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?

I’ve not seen it on here but it happened so much to me in real life. People always say “oh little Bobby’s like that!” and “I’m sure it’s fine” and never want to keep listening. It just makes you feel shit like everything you’ve gone through means nothing.

It’s so so hard and I’m so sorry it took you so long to get a diagnosis 😓
Since knowing my child is autistic I’m no longer depressed. I’m not actually just shit.

Agreed so people request those opinions are just asking for trouble!

I had a "friend" group who repeatedly told me my DS (who had been diagnosed as autistic at four years old) definitely hadn't got SEN. It was bizarre -DS very clearly was autistic. I have no idea why they were so insistent or what the point of it was -it wasnt to try and comfort me for sure. It was clear it had been discussed behind my back. DS had an EHCP from primary age and has been at a SEN school where he is just finishing this year at 16 and on to college where he will get additional support. In other words, it wasn't me making up his SEN (why would I?!).
I'm not friends with them anymore! I've always wondered at the reason behind the weird denial!!

I’ve had this in real life. To be honest, with my eldest I gaslit myself, he was showing so many signs but did the ‘opposite’ at the key 2 year milestone - he fully caught up (in my eyes anyway). The he started school and the reality of autism came crashing in.

With my second, I simply knew he was autistic. Unfortunately by the time it was very apparent, we were in/just getting out of lockdown and many people (including dad) were trying to use the social isolation excuse. Took a good year in nursery for everyone to be on the same page really, but after the age of 4 only a couple of people dared say ‘just be positive, he’ll catch up, blah blah Einstein and all that shite’.

Despite having two children diagnosed, one parent obviously undiagnosed as a child, I’m still having a todo with some recognising what are (to me after 8 years of sen parenting) big loud ASD flags in the youngest. Even after all my very intense experiences and fighting for my other two, people still try and tell me that the youngest will simply grow out of insert ASD/ADHD trait here. I have perfected my fixed smile at this point….

I find this the opposite. Any and every behaviour out of line is diagnosed as some sort of SN.

Well SN/SEN is quite a large umbrella that isn’t just ASD/ADHD. It can be any diagnosed/undiagnosed difficulty that can cause a struggle, that leads to behaviour issues. When speaking about a child, additional needs can include anything from autism to physical disability to a trauma event.

These things are as often an isolated delay that corrects itself as they are a sign of SEN.

I just put reassurance a bit like you described on a thread, but with the important caveat that it's wise to seek all the professional help and advice available, but that there's also good reason to be optimistic.

I used to be an SEN specialist and I have a child with SEN (for that matter, my husband and I both have SEN). I really think that prepare for the worst (ie in such cases, fight for professional help), but hope for the best, is the most practical advice.

Totally agree here too. I asked about DD's speech delay in here years ago and was told repeatedly that everything was fine. She's got ASD, ADHD, ARFID & Dyslexia.

I wish someone had pointed me in the direction of seeking help.

I agree tbh

My eldest was very delayed as a toddler and I was obviously very concerned. I lost count of how many people trotted out that line: "they all get there in the end" and it drove me crazy. I work in a specialist school for children with autism, in a class of children who are extremely delayed and complex. They do not all get there in the end. Thankfully, I had enough knowledge and experience to know this, and listened to myself and my gut about my son. He's 9 now and was diagnosed with autism aged 5. He's come on so far and I do think a lot of that is down to early intervention and being aware quite early on that he needed different approaches than other children. Funnily enough, all the old doubters have gone quiet. Nobody questions his diagnosis these days. He's extremely bright in some areas but clearly autistic. What worries me is when parents without my prior knowledge/experience hear these empty platitudes about their children. They might just believe it, and delay seeking assessment and help for their child.

YANBU.

It’s something I see a lot, and something I experienced myself with both of my (autistic) kids.

What compels some people to gaslight others into believing that traits and behaviours associated with SEN are completely and utterly normal is beyond me.

It’s not about asking strangers for medical advice. Often it’s a case of having a gut feeling that something is up, and needing to speak with others who have walked that path.

Completely agree with all of this. I think a bit of reassurance is fine, but at the same time saying that it can't hurt to seek further guidance from professionals. My ex husband tried to deny that our boy had autism (he's one of the people who can see it clearly now) and I just used to say that he won't be diagnosed if he doesn't have it! I think it's fine to ask for other people's opinions, and also fine to seek more formal assessment if you are concerned.

I agree with this

There are more children “diagnosed” on this site than people who say not to worry.

and this.

It often concerns me on MN how often people "diagnose" children on here, and also go straight to "You should apply for an EHCP" at the first sign of any difficulty.

See a professional? Get a diagnosis? Are you for real? Have you tried to access services or even read any threads on here? FIVE years some parents are waiting...FIVE years.

Of all the things we deal with, please understand , ignorance is the worst.

I think it’s best to wait for any kind of diagnosis or discussion with a medic, as I have actually been in the opposite boat.

My DS has a speech delay (he is constantly progressing though) and not long after he had just turned 2, i hired a private speech therapist. She raised a concern of autism just because she saw him spin the wheels of a toy car (which i’ve never seen him do since). She then wrote it in her report which my childminder asked to see, who then jumped on the bandwagon that he must have autism and she really held him back because of it.

My son also loves numbers and counting (now aged 3) and when i mentioned this to a friend, she said ‘oh yeah that is an autism thing’.

My son is with paediatrics for his development (mainly due to hypermobility) and none of them, nor his nursery workers have expressed any concern about autism. So when other people make assumptions that he has it, it pisses me off.

I don’t think that post was ignorant, as i have suggested the same thing. There are other ways of going about these things and sometimes there are different avenues, posting to random strangers on the internet is not one of them.

Absolutely. I also had professionals telling me that my children didn't have SEN as well, which was really annoying and made me feel like I was going mad. My youngest was diagnosed the quickest out of all of mine but it still took over 6 years from me raising concerns to him being diagnosed. My 2nd son is the longest. I raised concerns when he was one and now aged nearly 16 he is due to have an assessment this summer.

I think the most difficult part is that at parents evening the teacher is all really positive and then when they do the ehcp application they are really negative. I know they have to do it like that but it really messed with my head. When they were little the HV used to show me a chart and say they were 6 months behind in physical development and 3 months behind in cognitive development which was really clear and easy to understand. But in primary school you get "working towards", "expected" and " exceeding " which is really vague.

I myself had no idea and it just wasn't right to assess until my son was about 9 years old. One person I knew casually said to me she thought he was autistic at age 2. I was really mad. I don't know why.
Sometimes all you can do is wait until your kids are older and then get a full assessment done then. I don't know your child at all so I absolutely can't diagnose.

There is an incredibly strong genetic link between hypermobility/ Ehlers Danlos Syndrome and Autism/ ADHD. I believe there may be research papers online but hypermobility is terribly terribly treated on the NHS. I have EDS, my son is Autistic and I can see he is hypermobile. Whatever the outcome, I hope your little one thrives.

I know that services are hampered at the moment, that's across the board, but there is no other way to get a diagnosis, is there?

Be rude and dismissive if you like, no skin off my nose and it doesn't matter to me if you take 'medical' advice from online randoms either.

I get the opposite, if I say the most insignificant thing about my children it's "sounds like they have sen!" Seen it said about other kids as well and it's just totally normal things like not liking certain things and "sounds like Sen" I think people say it too much these days.

I agree. It’s quite concerning actually.

Going by mn alone any behaviour has a label slapped on it even the smallest thing 'oh they must have insert label here'

Is there a child that doesn't have anything?

It is annoying - people dismissing your concerns though I think they believe they are being reassuring.

I've had it with my DC - my parents had it with me - it's very undermining and often delays you accessing help.

There is an incredibly strong genetic link between hypermobility/ Ehlers Danlos Syndrome and Autism/ ADHD.

This is interesting - we have lose joints that click out of place - easily bruised skin and skin that seems stretchey digestive problems kids all complin about dizziness on standing - all mild but HCP have no interest but have started to wonder about Ehlers Danlos Syndrome but also have lots ND but only place anyone mentioned a connection is on here.

However I also think there too much arm chair diagnosis on here as well.

This is exactly what i mean.