Potential autism help please

[Workingitout1]

Hello, my DD(11) has always been very sensitive and I have found parenting her hard (she is very loved, but day to day it’s hard - there’s a lot of tears all around) and I find my heart breaking for her on a regular basis. She ‘copes’ with everyday life but finds it very difficult and she’s turned it all in on herself. She also has managed to express that she thinks there’s something ‘wrong’ with her.

I’ve always suspected. I’ve spoken to school head/ SENCO lead etc numerous times but they just say she’s ‘highly sensitive’. I’ve since found out they always say that to others who have gone on to get a diagnosis and they aren’t really set up for it.

shes on a waitlist with the NHS for an autism assessment, although I’m also looking at private as it will take years.

however in the meantime I know very little, so I feel I need to do some research but don’t know where to start. I know it can present differently in females which is I think why she’s flying under the radar, but there is so much literature I don’t know the best place to look. So I’m looking for any books/ websites people have found helpful at this stage. I’m particular for girls who have been good at masking and whose self esteem is impacted by it/ is highly anxious.

secondly, whilst I think understanding will help me work with her better, I’d also love recommendations on what support to put in place for her, can a psychiatrist help? I already try to both modify our family life for her (whilst encouraging and pushing her to try new things), to teach her it’s OK to recognise if she needs downtime and space to decompress etc.

as background, looking at my family there is probably undiagnosed autism in several family members. I know at least 2 are undergoing assessment at the moment, one as an adult and one child. I can’t however speak to them about it.

The Autistic Girls Network could be a good place to start : autisticgirlsnetwork.org they also have a Facebook group which is fairly busy and a great place to get support.

I was going to suggest the Autistic Girks network too.

I would suggest routines so she knows what’s happening, especially at the weekends.

Low demand parenting.

School sound crap, l would request breaks for her to stop her being overwhelmed. And ask for advance notice of seating plans and group work.and request that she is always sat with a friend.

A pyschiatrist can prescribe drugs. A pyschologist supports behaviour and thinking patterns. A pyschologist may be more use.

And at the risk of being demonised allow her to have screens. They help regulate. At 11 mine was playing Minecraft and following YouTubers. At 17 she’s just completed Zelda and Pokemon. She doesn’t do social media.

Would you pay for private diagnosis? If so, which area of the country are you in? If North West I have a recommendation.

Thank you. I’ll have a look at the Autistic Gitls Network. I’m not in the north west but thank you @vinoandbrie .

She’s on the waitlist for NHS assessment, but is also on a waitlist for private as she needs help now and I can’t wait as long as the Dr indicated it would take (years). It’s an in person in depth assessment over several sessions. They want school involved which is frustrating, school see her as a very compliant, highly organised, average achieving child who is sensitive. As she doesn’t cause issues (she just goes quiet - bottles it up until she sees me) she’s not really on their radar.

I haven’t even used the word autism to her. I don’t know quite how to, she has asked for help and to see someone earlier this year, but is also super anxious and when I said have her on a waitlist to speak to someone who may be able to help her work out how her brain and feelings work, and from that we could find strategies that work for her she looked very stressed. She likes to try to fit in/ hide and doesn’t like to feel different.

we are very routined, we talk through plans (she struggles if they change, we try to help her with this). We avoid places where we know there will be ‘shocks’ eg loud bangs, try to not stress about food (although dr has also referred to a paediatrician as she’s got such a limited diet and we are worried about her setting herself up for longer term health issues - she is aware and is making an effort), buy multiple sets of the limited clothes she will wear and try to help her find new ones as she keeps growing! Plenty of soft things like blankets that she can wrap herself in that she seems to find comforting. I’m also trying to teach her that she doesn’t have to be the same as other people eg it’s ok to need downtime. That while FOMO is real, actually just going what works for her is ok. Whilst also trying to gently push her to try new things as it makes her feel more confident. As a result she now has some regular activities she enjoys outside of school which are building her confidence. We didn’t used to be able to do any as she literally needed to be home all weekend. (Cue being told how shit I was as a parent as my child had no ‘activities’ interests when she was younger & we were all just trying to survive) friendships have always been difficult but are becoming more so as she gets older and interactions more complicated. She is very black and white and struggles with the grey complexities that are emerging. Sleep is and has always also been an issue, she wakes early no matter how tired she is.

as is fot every parent I just want to find a way for her to be ok. If she’s not, she will still need help working out how to be in the world in a way that she is happy.

You sound like you are doing great. Even with a diagnosis you would be left in a similar position at home. School is for us where the diagnosis makes a difference. All any parent who has a ND child can do is make adjustments they can to their child’s environment and work on their self esteem. What works for my child isn’t always what works for others so never be disheartened when you try something that works for another family but doesn’t work for yours.

Hi I know you've asked more for info with girls but thoight id comment anyway. My son is 15, known he was autistic since around 6 but only seeked a diagnosis the last couple of years.

Honestly one of the best things I did was actually bring up the subject with my son. He also has low self esteem and high anxiety. School knew autism was highly likely but never took it seriously as like your daughter, he was no bother, very organised and doing fine academically. Its only when he hit year 9 and started having issues regulating emotions that school helped as he lashed out at other pupils and teachers at this point. He went through his whole school life masking so well until he finally exploded.

This was the turning point for me where I sat him down and had a Frank conversation. I just outright asked him if he had ever heard of autism or knew anyone at school who has it. He had heard of it so I sat with him and went through all different kinds of symptoms, how they may present, why etc.....this made the floodgates open. It was like it was a huge relief for him that something explained all these feelings and difficulties he was having. He was the most honest he has ever been with me and we sat and went through all his difficulties and how they could be associated with autism. That was my sons turning point. He felt he had an explanation, and that alone changed his view of himself.

I know it can be different for everyone, but based on my own experience, I would 100% recommend speaking with your daughter about autism being a possibility. It could give her some kind of understanding into her own difficulties. I think when kids know they are struggling, they naturally wants answers just Like an adult would. Autism is a possible answer for your daughter, don't be scared to throw that out there to her as an option. Let her know what you are doing to have this checked out so she knows help is on the way for her, again this was another thing that made a huge differnce to my son 🙂

Thank you @Crunchingleaf -I feel like I’m failing her daily, as I fear I’m coming across as critical when I’m trying to help, but I’m doing my best. School have made some modifications for her ‘sensitivity’ but it’s not enough and she’s very unhappy, and I think with a diagnosis it would force them to have to do more.

@Purpleraiin I’m so glad getting a diagnosis helped your Son. I think one of the reasons I am trying now is to help her know she’s not abnormal (she’s said things about how she’s different and can’t ‘get it’ like others) - that it’s just how she is and that it’s OK. For some reason broaching it seems so hard. But I think if I can do some reading and understand more it may help me bring it up in a way that is sensitive to her.

You need to show school the Autistic Girks Network paper ‘Keeping it all inside’

Presenting with anxiety is one of the main markers of female ASD. It’s often the first diagnosed symptom at a young age. My dd was diagnosed at 9 with anxiety.

I second, third or whatever it is the Autistic Girls Network. I’ve found it really helpful. So has DD.

My DD was diagnosed earlier this year at 18 after years of being told “she’s just anxious”. DD has found the diagnosis helpful in so far as she understands herself a bit more now. She’s at college so whilst she already had an EHCP, they weren’t overly sympathetic, so the diagnosis has been helpful on that front.

You could be describing my DD in your posts to be honest.

We too muddled through, making mistakes along the way, making adjustments and trying not to stress too much about her restricted eating

Thank you all, I really appreciate the time you’ve taken to reply. I feel very alone. My DH thinks we just need to push her to be ‘normal’ and get on with it, and that I’ve ‘Molly coddled’ her and that’s why she ‘cries so easily’. I really haven’t been. I try to give her the softness she needs in a world she finds hard (even though we are very privileged compared to so many in this world). Whist still pushing her to try things / get out there/ be independent. I don’t tolerate bad behaviour (with allowances for when she’s been bottling up eg after school). I talk to her about it being ok to need to decompress each day. We talk about trying new things, even if she then decides it’s not for her. I honestly think she’s fantastic, she’s bright, kind, loving, funny and loyal. And brave. She tries things she finds hard that others find easy, and doesn’t realise how brave she is to do so in the face of her fear. Unfortunately that’s not how she sees herself at all.

ive downloaded ‘keeping it all inside’. I’ve got a train journey tomorrow and should have some time to start reading and mull things over.

@alloalloallo I’m so glad a diagnosis helped. And @ArseInTheCoOpWindow i so hope your DD’s anxiety is getting better.

She sounds very similar to my dd who is almost 10. She's on the waiting list for assessment but you'd never guess she could be autistic unless you knew her very well. She's academic and flies under the radar at school because she doesn't cause a fuss but she has regular meltdowns at home. I also parent her as if she's already been diagnosed to alleviate her anxieties and make sure she's happy, which seems to really help.

I'd recommend the 'parents of autistic girls UK' group if you're on Facebook.

Noooooooo your Dh is so wrong. Pushing her to be NT will result in burnout sooner rather than later. Her brain is wired differently. She needs gentleness and support. And acceptance that she is ND in an NT world.

I would strongly encourage you to pursue the private assessment or look to another private provider that doesn't have such a long waiting list if you can. I was expecting our NHS autism assessment for DS to be an in depth assessment running across several sessions taking in a full history, all symptoms, observing him playing in his natural environment and considering differential diagnoses etc (more like my own ADHD assessment, in fact, which took hours).

It was 20 minutes.

A total joke.

Despite the fact he ticks most of the boxes for autism I was told "he is normal because his eye contact is good" and yes the paediatrician literally said the words "he is normal" to me, like there's something wrong with having ASD. He also said "he is a good boy, he isn't autistic." Like children with ASD are just naughty or something. I was so angry I couldn't even argue with him because I would have just shouted at him.

We waited 3 years for this assessment and it went like that.

If sensory issues are a factor for her then an occupational therapist who specialises in sensory integration might be a good shout. Could help with her emotional regulation.

Can you find evidence in previous school reports of behaviour that can be clearly linked OP? School weren't totally onboard with potential ASD and ADHD for us either (although they acknowledged there was something going on). IME the team assessing were well-used to schools who couldn't see an issue and no stranger to seeing clear patterns in school reports (eg repeated comments about disorganisation or getting distracted for ADHD). They were happy to use that as evidence there were difficulties in school too.

School SEN provision is so underfunded and I’m not saying it’s the case for all, but many are woefully under qualified to deal with SEN issues. They are often teachers picking up some extra responsibility. Had similar experience as DD seen as model pupil in school but meltdowns at home. They don’t seem to appreciate that girls are experts at masking. The book Camouflage by Dr Sara Bargiela is worth a read.
Definitely find another psychologist for the assessment. Check they meet NICE guidelines and the school accept their diagnosis.
They should follow the same process as your LA. That means a Paediatrician. Speech & language therapist and the psychologist do assessments and contribute to the final diagnosis. They should do a school and home visit. It can take a few weeks.
What is a key consideration is that the child had to consent to getting the diagnosis once a certain age. 13? This can be a tricky conversation.
I recommend getting an assessment and if you do get an ASD diagnosis it can help you start to understand the behaviours. Doesn’t make it easier but at least you can start to accept it.
It’s really tough. Hope you make some progress soon.

Thank you all. I’m finding your thoughts so helpful. I mentioned it to a friend a while ago when I broke down and cried. She said she’s been waiting for years for me to say something.

@SkankingWombat school reports just comment on excellent effort made and how organised she is. That she could speak up more in class and be more confident. She just quietly stays under the radar. @gavisconismyfriend i had never even thought of an occupational therapist. It’s pretty much everything - touch, smell, taste, noise. It’s like she just gets overloaded/ feels it 100x more than I do. But it also works in her favour as music and touch can soothe her.

I was your child, but it was a long time ago and autism wasn't that well known about. I think it would have helped me to know that there was a reason I was the way I was, BUT I know I would have struggled if it had been suggested that I wasn't 'normal', so for me I would have needed to be told in such a way that I didn't feel 'less' than other people (I had extremely poor self-esteem). It is only in the past year or so that I have realised I am autistic, and it has been so liberating to know there is a reason why I am the way I am, rather than just being a weirdo, and it has helped me to cope with things much better.
It sounds as if you are doing everything right, so I'm sure you will be able to work this out.

@Workingitout1 In that case I’d say it is definitely worth at least exploring. It might help address the sensory input that she finds overwhelming and also help identify more things that are calming/soothing.