"Well my husband's brother's wife's son didn't talk til he was 4 so don't worry!"

[working9while5]

An acquaintance (friend of a friend) has a three and a half year old and has recently had a multidisciplinary assessment. The professionals have told her that her child is communicating and interacting like a nine month old and they are investigating a learning disability/autism. She is understandably shocked and distressed at this news.

Many of the people we know in common seem to have been very dismissive of the assessment both to her face and when speaking about it, with seemingly everyone having a story of a long-lost relatives who "chose" not to talk until they were at school. These late bloomers invariably all have Master's degrees and high earning jobs now .

I am a Speech and Language Therapist and I know that there are "late bloomers". However, I also know that what this mum has been told is that her child is interacting and communicating like a baby when she is three and a half. I know that this is not good.

I am filled with a sort of rage when I hear these "reassuring" stories because they are so dismissive of the mum who wants to share her distress - although I don't see her regularly, I've come across her at a few Stay and Play sessions in recent weeks where she wants to talk to everyone about it and let it al out. I've watched these stories being told to shut her up, really. It is very disheartening?

Am I unreasonable to be so frustrated? To wish people could be reassuring without denying? After all, if someone has cancer, people might share stories of how someone recovered but they wouldn't endlessly tell stories about how a diagnosis was wrong, would they? Perhaps it's not the same thing?

DH and I have friends whose ds is in between our Ds1 and Ds2's age and they are fantastic. No pitying looks. No "oh he'll talk when he's ready for Ds2" or "oh we've all got our quirks" for Ds1. They just accept the lads as they are.
Going to a family gathering last summer though and listening to people tell us about their son or brother or cousin or goldfish who didn't talk until they were 5 and now they were fine was a bit grating, especially as Ds2 (who was the subject of the apparent reassurance) was not only not speaking, but was taking bog all interest in his surroundings and ignoring all around him whilst I was being assured that he would doubtless start reciting the role of Mephistopheles in Doctor Faustus by the end of the first term at school .

I have this problem too. A disant cousin has a child on the autistic spectrum. Mum thinks his behaviour is part of a natural developmental stage and is in denial. Well meaning people keep feeding her similar but different stories. Really his needs need to be properly assesed though.

I understand this well, when my ds was little many well meaning people would come out with, such and such never spoke till he was 5 and is fine now. Or, he's a boy,he'll catch up.
I think in alot of cases it is just people trying to be hopefull.
My ds is 9 now, he was completely non verbal till June of last year and all of a sudden started talking !
We had all but given up that he would ever speak, it's life changing for him and us.
Don't get me wrong, he's still a a massive handful and probably always will be.
BUT, I know that his story is doing the rounds atm and parents of other children who have severe autism are given a small ammount of hope for the future.

My 4year old son is delayed with his speech and language and my concerns were pushed to the side by friends and family and I was told I was overreacting which stopped me from speaking to a professional sooner until it had a big impact on his behaviour at nursery, I wish I hadn't listened to everyone else and just seeked a professional when I first had doubts, even though they were only trying to make me feel better I was looking for support and advice and I felt like I wasn't being taken seriously so maybe it might help your friend for her issues to be taken seriously by another mum who understands rather than her concerns pushed to the side even if it is unintentional.

Oh my exMIL was a nightmare with this. Even after DS's diagnosis she'd be constantly banging out stories like that....

Donttry - I just do the same as working and ask questions then listen. And if it's death then use the name of the person who has died.

I work on the assumption that the very worst thing that can happen has happened so providing I don't tell someone how they should feel or brush aside concerns then I can't say anything wrong as they're going through he'll already.

So if someone has died I wilk ask how someone other than the person I am talking to is coping (for example if a child and unfortunately I do know a few people who have cost children then I might ask about a sibling). I find that there never is much to say but that people often want to talk (especially if everyone else is running in the other direction from them). If it's someone going through dx I ask about forthcoming appointments etc - again it's just a neutral opening which they can then use if they want.

People still do it to me know. I'll say ds1 needs to have a medical procedure - dunno so something simple like a blood test or something and I'll get stories about how dreadful all chikdren are. Well sorry but getting blood from an NT child is nothing like getting blood from a severely autistic non verbal very strong 12 year old. although I guess I concede that preople may simply have not understanding of how difficult it is to carry out even simple medical procedures on people with learning disabilities.

YANBU
Why do people do it? It doesnt make me feel better, it makes me feel like my DS's problems are being dismissed.

Had this throughout my childhood and had to listen to everyone's pet theories it stopped my parents acting when there were problems and meat I and a sibling were not diagnosed till adults with dyslexia and dsyraxia.

Currently have a few concerns about our DS so are approaching the correct people for input and possibly getting him assessed. A friend overheard one conversation and spent most of yesterday telling me we are wrong to get him checked and advanced quite a few mad theories and a lot that blamed us his parents in some way. Wish I had said what I thought -.

Predictably her own parenting and her DC behaviour is less than stellar. Surely people should encourage at least assessment by professionals before they bang on about how everything is fine.

I think people do this all the time. At the weekend went out to a small club with some friends. A friend who is 97% deaf said she wouldn't come as she can't hear anything and lip reading is too difficult in that environment. Cue friends who chimed in with - oh we find it so hard to hear anyone there as well. Its not the same!

Or another friend who has terminal cancer at a very young age. She keps getting told of miracle cures. This friend has enormous secondary tumours and is in a lot of pain. She is going to die soon. A miracle cure may have worked for x, but it is far too late for her and not helpful.

I think people do this for 2 reasons.

1. They think they are genuinely reassuring the person that it may not turn out to be as bad as they fear. Of course what it really does is shut the person up, but it is said with the best of intentions. And I admit if I don't think about my response, I find myself automatically going into this mode.

1. The person can't cope or doesn't want to hear about someone else's problems. I admit I shut up someone with MS - an acquaintance rather than friend - who wanted to talk about it. I felt bad doing it, but because of MS in family, this was just too painful to talk about. I wish I had just been honest with that person. I think this is why my friend with cancer gets the reaction she does.

Hopefully true friends won't do this. But this is why support groups for people going through the same thing can be enormously helpful.

DS1 has severe learning disabilities and it was quite obvious he had global developmental delay from birth. The day he also got diagnosed completely blind (an inaccurate diagnosis as it turns out), my mother and my sister both pointed out cheerfully that David Blunkett is blind and look at him - he's a cabinet minister!

As well as avoiding any sort of sad or difficult feelings for themselves, I think that they were just trying to make me feel better. Of course it didn't work, but they meant well.

Nowadays, I tend to look more kindly on people who are crap at this sort of thing. It used to make me very bitter indeed. One day, they will be in a horrible situation and people will spout pacifying, dismissive nonsense at them - it comes to us all.

This is a great thread OP, something that really needed saying imvho.

Ds is almost 8 now and been diagnosed for over two years and even now family members are still in denial and can't see what all the fuss is about to the point where my FIL snorts or smirks if I talk about any issues ds is having. Ds is fully statemented with full time one to one, OT input, SALT input and so on. He was diagnosed within 6 months, which I know is very fast from reading experiences on here. How the fark does everyone think I pulled the wool over the eyes of these professionals? When concerns were first raised, I went home, googled and knew straight away that he had it. Every single family member went straight into denial.

MIL: "Shimmery I have raised 5 kids and I know there is nothing wrong with that boy!"

My Mum: "He just marches to the beat of his own drum, thats all, can't expect all kids to be the same"

Dad/FIL "He is just being a BOY and a naughty one at that!"

and worst of all EX H "there is nothing wrong with him, he needs a bit more socialising because YOU didn't take him to play groups and anyway I think you WANT something to be wrong with him Shimmery so you can get attention for yourself!" and made me "promise" not to try to get him "labelled" for at least a year to "give him a chance" fcking asehole!

I remember the few months that I kept to my "promise" of just being in a daze and feeling desperate because I knew I should be moving things forward for ds but NO-ONE else thought there was a problem and some actually got aggressive with me whenever I tried to discuss it. I just felt so isolated and frightened. Why didn't someone read up on it and talk to me about it? That is what I would have done. But not one person did and I have quite a big family on both sides. All my support in the end came from outside the family, teachers, doctors etc. Even now no-one (except my Mum who is brilliant) likes to talk about it and if I ever remind ex of how awful he was about it he just denies it or justifies it.

It was a horrible, terrifying time and has probably damaged certain relationships forever. Someone said further up that people don't want it to interfere with there perfect lives and I think this is very true.

donttrythisathome
Oh god I'm probably one of the people who would look for a "positive" story too if someone said their child was not talking

I think there is a difference between being positive and being dismissive.

If my friend had said - well I do not hear the problem and but you are doing the right thing getting his speech check out early - that would have been positive. One of the parents at a sure start group I go to is in denial about her DC lack of speech she is surrounded by family saying it is normal so she is refusing the help offered to get the DC assessed. She is not being helped by those people as it clear there is a problem.

I hope I was supportive and positive with the friend whose DC walked very late. DC was thoroughly assessed prior to our friendship and I would remind my friend of that when she got upset but also remind her she was told she could go back late on if she was still concerned. I would also point of her DC was in the normal range though at the outer end as someone had to be and I would remind her of her DC progress - standing, cruising ect. Her DC was fine in the end and was just one of the late ones but I tried not to dismiss her concerns and would never have undermined her getting her DC checked out properly.

I also think being positive is different to wanting to fix thing. My mother possibly driven by guilt is always phoning up with miracle cures for my dyslexia and is very dismissive of our concerns about signs we notice in the DC.

I also think under the guise of people being helpful there is some blame apportioning going on - that it must be the parents/(mothers) fault some how. If you only done this - or if you tried that ect...

Actually I have been guilty of the bereavement thing.

For a close family friend I listened about the loss of her baby - premature birth few weeks further along in pregnancy than mine when I was listening. Not a conformable listen but I did it - as she wanted to talk in her house to me.

Did try and change topic with woman at a toddler group who had just had a still birth - was there her older toddler. Conversation had only started because another mother had asked where the baby was. I was pregnant and was having problem with the MW care I was receiving and medical incompetence had played a role in her babies death. I was trying to get away from my problems with poor care and spend some quality time and focus on my toddler. I was also not the only heavily pregnant person there and we all had no choice but to use that hospital and the staff there. So several of us wanted her to shut up and go away .

Oh I hate this too.

I understand it and I think it comes from a desire to comfort, a wish for the situation to be different and a burning wish to not talk about it any more.

The hardest bit is being forced into the position of convincing others that your child is 'wrong' - that feels like such a betrayal of your child. And then being forced to comfort someone because thecreality has upset them !

On mn I always try to be measure but the jolly

'don't be silly - my son flapped and didn't talk until he was nearly four but now you can't shut him up LOL"

Make me want to poke my own eyes out.

But if you try to suggest some investigation then the suggestion can become that you are pushing for there to be a problem. Has happened to me a couple of times recently.

I would stop replying were it not for the fact that somewhere behind the post is a child who could do with someone checking him/her out.

1. don't expect reassurance but not denial from people you don't know very well - most people have a tendency to try to put a positive spin on things in these casual settings.
2. get the release and understanding from close confidants who you can offload on and who will really understand what you are going through.

human nature is what it is i'm afraid and casual public interractions will never offer the same level of emotional engagement as private 1-2-1s or small group settings.

People often say what they've heard other people say in similar situations. I'm not sure how this can be changed, other than by example?

I spoke to someone the other day after his hundred year old mum had died and he started on with the 'she had a good innings' stuff, and I said 'doesn't make it any easier for you though'. He said it was making him angry that everyone kept saying she was old when he had still lost his mother. He went a bit tearful on me but I felt that I'd said the right thing to him.

Part of the problem as well is the pervasive daily mail mentality that the modern way is to diagnose 'naughtiness' or to diagnose new mothers with PND when all they have is a bit of sleep deprivation.

I have a child with SN similar to the OP. People do this to me all the time. I don't think they mean to do it. Most of the time they actually don't say anything at all if I mention the problem they just look dreadfully uncomfortable and change the subject. I don't blame them they just don't know what to say. I also have the family problem of totally ignoring the problem. It does make you feel very alone and slightly mad Thanks for posting OP

Besom, a friend of mine lost her elderly father not so long ago and everyone said to her about the good innings stuff. Like you, I said something along the lines of not making it any easier - she'd still lost her dad after all.

Another friend lost her baby at 22 weeks pregnant and some years later her dh died of cancer. I was amazed when she said people would cross the road rather than talk to her.

I had a mmc at 12 weeks and I got "well at least you already have two dc" from lots of people and even from one mum who'd had a mc herself "well at least you know you can get pregnant unlike I did as it as my mc was my first pregnancy". When we found out it was a dd (she had Turner's syndrome so it was evident she was a girl), a lot of people suddently became sympathetic because we have two ds's!!! People are strange sometimes.

It is a very common response to suggestions that there might be 'something wrong' with a child. I think the people who spout these kinds of stories / opinions are mainly well meaning, so best to bite lip.

When our son was being assessed for an ASC, we had pretty much the same thing. Some relatives still don't believe DS has AS (he has a diagnosis, a Statement of SEN and is attending a specialist ASC unit instead of MS school now...). Denial ain't justa river in Egypt and all that.

I used to feel quite outraged in a similar manner to you, OP, but now I let it wash over me.People are generally very ill informed about SEN like autism and other social communication conditions, unless they have been dircetly affected by it themselves.

I advise anyone going through any developmental issues with their child to avoid any mother and toddler group (except SN ones). It's like some sort of torture chamber. Often these poor mothers think they owe it to their child to go to these awful places, torture themselves by watching all the children doing the things they wish theirs was - and what's more - they're not even allowed to talk about their child because it makes others uncomfortable

Over the years quite a few people have been really grateful when I've said 'oh god don't go - unless you are getting something out of it, if it's making you feel miserable drop it'. Unfortunately well meaning health visitors etc sometimes recommend toddler groups etc as a way of encouraging development. Anyone with any knowledge of development will tell you that dumping a child with developmental issues in with a bunch of NT toddlers isn't going to do anything positive. It might not do any harm (so fine if the mum enjoys it keep going) but it's not going to lead to some sort of miraculous recovery.

Honestly the number of people I have met over the years who have tried week after week because they feel they 'should' then gone home week after week and cried. They just increase feelings of isolation in most cases.

If I had the time I would set up a local toddler group for families with kids with SN (for siblings as well, as I found with ds2 and ds3 being at higher risk of issues normal toddler groups made my teeth itch and brought back very bad memories). The idea would just be somewhere where people can talk about concerns if they want to - whatever those were - without feeling like the two headed freak or the embarrassment int the room. It wouldn't be to provide therapy or anything - just a regular toddler group, for mums to chat - and to be actually able to chat to people who weren't going to change the subject immediately.

Oh saintly, there was a time I was a clueless young speech therapist who probably told people to go to toddler groups to socialise with others .

Idiot. I had no clue and I look back and often wonder how some parents bit their tongue with me.

I know it's a learning curve, I know that people have different foundations in terms of knowledge and experience etc and I know that when you do talk to someone who is suffering without that experience base, you will often get it wrong. I had a friend whose father committed suicide when I was younger and though I think I did the "right" things initially, as her grief went on, I was totally ham-fisted in my approach to it. I said the whole "time heals" thing. Gah . I also did the usual thing people do of texting and calling for the first while and then I sort of vanished as I thought her lack of response meant she didn't want to talk to me. I have learned from being on here (and getting older, I guess) that these were silly things to do, and on reflection, it is so obvious .

Life is not like a soap opera where you have to pull a nice performance out of the bag for a week and then life breezes on again . It's murky, it's tough and no, unless you've been there you don't have a clue... and when you find your "there", others won't have a clue. I guess we're all just bit players in the films of eachother's lives - and to a certain extent, we are sometimes guinea pigs and sometimes experimenters.

I just think it's good to try. You might get it wrong, but you might learn something for the next time.. but if you don't, you get stuck in that adolescent fumbling stage and that's a bit of a shame, I think.

I think you are right OP. Ime, people that are suffering a berevement or are going through things do to with SN usually appreciate the effort made. It's got to be better to say the wrong thing with the best of intentions than not bother at all. Unfortunately, that does mean that people will have to endure listening to things from others that they don't want to hear, but better that than nothing at all.

Aaaah I feel so bad for her.

Perhaps you could subtley stick up for her in what she is saying? You don't have to be the professional in the stiuation though, just repeat what she has said.

So when someone says the whole "well my neice didn't talk til she was 12 and is now . . . etc" then you could say that situation is different as this womans child is communicating and interacting like a nine month old and has possible learning difficulties or autism, according to the people who assessed her and that it isn't the same situation at all. Perhaps take the opportunity to say that you know people mean well but that you think this lady would like to be able to talk about what she is going through and how it concerns her without being dismissed.

Sometimes it can be difficult for precisely the opposite reasons. A little boy who I knew slightly clearly had a severe communication disorder. My BIL (who knew the parents and the boy well) wanted me and my DH to have a chat with his parents about the speech delay to show that things will turn out fine - my three girls have all had severe speech delays, but have no communication issues.

DH and I felt very uncomfortable because we didn't want to say that whilst our DDs had had a speech delay, they had no communication difficulties - so were not comparable. We ended up using platitudes - and with hindsight, as the parents were (understandably) in denial at the time - I still don't see what would have been the right thing to say.

If people are in denial (or not willing to talk about it to everyone - which can also be the case) I just say 'oh you may as well get his/her name down for an assessment, the waiting lists are really long and you can always cancel' Which is true.

Someone being in denial and needing a push is very different from someone desperately worried and with no-one to talk to. Particularly because it is highly likely that the child's father won't yet be on board and the grandparents will be treating the concerned mother like a pariah for daring to suggest something might be wrong. It's a very lonely time - a time when you really need someone to listen to you and instead you just end up with people too uncomfortable to talk to you.