Autistic burnout?

[RosieTheChi]

I previously posted this on the SN boards but there's not many on there. This is such a long story and I don't even know where to start.

My DD was diagnosed with global developmental delay when she was around 4/5. The diagnosis then changed to a moderate learning disability around the age of 9/10 and now professionals are fairly confident that she is autistic (she's 20 now). She is awaiting assessment for this.

In December 2018, her social anxiety became quite bad, to the point where she refused to go to school and wouldn't go places that were busy or had a lot of people, such as shops or restaurants. This lasted 2 years or so until she started to slowly take steps towards recovery. She attended college but did struggle with lots of people around her.

Towards the end of 2022, we had an incident happen that scared DD and sent her into a mental health decline. She was hearing voices and believing things were happening when they weren't, such as people smashing our windows, people in our house on the landing etc. it got really bad and she ended up having to be sectioned in February 2023.

She finally came home in September 2023 and has been making fantastic progress, such as eating all her meals and drinking well, showing an interest in her phone and watching TV again. Just little things but huge steps forward for her. She even started talking again as she had been non-verbal the whole time she was in hospital.

This last month she has had difficulties with infections and constipation and she has again become non-verbal. I have noticed a pattern in her behaviour that whenever professionals visit or try to get her to leave the house, she will withdraw and stop eating, drinking and engaging. When she is like that, she will lay on her bed in the foetal position when someone goes in and will only have liquids if they are syringed into her mouth. She is usually like this a couple of days and then pulls out of it. She's been doing ok the last couple of days and has been eating and drinking independently.

Could this be autistic burnout? Her psychiatrist has diagnosed her with severe depression and anxiety which she definitely has but does it sound like it could also be burnout?

I have told professionals that I don't think it's of any benefit to her at the moment to be forced to go out as it has such a negative impact on her for the following few days. They said her anxieties need to be challenged, which I agree with, but she scared to even leave her bedroom so I think leaving the house is a bit of a leap.

I would just love to speak to other parents or carers who have been through similar as I feel so alone sometimes and don't know what to do for the best 😢

Dd went through autistic burnout at 14 when secondary school became too much for her. She wasn't eating,barely speaking and wanted to do nothing but lie in her bed. What helped was rest and no demands on her and letting her do what she wanted to distract herself. So she mostly wore pyjamas as they are easy to get on and off and it signalled to her that she didn't have to leave the house if she didn't want to as leaving her safe space was a trigger. We had CAMHS here fortnightly but no more than that and that was enough. She even found visits from her older siblings exhausting so would stay in her room if she didn't feel like it. She had no appetite, I made the foods she wanted when she wanted them and I'd distract her whilst she ate as it was too much to contemplate eating a plate of food. She did what she wanted to do so she likes her switch, she likes to draw and she got a lot of comfort from the dog who sat with her or on her. Only when she was feeling stronger did we attempt to put routines back in place and much later did we work on leaving the house again.
She is 21 now, she is fragile, we have to make sure there aren't too many demands placed on her, she needs plenty of rest even now and if there is a spell of plenty going on we need to make sure that we build in a period of rest to let her recover.
It was a really difficult time,I hope you have people round you to support you as I think sometimes a parent/carer's role and their wellbeing is overlooked.

@hiredandsqueak thank you so much for your post, I can't tell you how helpful it is as I do often feel very alone in dealing with this and to hear others who have cared for their children in similar situations is comforting.

I'm so sorry to hear your dd also had burnout though and as parents it's heartbreaking to see them go through it. It sounds so similar to my dd. She won't leave the house at the moment and won't even leave her bedroom unless it's to use the toilet (which takes a lot of support and prompting from me). The professionals are trying to get her to stay in a routine with carers every day; getting showered and dressed every day etc and they even attempt to get her to go out but I just think it's all too much for her. She's been through so much in the last year.

How long did it take your dd to start to recover, as in leaving her room etc?

Dd didn't leave the house for eighteen months at all. It was probably a year before she started spending long chunks of time downstairs. Any "what she perceived to be pressure" would push her back so I just went with what she wanted.
She has always loved a bath with a lush bath bomb so she bathed whenever she wanted whether that was every day or every couple of days. It was a good while before we started having gentle routines and even then if she didn't feel up to it she didn't meet the routine.
She would never have managed having carers coming in and being expected to wash and dress to order, she bathed when she wanted whether that was before bed or at some point during the day and would put on clean pyjamas.
CAMHS coming fortnightly exhausted her and she would sleep for hours afterwards. So I wouldn't have wanted lots of professionals seeing her as every interaction took so much effort that she needed to rest and recover from.

@hiredandsqueak bless her. I'm glad that she is doing better now though compared to when she was first burnt out.

My dd has the added complexity of her learning disability too. She will also be incontinent if I didn't take her to the toilet which I believe after reading your post that getting up and using the toilet is perhaps just too much of a demand for her unless supported and prompted. She wears incontinence pads. On a bad day, she will just be laid on her bed with her head down not doing anything but on a better day, she will watch tv and change channels etc.

This has really been an eye opener as I've had professionals constantly tell me we have to stick to routine and make her do these things but your experience shows that isn't always the case. I have noticed my dd will also 'shut down' if too many demands are placed on her which I think is the issue with carers at the moment. They are lovely ladies and dd likes them but the whole thing is just too much for her I think.

I have a meeting with the psychologist tomorrow and I'm nervous because I know she will say not to cancel the carers and we need to keep pushing dd.

If she likes the carers would she rather them come and have a cuppa with her,or brush her hair or paint her nails. Does it have to be the whole shower and dress? Can you suggest to the psychologist that you have a break from the carers and review in a couple of weeks? If there is improvement then the carers every day is too much,if there is no improvement then you can reconsider having the carers again. It's a massive demand having people in the house and being expected to shower and dress to order and knowing that it is going to happen again the following day.

I completely agree with you, it is a huge demand.

The psychologist replied today and said she is concerned about me removing the carers as they are there to prevent deterioration. I feel like they don't understand what I'm trying to say to them.