To go for a diagnosis for my child or not?

[Toornotto]

I am prepared to get flamed for this and will try and make it as short as possible.

Since my child has been little I have had some people question (including myself) whether she may be autistic or ADHD.

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.

My DD is an absolute angel and I could not wish for a better child, which is probably why I have never felt the need to diagnose her.
But I struggle with guilt of whether I have made her life more difficult.

She is 17 now and so I am wondering if I have left it too late.

Some examples of her traits:
Very sensitive to certain textures - can’t wear certain clothes.
Very sensitive hearing - can hear sounds that I can’t which can be difficult for her.
Suffered with anxiety.
Used to be hyper - almost uncontrollably so but now is almost the opposite.
Struggles with changes - has regularly led to meltdowns, crying and self harming.
Can be impulsive and sensitive.
Loses everything.
Accidentally breaks things.
Disorganised and ‘away with the fairies’
Has never slept a full night.
Has never been to a hairdressers as can’t cope.
And more.

But she does not do:
Hand flapping, stimming, intense focus on interests etc which are regularly seen in autistic individuals.
She also doesn’t interrupt people talking or has difficulty waiting her turn as seen in ADHD individuals.

Inattentive ADHD sounds very similar but that doesn’t account for the struggles with change and sensory difficulties.
It is also odd because how can you go from being so hyper (to the point several people have commented saying she’s ADHD) to late primary school and being the opposite to not being hyper.

AIBU?
YABU - to not get a diagnosis. Go and get one.
YANBU - do not go and get a diagnosis. She does not have traits that fully align with any ND.

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.

@starryeyess that is very true and it’s something I need to remember.

As you and others have said, having the access to the support, even if she doesn’t chose to use it can be very helpful.

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!

I think this is perhaps why I’m thinking more seriously about it now.

She is very happy at home and I sometimes forget how ‘different’ she is because our lifestyle is subconsciously built around her.

But then thinking about uni and jobs etc she’s going to struggle.

I definitely think I’ve kept her in a protective bubble which isn’t going to help her in the long run.

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.

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.

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.

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.

There are some very specific situations where it could be an issue (joining the Armed Forces, emigrating to Australia iirc) but set against that is the likelihood that it could be useful re university and the workplace - which may be actually on the horizon.

I think that poster is saying that I have created this environment at home (which is a good thing) but I am being a bit naive because the rest of the world isn’t like that, so as she becomes older she may struggle without the right support.

I am the parent of a child diagnosed with ADHD and ASD so I guess biased, but I'd say with the UK education system in the state it is, you'd be crackers to attempt year 6 to 7 transition with an undiagnosed child, especially a girl.

They are either autistic with a "label" (hate that word) or autistic without.

At 17 I'd let her decide if she wants to go for an assessment or not and then support her either way. It's her life and her future it will impact, so give her autonomy over it. She's almost an adult.

Don't feel bad, it is really hard to tell with some girls.

I don’t know why she was LD.

I asked a few times but they said she just flagged up as needing a bit of extra support and it doesn’t mean there’s anything officially wrong like dyslexia, just that she needs additional support.
They said it’s a general term.

It was only in parents evenings and things where teachers say that she tends to daydream or look like she’s listening but can be away with the fairies but because she’s always been well behaved and a ‘nice’ child, they have never really flagged it as a problem.

It is incredibly selfish of you not to have pushed for a diagnosis. Adults with undiagnosed ADHD and autism go through years of wondering why they feel different or 'other'. Waiting lists for diagnosis in adults are very long but she can pursue this.

Ask a parent of a child with ASD I am appalled.

You do seem to have passively sat back and ignored your DD’s needs over the years just because you mistrust “labels”. It’s great home is adapted to meet her needs but it sounds like she’s had to navigate every other environment unsupported and not well understood. I’m surprised you didn’t dig deeper when her learning difficulties were identified. How can you not know what they actually are?!

i would keep it on the back burner

And applying for life insurance, medical insurance, travel insurance. Yes it might be offset by medication / extra help, as I said in my earlier posts, but it needs to be considered now as it cannot be removed as a diagnosis later, and an increasing number of people regret pursuing it.

Learning difficulties / learning disability isn’t something which teachers are qualified to assess a student as having, so it’s confusing that they told you she was “classed as having LD” or “had LD.” They can identify particular learning issues and needs and then request SENCO input for a fuller view, or use various techniques to support students with elements of their learning, but they can’t simply declare that a student with no assessment or plan has LD.

When they said all this did you ask to speak to the SENCO? Share your observations on her overall behaviour and ask for their view on whether they’d support an assessment for anything? Considering her poor attendance and that she isn’t achieving well academically, have you spoken with them recently?

I would, not just becaise I think being able to name it and knowing your difficulties are due to ND can be beneficial, but also ADHD excludes you from enlisting in the army in most cases so presumably from being drafted too, I'd get a diagnosis and have her give meds a try (if she's interested) just as protection from that given the current state of the world.

I think your caution does you credit OP. At 17, you may be better off giving guidance to your daughter and helping her navigate the world.

I say this because I feel it is unlikely in the coming years that autism (without a formal diagnosis via the NHS) will not be taken seriously and employers will revert to a more discretionary idea of what they need to accommodate in the workplace. There is increasing skepticism about private diagnostics on autism and indeed ADHD and what will be a mandated adjustment in law. Teaching management skills without expecting adjustments may be vastly more useful.

Who is putting her in a box with a label?
It sounds like you are rather than anyone else.

Austism takes many forms and she has some of the indicators.

Getting a diagnoisis may allow her to understand herself & her emotions better.
It may also help her identify her stressors and ways of managing them.
It may also help with extra accommodations in college and the workplace.

It's up to her what she does with the diagnosis. She make decide to just keep it to herself rather than tell anyone.
It might just help her understand herself better.

I manage someone at work with an autism diagnosis, one of the strongest members of the team in a lot of areas and due to the diagnosis I can make certain accommodations that allow them to work in a way that gets best results for both them and the organisation. I have another people who I suspect is autistic, no diagnosis that I am I aware of, so I'm limited in how I can support in the same way. I do what I can but it's much more difficult.

Teachers very rarely start the conversation with parents.

I have undiagnosed ADHD, and honestly my life would have been so much easier had I have known. I have developed coping techniques, and masked over the years, so I have always appeared more NT to outsiders. It has been exhausting.

Unfortunately it wasn't diagnosed back then (in my late 30s). Everything makes sense now when I see my traits in my child; I didn't know what was wrong before. It isn't anything to be ashamed off op, yes people have their quirks/a few ND traits, but ADHD is abit more than that. Diagnosis gives that bit of help to make life more manageable.

I understand what you’re saying but when I’ve looked up ASD traits she definitely has some of them but definitely doesn’t have others.
I’ve read that they need a certain amount before being diagnosed and everyone has a least one ‘autistic’ trait but that doesn’t mean they’re autistic.

As she got older and I became more familiar with it that I thought perhaps there is something there.
But this coincided with nearly every young person or their parents claiming that they were ND or trans or non-binary etc and there has been this push for everyone to have a label.
The school said about 5 parents a week think their child is ND.

I didn’t want to subconsciously have this need to label my child if she doesn’t actually have it.

They don't need to every single trait, and one size does not fit all with this. It wouldn't do her any harm to just have the assessment? If all else fails, she could get some help with her anxiety?

Have you had a look at the DSM V criteria for autism?

Some of the things you mention, e.g. hand flapping could be examples of repetitive behaviours. It's not the hand flapping specifically, it's the fact it is a repetitive behaviour. I'm autistic - I don't hand flap but I do skin pick.

Have a look at this as it explains it really well

https://www.facebook.com/share/p/16fkU94uGf/

As a late diagnosed autistic, I suffered and was medicated for anxiety for years. I tried CBT. It was only after my diagnosis I raised that the things I was anxious about (rigidity around rules for example) were due to my autism. It's helped me to massively reframe it and be kinder to myself. Likewise, I've always struggled socially and thought I was just a really unlikeable person. Again, turns out it's my autism which means I find social communication difficult.

I was always the high achiever, very well behaved etc but it didn't mean I wasn't struggling and I so wish I'd have known sooner. I can't tell you the relief at knowing why my brain worked the way it does once I was diagnosed.