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.

You are talking about "working diagnosis". Very common for autism as adaptations can help even if the person is eventually deemed to not be autistic.

I know you’re trying to ‘fit’ ASD into a pigeon hole(s) but it’s not like that. My DD16 was diagnosed with ASD a few years ago, what would have been called ‘mild’ or worse still Asperger’s, however, she can’t go to school,
can’t leave the house without noise cancelling headphones, ear buds, gets overwhelmed REALLY quickly and becomes transiently mute when really overwhelmed. So even saying ‘mild’ means an irrelevant as she’s unable to cope with a lot of her surroundings. DS 13 has ADHD and ASD and presents very differently to DD, however the hearing issues, sensory overload are poweerdul for him too, and it’s something that’s been developing over puberty too so it’s ’getting Worse’ and will develop in its own way. DD has an EHCP for college which starts next week, and DS gets support needed at school too (DD was given tutors at home from her school, and online so she could get some GCSEs and she did well, had she stayed at school she would literally have for nothing as she’d never go, or couldn’t cope with the classes and have panic attacks (what happened when her mask slipped when she was 13 … girls mask well until it all gets too much for them) … so it’s extremely complex, hence only a few people allowed to diagnose, thankfully.

“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.”

So with a diagnosis that details the significant impact his social/ communication, repetitive behaviours/ restricted interests and sensory difficulties alongside anxiety, masking and literal thinking he may have that he can’t help you step back and look at cause and how better you can handle your son. You may have to let vegetables go, what is causing the tantrums and hitting? Is it a struggle to communicate, are his sensory needs being met etc

And just to be clear - no one gets an autism diagnosis just based on a parent's assessment of whether their child's behaviour h
Is 'normal' or not.

That book has been hugely criticised as she pontificates about serious conditions such as cancer and autism whilst having zero expertise or qualifications in either .

DS has Aspergers syndrome, he was able to take his exams in a small room and was able to get interview questions in advance for his apprenticeship. It has been absolutely life changing for him. He absolutely loves his apprenticeship but may never have got it without diagnosis and adjustments made because if it.

Get the diagnosis, while it might not seem much help right now it could have a huge impact in the future.

It's a good thing that more people are being diagnosed and not dismissed as thick, difficult, weird, scatterbrained etc. What's the resistance to diagnosis? We can't have it both ways. We can't expect everyone to adhere to practices that favour neurotypical brains and then sneer when people who can't fit that mould seek support and advice on how to cope better.

How do you define 'mild' autism though? To even get a diagnosis it has to impact your daily life (I can't remember the exact wording) which in and of itself suggests anyone with a diagnosis does not have 'mild' asd.

Whilst I acknowledge strategies can be employed without diagnosis, for many families no one believes our dc are autistic until they have a diagnosis. Therefore schools etc simply won't employ the strategies our children need.

you don't seem to have considered what having a diagnosis does for the individual who has autism. Knowing why you may struggle with certain things whilst everyone else seems to find it so easy can make a big difference to your MH, your perception of yourself, figuring out how and where you fit in, in life and I think it's important for someone (especially children) to understand themselves.

How do you define 'mild' autism though? To even get a diagnosis it has to impact your daily life (I can't remember the exact wording) which in and of itself suggests anyone with a diagnosis does not have 'mild' asd.

Exactly.

Generally when people say "mild autism" they mean "well, Jodie's diagnosis it doesn't impact me so it can't be that bad". Which is utterly shit, really.

Just as PP said, all autistic traits are human traits. It's about how patterns of behaviour affect employment, social interactions etc. Just taking that one trait (inadvertently saying offensive things), can have such enormous repercussions if repeated across a lifetime.

I think you know all this though.

What would be defined as mild though? One person’s mild is another person’s living nightmare. My 2 older children are both diagnosed as autistic but present so differently. One has a learning disability linked to autism and the other aced her GCSE for example. The latter might seem like mild autism to some but it’s not. Her diagnosis is just as needed and important as her brother’s despite not needing an EHCP, or SALT, or play therapy, or DLA or anything else he benefits from.

Oh is this another one of those false naivety posts? Got suckered right in there didn't I

I personally think that a lot of adults suffering from addiction are high functioning autism.
A life of confusion and masking, impacts self esteem.

A person may appear to you to have what you call 'mild' autism when they are in an environment in which they can cope with the demands presented to them or they are able to mask to fit in.

Put them in a situation when the demands on them exceeds their capacity to cope and it's not so 'mild' then.

I think probably helpful for a child, not always helpful for an adult.

I was a weird kid, probably autistic and the older I get the more strategies I realise I have in place to cope. I won’t ever seek a diagnosis (so this comes with a HUGE caveat that I may not in fact be autistic - but neurodiversity runs in the family). But I also know I would be prone to saying “oh that’s the autism” and not employing coping mechanisms when I didn’t want to. I know I operate better without excuses and can see how I personally would use a diagnosis as an excuse (and I’m not saying other do, for others it’s a good reason, but I know how I find excuses to justify things to myself now).

I’ve also seen it family members who don’t even try and temper their inconsiderate and hurtful behaviours because of neurodiversity.

But I have already figured out who I am and how I operate in the world. I think children should be given the ability to do that with the maximum information.

I’ve just been through “the pathway” as they call it. I didn’t get a diagnosis, and in itself the process and the non-diagnosis has been v helpful. I’ve spent time with a professional talking through the “flags” that caused me to explore the diagnosis in the first place and im putting support in place to help myself.
however I wouldn’t ever describe myself as someone with “mild” autism or even “a little bit in the spectrum”. For me, there are real aspects of the criteria I scored highly on - and some of the coping techniques that autistic people use to deal with those may help me too.
in order to even get a diagnosis there needs to be shown to be a really significant impact to that persons life. So Im not sure what you mean by “mild” autism. If you mean “they’re not rain man” then yeah, that can happen, but honestly anyone who gets the diagnosis has been through an absolute mill of a process.
its 100% worth doing but please don’t diminish the community.

Adults were children once and just as deserving of knowing who they are, to have answers and reasonable adjustments .

Do you not even know that autistic people
spwnds their lives trying to fit in and beating themselves up when they don’t and screw up. It’s part of the reason why MH difficulties and suicide levels are so high in the community .

My middle daughter is being assessed by the NHS. We've been waiting years. If she is autistic it's certainly very mild. I don't think she will have to leave mainstream school for example.. but even being mild it does effect her. I can see it as I do have my suspicion that I am autistic myself. And it eats at your self esteem more not knowing to be quite honest with you. I always thought i was just a weirdo.. lazy.. bad etc etc I couldn't even acknowledge my own struggles to myself except as some kind of character flaw.
I don't want my daughter to feel that way. I want her to know that it's not her fault and also to see clear pathways of help available to her. Even though I'm sure she could just about cope with life without a diagnosis.. I don't want her to just cope. I want her to have the best life she's capable of having.
Autism doesn't mean you are stupid or incapable. It's just something that effects people in different ways that they sometimes will need support with. Some people need more support than others. There doesn't need to be any kind of negative narrative attached to the label.
This is like how dyslexia used to be when I was growing up. My best friend was dyslexic and she now has a masters degree. Yet at the time I remember my mother acting like it was some sad curse. And I internalised that.. but as an adult I see that all it means is that someone learns differently and needs different input to get the best out of themselves.
I feel this about autism.

Absolutely worth it. I’m autistic and diagnosed as an adult. I got good grades did well at school, work full time, mortgage etc etc. but constantly felt wrong and different. Always burnt out and full of self resentment I couldn’t cope. Cancel plans when I couldn’t cope so lost friends etc. palmed off with anti depressants or anti anxiety meds that made me suicidal. I basically lost my teens and 20s to poor mental health. I was just surviving. So so unhappy but looked fine to everyone else.

My diagnosis was life changing. Nothing actually has changed. I don’t get support or accommodations. No one makes allowances for me. BUT I know I’m not wrong or broken I’m just different. I know and understand my needs and therefore can accommodate them myself. Just one social commitment on the weekend. Plan own time. Don’t get frustrated when I can’t cope with crowds etc I just avoid these things without self hatred I can’t cope like others can. Because I’m different not less. I don’t have mental health problems anymore.

i have 3 autistic kids. One too young to really know his support needs. One needs massive support so diagnosis was essential for him. My dd who is high functioning and won’t need extra support just a bit of extra understanding when she’s socially inept is on the wait list for diagnosis. Just so she doesn’t face the life I had. Knowing yourself and understanding yourself cannot be undervalued. Of course my dd may not get diagnosed and if she doesn’t I will just explain I think she is literally everyone else in the family is and it’s genetic. She doesn’t need the official diagnosis if she doesn’t need extra support, she just has to understand herself and how to keep herself from burnout and self hatred. So I guess if you just want to understand diagnosis isn’t essential but you do really have to know

My daughter was diagnosed with autism at age 10 she was referred to assement based on schools opinion - if I’m honest I still don’t see it 🫣 the diagnosis has not changed anything for us.

A lot of parents don't see their childs' autism because they are autistic themselves and just see their behaviour as normal.

That was certainly the case for me when I was growing up.

I promise you not a wind up - don’t want to go into loads of details but essentially I and family members (who for complicated reasons that would be outing to say have a voice in this situation) are at loggerheads. I am fully prepared to accept that I am old-fashioned in my thinking and need to change if I am wrong and it would make a difference. But I just can’t escape the feeling that pursuing a diagnosis when (to use a PP’s language) we’re not talking about ‘profound’ (nb PP used to describe her own child) is not necessarily the right course. I just want to do the right thing.

You’ve given me much to think about - thank you.

I mean, this is surely the biggest catch ever - you just be wrong about this rather elusive description because YOU HAVE IT YOURSELF! No possible way of arguing your way out of it and somehow everyone else knows what’s best for your child…

I'm really confused by this dichotomy some posters are presenting that getting an ASD diagnosis means that you don't develop coping strategies, and if you aren't diagnosed, they you just learn to cope with "real life". My experience with my DH and DS - both autistic - is that the diagnosis has helped them to understand what strategies might help them with interactions and situations they find hard, because it helps to pinpoint what is difficult and offers pathways to alleviating/managing it. It is allowing them to develop very real, very meaningful lives that play to their strengths and let them find other routes round things they might struggle with.

Autistic adults who know their behaviours are genuinely upsetting for others and don't modify them are arseholes (Gregg Wallace) - with the caveat that neurotypical people who get upset about harmless autistic traits are also arseholes (does it really matter if someone doesn't make eye contact if they show they are listening in other ways?).

My DH has said to me that knowing his behaviours or thought patterns are due to autism isn't always liberating; sometimes he has that "I'm never going to be able to change this" frustration. We talked about this a lot before our DS was diagnosed because I was more in the "he'll be able to understand himself" category. On balance, we both think that frustration is better than not knowing - because actually, a lot of autistic traits can't be changed, or there is a great psychological cost to trying to change them. My DH - who can mask with the best of them - says he's a lot happier now he's more comfortable just being who he is and having found friends who accept him for that.

In my DS's case, his diagnosis means that he's treated as a child who, with a bit of extra support in particular areas, can succeed and be happy, rather than a child who is unmanagable, aggressive and rude. As yes, it was literally as night and day as that once I could say "he's autistic" rather than "if it turns out he is autistic."

To try and answer your original question OP, I would say it hugely depends on how old your DC is.

If they are at primary school, then bear in mind that very often any issues become much more apparent once they hit secondary. That was certainly our experience, and my DC's diagnosis (done through NHS at the start of secondary, after a long wait) has been great for helping us to advocate and communicate their needs to the school, as well as giving them a framework to understand their difficulties. I know multiple other 'mildly' autistic kids who dropped out of school in the first year or two of secondary as things just fell apart for them.

That said, we did later get my other DC assessed as a teen even though they were seemingly coping a lot better and had less obvious ND traits, as we felt it would be helpful for their mental health (they were having some concerning issues at the time) to have that understanding as they go through life. I don't know whether it was worth doing that or not, at the moment they're not fussed but I will ask them again in a few years!