Anyone got a kid with autism?

[holyzombiejesus]

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.

Jeez, think I'll count my blessings. Is your cancer ok?

[Ferris]

Christ I missed that in your post. Much love @bakabaka

[bakabaka]

Jeez, think I'll count my blessings. Is your cancer ok?

Yeah, it's fine, it went away. Did a fair amount of damage while I had it but there was no way I was going to die just when life finally got a bit easier.

The main problem we found with having a child, and particularly a child on the spectrum, was the educational side. I'm told it's much better these days, but finding a school that can support your kid makes all the difference. And if they ever say "We don't allow bullying in our school." just turn around and leave as it means that it's out of control.

One thing we found that helped (I suspect again it would for all kids but more so for those on the spectrum) is : never make a promise that you don't keep. So those exasperated "If you don't eat this now, there will be no pudding!" threats must be upheld. There are very few things in the world that are reliable, but if you can be that for your child it makes life easier for both of you. It may already be too late at 4 and expect a few teething problems at the start, but soon there will be far fewer meltdowns (on both sides). It isn't programming your child, though the process may look similar, it's showing them that you will be their rock when all else is unpredictable and distressing.

[Sonny_Jim]

. So those exasperated "If you don't eat this now, there will be no pudding!" threats must be upheld. There are very few things in the world that are reliable, but if you can be that for your child it makes life easier for both of you

1 million percent this, with bells on.  The world is confusing enough for them without you changing the rules all the time.    One thing we have had success with is to start with small portions and tell him he can have more once the plate is clear, as a full plate can be daunting to him. 

Also funny story because why not:

When he was about 8 he had a friend come over for tea he'd met at the specialist (ie autism focused) school he went to.  Dessert came out which was a scoop of vanilla ice cream in a bowl.  His friend looks at me and says:

'Do we only get one scoop because you are poor?'

No, you cheeky little shit.  You're having one scoop and you can have more after you've finished that.

[Art Bear]

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.

"wrong", "ordinary", ouch. Language is important and I think we're moving away from the negative models. People with autism are different, not deficient.

@holyzombiejesus I won't lie to you it's a fucking struggle to deal with all the issues, and raising kids is hard enough without all that, but we've seen how being firm with the school has made a huge difference to our lad, both in class and at home. And if the school will not play ball, go to another school. (appreciate this may be more difficult if you're in a small community)

The food thing...trial and error. My kids have real issues with textures and smells but sometimes they're just being awkward. We have not done the family dinner all together for years because it's just not worth the hassle (and my wife and I both grew up in households who ate dinner together every night without fail so it's our norm). But we're slowly finding our way back to it as they get older, doing it once or twice a week on days when we're not otherwise too stressed, picking meals where the both like at least a bit of it and  not stressing when they only eat those bits. Small steps.

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,

This is so old-fashioned and harmful.

[Bently Sheds]

Sheds1 was diagnosed at 11 after some really difficult times in his early years. Our local hospital's Child Services department - particularly the child mental health area - seemed to be winding down just as he got the diagnosis and, as they decided that he didn't seem to be particularly hampered by his ASD, we were given the most cursory of care.

We did a lot of online research, some family members gave us advice - the ASD is strong in our family - and a lot of the time we winged it. But as soon as we learned some coping strategies - organised bedtime routine, pre-warning of events (and countdown to those events), being unambiguous in our speech (not using euphemisms or slang), reward charts, being consistent with our rules and standing together as parents - things seemed to become a bit easier.

It wasn't all plain sailing, there were still horrendous public meltdowns and issues at school with bullying. It was also extremely difficult for Sheds2 who's firmly NT and spent all his childhood in his brother's shadow. We spent so much time coping with 1 that 2 sometimes was pushed into the background. I look back now and feel desperately guilty that I didn't & couldn't invest more time with him.

[Mrgeebus]

@holyzombiejesus

I've got 2 kids with autism (13 & 16) and apparently I am a glutton for punishment cause I work for our local CAMHS team in a nursing role, primarily with autistic kids.

Both of mine were older when they got their diagnoses - despite concerns being raised by us and by school, school 'didn't want to label them' (to me that means school didn't want to do the workup or provide the support needed, but that's just my take on it now that I work where I do). I'm almost certainly autistic myself. This has been confirmed by my boss and was apparently one of the reasons they were so keen for me to join the team.

Despite what some are keen to tell us, autism isn't a mental health problem. It's a neurodevelopmental disorder. The autistic brain works differently. It's not a negative either, but it does mean support is vital at times.

If assessment is on offer, take it. Diagnosis doesn't change who your child is, it doesn't alter them from the same wee person you've loved since before they were born. It does give a shorthand way of explaining some behaviours, and (crucially) it does mean that schools are legally obligated to provide support.

Happy to chat by PM if you, or anyone else wants.

[Mrgeebus]

Yeah, it's fine, it went away. Did a fair amount of damage while I had it but there was no way I was going to die just when life finally got a bit easier.

The main problem we found with having a child, and particularly a child on the spectrum, was the educational side. I'm told it's much better these days, but finding a school that can support your kid makes all the difference. And if they ever say "We don't allow bullying in our school." just turn around and leave as it means that it's out of control.

One thing we found that helped (I suspect again it would for all kids but more so for those on the spectrum) is : never make a promise that you don't keep. So those exasperated "If you don't eat this now, there will be no pudding!" threats must be upheld. There are very few things in the world that are reliable, but if you can be that for your child it makes life easier for both of you. It may already be too late at 4 and expect a few teething problems at the start, but soon there will be far fewer meltdowns (on both sides). It isn't programming your child, though the process may look similar, it's showing them that you will be their rock when all else is unpredictable and distressing.

Total agreement - schools are a nightmare to deal with professionally - not recognising that by not fixing the issues which are stopping the autistic kids from coming in, and insisting that it's because they're mentally ill (they're not), that they are ultimately contributing to future mental illness where that school anxiety - because school feels unsafe somehow - then becomes not leaving the house at all, escalating self harm, and total disengagement.

Also, what you've said about following through on promises is an absolute must. I've found we're good at it now (we fucked up loads in the last 16 years), but grandparents etc who don't see the need (or don't understand ASD and think you're just a shite parent) can be a problem.

[holyzombiejesus]

Cheers @Mrgeebus .

Just heard that the Senco is back in school and I'm meeting with the Ed Psych tomorrow, so should get some answers to the queries we have. The main thing I'm struggling to get my head round is how to discern what or if negative behaviours are down to autism and what isn't. I think that the way we would address some of the ways he behaves would be quite different depending on whether he's ASD. It's doubly tricky as he's our only child so we have nothing to compare 'poor' behaviour with. When he gets 'stuck', I try to be really patient and guide him back to the ground (so to speak) and I get that. There just seems to be an overlap of what looks 'naughty' and what could be down to ASD and the way I would approach that would differ depending on cause. Does that make sense? If he's turning down food because he's being stubborn and just wants his favourite, like kids do, he can go fuck himself, whereas if he has issues with his food, I'd be a lot more sympathetic.

[bakabaka]

Cheers @Mrgeebus .

Just heard that the Senco is back in school and I'm meeting with the Ed Psych tomorrow, so should get some answers to the queries we have.

Best of luck with that.

The main thing I'm struggling to get my head round is how to discern what or if negative behaviours are down to autism and what isn't... Does that make sense?

Absolutely. Sorry,  I can't help, you just have to use your intuition. It's always good to get a second opinion so asking your partner may lead to a more balanced and less guilt-inducing decision.

[Mrgeebus]

Cheers @Mrgeebus .

Just heard that the Senco is back in school and I'm meeting with the Ed Psych tomorrow, so should get some answers to the queries we have. The main thing I'm struggling to get my head round is how to discern what or if negative behaviours are down to autism and what isn't. I think that the way we would address some of the ways he behaves would be quite different depending on whether he's ASD. It's doubly tricky as he's our only child so we have nothing to compare 'poor' behaviour with. When he gets 'stuck', I try to be really patient and guide him back to the ground (so to speak) and I get that. There just seems to be an overlap of what looks 'naughty' and what could be down to ASD and the way I would approach that would differ depending on cause. Does that make sense? If he's turning down food because he's being stubborn and just wants his favourite, like kids do, he can go fuck himself, whereas if he has issues with his food, I'd be a lot more sympathetic.

The difficulty in the early years is exactly that - is it a sensory issue (will he spit the food back out when eating it, or become genuinely distressed tend to be the only real indicators until they get a bit older and can actually describe what the issues are) - see if giving a binary choice helps - literally for dinner you can have 'this' or 'that'.

I got that spectacularly wrong when my eldest was little and just put it down to being a fussy fucker. Turns out they had major food sensory issues (and still do!).

Request a sensory profile - it's part of the assessment anyway, but the sooner its done the sooner you can begin to adapt things to his needs.

Staying calm, even when you're massively pissed off is essential too but you've already covered that anyway.

Seek out anything you can find by Tony Attwood cause he's generally spot on.

I can fire up a whole load of resource sites that I use both at work and at home, but most of the best stuff I learned was via Tony Attwood and also getting it wrong with my own 2.

Re the behaviours - address them all in the same way - a consistent method for when something is wrong is going to be more meaningful in the long run. Calm, rational explanation of why it's wrong will go way better than the instinctive loud 'No' etc.

[sarahzxcv]

Not specifically ASD related at all but Sarah Ockwell Smith (gentle parent proponent) has lots of tips about picky eating in general, how to deal with the behaviour and encourage better habits. Leans towards giving kids the benefit of the doubt, sensory issues or otherwise general kid awkwardness. There is a book out but here's a link https://sarahockwell-smith.com/tag/picky-eating/

[Ian Drunken Smurf]

My son, who is just turning six, was diagnosed at the start of 2020. We are currently trying to get him into mainstream education here in Austria from September (he is a mainstream kindergarten). Feel free to PM me.

[fatguyrantingredux]

My daughter was diagnosed late (15) and had a nightmarish time in school. Now she's just finishing her A levels ready to head to university. It's been a constant battle at times getting ongoing support with her education but I wouldn't change her for the world. Just be firm but polite in all your dealings with professionals.

[Blinder Data]

Best of luck with it all, holyzombiejesus.

Some in the family suspect our 4yo niece is autistic, mostly based on behaviour and how her brain appears to work. I'm no professional and do not want to engage in shallow "I'm so autistic lol" thinking but I've felt for a long time that her mum displays signs of autism herself.

My niece has recently started a vocal tic, a kind of "um um um" when she's concentrating. Never heard of that before but apparently it's a thing. There are certainly other behaviours which, as outlined already in the thread, are difficult to distinguish from general toddler problems: picky about food, appearing to not even hear you when you literally say "don't do that" into her ear, etc.

I think there'll be a psychological assessment soon so we should know either way. Contributions to this thread have been v helpful, thanks all.

[holyzombiejesus]

Me again. We're no further down the road with it all really, partly due to the poor SENCO being off with cancer. The troublng behaviour seems to come in waves, some days we'll question what we were worried about (although he's still ridiculously picky about food), and then other days, like today, it's overwhelming. My wife took him to football club after school and he stood out a mile. He kept running round in circles, squeeking and making silly noises. The PE bloke said he's always like this. He does this voice too which is really grating, silly and screechy. I guess this may sound really harsh but it's really embarrassing sometimes. We love him with every molecule of our beings but when we have friends over and their children are being pleasant and chatty, and he runs in squawking, you just think 'oh, for fucks sake'. It's so hard. Most mornings I walk back from the school run just wishing that we could have one normal morning. I feel so guilty for thinking that.

That brings me on to why I'm posting, I guess. Is there any support or advice forums for parents who are going through the assessment process, or have children they suspect may be ASD but don't have any finalised assessment? It seems we may get support if and when he recieves any diagnosis but until then it seems like we're on our own. I know shitloads of parents nowadays think their kids have ASD or ADHD and would like ot try and sidestep that kind of thing but beggars and all that. The other thinsg I struggle with is knowing which 'negative' behaviours we should try and manage, which are 'normal' for a 5 your old and, if 'annoying' behaviours may be down to ASD, do we try and manage those or live round them? Hope that makes sense and all advice is really greatfully received as ever.

[Pavlov`s Dog`s Dad`s Dead]

Most mornings I walk back from the school run just wishing that we could have one normal morning. I feel so guilty for thinking that.

Sending you hugs, HZJ. This feeling resonates with me enormously - my daughter was diagnosed when she was 7, and I love her to bits, and we do what we can to support her, but still, God, what I would give for just one normal morning... It's really hard, isn't it?

I'm pushed for time tonight, and I'll try and respond in more detail tomorrow, hopefully helpfully. But in the meantime I just wanted to respond to that line, and tell you it's an incredibly natural reaction to what sounds like an extremely difficult time. It doesn't make you a bad person - if anything, the opposite is true: the love and care you obviously have for your son shines through this thread.

[holyzombiejesus]

@Pavlov`s Dog`s Dad`s Dead Thanks, that's really decent of you. Much appreciated.

[Sonny_Jim]

Try not to feel guilty about wanting things to be different.  That's a fairly normal thing to think and no one would blame you for thinking as such.

For me, the biggest worry is his lack of friends.  When I was his age, I was out every night going round my friends houses, going to the park etc.  If I didnt encourage him I swear he'd never leave the house.

His 15th birthday is coming up soon, so I'm taking him to his first concert, Tyler the creator.  I asked him if he wants a friend to come but he said no.  Also we tried to organise a birthday party but he says he just wants to hang out at home on his own.  This makes me feel pretty bleak inside if I'm honest.

[itsfredtitmus]

I'm one and I wish I was dead tbf.
Funny seeing posts that could be my parents

[bakabaka]

Is there any support or advice forums for parents who are going through the assessment process, or have children they suspect may be ASD but don't have any finalised assessment?

https://www.asd-forum.org.uk/ This place was a life-saver for us. Hugely supportive, full of good advice and shoulders to cry on and advice from fellow travellers. Hopefully it hasn't changed much in the 10 years since we were there daily.

As for the guilt, we've all been there. The cycles of guilt, regret, acceptance and rejoicing never stop, though they can get stuck in one phase for quite a while sometimes. I don't think that there is ever a time when you don't feel, to an extent, that life would be so much easier if everything was 'normal and ordinary'. That's not selfishness, it's exhaustion. And then, every now and then, they do/say/make something that makes you stop and realise that they are spectacular because of their differences, not despite them.

@itsfredtitmus - both my kids were suicidal for several years, both came through and are now full of the joys (and tribulations) of life. Though I'm afraid I can't give any useful advice on how to get there - my son's change was triggered by a near death experience (a very effective therapy, according to a couple of professionals I've mentioned it to; one even bemoaned that they weren't allowed to use it professionally) but my daughter just worked through it with the help of a couple of good friends and a fair bit of self-harming. But as I say, it seems to have been a 15-25 thing and as hormones and life changes settle down, things get easier. I hope you get there before too long.

[bgmnts]

Why does everyone seem to have autistic and/or suicidal children what is going on???

[Pavlov`s Dog`s Dad`s Dead]

Why does everyone seem to have autistic and/or suicidal children what is going on???

Um, because people are responding to a thread about having autistic kids, maybe?

More seriously, there does seem to be greater awareness of neurodivergence generally, both among parents and people who work with children. Specifically, there is better understanding of how autism presents in girls: for a long time, given the joys of the systems we all exist in, the literature focused on autistic boys, who tend to react in different ways. So fewer autistic children, girls particularly, are flying under the radar. The increased prevalence of diagnoses seems to reflect this increased awareness, rather than any increased prevalence.

As for suicidal feelings, well, society is set up for neurotypical people. I'm nearly 50, and I'm in the queue for an official diagnosis myself. I would have loved to be diagnosed when I was still a child, because then I would have had some insight into what the fuck was wrong with me. To be clear, I don't actually think myself that there is anything "wrong". But wider society seems to think so. I've spent over four decades having no clue why everyone else seemed to have little difficulty negotiating social interactions and maintaining friendships while I couldn't. Crowds. Noise. Bright lights. Clothes tags. Parties. Relationships. Pretty much every aspect of existence expects a neurotypical response. It gets ever-so-slightly draining, after a while.

Not to mention the fact that the general hypocrisy of society and the denial of climate change and other systemic injustices can be very hard to deal with for autistic people. That said, everyone's different. Those are just some of the factors that affect me and some other neurodivergent people I know.

@itsfredtitmus , sending you love and unconditional positive regard, and if they would be welcome, also hugs.

[Sebastian Cobb]

^ I think another thing people are coming round to, and probably one that helps people in and around the the asd community is that 'neurotypical' is more than likely a spectrum of sorts as well and there isn't a unified normal that people not on the spectrum adhere to.

[Sonny_Jim]

Why does everyone seem to have autistic and/or suicidal children what is going on???

COVID.  For the last 2 years his education has basically been sitting in front of Zoom lessons.

[Dex Sawash]

My spectrum kid is/was easier than my normie. My advice is get a second, more difficult, neurotypical child. That plus amphetamines, obvs.

[madhair60]

Why does everyone seem to have autistic and/or suicidal children what is going on???

hey bgmnts i love you but this one missed the mark i'm afraid

rare serious mode post. i am sending love to parents of autistic children, autistic siblings, etc. with the greatest will in the world and absolute recognition that it is not something autistic people have any control over, i know it is not easy to be around and try to help somebody who experiences the world in a way that you will never truly be able to understand. my brother is severely autistic and, feel free to disagree, i found growing up with him - despite being younger - was akin to parenting at times in the level of supervision i had to apply, the level of concentration. he lives away now, in a residential house, and he is happy - he is almost always happy, thank fucking god - but he is home regularly and being around him is a mixed bag, peaking at joyous, bottoming out at utterly miserable. he is a commanding, at rare times frightening presence, because he is both utterly obvious and completely unpredictable. he and I have the closest and most affectionate relationship in our family and, at times, I find myself thinking about what his life is and always will be, and the experiences he will not have, ever, and it is the blackest, coldest, darkest, most upsetting void to enter. Sorry this is just a vent and not really even relevant to the thread title. I suppose I can say that you will experience a love and a joy from your children or sibling or whatever that is completely unbiased, unpoisoned by any kind of influence, of any capacity for cruelty, malice, etc. I don't know. I don't know what this post is anymore but i'm going to post it anyway.

[bgmnts]

hey bgmnts i love you but this one missed the mark i'm afraid

It wasn't even a joke, I am just a bit concerned. Everyone I know seems to have a child or knows a child with serious issues like this and I guess I was extremely ignorant of it earlier in life but it just feels like it's become so much more common now.

And I say this as probably one of the most depressed, negative, miserable wankers in this universe since about 15, but even I was a relatively happy child. So to know there are so many suicidal kids out there is fucking worrying to be honest. Hits home.

[Pink Gregory]

It wasn't even a joke, I am just a bit concerned. Everyone I know seems to have a child or knows a child with serious issues like this and I guess I was extremely ignorant of it earlier in life but it just feels like it's become so much more common now.

And I say this as probably one of the most depressed, negative, miserable wankers in this universe since about 15, but even I was a relatively happy child. So to know there are so many suicidal kids out there is fucking worrying to be honest. Hits home.

I don't think you have to be at absolute non-functioning rock bottom to be suicidal or have suicidal thoughts.  I have them all the time and I'm also fine most of the time.

[holyzombiejesus]

Can anyone recommend anywhere (forums, books, anything) that gives decent advice on having a child with possible ASD and how to best parent them? I looked at the forum that Bakabaka recommended but it's not really being used at the moment. I guess I'm struggling at the moment, and it's pretty tough.

His eating has got much better; he had quesadilla and white rice for tea tonight! And, he has a friend at school! But he doesn't seem to be listening to us and his noises are doing my head in. He kind of babbles and squawks. Some of it is typical little kid stuff but the nonsensical and/ or babyish noises/ voices he does really grate on me. I'm quite sensitive to noises - I have to leave the room if my wife's eating noisy food and have had to leave places due to noises that others aren't remotely bothered by - and some of the sounds he makes make him sound (and I know this isn't a very nice thing to say) not right at all. As well as really pushing my buttons, it terrifies me how his friends at school will react if he goes round the playground squeeking and making other alarming sounds.

Had a bit of a row with my wife tonight as I'd told him that he shouldn't be doing such silly noises seeing as he's almost six. She says he can't help it but I felt that's not necessarily true, and I think that difference in our understanding or perception will cause a lot of conflict between us. I fucking hate this. I told him off at tea because I was stressed and he was just sat there at the table burbling. I never wanted to be this kind of parent. When I knew we were having a child, I always thought that I wouldn't shout and I would be patient and kind, but it's not turning out like that. I love him so fucking much and it really rips me apart inside. I could have sobbed when I put him to bed tonight and he said 'goodnight daddy'. Oh fuck, what to do?