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.

Yawn.

There's no such thing as "mild autism".

HTH.

Yeah, that makes a bit more sense. Thank you for rephrasing it.

@NCdoesexistno I'm 100% with you. Speaking from decades of experience of both ends of the spectrum.

From what I’ve read and heard, it seems to be more thorough when they’re younger. Mine’s a teen. This was an NHS diagnosis. We went for a private assessment for the issue that caused her the problem at school - and by crikey that was thorough! It really goes in depth with how the issue affects her and how to help in the school environment. Gave that to the SENCO and it was ignored. Only reason we agreed to the ASD assessment was because we thought we would be able to access the required therapy rather than going private. But basically it was ‘here’s the report, off you go’. The ASD report is a waste of space! They got loads incorrect from the discussion with me, and totally made up a special interest!! Honestly a complete joke!

I came to basically say pretty much all of this.

Sorry you are also going through this as a family.

I actually think an autism diagnosis is an important part of looking after your overall health. The same is even more true for ADHD because there is medication for that.

My very experienced ADHD psychiatrist said that my undiagnosed autism and ADHD would likely have been a contributory factor to me developing ME (aka Chronic Fatigue Syndrome). She also thinks this could also be why my ME has got a lot worse. I am now too unwell to work.

The same doctor also told me that she wasn't surprised to hear that I had experienced domestic abuse for many years without realising it. As an autistic person my ability to make inferences, understand body language etc are practically non existent even though I am extremely bright. I have had a lot of bullying, but now after the being given the full understanding of my difficulties, it is easier for me to identify and avoid bullying.

Life is inherently more stressful and tiring witb any form of neurodivergence and if it undiagnosed, therefore nobody is taking into account, it is more stressful still,

As far as children are concerned, my young adult DC2 got an ADHD diagnosis a few months ago. I can now understand them and support them a lot better.

I see so frequently on here that people are worried about getting a label. It is not a label - it is a very significant medical diagnosis which if ignored can have a very deleterious impact on your health, self esteem, career and finances.

I wouldn't have paid thousands for it and it hasn't materially impacted DC life having a diagnosis. No particular additional support or help offered ongoing though we did see psychologist and occupational therapist during the process and got help and advice from them. We got diagnosis through NHS and weren't particularly looking for it at the start of the process and even during the process (very thorough and lengthy) I did wonder what the point was for us and if we were just labelling DC for no particular benefit. Overall though it was positive experience and I am glad we have done it - nice to know and also I think when we might have difficulties is with secondary school and at least we will have the diagnosis for any future issues and be able to get support and adjustments quicker and easier (hopefully). It also makes me as a parent feel better - I spent ages reflecting on our parenting, boundaries etc and now I can have more confidence to implement different strategies and to ignore people who have certain opinions on what we should do better. I think it also helps us be more understanding of certain behaviours and to ask for help/support during extra curriculars (sometimes we don't it but sometimes it gives me a way to say can you approach something new with DC in this way)

Remember, you experiencing their autism mildly doesn’t mean they experience their autism mildly.
m.youtube.com/watch?v=D8j1fcQiyBU

My view on this would be that 2yrs is a long time. If your child is fine by then you could always withdraw. But if you don't go ahead now you'd have to start the 2yr wait from scratch if things got worse in future.

Both my kids did ok until age 7/8 when social structures and workloads changed hugely and they couldn't cope in the same way. My older child was assessed at age 7 after a 2yr wait. I decided to wait a bit longer for my younger child and it's now a 4 year wait which is awful.

You're taking a bit of a bashing OP, particularly around the use of language, and while I understand why others have reacted emotively I would like to highlight that "clunky" language is not equivocal to being rude. We don't grade autism in levels in the UK, and we no longer use high/low functioning, and in the absence of these it is difficult to articulate the range for want of a better word of the impact/level of impairment being caused. Having worked in specialist residential schools for children with ASD who need phenomenal amounts of support and will do indefinitely, and simultaneously having my own child with ASD whom we hope will grow up and live independently, clearly the impact on their lives is different and it's disingenuous to pretend otherwise, but there is no agreed way of articulating that.

Gently, OP, it's important to understand that those whom you/society consider as having "mild" autism (previously likely called high functioning) are actually better thought of as "high masking", in that the experience for them is no less debilitating, they just don't express it in ways which are inconvenient/disruptive to society, and so therefore are considered as "less autistic", not because their experience is any less, they are just having less impact on others so it's easier to ignore them, to put it bluntly. It's why "mild" feels dismissive and emotive to a lot of people who would fall into that category because it can undermine what they are experiencing.

To answer your initial question. We closed to get DS diagnosed, with support from his nursery. He got his diagnosis at 3, which is pretty young by NHS standards, and was largely fueled by a speech delay - the delay had actually improved significantly by the time of his assessment, but it meant we had the appointment and actually there were enough other behaviours to warrant the diagnosis once we were there, but to most people from a distance, there's not much to see unless you actually stop and observe him. It's become more obvious as he gets older as it gets harder for people to say "everyone his age does that" but many would consider him to be "mild" as we know his triggers and can parent and manage him accordingly and avoid situations we know may be too much for him, so he's not melting down regularly in public places. He also can mask quite well so won't necessarily lose it there and then but it will be the start of a cascade until the bomb goes off later in the day, because it's still having a huge impact, he just doesn't necessarily display it immediately.

I have found his diagnosis useful. Like you say, he needs to function in the world diagnosis or not so he needs to learn coping strategies etc and I agree 100%. Except you don't teach a child to swim by throwing them in the deep end and letting them fight it out, you teach them the skills they need to stay afloat, and this is exactly the same. There are loads of areas that other, NT children may already be able to demonstrate, but we need some more practice. But the only way to get access to the baby pool to do the practice before we throw him in the deep end is if the lifeguards agree. And as much as we would all love the lifeguards to say "of course, it doesn't matter why he's not ready for the big pool yet, stay here as long as you need" what you usually get is "well everyone else can do it, why didn't you visit the baby pool when everyone else did?" Except we did visit the baby pool and we're there, but when they were splashing about we were working on just getting in to begin with, and so now we're only just where the others were a year ago. And having that diagnosis helps explain to the lifeguard that he's not just being lazy or naughty, and it's not that we haven't tried, but we just need some extra time to practice before we move on to the next stage. DS struggles immensely with crowded places and queues, and his diagnosis allows us to get passes that means we can queue elsewhere/skip queues or visit places when they are quieter. We hope we won't have to necessarily do that forever, but what it does do is allow us to meet him where he's at. He'll never get more comfortable with crowds if he doesn't get exposed to them, but if he's already had to queue for an hour to get into the crowd then he's not going to be able to tolerate it, and frankly, he's just as much entitled to be in public spaces as anyone else and this is what we need, for now, to get there, even if we never reach a point where he can tolerate queuing.

It's the same with nursery/school, there are loads of really small adjustments that make his life easier, and allow him to engage in his learning, but the reality is without a "reason" the education system is likely to label you as "that parent" and your child as "naughty". Not least his own understanding that he's not thick or weird or anything else that a lack of understanding of his own brain may have caused

I do think there's a lot more nuance in older children though, and diagnosis doesn't help everyone, although in my experience I think more feel it helps them than hinders

If you have money, just support privately. Noone needs to know your labels

Some reflections:

• I've heard from multiple parents privately to say that they have had ASD diagnoses for their children and either it made no difference or they actually regretted it, but they don't want to say so openly. It seems there is a complete omerta around the topic - I'm not surprised, given the response that 'there is only one way to think about ASD children and it's one that 100% accepts the narrative that everyone who is diagnosed must actually have something that should be diagnosed'. That's particularly interesting as it's an outlier for symptom-descriptor diagnoses (there's no 100% acceptance of fibromyalgia diagnoses, for example).
• Is there not a circular logic in the argument that 'A diagnosis has helped me and my child feel better about themselves/gave them access to support/a different job/no fines for non-school-attendance/a framework to understand them; therefore it must be true"? I have heard the same thing said of trans teenagers who are 'Only happy when they've accepted themselves' as a member of the opposite sex. I don't accept that. It's difficult to make this point without people intimating that I'm saying it about all kids with ASD - I'm not. I'm simply saying that the argument 'I like it, therefore it must be true' doesn't stand in any other context.
• People have jumped on 'mild' - that has given me lots to think about. I still maintain that some tantrums in the family and masking at school is 'milder'/less dramatic than an individual whose ASD means they don't have the same cognitive or communicative ability as someone entirely neurotypical. And that that 'mildness' requires a little more consideration than 'get a diagnosis'.
• Lots of things make people 'stressed' - masking ASD might be one, but there are obviously other non-ASD related factors too. My point still remains that if there is something that is triggering someone, why would it make that much difference if it happens to be under a cluster descriptor of 'ASD'? Nobody has really answered that for me.
• ASD is very often highly genetic and I wonder whether the vociferous rebuttals also speak to the ASD of parents and not just children
• Whether or not something is 'true' is important for me. But I can also see the personal 'value' in a label. I'm weighing the two up. Probably at the end of the day, I too would go for the personal value even if I'm still a little skeptical about the actual reality. The question though, is whether for some of the level/behaviours I'm talking about, a diagnosis actually does more harm than good.

You've all given me lots to think about - even the angry defensive ones. We are all working for the good of our children aren't we - that's all we want at the end of the day.

Coming back to this thread, to add another point. I found that after ds was diagnosed, it was much harder to enjoy him, the way I had before when he did something cute, adorable or quirky. I found myself looking at everything as evidence of a disorder. And initially I was focused so much on helping him that I was looking at after school activities to address deficits rather than things he might enjoy or was already good at.

I think I was a better parent to him when I was intuitively responding to who he was. It took quite a while to get out from under the barrage of other voices and reconnect with him and with myself.

But then I have to balance that against what happened later, when he started to really struggle. Having a diagnosis in place, meant we were hitting the ground running. (I’ve just seen your update op as I’m writing this, and I’m struck by how powerful the word “autism” has been in cutting through the problem of masking. School don’t see what’s going on but because of the diagnosis they believe me when I describe the restraint collapse, and they don’t reflexively blame me for it. Yes it is circular reasoning, but it helps mitigate the enormous harm that school can cause)

Is this for your child or a niece or nephew or stepchild?

I have to say you strike me as being autistic by the way. Maybe the "mild/high functioning/level 1" version, if you will. Just something in the way you present your posts or perhaps it's in the way I read/perceive them being autistic myself.

It won't be too far fetched if you have a dc who also is.

A lot of people with "mild autism" are just masking and the stress of it will come out in the end.

'Labelled' 😒

Yabvu

And I present very well initially and its not immediately clear that I am autistic. I still couldn't cope in society the way others could and had several breakdowns, thinking that I was stupid and a loser

What was really happening was I couldn't understand social cues, struggled with exhaustion from trying so hard to socialise with my peers. Among other dangerous things.

A diagnosis, even though in my 30s changes nothing, means that I understand how vulnerable I am to abuse, bullying and generally being 'messed with'.

Someone who seems to cope well with societal pressures, can benefit from understanding that they are going to find it harder to understand how the world works.

What are you talking about? There is no mild autism. In order to get a diagnosis it needs to have significant impact on life.

Nobody by is going to get a diagnosis with “some tantrums in the family and masking at school” there is a lot more to it than that.

But you know that don’t you.

Same old anti autism goady thread.

I'm 50/50 on it. Our son is 3 and was diagnosed at 2.5, which where we live entitled us to free services, and I'm kind of convinced the psychologist did this to get us the services. Our son has changed substantially since the diagnosis was given, to that end we want to get him re-evaluated by another professional. He is definitely high functioning and gifted, we don't debate that. The pros of the diagnosis are that we get free speech and OT which have been hugely helpful in helping his delays.The negatives are that we are now stressed out of our minds wondering if he can go to mainstream school in a year or two, we see behavioural things that we otherwise would not have noticed, then have to remind ourselves that our neurotypical DD did similar or the same things, and it is easy to attribute toddler behaviours to ASD just because the diagnosis is there. My DH is undoubtably on the spectrum, very high functioning, and really had to push himself in life to get to the social piece in place to allow him to function as a "normal person", but he got there, and is very successful in his field, and is a great dad and husband. There are a lot of people now with ASD diagnosis who aren't working, who aren't able to, and he is convinced that if we give/tell our DS that he has a diagnosis and let him lean into it as a crutch that he will do worse in life than if we don't, or wait until later. We don't really know how things will play out, but we are fully on board with early intervention to help with his socialisation, speech and rigidity on certain items. We would done the early intervention regardless of his diagnosis, but likely would have paid privately. I see a lot of parents on high functioning ASD groups, whose high functioning children are being put in ASD specific schools and wonder if it does more harm than good, but some go to mainstream school and can't cope. I wish there was an easy answer. I do think that people regardless of diagnosis should be pushed somewhat. No one gets anywhere in life or grows by being entirely comfortable. Urgh so many feelings on this one.

Diagnosis does make a difference to what is triggering. Noise triggers my Mum but she isn't autisitc. It's because she has mild hearing loss and certain types of sound are problematic brcause they are out of balance (she only found out she had hearing loss because of this and hearing aids have helped). Similarly you could have sound sensitivity due to migraines or I'm sure all manner of other things I don't know about. How you treat those things are very different.

Similarly eating issues. Food could be a trigger for a child due to sensory issues or interoception issues due to autism. Or there could be physical health issues or allergies or anorexia or ocd etc.

How you would treat a shy child who didn't talk much is very different from how you'd treat a child with selective mutism or one who struggled to talk due to physical issues like tongue tie.

The danger with no diagnosis is that other issues can be assumed to be autism when they aren't.

My point still remains that if there is something that is triggering someone, why would it make that much difference if it happens to be under a cluster descriptor of 'ASD'? Nobody has really answered that for me.

There are many reasons why it’s helpful to look at the why, rather than only focusing on the what.

I have two dc, one autistic, one neurotypical. As dc they often were triggered by similar stimuli - the autistic dc for reasons related to sensory processing, and the nt dc because they had learned this trigger was a predictable antecedent to a meltdown.

In both cases, a response that was helpful and appropriate to one would not help the other. If I remove the distressing stimulus from the autistic child that will help, because it reduces sensory suffering. But for the nt dc, that could potentially reinforce an anxiety pattern or a phobia.

Another example might be where a difficulty arises in communication- My autistic child sometimes assumes that I know something because he knows something. Or that I can feel the emotion he’s feeling, even though his tone of voice is deadpan. My nt child can very quickly deduce that we’re not on the same page and provide the relevant information succinctly. And I can do the same for her, but my ds lacks that instinctive insight, and it’s a bit of a dance through a minefield to find the missing info and avoid him making wrong inferences about my motives for asking. Without an uunderstanding of autism, I’d be applying assumptions about his thought process and jumping to conclusions.

The easy answer to that is to have lots of postive role models to share. My children know the huge benefits of ND brains and all about the scientists, engineers, inventors, musicians, writers... etc etc that have shaped our world. Not at all downplaying the difficulties too, but children absolutely should be brought up to know that people are people and a diagnosis (or not) doesn't dictate outcomes.

Yes it helped me understand her. School also referred us to an excellent parents course run by specialists.

Is there not a circular logic in the argument that 'A diagnosis has helped me and my child feel better about themselves/gave them access to support/a different job/no fines for non-school-attendance/a framework to understand them; therefore it must be true"? I have heard the same thing said of trans teenagers who are 'Only happy when they've accepted themselves' as a member of the opposite sex. I don't accept that. It's difficult to make this point without people intimating that I'm saying it about all kids with ASD - I'm not. I'm simply saying that the argument 'I like it, therefore it must be true' doesn't stand in any other context.

I found this paragraph really hard to understand where you're coming from.

Autism diagnoses aren't given out because they feel nice, they're given out because the person in question meets the diagnostic criteria.

If someone meets the diagnostic criteria, then a diagnosis can be made, however with autism they also (should) rule out other possible causes such as trauma and early infantile illnesses that can affect development, other conditions such as FAS etc.

Being diagnosed doesn't fill you with euphoria, or alleviate dysphoria. I am happy now I understand myself better, and feel better able to advocate for my needs, but I don't feel elated to call myself autistic, nor am I actually neurotypical and identifying as something else.

Lots of things make people 'stressed' - masking ASD might be one, but there are obviously other non-ASD related factors too. My point still remains that if there is something that is triggering someone, why would it make that much difference if it happens to be under a cluster descriptor of 'ASD'? Nobody has really answered that for me.

Masking is a survival mechanism. It's routed in trauma. For me, it's supressing the fight/flight reflex when I am overstimulated, in situations where I have a clear social disadvantage due to the way my brain works, and pretending everything is OK. Like the Monty Python 'tis but a scratch when it feels like my arms have been ripped off, or there's a noise I can't escape from that makes me want to put kebab skewers in my ears so I never have to hear anything ever again, or ultimately end my life because every single day there is something out there beyond my control that makes me feel so uncomfortable, in pain, and overstimulated. It's like having the worst plantar fasciitis of your life, hobbling along, and people telling you it's not that bad, everybodys feet hurt when they've been walking, you've only another 50 miles to walk before you can sit down and you're not allowed to make a wimper because you'll get piled on, bullied and called names, you'll lose your status at work, people will think you're incapable. It's scripting your phonecalls ahead of time because your brain can't process language in the same way as a neurotypical person. It's feeling every seam in your clothes, like you've got fiberglass lodged in your skin, but you're in a business meeting and have another 8 hours before your shift is done so you have to act like it isn't there. Sure, everybody gets stressed. You and I might get stressed that our unreasonable micromanaging boss has given us another project with a deadline of 2 days while we're managing the workload of a coworker who's on annual leave at a critical time at the company, but the difference is, the lights are piercing my eyes, I want to tear my clothes off, I am processing everything, everywhere, all at once, I can smell John 4 desks away and it feels like my stomach is going to either burst out of my mouth or my bum and holding it in is making me dizzy, it's 23 degrees which is 1 degree higher than I can cope with and I feel like my body is cooking me from the inside out, I have poor interoception so I haven't noticed that I haven't actually had a drink of water since 9pm last night, people keep talking over each other and it's the equivalent of "my lovers got no money he's got his trombolese", and everytime I say what they just keep saying "trombolese!" at me like I'm just not listening well enough.

If I know I'm autistic though, I can say, hey boss, I'm autistic, I need to set reminders on my phone to remind me I haven't had a drink, sometimes I need things in writing if it's important, and I will be wearing linen trousers from now on because I can't cope in polyester in summer.

It stops people placing the blame on individuals for things outside of their control, and means we don't have to suffer or struggle because we can not do things the same way other people can do them, ultimately stopping people like me feeling like they're simply complete failures who can't try hard enough, and stopping it from feeling like there's just no purpose to life at all.

There's stress and then there's the cumulative effects of overstimulation and being chronically misunderstood and misrepresented by your peers and both of those things are different to everyday stressors of life that everybody has to face.

So I was diagnosed in my 30s, and DD as a teen. I think a lot probably depends on the individual, whether the autism is combined with intellectual disability, and also the person themselves.

Everyone I know who went through the diagnostic process and was diagnosed had a period of time where they struggled to adjust to the 'label'. For different reasons of course, because we're all different.

For example, whilst I had known I was autistic, I found it very hard to actually see in black and white that I was as socially awkward as I had worries, amd I felt like there was a stigma around it - it took a while for me to be comfortable mentioning it, even when completely relevant to the topic of conversation.

For DD, whilst she had no issue with the concept of being autistic, for a period of time it became a big part of her identity and she used it as an excuse to retreat into herself (or in her words she spent a couple of terms 'tweaking out'). That impacted her both academically and socially last year, and it was internal not external - she had nothing but support from her friends. She also feels no social pressure to conform!

I don't regret either diagnosis - I just wish I'd done DD's about two years earlier (it's closer to GCSEs than I would want in hindsight) and that I had also been diagnosed whilst I was young (destructive coping mechanisms are very hard to unlearn). We didn't get anything special, or any special support with either diagnosis, but we do know ourselves better.

I'm sure there are people who regret the diagnosis long term, but I associate with a lot of adults with 'mild' autism and I've yet to meet one. I know plenty that have chosen not to pursue a diagnosis because they don't think it will help, but obviously that is self selecting - they will never know if it would have done. Of course my sample group is self selecting - I suspect if you regretted your diagnosis you'd probably not admit to being autistic to others!