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.

From experience - 100% this.

@ExtraOnions

I think your response is hugely unfair. To me it sounded like a caring mum trying to navigate a potential diagnosis and being concerned.

Define profound. Profound means extreme. I can assure you if you get an autism diagnosis which has to have a significant impact on life the condition comes with extreme difficulties.

The dismissal of those with autism simply because they don’t have a learning disability is frankly not just abelist but hugely offensive.

I didn’t say not helpful for an adult, I just meant it is more nuanced a decision. My sisters mental heath is absolutely improved following her diagnosis. Her ability to operate in the world, much less so since the diagnosis but her mental health is more important. I’m entirely the opposite. Hence why I said not always.

I’m “mildly” autistic to those on the outside. On the inside, I’ve spent my whole life pretending to be someone else, to fit in, to “manage” my own behaviours and traits to not appear so. Mild in this instance means it appears mild to OTHERS. The behaviours don’t impact wider society as much. The mental (and physical) toll is enormous and has led to cycles of burnout throughout my adult life.

Unless you’re in their brain, you can’t know. But just something to keep in mind.

My diagnosis was life changing. It allowed me to be myself for the very first time. Just my experience.

Both my son and I are autistic, I like many others was diagnosed after recognising my behaviour in my son. For both of us it has made a material difference. For my son in accessing support at school, for us in accessing parenting support through local services and for me in understanding what cause me to burnout and then to manage my life accordingly to avoid that. We are both high-masking, high functioning and strictly speaking I suppose a diagnosis was not necessary in that we are both capable of advocating for ourselves in some ways without it and we wouldn't die (although i was suicidal in my teens and my son was talking about suicide as young as 8 so who knows). But since diagnosis the change we've seen in our son is dramatic - much reduced self harm, fewer meltdowns and less school refusal as we all have better strategies in place to help him. And I have been able.to greatly reduce my anti anxiety medication, which I've been taking on and off since I was 16, because I know now that my anxiety is mainly caused by me masking at all times. Now I have accepted that my quirks are a function of my autism and not something to be suppressed even when I'm alone, my stress levels have plummeted and my resilience has increased. If you had to choose between funding life-saving treatment for children with cancer and funding diagnoses for people like me and my son, then of course fund the kids. But as it stands, I think the diagnosis has made a measurable impact on our lives.

I have thought about this a lot lately. I was diagnosed in adulthood. You would describe me as 'mild' - I have a job, husband and children.. However, I have never been able to maintain lasting friendships. Doing normal day to day life things is exhausting and just keeping up appearances takes up all my energy. I have suffered with OCD, depression and anxiety since being a child.

My parents raised me in a way that was well-meaning, but involved quite a lot of shaming. I always felt like I was performing and after any social interaction I'd seek feedback on whether I'd done it right or wrong. I became hyperaware of people's reactions to me and could easily tell when I'd done something wrong but I couldn't tell why. I learned to mask so well that it's hard now to know who I am underneath it. I was always very aware that I wasn't normal but I had no way of describing it. I just felt wrong and bad and like I was just worse than everyone else.

In my parents' defence, I believe their 'you have to just deal with it and pull your socks up' approach came from wanting me to be able to succeed in life and for a while after my diagnosis I would actually have said I was glad they did because learning to mask so well did open doors for me. I've been able to have a normal life on the surface. It did come at the cost of my mental health though, and by the time I was in my late 20s/early 30s I couldn't maintain the act and life fell apart a bit - which is a common story for late-diagnosed people especially.

I spend more time in spaces for autistic women now, and I do meet some who don't mask like I do and even now I find it uncomfortable to be around them because they're not following the social rules I learned so painstakingly. I cringe them they talk too much about their interests without noticing other people aren't responding enthusiastically and I find some of the bluntness quite jarring. There's one woman in particular who is a lot more stereotypically autistic and her parents were very supportive, got her support and diagnosis from a young age, and now she is living independently albeit working in quite a niche role which allows her the flexibility she needs.

If I compare myself to her, I think - would I rather that? I don't know. On one hand, she's a lot 'weirder' and isn't able to pretend to be normal in the way I can. But I think she's undeniably happier. She has friends, hobbies and knows who she is. She's not travelled the world like me or risen as high in her career but she also isn't constantly struggling all the time just to survive the daily grind.

And so I really do get why some people would rather not get their kid diagnosed and why they'd be worried that it might hold them back. But I think diagnosis is the best way forward.

At the very least, both parents need to learn about autism and be ready to support their child. There are so many things that I struggled with as a child that would have been solved in the simplest of ways if my parents weren't so desperate that I must be 'normal' even in the ways that didn't actually matter.

Eg 1 - I was constantly taken on holidays to the beach and told I was ungrateful when I was being a nightmare on the way back. Actually, it was because of a sensory issue with having sand on my feet and putting my shoes on. Had I been allowed to bring stuff to properly clean and dry my feet near the car before putting my socks back on, I'd have been fine but instead I was told I was being ridiculous. They'd wipe my sock quickly against my foot and force me to have it on and the drive home was unbearable.

Eg 2 - I had severe anxiety about the phone which I think partly because I needed to see the other person's facial expressions to be hypervigilant of how I was coming across so I'd perform worse on the phone which would make me panic. Every time I had a birthday or Christmas, I had to call all of my relatives on the phone to thank them and it caused me such anxiety that I genuinely would rather have not had any presents. I remember expressing this one year and being shouted at for being so horrible and ungrateful.

I'd lie awake panicking for weeks before my birthday. I'd have happily written a thank you card. I'd have written a 10-page thank you letter. Even if they felt that phones were a skill I absolutely needed, so it was non-negotiable, things like practising with me, helping me with a script etc would have helped. In a world where I could have been a child in 2025 with an autism diagnosis, even just simply being able to explain it to the family members that I was going to call, so they'd be a bit more understanding would have made a massive difference.

Eg 3 - I was a fussy eater at a level that they'd have showed on a bad 00s TV show. It was a sensory thing and it came from a fear of trying something I didn't like and then having to swallow it. I still feel sick at the memory of mashed potato in my mouth because it always reminded me of the way vomit rises in your throat, all thick and claggy.

Luckily my parents were very supportive about specifically this one issue but a lot of other family members were not which caused issues because I was often looked after by extended family members. Rules like not being allowed water with dinner or having to finish your plate made me terrified of having anything unfamiliar on my plate.

As soon as I became an adult, I was able to expand my diet enormously because I could allow myself to sit there with something new, try a tiny bit and spit it out if I had to (which, to be clear, is almost never, but it's about the safety of knowing I can). Growing up, I can't imagine an offense much greater than spitting food out of your mouth but by being able to do that by myself I've been able to reach a point that I have a mostly normal diet. I obviously would never spit something out in public.

I could literally come up with 50 things like this. Tiny things that labelled me as difficult or lazy or spoiled that actually were extremely distressing and had a really really simple solution.

Now obviously, a lot of people would say that they'd parent in a way that would allow adjustments to their child without needing the diagnosis but I've found that people really don't find it easy to listen to children and take them seriously when they're being 'silly' about something.

My 2 year old is in the process of being diagnosed now already and even at his age I am astounded at how many people seem to assume the worst intentions from him.

For example, he recently started asking for water right after eating, but when you hand it to him, he won't take it - he just drinks from it while leaving you holding it. Every single person who has seen him doing that has immediately jumped to the assumption that he's spoiled, is a prince, can't be bothered lifting his hands up etc.

Which may be an understandable assumption but actually it's a sensory thing. He hates having sticky hands and won't touch anything until they've been cleaned. He just needs his hands wiping or washing and then he'll hold his drink himself as normal. There are so many small things like this that I only understand because I often feel exactly the same as he does.

Now bear in mind here, I am NOT expecting our child to have his drinks held for him. I am not excusing bad behaviour or expecting people to cater to him. But it's a tiny thing. He just needs his hands washed. As he gets a bit older, he can just do this himself, but he's at an age where he doesn't always express himself that well. He can tell you he wants to wash his hands, but if he wants to have a drink first, he doesn't see anything wrong with assuming you'll hold it. He doesn't understand any implications that he's spoiled or lazy or anything like that because why would he?

He's already misunderstood so often and he's only a toddler. He says things like "what are you doing here?" and people immediately assume he's being cheeky but he's literally asking what you're doing here as in "have you come to play?".

Yes he will need to learn all this stuff in order to get by in life, but social rules really don't come as naturally to autistic people and from the earliest of ages we're chastised constantly for things we do not understand. It's really not good for the self-esteem and so I do think diagnosis helps in that way.

This is my experience too. My parents didn’t believe in neurodivergence and still don’t and my symptoms are not obvious to others as I have spent my life masking so no chance it was ever going to be picked up while I was in school. I didn’t know it myself, I just knew there was something wrong with me. Even now people are really sceptical and dismissive if I tell them, and try to convince me that it’s something else. But it’s helped me to understand and forgive myself and to stop striving for certain things that just aren’t achievable for me. I wish I could have known this about myself a long time ago rather than spending my life trying to be someone I’m not, feeling crushing anxiety every day before work and before every social occasion, dealing with depression, burnout, shame and self-loathing.

I can only tell you my experience. I was discussing my middle child with his year 2 teacher. (Oldest already had a diagnosis of asd at this point). I outlined that he was definitely a quirky child but that he’d never get a diagnosis. Fast forward to him moving to year 3 and even before half term I was at the paediatricians office begging for a referral for assessment.

I think a diagnosis is useful and important. It leads to an understanding of the roots of their behaviour. If a neurotypical child is a fussy eater you’d probably regularly encourage them to try new things, with an autistic child I would understand that they’re not fussy and that constant encouraging only adds to their stress. I’d understand that they absolutely will starve themselves. It’s a lot more nuanced but I hope you get the picture.

fwiw, there’s no such thing as “mild autism” and we’re not all a little bit autistic. The difference between a bit quirky and diagnosed autistic is impairment. It’s a spectrum to illustrate that everyone is affected differently, you’re not at one end (mild) or the other end (severe)

lastly my oldest was told at 7 or 8 (by a consultant psychiatrist) that there wasn’t a trace of autism there. A year later he was reassessed and the clinical team couldn’t u see stand how it was missed.

very definitely lastly there isn’t a general over diagnosis of autism right now but there is a fuckton of us that were never diagnosed and just had to get on with it and pay the price. Please don’t, for a minute, think that we are coping, we are not.

For most of my adult life, I explained away 99% of my difficulties as “just anxiety” and kept telling myself they’d eventually get better. I was 34 when I finally got diagnosed, and that allowed me to stop minimising everything as temporary or something I should just push through. I realised that the things that overwhelm me aren’t going to suddenly disappear one day, so instead of constantly white-knuckling my way through life, I began to look closely at my triggers and put strategies in place to make things easier.

For example, food shopping was always exhausting because of the noise, lights, and crowds. Even though using click and collect helped, I would feel guilty and tell myself I was just being lazy. So I’d force myself to go in person, only to end up completely drained every single time. I kept thinking it would get easier with practice, but it never did. Now I understand why — it wasn’t laziness, it was my disability. Accepting that has allowed me to put the right supports in place without guilt

This comment doesn’t even make sense

I was really moved by this - thank you for explaining these aspects of your world so clearly

But don’t you think this is really offensive to those people who (in your words) have “just anxiety”? And I think you would be entirely within your rights to do a click and collect and not feel guilty “just” because going round the supermarket is an overwhelming experience for you. There are people without ASD who feel exhausted by that too, and they aren’t lazy - people just have different capacities for different things. It feels like disability too trumps - it’s not enough to just find something hard (really hard!), we have to beat ourselves up about it unless it’s diagnosed (whether ASD, or anxiety, or whatever).

Im an autism assessor. I think your question is really interesting. As a late diagnosed woman myself (47) I can tell you what a relief it was, and how much it helped me to understand myself, to help loved ones understand me, and this great feeling that I had a reason for some of the struggles I had. I wasn't just 'weird' or 'difficult'. I certainly grew up feeling that way, by all the adults around me.

Im female and of course the female presentation is still very much misunderstood and neglected. I would be considered 'mild' in fact - as many women and girls would - because of masking and my special interests being more 'acceptable'. But what we now know is the huge impact masking has on mental health and functioning later on down the line. So in fact I am often more concerned about the children and adults who mask hugely and others report as 'mild' than those where it is more blatant.

In summary, assessments aren't perfect, but if you go with a decent provider I do think they are always of benefit no matter how 'mild' the neurodiversity may appear.

No, it’s not offensive to people with anxiety. Anxiety can improve, with treatment, and facing your fears often helps but the sensory overwhelm from supermarket lights, noises, choices etc, that won’t get better. We won’t acclimatise to it. I’ve never met an autistic person that didn’t also suffer from anxiety. But even without anxiety I will always be exhausted by a “trip out”. Most of us have an element of sensory processing disorder and even understanding speech is tiring for me

I think your original question comes from a lack of understanding of autism “they’ll have to navigate the world anyway”. I’ve had to navigate the world anyway at catastrophic cost to my mental health. Other people forced to navigate their life undiagnosed and unsupported develop addiction issues or have toxic, abusive relationships. I wouldn’t put my kids through it.

If neither you nor school think an autism assessment is needed, but one might be happening anyway, I assume you aren't a parent. Perhaps a step parent?

Bear in mind that children act differently in different circumstances. This is particularly common for autistic children (masking). My kids mask significantly at school, but also with the family members they arent as close to. The safer they feel the more the mask drops. So if you arent seeing the same things that other family members are they might not feel able to show that side around you.

I mean “just” as in the only thing, not as to quantify it, as in I still have anxiety and also autism.

Absolutely. To get a diagnosis you need significant deficits in social/ communication , sensory and routine areas.

Significant deficits.

Diagnosis offers legal protection, understanding, easier (but not easy) access to reasonable adjustments.

What are you talking about? Can't you understand the decision between neurotypical anxiety about being in a crowded place, which is a learned response to previous stress or trauma that can be mitigated or unlearned with time and intervention, and ASD sensory regulation issues, which result from innate developmental differences and cannot (at least at the moment) be unlearned? If you think you have the former, you might keep exposing yourself to the trigger to see if you learn to manage it, because not being able to manage crowded places is a barrier to social life as it has developed and should be treated if it can be. If you have the latter, that's a very different kettle of fish and a different workaround is needed.

This is actually a very neat example of why people with autism and their families really need to know that they have it, so that well-meaning people don't encourage people or children with autism to repeatedly expose themselves to harm on the mistaken assumption that it's some other treatable issue, when doing so will achieve nothing.

So so useful, moving and elucidating. Gives me much to think about. Thank you

Perzival is well known to hold these strong views around, as she's entitled to, because of her child and that is her experience.

However if you are genuinely asking in good faith then I would urge you to genuinely consider the views of everybody and expand your thought process so that you don't appear to have a bias.

Many of us have explained our legitimate struggles and the benefit of having a diagnosis.

It is a biased opinion to feel that only those most profoundly affected deserve support.

Anxiety disorders are mental illnesses that are treatable. There are different therapies available but essentially it comes down to 'keep exposing yourself to the anxiety-inducing things and it'll get easier'. A lot of us were misdiagnosed as solely having anxiety disorders and then felt like failures when it didn't get any better. It is very freeing to find that it's not because you haven't tried hard enough but that you will never ever be 'normal'.

It's like, you've spent your life forcing yourself up a mountain and you're exhausted. Your body is ready to give in. Everyone else is tired too but what none of you realise is that this whole time you've doing it with Permanent Broken Leg Syndrome. Everyone else is enjoying the walk and doesn't understand why you aren't enjoying it. You can't enjoy the view because you're having to put all of your focus on putting one foot in front of the other. It's so hard. Why isn't it so hard for them?

Nobody else is acknowledging that your leg just doesn't do what theirs does. Or when they do they say 'why have you got such a weird leg? Have you tried moving your legs normally like this?'

Then you find out it's not your fault - you have Permanent Broken Leg Syndrome. It won't ever get better. So instead of carrying on up the mountain, you make camp and let yourself enjoy the view. And it turns out, you can still manage some trails, on your own terms. You can still see new things and have adventures. You might need a walking aid or you might need to stick to different routes, but that's okay. It also turns out you're pretty good at fishing and you don't need your legs at all for that.

It doesn't mean nobody else is allowed to use walking aids or slow down or take a different route. Some people might need to to so temporarily and some permanently like you. Some people just want to take a different route because they just want to. That's fine.

Everyone's on their own journey and going at their own pace but importantly, you're not still trying to force yourself to keep up with everyone else. Realising you will NEVER walk to the top is extremely liberating.

Some people say that ideally, a chair lift would be installed so that absolutely everyone can get to the top of the mountain if they wish, but that's a bit more controversial in this mountain-walking society.

As this Permanent Broken Leg Syndrome becomes more well-known, some people do not want their children to get checked by the doctor because so many people are finding out they have that and then they stop walking up the mountain. They don't want that for their child. They want their child to reach the top and achieve happiness.

I'd question whether there's such a thing as mild autism. People might have said it applied to me (I'm married, holding down a full time job and am in MENSA). The inner turmoil and long term damage caused by growing up with undiagnosed autism are far from mild though.

A million times this.

It's not possible to quantify Autism. It's not an illness, it's not like where you might be "mildly" congested as opposed to incapable of breathing independently due to pneumonia symptoms.

Just because someone is verbal, erudite, capable of independent living, and also has an Autism diagnosis, it does not mean their Autism is "mild".

I didn’t get an autism (and ADHD) diagnosis until adulthood but I feel having the diagnosis in childhood would have helped me. I was labelled as naughty, weird, manipulative, rude, bad tempered, grumpy etc. I was told off for stims and tics. I was diagnosed with a myriad of mental health issues in my teens and twenties - GAD, depression, BPD/EUPD, bulimia, OCD. Knowing I am neurodivergent has explained so many of my behaviours but more so it has enabled to develop strategies to cope with things where I couldn’t before because I have a better understanding of the kinds of strategies that work for ND brains. Having a diagnosis doesn’t remove the need to try and find strategies where possible for issues, but it does remove some of the stigma around the issues and also makes it easier to know what kind of strategies are worth trying.