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.

There's also the massively undiagnosed number of autistic women who remain undiagnosed, of which I was one up until recently, @Verbena37 .
@BlackeyedSusan agree totally. The wait and see approach might save one department"s budget for a bit but I'm damned sure that it'd save other budgets later if intervention was put into place early.

Autism support groups are hopeless. The spectrum is too wide (too many autisms). I found the groups at my son’s special school (different dx but all high needs) to be more useful.

@ThumbWitchesAbroad although it could be said any NT child could later develop long term MH issues and a parent wouldn't want that for their child either.

Not diminishing your friend's experience in any way - pda is rough on both parent and child, we suspect DD has it but they don't diagnose here.

@Devilishpyjamas our local group is openly hostile to autistic parents of autistic children and won't discuss anything post 18. Because you get cured then, right? 🙄

I think unless support group is large you can find others in the same situation as you they just don’t work. Ours tried to be welcoming but I just came out more depressed than I went in because ds1 was so far behind.

I've been trying and trying to think of a positive about my autism, and I've struggled but I can think of two.

1. It's a good excuse when I can't stop talking about my favourite things. I mean it is why I can't stop talking about it, but at the same time it's a great justification to continue anyway, even if I'm able to pull back on the reins a little(Depends on the day)

2. I have a 'game' where I'm watching a movie and I imagine running my hands all over everything in the room and 'feeling' it. Hair, desks, food, furniture etc. I can almost really feel it when I do that. It's hard to explain how, but I would miss that.

"But then, if you offered me a pill and said it would take away my own autism, I'd say no. For all the misery, anxiety and it's caused me (and difficulties it must have caused others) I still wouldn't change who I am. Because it does have it's perks.

It's not our fault all you normies have set this world up so weird grin"

This is where we are at. My kid does very well, he has lots of support and has learned lots of coping mechanisms that help him. I agree that the spectrum is so wide it is impossible to generalise. He also has anxiety about a lot of things but he is lucky that we've managed to find work arounds for many of them.

We have told him over the years the same thing Sadkitty, if ASD was the norm then NTs would need support to function in that world. They would be the square peg trying to fit in the round hole.

We discussed the same thing (a pill to take it away) and both he and I said no, it is such a part of him and it would take too much of him away. I understand that this is not the case for all autistic people... because the spectrum is so wide.

Totally agree with the OP.

Can’t face reading the whole thread as doubtless it will be populated with people with high functioning autism who are extremely intelligent and write so eloquently they put everyone to shame, not just those on the spectrum.

I would be delighted if my DS had that type of autism. I would be proud to call them my child. Unfortunately DS has the type which means I am constantly cleaning up shit and piss, covered in bruises, haven’t had a good night’s sleep for many years and basically wish myself dead every single day as looking after him means I have no quality of life. I dread weekends and school holidays as I know it will be relentless 24/7 care and every single plan or outing will be dependent on his mood that day. I have no keepsakes or nice things as he has broken them all. My career and health are completely fucked and my marriage hanging by threads. That is my experience of autism.

I wish people would realise that no disrespect or ill will is ever meant to others with the condition who are high functioning. People have no idea of how difficult it is caring for someone so low on the spectrum and should not try to censor or berate others who are just trying to explain their own experience.

For the people asking how to help people with autism(Apologies but I can't remember who) there's already been some great advice, but what personally works for me is people listening to us and following our requests even if it seems counter-intuitive.

An example. I have emotional lability(I cry at the drop of a hat, for no reason at all, and often when angry) if I start randomly crying please, please, give me space if I request it. I'm not actually upset, my brain is just malfunctioning, and if I'm ignored it'll soon stop. If people make a fuss over me it just gets worse. I know it's natural to want to comfort people but for me it's the opposite of helpful.

Likewise if I'm struggling with sensory overload, please let me have space and don't touch me or talk to me, even if I'm distressed. It only takes a tiny sound or touch to tip me over the edge sometimes. I once went into major sensory overload because my dog turned his head too quickly. (No, I don't know why either)

@Emily7708 I find functioning labels unhelpful as it diminishes the things I do struggle with. And I do struggle.

I agree bishop I think I said similar earlier in the thread. Ds would be classed as high functioning but that doesn’t mean life is easy for him. He is currently in a meltdown state head banging (against the sofa cushion thankfully) for reason unknown (smell of my tea would be the best guess?) and won’t let me near him

I don't suppose that anyone has any advice on how to stop biting yourself when you're frustrated, angry and can't get your words out, or are in sensory overload? I'm tired of my hands always being so painful because the skin is always split and broken.

Someone suggested that I ping an elastic band on my skin to give me a similar sensation, which might work, if I didn't have a fear of elastic bands.

'I would be delighted if my DS had that type of autism.'

Mine has 'high-functioning autism'. He frequently becomes violent the instant something doesn't go his way, smashes stuff up, smacks us, throw things and smashes them up, has meltdowns lasting hours. He's got 'just' the HFA diagnosis, but I'm certain he has PDA in it, too. He doesn't sleep in school holidays, he can be nasty and violent. Everything is a bloody uphill battle. It's no picnic at all.

I'm so worn out with it now DD1 is dead and on top of everything else, namely poverty-related and also frequently wish I were dead. In fact, if it weren't for DD2, I probably would be.

(((((()))))

@Teufelsrad find something else to bite?

Expat- I'm sorry your going through such a hideous time. Do you have a support network?
My Ds would probably be deemed HF in the old diagnosis terms as well, these days they just diagnose 'Autism' for all to try and remove the misconception that someone with Autism that has a high IQ/no speech problems etc also has less emotional issues because that just isn't the case. After very little sleep last night he has been on the edge of a meltdown all day and is currently building up to one, he wants to go out and get some fresh air but he doesn't want to leave the house.

Earlier someone mentioned smelling books, I'm not autistic but I had to smell all the uni brochures when I was picking where to go, no idea why but I was genuinely put off by the ones that smelt bad.

I really really really disagree that autism is the next phase of human evolution. I see it a lot but totally hate that idea and don't believe it. I do think it's an idea that many highly intelligent high ability people with autism have but most people with autism need so much help especially when younger. I don't have to fight hard to run away from my screaming child as a mother with autism might have. I know a mom with autism might cope better with other things but maybe not the noisy meltdowns. And I just can't see what this world would be like if EVERYONE had autism. So no no and no again.

My autistic nephew stayed with us at Xmas and I could see first hand how it affects his family.

His mother in particular is a shell of her former self. No job, no friends, no life outside her child's autism.

Even if her son reaches some form of equilibrium in the future it won't change these years and the fact that her life has been decimated

• fight hard not to run away

I didn’t mean delighted if he had “high functioning” autism - just any type that meant he wouldn’t be completely dependent on me and require complete care for his entire life. The type where he can look after himself and wouldn’t be such a burden to others.

I understand that everyone has different struggles and issues and do genuinely sympathise.

Thank you for responding. I've tried biting a few things, BishopBrennansArse, but nothing seems to satisfy. Pillows don't work. Clothing and notepads don't work. I do wonder if a stress ball might do it, or if I'll lose my teeth if I do it. I should probably go look see what's available on Amazon.

I also hit myself sometimes, pull my hair and scratch myself but biting seems to be my first resort, and it shows in my hands. Hopefully if I keep looking I can find something with the right texture.

slane I agree.

My nephew struggles with basic human needs. Needs to survive let alone thrive.

How can that possibly be evolution?

Emily7708, I agree. The spectrum is huge. I don’t think there’s more autism today. I think it was hidden from view in “olden time’s”. I think families had kids who were different/odd/mute/flapping/still in nappies at 10. Often, these kids were out into institutions and remained there, for life. Then, the higher functioning. Those who were “quiet”/lived with their mums all their lives/never married/did basic jobs and were socially odd, keeping themselves to themselves whilst enjoying their train spotting/birdwatching or whatever. Then the near genius ones...Einstein, Isaac Newton, Michaelangelo, Charles Darwin and Temple Grandin.

My DS who’s now 17 has asd. Diagnosed aged 4, we were constantly told it was “mild” or “high functioning”. Now, we’re told he has profound difficulties and is “very autistic”. He’s eloquent, continent and washes/dresses himself. Good at art. Has empathy, good eye contact. It’s VERY confusing.

I was diagnosed as having autism, last week. I’m not “a bit” autistic because I don’t smear and flap. I think the condition requires differentiation. For anyone who might be shocked (this includes my own mum) at my diagnosis please understand that I do have autism but, it’s MY version of it. I’m not very disabled by it but, I do have it.

And the deficiencies I have have had huge impact on my life. I will never again fell suicidal about my “lack of” and “not fitting in”.

My DH works with autistic teens in a residential setting. He rarely (if ever) talks about work for confidentiality reasons he says. Last night he came home with yet another horrible bite mark on his face. He has a permanant scar on his shoulder blade from another incudent.
He has though said in more than one occasion (in limited detail) how it rips the heart out of many a family due to guilt, resentment, jealousy and the awful day to day grind of cleaning shit from walls and having homes literally torn apart (TV's ripped from walls etc), even families using plastic plates and cups because they simply cannot keep replacing the crockery that is broken at every meal.

That said, he'll go to work tomorrow in his 'special' T shirts because he knows the 'guys' at work talk to him about them every day as they love what he wears and get upset if he doesn't.

'Do you have a support network? '

No. We're rural in a poor council and no chance of moving as we have a council flat.