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Should I tell my child about her label?(36 Posts)
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...
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.
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 elses 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.
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.
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.
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.
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 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.
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.
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.
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.
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!
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.
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
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!
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!
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!
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.
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.
@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.
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.
@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?
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.
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.
I think a lot of the negativity is them painting a worst case scenario type picture.
For us, ds1 went from a top grade pupil, top of his class in everything in the infants, to no progress at all through years 3 and 4. The slide was horrendous for him to cope with and his anxiety was through the roof. We so nearly pulled him out and home schooled BUT, with the right support in place and some truly amazing teachers he has flown this year and has now caught up to be just below top in his year again. He is honestly a completely different child from the boy he was in years 3 and 4. He is happy, confident and enjoying school and whilst I am obviously very worried about transition to secondary I am now able to see that, as long as we make sure he is properly supported, there is absolutely no reason why he can't go on to be happy and successful and find his own way in this world.
The fact that you are on here, expressing your concerns and talking with other parents of children who have AS or NLD, means that your dcs will also be well supported and have absolutely the best chance to be happy and successful.
Thegovernor - from memory (don't have the report to hand) in terms of centiles, the verbal reasoning scores were in 97th centile. The non verbal (forgotten the actual term used) were in average range, think about 49th centile. Processing speed was 14th centile. Working memory was 98th centile.
The ed psych said that the difference between the verbal and performance (think that was the term for non verbal) was clinically disparate, even though the non verbal was in average range. The processing speed was a shocker, because he's exceptionally good at what he's good at, but with hindsight would explain the fact that he is a totally different child in terms of his mood during school holidays to the child in the last 2 weeks of term, or at the end of the week even, when he's absolutely knackered.
Thankfully he is also one of the oldest in the year (September birthday) and I think that almost masks the immaturity in terms of social skills, but not quite. And I think the gap is narrowing a bit which would also explain the increasing problems we had this year pre-assessment.
The plan is to manage carefully the year 1 to 2 transition, get the borough's social communication guy in to observe him, continue with the differentiation he has for literacy (goes to year 4 for guided reading) and see where we are then.
It IS a comfort, you're right. And I'm so glad we initiated the investigation because I feel I'm more tolerant of his quirks and more aware of what I can do to try and teach him skills that come naturally to others. Or at least to try and help him make sense of differences. At the same time I'm gutted - was especially upset when I realised that the ed psych and the teachers had seen what I hoped wasn't there.
Pooka, those are similar results to ds1's WISC IV results, with the exception of the non-verbal skills which iirc were much lower. Can't check at the moment, as the report is on my laptop, which is currently dead. He was definitely 98th centile for verbal and 14th for processing speed though. I think ds's working memory was lower than your ds's as well though, as he came out as high average, so it can't have been as high as the 98th centile.
Ds was assessed as having a reading age of 13 when he was in year 2, which was as high as they could test with their resources at his infants. The SENCO said she felt he would have tested higher if they'd had the right kit. This has dropped back a bit now though, as, although is language skills are very good, he is not so good with inference and understanding character perspective etc, which becomes more and more necessary the higher they go in school. He is still considered advanced for his age, but plenty of his peer group are of a similar standard now, whereas before he was way out in front, iyswim. Mind you, his scores are also held back by an avid refusal to read out loud to anyone.
The processing speed result came as a huge shock to us as well, but has been useful to know, as now he is allowed extra time for timed assessments and tests and his teachers know to allow him thinking/processing time before he gets stuck into work. One of the ways the processing speed issue became obvious in time was that he started being unable to complete timed maths tests once the actual mathematics became more complex, whereas before he had almost always finished and got them all right. He started to complete fewer questions, still getting them all right, but not finishing the whole test. As this is attributed to his processing speed, his results are now aggregated from the work he completes, rather than as a percentage of the whole test or he is given extra time to complete the whole test before his work is marked. This has really helped his confidence, as he started to tell everyone he was stupid when his grades dropped, despite still getting practically every question he answered correct.
Moosemama - that sounds so similar to ds1! His reading age was assessed at 11 years in reception. Taught himself to read (or rather, absorbed what we were doing with dd, who is a couple of years older). He also refuses point blank to read aloud to us, though will do at school as part of the guided reading group and occasionally 1-2-1.
He also had loads of work in his books that was started and correct but he obviously hadn't had time to complete. Mostly maths, he's pretty fast at literacy work.
With hindsight, the teachers were telling me at the year 1 parents' evenings that they felt there was an issue, but without being explicit enough for us to pick up. Apparently the borough had bad experience wrt teachers suggesting some sen without having assessment back up, and that's why they can be reticent.
School was also shocked by processing speed, but now they know and can take to account. The ed psych report had clear bullet point recommendations which have been taken on board, at least for now. Remains to be seen how is applied - poor senco is under extreme pressure with far too much work to do and not enough resources. And ds1 wouldn't have had an assessment via school - his behaviour is generally good and he's not disruptive (at the moment).
I'm so pleased (if you see what I mean) to offload a bit here and to know others in same boat albeit a couple of years ahead. I Try to be really upbeat and nonchalant IRL and since so many of friends at school have dcs in same class as ds1 I really don't want to talk about it with them - seems disloyal to ds in screwed up way.
It's great that the school are proactive Pooka. Ours was the opposite, we were telling them we thought there was a problem and they were refusing to recognise it.
My ds was the same, well behaved, achieving well and not disruptive - hence why they wouldn't accept our concerns. Unfortunately he went into freefall when he hit year 3 and went into the juniors. At that point we brought in help ourselves by calling the Ed Psych crisis team. Ever since then his anxiety levels have been huge and it's this that causes the problems at school. He's not disruptive in the way most people would think of a disruptive pupil, but he takes up a lot of the teachers time and energy handling his worries and dealing with him when he's upset about something.
I know what you mean about it helping to chat online about it. I have never discussed ds in the playground either. There are only two other mums who know he has AS. It can feel pretty isolating sometimes.
If you want to, you could head over to Mumsnet Special Needs Children, as there are lots of people on there in similar positions to yourself, as well as others who have been through it and are further along. Lots of great advice and support and we are a really friendly bunch. Like you said, it helps sometimes just to know that you are not alone and to talk to others who understand where you are coming from. I joined MNSN well before ds was diagnosed and the support and advice I have had and still get on a daily basis over there has made a huge difference to my/our life.
Good for you for calling ed psych crisis team in - but so sad that you were on our own in the early school years.
I admit to lurking on SN Children threads.
I'm sure will head over in future, just getting used to things for now before I launch in. Is ridiculous - feels like an admission of a problem to talk about it, like I'm criticising ds. Daft and cowardly really.
I'm certain that there will be bumps along the way wrt relationship with school. Proof of pudding will be in the tasting and I'm dreading the year change while looking forward in hope of better class teacher support (senco is good news, but very overworked). His current teacher (well one of them) appears to take the view that he needs to be cut down to size, just doesn't seem to like him, and seems to tread subtly on any sign of self-confidence. When what he craves is praise and encouragement.
So sorry thegovernor. Feel like have hijacked your thread. Hope the books you've ordered are a huge help.
I completely understand what you mean and why you feel the need to lurk rather than post. I think most of us were the same at first.
I also understand why you feel it's admitting the problem and even betraying your ds a little to talk about it all openly. It's all part of the process and whilst we all handle things differently, many of us have been there.
All I can say is that eventually you start to realise that it's actually the polar opposite. Acceptance is one of the hardest parts for many of us, it comes with with time and little kindness and compassion towards yourself. Eventually you will come to the point where talking about your ds feels like a positive thing to do and is actually a way of helping you to help and support him. We all get there in our own time. Whenever you are ready there will be a warm welcome for you over on MNSN. If in the meantime you ever feel you are in need of some support, but aren't yet ready to brave MNSN, please feel free to pm me and I'll do my best to help.
By the way, ds1 had a teacher like your ds's last year - she was a nightmare and stole a lot of his self-confidence from him, BUT, take heart, this year's teacher is amazing. She is honestly the best teacher I could have asked for for him and then some. He has positively blossomed working with her and the effects were obvious within a few weeks of him being in her class. It's such a shame that so much of our childrens' confidence and success rests on the attitudes and behaviour of individual teachers, but sadly it's the way of the world. I honestly believe if all teachers were like my ds's current teacher there wouldn't be any need for an awful lot children with AS/NLD to be on the SEN register, let alone have a statement.
My apologies for the hijack too thegovernor.
Pooka you're not hijacking the thread at all. It's fascinating to hear your concerns because i can relate so much. This is also the first time i've really talked about dd and how i feel. Now she has a label i don't want other mums at school to know. I have talked / cried about it with a couple of close mum friends but they dont really understand and i feel embarrassed that im talking about me and my problems too much.
I know this is a couple of posts ago now but my dd scores were reversed. 92% vri, 48% wmi, 98% processing speed and 50% for the other one ( cant remember what that is). She is not disruptive at all and i think went under the radar because academically all was well. The school never referred her to camhs but i went the gp route when at a year 2 parents evening the teacher mentioned in passing that it was difficult to assess my daughter because she kept on curling up in a ball in the classroom when the teacher approached. It never occured to the stupid NQT that this was fairly important information that i might want to know about. By that time dd was also complaining of being bullied and excluded and was dreadfully unhappy and always making excuses not to go to school. I suspected she may be AS and got referred to cahms for an ADOS assessment. She didn't meet the criteria But a year later we were with cahms again this time food and eating issues (restrictive and selective eater) and we got referred to the complex disorders unit where they decided that she was NLD.
The school is trying to be supportive. Her current class teacher told me earlier in the year that she suspected dd may be AS and the teacher seems to have a really good understanding of dds needs and difficulties. The school has referred her to OT for motor skills and last year they set up a social skills group for her with other peers in her class but although they are willing to help and even go on courses to gain expertise, if necessary, they dont actually know what to do to help day to day as they have no experience of NLD. I am going in very soon to discuss the ed pysch assessment that they are about to do and to give guidelines on what i want the assessment to cover. I have a list of NLD teaching strategies to suggest that they should implement and a list of strategies they should employ during unstructured times to help. I have the feeling that I have to be very involved in directing this process to make it work for dd.
So my books finally arrived and DD grabbed 'the blue bottle mystery' and finished it in 20 mins. She absolutely loved the book and asked if we had the sequel. Fortunatly, I had purchased the sequel during my AS book buying frenzy from the weekend. She polished that off in another 20 minutes and started rummaging through the amazon box for another book. The only other suitable book I had was, 'can I tell you about Aspergers Syndrome' but I had planned to read this with her once I had rehearsed how I was going to approach the subject. She grabbed it and took it to read in the loo and we agreed to meet in her bedroom in 5 mins. As she walked into the bedroom she said to me, "I think I have AS" and she showed me page after page in the book the things that she related to.
We talked and overall I feel it went well -better than I had expected. She brought it up again today so she had obviously been thinking abou it. I don't feel its necessary to say anymore at his time unless she brings it up but I'm so pleased that I've laid the foundations for further discussions and made her aware that there is a reason why she doesn't always get it.
Thank you to everyone for your advice and for shaing your experiences.
Oh thegovernor that sounds most encouraging. I am waiting until I am at the point where I have really absorbed it before I can talk to DD about it. Last night she came home in tears after school sport where a girl mocked her for not getting goals at netball and the
uberbitch sports teacher was also unpleasant. She cried and cried about " why do I always get picked on?" It was the first time I thought it might help her to know about and understand her diagnosis. Will talk further to DH this weekend about when/how we tell her.
God, it is hard, isn't it?
Message withdrawn at poster's request.
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