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 😢

https://neurodivergentinsights.com/misdiagnosis-monday/autistic-burnout-vs-depression

Hope this helps a bit, you are doing the right thing, don’t push her to try and do things she isn’t ready for. Take things an hour at a time and reduce all demands and expectations on her. Sending you love, our job can be unbelievably hard at times.

There is overlap, yes, so it could absolutely be autistic burnout. If medication/treatment for anxiety/depression aren't working then I'd treat it as autistic burnout.

"Pushing through anxieties" will only hinder someone in autistic burnout and prolong it. She'd need less demands, not more, until she recovers.

I'd trust the psychiatrist and the professionals more than random people on the internet. They will be the ones who can assess her properly. Has medication helped your daughter?
I feel really sorry for her and for you.

I definitely WOULDN'T trust the Psychiatrists advice over parents of ND children or ND mumsnetters. And I say that as a ND daughter of two very well regarded Psychiatrists!!!

Anti depressants and anti anxiety meds made me worse, as they do with many ND people. Years of my life were stolen through inappropriate diagnoses of anxiety/depression (starting in preschool!) when I was actually struggling with burnout and being repeatedly forced to "push through anxiety".

Usually I would agree. I absolutely do not agree when it comes to autism in girls especially.

@Pekoe78 Thank you for the link. I've just had a look at that chart showing the symptoms and she presents more like the autistic burnout side. She definitely has increased sensitivity to stimuli compared to before and seems 'more autistic' than previously. She has definitely had a dramatic decline in executive functioning, communication and life skills. She can't even dress herself anymore. It's interesting how it says about daydreaming - she 'zones out' and disassociates herself when things become too much to the point where she doesn't even think about eating, drinking or using the toilet.

Medication has helped her paranoia and the psychosis she had but she's still very anxious and when she has a bad patch, the medication doesn't really help much. I'm waiting for a medication review to see if she can be given a higher dose to help her function better in the day.

She's on Mirtazapine, Olanzapine and Diazepam.

It does sound like burnout. I cannot speak or function when I’m in a state of autistic burnout. I can’t even think straight my words get jumbled / wrong in my own mind

I don't know whether to let professionals come and try to engage with her at the moment. Obviously they need to for the necessary things but the speech and language therapist wants to come on Wednesday to go through some speech cards with her or something.

Thank you for sharing this. This sounds like my dd. She can text me on her phone but interacting in person seems too much for her at times.

Hi, may be helpful to check out this website - https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

Oliver’s mum is a huge advocate for people with autism. I’m sorry your daughter is having such a difficult time, and you all x

I wouldn't trust professionals over your own insight into your DD either.

Challenging in the abstract is one Thing, when you're the one witnessing and dealing with tge aftermath, is quite another.

Listen to your DD and to your own instinct and experience.

Exactly! I'm the one that has to deal with her withdrawing after professionals visits and then having to basically keep her alive by making sure she gets liquid into her every hour.

I don't know whether to cancel the speech and language therapist. She wants to come to do 'yes' and 'no' cards to see if dd will use her eyes to engage. She's also talking about bringing a student with her. I just think it's unnecessary at the moment and could potentially make her withdraw again. What do you think?

Thank you, I will have a look at this website.

So my dd had her carer come yesterday morning after a break from carers for 4 days. During the 4 days, she started eating and drinking again and doing really well. After the carer has been, she's now not eating and drinking again.

I don't know what to do for the best now. Could have carers come in be too much for her if it is burnout? Could it be hindering her recovery?

Yes, it could have been too much if she feels she has to "mask" for health care professionals. Masking is draining and can take a lot of effort.

Some days I am genuinely catatonic after masking all day at work. I quite frequently don't move from Friday evening until Sunday morning and am nearly mute, need low lighting, loop ear plugs or ear defenders to numb all the sensory stuff. This is the only way I can hold down a job! Socialising with neurotypicals often exhausts me. Medical appointments really drain me and I need to sleep and not talk for a few hours afterwards.

That's brilliant that she was improving before. She needs more of whatever led to the improvement!

@SoOutingWhoCares Thank you so much for replying. It is a massive help hearing it from your perspective as someone who suffers with this. Does it also stop you from eating and drinking when you are in burnout?

What led to her improving was having no visitors for 4 days. She was eating, drinking, watching tv etc. since her carer has been, she's gone like this again.

She has carers come in 5 mornings a week. Would this be too much for you as someone who also struggles?

With me it's more that I "forget" to eat and drink and need a lot of prompting. I do think that I am trying to conserve energy and I guess eating is a demand.

I have protein shakes, cereal bars and soups (easy, bland, foods) for when it's all too much as they're less effort to eat (or prepare). Maybe ask her what her "safe" foods are.

I'm very "high functioning", I'm a lecturer and have never had any form of care really so I may not be totally helpful as your dd sounds like she needs much more support.

I'd personally find carers (or anyone!) coming into my home 5 times a week horribly intrusive because I hate having to mask at home and it would have a really negative impact on me.

It sounds like burnout to me too. I would try and take away anything that demands masking or energy unless completely necessary. Food drink, sleep and whatever keeps her feeling safe.

This is what I'm struggling with. Do I keep the carers or leave her be?

Also the SALT wants to come tomorrow. I explained that I think it's too much for dd at the moment but she pushed it and wanted to come out.

Also for reasons of transparency, whilst I am diagnosed as neurodivergent, I have no autism diagnosis. I have been officially diagnosed with combined ADHD and some other NDs (dyscalculia, dyspraxia, pathological demand avoidance,
ocd) but I suspect I have AuDHD (Autism AND ADHD), I just haven't wanted to pursue an autism assessment.

Anyway, another tip for burnout recovery is to indulge in a "special interest". Most ND
people have a thing or multiple things that we are geeky about and can hyperfocus on. It will help lift her out of burnout if she can go down some special interest rabbit holes for a while.

Does she have things like a weighted blanket and sensory "items"...fiddle toys, squishies/plushes, lava lamp/snowglobes, ear defenders, light projector etc? Just stuff to make her feel safe? Some people have sensory swings/hammocks etc.

@SoOutingWhoCares Could you explain a little bit more what masking is? I've heard of it but not entirely sure what it entails.

Masking is hiding your neurodiversity and attempting to appear neurotypical.

We learn from a young age to copy neurotypical behaviour as our own behaviour is seen as odd/weird/inappropriate...so an autistic person in a dentists waiting room
might be supressing their need to spin around or repeat a certain phrase (stimming) because they know neurotypicals don't do this, they're also having to cope with uncomfortable demands such as eye contact, deciphering and responding appropriately to neurotypical ways of communicating (i.e "if the dentist asks me if I'm well, the correct answer is yes, fine, thanks not me speaking for 15 minutes about how sad I am that my favourite character died in a tv series, even though that's what I really want to talk about."), plus having to deal with sounds, smells, lights etc that are overwhelming and most importantly, acting like it doesn't affect them.

Masking is having to be "on" all the time. So I've always been a lecturer/teacher and there is an "act" for that, a "persona" that isn't how I behave around friends/family - I'd speak differently, move differently to an extent, use different language. Most professionals can relate to that (or the idea of a "telephone voice" or "best behaviour.". When you mask, you're acting that you are anyone but yourself, because yourself is neurodivergent and people want you to be "normal".

I'm actually at my own limits for today so will be heading off to bed in a sec but this might help:

https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-masking

Oh...and cancel SLT, it's what's best at the moment.