To think no, autism is not a ‘gift’?

[RowRowYaStoat]

Does anyone else feel like this?
I’m feeling like the worlds worst parent right now. 12 year has been crying and kicking off since 7am this morning. After an awful few months , my patience is wearing thin.

Everything that goes wrong is my fault.
I honestly feels like he hates me (he doesn’t) but the way he talks to me, the way he shuts me out but expects me to fix everything.

The rigid thinking, total lack of compromise. The shouting, screaming.

The resistance to any change or expectation that he should do something himself.

The effect on siblings, the resentment they often feel. The fact my marriage is pushed to breaking point because the stress is immense.

And the lack of empathy from family and friends: “autism is a gift… embrace it !”.

I love my DS dearly. I’ll do anything to make him happy , but it’s just never enough. I always feel like he’s not happy and I worry how his perception of things is so different to the real situation.

And I lost my patience today.

Please tell me I’m not the only one to find this damned hard? Or am I just rubbish at this?

. I have no idea if my boys will ever be able to go on the Internet and engage in a discussion about autism, so those who can’t aren’t really represented in any discussion (especially when parents are told to shut up).
This. I’ve been told I’m pretty much disgusting on this very site for saying I would take my son’s autism away, by someone with autism. He will never be able to sit at a laptop and type anything, or live independently. It’s upsetting, but I’m developing that rhino skin 🤷🏼‍♀️

No, autism is not a gift and I can think of many other presents I’d give my 30 year old severely autistic son instead.

LadyOfLittleLeisure That's an interesting article.

I do think part of the issue is how medically, we put a diagnosis on a collection of symptoms and then when it's well known, the loudest voices tend to adjust it as they see fit. I've certain read from many that there may be benefits, though also risks, for more specific diagnosis labels rather than folding everything into the spectrum or, even broader, into neurodivergence. It's difficult.

I mean this kindly but you say “us” which is quite generic and your difficulties aren’t going to be the same as other people with autism and their difficulties.

That's true of every disability, and in general, solidarity within disabled communities involves using us/we when discussing groups we are part of or collective recognition with those who share our conditions or condition groups and I/me when discussing our own experiences, which Scautish did.

It's fairly common for those who've grown up with a disability to have the feelings Scautish describes - research has shown that many even without conditions that cut short lifespan grow up with a feeling that we will or should die young. I've had it. I grew up knowing I was hard work and what a burden I was. I think parents should have the capacity to vent among themselves, but I think input like Scautish gives shows that many are already aware of that so the platitudes about it being a gift, while well-intended, rarely have the benefit that originated from that which was to make disabled children feel better and lower suicidal ideation rates.

My DS is autistic and his ASD has a whole gang of mates keeping it company. I hate them all and would do anything for him not to have them. He struggles so much with everyday life (he's 21 now) it just makes me weep.
People still ask "what's his special talent" or say he doesn't look autistic and it kills me every time.
Worst thing though is he knows he is not "normal" and so desperately wants to be.

YADNBU. My DS is 22 and autistic (his terminology choice). He should be at uni or in a job now and enjoying life, maybe moving in with friends, travelling, falling in love. Instead he is stuck at home with me with almost no social life or employment prospects. He is unemployable other than possibly on some sort of scheme as he can't cope with people. His anxiety is through the roof and he struggles with phobias, hand washing, noises etc. Anyone who says it's a gift can foxtrot Oscar as far as I'm concerned.

@Scautish

It is a disability

You shouldn’t get a diagnosis unless it impairs your life in a daily basis.

And sorry I said us. It’s just the thread was about autism so I took it to be generic. I am not trying to mimimise your experiences as parents. We are hard work.

I don't know if you're hard work or not. I'm not your parent.

@RickiTarr - it's about not making sweeping generalisations. I am only ever talking about my own experience of parenting an autistic child. Just like my child is only one autistic person, I am also only one NT person and the dynamic between us impacts everything.

I object to anyone telling other parents they can't talk about their truth though because it might offend other posters.

This. I’ve been told I’m pretty much disgusting on this very site for saying I would take my son’s autism away, by someone with autism. He will never be able to sit at a laptop and type anything, or live independently. It’s upsetting, but I’m developing that rhino skin

You’re not disgusting. In fact I’ve heard so much nonsense from some of those on the spectrum who think they speak for everyone on the spectrum that I just ignore them now or tell them to bugger off.

Looking to the future I hope for prenatal testing and I’d think nothing bad about anyone who took advantage of it as I would. I couldn’t for the life of me being another child into the world with the level of difficulties and health problems my son has.

DS2 is also autistic (though less severe than DS1). He has epic meltdowns and the neighbours must think I'm murdering him. It's soul destroying. I remember one nativity play seeing all the other kids on stage smiling and singing. DS refused to put his costume on and sat in the front row of the audience rocking for the duration. Some gift.

I suppose in some ways those children like my son who are severely impacted by their autism are less affected by it themselves ,my son has no idea he has autism he is completely oblivious to it and his destructiveness,for the most part he's s happy child ,it's the rest of us that struggle ,and family life tends to be lead by him ,it's very hard for his brother ,and i worry constantly about the future .

Its neither a gift for my dd or I. It's extremely challenging to live with. But it is down to the individual. It's not a one size fits all.

Well said @SinkGirl and @PickAChew

@RickiTarr - it's about not making sweeping generalisations.

Yes exactly. You can’t generalise either way.

Parents of autists can speak about parenting autists but can’t speak for autists, and vice versa (those of us wearing both hats being in an even more complex position,). Low functioning being very different from high functioning. Co morbidities another complication.

I agreed with the OP but as the thread wore on the tone became quite as bad, or worse, as any of those “autism is my superpower” glib aphorisms.

There are definitely plenty of people about who wouldn’t be neurotypical of given the chance.

@x2boys

Indeed ,if you have met one person with autism, you have met one person with autism.

Well said.

Autism really isn't a walk in the park. I understand why you felt annoyed OP.
I have a DS with autism who is at a special school and DD who is awaiting diagnosis and struggling in mainstream. My ex husband also has autism and was one of the main reasons our marriage did not work. His stubbornness, rigidity, obsessions, refusal to compromise, routines and complete denial of any issue (it was me being difficult) wore me down.
Now that DS has a diagnosis, he has also been diagnosed, although he still lacks insight into his behaviour and tries to portray me as an angry and controlling person. So unfortunately as well as looking after my two autistic children, I also have to deal with my autistic ex fairly regularly. Sometimes I feel like I'm banging my head against a wall.

I also have a DD who is neuro typical. She struggles with the behaviour of her siblings and her Dad. I feel for her as she has to accommodate them so much.

@AlfonsoTheTerrible touche.

@RowRowYaStoat

Autism is a gift was said by a friend when I texted saying I was having a tough day. She breezily replied ‘embrace it’ and then changed the subject to how she’s just been having a fab time with her kids

You do need to respond to her, if you want to stay friends.

Tell her she upset you. ‘I’ve just told you I’m having a bad day. Telling me about your fab day with dc is not helping and is actually upsetting me.l

@RickiTarr was that directed at my posts? I don’t think I’ve said anything awful about autism?

No not directed at you.

It's not a gift. I have 3 dc who have autism. Dc1 is intellectually incredible but socially clueless. Dc2 has significant mental health problems and dc5 struggles with everything.

I'm an adult-diagnosed autistic, and while it was perfectly obvious to everyone throughout my childhood that there was something very wrong with me, I don't have all the same kind of difficulties autistic people with greater support needs and their families struggle with (though I did have more of those kinds of difficulties when I was younger than I do now). I'm totally on board with people having a place to discuss those things, and understand that even though I feel a kinship and familiarity with many autistic people with high support needs, I can never totally understand what it's like to be them or their families.

But I was shocked that MNHQ were totally fine with this post:

My son is 33 with severe LDs and autism. We went out for a meal last night, celebrating meeting inside with his older brother again after 17 months of shielding. It was like breaking bread with a fucking angry Goblin. I wanted to drown him in the Lobster tank but there were too many witnesses.

Apparently it's okay to muse about murdering your own child and elaborate on it to the point of talking about witnesses — it's just how the poster expresses her frustration.

Maybe it's my black-and-white thinking coming into play here, but to me that's not okay, and quite worrying. A brief "ugh, I could've killed him", sure. A description of your precise murder method fantasies and what might stop you getting away with it? Mmm, that's taking it into "slightly chilling" territory, notwithstanding the dark-humour tone.

It's not okay to murder your autistic kids, and since that's a thing that people do actually do sometimes, it does actually need saying IMO. If you're fantasising about it and expressing that in public, that's a problem.

YANBU whoever said it is fucking rude. This is part of the #bepositive idiocy.
Also thanks to the media everyone thinks that every autistic person has some sort of superpower.
News flash NT’s can be just as good at stuff but without all of this difficulty.

I have ADHD (inherited from my dad). DP is autistic (inherited from his dad). Our parents didn’t have it easy and if your child is screaming, cannot live Independently it must be a million times harder. I hope and pray with all my heart that our children aren’t like us. Hell I don’t even want to have any because I have no idea what strange combination of brains will result...

@FrankensteinIsTheMonster

I'm an adult-diagnosed autistic, and while it was perfectly obvious to everyone throughout my childhood that there was something very wrong with me, I don't have all the same kind of difficulties autistic people with greater support needs and their families struggle with (though I did have more of those kinds of difficulties when I was younger than I do now). I'm totally on board with people having a place to discuss those things, and understand that even though I feel a kinship and familiarity with many autistic people with high support needs, I can never totally understand what it's like to be them or their families.

But I was shocked that MNHQ were totally fine with this post:

My son is 33 with severe LDs and autism. We went out for a meal last night, celebrating meeting inside with his older brother again after 17 months of shielding. It was like breaking bread with a fucking angry Goblin. I wanted to drown him in the Lobster tank but there were too many witnesses.

Apparently it's okay to muse about murdering your own child and elaborate on it to the point of talking about witnesses — it's just how the poster expresses her frustration.

Maybe it's my black-and-white thinking coming into play here, but to me that's not okay, and quite worrying. A brief "ugh, I could've killed him", sure. A description of your precise murder method fantasies and what might stop you getting away with it? Mmm, that's taking it into "slightly chilling" territory, notwithstanding the dark-humour tone.

It's not okay to murder your autistic kids, and since that's a thing that people do actually do sometimes, it does actually need saying IMO. If you're fantasising about it and expressing that in public, that's a problem.

I think it's probably tongue in cheek about how difficult it is to care for a now adult child with severe autism and learning disabilities,I'm sure the poster doesn't want to harm her son ,or maybe I just have a very dark sense of humour years of working in acute mental health and raising a child with severe autism and learning disabilities?

Yeah, I'm used to dark humour, but I think that post crossed a line TBH.

I'm autistic (my choice of definition). It's not a gift, it's very isolating. I'm often overwhelmed. Every day I feel that I'm barely holding together my work life and family.