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DD (7) is really starting to 'stand out'. Would a diagnosis really help?..

(28 Posts)
blackandwhiteswan Tue 14-Jan-14 11:06:42

Hello smile

My DD first started showing signs of being a bit different when she was about 2- 2/1/2. Her vocabulary was a tad behind, but not so much that it concerned me. It was always her social skills which were a problem.

When she was 3, she started pre school and really struggled. She was having major tantrums and didn't always get authority. At home, the tantrums were horrendous. I was being hit, bitten, scratched, spat at sometimes and this was on a daily basis. One of the women in charge at her pre school would raise her concerns on a regular basis, not about her bad behaviour, but her lack of social skills. I took her to my gp who instantly dismissed her issues as being immaturity and that she just needed time etc. I still believed her speech wasn't where it should be and so I was referred to a SALT, but was discharged after the first meeting as they didn't believe she reached the criteria and was actually doing just fine with her speech and was where she should be, if not a little ahead. This completely through me and actually, things did get much better at pre school and so, we just plodded on and were at the 'wait and see stage'. When she started school, she struggled again and the TA and I would often liaise at the end of the day. It would usually be that she's has a tantrum or 2. However, very quickly she settled in and academically really caught up. Her social skills did improve slightly I would say, but I still thought she stood out and was still struggling to make and more importantly, keep friends.

Skip forward a couple of years and things have been a bit of a rollercoaster. I have had several meeting with her teachers, on my request and they have all told me that yes, emotionally she's immature, but she interacts appropriately and academically she's doing well. So why am I still worrying?......I'll give you a list of my concerns.

She still has tantrums, sometimes physical
She has yet to make and keep a friend
She will jump about and spin a lot
She zones out sometimes
She notices tiny details
She gets her sentences muddled up
Unusual use of language
Gets frustrated and tearful when she struggles to get words out
Overly friendly
Can get lost in her fantasy world and can play with a tiny figurine for hours
Very emotional: Anger, happiness, frustration, sadness, all heightened.

I should stress, that all this isn't constant. She can go through weeks at a time when she's so much more chilled and just generally more mature.

My family keep trying to reassure me by saying she's just quirky, this is who she is etc, but now she's 7, I think she's really starting to stand out as really quite different from her peers.

The question is, what would a diagnosis of, more than likely HFA/Asperger's, do for her? She's not struggling in school academically. She's not disruptive. She's able to learn. If she does get upset at school, she can calm herself down.

I am not with her dad anymore, but am considering having a talk about whether or not we should push for a referral.

Would really appreciate your thoughts, experiences etc.

Thank you for reading

blackandwhiteswan Tue 14-Jan-14 12:01:38

Anyone?

I really do feel like I'm going insane, because I know what I think, but everyone keeps telling me that I'm over analysing, or one my mum's favourties " so what, she's a bit different. It would be boring if we were all the same".

PolterGoose Tue 14-Jan-14 12:29:51

Can only reply quickly, but diagnosis for my ds (primary dx of Aspergers) has been a very positive thing. Not just for validating his needs, but also for him with understanding himself. He is very confident in his difference, it's not a bad thing, but without the diagnosis other people would not believe that his behaviours were anything other than naughty/horrible/weird and that his difficulties were the result of crap parenting.

Am happy to answer any questions, but am at work so might not reply until later.

Borka Tue 14-Jan-14 13:53:48

I agree with Polter, and would also say that although your dd is coping reasonably well at the moment that might change as she gets older. It would be a good idea to start the dignostic process now, rather than wait until she's struggling more - it took 18 months for my ds to be diagnosed, although the timescale can vary a lot.

BallyGoBackwards Tue 14-Jan-14 15:54:45

I agree with Borka. I would start ball rolling now for a referral. I think your list of concerns are reason enough to be honest. My DS didnt display any bad behaviour and was quite quiet but still there was something I just couldnt put my finger on.

My DS has/had language problems similiar to your DD. Sentences back to front etc. Once at school his spelling etc were the same...as in mixed up. I thought maybe he was dyslexic. He was finally dx with ADD. He takes meds at moment and they help his speech and his ability to keep his emotions under control.

blackandwhiteswan Tue 14-Jan-14 17:59:28

Thank you everyone. Really appreciate your replies

Bally I didn't realise that children with ADD had trouble with speech and controlling their emotions. I thought it was all about attention difficulties. Speech and heightened emotions are definitely my main concerns when it comes to my dd. Do you mind if I ask what medication your ds is on? Do you mind describing his behaviours before and after medication?

popgoestheweezel Tue 14-Jan-14 18:36:45

You say your dd zones out- that could be a sign of ADD too. Many children have ADD and ASD together and that can cloud the issue too. I would press for assessment, better that she gets help if there is an underlying issue.

AliceinWinterWonderland Tue 14-Jan-14 18:56:31

I am going to say something that might sound a bit odd or rude, but here goes... ignore what family and friends say. Seriously. If you are concerned, get it checked. Even AFTER dx, family and friends were still making comments like that, even though DS1 clearly has disabilities.

blackandwhiteswan Tue 14-Jan-14 19:48:08

Alice, I have heard that before. It's not rude, you're speaking from personal experience. It's so hard, because it seems sometimes like I'm living in a different world. My concerns are constantly dismissed and very briefly, I'm comforted. Then I get a slap round the face with reality and realise that I need to act. I'm so anxious of the outcome and it kills me to think I could make the wrong decision for her.

AliceinWinterWonderland Tue 14-Jan-14 19:52:47

I still get "he'll grow out of it, he's young" and "he doesn't look disabled/autistic/etc etc" "he can't be autistic he's clever" and so on and so on... and then two minutes later they're making comments about his OTT behaviour. hmm Apparently they just can't make the connection - they'd rather believe he's badly behaved than disabled. Says something, doesn't it? confused

But yes, we had so many people fobbing us off, telling us he was fine - family, friends, GPs, nurses on nurse visits, HV. You name it. I literally sat in the SENCO's office and cried when (3 days into reception) she said to me "we need to get him referred to a paediatrician to have him assessed for special needs of some sort." She (and the teacher) were the first ones to actually listen and help.

popgoestheweezel Tue 14-Jan-14 19:54:11

Don't worry, you won't. What is the worst that can happen? DD's issues will sort themselves out, profs will tell you she's fine- you get on with the rest of your life. Or, her issues do need extra support which you will access for her by getting the profs on board and you maximise her chances of success.

blackandwhiteswan Tue 14-Jan-14 20:50:15

Alice, I completely relate to what you said about family and friends saying there's no problem, but then questioning the odd/unusual reactions. I'm not sure why people react like this. I would say it was a mixture of misplaced kindness and ignorance. I think it comes from a good place, but nevertheless, it's not helpful in the long run as I'm starting to realise.

That's a very good point pop. Here's hoping it's the former, but I think that's wishful thinking.

Unfortunately I'm not really in a good place right now, mentally. My head is so messed up and I sometimes feel too weak to cope. I know I have no choice and hopefully this will just be a blip, but it still really scares me to think that this 'journey' could trigger another bout of depression. I have only just come out of the last one and that was really hard.

AliceinWinterWonderland Tue 14-Jan-14 20:56:12

You just need to remember that regardless what any of them say, your child hasn't changed - she is still the same she always has been. This is just perception and words and information that will help you help her (and yourself). But she is the same little girl.

blackandwhiteswan Wed 15-Jan-14 10:00:32

Alice, I was actually going to say that I know I need to keep reminding myself that she's the same girl she was before and that nothing will have really changed.

Also, I'm really concerned that she'll be given an incorrect diagnosis. I would have thought this is quite common with children who only tick one or two of the boxes of a certain condition. I would imagine that different specialists would give different opinions.

BallyGoBackwards Wed 15-Jan-14 16:21:01

op my DS is on Concerta 27mg daily.

I suppose the differences are that when he is on meds he has greater attention, not as impulsive, his speech isnt as quirky (for want of a better word) Most people dont realise that he has issues with speech at all. He was always at his worst when playing sport. Always wanted to win, always wanted to be first and it was at these times that he may lash out or get emotional. All of this has stopped with medication.

He always reads "saw" as "was" and vice versa. He'd say pinny gig for guinea pig. He laughs as he says it cos he knows its wrong but cant get his head around it!! He has hardly any recall so cant remember phone numbers etc.

We never had tantrums or lashing out at home so ADHD was the last thing on my mind. Really thought dyslexia. However we got a dx privately, one in Ireland and one in Uk and they all came back the same so I have no doubts.

I second what others have said about listening to family and friends. They always said "its just him", "nothing worng there" etc etc but I knew. My Dsis who works in Senco dept of school still is hmm about his dx.....drives me insane!!!

BallyGoBackwards Wed 15-Jan-14 16:22:36

Sorry meant to say that I really believe that having a dx is the way forward with regards to schooling. Before, he really struggled trying to keep up and very little allowances where made.

youarewinning Wed 15-Jan-14 21:25:10

I agree - get referral as waiting lists are long. Your description (inc the family bit) sound very similar to my DS and our story.

Be prepared to state rigorously your case to gps, professionals and I would suggest starting a diary. Use the information you've given us as a starting point and then evidence examples of the behaviour, triggers if known etc.

Handywoman Thu 16-Jan-14 10:04:26

Hi OP, missed this thread until today. Oh my goodness your description of your dd and her history is ringing so many bells.

I would say please keep pushing for referral and assessment. Please (with the greatest of respect) ignore comments from family and friends. In my case my family have been hugely supportive but rarely ever see the real differences or the extent of the difficulties. My brother has been brilliant and never dismissed my concerns. He saw a proper meltdown for the first time this Xmas and nonetheless was truly shocked. Family will never see it like you.

Girls are very difficult to diagnose, the process for my dd2 was four years in total. She had a severe language disorder/delay plus hearing loss, has poor attention and has now been diagnosed with ASD. We await a potential additional diagnosis of ADD.

However in all this when she goes through a 'good phase' plus at school she won't necessarily 'stand out'. It has taken an awful lot of pushing to get school to realize there are difficulties.

Please keep pushing for referrral. Video tantrums if at all possible. Make observations of difficult behaviour/triggers and collate them into a diary. Then compile them under headings such as non verbal/routines/sensory/friendships/use of language/interpretation of language.

HTH and keep going!!! Oh and keep posting here.

blackandwhiteswan Thu 16-Jan-14 10:34:47

Bally, it's great that the medication your ds is on is having such a positive effect. Were you reluctant at all in the beginning to go down that route?

Thank you, youarewinning

Handy, if your dd was having severe speech and language problems, how did the school not see there was any problem? Do you find that the 'good phases' happen randomly, or could you see a correlation? My dd was having a really rough couple of weeks. Daily tantrums, talking back to front and getting frustrated, confused etc. She's been much better the last couple of days, but then I've gone back to cutting right down on sugar and been making sure she's eating more fresh fruit and veg. Also, I've tried to be calmer and have been more strict about mess. Her speech is better and she just seems happier. Need to keep it up. It's so easy to forget how all those little things add up and before you know it, becoming lax and things are back to being chaotic.

I have been researching ASD in girls for years and I genuinely never really thought about ADD, even though I did read that they can often go hand in hand. The more I read about ADD, the more I think that this is more likely what my dd has.

I don't know if this is right and I'd really appreciate your thoughts, but I've started telling dd if what she said sounds odd confused Should I be doing this? She's actually responding to it quite well. She says that she knows it sounds odd, but sometimes can't help it and that peers encourage her to be silly, because it makes them laugh. If fear they're laughing at her, as apposed to with her sad I've even heard her start to use a silly voice and then she'll say "ooops sorry, forgot" and then use her proper voice, so I don't think it's doing harm. Hopefully it's actually helping her, but I have been reluctant in the past to correct it in such a way, because it just seemed cruel. Don't get me wrong, I have told her if her behaviour is inappropriate, but silly voices, expressions, or odd/out of place comments, I tended to let go. Does anyone else do this?

Handywoman Thu 16-Jan-14 10:50:32

I think odd voices etc are symptoms of social communication problems, my dd often likes to play the fool at school because she has less awareness and it takes less 'fitting in'.

Re my dd2's language problems, she had intensive SALT aged 4 to 5 and made up a lot of ground. Still, in nursery, they were none the wiser hmm. As long as kids have clear articulation and good vocab language problems tend to go un noticed, particularly the literal understanding, poor inference, pragmatic (social, contextual) issues and use of a formal language style (my dd would say in every day interaction I am a fan of cats instead of 'I like cats'. This can make them sound linguistically over-competent. Teachers don't get any a lot of training in language difficulty.

blackandwhiteswan Thu 16-Jan-14 11:23:03

Handy, interesting. My dd's teachers will often say things like "no no, no language problems. If anything, she's ahead, because she has a very grown up way of speaking". I've always suspected that this is more a case of her using learnt phrases, as apposed to just being more grown up than her peers.

She's always homed in on dc's with SN and I think that's because she probably understands the feeling of being a little different. However, I also think that this could be contributing to teachers not seeing my dd's issues, because they see other children with more obvious SN and my dd acts differently to them.

I do like her new teacher and when I do bring up my concerns, I don't feel that she's just brushing them off and is trying to get rid of me. She does seem to know how my dd works and she understands that she's a little different, but like pretty much everyone else, thinks that if anything, it's a positive.

Handy, do you mind describing your dd's symptoms? How old is she?

Handywoman Thu 16-Jan-14 13:31:59

well you did ask!! (adapted from my list which I took to Paeds appt)
• Unable to see others’ point of view
• Consequences are very difficult to implement
• Unable to reflect when things don’t go well with friends. Always always remains ‘fixed’ on the actual incident, unable to get past feeling offended/upset/wronged.
• finds it impossible to talk about feelings.
• Overly emotional responses. When offered something she cannot say ‘no thanks’, but instead: “I DON’T LIKE X” (even if she does) it’s all ‘black and white’.
•Aversion to novel / different things
• She has a few routines and likes things done in a certain order
• Literal understanding of language - examples:
Mum to Dad: ‘don’t push her over the edge’ said: “Dad said he was going to push me over”
‘don’t even go there’ : “Go where?”
‘I’m coming’ (as in I’ll be there in a minute) says “but you are not moving…”
• Conversation often one-sided, except when asking for information. Might change subject entirely (along own motivations and thoughts) or go off on tangent, conversations never ‘develop’. Expressive language might be slightly off key or vocab imprecise
• problems with group dynamics e.g. family games, after-school club. upset when things don't go her way
• Non verbal : I have to say the words ‘I am getting cross’, out loud for her to realize although if I really raise my voice she will cry. Needs to have explicit verbal instruction (plus physical reinforcement) in these situations to tone her behaviour down.
•Friendships : Level of friendship is immature/superficial. Can be inflexible with friends. often doesn't see the point of taking turns or sharing
• Playdates: can have tantrums in the presence of friends at home, and at friends’ houses without me.
Has struggled to understand how to treat playdate ‘guests’ and has needed a lot of explaining over the years about how it works.
• Style of Play
can withdraw during lone play, using repetitive sequences (stuffed animals ‘getting up’ or ‘going to sleep’ repeatedly) and using incomplete sentences. She might make unusual selections to use during lone play, e.g. a stapler and a staple remover, used generally as ‘characters’ when there’s a huge selection of dolls/toys in the house (has never opted to play with dolls except to join in with her sister). Loves playing for long spells with bottle tops and marbles
• Attention I might ask a question, she starts to mull it over then spontaneously forgets the question within a few seconds (distracted by own thoughts).
• Extreme meltdowns: can lose control, kick, scream and be violent.
• Sensory issues: generally moving, fidgeting, rocking, whistling at home although seems to suppresses these at school. Complains about jeans, she dislikes the feeling of them on her waist. Refuses to wear jumpers (‘too tight’). Prefers not to wear socks and will remove immediately on entering the house. hypersensitive to sound despite hearing loss.
She's nearly 9 btw... and bright and lovely (mostly)!
x

BallyGoBackwards Thu 16-Jan-14 18:18:26

Black I had concerned about the meds but researched as much as I could. Our paed was saying that if a child had asthma you would give them meds no problem, or any other illness. But I suppose to the average joe soap.....well its kinda like you are giving your child brain/mind altering drugs ( said very simply)

He was first on a stronger dose, for approx 10 months. We felt these were too strong for him. He was very subdued on them. I have previously said "kind of zombie like" . Anyway after this time we had the meds reduced and these seem to suit him alot better.

My DH is still unhappy with the fact that we (or I) give these meds to DS. He feels that we just dont really know what long term effect they will have. I have taken complete responsibility for this. I feel I have researched it alot and also got alot of advice etc from here. So although DH objects he hasnt exactly any concrete reasons as to why smile.

blackandwhiteswan Fri 17-Jan-14 10:41:14

Handy, Thank you smile

Well a lot of that sounded very familiar. Particularly when you mentioned her being overly emotional and the literal understanding of language. Last night for example, she was telling me that someone at her school said that she had "fallen for it" and asking me what they meant. So I explained it meant someone has been tricked etc and she said "but I didn't fall". It didn't matter how many times I tried to explain it, it just wouldn't sink in. Oh and sensitivity to some clothes. Although, that's quite rare. She has a pair of jeans which she won't wear anymore cos she says they make her feel sick. Sounds like they would get on quite well.................you're not in the midlands are you? grin

Bally, I think it's common for couples to not necessarily agree on such decisions. I understand where your dh is coming from, regarding the future. However, I'm sure you've done endless amounts of research and you wouldn't have come to that decision lightly. Like a lot of medication, it's a bit of trial and error to find out what dose works for you. I know this isn't the same, but I give my dd quite a high dose of omega 3 6 and 9 (eye q) and I noticed a massive change in the beginning. Mainly with her temper and school work. Almost over night, her writing was so much neater and she seemed more control of her emotions. I was absolutely over the moon as you can imagine. However, gradually, I would say that it's not as effective as it once was. Having said that, I notice a big change when I forget to give it to her! Even if it's just one day.

It makes things extra hard because me and her dad recently broke up and she spends a fair amount of time with him on her own. He's a good dad and he understands her 'issues', but I'm the one doing all the research on how to help her, with her diet etc and then she goes to his and I feel like all my work has been undone. It's very frustrating. It doesn't seem to make a difference how many times I remind him how important all those little things are. It feels very much like 1 step forward, 2 steps back.

blackandwhiteswan Fri 17-Jan-14 16:27:49

Things not good here tonight. Dd is in a terrible mood and it's really distressing to watch. She broke down in tears when she got back from school and told me that I never understand her. When I asked her if she could explain what she meant, she cried even harder and said that she couldn't and that she felt like she was in a dream. She says that a lot recently. Has anyone heard this before? It's awful to think of her feeling so strange. It must be horrible sad

Handywoman Fri 17-Jan-14 17:52:26

your poor dd, hope she is a bit brighter now thanks

mombie Thu 23-Jan-14 06:49:06

Handy you sound like me a few years ago. I was going round and round in circles with whether or not to go for a referral. I had a whole list of things for Ds 1. On their own nothing seemed serious enough but together, it can be overwhelming. Everybody said he was quirky or eccentric and that there was nothing wrong with him. Makes you feel like shit for even suggesting that there may be an issue with your child. You have to remind yourself that you are not picking fault with your child or suggesting there is something wrong, only trying your best to support him. Even after a diagnosis, some people still can't grasp it. In simplest terms I explain that there is nothing wrong with DS, only he has 'glitches' like the little girl in Wreck it Ralph. that seems to do the job. Lol.

In the end I asked the school Senco to observe DS in the playground and classroom she felt that there was a need for referral, contrary to what his teacher thought. ds was diagnosed with HFA a few months back, and it has been the right thing for us. mainly so I know what how to deal with him and so that his teachers can understand him better. He gets a lot more support from the school now and doesn't have to dea with the 'pull your socks up and get on with it' brigade, who,we're causing him so much stress.

DH and I were talking about it yesterday night and how all of his quirks were seen so negatively before but not anymore. How letting him be instead of trying to control the glitches has made him so much happier. In short get a referral, if only to understand your DD better. good luck x

mombie Thu 23-Jan-14 06:50:24

Sorry I meant that post for Op but directed it at Handy. Lots of love to you both though ! Xx

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