What's the benefit of an Autism Diagnosis?

[Jammeroo]

Hello

I'm increasingly convinced my daughter might be autistic. I'm obviously not an expert but the more I learn about autism and girls the more I am convinced. She is 14 and has always been a bit different and at times hard work. As a young child very reactive, hours long meltdowns, sensitive to sounds and texture, needed A LOT of attention, fixed mindset, tummy issues we eventually realised were anxiety related. When she is really upset she was inconsolable and copes by biting and scratching herself and wringing her hands. When this started happening we went to the doctors and she said it was behavioural so we just thought we needed to put in clearer boundaries. When the hormones kicked and she had more autonomy we were worried about the self harming and got her a therapist who she sees regularly and helps her.

However, she is very sociable, has lots of individual friends but struggles to find herself comfortable as part of a group. Gets away with a lot because she is very funny but doesn't get social cues even the bloody obvious ones ie doesn't know when to stop, didnt get personal space when younger, and has and either full on or full off energy. People can get annoyed by her because of that. She has quirks like can't start a new task unless the time has a 5 or a 0 and can't have the volume on an uneven number.

She is very smart and doing really well at school expect for maths. She can do it but lockdown affected her confidence and it's like she just shut down when it came to maths as it caused her so much anxiety. She was assessd for dyslexia and discalcula but as she is really good at language and reading they said her profile was spikey. She has made progress with support. She finds a colour filter helpful but the ophthalmologist said she doesn't have visual stress and her reading rate is very good.

I've seen a few tik toks ( I know, I know) that have been so relatable but then I saw the vanish autism advert and it was pretty much exactly like my daughter. A few externals (her friends and mine) have made comments about being on the Spectrum too.

Anyway, as she is getting supported learning, we support her out of school and have helped her manage her reactions, she speaks to a counsellor, doing well in school...what benefit would there be of us persuing a diagnosis?

I'd be worried I would put pressure on an already stretched NHS and there are other families who are struggling more than us. We are not struggling at all really. I feel we have a been on a journey and understand our daughter a lot more and how she works.

If she were to get a diagnosis, what would change?

I wouldn’t give a moment’s thought to other families who might need the NHS more than you. I have been living outside the U.K. since 2017 and the way people are accepting the NHS being decimated is horrifying. It is not your fault that the Tories have done this. You deserve support, as does your daughter.

You need to know, though, that the way the state gatekeeps on neurodivergent support is by the power of the guilt trip. You will have someone talking shit about labelling your child. You will be questioned as a parent. You will have to fight to get any sort of referral. This is how they get you off the list and invisible in the statistics.

Talk to your DD’s school. Is she already under SENCO support? Then take their advice on seeking a diagnosis via the state but honestly, if you can afford it, I’d go private at the same time. It will help you better understand your DD, and crucially it will help her better understand herself.

It's that fight that i am trying to figure out if it's worth it as she seems to be coping well with the adjustments we have made to our parenting and support from a private counseller and educational support for her maths.

Would getting a diagnosis label and stigmatise her? Make her more self conscious? I agree it might help her understand her situation though.

I know of girls in her primary school who had obvious signs of autism and their parents were told they weren't autistic only for them to fight to get reassessed and then finally diagnosed. These were girls who were struggling so so badly. So I doubt they would entertain her.

You say she’s coping well, but you described a lot of anxiety in your first post - has that abated? Does she know of your suspicions?

A lot of what society classes as autism “symptoms” is actually autistic distress. It’s good if she is in an environment where she feels secure at the moment but environments change. Only you and she can make that decision, but I would always think it’s better to know yourself

My DD was diagnosed last year at 15. I never thought a diagnosis would help and didn’t want to be one of those parents who are bitched about for wanting labels for a “perfectly normal” child. After lockdown she started to struggle more at school and her levels of anxiety increased so we went ahead with the assessment.
For her, the diagnosis has been really helpful. She can let herself off doing things she’d have previously made herself do (at the expense of her mental health). Her main reaction was “thank goodness I’m not just a drama queen”.

For us as a family, it temporarily made things much worse. She, in her teenage autistic head, thinks that the whole world should now be being quiet and sensitive to her autism. She gets angry when we make the slightest noise cooking tea etc. It does seem to be settling down a bit now.
I’d say go for it. She certainly feels it’s beneficial to know what she is how she is.
The Vanish advert makes me cry every time I see it. So like our family, the effect it has on her parents and sister. My DD watched it though and couldn’t get over the sister stealing the hoodie, couldn’t understand why she would do that and why it would be hard to live with the autistic girl. “Well they’re making her late” “well she needs to play the drums to regulate herself” “well they’re talking too much in the car, and it’s early in the morning”. Genuinely couldn’t see anyone else’s point of view!

@Fifteenhundred so relatable what you said about how your teen DD took the vanish ad. I haven't shown my teen DD the ad but she won't relate to the emotions.

We are on the pathway and will remain there upward of two years. So I am going private (will also take NHS as well when it arrives).

Private is booked for June - there's even a wait of 3-4 months privately here.

My advice would be do get a diagnosis. I always thought DD was quirky but spectrum and copes and I'm NT (at least I think I am ) so there isn't a case of two ND people clashing which I can see is a problem in other families. The genetics come from her dad and he isn't in our lives so it's almost like I can counter balance her just by being me.

Education has failed her - she is completely see through as far as any teacher that has taught her invisible - if she speaks up, she should put her hand up more, she knows her stuff but doesn't bother writing it down -
Cried every year when class sang happy birthday. Avoids PE. Has never broken a single rule and has no behaviour points. No one knows her name or pronounces it correctly (it's a standard English name) and she doesn't correct.
The list goes on.
Not one single teacher understood this to be autism.

Not one.

She had some school counselling due to her dad's antics and in session 1, the NHS nurse said Autism.

This gave her a sigh of relief about herself and I thought it was enough to acknowledge exactly as you have expressed in OP.

However, the anxieties kept growing and during GCSE year, it has all gone to pot - she is hair pulling, self harmed and is an absolute beast to live with. She doesn't eat properly. She is 100% all of the Christine McGuiness documentary.

A diagnosis gives her protection in the rest of her education and whilst it may then cause discrimination in some areas of employment, they wouldn't be the right arenas for her anyway.

I'll try to remember to come back in June after her assessment.