Completely lost with autistic 12 year old DD

[glorious]

DD was diagnosed last summer after school and the therapist she was seeing for anxiety suggested she might be autistic.

Since then she has started year 7 and things only ever seem to get worse. I have given up work because the stress of a full-on job and dealing with disrupted sleep, frequent unpredictable meltdowns, continence issues, and trying to sort things out with school sent me into burnout (I'm neurotypical as far as I know so I just mean regular burnout).

I have read everything I can find, worked with school to implement every adjustment she has asked for (or that I thought might help), and tried to address sensory needs at home, plus changed her routine to give more decompression time. I have completely given up on her drinking/toilet schedule for the continence issues because it was just creating too much conflict. And I have given up on everything else that predictably causes meltdowns too. Offering choices just overwhelms her and leads to meltdowns in itself. I've kept a log of what has led to meltdowns and they are so unpredictable that it's not really helping. I think the real issue is the demands of school, particularly socially and the anxiety of 'getting things wrong' by accident, but she masks at school and it all comes out at home. And she is already at the school which is likely to be the best fit in the area.

She is getting more and more miserable. She says she hates her life. I feel like I can't say or do a single thing right and I am so tired of being screamed at every day. She cannot suggest anything that she thinks would help her. I've suggested going back to her therapist and she won't. I've suggested looking at alternative schools (or even online school) and she won't. I've suggested we do mindfulness / yoga to help with calming down when she gets home from school and she won't. It's like she thinks the only option is to come home and shout at me.

I am out of ideas. If you've been in a similar situation, are there any approaches or resources that helped you figure out how to make things better?

Is DD taking anything to help with sleep?

Has DD been referred to the continence service? This could be related to sensory issues. Has DD had a sensory OT assessment.

What support is the school providing? Does DD have an EHCP? Making school life easier will improve home life.

What about an indirect therapy that relies less on verbal communication and taps into DD’s interests? For example, animal-assisted therapy. Would DD be open to that? What does DD enjoy? Or if interests have dropped off, what did she like doing previously?

Thanks for your reply, I really appreciate it.

She's under a consultant for the continence issues and is on medication. She doesn't take anything for sleep and so far has also refused to consider that but I do agree it would be helpful to try if I could possibly persuade her because being tired is really negative for her and us. Maybe I'll have another go. Is the GP the best place to start for that if she agrees to try it?

She hasn't had a sensory OT assessment. I'm struggling to find OTs who offer that service locally - any ideas how I can find one?

She doesn't have an EHCP and is in private mainstream so I don't think it's possible/relevant. She has been at the school since year 2 for the small class sizes and quiet atmosphere (she is very distressed by loud/bad behaviour from other children). This definitely helps.

She has quite a long list of adjustments but the main ones are that she is able to eat lunch in a quiet private space rather than the loud lunch hall, she has a toilet pass, she can use fidgets in lessons, she is able to leave lessons and go to the SEN room or school nurses at any time including at lunch, she has regular meetings with a mentor, she gets extra time for tests, she does all her work on a laptop (she also has dysgraphia), and she wears ear defenders.

Her previous therapist was art based. She would love animal therapy but again I can't find anything in the area. I think we'd have to go to London which brings its own challenges but perhaps I'll look into it (we are about an hour and a half away).

Honestly she doesn't seem to enjoy much at the moment but she does love animals and she used to love reading.

Sorry, I feel like I'm being a bit negative but I really don't mean to . I just feel very stuck 😥.

If the consultant is a general paed rather than just a continence specialist, speak to them about sleep medication. Most GPs won’t prescribe medication for sleep. If the current consultant and GP won’t, ask for a referral to CAMHS, paeds or a sleep clinic (which of the first 2 who will see DD about sleep will depend on where you are. In some areas, sleep clinics have longer waiting lists than the first 2 and in other areas, it is the other way round.).

You can search for an OT here. Though some are more qualified than others. If you post where you are, someone may have a suggestion of an OT and animal-assisted therapy. In some ICBs, sensory OT is commissioned on the NHS. Animal-assisted therapy (either animals in general or more specific like equine assisted therapy) can be a brilliant way in. Also look at care farms.

EHCPs can still be relevant in the independent sector. Personally, I would make the request. Despite the school making some adjustments, it isn’t enough. If you are thinking about requesting an EHCNA, make sure whatever OT you use has experience of writing reports for SENDIST.

Has DD had an assessment by an educational psychologist?

Both my dcs recent experience sound very similar to your dd's. They also were at a lovely, quiet independent school, had pretty much the same arrangements as your dd but were absolutely unhappy and just couldn't face going to school. Does your dd want to go to school? You said you offered looking at online schools, but she wasn't interested. For both my kids, online school worked really well. My ds has his own pet dogs with him all day during the lessons (and so have many others in his class, so there is a lot of introducing pets to each other going on) and for the first time in life is happy, relaxed and enjoys school. How is your dd during the school holidays? My dc were always much more calm and relaxed during the holidays, so we knew that the problem was mainly school related. If she overall enjoys physical school but needs emotional support, I heard of a charity that trains support dogs for autistic people, who are registered and so can accompany their owners to school, into shops etc.

Thanks both

@StrivingForSleep she has seen two Ed psychs for her diagnostic assessments but not separately. And yes she's seeing a continence specialist consultant rather than a general paed so I'll have a look into the other routes for the sleep. And the OT - hadn't found that directory thanks.

@NellyBarney thanks for sharing your experience, it's helpful to hear and I'm glad you found an approach that worked for your DCs. Mine is usually much better in school holidays, yes. I think the problem with online school in her head is how much she hated it during the pandemic. But that was quite a long time ago now and obviously came with all sorts of other issues, so I'm not sure it's that comparable. I think she wants to like physical school but she just doesn't, if that makes any sense. She would absolutely adore a dog but I'm allergic so that's just not possible.

Whereabouts are you roughly, OP? The sensory OP we saw was based in Chiswick with another clinic location in Kent.

An EP assessment not just focused on the diagnostic assessment will help.

We're in East Anglia so Chiswick is a bit of a trek though not impossible.

@StrivingForSleep ok thanks I'll have a look at more general ed psych input too

For an EP assessment, you could look at Palmer & Palmer. They are excellent. Really ‘get’ ND girls.

For OT, Jo Woods travels far enough to cover some of East Anglia. There’s also Islay Adams, Laura Jepson, Claire Ginty and Bursting with Potential covering your area, in the order I would use them.

We're SE London but it was easy enough to get to by public transport.

Sensational Kids Therapy and Training

g.co/kgs/T428pbC

If you use Sensational Kids in Surbiton, I would use Aniesa Blore herself.

Sorry for the delay in replying, I thought I had. It's amazing to have these specific recommendations and I am pursuing. Thank you.

It sounds like a lovely school and lots of adjustments in place. Long journeys for animal therapy sound as if they could be exhausting. Is there any way to get the contact with animals that won't trigger your allergies? Is there a local stables or riding for the disabled place where she could help with the horses? Or could you have small furries that could live in the garden or a shed? I think anything that would give her a sense of agency and competence and get her out of her head and into her body would be useful. For us it was rugby but that brings its own social challenges- but it was the physical activity and doing something a bit scary that paradoxically decreased anxiety

There are loads of possibilities for animal assisted therapy or animal assisted learning/care farm type places in East Anglia. For example, for animal assisted therapy, depending on where in East Anglia you are, you could look at Our Animal World, Paws for Thought, Dogs for development, Kate’s Garden, Silverbirch, Together AAT, Snakes Alive, Sally-Rosanne Phillips, Thrive OT, Cherry Tree farm, Participation Dogs, Carrie Bates. Then there are other options for assisted learning or care farms such as Cambridge Equine Assisted Learning centre and Dedham therapy farm. If none of these are close enough and you want to post or PM where you are, I can post other suggestions.