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

You have just described my DD to a T

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.

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.

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

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.

Beautifully put. As someone who was diagnosed earlier this year, I can only agree with you completely. My diagnosis has improved my life as I can finally advocate for myself and say "No, I have a disability and I can't do that".

I appreciate that many people are of the same opinion as you. Many describe an autism diagnosis as a 'label' which is rather dismissive IMHO. I'm going to disagree with you but please don't take it personally.

An autism diagnosis is a significant medical diagnosis - just like a diabetes diagnosis for example. Nobody would suggest to somebody who had the symptoms of diabetes that they should avoid a diagnosis because it might give them disadvantages in their future lives.

If you have autism, it is much better for your overall health and wellbeing to get a formal diagnosis. Without it, an autistic person and those around them are unlikely to truly understand what their needs and difficulties are, even if they are self-diagnosed.

I'm autistic. I would say I have what the OP calls 'mild' autism, although like other PPs have said, I don't agree wiith that description. 'Mild' autism is usually describing somebody who is very good at camouflaging their symptoms so it seems mild to onlookers but it is not mild to the autistic person.

I was diagnosed in my mid 50s. It is easy for people to bully me because I am unable to understand body language, facial expressions and inferences. People don't realise though because I am very bright and very well-educated. Due to this lack of understanding I am very vulnerable to bullying and in actual fact I was living with domestic abuse for many years. If I had known about being autistic years ago, I could have been made aware of how to recognize bullying and abuse and how to deal with it much earlier in life. This has obviously all had a massive impact on my wellbeing and to be honest also my finances because I had to get out of the rat race.

Living as an autistic person, especially without a diagnosis, is like being a square peg in a round hole. Everything about life is much more stressful. That has in turn lead to a chronic physical illness, which has made me too unwell to work.

An autism diagnosis does also open other doors. Today, for example, DC2 has received a ££££ grant due to their diagnosis. (And very much deserved).

In short the risks of not getting a diagnosis are much greater than any disadvantages. I was diagnosed 3 years ago and so far it has only helped me. It has not once disadvantaged me, although I accept it might do occasionally in some peoples' circumstances.

Well, yes, there are always going to be people who are convinced they have X when they don't. Just like there are people convinced they have various physical conditions that they don't have.

But that's what the diagnostic process is for, and the ADOS assessment is long, complex and not something you can cheat your way through. Someone who doesn't have autism is not going to receive a diagnosis that way.

The problem is, some people don’t have the conditions they think they have. That’s the point. That’s why a robust assessment is needed. Its very unfortunate that private providers can charge a small fortune for this.

The fact that private providers almost always validate that contributes to the increasing certainty adults have that they should be diagnosed. It's self fulfilling.

I don't understand the problem with people being diagnosed with conditions that they have, though. I mean, you wouldn't tell someone they shouldn't pursue a private diagnosis of say, diabetes, would you?

The vast, vast majority of people aren't going to spend thousands of pounds pursuing a diagnosis for a condition they don't have, and there is practically no financial or social benefit to an adult diagnosis of autism for the majority of people - it just tells you what you know and allows you to be kinder to yourself.

People trotting out tropes about how every woman now thinks she has adhd and every person with poor social skills are why I won’t get assessed. The idea of being observed and speaking about myself makes my skin crawl. The idea of speaking to friends and family about my mental health and potential neurodivergence makes me feel sick. I had postnatal depression and was in antidepressants for years and no one but my husband knows.

It doesn’t matter if someone is certain they have a condition - self diagnosis isn’t valid. A clinical assessment by an appropriately qualified professional is required for diagnosis. In my line of work I see plenty of adults who are convinced they have a particular mental health diagnosis or neurodivergence when they don’t. TikTok/social media holds a lot of responsibility for this.

Also I don’t think parents are seeking a diagnosis for their child to explain ‘bad behaviour’. There’s page after page on this thread of parents describing why they sought diagnosis for their child, none of which have been so simplistic.

the reality is more that very, very few adults are going to spend thousands of pounds pursuing a private diagnosis unless they're almost certain they have that condition.

The fact that private providers almost always validate that contributes to the increasing certainty adults have that they should be diagnosed. It's self fulfilling.

There should be a requirement for a) clinics to provide statistics on the number of diagnoses provided b) a provision of a central, independent "mystery shopper" regulator service, who visits clinics to see if they will diagnose almost anyone through the door.

The private market is essentially unregulated, i don't know anyone who's sought a paid for diagnosis who hasn't come away with either asd, adhd or bipolar.

This is trotted out as a "gotcha" on these threads all the time, but the reality is more that very, very few adults are going to spend thousands of pounds pursuing a private diagnosis unless they're almost certain they have that condition.

With children it's a little different as there are cases of parents pursuing a diagnosis because they think it will explain bad behaviour, but it's very different for adults.

I agree with @NuovaPilbeam unfortunately. Even within the NHS the diagnostic process can be lax and haphazard, influenced by the assessing clinicians beliefs about neurodivergence and time pressures. My experience is more with ADHD assessments for adults, I believe the diagnostic process for children is more robust (multi disciplinary, observations and clinical history taking). I know that adults can meet a psychiatrist for half an hour and come away with a diagnosis of ADHD, which is just not a valid assessment IMO. I have significant concerns about the validity of the assessment processes, even more so now that private providers can charge a small fortune and are largely unregulated.

You don’t just rock up, answer a few questions and get a diagnosis 🙄 It’s a very lengthy in-depth process.

There are loads of places where you do in fact just rock up answer questions and get a diagnosis actually (some times there's information to complete in advance but it's still based on self reporting). My nephew went to one after years of issues at school, and was "diagnosed" level 1 autism & adhd. It was a provider recommended by loads of other parents.

After some thought and discussion with him, they chose to disregard it. Within a couple of years he had matured and the school issues waned. He's now a confident, happy adult, he did well at uni and has a decent job & a lovely girlfriend.

The private market is essentially unregulated, i don't know anyone who's sought a paid for diagnosis who hasn't come away with either asd, adhd or bipolar.

That's true but the diagnostic process is often where evidence starts to get professionally compiled, you acquire your feedback reports and next steps are looked at.

I'd never have been offered post diagnostic support for autism nor would I have considered I am also dyspraxic if it weren't picked up at my post diagnostic support appointments, meaning more feedback reports for evidence for more support.

The diagnosis might not be mandatory to access these supports but in many cases it can be essential to getting the right sort of tailored support.

I’m not sure where you live but where we are, without a diagnosis the school were disgusting. They treated me like I was something on their shoe and treated him like he was a problem. We were totally unable to apply for an EHCNA because the school didn’t believe us, and the council refused to do anything without a diagnosis even though needs were very clear. Sometimes you do need a diagnosis to open that first door.

In my experience you need both. I have found all sorts of organisations far more receptive to requests for particular seating positions, flexibility about wearing wristbands, a quiet waiting area, queue skipping and all kinds of other things if I tell them my DC has a diagnosis of autism and needs x, y and z. Similarly, however “needs based” school support is meant to be, my child got an awful lot more understanding and accommodation once they had a diagnosis. Just saying my child needs x, y and z because that’s what they need tends to get me dismissed as fussy, neurotic, pushy, gaming the system or trying to get access to things we aren’t entitled to.

That’s not ideal, that not necessarily the case for everyone, but it is how it worked out for us.

The MH stuff and hospital passport you would which are hugely necessary and pretty bespoke to autism.So diagnosis is crucial for those reasons and are some of the reasons my DD’s team pushed for diagnosis .

Most of those aren't based on diagnosis. They're based on needs. You wouldn't automatically get many of those things with a diagnosis

The support you can get for a neurodivergence diagnosis is entirely dependent on what the diagnosis is.

It got/is getting me reasonable adjustments at work
Additional sick leave before triggers
An adult social care assessment and priority on social housing bids/the opportunity to live in assisted living
A cleaner
A PA
PIP
A better understanding of my mental health from the community mental health team who have taken a completely different approach and offered alternative therapies

It might get some people with other ND conditions

Extra time on exams
Health passports for hospital visits to specify their needs
Compassion and patience when processing information

Such as what?