No longer managing public outings with my autistic child

[OhMyCherryPies]

What do you do if you can no longer manage to take your autistic child out anymore? My child is 15 but she’s always been hard work but she has got harder as she’s got older, she is aggressive, runs off, no danger awareness, but a new thing shes started doing is just screaming at the top of her voice, doesn’t matter where we are. She will just start screaming.

Yesterday we had to get off the train as she was running up and down a packed carriage screaming her head off. Shes too fast for me now and I struggle to stop her or keep up with her, I have two teenage sons (though younger) who help me with her but it’s not fair on them either and they both get very upset when she’s acting like that (one is autistic himself so he gets very upset at the unwanted attention) we had to get off the train in an area I didn’t even know and wait till she had calmed down before we could get on the next one in the pouring rain (nothing had happened to cause the outbursts), it was horrible as she kept attempting to run off. I just feel like I’m not able to manage her outside on my own anymore and dont know what to do, is there medication to help her to be more calm? Someone suggested reins for her but I don’t think that would be suitable for a 15 year old and I think we’d probably attract a lot of negative attention walking a 15 year old on reins. Theres got to be medication to help her? I went to the drs but they didnt help much.

I’d phone up social services in the morning and self refer and tell them you’re at the end of your tether and you need some support.

you owe it to you and your sons as much as your daughter as it’s affecting everyone now and must be so upsetting.

Ask them to come and do an urgent assessment and mention the word safeguarding and make sure you tell them you have 2 other children and they SHOULD make you a priority.

I hope they can help you with a plan of action.

If the LA say she isn’t safe with 2:1 carers you absolutely need to get an urgent call into social services. What a crazy situation them saying that then leaving you with no support. My heart goes out to you.

It’s not the LA saying it it’s the company they arranged to take her out, they won’t give it to me in writing either as I asked for it and they said they can’t contact the LA themselves and I have to even though the LA arranged them 🤦‍♀️

my boys are 14 and 12

It can upset other children or grown ups with disablities.
I think it's too easy to say don't think about other people.

So dismissive of what carers go through. The autistic person is not the only one who matters.

My son is autistic and 3 years old. We are already hugely struggling taking him out anywhere. He wants to go but inevitably gets distressed and needs restraining. Even at age 3 we are finding this hard to do as he is so strong and he is also now faster at running than we are! Things I fear will only get worse. I do feel for you though. We are trying to do the right thing by taking them out as they want to but it’s so much harder than people realise. I had to take my son to the hospital last week and it was hell. He had to be there but obviously couldn’t cope in that environment and everyone was staring which made it worse for him. When he needed to be anesthetized it took six of us to hold him down. The future scares me greatly. I wish there was more understanding and more support for families like ours.

Would the LA carers be able to keep her safe at home rather than take her out?

Just whilst you battle for meds. It might let you get out for and hour ince a week with your other children.

Also not the solution you want but do your other children have access to young carers stuff.

I fully appreciate the fear of social services, but they might be able to help get a referral into cahms who would prescribed meds in my area.

It may well do and that’s a shame, but OP shouldn’t worry about the opinions of judgemental assholes who have no idea what living with a disability is like.

The problem is we don't know the build.up etc so it can be hard to advise.

It may be a situation where medication helps but as she is autistic it may well also be environmental and need to learn different coping strategies etc....

What is the reason she isn't in school is there no suitable school? If not what are the L.A doing to support her education?

Another here who thinks disability social.servoces.might be the route to go for help.and advice and maybe support although it may take persistence as like all other services they are short of funding.

More short term
It sounds like she was overwhelmed on the train and possibly by change in routine.
In future are options like taxis/ Uber viable? They may be better as less sensory stimulation.

Will she use headphones and listen to music/ podcast/ audio book to help her stay regulated?

Did you try breaking the outing down into chunks so she understood each step and what order it would happen in?

I realise I may well be suggesting things you already do but sometimes it is worth revisiting.

I'm sorry the carers quit but if this was supplied by the L.A then they should have replaced them or looked at alternatives have you revisited that?
Even if they came to the home so you could take your other children out sometimes it would remove pressure from her and you.

You could ask G.P for an O.T referral they might be able.to help look at sensory needs and make suggestions (again very area independent).

I know you said medication but I suspect this may have to come via the CAMHS route. Speak to your G.P and see if they will refer you? Might be worth seeing if your area has a specific subsection of CAMHS that deals with learning disabilities and see if you are eligible for that.

I am a carer (two teen boys with complex and different needs). We have had to accept that our life right now is small, we can't do whole family trips as meeting everyone's needs is almost impossible. We have had to radically adjust how we go about daily life so that nobody - included the most complex person - is not put in distressing environments. If OP's child had a physical disability and was in a wheelchair, nobody would be suggesting continuing to take her to places with stairs and no lifts and giving her coping strategies or medication for the distress of being left at the entrance.

The real life options are:

1. Make the experience less distressing for her - find out what is causing the dysregulation and then accommodate her needs properly
2. Don't go at all - accept it is impossible to do whole family trips without harming one or all of the children
3. Find respite care for her or for her brothers: there are charities and resources out there for siblings etc but you have to be proactive to find and fight for them.
4. Do things separately, split your time and call in help from friends and relatives

The OP needs to put a self referral to Family Services - it takes a Google of the local authority's referral process, and some time completing forms, then chasing.

Regarding carers assessments, schooling, etc - this needs to be officially escalated. If the LA has stated that she qualifies for respite or carers, then the company they outsource to has to provide it. If they can't, you escalate.

I am wondering if she would be calmer if she had the option of retreating into her own familiar space during train journeys. Obviously that is hard to provide because you are on a train....but perhaps there is a portable option that might help? I'm thinking about something where she could put her face into a "safe space" and zone out the rest of the world - something like a oversized hoodie and vr headset, or a small area with walls and a roof that she could open on the table in front of her but which is self-contained and she has complete control over (perhaps some kind of zip-fronted bag where the bag could stand up and the front flap zip down in front, maybe with fabric sides sewn in that tuck into the bag when it is closed? Or a Cyclus pangolin bag: Armadillo-Shelled Recycled Rubber Backpack | Designs & Ideas on Dornob). Or if physically being in the train herself is worse than being near the other people etc, maybe she could have a light fleece blanket from home to cover the seat in and wrap around herself so that she is personally in contact with a safe environment rather than a random/dirty/communal one.

I am autistic and used to be allowed to take a small shoulderbag to school which I filled with a mini-world, it was good to know it was there even if I couldn't actually open it in lessons etc as it allowed me to touch base with a safe place that was entirely in my control for a bit of respite (like holding the wall briefly between swimming lanes).

She had two workers from the LA they said she isn’t safe even with 2 members of staff and that won’t change. They weren’t able to provide 3:1.

If that company can’t provide the support (I think it is the provision put in place as alternative provision rather than via social care?) required, you need to go back to the LA. It is the LA’s responsibility. You don’t need the company to put it in writing. You can put it in writing.

I would put her on reins it is the consequence of running off.
The consequence of screaming is she doesnt get to go places that may require pubkic transport.
She cant have been doing that at school if they are saying mainstream?

My oldest has asd and yes trips by bus etc were awful when mine were young. Once going back home on packed commuter bus where we had to sit separately

What the gov are missing out is that the awful situation in schools and own homes is meaning many wont be able to work (parents and kid) when they may have been able to.

Would she listen to music on a device? Could you get something like melatonin ?
Adhd meds can make asd symptoms worse.
Would gp prescribe any anti anxiety meds?

Gosh, how dreadful, this must be really hard. A few thoughts and ignore if not helpful.
Can you minimise trips out, or go in a car?
Can you go back to the GP and ask for medication.
Is there someone else who can care for her so your boys get some normality with you?
If she runs off, what happens? Is she unsafe, would she run in front of cars, or could you allow her to run off?
Is there any specialist school provision for her?
Could you explain to her why the council people wouldn’t come any more - does she have the mental understanding for that?

My child runs of like this but is much younger so still just about possible to pick up and carry if needed. I have no idea if this will be helpful but I saw a documentary recently where a mother was taking an older teenager out and had a belt that attached her to her child presumably to stop them running into the road. It was more age appropriate than reins but still did the same job.

I think when people think of reins, they think of the type used for toddlers, but you can get them for older DC and adults. Walking reins for older DC/adults with additional needs are often called harnesses.

You must be so exhausted, op

I think, kindly, its time to go nuclear 🥺

She is only getting older and stronger and you need all the support you can get

I know you don't want to but social services are there to help but wont if they think youre coping fine

You're a bloody good mother ❤️

I was also taken aback by your post to be honest.

Effectively you’re saying the OP and her other children need to be housebound and you said it without any kindness or sympathy; you said it as if it was the obvious and the OP was behaving unreasonably in leaving the house occasionally.

It sounds like you have done everything possible for your DD but as she gets older and harder to manage she might need residential care.

What are they suggesting?? Mainstream school?
I think you should get an emergency meeting with the LEA and tell them that you cannot manage. Even if it's a placement that you cannot get her to attend, you need her in the system, because you are otherwise left to do it and they won't care. She needs to be more than just your responsibility

How can .mainstream be appropriate with her level of needs. Maybe try your MP?

Quite many live with disablities and don't need or can handle a feral autistic teenager blowing them over in public space.
Consideration towards other people is a thing.

I’m just trying to get a thorough understanding of the situation here so please excuse me if my questions sound insensitive.

The LA have found her fit for mainstream (but you disagree) so presumably your DD doesn’t have an associated learning disability or significant cognitive disability?

If that’s the case, then presumably she’s fine(ish) - until she’s not. Have you identified what the root cause was? And what strategies do you have that help her? Did you manage to talk about it with her later?

I think there’s lots of well-meaning comments on here but if your DD is on the cusp of mainstream then the more extreme measures such as a buggy, reins etc probably wouldn’t be appropriate.

Re medication - there’s nothing that can medicate a person to not be autistic. There just isn’t anything that is available. Theres ADHD meds if she ends up being diagnosed with that too, but they’re not suitable for everyone and tend to help more with focus and concentration - they don’t really do much for meltdowns. General anxiety meds are an option if your GP is willing to prescribe them but again, they’ll take the edge off generalised anxiety but won’t do much for acute meltdowns. You could ask for betablockers - you take those before a stressful situation which might help a bit? Is your DD sleeping ok? If not, you can ask your GP to prescribe melatonin- even though you don’t have an ADHD diagnosis they can prescribe because you have a diagnosis of autism.

I echo PP - you need to refer back to family/disability services. You aren’t going to get your other children taken off you. Quite aside from the fact there’s simply not the resources to do that other than in dire situations, it’s perfectly understandable that you’re finding it hard. Because it IS hard.

The LA appeal process is shockingly slow. Anyone who isn’t familiar with the system has no idea how draconian it is. Does she have an EHCP?

I also think you need to forget about the reactions of people around you. People will always be judgemental. Some of them anyway. The recent increase in rhetoric around neurodivergence being an excuse for poor parenting really isn’t helping. Strangers on a train or a shop etc - their opinions don’t matter. I know it’s mortifying but you’re doing the best you can in those circumstances. Don’t waste your energy on things you can’t influence - you’re juggling enough.

For context, I’m AuDHD myself and I have 16 yr old twins, both of whom are autistic, DD is also ADHD. My two won’t ever live independently- DS is still in nappies. I was also the SEN governor for 5+ years so believe when I say I really understand how it feels. And the worst part is that it’s the constant fighting to get the tiniest amount of help - which then almost never pans out as it should.

It’s exhausting and frustrating.

I would say you need to:

*Talk to the GP about possible meds
*Expedite your appeal
*Make sure your DD is eating and sleeping well
*Refer back to family/disability services
*Identify her clear triggers (have you tried a diary?)
*Have strategies in place - eg/on the train if she starts to get anxious, you get off at the next stop no matter where you are so you remove yourselves from the situation before it escalates
*Make sure you have a clear idea of what her warning signs are so you can spot anxiety in the early stages before it becomes severe
*Talk to Young Carers for your two DS
*Talk to your DD when she’s calm to see if you can come up with a plan together that she is willing to try - what soothes her at home? Can it be adapted for being out?

It’s hard when you’re in the trenches - everything needs fight and it can be so draining. Huge sympathy OP.

I never said she couldn’t be considerate but her own disabled child is her priority and takes precedence, so when her daughter is screaming and they are both stressed no she should not worry about what anyone else thinks. Is that okay for you or do you still not get my point? Jesus.

There's a lot of missing information here. If the LA is saying mainstream she doesn't have any learning disabilities I assume? In which case can you not ask her when she's calm what's up with the screaming and running? If there's anything she thinks would help? If she has any idea what triggers it?

What do the professional reports say?

The LA will concede if they are trying to say mainstream but carers can't manage a 2:1 and if professional reports say specialist. There's zero point them taking that to tribunal.