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.

No, but those people you are referring to are high functioning but severely affected. That is so very different from low functioning and severely affected.

Ok. Well I apologise if I've offended by trying to give an autistic point of view.
I'm out now.

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

Im sorry for the heartbreak you and yours are going through right now.

Ive no experience of grief but to be honest its something I think of given Im now middle aged and so is my husband.

There is a publishing company by the name of Jessica Kingsley and I know they do books on bereavement. And whilst Im not suggesting for a minute that a book is going to make everything better for all of you it might just give you a starting point to helping your boy, and yourself.

Im really sorry such an awful thing has happened xxxx

You haven't at all offended me. I'm trying to point out without offending you that your autism means you see autism as your autism whilst generally acknowledging that others will be more/less severely affected than yourself.

I am just trying to point out that some autism is so far dramatically removed from your experience as to be an entirely (IMO) different, hideous condition. In no way does that mean I'm suggesting eradicating who you are but rather eradicating the 'thing' that makes my child so severely disabled.

I can't reply to posts individually as its getting late here so perhaps the answer to the same old same things being said time and time again is for there to be a truce and for those on the spectrum to accept our version of what we mean, and for us to accept their thoughts on it all. Then it need never be mentioned because its one of those things that we all understand.

Late to the thread but happy to see my people. (Waves to all the "familiar" faces)

Half term has been fucking exhausting. I'm drained and really tearful today.

Ds1 is high functioning and has basically cocooned himself in the house all week to rest from the pressures of school. DH has worked all week and it's impossible for me to take the 3 of them out alone for day trips, it's unsafe and usually only lasts about an hour before we have to end it.

Ds2 is really severely affected, he's almost 6 now and the lack of school routine has completely thrown him. (We can't prep him, he has no concept of time, fucking visual timetables do nothing). He's compensated for this by attaching himself to me constantly, to the point that he has a meltdown every time I attempt to get up off the sofa away from him to leave the room, so I've had a tall, heavy 5 yr old sitting, crawling and lying all over me for a week.

I could cry I'm so worn out, but I don't think I'd stop. And to top it all, our sweet, beautiful NT DD yet again has to try and talk to me over her brothers meltdowns and endless demands just to try and get some interaction with me

Thankfully we're in the process of an application for respite, and the boys sleep reasonably okay-ish, which is no small thing, but my god this week has taken its toll. for everyone.

Phil, I want to thank you for putting forward your point of view. It does make a huge difference to many people to know that not everyone equates word autism with word faulty.

I understand that people trying to survive hell need to be heard. Thing is, I don't think that people in general need to be told that autism can be hell.

They do need to be told that it isn't always though. People whose DCs will never be able to live in the NT world might not have any energy to give a shit about NT world's prejudices. Those of us whose DCs stand a chance of integrating to some extent , who are in fact desperate to learn how to survive among NTs do have to give a shit.

With just a little insight from the ASD side... Unless you specifically say you are referring to High functioning or Low functioning most of us on the spectrum will assume you mean the entire spectrum. As unfortunately we can't really differentiate for ourselves depending on your tone/etc or even fathom it out due to what your own children may suffer from. Our "wires" get crossed pretty easily. Unless you say "i am referring to low functioning" (like it has now been mentioned) we won't really get it.

When i first came to this thread i assumed it was regarding the whole spectrum due to the vast array mentioned in comments. I don't think i can comment on anyone's behalf that is low functioning and have no idea what life like that is like, i think you have every right to call it a bastard, or anything else because it's you dealing with how shit it is. But please try to keep in mind we will also struggle to word things (i say we as a generalisation and if this doesn't apply to anyone on the spectrum i do apologise but i have found this to mostly be true and mean no offence at all) or process what you're saying unless it's very direct. So those on the spectrum here that may have taken offence or became upset at the "i hate autism" type comments aren't trying to belittle those trying to cope with low functioning children.... We just had no idea if you were referring to only low functioning people as it originally wasn't typed out word for word. I know that's a bit of an inconvenience (and believe me we're used to it being a nuisance) but hopefully it explains a little

i am not trying to speak on anyone's behalf if you feel that way please know i have directed nothing at anyone in particular this is referring to many different posts after reading back through (kinda have to put that in because i know i can be blunt and it can be taken the wrong way).

I agree with Dixie!
I actually think it's our experience of autism that the world needs to be educated about. Most people in the NT world, when they think about autism they think about Rainman or savant abilities or the young man currently on Holby City (HF, clever, is seen as funny as he takes everything literally) So, in my experience, the overriding world view of autism is more in line with Aspergers than with severe, low functioning children whose families struggle Just to keep everyone safe each day, make sure everyone has eaten, make sure there isn't faeces hidden under pillows or behind curtains and spend each night praying for sleep.

Look, that's not to say I don't give a damn about the struggles faced by those who are HF. I've already acknowledged that I understand you can be HF and still severely affected. And even if you're not, I totally recognise that it's still a disability with all that entails. I also understAnd that the dealing with the NT world must be painful and difficult and that it's not something my child will endure.

However, I do not, and honestly never will understand how parents can argue that they embrace autism and that they wouldn't change their child. Because if my child was the high functioning child weeping from anxiety, having suicidal thoughts and constantly struggling with sensory overload, the I would do anything in my power to wave a wand and release my child from that pain.

Long I wish i could wave a magic wand too, for any of us. It obviously isn't as horrid being HF but it's shit all round let's face it. I don't find any form of ASD to be "cute and quirky" like portrayed in the media and i think there needs to be loads more awareness about LF because noone knows the hell you must be experiencing (except others in your shoes).

You know how people are like "oh i have OCD" when they have to knock a couple of light switches or something? I feel like sometimes ASD is starting to go down that route for people and they need to know how severe it can be.

As a HF if someone could rid me of it... I would want that, not sure why anyone would like to keep it

Or Dr Sheldon Cooper ?

I think you forget - or did not know in the first place - is that "mild" or "high functioning" autism - what used to be called Asperger's and what can now be seen as an endearing oddness thanks to aforementioned media portrayals - actually can, and does, have days, weeks, months, hell, years - when the reality is that when you come to the end of the day with the same number of family members as you started out with, you call it a good day. Even if it did involve a trip to the A&E and a need for some new internal doors.

And this is the reality that, IME, people used to picture when they heard "autism". Even Rain Man made a big deal of the fact that he had to live in an institution, and that his brother was stupid for thinking he could live with him instead.

This is why I am grateful for Dr Sheldon Cooper. Whilst he has a comedic panic attack instead of a none-too-funny meltdown - being fictional and all - knowing that there are now people around who will accept DD's "quirks" instead of running away in case she decides to start stimming or hurl herself against the wall is not a bad thing - because once you know the person you may stop seeing them as a syndrome.

This is still an uphill struggle though, and we are still only taking baby steps. I really do think that concentrating on the positives wherever they can be found can only help with this. It is very hard for people to accept people with autism as people if they get the impression that even their parents would give anything for them not to have it. Sometimes the only way we can help people change their attitudes is if we change our own first.

It just feels really important to me to educate NT people that yes, there is this thing called autism, and yes, it can be really hard, and yes, people who have it will always be different to the NT majority, but that's actually OK. You do not have to hate it, you do not have to fear it, and they are still people, with as much worth and value as the next person.

However, I do not, and honestly never will understand how parents can argue that they embrace autism and that they wouldn't change their child. Because if my child was the high functioning child weeping from anxiety, having suicidal thoughts and constantly struggling with sensory overload, the I would do anything in my power to wave a wand and release my child from that pain.

Because there is no wand. The only thing you can change is your attitude, and sometimes attitudes of those around you.

Because, when attitudes of the majority are changed, and reasonable adjustments made, the sensory overload can reduce to manageable levels and the anxiety abate if you know that people are not thinking you are a freak, rude, crazy or inconsiderate.

Because your child considers their autism an intrinsic part of their identity and has asked you to be accepting of it, and them.

There is just nothing else you can do under those circumstances.

Walking Blind - if someone was to wave a magic wand and instead changed the world so it would be acceptable and accepted for you to do anything you need to do in order to feel good at any given time - if people left you alone when you wanted them to, yet be friendly, approachable and understanding if you did at any time need them - if no one judged you or expected you to be something you're not - would you still want to have your AS taken away ?

My dd has just been admitted to hospital today. The world cannot adjust their attitude to reduce her sensory overload, her severe anxiety and her irrational, intrusive thoughts.

No manner of adjustments would make her life tolerable right now.

I'm sorry, I'm feeling raw and sad and desperate. Please don't judge my comments.

Thornrose and DD

Thronrose, I hope a treatment plan is put in place for your daughter and whilst this is probably a very scary and upsetting time for her, and for you, hopefully it will mean her life takes a turn for the better.

As for not judging you??? Its dreadful you felt you had to say that and my reply to you will only ever be - who cares what people think?

I'm really sorry to hear that, Thornrose. When things get that bad, hospital is probably the best place to be. Or at least,the least worst. How old is she ?

notonyur I think you were on a long running thread where we talked about our dc and their mental health? I lost the thread.

Dd is 16, she was placed in an observation room and considered a threat to the other young children on the ward.

I'm panicking that her life is going to be a cycle of hospital admissions and mental health issues. I'm just panicking about her full stop.

Sorry but the world would literally have to be muted, dimmed, etc for it to be comfortable. The sun rising in the morning, people talking to each other in the street, the sound of children laughing... Everything is intolerable

Thorn

Dixie As a child that was the approach taken with me (that the other parent suggested), i was treated as a "naughty child" my entire childhood, you sound like a great parent