Do I tell my teenage son about his diagnosis

modmo

I have a 13 year old son with a diagnosis of asperger's syndrom and ADD.
I feel he has a mild form of asperger's because apart from a few quirks (some he has grown out of) and a bit of immuturity for his age, he seems fine. He is very sociable and has many friends and seems to be popular at this mainstream school.
The problem is his school work which I feel would be down to the ADD(he is currently on medication for this). He is very behind. He's just finished 1st year and going into 2nd in Sept. His teacher has suggested he cuts down from 10/11 subjects for the junior cert to maybe doing 5. Which I feel is a good idea.
However, here is the problem. She has suggested that he goes into a special autisim unit they have at the school for the times when the rest of his class are doing the subjects that he has dropped. He doesnt under any circumstaces want to do this because there is a stigma attached and he doesnt want to be seen or known by his friends that he attends this unit.
The kids at the moment that seem to use the unit would have obvious special needs. Where as to look at my son, you would not think anything is wrong.
We have never told him about his diagnosis (he was diagnosed at 8) only because we feel he wouldnt handle it and have a complete meltdown.
He is aware his brain doesnt function the way ours does but is in complete denial that he needs any extra help etc. This makes him feel very down about himself.
We had a nightmare with him in the last few years of primary because he hated having a special needs assistant and having to leave class twice a day for resource. So far he really being enjoying secondary school (well the social side of it). We wouldnt force him to avail of the unit because we feel this could put him off going to school altogether.
The only other option is for him to sit in the class and do homework while the rest of the class is doing their subjects. He would rather this option.
The teacher feels its time for us to tell him about his diagnosis, so he will eventually face up to it and start excepting help.
However, I feel that if we were to tell him (1st he'd be in denial), then he may get very depressed. He associates special needs with people who have a physical disability or have down sysdrome etc.
Does he have to know he has a label attached. I just sure what to do next about the way forward to helping him with his education. Any advice?

Daisy M

Hi op my opinion is that you need to get advice from someone who knows what they are talking about. Who carried out a diagnoisis, you say this was done when he was 8 it may be worth having another one carried out now, personally if it were my child this is what I would do, even if I had to pay for it. An educational psycologist would be a ble to give you advice and guidelines after all this is their field. In my sons secondary school what happens when children do not take part in certain subjects is they go to a study hall or get extra help with english/maths.

Morag

I also have a son who is 13 has ASD and is just finishing 1st year in a mainstream school and shares an SNA.

You need to talk to him about it.
I think in not telling him from an earlier age you have dug yourselves a bit of a hole.

Most people looking at or interacting with my kids don't see it. We (himself and us as parents) have learned to manage him, his stresses, his moods, his needs so that most people are unaware of how he can be but they are also unaware of the amount of work that is.


"Different not less"

We work of the above prinicpal he knew most kids didn't have he same drs appointments and assessments and didn't have an sna in primary school and we try not to lie to our kids. We found watching the HBO movie on Temple Grandin and the book all cats have aspergers to be very helpful.

https://www.youtube.com/watch?v=xSMw-noNcnY

He will be as positive about this as you are. I completely understand not wanting to undermine the progress he has made his year and wanting to safe guard his self confidence and being wary of negative spirals and the fear of childhood depression.
I spent a lot of this year on tender hooks worried about how the transition to second level would effect my son and us as a family if things went badly.

I can understand your son not wanting to be torn away from his class, he's just spent the school year getting used to them and finding a place in the group which is a big challenge for kids on the spectrum. Is there some way to work with him and the sna and the teachers to use staying in the class group as leverage to get him to be more co operative and make a bit more of an effort?

I can understand the reluctance to that that as you don't want to make being placed in the Unit as a punishment.

But a greater understanding of how he his and how it effects him and how there are other kids out there who are the same and need some extra support may have him more accepting of the support and being willing to use it to be all he can be instead of shying away from it.

If your son has to drop subjects it might be a good idea to find other things which he can work on and excell at, at home or outside of school to bring his confidence up. Our kids can achieve but we often have to work harder at making opportunities for them to do so.

Lola92

OP, my brother is 12. He also was diagnosed with Aspergers and ADD around age 7/8. However he is only going into 6th class come September. He is very high functioning, in the top percentile for maths and his language skills are fast inmproving with the resource teacher. He doesn't have an SNA and will be going to a mainstream secondary school when the time comes.

As far as I am aware my parents have never sat him down and said 'you have Aspergers', but he is a twin, and therefore would be aware that his brother doesn't have an extra resource teacher, social skills group therapy, Ocupational therapist, etc. He knows that he is a bit different, but we feel no need to brand him.

In my opinion, and feel free to disagree with me, labelling a child with a syndrome does nothing for their confidence. Your son is at an age where the most important thing is to fit in with his new friends, not to appear overtly differant to his classmates. I think that he is afraid of what this autism unit signifies to his peers. Kids that age can be very cruel, and he is probably afraid of being excluded if he was seperated into this unit for a lot of the day.

Rather than dropping down to just 5 subjects it would probably be beneficial for him to stay with his class group for the core subjects aswell as RE, CSPE,SPHE, PE - as these tend to be the more social classes. Staying in the class for the subjects he does not take would be a good option if extra resource hours outside of the autism unit are not available.

Also, this might be slightly off topic so apologies. My sister (15) has dyslexia and is exempt from Irish, has extra English and general resource also. I remember her being very upset to me around your sons age. She was being taken out of class where her friends were for her resource class. She would not accept that she was dyslexic, the fact that she was being boxed off like this with the 'stupid kids' (as viewed by her peers) really distressed her. Her dyslexia, which had previously been severe in primary school, was improving a lot and she thought she was better.

She preferred to think that she needed some extra help, and accepted that well. The problem she had was she felt like she was being written off by being labelled dyslexic.

magrat

I would of the opinion that you are not doing him any favours by not letting him share the knowledge of his own diagnosis. By not telling him you are - in my opinion - making it out to be a bad thing. Something shamefull and deserving of being hidden.

If he were told he needed glasses to see would you keep this from him too? Were he diagnosed with diabeties would you keep that a secret too?

His ADD and Aspergers are simply part of what makes him. If he is ever going to learn to cope with that and learn to accept himself as who he is - then he is going to have to be lead by the example of his family accepting him including his conditions.

You need to tell him.

Moonbeam

I don't mean to sound harsh but are you in denial? and is it a case of as long as you don't tell him it won't be real?
I think you need ot tell him and get him the necessary help that he needs.

Marguerite Tonery

There are many attributes to each person other than intellectual ability or rote learning, on which the system of education at second level seems to be based. What are his other talents? Why not harness these? Some of the most talented people were not able to conform to mainstream education - I am thinking of Richard Branson at this moment. Having something does not make you abnormal, you still have a great deal to offer to the world, and much that you can achieve.
I think the earlier suggestion of getting tested again, and then have that person identify the best ways in which your son can enhance his abilities and improve on his weaknesses with a set program of how he can best achieve in school as well as in other areas of his life is the way to go. Sometimes small tools can make a huge difference on how to move forward.

The best of luck with it all.

Daisy M

Lola92 wrote: »

Also, this might be slightly off topic so apologies. My sister (15) has dyslexia and is exempt from Irish, has extra English and general resource also. I remember her being very upset to me around your sons age. She was being taken out of class where her friends were for her resource class. She would not accept that she was dyslexic, the fact that she was being boxed off like this with the 'stupid kids' (as viewed by her peers) really distressed her. Her dyslexia, which had previously been severe in primary school, was improving a lot and she thought she was better.

She preferred to think that she needed some extra help, and accepted that well. The problem she had was she felt like she was being written off by being labelled dyslexic.

Its understanable she didnt want to feel different from her friends, but they thing is she had dyslexia and had she waited in the irish class she would more than likely have been way behind her class mates (believe me it is not easy to be allowed to drop irish and if it was reccommended and approved that she do so then it was probably for the best). Also she would have benefited from the extra english classes quiet possibly she wouldnt be able to have managed her disability so well without them.
I agree with previous posters that we all need to accept ourselves for what we are, been diagnoised with a condition does not have to box someone in on the contary it can provide the tools to manage/overcome and understand the condition.

ppink

How are you managing to medicate him without him knowing what its for?

Ayla

My initial thought on this question was, well, if I was the kid, would I want to know? Would it help me understand why I'm so different to my friends, and would it help me rationalize that I'm not just stupid?

Imo, if I know what I'm fighting it's easier to cope. As with any medical condition, it's the not knowing what's wrong that is the hardest to deal with; once you have a name & can pinpoint what's exactly wrong you can target ways of overcoming it. I would imagine your son know rightly that he is somehow different, but maybe he just thinks he's dumb. Maybe if he actually learns that there is a physiological condition which he *can* live with he can overcome it better.

OP, by not telling your son you're not helping him to overcome his challenges. Yes, there will be social stigma that he'll have to deal with, but whether it happens now or later in his life it will happen. You can't protect him forever.

Lucyfur

ppink wrote: »

How are you managing to medicate him without him knowing what its for?

Sorry, where was medication mentioned?


My son is autistic. He's nearly 9 now, he was diagnosed when he was 4. He knows he's autistic, knows what autism is, understands how it effects the way his brain works, understands how it effects his social skills and in his case, understands how is effects his gross motor skills.

I've never hidden it from him. I feel happier knowing that he understands why he has some quirks and why he likes things just right and why he gets upset if there's a loud noise.

He's in mainstream school, with full resource hours and access to an SNA. His peers know he's autistic and although they don't have an in-depth understanding of it, they accept him for who he is. Of course, there are the few who don't but that's going to happen regardless of a disability.

He's in group therapy for SLT and OT, with 3 other boys with varying degrees of autism and ADHD. Through this, my son learns to except that everyone is different and he learns just how broad the autism spectrum is.

He deals with things beautifully. He asks me are jokes funny before telling them to friends. If he's thinking differently, he'll ask if others would have the same thoughts he's having about a particular something. If I could go back, I wouldn't change a thing. I've never regretted telling him.

ppink

Lucyfur wrote: »

Sorry, where was medication mentioned?

here

modmo wrote: »

I have a 13 year old son with a diagnosis of asperger's syndrom and ADD.
I feel he has a mild form of asperger's because apart from a few quirks (some he has grown out of) and a bit of immuturity for his age, he seems fine. He is very sociable and has many friends and seems to be popular at this mainstream school.
The problem is his school work which I feel would be down to the ADD(he is currently on medication for this). He is very behind. He's just finished 1st year and going into 2nd in Sept. His teacher has suggested he cuts down from 10/11 subjects for the junior cert to maybe doing 5. Which I feel is a good idea.
However, here is the problem. She has suggested that he goes into a special autisim unit they have at the school for the times when the rest of his class are doing the subjects that he has dropped. He doesnt under any circumstaces want to do this because there is a stigma attached and he doesnt want to be seen or known by his friends that he attends this unit.
The kids at the moment that seem to use the unit would have obvious special needs. Where as to look at my son, you would not think anything is wrong.
We have never told him about his diagnosis (he was diagnosed at 8) only because we feel he wouldnt handle it and have a complete meltdown.
He is aware his brain doesnt function the way ours does but is in complete denial that he needs any extra help etc. This makes him feel very down about himself.
We had a nightmare with him in the last few years of primary because he hated having a special needs assistant and having to leave class twice a day for resource. So far he really being enjoying secondary school (well the social side of it). We wouldnt force him to avail of the unit because we feel this could put him off going to school altogether.
The only other option is for him to sit in the class and do homework while the rest of the class is doing their subjects. He would rather this option.
The teacher feels its time for us to tell him about his diagnosis, so he will eventually face up to it and start excepting help.
However, I feel that if we were to tell him (1st he'd be in denial), then he may get very depressed. He associates special needs with people who have a physical disability or have down sysdrome etc.
Does he have to know he has a label attached. I just sure what to do next about the way forward to helping him with his education. Any advice?

LegacyUser

Regular poster here, but going anonymous for this.

I always knew from an early age that I was different. I hated it, I wished I could be transplanted into somebody else's body so I could have their brain - even for a day. This wasn't helped by having teachers that slapped me or roared at me when I couldn't think of answers or didn't hear things properly, or laughing at me when i made inappropriate movements or remarks - encouraging schoolchildren to bully me. I always got told I was stupid and to use my brain, even though I got high grades! I spent my evening cringing or crying at things I did or said, and at one stage I wanted to commit suicide.

As I got older it got a bit easier. I work in a professional job, I'm good at it, I believe I'm very good at it . On Boards I make opinions, but while other posters can continue to argue their points I get stuck and give up quickly. I stick to the forums where users are nice to each other!

Socially I tend to be a little reclusive. I find I can be a target for teasing because I can come across as odd or silly (I don't want to be!). However, I only hang out with genuine people (which I believe is my talent at seeking out!) so I can laugh along with them at the silly things I do - then tease them back!

I was devastated when my daughter was diagnosed with Aspergers 2 years ago. It was finally an explanation for what I had all my life! I know what she has ahead of her. Like your son, OP, she goes to a Resource teacher and has an SNA. She feels the odd one out in her class because of this. She is supervised in the playground each day and is encouraged to play with others and as a result she has improved socially.

I'm a bit tough on her, she does quirky things and I completely discourage her as I know she would be teased by other children if they saw her.

She went to a social skills workshop, and I must admit I was not pleased when I saw the other children were very obviously special needs, and she didn't benefit one bit from it (please do not say I must have made negative remarks about the workshop to her because I never did!). She remarked to me that the other children were "silly" which I corrected her about. Which is why OP I agree with you that your son would not benefit from being in the autistic unit!

Should you tell your son about his diagnosis? Well I knew I was different, it was horrible when the outside world screamed at me to be like everybody else yet I knew I couldn't be no matter how hard I tried. It would have been nice to have been given a leaflet and be told "You are not abnormal, your brain just functions a different way, doesn't mean you're stupid - and there are others like you".

My opinion? He should be told about his diagnosis, he won't feel so alone in the world if he knows what causes his differences. But he should be allowed to stay in his mainstream classroom, with help if needed.

Ayla

aspergers adult wrote: »

Should you tell your son about his diagnosis? Well I knew I was different, it was horrible when the outside world screamed at me to be like everybody else yet I knew I couldn't be no matter how hard I tried. It would have been nice to have been given a leaflet and be told "You are not abnormal, your brain just functions a different way, doesn't mean you're stupid - and there are others like you".

+100! This is what I was trying (but failing) to say. Thank you.

Morag

I had family expecting that my son would just 'grow out of it', some even think he has, but he hasn't he's learned to adapt, he's learned what some of this triggers are, what to do when he's over loaded or stressed out or frustrated. There are plans and ways we have learned to manage and support him and he is learning to manage himself, but he won't grow out of it and will have difficulties and challenges due to ASD for the rest of his life but hopefully he will tackle them with grace and a positive outlook.

Autism is a load word, we used the term non neurotypical with our boy before mentioning autism or ASD.

yoda2001

I want to comment on the proposal to drop subjects for Junior Cert.

If your son drops to 5 subjects this will leave him with a lot of free time and a very loose school day. This will prevail until he does his junior cert in 2 years time. Given his difficulties he may not be able to cope with this. I would look at dropping maybe one subject with which he is having huge difficulty.

It may also limit his subject options for Leaving Cert.

The unit option would almost definitely be devastating for him. If he is coping socially at present, then he is learning from his peers and shaping his social skills for the future.

Make sure all teachers are aware of the add diagnosis. They can seat him at the front where they can keep an eye on him and call his attention if he is drifting off.

There are some 'professionals' out there who would diagnose my (perfect...) self and any other adult with a syndrome. You have to be careful of labels.

Hope things work out for him. And all of you.

Cat Melodeon

I also agree with the posters who have advised to explain to him about his diagnosis but be careful about withdrawing him from too many subjects for the time being. 5 subjects for Junior Cert seems very little to me, particularly if your son is just about coping with the current workload. Putting him in a specialist unit at this stage could be devastating to his self-confidence and could certainly cause his peers to treat him differently.

I would be concerned as to why his teacher is recommending such drastic changes. Have his subject teachers expressed concern at his progress in their classes? Are they suggesting that he be removed for the social non-exam classes like PE or just some of the more demanding exam subjects? Resources have been severely affected at most schools this year - our local secondary has lost 4 of it's 6 SNAs - and resource hours are now precious, putting severe pressure on the mainstream subject teachers to incorporate everybody into the class where they might have had assistance before. Make sure that it is your son's needs that are being put first, not what is more convenient for the teachers. I'm not slagging teachers off by any means, they are doing what they can to deal with the cuts, but cuts have to be made and parents have to fight tooth and nail to keep what supports their children get. Those who don't fight may be the ones who lose most.

I would be very reluctant to have him so obviously labelled and excluded at this stage - second year is a notoriously difficult time at second level where any difference can be pounced on by peers. It's like the novelty of second-level has worn off and power plays begin that will determine the cliques for the next 4/5 years. Not a good time to be physically removed from the group.

I'm not an expert on the matter by any means and can only speak on the basis of 5 years of working in resource and as an SNA, but on the basis of what I've seen, those children who are doing well socially but less well academically do best when they remain with the mainstream group. Once they are separated from the group and labelled as special, friends seem to drift away and their social circle becomes limited. For those kids who do not do well socially, specialist settings seem to help self-esteem and expand their confidence.

In your case, I would want to speak with each of his teachers and find out which subjects he is coping with (even if he is simply passing rather than excelling) and keep his schooling as 'normal' as possible. But also let your son know about his diagnosis and why some changes may be necessary - needing extra help is nothing to be ashamed of. I always point out that most students who get 600 points in the LC have been to grinds or attended revision courses, so why shouldn't ordinary students get a bit of help too?

SerialComplaint

modmo wrote: »

However, here is the problem. She has suggested that he goes into a special autisim unit they have at the school for the times when the rest of his class are doing the subjects that he has dropped.

The EPSEN Act clearly states that children should be in mainstream schools, unless they are going to disrupt their classmates. I don't think it is down to any individual teacher to come up with a suggestion like this. It would have to be an educational psychologist

implausible

modmo wrote: »

We have never told him about his diagnosis (he was diagnosed at 8) only because we feel he wouldnt handle it and have a complete meltdown.
<snip>
He is aware his brain doesnt function the way ours does but is in complete denial that he needs any extra help etc. This makes him feel very down about himself.

The only other option is for him to sit in the class and do homework while the rest of the class is doing their subjects. He would rather this option.

It sounds to me like he has an idea of his diagnosis. You just need to build on this idea that his brain works differently and because of this, he needs extra help

The last comment really worries me as a teacher. While sitting in a class doing homework while others are doing a subject sounds grand, I would have serious reservations about this approach for a child with ADD. If he's down to 5 subjects, that's a lot of 'homework' classes for him and medicated or not, ADD kids don't cope well with boredom. There's only so much homework he can do! It could result in him getting in trouble regularly, which will be no good for his self-esteem either. Are there no resource hours available at this time?

I can see the logic of reducing to 5 subjects, but there is a big difference between not being able to cope with 12+ and having a lot of free time with 5.

Cat Melodeon wrote: »

Resources have been severely affected at most schools this year - our local secondary has lost 4 of it's 6 SNAs - and resource hours are now precious, putting severe pressure on the mainstream subject teachers to incorporate everybody into the class where they might have had assistance before.

I'd say you've hit the nail on the head here. SNAs are probably in the classes of most need and it's easier for the school to send him to the unit for a while. We are getting one of these units and it's envisaged that mainstream students with ASD will only use it at certain times or when they need a "time out"

You have to push this with the school OP. Give your son more info about his diagnosis. You are entitled to resources for him; use them

flutterflye

My son is 8 and I told him last year.

In my opinion you should definitely tell him.
I think it is vital actually.

It is your decision to make.
Let the diagnosis settle with you a bit first though (I get the impression that you yourself may not be comfortable with it?)

The label is necessary for education purposes, along with actually understanding the how's and why's.

Once dealt with gently, honestly, and factually, I can't see where the problem would lie tbh.

You seem to have made it a bigger deal in your head than it has to be.

Also, you don't have to tell him everything in one go, infact I would advise against it.

The most important thing is how it is handled.
Do not act as if it is a big deal.
Just a normal conversation when the moment is right.

And sooner rather than later.

miss no stars

If he's doing ok socially and you suspect that it's his ADD at the root of his current problems in school, why not tell him about the ADD first? Sounds like the school are just trying to take the easy route out rather than actually putting the time into him.

I think it might be right to tell him he has Aspergers, though. I've spent the last two summers working with kids his age, most of whom have AS or NLD. Most also have AD(H)D. Many of them were able to talk quite openly about their diagnosis and from what I've observed, this is a good thing as it makes it very easy to help them - if they know why they're getting frustrated it's easier to show them how to cope. (If that makes any sense).

Letting him know he has a label attached could be an excellent thing if handled correctly - it means he's not abonormal, a freak or something unheard of -there are many people just like him.

Regarding the subjects thing - he has asperger's syndrome and he just transitioned from primary to secondary school. That's a big leap for any child, without adding AS into the equation! Next year he'll already be familiar with the school, he might actually do a lot better with his subjects.

Here's where I think it's important to tell him about his diagnosis - you can let him know why the autism unit has been suggested and why the school is suggesting he only do 5 subjects. Then you can acually get him properly involved in the decision - he may be happy to drop to say, 8 subjects and put a bit of work into 3 over the summer to get up to scratch and that way he could easily stay with his friends. 5 subjects is VERY few, though. He WILL get bored and it raises he problem of what he can do at the leaving cert. If you tell him now he has the whole summer to digest the information, go online and get as much information as he wants.

He might just want to prove that teacher wrong

gsxr1

My son at 7 year old is fully aware of his ADHD. We use the fact that he does know as a way to explain why he does not always fit in. And how he should endeavor to rise above his impulsiveness

Yet I would not change any bit of him . His ADHD is as much a part of him as his arms and legs. We teach him that his condition is of great benefit to him(as it is). He is by far the most intelligent in his class with 95-100% in any test scores. We use this fact to make him proud of himself and the way he is. It has been working well for the last 2 years.

Maybe if you list all the positives and play down any of his shortcomings he might accept it a little better.

SparkyTech

Hi OP,

I was diagnosed with Aspergers Syndrome (albeit on a lower end of the autistic spectrum) at 17 following intense CBT therapy for Depression.

It was the most empowering moment in my life to finally have a name to put on the quirks I always had but couldn't quite articulate. For the most part I fitted in in childhood, but I was always a bit of a 'oddball' for my social faux pas and high functioning academic ability.

I will always have AS, but the thing is, There's absoulutly nothing wrong in being different. Over the years through the support of my parents and my determination to not let a label define me, I have learned to adapt. I can recognize most social q's I would have had difficulty picking up on in childhood, and through therapy have found the skills to manage my anxiety attacks and develop a more positive, less black and white outlook on life.

Your son deserves to know his own Diagnosis. There is a support group in Trinity College for those with AS, and I have read up on a few books about the condition, I can message the links on to anyone who asks for them .

Aspergers went from becoming a dominating and overwhelming concept to a manageable and small facet of my personality. And im proud of who I am and what Ive achieved having reached 20 . I wish you and your son the best.

Maga

No no no no.

At least PLEASE do not give him a label, with a name, with symptoms that he and all his friends will look up on wikipedia or anywhere else and put him in a terrible narrow box.

Autism spectrum diseases are still a very grey area, not much is known about it and it's hard to say one child will be the same as another just because they have the same syndrome.

I think there are 2 points here.

1) He is a teenager, has a social life and is forming the basis of his personality

Quoting:
"In my opinion, and feel free to disagree with me, labelling a child with a syndrome does nothing for their confidence. Your son is at an age where the most important thing is to fit in with his new friends, not to appear overtly differant to his classmates. I think that he is afraid of what this autism unit signifies to his peers. Kids that age can be very cruel, and he is probably afraid of being excluded if he was seperated into this unit for a lot of the day."

I couldn't possibly agree more!! And as you said, he is popular and has friends. 13 is such a tricky age, in a way this is when our confidence is built. So by no means I would tell him such a heavy label - which doesn't even predicts what his development will be like! Doctors know a lot less than they appear to know.

What will happen is that he will tell his friends, who will tell others, who will tell their parents, and he will be excluded or looked upon as "retarded" - and by no means I'm trying to be horrible here! But I know someone who went through a very similar process and that how it ended up, and the child, obviously, was terribly hurt.

I'm just saying people can be utterly ignorant, judgemental and stupid, and just say things like this to him - which would be really hurtful.

Also, as I said, not a whole lot is known about the prognosis and development in these conditions. If you label him already, he might end up achieving less than he was actually capable, because, by wishing him well, teachers and other people around might avoid him to face challenges and give him "the easy way out" in things just because of his condition. But he needs to be intelectually and socially challenged, and as much as possible, treated like other kids, to develop a strong self-esteem and also know himself what his limits are - again, don't trust the doctors 100% on that!

2) His academic achievements

I liked what another poster said, about saying to him only, "your brain works in a different way".

And is true, and it's not necessarily a bad thing. 20 years ago kids that were different in classroom got shouted at, reprimended, etc. Now a days there is a trend towards different types of intelligence, so I don't think he will suffer, especially if the teachers are aware. If you see him struggling academically, give him enough information about his limitations just so he doesn't get frustrated or feels too different, just so he understands he might need to concentrate in a different way or organise his learning in a different way.

But please don't give him a label when so many people out there are ignorant and can be cruel to him, especially at such an early age. Let him figure out a bit better first who he is as a person - and who he is as a person has nothing to do with his diagnosis.

As he gets older, more confident, stronger, with good friends around, etc. then you can consider telling him more, little by little.

That's just my personal opinion, but I think there is a huge amout of prejudice against anything different out there, and at his age this escalates so much it could be a disaster to his self-esteem.

flutterflye

@ Previous poster -

If you have a problem controlling your alcohol use, you have an alcohol addiction.
If you have acute problems around literacy and processing, you have dyslexia.
If you have a prolonged low mood and disinterest in life, you have depression.
If you problems with social skills and pragmatic language, you have autism.
If you have trouble around attention and processing, you have add.
If you have a bacterial infection in your chest, you have a chest infection.
If you keep your money in a bank, you have a bank account.
If you have an area of land to the rear of your house, you have a back garden.

'Labels' are only a problem if you view them as bad.

What they actually are - A recognised term used to describe something.

This term is necessary for communication.
- 'Hi you, the person I know from that place that we went when we were younger for 12 years, I was just wondering if you could pass me that small white thing that has one hole that is for shaking onto this thing infront of me that I eat'

You do not have to go telling the world and its mother about the diagnosis.
But it is vital for that person (in this case, the op's son) with the diagnosis to be told.

Otherwise it will lead to a lifetime of low self esteem due an inability to be like everyone else, without knowing why.
Explaining that his brain works differently will not be enough at his age.
He will want more information.

Best option all round is to just tell him, without making it into something its not - a big deal.

Btw. I have add, and only found out in adulthood.

flutterflye

Maga wrote: »

Autism spectrum diseases

Oh dear sweet jesus!!!!

I just noticed the above statement in your post!!!!

"diseases"! - Have you any idea what you are even talking about?

Maga

Hi Flutterflye and all, yes, I know exactly what I am talking about. My sincere apologies, I meant disorders, not diseases, and that is because English is not my first language - which doesn't change what I know about the actual disorder, and doesn't mean I was trying to be rude about it.

If you want, you can look up yourself several recent scientific papers where, for example, they explain that not only the autism classification is a spectrum of several sub-disorders, but the same view is being more and more applied to other disorders. For example, several researchers now agree that depression should be classified as a spectrum too, since it can overlap symptoms (and causes) with other "disorders" such as bipolar, ADD and schizophrenia, for example. It also has a high co-morbidity with alcohol addiction. So labels are not that straightforward when we are talking about neurology/psychiatry, which is an area much less studied and understood than pneumology or er... architecture? - if we go by your post.

It is a much more complex concept than what I am writing here, and feel free to research about it on the net, but what I am saying is that although the DSM-IV gives a lot of labels based on a couple of symptoms that you either have or you don't, there is an on-going discussion in the clinical and research scene about the actual meaning and value of a diagnosis.

That is why I would be tactful in my approach with such a young boy.

A diagnosis is to a certain extent a label, yes, and what is even more important, the prognosis - or if you wish, how this person will develop and cope and deal with each of their "symptoms", is not mathematically predictable by the diagnosis. It might even be that by the time he reaches his 20s, he won't even be classified anymore as Aspergers.

Using a more extreme example, until a couple of decades ago, Down syndrome patients were considered severely limited in their mental abilities. It has been shown now that if they receive enough estimulation, if they grow up in a loving social environment, they can function extremely well, and several of them have been going to universities and working and leading a 99% normal life.

Up to here, I'm talking about scientific theories and discussions that you can find in the internet or any other recent journal you wish to check.

Now my personal opinion is: I don't feel comfortable with labels, especially when we are talking about mental disorders/conditions or whatever you want to call it, being applied to a teenager whose brain and social and intellectual abilities are still in development and who has a huge potential for overcoming difficulties. And the reason is, although the doctors seem to know a lot, there is still a lot to be discovered.

Considering the brain is plastic and each person is an individual, I think in each case we must be careful between not frustrating the person, by denying them the info, so they don't get frustrated if they don't do as well in school as others and understand that is not their fault, but also to not handcap them, by antecipating a difficulty he/she might never even develop, or might develop in a mild way, or might develop and overcome it.

Besides, as much as I think it is hateful and I wish it wasn't like that, there IS a social stigma to certain mental conditions. ADD is very well accepted and I don't think it is a problem to discuss that with him - I think people are quite aware of what ADD is and for some reason it doesn't carry much of a stigma. So as for ADD, yes, I would discuss with him.

The Asperger's is a bit more complex. If the world was full of kind and educated people, I would definitely agree too that he shoud know about it. If he wasn't getting along with his friends, I would also discuss it with him.
But he is only 13 and so far didn't seem to have problems with social interaction, for example. And for us adults it doesn't seem like it, but from 13 to 15 there is a huge change on maturity and struggle for acceptance in teens.

Unfortunately the world is not full of kind and educated people, and I have seen a pre-teen suffering a lot of discrimination because the parents of his friends learned about a harmless diagnosis - and he was called names I wouldn't like my kid to be called, and suffered silent discrimination that I think was quite horrible to him. That is where I was coming from in my previous post.

So please feel free to discuss any point you wish. As I said, there is a strong scientific trend in treating mental conditions/disorders as a spectrum now a days, and avoiding narrowing people down to a box.

Everything else is my personal opinion, and therefore I can be right or wrong.

All the best

flutterflye

Maga wrote: »

Hi Flutterflye and all, yes, I know exactly what I am talking about. My sincere apologies, I meant disorders, not diseases, and that is because English is not my first language

Ah okay.

English isn't your first language.

While I do see what you are saying, I disagree with pretty much all of it!

As you say though, there's no right or wrong, just personal opinion.

Maga

Flutterflye, we are all entitled to our personal opinion, and you are more than welcome to disagree with mine.

This is why I made a clear division in my post between what was Scientific Theory and what was my Opinion. And the reason why I’m posting again is not because I’m trying to have the last word in a discussion in boards.ie.

The reason why I insist in highlighting this current trend [FACT] of approaching mental disorders with more of an open mind about individual symptoms and personal capacities and strategies, instead of following the DSM-IV blindly, is because I believe [OPINION] it is extremely relevant to the OP and to many other people who might be in the same situation.

I agree it is a relief to understand that a life time struggle has a diagnosis, that it’s not one’s fault, and is invaluable in looking for the right treatment and coping techniques for it. But I have also seen people who ended up “handicapped” by believing too much in a diagnosis and and its stigma and limitations.

And I’m afraid that this would happen to him, if he is given a label (he already hates the idea of his brain “working different”), if he is taken to a unit where kids have much more severe/different symptoms and carries a stigma, and if he drops from 11 subjects to 5 (!!!).

I have to agree with others who mentioned it might be just an easy way out for the school, suggesting such a thing. The teachers want him to “deal with it and accept help”. But the “help” they are offering would take him away from his class, away from his peers and social environment – a disaster when you are 13! - and would drastically increase his boredom, which is no good for ADD either.

Are there any alternatives to stimulate him more academically, OP, so he wouldn’t miss out on the social aspect? And as suggested, maybe just drop a couple of subjects, but still allowing him to go for the Cert, if things go well? Have you considered Cognitive Therapy, maybe – even outside the school environment, so he doesn’t feel embarrassed in front of his friends?

Wishing you the best

Melanoma

modmo wrote: »

I have a 13 year old son with a diagnosis of asperger's syndrom and ADD.
I feel he has a mild form of asperger's because apart from a few quirks (some he has grown out of) and a bit of immuturity for his age, he seems fine. He is very sociable and has many friends and seems to be popular at this mainstream school.
The problem is his school work which I feel would be down to the ADD(he is currently on medication for this). He is very behind. He's just finished 1st year and going into 2nd in Sept. His teacher has suggested he cuts down from 10/11 subjects for the junior cert to maybe doing 5. Which I feel is a good idea.
However, here is the problem. She has suggested that he goes into a special autisim unit they have at the school for the times when the rest of his class are doing the subjects that he has dropped. He doesnt under any circumstaces want to do this because there is a stigma attached and he doesnt want to be seen or known by his friends that he attends this unit.
The kids at the moment that seem to use the unit would have obvious special needs. Where as to look at my son, you would not think anything is wrong.
We have never told him about his diagnosis (he was diagnosed at 8) only because we feel he wouldnt handle it and have a complete meltdown.
He is aware his brain doesnt function the way ours does but is in complete denial that he needs any extra help etc. This makes him feel very down about himself.
We had a nightmare with him in the last few years of primary because he hated having a special needs assistant and having to leave class twice a day for resource. So far he really being enjoying secondary school (well the social side of it). We wouldnt force him to avail of the unit because we feel this could put him off going to school altogether.
The only other option is for him to sit in the class and do homework while the rest of the class is doing their subjects. He would rather this option.
The teacher feels its time for us to tell him about his diagnosis, so he will eventually face up to it and start excepting help.
However, I feel that if we were to tell him (1st he'd be in denial), then he may get very depressed. He associates special needs with people who have a physical disability or have down sysdrome etc.
Does he have to know he has a label attached. I just sure what to do next about the way forward to helping him with his education. Any advice?

Hi I am a teacher and I think kids need to know up front what they are facing. They are more concerned with being accepted for who they are. If you can see good things in your child and they know this and also that you accept your child for what they are then they will at least not have to worry about you as well as everything else. Every kid has something that makes them unique and although Asperger's will slow down a kid in some ways, they will be maybe better in others and if you pick up on that then they will be grateful for that. That might not be easy for you to do, so you might want to ask others for advice on this and also maybe some professional help on how to. It can be hard for parents and there can be a lot of denial and that forms habits that take a long time to change. Remember though that no matter how hard you try kids need direction and discipline and to stay as a parent be focused and try not to be hard on yourself. Well done on looking for advice I hope some of what you find in the responses helps you.

Demonique

Maga wrote: »

Hi Flutterflye and all, yes, I know exactly what I am talking about. My sincere apologies, I meant disorders, not diseases, and that is because English is not my first language - which doesn't change what I know about the actual disorder, and doesn't mean I was trying to be rude about it.

If you want, you can look up yourself several recent scientific papers where, for example, they explain that not only the autism classification is a spectrum of several sub-disorders, but the same view is being more and more applied to other disorders. For example, several researchers now agree that depression should be classified as a spectrum too, since it can overlap symptoms (and causes) with other "disorders" such as bipolar, ADD and schizophrenia, for example. It also has a high co-morbidity with alcohol addiction. So labels are not that straightforward when we are talking about neurology/psychiatry, which is an area much less studied and understood than pneumology or er... architecture? - if we go by your post.

It is a much more complex concept than what I am writing here, and feel free to research about it on the net, but what I am saying is that although the DSM-IV gives a lot of labels based on a couple of symptoms that you either have or you don't, there is an on-going discussion in the clinical and research scene about the actual meaning and value of a diagnosis.

That is why I would be tactful in my approach with such a young boy.

A diagnosis is to a certain extent a label, yes, and what is even more important, the prognosis - or if you wish, how this person will develop and cope and deal with each of their "symptoms", is not mathematically predictable by the diagnosis. It might even be that by the time he reaches his 20s, he won't even be classified anymore as Aspergers.

Using a more extreme example, until a couple of decades ago, Down syndrome patients were considered severely limited in their mental abilities. It has been shown now that if they receive enough estimulation, if they grow up in a loving social environment, they can function extremely well, and several of them have been going to universities and working and leading a 99% normal life.

Up to here, I'm talking about scientific theories and discussions that you can find in the internet or any other recent journal you wish to check.

Now my personal opinion is: I don't feel comfortable with labels, especially when we are talking about mental disorders/conditions or whatever you want to call it, being applied to a teenager whose brain and social and intellectual abilities are still in development and who has a huge potential for overcoming difficulties. And the reason is, although the doctors seem to know a lot, there is still a lot to be discovered.

Considering the brain is plastic and each person is an individual, I think in each case we must be careful between not frustrating the person, by denying them the info, so they don't get frustrated if they don't do as well in school as others and understand that is not their fault, but also to not handcap them, by antecipating a difficulty he/she might never even develop, or might develop in a mild way, or might develop and overcome it.

Besides, as much as I think it is hateful and I wish it wasn't like that, there IS a social stigma to certain mental conditions. ADD is very well accepted and I don't think it is a problem to discuss that with him - I think people are quite aware of what ADD is and for some reason it doesn't carry much of a stigma. So as for ADD, yes, I would discuss with him.

The Asperger's is a bit more complex. If the world was full of kind and educated people, I would definitely agree too that he shoud know about it. If he wasn't getting along with his friends, I would also discuss it with him.
But he is only 13 and so far didn't seem to have problems with social interaction, for example. And for us adults it doesn't seem like it, but from 13 to 15 there is a huge change on maturity and struggle for acceptance in teens.

Unfortunately the world is not full of kind and educated people, and I have seen a pre-teen suffering a lot of discrimination because the parents of his friends learned about a harmless diagnosis - and he was called names I wouldn't like my kid to be called, and suffered silent discrimination that I think was quite horrible to him. That is where I was coming from in my previous post.

So please feel free to discuss any point you wish. As I said, there is a strong scientific trend in treating mental conditions/disorders as a spectrum now a days, and avoiding narrowing people down to a box.

Everything else is my personal opinion, and therefore I can be right or wrong.

All the best

Sounds like you don't have any personal experience with autism or Asperger's Syndrome...

As a person who's actually diagnosed as AS I think you are spouting a load of nonsense




OP - you should definately tell your son. I was diagnosed at 15, but my parent's didn't tell me and I didn't find out until I was diagnosed by another professional at age 25. When my parents told me that I'd be diagnosed at 15 it damaged my relationship with them and as they didn't bother seeking out help for me it ended up affecting my life adversely. I have never had a long-term job and will likely be on disability benefit for the rest of my life

Oral Slang

I think you should definitely tell him. My nephew has Aspergers & OCD and is the same age & is also going into 2nd year in September. He got diagnosed about 5 years ago, after his parents pushing for answers for years & has known he has it pretty much from the beginning.

To look at him or speak to him, you wouldn't know anything was wrong with him at all, but he sometimes gets fixated on things or doesn't process information in the same way as others - jokes etc. He's been attending the Lucina Clinic for the past few years & I think it's done him the world of good. He's great academically & I hope nobody suggests he drops subjects, or leaves behind his mainstream classmates.

A lot of kids with only mild symptoms will grow up to be perfectly normal (if quirky) adults & so the junior & leaving cert will be required, the same as it is for anyone else in order to get a decent job. So unless they are really struggling with a subject, I'd be reluctant for them to drop classes.