AIBU to wonder whether an autism diagnosis is always that helpful in milder cases?

[NCdoesexistno]

Posting in AIBU for traffic. I know there are lots of discussions about general over-diagnosis of autism on mumsnet, but I'm wondering about the actual usefulness of a diagnosis for families (we're working out some issues in our family right now).

I completely understand that for many families, getting an autism diagnosis can be a huge relief, explaining behaviours, unlocking support, and help everyone understand their child better.

But it's diagnosed through a description of behaviours that are often very disparate (i.e. two children with the same diagnosis could present with entirely different signs). In those much milder cases, where autism is more of a catch-all for a cluster of behaviours, is the label always that useful?

I know these children still face challenges they’ll need to navigate and mitigate, and of course they deserve understanding and support. I just find myself questioning whether the diagnosis itself makes a material difference, or whether it can sometimes muddy the waters. For example, if a child is not sleeping, fussy about food, hugely emotional dysregulated, or having meltdowns, then even after a diagnosis of autism, they are still going to need to employ strategies to grow up to eventually sleep, eat, and navigate society (and if they don't, they'll still have the same problems, even if they/their parents can say 'oh - it's because they're autistic'). And these strategies can surely be employed without the diagnosis.

I can see that it might help parents to feel less guilty, or more understanding of their child, but given that EHCPs aren't going to be doled out here, what benefits does it bring? And in fact, in a few cases, I wonder if it might risk 1) creating a narrative about the child that they may start to imitate or feel boxed in by, and/or 2) stop parents from reflecting more deeply on their own behaviours, boundaries and expectations.

I genuinely wonder whether the private assessment industry is just a racket now. Backed up by the fact that it's statistically overwhelmingly wealthy, white, middle-class families doing this. I'm not talking about the very clear cases of autism.

I'm aware that many people will find this rude because (if this is indeed the case - I genuinely have no idea, that's why I'm asking the question) they are part of the group who like having a reason for their kids' behaviours. So that's not really a control group.

I'm looking for non-emotive answers as we try to navigate a family situation. So the 'Don't be so dismissive - our son didn't like vegetables and was having tantrums every night and hitting his brother. Now I know he is autistic, he might still be doing those things but I know why, so it must be true' doesn't help me. For context, we are looking to make a decision in our family about this.

YABU - Even in mild cases, there are material benefits attached to getting it labelled (in which case, what are these?)
YANBU - Lots of us have random neurodivergent traits that we have to navigte, and the culture of diagnosis and needing a catch-all 'reason' for everything has gone too far and isn't always helpful.

I don't think what you're saying is as clear cut as YABU or YANBU.

For every child who will be hugely helped by understanding their autistic self, there will probably be another for whom it's less helpful. I would say I know more in the former camp.

In my experience:

A diagnosis (ours via NHS) gets you listened to and taken seriously in certain circles. School seems to want to help more.

It also means any issues your child is dealing with could be dismissed as them being autistic.

For example mental health issues with GP - "it's really common for autistic children and people to say they want to kill themselves". Er, it's also more common for them to actually do it.

To receive an autism diagnosis is not easy and even a “mild” case the traits will be having a severe impact on day to day life. Autism is a developmental disability it is not a catch all for normal childhood behaviours and preferences.

A diagnosis will give access to support and appropriate reasonable adjustments.

Personally speaking, I think it helps explain some behaviours and has changed the way I respond to them. So rather than thinking DC is being difficult (which they definitely at times have the capability of being 😆) SOME behaviours now I can see are definitely as an alternate response/interpretation of a situation. They don't have the ability to empathise OR access their own feelings in the way I do, and as a result sometimes respond in a way that is generally seen as inappropriate. Which still requires managing (by me) BUT is more logical now.

I'm sure other people still just see it as bad behaviour but I can frame it differently now. AND try to teach them coping techniques.

DEFINITELY!!!

A diagnosis offers a framework of understanding not an excuse for behaviour/s. While a person’s condition may externally appear mild, it tells you nothing of the impact on that person’s life. They don’t just hand out diagnoses; these are conditions which are negatively affecting someone’s day to day.

I mean, this is exactly the emotive response that doesn't help me in my situation (because if it were the case that an ASD diagnosis was being used as an 'excuse' or otherwise - which I'm not saying it always is! - then this would be exactly the response).

But since you asked; if anything Level 1, but I am trying to work out if even that is very helpful for us.

We wouldn't get a diagnosis via NHS, nor any huge 'reasonable adjustments' - even I as a non-professional can see that. They will still have to navigate society. I'm also not saying that getting an autism diagnosis is 'easy' (though the boundaries of ASD have been significantly widened to include more children and behaviours, aspergers no longer a thing, etc. so statistically yes, it is now a lot more common).

Once again, I have every sympathy and understanding for those with family members with higher level ASD - I can see the huge impact on family life, etc. (I mean, I have sympathy and understanding for those with all levels - I'm just trying to work out how helpful the diagnosis is in particular cases)

Truly appreciate the responses saying that it's not clear cut - that's really useful. I'm just thinking that it might cost a lot of money, and some of the coping techniques that you guys talk about might be available even without the diagnosis.

I completely get what you mean. Im currently trying to figure this out myself!

My DC is diagnosed autistic - you would probably think it was “mild”. In reality I’m not sure mild is a useful descriptor for autism - DC is articulate, has friends, has decent sleep and hygiene and manages well at mainstream school. They also self harm, struggle with self esteem, find many things overwhelming and statistically are at higher risk of things like suicide. That doesn’t feel “mild” to DC, even if it seems “mild” for other people around them.

For us the benefit of diagnosis has been:

1. DC understands why they struggle with certain things (foods, noise, personal space, “banter”) and that it’s not because they are “weird”, “naughty”, “fussy” or other labels they’d have otherwise have attracted. That’s been absolutely fundamental to improving their self esteem and mental health.
2. It’s a lot easier to get minor reasonable adjustments for a documented disability than if I just ask for adjustments because I say DC needs them. Applies to school and also things like visitor attractions and airports.
3. It means I have been able to access things like support groups and parenting advice without feeling like a fraud or trespassing into groups I shouldn’t be in. It’s made a big difference to my own mental health knowing I didn’t break my kid or cause their difficulties.
4. It means my DC has found people like them at autistic youth groups and the like - I’m not sure they could have accessed these without being recognised as autistic.

Basically for us it’s been the polar opposite to what you describe - knowing why my DC behaves and thinks like he does enabled us to parent them in such a way difficult behaviours have drastically reduced and DC is much happier. It enabled school to make minor changes that made a big difference to how they coped in school. It means their friends understood why DC got upset at innocuous banter and made allowances, meaning DC still had those good friends. I’d like to believe all that could happen without the diagnosis and just based on needs, but in reality I just don’t think it would have.

The downsides are that it’s probably made it much harder for DC if they ever wanted to join the military or move abroad to certain countries. That’s about the only downside I can find, and that’s a trade off I think is worth it. I guess we’ll see what DC thinks as an adult.

It reads a bit like like you think children just get a diagnosis and the parent thinks “Ah, that explains everything, they can’t help it” and then gives up trying to support and help their child with difficulties or behaviour. I have never seen that be the case among the many families I know. It’s actually quite offensive you think that.

Thanks! I know it provokes strong reactions from those parents who do have children on the milder end. I could choose not to post for fear of seeming 'dismissive', but this is a public forum so I'm sure they can cope. I know the word 'excuse' isn't helpful either, but I think parents all have different expectations and even abilities/capacities. I get that it might seem offensive that some people find parenting easier than others (btw I do not place myself in the camp of always finding it easy or being very capable!) but just because you feel offended doesn't mean that it's not true.

It is a question that I ask myself too.
My two children definitely are ASD but at the moment are relatively successfully living their lives.

I do worry about burnout which is associated with it.

I am also trying to figure this out. My GP and DC's school have assured me, and have apologised, that there is no support for anyone whose ASD doesn't hugely affect their lives in very obvious ways that are immediately clear; It just isn't there. And so, we'd still be navigating a world that is difficult for the ASD individual, but with no more direction than before.

I know what you mean OP. I've posted before on here about the behaviour of my son and often had posters suggest that he may have ASD. But these are small snapshots of behaviour and knowing the battle many of my friends have gone through to get a diagnosis and then get the right support in place, I doubt we'd get anywhere with my son as school aren't concerned.

I've often thought - what would a diagnosis actually change? I already understand that he doesn't like trying new foods, that he finds it really difficult to regulate his emotions, and he has very fixed ideas about how he spends his time. We've found ways to work with this and adapt to it, whilst gently encouraging a bit more flexibility. Would a diagnosis of ASD change this? I don't know.

I see how difficult things can be for parents going through diagnoses and how tough this can be so I'm not taking anything away from that - just saying my thoughts and realise everyone is in very different situations.

But what is mild? A mild presentation to you? But an absolute living nightmare for the autistic person, who internalises every trait? Autism diagnoses are generally lengthy and thorough, whether NHS or private, and usually come with pre assessment questionnaires to weed out those that would likely not meet diagnostic criteria. To meet the criteria the condition is disabling in all areas of life. Diagnosis can be life changing for the autistic person.

What about if those 'differences' start to become an issue at school though @NCdoesexistno? The vast majority of schools try to deny SEN without evidence. Parents are painted as neurotic. At least with a diagnosis they can't deny it (although my DC's headteacher tried to denigrate both an educational psychologist AND a pediatrician in order to deny them support).

Can you stop using the word “mild”… it means nothing.

Either describe specific things, or don’t bother.

My son is 18 in a few months, we didn't go for diagnosis until he was in year 9 at school. He showed signs of autism from around age 4 but he was happy, progressing as he should and excelling academically so we dodnt feel there was any need to go for diagnosis.
He preferred spending his primary breaks with the teachers in the classroom and luckily they accepted this. Secondary again was spent with teachers or in the library. He was never bullied, had friends, just preferred to be away from the crowd and felt more comfortable in adult company. Again the teachers were fine with this so we continued as we were. School also accepted he was undiagnosed autistic so they did make provisions such as allowing him time outs if needed, letting him stay in at break time, Giving him jobs to do as this is what he enjoyed. We dropped lucky with school though as I dont believe many main stream schools would make provisions for an undiagnosed child.
Year 9 became difficult. He developed anxiety, and a very very strong sense of right and wrong. This got him into fights after a friend was being relentlessly bullies. He believed it was right of him to jump in as he was the biggest and strongest and there were no adults about. This is when we went for a diagnosis. It gave him the extra time during exams which helped his anxiety, and although he was punished for the fighting the same as a NT child, the staff were more understanding and worked with me to keep explaining to him how and why its not ok. Hes takes things very literal as well so staff were able to adjust how they put things to him and if he responds to something in a literal way rather than how he actually should, its no issue and this has carried on for him at college.
A diagnosis hasn't changed anything in terms of suddenly being flooded with lots of outside support etc... weve had zero outside support, but it has helped add extras in educational settings.

I also think alot of this applies to AdHD too - and even more so to Audhd.
We are just starting the diagnostic journey with our 8 yr old. Lots of people say - oh jumping on the bandwagon. Everyone's ADHD now arnt they. ND is a spectrum. And we are also your presumed stereo type too.
But she also will need to navigate the world successfully and she is going to need massive help in the teenage years. (Already the warning flags for self harm and suicide are there - and that's not me being over sensitive!).
I find the stuff on MN sometimes isn't helpful for peoples lived experiences of neuro diversity. It's not an 'excuse' but it's an information tool that helps to plan lives in a more successful way.

2 of my boys are diagnosed with autism and once they was diagnosed we was sent away with leaflets with info on about autism but we’ve not received any extra help or classes for them on how to manage it, before diagnosis they was already prescribed melatonin to help them sleep and they already had ehcp’s in place so already getting help from the school so the actual diagnosis didn’t really do anything for us, it hasn’t helped in anyway apart from give an explanation for how they are behaving like they do.

I guess you could say I have "mild autism"

I got diagnosed as an adult. Has it helped me with support etc? No. Did I really need to? No.
Has it helped me? Yes, definitely.

My schools years were years of me being labelled. Stupid, slow, lazy, unorganised, easily distracted, a mess.

I'm not those things. I'm autistic. But my thoughts immediately turn to those labels when I struggle with everyday stuff NT people can just get up and do.

Maybe if I'd been diagnosed as a child I wouldn't have had those extra unhelpful labels and would have had more support to help me through my school years and into my adult life.

Two of my sons are autistic, one with learning disabilities that needs a high level of support, one like me. He was diagnosed at 8. Which means he's never been labelled with the things that I was called at school and on school reports. He knows why he struggles with some things, he knows ways to help himself, he's happy in himself.

BEFORE AUTISM DIAGNOSIS: You are the problem, your parenting is the problem. Your child is the problem.

AFTER AUTISM DIAGNOSIS: You have a problem, your child has a problem.

Precious little help available anyway and as to 'mild' autism - it just mean people have normal expectations of you to live a 'normal' life, work full time, manage personal admin and home life when you are actually finding doing this extremely difficult and stressful pretty much all the time, leading to stress and mental health disorders.

In my DD's case, it gave her a concrete reason as to why she was frequently losing friends, despite being very outgoing and having zero issues making friends.

She had the help of Autism Outreach in primary school which was life changing for her. They would visit school twice weekly and have 1 to 1 sessions with her where she would say what happened that week with her friends (disagreements etc) and then they would have the friend involved join them and discuss what had happened, their points of view, the language used etc to help her recognize what she had done 'wrong' socially.

She took what she learned on to secondary school, where she was able to have these 'discussions' with new friends and explain that she was autistic and struggled with social cues and recognizing when she'd upset someone, or said something 'rude' etc and asked new friends to be very 'open' and 'honest' if she upset them.

This enabled her to keep her friendships without any further help, which was life changing for her.

So without the help her diagnosis got her, she'd have had a much worse life?

For us a diagnosis wouldn't have helped or benefitted and I suspect it would have held them back. They were managing in school and a diagnosis wouldn't have helped with a difficult home life. They are now a young adult and can recognise their own triggers and remove themselves from difficult situations. We've worked on resilience, tolerance and how to adapt to the world rather than expecting adjustments. For us it was absolutely the right thing to avoid diagnosis, I'm sure many will disagree but we are very secure that it was the right path for us. Similarly others will be secure in needing a diagnosis. We're all different.

Must be hard having such original thoughts OP. Never heard any of this before.

I can’t answer for children but I can give my input as an adult recently diagnosed with Autism and ADHD that most definitely yes a diagnosis is useful. No one knows or has ever asked if I’m neurodiverse, I am very good at masking, I have a good job and passed my exams at school. I struggle with a lot of things and have done for my whole life and knowing what’s ‘wrong’ with me helps me so much now in finding ways to deal with it that doesn’t involve self destruction or complete burn out. I wish I’d been diagnosed at school.