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 helpful for my son. Because without his diagnosis we wouldn’t get an EHCP, which means his new school would only have his old schools saying on what he’s like in class. Which is just so wrong, when a lot of his “weird” (yes a teacher has used that term) behaviour can be explained and understood through his diagnosis.
It also means we can get him access to things he needs to continue his education.

@NCdoesexistno I don't think the wording of 'milder' is helpful and may be quite inflammatory but I think I get what you are trying to say.

I have 3 DS who all likely have ND. DS1 ADHD, DS2 ASD, DS3 Asd & ADHD. Wife & I and lots of friends work / worked in this area so pretty confident that this is the case.

HOWEVER we are only pursuing official diagnosis for DS3 as he is impacted and struggles due to these conditions. We have discussed with DS1 &2 whether they would like to pursue a diagnosis but both have chosen not to and have found ways to work with and channel their ND and are doing very well at school / college / work / socially. It hasn't always been easy for them but we have offered support and strategies to help them. Most importantly, we have a lot of conversations about understanding themselves better to be able to identify patterns of behaviour and plan solutions for themselves.

A diagnosis doesn't open the door to as much support as people seem to think so we have balanced the stress / upset around assessment with what they would actually benefit from. A diagnosis can also be a barrier to certain careers etc.

We have only chosen to pursue diagnosis for DS3 as he clearly is much more impacted and even with all of the support that we have given he still can't have a 'normal' life.

No such thing as mild autism.
just different. Look into “spikey profiles” and you will see what I mean.

as a late diagnosed women in a spicey household (ie kids who have also been / or in process of being diagnosed) it has been very helpful to name an underlying contributory factor why we can hyper focus when others cannot or when we find certain things seemingly more difficult than others. Whether that is lights or noise or clothes or weather or other people’s behaviour.

we are a successful high achieving household in various different planes of life. However it can feel very lonely when you think you are the only one who needs to wear ear plugs in the canteen or a sleep mask to fall asleep or cannot wear the required uniform because it is scratchy or finds humidity more tricky than their friends etc etc etc

also means doctors and other professionals can understand why they may need to approach a situation differently to their norm. For example my children do not notice they are in pain until it is completely unbearable. Ie they go from zero to out of control in seconds. Therefore if they are asked “is that sore” you cannot accept that first answer and may have to come back to it.

ditto any discomfort. Eg other people trying to take advantage or encroaching on their space. It means they are incredibly vulnerable and need someone to advocate for them at times. Not to infantilise them but to support them and to be very active in helping them to name their feelings.

would my children shout if someone tried to kidnap them from the street or would they ask someone to stop because that someone was hurting them …… perhaps not. As their usual response to anything unusual can be to go mute and / or hide.

they currently require hands on advocacy.

and that is ok. I am their parent and I am up for that. Especially knowing they are neurodivergent. Where it is possible to see developmental delays in some areas by up to 30%.

means you can parent effectively and advocate effectively.

Yes. This. So well put. Thank you for articulating it @BogRollBOGOF

I agree that a society with more built in support for aspects of autism would be helpful, but that wouldn't negate the need for diagnosis because the cause of the symptoms is key to choosing the right support.

@WasThatACorner I think the key difference there is that you gave your children the choice. If a child actively didn't want assessment (and was old enough to understand what that meant), I wouldn't force it. OP hasn't said that the child in question is resisting assessment, or even that it's been discussed with the child. It may not be age appropriate to discuss with the child, but obviously the child not wanting to be assessed is a major reason not to assess. At one stage we pulled back from DS assessments because he said he didn't want anything more, and revisited it about 3 years later.

Such as what?

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

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

I can absolutely see why if a diagnosis of anything would open the door for these things, I would grab that diagnosis.

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 .

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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".