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Should I tell my child about her label?

(36 Posts)
thegovernor Fri 01-Jun-12 21:29:16

My DD is 9.5 yrs old and has recently be diagnosed with non verbal learning disorder which is very similar to Aspergers.

Her social relationships are causing her greatest distress at the moment. She doesn't have any friends, she feels different from her peers and knows that none of them are interested in her. She is extremely bright and is acutely aware that she is doing something wrong socially but is unaware of what she needs to do to improve her situation. Her basic social skills are absolutely fine but she just can't master the nuances of social communication and these are incredibly difficult to teach anyway.

One of the reasons I sought a label in the first place was because I believed that if she understood her difficulties and discovered there was a reason for them then she wouldn't give herself such a hard time and she'd hopefully stop thinking of herself as unlikeable. However, now she has a label I'm not sure it would be helpful to share it with her yet and I suspect it could make it worse. I just don't know what to do...

PavlovtheCat Fri 01-Jun-12 21:35:01

I know nothing about this, but a thought on it all, and just that, not advice.

Maybe you could not let her know just yet, until you get to grips with what it means and how it affects her social interaction. Could you learn how to support her interaction and increase her confidence yourself by encouraging those interactions which are supportive of her learning, and avoiding those things that will increase anxieties, as you learn. And then, once she finds herself learning what she can and cannot do, how to work in situations, maybe the label becomes less important, but learning how she needs to behave/work/skills to learn. And if she needs the label, in time, she will understand its ok, as she is managing it well by that stage.

Not sure if that makes sense, as like I say I have no knowledge. Good luck by the way, it sounds tough and she sounds like a very switched on girl, which must be all the harder when she knows things are not how she would like them with her social skills.

thegovernor Fri 01-Jun-12 21:43:55

Thanks for your message.

We do work on social skills at home. I take every opportunity to point out alternatives to how she may or may not choose to respond, I try to encourage empathy so she can attempt to see things from someone else’s point of view, we play inference and non verbal communication games. It really is an uphill struggle and sometimes I feel I'm getting nowhere.

I agree that until I'm sure sharing it would be positive for DD, I'd rather keep it to myself. I'm scared to do anything incase it makes things worse for her.

tabulahrasa Fri 01-Jun-12 21:55:10

Telling my DS that he has Asperger's made it much easier for him, knowing that his social problems weren't because he was inherently unlikeable but because he's wired a bit differently boosted his self esteem loads - not instantly, but it's definitely made a difference as he's got older.

oldgreyknickertest Fri 01-Jun-12 22:02:44

Telling Ds that he is dyslexic was transformational. He no longer thought it was his fault, although he accepts he has to work harder than others.

thegovernor Fri 01-Jun-12 22:03:18

How old was your son and how much did you tell him? The AS websites are much more positive than the NvLD websites despite the conditions overlapping and being so similar.

tabulahrasa Fri 01-Jun-12 22:33:17

My DS was about 10 when we told him...but he wasn't diagnosed until he was 13, so it had to be - the Dr thinks you might have etc. etc. which made it trickier.

We knew from age 7 that he would eventually be diagnosed with something, but they kept reassessing to decide exactly what to diagnose him with, that was why he was so old when we told him, I was trying to wait for a firm diagnosis. Eventually though it got to the point that he was so unhappy with himself that I felt I had to tell him something.

I told him that we and the Dr thought he has AS, told him that it meant his brain was wired a bit differently so that was why he was struggling to learn things that other children just know, why his handwriting was so bad - that he was normal, for someone with AS and left it to sink in a bit.

I then got him everything I could by children with AS and took him to groups for children with similar diagnoses (is that the plural? Lol).

He's now 16 and much much happier in his own skin, in fact he was busy telling me the other day that the world would be a much better place if everyone was autistic, quieter, more logical and apparently we'd have perfected cloning and space travel hmm lol.

I don't know what there is out there information wise for NvLD, but could you introduce her diagnosis to her, then give her AS stuff and tell her they're similar...DS knows about autism, AS, ADHD, how they overlap and when reading things about AS knows that some of the things described don't apply to him as no two people are affected quite the same way anyway - if you're struggling to find suitable specific things it might be an idea.

thegovernor Sat 02-Jun-12 07:58:09

Thanks - that's a really good idea.

I've only come across one book written by an AS teeneage - luke who is 13? I cant remember he name of the book now. Can you recommend any other books written by young aspies? She's an avid reader and I think it would really resonate reading something she can reallyrelate to.

tabulahrasa Sat 02-Jun-12 09:29:20

There's one called, asperger's, the universe and everything by a 10 or 12 year old boy.

There's also things like this online, but I no longer have lots bookmarked.

We watched the temple grandin film a while ago, that was good, it ended up being paused every five minutes while we talked about how she has autism rather than AS and what things were similar and what was different - and of course it's really got quite a positive message, which is great. I didn't watch it to have a massive discussion, it just kind of turned into that, lol.

There's also this set of fictional books for children, which are quite good

It's hard when it's a diagnosis with less resources, but my DS has been quite interested in things where there are similar issues even if it's not what he has - I've always tried to go for the, it's not normal and abnormal, just people have lots of things that make them different approach.

oldgreyknickertest Sat 02-Jun-12 10:57:40

We knew there was a problem from reception but schools told us he was stupid or idle. He got a dx at 11 and it was the ed psych who told him, in the most natural and down to earth way, ie you have prob been wondering why x and y are so easy for everyone else and not for you, well it's because your brain is wired differently. You are just as bright as anyone else, your graphs prove it, but you are going to have to work harder and learn to do things in a different way, probably all your life. But on the plus side, there are lots of famous people who have managed to achieve things who have the same condition.

On the aspie side, a v good children's book is the London eye mystery by Siobhan dowd. It's a really cliff edge book, happy ending, we all enjoyed, aspie hero. I think any child would like it. We did it as a bed time story and discussed the concepts that came out as we went along.

thegovernor Sat 02-Jun-12 12:29:45

Ive just been on amazon and spent a fortune on a whole bookshelf of books - thanks. I think i'll maybe introduce the subject through reading and when she relates to the characters / authors we can move on to discuss how she feels and her label.

I'm happy to get AS books. My personal view is that DD has mild aspergers but that girls present in a different way to boys and the ADOS test is geared towards the ways boys present. The NLD label enables her access to the same therapies and help on the NHS but she doesn't have to meet such a specific diagnostic criteria.

NLD books are just so depressing and there are no famously bright NLD people mentioned anywhere despite the fact that 80% of people with AS are NLDs. Although the hospital has said that the long term prognosis is slightly better for NLD kids than ASD kids you would never believe that reading the literature on it.

I'm looking forward to them arriving now!

tabulahrasa Sat 02-Jun-12 12:49:45

I know a few people who introduced it gradually and let their DC connect the dots themselves - I did it the way I did purely because we reached a sort of crisis point, it was more damage limitation than anything else.

Jobob66 Sat 02-Jun-12 22:55:07

Hi, my D'S has Aspergers and was diagnosed age 6. When he was your daughters age, I read Curious Incident of the Dog..,.. and cried for about three days. He noticed and I read part of the book to him and then explained about Aspergers. I explained about degrees af autism, about the spectrum being a ladder, and it really helped him.

One thing I also have always emphasised is that no label excuses anti social behaviour. If he's violent or unpleasant to othersor aggressive, it might be caused by Aspergers, but it's still harmful to others and needs to stop.

He's 18 now and just one of the loveliest people on the planet. Life is still a struggle, but he understands why. Hope that helps

moosemama Sat 02-Jun-12 23:47:05

Ds1 is 10 and has AS.

I was worried about telling him about his diagnosis, mainly because knowing that his emotional development was a couple of years behind his peers, I felt he might not really understand and would worry about it. Then a relative mentioned it in front of him and we had no choice. He was 9.3 ish at the time and was diagnosed about 6/7 months prior (when he was still 8).

As others have said, it has been a huge relief for him to finally understand why he is different and why he struggles with things his peers find easy. We are now very open about ASD and he regularly asks questions like 'Mum do I do X because I have ASD?' or 'Do I find X difficult because I have ASD?'. It's definitely been a positive thing for him and us. These days he actually seems to celebrate his difference and talks a lot about how being different is a good thing and something to be proud of.

Ds's diagnosis was almost NLD right up until the last minute. It was the ADOS that made them finally decide to go for the AS diagnosis. It actually states on his diagnosis report that his non-verbal skills are a significant weakness for him and they recommend that adults and educators who have contact with him should read books about NLD as well as ASD to gain insight and develop appropriate strategies to support him.

I would agree that using positive AS role models and literature would be a good idea, just explaining that NLD is slightly different, but with most of the same strengths etc. We used:

All Cats Have Asperger's, which is very popular with parents explaining AS to their children.

Can I tell you about Asperger's Syndrome?

I am Utterly Unique.

I think we have a few more as well, but would need to check ds's book shelves and daren't go in or he'll wake up and that will be it for the night! smile

moosemama Sat 02-Jun-12 23:49:40

Just remembered. The other one ds has is Asperger's the Universe and Everything. Iirc that's the one he likes the best - other than the Cat's one! grin

saffronwblue Sat 02-Jun-12 23:55:19

My DD 10 has just been diagnosed with Aspergers and I have not yet told her. I am still processing it and feel quite emotional about it so can see I need time as to how to pitch it. My DD is so desperate to fit in and be like others that I fear she will be devastated at getting a label.
The school and psychologist have suggested that she be told before she goes to senior school. DH and I are going to spend much more time getting our heads around it before we raise it with her.
She sounds very like your DD - bright, loving, intense and so often just gets it a bit wrong!

thegovernor Sun 03-Jun-12 21:54:51

Thanks for sharing your experiences. It's made me realise that maybe I'm the one not ready to accept this rather than DD. When I tell her it will be so final and I keep on thinking I don't want to say anything in case the diagnosis is wrong. However, I've suspected she had AS since he was 6 so I know It's not wrong.

It's very enouraging to hear that everyone found telling their DC a positive experience. I hope it will be positive for me too.

Saffronblue - you're right your DD does sound similar to mine. I totally agree that it is a very emotional time. I hope your experience of telling her is positive too when you decide its the right time.

I have a nine year old and have not told her, it doesn't feel right to at the moment.

Pooka Sun 03-Jun-12 22:07:07

Ds1 is 6 and has recently had ed psych assessment that leant towards social communication issues, query nld.

Not an official diagnosis yet, but we'll see how things pan out....

He's definitely too young at the moment for e label to be helpful.

The websites on NLD are horrendously negative. I found myself getting really cross and upset by the description of it and prognosis etc. The references to adult depression and differences being more pronounced in ks2 just made me feel too sad. Ds1 is lovely but definitely quite quirky. He is himself, just him.

I'm definitely not ready to accept the label (was a private ed psych assessment we paid for because ds just seemed so low and cross about school and friends so not as if we haven't sought clarification, just that I'm still processing things).

The school is on board but very "can-do" and positive about the next few years, which is a relief. Anyway - would be interested in how you broach this and how it goes for you, because I can see us having the same dilemma in a couple of years or so.

thegovernor Sun 03-Jun-12 23:14:53

@pooka Don't bother with the NLD websites. Just get your information from the Aspergers websites - they are more positive and helpful.

My DD is in yr 4 and although her difficulties are more noticable than when she was in KS1 she is still top of her class. I just cant believe there is going to be the academic decline that the NLD websites predict. However, I could be in denial.

On the socal and anxiety / depression side I do see these areas becoming a much more significant concern. I also get frightened when i read about how this is meant to get worse at secondary school. I guess we just have to wait and see.

Secondary school is my biggest worry, I fear that I will end up doing home ed actually.

Pooka Mon 04-Jun-12 07:31:31

Thanks guys. I suppose my fear is that the difference in terms of social confidence and happiness is so marked between year r and this year 1 that it seems to have been a massive setback - which is what led us to get ds1 assessed. We were knocked sideways between the discrepancy between his verbal and non-verbal abilities and his processing speed.

So much I think depends upon the teachers and he had an amazing reception teacher. Year 1 he has had 2 teachers sharing, one of whom just doesn't 'get' him. I'm hoping that the additional knowledge we all have about what makes him tick and the senco support and ifferent teachers next year will make yr 2 a happier experience.

One help I suppose is tht I haveand have had lovely and fascinating family members with similar levels of quirkiness who have led and lead happy lives. None labelled. Just slightly different.

thegovernor Mon 04-Jun-12 08:36:42

@pooka - yes that is a comfort. There are many members of my family that are obviously NLD / ASD (undiagnosed) and they have good jobs, happy relationships, children and have all found their way through the tough teenage years to live happy and fulfilling lives.

From what i've observed and understand NDLs definitely get happier and become a little less odd as they get older.

What discrepancy was there in your DS verbal and non verbal scores? My DD had a 21 point difference but her processing speed is on the 98% percentile. At the hospital they said only 5% of the population have an uneven profile like this. I wonder if there are any people with this type of profile that don't have social communication issues?

hellhasnofurylikeahungrywoman Mon 04-Jun-12 08:46:45

Telling my DS that he has Asperger's made it much easier for him, knowing that his social problems weren't because he was inherently unlikeable but because he's wired a bit differently boosted his self esteem loads - not instantly, but it's definitely made a difference as he's got older

Exactly this. My DS has Asperger's. He says he always knew he was 'odd' (his words), he too had been through the whole stupid and lazy label from some of his teachers. His peers didn't understand him and, to be frank, he didn't understand the usual childhood friendships. He related more easily to adults than to children. Learning that he has Asperger's made it easier for him to work out what was him and what was his Asperger's. Secondary school was tough for him but we didn't get his dx until he was 11, almost 12. Further education was the making of him though.

lifeisfuckinggreat Mon 04-Jun-12 09:04:56

My son is 8 with ASD and ADHD. We have been open all the way though the diagnosis process with him and finally getting a diagnosis was a shared experience although we have explained it to him in more detail. As we learn, he learns and I can see how liberating it is for him.

I still research and learn privately weeding out the negativity and when we do chat about it I put a positive slant on it.
It has given my son so much confidence to understand himself. He has gone through a process of accepting and then embracing his differences.

I truly believe that if I hadn't told him he would have struggled more with his relationships and wondered why he felt so different. Me, my son and my husband have family conferences where we approach the issues he struggles with (food, noise, sleep, being argumentative) and try and find a shared approach to it and we find that works for us.

It doesn't mean that I don't struggle with it myself, I don't share that bit with my son, our shared experience is hopefully more a positive problem solving approach.

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