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ASD: what do you find really hard to deal with?

38 replies

notactuallyme · 02/10/2012 18:57

I can accomodate all the sensory stuff, all the awkward socialness etc. I find it really hard to keep my temper when he calls me a stupid woman, or calls dh a dickhead. I KNOW its because he can't articulate his feelings very well, but its really hard to remember that when faced with a superclever child shouting abuse in your face. If I walk away, has he won? He knows it's wrong (when calm) but still reverts to it when angry. And triggers (to avoid him getting angry) aren't always easy to find.
Every day I remind myself to be patient and calm, but some days I end up shouting.

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phlebas · 03/10/2012 22:23

A year ago it was the ignoring everything I bloody said, that has thankfully improved. Now it is the intransigence; the complete inability to negotiate or compromise.

Also the roaring, and the humming.

Intractable bowel issues.

Food phobias (sensory I think - ds puked in the queue in M&S last week when a very smelly (made me gag) man stood next to us).

moosemama · 03/10/2012 22:37

This evening what I'm finding hardest to deal with is his teacher's refusal to believe he has ASD and as a result deciding he doesn't need the support set out in his hard won statement. Angry Of course she is the most qualified person to know, far more qualified than the 9 plus professions who were involved in his dx and SA. Angry

Ahem ... other than that, on a day to day basis it's the horrible way he speaks to his little sister, his inability to consider the needs of others or understand that he can't always have things his own way and ahead of the needs of other or that other people are just doing their own thing, rather than deliberately doing things to 'get at' him.

That and not ever getting a moment's peace from his stream-of-consciousness fact stating and questioning.

I love in sooo much, but yes, I am exhausted - all the time.

sazale · 04/10/2012 04:13

For me it's the constant demand avoidance/oppositional behaviour. It's so constant and tiring. We just go from one meltdown to the other where she yells how we abuse her and that we're dead to her etc etc. it's the living in a house of constant shouting either trying to calm a meltdown or on edge waiting for the next one. Also the way she speaks to my ds (he's 5 she's 13) and criticises everything he does. I'm a glass half full type of person but dd is a glass half empty one!

notactuallyme · 04/10/2012 07:44

Oh moose amazing how many teachers have managed to qualify as hcp!
Seems like we are all pretty exhausted most of the time...

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purpletinkhue · 04/10/2012 09:32

for me the hardest thing to deal with is when my DS has a meltdowns or gets really really anxious I am the ONLY person who can understand him and only person who can get him to calm down,if anyone else tries it goes horrible wrong as they don't understand to just agree with him until the situations calms down and then try to explain how he could have dealt with it better,they just dont get him. My greatest fear is adulthood......it keeps me up at night worrying about it....xxx

cantgetoutofbed · 04/10/2012 10:00

The fact he can't talk. If something is upsetting him he can't tell us what it is. It breaks our hearts.

TirednessKills · 04/10/2012 10:35

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Message withdrawn at poster's request.

purpletinkhue · 04/10/2012 11:23

TirednessKills,my DS also has very good verbal communication and advanced vocabulary, but little pragmatic skills so his sententaces or how he joins the words up to make a conversation makes little of no sence to others.
It gets him into a lot of bother in social areas as he picks things up wrong or says the wrong thing,well not the wrong thing to him but to others ifyswim.
Trying to work on the pragmatic side of things for him but it is very hard and a long fustrating process as with his AS he is very set in stone on his way of thinking.

moosemama · 04/10/2012 11:30

That's exactly it Tiredness.

We recently went for what was supposed to be a SALT assessment, as ds hadn't had any SALT input or assessment at all, not even during the supposedly multi-disciplinary assessment and the Paed found out. The assessment unit said they had felt he didn't need a full assessment as he scored so highly on the Verbal Comprehension element of his WISC IV assessment. Hmm

The thing is, it's not comprehension, so much as communication skills relating to expressing his needs and feelings that's the problem. He doesn't understand tone of voice and intonation etc, which leads not only to him sounding extremely rude when he doesn't mean to, but also him 'reading' other peoples' expression and tone of voice wrong, leading to endless arguments.

Much was made during SA and in his Statement about the need for him to significantly improve and develop his emotional literacy skills, but no-one is addressing the problem of actually being able to communicate those feelings, emotions and needs, if/when he learns to be more self-aware and understand his own emotions better.

Apparently NHS salt 'don't do that' in this area - only functional language problems are handled here due to huge demand and under-resourcing. Hmm

He was having 1:1 Inclusion Team sessions, because his anxiety and emotional issues were so bad, but his inclusion teacher has been landed with a huge extra workload and is going to have to drop the sessions. His statement just says the emotional literacy work should be done by someone properly qualified to understand and work with emotional and anxiety issues in children with ASD and this should be achieved through specified intital and ongoing training, plus professional development and attendance on a programme such as the Government's new Autism Education Trust Programme. I had to fight for that, despite the EP being totally in agreement and I only got it because threatened appeal if it wasn't included.

What did he get from the school? A completely unqualified TA, with no more than attendance, a year and a half ago, on the very basic whole school one day ASD awareness that even the handyman and lunchtime supervisors attended. Hmm I specifically questioned the SENCO about this TA's training and qualifications and she mumbled something about the inclusion team saying the whole school needs another 'awareness top-up' day and that she would have inclusion team back-up. The woman they have set up as his support and to work with him in development of his emotional awareness and anxiety issues has no idea how to handle children with ASD, or how having ASD affects their communication and self-awareness skills, yet she is also supporting another child with ASD at other times of the day. I have personally watched her royally stuff up her handling of the other child, resulting in him shutting down and hiding in a corner, terrified, in front of all the junior school parents at pick up time. As a result I was desperate for the school not to allocate her to ds, whilst knowing full well that that was exactly what they would do. Sad

School have 'interpreted' the statement purely to meet their own needs in terms of resourcing - nothing to do with ds's needs. In fact they have specifically chosen to set things up in such as a way that they can't meet his needs, whilst trying to tell me he doesn't have those needs. Angry This is despite the statement actually being very specific in some of those areas. Needless to say, dh and I are gathering evidence and will be employing the steel-capped butt kicking boots very soon. Unfortunately, the LEA's Statementing Officer refuses to believe the school SENCO ever does anything wrong and said it was fine for them not to have implemented his statement as it was 'early days', that the school has to be able to interpret the statement to be able to meet his needs and they only have my ds's best interests at hear and the best one ... apparently my issues with the school are purely down to my own problems with lack of trust! Shock Angry

I am so sick of the fighting though. I thought I might at least get a little break once we won the statement. Should have known better. Sad

moosemama · 04/10/2012 11:31

Apologies. Blush

Didn't mean that to turn into a rant. I am just beyond frustrated with it all at the moment. Sad

TirednessKills · 04/10/2012 11:41

This reply has been deleted

Message withdrawn at poster's request.

troutpout · 04/10/2012 12:01

Other people's lack of thinking outside the box when dealing with ds. For people with supposed ' theory of mind', their inability or unwillingness to see things how he might see things. Their lack of imagination and the problems this causes him.
Sometimes it makes me want to scream . I find myself losing more and more patience with the nt world he has to navigate.
This is the thing I find the hardest.

notactuallyme · 05/10/2012 09:54

Can't get out of bed - that must be really difficult. I feel at least with ds i can get him to try, if i ask the right questions to tell me how things are/ what is bugging him.
Definitely the other people's thinking - i feel like every meltdown due to something we have to roll back 20 steps to find out what triggered it - so i end up explaining to granny that had she not done/said/ignored x, we wouldn't now be at y.

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