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?

@FrankensteinIsTheMonster

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

Fair enough I have a good group of friends ,and tbh some of our chat can be beyond the pale sometimes ,but we do all adore our children

@FrankensteinIsTheMonster I don’t think it’s humour at all, more of a precise description of the thought that passed through the poster’s head...Showing how frustrated she was.

Anyway you do you

Anyway you do you

What do you mean by that?

I have experienced both sides: ds2 diagnosed at 2.5yrs, special school, anxious about everything, learning disabled.

Ds1 just about to start his assessment for ASD at 13. Will get a diagnosis, had a nervous breakdown in yr 6, on sertraline since he was 12, socially anxious but happy, funny and breathtakingly clever.

I would love to take Autism away from ds2 but with ds1, it helps him focus on his interests (science and maths) and with our support, he does really well.

Two very different children.

@FrankensteinIsTheMonster

Anyway you do you

What do you mean by that?

I think sometimes you can be driven to distraction and thoughts might go through your head that you would never act ,on my son has severe autism and learning disabilities,his behaviour can be very challenging,I'm human so sometimes I might think or say things that I would never actually carry out right now he's asleep beside me with his legs on mine and it makes things all worth while

Sure x2boys — still, I believe it's possible to cross the line of human decency when it comes to talking in that level of detail about murdering your child for being disabled, on a public forum. But I don't understand how that explains the "you do you" instruction?

I had the special talent /gift thing last week. I often say he can break glass with his high pitched screaming. They tend to prefer to hear how good he is with numbers though, like rain man 🙄

Ds3 can't stand the constant noise this year has been really really hard, they act like they hate each other after being out of school on and off and stuck in the house together for so long

Attention, I have relatives who definitely aren't lovely (very abusive childhood). So I say he's lovely it's because he's one of my favourite people. And I said he "has it" as he specifically says he describes himself as a person with autism rather than an autistic person if you see what I mean? He goes through absolute hell. Didn't mean to offend. ( I can private pm you if you like - don't want to say more on here)

It's hard, isn't it? Part of me wishes DS was not autistic because the neurotypical world is pretty hostile to autistic mindsets. But then..l love him as he is. I don't want to change him. I do sometimes want to change the world so it was kinder to him though.

@FrankensteinIsTheMonster sorry typed too fast I thought I left that on preview! Did not mean to actually post it

Meant to say that whoever said that probably didn’t mean it and would never actually do it . You may be interpreting it a bit too literally (which people tend to do if autistic) but you’re within your rights to do so...

Thanks for the elaboration Lotus.

I do realise it's unlikely that someone who's genuinely intending to murder her child is posing about it on MN I also understand that when under great stress, thoughts go through your head that you would never carry out. However, given that we live in a society where the murder of disabled children by their parents is frequently treated as understandable, forgiveable, etc., and disabled people's lives are often treated as less valuable, I think it's important to avoid normalising the idea of fantasising about murdering your disabled child. It's deeply troubling that the poster has these thoughts and feels no compunction about broadcasting them, and a sign that our society is failing disabled people and their carers.

Never mind I'd take it away, my son would take it away from himself if he could!

*posting

Your friend sounds like she completely lacks empathy!

If a friend texted me to say they were having a shit time or were struggling with something, even if it was something that they have always struggled with and are going to carry on struggling with, I'd sympathise and ask if there was anything I could do to help. Or at the very least, if I really couldnt see it from their point of view, a generic 'oh no poor you, that sounds shit hope you're ok' etc.

If anyone is finding something hard (unless it's a completely non valid thing like oh it's so hard being so rich, I just cant decide where to spend my money first and its stressing me out) but if it's a genuinely hard thing they are doing...telling them to look on the bright side is just going to make them want to punch you in the face

My ds has autism, and it's certainly not a bloody gift in this family.

I'm autistic and it feels the furthest thing from a gift today. I've spent most of it crying or lying on my bed unable to do anything.

But it's really indistinguishable from the rest of me so it's not really helpful I suppose to try to separate that bit of me that makes life difficult and blame it. I wish life wasn't so hard.

Not sure if this helps you but I get it.

I once liked something on Instagram from the joy of autism and now cant bring myself to unlike even though it gives me the rage. I have to keep it to be incredulous of how narrow minded it is without realising. It just leaves out a huge section of autistic people who dont want to celebrate their autistic traits deeming them to need enlightenment. My DS is 20 now and I would like to say it gets easier. It does and it doesn't really there are things he does now I never thought he would do and predictably stuff he will never be able to do. I hope he is happy in his own way ( no recognition of it and showing it). I do my best and that's all any of us can do.

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.

So who can speak for those who are most profoundly impacted by their autism then? They can’t speak or write for themselves in many cases, so the only views of autism that can be expressed are those of people who are the most able to express themselves? That is a problem.

I’ve also had the “your children understand more than you think they do” from autistic people who’ve never so much as laid eyes on my children and have absolutely not a shred of knowledge of what my children do or don’t understand.

It’s highly likely I’m ND myself (unsure if ASD or ADHD). DT1’s recent tendency towards hyperlexia has made me realise that I was hyperlexic myself, on top of a huge list of other good and bad things that have made a lot more sense to me since my twins were diagnosed.

I’m not pursuing a diagnosis - it would be pointless for me. But if I did pursue one and was diagnosed, that would then apparently give me the right to speak for autistic children and adults who will never have the opportunity to achieve the things I have because the impact on me is so minor in comparison? It’s nonsensical. Whether I am autistic or not (and I would never say I am without a diagnosis as that’s just wrong), I’ve never had the slightest clue what being profoundly autistic is like as an individual. The only way I can understand it to some extent is as a parent.

@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 haven't read the whole thread (sorry, am hungover!) but I just wanted to say thank you for posting this as it's how I feel about my ds a lot of the time. Especially the bit about how his perception is so different to reality :( as he gets older it's bringing different challenges and I really worry about his mental health.

So know that you're definitely not alone (although am guessing 7 pages of this has helped you see that)

I’m not pursuing a diagnosis - it would be pointless for me. But if I did pursue one and was diagnosed, that would then apparently give me the right to speak for autistic children and adults who will never have the opportunity to achieve the things I have because the impact on me is so minor in comparison?

I don’t think anybody said that.

As one of them there literal-minded spergy types, I've had to learn quite explicitly that not every thought that goes through my head is appropriate for a public airing. That includes any thoughts I might have about killing someone, especially if that person is from a vulnerable minority made more vulnerable by general societal acceptance of their being murdered occasionally.

I have two girls with autism. I love them fiercely. Would I change them having autism? Yes I would. The anxiety for them is unbearable, one cannot talk or communicate, both have huge sensory issues. These affect their day to day life and cause them pain and difficulties and challenges. It hurts them and it hurts me that I can’t take that pain away from them. For us autism is not a gift.

We're fast finding our feet in the world of autism here. Living meltdowns and overstressed services and stuff I never dreamed I'd ever navigate. Hats off to everyone living it - its breathtakingly hard. I'm finding the autism view points bewildering and eye opening. Even the word 'diagnosis' is disputed in some view points, and some advocate for self-declaration with valid reasoning.
I don't want to argue about that but I do know is that, people with autism should get to define whether it is a gift for themselves, people who care for those with autism should get a voice too. it's facile and glib to declare it a gift. But typical of meme culture 'its ok not to be ok' trite bollocks, but then absolutely no awareness that mental health services in this country are on their knees.
I don't care whether it's a gift - I care about where the funding for respite care is, the action to provide adequate schools, the reduction in years long waiting lists for diagnosis, the people suffering on the front line.
I do really value the perspectives of high profile auties like Harry Thompson. He's funny, raises awareness and gives me hope - but no person with autism obviously speaks for everyone.
Anyway - rambling. But piss off anyone either not autistic or living with an autistic person that says it's a gift.

@RickiTarr

I’m not pursuing a diagnosis - it would be pointless for me. But if I did pursue one and was diagnosed, that would then apparently give me the right to speak for autistic children and adults who will never have the opportunity to achieve the things I have because the impact on me is so minor in comparison?

I don’t think anybody said that.

But plenty of people do say that. I’ve seen it countless times.

It's as much of a gift as being able to read people's thoughts but unable to control it or seeing ghosts is.

For the "lucky" few they can focus and make something out of it. Something better. Something amazing. The vast majority though, would drown in the noise , be unable to live a full, happy life,be severely limited in what they can do and how etc.

Btw I'm not trying to say that autism is made up or anything like that. Just that what other people see as an extraordinary,admirable and so on(and let's face it,their experiences are very limited and sanitised) gift, comes at a cost. A cost of blood,sweat,tears and fears. From the person with autism and their carers.