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Dipping my toes in

(15 Posts)
coffeeisnectar Sun 27-Mar-16 16:03:44

My DD hasn''t got a diagnosis. But after posting about her elsewhere a lovely poster called sleeponeday suggested I drop in here. So here I am.

DD is 10. Since the age of 4 (when she STILL wasn't sleeping through at night) I went to the Doctors at breaking point. Got told it was a phase. As was her smashing her head off the wooden floor when upset. I persevered until she was 5 and finally begged for a referral to CAMHS. This was in Scotland. CAMHS agreed she showed definite signs of ASD but due to a) her age and b) being a girl it was hard to be sure and they continued to see her weekly doing art sessions, therapy and counselling.

A year later we moved to Dorset and a referral from the Scottish team was sent here. However, they spoke with me for 30 minutes and then sent a letter to me saying 'there's nothing wrong with her'. While in the appointment DD lined up every single toy in a straight line, in height order down the room.

She is now 10 and we've been referred back to CAMHS, referred from there to paediatrics who said she needed to see CAMHS so back we sent who have said no, it's paediatrics. By this point I'm starting to lose the plot a little.

DD has meltdowns every day. She comes home from school and either goes into one for a couple of hours or she spins upside down on the chair or goes into the other room and runs the skateboard back and forth while making repetitive noises.

She won't have wet food with dry food. They need to be separate. She can't have labels in her clothes and won't wear anything tight.

She hates change, thrives on routine. Her room is immaculate. She knows where everything is. She's a neat freak. She has facial tics when stressed. She talks incessantly. She can't sit still. She still doesn't bloody sleep. There is more but I'm so used to it now it seems normal to me but its only when you mention it to someone else and you get the raised eyebrows and the 'oh no, my child doesn't do that' that you think 'right, add it to the list!'

She has an older sister who I've parented the same. She's fine. Just a normal teen. I'm waiting to go onto the obligatory parenting course as well but the waiting list is as long as every other waiting list.

Any thoughts?

Ineedmorepatience Sun 27-Mar-16 16:31:03

Ok, it certainly sounds like some of your Dd's issues are outside the "normal" range.

Whoever it was who told you girls were harder to diagnose was right, they are often very good at masking their difficulties especially outside the house at school etc!

Do school have any concerns! Not that it means anything even if they dont! My Dd's school couldnt see any issues even when she had a dx! (Diagnosis).

I would recommend keeping a diary and making some notes about the things that your Dd struggles with, what upsets her and how you manage her behaviour!

Then read Tony Attwoods Complete Guide to Aspergers and match up any of your notes to pages in the book (I stuck post its all over my copy with real examples of how it fitted Dd3).

Also read about the triad of impairments and do the same with that!

Then read up on strategies which people have found useful for living with people with Asd and try some, it cant do any harm and might make a huge difference, it did for us.

Also read about PDA because demand avoidance often sits alongside Asd and its extremely challenging to live with.

Knowledge is power, the more you know the more likely it will be that you will be able to push for a dx if you still think she needs one.

Good luck with the parenting course, remember unless it us autism specific the strategies wont work if your Dd has Asd, keep loads of notes while you are trying strategies recommended to you especially if they have a negative effect!

Sorry that was so long and Good luck flowers

tartanterror Sun 27-Mar-16 17:02:23

We have had a similar run-around from various different professionals. At 3 we were told there was absolutely no issues with communication. The school didn't notice problems with academic work so didn't get involved to push things along. Eventually we were helped with a referral by Speech & Language therapists who we had seen about eating. Maybe you could try self referring to them in your area? If you strike lucky they may be able to help navigate the maze. Good luck

Ineedmorepatience Sun 27-Mar-16 17:13:55

Good idea tartan, if you can self refer to speech and language ask for a social communication assessment smile

yippeekiyay2 Sun 27-Mar-16 17:46:38

Hi, it is more difficult to get a dx for girls for asd - my dd is 7 we went to gp about her being assessed nearly a year ago and the process is only about halfway through now. I hope you are able to get a good SALT - the one we saw said not sure about dd having asd (Aspergers) because she could was talking to her and can be creativehmm but the paediatrician we saw was v good and she has also been seen by one of the autism specialists for the county who seems to believe she is...if school see the situation they may be able to push the referral along? Also the dx pathway for autism should be on your local authority website so that should give a definitive answer on who is the first point of call - you could then print that off and take it with you to push them a bit? Good luck X

coffeeisnectar Sun 27-Mar-16 18:54:05

Thanks for the replies. Sorry I've not been back, DD has been horrendous today. I'm drained!

We've seen the school paed and they are referring to SALT. School have been incredibly supportive, both her form teacher and her SENCO have helped her with the ELSA group and also allowing her to work outside the classroom when the noise level becomes too much and also letting her sit in at either lunch or play time so she has that time to de-stress from all the noise and chaos of the other kids.

She has issues with friendships. She actually shoved another child into the road last week in front of a car. He had been taunting her all the way down the hill asking her if she had taken her 'anger pills' (little shit) and pushing her into bushes. She snapped. it was reported to the school by the car driver, luckily no-one was hurt. The boy did admit that he provoked her.

She has very few friends and she gets angry with them, probably because she doesn't understand their games or why they want to do things. She has little interest in the running about games in the playground but likes structured activities and she does swimming, cross country and netball.

I have no idea why she's in such a difficult mood today but roll on bedtime. I've had enough.

Ineedmorepatience Sun 27-Mar-16 19:23:16

Its probably the come down from school to home! Its very difficult.

Its good that school are supportive, ask them to keep a diary too so that when the SALT and paed send paperwork they have some real examples of when and why she has struggled.

On bad days, try reducing demands to an absolute minimum, lots of us on here have had some success with that as a strategy!

Try to get a break too is you can flowers

coffeeisnectar Sun 27-Mar-16 23:07:47

I do keep things as simple as possible in terms of asking her to do things ie one thing at a time. She can't cope with more than that. I will talk to school when they go back as I need to talk about the bullying aspect anyway.

tartanterror Mon 28-Mar-16 20:22:50

Have you got a safe place in your house that you all agree that she an retreat to when it all gets too much? Maybe with a favoured blanket/cushion/teddy? DS chose his bed before I heard this was a good thing to do. We also do a quiet time at bedtime where we do puzzles/I read to him etc and we have a nice time. I didn't appreciate how much better that would make the rest of the day. Could be worth a go - even if it's the last thing you feel like doing at the end of the day....

Some practical things that worked for us when we were given the runaround

DLA - it's needs based so you don't need a diagnosis, Google celebra guide if you need help completing it (it's mammoth and you need specifics)

The DLA helped us to go private for assessment and diagnosis. It has changed nothing in terms of how much school see/believe but it has given us confidence and ammunition to fight

lives in the balance website - the CPS model has enabled us to see our children differently and solve problems together

Your daughter is likely dealing with 10x the stress, anxiety and sensory dysregulation most kids her age. She needs you to fight her corner. I know this is so hard, some days things are so crazy here I don't know which way is up and all I can see is a list of negatives...so it's really important to look after your own needs - put your oxygen mask on first brewcake

coffeeisnectar Mon 28-Mar-16 21:38:43

Thank you for your replies. I'm so touched everyone has taken time to come and offer support and guidance.

We do have a place DD goes when she's stressed. She has a rocking chair plus bean bags with a canopy over the top. She has a box of special things which she chose to go in so she can sit and have time to calm down. She quite often refuses to go there though when we suggest it.

Today has been another full on day, three in a row. Normally I get a day 'off' in between the rough days but she's stressing hugely over our trip tomorrow and trying to prevent her packing the entire house for two overnights has been somewhat trying!

I have applied for and acquired PIP for myself. I wasn't sure if I could get DLA for DD. She's capable of taking herself to and from school etc and although I still need to assist with personal care to a degree (hair washing etc) she doesn't need a lot of extra care. Just more time spent trying to bring her back down.

Frusso Fri 01-Apr-16 08:50:32

Apply for dla, I haven't applied for one of my Dds despite her having asd, but she doesn't require talking down or safe spots or personal care that your dd does - it is these that add up
presuming your in the same county as you mention in op Do you have swifts input?

coffeeisnectar Fri 01-Apr-16 11:35:23

Thank you, I'll look into that for her.

coffeeisnectar Wed 06-Apr-16 11:32:47

Unbelievably, paediatrics called me on Monday to say that although they have sent out an appointment for September, they have a cancellation this week and would I like it?

So this morning we saw a Dr and he, after talking to me and DD, have referred for an assessment for ASD etc.

Another waiting list, but one step further along the road. And at least we didn't have to wait until September for the first meeting!

Ineedmorepatience Wed 06-Apr-16 11:36:36

Good news coffee flowers

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