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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wish autism didn’t exist

92 replies

Etherized · 05/03/2018 13:33

How can you even start with it all?

I am finding it so hard and trying to be a parent to one who will never understand.

OP posts:
SomethingNarstyInTheWoodshed · 05/03/2018 15:24

I’m with you Etherised.
It may be wonderful to embrace differences and celebrate actually surviving another week a stronger person. but I’d banish it in a heartbeat for just a bit of ordinary.
DD is amazing, strong, growing and achieving now. But getting here has screwed us all (parents, siblings and DD herself) up completely.

x2boys · 05/03/2018 15:25

Autism isnt just one disabillity it is many when you have a child who can't speak isnt toilet trained at nearly eight as in my son's case it can be very difficult to see the positives .

fuckoffsnow · 05/03/2018 15:29

I'd get rid of my autism in a second. I've spent the best part of a week on the edge of meltdown because of the extreme weather and the way it's fucked with absolutely everything. And in normal circumstances I find it really hard to make friends and socialise. I'm full of anxiety and have to work incredibly hard to make sure it doesn't impact the DC.

And then the real kicker is when I start noticing my traits in them.

BishopBrennansArse · 05/03/2018 15:35

I like mine.
I'm sorry you're finding it tough though, OP.
I know in the early days before I knew about my own autism I was told terrifying things by the professionals. Real life was never as bad as that, though.

Even my most severely autistic child can now communicate with me using words. Sometimes not until the meltdown has passed, admittedly, but it makes minimising the stressful stuff easier. Maybe finding a communication methods could help, PECS or something? My kids started that way.

Original poster
Etherized · 05/03/2018 16:21

Is it possible I wonder to accept that the difficulties autism causes me and indirectly other family members are misery inducing and just to accept that without straying into ‘what you are really saying is’

As a baby they would scream if I picked them up but howl unbearably if put down

Nothing has changed!

OP posts:
anxiousmumtobe33 · 05/03/2018 16:21

Sorry Etherized but who are you to tell me that my son will not achieve his potential? What does that even mean?

You can be as angry at autism as you want but that doesn't give you the right to start making offensive sweeping statements. As you can see, there are many parents of autistic kids here, some of whom are autistic themselves. It's not your place to say they're not living life to the full.

FWIW my 3yo autistic son has been talking into a tv remote for the last thirty minutes and cackling with glee at how clever he is - he really is content and living his best life atm.

x2boys · 05/03/2018 16:24

I think Op was talking about her own child anxious?

soapboxqueen · 05/03/2018 16:25

I think you'd be better posting in SN or pretty much anywhere else than AIBU.
..
Some aspects of living with autism are difficult no matter how 'high functioning' someone is perceived to be. There are challenges and sacrifices for sure. There will be many who agree with your thoughts about erasing autism.
...
I am not one of them. If I erase autism I erase who my son is. Most of the problems we face are not actually too do with him. They are to do with services not being in place, him not being understood and people being shitty.
...
This is a continuous argument between different factions within the autism community. Those who have a family member severely affected by autism and those that are (or have a family member) deemed 'higher functioning'. Those in the first group are accused of being negative and having low expectations. Those in the second group are accused of either not really having autism, being dismissed from the 'real autism' conversation or acused of having unrealistic expectations. Etc etc
...
This is why I stay away from autism groups often run by parents and stick to the ones run by actual autistics. Some groups are generous enough to allow NT parents in and are far far more useful.

Knitjob · 05/03/2018 16:32

As a baby they would scream if I picked them up but howl unbearably if put down

That sound so hard. I think yanbu to wish autism didn’t exist in the way it does for your child, yourself and your family. It sounds hard and exhausting and with no realistic hope of significant change.

BishopBrennansArse · 05/03/2018 16:34

It's also possible that an autistic person's potential is different from that of a neurotypical person.
I've never had expectations of any of my children even before diagnosis and yes I do have the concern that one of my children will never be completely independent so I'm not from a family of solely high functioning individuals.

Shedmicehugh · 05/03/2018 16:39

Yabu to wish autism did not exist for you.

I’m not entirely sure what you want from this thread?

SumThucker · 05/03/2018 16:43

I agree with the wishing it didn't exist, yes.

Original poster
Etherized · 05/03/2018 16:44

I’m not angry.

I’m resigned.

OP posts:
Shedmicehugh · 05/03/2018 16:44

Sorry that should have read YANBU

Paddington68 · 05/03/2018 16:59

Sometimes I think would it be better if you could say my name.
Would it be easier for me if I didn't have to explain to people, including my parents that you aren't spoilt?
Sometimes I really don't want yet someone else telling me you are walking through puddles with no shoes on.
But shoes are ok this week, and coats are too and you even managed wearing pjs and a dressing gown and a coat, when it was bedtime day at school. And we have that coat in the next three sizes up, because we've learned that from others that have walked this path.
And I don't really understand why you don't like Wotsits on your plate, but they are fine in a bag. Is it the orange?
And I know that if I leave my phone out I'll find the memory full of 48 selfies that you have taken.
Sometimes I think just dive into the ball pool instead of collecting all the balls that come out of it and returning them one by one by one.
And then yesterday you worked out that you can carry more than one ball at a time and I watched you as you collected lots of them in your arms and returned them.
Sometimes I have been honoured to meet others on this journey, and sometimes I have measured you against them and thought myself lucky or unlucky depending on the measure; and I have hated myself for it.
Sometimes perhaps it is me and not you, who needs the special school.
When you have met one person with autism, you have met one person with autism.
x

Original poster
Etherized · 05/03/2018 17:03

It’s lovely but I’ve met, oh, hundreds of people with autism now.

Sad
OP posts:
Didiplanthis · 05/03/2018 17:11

It's not unreasonable to wish your child wasn't going to have to struggle. I dont wish my child wasn't him but I wish he could make and sustain friendships, I wish he wasn't so distressed by simple things, I wish his siblings weren't having to deal with this. I wish things were easier. If that meant no autism then yes I could do without it.

Shedmicehugh · 05/03/2018 17:18

I’m still not getting what you want from this thread OP?

Paddington68 · 05/03/2018 17:21

Shedmicehugh Maybe she just wants to share how she feels. That's ok with me.

EggysMom · 05/03/2018 17:23

I have days like this too, OP. Brew Flowers

Original poster
Etherized · 05/03/2018 17:23

Clearly, I want my child cured.

What, you can’t do that?

Thanks paddington Smile

OP posts:
MattBerrysHair · 05/03/2018 17:23

Your feelings are as valid as anyone's and you're a worried mother who hates seeing their child suffer. I can't see why anyone would chose to be offended by your words since you are clearly referring to your own situation and not passing comment on anyone else's.

I have autism and I suspect ds1 does as well. I hate the pain and suffering that being autistic has brought me, and now my ds, but I love other parts of it. The anxiety and depression has been horrific at times, and seeing my beautiful, bright, caring boy begin to suffer too is gut churning. I just hope that since awareness of autism is so much greater now than it was when I was an undiagnosed teenager, my ds will be spared a lot of the suffering I experienced. He doesn't like himself at all. He constantly compares himself to others and focuses on his differences in the most critical way. No amount of praise, love bombing, positive reinforcement or listening makes any difference. I dread puberty and the challenges and changes it will bring.
Flowers for you, Op. I hope tomorrow is a better day.

Didiplanthis · 05/03/2018 17:23

She wants her feeling to be valued and acknowledged. She wants the struggle she and her child face to be heard. She wants to know she is not the only one finding the life she didnt choose but has found herself living with no escape very very hard.

HangtheblessedDJ · 05/03/2018 17:23

etherized I accept that the difficulties are misery inducing for you.

Butchmanda · 05/03/2018 17:29

I feel exactly the same. It's a hard world out there and ASD just makes it harder for the whole family.

I do take heart from autistic adults saying that they are ok with themselves - it gives me hope.

Sometimes I think the stress will kill me off before my son reaches that stage.