To go for a diagnosis for my child or not?

I’m glad you posted this. I’ve just pushed school to refer my 8yo DD and she is exactly the same. I’m worried about labels - but I’m also concerned about how secondary school will go, and that anxiety pushed me into action I guess.

Can you tell us a bit more about her LD and how/why she accessed extra support and LAs at school? I thought that was only possible if a child has a statement? Has she had any form of testing?

I ask because I'm in a similar situation. I've deliberately avoided getting any testing done because what I see at home has never been mentioned by teachers at school (but could be being masked?) and, my hunch is ADHD. I fear the labelling too and think this could seriously affect self esteem, which has put me off getting tests done.

What on earth does this even mean?

If you read the work of Prof. Tony Attwood on Asperger's syndrome you will find he says that helicopter parenting is extremely common amongst good parents with high functioning autistic children because it is what allows them and enables them to cope.

Not sure if that is what you mean but a I'm pretty sure a neuro-affirming environment is what parents should be providing potentially autistic children.

From Google AI

A neuro-affirming environment is a space (physical, social, or educational) that validates and supports diverse neurological types (like autism, ADHD, dyslexia) by shifting focus from "fixing" differences to accommodating needs, celebrating strengths, and removing societal barriers, fostering inclusion, autonomy, and positive self-identity for neurodivergent individuals. It moves beyond mere tolerance, actively creating supportive structures, using person-centered communication, and reducing sensory overload, ensuring everyone feels valued as their authentic self.

I sometimes hate labels and think way too many times they’re thrown at kids just because they don’t fit into a box and it can be more harmful than helpful in some cases.

She will be labelled regardless so better to be correctly diagnosed and given the right label rather than the weird one who can’t cope, the anxious one, the odd one, the freak one etc.

Also, you go for an assessment not a diagnosis. She needs to be assessed to see if she needs a diagnosis.

As others said, a diagnosis helps with uni support if she wants to go that route or support with employment. Many organisations have disability positive schemes now and with a diagnosis there is some protection in the workplace. It’s really important to understand that neurodiversity in girls manifests itself entirely differently to boys and especially with autism, women and girls are masters at masking so the traits can be far from typical.
A diagnosis can be a relief or some but others a see it as a poison chalice - wanted the assessment but found it difficult when it was confirmed. I’ve seen some girls embrace it but others want to keep it quiet. Depends on the individual.
Thought it would help with secondary school but as we see in the press, they were absolutely shockingly bad.
Go private if you can afford it and get it sorted if your DD consents. ( Which they have to).
Better to get the diagnosis in my opinion but it’s what happens after that’s key…… be prepared to source any support yourself!

Sounds like you’ve created a neuro-affirming environment and response to her. If this is the case, life outside of your home will be harder for her than you realise.

which is no bad thing, but it might cloud your judgement in realising how much she needs acknowledgement and understanding..

You absolutely do not have to tell your employer that you are autistic. Many people don't because they are concerned about discrimination. You also do not have to declare that you are autistic to travel anywhere.

If she is autistic then the chances of her wanting to emigrate to another country away from all the family and everything she knows is likely to be almost zero - unless her special interest is South Korea or something.

Honestly why are people that know jack always spouting shit on these threads.

Having a diagnosis is not a very significant thing. Being autistic however is a very significant thing.

In my experience, diagnosis can only ever help. Even if you never 'use it' as such, it's always there on her record to get additional help if required.

Going through the process as an adult is different and difficult, and also, diagnosis can take years, so starting as soon as possible is best.

As others have said, now she's 17 it needs to be her decision.

I really worry about how few people understand that there are significant impacts of a diagnosis. If you need it to access something specific like medication or extra time in exams then it might balance it out, but so many people throw about getting a diagnosis lightly.

She’s 17. Therefore its her decision and not yours at all whether to pursue a diagnosis
Plus the NHS will never in a month of Sundays get around to this before she turns 18 so she will time out from the CAMH wait list (if they even accept her referral) and have to transfer to the adult list at 18
If she wants to pursue a referral this will realistically only be possible if you are willing and able to pay for it.

I guess it's just a case of no one could possibly have every single possible trait. Many people with ASD might have some sensory issues for example, but they might be sensitive to light or they might be sensitive to sound, or they might be sensitive to tastes or textures - but not necessarily all of them - and you don't have to have sensory issues at all to get a diagnosis. I'm pretty sure they recently took the need to have a special interest off too.

They'll be looking for social communication impairment, black and white thinking, being very literal, talking over someone, not following all social norms, poor eye contact - DS had normal eye contact.....until he got anxious with people he didn't know and then it would drop away.

I wouldn't book it without telling her - by the sounds of it that would completely freak her out. Perhaps instead try saying 'I thought I would book an appointment for the doctors to ask about autism and ADHD'. Then just leave it there for her to process, if she doesn't come back with a NO in the next day or two then go ahead and book it. Tell her when it will be but don't keep bringing it up.

If you're autistic then you're still autistic if you have the diagnosis or you don't have the diagnosis. Having a name for what's going on for you isn't putting you in a box, it's having a name for what's going on for you.

As an AuDHD person, diagnosed in late 40’s, I so desperately wish I’d been diagnosed much earlier in life.

instead, I’ve spent my life isolated, confused, full of self hatred, criticised constantly for my inability to control my emotions, finish a task, have enough motivation to do basic things like pay bills. I spent decades assuming I was just shit.

don’t underestimate the impact that has on mental health and please stop talking about labels. It’s not a label, it’s a deep understanding and acceptance of myself.

This. The part that stands out for me is “regularly self-harms” when struggling with change. She may not have the capacity not to panic when considering going to the GP, but I think you need to support her to do this.

ive been wondering this for a while with mine. We would do it privately. Do private referrals ever come back as NOT being Au or ADHD? I’m a bit concerned that there would be a diagnosis on fairly flimsy terms?

You don’t have anything to lose by going for one but everything to gain.

She is failing college and has self harmed and basically sounds quite unstable.

So pursue any and all avenues.

Sounds quite similar to my DD who has just got an ADHD diagnosis at 23 and it has been really helpful for her. She already had a lot of adjustments as she already had a dyspraxia diagnosis but getting the medication has really improved her quality of life.

I think you need to ask yourself 2 questions. How does my dd feel about this? What would be different for her if she had a diagnosis? Having a diagnosis is a very significant thing, and unless there is something practical she wants from it, it’s not necessary. It’s a life long diagnosis, declarable for travel, insurance and employment. At the age of 17, I’d say this is her choice, not yours to make.

How far off track is she? Is she basically not going?