To think that actually, autism can be a bad thing and it's okay to say that?

[User172818289]

My DS (5) was diagnosed a year or so ago. He is almost completely non-verbal, not potty trained and not looking like he will be for a while if at all, has to go to a special school and doesn't really interact with anyone much. We have basically accepted that he is not going to be able to have a 'normal' life, although we do things to make his life enjoyable and easier!

New colleague at work, started at the beginning of September has a son about the same age as DS. She asked what school he went to, so I explained that he has autism and goes to a SS. She goes 'Well autism isn't a bad thing' and goes on to talk for about 20 minutes about her autistic brother, who has 2 degrees, a girlfriend, a reasonably normal sounding life I would say.

Of course we love DS with all our hearts but I can't help sometimes wishing he didn't have autism. I tried to say something along those lines to colleague, I said something about yeah but he can be challenging sometimes and she said that I shouldn't define him by a label and there are no limits on what he can do.

AIBU to think actually autism can be a bad thing? I am not trying to offend anyone on here, please feel free to take this down if anyone is offended.

You are missing my point completely.
If you didnt chose only the bits that work for you, you would have seen that I actually have TRIED to live in that ASD world. So saying I cant conceive even trying is disingenous. You seem to have assumed I am somehow against people with ASD when its far from the case (how could I when I have a chid and a husband on the spectrum??)

Ive also said I didnt manage to do it. I have no issue with that because my conclusion from that is that t is just as hard for NT people to 'get' the ASD world than it is for ASD people to 'get' the NT world.

But more importantly, it's not because I am raising issues associated with your pov that I 'refuse to countenance discussing it'. It just means that I think its not as simple as that.
Some NT are very vulnerable groups too. Do you expect them to accomodate and go into the ASD world regardless of their own impairements for example?

There are many groups, not just ASD people who need and shoud get the support you are describing.
Its SALT and CAMHS when they are young. Its MH support, suport for vulnerable people etc... The situation is dire in the UK as a whole for ANYONE in that sort of position. Its not just an autism issue.

We live it and the only option is to carry on, get whatever positives you can from the autism and get the most enjoyment you can out of daily life.
YY and this is true for anyone who has a long term/chronic tye of impairement. whether its autism or MH or a more physical issue.

And that's another part of the bigger problem - that there's no adequate support system for ASD parents either.

Anecdotal, but from what I've seen, the level of care and support provisions offered seems to depend entirely on luck, rather than by need.

I understand it's good to seek support from people in similar situations but thinking about our own internal attitudes and how that expresses in language is rather important when you're dealing with people who require a certain amount of semantic precision to understand what you're saying.

When many of us tell our children off, we're careful to separate the behaviour from the child. We focus on saying the behaviour is bad because we don't want the child to believe they're intrinsically bad.

The problem for people with ASD - or anyone with a spectrum adjacent disorder - is that it's impossible to separate our personality out from our disorder.

When someone you love tells you they wish you didn't have this disorder, they don't realise that this carries the weight of "you aren't good enough, stop being you."

And when many of us have had to deal with sighs or comments like "can't you pretend to be normal just once" throughout our lives from teachers, parents, friends and even partners in later life, it really doesn't take much to convince us that we're fatally flawed and trigger the mental issues responsible for our truncated lifespan.

My DD has ADHD and Autism. I know how hard, isolating and utterly exhausting it can be. I know the guilt that comes with reaching the end of your strength and wanting to hide from them, or snapping and shouting and feeling terrible.

But from the other side, there's the guilt of not just being able to fit into a normal world without friction. Of your family having to deal with your confusion and distress at the world. Or the incredible embarrassment you feel when you've had a meltdown and everyone around you looks tired and sad but is so incredibly nice about it that the shame and lack of self-control makes you want to crawl in a hole and die.

It's tough on everyone and policing every word isn't constructive. But when everyone's hurting, isn't it a good idea to find common ground and look for the words that describe the exhaustion and despair, without crushing the possibility that things can improve

Anecdotal, but from what I've seen, the level of care and support provisions offered seems to depend entirely on luck, rather than by need

Even worse it comes down to who has the most fight in them too often. And if a young person has a parent who isn’t in a position to fight the system they are going to struggle to get anything. And that is in no way a dig at the parents because fighting has made me ill from the constant battles to get the right support.

Parenting a child with asd can be isolating and I doubt I’m unusual in rarely discussing my son in any way with strangers or friends - especially if they may judge or criticise jinx
So being able to discuss the fears, the difficulties and the problems on line is important.

Spot on.

My own personal experience, too, is that co-morbidities with autism are very often overlooked or undiagnosed, it's 'Oh, autism, go away'.

Finitemonkeys

I appreciate all you say and I agree with much of it
I would however take issue with the many assumptions in there - which ironically arise from your assumptions about my sons life experience . He hasn’t dealt with sighs or disappointment or expressions of regret about his asd.
I would not express those things and even if I did he would not register or understand them.
There is literally nothing about my discussing his issues in line that can hurt or upset him. If I discuss my fears about what happens to him when I die that is valuable to me and him. Conversations on line were part of how I have found support and the beginnings of a way forward.

I am careful how I talk in line but my obligation ultimately is to my son myself and my family. I can’t explain and see help for his vulnerability if I have to wrap it in a meaningless positivity in case someone with a totally different manifestation of asd feels upset by that - however much I would wish to be supportive and encouraging. Without wishing to be rude - whyvis that my responsibility?
My ability to peruse forcefully the support and resources my son needs is directly affected by my ability to name his limitations
Kids like my son lose out when people providing support can point at parents like me and pretend that we are being negative and our lack of ambition is holding him back.

I can’t tell you how often I have sat in meeting where people have tried to offer him a level of resources and support that is below what he needs

So many typos
Sorry

I don't think the answer is anyone conforming to anyone else's world. It's about compromise. Yes, it's mostly the nt world that needs to start compromising, the asd world already does regarding nts. But to work for everyone, the asd world would still need to compromise, not just for nts, but those that don't fit into either category.

In my relationships/ crossed paths with people with Aspergers/ Hfa, there's rarely a natural middle ground between their asd and my adhd. Either they complement each other, or clash entirely. Not on a whole person level, but individual issues.

Eg something as basic as having the radio on at work. I need that and several other controllable distractions to concentrate enough to do certain tasks. Colleague can't cope with the radio unless he has zero other stresses at that moment. I struggle with his hesitation/ worries about whether to do x, he struggles with my impulsive need to do x yesterday.

On the other hand, his need for order is the same as mine, just for different reasons. Ditto my hyper focus and his singular pursuit of a task. And sometimes we balance the extremes/ negative aspects of the other.

But when we clash, it's worse than with an nt person. Because we essentially get on well, and have more understanding of each other than the average nt person, it's short lived and mostly we're very good at compromising or finding solutions. But it takes a lot of effort from us both.

But I do find it frustrating that some people seem to ignore the fact the world doesn't split between asd and nt people that are all in a position to compromise. And although I realise it was no doubt directly because of their autism, rather than being selfish or narrow minded, I have encountered adults that seem to think I should put my adhd completely to one side to accommodate their asd.

Admittedly I work in an industry that means Aspergers is more common than in the average job, and by no means are they the majority. But if we're going to have an ideal world where conforming to nt is no longer the norm, those with asd, as well as those of us that have different conditions are still going to have to conform with each other.

I wasn't making those assumptions about you - that was my guilt about how I failed my daughter at times.

But yes, you're absolutely right, you have no responsibility for mine or anyone else's feelings, other than basic civility and not wanting to make anyone's lives worse.

I just thought it'd be better to find some common ground when we're discussing this rather than competing about whether it's worst to have autism or care for someone with autism. It's all hard, so a common language that doesn't make parents feel guilty and doesn't make people with ASD feel worthless seemed a more positive way to go.

My son has autism
Hes 4 non verbal not toilet trained. Absolutely no safety awareness.
He also has muscular dystrophy on top
It is exhausting

@Lofari I'm sorry. It's so so tough and lonely. Unfortunately nobody in this thread wants to hear from anyone that isn't bickering though.

My son is lying next to me pulling my hair while I type this,all the while laughing and screaming incessantly. He has been awake for an hour and will be up until tomorrow night.its just another typical night of absolutely no sleep for me and vigilance to keep him safe.my son is 5,severely autistic, non verbal with severe learning disabilities. I'm not ashamed to say it hes totally ruined my life,my other kids childhood,my health my mental wellbeing, my relationships with family and friends. I know it's his autism.i haven't known him any other way.as a baby he cried without breath days and days on end.i wish I'd never had him,wish his Autism didn't define my life.yes I'm making it about me because I care for him 24/7 literally. It's so effing hard I couldn't begin to describe the emotions and physical energy it takes to look after him.i hate that this is my life with no hope of it getting easier.

I actually also have an ADHD (combined type) diagnosis, I just didnt see it as relevant to a post about autism so didnt mention it when I was talking about my autism.

There has been a massive rise in diagnosis of ADHD in adults in the last 5 years. The reason you don't see loads of people going on about getting diagnosed as adults is because they keep it to themselves (there's quite a few busy private Facebook groups etc) because there's a real stigma and misunderstanding of ADHD in adults, particularly in women. Its seen as a little boys problem and not real. People with ADHD are often seen as lazy or childish when they actually have serious problems with executive functioning.

Funnily enough I don't see swathes of people talking about their STI status on mumsnet either but I'm fairly sure that a good percentage of mnetters will have an STI... Weird that, people keeping their private, possibly stigmatising personal information shock/horror private

If I could remove my children’s autism I would, I know that’s not the thing we are supposed to say and they are high functioning but that autism means a great deal of distress for them, it means my son had very few friends and will probably never live completely independently, it means my daughter suffers horrific anxiety that stops her doing things other girls her age do.
Yes there are plus points too, but I think overall it causes them more harm than good. If that makes me a shit mother/person, then so be it.

It's a spectrum and some autistic people are less affected and some more so.

Just as losing a lower leg is a disability and so is being paralysed from the neck down. Not comparable and one is much worse than the other.

Idiotic to invalidate your experience.

WhatAMum01
Really sorry that you are struggling, and admiration for your honesty.
If you can try and get advice. There is many charities who may be able to help, possibly only a little but it might give you support.

It’s not about an actual ASD world, there is no such thing. It’s about the assumptions behind our understandings which are all NT. It’s about Othering which seems to be integral to the definition of ASD (Arendt, de Beauvoir on Othering Jews and women respectively, type of thing).

Othering is tricky when you're constantly told that autism means a person sees the world differently, needs allowances and you can't expect the same behaviour. It's a lot for the average person to get their head round.

You're entitled to your opinion, and in severe cases I might agree with you. However I have autism and wouldn't get rid of it even if I could as then I would lie easily like most normal people.

I don't lie like others do about stupid things like meeting for coffee when I have no intention to, or telling someone they have a great idea when it's clearly rubbish, or going along with new flawed processes at work without pointing out the issues. If everyone stopped even white lies I feel the world would be a better place.

I like being me.

I haven't read the whole thread but I don't think you are being unreasonable to feel how you do at all.

I'm currently doing PhD research in autism policy and specifically looking at how autistic people influence policy, so I've done a lot of reading on different viewpoints on autism, including the autism as strength argument.

I'm not far enough along to have official findings yet but it certainly seems to me that there is still much to be done to improve support and services for those who aren't able to advocate for themselves and for those who do experience either their own or their child's autism as a struggle.

Personally I can sort of see both sides, although kind of a reverse situation to yours. My ex-husband has Asperger's. Living with him was a real struggle and while it wasn't all the autism, it certainly exacerbated things. On the other hand my sister is, while not autistic, globally developmentally delayed and non-verbal - think toddler in a 30 yo body. I don't think I'd want to take her condition away. She is who she is and she's happy. But then she has 24/7 care and I don't provide it for her so I might feel differently if I was living with it daily, which is why I wouldn't ever say someone else's feelings on this kind of thing weren't valid.

SnuggyBuggy I don’t quite get your point...everyone is different and everyone sees the world differently, none of that justifies Othering which is the exclusion and marginalization of people because they are different. If anything your post is a glaring instance of Othering.

I think the autistic spectrum is very complex and I do feel I get very different and mixed messages about it. I thought I was a good friend to my autistic friends but now it seems more complex than I ever thought. Even the way my friends talked about themselves would come under criticism today.

I guess it comes down to how should we both respect the differences autism brings and the difficulties of being autistic living in an NT world without crossing over into othering.

@DuckWillow It's not unheard of for autism in girls to be mis-dx as ADHD.

@differentnameforthis I’ve been fortunate to get both diagnoses but a friend had to get PALS involved because she was told she couldn’t be autistic as she could “make eye contact” 🙄

As she is now 44 it’s safe to assume she’s learned to mask really well.

@finitemonkeys

That you have to end with an attack on what you deem as the "NTs" is actually not any better than what you have perceived to have been said here.

I love my dd fiercely. I have NEVER told her to her face that I would wish away her autism, and even though she has said it herself A LOT, I would never give her the message that she was anything but perfect who she is. Everything I do is centered on helping her.

We are allowed to vent. Which is what this thread started at, and I am not going to apologize for wishing my dd didn't have to struggle the way she does.

@DuckWillow That is exactly what a school psych said about dd...she makes eye contact, so can't be autistic. Less than a few months later she was dx autistic. Some people have no idea.