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?

Agreed.

Nobody reasonable thinks they diagnose anything anonymously online. Neither does anybody reasonable think they can get a diagnosis anonymously online either. Surely?

I realised my child was Autistic thanks to speaking to other mums online. The GP was suggesting it was just me over worrying.
I learnt I had EDS and two other medical conditions thanks to the expertise of others online. The doctor kept saying I didn't have these conditions.
I read some brilliant posts on here that are incredibly aware and quite frankly, I'd listen to another mum or fellow ' patient ' over professionals any day.

I think saying ' this sounds like x,y,z' is not a negative thing. Most people on here instinctively know their own answers anyway. It can take a long time to see what you already know.

This 100%. My favourite line is 'see a professional'. I can guarantee you that the only professional worth seeing is an accredited assessor, who you won't get to see for 5 years unless you pay. I would go with the views and advice of experienced parents on this any day over any ' professional' of the ilk - school,health worker, HP, social services. You only have to scratch the surface to see how little these professionals in general actually know. I feel exactly the same about medical conditions. I'd go to those experienced in living with and dealing with certain conditions again than any so called professional - unless one has the money to pay for the CPU tries leading experts on the subject.

Apologies Maria- you didn't ask and I told you without you requesting that so I understand your point there. 🙏

Autism is a spectrum and alot of behaviours are indicative of behaviours toddlers display unless extreme they don't usually get diagnosed until later when they are older and you can see the difference between their peers. I found this with my child, he was under cahms aged 3/4 was borderline and didn't meet the criteria, however aged 7 years old he's been given his diagnosis. It became very evident as he got older that he struggles to self regulate but he is high functioning. This is why is so hard to get children diagnosed earlier unless there are not high functioning, my son went under the radar until we requested another review under the neuro team.

Ok to caveat -i am not diagnosing a single thing I promise 😆.

The dizziness - so POTS MIGHT explain it. It is a co morbid of Ehlers Danlos/ hypermobility. Every person I know who has EDS has POTS too due to the elasticity of blood vessels. I had no idea ref the autism link until it became so apparent on the online groups and then I read into it more. If you are interested there is a wealth of information online.

We usually have to help ourselves because the medical profession just does not understand it, they are very poor at diagnosing. ( Ive had to pay for all of it to be tested).

People online - on specialist groups, will I guarantee know more about this than your GP or probably your rheumatologist.

It's just worth looking into online is all I'm saying ☺️. You can do things yourself to improve the POTS symptoms.

I agree

professionals are reluctant to diagnose before 7.

This is nonsense, my Step DC was diagnosed at 4! I know because I was there... My friend's DS was diagnosed at 2. Please stop spreading false information

I am a bit sick of this labelling of children from an early age. Obviously if there are signs of serious delays that's different.

I will look into it more though I personally don't get dizzy thing kids say they do though have other indicators as do my siblings and DMum though it may come from DH and his family (we suspect ND in some members but unlike my family no formal diagnoses)

With waiting lists so long, and even just geeting to a GP in the first place often being a battle, you want to have a pretty strong case to be taken seriously.

It took me years to join the dots on DS1's quirks here and delays there. The clincher was when he was 7 and had some major multi-hour meltdowns which could clearly no longer be put down to the terrible twos (10m-5y). I voiced my concerns about a range of factors in the SNs section of MN and between that and a cousin recently being flagged up too helped make me feel like their was enough evidence to seek referal.

When he saw the consultant 18m later she was surprisingly unequivocal in her diagnosis.

He masks well and most, including school didn't recognise the extent of his traits when he was younger.

It's hard when you know something isn't right and standard advice doesn't help (or even aggravates)

When others post their concerns on MN, I'll say if they strike a chord from our experience. If they're clearly worried but not much there, I'll ask if there are other traits and write it down for future reference.

No one on MN is diagnosing, but it's easier to find experience here than in RL, and it's hard when people in RL are keen to gloss over issues.

I imagine the poster is thinking about all those cases where traits are not more obvious until they are older. I know I would never have got an assessment for my son at ages 2 and 4 because although very hyper, there weren't obvious Autistic traits in all settings.

For those who would have been diagnosed as Asperger's historically, I kind of agree with this point. I even got fobbed off for an assessment at age 9. We had to pay for it.

I’m only referring to cases where there are serious delays because I appreciate with milder symptoms there’s more grey areas and room for ‘they’ll catch up/they’re just a bit different’.

A child who can’t sit up at 11 months, or who can’t speak and doesn’t understand anything even their own name at 18 months, is very delayed yet I’ve seen so many posters try to convince the OP it’s fine and ‘they’re just lazy/working on something else/will do it in their own time’.

And some things you only realise with hindsight. DS has had what we now see were sensory issues from birth, but it's only because they've continued that we've been able to make that link.

I wish DS had been 'labelled' at an earlier age. Instead we had to wait until things deteriorated to the point he was refusing to attend school completely and I'd had two trips to A&E from injuries caused during meltdowns.