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?

How would you acknowledge the different levels of how people are affected?

This is what I’m interested in. My son is non verbal, still in nappies and functions at the level of a 2/3 year old. I’ll carry on saying he has it severely and that others have it mildly.

@anothernewtop
I didn’t say mild.
I said more mildly.
Again, how would you phrase or allow for the differences in impact?

[quote Coronawireless]@RickiTarr
How would you acknowledge the different levels of how people are affected?[/quote]
You’ve deliberately used “mildly” twice in ten minutes. Anybody with half a foot in autism world understands why that’s wrong. Go and do some reading.

I know a lot about autism.
You haven’t answered my perfectly valid question.

@IhateBoswell

How would you acknowledge the different levels of how people are affected?

This is what I’m interested in. My son is non verbal, still in nappies and functions at the level of a 2/3 year old. I’ll carry on saying he has it severely and that others have it mildly.

Personally @IhateBoswell (damn you for reminding me of the Boswell thread ), I wish the DSMV had gone in the opposite direction and not only retained Aspergers as an available new dx but codified it separately, not least for the practical reasons that these kinds of discussions throw up.

As it is, we have all the struggles of navigating a neurotypical-normative society, no services, plus a bunch of irritating twits telling us we have autism “mildly”.

I know a lot about autism.

Oh do go away. You sound like Donald Trump.

If you don’t know that HFA/Aspergers isn’t autism “mildly”, you know next to nothing. Go and build a wall.

As it is, we have all the struggles of navigating a neurotypical-normative society, no services, plus a bunch of irritating twits telling us we have autism “mildly”.

Whoa, I’m not a twit 😂
I didn’t mean to offend you, genuinely. I don’t for a minute think your autism doesn’t affect you, there just doesn’t seem to be much consideration(?) in the autistic community for those who are... see, I can’t think of a word other than “severely” affected?

@anothernewtop

Many severely affected autistic people would not be capable of posting on a forum to explain how they feel. It’s important that they don’t get spoken for by more mildly affected people.

It's even more important that people stop using the term 'mild' when referring to autism.

Well said @anothernewtop

Well, this thread was started to acknowledge that autism is not mild or a gift for many people. So if you’re agreeing with that then you’re on board with the majority here.

[quote Coronawireless]@anothernewtop
I didn’t say mild.
I said more mildly.
Again, how would you phrase or allow for the differences in impact?[/quote]
Mild/more mildly. Same thing.

The pain in my finger is 'mild'

The pain is affecting me 'more mildly' thanzzz

Whoa, I’m not a twit 😂
I didn’t mean to offend you, genuinely. I don’t for a minute think your autism doesn’t affect you, there just doesn’t seem to be much consideration(?) in the autistic community for those who are... see, I can’t think of a word other than “severely” affected?

Sorry I hadn’t actually noticed that you had also said the incredibly inaccurate and irritating thing. 😏

It does get difficult and complicated, and it’s got more difficult and complicated since the DSMV effectively formalised the position that it’s all one condition. I’m not sure I agree that it is. It’s related, obviously, but you essentially have two large tents in terms of presentation and not much overlap.

That’s why I think two entirely different diagnoses would be better. Way back when it used to be “Kanner” autism and Aspergers. I can’t remember without googling if anybody actually objected to “Kanner” as a term or if it just withered as the whole “spectrum condition” rhetoric took over.

The spectrum thing was useful in getting so called “higher functioning” individuals diagnosed instead of leaving them to founder. (My generation were mostly diagnosed as adults, my DC’s generation were diagnosed as children, my dad’s generation never were diagnosed.)

Maybe its done its job, now though. People will feel differently about their conditions, but generally they need to have positive self-image, as much as possible, despite their differences. My autistic DC are verbal and in some ways high-functioning, so I need them to feel positive, despite the boulders in the road.

@RickiTarr
And I’m interested in your view about retaining Aspergers and making it a separate diagnosis. I’ve wondered that myself.

@RickiTarr
Cross post

My autistic DC are verbal and in some ways high-functioning, so I need them to feel positive, despite the boulders in the road.

I can understand that

I agree with you about the two different diagnoses.

@RickiTarr
Also you mention the word high-functioning which I’ve heard that some people don’t like either.
The constant jumping on people for using the wrong terminology when they are suffering or desperate is hard to see.

I suppose “high functioning” and “low functioning” are the best we have ? Although I don’t really like them and can imagine some parents like them even less?

Nope, never heard of autism being considered a positive

You see personally I hate the high functioning label as that does give the impression of people not being impacted when really that couldn’t be further from the truth.

My view is autism is too wide a spectrum to even attempt to classify it into smaller boxes at all, it’s way too complex to try to fit it into boxes!

Yeah the terminology around it all isn’t great.
Some say autistic, some say have autism... it can be a minefield.

X post.

Yes I can understand that.

It’s really, really hard to watch a whole thread of “autism is awful”, “autism is definitely not a gift”, “I’d be devastated if my children had autism” too, from position. My dual positions as aspie and parent of aspies, really.

There really isn’t any amount of money you could give me to be someone else, and I would have to be someone else to be NT. From my perspective, it’s society that is excluding.

It really wasn’t a good day for us when our distinct label was taken away.

You see personally I hate the high functioning label as that does give the impression of people not being impacted when really that couldn’t be further from the truth.

Yes, it’s inadequate and inaccurate. Not many other choices on the horizon though.

@RickiTarr

X post.

Yes I can understand that.

It’s really, really hard to watch a whole thread of “autism is awful”, “autism is definitely not a gift”, “I’d be devastated if my children had autism” too, from position. My dual positions as aspie and parent of aspies, really.

There really isn’t any amount of money you could give me to be someone else, and I would have to be someone else to be NT. From my perspective, it’s society that is excluding.

It really wasn’t a good day for us when our distinct label was taken away.

I can understand that. Again, some don’t agree but it would be my view.

Well there’s a bit more agreement, anyway.

Got to go and join my Zoom meeting now.

@Coronawireless

Many severely affected autistic people would not be capable of posting on a forum to explain how they feel. It’s important that they don’t get spoken for by more mildly affected people.

@Coronawireless - exactly this. If my adult son could log on to a computer, read and understand posts and respond, all our lives would be a lot easier!

It’s really, really hard to watch a whole thread of “autism is awful”, “autism is definitely not a gift”, “I’d be devastated if my children had autism” too, from position. My dual positions as aspie and parent of aspies, really.

Yeah that must be awful (no sarcasm).
It sounds trite but I love my son and wouldn’t swap him for a minute. It’s just heartbreaking and terrifying knowing he will never ever live independently, let alone speak or write anything. It’s for that reason I would take his autism away, not to make life easier for me.