Autism burnout?

[RosieTheChi]

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. Today, she is laid 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.

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

I have told professionals this evening 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 carets who have been through similar as I feel so alone and don't know what to do for the best 😢

Whilst much of what you have described of your daughter’s withdrawal behaviours seem familiar to me as burnout, albeit in a far more extreme way, the hearing of voices and perception of non-existent threats, certainly to the degree you’ve explained, does pull her experiences so far from mine that I couldn’t recognise it as such.

I am not an expert, had so little understanding of autism that I didn’t recognise myself as being autistic (I wondered if I was Bi-Polar, but it never truly fitted), but, outside of Bi-Polar Disorder and Schizophrenia, my understanding is that Borderline Personality Disorder does often include psychotic episodes and there is a lot of overlap with Autism, so much so that Autistic women are often wrongly diagnosed with Borderline Personality Disorder, that someone can have both also complicates matters.

I did go through periods during my 20s when I’d withdraw and shutdown for days (sometimes weeks). I had no idea this was burnout and attributed it to depression, I lived alone, all I wanted was to be unconscious and wouldn’t eat and barely drank for days at a time. There is no single answer on how she can pull through, but there must be answers for your daughter. Alas, she may not be able to put them into practice yet, and it may take a long time to identify them. All that’s certain is that they will be absolutely unique to her. That you care about her and continue to do so is an enormous part of this solution. For myself, knowing, really knowing, that my Father loved me is what pulled me through this part of my life.