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.

@pottedshrimps nobody has implied you have no right to live! That's quite a bit of word twisting you are doing there.

You cannot criticize people for venting about how hard the impact of having an autistic child can be.

I will not apologize for wanting my dd to have a life without struggles, that doesn't make me disablist, it makes me a parent who hates that her dd struggles EVERY.SINGLE.DAY. She gets no rest from it. She can't even sleep unmedicated, so unless she had something to help her, she is struggling all day and most of the night too.

We are currently in the process of considering meds for her relentless anxiety.

We are also considering meds for stopping her periods, because she REALLY isn't coping with them.

She's 11, this is NOT the life I wanted for her. 3 meds before she is a teen just to help her cope with being a CHILD, are you really thinking that this is a good life for a CHILD of 11???

Because I don't. And I will not apologies for that.

She often says she wishes she doesn't have autism, does that make her disablist too?

Are your kids aware that you consider them to be a nuisance? No one has described their child as such, my dd has no idea that I wish she didn't have autism. She will never know.

so hating an innate part of yourself and sucking up to the NTs doesn't seem entirely healthy. How patronizing.

@Branleuse I don't want a "perfect" child, I want a child who at 11 doesn't need three meds in order to cope with being 11. Sorry that you can't understand that.

express their desire that autistic people didn't exist and were replaced by different, better and above all, normal children Not ONE person has said that. Stop twisting words.

jeez, noone, not even me said that it isnt difficult. The whole neurodiversity movement isnt about pretending everything is great and noone has any difficulties. It sounds really difficult for your daaughter, and in turn you.
What IS true, is that autism is not something you can wish away or remove, without getting rid of the whole person because it is who they are. The whole movement is about helping people find ways to improve their lives, make parts of the disability easier to live with for the autistic person and hopefully their carers, but also to reframe societies understanding and expectations of what is "a good life", and understanding that some of the things we are expecting of autistic children and pushing onto them are not only harmful to the autistic person themselves, but its also a fruitless task, because at best, you can teach them to mask, which can lead to a lot more other issues later on with mental health etc.
I also wish my children could do all the things they want to do. A lot of stuff they wont though, and I will continue to talk to them about the positives, and how they actually ARE OK, and it is what it is. We will work with what we've got.
There are things your 11 year old may struggle with now that she wont always struggle with. I hope that for you both.
I have come to terms with the fact that my eldest may well never be independent, but im still amazed how much progress he has made since he was little and it felt like everything was impossible. We've had so much heartbreak along the way as you let go of the picture in your head of how it was "supposed" to be, and now we've all just embraced a lot of it for how it is. Maybe its easier for us in some ways because we are all on the spectrum in this family so we just get on with it, but its really fucking hard when I need to retreat and hide and I cant and my children are sensory seeking and loud and I actually cant cope. Ive had actual breakdowns. There are loads of negative sides to being autistic in a world full of OTHER PEOPLE and their stupid structured society that doesnt work very well for us.
I talk to my kids all the time about their strengths, because theyre well aware of their failures from the rest of society.

Im really sorry if you honestly feel like you arent allowed to say negative stuff about autism or youll somehow get in trouble? Its completely not my experience, as I think people are in general, overwhelmingly MORE than happy to not only say negative things, but openly discriminate and bully about it. Its not even a case of just not having needs met.
The world would imo be a much better place if autistic people were supported better to become contributing members of society. So many autistic adults would work if workplaces were understanding and friendly to them. Autistic people are set up to bloody fail from the start.

Im sorry that your daughter needs so much medication, but Im also glad that there is medication that helps. I think the one to stop periods could be a gamechanger for her. One less thing to worry about, and god, arent periods a sensory nightmare at times. My 11 year old thankfully takes them in her stride, but I do know other autistic girls who find them really hard to cope with, poor things. So young too.

I am in process of my nearly 3dd being diagnosed with autism. I do not believe the autism is part of her personality. Yes she does certain behaviours because of it. But it's not her personality. I have been diagnosed with dyslexia in last 5 years. I would wish that away in a heartbeat. I do things because of the dyslexia. Get words muddled up forget what people have said when they talk to me , spell awful . I don't see any of that as my personallity. I did before I found out I was dyslexic. I would wish my dd autism away in second. She is non verbal and not in our world most of the time, takes hours to go to sleep and Wakes for hours in night. I'm not going to apologise for being gutted this is our life. Everyone has the right to be disappointed or sad about their situation, noone has right to judge. I love my little girl and I will always do everything she needs.

No one wants their child to have anything wrong with them or any condition that makes like harder then it has to be.

I would be gutted if my child was autistic not because of the autism but because of the difficulties they may face.

@differentnameforthis

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.

I'm assuming you stopped reading the thread as soon as my post annoyed you, so you thought you'd explain exactly how wrong I am without reading any of the subsequent posts that actually discussed this in more detail?

Fair enough. And yes, you can vent all you like about how tough it is. I'm pretty sure that some of us posting along the lines of "can we please think about the terms we're using as they're pretty distressing from our point of view" isn't affecting your right to free speech in the slightest, it's just expressing a different perspective.

I'm sorry if you feel offended by what I've said but I don't understand why a person's pain is more important than another person's pain and entitles them to say anything they like, without getting upset at another person exercising their right to reply.

I didn't wish to upset you and I don't believe that having ASD entitles me to do that. If that's how it came across, then that's my fault and I apologise for causing you more distress.

Actually, thinking about it, I need to leave this thread for my own mental wellbeing now. Apologies for replying and then leaving the thread.

After spending much of yesterday in a state of agitation following some comments, combined with the inability to reach common ground on this thread, I've realised that this is a dead end and I don't want to contribute to a toxic situation any further.

Unfortunately, the replies today have just left me feeling flat and hopeless. What's the point of trying to bring anything positive or constructive to a discussion when we're constantly bombarded with people who read the first few posts then fly to the end to angrily reiterate the exact same points, causing the discussion to degenerate? All progress stops because everyone wants to yell or vent at someone else for their bad luck, so we're all stuck in a crappy groundhog day, going over the same arguments and redrawing the same lines that separate the two groups.

The thing I find most disheartening is the tribes that've formed on this thread. Reading it, you'd think we're two completely disparate groups of people but we've all got important things in common and, given the chance, there's no reason why we can't support each other and help each other out.

ASD isn't any more homogenous than the NT spectrum but we might have experiences and suggestions that could perhaps be useful for ASD parents. Much like I'd love to hear feedback or suggestions from ASD parents about navigating the NT world. Instead, we all fall back to the same worn out positions and none of us move forward or feel better for restating our pain.

I'm sorry for my part in this and I don't wish to contribute to any further divisions between a group of people that care for ASD children and another group of people who have ASD (many of whom also care for ASD children) because it just doesn't make any sense.

I'd like to thank everyone who engaged openly with me yesterday. I've learnt a lot and it's given me much to think about. My best wishes to everyone here, I hope you all manage to find a way to thrive and move forward to a more positive future.

finitemonkeys

@Branleuse Thank you.

I think what is clear from this thread is that this debate will go on for a long time, with people embracing/celebrating autism, and people wanting to rid it from themselves, and or their child.

It's much a spectrum in itself...one size doesn't fit all, and we all have our own opinion and struggles.

I can only speak for myself here, but wishing away dd's struggles isn't wishing away everyone with autism. I just want her life to be easier.

for everyone.

@finitemonkeys

Just de lurking to say that your responses on this thread have been measured and articulate. Thank you for sharing your viewpoint and doing your best to start to bridge the gap without silencing anyone.

to all too from me. And apologies to finitemonkeys for being curt with you.

I've not read all the further comments since I commented on page 1 I think it was but after another atrocious week for my supposed high functioning son, I'm beginning to worry about his state of mind. We have safeguarding issues because they refuse him an EHCP, along with his teen hormones his anxiety is somewhere near the space station and he really can't cope at all. He's being bullied but refuses to 'grass them up'.

So today I'd definitely remove his autism if I could. I know how hard he's going to struggle in life and he's not as good as masking it as I am. Days like today I wish he'd been born NT, sorry if others don't like my negative thinking and language but there you go...

Not sure I understand why there's so much negativity on this thread.
If I had a magic wand and could rid my son of his autism, I would. In a heartbeat. Purely to make life easier for him. As i would with any medical condition a child suffers with that has a huge impact on their lives.
I don't think thats selfish. Its hypothetical, because in this real world we play the hand we are dealt. That doesn't mean we can't have days where we wish for a better hand

i think its just quite hard for people to realise that everyone wishes they were different and a disappointment and a burden, especially your own parents. Its a hard lesson to learn that everyone thinks youre fundamentally flawed.

Its really empowering when people try and see your positives.

and in that is the fundamental between a lot of NT parents of autistic kids and a autistic parents. Not always so, but i do think its a big thing.

I also think you see it with other disabilities too. My deaf brother doesnt feel disabled around his wife and kids who sign and when he has adaptations. He does elsewhere. I think hed be annoyed if he had to work to improve his hearing constantly when its never gonna happen.

it was why my son flourished more in a SEN school where everyone was really positive about ability not disability, whereas my other son who is in mainstream and has left one because it was shit and made no adaptations, to another where he still feels like a fucking failure.
In the right environment and with the right adaptations, you know it can actually be ok.

My autistic child is 20. Life has been awful for the whole family for years. We have no social life at all. Have been out twice as a couple in 17 years. His life is not easy and autism has had a huge negative effect on our family. Our younger children have lives very different to their friends.

We love him, of course we do, but it’s been a difficult time. Just popping to the shops is not possible. I absolutely detest people who say autism isn’t that bad because for some it really is that bad. Absolutely every aspect of our lives revolves around our son. And that’s not ever going to end.

People are talking about their own experience,s not autistic people as whole , it is not for others to say one person,s feeling,s about their own e experiences of autism is wrong ,because your experience is yours alone but this thread is going round and around in circles ,and not really helpfull anymore imo.

@BenjiB exactly everything you have wrote is true of my family and our life with our severely autistic son. I have dreams of him waking up normal.wish this wasn't my life or his.

theyre not though, theyre saying autism is shit, people who are positive about autism can go fuck themselves. People with HFA are taking over. Autism ruins lives, breaks up families.

If people were saying this about other children or parenting, there would be outcry, it would raise a lot of eyebrows. When its autistic kids, its normal to hear this about yourself.

Whats the answer. Its very likely to be improving services and support for people. Increasing societies acceptance of differences, normalise asking for adaptations without a huge fuss. Increase respite care and stop making EHCPs and diagnoses so hard to access. Increase SEN schools and colleges. Increase SEN facilities and courses in mainstreams.

A lot of the issues people have with autism (not all) are to do with how much of a nightmare it is to access help, support and the constant battle with other peoples shitty uninformed opinions on it.
Autism is here to stay so rather than hating it, we need to concentrate on how to help people better.

Well.we will.have to agree to disagree I can only talk about my child and how it's affected my family I can't speak for others and others can't speak for me or my child .

Bran
i think its just quite hard for people to realise that everyone wishes they were different and a DISAPPOINTMENT and a BURDEN, especially your own parents. Its a hard lesson to learn that everyone thinks youre fundamentally FLAWED.

I've highlighted the words I don't agree with and sound incredibly emotive and provocative. I do not see my child as a disappointment or a burden. I never have thought or said that. I am disappointed in the situation that I am not experiencing certain things that parents with verbal children experience, like saying mummy. And I also don't think she is flawed! I see the autism as something that is in our lives and causes my daughter difficulties.

You can be in favour of improving schools, making society more accessible, improving the general understanding of autism etc and still wish to acknowledge how autism can sometimes have negative effects for the autistic person and/or their family.

TBH I'm tired of the constant positive attitude that people seem to feel the need to demand from others. If they genuinely feel positive about their autism or disability then that is wonderful and there's certainly a place for that, but other people need to be allowed to express negative thoughts too and acknowledge their difficulties.

I'm currently volunteering for an agency that deals with a lot of people with disabilities and a lot of parents of children. One of the most important things that we allow them to do is discuss how hard things are and how much they're struggling. I can tell how much it means to them just to be allowed to talk and have someone listen without being told that they have the wrong attitude, that they should look on the bright side, that there are people worse off etc. We do what we can to help them get extra money/services to improve their lives, but allowing them to talk freely is so important too.

I'm sure that my family wish I didn't have my mental health issues(as do I) but if they express that I wouldn't take it as a personal criticism. It doesn't mean that they love me any less or that they wish they could have a different child. Just because some people are unable to understand the difference doesn't make their feelings wrong or mean that I'm unwanted.

Well said x2boys and chicken.

I also think expecting parents to constantly be positive about the challenges they face is very dangerous for their mental health. I have recently been diagnosed with “p”tsd because of everything that has happened with Ds. It’s not really post because it’s still life every day.

I love him dearly and wokld and do do anything for him but if I could take away the amount he suffers, and the extra stress it places on both of us too right I would.