Anyone got a kid with autism?

[holyzombiejesus]

My little boy is 5 and his school are concerned that he's displaying some signs of ASD. They say that he may just be a quirky kid but we're worried at home too. He doesn't hang out with his classmates at all, opting to just go and play on his own in a corner at playtime. School say he sometimes doesn't even seem to have an awareness of who his classmates are.  He has a bit of a stammer which could also be a signifier, and we all have real issues with him at meal times, to the point that he will only really eat Ready Brek, pasta, cheese, spaghetti hoops or cheesey puff pastry stars and a bit of fruit, maybe one bite of broccoli. He's having to take medicine for an iron defficiency now. He's really in to facts although has a brilliant imagination too, which makes me question if he's on the spectrum. Also, he can be really focussed and loves imaginative play and making up jokes. I dunno, he had a meltdown earlier because he wanted his mum to bath him and got so stuck on it that he was sobbing for half an hour, continually repeating "I want mummy to give me my bath". Then again, he was shattered as he's been away for a few days and all his routine has been out. He's our first/ only child too so we're not sure how much of this is just usual shit for a little kid. He does seem different to others, although the school think he might just have a few quirks.

I have a really negative impression of ASD as the only kids I've encountered with it are the ones who I used to look after who were in care and the ones I work with now who are from vulnerable families. My wife who teaches in a primary school is more blase about it, but I just feel really panicy and sad. Just don't know what to do really. We've started the ball rolling re an assessment but the SEN lead at his school said our LA is pretty poor for ASD, so not holding our breath for anything any time soon.

[peanutbutter]

I know someone who is now in his 20s and somehow still hasn't been diagnosed despite being deeply autistic. Can remember seeing the signs of it when he was like a year old (I'd've been 12 at the time) in terms of how he engaged, by the time he was 4 it was pretty much accepted by everyone (and everyone knew his mam was in some pretty intense denial that couldn't be dealt with).

I suppose the main thing is that it's a spectrum, half of this forum is probably on it; if he's got some social issues that could suggest ASD then there can't be much harm in following it up. Am pretty sure if my cousin had actually gotten any support at all he'd be quite independent by now, instead he's extremely dependent on his ageing parents.

[Retinend]

I was a weird kid who never played with others. I exhibited behaviours that others would today identify as autistic - constantly being in my own world; withholding communication if I didnt like you; preferring books to people; liking to catalogue things.

What separates my mind from a true autistic mind is that I can read a room and read a person's expressions as a cue for how to act. As an adult, I can positively adapt how I talk and what I talk about to the feedback someone gives me via facial expressions, body language etc. I didn't face the hard learning curve that true autistic people have in attaining this skill. Still, I do consider it a cultivated skill - not a talent - of mine.

My reaction to your story about your son is that perhaps he will develop similarly to how I did - lopsided, but eventually just fine.

[Ferris]

Ferris Jr has stammers when he goes through a development hurdle at full speed and had a long phase of not wanting to speak to people and stack blocks up instead. He also has monster tantrums about fucking nothing (I grated an apple in the wrong direction in December and still hear about it). He still treats the neighbours with deathly silence when they give him a cheerful wave, and the "wrong person administering the bath" tantrum sounds exactly like something he'd go for given half a chance.

He also loves imagining and making jokes (he knows it's very important to make people laugh, no idea where he got that from...), and tells me stories and sings songs.

I'm not saying "it's nothing mate ignore it it'll be alright", you know the sprog better than I do, but I will say small kids are fucking mad and I'd be hesitant to diagnose a child with something off their seemingly-weird behaviour. All kids are weird. If it's bothering you, get it checked out with a professional but some kids (including yours truly - I used to read books in the wardrobe) were a bit odd but basically fine.

[paruses]

To be fair, broccoli is horrible so he sounds pretty switched on to me.

I don't have any advice on this but was talking to my sister about our friend's son. He was diagnosed (I don't know the exact term but it's always been: autistic) at about your son's age. Was "quirky" and said funny things (very blunt) but as he got older he withdrew and struggled quite a lot. It got to a point where the feeling was he'd struggle in life and be quite restricted. But, he's now finished university (a maths degree) and has some well paid job and lives in his own flat and is perfectly independent (when he was dropped off at university he just took his stuff into his room and said "bye then" to his parents and got on with it).

Point of this is that if you feel panicky and sad it's understandable but there are good as well as bad outcomes. Unlike peanutbutter's cousin my friend's son had support (not necessarily just handed to him/them) and he had parents who were aware of his needs and could address them. It wasn't always easy at all but it helped them make better decisions and take better action.

[shoulders]

I was a weird kid who never played with others. I exhibited behaviours that others would today identify as autistic - constantly being in my own world; withholding communication if I didnt like you; preferring books to people; liking to catalogue things.

What separates my mind from a true autistic mind is that I can read a room and read a person's expressions as a cue for how to act. As an adult, I can positively adapt how I talk and what I talk about to the feedback someone gives me via facial expressions, body language etc. I didn't face the hard learning curve that true autistic people have in attaining this skill. Still, I do consider it a cultivated skill - not a talent - of mine.

My reaction to your story about your son is that perhaps he will develop similarly to how I did - lopsided, but eventually just fine.

With only one fatal flaw: phimosis.

[PlanktonSideburns]

Ferris Jr has stammers when he goes through a development hurdle at full speed and had a long phase of not wanting to speak to people and stack blocks up instead. He also has monster tantrums about fucking nothing (I grated an apple in the wrong direction in December and still hear about it). He still treats the neighbours with deathly silence when they give him a cheerful wave, and the "wrong person administering the bath" tantrum sounds exactly like something he'd go for given half a chance.

He also loves imagining and making jokes (he knows it's very important to make people laugh, no idea where he got that from...), and tells me stories and sings songs.

I'm not saying "it's nothing mate ignore it it'll be alright", you know the sprog better than I do, but I will say small kids are fucking mad and I'd be hesitant to diagnose a child with something off their seemingly-weird behaviour. All kids are weird. If it's bothering you, get it checked out with a professional but some kids (including yours truly - I used to read books in the wardrobe) were a bit odd but basically fine.

Why the fuck would you peel an apple the other way

Need your fucking hard drive checked mate

[The Dog]

.

[Ferris]

Why the fuck would you peel an apple the other way

Need your fucking hard drive checked mate

I don't even remember what I did wrong. I grated it into his granola without peeling it first or something.

My theory is that small kids have such little agency in their lives (they get told where to go, and what to wear, and what they're gonna eat, and when it's bedtime etc etc) that the tiny amount of control they do have (which gloves to wear, how to open the yoghurt container etc) is ascribed outsized importance because it's one of the few areas of their daily life they can exert some control. It's not really about grating the apple wrong, it's that I took away a vector of his executive power without realizing.

I possibly overthink these things.

[confettiinmyhair]

Sounds a lot like my son, who is aged 4 now. He marches to the beat of his own drum, and is very particular with routines and what he eats.

It's interesting as I think there is undiagnosed ASD in the family. I've always wondered about myself in that regard, as I've always struggled socially. But maybe I'm just a bit weird?

[PlanktonSideburns]

I don't even remember what I did wrong. I grated it into his granola without peeling it first or something.

My theory is that small kids have such little agency in their lives (they get told where to go, and what to wear, and what they're gonna eat, and when it's bedtime etc etc) that the tiny amount of control they do have (which gloves to wear, how to open the yoghurt container etc) is ascribed outsized importance because it's one of the few areas of their daily life they can exert some control. It's not really about grating the apple wrong, it's that I took away a vector of his executive power without realizing.

I possibly overthink these things.

Yea I can totally believe that

Hah, they're such losers

[paruses]

Let him choose what gloves to wear? He's mugging you right off. He probably doesn't even buy his own cigarettes.

[Ferris]

He's worse after a few rum and cokes but what can you do.

[Retinend]

Children? toxic as fuck.

[Cold Meat Platter]

I'll take one as well if there's any spare.

[Sonny_Jim]

My wife who teaches in a primary school is more blase about it, but I just feel really panicy and sad. Just don't know what to do really.

I've got a kid with mild ASD so can only comment on my own experience, but I figure I might pipe up and try to make you feel a bit better about it.

A lot of the behaviour you described we saw in our kid, preferring his own company, being extremely picky about foodstuffs, stuttering etc.  He's 14 now and most of these behaviours have either gone or he's got strategies which he uses to help with it.  The stuttering was probably the most worrying, but he grew out of it around about 8-9.  He still has trouble getting his words out when he's elevated, but he knows to try and stop and calm himself down a bit.

My point is that at 5 you'll probably be seeing the worst of these behaviours before you can start getting a handle on it.  I know saying 'they'll grow out of it' is not especially helpful, but as they get older they'll develop techniques to minimise the impact ASD has on their life.

Good support from the school is pretty vital and can definitely take a lot of worry off you.  We ended up taking ours out of his primary because their solution to his bad behaviour was to isolate him in a room without windows until he calmed down, which as you can imagine was doing more harm than good.

The good news is that in terms of support there's much more of it around than there was 10-20 years ago and people are generally more aware and accepting of it.  I did have a quite chuckle to myself once when I was waiting with him at the hairdressers to get his hair cut.  Some mother came in and asked if she could skip the queue because her son was on the spectrum.  I obliged and nearly said to her 'Yeah, so is mine, but you don't see me leveraging it to skip queues'.

But, to be frank, until you get further along in the assessment then you don't really know either way, which is probably the source of some of your worry.  Nowadays my son is basically yer average teenager, wanking and staring at phones and all that.  The 'rolling around the floor screaming because we told him to stop playing video games' thing seems like a different lifetime now.

EDIT:

(I grated an apple in the wrong direction in December and still hear about it).

I once used my knife and fork to help him cut up his food and he refused to eat the rest of the food, as he thought it was 'dirty'.

[Ferris]

I mean, he's mentioned it once a few months later in relation to me correctly grating an apple now, but it is mind-boggling how much he remembers.

We had a rental apartment ~2 years ago before we bought this place when he was 14 months old, and the other day out of nowhere he asked if we were going to go back to that one because he liked the curtains and he could point at the window that was his room/kitchen/living room. It was quite spooky tbh.

[Art Bear]

I have two autistic kids, boy and girl, 10 and 6.  Both of them were diagnosed at about 3.5, but if it wasn't for an overqualified child care worker tipping us off about the oldest, I'm sure we'd have told ourselves he was just quirky until he shot up his high school⁽¹⁾. Second time around it was blindly obvious to us because of the earlier experience. Girls generally "present" autism differently to boys, but there are a lot of similarities.

Both of them are in a standard primary school but have a whole bunch of support that they would not have without the diagnosis, (a) because the school know what they're dealing with, and (b) there's the funding to provide the extra help/reasonable adjustments they require. Schools (in general) welcome your kid having a diagnosis (if it's appropriate) 'cos then they can resource your kid's needs better.

Don't assume that because he has a great imagination and sense of humour he can't be autistic - my son has both. But he also can tell you the length in minutes and classification rating of every film he has ever seen and many others that he's too young to see yet.

Sonny_Jim makes many good points. If you're concerned, definitely get an assessment.

Happy to talk by PM if you think I can be of assistance.

⁽¹⁾ satire.

[holyzombiejesus]

Thanks very much @Sonny_Jim and @Art Bear . It's good to hear from people who have gone through similar stuff. I'm find it really frustrating and a bit upsetting, as we're receiving no support or advice, partly because the school Senco is ill and partly because he's not had any diagnosis yet.
We're really struggling with his eating. Today, he said he wanted pasta for dinner but once at the table he only ate one piece and then wanted to go and play. Normally, we'd tell him to go fuck himself if he thought he could ask for food, wait for us to present it to him and then not eat it, but if it is due to ASD, is this something that he can be criticised for? How do you manage behaviours if you don't have that awareness of how much control is behind it? We were encouraged to take him off school dinners as he would sometime only eat literally one pea and he started off well with packed lunches. Now, he's as bad as he was with hot dinners and our hearts are pounding when we open his lunch box at the end of the day to see he's only eaten 1 pizza star and half a grape. Sometimes feel like just ignoring meal time rules and letting him leave the table as soon as he likes - I feel really stressed before tea time so he must pick up on that - but it seems counter-intuitive to let a 5 year old saunter off from the table having not eaten.
It's comforting to know that kids find ways of self-managing their issues; one of the things that makes me really sad is whatever he has impacting on his dreams and future. I don't care about him getting well-paid jobs or even doing that well at school, just that he's happy and kind, and it's foul to think that roads may be closed off to him if he gets assessed as ahving something. From what you say, that isn't necessarily the case. It's so difficult though.

[Noodle Lizard]

We're really struggling with his eating. Today, he said he wanted pasta for dinner but once at the table he only ate one piece and then wanted to go and play. Normally, we'd tell him to go fuck himself if he thought he could ask for food, wait for us to present it to him and then not eat it, but if it is due to ASD, is this something that he can be criticised for?

At least some of this really is just common (annoying) kid stuff, though. I think Ferris's explanation further up the page is probably about right. My own kid does that sort of thing with food all the time. She's only 2, but I met my stepson when he was 6 (10 now) and he was pulling the same sort of nonsense (in his case, asking for too many things or bigger portions and then barely being able to eat any of it). Kids are a bit weird. In those first ten years or so they're basically speedrunning life basics, and they'll challenge things when and where they can - often to their own detriment. That's all part of the learning process.

Of course none of us know your kid, nor are we qualified to give any sort of diagnosis if we did, but unless they're behaving in a way which is significantly destructive to their wellbeing, I'd be wary of doing too much in the way of diagnoses/counseling/medication. I'd think it would do more harm than good for a kid to grow up thinking there's something officially "wrong" with them if they actually fall within the realm of the ordinary.

Bear in mind, my experience is mostly from the US school system. In my stepson's school, more than half of his classmates are either in therapy or on medication, and they have someone on staff whose job it is to basically diagnose every child who has trouble paying attention or is a bit hyper or shy. It just seems like a really weird and inorganic way to develop people to me, and exploits the fair concerns of a lot of parents for their kids' wellbeing. On the other hand, there are far more resources available to you now if your child truly is on the spectrum or struggling with some other disorder.

I truly hope things improve, though, regardless of what happens. I was a bit of a weird kid myself, and my daughter's already showing a lot of similar traits (a bit of a loner, off in her own world), so I'm sure we'll be dealing with some concerns ourselves sooner or later. I hope I'll be able to be as patient and understanding as you and your partner are being, despite the worries. Ultimately you just want what's best for your kid, and that's clear to see. As long as they know that, that's as good a foundation as any to start working on this stuff.

[Kankurette]

No, but I was one. And I can't eat certain textures/foods because they make me gag. I stopped eating meat for this reason.

[holyzombiejesus]

At least some of this really is just common (annoying) kid stuff, though. I think Ferris's explanation further up the page is probably about right. My own kid does that sort of thing with food all the time. She's only 2, but I met my stepson when he was 6 (10 now) and he was pulling the same sort of nonsense (in his case, asking for too many things or bigger portions and then barely being able to eat any of it). Kids are a bit weird. In those first ten years or so they're basically speedrunning life basics, and they'll challenge things when and where they can - often to their own detriment. That's all part of the learning process.

Of course none of us know your kid, nor are we qualified to give any sort of diagnosis if we did, but unless they're behaving in a way which is significantly destructive to their wellbeing, I'd be wary of doing too much in the way of diagnoses/counseling/medication. I'd think it would do more harm than good for a kid to grow up thinking there's something officially "wrong" with them if they actually fall within the realm of the ordinary.

Bear in mind, my experience is mostly from the US school system. In my stepson's school, more than half of his classmates are either in therapy or on medication, and they have someone on staff whose job it is to basically diagnose every child who has trouble paying attention or is a bit hyper or shy. It just seems like a really weird and inorganic way to develop people to me, and exploits the fair concerns of a lot of parents for their kids' wellbeing. On the other hand, there are far more resources available to you now if your child truly is on the spectrum or struggling with some other disorder.

I truly hope things improve, though, regardless of what happens. I was a bit of a weird kid myself, and my daughter's already showing a lot of similar traits (a bit of a loner, off in her own world), so I'm sure we'll be dealing with some concerns ourselves sooner or later. I hope I'll be able to be as patient and understanding as you and your partner are being, despite the worries. Ultimately you just want what's best for your kid, and that's clear to see. As long as they know that, that's as good a foundation as any to start working on this stuff.

Cheers, that's really nice of you. It's really hard to see the wood for the trees sometimes. What kind of weird is my boy? Ok weird or needs assessing weird? I think the lack of eating does impact on his health and we're having to give him this iron drink 3 times a day from tomorrow. I can see his playground from the train station and I sometimes see him at play time and he's always on his own. When he goes to birthday parties (which are nearly always at soft play centres) he never engages with the other kids. I feel a bit hypocritical because at primary school I used to hide behind a shed and try to have a nap, but I just desperately want to see him running about and laughing with other children. He's definitely quirky, he's really in to monsters and weird creatures and knows all these obscure ones so when other kids are in the playground chasing ach other he's on top of the climbing frame roaring "I'm an Ushi-Oni", and they generally stay away from him. At least he doesn't seem to realise that. Whatever we do, we'll do sensitively and try and shield him from any concerns we may have, and I guess that's the best we can do.
When I worked in the children's home, we had a few kids on the spectrum and, looking back, I'm absolutely horrified by the way the staff behaved with them. Physically moving the kids heads so they were forced to look at whoever was speaking to them, making one of the kids wipe down the door frames he would habitually tap as he walked down the corridors, and whilst we'd never dream of doing anything approaching that (which, tbf, was done without any knowledge of ASD and how best to work with it), I am really wary that there's probably a red area where appropriate parenting of non-ASD kids becomes harmful to those on the spectrum.

[PlanktonSideburns]

Totally anecdotal this, but I have seen mates kids behave exactly as you describe, not eating food, going APESHIT about the whole keefuffle of mealtimes, goes on for years, parents try everything, maddening, think my brother did it even, he's not diagnosed as autistic, and I don't think my mates kids are, is that a thing kids do? Like revenge?

[Noodle Lizard]

Yeah. Perhaps it's due to my own experience of childhood and school and that, but whenever I see a kid sort of off in their own world now, I tend to think "Ah that'll be the interesting one". I went to one of the school chorus concerts my stepson was in, and there was this one boy doing these hilarious Johnny Rotten sort of stage moves, clearly not giving a single fuck about what anyone else was up to (or what the song required). I think my wife commented something to the effect of "ah, poor kid", which I imagine is what most of the parents thought, but it just reminded me of myself more than anything else.

It's a very reductive way of looking at things, of course, and I'm not sure how I'd react if it were my own kid and they were struggling socially (or causing us grief, of course!) I have plenty of personality conflicts with my stepson, even though he's about as bogstandard a 10-year-old boy as you like. It's hard to say that without sounding rude, but what I mean is that he's got friends, aspires to be like the "cool kids", is interested in all the normal things and is bang-average academically (admittedly a very low standard in the US system). In a way, I might've been encouraged to see him on top of the climbing frame roaring "I'm an Ushi-Oni" at some point.

Sorry, I'm going off on my own tangent here, mostly because I have nowhere near enough experience with fully confirmed ASD or similar to really give any useful advice in that regard, and I can't reiterate that enough. But hopefully you can take at least some comfort in the idea that perceived "weird" people may struggle with normal life, but often end up doing quite interesting things as a result.

[Ferris]

The little FUCKER asked for curry (my jalfrezi takes about 2 hours to make), then at the crucial moment cheerfully told me hates curry and refused to eat any.

After 20 minutes or so, I got a bit pissed off and out some on my finger and put it in his mouth.

"Oh I love curry!" and started complaining that he didn't have enough. Like mate, give me a fucking break.

[Poirots BigGarlickyCorpse]

Was on holiday once with my martial arts club and our instructor's five year old spent the weekend eating almost nothing but single serving tubs of Nutella and honey.

When I said this to my sister, then mother of a four year old, she shrugged and said "yeah that happens".

[flotemysost]

The little FUCKER asked for curry (my jalfrezi takes about 2 hours to make), then at the crucial moment cheerfully told me hates curry and refused to eat any.

After 20 minutes or so, I got a bit pissed off and out some on my finger and put it in his mouth.

"Oh I love curry!" and started complaining that he didn't have enough. Like mate, give me a fucking break.

I'm sorry to laugh at this because it sounds truly exhausting, but this really cracked me up.

Little kids' mercurial insistence that they HATE things/people never fails to amuse me, though it must be incredibly draining to deal with as a parent/carer. When he was 5 or 6, at a barbecue (in front of loads of people, of course) my friend's godson sweetly asked his dad, mid-meltdown, "Can I kill you?" which I'm afraid I also laughed at. Goodness knows I'd be a terrible parent, wouldn't even know where to start with discipline.

No useful advice to add here but best of luck with the assessment holyzombiejesus. Understanding about ASD seems to have come on in leaps and bounds even in recent years so hopefully you can get the support and advice you need.

[bakabaka]

I have two kids who are on the spectrum.
The older of the two had a really hard time at mainstream school, but a wonderful time with the Hospital and Home School service, but then was kicked out of university because he was autistic, after two years of treating him like shit. Luckily they said in an email that they knew that what they were doing was illegal so he got awarded £30k damages (which the solicitor then stole to pay his own debts).
My daughter is also on the spectrum and we spent 3 years fighting Social Services to keep her when we were accused of abusing her because the symptoms of autism and child abuse were identical except for one line in the advice given to GP's. In the end they changed the national guidelines because of the case. It ended with the social workers telling us we were the most supportive parents they had ever seen.

I hope you don't have to spend ten years in which you constantly and continuously have at least one legal threat hanging over your head just because you're fighting for your child's rights. And that two weeks after the final tribunal has cleared your name and proven you right you get a diagnosis of terminal cancer. It's not much fun.

The ASD is a doddle - it just takes a little bit of observation, empathy and reliability.

[Ferris]

They're more invested in the idea of not liking something, and they basically don't give a shit about fried eggs or curry or whatever.

If you try to explain that they do like food (because they eat it all the fucking time) that becomes an assault on their right to believe mad things, and in a direct conflict like that you just end up making all parties unhappy. How dare you dictate my beliefs?!?!

It's innately funny (and I chuckle even during the event), but it's very fucking annoying. You like this you wally, look; here.

[Dex Sawash]

We get to look after the beagle from next door for a few days.