DD14 in middle of autistic meltdown, any ideas please

[NTmumAutisticteenagemeltdowns]

Hello,

Has anyone got any suggestions for what to say / do when autistic teenager in meltdown is screaming at me demanding answers that I can't provide to impossible questions?

DD 14 has a clinical diagnosis of autism. She is in mainstream school, doing brilliantly academically and has friends. I love her to pieces and she is the best thing I've ever done.

On Mon there was a change to her schedule. I don't want to post all the details in case of outing, but for context she knew well in advance, and it was unavoidable and noones fault. She ended up in games doing an activity that she does occasionally but dislikes. Typically a change like this she would either have been fine with, or grumpy at worst.

She is furious with me, and has been since Monday. An hour of yelling prior to putting on her seatbelt to go home. Intermittent screaming at me or dh everysince. Off school today.

In the mid to long term she has started seeing a therapist and we have already touched base with her school who have suggested alternatives to that activity.

When she is screaming at me - which can last for an hour - I know its autism and her emotional brain has taken over, but the problem is she is asking logical questions. She is obsessed that I 'have to something to make this up', 'I'm not trying', 'I haven't come up with any ideas', 'she hates me', 'I'm the worst mother ever'. She doesn't know what she wants, its my job to fix this and she is furious that I'm not able to.

I'm able to stay calm, tell her that I love her, I'm sorry this happened, I'll always be there for her etc but this 'isn't fixing it'. I've offered hugs, chocolate, baking but these are all 'normal things' and hence unacceptable.

I think an offer of a unicorn might be acceptable, although I'm not sure as she is just so furious. But even if I conjured one up, I'm not sure how comfortable I am providing a wildly extravagant 'making up' gesture for a relatively minor thing that I had no control over.

All the advice is to leave her to calm down, but she is unable to calm down and just comes out the scream at us.

DH and I are married, DD is our biological child, she has a safe loving home where we've always tried to put her needs first.

And idea on the best (or least worst) short term action?

Thanks

is she eating? on screens?

Eating, drinking, using toilet, using screen to calm herself down. Not self harming or considered at risk of.

We had a 3 day meltdown 8 weeks ago called GP, NHS111 etc and had phone call with CAMHS but threshold for immediate help wasn't met. School very supportive. CAMHS offered signposting appointment but no other help.

Very luck to be able to afford private therapy, which I think is the right mis term solution, but just wondering if anyone any short term ideas.

What worked with DS but never DD was calmly asking what they think should happen.

We had a 3 day meltdown 8 weeks ago

how did it blow out in the end?

missing school but then having the day chilling out in her room in unlimited screen - that is going to become a habit OP.

Do you and your DP not have to leave her to go to work or out?

Thanks, that might be worth a try. She is desperate for me to say something but I have run out of ideas which is making her more cross.

missing school but then having the day chilling out in her room in unlimited screen - that is going to become a habit OP.

That's definitely what happened with our DD.

What happens when you talk about it when she is calm?

I had similar. Turned out our "straight A" student spent all day masking at school and fell apart once they got home. Usually by becoming very withdrawn but sometimes meltdowns which escalated into self-harm. We now have an additional diagnosis of school-related PTSD and are educating at home.

Your DD sounds very distressed. Does she have access to a specialist autism clinic- such as what used to be called specialist CAMS?
First of all she needs to find a way to calm and reduce her level of distress and arousal and I guess that is what she really needs help with ( although she is asking for compensation sounds like she is really asking for help to feel less awfully distressed). Secondly a plan to avoid or reduce the impact of a similar thing happening again.
Was the meltdown was caused by an having to participate in activity she was unprepared for (emotionally or practically) or that she disliked the activity- or the final straw towards the end of a difficult term? It is not your job to compensate for the change in activity but she needs help to regulate the distress. My ds ( now an adult) used to run after me too if I tried to leave him alone so me getting on quietly with calming safe ( no knives no loud noise) activities near by sometimes helped. But in the end (the meltdowns were happening in school) we tried medication and actually that did help.

@NTmumAutisticteenagemeltdowns
What advice have you had from her therapist? How does she use her sessions? Are they to vent and rant or do they go through the issues and try to understand what caused the meltdown and how to prevent in future.
I also wonder if that meltdown was the tip of the iceberg and she was on burnout mode.
Also, did it coincide with the time of the month for her? Any correlation?

Hello,
Thanks for the follow up replies. Autistic burnout has been suggested to else by a friend and that's what seems most likely.
We are in an absolute crisis. There has been no improvement. We are reaching out everywhere we can but she is not a priority for camhs as she has not made a suicide attempt, and the private sector pretty much shuts down over Christmas and new year.
I'm in tears writing this, I can't believe that a child can be in this bad a state but noone will help us.

Really sorry to read your update. I get it - we were in the same position this time last year although my dd was still masking so we didn't have the violent outbursts. In the end we met the threshold (in our case, two hospital admissions), and got the referral to camhs but it wasn't the silver bullet we hoped for. It sounds as though you are in the fortunate position to be able to afford private services. If therapy isn't working then don't continue - my dd didn't respond to therapy at that stage. What helped was medication (initially prescribed privately but now via camhs), hands-on animal therapy, and in the last few months meeting up with other teens of the same age with similar profiles. In the very early stages I tried to make sure we went out for one "fun" thing every day - macdonalds, beach trips - just to get her out of her room. Remember that Christmas is the worst time of the year for many autistic teens (and adults). It it goes without saying that my dd is no longer in school although still registered and we are waiting for an EHCP (have been waiting more than a year now so I don't hold out much hope). If like us, you are dealing with autistic burnout and school-related PTSD then recovery is a very slow process. I have been very fortunate to have an understanding workplace and have reduced my hours. You don't say where you are but in the past 12 months I have met many other families in the same position - there are resources out there and plenty of alternatives to the traditional school conveyor belt. Just make sure that your dd knows that she is loved and supported.

Thank you for reaching out. I'm so sorry that you are having these difficulties too.

We had an out of hours Dr visit at 2am last night. He was brilliant and agreed to expedite her case. So it's now waiting for case leads review next week and we continue the obstacle course that is access to childrens health services.

Could I ask if it was the principal of school itself that caused PTSD, or school being unwilling to adjust?

I'm interested as our daughter has been thriving at school and has a small group of real friends. I'm sure basking has been going on, but the friendships are genuine.

All through her school have been fabulous and are are basically now offering us anything, part time, favourite lessons only, time out card, uniform exemptions etc.

So our current thinking is to aim for back to school with major adjustments, but it's so hard to know the right thing to do.

I know someone who's had had equine therapy locally so I'll ask for details, that's a great idea.

And I'm so lucky with work. Today I shared what's going on and people have been amazing.

Thanks again xx

It sounds like you’re starting to get the help you need. We have also had good support from school but it is clear that a large state comprehensive is just too overwhelming for her - a smaller school with good pastoral support and lots of choices might have worked.
Equine therapy has been a game changer for us. More expensive than conventional therapy but worth every penny.
Medication had also helped.
Good luck x

Thank you for this thread @NTmumAutisticteenagemeltdowns we are currently researching what to do during & after meltdowns & we’re thinking of paying for a few sessions privately just to work on this. It would just be nice to know that we’re doing everything you can do at that point even if it’s still awful. Can I also ask @azteccandle what kind of medication made a difference for your dc. Our dd has tried a couple of ssri antidepressants but they don’t seem to have made a huge difference (she’s 18).

I think that whilst school is being very helpful, she needs to know what to do in the event of a sudden and unavoidable change.

Whilst not blaming school, could you assertively word it (when she isn’t in meltdown mode), that the school mismanaged the situation and you completely understand why your DD is upset/cross etc.

That shifts the blame to someone outside your home in that moment and hopefully your DD can realise it isn’t you to blame. Then with my own DS, I used to plan what we would do next - again, when he was out of melt down mode. We would chat everything over when he wasn’t exhausted from meltdown and I would get him to agree with me what he was happy for me to do/who to speak to/what to ask them etc.

This obviously might not work for your DD but bordering on blaming the school did seem to get him to come round to taking his anger away from me. Although I couldn’t go too far otherwise he wouldn’t trust the school at all and would refuse to go in.

When it came to what to do during a meltdown/freeze as he got older, it was tough but just getting him to a comfy space and letting him bury himself under his duvet or sit in the dog bed etc, would allow him time to verbalise his anxiety.

If it was refusing to go to school meltdown, there was absolutely nothing we could do - even after, when it was finished, he was so burnt out he wouldn’t manage going in. Eventually he left mainstream and we got him into a special school. Not brilliant as he was pretty academic but it meant he had some goals and friends and he achieved some good quals.

@azteccandle Would you mind sharing what medication has helped your daughter? I'm specifically asking as we are trying to get past the CAMHS gatekeepers, and we are finding the more options we ask about, the more informed we seem and the more seriously we are taken. Thank you.

@NTmumAutisticteenagemeltdowns We started on sertraline then switched to fluoxetine and are now back on sertraline again. I know other children that have tried several different types of anti-anxiety or anti-depression medication before settling on one that works. I also know of children that have been prescribed an anti-psychotic medication to regulate intrusive thoughts although this may not apply to your daughter.

@azteccandle thank you so much. Out of hours doctor suggested that whilst she was currently presenting with anxiety there was no sign of depression or psychosis, which we agree with.
My feeling is the more informed we sound, the less likely we are going to be sent another link to another autism awareness course.
Thank you xx

It wasn’t suitable for my DS as he has an eating disorder and so we couldn’t guarantee him taking daily meds, however, CAMHS did suggest trying Propanalol. It’s used to reduce anxiety. He took a low dose for a while to reduce his super fast heart rate and had no side effects.