Should we be encouraging (forcing) possibly autistic son to leave the house for family fun?

[PotatoesLogsEggs]

Son is 6 and on the waiting list for an autism assessment. We like to do things on a weekend, DH WFH and has been cooped up inside all week. We also have a daughter who deserves trips out.

The problem is our son really protests to going out and he can find it tough. We only do family friendly things, today we’re going to a train museum. We’ve talked through it, done a visual timetable, packed him a bag of snacks, ear defenders, fidgets etc and he’s now on board with coming.

So our trouble is, he finds it tough, he’s telling us he finds it tough. Do we ‘give in’ and live the life of hermits or try build him up to doing gentle activities for the sake of family sanity?

As someone who works with families this is the kind of thing I'm hearing increasingly from parents of autistic children recently. I never used to hear this complaint ever, (although it isn't to say it wasn't sometimes an issue, maybe people just didn't admit it so readily). Another is not being able to celebrate other family members birthdays etc because the autistic child doesn't like it but doesn't want to be left out going somewhere else. Same witb holidays. But the strange thing to me is that the parents are tolerating it. Not celebrating their own birthdays and cancelling holidays the other child/children were looking forward to going on. For the siblings sake, this is not ok. If it causes a severe meltdown, so be it imo.

In my experience - some parents haven’t been on holiday for years. If there are two parents then maybe there can’t be “family” holidays, but the sibling can have a holiday with one sibling. And things do change over time, and there is hope for the future. But right now do what is best for your family, and don’t make things harder for yourself by trying to conform to what is “normal”.

We mostly saved outings for bank holiday weekends or school breaks. Your son has been in school all week around people. That is exhausting. Weekends are a chance to decompress.

dd and I are both autistic so both need that downtime. Her probably more than me because I’m able to wfh and she has to go out in the world. Sometimes she is counting down the days until the next day off school and tells me that she wants no plans.

parents are doing the best they can! I am lucky I only have one child so don’t need to worry about siblings. As much as I am all for giving him experiences and pushing him to a point I know his limits and I’m not going to make things hard for us both by forcing a situation he wouldn’t cope with. That’s not fair on anyone.

You need to be really, really careful. My autistic child hit burnout in Year 6 and it is bloody scary. Worth avoiding if you possibly can.

We also have two kids, and the balance we have found is that we give DS (now 12) one "pyjama day" per weekend (either day), where the expectation is that he is at home, able to read/draw/play piano/play on his switch etc as he chooses, with fairly low-key meals and lots of flexibility. On the same day, DD has swimming lessons, often goes to parties, might go to a friend's for a playdate or to a cafe with one of us for hot chocolate etc. He isn't usually in PJs all day, but it's a shorthand for low-demand days.

On the second day, we'll normally do something together, but it needs to be something that isn't going to drain him. We live in London and he can now do museums, tube journeys, theatres etc, as long as he has either had the "pyjama day" or knows he can have it the next day. The trips can be more adventurous now than they were last year, or the year before, because he knows and trusts that we will accommodate his needs which in turn means he feels able to be braver. It's also made our relationship really warm and close - he sees us as his best allies.

Frankly, I find the "he'd better get used to it" attitude really ableist and offensive. If a child had a physical disability, you would scaffold them towards greater independence and gaining skills, but you wouldn't drop them into situations that exacerbated that disability and expect them to thrive. It#s only one example, but the family I know best who have taken that approach have a son who has become very aggressive at a young age, having shown no signs of it when he was younger, and I can see a corrolation between the episodes of violence and their families' demands on him. Autistic overwhelm is so complex to understand and accommodate.

This is kind of what we’re struggling with. We’re not tolerating it. We’re kind, understanding and do our best to help him but ultimately we’re not letting him be in charge of the family.

The options today were 1. Come with us or 2. Stay with grandparents.

Yesterday we were very much at home (and 3 of us were climbing the walls by the end of the day!).

He did actually cope pretty well with the day, a couple of times we had to help him, and we managed to distract and find ways to get him through it. He enjoyed cake and a playground, other bits less so. If I ask him this evening he’ll say he had a great day!

He actually does really struggle with his sisters birthday but it would never cross our minds to tone down the celebrations. What we tend to do is get him a little but complicated Lego set which distracts him sufficiently.

The other difficult thing is we don’t even know if he is autistic. I strongly suspect he is, and I guess we should parent to his needs whether he is or isn’t but I’m very much trying to make him into a well rounded boy. He is very very clever, he wouldn’t meet the requirements for a SEN school in the future so I feel we have to build up his abilities.

I’ve listened to Temple Grandin audiobooks in the past and one thing that struck me was how she said was to push them within reason otherwise they may never find their strengths and passions. On the other hand we don’t want to push him to burn out (which we’re not).

I think from the sound of things our approach is probably OK for now. Push him to a certain extent, on occasion, but be mindful and try plan things he will cope with and be gentle and kind to everyone when it goes wrong / ends in meltdown!

If you have multiple children, I think it is completely fair to say he can join or he can stay home but he can not stop you taking the other child to something fun.

Being autistic, we have to balance our needs for downtime with our desires for experiences. This is a skill he is going to need to learn.

one thing you can do is make sure that the activity is followed by scheduled downtime. Do things on a Saturday and have Sunday be at home. Do something in the morning and the afternoon is a chance to just chill. Have that recovery time planned in and talked about in advance.

"He is very very clever, he wouldn’t meet the requirements for a SEN school in the future"

There are SEN schools for autistic children who are very academically able - my child is. They are much less common but your future choices are not confined to (1) overwhelming but academic mainstream; or (2) academically inadequate but nurturing specialist. Until Year 5, my child was flying academically and didn't even need an EHCP, and then burnout hit and he almost fell out of education altogether.

Now he's in a brilliant tiny specialist for academically able autistic kids, many of whom have previously been school refusers.

He is very very clever, he wouldn’t meet the requirements for a SEN school in the future so I feel we have to build up his abilities.

Absolute rubbish. There are SEN schools suitable for those who are academically gifted. Often those children need the right sensory environment for them to reach their potential. My child is at one.

I think you need to educate yourself about the reality of having a SEN child in school as well looking after them outside of it.

We offer our autistic child 'down time' in the car, away from people/situation with device and headphones if we go out for the day to prevent overwhelm and help to regulate. Works well for us.
He is usually ready to rejoin after 30 mins or so...

If he can verbalise that he finds things tricky, I think that you should have the conversation with him (on a day you aren’t going out) and try and see whether he will write a list of 10 “safe” days out which he always feels ok with.

If he finds school difficult I’d predominantly try and do home days and safe days at weekends, and leave bigger trips for holidays once he has had a day or two to compress.

Have you tried giving him an option of a few different activities and then he chooses one? Or planning what is happening on the weekend early in the week so it’s on the visual schedule for the whole week for him to see. If you drive somewhere can you give him the option of going back to the car for breaks if it’s too much. Has he said if there’s a specific thing that bothers him?

DS1 in now an adult. Before he was diagnosed we used to force - sometimes carried kicking and screaming to the car to get him into school - when he was there his anxiety shifted into selective mutism. Then we did now and next but his anxiety was off the scale.

When his SS placement failed he had OT and mental health workers accompany him to the local shop etc. If we could get him downstairs he would become passive and comply but it never resulted in being more able to tolerate. Then Covid meant they no longer visited.

DS1 was housebound for years until we started visiting a secure dog field that guarantees no social contact.

It’s the possibility of social encounters/interaction that keeps him trapped in the house.

As all social encounters are overwhelming leading to meltdown to avoid them or shut down to cope when they have been unavoidable he has never been in a position to learn coping mechanisms.

So garden and dog field it is. Trying to encourage him to leave his safe (not comfort) zone lead to severe anxiety, depression and suicidal behaviour which was at its worse when OT and MH youth teams were involved.

Pre-school he externalised his stress and was thought to be naughty in social situations but somewhere along the line he switched to internalising in school and letting it all out at home. Maybe earlier diagnosis and support in school would have helped. Maybe not.

I do believe that nothing useful can be learned when overwhelmed and bombarded by powerful stress hormones.

None that I’m aware of in my local area. We have units attached to mainstream schools but our local authority will do their absolute utmost to put children in mainstream schools.

I feel I am educated in this area. I have an autistic family member who spent their whole primary years with a full time 1:1. When it came to secondary they were put in the local state school with no 1:1 support. They had to really fight to get him into an SEN school and his needs are extreme. Another neighbour has also had a huge fight going to tribunal about her child who also has more obvious needs than my son.

I’m not saying things won’t change as he gets older but knowing my LA I haven’t a chance of him going to a SEN school as it stands.

That’s a good idea. He’s getting good / I’ve become good at finding ways of getting him to tell me how he finds things (usually in a very roundabout way).
I’ll definitely give that a go.

Great, good luck!

If he finds a general chat tricky, something I’ve done in the past for this sort of thing is to put options on pieces of card and ask him to rank them.

Specialist provision is very much a postcode lottery. When ds was ready to transition (he has an ehcp which is very clear on full time 1-1) I looked at all local options and within 40 mins we had one specialist setting that could offer a decent academic range. It was an independent so to get him in would have been a massive fight and I didn’t feel it was right for him in other ways.

Thankfully he has done very well in our local (small, supportive) mainstream school and is in year 11 with an amazing 1-1 and support package in place. But it’s not been easy. He will be going to a specialist provision in September because he couldn’t do mainstram post 16

How is he on the day before you go? I know you say he doesn’t want to go , but does he actually get upset /refuses to get dressed/cries etc.?does that also happen when you mention the outing? Also how do you phrase it when you tell him you’re going out? How is he at the end of the day when it’s time to go home?

Honestly, my advice is yes. Once you establish a pattern of dc (nd or otherwise) calling the shots it will never be broken. Until my dd (autism diagnosis at age 2) was old enough to be left alone she did what we did end of. I obviously was aware of certain things she found particularly challenging so we modified lives to accommodate but we were not hermits! She would never have left the house if i hadn’t insisted

My boy finds it tough in the weekends as he just wants to stay in on screens. But I find he has less meltdownds if we tire him out. So I force him out. He is 7 with a younger sister and brother. We do try to things he will enjoy like climbing and running about.
I think sometimes you need to do the work early to prepare them for adult life. Eg sometimes you need to leave the house to get x done even when you don’t want to.

He kind of cowers and groans on us telling him we’re going. He tells us he just wants to stay home. Today was a better day than normally as we got him on board before leaving and he was ok once in the car. He’s been in a good mood since being home and I think the day out has been good for him. But if we’d gone with his wishes we wouldn’t have left the house.

He did reach the point when out where he’d had enough and asked to go home. We’d had a good time so we left shortly after. He was fine leaving today but often we have meltdowns on leaving places as he wants a keepsake / souvenir to remember the day - gift shops are his nemesis!!! We avoid them at all costs sometimes covering his eyes to escape places!!

@PotatoesLogsEggs He actually does really struggle with his sisters birthday but it would never cross our minds to tone down the celebrations. What we tend to do is get him a little but complicated Lego set which distracts him sufficiently.
What does hw struggle with about his sisters birthday? People being around or the focus not being on him? You buy him gifts on her birthday, do you buy her things on his?
I've seen the phrase 'glass child' on mn before, and I'd be wary of your dd being one and having to permanently restrict their life to keep a sibling happy.

@PotatoesLogsEggs I'm afraid if your DS is autistic, expecting him to become "well rounded" isn't realistic, it's not how autism works. He will likely always have a spiky profile of strengths and difficulties.

It sounds like he may have a PDA profile - which is more about anxiety than defiance. I recently saw this defined as "protective demand avoidance" which makes a lot of sense (including to me as an autistic adult!)

I'd highly recommend looking up some neurodivergent affirming resources on parenting PDA children. And before anyone jumps on it, no, neurodivergent affirming doesn't mean ND kids can behave badly, have no boundaries, always have life arranged exactly as they want it, or ban their younger siblings from going out! It's simply learning different strategies to support the child to regulate and cope with life that work for their neurotype because the parenting strategies for NT kids don't always work with ND kids.

Kristy Forbes, Sally Cat's PDA page, Steph's Two Girls, the Neurodivergent Nurse, NeuroBears and NeuroWild have some really good resources and some great courses for parents and kids.

My DS is autistic and at nearly 18, still struggles to leave the house. He would never have coped with a week at school and then a day out every weekend. That's a lot of being out.

As a family, we're happy at home anyway, but of course, we want to go out sometimes. Like your DS though, mine didn't want to miss out either, so he reluctantly came with us, but it was a struggle when we were out.

DS didn't really manage to go to secondary school, so we tried to get him to at least go for a walk at the weekend or in the evenings. He still needs days at home and I don't suppose that will ever change.

As PPs said, ask your DS for ideas of places he'd like to go, but let him have some weekends indoors too.

Ds is in his early twenties and loves going out. He goes to Jazz clubs, theatre football matches travels abroad with friends. He has autism but wasn't diagnosed at 7/8. I would also say he is quite academically bright, albeit with dyslexia ADHD etc.

At 6 he was full of energy to do running around, train travel, London Eye, Duck bus, anything with vehicles, playgrounds. What he couldn't cope with was museums, loud noisy large parties, pantomimes, sitting still for any length of time, playing with other children, ball games.

We really made an effort to tailor our family fun to his likes and dislikes and luckily he was quite energetic. But we didn't do half the stuff other people seemed to especially visits to people's houses...none.

Also school was quite low key and extremely near us 5 mins walk so I don't feel he was completely exhausted by a week at school or had problems with "transitions"...

But I do think a week at school takes it out of you and I was the one who used to feel no desire to go anywhere at weekends because I was so worn out by the week's school dramas homework uniform etc x 3 so I sympathise with your son's desire to veg out!!!

My advice is, go out but not all day and keep it simple. We also had some toileting issues to deal with that also limited us nor could we drive.

But he has turned out very well! And loves adventures and London. He has even taken to going to museums and the Proms