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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To wonder is there benefit in getting a label for my DS?

176 replies

Labelicious · 29/10/2021 07:51

When my DS started school, he had such problems in the first term that by the end of it his teacher was recommending a referral for a “processing disorder.” However, he was young for his year which could have explained it, was responding very badly to their strategies (stickers etc) (both teacher and headmaster were inexperienced) and when he turned 5, things improved significantly. They never suggested similar after the first term and all of his teachers since then (4 years on) say he’s progressing well.
However, there are things that make me wonder. He’s a total daydreamer and often doesn’t hear his name being called (I was the same as a kid). His little just started school brother has himself fully dressed in the morning while eldest DS might have managed to pull off his pyjama top. He has often struggled with transitions eg going out on day trips - home is his favourite place. He can struggle socially (like me). He goes through intense interests where he develops encyclopaedic knowledge (again like me). He really struggles to go to sleep at night. I was reading a thread last night which says emotional disregulation is a symptom of ADHD - he can be an anxious child, if something goes badly he can get very very upset and says he hates himself, and he absolutely hates if he “fails” at something or feels he hasn’t done well to the extent he will avoid doing it (eg I think this is why he has never been a fan of doing sport with his class).
My DH would never consent to DS being assessed and having a “label”. When his teachers 4 years ago were suggesting an issue I did some reading and felt like ADD (inattentive) described me in so many ways. I mean, I probably don’t have it, but (through luck and circumstance) I’m the most senior lawyer in my organisation and I could NEVER have got there with that label - who would hire a lawyer with inattentive ADD!
In my DH’s family, a sister and niece have diagnosed ASD and/or ADHD, brother suspected. My DH disapproved of my niece getting diagnosed. The adults have never really held down a job. I guess with my traits and my DH’s family traits it’s possible my eldest DC has something. My youngest is now very delayed talking and is similar in some ways to my eldest at that age (eg hates loud noises).
Should I forcefully insist my DS gets assessed? As I said the school are not currently suggesting it although his current teacher told me he told her he can’t sleep at night thinking about things, and hates himself (he couldn’t identify any of his (many)qualities during an exercise where he they had to name good things about themselves).
(Namechanged as identifying details)

OP posts:
Bythemillpond · 29/10/2021 17:07

I just want to add that for years there was a strong objection to diagnosing and medicalising adhd, because it was perceived as giving them drugs to make them fit it

I fully agree that people shouldn’t have to fit in, but there’s now decades of solid research showing that kids who are correctly medicated for adhd have better learning outcomes than those who are not. The medicines gives them at fighting chance to get an education

Agree It isn’t about fitting in it, it is about being able to do the things other people take for granted. To be able to think clearly and get things done

TopCatsTopHat · 29/10/2021 17:24

Self knowledge is not a bad thing. Give him an understanding of how his mind works and he will see many examples of how similar people to him have succeeded and done well.
Currently his patterns of behaviour attract criticism maybe (not paying attention when his name is called etc) when that is detached from blame he doesn't need to internalise that criticism and can see it as part of a wider picture of strengths and weaknesses.
Lee Mack and Rory Bremner both really successful comedians with a dh Dan's that's just off the top of my head. Let him know his own mind then he can start to recognise his worth.

Toomanyradishes · 29/10/2021 17:35

I have a friend who has autism, her parents didnt push for a diagnosis because they didnt want her to have a 'label' she said without a diagnosis the labels she got were 'thick' 'lazy' 'awkward' she said getting a diagnosis as an adult was a massive boost to her mental health because she can move past these negative ideas people had about her and find some proper coping mechanisms.

MrsBobDylan · 29/10/2021 20:58

If your dh can take such a pompous stance on 'labelling' and so ignorantly disapprove of his nieces diagnosis, then your ds must be absolutely fine. Lucky you guys.

Good luck with not 'pathologising' op, I've a feeling you'll need it.

MrsBobDylan · 29/10/2021 21:00

Also, you do know it's not an actual label like the one Paddington wore?

I only ask because if you had a diagnosis of ADHD, you don't have to declare it at every job interview. It's a diagnosis not a criminal record.

HerRoyalNotness · 29/10/2021 21:03

My D.C. felt nothing but relief when they got their diagnosis. They could understand why they thought and acted like they did. They already had an education plan so we were able to add to that and get them started on meds

agedmother · 30/10/2021 10:58

OP's son needs centering in this conversation. None of us know what's going on, or the nature or causes of his distress, despite some fairly heroic assumptions being made here. We don't know whether or not a neurobiological issue is in play; the starting point is that it sounds as though he may need some support/help? Health professionals could explore with him and further advise OP?

Yamayo · 30/10/2021 11:06

An adult friend of mine has just been diagnosed with ASD.
She said it was bittersweet- she is utterly relieved and feels like pieces of a jigsaw falling into place- she now understands herself.
She's also very angry that she didn't know sooner.

Percie · 30/10/2021 11:29

@Yamayo I recognise the anger - I spent a few weeks moving between relief, anger and regret. I hope your friend feels more settled as she gets used to the new knowledge.

Lokdok · 30/10/2021 11:49

He needs assessment for an EHCP. It will help him immeasurably and he’ll get the support he needs. Yes, push for it.

agedmother · 30/10/2021 12:05

Is anyone getting an EHCP for ADHD? Wow! Round here it takes sustained legal intervention to get one for kids with both ADHD and ASD with very significant functional needs (eg. 1-2-1 support needed to participate in mainstream setting).

CatsArePeople · 30/10/2021 12:05

Your DH needs to stop thinking of neurodivergence as a negative thing. Is he scared of what people will think?

Maybe he's worried that a diagnosis will negatively effect future career options.

AnotherName456 · 30/10/2021 12:41

@CatsArePeople

Your DH needs to stop thinking of neurodivergence as a negative thing. Is he scared of what people will think?

Maybe he's worried that a diagnosis will negatively effect future career options.

What about the negative effects of not having a diagnosis and how that can effect your entire life?
Punxsutawney · 30/10/2021 12:43

Maybe he's worried that a diagnosis will negatively effect future career options.

I think what might negatively effect future career options more than a diagnosis of ADHD or ASD.... is complex mental health difficulties, caused by a lack of diagnosis in the first place.

We are living this at the moment. And it's heartbreaking to watch your child give up with life and not want to be here anymore. When an earlier diagnosis, support and intervention could have made such a difference.

Newsorrynewagain · 30/10/2021 12:54

You also have to think of your child. There are so many adults now being diagnosed and feeling a sense of relief, as they have struggled and can finally understand why.

Sirzy · 30/10/2021 13:01

To get an ehcp needs assessment you need to show that the child has additional needs AND may need extra support at school via an ehcp. From what the OP has posted I think the second part at least wokld be hard to prove

IveGotASongThatllGetOnYNerves · 30/10/2021 13:05

A diagnosis doesn't give anyone a condition they don't have.
What it does do is give them access to resources that can help them with things that they struggle with that can be difficult and often impossible to access without that diagnosis.

Avoiding the diagnosis doesn't make the difficulties go away. It just makes life harder for them.

Yamayo · 30/10/2021 14:50

*A diagnosis doesn't give anyone a condition they don't have.
What it does do is give them access to resources that can help them with things that they struggle with that can be difficult and often impossible to access without that diagnosis.

Avoiding the diagnosis doesn't make the difficulties go away. It just makes life harder for them.*

This. 100%.

My DC is very low functioning. He will never have an independent life and in a way it is easier to handle than a borderline diagnosis. He struggles less than a child on the spectrum whose parents desperately want him to be 'normal'.

There is no compassion in rejecting an assessment because you want to ostrich a situation and would rather let a child struggle rather than support them in accessing the help they need- help that might be crucial in them achieving a fulfilling life.

TopCatsTopHat · 30/10/2021 15:01

@CatsArePeople

Your DH needs to stop thinking of neurodivergence as a negative thing. Is he scared of what people will think?

Maybe he's worried that a diagnosis will negatively effect future career options.

No one is compelled to reveal the information.
Labelicious · 30/10/2021 16:06

I hear what people are saying. However there was a professional on the thread earlier who said that it is not a myth that there is a stigma around ADHD/ASD and if not handled carefully, a diagnosis could negatively affect self-esteem. So I don’t think I’m being foolish in considering all potential ramifications. If a person is struggling in social situations, for example, how does a diagnosis actually help?

OP posts:
Tal45 · 30/10/2021 16:18

I haven't read the whole thread so sorry if repeating. It's not a label OP, it's a diagnosis. Naughty is a label, stupid is a label, ASD or ADHD is a diagnosis.

To me everything you said in your first post suggests ASD. The daydreamer/in another world/not hearing, the difficulty socially, the difficulty with transitions, his knowledge of certain subjects - it's textbook ASD as far as I'm concerned. He is likely to become more and more 'different' as he gets older and having a diagnosis can really help him to understand why. It's absolutely vital IMO - mine was diagnosed just before secondary school, that's the age where it suddenly started to become more and more obvious.

I doubt you have inattentive ADD OP, you just wouldn't be able to have got where you are if you did, it would be impossible for you to hold the amount of information you need to know in your head. I would suspect that you have ASD and having a fantastic memory and great knowledge has served you well and will allow you to be a fantastic role model for your ds - proof of what can be achieved - and able to support him in whatever he wants to do.

Clocktopus · 30/10/2021 16:33

However there was a professional on the thread earlier who said that it is not a myth that there is a stigma around ADHD/ASD and if not handled carefully, a diagnosis could negatively affect self-esteem

A professional you say? And have you checked their credentials? Because this is the internet, I could claim to be a train driver and you'd have no way to prove whether I am or not. Choo-choo...

If a person is struggling in social situations, for example, how does a diagnosis actually help?

I was able to use my son's diagnosis to get an EHCP for him. As part of his EHCP he gets specific teaching around social situations, social skills, and social cues. His support worker in school role plays social scenarios with him, helps him develop an emotional "toolbox" for use across a range of situations, and helps him understand and recognise his trigger points for when he can't cope in any given situation so he can exit before he reaches the lack of control stage.

An ASD diagnosis massively improved his self-esteem. He was 8yo and convinced that he was stupid, weird, useless, etc and that all of his problems were his own fault. The diagnosis and assessment report were life changing for him as we were able to know why he behaved in certain ways and- crucially- what support he needed in order to help him progress.

AnotherName456 · 30/10/2021 16:34

@Labelicious

I hear what people are saying. However there was a professional on the thread earlier who said that it is not a myth that there is a stigma around ADHD/ASD and if not handled carefully, a diagnosis could negatively affect self-esteem. So I don’t think I’m being foolish in considering all potential ramifications. If a person is struggling in social situations, for example, how does a diagnosis actually help?
So they can understand who they are. Why on earth would a diagnosis be negative? If I was Autistic, I would want to know.
PugInTheHouse · 30/10/2021 16:35

This really irritates me actually, it's not a label it's a diagnosis!

Having a diagnosis helps in so many ways, it helps people to understand why someone behaves in a certain way and also you can access help, medication and many groups.

People calling ADHD/ASD a label is what causes stigma around it.

Yamayo · 30/10/2021 16:43

By not giving him this diagnosis, not only are you failing to give him the support they might need, but you might create massive self-esteem issues for that poor child.

He will always think something is wrong with him. This is what you are telling him by burying your head in the sand because you are so desperate for him to be 'normal'.
The lack of support for this child's mental well-being is unbelievable.