Autistic burnout. PDA. EBSA

[AEEG]

Hi.

We’re on the right to choose pathway for an official diagnosis but I think my 14-year-old is in autistic burnout. She tried and tried to go to school for months but School were not supportive at all. We even changed to schools but that didn’t help either. In October last year she just couldn’t do it anymore and stop going all together the arguments to get her there were just too much for everybody. I put her mental health first and stopped asking her to try.
She now spends most of the day in her bedroom. I even swapped rooms with her because I felt so sad she was stuck in a box room all day so I decorated and she now has my old double room so she can have a desk, more light and a double bed.
I do try to get her out everyday even if it’s just a trip to primark or the coffee shop ( I’m very lucky I work for my self so I’m able to give her lots of my time) some days it’s very difficult to get her out and she always wants to come home very quickly.
She struggles with family meals. She doesn’t sit to the table to eat. She’s very angry all the time and we’re all walking on egg shells. There’s just me her and her 16 yo sister at home. Sometimes she can be really lovely and there is glimmers of my lovely child coming back (she used to be so confident so lovely and never had a care in the world) but most time she just acts like she so pissed off with the world and is so angry and comes across like she’s so rude and no respect sometimes. I try my hardest to walk away and not react. The more I’ve researched the more I do think she’s in autistic burner and she has PDA traits.
How do I know when she’s starting to come out of this and please tell me it does get better this time last year we had food at ours with my best friend and her daughter and my daughter came down stairs and we had food downstairs and she joined in and now she wouldn’t even do that. It’s too much for her. How long does it take for them to start to do things again and interact with family and friends? Please tell me this will all calm down and we’ll be able to go out for meals etc again soon just like we used too.

It so hard. I’m going through similiar with a much younger child.

Have a look at the website barriers to education.

I would say PDA is very rare but there are a lot of other types of demand avoidance including excutive function and sensory avoidance so it may not be the demand it’s self that is problematic but the sensory issues or her lack of excutive fuction which is preventing her from meeting the demand.

If your daughter is autistic then in an ideal world she will start to unmask and advocate for her needs. It maybe that going out for dinner will always be a difficulty for her and she will choose not to do it or to do it rarely because that’s what she needs to protect her mental health.

Burnout lasts for months or even years. You will know when she is starting to improve because things will become a possibility for her again, she may consider doing things or suggest some thing. Often she won’t actually be able to do them but she will be interested in the potential.

I would look carefully at the trips you’re doing. Are they the right trips for her? For my daughter going to Primark would be her worst nightmare and would just be making the whole situation worse.

It took my DD a year to recover. It was a full year of pretty much zero demand from me. I suggested lots of different things like day trips out and online learning but she didn’t really take me up on anything and I never forced her. It was incredibly difficult and I felt so helpless and questioned my own parenting skills. Then, seemingly out of nowhere she decided she was going back to school and that was it. A year of reduced timetable and now back full time.

When things were really bad I found reading about other children who had recovered from burnout very useful which is my main reason for posting.

I hope everything works out for you and your DD 💐

I would suggest it will be tricky to ‘diagnose’ PDA when she is in burnout -

I would focus on healing from burnout, then when your real daughter finally emerges from that, have an open mind -
acute stress / burnout can truly alter someone’s relationship with themselves / others / the world around them -

so she may well not appear PDA at all, once she is not burnt out

she may do, but the burnout is the priority -

sleep, regular good quality meals, decent fluids, daylight, some exercise / movement,
low pressure activities such as crafting

be aware the more screen time - as in social media and short videos / reels are strongly associated with high levels of stress and low mood - even though someone with stress and low mood will actively crave these short shots of dopamine - they ultimately drain the mental battery and leave the person in an endless loop of craving and topping up and feeling stressed and low

Thankyou everyone.
I have taken all demand away and don’t force anything. She loves a trip to primark for pjs. But it never lasts long. In and out. She asked to go to the cinema last week. She was amazing for about an hour then we had to leave. She has slowly started to talk about going back to her old school but I don’t think she’s anywhere near ready.
she used to love going away for the weekend with me and her sister or out for tea but now it’s her worst nightmare. Will she get back to loving life and wanting to go away etc or have that changed forever 😩😩😩. Xx

You will know when she’s ready. She will just take herself off. What l noticed was my DD’s colour came back. She looked yellow in burnout. Suddenly one day the roses in her cheeks were back.

Mines been in and out of burnout for 5 years. Getting better though.

Just reduce demands as much as possible. Don’t make her eat meals at the table, that’s just another demand. Mine ate hers in her room for 2 years.

She will be changed by the experience. You will get your Dd back.

Thankyou. She will or won’t be changed by the experience? She will come back how she was??? 🙏🏼🙏🏼🙏🏼🥰

I feel for you. Are you considering having her assessed? I also think mine DS 15yr is in and out or burnout. We are wondering whether it is worth going down a private route to have him assessed for ADHD and ASD. We totally know won’t help this year - GCSEs and we have tried to take as much pressure off and have even said don’t do the exams if he doesn’t feel up to it. We have at least one day at home a week where mainly he sleeps. Am trying to wrestle with taking his devices, hard as he listens to a lot of music whilst he sleeps it seems to keep him calmer. So hard and I really have days where I don’t know what to do for the best

Mine is still cautious about demands. She is ok at university. She isn’t the bubbly happy girl she was, although l see glimpses of it. I think she shows this with her friends though. Actually she’s quite similar just worries more. Anti depressants have helped

But she’s 19, and went into burnout at 13. So she’s changed into an adult. She still wants to do stuff and go places but much less than she did as she gets tired easily. But that might be also because she’s now an adult.

Actually what really did help a lot was ADHD medication

That was the gamechanger that moved her forward.

My child is still in burn out but I keep thinking how she was before or more importantly what she did before was her masking and that lead to burn out so she needs a slightly different path.

Getting a diagnosis helped my daughter as it meant she could be prescribed melatonin which was a game changer for her.

I didn’t restrict devices as she was generally watching films or doing creative things like design and also keeping in touch with her friends

I went through this with my child who is a bit younger and then started seeing the burnout come back when she began secondary school and they failed to put proper support in - my daughter has a diagnosis and EHCP (just to say that saadly even with all that, we did not get the support she needed)

My daughter came back to life - over time.

I personally believe (and I know a lot of autistic girls so have seen in others) - that you do need to gently constantly look for ways to get them out of the house even in such small ways.

my daughter benefited from the gentle things you describe here - little trips to shops she likes/ a coffee/ a walk round town and hot chocolate at the end just to get her out - she actually grew and grew in her abiity to do these walks and they kept her active.

Howevr, e had days she would refuse to leave her room

This was easier with a younger child - but I kept up social links - it's harder once they are at secondary but I would offer to take a couple of kids out/ or for a visit somewhere they want to go etc so I could help her see her friends.

Its really hard and it helped that I found a community in our city - is there a local facebook group for autism for example, you might find other parents in there in similar situations

we also got melatonin which helps with sleep, I try to stick to routine in evening even when there is nothing to get up for!

My daughter actually returned to school (of her own choice) - which I wouldn't have believed possible - becaause her primary put a lot of extra support in place

Again, this is personal but I have done both zero demand with screen and a slightly more boundaried approach - and have to say my daughter is in a better space mentally/ more creative etc when I do limit her use of ipad/ tv etc -

I wanted her to be able to occupy herself without screens and through forcing it she has gone through the boredom parts and is a lot better at it now - even better than her siblings tbh -

I felt I needed her to have that capacity - as she is spending so much time alone at home.

The average length of PDA autistic burnout for an over-10 year old is 2 years but it varies wildly and can range from a few months to 5 years. Were 18 months into burnout with my 13 y.o. though school wasn't an issue here.

Most PDAers do best with unlimited screens in burnout but not all do. My son spent about 9 months being nocturnal.

Things that have helped here are zero demands, no attempts to get him to do anything at all (including leaving the house), stopping all visitors, giving nutritional supplements but only those that are tasteless or can be applied topically while he sleeps - he can't cope with the demand of knowingly taking any.

We are seeing clear signs of recovery and improvement but we're not out of the woods yet (he still has zero desire to ever do anything with anyone outside the immediate family). You'll know when things are improving as your child will want to do more.

Are you on any PDA support groups like The PDA Community or Pathological Demand Avoidance (PDA) Support Group on Facebook?