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.

Some of us are over empathetic, Suki. I get empathy burnout because I feel it too much. I cried once because of a food safety poster because the cartoon man on it had a sad face because he was allergic to eggs and the cartoon canteen server told him the item he wanted did contain eggs (Yes I'm a twit)

I agree it can be very confusing because we can be so seemingly contradictory and not at all like the usual idea of what an autistic person is like. I don't think that people would expect me to have it.I probably seem a bit 'weird' but not autistic. I appear 'high functioning, and could generally live independently' but I still experience a lot of problems because of it.

I think the key is that we all experience it differently, whether that’s as a parent or an autistic person ourselves (or both!)

No two experiences are the same.

Caring for someone with HFA isn't a walk in the park either. I'm sure there are completely different challenges but just because someone is HF does not mean it is easy for them or those who love them. In some respects it is harder because the disability is more invisible and they are expected to be NT and not need help.

@expatinscotland . I’m so sorry. It’s so heartbreaking. If we were treated like this by a partner we would be encouraged to “LTB” and people would be horrified by it. When it’s your own child you have no choice but to put up and shut up, there is no support available and god forbid you complain, because your neighbour’s vet’s sister has a child with autism who runs a massive corporation, so what’s the problem. After all, these special children are given to special mothers .

@Teufelsrad I would be inclined to wear gloves all the time when you are stressed. You can get thin hand conditioner gloves to wear indoors which would help get your skin looking nice again, and then outdoor gloves when you go out. If you do it for long enough maybe you might wean yourself off the hand biting. Alternatives to bite - lots of hard fruit, nuts? Also I noticed that they are selling amber teething necklaces which are also suitable for adults - might be worth a look.

Is it bare elastic you hate, or any elastic? I use covered hair bands to ping on my wrists. And stress balls.

Oh Expat, so sorry to hear you don't have a support network, feel free to vent on here if it helps at all and I'm always the other end of a message.

Tuefelsrad- would chewing gum help? Works sometimes for my DS when he is disregulated, doesn't help when his aniexty is sky high though. He also has a teether that he finds helpful but will only use that in his room not in public.

TeufelsradThere are a lot of chew toys, and some made into things that look like jewellery. I bite myself a bit when anxious and looked them, but I can hide my hand, not sure what I'd do with a chew as it would be wet. A couple of sites

www.chewigem.co.uk

www.amazon.co.uk/s/?hvlocphy=9046778&hvptwo&hvnetw=g&keywords=autism+chewing&hvadid=195260585440&index=aps&hvpone&hvlocint=9041128&ref=pd_sl_6h7tu12a5n_b&hvpos=1t2&hvdev=m&hvdvcmdl&hvqmt=b&tag=mumsnetforum-21&ie=UTF8&hvtargid=kwd-297816378395&hvrand=10367306022306437470

expat

I wanted to thank all of the parents out there parenting a child with autism at whatever part of the spectrum.

I'm so sorry, Expat and everyone else who is being snowed under. It is disgusting how little help is available.

I'm probably maybe autistic, IDK for sure, but DS is for sure, and it has really only got worse for him as he has got older (he is 15) and even though he is 'high-functioning' I'm just thinking that he has very little chance of functioning on his own in a few years. We have plans to leave the country but I can anticipate him doing very poorly so I should probably not be selfish.

Thank you all for the suggestions. I really do appreciate them, and I'll try them out. I also have a skin problem on my hands so moisturising gloves would also help that.

I'll keep looking for things to bite. I'll check out the links provided, some of those might be ideal. and try some different foods too. Chewing gum is a great idea. I hadn't thought of that and will get some asap.

Emily. I think I could perhaps tolerate covered elastic. It's the fear of it snapping and hurting me that spooks me, that's much less of an issue with hair bands,so I might try some thicker ones.

Thank you all again. The tips are exactly what I need.

I’m sorry if I offended anyone about the screening comment. It was more about enabling choice more than anything. I strongly suspect I have asd. I was diagnosed with borderline personality in my 20s but having two children diagnosed with asd and being late 30s now I feel it’s more asd. I was always odd. Or challenging as my mum would say. At age 11 I wanted to die. At age 13 I started stabbing my self with a compass, then a piece of glass from a broken photo frame until I got lucky and found my dad’s razor blades. Life has been hard and tiring. I’ve only ever wanted to connect. At first I thought it was just being at the wrong school. But then I got to uni and everything was hard. I’d hide in my room, experience shutdowns even on a good day it was like a switch had gone. I continued to self harm and developed an eating disorder through my desire to gain some control. I’ve felt in pain all my life. I’ve missed out on so much. I’m not an idiot but i feel extreme anxiety. And I struggle a lot with people. On the surface I’m “normal” but often described as cold and aloof. Mainly because I don’t know how to connect. I struggle to read people. Now in my late 30s I have a good script. During each pregnancy I prayed my children would be nothing like me. That they wouldn’t struggle to find joy or a connection to this world. I hate myself for having them. Because my struggle is theirs and I feel so guilty that I can’t take that away. That the world will probably always be too much and that their autism will take more than it’ll probably give. So yes I would screen for it. I’m sorry. But then I’m sorry for my children and all the others who suffer. Because they do.

Expat, I’m so sorry about your dd.

KateGrey. I know what you’re feeling. I cannot imagine not having DS but, I made him this way. He is more affected than me. Every day, the guilt is there. As I say, I was only diagnosed last week but looking back on my life, it was very obvious really.

I feel like that Suki...

I hate Autism too, I love my dd’s And their quirks but if someone handed me a pill to get rid of their autism I would. Their lives are never going to be easy, dd1 often refuses to leave the house or her room due to anxiety around socialising, her sister destroys the house so we now have locks on almost everything. I am a single mum and I can’t see any man wanting to ever live with us due to the crazy life I lead in the prison I call home.

Just got o let you know MNHQ think advocating eugenics for autism is ok. So I'm going to start advocating eugenics for being blonde.

@BishopBrennansArse MNHQ are woefully bad at tackling any form of disablism. But eugenics? Nope. That’s saying that we shouldn’t exist.

I’m sorry to the poster who suggested it, but it’s unbelievably hurtful. We’re not wrong, we’re just not NT.

Ah @maddiemookins16mum ds1 came home for 2 weeks in September after his previous providers made him homeless. A last ditch attempt to allow the LA time to put together a care package - it didn’t work, they couldn’t pull it together and he is now sectioned in Hospital 8 hours from home. He had never been away from me for more than 2 (maybe 3?) days before.

Anyway in preparation for him coming home we had to:

Cancel the first ever holiday (France) we had planned for us & his brothers
send his brothers & our dog to my parents
Remove all pictures from the wall
Take off glass cabinet doors
Lock all the TV’s and computers in one room
Lock away all China crockery and bring out the plastic plates and cups.
Dig out the deadlocks

While he was here we had to keep the kettle and washing up bowl empty & move to bathing him downstairs after we were rained on in the kitchen (entire bath emptied onto upstairs bathroom floor).

Both dh and I had to take the 2 weeks off work.

I would do it again if we didn’t have the other kids & we could find a way to work.

On a positive note the psychiatry & medical care he is getting in hospital is streets ahead of anything he has had to date so hopefully he will return to his own city (& we have some fab providers to work with him when he does) much calmer than he was when he left here.

Bloody hell I miss him though.

Although I keep finding things he trashed when he was here - I sort of like it when I do now he’s so far away.

Teufelsrad

I ended up stealing ds's 'Sophie the Giraffe' (I bought him a new one)

It's got that 'flesh' feel to it.

Sorry, not a zombie...it's got the same kind of texture as my hand, so I found it useful.

www.johnlewis.com/sophie-la-girafe-teether-in-gift-box/p231050761?sku=231050761&s_kwcid=2dx92700027450016209&tmad=c&tmcampid=2&gclid=Cj0KCQiAnOzSBRDGARIsAL-mUB2CsII4duqMPU0o74-tLtytgFgyuBRTjTi_asA6zlAnUf2arofj1i8aAvtmEALw_wcB&gclsrc=aw.ds

Oh and we couldn’t use the hob - oven or microwave only.

Sophie does look wonderfully 'chewy'. I might have to try one for home use. Thank you for the suggestion, Sadkitty86.

(Shhhh..... but I have been known to chew crocs) 😳