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.

It’s not about ‘cheating’ the assessment - in some cases, as I’ve already described, assessments are not being carried out thoroughly which can lead to an invalid diagnosis. Someone should not be diagnosed with ADHD from meeting with a psychiatrist once for half an hour, and that’s what happens in some cases. ND assessments need to be thorough and multidisciplinary.

Then that's an issue with the specific provider, not with adults seeking diagnosis.

I never said it was an issue with adults seeking the service? You seem to have difficulties understanding @tumblingdowntherabbithole or you’re just being combative, so I’ll leave this here so not to further de-rail the thread.

Yes, I probably am coming across as unintentionally combative or lacking in understanding.

Because I have autism - a disability that means I struggle massively with social interaction and communication, especially on the internet when I can't see people's facial features or hear their tone of voice.

It's interesting that people no longer want to communicate with me when my disability becomes visible and shows itself, though. Instead of helping me understand, I just get shot down. Oh well, it happens a lot on here so I should be used to to it by now.

Kindly, an autism assessment is entirely unlike a diabetes diagnosis in which a glycated hadmoglobin or glucose test measures a raised or lower blood sugar level. It’s a description of disparate symptoms, and increasing on this thread it appears that the scrutiny is very much hit and miss.

If your son is in receipt of ££££ then I suspect he in entirely in the group where a diagnosis is very clearly true and important. I have been very clear that I am not talking about these cases.

I do entirely accept everyone saying that what is called (and not just by me!) “mild” autism may often describe children who are masking so significantly that they are setting themselves up for a breakdown in later life, and we don’t really have any way of knowing that, given we’re talking about masking. I find the argument that the primary age manifestations are less apparent than at secondary a very compelling one and to those who doubted me like @Locutus2000 @SomethingInnocuousForNow and @ExtraOnions I would say my view really has been changed here.

You have just described my DD to a T

You were asking whether there were ‘material benefits’ to having an autism diagnosis for the ‘mild’ cases as you call us. I have given you several examples of material benefits, or the opposite in my case of being undiagnosed, but you still don’t accept it. I don’t think and of the problems I have described are minor.

DC2 is also what you would call ‘mild’. They were diagnosed age 21 because nobody noticed before then - not even me. They are currently a university student, studying a STEM subject. They have received the grant to study abroad, which is an incredibly brave and difficult thing for them to do.

I was making a fairly silly comparison between diabetes and autism diagnoses to help make the point clearer that an autism diagnosis is not just a label but a significant medical diagnosis, just like diabetes. I have given you several examples from my lived experience of why that is the case.

Exactly. It makes it easier to explain why I struggle with certain things. One of the things I struggle with is communication. I had an issue relating to this a few years ago. It meant when I apologised to my friend, I could say "because I have a disability which means I struggle with x, y and z. Please can you do x, y and z for me. Thank you '

An alternative to an asd assessment is a speech and language assessment. You do need to find an experienced therapist to do it - the overlap between asd and speech and language is huge. A speech and language assessment will pick up issues - if you don't want an asd diagnosis this is ideal.

If you think about the difference between primary and secondary (generally speaking)

Primary: usually in the same classroom for the whole day with the same kids and the same teacher. Smaller building, much smaller number of children. Break times are for playing games. Often growing up with other children who have known you since age 4 and so are used to your 'quirks'. Your teacher knows you because they spend all day with you and so know what adjustments they may need to make for you.

Secondary: different classrooms for each lesson, different teachers, often different children. Moving around a busy, noisy school when the bell goes. Break times are for sitting chatting, which you may find difficult because of social communication difficulties. Teenage friendships are different to little kid friendships and you have to try and understand the nuances and the social expectations to fit in. You will be in a class with a lot of kids who don't know you, who might think you're bossy or pedantic or talk too much about yourself or maybe you don't speak and they just think you're odd. There are more rules - actual school rules, social rules, unwritten rules.

This is why we sought assessment in primary school - because yes, DD was coping there but her autistic brain is likely to face far more challenges when she moves to high school and we wanted to be able to prepare her and support her in this.

Apologies haven't read entire thread but OP I'm in the same position. I always felt that because I could see traits but they were 'mild' I decided against pursuing a diagnosis.
17 years down the line and we're seeking a private diagnosis with urgency as the impact on mental health has been severe.

So , my advice is seek one as soon as you can!

This!

no other word needed.

Exactly! This is so helpful, and puts words to my post above where I say that this thread has really enlightened me to the value of identifying what at primary might seem mild, in preparation for secondary where the challenges are much more profound. Thank you!

My DS is 'high functioning' autistic and he has ADHD also. Diagnosis had been life changing changing for him. I'm absolutely sick of comments from people saying he does not look autistic or he copes really well. No, he doesn't! He self harms, has clear suicide plans in place. He struggles every day with social communication and relationships. What might look like 'mild autism" is impacting every aspect of his life. Diagnosis has meant the school must act and the support has been instrumental for him which has enabled him to access school life so I would always push for assessment and diagnosis to enable young people to fully access all opportunities available to them.

Apart from the comparison to a diabetes test, I think this all sounds very fair!

Who diagnosed you here? It can't be me given what I actually wrote. You seem particularly dogmatic though given how you post and what you've interpreted as the reason why I "diagnosed" you. Seems like you're expecting an "attack" where there's none, perhaps because of the actual reason you made the thread?? Oh well

By the way, no one can be "diagnosed" online. People need to stop saying that like a gotcha.

However...to copy your style of comprehension or perception and declaration: I'm off to diagnose more people on mumsnet now that I've been given the appropriate title of a medical professional with the power to do that online.

You also haven't been "diagnosed online", I don't think it's very fair to minimise the diagnosistic process like that.

Agreed. Quite a ridiculous thing to say and I find it a bit silly when people say that.

This has been my experience too, and one of the reasons why I stopped doing assessments. It felt too subjective and prone to bias. I now advocate for more accessible supports, not more diagnostic services.

Generic support is never going to help somebody with autism like me or my children. The fact is the traits we have whilst we can try to learn to manage better aren’t going to go away. I see enough ignorance from NTs with our autism diagnoses let alone without. Really don’t want NTs assuming we’re all the same and my children and I can just try harder to eradicate any traits we may have that impact life. Care has been so much better for my dc post diagnosis.

Even worse is when autistic young people, girls in particular, who have coped with the structure of school, go off to university and simply cannot cope at all.

It is one of the trigger points for autistic young people because of the lack of structure, the social isolation - maybe living away from home for the first time and having no friends, seeing everyone around them form friendships and join clubs - and the independent studying, with so much free time.

This is when some families can't ignore it any longer.

mild can escalate in later years, and it’s insanely handy to be able to let people know if things get stressful that a person has autism- people understand tk at least give space. I always wondered it too, but db has progressed since he was first diagnosed and being able to explain to people is priceless

I'm AuDHD. Diagnosed as an adult. Do I get any support other than my adhd meds, no. Does it allow me to be kinder to myself and forgive myself, yes. Does it allow me to specifically research strategies to help me cope and fit it both socially and in the work place, yes. It also allows me to understand why my children and I get stuck in negative spirals (both of them on the spectrum) yes. And therefore enables us to look at our behaviours and work out how to reset. Mild autism in my opinion doesn't exist. It's autism in a person where the CURRENT set up works for them. As they grow up or life changes, the impact upon them can be huge and they no longer present as "mild".

I agree OP. There was a woman recently who (low and behold) had her diagnosis in her late 30’s and was arguing that her ASD affected her as much as it does children with EHCP’s - who will never be independent- ie won’t be able to work without significant support (so who is going to employ them) never get married , have children etc..

This woman had a successful career, was married, had 2 children and was arguing against parents of children who have significant ASD (and cant communicate) that ASD is all ASD. It was sickening. That’s why I don’t think ASD as a general term is helpful at all as the two end of the spectrum are so vast that they are like night and day yet she was so desperate to be included in the label. I think they’ll change of the diagnosis name/s in the coming years because its too broad

To add, other people who were diagnosed as adults could understand and absolutely acknowledged what we were saying and they agreed that the situations were vastly different.

Secondary is where my daughter struggled - too much pushing and shoving in the corridors, the sensory stress of the uniform, too much structure and too many rules! Fortunately she has no social or communication issues, so break and lunchtime are OK and she’s joined lots of clubs.

I don't think you have really addressed anything I've said here, you are very focused on your own particular experience.

You found your diagnosis helpful and without real downsides. That's great.

The OP is asking about people for whom the advantages are less clear. And there are people like that - despite your personal experience, an autism diagnosis is nothing like a diabetes diagnosis, and anyone who understand how conditions come to be defined medically, and how neurological and psychological conditions are tested for, and how their descriptions vary by time and place, will understand this.

It might be worth considering that for some, it is entirely possible to gain self-insight and managing mechanisms that are effective without an official diagnosis. Perhaps that's not true for you, no surprise obviously, but not everyone has the same experience you do.

When a young person who has been given a diagnosis grows up, there are potentially real and significant problems this could create. People now think so much in terms of accommodations they can be given, they forget to stop and think - ok, what if my child goes into a job like finance or academia (for example there could be many others,) and wants to apply to work for an institution in another country, maybe for the lifestyle, maybe for the money or career progression. Maybe to follow a spouse who is from that place.

A very real possibility is that an application to immigrate could be rejected. Similarly this young person grows up and wants to become an aircraft tech or work in mapping in a military setting, and then finds that's not a possibility.

These are significant and serious impacts and need to be considered as such.