I think dd 15 may be on the spectrum.

[ArseInTheCoOpWindow]

I’ve suspected it ever since she was born. She was always sort of ‘difficult’ . She would be really well behaved at school and then have constant meltdowns at home. Transitions and change have always been issues. We have been ver y close to seeking help several times.

At age 9 she had bad anxiety, and we realised all her previous behaviours were anxiety based, and everything became much clearer. We had CAHMS but she refused to talk to them.

Fast toward 6 years. Lockdown gave her tremendous anxiety. And it’s getting worse. She won’t eat out unless it’s somewhere she knows. We went on holiday and she refused to eat or drink from the crockery there, and took her own blanket rather than sleep under the duvet.

She hates noise, lights, crowds and gets overwhelmed really easily. She still has her ‘strokey’ rabbits from when she was a baby. Textures are really important to her. She has always refused to wear knitted clothes or anything g with buttons. There’s just so many flags, sensory issues, anxiety, easily overwhelmed. She’s terrified of doing anything wrong at school.

However she point blank refuses to let me take her to the doctors or get an assessment. I think it’s actually she can’t rather than won’t. She has said today she will come if l do all the talking g and she wears her headphones.😢

I just don’t k is what to do. How can she be assessed if she won’t comply?

My Ds got his diagnosis at 15. Goodness knows how he got to that age without it being flagged before, as it is pretty obvious.

It was tough and I won't lie, he hated having an assessment. He now needs a specialist college though, and I think it would be far more difficult to access that, without his diagnosis. So it was worth it.

Unfortunately there is very little support post diagnosis and in our experience, it did not lead to any further help. The paediatrician gave us a handout on local disability charities and discharged him from her care. Even though I pretty much pleaded for more help at that appointment. Two years later and we are still fighting the LA and the NHS for the support he needs.

I would take her with the headphones. It can be a long process to get an NHS diagnosis though. It took 18 months for Ds.

The only person who can tell you whether or not your daughter is on the spectrum is a professional who is trained assess autism. Random people on the Internet are not qualified to do this.

@MyUserNameIsHistory

But yes, a private assessment is eye-wateringly expensive but it was that or a 2 year wait for the NHS.....

@brittleheadgirl - do you mind me asking what kind of things you did at home that helped? We are on the waiting list for therapy via a local charity, but cannot afford private therapy at the moment, given the cost of the assessment.

We worked on her anxiety using books, kept a diary (which we talked about) and had some help with a private therapist that specialised in 'emotional freedom technique' The book she used the most was called 'What to do when you worry too much' it really helped with some of her anxiety. I think it's available still?

We also use the What To Do when You Worry Too Much book, it's fantastic! Maybe a bit young for your daughter but definitely worth a look, or there might be something similar for older children? I found it really helpful as a parent and it's the only thing my son has ever really thanked me for! When we started using it he said 'thanks mum, that's actually really helpful'. Still get happy tears in my eyes thinking about it . Really helped us both to see the anxious thoughts as something separate from him if that makes sense?

It is a long waiting process for assessment. DD had her first meeting on zoom then a face to face, it was 2 years after school referred her that she finally got seen. They saw her based on what school said on the forms they filled in and on the basis of the parent forms we filled in. If she struggles to communicate in the meeting then they will talk to you, it will also highlight some of her social and communication issues.

I would speak to school when she goes back because they still have to put support in place for her even without a diagnosis. School can refer or have a video call with the GP and she can wear her headphones and you talk.

The best thing you can do is try not to just let her sink further into retreat from the world totally by building outwards in small steps that are manageable for her.

Keep on doing the things that are safe things for her or going to the safe places.

Help her with the sensory issues as much as possible by trying wearing ear buds (like calmer earbuds for school or just ones that play music) in less familiar locations. If bright lights are an issue go later in the day when it is less bright or she can wear sunglasses and a hat.

Start building outwards in baby steps by going to new locations that won't have lots of people in a car, she doesn't have to get out, then after a few visits try getting out. Scenic places with nice views are good for this. It is not a problem that she needs her safe place and safe items to come back to and help self regulate afterwards. Maybe having a comfort item to help transition to new environments might help. DD has a keyring version of her favourite soft toy that goes to school in her bag, it provides very subtle reassurance.

It is important to accept that she may not like or want to go to all the places that everyone else does and that is ok.

The question issue is that they are a demand, questions require a timely answer and if you have anxiety about getting it wrong or processing issues that mean you need more time then this can be very difficult. One thing that school could do is give her a question at the end of the lesson before to go home and think about so that she can contribute something if she wants to in the next lesson. She could give her answer directly to the teacher at the beginning of the lesson and the teacher could read it out in the Q&A. It is a simple adjustment for her needs and wouldn't be too difficult for her teachers to do.

Limpsfield Grange School has lots of information and resources on their school website that might be helpful.

limpsfieldgrange.co.uk/autism/information/

The headphones will probably actually help the doctor to see what life is like for her.

The way we sold it to DD is that once she had a diagnosis she could choose if to do anything about it. But if she never had an assessment she'd not have the choice.

It's a long road though and if there's anyway you can afford it then definitely go private

That’s really useful advice.

But she won’t let me tell school. That is an absolute.

DD2 didn't talk much at all. It's one of the things that got her diagnosis. The ADOS is designed to bring out all the little details but it's really clever. DD2 was asked to match some puzzle pieces to a picture. She complied perfectly but then ran out of pieces. The lady had kept some back behind her hands. We could see DD2 weighing up what would be worst - don't finish the task you've been set, or speak to the lady. After what seemed a huge pause, the lady said 'do you need more pieces?' and DD2 said 'yes please'. During the developmental interview (3Di) DD2 didn't talk at all, for the whole 2 hours.

Thank you, that’s really helpful.

Firstly book a GP appointment. You can fo all the talking. It may help to have a list of behaviour concerns you can give to the GP. They will make a referral to camhs (i expect). Its a long wait then usually to get to assessment point. Your dd doesn't need to say anything in the GP appointment. Thats just to get your referral.

Don't worry that if she goes to see someone that she won't talk. That will be picked up on by the GP/specialist too, as it's not very typical behaviour. So I think that's fine, just sort out the referral anyway. Also, the diagnosis isn't the be all and end all. You can still support her until she gets a diagnosis, and it seems that you're keen to help her. If she hates loud noises, then maybe try and keep the TV down as much as possible. If she hates unpredicatbility, try and give her a heads up if anyone's coming to visit or if you plan on heading anywhere. If the lights are an issue, try and get dimmable lights at home, or at least in her room. Importantly, if she tells you that she doesn't want to go somewhere, don't force her (medical appointments aside). Try to accomodate her needs as much as you can.

That’s what we do. It’s so wearing though😫

She eats in her room because she can’t stand the sound of other people eating, she only has fairy lights as lighting.

And the thing that’s really getting me is this.

Her bra is too small and she’s bubbling over everywhere. She doesn’t care. She will not have a new one. She just doesn’t care!

Write down everything since she was a baby that suggests she might be on the spectrum, add to it as things occur to you. Then take it to the GP with her in her headphones - that is exactly how someone with ASD would behave to cope so makes perfect sense for her to do it.

Don't ask her, just buy her a new bra (as similar to the one she wears as possible) and leave it around so she can 'just try it' - hopefully she will find it much more comfortable and will be ok with it then.

Yes, I will do that. It will be a long list l fear…

New things are scary, and create anxiety. Maybe the bra issue isn't a new bra, but getting fitted. I measure DD myself and order the same kind in the new size. It is also an issue of familiar is comforting. DD doesn't care either so long as things feel ok to her.

It is a hard one with her not wanting school to know. DD is the same, but as her parent I have communicated with them because they can keep an eye on her without talking to her about it which means and issues will be picked up. We compromised on the diagnosis as she doesn't want one right now, so we have agreed to wait and if she struggles more then they will complete the report, but she agreed to going to the assessments just in case. Now months later she is more amenable to having a diagnosis. It was hard in her case because as both her Dad and brother have ASD so she is very aware and doesn't want to be treated differently.

It is a delicate issue.

Check if you can self-refer in your area. In Hampshire we can refer directly. When I referred DD2 I wrote everything I could remember. Even stuff like 'insisted on wearing a skirt with 3 buttons because she was 3 years old'. 'Didn't cope with transition from print to cursive writing'. The list was huge and some things on their own sounded really silly/petty. However, when I had my first appointment with CAMHS the man said 'look, I'm meant to have 2 appointments where we discuss the pathway options and explore what makes you think she might have ASD but your form is so detailed that I think we should just skip to the screening questionnaire. He did the questionnaire there and then and said 'yep, she scored really highly, so let's just put her on the list for caseworker allocation.' It still took 2 years to get to assessment, but the diagnosis was really clear. Bear in mind that DD2 was a 'good girl' at school and barely even spoke, let alone caused trouble.

I don’t think it’s that she doesn’t care about the bra, she’s probably worried that the new one won’t fit her well and will be uncomfortable. Neurodivergent people, especially kids, can be really sensitive to the way clothes feel and how tight or comfortable they are. Many also hate change, as it can feel unpredictable. Try and reassure her that you’ll find something that’s comfortable.

Yet again, thank you all so much for your help. You’ve been amazing. It’s really clarified things for me.

She’s refused to speak to doctors or dentists since about the age of 8! I will look into self referral, but I’m just writing it all up now as advised by you all.

Thank you again.

Sorry to hijack the thread, but the book that @brittleheadgirl (and @moorlander) recommend does seem aimed at younger children - does anyone know of a similar book aimed at teenage girls? And has anyone tried noise-reduction ear buds? I hope these might help with my daughter's noise sensitivity, but allow her still to listen to music as a distraction. And finally (for now, at least!), any advice on how to deal with not being able to eat at school/in cafes/with anyone not in the immediate family? Drinks are okay, but as soon as she tries to eat, she feels sick and cannot swallow the food. Thanks!

Could she go home for lunch?

Unfortunately not, we live too far away for her to get home and back. She takes a snack in to eat on the walk home - but that's not ideal.