To cry because I hate autism

[PotterBot]

Just took two dad's to the cinema. I checked 40 times at least with eldest dd about the film. X-men.

We lasted less than 45 minutes before we had to leave.

Too many people, too much noise and a film about the end of the world.

I feel like I'm doing it all wrong. Younger dd upset because she had to leave and wants to stay.

I know that in the bigger scheme of things dd could be so much worse and this could be so much worse, but right now I want to cry.

Msqueen I'm here if you want to talk

That's what I miss the most talking to RL asd mums, feels I'm the only one sometimes

Msqueen PM me any time

SpanishLady my son is like yours. I find life goes in waves. We are currently riding on a high wave, my son is coping well, things are working. Suddenly something will happen, the wave crashes and we all get pulled under for a while, until we can ride another wave. Sometimes in those moments I feel like I'm drowning.
My son is learning coping strategies. We live in a small community where everyone knows him and are very supportive.

PotterBot I have no advice for that, I have been told I only love one child, that he's spoilt, that everything I do is for him. His siblings have nicknamed him king. But as they are growing older they are starting to understand more, giving him more love and support and are doing things that lessen the blow, rather than feeling hard done by. If that makes sense. Sorry you have to deal with a prick of an ex.

Is Devillishinpajamas here?

Yes Ninja, that's what it was.
FWIW, every other aspect of the thread I can relate to, and the tone of the thread has changed now, thankfully.
I have 2 DC with ASD, 1 NT (who can be quite baffling) and another I suspect has ASD.
The 2 with ASD hate each other and want to kill each other, or at least wind each other up to meltdown constantly, their needs, although similar, clash, so if I get it right with one, I'm getting it wrong with the other. Separating them is often the only option, but then means that I can't give everyone the attention they need.

One of my fantasies is to own a prison van with separate, soundproof cubicles for each child to travel in, it would stop them pissing each other off and would make driving much safer.
I think parents of NT children cannot grasp the relentlessness of parenting DC with ASD, and can't comprehend that their methods won't work for all children.

I did smile wryly at the prison van idea, Phil! :)

I get into these silly cycles of with my kid. I tell her off for something, she repeats it and it becomes some kind of safe, understood interaction for her that must be repeated ad infinitum. She chants NO DON'T DRINK YOUR SHAMPOO and then heads off to the bathroom. It is something I do have to stop her from doing it so the 'don't react' thing doesn't work. If I remove the shampoo she'll go for somerhing else- kicking the window or turning on the oven. Tbf even six months ago she could not have even said those words so I should be pleased but it just feels as though we are acting out the same thirty seconds of an inane pantomime over and over some days.

PotterBot, I usually try to say to the others that I don't love DS3 more but that he does need me more. The older 2 complain less now than they did. DD doesn't really know any different. I know the hardest part is they they cannot have friends around much as ds3 can be very aggressive and strangers in the house trigger a meltdown. A couple of times a year, DH takes ds3 out in the car for a few hours and ds1&2 have friends round after school. They also find it hard listening to all their friends take about their great holidays when we are severely limited as to where we can go. I desperately wish they had any living grandparents as a weekend at GPs would be such a lovely respite for them.

Ninja I also have to force contact with toddler and turf her off, it's soul destroying but you just can't help it

Snap. Been (yet again) a shitty half term bar the respite

YANBU to cry because it's all just too much. Been there, many times.
YANBU to hate how your daughter's autism is affecting her, you and the rest of the family.

However, YABU to phrase it in such a vague way that the AS brain is hearing it as hatred of people with autism. Many people on the spectrum, whilst certainly not "their autism", do find it is such an inextricable part of who they are that you might as well say you hate their gender, or skin colour, or nationality. It's puzzling, and hurtful, and easily avoided by just being a little bit more specific when targeting the source of your frustration.

BTW, I also never could identify with the "Holland" essay. Holland is a nice enough place, I've been many times and would happily go again.

Beirut now... Ah, that I can click with. Because my, admittedly superficial, knowledge of Beirut, is that it's a dangerous, inhospitable place that I would NEVER willingly go to.

But then my ex SIL married a man from Beirut and went back there to visit his family. And she told me that Beirut can actually be quite wonderful

IF you are not there when there's shelling going on
IF you are open minded and willing to learn local language and customs
IF you do not assume that being different equals being faulty
IF you have a native guide
IF you accept that it's an inextricable
part of your loved one's identity and are prepared to love it for their sake.

So yeah, Beirut I can click with. Especially since, no matter how much you grow to like it, you can still hate being there and wish you were somewhere safer if someone decides to trigger off shelling and destruction just because people who live there are different to what they think they should be.

However, YABU to phrase it in such a vague way that the AS brain is hearing it as hatred of people with autism

perhaps those on the spectrum need to believe us when we tell them their interpretation of it isn't the same as ours. I mean. We say it here often enough.

Re Beirut. I have family there and I'm just back from a long weekend about 6 weeks ago. I also love it despite it being the place my cousin who married a Lebanese bloke more than 40 years ago was shot dead taking her children to school 30 years ago. It just gets under your skin and is an absolute bonkers place despite its press

Allegra, I can't agree, sorry.
I would cure this hideous thing in a heartbeat.

Perhaps it's time to agree that severe, low functioning autism is simply not on the same spectrum as AS. They are so vastly different in so many ways.

Has anyone had experience of grief in a severely autistic non verbal child? My dh died six weeks ago and our four year old is pining terribly for his daddy as am I. He sobs for hours and looks out the window shouting daddy. His school /bereavement charities etc can't advise me. Just tell me to say daddy doesn't live here anymore.

Noton, I only posted because at some point, these autistic children will be grown up and may be posting on threads like this, and might well feel the same that I felt (and other autistic posters).

I (and others) have explained that we understand, it's hard, we are experiencing the same things with our children, but from an autistic point of view, reading posters say how much they hate bastard autism is hurtful, because like it or not, it is a part of us that will never go away.
Saying "we say it here often enough" doesn't make it better, because it only means that despite knowing how it feels you still insist on saying it. I get that your interpretation isn't the same as ours, but when we've explained how it makes us feel, how it could make any other poster's child feel in the future, and in a thread full of parents of autistic children, I'm quite surprised that you think we are wrong in saying that it was hurtful.
I'm not trying to be inflammatory at all, but as a parent of autistic children, if someone said to me "actually, to an autistic person that's hurtful" I'd be pleased that someone had explained, and I would avoid doing that in the future because I wouldn't ever want my child to be confused about my feelings towards them.
I am a nice person, not confrontational at all, but this thread has struck a chord for me, and I really want to explain what I mean, but probably doing it in a roundabout chaotic way!

He has a poor understanding of language and global development delays.

Daffy I'm so sorry. Could you try ringing the NAS helpline? They're usually very helpful at pointing to the right direction.

You would think so but they can only advise on older high functioning children apparently.

Really? That's shit!
Could you try going through your GP, or paed or HV, although I imagine the last thing you need at the minute is ringing round for support.
Are you on any FB groups? I've found there's usually someone with some nugget of advice.

NotOn, I do hear you - but aren't NTs supposed to be the ones that are more adaptable ? So why not adapt, in response to feedback ?

NT, I appreciate that my day-to-day reality may be very different to yours, but they still have much, much more in common than my reality and reality of someone who only parents NT children. I have been in a position where I felt the same as you do, but then my daughter asked me to stop. I still feel it about her anxiety, OCD, and BPD. So does she. Difference is, she does not feel that any of the above define in any way who she is, whilst autism does. This is why I can't let it go, or agree with it.

(My DD would say at this point, I will agree to disagree, but you're wrong )

Daffy, I am so sorry. Nothing useful to offer, unfortunately - but I do hope you can find someone who can help.

Daffy I am sorry for your loss and have no advice. Have you tried Winston's Wish? They were very helpful for the siblings of a child I knew. It may be that the have some SN knowledge or an SN advisor.
I hope you have some RL support!

Noton, I only posted because at some point, these autistic children will be grown up and may be posting on threads like this, and might well feel the same that I felt (and other autistic posters).

Phil, no, they won't. They are so severely affected that such a thing is seriously unlikely. To you, autism is being different. Thinking differently, seeing the world differently, perhaps being a bit quirky. Struggling with the NT world=yes
Struggling with over stimulation=yes
Struggling with sometimes horrendous anxiety=yes

To you that is autism. But it is not autism, it is your autism. My DS is severe, low functioning with GDD. He does not suffer from anxiety or worry about social situations. He has zero interest in the NT world. He will never live independently or have his own family. His related bowel issues are so severe that he spends a lot of time in pain. He is unlikely ever to be continent.
Your autism may well not be a bastard but his certainly is.

Longchalk, fair enough, but I have to say on some of the groups I'm on, there are posters who wrote very insightfully who are non-verbal and have very high care needs and will never live independently. They may not ever cook a meal, wash themselves, go out alone, but they can still write meaningfully about their experiences, and can still read about others' experiences.

Of course not all people with asd will get to that point, but that shouldn't mean that i can't say what I feel, and it definitely shouldn't mean I can't advocate for those whose experience of asd is more severe than my own.