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.

The detail doesn’t make it even slightly less of a huge concern and one you should have actively pursued therapy for as a matter of urgency

She’s happy.
She can get a bit anxious but that has massively improved over the years.

She loves being at home and we have a very safe, calm home.

She tries to study but this is one of her downfalls.
She has always tried hard but just cannot seem to either focus or memorise information very well but then not everyone is academic so I think is there a problem or is she just not academic.

So is she currently at college, attending classes and on track?

No unfortunately not.
I am a single parent. I do work FT but after bills I don’t have much left.

That is absolutely not normal behaviour for a 14 year old OP, it really sounds like the behaviour of a child with ASD.

DS never hand flapped, never walked on tip toes, never lined stuff up, never spun wheels, was ok with eye contact, understood sarcasm, he was very bright and always very well behaved at school. He was diagnosed at 10 when a teacher went on a course and just had an inkling - but could easily have flown completely under the radar.

The diagnosis has been amazing for him, we all understand him better now (including him) and when he applied for degree apprenticeships some places allowed him the interview questions in advance. As a result he is now doing a degree apprenticeship that he absolutely loves and will hopefully have a great job at the end of it.

It's not surprising she doesn't want to go to the doctors, it sounds like her anxiety around that sort of thing is huge (typical ASD I'd say, and anxiety is frequently comorbid). Have you said you'll go with her and do the talking? That might be what she needs to enable her to get there.

She does attend college but she’s not on track.

She struggles with attendance and getting her work done on time but her behaviour is and always has been perfect.

If her behaviour was poor I think she would have flagged up more support.

The other issue was due to Covid there were so many absences and anxiety with returning to school and so her behaviour was similar to loads of kids.
Lots of them had poor attendance.

Apparently colleges are still full of teens who have anxiety or poor attendance.

Her attendance in college is way better than it was at school and so we’re moving in the right direction.

I have a child with ADHD and kids who are NT.

I have learned that ND is super diverse and different people tick different criteria.

My child with ADHD was active “ants in his pants” but had an August birthday so school said it was immaturity. He got on well with his peers and coped with academics so school did not suggest investigating. I guess they had their hands full with the kind of ADHD where kids are attacking others and throwing chairs etc

He is super chilled. He didn’t go through terrible twos and threenager stage. He’s now 19 and there’s less than a handful of times when we’ve argued during his teens years. I can’t remember him being ever slamming his door after an argument with me.

He is a massive procrastinator. It’s hard to tell if it’s because it’s his ADHD or it’s an anxiety thing. I have anxiety and have tried to not pass down my behaviour but he’s learned to do things like set multiple alarms, research unfamiliar locations etc so he’s not late etc so does well.

He had sensory issues with clothes but cutting labels out helped. To this day he’s never regularly worn jeans because of it but school trousers, cargos and joggers are fine which is a relief.

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

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.

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.

That’s what I don’t understand is how someone can be autistic if they don’t have the typical autistic traits.

When I have googled it I think yes she definitely has this and that but definitely does not have this or that.
And it says they need to have a certain amount of the traits to be given a diagnosis.

And yes she knows that I will go with her.
She struggles to do things without me but part of this is probably me being overprotective and so I am working on helping her with this.

I have said we can write everything down and I will speak and she said she’ll think about it.
I don’t know whether to just book it.

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.

A couple of posters have said about travel/immigration and I never knew this was a thing.

This gives me concern for her but it’s also very unfair.
Some of the greatest minds in the world are autistic.

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?

No she goes more than 50% of the time.
So it definitely could be worse.

As you say I guess I won’t lose anything by pursuing it.

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.

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.

I don’t know honestly.

But I believe everyone in England has to assess by the same standards.
I think it’s like a checklist that all professionals use but it’s slightly different to different countries.

I think going private just gets it done much quicker.

please stop talking about labels. It’s not a label, it’s a deep understanding and acceptance of myself.

I definitely have an issue with labels and being stuck in a box.
I’m not sure where it comes from but I’m definitely going to make an effort to change my mindset.

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.

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 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.

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.

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.

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..