ASD and fear of water on skin

[Julia2132009]

My ds, almost 5, gets freaked out by the feel of water on his skin. He seems hyper-sensitive to the feeling. Just wondered if anyone else has any experience of this? These are the main issues:

When he goes for a wee, he takes off all his clothes first and afterwards dries himself with the same number of a particular kind of ultra-absorbent, patterned kitchen towel. At the moment it must be 5 pieces, it was 2 for a few weeks and during one difficult period it had to be exactly 30! He claims to still feel wet unless he goes through all this palaver. This is a huge operation for him as he finds dressing himself difficult. It’s causing problems at school. Often he says he needs a different pair of trousers because they are wet, even though I check them and I can’t feel any wetness. Sometimes he tries not to drink to avoid needing to go. Sometimes even the offer of a drink can cause distress.

He is not having his hair washed as often as he should. It is so hard to persuade him into the shower or bath and washing his hair makes him scream and cry, but sometimes it gets so dirty I just have to do it anyway even though I feel guilty. I try to make baths as fun as possible with toys, bath crayons etc and I offer rewards. They don’t seem to be enough.

Getting out and about if difficult because of rain, but we are just about managing with full waterproof kit. Spills of drink and food can terrify him, although he is getting much better with this with lots of reassurance.
Sorry this has become so long. Thanks for reading.

Given the rituals he goes through to avoid it I think that this is (or has become) more of an OCD type behaviour than purely sensory. I don't know what to suggest, however, as he's pretty young. Is he able to articulate what his problem with the idea of feeling wet, is?

When I try and talk to him about it he just says its wet and he doesn't like it. He does have good speech, although it can be difficult for him to communicate how he feels. I tell him things like water will not hurt you, water can be easily dried or cleaned up. I've thought of offering rewards for keeping trousers on etc, but I I'm worried that if he really wanted the reward he might get stressed if he feels he can't do it. This all started when he began school in Sept, so it is stress related, and it gets worse when things are not going well at school. So far I've just been trying to help him feel comfortable again and keep him calm by giving him the tissues, clothes etc that he asks for, whilst being calm myself trying not make more of an issue about it.

My ds (now 11 with AS) does/did the same thing with insisting his trousers were wet after going to the toilet and we couldn't persuade him different, no matter what we said. He would also wake at night convinced he'd wet the bed and would insist on a complete pj change, even though they were completely dry.

When he was younger he couldn't stand getting his hair wet and there was no question of him having a shower or using one to was his hair, but would reluctantly have baths, although only once a week.

We later discovered he has OCD tendencies and the things he gets anxious about wax and wane.

He is much better now with water/showers on his skin and hair and I do think this started out as a sensory issue and then developed due to high anxiety levels. The trouser/pj thing also stopped as he became less anxious about water, but he now has a very real fear of being poisoned or contaminated by other people's germs if they are ill and this results in ritual handwashing and extreme panic if he feels he's been 'exposed'.

He can go a while without being too bad, but stress of any kind pushes him right back into it.

We tried to get a CAMHS referral via our GP, but CAMHS refused to see him, as they insisted it's all ASD related, but you might have more luck. It's worth a try anyway. I have since found out that we would be unlikely to get help anyway, as ds doesn't have rituals that take longer than an hour a day, so wouldn't qualify for an official diagnosis.

ASD and OCD go together more often than people think, here.

Thanks moosemama and ouryve. I'll start reading about OCD. Sorry about your ds's difficulties, moosemama, but it's really good to know my ds is not the only one. Yes I think I'll try for a CAMHS referral. He only got a diagnosis a couple of months ago, and when I asked the gp if there was any therapy or help he could be referred for (specifically regarding the water thing, anxiety, anger and other sensory stuff] she just said autism is a kind of personality so there isn't really anything we can do to treat it. I do think of his asd as part of who he is, but still ...

That's the problem Julia. There are lots of comorbids such as anxiety, tics, OCD etc that it can be quite difficult to get treatment for, as you are told it's all related to the ASD and therefore nothing can be done. If you do a bit of Googling and read some of Tony Attwood's stuff, you'll see that that just isn't true.

Because CAMHS is a mental health service and ASD itself isn't a mental health issue, they will very often refuse to see children that have an ASD diagnosis. Unfortunately, if you do get seen, you may find that as they're not ASD specialists, they can't actually help all that much anyway.

I have been wracking my brains to try and think of a really good website that another MNSN person (NoHaudin) linked me to when we were discussing my ds. She is the person to talk to about ASD and OCD together.

what temperature is the water? ds has to have it exactly right (tepid) as he is super sensative to temperature.

do the trousers feel cold when he puts them back on? the coldness may feel like wetness.

Thanks for your advice moosemama, and the name. I wonder if the anxiety and the rest could be diagnosed as secondary disorders then some help would follow. I see what you mean about CAMHS, though. Meanwhile I'll keep on with my reading and my own hit and miss attempts to make things better.

That's a good point about temperature, Susan. He is super sensitive and we have to be careful that food and bathwater etc are tepid. I could look into finding some different pants that had a warmer feel. Thanks.