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.

I got slapped yesterday even though he'd had warning for fifteen minutes that his activity was going to change. He was flapping and screaming. We're right at the start and there are now 6 different areas he needs outside school assessment for. There's just no fun. He won't wipe his butt and had large brown area in his pants. He has disposable gloves and wet wipes and visual instructions. This made the cat pee on my jeans. I had just had a bath and didn't notice and realised when put them on. I feel disgusted in my own home. It's relentless.

It's hard being a carer too, NikePhorus. It's a different type of 'hard' a different experience, but it can be utterly exhausting and I've been an unpaid carer(not to someone with autism, but someone with dementia, and a terminal illness, and on another occasion to someone with epilepsy) and it was all consuming and yes trying to adapt to their needs was far from easy, even if necessary and best for all concerned. In fact being a carer just about tipped me over the edge of my remaining sanity, though I'd do it again if necessary.

Likewise I'm now in the position of needing support at times from family and friends due to my autism and mental health issues, and I can't deny that it can sometimes have an impact on them. Yes it's much harder for me, but I can reserve some sympathy for them too.

I have no trouble believing that you do, DevilishPyjamas and it's very wrong, and foolish, to dismiss your experience.

It's not quite the same thing but I cared for a family member with epilepsy, and although I've never experienced it myself, I learned so much by being a carer and I know far more about it now than even many so called 'medical professionals'. It's amazing how much ignorance there can be in the profession(and we've had some incredible support too). That experience shouldn't be dismissed just because I haven't personally suffered it.

I do try and listen to everything people say to me. Lucy Blackman for example is non verbal and typed a book - I have a feeling she experiences the world in a very similar way to ds1 (from the things she describes) - and I reread her book regularly to give me insight.

I think that most of my autistic issues would still exist even if I lived in an autistic world(And I wouldn't want to live in one anyway). The majority of my behaviours and issues are inherent and not triggered by external stimuli(though I do have major sensory issues).

What would this autistic world look like anyway? We're all so different. Take relaxed performances for example. They're a wonderful thing for many people with autism, who need to be allowed to move around and make noise so that they can access the theatre. I'm glad they exist and there should be far more of them, but I shudder when I read that some think all performances should be relaxed.
I'd never be able to go to the theatre because a relaxed performance would send me into sensory overload. A standard performance(Assuming everyone is being considerate) is much more accessible for me.

I haven't read her book. Thank you for the recommendation. I'll certainly pick it up.

My friends son has autism, he's 10 and in a mainstream school. School have been next to useless, 6 classroom assistants in 4 months as an example. Segregated at playtime.

She had a meeting last week with school where they talked about high school, and basically said he won't be going to a mainstream he needs a special school.

She was telling me, and she looked down at her hands and looked up again. Without a sound, tears were streaming down her face. She then said 'it's just hit me, he won't be going to high school, he's not going to have a schoo life like me and his dad did'. She then spoke about things he would miss- prom, first kiss, going out at weekends with friends, even under age drinking.

She like everyone else, loves her son more than anything and she wouldn't change him, except for his autism. If he could 'take a pill and it would go away I would start him on them today' is her words. It's not him she hates, she loves him, it's his autisim and the behaviours it causes.

Currently she's dealing with smearing and hiding poo- everywhere. Yet on a scale of 1-10, he is a 4 on behaviours compared to what I have worked with.

But a few pp have highlighted a worry:-. What happens when your child is older? What happens when you pass away? If they need 24/7 support can you get a service placement close to home? Or will it be miles away? You've know your child for 16/18/25/30 years, yet now a support worker has a day to get to know them. It's difficult and challenging. But thankfully there are some amazing services out there, who will provide your child with the best support they can.

For those of you who have autism and accept it as a positive in your life, that is brilliant to know (and that's not patronising), it is good to know that she it not always seen as a negative. But for those who face far more difficult challenges you are allowed to feel the way you do, and there is nothing wrong in that, and doesn't mean you love your child any less.

Autism is so many things

I understand that this is a generalisation which obviously makes it a blunt instrument but the people who are able to argue that their autism is part of who they are and is either benign or a blessing are, by definition, nothing like my son and his peers for whom autism is a nightmare from which I wish he could awaken

I have no idea what's its like to have autism but equally some people with high functioning autism have no idea what its like to be the parent of a child with severe autism and learning disabilities its not just a difference or a different ability hes severly disabled by his autism this is my reality anybody else's reality isnt my concern.

I've never posted much here before. But on other sites, for example, if a cure for autism is mentioned. The majority of ( adult high functioning ) posters will say it's not a disability and they don't want a cure. I often wondered how prevalent is this thinking. To me I always considered it as a disability like deafness. Many deaf people are happy to remain so and wouldn't seek treatment. I also cannot picture what an autistic world might be like?

Not all high functioning autistic people accept their autism.

Who is going to answer Yabu to this question?

My son won't have prom, or a first kiss, or marriage...at least, I highly doubt it, since he loathes touch of any sort and hasn't had a hug in 10 years. I don't take anyone else's devastation at this realisation in their children badly, I am sad they are sad. I don't feel that way for my son though. It's hard to explain, but that isn't what he wants, so I don't feel bad that he won't have it. It'd be different if he was desperate for love and couldn't achieve it; that would be heartbreaking. But since he doesn't want those things (really- he'd be happy with a dog) I can't be sad on my own behalf that he won't have them.

I speak for myself no one else but if there was a cure for my son's version of autism I would take it in a heartbeat don't nudge me untill you walk a mile in my shoes.

Judge*

You're complaining that you have to move your boundaries and adapt? Has it not occurred to you that those of us with autism have to do that EVERY DAMN DAY?!

There is room to acknowledge that it's hard for both groups, you know. It doesn't make it any less hard for those with autism if we also acknowledge that life can be tough for parents, siblings, other extended family, carers etc.

Our mainstream school are utter bastards. All the services say they’re criminally negligent yet no one can hold them to account. I hate the anxiety. How simply leaving the house without a hat or coat is enough to make her world implode. I’m tired. I watch a video of my eldest who is nt and it broke my heart how simple and easy it was then. How everything felt natural. Now everyday I’m judging, teaching, getting grief from our shitty school simply because she goes there (even though she’s doing nothing wrong). I’m so frightened about something happening to me. And the life they will have after. I hope to god none of them have children because this has been an incredibly hard road. I love them. But I hate how their autism disables them!

I have had a week where I felt my head was about to explode because I had pompous arses on an Aspie group telling me that ABA is child abuse and I subjected my severely autistic dd to it for my benefit not hers.

I am just so fed up with this crap. My daughter was a happier person once she learned more about her environment and she still uses those skills now. She's still a very complex child and is now in a residential school for children with autism but ABA has helped her so much.

I'm a HF autistic myself. Even though some of my problems are different from hers we still do have a similar sensory profile. And in many way I can still relate to her. The Chris Packham documentary has really peddled anti ABA propaganda. I get so cross with arrogant idiots on the internet patronising me and telling me I should have learned how she was communicating. The NT world won't adapt to understand my crappy theory of mind and the fact I switch conversation threads without warning. To say that autistic children should be left in their own world is, IMO cruel. And very regressive.

WhoWants2Know good post

Oh and I might be at peace with it now as I approach my 40th birthday but my teenage years were miserable.

That's the thing lottie if something works for your child than great autism is such a huge spectrum no one has any right telling you, you are wrong for using it as a pp said autism isn't one disabillity its many and everybody has different experiences yes to get a diagnosis there has to be some similarities but that's where it ends one group of people can't speak for everyone on the spectrum because they have no idea how it affects everyone .

I think it’s worth mentioning, without wanting to upset anyone, that whilst I completely understand that I have no idea quite how terrifying, confusing and frustrating it can be to be living with ASD in an NT world, that doesn’t reduce the difficulty that is parenting an ASD child. The challenges are different, not less or indeed more.

We home educate because the school failed our dcs, and the schools/LAs are not held accountable for that. We had to fight for any and all support, both educational and medical. Yet because 2 of my dcs have SNs and are home educated, our parenting is questioned regularly and we feel that we need to justify our home ed by showing progress, whereas the schools NEVER had to meet that bar. My dcs are progressing MUCH better with home ed than they ever did in school, yet every meeting, every appointment, it's "hmm...home ed?" with a raised eyebrow. Thank god we've now got a supportive GP. I cannot understand how a educational professional can see a small child sobbing, having to be carried away from the school daily, refusing to do any work because the teacher refuses to differentiate it even though they know the child can't understand it.... yet that ed prof says "oh they're fine." School should not be traumatic.

oldbirdy

You make a really good point. I think with my friend, her son accepts some forms of touch but obviously only when he initiates it. So he can be very loving at times.

I think. part of her feeling so low about him missing out out on things is that she's grieving in a way. Grieving for the life she thought her child would have. Does that make sense? (Sorry if that is the wrong words to use I don't mean to offend anyone).

I think. part of her feeling so low about him missing out out on things is that she's grieving in a way. Grieving for the life she thought her child would have. Does that make sense? (Sorry if that is the wrong words to use I don't mean to offend anyone).

For me, and other parents I know, getting the ASD diagnosis you almost go through the same stages as you do in grief. There’s anger, disbelief, self-blame, guilt, utter sadness, vague denial and eventually acceptance. It’s a rollercoaster!