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AIBU?

To really not understand...

169 replies

jamoncrumpets · 28/11/2019 17:58

How some parents can't seem to work out that their kids are autistic before they start primary school?

I've read at least five threads this week about kids with no diagnosis struggling in mainstream school. Kids that aren't even yet on the ASD diagnosis pathway.

How could your kid get to five and you not notice that they were autistic? Honestly?

To be absolutely clear I am not talking about parents who have noticed differences and have started on the diagnosis pathway - I know myself from experience that it can take up to two years to get a diagnosis.

I'm talking about parents who have not even begun that process.

I'm genuinely baffled by it.

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MildGreenFairie · 29/11/2019 20:43

Have to chuckle at people saying 20-30 years ago it was unheard of but now it's on every parenting forum on the world wide web, when we didn't have most of these far reaching forums or SM platforms 20-30 years ago. The case would probably be the same now without it as unless your child or you are involved with SEN schools, groups or have family members with similar dx, you will not.come across that many people in the same position Hmm.

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egontoste · 29/11/2019 17:52

Twas ever thus. I went to school with someone whose quite severe dyslexia wasn't dignosed until she was at college.

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Lunafortheloveogod · 29/11/2019 17:30

The point of back in the day is interesting..
I remember one child with adhd in our full year and he was extremely obvious.. pretended to be a train, dived around like a lunatic making gun noises and could not physically sit down for more than a moment. He was refused a place in the SN school because he wasn’t bad enough, fully continent, vocal and able bodied enough they thought one day he’d just sit down n behave.. clearly that wasn’t thought through and I remember him like that till he left. He did get more support in the later years.
We had a SN school further out of town and that’s where the kids who weren’t able to do main stream went, some of them were on the spectrum but completely non verbal, personal care required, meltdowns that could injure an adult, very high needs etc. Definitely not what I know as autism now and if it wasn’t for the internet/friends dcs I don’t know if I’d know much more as I’ve not needed to look into it personally.

I wonder how many of us were just dramatically sheltered from disabilities years ago to not see anyone with xyz.

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PanicAndRun · 29/11/2019 17:09

A lot of the "obvious" signs can also present in NT children,particularly when very young.

DD didn't eat,sleep or talk. She didn't like men as a baby. Hated all loud noises and the hairdryer sent her running away screaming. Incredibly shy, barely interacted with other children,even less so with grownups. Eye contact only with a very select few.Never looked at the camera for a picture etc.


She's NT, developing normally and a pretty average 8 yo now. Did we wonder? Yes. Were we told to wait and see by HV,GP,SALT etc? Also yes.

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WiltedPlant · 29/11/2019 13:11

Another thing is that even if a parent does have concerns about their child's development and they discuss it with others, it's often brushed off as "all children do that" so it's easy to doubt yourself, especially if you don't have other children for comparison.

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FoxFoxSierra · 29/11/2019 12:20

This thread is so offensive and judgy! I had to step away for a while because some of op's posts really upset me.

Op my autistic child is dc1, I had hardly any experience with children before he was born so no idea what was "normal" or concerning. He hit all his milestones and had all his scheduled checks with the hv who always said he was behaving exactly as she would expect - she's trained to check for autism amongst other things so if she didn't think there was any reason to refer him for further assessment why would I not believe her? He attended nursery and school and no concerns were ever mentioned, he made friends and got good reports so why would it occur to me that he might be autistic and even if it did what would you expect me to do with that considering that the school would not have backed up a referral? It was only when he was 7 that he started to struggle at school and we could see where he was falling behind his peers in terms of fine motor skills and emotional regulation - even then he was referred to be assessed for dyspraxia and adhd before even the paediatrician considered autism as a possibility - what a shame they couldn't use google like you eh? After lots of time waiting he was finally diagnosed aged 9. Looking back now I still can't see anything in his early development that would have suggested autism

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ChanChanChan · 29/11/2019 11:07

@jamoncrumpets what are these "certain things that are very obvious", can you describe or list them please? Were you diagnosed at an early age yourself?

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IntoTheDeep · 29/11/2019 10:51

I’d say it’s not just HVs who need training on spotting early traits of autism. Other people who work with young children could also do with that sort of training.

When we were getting concerned about DS1’s development and asked his nursery key worker about it, she assured us that his development was fine, within normal ranges, nothing to worry about etc etc.

He was later diagnosed with ASD.

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jamoncrumpets · 29/11/2019 08:04

Sorry to not reply for a while but I have been reading and digesting and taking a lot on the chin.

I can't understand how parents don't notice autism because, to me, there are certain things that are very obvious. And I find it hard to imagine others' experiences of it because I am autistic myself, albeit very high functioning.

What I am taking away from this thread is that:

  1. The image of autism is being 'like Rain Man' still exists in 2019 and that is quite depressing, clearly more needs to be done to change perceptions of that

  2. HV's really could do with training on spotting early traits of autism and ways to communicate possible concerns to parents

  3. The diagnostic process needs to be quicker, and more thorough, which in itself is almost an impossibility.

  4. I need to work on my phrasing! Point absolutely taken.
OP posts:
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ThePurpleMoose · 29/11/2019 04:46

Yes YABU. I regularly refer children for ASC assessment in my job and a lot of them make it to late primary age or even early/mid teens before the possibility is considered.

Some children I see manage to slip under the radar in a supportive, small primary school environment and can be very good at modifying how they behave, but then things start to fall apart when they enter the busy, socially complex world of high school. When you look back with the parents there will always have been signs early on but these can be easily missed if you're not looking for them with some children.

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FoxFoxSierra · 29/11/2019 04:36

Because I'm a shit parent obviously Hmm

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ScienceIsReal · 29/11/2019 03:30

I knew my friends child was autistic since 2, no diagnosis or clue till they started school. Lots of parents look at their children through rose-tinted glasses, especially when they're small.

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Zippetydoodahzippetyay · 29/11/2019 03:11

People don't know much about autism or children in general.
People adapt to their own children without realising they are doing so
Some children don't show signs as early as others
Some symptoms can be misdiagnosed. Eg. My cousin was diagnosed with ADHD and treated for that. His Autism diagnosis didn't come until many years later.

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prawnsword · 29/11/2019 03:01

I don’t have kids but can understand it.
I grew up in the 80s & kids would be labelled as quirky. The only child I have ever directly known with diagnosed autism was my ex’s son & he is obviously autistic - non verbal, not toilet trained, avoids eye contact, runs away constantly etc. As I recall when my ex was first told about his son’s autism he denied it. Now he accepts it. I think parents often don’t want to think their child is not “normal” for want of a better term. Parenting styles have changed & being so child focused these days you would think they would see it earlier, however parents adapt their behaviours to suit the child & It only becomes more obvious when they start school & compared to their peers the differences become more of a challenge, thus easier to spot.

I suspect people must ha s told my ex there was something wrong with his son but he never wanted to believe it. Also I think some people don’t want to say anything From fear of causing offence, so you’re damned if you do or don’t!

The school has responsibilities to flag these things, so don’t have the same guilt associated with say, a family member gently pointing out certain behaviours in a loved one’s child.

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IAmNotAWitch · 29/11/2019 02:40

My total experience of autism prior to the internet really taking off was Rain Man.

DH and I are both weird. I suspect if we were struggling and attempted to get health we would both get diagnosis of autism/aspegers (or whatever it is called now).

DS1 was 4ish by the time I was on the internet/parenting sites.

There is a long way between Rain Man and Me. My kids are a bit "different" but it doesn't really cause them problems because we see it as "normal".

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DioneTheDiabolist · 29/11/2019 02:34

Oops, posted too soon.Blush

My neighbour thinks the way you do OP, so you're not alone.Flowers Saying that, he's an ignorant disabilist cunt.

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DioneTheDiabolist · 29/11/2019 02:32

Yes, YABU OP, autism is a spectrum disorder and I didnt know DS had it until he was referred for assessment aged 7. I thought he was just my beautiful, clever, unique, idiosyncratic son. Turns out he is.Grin And he has ASD.🤷‍♀️

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OwlBeThere · 29/11/2019 02:12

My children were both over 5. My daughter was 11. In hindsight, she had some indicators (fussy eating, dislike of certain clothes, struggled with starting school) but they weren’t obvious until she hit high school. Then things rapidly went south. Sorry if I’m such a shit parent I didn’t know.

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RockinHippy · 29/11/2019 02:07

Mine is 17 & we've only been trying ... & despite GP backing, failing for assessment since she was 15. She is very different to our friends kids with autism & we had no idea that meeting her milestones very early could be as much of a sign as delays. She also has other health problems that cover some ASD symptoms too & masks it all incredibly well, but still massively struggles, which has only become more obvious in more recent years. Speaking to NAS this is very common with high functioning girls. So 5 is nothing 🤷‍♀️

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helacells · 29/11/2019 01:59

I often wonder why autism is everywhere now. I grew up in the 80s and never saw anyone displaying autism traits. Now it's on every parenting forum and you often see kids with obvious traits in public. Is there something in the soil or water that's damaging genes? Has anyone done a study on this?

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coastergirl · 28/11/2019 23:43

My dad and I frequently have these conversations about him being unaware of children with autism or other special needs when he was a kid (he was born in 1946). He's genuinely fascinated though and interested in my answers.

Before the 1970s, children with autism were considered to be ineducable. They were the responsibility of the healthcare system, rather than education. They were placed in institutions. Mothers who gave birth to babies with Downs Syndrome were often encouraged to place the child in care and forget they existed.

The combination of the changes in how we as a society care for people with autism, and the improvements in diagnosis, mean it's really not surprising that autism seems to be much more prevalent these days. It doesn't mean it's actually more common!

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saraclara · 28/11/2019 23:33

I do not remember a single kid in the 70s or 80s who had behaviour that would now be diagnosed with autism.

That's because they weren't in mainstream education, and many were in residential care. The more severely affected were just called 'brain damaged' and you didn't really see them out and about.

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Allmyarseandpeggymartin · 28/11/2019 22:55

Op has fucked off, just as well really

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PanicAndRun · 28/11/2019 22:47

So, compared to your first year, and now, how many children on average present with these behaviours, however discrete, and have the number of children presenting with such behaviours increased over your 24 years?

What behaviours exactly? You keep mentioning them. No specific behaviour is present in all kids with autism, some might be more common,some might be viewed in just a few, but there's no specific autistic behaviour.

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Thestrangestthing · 28/11/2019 22:44

Off for a name change OP?

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