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

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’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.

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.

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.

@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.

From experience - 100% this.

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!

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."

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.

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.

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 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.

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 .

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.

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.

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

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

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.

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.

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.

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.

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.