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?

@BananaBoatFeet

I didn't drown my 33 yr old, 6'7" 20 stone son

I can’t drown mine either cos the deep end of our pool only comes up to his chin.

I have almost drowned myself though when having to run away one day and I jumped in the pool forgetting he could stand up in it. 🤣

Our sons sound very similar build wise.

Another 'Oh Fuck' moment.

I find it's more from people with NT children or the self professed super "inclusive" ones. Ofc, not inclusive enough to actually listen to the parents that are struggling and pouring their hearts out.
The same narrative from people with no experience of dementia.

@osbertthesyrianhamster I would be gutted my child had a condition that would hinder his life emotionally and socially yes I absolutely would.

Unfortunately you don't get a choice.

I have an inclusive suggestion! Why don't we build BIGGER lobster tanks and put ALL the people in them - angry goblins, well meaning types, embracers, gift appreciators - then sell the TV rights and use the money for actual mental health provision?

I yam what I yam but I'd rather not be that yam.

This thread has really helped me, thank you to everyone who had posted.

My DS1 has recently been diagnosed with ADHD and I have no one to talk to (except my mum) about just how fucking hard it is. Most people Ive told have no clue what it is or know someone whose DC had it and is now top of his class in uni...so why am I struggling?!

It's the daily battles and arguments and screaming fits that are wearing me down and impacting his younger brother too. I dread when he's had a bad day at school (most days) as the whole evening is taken up with his meltdowns then I'll fall into bed exhausted only to get up again the next morning and for it to all start again.

He is 9 and Ive said for years now that I don't know how he will cope when he's an adult. His anxiety is off the wall.

@bitheby Thank you so much for that! I had no idea such a thing existed

[quote MrsSnitchnose]@bitheby Thank you so much for that! I had no idea such a thing existed[/quote]

No worries. I hope it gives you both some encouragement.

@AnUnoriginalUsername

I'm autistic. It is not a gift. But it's not a curse either. And embracing it is absolutely the best way. Its a different way of thinking, and lots of the difficulty is trying to make an autistic brain pretend to be a neurotypical brain. It will always fail and it will be anxious and chaotic.

I think of it this way for my DC, it's just them, neither curse nor blessing. But I know although they need a lot of support and one may never be able to live independently, that we're lucky.

in response to OP post: Autism can be profoundly disabling and it invalidates people's experience trying to paint it all as a gift. There's a reason divorce rates are so high amongst couples that have children with SEN, because it takes so much out of you. Life is harder for my DC, it's harder for us all, it's exhausting and constant. I love my DC to bits, exactly as they are, but it's still really really tough.

@NEVERQUIT3331

I think people do not understand the severity of it.

The old saying some people use "we are all a little autistic" is frankly degrading to hear. The effect it has on the individual can be detrimental e.g. not finding a job, not being able to lead a life that others can etc.. It is not taken as seriously in 2021 and that is still sad to see.

I'm thinking lobster tanks looking pretty good here. Hm, where to find one big enough....

First things first, you are NOT rubbish at this. Parenting an autistic child is extremely challenging.

DD1 is autistic and it is NOT a gift for her. I've never met another parent of an autistic child that thinks it's a gift.

Aside from the fact that the constant messages to "celebrate" their "difference" erodes what little support is available for autistic children/adults and their families, it means so little. Of course I celebrate my child's achievements, which are often not typical for her age. But how is refusing to acknowledge her disability going to help her? We can all be as kind and accommodating as we like, and there are adjustments that can be made to help, but sometimes what DD1 thinks will happen and what will actually happen are different. She will have a meltdown. Transport running late, particular food out of stock, rain? She will have to be able to cope with that to function independently in the world, and none of it can be changed. So she, and we, should be able to acknowledge that this is disabling for her.

As much as the shallow platitudes, I detest the faux empathy..

Our social worker (who so far has achieved nothing but add another source of anxiety into our lives) keeps head tilting, telling me how much she loves this job and telling me she doesn't know how I do it. IT IS BECAUSE I HAVE NO FUCKING CHOICE!!!

I find it's more from people with NT children or the self professed super "inclusive" ones. Ofc, not inclusive enough to actually listen to the parents that are struggling and pouring their hearts out.

I find too that inclusion/equality/understanding/empathy suddenly vanishes as soon as NT people think it might inconvenience them and their super-important NT activities.

Or if they think someone is getting something they're not. I've seen threads on here before where some bright spark has posted such shite as "you shouldn't be able to get carers allowance for your own child" or have held to the belief that disabled people get free taxis so shy do they need the accessible space on a bus and so on.

I would be suprised if anyone really thinks that autism is a gift. No matter how high functioning you are you will struggle to fit in with society. Life won't be easy. I think people say this to try and make others feel better. I can't believe they really think it. It must be so hard OP

Thank you to all who have shared their experiences on this thread, many of which I share. I often feel very alone in my experience of parenting two autistic children. One of them has been kicked out of his special school because his behaviour is so challenging. That is not a fucking "gift". He is academically gifted, I don't know whether that is because of or despite his autism, but it's no fucking use if he can't function in the world. If I could I would swap his autism for average academic ability and an end to the crippling anxiety, depression and behavioural problems.

Such an interesting thread. My son is only 3 and only recently diagnosed. He has had a good few "meltdowns", mainly in busy places before we really figured out what triggers him. I've had the range of responses, from a lovely man who said (while my son was laying on floor banging head on ground in Aldi entrance) ”i fucking hate Aldi too, I get it kid”, or the group of granny's who stopped their car while he was having a meltdown on the sidewalk in a busy tourist town to tell me how beautiful he was and they'd ask to take him home except for he obviously already had a good mum, which made me cry, to the woman who said (same Aldi incident) that I shouldn't bring my kids to Aldi again if they can't behave, or all of the clicking tongues and shaking heads of not-so-subtle disapproval of what they assume is my poor parenting. He's only 3.
It's really useful to hear honest accounts of people's experiences where their kids are older than mine.

Anyone who says that "autism is a gift" within earshot of me will instantly be told to fuck off with that trite bullshit.
I have 2 adult children with different Autism diagnoses, they are very different in most ways but very alike in others.
Dc1, will be able to live and work independently without too many issues. Those issues mainly involve poor mental health mainly because of how dc2 has struggled and his challenging behaviors.
With dc2
It wasn't a gift at 1, when he was bouncing his head off the floor, walls, doors, stairs, radiators, chairs etc, as well as barely sleeping or eating and drinking.
It wasn't a gift at 5, when he was hitting and kicking everything and everyone in frustration and desperation. Still barely sleeping or eating.
It wasn't a gift at 9, when he wished he wasn't alive. Still hitting and kicking and barely sleeping or eating.
It wasn't a gift at 10, when he was permanently excluded from mainstream school, lack of knowledge, training, funding and understanding had a huge part to play in that.
It wasn't a gift at 15, when other disabilities were thrown in to the mix. Still barely sleeping with challenging behaviors
It wasn't a gift at 17, when he returned to mainstream education.
It is not a gift at 20, still in mainstream education, still struggling, still self harming, still barely sleeping, still unable to adequately put thoughts and feelings into words or onto paper, still unable to relate to others, still unable to appreciate what others do for him, still unable to reliably get himself to/from college. We don't yet know what he can cope with after this year. Mainstream college and covid restrictions have had severely negative impact on his SEMH...

From my perspective Autism almost destroyed us as a family 10 years ago, it succeeded in splitting apart my family 3 years ago because I couldn't hold down a job (which I needed for my own mental health), support aging parents through illness and injury and also supporting my very aged grandparent all whilst trying to do everything for my own family with no support and no respite, I obviously wasn't the kind of wife my husband wanted, now it is just me and my adult children muddling through life as best we can and just one parent left to support.

So no OP, you are most definitely not being unreasonable.

@Mylittlepony374

Such an interesting thread. My son is only 3 and only recently diagnosed. He has had a good few "meltdowns", mainly in busy places before we really figured out what triggers him. I've had the range of responses, from a lovely man who said (while my son was laying on floor banging head on ground in Aldi entrance) ”i fucking hate Aldi too, I get it kid”, or the group of granny's who stopped their car while he was having a meltdown on the sidewalk in a busy tourist town to tell me how beautiful he was and they'd ask to take him home except for he obviously already had a good mum, which made me cry, to the woman who said (same Aldi incident) that I shouldn't bring my kids to Aldi again if they can't behave, or all of the clicking tongues and shaking heads of not-so-subtle disapproval of what they assume is my poor parenting. He's only 3. It's really useful to hear honest accounts of people's experiences where their kids are older than mine.

I wish I could tell you it gets easier but a three year old having a meltdown is much more socially acceptable than an 8 or 12 year old. My advice is to get all and any help you can lay your hands on as soon as you can and develop a very thick skin.

@Heidi1982 Thanks. I am working on getting him all the help I can lay my hands on. And my skins already rhino thick- currently I give no fucks what people think but I can imagine that's going to be hard to maintain over time. That's why these threads are useful, learning from people who have been/are there.

I remember my son when about 12 shouting 'You're showing yourself up Mum' when I tried to stop him kicking off in a shop.
Luckily I was too busy to notice the reactions of other shoppers.

@Mylittlepony374
One positive I can think of is that as they get older you're better able to anticipate and plan for meltdowns, and will have got to know your child's triggers - up to a point.
You will learn to avoid places and situations that are particularly difficult. You may build up a bank of resources to help as time goes by: physical items (toys, bubble wrap etc.) distraction techniques, and coping strategies for yourself.

Sometimes strangers will surprise you with their understanding or kindness as you have found; other times the opposite. You do have to develop a pretty thick skin as a PP said!

I think people do not understand the severity of it.

I agree. I'm don't have autism but I do have ADHD and the two are often lumped in with each other under the "neurodiverse" banner.

It's interesting to me that one of the biggest ADHD communities on the internet is totally against what they call "the neurodiverse movement". When I actually got thinking about it and read their reasoning I found myself really agreeing with the logic.

From a quick google, taken from a Forbes article:

Having worked in the Neurodiversity field for the last twenty years, I am proud to say that I have played a role in the shift away from a deficits based understanding of neurominority conditions and helped to increase awareness of the numerous strengths that come from thinking differently to the majority of the population.

What strengths? And why are we so keen for people completely unconnected to this to have awareness of the strengths?

It's like focusing, for years, on how a wheelchair user is at eye level with children and how it's such an advantage to any wheelchair user who chooses to work with children... and then looking around bewildered at how businesses haven't added ramps, at how homes don't have mid-level light switches etc. Because for years the narrative has been "strengths" and never "we struggle with this and need adjustments".

Autistic people? Oh they're geniuses! They make the best software engineers. ADHD? The Duracell bunnies of the world. Super creative (once they stop being disruptive little shits in school). That's the extent of the knowledge your average joe is likely to have.

How does focusing on the fact I'm apparently "super creative" and can "think outside the box" help me in work when I'm literally falling asleep during a meeting because I'm chronically under-stimulated and not allowed to walk around?

I do believe people don't understand the severity of anything that falls under the "neurodiverse" banner... but I think part of the blame lies at the neurodiverse banner's door.

I feel like we should be free to talk about how we like this quirk, or how this certain thing has been a blessing in disguise etc... but it should be in exactly the same way as all disabled people are able to do that. "Difference not deficit" to me, is ableism dressed up in slightly less obvious language. It's distancing itself from "disability" as if it's somehow an admission of weakness. As if there is something wrong with having a disability.

It's not a blessing or a curse. It just is.

Copied from the community I reference above, but I think it's very relevant to autism too and any condition which falls under the banner:

Ultimately what we object to is the framing of ADHD as identity. While everyone experiences ADHD differently, we encourage people to see their identity as more than just the disorder that they struggle with throughout their lives. We wish to celebrate who we are and the small victories we have each day, not be made to feel that we must celebrate having ADHD itself. Just as no one should ever have to feel ashamed of having ADHD, neither should we be compelled to take pride in something that has caused us hardship and suffering.

We do not encourage giving our disorder the credit for the things we achieve. Our achievements are in spite of the challenges we face, not because of them.

@Heidi1982... good point. When my son was at school he was “sweet/quirky/unusual”. Now, at nearly 21 he got reported to the police for standing on Morrisons car park, counting cars.

It’s the “gift” that keeps on fucking giving!

@baaaaal exactly!
If anything NT’s have every single talent an ND person has without the accompanying difficulties.
Dont really need sympathy but not fake positivity either. It is what it is. Find solutions to problems but don’t tell people how they should feel about it