DS appears autistic at home but is much better on holiday away from his obsessions - advice?

[SpinningTops]

I’m fairly sure DS (6) is autistic. He’s on the waiting list for assessment. He has frequent meltdowns at home and is very difficult, I’d say slightly demand avoidant.

but we’ve come away on holiday and deliberately left the things he’s obsessed with at home (Lego, building toys etc). He’s been much more present, played well with his sister and generally not appeared very autistic (other than a bit of excited jumping and flapping).

This leaves me in a bit of a pickle because I’m not sure what to do when we go home, whether to remove his special interest to improve his happiness or not.

Are you measuring happiness from an NT viewpoint.

You say present, playing with sister and not appearing autistic but that's not the same as happy?

Or do you mean the meltdowns are about his special interests/caused by them.

My DS defo has ASD but on holiday it's so exciting/stimulating he wouldn't necessarily want his lego (aka fave thing ever). For my DS it's just because it's new so takes his attention there iyswim.

He definitely seems happier generally, laughing, playing, having a great time.
At home he gets really obsessed with building things, is easily frustrated and can’t pause or stop without meltdowns. He doesn’t want to leave the house so he can do more Lego.

Whilst here I feel I’ve got my happy boy of 2 years ago back.

I have child older than yours with autism. I remember the clincial pyschologist who assessed her said we needed to eatch carefully how she reacted to her special interests and some will drain her and some will be very positive for her. So maybe you need to limit some of his special interests.

If you’re on holiday he may also be masking more which will be the depriment of his mental health.

I'd say it's worth a shot. Remove it and see how it goes over the next few weeks/months.

If he seems happier, great. If not you can always give them back.

Is it possible he becomes a victim of his hyperfocus rather than actively enjoying it ? Like, he wants to stop the lego but can't ? Would it help to confine the lego to a specific time and place (like, at grandpa's on fridays from 4-6pm) ?

I think you have to be careful that he’s isn’t just masking - ie being on holiday and knowing what’s expected of him; and muddling through as he knows eventually he’s going to go home to his safe space.

Ds 12 and I are both autistic. We both have very specialist interests and they’re really important to us. It can be quite cruel to try and control a person with autism’s interests or to deny them that hyper focus as it’s relaxing to them- even if it doesn’t seem so to anyone else.

This is interesting as it does seem to drain him. But everything I see says special interests are so important so I shouldn’t restrict.
It seems a no brainer that if something makes him upset and miserable I should remove it but also Lego seems like such a good toy and wouldn’t normally warrant controlling.

Yes, saying it out loud it does sound cruel that I think it might be worth controlling.

It’s difficult to know what to do but I do appreciate your input as an autistic person, useful to know that he may be calmed by it even if it doesn’t appear so on the outside.

He does actually sometimes say ‘I want to stop but I can’t’ Or ‘I want to sleep but I have to finish’.

My child has this with reading, she reads until she is mentally and physically exhausted.

For us what works in drip feeding new books from the current series she is hyper focused on but she has access to other new books as well as all her existing books. So she can still read whenever she wants but not the things which drain her.

I’d put an upside down plastic box over it and tell him that that will keep it safe while he has a rest. If he’s 6, I’d tell him the Lego is also resting.

Some of my autistic daughter’s special interests have been damaging. She’s obsessed about improving her looks to the point of dysmorphia which has resulted in anorexia and in a need to buy expensive body treatments that could be dangerous for her.
I don’t think it’s wrong to have a brain that can focus in on something intensely - it definitely has its benefits and a healthy special interest can help someone to find purpose and to regulate, but it can also be draining for the person and not necessarily the most healthy choice.
I guess your holiday experience is telling you that your son needs some distraction from his interests. It’s hard though as you know that he associates home with these.

All very useful, thanks. I’ll have to think about how we can manage it better when home.
He probably needs help but timers make him really stressed. He’s very all or nothing which makes it difficult to say an hour a day or something.

He might be more relaxed because you don’t have quite so many deadlines on holiday - no rushing to get dressed, eat breakfast, get shoes on, set off for school…. And so it goes on. What I mean is that I think it could be the effect of the holiday as much as whether he’s with his toys or not.

You say he was happy two years ago. Was this before he started school? So are the obsessions essential for him to wind down after a day of masking at school?

Yes, good point. I am wondering this too.

This sounds more like OCD to me.

He’s not winding down if they’re making him tense and unhappy.

It sounds far more like OCD than ASD. Defined onset, compulsions. He’s happier because he’s away from the source of his obsession and cannot carry out the compulsion.

I have OCD (diagnosed by NHS psychiatrist), mine also started when I began school. It then stepped up a level when I started secondary.

My compulsions also hinge around completing tasks at home. I’m currently on holiday and much happier because I can’t do them.

Yes, it all ramped up when he started school. I got the referral in during reception.

I think he does mask at school. Sometimes I ask whether he’d shout and scream at school like he does at home and he says no because it would be embarrassing (we have these conversations when calm, not mid meltdown).

He’s very clever which I think can hide the signs at his age and reception teacher said no signs, now in Y1 the teacher is seeing signs but I still don’t think it’s a patch on what we get at home.

I don’t think it’s OCD even though I make it sound like it might be.

i think it might be more due to perfectionism and his expectations of what he sets out to achieve.

There are other signs of autism which is why I think it’s probably more likely due to autism.

But I will look into it as maybe some strategies for OCD might help.

Ocd often appears as perfectionism, or rather perfectionists are more likely to develop it. OCD also causes rages, particularly if the compulsion isn’t completed properly or the chain of events is broken. Honestly - have a look into it. He needs some very complex untangling before jumping into an autism diagnosis from the sound of it.

My autistic daughter is at her best on holiday - as long as we go somewhere with a swimming pool. She is so much more regulated all the time, and some water slides help even more.

We usually go all inclusive and that means she can sort her own food and snacks out exactly the way she likes them, so that helps even more, and her difficulties are just not so apparent at all when we are away (once we’ve got the airport stress out of the way that is)

Have you taken any other factors into account apart from being away from special interests?! It seems like quite a leap when you have so many other variables to consider.

This is all very true, there are many different factors. No school, no clubs (his sister has quite a busy extra curricular life), beautiful sunny weather, lots of distractions. It’s not only that’s there’s no Lego.

We head home today, which he’s really sad about, and I’m sad too because sometimes I feel I don’t do a good job of keeping him happy.

It sounds like at home he’s reacting to an environment that doesn’t work for him, more than anything else tbh. I’d want to put in boundaries around any obsessive behaviour, even if it is as seemingly harmless as Lego.

The need to complete a task is very much an austic trait.