Has anyone with an ASD child given up on taking them out?

[Diymesss]

Hi, lately I’ve been struggling taking my 7 year old son anywhere. His dad left and wanted to co-parent 50/50, so now have him and his little 3 year old sister half the week on my own.

He’s been diagnosed with ASD recently. Whenever I want to go out anywhere he starts shouting, hiding, running round the house trying to escape (yep school run is fun!). I try to take him out child friendly places like the park or a beach but he’ll often start saying he’s bored or getting angry about something after only ten minutes. Then trying to run off which is really tricky to manage as he is fast and I am not when trying to carry his little sister or push her in a buggy. He also has food allergies so I have to prepack a load of food as can’t guarantee there will be anything suitable to buy for him.

I have mostly been trying to go out because I thought it would be good for him and his little sister too. But it’s getting so stressful I think I might just give up and save money by staying at home/the garden, which he seems to prefer anyway! Are there any downsides for an ASD child to staying home all the time, if that is their happy space?

Child friendly places may not be ASD friendly for DS, they may well be overwhelming &/or a sensory nightmare for DS.

What is DS like with shorter trips out rather than several hours and to quiet places?

Have you considered using a SN buggy/wheelchair or reins? Does DS use noise cancelling headphones/ear defenders? Some people find sunglasses help.

Have you has social care assessments, and contact Home Start who may be able to support you getting out of the house?

How long has this been going on for? My ds(9) has sometimes gone through phases of not liking going out but they always passed after a while.

Thanks very much for answers. I have been wondering if noise and music might be an issue, also too many people about. But it’s hard to find places which are quiet and he is also interested in. He’s not much of a one for country walks as he dislikes mud and can have a bit of a meltdown if he has to walk though it!

I really can’t see him agreeing to wear reins tbh, I can imagine him doing something like plonking himself down and refusing to move! A buggy for him would also be out as his little sister often wants carrying or pushing in a buggy and I couldn’t manage two buggies on my own.

His ASD has been diagnosed as mild and so there have been no social care assessments. The school is supporting him with some extra tutoring but other than that we have been left to get on with it. The disliking going out has been going on for years now, but I’ve persisted as often (not always), he will seem to enjoy himself for at least a while once we get where we’re going. It can be amazing seeing his face light up with joy, but then it never seems to last that long till it’s back to the running away/being aggressive at me.

I’ll investigate Home Start, thank you 😊

We had a special needs buggy with a buggy board on. One or other child would go on the buggy board so I didn't have to carry either of them and only needed one pram. Ds was definitely using it at 7 still.

For ds a lot of planning needs to go into a trip. Visual timetables, a picture of where we're going, what is going to happen when we were there and just general verbal reminders of where we are going as we get places. Other things that help ds to transition for one place to another is distraction, for us it could be a video on my phone or the promise of an ice cream.

I second ear defenders/sunglasses etc even a hoodie or a baseball cap can help dampen sensory overload.

What about a buggy and buggy pod or a double buggy?

You can request social care assessments yourself, a carers assessment for you and an assessment via the disabled children’s team for DS. On their website Contact have model letters you can use.

You could also look at OT and SALT (which is about far more than the physical ability to speak).

The school should be providing more support. If school was easier for DS home life would improve.

Where does his face light up with joy? I would keep going to those places but find a way to make them work better/longer for him if possible. That might require going at times when it is very quiet, or going at advertised 'autism friendly' times, having sound cancelling headphones, playing with him while he is there - making up stories, joining in with what he is doing, encouraging him and telling him how well he is doing, setting him little challenges, timing him and seeing if he can beat his time etc. Maybe let him sit out and have a snack and a drink at set intervals and then encourage him back again with a new challenge.

When you get up in the morning tell him what is going to happen that day. Lots of warning before you go anywhere. Give him lots of time for any transitions, ie we're leaving in ten minutes/5 minutes/2 minutes so make sure you've finished what you're doing. I think it's great for him to spend a lot of time at home as he's so happy there, but I think completely cutting out going out would be negative. I would let him be at home after school and chill, but take him out once over the weekend. Lots of warnings that it's going to happen, lots of talk about what you and he can do there, going at a quiet time and lots of snacks to distract him with.

Have school put things in place to help him cope with the transition of arriving there and things to help him through the day?

Thanks all. The school has a special needs group before school which he goes to, but as it’s only run by one teacher it’s only on three days a week and sometimes is cancelled when they’re ill. He goes in much more willingly on the days it’s running. On the days it’s not on, he will get very angry and I have to walk/pull him into the classroom, which I don’t like having to do - but he won’t be persuaded.

I probably do need just to pick a handful of places and keep going to those, so they’re familiar. It can be a bit unpredictable how we’ll get on as sometimes if a lot of children are on play equipment he will get upset by that. I live in a touristy area so between spring to autumn there really are very few quiet places! Investigating the autism friendly cinema screenings I think is a good idea, as his little sister is just starting to be old enough for me to take them both.

If there's a local SEN group they might organise autism-friendly sessions. Googling 'facebook autism Diymesssarea' should find it.

The school should be looking at supporting transition the other 2 days and providing other support e.g. emotional literacy support, support with regulating emotions like Zones of Regulation, sensory circuits, sensory movement breaks. Would it help if DS was dropped off 5/10 mins early or late via a quieter entrance?

@FloatingBean that is a good idea about drop-offs. I will ask the SEN lead if they can let him go in a bit early on the days he doesn’t have the group before school

Hi op, we've had what I call 'episodes' where it becomes impossible to leave the house. With dd this manifests in sensory/ control issues that see her refuse to get dressed. That happens at the peak of her anxiety, and it's pretty miserable for the whole family. The main impact of staying home will be on you and your dd, who will miss out, so it's far from ideal. The split from his dad has created lots more transitions for him to deal with, so his behaviour sounds like you are his safe place. How are you managing thos transitions with his father to reduce that anxiety?

Also as others have said, needs not being met at school is a major issue. Dd (6) went through several weeks of school refusal lat term. In a way it was good because finally we were deemed to have reached 'crisis point' and support was more forthcoming. I spent 6 weeks one to one with her just to get her anxiety managed to the point where she'd done so well she went back to school, in her uniform. Last Friday a number of things happened at school which left her in tears (she reacts extremely badly to being told off/ criticised and there was an issue during PE). Since then her anxious behaviours have increased again, at home - tears, shouting, anything can tip her over the edge, she's built more rituals around herself again and is struggling more with getting dressed again. It's so obvious to us as parents but school continue to say 'fine at school'. We're now in the process of appealing against the LA's refusal to provide her with an ECH needs assessment. School have implemented some things, but we're trying to diarise the things we believe are triggers for her.

@Whatafustercluck sorry to hear you've been having difficult times with the school and leaving the house too. Hope your appeal goes well.

I'm not really sure how to manage the transitions. The pick up/drop off is kept very short as neither of us want to spend time with each other and his dad always has somewhere to rush off to, as he works in a different part of the country half the week.