At wits end with ASD Dd 17.

[ArseInTheCoOpWindow]

She was diagnosed this time last year. Dropped out of school half way through year 12 (May) after self harming, currently in burnout.

She’s been in it so long. We don’t seem to move forward. Exhausted all the time. Sensory issues becoming unmanageable. She can’t bear any sound! Can’t wear earplugs as very prone to eczema and ear infections. Struggling with appointments. Refused to see her lovely pyschologist today as she is too drained from orthodontist last week. She was up all night dreading it.

How is she ever going to lead a normal life? I’m in despair. She’s got social anxiety and GAD. Fluoxetine hasn’t touched it. She just seems to get worse and worse. She’s asked for at least 24 hours notice if someone comes to visit. More and more rigid demands that we just can’t meet. I don’t see a normal future for her anymore. She’s gone from 9 GCSE and friends to nothing at all. In process of being assessed for EHCP.

I’ve had to forget everything l know about her and learn about this new stresses person who’s tajen
over her. It’s like she’s gone backwards. Except she’s not been like this before. How do l cope with this. It’s so hard.

Although it feels like an eternity, relatively speaking, it is still a short time. Improvement from burn out can take a long time.

How long has DD been taking Fluoxetine? If it has been a while, have you considered requesting to try something else?

Some find therapy that relies less on verbal communication easier and more productive. What does DD enjoy - art, gaming, animals?

Sorry, I’ve just picked this up now. Thank you for your reply.

Fluoxetine has been 3 1/2 months, but l think it messes with her sleep.

She has lots of special interests. She loved reading and drawing but is too tired now. She’s just been down a Jellycat wormhole and is managing gaming. But so so exhausted.

Does DD take anything to aid her sleep?

If DD games, have a look at Mindjam. If DD enjoys drawing have you considered a creative therapy?

Yes l have, l actually have a friend who’s an art therapist and I’ve been wondering about her.

She takes 4mg melatonin, but sleeps still weird.

You could try promethazine for sleep. Ds was prescribed melatonin by CAMHS and it didn't help him at all.

He was also on fluoxetine for about 18 months and we didn't really see any improvement with mood. Our GP swapped him to Sertraline in the summer and upped it to 100mg and there definitely seems to be a little improvement now.

All I can say is that Yellow is right it takes a long long time. Ds had an EHCP but still dropped out of mainstream sixth form in 2021. He started a specialist placement at the start of 22. And it's only since September that we've seen small steps forward (I thought the specialist placement would break down too) and we still have a long way to go.

I hope that your Dd can begin to make progress soon.

Has DD tried anything else to aid sleep? As Punx posted, there is promethazine. There’s others too.

What other stuff is there.? I’ve had Promethazine but l found the effect didnt really last longer than a week.

There’s lots of other medications that can be tried. Alimemazine is normally the next one to try. Others include clonidine or trazodone. Sometimes antidepressants such as Mirtazapine can help sleep so sometimes the young person’s antidepressant is swapped. I even know some DC who take or have tried a small dose of chloral hydrate.

This post is interesting to me as it describes how I currently feel regarding my 16 year old DD. She was diagnosed with ASD this year after not being able to cope in mainstream and I have really struggled with how little she is now able to manage vs what she could previously do. I assume it's due to burnout from years of struggling and masking. Sensory issues are pretty extreme and there's lots of comorbid stuff going on. I am also very worried re her future. I really hope she comes out the other side, and I hope the same happens for your DD. Would be great to hear positive stories of how things can turn around, even when they seem pretty dire.

Just thought I’d come back for more advice.

Shes still in burnout. She started getting a bit better in January. We got an EHCP and she started ASD 6th form one hour a week in March. Back to full burnout. She’s bored to tears.

Diagmosed ADHD recently. The meds have completely changed her mood/anxiety and sleep for the better. But the burnout exhaustion doesn’t move forward. Still can’t process reading.

As hard as it is, progress isn’t linear and it is still relatively early in recovery.

What support, including therapies, is in the EHCP?

Is audio input tolerated e.g. text to speech software?

Has DD had bloods taken recently? In particular vitamin D, B12 and thyroid? Deficiencies can exacerbate existing exhaustion and treating any deficiencies can help. Similar with thyroid, if hypo and hyperthyroidism is an issue, treatment can help. How is DD’s eating?

What support, including therapies, is in the EHCP? Fucking council😡

Because she was diagnosed 3 months before she fell out of school they say there’s no health needs. I’m sick of fighting them.

She sees an NhS psychologist once a fortnight. She’s too exhausted to see anyone else.

Are you appealing the EHCP? Therapies are educational provision, not health, so should be in F, not G.

The support needs adapting so very gradually over time DD can get to a place where she can engage. For many, this is via means that don’t rely on verbal communication so much. What are DD’s interests even if she can’t manage them much right now?

How does DD cope with interaction that isn’t F2F? For example, virtual, phone, via gaming, letters/gifts?

I’d not thought of appealing, but yeah l do think we need it. How long do you have to appeal?

All interaction exhausts her. She needs to limit it as much as possible. She doesn’t text apart from family and 3 friends. She games, but not online. We’ve asked the school to slow down, they’re pretty good tbh.

Intersts: Jellycat toys and Taylor Swift😖

Speech therapy and social stories are included as part of EHCP. It’s a lovely lovely school. So calm with supported placement for UCAS. She’s desperate to go. It’s so frustrating for her and us.

You have 2 months from the date the EHCP was finalised or 1 month from the date of the mediation certificate. If you are still within the timescales, you should appeal. The EHCP definitely needs improving. If you no longer have the right of appeal, you should request an early review.

If SALT is detailed, specified and quantified in F, the LA must still ensure the provision is received even if DD can’t attend school.

Have a look at Spectrum Space boxes. They are tailored to DD’s interests and needs, and work very well for DC in burnout or those with PDA. They don’t have to involve any interaction.

When DD is ready, there are things to tap into the gaming interest. For example, Mindjam. It can start as just someone to play alongside. Some never move beyond this.

If DD hasn’t tried speech to text software, it is worth trying. Many find it isn’t anywhere near as exhausting for them.

We’re out of date for appeal. I’ll look into Speech to Text l don’t know it existed.

The speech therapy is specific ‘Sliding in Technique?’

That Soectrum Soace looks good. But she’s got 9 GCSE’s. I’m not sure they go up to A level? It looks good though.

Spectrum Space boxes are completely bespoke to the child/young person’s needs and interests. They can work at any level. The content doesn’t even have to be traditional academic content.

There is a lot of assistive technology out there. Is there not any in the EHCP? Has DD had an IT assessment?

The SALT needs to say more than ‘Sliding-in Technique’. If it is detailed, specified and quantified in F send one of IPSEA’s model letter to the LA. If that doesn’t work, post back here for next steps.

You can request an early review using one of IPSEA’s model letters. However, the LA doesn’t have to agree. If they refuse there’s no right of appeal. You would have to wait for the AR or request a reassessment of needs (which normally does have the right of appeal if refused, but if there has been a needs assessment within the last 6 months there isn’t).