To be terrified - please help me.

[WhoisRebecca]

Dd, 15, has started taking sertraline after being prescribed it by a private psychiatrist. She took an overdose last year and school refused towards the end of last year.

She is now behaving erratically- running into classrooms at school shouting that she’s going to kill herself, but then laughing - her teachers think she seems very hyper and ‘excited.’ She’s running off when teachers challenge her or swearing at them. She was never like that before this year.

At the weekend she went for a walk and texted a charity helpline, saying she had no bed and was going to jump on the train tracks. We had taken her bed apart because a new double bed was coming on Monday. There was a spare bed upstairs for her. Dd knew this. The police arrived and I was able to show them dd’s location - she had tracking on her phone. They quickly assessed that she had a safe home and did, in fact, have a suitable bed. This was a reaction to being told off because she had bullied a student at school.

She was put in isolation at school for a nasty incident towards another student. She can sometimes be loving and calm. At other times she is very very high and erratic. School had to send her home today. She struggles to attend lessons. I don’t know where to go from here and feel utterly desperate.

I am have limited knowledge of autism but know that sensory overload can cause huge mental stress and also the inability to read social signals can result in feelings of rejection and isolation. Your daughter could be having immense struggles trying to cope with her autism and if so you both need help and support (and love).

HNRTT but if in England then, ASD assessments aside, do you plan to reengage/engage with primary care and NHS acute services or will the private psychiatrist provide the first port of call and manage meds reviews? It might be an idea to ensure you have clear understandings with the psychiatrist about what needs to happen if any behaviours are exceeded and emergencies. Will there be any other therapies provided beyond the prescribed medication?

Hi WhoIsRebecca,

I'm very glad you have a diagnosis and you're starting to get some answers at last. I remember reading your posts and wondered about ASC, especially given your DD's reaction to dismantling her bed and her extreme way of expressing it in words(!), but her situation was so complex that I didn't have much useful to say.

It's true that most ASC issues can't be medicated but now your DD's issues being identified and you can start to pick out which behaviours are sensory, which are reactions to change, which are communication, which are processing delays, etc., it's often possible to manage them. You can recognise what's stopping her from coping in the usual way and adapt her work and life context so it suits her needs a bit better - you'd probably find a different strategy for introducing the new bed and removing the old one, for example. Just those small changes can make a big difference even without medication. Those adaptations could make her feel calmer and safer and less stressed all the time, and that in turn is usually good for improving behaviour and reducing meltdowns.

It's also worth joining local support groups and talking to other parents online or real life - my DS's psychologist told me that other parents were the real experts on managing ASCs! And MumsNet has a Special Needs board where there are some of very experienced Mums of young people with ASCs.

Hi

I'm really pleased for your DD that she got her diagnosis - whilst it's sad that she went this long, believe me, it could be worse. Mine got hers at nearly 17 and it felt like 5 mins later CAMHS was disowning her! We also had almost no hope of any school having the time to test and implement her EHCP, so that's two she's had to drop out of. We still don't really know what her support needs are and are trying to work out coping strategies for when she takes/keeps a job.

Meantime, mine found fluoxetine absolutely useless - seems to be the first port of call round here and most everyone else's child found the same - but sertraline worked well for her for a while. She's now on another. However, the thing I wanted to add is, push for an ADHD assessment too. It's equally easily missed in girls and often does come with autism. Thing is, if you treat the ADHD, the anxiety and depression often decreases too. All these things will help so much. Find your local support group for SEN too, as you'll need a lot of handholding through the inevitable fights with the local authority to get her support.

Its good you have a diagnosis OP. My dd was diagnosed aged 11 just before starting secondary. She had huge meltdowns during lockdown about her schoolwork. When we had the diagnosis and I chatted with her about it, she said itcexplained a lot about how she felt. She understands now about sensory overload. My dd also has slow processing speed and poor working memory so I have to revise things with her often as she forgets them like maths formulas for example. The national autistic society has a great website.Its quite common for girls not to be diagnosed later as they can mask very well.

@Everhopeful thank you. She doesn't have ADHD, we did get her assessed for that too.

When I started sertraline I had severe mood swings. I was elated during the day but crashed every evening with extreme suicidal ideation. It did wonders for my anxiety though.

It can take a while to find an anti depressant that works well for you and the right dose. Her treatment definitely needs to he continuously reviewed.

@gonnabeok and @AmaryllisNightAndDay thank you - I appreciate your thoughts and support too.

@AliveAndSleeping HNRTT but that's what concerns me. Dosage and indeed the correct medication can take some time and requires reviews and I hope the OP has clarity about the process with their private psychiatrist.

We have reviewed the dose since she started and the lower dose seems fine. She has psychotherapy as well now.

@WhoisRebecca I've followed your thread from the outset and just wanted to say you are doing a great job in supporting your DD. She is very lucky to have you fighting her corner. Best of luck in moving forwards now you have a diagnosis.

I'm so glad you managed to get a diagnosis. You can apply for an EHCNA yourself, you don't need to wait for the report. Also, if DD isn't able to attend school in the meantime the LA has a statutory duty to provide alternative provision.

@Everhopeful We also had almost no hope of any school having the time to test and implement her EHCP

If section F is specified and quantified it must be provided. It is the LA who are ultimately responsible so you can complain to them and begin Judicial Review proceedings if necessary. However, this isn't possible if section F is vague and woolly.

I am glad you both have your diagnosis.

My DD's diagnosis came through at a similar age. It does seem that ASD can present very differently in boys vs girls. Add to that everyone is different so will have their own unique perspectives. DD is now 22, at uni and very much happier.

I just wanted to wish you both well.

I’m late to this thread but just read through and the whole time I was willing your daughter not to become another child misdiagnosed with eupd - which happens to a lot of teenage girls with asd and social communication difficulties.

Sometimes with things like the energy drinks, the actual drinking process (people tend to gulp them down) meets a sensory need which helps to calm down. I wondered about this when you mentioned energy drinks.

Im so glad you are getting cbt support for your daughter, it can be so helpful. The other approach to explore is Positive Behavoural Support which can really support young women with asd.

Honestly you sound like such a good mum and I admire your ability to care for and advocate for you daughter

I’m glad she’s better on the lower dose, and I hope she can access the base unit in school that provides support for young people with autism. My son found it very helpful.

It’s such a terrifying thing to go through, the extreme distress of your child. You sound like you’ve been by a great advocate and support for her, whether or not she can see that.

Hi, Sertraline is used routinely in CAMHS. The reason it is not licensed is the same reason most medicines are not licensed for children- it is considered unethical to run trials in children.
This must feel overwhelming at the moment, but just make the focus keeping her safe until you can get proper medical advice from your Psychiatrist who will know the wider context and have assessed the risks. Make sure the house is safe and think about what might keep her calm- maybe an old familiar film or similar. If you feel you can't keep her safe, then A&E is 100% appropriate but it's unlikely to get to that.
You said that problems became evident when friendships became complex and this is very very common in girls with Autism. Things will even more complex now and in combination with exams it might be that she just can't cope at the moment with what is in front of her just now.
In the longer term, if you are thinking Autism is what is underneath her difficulties then simplifying things as much as possible might help- cutting back on subjects might be worth considering, avoiding big social groups or places with lots of sensory stuff happening. Hopefully things you will all feel better after the appointment tomorrow.

She's had the appointment today @FaintlyHopeful and she is autistic- which is such a relief. We have answers. School have just now passed me on to the SENDCO after me asking many times! It seems an actual diagnosis finally holds some weight with school.

Thank you so much for all the support I've had here. It means a lot - there are so many times I've felt like an awful parent.

I've not had time to read the full thread but I'd recommend an urgent review of her meds. My DD went on Fluoxetine at 15 and reacted badly, resulting in psychosis and fairly serious self harm. It's a well known risk with SSRI's and adolescents. She recovered quickly once off them.

@WhoisRebecca
If you use Facebook at all I suggest you join the private group entitled Parenting Mental Health. It's a huge source of advice and support from parents who are coping with similar.

I am going to order some books to read about supporting autistic girls. The psychiatrist recommended some.

@Diverseopinions

Does anybody know, or have experience of, which combination of medications work best for bi polar, please? My son hasn't been diagnosed with the condition, but it is in his family background on the paternal side. He has a diagnosis of autism and is 23. It looks to me as if he sometimes experiences mania, but apparently, it is hard to distinguish this from autistic behaviour. Fortunately, the doctor has taken him off the sertraline. I'm not very sure if the quetiapine is a good idea.

I hope that you get the help you need, OP. I'm sorry that CAMHS were not helpful for you.

You cant really say. Medication of mental health conditions need to be prescribed to suit the particular person in question, taking into account all sorts of personal symptoms and situation. Moreover, different people react differently to different medicines so its often hit and miss and you need to try different medication to find what actually suits you.

OP, you've come a long way since starting this thread and I believe it must have been terrified watching your daughter to go through all of this. Its terrifying enough when you go through something like this yourself as an adult, let alone watching your child experience this. Wishing you all the best, it looks like you are all on the right track now. You've done so well organising all the appointments for your daughter and I believe its not easy in the UK now.

This She also has low cognitive processing speeds and poor working memory.
Sounds exactly like my daughters recent dyslexia diagnosis... could there be other issues going on as well. Poor kid - hope things now improve for her.

I have been lucky as DH has brilliant private health insurance we can access through his work. It doesn't fund the autism assessments, but all other therapy - the psychotherapy and psychiatrist- are funded.

I do feel the gap is widening for those who can't access this, and I've had to be quite pushy to get support. It's not fair.

One thing you might want to look out for your DD is some group social skills therapy and opportunities. While he was in primary school DS attended a social-communications therapy group for children with ASCs in mainstream education, run by specialist speech & language therapists and occupational therapists. They got the children to play games, share "news" with the group, and to talk to each other and reflect on their own issues and solutions. The therapists responded to whatever came up - they did a session on the difference between "no thanks I don't need any help" and "GO AWAY!!!!" In his early teens DS also attended a therapeutic playscheme at the children's hospital in the summer holidays, which helped him control his temper and moderate some of his responses to other children. And he first joined, and then helped out as a mentor, at a local after-school group for kids with social difficulties, which his school pointed him at.

Those were all through the NHS and state education, but what's available varies massively in different areas and just finding out what existed and how to access it seemed like a fulltime job! Talking to other parents locally helped.