To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

I agree X2. There was a social worker on that group who thinks that she is superior to NT social workers because only she understands autistic kids 😡 I had to leave the group in the end because she's so pompous and had the cheek to suggest she knows my dd better than I do.

I find that a lot unfortunately no one knows my son better than I do the saying you have met one person with autism means you have met one person with autism is so true !

Yes, it has occurred to me that people with Autism have to adapt every day of their lives. That doesn't happen in a vacuum.

For some people on the spectrum, very basic behaviours in the people around them (like eating, going to the toilet or wearing certain clothes) are a trigger. So people around them don't eat, or pee, or put a jumper on when it's cold. (For however long it is until someone else is available to assist)

To have someone hitting, biting, or pulling your hair, and NOT run away, is never going to be easy.

lavenderjasminerose
Mild’ autism can be a killer.
It flirts somehow with being NT.

I have ASD diagnosed last year. I don't know how mild it is. I haven't had any skills training and there is nothing for newly diagnosed adults at my level of functioning (or rather not functioning). I can see NTs getting on and making friends, but however much I watch I don't learn. I can make acquaintances but I can't even talk to my neighbours about holding a spare key. I basically lack any friends at all. I'm terrified what happens when my parents aren't here anymore.

I have outbursts and meltdowns.
I hate having autism. This is personal to me. I might have some positive traits from ASD, I don't know but I'd forgo them all in a heartbeat to be able to interact socially. I agree I would be a completely different person, but given the physical illness I also have I need to be able to reach out and I just can't.

Of course this just relates to my personal experience- I'd take away my own autism.

I don't think there is anything mild about any kind of autism. I'm HF but I'm a very long way from NT. I see the world and everything in it differently from NT people.

'I'm terrified what happens when my parents aren't here anymore. '

Me too 😢

I don't think there is anything mild about any kind of autism.

I completely agree with this and I’m beginning to despise the ‘low/high’ functioning terms. It doesn't matter how verbal or academic people are, their ASD can still be a severe disability. The term ‘high functioning’ conjurs up the rain main stereotype and it’s creating a lack of understanding IMO.

I understand some people's comments about an autism friendly world helping but even if that was the case I'd still want my son to be Autism free. At nearly midnight he is still screaming, rocking and hyperventilating because he is so hungry but he doesn't like eating. No external factor is going to change that. Many of his issues are completely internal. He is locked away half the time having a battle with things we can't change, we can't help with and that is sole destroying to watch.
I can't know what it is like inside the brain of someone with autism, but I can know what it's like to be me, an autism mum with her own mental health issues who is completely worn out by caring for someone I can't help.

you know, i knew you would be still up because of autism.

I am pissed off and up as ds's dad was unable to do his teeth and I had to . just one fuckingnight of not fighting to do his fucking teeth. you would think I was trying to bloody nurder him instead of save him from pain.

good luck with getting him settled.

Ha I know that feeling well, the wish that just for once someone else could brush teeth, get him in the bath, find the right shoes. Hope you manage to get some rest soon. Between us we have finally found some food he thinks will be okay, so right now at gone midnight I'm cooking as you do.

I am the same op. My dd has SPD and last night it took an hour to just get her comfortable in bed, removing lumps and bumps and "crumbs" and rearranging her pillows until they felt "ok" and then the only dress she will wear (literally THE only dress) is uncomfortable and then she is worried because she saw a spider in her room and started to get increased anxiety about waking up with spiders on her.....

and on and on....I hate it too

And don't get me started on the "high functioning" label. It needs to be done away with. It means that a child can appear to be coping with life, when actually they are not and add a whole new barrier to getting help and assistance.

They are only "high functioning" until they are not.

but I don't think someone living without autism gets to say they wish it didn't exist. Damn right we can, when we see daily, hourly, minute by minute how it affects our children and those living with them.

You're wishing to take away a fundamental part of a person. And your point is? If I could wish away the part of my dd (who is 9) that makes it necessary to hide my sharp knifes/other impliments, I bloody would, in a heartbeat!! Each time I read of suicide I have to stop myself from thinking that that is exactly how I will lose my dd in the future. She is so self depreciating, she has no self confidence, she self harms with objects already, her anxiety is through the roof... Of course I do not know if she would actually do it, but to hear her talking when she is at rock bottom, anything is possible. So please don't tell me that I don't get to get wish it didn't exist.

have the most amazing internally creative mind That is great for you, but that is not everyone's reality. And just as YOU tell me that I have no idea what my daughter is living with, with all due respect, YOU have no idea what my daughter is living with, even less than I do. You are ONE person with your own unique "brand" (for want of a better word) of autism. It is NOTHING like my dd's autism. And you have no right to think you know her better than me because you share a dx in common.

And just as YOU think we have no right to wish it away, you have no right to tell us that we can't. I will never understand what my dd lives with, I'll give you that, because I am not autistic. But you think she is happy when she cries every goddamned night that she wants to die because she hates her life and what autism does to her/us? And yes, she actually does know what dying is, so she isn't just saying words.

You don't think that gives me an insight as to what is happening in her head. Her little head that should only be worried about when she sees her friends next, or what she gets to spend her pocket money on? And not about that fact that we have to go shoe shopping soon, which will mean trying on over 30 pairs of shoes because NONE of them feel even a little bit OK, or that we have to go school uniform shopping soon, and she will have to try clothes on and NONE of them will feel even a little bit OK? But we will have to buy something because she cannot go to school naked and bare foot?

the autistic person will not just be the person you see minus a few quirks. Quirks???? My daughter doesn't have "quirks" Hitting yourself with shoes isn't a quirk, scratching at your body because your clothes feel wrong isn't a quirk, banging your head on a stone wall isn't a quirk...
And nobody ONCE said that we hate our children. So can we please stop with that!?

Differentnameforthis- I'm sorry you have so many challenges, so many which resonant loud and clear with me. We are currently waiting for an assessment for SPD for DS. Sometimes watching his pain and frustration is almost unbearable, it must be so much more painful for him, why wouldn't I want that to go?

Thank you, op. I hope you get what you need with the assessment. My dd wasn't officially dx with SPD, because it isn't a "stand alone" disorder in the medical journals. Her paed simple refers to her "severe sensory sensitivities" but all her makers point to SPD.

why wouldn't I want that to go? I know, right!

Wow, that was an epic rant. Sorry to take over your thread, op.

Once again I am existing on 5 hours broken sleep, and once again I am being told how great and "quirky" autism is. By people who, even though they have it, have no idea what I am living with.

Tired of it all.

Its quite hard to read pages of criticisms and hatred of it. The perhaps don't come on to a thread titled "I hate autism"?

You're complaining that you have to move your boundaries and adapt? Has it not occurred to you that those of us with autism have to do that EVERY DAMN DAY?! Yes, of course they do, but for MY child whose boundaries are still rigid, they take coaxing to move them just a "bit", endless hours of explanation, repeated questioning & answering. My daughter couldn't adapt hers last night, so I had to pretty much take her bedroom apart to prove there were no spiders in her room. (Her anxiety was sky high, because she saw one earlier.) This bought about the need to "straighten" her bed sheets, constantly reorder her pillows, scratch at her body because the anxiety makes her body react to the one dress she will happily wear. Then start all over again just as I am about to leave her room, "are you sure they are gone, mumma" "did you get them all, mumma" And dh (her dad) can't help because she barely accepts him doing anything for her as it is, and he has a phobia of spiders bigger than hers and his anxiety around it will make her worse.

Ha I know that feeling well, the wish that just for once someone else could brush teeth, get him in the bath, find the right shoes. Amen.

Feel free to rant away, it's clearly a need to rant kind of day. DS is still very much up, OH is doing his own thing downstairs because DS won't let him help, I'm trying to keep my voice calm and patient as I explain for the millionth time what our plans are for tomorrow to a child who is so over tired but who will continue to fight sleep for as long as possible ( who also happens to be on the trundle bed in the middle of the room because his actual bed doesn't feel right anymore)

It is Sunday afternoon here (am in Oz) and we are trying to go out. She can't decide which shoes to wear (she only has 2 pairs, and only likes one of those) . I bet she will be shoe less...ohh the joys. Just gotta love the stares I get with that one!

who also happens to be on the trundle bed in the middle of the room because his actual bed doesn't feel right anymore OMG! Dd has taken to sleeping on the floor, in a makeshift bed! (Except for last night, more spiders on the floor, apparently. Except there wasn't) With a makeshift "tent" over her...

I think dd's autism diagnosis was easier for me in some ways because I have autism myself.

Though I did still have those dark anxious periods of 'God, I passed on the curse. It's my fault everything is going to be on hard mode for dd for the rest of her life'

But then, if you offered me a pill and said it would take away my own autism, I'd say no. For all the misery, anxiety and it's caused me (and difficulties it must have caused others) I still wouldn't change who I am. Because it does have it's perks.

It's not our fault all you normies have set this world up so weird

And I'm sorry op yes it does impact on parents massively (my own dm has certainly said she felt like she was breaking many times when I was little, her and Dad used to sleep in shifts)

Sleeping on the floor seems to be really common. My son did it when he was little and I know various friends kids have done the same.

See for me there aren’t huge perks. There autism doesn’t make them who they are they it just makes them more anxious and that’s not fun. Oh and plus the hypermobility that makes things hard or the fact that school and school work is hard.

I’m not autistic. And I don’t have a child with autism. I do have an adult child with SN so I am aware of difference and wouldn’t ever judge.

Can you tell me if there is anything practical I can do in my day to day life that will Make things easier for you and your children?

(I hope this post is taken in the spirit in which it is meant. I’ve been up half the night because of my own MH difficulties and I really don’t want roasted)

Can you tell me if there is anything practical I can do in my day to day life that will Make things easier for you and your children?

What a lovely question! As the autistic Mum of 3 autistic kids I’d say you’re already doing it. That might sound daft, but for me and my kids, not being judgemental and being open to hearing about what affects us and our lives (as I want to do the same with others to make their lives easier) means an awful lot. Thank you.

And OP, I get it. I wouldn’t change my children for the world, but I wish I could make their lives easier. Sometimes I wish I could switch my own brain off because it just won’t stop. So I get it. Lots of solidarity here.

@differentnameforthis if it helps at all I have had some of the challenges your daughter faces in childhood. Self harming being a particular one, anxiety is still a huge part. My self esteem used to be in my boots and it led to an abusive relationship. I was targeted by a paedophile as I was vulnerable. I was horrendously bullied.

I'm not saying life has been easy and sometimes it's hard seeing my kids go through it. At least they know why it's happening, I didn't until last year.

But now I'm an adult I am at peace with myself. I'm not saying the anxiety doesn't suck at times, of course it does. But generally I'm ok. I've had a few burn outs.

But I don't know life any different, does that make sense?

I'd like to say to all of you struggling that where you are now may not be where you end up in the future. My life has changed as I've matured (later than my peer group). Even my son who also has adhd and seemed to struggle far more than the other two with communication is finding things a little easier and is different to how he was before his teens.

This is an honest question about us not setting the world up right. What would an autistic world look like? Has any group of people with autism ever come together to try and organise a community that they love to live in?