To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

Bishop wrt your response to my post on page 15 I totally agree that some of it was responses to Autism not the Autism itself but all the responses would not have occurred if ASD was not present iyswim. Discrimination and victimisation was as a direct result of how the ASD presents in DS. The lies and misinformation stemmed from a lack of knowledge and understanding of ASD in general and the bullying occurred because it apparently was "funny to see him have a meltdown" the lies were more to do with the knowledge that ds would not tell us what was going on ( Compartmentalization).

Our earlier experiences are not unlike many others that have been posted on Mn but I have not seen anything like the more recent stuff that has been happening to us being posted about on any of the forums that I use, even a SEND solicitor was shocked at it and advised me that I shouldn't

Oops posted too soon, solicitor said that I should keep it out of the public domain because it makes us easily identifiable.

Thank you for agreeing that we should not have gone through what we did.

Ds1 hasn't slept for the last two nights, which has resulted in daytime sleeping. Have tried my hardest to keep him awake to help him get back into a sensible routine. Looks like we are in for night number 3, really don't think I can do it. Oh is away all night and DS is currently lying on my bedroom floor banging his head and screaming. I feel shattered, I'm not having daytime sleeps due to needing to look after ds2 so basically I'm up all night with one, snatch an hour of sleep first thing and then up all day with the other. Urgghh

I’ve been dipping in and out of this thread, unable to decide if I should post or not. On the one hand, I do have ASD and I do hate it sometimes... would I want to get rid of it? Yes, but only to remove the bits I don’t like ie the anxiety and social issues. And you can get therapy to overcome that. Some of you clearly have experience of much more severe ASD so I don’t really know if I should properly jump in, as some of you are dealing with much worse.
whatever for those dealing with kids with “low-functioning” (for want of a better phrase) ASD. Must be so frustrating.

Academically my DS is high functioning, some things he is completely fine with and if you had asked me a year or so ago I would have said he was fairly high functioning across the board. Now though his aniexty has completely taken over everything, his is on permanent sensory overload. He has always had meltdowns, always struggled socially but the in-between times were amazing, I had a clever, loving son who was such fun to be around. That's all gone now, now I just have a child who is tired, hungry, scared and so ridiculously anxious all the time. I am a shell of the person I was as a result of trying to care for him and meet his needs. His brother is acting up because he is left out and is terrified of his brothers unpredictable behavouir. My oh, his father doesn't know what to do and is becoming more reclusive (I suspect he may be on the spectrum himself) I literally don't know what to do anymore. We have referrals coming out of our ears but nothing seems to ever change. I hate the fact that high functioning often seems to be seen as able to cope, manage, less autistic. My son is 12, has the iq of a bright 12/13 year old but the emotional/social of a toddler. Sorry for the big rant.

I'm sorry for all the people on here posting about difficulties some of them horrendous that their children or they are suffering and that is, at least in part, due to ASD. I think it is valid to say you hate all the difficulties autism has brought into all of your lives and no-one should be able to take that away/invalidate that experience.

I have 3 children with (hf?) autism (although only 1 (the boy) currently has a diagnosis the 2 girls present very differently but I am positive I would get a diagnosis for at least one of them if I went private).

For two of my children (DS and DT2) it has not really been a problem at all - for DS in fact it seems to be the least problematic. He is a rather interesting little chap, handsome with a lovely smile and a fabulous imagination who is happy and popular (although struggles to communicate with anyone he doesn't know and can only really talk about certain subjects and his language is still quite delayed in lots of ways). He never melts down and although he is sensory seeking seems to manage this well and doesn't get overload. He is learning and doing well enough at school at the moment (mostly behaves himself although is a bit fidgety I guess). I doubt he will ever be a high-flyer but I think all will be fine in the long run (he's quite young so hard to know for sure just have to feel optimistic).

DT2 slow processing but doing about average at school. Social difficulties, says weird stuff (has never really made sense even though she was an early talker), seems to prefer being on her own at times but people like her, I like her, she's sweet and very honest and doesn't try to impress people, very much has her own moral code and seems happy in herself most of the time (no sensory issues that I am aware of although terrible bowel issues which I'm sure are autism related). I know she is going to be fine.

DT1 on the other hand is the brightest, healthiest, most articulate of the 3, on the surface quite sociable not to mention a bit of a stunner who is good at sport, drama, schoolwork, singing. She is a bundle of anxiety, is very violent (although only at home where people can't see), her anxiety stops her from doing well at anything (she would rather not learn something, pull out or deliberately muck up an exam than try and (in her mind inevitably) fail.) She smashes up my house regularly, refuses to do any simple tasks she is asked (PDA type autism I think), has terribly sensory overload, is very cruel to her siblings and threatens suicide regularly. She is also deceitful and manipulative. She also has ADHD I am sure (never stops jumping). I hate the behaviour (not the jumping the violence and the meanness) although I love her (we are working to get it under control with therapy but is difficult as she masks completely at school). I do worry about her all the time and would love to get rid of the anxiety and self-esteem issues as when she is relaxed she is equally as sweet and loving as my other two ASD kids, she just struggles more with being different and I can't seem to communicate with her in the same way.

That's how autism is for us. Its not awful, its just who they are. I wish i'd understood about it earlier with DT1 as then I would have been able to support her rather than think she was just naughty. I appreciate that none of them are experiencing the same things as your children. There is no shit-smearing anymore (stopped when DS was 4) and I think they will all be independent when older although it may take longer.

I am pro-choice (or at least I thought I was) but I am desperately hoping that a pre-natal screening test for autism is never developed as the end result will be the decimation of a significant and important part of our community (no-one is going to read threads like this and think, oh I'm up for a bit of that shit-smearing, violence, social isolation, most people are naturally going to play it safe in the way they do as a result of the screening for Downs).

To the person who mentioned earlier in the thread athat "autistic people would have no problems if we lived in an autistic world"... Are you fucking kidding me? have you ever met autistic people who will not wipe their bums, are scared of eating, will not bathe or brush their teeth or cut their hair, let alone allow any first-aid to their wounds because they profoundly dislike physical touch? How exactly would they survive in an "autistic friendly World"? Who would care for them? I am autistic myself and certainly would not, simply because I am so sensitive to noise than any other autistic person's screams or any other noises would mean I would have the irrepressible urge to run away from them.

Blaming everything on "NT people" is just ridiculous. Autism is not a lovable variation of normal. It is a debilitating condition, even in mild cases. Even though I do like some aspects of my autism, I couldn't put up with another person like myself, I would find me utterly insufferable as I am sure other people, autistic and NT, do find me. I am impatient and demanding, I see things like black or white and struggle seeing other people's points of view. I find it even harder to have a conversation with another autistic person than with an NT person because neither of us wants to let the other person speak.

Autistic people are not any more virtuous because of their (our) autism, you know? And I profoundly feel for parents who have to care for them, because we do make life harder, even the bits who are not NT. I could not care for an autistic child, even one as mild as myself, because I have not been born with the skills to care for a dependent person. And that is mostly due to my kind of autism which make me selfish and impatient, and unable to empathise too well, especially when a person annoys me for a long time. My poor DH has to put up with my meltdowns and unfair verbal attacks on him often. If he was autistic too we would both have ripped each others to shreds by now. No amount of autistic-friendly environment would change that.

Nah thanks OP - I've spent my life being treated like shit for being different (was always immaculately behaved at school but people were so, so cruel to me). If I hadn't endured so much mistreatment as a child/teen i'd still be "high-functioning". So whilst I do not speak for everyone, I'm trying to unlearn two decades of being treated like I am an embarrassment who does not deserve to exist. So yeah, actually, I'm taking pride in being autistic, because for better or worse I wouldn't be me if I weren't. We're one of the few groups against whom it is socially acceptable to promote eugenics and you can bet I'll be fucking fighting that shit.

I get this too. Breaking up with partner - seeing this long scary tunnel of a future bringing up my pretty severe ASD son and already worrying that I just can’t do it.

I feel like I’m Atlas holding up the world, and my back is breaking.

I also second - can anyone ASD but able to function without 24 hour care PLEASE stop talking on behalf of others with ASD who cannot speak, toilet or understand.

Why don’t you volunteer to help out a carer who is looking after someone with ASD instead of using your voice - which many ASD people would kill for - to put down their loving and dedicated Carers.

I hate Autism. Hate the struggles and lifestyle. My son has Autism, ADHD, SPD and learning disabilities. I'd change that in a second

see, i find it problematic when NT parents of autistic children are given opportunities to talk about autism over actual autistic people.

i don't think anyone is putting down carers - quite the opposite actually, we're hearing autism, an essential part of ourselves, attacked. And i have quite enough of a task being my own carer. being an autistic person with speech is both a blessing and a curse as you are expected to function as an NT person would or have some kind of savant ability to compensate for your perceived oddness.

I find the suggestion that those of us with speech are in some kind of privileged position and should volunteer, when we already endure so much, to be astounding, actually.

Thanks for your perspective aurynne. The person that ds1 and ds2 find the most difficult to deal with is their twin (both HFA) to the extent that even at fifteen we would never leave alone together in case one harms the other. This is despite (or maybe because) of them having similar interests and sensory issues. So the solution of having a world full of people with an ASC is not the answer for them.

WorldPeas

I totally agree with most of your post.
Being expected to function as NT because the world expects you to bend to meet it rather and embracing you must be exhausting. And no, it's not the job of anyone with ASD to volunteer to care for someone such as my son. That's a ludicrous suggestion. I am immensely grateful that I'm able to discuss autism with people with autism. It's incredibly helpful to me - selfish , I know

But I'm never going to accept your suggestion that you are better placed to discuss my son than I am. I would always 'talk over' any opinion you may have about his quality of life and his experience of his autism because you know nothing about it.

world
See I find it problematic when NT parents of Autistic children are discussing the children they love, care for and live with are told by adults with Autism that they can't do that because they have arrived now.

You don't know my son. You don't know about the challenges he faces because you are not him. Your Autism is yours, not his.
Unless you are suggesting that all autistic people are the same?

The very fact that you are able to write an articulate post on an internet forum with such confidence is enough to show me you are not facing what my son faces.

I am sick of the way parents and carers are shamed on MN if they dare speak about their own children.

How many times am going to be schooled by a woman with HFA, usually degree educated, late dx, in employment and in a relationship,
telling me that they know ALL about my boy and I should step off and let them deal with it?

Yes I agree. I find talking to autistic people about their autism fascinating. I have also paid for an autistic perspective before (had a few consultations with Donna Williams when ds1 was tiny - they were very helpful, I still refer back to them now) & I am immensely grateful to those with non-verbal autism who have written books as it gives me an insight I couldn’t get otherwise.

But as Pagwatch said I do think I know a lot more about my son than someone who just happens to share the name of his diagnosis - but probably doesn’t share anything about his brand of autism or his life experiences. Donna Williams made a distinction between the life experiences of those who were non-verbal after 5 and those who developed speech before 5 - and I get what she means.

By the way I actively seek out personal experiences of epilepsy - because it can give me clues about how my son experiences it (all we have to go on along with observation as he won’t tolerate an EEG).

So like Pagwatch I wouldn’t talk over anyone - unless they claim to know my son’s lived life experience better than I do (& I have had that happen - more than once).

As the parent of an adult without capacity your position can be precarious anyway. We are in the process of getting deputyship (not straigtforward for health and welfare). Until (if/when) that happens we have no right to make any decisions about ds1. We can contribute but the decision maker is usually his social worker who has met him once. The last thing he needs is more people who don’t know him claiming to speak for him (to be fair everyone currently involved in our son is very open, transparent and sees us an asset, advocates and a mine of information, - we are listened to - but after his old providers were taken over we were shut out and there was very little we could do ourselves to rectify that - luckily the community team of professionals are very supportive and are helping us tackle that as parts of it are still ongoing). DS1 really suffered as a result of our advice and knowledge of him being ignored - I can’t give details - but other people assuming they know just as much as us because they happen to know about autism (whether professionally or because they share the diagnosis) without knowing him is dangerous imo.

Oh I took ages to type - agree with those more concise than me as well

Now though his aniexty has completely taken over everything, his is on permanent sensory overload. He has always had meltdowns, always struggled socially but the in-between times were amazing, I had a clever, loving son who was such fun to be around. That's all gone now, now I just have a child who is tired, hungry, scared and so ridiculously anxious all the time. Oh Rose My daughter is exactly the same. In 2016 she had a horrible teacher and her anxiety at attending school for that yr has caused all her current issues. I see, looking back, that she always had issues, but they were manageable (we didn't even know about the autism then. The dx was only in May '17). She wore limited, but pretty/fun clothes which she changed with ease (instead of the blue leggings/shirts she wears constantly now) she wasn't scared to try anything, she was feisty and she loved life.

Today we went to get back to school stuff (we start the school yr end Jan in Oz) and most of the ride home she just said "I want to die" because of the overload of shopping.

Her anxiety caused her sensory issues with clothing to worsen 100%, and it hasn't settled, because her anxiety causes the sensory issues, but the sensory issues feed the anxiety.

The label "high functioning" is bullshit. It helps no one and makes it seem like our kids can cope, when in reality, they can't. At low functioning levels of ASD there are indicators that outwardly show how hard their life is, at HF level, they "look normal" they don't "look autistic" (both terms used towards my daughter when trying to explain my daughter's struggles) so people don't make allowances for them the same way! They need to scrap those terms.

Please no one take offense to the terms I have used, if they are incorrect. I am (poorly) trying to get across a point with little sleep and a foggy head. If you do find them offensive, please accept my apologies.

World and

Englishrose - my son is very severely autistic and likewise it is anxiety (rather than autism) that has destroyed his life. I am hoping he can regain some of what he has lost, but it’s almost as if he has two lives. The one before the anxiety and the one after.

But I'm never going to accept your suggestion that you are better placed to discuss my son than I am. I would always 'talk over' any opinion you may have about his quality of life and his experience of his autism because you know nothing about it. Here here!

I said similar below. We constantly hear "when you know one person with autism, you know one person with autism" yet somehow some autistic adults think they know my daughter & how her autism presents better than I do...

but it’s almost as if he has two lives. The one before the anxiety and the one after. YES!! This!

I get completely why NT parents feel like that. I'd never say I speak for all autistic people, in my own family for example we have five distinct presentations so how could that be true?

Of course parents know their kids better than anyone else. I just try to offer perspectives from an autistic viewpoint that perhaps might not have occurred.

I also feel that there is a perception among NT parents of very young autistic children that this is how it is and always will be. I did exactly the same not knowing I was autistic myself based on what the professionals told me (very negative information that wasn't necessarily all true). Among autistics just as among the NT population there is the potential for change and maturing. Things can get easier not just seen with me and my children but also among friends with autistic children.

Not only that but as families you learn coping techniques too.

I'm not saying it gets easier or that there aren't challenges or that it can't be utter shit at times (having just had the week from hell with anxiety through the roof) and we're fortunate to have a PA to give us a few hours' respite and I know that doesn't happen anywhere near enough and it should.

There are nowhere near enough resources out there for autistics and their families and that's not fair. There is also a massively ignorant population out there who make life unnecessarily difficult too (not talking about the vast majority of parents here).

athenaashton