New and hoping to meet others in similar situation.. AS daughter..

[gingernutty44]

Hi all

I am Mum to a 9 year old girl diagnosed with AS 4 years ago. We have been ticking along in that time, hence I have never particularly looked for advice or support (or maybe I have been in denial). We have adapted our lives to accommodate her anxieties and need for routine, but this is just what we do and it has worked. She is in year 4 of a mainstream school, but since October 2013, things have started to fall apart!

I am not sure what the catalyst was, but now i pretty much have a school refuser who is suffering major anxieties about school and as the head teacher told me yesterday, an AS child with a very poor attendance record!!
Tbh, i would rather try and ease my daughters mental state and anxieties than worry about her attendance at this time, but there you go!

I do believe that school is getting harder and she does acknowledge this and when you see her in the cloakroom alongside other 9 year olds especially the girls, she is worlds apart from them, in her own little universe and they are becoming so much more sophisticated than her. It does not help that because of her problems with social interaction and communication, she has no real friends to speak of and says she often spends playtime wandering around on her own, or being told to go away by other girls.

Looking back, she got good support in Reception and Year 1, but things have rapidly declined since then to a point where she has been getting no support but school think she is coping. I must admit, since February after finally seeing the state she was in, the SENCO has been great and has been arranging things to try and ease the anxieties. She seems to get through the day once we have got through the sobbing and walked her in to the class, but it all rapidly goes downhill when it gets to bedtime and the next morning. CAMHS can't help her as they say she need to see a paediatrician because of her AS and I am desperately trying to get an Ed Pysch assessment of her to give us an indication of what we can do for her in her education moving forward and possibly try for a Statement although this process will not start before the end of 2014 we have been told, if at all.

All i know is, I have a very scared and anxious little girl who will no doubt have to face up to many things in her life that will cause her anxiety, but I wondered if anyone else was going through anything similar?

I have two boys with AS who had similar issues.

CAMHS has not been an awful lot of help too us but if you want to go this route ask for a re-referral from your GP stressing that you want help with the anxiety (which is CAMHS remit) rather than the AS.

The most support for us has come from school and I think this is where I would put my energies. You can apply for a statement rather than waiting for school if you think that is what she needs. There are template letters on the IPSEA website. Even if not successful first time we found it does mobilise the school into taking action and the EP visiting.

Hi ginger and welcome to the board.

I have a Dd who has Asd but presents like Aspergers. She is 11 and finds school extremely difficult. She masks her issues at school and holds it together until she gets home. Or at least out of the school gate.

She has had a mixture of support throughout school and we are currently waiting to see if she will get a statement to support her through secondary.

She loses the first term of every new year but this year has literally only just settled due to teachers lacking understanding, a senco who hasnt done much to support her and her anxiety over SATs and the move to secondary.

We have found it very difficult to get support for her anxiety and no one takes her school difficulties seriously. She has 9 days of complete school refusal this year where I havent been able to get her out of the house and many, many more where I have struggled with her.

I dont force her to go anymore because I am trying to preserve her mental health. If she cant cope then I let her stay at home to rest and regroup. Coping everyday with all the sensory overload and the social difficulties.

I find support groups very helpful and this board has saved us from going round the bend.

Keep coming on here for support and advice it really is the best source of help and information.

Good luck

That should have said Coping everyday with all the sensory overload and the social difficulties is exhausting and much more demanding on people with As than it is for NT people.

Ineed is right - support and understanding are essential; thank goodness for the NAS and Facebook. DS2 has major anxiety as part of his ASD profile and yes, we too, got turned away by both CAMHS and the pediatrician - they did that ping-pong act.

Two things that have helped us - someone recommended adapted CBT, which has been a life-line. The school gave us best practice - meetings every three weeks, daily at one point!, and were open to all suggestions as they were struggling with DS2. Can your DD's school pinpoint when she finds things most difficult and come up with a way of alleviating some of the stressors - someone she likes meeting her at the school gate? A safe place to go and a system to access it? Attaching a TA temporarily, if that will make her feel more secure?

The autumn term 2013 was horrendous - two terms on, life is OK to good. Keep going. Keep asking for help. Look after yourself, too - I found DS's stress unbearable at times; it permeated everything.

"CAMHS can't help her as they say she need to see a paediatrician because of her AS and I am desperately trying to get an Ed Pysch assessment of her to give us an indication of what we can do for her in her education moving forward and possibly try for a Statement although this process will not start before the end of 2014 we have been told, if at all".

Your DD has probably managed to mask her needs up till now but there comes a point where this no longer works. Also her situation at school is clearly showing me that her additional needs there are simply not being met now (hence you all ending up in the situation you are in).

Who told you that btw re no application before the end of 2014?. I think whoever told you that is being deliberately obtuse here and is certainly not acting in your DDs best interests.

Making a statement app now will or at least should trigger an EP going into school. You need to make this application asap, you will need to write to the Chief Education Officer at your LEA and wait six weeks for their reply (mark that date on your calendar).

If you are wondering what to write use IPSEA's website www.ipsea.org.uk, there are model letters you can use. Make the application asap, do not delay this any longer!!!.

I agree with atilla get a parental request in yourself. Dont wait for school to do it!

We did have to go to tribunal to get Dd3 assessed but the LA were ordered to do a statutory assessment based on the fact that she has a disability and that her school have put additional support into place and its not working.

Ask on here if you need help, there is always someone around who can help and yes IPSEA will help too.

Good luck

I just wanted to say thank you for all the responses you have given me. I think sometimes you do feel that you are the only one going through it and that no one can understand, but this just proves that others do understand,are going through very similar issues and can also provide some much needed advice & support!

My DD did not make it to school yesterday as she completely lost it and was screaming and crying from the moment she woke up, refusing to eat any breakfast and running away when she saw her uniform. I know maybe I should have tried harder to get her in, but as Ineed said, i care more about preserving her mental health. I do have an appt with the SENCO first thing tomorrow to try and arrange to get her back in tomorrow afternoon with someone to greet her and hopefully stay with her (not sure this will happen but i can ask). Our GP is contacting the paediatrician & CAMHS again and I am going to investigate the IPSEA website so thank you so much for your recommendations on this.
I am trying to stay strong but I have to admit, this can really make you feel totally hopeless and that you are going around in circles, but from now on, I am definitely going to seek all the support that I can.

Thank you again and no doubt I will be back here again in the coming days/ weeks/months.

The SENCO at Dd3's school is really against us "allowing" Dd3 to school refuse, she once sent me a text saying "Get her into school no matter what!"

I disagree with her because they dont support Dd3 well enough in school and completely miss her anxiety most of the time. I know if my child is not in the right frame of mind to deal with school on any particular day and I stand my ground now.

Remember ginger you know your Dd better than anyone and dont let anyone try to tell you different.

Good luck

Your poor DD, she must be having a tough time. My DD has different issues (ADHD, but also with autistic traits), and although overall she enjoys school (she is very sociable, even though she struggles with friendships), she went through a phase of school refusal for several months, which I found incredibly stressful. It was at about the same age as your DD, at the beginning of year 5. As you say, expectations at school start to get greater, and girls in particular suddenly seem to mature, and it can all become too much for a child who is different in any way.

It sounds as if you are doing the right thing in trying to get more advice and help, and going to your GP for a referral. DD's school were actually quite helpful: they gave her (and me) a lot of support and also a sort of mentor at school, an adult who she met with every day at first and who she could also go to at any time when things were getting too much for her. This mentor has stayed with her, and DD still goes to her occasionally when she is overwhelmed.

Sorry I can't be of more help, I do feel for you and your DD though.