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.

You didn't offend all of us, Kategrey. I understand your feelings, and if I was given the choice between my child having autism and not, I'd prefer that they didn't have it.

Yes, you can have a wonderful life and have autism, many people do, but autism does make life more challenging and can cause severe problems for some individuals. Some people with it can barely function.

No, I don't think that everyone should be screened, if it was possible, but I understand people wanting to have the choice. Life can be enough of a struggle without having additional barriers in the way, and yes I'm aware that people can develop a disability at any point in their life, but that doesn't mean that people shouldn't be allowed to make decisions with the information they have available, just because they can't predict the future.

If that's considered eugenics, so be it. Perhaps we should stop all treatments for disabilities and illnesses, because that's changing who people are too, and potentially eradicating their conditions.

I'll emphasise that this is how I feel now, perhaps my views will change as/if I become more comfortable in my own skin, and I hope that I do become more comfortable with my autism, I don't want to hate,but now I can't help but feel real sympathy for parents and people who are anything but comfortable with the very real struggles of autism, and who only want to smooth their children's path through life.

Crocs? I could see how that could be pleasurable. Those jelly sandals you used to get look like they'd be very pleasant to chew. Are they still around?

I have autism and also have a daughter with autism (I am more high functioning than she is)

From both perspectives I hate autism with a passion. I also think it's the most beautiful way of looking at the world and can be a gift. Like most things in life it depends on how it's affecting you at that moment.

It's hard to be a autistic person. It's also hard to be the parent of one. Having a bad day is okay

@Teufelsrad it's taken me nigh on 40 years and because I say I'm generally happy doesn't mean I don't have challenges. So I do 'get it' - I've been through the extreme self loathing.

I also get frustrated by my body not working properly - I have RA, Fibromyalgia and need to use a wheelchair. My hands don't work properly.

I suppose I look at what I have - three beautiful children and an amazing husband. The kids have their own challenges but we get a bit of respite. We live as we like which is not hugely sociable and a bit insular but we like that. We live as we can and to hell with others' expectations. We won't make ourselves miserable to fit in.

I have the constant fear of losing everything (as a family we are very dependent on benefits) - can't see a bright side to that....

I guess I look at it that there's always someone worse off.

DevilishPyjamas and a hug. That’s unbelievably sad for him and your family.

I think it’s acceptance. If you’re okay with accepting yourself and your struggles and are happy with where you are in life. I don’t mean to be offensive and I’m sorry if I have upset people who have autism. I just would’ve liked a choice. For us it hasn’t been a blessing. My youngest is nearly five her LSAs at school said (she has 2:1) she was desperately trying to talk to them and they couldn’t understand her and a tear slid out. It broke my heart. She’s facing discrimination in her mainstream school. It is killing me. Whilst her photographic memory for puzzles is great it doesn’t stop her having a meltdown if anything no matter how tiny within her routine is changed even with preparation. The anxiety on her face, she shuts down and goes incredibly pale is soul destroying and heart breaking.

For those who’ve made peace and have found their place in the world I can understand why you’re upset when I’ve mentioned screening. If they’d had it with my youngest after her sibling I wouldn’t have had her (the same as if I’d known her condition could happen to a sibling and the risk was higher) and I hate myself for saying it. On the nights where the days have been awful and I think about not having had her I utterly hate myself and cry myself to sleep because when in the rare moments the anxiety is stripped back I see her. And that’s what I hate. The fucking anxiety. All the things the oldest sibling misses out on. The mother I would like to be. The things I’d like to have done with them. Simple things. It’s the struggles they face, the discrimination and lack of acceptance, the pain and stress they go through. Hearing your 7 year old say she hates her brain, she’s stupid, she hates that she has meltdowns and can’t control it. My heart breaks for her because I adore them. I love them completely and utterly but I hate how their autism disables them.

KateGrey, it’s impossible to make judgements about others. Because I know my son’s pain, inside and out, and because I love him so and can hardly bear the struggles he has every single day, my first thought of the morning is for him and my last at night. And often at 3/4/5 am!
He is lonely but can not connect; he wants to form friendships but at school was ridiculed and bullied until we moved him. Then, it started again, at the new school. Three youths attacked him in the park two years ago. They’d befriended him and then attacked him. The police were involved. Now, he never leaves the house. Did I want THIS existence for him? No!

The problem is the total fucking lack of human kindness. And often, it’s young people who are the worst imo. Yesterday, I say two boys making fun of a man walking ahead of them because he had a very peculiar gait. When I said something to them they looked at me all innocence and just smirked and carried on.

Fitting in does cause a certain amount of issues for my DS and I do wish the world, school in particular was more accessible to him. However atm he has been home for over half a term, the lessons we do we plan together with his needs in mind. We have a weekly planning sheet and more in depth planning sheets and whilst that has removed some of the aniexty he is still a very distressed child who rarely sees the joy in life and I am now trapped in my own home.

Dixie, same here. I’m 55. DS is an only child. I won’t be here forever. He’s so, so vulnerable. I doubt any parent would say “If I’d known I wouldn’t have had him/her” but honestly, I fear for him.

The sibling stuff is hard. For years it wasn’t an issue with us. Ds1 muddled along quite happily with his brothers. Everything changed at 15 and by the time he moved into his first placement aged 17 they were having to lock themselves away. I find it unbelievably sad when I look at photos of ds1 aged 13/14 cuddling his brothers or just sat in the middle of them having a conversation on his talker with them joining in. They now haven’t seen him for a long time (they will do, after he has been discharged, but we will need to rebuild the raltionship slowly and we can’t do that from 8 hours away). Ds3 worries terribly about him, but is also scared of him. I was surprised how hard the sectioning hit them (it is a brutal process).

re: pill to get rid of autism... I have to say that I would have probably given a completely different answer when my kid was 2 or the years following than I do now when my son is in his late teens. Whilst it can still be incredibly hard and frustrating, it is different now my kid is older and he is the only one at home now.

Devilish, I'm sorry you are going through that, I hope your family finds some peace and stability.

For me, it's getting worse year or year not better. I hope my DS turns a corner soon, hope he can find some peace. He is still awake atm, still distressed and this feels like the new normal now.

Teufelsrad

re: the biting thing, you could try one of those silicon wristband things - the charity ones? They would be very hard to break, plus they could either be chewed or snapped against the wrist, whatever works best. Or leather wrist bands/cuffs - for chewing. As they're made of skin, they might feel the same as biting your hands?

Just a suggestion! (I'm a lurker, really, and this is my first post!)

@SukiTheDog .. I quite freely say this to be honest . I'm a realist and this super cute loving 6 year old boy will be an adult one day .
My biggest fear is what will happen to ds when I'm not here. He absolutely won't be my dd responsibility or at least only in a managerial role . Of course I love very very him but life is so so hard .😔

My friend’s adult child has a leather wristband (designed to be bitten). She uses it some of the time. My son had a selection of the chewable plastic things (come in different sizes, shapes and hardness) & will use them if one is handed to him.

Buttfacedmiscreant - I think you’ve hit the nail on the head. Autism is fine (in my mind) when it isn’t causing the person affected significant distress. Once that starts happening - that’s when parents (& others - I mention parents because that group tends to be demonised) tend to want it gone.

@BishopBrennansArse It does make sense, and thank you!

I hate my dcs autism. She is nearly 5 and non-verbal, wears nappies, can't dress or feed herself. She has frequent aggressive meltdowns which are getting harder to deal with as she's getting bigger. Goodness knows how we'll manage when she's a teen/adult.

She's currently in mainstream waiting to hear of she'll get a special school place. It breaks my heart seeing what her peers can do, reading, writing, etc. She's sitting in the corner with her 1:1 making playdoh shapes and making dots with coloured pens

I'm already panicked about what will happen to her when we're gone, who will care for her, will she end up in a residential home being mistreated it makes me feel sick.

Holly I hope your daughter gets a sn school place soon, it took me 7 years to get my dd a place in a specialist ASD school, she started in September and it’s lovely to see her in a setting where she fits in, she has changed so much in a term at her new school. She now gets to stay there until she’s 20 and we will then look at what to do next, I hope that we will find her sheltered atomisation or a house share (with care) so she can live independently. I always worried about residential care but after looking at many options there are some good places out there (don’t just concentrate on the bad things you hear on the news, abuse is very rare). For me a residential will be key in making dd independant enough to survive without me when I am gone. When she was younger I was petrified of the thought of not having her with me but now she’s getting older I feel that at some point it will be the right thing for her.

Holly - ds1 was in mainstream until 5 - disaster! - his life improved dramatically once he moved to special School. Fingers crossed for you.

In terms of adult care - there ARE good providers. Ds1 is in his current situation after his provider was bought out by a much larger company but that hasn’t really shaken my confidence too much because I saw what good providers looked like (before the buy out) and the people we have lined up now are fantastic (& won’t be bought out). Even the worst case scenario of an ATU which has kept me awake for years has ended up being a lot better than I expected. Yes there are issues with being in a large institution - but there are some positives as well. When he first went in I just wanted to know when he would be out and felt completely panicked. Now I would be arguing for him to stay until he is ready to come out (they are doing some good stuff that could not be done safely out of a hospital environment). That may not sound much but it is quite a massive change in my thinking.

That’s all to say please don’t worry too much about the future, with severe autism - it all comes down to finding the right provision. My only regret is that we didn’t surf more (& we surfed most weeks for a number of years). Try and enjoy the moment - especially when it’s a good moment :)