Being 'labelled'

[Bingalingo]

Just after canvassing opinions really.
DS 3 is currently awaiting a paediatric assessment. His nursery, their SENCo, and our SALT have all identified traits which suggest he may be on the autistic spectrum and he's struggling at nursery - I share these concerns. All the input we have had from nursery, SALT, HV has been really helpful but have only just been referred, so we know it will be many months/years before we see a paediatrician.

MIL has said several times she's really worried DS is going to be labelled.

I want to embrace all the help we can get as I do feel DS struggles (find transitions difficult, often doesn't seem to understand the what's happening, can't communicate his needs). Obviously I don't want him 'labelled' in a negative way, but I do want to try and make sure he has as much support as he needs to thrive and part of that is identifying the areas he find challenging.

What am I missing, why is MIL seeing this as such a negative thing? Is receiving a diagnosis a bad thing? Does it hold children back in the future ?

Hi op, I kinda get where your mil is coming from but I'm not sure I'd have the same reasoning, so my sister, niece and great niece all have autism and LD it's gets worse through the generations, my sister has never been diagnosed as it just wasn't really a thing when she was young (now 60) my niece (early 30) has never had a diagnosis because no one discussed things like that, it was from what I gather seen as shameful, I wonder if your mum has a similar mindset being from that generation?
Personally I think any help you can get for your child is beneficial, just be mindful not to let that label take over his life.

It's tricky. I vaguely remember feeling like this when people raised concerns of ASD about my DC. But now they have a diagnosis (and I've come to realise I'm autistic as well), having a name for what they are experiencing has become so helpful. It's a lens, in a way. An underlying principle to understand their feelings, struggles and behaviour, and a shorthand to explain to other people what's going on for them. I think I really embraced that when I realised I a autistic and started to truly understand that autistic is what I am. That I experience the world the same way as lots of other people that are also autistic, and that there is nothing wrong with me and (most importantly) trying to feel and act neurotypical was what made me feel inadequate all the time. So for me the word is empowering.

My mum says this as I think my daughter has ADD and I’m certain my nephew has ADHD. She says too many kids are labelled now, it doesn’t help anybody and people expect the world to be easy. Despite reasoned argument, she continues on this theme. I have to put it down to generational differences but it really winds me up.

No, labelling him will not hold him back. It will help unlock the doors to get him any support and services he needs.

My son was diagnosed just before lockdown. I will never ever see his diagnosis as a negative thing, I hope that later on, it will help him understand any concerns or questions he has, and means I can fight for anything he needs.

I do think it could be a generational thing as these things weren't discussed or really known about until recently. Society still has a long way to go but we're getting there very slowly. I do wonder if some people push for a label to Justify negative behaviour (I know of any family in particular who keep pushing for several different things, long story but it's clearly down to parenting).

I think some older people see autism etc as something to be denied, some seem to hope that if they ignore it and deny it, the child will 'grow out of it'.

Some are concerned about 'appearances' and don't want others to know there is a child with differences in the family. They view it as shameful.

Very old fashioned views and harmful if you ask me.

The 'label' it's just a diagnosis that helps the child and parents/siblings understand the child and access (eventually) services and support.

Oh and most importantly the diagnosis helps the child understand themselves, so they don't grow up just thinking they're a failed Neurotypical.

I have people in my family with autism and no learning difficulties and the younger ones with diagnoses and help are doing much better than those not recognised till adulthood.
Obviously I don't completely understand as I'm not autistic, but I think growing up "out of sync" affected their mental health more than anything.
Not the autism itself so much as feeling different and not knowing how to be comfortable in the world.
Also in terms of labels in adulthood I work for a company that has a high proportion of people on the spectrum due to the nature of the work.
I would never think to question someone's competence due to an autism label as I have worked with enough people with autism to know like every group there are workers and shysters and everyone in between.
So I think as more people are diagnosed and go in to the world of work it will become like dyslexia to their colleagues, they may know or not and may be interested in what that means or just want to get on with the job. But they won't judge competence on it.

My Ds did not get his autism diagnosis until last year, he was 15 years old.

The damage caused by not getting the diagnosis earlier is huge and he has significant mental health difficulties. I wish there had been the opportunity for earlier diagnosis and intervention for him. I believe we would be in a different place now, if there had been.

Honestly it's not a label but a gateway for acceptance and help - once we understand what was happening to our child everything made sense x

I am currently trying to find a label for my DS. I think that would be more helpful than what we have currently which is ‘can’t focus for long, struggles to get going, struggles to articulate thoughts, easily daunted and at home complete PITA who can’t sit still for a second’.
The label won’t affect their behaviour but it does give a reason for it and open a load of options for dealing with it.

"Labelling" doesn't hold DCs back, it opens doors to services that may help them deal with an NT world and to reach their own potential.

DD is a teen with a label, which she was diagnosed with in senior infants in school, aged 6 (ADHD and ASD at the "Asperger's Syndrome" high functioning end of the spectrum) - resource dept in school know, yes her teachers know (but they always think its a different label, strangely!), but I don't think most other people around her know or are aware - the ones who were told in the past have mostly forgotten I think.

Because the services we were able to access, the work we did as parents, and the kinds of activities she did allowing her to build her skills at her own pace, generally mean that she comes across as someone a little quirky but funny and hardworking. She has a nice group of friends in school, and through sport. And while she will never be the life and soul of the party, she gets on with life and is generally happy.

If we didn't have the label, we wouldn't have researched how to interact with her better, and do things like visual timetables to help her learn organisational skills. We wouldn't have pushed for certain interventions. We would be very very very frustrated with certain traits because we don't understand them (as opposed to occasionally getting somewhat frustrated but understanding the reason so putting up with it or finding another way to deal with the reason she's throwing the ball against the wall constantly rather than just yelling at her to stop it....). Her teachers wouldn't tolerate some things she does in school, that they overlook because they know she needs to do some things, but also know that she will work hard and try generally to behave as they expect. I wouldn't have managed to get a social welfare carers payment for her (which we only sought last year to access a different entitlement for me to take extended parental leave as parents receiving that payment can use their unpaid parental leave until their DC is 16 rather than 11 - but it has been useful to pay for an additional talking therapy we need at the moment).

We don't use "the label" every day, or even every week or every month. The people who need to know, know it. There is some (limited) understanding with some people that there is a reason for how she is (although certain extended family members still refer to her as "so naughty").

Lots of people have never heard the label in relation to her, even people who have quite involved with her as she got older, because there has been no need to say it. Because some of her traits are an advantage in that context (e.g. being driven to achieve and happy to stick to routine so will work hard and stick to a training programme in her main sport). And she has worked hard over the years, with us and others, to learn to interact with a NT world as it expects her to.

Ask her if she had persistent medical symptoms and went to her doctor who said they weren't going to tell her what it is as they don't want her to be labelled, that might mean she can't access some help, but never mind. Would she like that?

This attitude drives me nuts . I heard it so many times when DS was being diagnosed with various LD. It is far more difficult to access help without diagnosis. Particularly ASD as some schools need that diagnosis to accept a child.

The "label" only needs sharing with those who need to know. It doesnt need to define him, but can provide insight into better ways to approach things.
For us, DS found it a relief to understand why some things are so tough for him. It's not that he is stupid, it's not that he is trying. It is something that is genuinely harder for him than the rest of the class.

He's going to get labelled anyway. My DS has so far been labelled:
The weirdo
The fucking freak who won't stop talking
The student who just won't concentrate
The person distracting the rest of the class
The child who chooses not to concentrate
The person with all that wasted potential

I could go on. The autistic and dyspraxic label is somewhat more accurate and actually useful.

If he doesn't get the diagnosis he will be labelled anyway, as naughty, disruptive, lazy or whatever when he is struggling to cope with some situation that could be a success for him with some support and adjustments.

@AfterSchoolWorry

Oh and most importantly the diagnosis helps the child understand themselves, so they don't grow up just thinking they're a failed Neurotypical.

For all the reasons that PP have said (accessing help, understanding the child better etc.) what @AfterSchoolWorry said above is so so important.

My DDs were diagnosed in their late teens and if they had been diagnosed earlier, life would have been much happier for them I believe - and perhaps they would have avoided the eating disorder, depression and self-harm.

And @BiddyPop is so right to stress the positive aspects of some traits - focus, routine, perseverance. We definitely to think of our kids and to remind them, that they have strengths and not just atypical "wrongness".

Lonny

Thanks @BagFull - he's the joy of my heart but S4 exams are proving a little tricksy. I just have no time for the 'labelling' argument, we all label everyone all the time - may as well be a useful label

I'm autistic but had no idea as a child - only found out in middle age. As a pp says I did have all sorts of very negative labels as a child (odd, weird, loner, aggressive, etc), which was quite damaging to my confidence. What I didn't have was a label that explained the way I saw the world and why I was different. I would have found an autism diagnosis such a relief, as it's been for my son.

A diagnosis helps a child (and their family, friends, teachers, etc) to understand how their own brain works, what things work for them, and also to help them be themselves rather than feeling they have to constantly try to fit in and be like 'normal' people.

I see/hear a lot, both online and IRL, about autistic children not 'needing' to be diagnosed/labelled because they are able to fit in, do fine at school, etc. This really worries me, because I have been that child and have experienced the huge stress and anxiety of making myself appear 'normal'. Often people just see the outward appearance of normality and don't understand the effort it takes a neurodiverse person to put on that appearance - they are not neurotypical and shouldn't be expected to pretend to be. For me it led to a mental breakdown and I know other autistic people who have had similar experiences. So I would strongly encourage anyone to pursue a diagnosis if autism is suspected. You/your child don't need to tell anyone they don't want to, either now or in later life, but it is hard to explain just how important it is to have that knowledge about yourself that neurotypical people take for granted.

A "label" helps a diabetic or asthmatic person to manage their life healthily. It gives them access to medication. They may have to tweak that around their behaviour such as changing doses around exercise.

Diagnosing ASD/ ADHD and other neuro-divergence helps people to understand their behaviours, improves access to management measures and can lead to medication.

The difference between DS1 being labelled with dyslexia, dyspraxia and ASD is that I know that he is not lazy when his literacy does not match his intellect, that he melts down when he is struggling to cope rather than being bad, mean or malicious and that he's working so much harder than the majority when he's fitting in and masking.
That knowledge already makes him and us happier. We can learn to manage and mitigate his world to make it a little easier to cope, but there's nothing fundamentally "wrong" with him, he's just wired a bit differently with different strengths and challenges to the normal range.

Diagnosis is positive to us as it's improved our understanding.

Similarly to PP, I always compare a diagnosis of ASD with a diagnosis of asthma. DS has both, but people have considered him ‘labelled’ as autistic but ‘diagnosed’ as asthmatic. If I’ve ever asked them to explain the difference, they can’t. ASD is a diagnosis which can lead to getting support, just as asthma is a diagnosis which leads to getting medication.

Just to reassure you though, a diagnosis isn’t needed for support to be put in place at school. Support is based on need, not diagnosis.

@SENDeducation

Similarly to PP, I always compare a diagnosis of ASD with a diagnosis of asthma. DS has both, but people have considered him ‘labelled’ as autistic but ‘diagnosed’ as asthmatic. If I’ve ever asked them to explain the difference, they can’t. ASD is a diagnosis which can lead to getting support, just as asthma is a diagnosis which leads to getting medication.

Just to reassure you though, a diagnosis isn’t needed for support to be put in place at school. Support is based on need, not diagnosis.

It's because it's so connected with personality, unlike physical conditions. Parents, grandparents, etc worry that labelling someone autistic is giving them a lot of other negative labels relating to people's perceptions of what autistic means. It's understandable to worry that in seeking help you might be putting a big sign on your child saying 'weird', but I think to an autistic person it's more like giving them a letter saying "I know you feel weird, and this is why..."

It’s just a hopelessly old-fashioned, albeit well-meaning, attitude. It comes from a time when even wearing glasses or being left-handed were stigmatised.

In reality, knowing that you’re left handed, colour-blind, dyslexic, or autistic is enormously helpful. If you are diagnosed, you can receive help and adjustments, you gain insight into why certain things are harder or easier for you. A diagnosis protects you from a generalised feeling that you are just in some way “wrong” or incapable.

It is an enormous gift to get a diagnosis early on in your schooling.

My DC range in age from primary to first jobber, and they am each have either HF autism, a spld, or both. They are all achieving very well and and are very positive about their conditions. DD, who is 20, recently expressed absolute horror at the idea of being neurotypical. She is happy just as she is. Their generation are very open and accepting of these things.

If you need to “handle” your MIL, try to get her to articulate how she thinks “labelling” would work as a process and what the negative effects would be. As you learn more, you’ll be able to reassure her that on the contrary, a diagnosis is the gateway to help and positive self-image. Maybe even show her this thread.

Thanks all - your perspective is very helpful. I really think thats such a good pint he could well end up being labelled in other ways, difficult, naughty etc etc.

I suspect with MIL it's maybe a generational thing. I could see from her face how worried she is, which made me question myself. My gut is telling me to embrace the help we're being offered, and embrace it I shall!