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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To hate Autism

650 replies

EnglishRose1320 · 13/01/2018 15:19

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.

OP posts:
expatinscotland · 13/01/2018 16:38

You are SO not being unreasonable. It's fucking dire. On top of DS's autism, DD1 died. I hate my life and hope I die soon. We live in a poor council with no support system at all. And no, we can't move.

Evelynismyformerspyname · 13/01/2018 16:45

I do think "society" forgets about the people with autism who are not high functioning or have coexisting diagnosis. I don't have much direct first hand experience of high functioning autism but work with two adults with both autism and Down-Syndrom. The combining of those two certainly creates individuals who don't match the stereotype society seems to have of either one, yet I've learnt that it's actually quite a frequently occurring combination.

OhHolyFuck · 13/01/2018 16:46

I'm too tired to talk about it all - the managing DSs behaviour, the advocating and fighting on his behalf, the reading and learning and trying a billion different techniques, the being the punchbag in every way, the disappointing ds1 because ds2 just couldn't cope with what he wants to do and since there's only me to parent them both....

I'm sorry @expatinscotland Thanks

Sirzy · 13/01/2018 16:49

Ds is supposedly High functioning. I hate that label with a passion as people take it to be a reflection on how they are able to cope. It isn’t.

MelanieSmooter · 13/01/2018 16:50

I hear you English I hear you. I have 2 DSs with ASD and I work in a specialist ASD unit in a school. I see how most of these kids hurt and I wish I could take it away for them. We’ve had many issues with DS1 but nothing has prepared me for just how much some of the DC at work suffer. It’s horrendous Sad

Nikephorus · 13/01/2018 16:52

There's the less talked about self harming, shit smearing, violent side of autism that is heartbreaking as a parent or career, not to mention as the individual.
And a lot of this is due to the stresses of being forced to live in a neurotypical world. I don't think all you non-autistic people understand how difficult and frustrating it is, or how difficult it is to communicate that.

lavenderjasminerose · 13/01/2018 16:53

Yeah, I don’t give a fuck about the quirks honestly Angry

Devilishpyjamas · 13/01/2018 16:57

My son is very severely autistic (non-verbal, severely learning disabled ) and currently in Hospital sectioned 8 hours from home.

His life is pretty shit right now (understatement). But four or five years ago it was really very good. He was still non-verbal and still severely autistic (although no epilepsy then - I do hate epilepsy) but he had a great life.

So I don’t think I hate autism. I hate whatever has made his ability to self regulate disappear (epilepsy? meds? illness?). I hate that I only see him every other week for a few hours (until admission the longest I’d been away from him in 18 years was about 2 days). I hate that he went from the school ‘success story’ (their words) to really barely being able to function very very quickly. But I don’t hate autism. He hates autism - and that’s a bit of a problem tbh.

I hope that he can regain some of his self regulation. If he can then he can have a great life - even with severe autism. If he can’t then I don’t even want to think about the future.

I don’t think there’s anything wrong with saying you hate your version of autism anyway - it’s many conditions so hating what you’re dealing with doesn’t say anything about the other autisms.

Teufelsrad · 13/01/2018 17:01

YANBU. I don't have a child with autism, but I have it myself and i detest it. I'd get rid of it In a minute, and my dyspraxia.

I don't expect anyone else to feel the same. It's a different experience for everyone but sometimes I'm made to feel like an outcast in support groups and on social media because I hate mine. It's a disability for me and not merely a difference. I can't think of any advantages in my case.

x2boys · 13/01/2018 17:09

I don't think those at one end of the spectrum can understand what its like for people at the other end everyone's different my son's happy enough but he's non verbal he wears nappies he goes to a special school I love him to bits but I do worry about what will happen to him when I'm not here Sad

x2boys · 13/01/2018 17:10

Can't understand *

Slanetylor · 13/01/2018 17:12

I do think many high functioning people with autism are happy enough with themselves. But being the parent having to clean shit off their walls and clean their bite marks will of course have a different perspective in the whole thing and are fully allowed to. The experiences are worlds apart.

Branleuse · 13/01/2018 17:16

yeah of course there are negatives to autism, but most of those are because of trying to fit a square peg into a round hole. Sometimes I just wish it was the shape of the hole that got criticised instead of the peg.

I know it can be very hard to fit into this society and to parent children who might never fit in, when you have so many expectations to mould them into acting not autistic. Its quite hard to read pages of criticisms and hatred of it. Possibly the sort of things to admit to your close friends who are going through it too. Not give extra ammo to the rest of the world to stereotype, misrepresent and feel sorry for even more.

BishopBrennansArse · 13/01/2018 17:22

@HangingRoundInABofAlorsStance sorry had to take my mum to the doctor

I was diagnosed last May at the age of 38. When I was little I never had tantrums only went really quiet and 'shut down'. I used to do odd things like smearing, sniffing things, hoarding, make funny noises and hand flap but they put that down to being deaf. My social relationships were blamed on that too.

Always happy to answer genuine questions 😊

Teufelsrad · 13/01/2018 17:23

I'm the opposite Branleuse. I'm grateful to be able to say that I do hate my autism on here. It's practically taboo in some called support groups. I don't find it helpful to be forced to pretend that I'm ok with it, that for me it's a positive thing.

Your feelings are still valid of course, even if I don't share them, but I personally don't find it helpful to silence any voices,regardless of which side of the 'debate' we're on.

BishopBrennansArse · 13/01/2018 17:24

@Nikephorus I'm nodding at your responses

Finalpaoa · 13/01/2018 17:24

Possibly the sort of things to admit to your close friends who are going through it too.
what if they don't have close friends going through it, or no time due to caring to meet up with friends to discuss it.
Talking online is going to be the only option for lots of people with asd (like me, i can't make friends due to the asd crap) or parents of kids with asd will be able to communicate and the negative should always be able to be discussed as it can be overwhelmingly negative for a lot of people and they need that online support.

BishopBrennansArse · 13/01/2018 17:25

@Slanetylor I've had to do that with two of my kids so I can understand.

But the cause of that was something the neurotypical world did to him.

Original poster
EnglishRose1320 · 13/01/2018 17:30

Thank you to all the replies. Sorry to everyone going through a rubbish time like me. Lovely to hear some adults with Autism like their condition, sad to hear some adults don't and still struggle.
Atm I dislike my son's Autism all the time but I never dislike. It's because I love him so much that it bothers me.

OP posts:
Original poster
EnglishRose1320 · 13/01/2018 17:30

Thank you to all the replies. Sorry to everyone going through a rubbish time like me. Lovely to hear some adults with Autism like their condition, sad to hear some adults don't and still struggle.
Atm I dislike my son's Autism all the time but I never dislike. It's because I love him so much that it bothers me.

OP posts:
GingerIvy · 13/01/2018 17:33

I would rather see the world more tolerant of all the differing presentations of autism. This includes my ex, my ex's family, my ex-friends (who became ex friends due to their lack of tolerance and acceptance), the government, the schools/LAs, some (but not all) medical professionals, people running sports/clubs/activities, people in shops, museums, and everywhere out and about.

I would like to see parents (especially mothers) not accused of poor parenting when their child has autism (or other special needs) and be sent to parenting classes before they are offered support.

I would like to see children with special needs supported in schools, rather than schools/LAs doing the "dodge the financial responsibility" dance and allowing the child's education to falter and fail, which can have lifelong repercussions.

I would like to see the people that prey on desperate parents by running bottom dweller organisations that peddle dangerous fraudulent "autism cures" arrested and put in jail.

Spikeyball · 13/01/2018 17:35

I would take away the things that make my son's life difficult. Some of his distressed behaviour is caused by things such as being hyper sensitive to internal body sensation so I can't blame the nt world for everything.

MelanieSmooter · 13/01/2018 17:40

It's practically taboo in some called support groups. I don't find it helpful to be forced to pretend that I'm ok with it, that for me it's a positive thing.

This with bells on. Sometimes we need to stand up and admit that dealing with any illness or disability - either as a parent or the person with the condition - is shit. It just is! We need to start saying that it’s OK to not be OK.

oldbirdy · 13/01/2018 17:40

We need different ways of expressing what autism is to different families. Maybe different words or different conditions (Asperger's, anyone?). Because to me and my family, autism isn't terrible. It really is a difference that causes some vulnerabilities. I read about "don't give a fuck about the quirks" and it dismisses our experience of autism, which is just as valid as yours.

So no, you aren't unreasonable to hate your experience of autism, but you would be unreasonable to hate "autism" full stop, because not everyone's autism is like your son's. Just like I'm not unreasonable not to hate it.

NeopolitanChocolates · 13/01/2018 17:43

Yanbu Sad