To think posters should stop telling concerned parents their child doesn’t have SEN

[GoodnightAdeline]

…when it’s quite clear there is a good chance they do?

A handful of times recently I’ve seen threads by parents concerned their child (usually age 1-2) has no understanding or speech, and displays a range of behaviours indicative of autism or another type of SEN.

Posters have responded ‘they sound totally normal’ or ‘my niece/nephew didn’t speak until they were 4 and they’re a doctor/lawyer’.

On one such thread the parent returned several years later to confirm her child does indeed have high level SEN, and how upset she felt that she was told it was all in her head by well meaning posters.

I will of course caveat by saying some of these children sound totally typical and their parents are probably have a touch of milestone anxiety. But AIBU to feel exasperated when posters rush to falsely reassure parents when their child clearly isn’t developing typically?

My DSs difficuties were down played. Being told by friends ‘it’s because he’s a boy’ or ‘my newphew is worse and his parents are struggling to get a diagnosis’.

It was so unhelpful. If as a parent your instincts are saying somethings not right then seek help from professionals.

Totally agree.

This is a parenting website not a medical one. There may be people on here who say they have medical degrees but what proof is there?

Never trust anything medically or legally on a forum page. Always seek professional people.

To be fair I also used to comment on threads “Sounds like my son, normal to me’

both kids went on to be diagnosed with sen! In spite of all professionals involved saying my kids were NT.

I agree. I knew there was a strong chance my son was autistic and well meaning friends would say ohh he's too young to label. HV sent me to the BBC website to learn how to play people games with him (🙄🙄) . It really diminished what I was experiencing which was complex and multi faceted. My son is 5 and non verbal with significant challenges. He hasn't "grown out" of it.

I suppose the difficult thing is that the normal range is huge and by itself, most symptoms aren’t usually something to indicate sen; it’s just when there are lots of them.

Some parents will also see things as normal because it’s what they did or their child did/does without realising they and/or their own child has sen.

Well, not to be rude but I wouldn't come to MN for any kind of psychological or medical diagnosis- its not some random online stranger's responsibility to diagnose a child so how on earth can anyone then feel "upset" about it afterwards. It's fine to ask opinions but to get actually upset that online strangers didnt get your diagnosis right is frankly, utterly ridiculous.

Unfortunately the person telling me my DD is 'normal' is my DH (her dad) 😭 so having to push for assessments myself and we can't get on the same page when it comes to parenting as he doesn't see that she needs parenting differently to our 2 other DC

OK, but the other side of that is when my DS was 2 and barely talking, it wasn't an indication of anything, and I needed to hear that.

Of course the things that were indicators of his dyspraxia (having to be taught to put on his own trousers, unable to feed himself at 3) I totally missed, thinking they were just his quirks - although still the OT wouldn't diagnose him at 5 (although did work with us with therapy), because it was too early for an official diagnosis.

Mumsnet is not a replacement for a proper assessment. People ask because they are looking for similar experiences. There are more children “diagnosed” on this site than people who say not to worry.

If you think there is an issue with your child then you need to look for help with professionals.

You are being a bit unreasonable

I agree but equally it does work the other way: you get posters saying that their child has sailed through the 2/3/4 year checks and no concerns raised at school or nursery but they must have autism because of some arbitrary detail and why haven’t you seen your GP yet OP

I do remember the HV telling us his pincer movement was a problem - when I knew his pincer grip was actually pretty good - he just didn't want to eat raisins (didn't like them) out of her hand (didn't approve of food sharing/strangers touching his food with bare hands)...

A HV told me my son wouldn't make it to 'normal' school.
He was two.
He sailed through school and has a masters degree. He works in international relations.

He's absolutely fine.

Diagnosing pre school children is incredibly difficult, which is why professionals are reluctant to diagnose before 7.
And yes, I have a post graduate qualification in SEN.

Yabu.

People asking on mn aren’t asking qualified professionals. They are asking member of the public for their opinions. Opinions are based on your own experiences.

If you have experienced similar behaviour and it wasn’t autism, your opinion is a valid as people saying it is.

You use an example of someone coming back and confirming it was autism. However, that’s one example. How many people have been told it sounds like their child probably does have autism but doesn’t? We don’t know. One case of someone coming back proves nothing.

My experience is that posters here are very likely to suggest it very quickly. Rather than say it’s not.

I agree, pisses me off so much. Especially the “My uncle’s brother’s friend’s wife didn’t speak until she was 5 and now is a barrister” stories. Maybe it’s true but mostly likely hugely exaggerated. And very unlikely to be true for the vast majority of children with no understanding/ use of gesture etc!

I’ve had people telling me my son is fine ever since I raised concerns at 11 months (he wasn’t babbling). Guess what, at 26 months he has only 5 words, a massive delay! He can’t repeat words or even single sounds with any degree of accuracy and SALT are now considering a Apraxia of Speech diagnosis.

There seems to be a strange dichotomy by which SEN is suggested for very normal and isolated behaviours in slightly older verbal non-delayed children (tantrums, talking too much, being a messy eater) yet not when a child isn’t speaking at 3 or can’t sit up by 12 months.

I appreciate what posters are saying about this not being a medical forum but I’m talking about cases where it is very obvious there is something atypical going on, yet posters rush to tell the OP their child is fine because they want to reassure them.

In practical terms people will seek advice from other people online and I just think posters need to remember discouraging people from seeking help for their children because they want to reassure them isn’t helpful.

I've only seen the opposite so far -which is reassuring. I am always saying sounds like autism! I expected more people would be annoyed at this than the downplaying.

The frustration really is out there in real life - so many of us are fobbed off, gaslit, told be so called professionals that it's totally normal or something to do with your home life, youre over worrying etc. Many of us have to deal with partners or ex partners also downplaying things, gaslighting etc.

I believe strongly that other parents of SEN kids are often the best to advise. Better than any teacher to be quite honest, better than any GP, any health visitor also. If I listened to almost every person fobbing me off, we'd have got nowhere. Fobbing off was so severe in our case that request for assessing was refused. Had to pay for an assessment.

Yes professionals and you. The best people to speak to. My dd use to walk around on tiptoes and I was asked if I was worried. Luckily I wasn’t! I get more annoyed with the- have you considered he/she is autistic.

This is not the place to be diagnosed. It’s for chatter regarding other people and their uncles, brothers, friends, wife!

Yes, it is always best to speak to the professionals. But when everyone jumps on saying “it’s fine, totally normal” it could lead to the poster not contacting the professionals and so their child not getting the early intervention needed.

It is always better safe than sorry, and if, by the time your child is top of the waiting list to see SALT/ OT/ EP etc they no longer need the help then that’s great and you can cancel the appointment.

I also find that when the poster is concerned about SEN everyone says “your child sounds normal to me.”

When they are concerned about a behaviour their child is doing, massive meltdowns, not sleeping, hitting other children, covering ears at loud noises etc, then all posters jump on to suggest SEN, even if their is no mention of any other problems in the OP.

The contrast is quite extraordinary.

I had this in real life too, OP. In that context it was gaslighting - I struggled on for over 10 years being told my expectations were the problem, nearly brought me to my knees. I have a good relationship with my child now but memories of childhood are very painful.

It makes no sense to come to a forum and expect posters to either confirm or dismiss your fears. Nobody here is qualified to diagnose anybody and quite honestly, if you take what posters tell you is medical advice then you get what you deserve. The same as posters trying to pull you into their 'tribe'. Utterly pointless and so many threads are full of confirmation bias; it helps nobody.

Always see a professional. Always. You'll get a diagnosis, one way or the other, along with the explanations and support needed.#

I hope you are able to access what you need and get reassurance if you need it.

I was a young mother with no family and comments like these made me feel so rubbish like i couldn’t cope with “normal” childhood behaviour. Everyone (friends, family, even teachers) said “oh this is what kids are like” so i ploughed through trying every bloody technique, trotting off to every bloody parenting course.

Turns out ds was autistic and wasnt dx until he was violent, mentally ill and self harming age 12. Also turns out that also my youngest son, partner and I myself are also neuro diverse

I do think people should be careful of being too confident in telling someone there is no issue when they really can’t know that. However I think in most cases it is just people giving their experience and opinions and it should be taken just as that.Parents post I imagine as they’re worried and even if they’ve contacted the relevant people it’s often just a waiting game until they reach a certain age.

Completely agree - the vast majority have no medical knowledge or training and know absolutely nothing about the child apart from what is written on here.