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Family can't quite deal with son's obsessions!

14 replies

daisy5678 · 25/12/2007 19:52

J is obsessed with lights and music, so wanted to do 'shows' all day, in the dark, with all his new lights being turned on and off and his new CDs on at full volume. Family (parents + sister) haven't quite coped! He's been really good (for him) but I have tried to explain that he's not being naughty by flicking the switches - it's just an obsession and will only get worse if we keep talking about it!

Oh well - he's had a lovely day - hope you all have too.

OP posts:
aquariusmum · 26/12/2007 13:39

Totally know what you mean GMS! My family and in laws claim to understand, but are in denial really. Sometimes I feel I'm the only one facing his autism head on. My in-laws don't even ask about his school etc because they live in a world where "he'll be just fine in a couple of years!". My day wasn't great - to be honest, it is just more running around after DS for me and DH, while everyone else has a nice relaxing Xmas.

yurt1 · 27/12/2007 09:35

Are you sure its an obsession (under his control) and not a compulsion (not under his control)? Donna Williams gave me some really really useful help and advice on the difference, and on dealing with the difference. Unfortunately I seem to have mistakenly deleted her first consultation but can give you more info if you want. She defined an obsession as something like an Aspie obsession about dinosaurs, a compulsion as something like light flicking. She said to be careful about letting something like light flicking take over. (in our case it was to do with a calendar _ i had contacted her and asked whether I should just allow ds1 to indulge) If you're interested in I can find my hard copy of her consulation and type out the relevant paragraph.

daisy5678 · 27/12/2007 11:29

Yurt, that would be great. I had to really think about which if his are compulsions (I guess the switches and buttons are compulsions, as he really can't help himself) but the 'shows' are obsessions. Does that make sense?

OP posts:
mymatemax · 27/12/2007 19:44

I find the compulsions far harder to deal with, for ds2 his obsessions are things he discovers he enjoys, like sellotape or certain film these tend to naturally run their course & to a degree he can be distracted from them.
The compulsions he doesn't always get enjoyment from but are far more rigid & the longer they go on the worse they become as they are firmly part of his routine & are often the more dangerous of his behavours.
They are also the things that others find harder to understand.

Glad your ds enjoyed his Christmas x

yurt1 · 27/12/2007 20:20

ds1 has no obsessions, only compulsions. It's a far bigger problem than his autism or learning difficulties. His compulsions are massively more problematic than him being non-verbal.They prevent him walking down the street, going anywhere, doing anything. I loathe them - it;s the oen thing I would definitely medicate for- if something was guaranteed to reduce compulsions. Hang on will go and find that DW stuff....

yurt1 · 27/12/2007 20:40

OK- she starts by comparing the compulsions to addiction. So he gets a cocaine type rush form indulging in his compulsions- she talks about a low salicylate diet helping. We tried that and tbh it didn't seem to help him much.

I talked about preventing him from seeing through compulsions and his distress when I stop him seeing one through. She said " withdrawal from any addiction is never painless but nor is an addict enjoying themselves... compulsion isn't want but an an addict doesn't know that....'
I told her that I tend to limit compulsions so he's allowed to indulge a certain number of times then we stop them. she said 'important, as addictions only accumulate, compound and ultimately become a bigger trap than the 'autism' ever was' I then talked about compulsions sending him 'over' - she said that ' mania is not pleasure' .. and goes onto describe being stuck in mania and withdrawal. She has written a poem Pink Street light - which described it exactly to me.

She then talks about OCD- as being different from compulsions.

She then talks about stopping a compulsion by directing anger at the compulsion (not at ds1) and saying 'naughty lightswitch ds1 is in charge of the lightswitch the lightswitch isn;t in charge of ds1' etc - this has worked surprisingly well in the past.

She goes onto suggest some biomed stuff that I might try to get into him again (compulsions have got bad again recently). Couldn't get him to take the stuff before.

I asked whether we should tackle compulsions or leave them. She said they had to be tackled. She said 'the will progressively worsen, they are addiction driven in his case and h has identified with them and sided with them. They are vocarious and will take over progressively more territory, taking the family with them.... so no this is not the place to look at this as 'culture'... stims, obsessive interests, sensory fascinations...these are culture... but co-morbid mood, anxiety and compulsive disorders are condition... you don't sit back and guilt yourself into celebrating these or they may eat up ds1's life piece by piece.'

In another email she talked about how some people fit the autism 'culture' group- think stereotypical Aspie for what she means by that, others are far more 'condition' -driven by other probably underlying metabolic problems. She then distinguishes between writing about sensory and obsessional interests which are voluntary vs ds1's behaviour with is totally involuntary.

I'd really recommend her for consultations actually- she does it by email, is generous with her time, very cheap for the autism world (60 Australian dollars last time we did it) and has been spot on.

mymatemax · 27/12/2007 20:44

Oh yurt could I have a read too please. DS2's compulsions are by far the most disabling of all & seems to be the area that the least support is offered in.
He has a specialist CP physio, SALT & OT etc but the only advice offered for his compulsive behaviour is "you just have to try & nip it in the bud"

mymatemax · 27/12/2007 20:45

sorry X post

yurt1 · 27/12/2007 20:51

Have a look on her webpage as well - if you look at her autism section you'll find stuff about salicylates, rapid cycling bipolar and medication. I am actually going to ask about medication when we see the paed. She talks about tiny doses of risperdal (1/12 the usual dose) and tiny doses of Seroquel.

mymatemax · 27/12/2007 20:55

Yurt so much of that hits home for ds2, sometimes I can see him becoming more distressed because he can't break the compulsive behaviour, he gets no pleasure from it & gets stuck in a cycle of repetitive compulsive behaviour, for example he has to touch the stairs before we go out of the house but sometimes he gets stuck touching over & over & can't get past the stairs - he hates it. I think its part of the reason he hates going out.
It is very different to his obsessions which he loves & stim type behaviour like licking windows which again gives him pleasure.
If he's not actively choosing or getting enjoyment from it how do you reason with a 5 yr old to stop.

yurt1 · 27/12/2007 22:38

We use countdowns a lot-' last time ds1 then finished'. Then 'ok I'm counting down then you stop. 10, 9, 8' etc We also use that thing DW suggested about saying 'naughty step in control of X, X is in control of step, go away naughty step" and that works surprisingly. Our biggest problem is out and about, he wants to look through every window, press every bell, look through letterboxes, sniff front doors. At 8 he can drag me off and I can't stop him easily and he gets more frenzied. It's a bloody nightmare tbh. He gets no pleasure form it and if allowed to indulge then does what we call 'going over'- which is described wonderfully in pink streetlight. Fab poem.

mymatemax · 28/12/2007 19:00

Thanks yurt, i'll try the naughty stair tactic & see if he gets it. Most of his compulsions are built in to daily routine so we have had some success by not allowing him to become too rigid.

We have to be one step ahead, thinking about how we are going to do something as simple as getting in to the car or to buy a pint of milk just so he can't build in to it repetitive behaviours. Putting so much thought in to simple tasks is so controlling, ultimately I would love him to learn strategies he can put in place himself. Not sure if i'm dreaming though

One of the advantages of his CP is he tends to be in his mbuggy when out so we don't have the nightmare of him pulling in the opposite direction.
But i'm sure this will change as he gets older & wants to assert himself & not have us push him around, he can walk but is still wobbly.

yurt1 · 28/12/2007 19:29

I know what you mean about thinking ahead. It is exhausting.Everytime we go out, everytime we do anything we're playing ahead. It's what makes some visitors so echausting, they amble and don't think ahead and thenall hell breaks loose.

I'd be wary of naughty stair- he's not being naughty- the anger needs to be directed at the 'thing' that is controlling him- not him. so be angry at the lightswithc- naughty lightswitch. Oh hang on is that waht you meant.... is it the stairts being controlling? Don't do naughty step is what I mean.

mymatemax · 28/12/2007 19:54

No I wasn't going to go all supernanny on him but that is how my post read. Or maybe thats another tactic make him sit on it instead of touching it... I don't think we'd ever leave the house

I'm going to have a look at Donna Williams info .

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