Hand washing - help with transitions for ASD or OCD?

[usernamebore]

I am feeling a little lost and was hoping some of you wise people could help.
Our 12 year old was diagnosed with ASD in the summer after a brutal first year of secondary. He is now doing online schooling from home and doing much better with that side of things. Still a lot of anxiety etc, but nothing like what we were seeing.
One thing that is concerning me, however, is we are seeing more and more hand washing. It seems to be at points of transition - e.g. he washes his hands after reading his book and before playing on his nintendo, he washes before and after eating, before a lesson, before bed and even, if you can believe it, before he has a shower or a bath. If he has washed his hands before eating, for example, and then has to get up and open the fridge, I have noticed he will pull his sleeve down and open it with that covering his hand so he doesn't touch the fridge door. If he has washed his hands before bed, and is now in bed, he wont touch his books, but will touch his water glass....
While there is certainly some germaphobia going on, and a general strong dislike of dirt, I feel like it cant be that which makes him, for example, wash his hands before getting in the shower!
However, if this is OCD, and it is spreading (we are definitely seeing more of it now than we were a few months ago, and it only really started in the past 6-8 months I think), obviously my understanding is you need to be proactive to help stop it as it will just get worse and worse. But if it is is part of his ASD and helps him manage all these transitions (he says it feels nice (he likes the sensation of the water) and it helps him feel less stressed) then we would not want to do anything to stop it.
Can anyone offer any insights? I know OCD is often co-morbid with ASD but have no idea how you can separate the two and know what to target and what to leave. It doesn't help that we are unable to access therapy at present as he gets too anxious and has a meltdown every time we try as finds the pressure of the questioning and the 1 to 1 side of it overwhelming....
So we are feeling a bit lost....
Thank you!

I haven't got anything helpful to add unfortunately. I know a couple of kids like that, lurking here in the hope of some useful comments.

Sending strength to you in your struggle.

Have you considered a less direct form of therapy that relies less on verbal communication?

Is DS under any professionals? Does he have an EHCP?

We got rejected by CAHMS and when we tried to get an EHCP (and even when we tried to get an OT!). Apparently the LA thinks if you have ASD and are not actively suicidal, it is none of their concern...

He is not under any professionals at present, though a parent of a friend is an ASD specialist with 30 year's experience and has been talking with us and advising. We are doing a hell of a lot of reading and learning ourselves too.

The problem is, we have tried 4 different therapists and it has been disastrous each time as he just freezes, panics and cries. We do need help though, and know it, so are keeping trying to come up with ideas. It has been suggested that maybe we need to see a psychiatrist and that he needs meds to bring the anxiety down to a level he can access therapy, but I am reluctant having had bad experiences with SSRIs myself, and being conscious of how young he is. Plus he is happy and contented and not anxious when his is in an environment that does not stress him out, so feel like we dont need to take such a drastic step yet...

But it is hard.

Request another EHCNA and then appeal if the LA refuse.

Look at another CAMHS referral. And complain if they refuse on the basis DS has ASD. Antidepressants can be brilliant for some DC so I wouldn’t rule it out.

Thanks - I dont know, it all seems pretty pointless to fight, spend all that time and money, and then get put a multi-year waiting list and get barely any help at all... Our local authority (Hammersmith and Fulham) is notoriously bad with ASD in particular, so we dont hold out much hope.
Luckily we had some savings from trying to save up to buy a house, so are just burning through that paying for things privately for now.

But the main thing for us at present is this handwashing thing, and more generally, trying to work out where there are anxiety/OCD behaviours we want to try and work on, and where there are parts of the ASD which we want to accommodate. It just seems impossible to extricate one from the other and, accordingly, impossible to know what best to do other than keep fumbling along as best we can and going with our gut on a day by day basis.

Obviously it is up to you, but a good EHCP is absolutely worth it and can provide more support than the vast majority of parents can fund privately. It can include support that DC wouldn’t otherwise get, more frequently/for longer, and without the need to sit on the normal waiting lists. You may have to appeal, but imo is worth it. EHCPs can last until 25, or 26 in some cases.

We have a similar issue with DD7 who is currently awaiting ASD and ADHD assessments.

One of her anxieties is not being able to go to the toilet when out (though a private OT assessment actually suggested that this could be linked to her touch sensitivity - being hyper aware of bladder sensations when only a small amount of urine present) and so has rituals about how long she spends in the toilet before leaving, what order she has to do things in so using the toilet is the last thing, going to the toilet as soon as she arrives somewhere, etc.

She also has a habit of going to the toilet during transitions and this was a big thing at school, particularly in reception and year 1, though has lessened since.

She also has a particular ritual (possibly linked to touch again) whereby she has to scratch her feet before putting on shoes.

Also not sure what is possible ASD and what could be OCD. At the moment, we just accommodate and try and keep it relaxed and no big deal.

I did read somewhere that suggested the difference was that if the rituals provided comfort, it was ASD behaviour, whereas if they were a sense of anxiety (ie they didn't necessarily like doing them, but felt they had to), it was OCD.

@Sunnydays41 thank you - that is helpful, and I had heard similar advice. I am guilty of potentially making more of an issue of it (he says I give him "looks" when he goes to wash his hands which makes him feel bad - I probably do without realising as I am just worried because he keeps doing it!) but it is hard not to. I noticed today he washed his hands but then used his elbow to open the toilet door afterward, and he washed his hands before dessert at dinner...all of which seems to be new. But then he says it makes him happy, so who knows. He is certainly not stressed when he is doing it, he just seems like to.

He also used to go to the toilet a lot in primary school between lessons, but he would also drink water from his water bottle when he was stressed as a coping mechanism, so that was also a factor.

I guess my anxiety makes me imagine this spreading to a complete germaphobia/agoraphobia situation where he cant leave the house and wont touch anything etc. But we are seeing his stress and anxiety levels drop now we are doing online school from home, so hopefully once he feels more secure and has recovered from some of his burnout etc, he may also feel less need for these rituals.

I guess we will find out if we are doing the wrong or right thing at some point but, until then, we have to just keep on bumbling along...