Autistic burnout - please help!

[PetaPip]

Hoping to get advice/support on autistic burnout in teens. My daughter has been struggling for 2 to 3 months now, starting with panic attacks at school, then EBSA, now it's the holidays it's still getting worse she's dizzy and panicky all the time and doesn't want me to leave her side. We've had to cancel holidays and I'm worried about the impact on her brother as well. She is completely miserable about not being able to do anything and feeling so ill and I can't find anything that will help. She won't try medication because she always gets side effects and although she was seeing a therapist she now can't leave the house so I think she's unlikely to see her again. I am off work at the moment as I work term time only but I am really worried I'm going to have to give up my job if things don't pick up a bit. I feel so alone with it all, it would help maybe to hear others' experiences.

I think that it would be advisable to book an appointment with her GP this week, OP.

Do you think that she will refuse to return to school at the start of term?

Yes, there's no way she will be able to go back to school in September. Not a chance 😪. We have seen the GP previously and there's pretty much nothing they can do. She prescribed propranolol but DD won't take it because she says it makes her feel worse. I don't think she would try any medication at the moment. I am completely in despair, I can see her just not getting out of bed for months.

Book another appointment with the GP.

Would the therapist do home visits? Or online if that works for DD? If not, would she be open to someone else who would?

Has DD ever had an OT assessment?

Does DD have an EHCP?

Are you receiving DLA for DD?

What is DD’s eating like?

How is her sleep?

For DS, look at your local young carers service and Sibs.

How old is she? Was the therapy following a referral from the GP? Can she access online therapy? Has she been seen or on a waiting list for CAMHS?
Could it be a crisis relating to her diagnosis? Does she have any autistic friends?
Will she not even go in the garden? Feeling grass under her feet? Listening to birds looking at clouds etc? Sounds simple but very calming.
Does she have any special interests that you could tap into?
Sorry you had to cancel a holiday that sounds tough.
Apologise for all the questions. Have a browse and see if you can find anything to help and support.

https://www.youngminds.org.uk/

https://explore.kooth.com/all-about-our-confidential-chat/?utm_source=google&utm_medium=cpc&utm_campaign=kooth-uk-growth-areas-en-ggl%7Csrch-nb-help-chat&utm_term=free%20online%20therapy%20for%20teens&gad_source=1&gad_campaignid=22579413053&gbraid=0AAAAAC2KQ4M1NWs2We9IOQ64OlHZC_CjX&gclid=EAIaIQobChMIsPTrqPKBlgMVJ5ZQBh2f8gryEAAYASAAEgI3_PD_BwE

https://www.getselfhelp.co.uk/

Look for books by adult autistic women or books for/ about teens like

https://www.amazon.co.uk/Autism-Students-Limpsfield-Grange-School/dp/1849056846

I know she won’t have meds how about natural remedies? Patches ( Wonderpatch) B vits might help

@PetaPip

How old is she, OP?

Does she have an EHCP?

Hi everyone, thank you for your replies. She is 15, just finished year 10. The LA has agreed to do an EHC needs assessment but we won't know the outcome for a couple of months yet. Her eating is up and down but not terrible at this point. Her sleep was relatively good until the last couple of nights when she has struggled. I have started receiving DLA which I am using to try to get her support, therapists etc. I have booked an appointment with an OT who is coming to the house. Not sure if the other therapist will do that.

Special interests are tricky because one of her main ones involves leaving the house and she is very upset she can't manage it at the moment.

Thank you for the links, I will look at all of those.

The therapy is private, found and paid for myself. I believe she is due to see someone following the GP referral but I haven't been contacted yet and I'm not sure if they are thinking it's going to happen at school? But she definitely won't be at school in September...

@PetaPip

If the EHCP were in place, would Limpsfield Grange be a possibility, OP?

https://limpsfieldgrange.co.uk/

Where are you in the EHCNA process? Is the LA sticking to the timescales? Have you requested the LA seeks advice from all the necessary people include SALT and CP &/or psychiatrist? Will the OT you have booked write a report for the EHCNA? If not, you have you request an OT assessment as part of the NA too?

@TheSquareMile unfortunately not for us. I think an online school is our best option. I quite like the sound of The Haven, run by the autistic girls network. But we would need the funding.

@inthequietofdawn I think they are sticking to timescales so far but 20 weeks will take us to around October half term so still quite a long way off. I have been informed they will be consulting professionals. Yes, the OT has said that she can write a report for the EHCNA which I will definitely ask for.

@PetaPip

What has the head of her current school said about what is happening, OP?

@TheSquareMile I met with the senco and head of house at the end of term and they were sympathetic but the reality is that as a mainstream school they cannot offer what she needs. They offered lots of adaptations for September but since that meeting she has got worse and they will not be able to meet her needs. They have said that for them to help us organise a section 19/alternative provision she needs to be declared medically unfit for school by a health professional. Last time I spoke to the GP she said the NHS has a policy of not signing children off school so I'm not sure what I am supposed to do!

Rather than leave all the decisions about whose to seek advice and information from to the LA, make sure you request anyone necessary.

During the EHCNA the LA must seek advice and information from various people, but one part of the regulations includes advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from. This can include things like SALT, CP &/or psychiatrist. Be sure to request anything that needs seeking under this.

If the independent OT you are seeing is going to write a report, the LA must not seek further advice if you, the OT and the LA believe it is sufficient. However, LAs sometimes claim it isn’t sufficient so they can seek their own which 99.9% of the time is conveniently less detailed, specified and quantified.

An absence of medical evidence does not automatically mean the LA doesn’t have a duty to provide section 19 provision..The LA will still have a duty under section 19 of the Education Act 1996 to provide a suitable full-time education or as much as is possible if full time in any form isn’t suitable.

I would check what the school is recording the absences as. They should be coded as I, and therefore authorised. If they aren’t post back here for next steps.

@inthequietofdawn thank you that is all very helpful. I know her absenses have been mostly authorised so far (although only since getting a doctor's note to confirm anxiety). I will chase up SEN to find out which professionals they are going to get advice from.

Mostly authorised

I would challenge those that haven’t been authorised. If DD is absent due to illness, including mental ill health, the absences must be authorised. Email the school requesting the absences are authorised. Remind them the Regulations (School Attendance (Pupil Registration) (England) Regulations 2024) make it clear where a pupil is absent because they are unable to attend due to sickness the absence must be regarded as authorised. DfE’s statutory attendance guidance also states absence due to illness, both physical and mental health related, must be coded as I.