Desperate - Help! (UK)

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My youngest child who is 7 is awaiting her first appointment for assessment for Asperger's. We are in the UK and it is with the NHS, who are notoriously slow, and we have been told that we will have to wait at least 18 weeks even to get an initial appointment.

In the meantime her behaviour is making me ill. She is so bad I cannot tell you and it appears to be escalating, what was medium anxiety at bedtime is now full blown screaming, obsessive questions shouted from the landing irrespective of who else she is disturbing, waking up shaking in the middle of the night/early hours from stress, diarrhoea in the middle of the night from stress and this is all after a full day of meltdowns, more obsessive and aggressive questioning, phobias, rudeness etc. etc. No-one but me will do for her, so if her dad tries to step in and console her it makes things worse but I cannot do it any more, I have hit the overload button and I am struggling to recover from illness caused by the stress of her behaviour. She also frequently prevents us going out for the children to socialise with other children (we home educate) because she gets so stressed about going out she will have meltdowns and scream that she can't go out, saying I didn't warn her beforehand (I always did) etc. etc.

Myself and my 11 yo are also awaiting assessment for AS and my 7 yo is a very intelligent child who understands how ill it's making me but says she can't help it, she can't stop, she doesn't know how she can be alive from all the stress she feels, she thinks she's a bad person etc.

Today I rang the GP in desperation asking for anxiety medication for her, despite being very sympathetic he said they can't medicate her because it's addictive and she's so small. I hate the idea of medication but the situation is at crisis point now and I don't know what else to do as we can't afford private clinical help, we can't access NHS help without a diagnosis and we have to wait for months on end for that. I will end up in hospital if this continues for much longer. I can't understand why they can't give medication. I was on anxiety medication as a child after some seizures and an abnormal EEG and I wasn't addicted, I know things change but when there is no other option why have they said no? If they had to live through what I am they would realise how desperately we need help and if medication would help her why not? There are so many children out there on medication, and I'm not saying it's ideal it's actually the last thing I want but I don't see any other option. Even the NHS service that will be seeing her asked me what I hoped to get from her obtaining a diagnosis as if there would be no real help or support available even when (and it really will be when as she has all the signs of autism) she's diagnosed.

What can we do?

I just wanted you to know my heart goes out to you. I can only imagine how hard it must be right now. It sounds like your youngest may have OCD in addition to or instead of AS. There are so many issues in your post, I feel overwhelmed just reading it and can't think of one logical place to begin. Is there anything that is working? Scheduling, sensory activities, visual prompts... Also with you suspecting AS for yourself and your 11 y/o, It sounds like you two aren't getting your needs met either. Can you get a therapist's help to support you in dealing with the behaviors while you wait for an assessment in the UK?

Thanks for your reply and for your kind words. If only there was a magic wand. The obsessive questioning is part of Asperger's, as are the meltdowns, I've been researching this for 5 odd years when my eldest was also going through many meltdowns and I first found out about AS (which is when I also realised to my shock that I had it too). The way the NHS works, you literally can't get help unless you have a diagnosis, so no therapy etc.

In desperation I looked on the internet to find out if there was an affordable private psychologist that could diagnose her to enable us to get NHS services (although I have also read that the NHS often refuse to accept private diagnoses). Extremely coincidentally a local one I contacted also works for the NHS and is part of the multi-disciplinary group that do the the assessments. She said it needs to be a multi-disciplinary group that assesses and diagnoses so the child can't be diagnosed by a private psychologist alone. I told her how desperate we were but there's not much she can do to move things quicker for us to be seen.

She does private behavioural therapy but apart from the fact that it's in the evenings it's £75 per hour which is way beyond our finances.

There is no therapy that I know of that we can access. I've been in touch with 2 local SEN helplines today (one for autism) and was told that one doesn't cover our area and that we need a diagnosis to access their services anyway. I've emailed the local authority's respite outreach department in desperation but I don't know if they can help. Even if they can, it doesn't take away my daughter's behaviour issues.

She already has a good routine, and she's way too intelligent for visual prompts and the only sensory activity I've read about is Wilbarger brushing, which apparently has to be done by an expert or it can cause damage and we don't have the money for regular private therapy. She has many sensory issues, tactile, hearing, vestibular etc. (which causes a stairs and escalator phobia).

I get so easily overwhelmed because of having AS myself the screaming is a nightmare and then I have to shout on top to be heard and to try and control her, and my eldest daughter is prevented from doing social activities sometimes because of her sister's behaviour. I'm just so lost.

Yes, the obsessive questioning can be a part of AS, but the anxiety and need to have things just right, said just so, follow a certain pattern can also be overlapping OCD. Even if it is just extreme rigidity in AS, several parents have found the resources for children with OCD to be helpful.



How frustrating.



No, but it might give you a chance to refill your own resources so you can make it through another day.



What part of the routine is working and what isn't?



My DS11 is in the gifted and talented program at school and still uses visual prompts. Its not about intelligence. He has a organizer binder that has his schedule printed out. He has a monthly calendar with the special days like picture day, etc that interrupt his schedule. He has a checklist of what he has to do in the morning, another checklist of what to do in the afternoon. These lists have seemed to help him a lot.



There are so many options. There is a trampoline, a swing (like a hammock that snugs up around the person), exercise ball to sit and balance on, weighted blankets, ball pit, headphones to cancel noise, a tent, fidget toys, soft or textured materials, chewies (chewelry, or tubing), ... thats all I can think of on the spur of the moment.



Screaming over her does not help. I know you feel that is the only way to be heard, but in adds to the intense energy levels and as many people with AS have said, yelling is one of the worst things you can do. You have to be the calm i the storm.

Hi again, she may well have OCD, depending on which psychologist or psychiatrist you speak to OCD either is or isn't part of AS, but it's the treatment that matters I guess rather than where it falls. I'd love to have the resources to help all the problematic behaviours, believe me.

There isn't really a part of her routine that isn't working, it's just that in free play time if she's not bickering with her sister, telling tales on her sister, or screaming at each other, she's following me round demanding answers to things even when you've already answered etc. she just goes nuts whenever she feels like it.

I will speak to her tomorrow (it's night time here now) about whether she'd like any visual prompts.

We already have a trampoline but after one go on it she won't go on it again. She's phobic about lots of things in the garden and avoids going out there to play even though there is lots of great play equipment. She's got loads of soft toys to cuddle and she has her own bedroom so she has her own space if things get too much, plus we have a play room in the conservatory which she can go and read quietly in if she wants.

I know me shouting too isn't the best thing, but I've tried all other options (including rewards and calmness) and my stress is such that I just can't help it any more. I guess it's my own form of meltdown when she's causing me sensory issues. You can't get through to her with normal talking because she just screams so much and goes on and on and on. When you are that pushed to the extreme shouting is sometimes your only outlet no matter how wrong or unhelpful it is.

Sometimes, when a child gets so distressed their sensory issues can explode and create havoc with their emotions and behaviour. Her comfort zone has contracted making her rigid and frustrated - it's probably the same for the whole family at the moment - and she can't face any challenges in her day to day life.

Weight can be soothing for some - I used to use 2 or 3 quilts on the bed for my littlest as she can't sleep without extra weight and thought that was enough but I just made her a weighted blanket and she absolutely loves it. It's a bit of a job to make but there are instructions here http://craftnectar.com/2009/09/03/calmi ... -blankets/. I used a duvet cover instead of buying material as it meant a bit less sewing.
You might like to try something else like heavy blankets to see if she likes it before investing the time and energy, or the money if you need to buy a commercial one - they're very expensive but worth their weight in gold if they work, my daughter had the first full night's sleep under hers in 16 years.

The interesting thing is the sheer weight of them seems too much to even pick up, especially as the one my daughter has is an adult size at over 5 kg (10% of body weight) and the poly beads feel a bit odd at first but once you're under it, it is remarkably comfortable and good just to snuggle in (and I don't need it!). It could make a big difference to how secure your daughter feels in her body if it's the right thing for her. Apparently they work well for dyspraxic children too.

Hi, one study found that about half of children with rapid-onset OCD had PANDAS as the cause (antibodies to strep bacteria), and half the children in the study did not have this as the main cause of their rapid-onset OCD.

http://www.nytimes.com/2005/05/22/magaz ... ewanted=1&

Please note, I am not a parent. I do live life on the spectrum and have had my struggles with OCD which I'll be happy to talk about.

How about taking a page from the states and using the emergency room as initial medical intake? If a doctor sees your daughter face to face, he or she might be more open to anti-anxiety medication, and view it as reasonable part of a balancing act. And maybe if you have video available on your phone record some of your daughter's issues and perhaps just tell your daughter, I'm making a video so we can find you the right kind of help.

There are two types of OCD

The first is an independent condition, the second is a response to extreme anxiety in other conditions, including AS. It is impossible to tell which your daughter may have but they are slightly different and respond to different treatments. Reducing stress in either case can help mitigate the symptoms as a first step but clearly you need professional help to tackle the root cause whichever it is.

Assuming that the extreme questioning is a result of stress (my son does this, too, though it is not nearly as severe.) I would bend over backwards to reduce her stress. I know this is hard to do in your own heightened state, but try to think of what other things other than the garden stress her out. Given that she is home schooled, you might be able to identify a good deal of it. Even if her school work has to suffer a little bit, lower her stress. Reduce the workload if you need to; whatever you need to do, so you can get everyone to calm down.

Part of it may be the social outings for the eldest. She might not like to be dragged along. That is where respite help might help, too, because you could take the eldest and leave the youngest at home , where she feels safe and comfortable.

Try to think about anything other than the trampoline that relaxes her: smells, textures, activities.

I know this isn't as much as help as you need, but I cannot think of anything else until the pros get involved.

Hi, this sounds awful, I really feel for you. It sounds like you are doing everything you can by homeschooling, not easy in the UK! Mainstream school is not always right for every kid.

Im in the UK too and have been working towards a diagnosis with my daughter for nearly a year, we are getting closer but still had no real feedback, just had a few appointments with several months between each, being passed form one place to another and repeating all the same information to everyone I see who then informs me I need to see some one else. I have also battled with them believing me and passing me to the wrong people who then do believe me and pas me back. Each letter/appointment takes months and you feel like you are getting no where. Some people I know have had to have 3 opinions before they get anywhere.

So thats the bad bit, but over the time Ive spent working hard to get a diagnosis I have learnt a few tricks. I realised I had to thin out the info I gave them, concentrate on the main problems that are classic csigns of ASD, dont bombard them with info and little details. Check the criteria for ASD and clearly state which she has. Check you have covered everything and make sure you have interpreted the signs correctly. I wasted time because with my depression I was in no state to explain her symptoms to the first Dr I saw, so I went to the GP and got myself sorted out with antidepressants, this cleared my head enough to give a better presentation to the next Dr I saw, who has now passed me back to the first Dr but with a solid letter to back me up. This has wasted months and I feel like Im starting again as that Dr still needs to refer me to anoter Dr and I will need to go over it all again!

Get yourself some help and make sure you write everything down in bullet points, with clear concise signs of the ASD you believe she has, you have to almost self diagnose to get the diagnosis. At first I felt like I was imagining it and was pushing for somethign that wasnt there and putting my daughter through unnecessary stress but that was my own depression making me think like that. Tablets sorted that and I was able to go in there and give them everything they needed to get a quick reply.

We are also working on getting the stress related colitis sorted with the GP as my daughter has the same problem, but they keep coming back with nothing with the samples and they wont admit it coiuld be stress related.

We have the same problem that we cant access any help organisations without the diagnosis However I have been going to a Jigsaw coffee morning occasionally, it has helped because I feel like they believe me, we can talk about problems and feel like we are not alone. This also helps me to keep going with the appoinments and not keep blaming myself for being a bad mother, and helped me to realise Im not going mad! There is a lot of help out there once the diagnosis is done, here inthe midlands there are seminars for parents, coffee mornings, groups for the kids to get together if they want to, summer camps etc. People can come out to your house if you need help too. You can request this before a diagnosis, we are in the process of having someone assess our needs and offer help. Again everything takes months but thats unavoidable.

With regards to medication, there was a post on here a while ago with alternative medicines and over the counter tablets that have helped with anxiety, sleep and concentration, have a look through some of the parents discussion posts.

I hope you can get some help from the replies and you feel a bit better that there is hope! x

Be very careful with over the counter medications - ASC people often respond more quickly and intensely even to natural remedies and require much smaller doses than normal - last year my daughter begged for something to help her sleep and after no joy with the GP I went to the chemist and they recommended nytol which is suitable for children over 12 (note that anything with valerian in it is not suitable for children). I gave Dot half the recommended dose for her age (16) and it was way too much; she spent all the next day falling asleep and didn't really come round for another full day.

Hi everyone, thank so much for all your input. I'm too exhausted at the moment to respond to everything and I am also in shock.

I just had an out of the blue phone call from a social worker who is coming to see us tomorrow. Apparently the referral unit manageress who I spoke to last week saying that we were desperate for help (I got a bit tearful) and asked if they could prioritise my daughter's assessment, referred us to social services without even telling me letalone asking our permission. Additionally, the social worker informed me that there has been "an anonymous complaint about the screaming", which I assume to be our immediate neighbours as our house is adjoined to one side. It's made me feel awful, because both things were done 'behind my back', and whilst I undertand people would be concerned hearing a child screaming, if only they could have been good neighbours and knocked on our door and asked if everything was OK or something instead of jumping to conclusions that it must be something awful, we would have apologised for the noise and explained that our daughter is awaiting assessment and it's not her fault.

I feel as if we are being presumed guilty of something when I'm the one who's been contacting the GP, helplines, the referral unit etc. asking for help and explaining she screams and has meltdowns and huge anxiety.

I know SS are also supposed to offer support too, but the attitude of the social worker on the phone was quite brusque and I feel as if we are being misjudged even though I've explained my daughter's problems, I'm not hiding anything, I was the one who instigated all our referrals. Not to mention the scare stories about SS out there, it's made me feel shocked and upset.

I am keeping my fingers crossed for you and hope you get as good a social worker as we did when we were referred.


Stay calm and show what you are best at - loving your children and trying to meet all their needs in spite of the difficult circumstances. Admit to difficulties and ask for help but be confident that you are doing your best and that you are a good mother.

Speak to your GP so he is aware of your concerns as an involved but independent professional - SS will almost certainly talk to him/her and if things don't go well your GP may be able to help them see the other side of things; after all you have had support getting the assessment prioritised so he is aware of your situation and just how hard you are working to get things sorted out.

Take care and stay strong

You're so kind! Thanks you for understanding. The GP has had chapter and verse yesterday and today anyway, about just how bad my daughter is, so if SS write to them they should have enough information. I feel so wrung out. There are some good people out there, and WP is great for advice and support, thanks.

You're so kind! Thanks you for understanding. The GP has had chapter and verse yesterday and today anyway, about just how bad my daughter is, so if SS write to them they should have enough information. I feel so wrung out. There are some good people out there, and WP is great for advice and support, thanks.