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DS has 'problems' that don't match his DX. Sad, confused and frigtened about the future.

(29 Posts)
PrimroseHall Sat 05-Sep-09 20:08:47

DS was diagnosed with mild ASD when he was 3. Apart from SLT sessions, I gave up with pursuing support for him because nobody agreed with his DX. DP never accepted the DX, and we live in denial about it. DS is 7 now and doesn't know anything about this.

I don't know what to think about his supposed ASD anymore. I don't think it fits him either, though tbh I can't even remember the triad of impairments anymore - social interraction, imagination and ?

His main problem is socialising, definitely. He's not like other children and had such problems at school that I removed him and am now teaching him at home. He wasn't really bullied, but didn't have any friends and despite my/teacher's best efforts he was lonely and sad all the time.

It's becoming increasingly harder to find opportunities for him to socialise. We share a garden with 4 other families and the children all play together in the garden. His main playmates are a 6 year old boy and a 5 year old girl, and while they were young enough to need constant adult supervision things were fine. Now they are a bit older a divide has formed and DS is no longer welcome to join in their play. The other chidren are either toddlers or teenagers so not really appropriate as 'mates'. DS goes outside when he hears the other kids out there and then I have to go and get him in when he cries because they won't play with him. He was very upset today because they told him that they've never been his friend and that he's 'stupid and rubbish' <sob>. Don't know what to do about this. It's cruel to keep him from going out to his own garden, but I can't make the other kids be nice to him - same situation as at school sad.

He's also become obsessed with food over the years and is getting fat. He asks for food almost constantly and is never full.

I don't know what to do. I know he's not NT and that he needs help, but where do I get that from? The last Paed. we saw (couple of years ago now) said that he didn't have ASD and was just a 'bit odd'. I don't mind him being odd as long as he's happy, but he's not happy. He wants to fit in, but hasn't a clue how to. Is there any point in putting him through asmts again at this stage? I'm worried that perhaps I'm barking mad as nobody else will admit that he's fundamentally different to other children. I don't want DS to know that I think there's something wrong with him if nothing good will come of it anyway.

HelensMelons Sat 05-Sep-09 20:55:09

Gosh Primrose, it sounds very stressful for you and your little ds. My ds2 has a dx of asd/adhd and he has great difficulty socialising, turn taking, following rules, change in routine - that sort of thing.

Have you been in contact with any organisations, either local, NAS, CAMHS? GP perhaps for help around his diet/comfort eating(?)? Are there any special needs groups near where you live?

Do social stories help with him?

I think this board is a good source of information and I am sure some other posters will come along with good information.

It does sound like you both need support.

lingle Sat 05-Sep-09 21:57:27

Hi Primrose,

My eldest brother is 45, also had big difficulties with social communication, and was also rejected by children playing out in the street and I believe also at school. Now at 45 he is a very kind and dutiful son, brother and uncle who has a steady and responsible job as an immigration officer and also does sports commentary on the radio at the weekend! I rely on him in family crises (our mother's cancer for example). I know I can depend on him so long as I do not ask him to be share intimate details of his life or others' lives in a way that makes him uncomfortable (if I do he will switch the conversation to the weather!). I do not believe that he has intimate friends but when I see him with the family dog or with very young children (my kids included) I see the kind person inside. I am aware that he forged one longstanding friendship with a school classmate whose brother died - we had no idea about it until the mother saw my mother in the supermarket years later and said "we have never forgotten the support your son gave us after our loss" my mother had no idea what she was talking about!

My parents didn't handle the situation with my brother that well - they fell out with the neighbours (the ones whose kids refused to play with him) and then went silent about it all, so there was this vague sense of shame hanging over us from as long ago as I can remember. Most damagingly, my father always felt there was something "wrong" with him rather than just seeing him as a child with a problem in one area of life who needed help.

Looking back, it's amazing my brother has come out so well - you're obviously much more clued up than my parents so hopefully your son will have a still more positive outcome smile

I would be happy to learn more about your situation but my instincts (and experience with my brother and now with my own son) tell me initially.....

- don't fight your DP - your aim is for him to accept your son as a child with problems socialising who needs help learning to do it. Learning to socialise isn't rocket science and as your son gets older he may be able to talk about the things he struggles with - but not if he doesn't feel that you and your DP accept him for who he is now IYSWIM (this is what my parents failed to do).

- kids with ASd are more different than they are alike so your close observations may be more useful and helpful than revisiting the diagnosis issue.

- on the other hand, might the other parents be more willing to get their kids to behave if they thought of your son as having special needs? just a thought and depends on them of course....

- one thing that would have helped my brother enormously would have been having a dog in childhood. It sounds trivial but I don't think it is. Lonely children have depended on dogs for rich friendships forever. A beautiful dog (like a retriever) can also be a fantastic ambassador for a person who finds socialising difficult.

- The book "Talkability" published by Hanen ( is written specifically to assist parents in helping their kids cope better with socialising - you might want to check it out. I am already finding it helpful for my son who has just turned 4.

- Talkability and other books focus a lot on helping children be more flexible in their play. You can role-play this with your son.

- Could you encourage your son to develop hobbies where he could have slightly more formal predictable interactions with other children until he started to meet like-minded kids? I'm thinking of orchestral musical instruments, chess, karate - something with structure.

Barmymummy Sat 05-Sep-09 22:02:55

Thats a great post Lingle, have taken great comfort/advice from that. Didn't mean to barge in, just wanted to comment, smile

moondog Sat 05-Sep-09 22:09:23

Yes lovely post Lingle.
I was going to suggest an animal and a rule governed activity or two.
(At other end of that fun spectrum, really physical unstructured stuff can be helpful too. like walking or swimming).

I'm a SALT Primrose and see lots of kids like yours. I also have a dd with language problems who has similar difficulties sometimes.

I think you are right to question the purpose of another round of endless assessments and appointments with people who, irrespective of their medical background, do not know you or your child and have no idea of the nitty gritty of day to day life.

My opinion (often aired on MN) is to keep 'professional involvement' to a minimum wherever possible because it eventually becomes a monster that feeds off itself in terms of meeting and paperwork and meetings withpeople who weren't at first meeting, cases neing transferred blah blah blah.

Waste of time and energy.

Also, remember that it's okay to be different and quirky. We don't all have to fit the mould.

PipinJo Sat 05-Sep-09 22:19:58

Message withdrawn at poster's request.

PrimroseHall Sun 06-Sep-09 01:28:25

...communication, that's the one. Thanks Pipin.

Oh, it's nice to be back on the SN board. Moondog, you were very kind to me when DS was first DX'd. I'm glad to see you on here still.

Lingle, thanks for your lovely post. Very comforting and such a tribute to your brother. I would love for DS to grow up and have a role in society and be valued for what he contributes. Just like your parents, I have fallen out with friends before because their children have been cruel to DS. It's always a bad idea, but so easy to blurt something out when you're upset.

I have thought about telling my neighbours that DS has social difficulties, but I think rather than helping, it might backfire on him. They're not friends of ours, just people we nod to. I'd worry that they wouldn't respect DS's feelings and tell their children who might then tell DS.

Thanks for the ideas you've all given.

Social stories are something that I've tried to do on my own by making up scenarios with obvious consequences and telling it as a story - no idea if I'm doing it right or if I can access proper literature that would be more helpful.

Getting a pet is a lovely idea and something that DP and I have discussed a lot lately. We're in a second floor flat with no private garden (just the shared one and animals are not allowed) and a balcony, so cats are out of the question I think. We'd love a dog, but it would have to be a small one I suppose. I'd completely love a retriever but it's probably not fair to keep such a dog confined for most of the time. I'd be happy to walk it for hours and hours each day, so if it sounds do-able please say so. Otherwise, does anyone have advice on other breeds that might be suitable?

Moondog, you've summed up my concerns about professional involvement perfectly. I don't regret our first bout of asmts because I'd have gone crazy eventually if I had just kept my worries to myself. We've had the bad news, that DS is on the spectrum, and we I have come to accept it. If I thought that a new DX would open up opportunities for therapy this time I wouldn't hesitate. Maybe I'm just disheartened with the system, I don't know.

Thanks everyone.

PS Barmy, you weren't barging in. Don't know your circumstances but I'm glad you found comfort in Lingle's post too.

Merle Sun 06-Sep-09 08:22:52

HiPH - my son is maybe ASD/mild if he is and/or quirky/odd. We had the first round of assessments, which took years and came with no real assistance, which, like everyone else, I found dispiriting. We still see a paedetrician about once a year and this has recently been useful during the transition to secondary.

He goes to a small village school and I have found the disadvantage of this to be that it is very easy not to fit in/there is a very small pool of children with whom to bond and if you don't you are out on a limb. Sometimes we have thought of home ed. but haven't gone down that route. My son is just about to go into Yr 6 and has one good friend who he sees a lot. This friendship has developed during the time he was 7-10. I say all these things because it could be a good idea to give school another try. Maybe your son has matured and would mature further, given the chance to be with children of his age-group. I don't pretend that this will be easy, sometimes for us it has been very sad, but I do think that it has been beneficial for him to mix and to learn from that. My son is still a lot less mature than his peers but as long as he has the one friend it all seems managable.

Is it possible that you have some other schools near to you, perhaps they have a better approach to inclusion? Is it worth another try?

mumslife Sun 06-Sep-09 09:21:14

Message withdrawn at poster's request.

moondog Sun 06-Sep-09 11:28:39

Have a quick look at this nice site and its bit on social stories for a gentle introduction. Not personally familair with the guy but I like what I see.

Glad my advice was helpful Primrose.
I happen to think this section of MN is one of the most useful sources of practical advice and support out there.
Tonnes more useful than sitting in the office of a stranger answering the same questions over and over only or them to disappear into a manila file which disappears nto a filing cabinet.


lingle Sun 06-Sep-09 20:39:52


I'm no expert but I think that retrievers are extremely flexible - provided you exercise them of course. They are used as guide dogs after all.

You could ask animal experts but my parents had a hillarious experience when choosing a rescue cat - the Cat Protection League came round to "vet" their home before they were allowed to take the cat home! They had to sign a list of improvements they would make to make their home good enough for the cat! My parents felt - and I agree - that there seemed to be far more concern and regulation shown about having a cat than having three children.....

There is a series of books called "choosing a large dog", "choosing a small dog" and (you guessed it) "choosing a medium size dog". My father used to sit reading them all pathetically until after about 4 years I found him a litter of retriever puppies and he hasn't looked back since.

PrimroseHall Sun 06-Sep-09 21:19:37

Merle, I have mixed feelings about DS returning to school, but I will let him go if/when he wants to. I only took him out in February so he hasn't had much chance to mature yet. There are no other suitable schools in the area so he'd have to return to his old school unless we moved. The Head wasn't supportive of our decision to remove him but she did say he'd be welcome to return and that she was eager to help with the transission if/when he was ready - she was very good about it actually. I don't have any major concerns about his old school, they could have tried harder to help him IMO, but I don't think there was any real solution - it was DS's own behaviour that was making him unpopular with other children although he couldn't see what he was doing wrong.

I'm glad your DS has formed a friendship at school. Just having someone to spend breaks with makes a huge difference to him (and you) I bet.

Mumslife, yes, I feel the same about being on the edge of normal. DS's problems are mild compared to other children with ASD that I've met, but the gap between him and his NT peers is still pretty wide.

Thanks for the link Moondog. From reading through some of the stories there I can see that I've been doing it wrong - too much plot and detail to get the desired message across I think.

moondog Sun 06-Sep-09 21:32:41

I have to say that I do feel that removing a child from school only makes situations like this worse. There is also added stigma of not being part of the gang, taking the rough with the smooth.
(Not saying I do not sympathise with parental decisions of this sort. I really do, but without people to practice one's social skills on, they will not get any better. They will probably get worse.)

PrimroseHall Sun 06-Sep-09 21:38:01

Oops, sorry Lingle. Didn't see your post until after I'd sent.

Hehe, I've been looking at some of the dog rescue sites today so I know what you mean about the strict requirements.

"My father used to sit reading them all pathetically ...". That has tickled me, probably because I've spent hours today looking at dog profiles.

I'm going to start a thread over in pets asking what breeds would be suited to a flat. I've read today that some dogs might need to be carried up and down the stairs to prevent hip problems in later life. Perhaps the dog rescue centres will ask me to install an escalater if I ask them for advice hmmgrin

lingle Sun 06-Sep-09 21:52:08

good stuff smile

My DS2 goes back to pre-school tomorrow. Am a bit nervous!

Merle Sun 06-Sep-09 21:56:24

Agree with Mumslife re. being on the edge etc.

Feel like running into your shared garden on your DS behalf and kicking up a fuss, but of course this would be a bad thing but doesn't stop me wanting to remonstrate on his behalf.

Reading your OP again I noticed what you said about supervision. I can't really let my son play unsupervised for very long. He's 10 now and can go to the park on his own, or with his pal. But he very easily gets into conflict situations with other children and so I still quite often go along to keep an eye. When he was 5 or 6 and going to parties, I always stayed.

lingle Mon 07-Sep-09 10:03:14

It's so hard to stick up for your child without making it worse isn't it?

Just occasionally I've managed it: when DS1 still had a bad language delay and a very verbal "friend" was laughing at him and asking me "isn't he fussy the way he does that? I thought it would be fun playing with him but he's no fun is he?" (with a big smile). I smiled back at the child and said: "What you have to remember is that I think DS1 is great. He has a lot of language to learn still but I love him more than any other child. I think he's wonderful".

cue silent thoughtful brat child.

Behind my charming smile there was, of course, pure (if inappropriate!) hatred and a very clear image of slapping child's face blush.

Rather wonderfully, I have since seen DS1 use the same technique to defend DS2.

Anyway, you don't have to watch too many feature films to realise that this technique (older/cooler seemingly invulnerable person shows unconditional liking for non-cool person) works where all others fail!

If you went and supervised in the garden you might be able to do some variation on that. Also you could join in the play and be a "cool mummy" so you become an asset. You or your partner could play a garden game with your son (but you must practice when the other kids aren't there first so you have a routine established) and have the others begging to join in. Rather than instruct your son what to do to be allowed to join in you would show that you have your own cool family games that they have to ask to be part of. The key point would be to convey to the other kids that you and your partner(i)are cool and unflappable and (ii) are not ashamed of your son but really, really like him. But you couldn't ever let your guard down for fear of what the other kids might report to their parents.

Think of it as being a spy in enemy territory.....wink. You could report back to us in code grin. I'm only half joking here - talking to us might help you keep that "friendly" smile on your face.

god, children are just horrible aren't they? (sorry, it's all coming back to me......has made me get carried away and now the post looks prescriptive - oops)

Merle Mon 07-Sep-09 10:11:33

Think that the advice that Lingle gives re. cool games etc. is a good approach. Sometimes I have found it helpful to think of my son's SEN issues, or whatever they are as a 'learning difficulty'- he just needs more tution in some things than other children. You're also doing these other children a favour as you are teaching them valuable lessons re. inclusion and difference etc. I can't abide smug children/adults who think that 'normal' is the only way to be.

mysonben Mon 07-Sep-09 14:44:43

I second others'opinions that maybe your ds should go back to school, give it another go, talk to the school senco,...
The idea of a dog is great.
Lots of smaller breeds can make an ideal pet for children (cocker spaniels are great fun! wink)

Also is there any particular thing your ds really likes ,has an interst in?
Maybe a club relating to his interests would help?

I agree with Merle and Mumslife, my ds has mild asd too, and struggles with things other kids simply takes in their stridde.
"mild" doesn't mean it's easy...and people have a tentancy to dismiss his issues because they are mild but still cause him some problems.

moondog Mon 07-Sep-09 16:06:53

Wonderful email Lingle.
This is exactly my philosophy and personal approach.

moondog Mon 07-Sep-09 16:07:56

Only thing I would say it to change the 'but' to an 'and;.

It's an effective strategy in all and every situation actually.

PrimroseHall Tue 08-Sep-09 14:33:01

Moondog, I know what you mean about social skills becoming worse when there's no opportunity to practice. I took DS out of school because I was desperate. It was a good decision in most ways, but there have been drawbacks.

Lingle, glad to know that it's not just me who's wanted to smack other children before.

I like the idea of being a cool mummy. Would require lots of work on my self-esteem to think of myself as cool, and that's got to be a good thing. I've been pretty low with depression over the past few years and haven't wanted to do anything nice for myself, so maybe this is the time to change that.

moondog Tue 08-Sep-09 15:38:37

Primrose, that's sad to hear.
Hope you can get yourself feeling better and thinking more of yourself.
The putative pet might even help you with that one? smile

In my experience, what other kids envy is energetic jolly patient parents woh make time for their kids, so anything you do that shows that is good (eg building stuff, outdoor games, flying kites, cooking outside, camping, patience with board games or big art projects).

Glad you understand what i said. I didn't mean it in an unkin way. I know it is so hard sometimes.

lingle Tue 08-Sep-09 16:59:43

I already think you're a cool mummy Primrose smile

PrimroseHall Thu 10-Sep-09 03:16:56

Thanks both of you. It is good to connect again.

Moondog, I knew you weren't being unkind about the school situation. Up until DS was ready for school I was adamant that he would go to the nearest primary, regardless of SATs results and league tables. It wasn't that I didn't care about his education, I just assumed that he'd be able to function at the same level as our neighbours children when the time came, and I regarded social inclusion higher than education. I was absolutely deluded! He was non-verbal and still in nappies when he was supposed to start nursery, and so I delayed him going. Then I chose a 'softer' school, just a bit further away from the one that he should have gone to by virtue of my working class principles.

I coped with the lack of party invites and play dates because it wasn't really in my face that DS wasn't being included. His academic progress did worry me, but up until year 2 this was explained as a result of his language delay and I was assured that he wasn't so behind that he couldn't catch up.

Everything went to pot in year 2 and it became unbearable for all 3 of us. His new teacher had grave concerns about his educational progress, but wouldn't address his needs. He had no friends and it was so painful to watch him standing alone in the playground in the morning. I always hoped that he'd wait with me but he never did. He knew that he was being rejected but he was clearly optimistic that one day he'd be allowed to join the others. It was just dreadful to watch him, he was so vulnerable.

I know I took the easy option by removing him from school. It was as much for my mental health as it was for his self-esteem. Educationally, he's making progress, and his behaviour has really improved. Socially though, he's stuck. I don't know what to do for the best. I'd rather that DS opted out of mainstream life if he's never going to be able to cope with it, but I don't want to inhibit his social development by taking away his opportunities. I wrestle with this all the time, but I'm not really looking for an answer on here, I'm just releasing some of the pressure.

Thanks for the good suggestions Moondog. I've already committed myself to camping next year (God help me). Board games require a lot of patience and faked enthusiasm IME, but I do force myself and DS doesn't notice that I'm not as eager as him. It's the outdoor games that I really need to master. It's not something that I want to admit, but I've been trying to opt out of situations where I might have to hear nasty comments directed at DS. I know I need to rectify that, in order to help him, but also to stop giving off negative vibes about social situations.

Lingle, I assure you I'm not cool, but thank you very much anyway. If I can manage to convince others that I'm cool, even if it is just over an internet connection, then it's a good start smile

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