' your sons dx, is precisely the opposite of what I'm posting about - which makes your interpretation doubly confusing. The scenario outlined by the OP is one where diagnosis has been made, has been accepted by the parent as appropriate, but where the parent is suggesting denying or hiding the implications of that diagnosis from the child.

 

Anyhoo, getting back to the OP and what I've actually said... I think there is a huge amount of social stigma attached to the word 'disability'. I think parents of disabled children, or disabled people themselves who try to disassociate themselves from the wider disabled population, not only perpetuate that stigma but actually reinforce it. I certainly wouldn't challenge someone's 'right' to do that, and I am strongly opposed to factions of the disabled population who think it is reasonable to 'out' people who make the choice to disassociate or to level 'Uncle Tom' accusations at them. But if asked, on an open forum, to express an opinion I will do so, regardless of how challenging that might be to some.

 

L&P

 

BD

 

I do apologise.

I have reread the previous post and appreciate it included ''when he is eighteen'' which I had missed.

Karen.

Edited August 21, 2010 by Karen A

[JsMum]

Hi

 

My ds(11) knows about his ASD but I explained it to him as being different in a certain way. I find it very hard to tell him that it is a disability. He told me that he is not disabled when I only mentioned that I want to help disabled children.

 

I don't feel right to do that, it breaks my heart and it will distroy his self-esteem and confidance if I try to convince him that he has disability.

 

Any opinion and advice appreciated.

 

Danaxxx

 

 

I know that for my son it was very difficult to help him understand he has a disability because he had a different interpritation to what a Disability was, usually a physical, so a person in a wheelchair is disabled.

 

Or a man with a guide dog with blind on his waist band was blind and he understood they are disabled, he understood that, but he didnt understand that he too was disabled because he knows has a lot of abilities, but what he also has is impairments.

 

His Impairments are in social and communication, emotional and behavoural, speech and language and mental health.

 

J didnt think he coul be Disabled because he is intelligent and bright, funny and active.

 

A disability is not about not been totally unable to do something, but about having a difficulty in every day life skills such as interacting, socialising, understanding, communicating, expressing, functioning on a day to day basis.

 

So it isnt about been totally unable to do something, but a difficulty because of an Impairment that is severe to mild and these can be what is called a spiky profile, very able in some tasks, but very impaired in others.

 

We did some research on different disabilities, and what a disability is so he got an understanding what Disabled means.

 

J recieves a Bus Pass and has a companion symbol because he requires supervision and guidance, he can walk, even run to the bus, but he requires supervsion because he walks out in traffic and has no awareness of danger, on a bus he has high anxieties due to unfamilair people, and hypersensitivity to sounds and smells so he is very nervous on public transport and requires a lot of support, planning and preparing.

 

J recieves a Bus Pass because of his social, communication, emotional, behavioural needs.

 

A disability is about impairments and Needs.

 

JsMumx

Edited August 21, 2010 by JsMum

[dana]

Thank you all for your replies.

 

I just want to point out that my OP was a question not a statement. I expressed how I feel about it but that doesn't neccessarily mean that to act upon my feeling is in the best interest of my child. That is why I wanted to hear from you your oppinions and experience about it before I decide wheather and/or how to tell ds about it.

 

I appreciate all your views and advice. 'Acceptence' is indeed the hardest step to take. The big question is when and how and I personally think that the wording is important, esspecilally for the child who is still developing his sense of self. Even for NT people is sometimes/often hard to accept their shortcomings in everyday life (IMO, that is one of the reasons this world is the way it is!).

 

I think the most important thing is wheather or not my son is aware that he needs help and is willing to learn to cope in this world. And I am deffinitly not going to deny to him the fact that he does have problems. It is important that he is aware of them in order to accept them and accept the help available. If he decides to call them 'disability' later on in life- I don't have any objections. It will be his choice.

 

Danaxxx

[Karen A]

Thank you all for your replies.

 

I just want to point out that my OP was a question not a statement. I expressed how I feel about it but that doesn't neccessarily mean that to act upon my feeling is in the best interest of my child. That is why I wanted to hear from you your oppinions and experience about it before I decide wheather and/or how to tell ds about it.

 

I appreciate all your views and advice. 'Acceptence' is indeed the hardest step to take. The big question is when and how and I personally think that the wording is important, esspecilally for the child who is still developing his sense of self. Even for NT people is sometimes/often hard to accept their shortcomings in everyday life (IMO, that is one of the reasons this world is the way it is!).

 

I think the most important thing is wheather or not my son is aware that he needs help and is willing to learn to cope in this world. And I am deffinitly not going to deny to him the fact that he does have problems. It is important that he is aware of them in order to accept them and accept the help available. If he decides to call them 'disability' later on in life- I don't have any objections. It will be his choice.

 

Danaxxx

 

 

Hi again.

One thing I have found is that all of our family members have come to terms with Ben having AS and are still learning about what that might mean in terms of Ben having a disability at different rates and in different ways.

 

Our elder son is two years older than Ben.He was about ten when it was first suggested that Ben might have AS.He did not appear at all surprised.He just commented in his own way''take a look at the holiday photos '' .Ben had been in charge of the camera on a trip to Crete with the result that photos were close up pictures of many many inertesting features including drane covers and signs but no pictures of people at all.

J has since then continued to be very supportive and accepting of Ben but that has not prevented occasional frusration when comments are made in front of friends.

 

Ben himself had known that he might have AS for three years.CAMHS psychotherapists were certain this was not the case.We had a very good relationship with them and they informed us that a colleague could provide a 3di specialist assessment previously only available at GOS.The test was supposed to be the gold standard and 95% accurate.The psychotherapists were certain it would show Ben did not have AS.Ben himself decided that he wanted to know.Following the tests much to shock of the psychotherapists the CAMHS psychiatrist said that the 3di clearly showed Ben did have AS.Ben was pleased to know.

Although he is currently very ok with things and does not regard himself as having a disability I am sure that could change as he develops.It is not unusual for teenagers to be very accepting but then later to be very angry.It is a normal part of development.

I used to be a district nurse.I nursed people who had experienced spinal injuries many years previously.Even those who had come to terms with it experienced periods of huge frustration.

 

As I side issue I am currently following Melanie Reid [spinal column] in the Times Magazine.Melanie is a times writer who broke her back in August.The account is one of the best accounts of coming to terms with disability I have ever read.

 

I spent three years in psychotherapy with CAMHS being told in a very kind way that Ben did not have AS.Rather he had difficulties which were the result of my being very mentally unwell in the first two years of Ben's life and the impact those difficulties had had on the family unit.

For me the AS diagnosis created huge mixed emotions.The possibility to move on and stop blaming myself.But also awareness that psychotherapy could not make Ben better as promised by specialists I regarded with little less than awe.I had never planned for Ben to have a disability.I was told Ben would have psychotherapy,we would have psychotherapy and if we were all committed to it Ben would get better.

So I do not pretend to be anything but a bit confused.

 

My husband had been told by CAMHS for three years that Ben did not have AS.We should not even think about AS and certainly I should not be bothering with this Forum.He knew very little about AS until he went along to a ''Help'' [NAS] course just after Ben was diagnosed.He spent the morning telling me ''that is just like Ben''.He is now contiuing to work out what the diagnosis means in practice.

 

That is a very long winded way of saying that people come to terms with things in different ways and at different times.Feelings can change.All anyone can do is their best with the information they have.

I know other people here who appear to have no difficulties with their child having an AS diagnosis.They are much further on than myself in terms of accepting that their child has a disability.I do not pretend to be there yet.The reality is that Ben appears to be more aware and accepting than myself.

Karen.

Edited August 21, 2010 by Karen A

[Karen A]

In actual fact the accusation you seem to be making here - that I'm somewhow 'challenging' your sons dx, is precisely the opposite of what I'm posting about - which makes your interpretation doubly confusing. The scenario outlined by the OP is one where diagnosis has been made, has been accepted by the parent as appropriate, but where the parent is suggesting denying or hiding the implications of that diagnosis from the child

 

Hi BD.

I have not made a good job of this so far probably because I am more confused than I like to think.

I do wonder though for parents of children with AS is it possible to predict the implications of that diagnosis ?

 

I have no idea what the implications are for Ben.He could go on to be an author,a graphic designer[ or less likely]a guitarist in a Canadian Indie band as he hopes.

Alternatively he could become so frustrated that he drops out of school or becomes depressed.

At the minute I have no idea even what year 8 will bring.So I have no idea what the implications of the diagnosis are.

 

Ben is painfully currently aware that it is impossible to predict the course of a life even for the briefest time.As I posted elsewhere his history teacher was a professor and academic.He was regarded as a leading figure in teaching history in secondary schools.He was due to teach Ben period five after lunch one day last term.He left the lower school but never arrived at the upper school site which was five minutes walk away.He died in a tragic incident at the tube station between sites.

Staff who worked at the school have not yet begun to come to terms with what happened to a forty odd year old successful married individual.So I do not pretend to be able to predict anything.

 

I was told very clearly by the CAMHS psychiatrist who diagnosed Ben[ at the appointment for feedback on the 3di] that far from being a negative thing she knew lots of people who were gifted in specific areas because they had AS.

Indeed she said she sometimes wondered if it would be useful to have it herself.....

I am not joking.

My husband has often reminded me of the conversation when Ben is having an awful time at school.

 

When we applied for DLA for Ben the consultant psychotherapist who worked with Ben advised us strongly that we should not discuss the application with Ben on the grounds that being labeled as disabled might have a negative effect on Ben's self-esteem.She knew him better than I do.

She supported the 3di assessment which was requested by her Specialist Registrar but she most certainly did not think that an AS diagnosis should lead to Ben having a view of himself as disabled.

 

I should say that we did not agree with either of these views.

As it was I was not prepared to not discuss the DLA with Ben when we obtained it as I would not be dishonest with him.

However it does show that not even all professionals agree that it is always appropriate to discuss the full implications of the diagnosis with the child.

Karen.

Edited August 21, 2010 by Karen A

[SuzyQ]

Hi, ok got bored again reading the long replies, but feel i should say, my DD got her DX at 14, she has had alot of issues, but she refused to acknowledge the DX, I was told to just let her have time to come to terms about it and learn about it, and when she is ready it will be easier to talk to her, she is now 16, she still desperatley want's to be ..'normal'...her perception of it anyway!!

I have spent this time reassuring her that it is all about strengths and weaknesses, in other words there are things she is great at and others she cannot do as she has no interest in them, she is slowly getting her head around it, she hates to be known as disabled, but she has has mental health problems more than just as and adhd and will probably need some kind of support throughout her life.

Unfortunately alot of people do not understand mental health issues and do not accept them, this is again something to get to grips with, her brain works in a different was to her sisters, and that is how we are teaching her, not that it is disabled, but that it works differently. He learnig this is helping her understand why she reacts to certain things in certain ways, she also knows now that it is classed as a disability, but doesn't mean she is totally disabled.

Again I agree with who ever it was said maybe learn about the word disabled first maybe, but be prepared to take small steps. with my DD i used to try to talk to her but she would not listen and become more aggresive, but now sometimes she asks me...and when she is open to talk we talk.... all about mental health problems psychiatrists etc... she is always checking meds on the internet she is obsessed with knowing causes treatments and side effects, so often she will say she wants to try a certain med...its very amusing at times, but at others completely frustrating.

 

Good luck