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AIBU?

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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:
WorldPeasAndSweetcorn · 21/01/2018 16:27

*because

Original poster
EnglishRose1320 · 21/01/2018 16:36

Sorry my title probably should have said 'I hate how Autism is destroying my whole family' I was/am very low about the impact Autism has on my son and my family. I don't hate everyone with Autism, I do hate the disability that is Autism. Great if you don't see your Autism as a disability, but for everyone I know with is that isn't the case.

OP posts:
WorldPeasAndSweetcorn · 21/01/2018 16:49

I mean, I see it as a disability to an extent. But then again I would be a completely different person if I weren't autistic so to hate autism would amount to self-hatred, something I am trying to unlearn. If that makes any sense?
I am really sorry you and your family are going through a tough time OP Flowers

BishopBrennansArse · 21/01/2018 17:22

@WorldPeasAndSweetcorn cheers, I was considering a name change to mrsdoylesmankyteabag at some point 😂

I do see my autism as a disability although 9 times out of 10 it's due to the neurotypical world making life unnecessarily difficult (not generalising about NT people as a rule but you have to admit things are set up for NT people in this world).

But then I find my physical disability is a disability because the world is set up for able bodied people too.

MrFluffleBug · 21/01/2018 17:53

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WorldPeasAndSweetcorn · 21/01/2018 17:57

Do it! Or MyLovelyHorse... or TeaMaster....or ToddUnctious....
BishopBrennansArse my thoughts exactly

BishopBrennansArse · 21/01/2018 17:58

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ShamefulDodger · 21/01/2018 18:03

I hate to say it, but autism isn't real

(Looks down at self)

Ummm, you sure about that?

Sirzy · 21/01/2018 18:06

Don’t raise to it. Just report.

BishopBrennansArse · 21/01/2018 18:07

Having looked it's trolling other boards too

Original poster
EnglishRose1320 · 21/01/2018 19:15

Can I ask a question to those who had late dx's, what made you think you needed one? I really feel oh struggles with a lot of the same things that ds struggles with but he is adamant that he is fine. Obviously I can't force him to look into it, I just don't think he sees how often his behaviours impact on the family and how his relationship with ds1 isn't great. I wouldn't change him, I wouldn't expect him to change for us but an acknowledgement of the reasons why things are tough would really help if that makes any sense.

OP posts:
BishopBrennansArse · 21/01/2018 19:22

My anxiety. Even CBT didn't help.
Also I've always known I was different, even if I tried I couldn't be like my peers.
When my kids started to grow up just like me I sought diagnosis.
I've made peace with so much because I now know why I am as I am.

Drainedandconfused · 21/01/2018 19:25

I hate autism, my DS is low functioning, he also has mosaic Down Syndrome too. He can’t talk, read, write, dress himself, wash, brush his teeth, use cutlery properly, he’s doubly incontinent, he has the most god awful meltdowns where he shouts and hits me, if I’m not around he hits himself, he’s 12. Life is horrible for us both. Some days I wish I was dead.

Original poster
EnglishRose1320 · 21/01/2018 19:26

Thanks for replying Bishop, oh thankfully doesn't have aniexty like DS, low moods yes, obsessive behavouir and a few other things but not aniexty. In fact parent wise it's me that is incredibly anxious. I think I probably just have to accept that oh is comfortable with who he is, which is great and just learn to live with the ways it impacts on the rest of the house.

OP posts:
KateGrey · 21/01/2018 19:32

@Drainedandconfused hugs.

It’s not autism per say it’s how the condition manifests. For some although they struggle life isn’t hell but for others it’s like hell on earth. Watching my dd scream and cry unable to speak at 5 because she can’t find her hat, or because we’ve not taken the car to school and walked or because her LSA is replaced by a different one. It’s about how fucking hard life is for both my dds. I don’t hate their autism. I hate how their autism affects their lives. It breaks my heart everyday and it’s slowly breaking me. In hindsight although I adore them I’d have never put them or me through this.

Bananasinpyjamas11 · 21/01/2018 20:02

drainedandconfused hugs and Flowers. Autism can be a cruel and awful cage, I’m so sorry for all of you. I do personally hope that for kids like yours they do research and find some treatment to alleviate the obvious suffering and improve his independence.

There is a serious lack of funding into finding or improving effective treatments. Unfortunately I do think the ‘it’s only a difference do not even talk about treatments or cure’ brigade stifle future research.

That doesn’t help you in the short term.

BishopBrennansArse · 21/01/2018 20:15

@Bananasinpyjamas11 I don't think there ever will be a cure. Reason being I don't think we will ever be able to rewire the brain.

I would however welcome treatment to help with the worst elements - anxiety, sensory issues etc, and anything that could improve communication whilst not causing trauma. I'd also welcome adaptation in the world to minimise stress.

WorldPeasAndSweetcorn · 21/01/2018 20:19

i think advocating for a cure for autism is the wrong way to go. obviously i support research into any way of helping with incontinence/scatolia/anything which makes people's lives truly hellish but eradicating autistic people would be awful

WorldPeasAndSweetcorn · 21/01/2018 20:27

Can I ask a question to those who had late dx's, what made you think you needed one?

Because I struggled through my childhood and adolescence - my peers were horrible to me, I hated myself so much i couldn't even look at photographs I was in, on the rare occasions I was told off at school I fantasised about suicide... as a very young child. I would behave perfectly at school and then break down at home and my (mostly lovely) parents were awful to me because of this. Having grown up with your parents telling you that you are a fuckwit and a liar and a nutcase and that they want to send you away leaves deep marks. I feel bad typing that as they are not bad people - they didn't know better at the time. But that's part of why I needed a diagnosis.
In my teens I was misdiagnosed with mental health issues I didn't have and now have PTSD due to what i endured as a result of this. I need reasonable adjustments in my studies etc, I need to be able to access welfare. And I needed to know for my own healing process that when I was a child or a teenager being treated as an object of disgust by my peers, it wasn't my fault.

I hope that makes sense Blush

WorldPeasAndSweetcorn · 21/01/2018 20:29

and I hope that also explains why I am quite sensitive to people saying that they hate autism

BishopBrennansArse · 21/01/2018 20:34

@WorldPeasAndSweetcorn I can relate completely to the childhood social experience you recount

SukiTheDog · 21/01/2018 20:36

I would like something to take away ds’s anxiety. He doesn’t leave the house anymore.

SingaSong12 · 21/01/2018 21:48

Can I ask a question to those who had late dx's, what made you think you needed one?

I decided to seek diagnosis because I'm pretty sure I will need help as I get older. My physical problems mean I'll need the help, the autism (and lack of diagnosis) means I have no friends and think I'd rather suffer than ask a neighbour for help. I seem to manage if it is the persons job to help me. I guess because I know tthe structure of that interaction, like how a doctor appointment works, but just going next door would be a nightmare.

There may not be help, but if there is any I'll probably need formal diagnosis in the background to access it.

SukiTheDog · 21/01/2018 22:38

Sing, that’s an interesting point.

I was diagnosed 2 weeks ago. I suspected when DS was diagnosed 14 yrs ago but my gp laughed me out of the room. So, last Nov, I saw a different gp who referred me. I needed to know for myself. In my heart it was already a known but now, it’s official. I have never fitted in. Never “got it”; “it” being people, social situations, basic interaction. I learned to act or mask, very well. Oddly, I’ve not told anyone other than DH because it didn’t seem important. But, it might be, in future and most importantly, I know. And it makes a lot of sense.

Devilishpyjamas · 22/01/2018 07:20

I don’t think research is being stifled really. It’s cracking on and the idea of autisms (not autism) is beginning to become much more central to autism research (thank god tbh - then we can move away from discussions of whether it’s a difference or a disability and recognise that autism is a false construct so it can be both).

I haven’t really looked into genetic diagnostics since ds1 had his microarray a decade ago (which showed nothing) but have just stared looking again after a friend mentioned whole genome sequencing as a way of improving epilepsy drug selection (could be revolutionary for ds1 as we don’t know how much of his issues are caused by epilepsy but I suspect it isn’t as well controlled as it could be). But having looked I was struck by how much genetic lab techniques have improved (I used to work in a genetics lab - so particularly interesting) and whole genome or whole exome sequencing is now ridiculously fast and can pinpoint changes. In the U.K. it’s still very much research lab based so tricky to access for clinical need (but can be), but in the States it’s become more of a routine clinical technique.. Give it another decade or so and I reckon it’ll be a fairly standard diagnostic technique.

My son has had two fairly major regressions in his life, and I would certainly welcome more understanding of whether he can come back from this second one - for starters it would help with putting together the necessary care package. Also would help to know why. That may be the sort of information that will eventually come out of this new work (although more for future generations than him - but anything to avoid someone else going through what he has tbh).