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.

I would suggest you need to put rules around special interests then stick to them rigidly eg you get one hour, don’t give in, hard at first but they adjust. Good luck. Dd thankfully was rocks and reading at that age

But if he doesn’t shout and scream at school, is that really masking or just appropriate behaviour for the setting?

Does he have much control over his home life? You mention his sister has a busy extra curricular schedule - does he have to trail along after her?

I will try and limit the Lego once home and see how it goes. I’ve mentioned this to him and he seems receptive. I think he realises how much happier he’s been away from it.

It’s difficult to say if he’s masking because I’m not there to see it. He tells me it’s too loud but he doesn’t want to wear ear defenders because others don’t. He tells me he feels the emotions but doesn’t let it out. I can see this as sometimes he’s screaming and crying about going to school, trying to run away but once he’s over the threshold he becomes calm and still. Then when he comes out he can be very grumpy and controlling and cross. To me that’s probably masking.

He’s not dragged around. There’s usually 2 of us around so one does one kid, one does the other. But I mean it’s all relaxed here with no time limits or needing to eat by a certain time. I’d say he has a normal amount of control for a 6 year old but he wants to be fully in control which isn’t always possibly. I always give choices if I can and try give him some feeling of control. Visual timetables help him a lot so he knows what’s coming.

Interesting. It's so tricky to get the balance right. That his school masking means he needs the Lego, but this thus feeds his obsession. And the newness and interest of holiday watersides, but that he wouldn't be able to maintain this holiday behaviour long term.

Okay, that makes sense. It sounds tough :(

I'd suggest helping him and you learn to regulate his use/interaction with special interests. Spotting those signs that somethings becoming draining or frustrating. You then can start to figure out a rough time and perhaps routine that works well. Obviously you know your child best, but with mine we discuss this together and I try to include him and his suggestions. Some work some don't. I also model it back to him. E.g mummies noticing she's feeling a bit overwhelmed or tired so she's going to have a break form gardening or stop for a snack. We also talk about the pressure of expectation. Wanting a drawing or lego design to be perfect and look exactly like it does in our head. How that's not possible all the time and what we can do about that frustration/dissapointment.

Managed in the right way our specials interests make our life worth living so I'd really be reluctant to take them away. Life is hard enough.

Hes on holiday. Hes got all his safe people and it sounds lovely.
When hes at home, he needs to self regulate more for whatever reason, but I think that it would be unfair to remove his lego at home.
I think that it shows that he might be moving out of the stage of it being an obsession, and next time you need a day out and hes resisting because of lego, then you will be able to remind him that on family times outside, he can have a great time doing other things too.

I dont agree with removing special interests. They pass and change eventually anyway, and removing his lego at home because he was happy and had fun on holiday without it, would look to me like a punishment for trying new things on holiday.

He needs to develop his self regulating skills and his ability to move on from one task to another. Theres nothing wrong with him playing lego, but he needs to be able to stop playing lego when its time to do something else, but feel safe that he can go back to it later when its lego time.

I do wonder if there’s a bit of pathologising going on here. You say his obsession with Lego indicates that he’s autistic, but frankly every child has some sort of obsession at some stage. That may be Lego, Barbie or PlayStation.

Of course autism is a real issue and affects some people severely, but I do think there’s an increasing tendency to assume that there must be a medical reason for every individual difference or quirk.

You say he’s been perfectly fine away from his Lego on holiday, which seems promising. If every DC with an obsession was diagnosed with autism, we’d have a 99% diagnosis rate.

i have re-read now. Im an autistic adult with 3 autistic kids who are all older teens and adults now and I also work in a SEN school (fwiw)

I think that on holiday, you are seeing him return to being a little kid with his family.
Hes clearly finding school extremely upsetting, but once hes in, he admits defeat and tolerates it. This is where the adults in the situation usually think theyve done the hard part and hes in and its ok. In my experience, its not. I would be seriously monitoring how he is on holiday away, off school at home, compared to school days etc.
Autistic meltdowns are what happens when an autistic person is completely overwhelmed by their feelings, their senses and go into fight or flight mode.

Hes choosing to build blocks because its meditative and self soothing to him when hes in a lot of situations that make him feel unsafe and out of control. Its something he CAN control. When the environment is right, he wont have them. Its not that he isnt autistic anymore. Its that his needs are being met.

It’s not just that he’s obsessed with Lego. There’s lots of other signs - unusual speech patterns, stimming etc.
At home if we go out he will usually have a huge meltdown which can involve an hour of screaming and hitting etc. but we’ve not had that here.

But if you’re autistic then you’re autistic all the time, not just when not on holiday. If he’s absolutely fine and not presenting as autistic on holiday then I would be hesitant of pushing an ASD diagnosis. All the things you listed can be symptoms of OCD.

I’ve just had thought about this. What happens at other school holidays? Is he at home and out and a out chilling or in childcare? I ask because I’m wondering if his regulation is better because their are fewer sensory and social demand in the school holidays.

I’ll rephrase it then to autistic but happy on holiday (we still get jumping and flapping, repetitive questions etc) vs autistic but unhappy at home.

The absence of meltdowns /bubbling build up that is what is making life much much easier.

Always at home during school holidays. We haven’t braved holiday clubs yet.

It’s difficult to remember how things usually go. I think often holidays start bad as he adjusts to the new routine, then a few days in it gets a bit easier. Winter holidays are harder with bad weather. In nice weather I try get them out more, getting him out is hard but once out he’s better.

Do you think there is something helping him with sensory regulation on holiday., that he isn't getting at home./school

Like the lego is a red herring and if he had legos on holiday it would actually not cause issues either?

So my son needs a certain amount of proprioceptive input to keep calm. It's pushing/pulling and lifting activities, sometimes called heavy work. With a bit of spin. This is much easier to achieve carrying a bag to a pool and swimming, than in a classroom.

One of my dc is autistic, high functioning. Environment is absolutely key to her stress levels. Out and about in busy places, noise cancelling headphones are essential. She can work part time from home but cannot cope in a work place. Being out in a quiet, outdoor place makes a huge difference.
I think stress levels are very important.

I am coming at this from an ADHD angle as I have certain activities that I do a lot more when I’m anxious or stressed (TikTok, reading, listening to music) so may be completely off, but I would imagine life is more stressful at home, so the repetitive special interests are also to self soothe, he won’t need to do that so much on holiday as he will be more relaxed and less stressed?

He becomes “calm and still” when over the threshold because he has gone into ‘freeze’ mode. His body knows there is no way out; it already tried fight/flight and that didn’t work. As he has been forced into an psychologically unsafe environment (for him) he knows there is no point fighting, trying to escape or change the situation so he just has to survive it.

You will witness the meltdown when he is later in a safe place with a safe person (presumably with you) as his brain will then try to recalibrate and release some of what he has been through.

Autistic people are autistic all the time. The behaviours OP is talking about though are signs of stress is an autistic person - if the stress is gone then you won’t see difficulties so it might seem less “obvious” to observers.

My autistic DD doesn’t “seem autistic” (so others like to tell me 🙄) at all when life is going well, when she has appropriate support in place at school/reduced timetable, she is able to regulate in her own way when she needs to, and we follow a low demand approach at home etc. As previously explained, she is also at her best on holiday (although we always stick the same kind of sun holiday set up, and it’s the time in the pool that seems to benefit her most, a city break is a slightly different story!)

But when something goes wrong and she is under more stress than she can cope with, then you will start to see some signs such as hand flapping and twirling. When things are difficult it build to full blown and terrifying meltdowns at home, that look as one might expect. But she is just as autistic on a good day as she is on a bad one.!

During periods of stress she will also return to special interests that she hasn’t been interested in for a long time, and start organising and collecting, and start repeatedly watching TV programmes that she liked when she was younger. It’s all variable.

OCD and Autism are very closely linked. Many people with one have the other, so that could be a high possibility if he does have Autism.

Maybe. It’s been a very active holiday by the sea, we’ve walked loads along cliff tops and beaches and generally been out the house from about 10-6 most days.

Yes, this is all probably true. I will say 80% of the time he is happy to go into school. This will fluctuate but overall he does like school.

Though there are probably aspects which make life harder at home. It’s difficult to identify these and school say he’s doing really well. I don’t think he can identify triggers at the moment so I feel there’s not much I can do to work with school to make it a better environment for him as not sure what changes could help.

My ASD DD sounds very similar to Frownings, the proprioceptive input is what genuinely relaxes her, she needs exercise and fresh air and to be using her body. She is sensory seeking, used to stim a lot before discovering proper exercise.

Things like reading, lego and screens are calming in an escapism way but don't get to the root of the discomfort. My DD would say they make you a dead kind of relaxed, when exercise makes you a calm, content kind of relaxed.

I'd focus more on getting him out and doing things outside when you get back, this will help and leave less time for Lego. You might find he enjoys it more if you've essentially regulated him beforehand. I think it's a bit like having a glass of wine to complement a good time, versus having wine because you need it. Help him find balance.

Autistic DS1 hated holidays. He enjoyed the abstract idea but the reality was all wrong - he hated the heat, the sand, the sea, the food, the bedding - basically everything - and had daily meltdowns. We stopped going in the end. The travel and the change in routine was too much - I returned home frazzled and he was exhausted. And had paid ££ for the privilege!

I would be questioning why a change in routine was not only accepted but led to a positive behaviour change. Not saying other issues don’t exist but this stands out.