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.

The problem isn't us accepting ourselves the way we are, it's society that doesn't accept us

It helps parents to seek tactics that they are trial with their own kids.
It provides understanding, you can't judge a fish by how it climbs a tree.
As the child reaches puberty their struggles may become more pronounced. When the struggles they have increase in the teen years, a diagnosis gives then opportunity for support. The number of teens I have taught who finally got a diagnosis in their teens, but if they had been able to access support earlier (and not been on a waiting list for the diagnosis) then they may have struggled less, and have the much needed support.
As yet, i have never met a kid or adult who has wished they had not sought a diagnosis.
A diagnosis helps people to understand themselves. I read something where they said a zebra around horses wonders why they are different, but then when told they are a zebra they understand themselves more.
I have recently at 38 been diagnosed with adhd. I can't explain how much I wish I had that diagnosis as a child or teen. I would have understood myself more, given myself grace instead of being so harsh about myself. I also now understand the areas I struggle in much more clearly abd have worked to improve those using tactics others have shared with me. So beneficial.
What a parent sees, isn't always the whole story. We see only the tip of the iceberg with what is going on with our child, there is a lot more going on in internally that they might not be able to articulate and share.

It’s not a disease.

“ He said it allowed him to understand why he struggles with certain things other people do not, though he had been successful in life nonetheless. Could we not accept ourselves as we are, if we don't get a name to put on it? Don't we all have to find ways of managing, whether we meet a certain list of criteria or not?”

He is unusual as the stats show 70-75% are unemployed with those that do work hugely under employed.

No “we” can’t find ways of managing because tjose of us with autism have our lives significantly impacted by our disability. Do you tell the more visible physically disabled to just find ways of managing?

Having both an undiagnosed and diagnosed child I would say, in my experience, a diagnosis improves access to support and reasonable adjustments.

My undiagnosed child (DC1) struggled throughout school as needs were ignored and the school did not have the resources to support them. The school stated that funding was diverted to children with more severe needs.

My other child (DC2) who is diagnosed, has an EHCP which has enabled access to support, Therapies and a specialist school placement. They are thriving, meeting their full academic potential and have been predicted to get good GCSE grades.

in hindsight, I wish I had pushed harder to access the right support for DC1.

Imagine you go through life, struggling to make friendships. You think you have friends at work but when you leave, and those people never speak to you again, you are left confused as to why. You have no one to spend time with at weekends. No one to invite to your birthday. You try, you really try. You take up hobbies to meet people, you take an interest in the people around you, you drop everything to help people when they need it. But nothing seems to work. It's like you're always on the outside, looking in. Like everyone else has been given this instruction book on how to be a good friend and you missed it. You start to think it's you. They you're únlikeable. That something is inherently wrong with you that people don't want to be with you. It is exhausting trying to do what everyone else seems to do naturally. You try to copy them but feel like a fraud. You feel lonely and useless.

Then imagine finding out you're autistic. That you have 'defecits' in your communication skills which you had no idea about. That this is the reason why you struggle. It's not that you haven't tried hard enough, it's not something you've failed to fix, it's not that you're a bad person. You're just neurodivergent.

If you don't know the reason why you can't manage, you can't put in place the strategies you need to help. And the self forgiveness for your own perceived failings.