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 can with trusted people. Not all the time.

But it can really hurt if forcing myself.

I can manage flickering eye contact if pushed with people other than family but it makes my skin crawl (I can’t think of a less horrid analogy)

I can do it with my own children, and DP but that’s it. Even then not for long. My kids cope ok with it but it has never been forced, not once.

Well, that went well. Persuaded him off the screen to do some colouring with wax crayons. He wanted to do it himself, wanted to do a rainbow and said his colours beautifully, lined them all up in a row and started. Third try before he flipped out despite the mantra in our house being perfect is the enemy of good. Asked me to fix it. I did it wrong apparently because I added some rain. He has just bitten me. He is 4.
Whenever something does not align with what he had in his head, he loses it completely and becomes aggressive. He also does a lot of bargaining - I will not do x unless... and If you do not do y then I am going to (take all my clothes off/hit you/scratch myself)
It just feels like blackmail. Sorry for venting. It must be exhausting being him and trying to control everything all of the time. It's exhausting being on the receiving end of his frustration.

I really don't understand why eye contact is such a big deal in the NT world.

The short answer to that is that it's a well established social expectation.

Eye contact is seen as part of the wider issue of good manners, a way of showing that you're paying attention and a part of open body language. In addition to being seen as rude, inconsistent eye contact can be perceived as a lack of honesty and as such people can be distrustful of those who either don't make eye contact or keep skittering away from it.

Breaking away from the social rules that have been ingrained from an early age can be incredibly difficult!

On a different note:
Knowing the right thing to do is made difficult when conflicting information and advice is given; I have a member of staff who explained their particular challenges before coming to work for me, I set up their work space accordingly - only to be told by the disability integration team that I shouldn't have done that because it marks this person out as different (the person in question loves the set up and is both calm and happy with the space). More that 2 years later I'm still being hassled for making what I consider to be reasonable adjustments, my employee's feedback is being ignored and I'm a hair's breadth away from asking the integration team leader if they have any processing difficulties I need to be made aware of (I won't because it would be inappropriate but it's oh so tempting)!

@Andro if wetting your finger and sticking it into a socket was a 'social expectation ' would you do it?

Similar thing to expecting autistic people to make eye contact.

I find it pretty rude that some people can't make allowances to be inclusive tbh.

@HangingRoundInABofAlorsStance if it helps the violence did reduce with DD when she got a bit bigger and we could try and ask her to 'use words' before it kicked off too much. Not saying she doesn't kick off now, she does, but it's noise and stomping rather than biting.

Again not saying it happens with everyone but here's hoping it does for you.

Andro - that's a difficult one but I think that you have done the right thing because your employee is happy with the situation. A short while ago there was a thread on here from a poster whose MIL had recently been diagnosed with coeliac disease, and she'd bought her special gluten free gifts. The OP's friend had gone off at her and said it was very rude to get her "special stuff" because it would make her feel different. Most people on the thread said that they'd be far more likely to be grateful than insulted - but it turned out that the OP's friend also had coeliac disease, and she would indeed have been insulted had the OP tried to make any effort to get her "special stuff". Some people would rather struggle with their differences than have any one notice their differences, it seems, so that's where your inclusion team are coming from. Listening to your employee is a much better option.

I think Andro was just explaining the theory behind eye contact not that it is their own personal expectation, given their work in making adjustments for an employee - with regard to that Andro, I think you tell the integration team leader to speak directly with employee so they can reassure them their workspace is what works for them.

Hope so Bish - he got thrown out of Kindergarten last week for hitting the staff. He is verbal but could not control his anger or calm himself down according to the staff and it was scaring/shocking the other children. They had made the following provisions: He had a tent as a safe space, he did not have to wear slippers just his Stoppersocken, he did not have to join in with circle time or eat if he didn't want to but he was expected to stay in the room, sit and wait while others finished eating/talking and he was expected to stop doing his activity when the gong went for snack time.

Yeah I can see why he couldn't do those things tbh.

Ask them to provide a sand timer so he knows when the gong will sound perhaps?

Being unable to physically get out of the room I can understand is hard too. Could he perhaps have some ear defenders too so he can 'remove' himself (as I can understand letting him leave the room is a safety issue).

“get it” and “fit in”. I suspect she has never had to look at a person she loved more than anything and imagined that if it came to it, if he botched his own suicide, she would help him. That she would then, quite happily end her own life, because being without him will crush

Again, I have no interest in explaining to you or anyone else what my experiences are.

Fionne you’ve crossed a line now. Don’t, do not, use something so distressing and be so fucking flippant about it. You’re bang out of line.

if wetting your finger and sticking it into a socket was a 'social expectation ' would you do it?

Something so dangerous would be - or at least remain - a social expectation. I wouldn't willingly endanger myself physically in such a way, but I've lost count of how many times I've endured social situations I loath because it's expected of me.

Similar thing to expecting autistic people to make eye contact.

I was aware that eye contact can be physically extremely uncomfortable for some people with ASD, I was unaware that it could approach being so physically dangerous.

I find it pretty rude that some people can't make allowances to be inclusive tbh.

How would any person who didn't know your (and by that I mean those with ASD generally) diagnosis know when to make allowances, which allowances to make or how to differentiate you from someone who was just being plain rude? Allowances should be made where needed, so should adjustments (in my opinion, some at work clearly don't agree), the difficulty is knowing when, what and how things need adjusting.

^^would not remain a social expection

HangingRoundInABofAlorsStance

That is what i was doing.

That ship has sailed sadly Bish - when I say kicked out, I mean he was permanently excluded Friday and 3 months notice we would normally have had forfeited because in their opinion, they could no longer accommodate him, had to protect their staff and had done all they could for him. Hence me quitting my job yesterday.
We were handed the names of two kindergartens that have provision for SN - although if my German is correct at least one will not take children with a severe physical or neurological disability - and currently there are no places/ we have to jump through hoops here to get a diagnosis/special referral.
He is 5 in June, is a preschooler Sept but not expected to attend primary until Sept 2019. He will be 6 1/4 then. They spend the first year doing letters, numbers and shape. It is all done much later here but then the difficulty escalates quickly the older they get.

Fionne you’ve crossed a line now. Don’t, do not, use something so distressing and be so fucking flippant about it. You’re bang out of line.

No one has any idea of what my experience of ASD is. Well not under this username anyway. If you would like to think I have no idea about life for those on the spectrum then that’s fine. It’s all assumption on your part and the part of others. I won’t be trying to change anyone’s assumptions anytime soon.

The eye contact thing isn’t diagnostic anyway. My severely autistic son makes very intense eye contact. He’s non-verbal and it’s one of his main communication tools.

Eye contact is seen as part of the wider issue of good manners, a way of showing that you're paying attention and a part of open body language. In addition to being seen as rude, inconsistent eye contact can be perceived as a lack of honesty and as such people can be distrustful of those who either don't make eye contact or keep skittering away from it.
I think you forgot to mention that "it is seen....BY NT PEOPLE...." - us autistic people don't have the same view (and presumably some NT people agree). There are plenty of ways of demonstrating attentiveness and honesty that don't require eye contact. Personally I think that forcing people to establish eye contact when they find it difficult is rude but hey.....

@Fionne I feel for anyone who is autistic and has to deal with your lack of empathy (yes I’m aware that enormously ironic) and hurtful attempts to distress. So I’m disengaging now.

ABA may be the only way to teach skills to a very severely autistic child. We’ve never done a full ABA programme and I have issues with discrete trial training if the child isn’t a willing participant (largely because it doesn’t work without some engagement) . But we taught ds1 to imitate (aged 8) via ABA and and we taught him a functional yes and no (aged 10) via ABA. Both those things dramatically changed his life. We tried other methods as well but ABA was the one that worked. Certainly ds1 enjoyed those sessions - he made it clear when he was no longer interested and we stopped. We use concepts of reinforcement all the time with him though and functional behaviour analysis is an essential part of his life. I wouldn’t let him near anyone who wasn’t being supervised by someone able to carry out a functional behaviour assessment as he’d probably end up thumped around (ds1 would end up thumped I mean).

Now he’s an adult with very physical distressed behaviours it has to be said the people who are ABA/PBS trained - to a professional level (do not the Mickey Mouse PBS that is being rolled out here there and everywhere as the latest buzz word) are the ones who really understand that ds1 is distressed not naughty and the ones who are most likely to speak out FOR him and work to settle his distress. They are an essential part of being able to bring him out of hospital to live in his own home.

Bloody hell fire. Is it so hard to understand that if you've met one child with autism, you've only met one child...and if you've met one parent of a child with autism, you've only met one parent.
It surely is not a race to the bottom/suffering competition, surely to God? Can this thread not just be a safe space for people to vent whatever their circumstances? Can we not just empathise and support each other in our respective situations?

I think that’s really important hanginground - and why I think it’s important not to ABA bash. I think it’s wise to have discussion around 40 hour programmes for pre-schoolers and wise to remind people that it’s right to walk away from an intervention if it seems to be distressing their child (although tbh in the case of ABA the distesss is usually around DTT and a lot of people switch to NET). I personally also think that if people are doing lots of ABA they may want to look at relationship building as well with something like Intensive Inferaction. But the idea that ABA is always torture, is always dog training and has no place anywhere is dangerous.

The first thing my son did after learning to imitate was join in with me and his brothers dancing around the front room to some music. That’s a success story.

Without imitation he would never have been able to surf either - not in the way he did - and that gave him a community and a lot of peace for a long time.

us autistic people don't have the same view (and presumably some NT people agree).

If you wish to be strictly accurate, that 'us' needs changing to 'many' - I have met several autistic people who consider eye contact to be good manners in the same way that most/many NT people have been taught.

Personally I think that forcing people to establish eye contact when they find it difficult is rude but hey.....

I'm not advocating forcing anyone to make eye contact, I was attempting to explain to another poster why it's seen as being so important within the NT world (mostly).

Fionne. I don’t give a hoot about your asd experience. As a human being, there appears to be no kindness in you.

I feel rather sorry for you if you’re getting a thrill out of posting your goady thoughts on asd. Why are you on this thread? I was diagnosed with asd last week. I am empathic and I know how to show kindness and comfort. What’s your excuse for being as you are? I was a nurse for 26 years; a rather good one. You Fionne are just spoiling for a fight.