To feel jealous of people with neurotypical children?

[littlesm]

I'm not usually a bitter or jealous person but as my children are growing up I look at families with just neurotypical children (families I know well not just assuming) and can't help but feel a pang of jealousy. Is it just me?

@mutationseagull @Doodlebug71 thanks, your explanations make total sense.

My son has no concept that he is Autistic, has Autism etc, his main interests are water and spinning to music and blu tac, exactly what does he have in common with very articulate, high functioning people who think they can speak for him "as autism is autism"?

They would argue that he has learning difficulties in addition to autism and that it is the learning difficulties rather than autism causing the problem.

I disagree. I’m high functioning autistic as is one of my dc. My dc has challenges but they are different from a dc who is profoundly disabled. I don’t ever pretend to speak for you or your ds. Please don’t think all high functioning asd people are like that. The very vocal minority are purporting to speak for me and my dc too, which they don’t.

I’d prefer not to find social situations so confusing, not to be constantly misinterpreted by the majority of people, not to experience crippling anxiety (which is a direct result of my asd, not a separate issue). I would prefer my dc not to feel suicidal or to have been unable to cope in school due to the noise levels and inability to understand basic things like playing on a team, and to have the ability to remember basic self care tasks without help. I hope he will be independent but high functioning or not, it’s touch and go. And I refuse to apologise for wishing those challenges away for him.

I’m also a gay person, a mother and a tall person.
But those are part of my identity in a way that asd isn’t. It doesn’t have to be just because some other autistic people say it does.

@LizzieAnt. No one is shouting anyone down. I explained the difference between terms. If you don't like my posts, you are free to ignore them.

@WhenZoomWasJustAnIceLolly

My son has no concept that he is Autistic, has Autism etc, his main interests are water and spinning to music and blu tac, exactly what does he have in common with very articulate, high functioning people who think they can speak for him "as autism is autism"?

They would argue that he has learning difficulties in addition to autism and that it is the learning difficulties rather than autism causing the problem.

I disagree. I’m high functioning autistic as is one of my dc. My dc has challenges but they are different from a dc who is profoundly disabled. I don’t ever pretend to speak for you or your ds. Please don’t think all high functioning asd people are like that. The very vocal minority are purporting to speak for me and my dc too, which they don’t.

I’d prefer not to find social situations so confusing, not to be constantly misinterpreted by the majority of people, not to experience crippling anxiety (which is a direct result of my asd, not a separate issue). I would prefer my dc not to feel suicidal or to have been unable to cope in school due to the noise levels and inability to understand basic things like playing on a team, and to have the ability to remember basic self care tasks without help. I hope he will be independent but high functioning or not, it’s touch and go. And I refuse to apologise for wishing those challenges away for him.

Thankyou i dont
think all high functioning people are like, that just as you say the very vocal minority I was once told on here that it should only be autistic people, who should have a say about, things in the community specifically for people with autism and as a parent of a child with autism what would i know? But if i cant advocate for my own child, who speaks for, he cant speak for himself?

It's all very interesting when people start sharing their views. I've always used 'has autism' regarding DD2 but at the same time, I do think it's impossible to separate out the autism from her. I recently did her DLA renewal and I was really worried that I wasn't communicating the extent of the impact her autism has on her daily life. It all sounded so wishy washy - DD2 'gets anxious' conjures a picture of someone gently chewing their lip as they bravely go about their task. The reality is that we have so many things we don't do because she won't cope and even when we need to go somewhere, we have to abandon the trip when she's overwhelmed.

Having said that, if someone referred to DD1 as 'SN' I'd be really angry. She isn't 'special needs', she has special needs.

So what makes it ok to say that someone 'is autistic' but not 'is moderate learning difficulties'? I don't know.

Equally, I agree that it is really unhelpful that ASD has been given a blanket diagnostic term. DD1 is waiting for dx, ADOS done but waiting for 3Di. I think she will be diagnosed, but even with her moderate/severe learning difficulties, she will function at a level where we can tell her that she has been diagnosed with ASD and she will grasp 'there is a reason why you struggle.' She wouldn't understand about the intricacies, but she would grasp that the doctor has told her there is a reason that she finds things hard. That is a world away from a child who doesn't even know they find things hard and just does exactly what their impulses tell them to, with no concept that their actions impact on other people.

[quote Doodlebug71]@LizzieAnt. No one is shouting anyone down. I explained the difference between terms. If you don't like my posts, you are free to ignore them.[/quote]
The thing is, though, I sometimes prefer to say that I disagree with a point, rather than ignoring and shutting up and saying nothing.
I agree with a lot of what you say btw, but not with the idea that there is only one correct way of referring to an autistic person, which is what I think you were claiming. Just because a certain terminology is your choice, and perhaps even the choice of the majority, doesn't mean it's everyone's preference. I think that's worth pointing out.

[quote NotPersephone]@Doodlebug71 I wasn’t suggesting that “has autism” should trump “autistic” or vice versa. I’m not autistic and couldn’t give a shiny shite either way. I have hugely bigger fish to fry for DS.

The point is that a tiny, gobby subset of autistic people - specifically the articulate, “high-functioning” part of the spectrum - have taken it upon themselves to self-declare as spokespeople for those across the entire spectrum and want to tell everyone else how they should/shouldn’t describe themselves because “language matters”. Why not use their obviously considerable free time to improve things for all autistic people, rather than just gobbing off at random towards people who inadvertently use the wrong words? There is no NHS support, fuck-all on offer at the average LA, CAMHS is beyond fucking useless with ND, parents are running themselves ragged trying to meet needs - but apparently all that matters is that we don’t try to qualify anybody’s autism. It’s utter batshit. Why not advocate for something worthwhile?

There is a huge irony (that they don’t see) which is that a huge percentage of those on the spectrum are unable to articulate their own views, their needs or anything else. My DS in “only” autistic - his IQ is higher than average, his other diagnoses are dyspraxia, ARFID and SPD, and yet he is completely “low functioning” in terms of social skills, development and interaction. He will never have the luxury of giving a toss whether he is described as autistic, with autism, or anything else. They don’t speak for him - I do.[/quote]
100%agree my son is non verbal, so he cant speak for himself, i have to speak for him.

I agree notpersephone

I am always happy to listen to views of others especially those who are autistic but when certain groups will argue things like “autism isn’t a disability” or argue over semantics rather than look at the intention of what is being said it makes it hard.

Personally I don’t think trying to stifle conversation simply because someone says “is autistic” rather than “has autism” or whatever is deemed acceptable helps anyone.

I can relate OP. My DS is undiagnosed but almost certainly ASD. He's at the age where his peers are going off and becoming independent and he isn't. I feel that pang.

@Sirzy

I agree notpersephone

I am always happy to listen to views of others especially those who are autistic but when certain groups will argue things like “autism isn’t a disability” or argue over semantics rather than look at the intention of what is being said it makes it hard.

Personally I don’t think trying to stifle conversation simply because someone says “is autistic” rather than “has autism” or whatever is deemed acceptable helps anyone.

Agree, and it doesnt help anyone to minimise the affects autism has on some people To meet the criteria for an autism diagnosis, there has to be a Triad of impairment, s even if an individual doesnt feel disabled by their autism its a recognised disabillity.

@Lougle

It's all very interesting when people start sharing their views. I've always used 'has autism' regarding DD2 but at the same time, I do think it's impossible to separate out the autism from her. I recently did her DLA renewal and I was really worried that I wasn't communicating the extent of the impact her autism has on her daily life. It all sounded so wishy washy - DD2 'gets anxious' conjures a picture of someone gently chewing their lip as they bravely go about their task. The reality is that we have so many things we don't do because she won't cope and even when we need to go somewhere, we have to abandon the trip when she's overwhelmed.

Having said that, if someone referred to DD1 as 'SN' I'd be really angry. She isn't 'special needs', she has special needs.

So what makes it ok to say that someone 'is autistic' but not 'is moderate learning difficulties'? I don't know.

Equally, I agree that it is really unhelpful that ASD has been given a blanket diagnostic term. DD1 is waiting for dx, ADOS done but waiting for 3Di. I think she will be diagnosed, but even with her moderate/severe learning difficulties, she will function at a level where we can tell her that she has been diagnosed with ASD and she will grasp 'there is a reason why you struggle.' She wouldn't understand about the intricacies, but she would grasp that the doctor has told her there is a reason that she finds things hard. That is a world away from a child who doesn't even know they find things hard and just does exactly what their impulses tell them to, with no concept that their actions impact on other people.

The person is autistic. They have learning diffculties. That's the English language for you. I suspect that most people here didn't study the English language, they just use it, without having any idea of what they're doing, or why they're doing it.

@Sirzy

I agree notpersephone

I am always happy to listen to views of others especially those who are autistic but when certain groups will argue things like “autism isn’t a disability” or argue over semantics rather than look at the intention of what is being said it makes it hard.

Personally I don’t think trying to stifle conversation simply because someone says “is autistic” rather than “has autism” or whatever is deemed acceptable helps anyone.

FFS. No one is trying to stifle anyone else.

This shit is why I prefer to help people write the reports, but refuse to take over the writing. I'll write a draft, based on their diary, but it's up to them to express that in their own words. This is why.

OP has the right to feel jealousy/sadness/anger. Of course.

Autistic people have the right to shape/campaign/insist about language that refers to them.

Think about the Spastic Society changing to Scope which was driven by someone with CP. should she not have been able to decide for everyone because some/many people with CP are nonverbal?

“Lang, now 74, says that people ceased to think of those with cerebral palsy as individuals. "We might have a brain injury in common but we are all different and don't want to be put in a box labelled 'spastic'."

www.google.co.uk/amp/s/www.bbc.co.uk/news/blogs-ouch-26788607.amp

No one is trying to stifle anyone else.

I think some of what you're saying is open to misinterpretation so Doodlebug. You did seem to be saying upthread that there was only one correct way to describe an autistic person, and to condemn the use of 'has autism' instead.

I suspect that most people here didn't study the English language, they just use it, without having any idea of what they're doing, or why they're doing it.

Again here, I'm curious - are you including yourself in that cohort? Or are you saying that you're getting it right (because you have thought about the language you're using) while many others here are getting it wrong?
Maybe I'm just misunderstanding what you're saying, I'm not sure.

Autistic people have the right to shape/campaign/insist about language that refers to them.

Yes, of course OnTheHillNotOverIt, but they don't have the right to speak for all autistic people without consulting either them or, in many cases, their families who represent them.

Think about the Spastic Society changing to Scope which was driven by someone with CP

Making a decision to change a name that, regrettably, had become a pejorative and a term of 'playground abuse' is quite a different situation to what's being discussed upthread imo.

[quote NotPersephone]@Doodlebug71 I wasn’t suggesting that “has autism” should trump “autistic” or vice versa. I’m not autistic and couldn’t give a shiny shite either way. I have hugely bigger fish to fry for DS.

The point is that a tiny, gobby subset of autistic people - specifically the articulate, “high-functioning” part of the spectrum - have taken it upon themselves to self-declare as spokespeople for those across the entire spectrum and want to tell everyone else how they should/shouldn’t describe themselves because “language matters”. Why not use their obviously considerable free time to improve things for all autistic people, rather than just gobbing off at random towards people who inadvertently use the wrong words? There is no NHS support, fuck-all on offer at the average LA, CAMHS is beyond fucking useless with ND, parents are running themselves ragged trying to meet needs - but apparently all that matters is that we don’t try to qualify anybody’s autism. It’s utter batshit. Why not advocate for something worthwhile?

There is a huge irony (that they don’t see) which is that a huge percentage of those on the spectrum are unable to articulate their own views, their needs or anything else. My DS in “only” autistic - his IQ is higher than average, his other diagnoses are dyspraxia, ARFID and SPD, and yet he is completely “low functioning” in terms of social skills, development and interaction. He will never have the luxury of giving a toss whether he is described as autistic, with autism, or anything else. They don’t speak for him - I do.[/quote]
I agree that the language thing is a non-issue (or should be), but I wish people would stop using 'high-functioning' as some kind of insult. It's pretty alienating, and there are plenty of autistic people who are considered to be high-functioning who are not part of this minority group.