"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?

You're not being unreasonable, no. People often try to help others but are misguided in how they approach the problem. This, teamed with a "Well, Timmy had a similar problem and he's just fine and dandy now!" attitude, often leads to those with no professional knowledge whatsoever giving false hope or additional worry to the very people they think they're reassuring.

It's tremendously sad.

That makes sense, I guessed itr would be along those lines but couldn't quite get my brain to go that far! You're right that she would want to ask you a million and one questions.

It's nice that you are thinking of her though, it's very sad. I hope she finds the support she needs.

oh, this is so infuriating.

I knoew htere was something not typical about dd1 from around 15 months (well, probably earlier, actually, but definitely form then)

I can recall 2 people who actually listened to what I had to say, rather than placating me, and, as oyu say, telling me anecdotes to shut me up and ease their discomfort.

I didn't need reassuring.

It made me feel as htough I was mad, tbh. that I was the onyl one who could see anythig wrong. that there must be something wrong with me, because I couldn't just appreciate the lovely, charming little girl I had - i had to keep digging and pushing and finding something "wrong"

I went through 3 different health visitors beofre I found one who woudl listen. she had to stop me half way through my (by then) rant, listing all the things I thought were not right. she stopped me because she listened, heard what I was saying and was happy to get the ball rolling form that.

and the only other person who listened was the coordinator of a toddler group. a lovely elderly lady, who I thought would be the pits, tbh. so I took the time the first week to talk to her, and explain that dd1 (pre-dx) was different. and not doing so well. and wouldn't understand.

and she smiled, and said "well, we're not all the same, are we? we'll all just have to learn about each other"

but otherwise? just empty words. lots of "she'll be ok", "bet she's a late bloomer", "look, she's clever really, she told me the name of X - you'll see, she'll sit the grammar school test when the time comes" (wtf? she was 2! and severely autistic )

it made my life very lonely, because it made it seem as thugh no one cared. they didn't want ot listen, they just wanted ot get on with their cosy little lives.

People are probably just trying to be nice and cheer her up. So long as no one says to not continue with the professionals it's not that damaging surely? Sad that she can't properly express her worry and sadness to them but people at stay and play are not likely to know what to say for the best and it is pointless to be angry with them, they don't have the benefit of your experience - I'm sure you could at least point her in the direction of support groups and charities where she can get help - even the specialised forum on here for instance.

Oh, and I do have a relative who hardly uttered a word before age 6 and in the end went to a top uni and got a PhD in maths and is very happy (although maybe they are aspie, I don't know)so it isn't some urban myth.

You could tell her working that when she finds a support group or someone in the same situation she will find lots of people have had to grit their teeth and listen to the same nonsense. It can become a bonding thing!

She could try and amuse herself by counting the numbers of cousin's uncle's dogs who have talked late and are now astrophysicists. I reckon I'm onto about 35 by now.

eurostar - it is damaging because it is isolating.

I didn't want answers. I didn't want anythign form the people around me, other than to listen.

I certianly didn't want telling (which, essentially is what htey were doing) that it would all blow over and htat I was worrying about nothing.

nothing? no, just my daughter's (pfb!) life. and her health and happiness. jsut nothing to worry about.

it is so insensitive it is unbelievable.

Just feeling the need to point out that my aspie ds was saying about 3 words clearly by hid 1st birthday, sometimes it works the other way. Only saying.

And from that you can conclude that people will always try to add their own personal perspective/experience on things that are even a little unusual. Hearing other experiences on here has made me see that not all children with AS will present in the same, or even a vaguely simelar way. I thought I knew all about it, but obviously I only really know about my own ds.

Oh dear God in heaven.

Ds1 did not speak until he was 4,truly he said zip....im a nursery nurse I used to speakn for him - he went to playgroup and would take little notes with stuff hed done ...' I have been to Blackpool,I bought rock for us to share' .....it was so sad ,nobody would listen- I used to go to the Drs and say please investigate please look at this and show her my baby medical book in the end (she was my mils mate) she took the book from me locked it away and im not sure she gave it me back .

However ds did speak .....eventually,hes 18 in August and has been accepted at 5 unis to read law.

I remember being all prepared to insist to my HV that DD be referred for an assessment at her two year check. And then crying when she suggested it without prompting. First person who agreed with me that it wasn't right.

Eurostar, it's certainly not an "urban myth" that some people talk later than others, but after about 3.5, it would be very unlikely for a child who was non-verbal (and communicating and interacting at a prelinguistic level) to have a "normal" prognosis.

There are many people who have high functioning Autistic Spectrum Conditions who have higher-level degrees who may have spoken later in childhood. I know nothing about your cousin but having a PhD is not necessarily an indicator that a person has "normal" language and communication as an adult.

There is also the fact that a great many of these "late talkers" that you hear about were actually quiet kids vs "non talkers". My aunt spoke very little until she was 4 but when I quizzed my grandmother about it when I was training, she had said single words at around about 18 months and joined words at 2. This is quite a typical "late blooming" pattern as opposed to the type that people share about children not speaking going to school. She was the third child of four but five years younger than her nearest sibling and spent a lot of time playing alone.

In the overwhelming majority of cases, a total lack of speech after 3.5 (and even more so, a lack of communication) is associated with lifelong disability.

Well it's communication that's key isn't it. DS2 was a late talker (speech came in overnight at 3 - until then I was having his assessed for verbal dyspraxa- was too young to be sure but it was on the cards) but he was communicating without problem. DS1 on the other hand lost the sounds and early words he had and wasn't able to use a point to communicate (although was sociable, friendly and affectionate).

I used to get told that it was rude to point, so why did I want him to point.

At which stage I would go home and cry.

Actually I was lucky I had one friend who listened, always, even though in the early days she didn't agree with me that there was a problem. As soon as she did she told me that she could see what I was saying, and although she hadn't been able to see it before she could now. The first person. I was so grateful, and still am now. It's more than 10 years ago and I remember that moment clearly. One of those frozen in time ones.

Meant to say so I knew ds3 was fine, despite lack of speech as his communication was so good.

I've done this recently, shared anecdotes of a relative who did not speak till he was 4yo etc, with a close friend who seemed to be in denial about her non-verbal 3yo. I thought it was becoming more likely that he needed more support and help, I wanted to sugar the pill of urging her to seek a referral, and get the ball rolling on SALT etc. Trying to say that all may be well, but it is time to get expert opinion and help on this.

I think it worked, she got a referral, and is certainly still speaking to me.

That's a little different though, Unwind. In the case I'm talking about, I really do feel it's to get her to shut up .

it is different, unwind. and lovely of you to care and try to help your friend.

I used ot sit with friends, chatting about babies, as you do at a toddler group.

and (eventually, if w ewere on the subject!) list what I thought might be an issue with dd1.

like not talking.
or pointing.
or being interested in much.
like the fact that at not much more than a baby (13/14 months), she owuld sit all day and scratch the wall. that's it, until her fingers bled.

and htey would look embarrassed, and say "but isn't she beautiful?" or some similar crappy platitude.

which was so far form the point tha tit was laughable. and it made me die inside. because maybe it was me that was wrong - all the usual shitty mother's guilt. maybe they just didn't want ot point out what a crap mum I must be if I couldn't even get my baby to play wiht me. after all, it couldn't be anything wrong wiht her, as no one agreed with me that these things were worrying.

and after a while I stopped mentioning it, as everyone kept telling me I was worrying too much. and that she owudl catch up (would help if she bloody started the race, never mind catching up!). and that we clearly had a strong bond (dd1 was very sociable, if she could have all my attention. blanked anyone else), and that it owuld be ok.

which in a way, of course, it is. but not the ok they meant.

people do it for different reasons though, some are trying to be nice and don't know anything about it, some are uncomfortable and some do know about it but don't want to say - yep there's something glaringly wrong with your child

combine all that and you're left with very few people who will actually be able to have a conversation about it

it's not a nice situation to be in, but it's fairly understandable really

I feel really hurt when friends shut me up in that way. having a child with SN is overwhelming and dominates your every thought at some points. On those occasions it really helps for someone to validate your emotions by showing and interest in them and what life is like when you have to deal with your child's needs and fighting to get them met.

I'm sure that people who do that are generally not well-meaning but deliberately cutting the subject dead so they can talk about something more comfortable.

OP could you neglect to mention your profession and just let her bend your ear about how she is feeling?

Sorry, so many typos. I am tired!

It's the same as people crossing the road to avoid the recently bereaved. I make a point of going out of my way to talk to someone recently bereaved if I bump into them - am staggered by the number of people who have said I;m the first not to run in the opposite direction . Not that I constantly bump into people who are recently bereaved, but so called friends avoiding them out of embarrassment or fear of saying the wrong thing seems to be remarkably common.

Tabulahrasa, I know what you're saying, but I don't feel that feelings of discomfort or "not knowing what to say" excuse people from trying to engage in a conversation. To me, it's just part of adult life.

I met a mum recently at something - I'd never met her before. It came up that she had recently had the most horrendous bereavement imaginable: her preschool aged dc had died.

I think, like most people with little experience of bereavement, I felt great discomfort at this revelation. I probably looked a bit awkward, looked away etc. But I said I was really sorry to hear of her loss and asked her what her son's name was and how old he had been.. and then I shut up and listened and just let her talk.

It's not because I did some crappy "listening skills" thing in uni that I could do this, or even that I've seen parents going through the pain of diagnosis. I think it's because I grew up in a small rural community in Ireland where people used to find it pretty easy to talk about death and know what to say. Not so much so about mental health or disability maybe, but about death. So I know you just pull yourself together and you just LISTEN and nod and ask about the person and how they're coping and listen to details of the death if that's what the other person wants to share.

I think the ability to have conversations about these things is a dying art in the Ireland I grew up in, and many people of my age group who live(d) in urban areas might struggle.. but I think it's really sad that we can't make a few minutes for other people's pain when we never know when we might walk in their shoes. It really isn't so hard just to listen.. and even if and when it is, you just have to get on with it and show some grace and maturity, surely? I know we're all supposed to "understand" everyone these days, never judge unless we've been in that person's shoes etc.. but I do think that listening to a person in distress is a mark of common decency and humanity and that it's unfortunate that it's seen as "understandable" that people will give in to their discomfort and shy away from the tough stuff. Even with people they hardly know.

I digress, a bit.. but I have been thinking about this recently in general and your post reminded me of it.

X-posted saintlyjimjams!

Also, if you avoid discussing these things, at what point do you learn how to? When you have a bereavement/difficulty in your own life? Does that mean only the bereaved and suffering can comfort eachother? It seems adolescent to me that someone would cross the road to avoid having to say something to someone because they "don't know what to say". I remember that feeling as a teen with acquaintances, but I don't think there's a justification for carrying it through to your adult life?

My friend's son was in this position and is now diagnosed with ASD and learning difficulties. i think I was probably one of the well meaning ones who said all the wrong things. i did try to listen lots as well, and now if it came up again I probably would say different things, but she was so worried about the worst case scenario, I think i tried to paint other options, when actually I should have shut up and listened.

It is really hard to know what is the best thing to do and say, especially if you have no experience of SEN

I don't know, I'm a talker, lol

I just find that's the reaction I got when my son first had SALT and was assessed for autism - I have been in the, well I can see there's something glaringly different about your child, but I don't want to mention it until I'm sure you're ready for it situation

I find the bereavement one very odd, I'd rather say, I don't know what to say, than say nothing - at least that's not ignoring it

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 (not a bereavement though).

Not to shut the person up - to make them feel better and offer hope and maybe because I'd feel a bit awkward and not know what to say.

What should I do/say? I'm Irish so find it hard to say nothing in case someone thinks I'm not interested.