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?

I had my 14 Yr old Dd assessed last year via Zoom. She showed the same anxiety and patterns and was diagnosed as high functioning ASD (what used to be called Aspergers). This was a private assessment though.

Her input was about an hour on Zoom with a Dr in SALT.

SALT?

She refuses to talk to anyone. I keep chipping away. But the refusal is part of the whole thing. I think it’s anxiety or control based.

How did you get the referral?

Watching thread.
I'm similarly worried about my ds 12.
I've been feeling like i've left things late and worried I'll be judged for not seeking help sooner.
Worried I've let ds down by trying to deal with things myself and sweep issues under the carpet.
Thank you OP for this thread.

What would the benefit be of a diagnosis? Genuine question - you could be describing my niece (of similar age) and she has never been assessed either.

@Noshowwithoutpunch

Watching thread. I'm similarly worried about my ds 12. I've been feeling like i've left things late and worried I'll be judged for not seeking help sooner. Worried I've let ds down by trying to deal with things myself and sweep issues under the carpet. Thank you OP for this thread.

Ds also becomes angry when I mention asking for help.

I think it would take the pressure off her at school. She dreads being asked a question.

I think it might make sense of her weird anxieties. I get some if it, but it’s everything. If we knew for certain I’d be clear about how to deal with it ( and so would she)

Dd shuts down when l talk about help. She refuses to discuss it. It’s a bloody nightmare

@ArseInTheCoOpWindow

SALT?

She refuses to talk to anyone. I keep chipping away. But the refusal is part of the whole thing. I think it’s anxiety or control based.

Speech and Language Therapist.

I think you need to consider what benefits a diagnosis would give her.

It might mean that she has adjustments made at school, or it might not, but I think going forward it might be an idea to have something on paper for when it comes to employment.

A friend of mine from school managed to bump along fine for his entire life, got a job in the records department of a university which was ideal for him as he worked alone.
The department had a reshuffle and he had to go and work out front with the public. It went badly and he almost lost his job. At this point he went to the doctor and was diagnosed with ASD. If he'd had the diagnosis sooner I'm sure that the uni would have made reasonable adjustments for him.

Yes, this is my thinking. University and after. It needs to be formalised for that.

SALT = Speech and language therapist. I went privately as the school was overwhelmed plus Covid. They make allowances for her needs now ie she can arrive quietly but on time at the late desk rather than jostle through hordes of pupils

I’ve looked at private but they are 2k!

My dd is 20. I work in education and have known for a long time she has autism, she displayed very similar behaviour as your dd and her biggest issue by far is anxiety.
This we managed to get under control, no thanks to cahms who were absolutely useless!!
She had some private therapy and I did lots of stuff with her at home and by the time she hit her teens she was generally ok and by 18/19 doing so really well, off enjoying uni, working part time, lots of friends etc
Unfortunately long covid has hit her hard and her anxiety is once again off the scale.

I never felt the need to seek a diagnosis and op please don't feel guilty, autism is notoriously hard to spot and diagnose in girls as they are generally very good at masking their symptoms!

I don’t feel guilty. I just don’t know how to get her help!

A diagnosis makes such a difference- it’s like being given a road map.

You’ve been told she’ll come along with her headphones - fine. Go with that. You will be doing part of the assessment anyway. And the professionals may well know what to do - it won’t be the first time they’ve encountered an autistic teen (if she is) who is resistant to being assessed.

Sounds so similar to my daughter, also 15, who has just been diagnosed with autism. We paid for a private assessment, which was in two parts - one v lengthy interview with me and her dad, and a separate interview with her - plus discussions with the school. She agreed to the assessment but barely said anything to the psychologist - but he was able to draw a lot of sound conclusions from the little she did say! I was there during her interview - might be worth talking to a psychologist to see if they are happy to meet her with you and with her headphones on?

Also felt/feel very guilty for not having followed it up much earlier, when we first had concerns, but also tried to ignore the issues/convince myself that she was okay really, as she masks so well in many situations - and feel relieved now we do have a diagnosis.

Honestly I could have written this post although recently DD has been more open to new things but when we think about it so much of our lives have been adapted to accommodate her that I don’t think we notice anymore. She still has meltdowns though and major food issues. She actually did get offered an ASD assessment but declined to go. She said that she would really struggle with a diagnosis and it would make her feel different and she didn’t want that. We had to respect her decision, however frustrating it was! She does know, I think. She watches atypical and she says things to me like ‘you know how much I hate eye contact’ and ‘I’m socially awkward’ and ‘I don’t know how to relate to other people’ but she is making friends now and managed reasonably well outside of the house but you should see the number of texts I get and the amount of anxiety at home. I think some ASD girls struggle more during puberty and we may be finding some kind of balance now. If you’d like to chat then you can message me. I have some professional experience with ASD as well.

@ArseInTheCoOpWindow your DD sounds very much like my eldest (now 20)

She was assessed and diagnosed ASD at 17 after years of anxiety, school refusal, self harm, poor risk assessment etc. We only got seen by CAHMs after a couple of years of spiralling behaviour and only with the input of other agencies. It then took a while to get them to agree to assess her.
Have you looked into PDA? My area didn't recognise it at the time DD was assessed although it very much describes her.

@Moonlaserbearwolf the benefit for my DD would have been some protection from her secondary who managed her out with threats of prosecution for absence. Had she had a diagnosis more quickly they would have had to support...I think. Its also given her some protection at work when she's been unable to attend through anxiety and panic attacks.

On a practical level DDs diagnosis, all we were given was a print out and some details of parent support groups.

I have a son with similar issues, he's 12 and I have always suspected ASD. He displays the same type of behaviours as your daughter to some extent and these are clearly stemming from his anxiety. With him, rather than seek a diagnosis I have done some reading up (and I did previously work in a profession where I worked with children with ASD and was involved in diagnosis) and talked to him openly about his behaviours and that some may be typical of ASD. He is a bright inquisitive boy and is interested in what makes people tick. He finds it helpful to categorise things. We've said that in the future he could seek diagnosis if he wants to but for now I feel it is helping him just to know there are other people out there like him. We bought him the book Can You See Me? co-written by a teenager with ASD for his birthday last week and found it a bit upsetting, he said it was just too relatable and he couldn't read it just yet! I'm reading it now to help me try to understand things from his point of view. Not sure how helpful this approach is, and I do sometimes worry that we should have asked for help sooner, but equally I'm not sure what would be gained really. I don't see a huge amount of support for these children going on in school but I may be being unfair.

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.

Yes, this is what l feel. She drives me nuts sometimes as she can be so seemingly bloody awkward. But if it’s ASD it makes it easier to understand.

But she’s so lovely too❤️ She was an unusually smiley, sociable baby. Loved being round people.

She’s less like that now. She prefers to be online. But she does have good friends, who are all introverts too. But not interested in meeting with them outside school really.

I can recommend Daphne Keen as she is also an nhs consultant her assessments are not disputed. She charges £1000.
www.daphnekeen.co.uk/what-you-can-expect-me-to-charge/

Do you know you can apply for dla without a diagnosis and use that to pay for an assessment.

Moorlander, that’s really interesting, but she won’t talk about it or discuss it.

Ugh

She's that bit older than my son of course and I think that does make a difference , I imagine the combination of the teenage hormones with the anxiety makes it all much more difficult. I do very much feel for you.