ASD in daughter

(12 Posts)
JumpingJetFlash Fri 02-Dec-16 15:52:11

Hi. Just having a bad day so feeling a bit sad/ having a moan sorry. It's probably also long and waffle sorry.

I feel like we are going round and round in circles with regards to my daughters diagnosis of ASD. It's been 18 months and it's no closer and then today I discovered that our LA has changed it so that there is no longer a SALT pathway to diagnosis. We've been on this pathway since March, including a long and very draining initial assessment meeting with SALT in August that was supposed to be followed up by an observation in school this term.

We are now being told that a) they've lost the GARS questionnaires we handed in 6 months ago so they need redoing and b) she might be observed in Jan and this will then be sent back to Paed. This is the same Paed that met her for 5 mins in Jan, asked her a very simple question about Gretel from Hansel and Gretel (she's a gifted reader so could answer the Q as we've worked on character emotion Qs) and then said she might be but he wasn't giving a diagnosis and closed her case ☹️️

I'm the mean time she gets sadder and more negative about herself and doesn't understand why she's 'different' to other girls. Added to this she got a dysgraphia diagnosis in April and that's causing her anxiety too.

I'm so worried about secondary school and really feel that without a formal diagnosis, she won't get the extra support she needs ☹️️ It doesn't help that through this process, I have been smacked in the face with just how on the spectrum I am and I feel guilty that her struggles are my fault (irrational I know but still)

I'm sorry this is so long and not sure how anyone can help but needed a sympathetic ear/eye without being dismissed.

Thanks if you read this far grin

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tartanterror Fri 02-Dec-16 16:53:54

So sorry jumping. It's a long path. From the first time a SALT raised an eyebrow at the way he responded to a pop up toy, to formal diagnosis took us 5 years with a lot of detours along the way. You will get there. Stick with it - you are definitely not on your own.

As an aside our DS (7) has/had issues with dysgraphia. The school presented it as a handwriting problem. His written output didn't match verbal. I took him to an OT and we were advised to use all sorts of funny pens/equipment. On a whim I recently started him on the MagicLink handwriting problem. Suddenly I have a DS who runs down in the morning to practice his handwriting!! We went to OT because we assumed that the school had tried to tech him but not been able..... it seems they hadn't. He is delighted and it's given him so much confidence- I think he thought it was something wrong with him. Now he's motivated as he knows he can practice and do better. Might be worth a look?

tartanterror Fri 02-Dec-16 16:55:44

PS don't feel guilty about your genes. It's not like any of us have a choice. Just do the best you can (well that's what I tell myself!!)

tartanterror Fri 02-Dec-16 16:59:53

Pps when you get to the point where a professional is going to write a report make sure you get them t give an opinion on secondary transition and supports (ie to describe the school environment that would meet her needs). You can then use this on your LA

JumpingJetFlash Fri 02-Dec-16 17:16:33

Hi Tartanterror

Thanks for your reply and not telling me to belt up 😃 Sorry that it took you so long to get a diagnosis ☹️️ We had decided not to proceed after the Paed appointment until the lady from SALT who had been working with her over a 6 week period basically told us to try again with the SALT pathway as in her words 'girls often don't present in the way that paediatricians look for in one appointment'

Great tip about getting them to include info about secondary schools within the report. I hadn't thought of that. I'll have a look at that handwriting scheme too thanks 😃

OP’s posts: |
knittingwithnettles Fri 02-Dec-16 20:25:03

Ds2 wasn't formally diagnosed with ASD until a year after school flagged up his difficulties in class, and in the meantime they put in support as if he had ASD.

So Nurture Group in break
Social skills activities
Special Interest Club (his was Lego)
breaking down instructions into smaller chunks, being aware that he might not understand a task, although not communicate that he did not understand
no pressure on him for presentation, or poor presentation
being aware that he found it difficult to join in groups at break, and needed structured play/lunch time supervisor to look out for him getting into difficulties
other things were buddying up (find a child that would buddy at lunch and sit next to him) Friendship bench

obviously everyone is different, but school should have a range of support for children with anxiety, poor social skills whether he has a diagnosis or not. All they need is to be aware what is the underlying problem, that she is not being obstructive or non communicative due to defiance but it could be a range of things..sensory defensive, lack of theory of mind (ie imaginative play could be there, but doesn't understand why others aren't doing things her way, her games, her rules)

I recommend you read Tony Attwood and get plenty of insight, and read up as many strategies as you can to support her at home as well. All a diagnosis will bring is rubberstamping, you will probably have to do most of the input anyway, sad to say, not much will be forthcoming from the NHS. Ds2 has excellent speech - witty funny empathetic, but is very literal and gets very fixed ideas about how things should be.

I also possibly have Asperger's or dyspraxia, and it has made it so much easier to understand ds2. The sensory stuff is the big thing that I really took a long time to find out about..have you looked into Sensory "Diet" (not about food!) and dysregulation? Out of Synch Child is a very good book. "Social Stories" is another thing to google. I've found they really really help and they help me too in adult life..talking through things in advance (or to oneself mentally) to process stressful or new activities. I also have very poor executive functioning despite excellent memory, cannot organise things but do them in a sort of instinctive muddled way - this is another thing I recognise in ds2. Other people with ASD may be very ordered and love lists, and like things to be done just so..that is not me or ds2, we are quite laid back in many ways. So strengths and weaknesses are very individual.

Hope you can get the diagnosis soon as is possible, but just wanted you to know that there is a lot of thinking and reflecting and researching that you can do now.

knittingwithnettles Fri 02-Dec-16 20:30:14

OT has been so helpful too, a pity that ds2 didn't even see one until he was 14!!!! angry so that is worth getting a GP referral for - it will take ages, but if she has problems with her environment, is fussy about food, finds difficult to sleep, settle down, hates being touched, or craves deep pressure all the time, those are all OT issues (I thought OT's were for people with mobility problems or broken had no idea of the scope) Ds2 has terrible handwriting, we have been advised to get him touchtyping as soon as possible..there are all sorts of touchtyping programmes out there for children, again OT will give you a list. Ds does TTRS but that is targeted at dyslexic students (ds2 has dyslexia too)

tartanterror Fri 02-Dec-16 20:33:00

knitting - what a wonderful school! I'm envious. Ours is very well meaning but a bit off the mark. It's made me realise how many of our issues are actually down to the school's approach and not all about DS' ASD. I'm 100% focussed on being able to choose a secondary. so am going back to anyone we've every seen to ask for supporting letters

We didn't chase the diagnosis which is why it was long. The benefit was that by the time we went for it the service had loads of evidence. Referral was in Feb. Diagnosis in early May - paperwork took much longer :/

JumpingJetFlash Sat 03-Dec-16 15:35:59

Hi Knittingwithnettles thanks for the reply!

School have put some bits in place such as weekly sessions with a TA in which she can talk about issues and also to work on social skills. I think part of the problem for them is that she manages to hold most of her issues together until she mets me or her Dad at the school gate and then it all pours out. They do try and help her though and are very open to us popping on or emailing them about issues she has told us about (and they have been good regarding acting as a scribe/ getting her AT so she type most of her work now to help reduce the issues around her dysgraphia). She does a mix of TTRS and Nessy Fingers in an attempt to maintain enthusiasm and whilst she isn’t speedy, she is quicker than when handwriting

I have read and watched quite a lot of the Tony Attwood stuff, in fact it was that that confirmed to me that she (and I) are both quite definitely on the spectrum. I’m not really expecting much to change, we’ll keep parenting the way we do to try and help her the best we can. I’m just hoping that a diagnosis will entitle her to extra support when she moves up to Secondary iyswim.

We’ve been to a sensory workshop day for parents where they showed us quite a lot of options for helping her but I think I definitely need to revisit this and just think through again. We are lucky that she was also offered a 6 week multi therapy group- it was from this that SALT recommended we pursue a diagnosis which is why now being told that route is closed 9 months later is so frustrating. Sadly DD is not a listing, ordered kind of girl but a swamp me with as many soft toys and latest fad doll/ tv character kind of kid - leaving a trail of destruction in her wake lol - very much the opposite of me lol.

I’m feeling less defeated today but I really appreciate you taking the time to respond.

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JumpingJetFlash Sat 03-Dec-16 15:39:01

Hi tartanterror

We have found a lovely secondary school that we think would be really good for her - small and very nurturing with a real focus on supporting children who need that extra help pastorally/ with organisation. In theory, we have a good chance of getting in but I will definitely be looking for anything to help to increase our chances.

Hope that you get into a school that is right for your son too

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Ekorre Sun 04-Dec-16 08:14:50

It might be worth pursuing a diagnosis for yourself. It can make professionals take a bit more notice due to genetic links etc.

JumpingJetFlash Sun 04-Dec-16 17:28:34

Hadn't thought of that Ekorre - I do always mention it when they ask if anyone else has history of but never sure that it doesn't sound like I'm grasping at straws

OP’s posts: |

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