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.

100% this for us.

I could almost have written this post.

There is no such thing as mild autism.

OP you fail to understand that nobody with autism traits will actually be given a diagnosis unless there is significant distress or difficulty being caused by those traits.

It doesn't matter whether it's a private or NHS diagnosis, they both work to the same criteria and there really is no wriggle room in my experience.

I was told very clearly by a private assessor that unless my son experienced major difficulty in 3 main areas that they can't diagnose him. It's not enough to just be interested in trains and bad at socialising, these traits have to cause real problems in your day to day living.

Nobody has a mild case of autism - you either have it or you don't.

I’ve DM’d you

When I read "mild", I read hidden.

I didn't join the dots until my daughter was 14 and was wondering did she have a spelling issue.

Suddenly I was going from site to site that was describing random little things that lead me to the realisation.

A huge one was sensory issues like noise sensitivity, and tiredness after socialising.

She has lots of great friends for many years but found socialising exhausting. I do too, so I thought it was very normal.

Not everybody has the perfect language but I do not my daughter has many quirks that tick many boxes, it just took a long time for me to realise they were anything more than her lovely personality.

She has no wish to see anyone and considers it her private business.
She does not want any labels put on her.

As an analogy - imagine if you had undiagnosed dyslexia and as a result struggled to learn to read and had low self esteem and confidence. You could try to implement strategies to improve your reading, but getting the diagnosis would be transformative as you could get the right strategies put in place and it would improve your self esteem knowing that it wasn't your fault.

So sorry, OP, to derail your thread but I think my DD (12, just finished Y7) could have written the first part of your post, @CaramelGhost. No issues at primary school (or none that I noticed, any way, although she’s always been very shy) but she’s really struggled so far at secondary school — not academically or in terms of behaviour, but lots and lots of ‘little’ things (and they’re just the things I see; I’m sure there are lots more I don’t) that together add up to more than ‘just’ shyness… I really want to support her so that she doesn’t burn out or have to worry about a breakdown, and am currently trying to work out the best way of doing that.
I’m so sorry you’ve struggled and really hope you can get support so you don’t have to keep worrying about the possibility of another burn out.

We don't really do levels in the UK. I've heard that some providers will do them, but it isn't the standard in the UK, because support needs change.

To answer your question though, yes I believe it is entirely helpful to get a diagnosis even if it is perceived by others as mild.

I am a late diagnosed adult, you could say that I presented mildly with autism, but mild is how you perceive, not how I live it. However to reach adulthood before receiving a diagnosis, everyone must have perceived my traits as being mild.

I'm an advocate for early diagnosis where ever possible though because along with my adult autism diagnosis, I also received a cPTSD diagnosis.

The way my assessor explained this to me was that you develop cPTSD from a substantial amount of time where your needs are not met.

I had a substantial amount of time in my life where my needs were not met. I didn't even know what my needs were, because nobody bothered to look into an autism diagnosis for me.

Instead I was labelled alsorts of different things: crazy ex-girlfriend material for having meltdowns when plans changed or I couldn't stick to my routines, difficult, demanding, cagey, bitchy for not having typical facial expressions and speaking quite bluntly, smart arse for having a lot of knowledge about certain topics of high interest, know-it-all for again having more knowledge about particular subjects, weird, freak, disgusting etc.

I have been called alsorts of names all of my life, professionally and by being bullied.

I didn't know why when I was at work, and a meeting in my schedule would disappear, it would send me into a spiral, or random teams calls without forewarning would give me panic attacks and I'd not be able to get my words out coherently.

When you think of autism as a spectrum, it isn't linear. It isn't mild to severe. There are obviously some autistic folk that will have persistent lifelong struggles with development and communication. They 100% deserve advocacy, but so do people who's struggles aren't persistent or consistent.

Before I knew I was autistic, there were thinks that I just kept trying to do that other people found easy, and I assumed that everyone found it as hard as I do to do those things but were better at hiding the fact that they found it really hard, which is just not true. Many people do find the things I find hard to do easy and natural to them. This landed me in several bouts of burnout, long term sick, disciplinary action etc. when suddenly receiving a diagnosis opened doors to support through reasonable adjustments at work.

I'd have found it incredibly helpful for school for someone to have realised back then, because the way I learn is different to how other people learn. This meant that years of depression as a teenager might have been alleviated.

Mental health statistics for autistic people are incredibly poor compared to allistic people. The rate of attempted suicides are higher, there becomes an increase in comorbid mental health conditions. The outlooks overall are very grim.

If you're female, the statistics are that about 30% of women in the general population will be sexually assaulted at some point in their life, but when you're autistic and female that figure almost triples. There are a lot of reasons why this can be but ultimately it's because of a social deficit. Whether that's an inability to communicate at all, or whether you understand consent, or whether you have a lack of awareness, or naivety about a situation, and not being able to read others intentions, but not realising you can't read others intentions.

As an autistic person, the chances are that you're more likely to be arrested, because autistic meltdowns can spiral without the right support, but also again, not being able to read others intentions, getting in with the wrong crowd, trying to fit in by doing daft things etc.

If you don't know you're autistic, and you are autistic, you don't really know yourself well enough to safeguard yourself from the above. You don't know that you need to support your mental health in ways that others don't have to, or that you need to be vigilant around the company you keep, and you don't learn techniques or skills to manage intense neurological distress in unavoidable situations, and you don't learn which situations to avoid.

Ultimately, to receive an autism diagnosis, part of the diagnostic criteria is that it has to have a substantial impact on day to day functioning. So again, the only "mild" is how others perceive it, and some autistic folk do perceive their struggles as mild and don't fully realise the substantial disadvantage they are at each day because the model for autism has been heavily based on young white boys with a diagnosis that has only over the past few generations evolved from infantile schizophrenia to where we are now with a better understanding of what it means to be autistic.

It’s a valid question but I haven’t voted because I think it’s a bit of both.

Ds was diagnosed at 3, and his outward presentation was subtle. It almost certainly wouldn’t have been identified without me asking questions, and having a background and a lot of experience with asd. Now as a teen, when his problems have intensified, he still doesn’t seem obvious to outsiders.

One thing that’s important to understand is that autism isn’t a cluster of behaviours. Those behaviours are manifestations of underlying difficulties in the triad of impairments. Behaviours can be modified, relatively easily, but that doesn’t change the underlying neurology. And of course, in recent years we’ve realised that attempting to modify some of the obvious signs of autism (such as stimming) is actively harmful.

Having a diagnosis helps us understand what we’re seeing, and work out why it’s happening. That can help inform our response - sometimes we need to be more patient, or provide more structured support. sometimes we need to prioritise the child’s need over our discomfort (eg the stimming example) and sometimes we need to hold a firmer boundary.

That can certainly look like “ah well he’s autistic doncha know” to an onlooker, but it’s much more complex than that.

He is entitled to services but they have been mostly useless, sometimes worse. And it has allowed camhs have used his diagnosis to repeatedly deny him much needed mental health support, so it’s been a mixed bag.

In terms of school support, and in healthcare the term “autistic” has been almost magical in unlocking compassion and flexibility.

One of my regrets was not sharing his diagnosis either him early enough. Children recognise they are different and will find their own explanation. It’s been difficult to shift his internal beliefs. But of course it doesn’t help when “autistic” is a playground slur.

At the basest level, a diagnosis is the difference between understanding your difficulties and feeling like an abject failure. In a demographic with high rates of depression and anxiety, it's important to recognise how much that understanding can improve one's self esteem. I spent most of my teens feeling like something in me was broken, wondering why I seemed incapable of making and keeping friends and why I struggled and failed at basic aspects of life. I was bitterly lonely, painfully anxious, and nearing suicidal; what about life was worthwhile if I couldn't truly experience it? A diagnosis at sixteen changed my life immeasurably. I made it through school, and then university. I have a part-time job in a field I enjoy, and I made friends with like-minded people. Diagnosis unlocked the ability to give myself leeway, patience, and forgiveness. It gave me a community where I could find others like me to share life experiences, hobbies, and coping mechanisms. Over the years my diagnosis has allowed me to join support groups, access advice from autism charities, and granted me charity assistance in getting a job.

Additionally, I simply find "mild" something of a misnomer. I would never say I experience the same challenges as someone with higher support needs, but that doesn't mean the challenges are lesser. They're more internal than external, for sure, but even people with what appear to be "mild" symptoms often struggle immensely with everyday life in a neurotypical world.

Mine was helpful because I got DSA at uni wich resulted in a free laptop with all my programmes loaded onto it, one hour mentoring per week, and free printing. Other than that it didn’t really help or hinder part from giving me a better understanding of myself.

Honestly there are so many threads on here like this that I feel like they must come from bots.
Like the government is preparing to overhaul the sen system and is laying the ground work by planting the idea that we all have autistic traits, diagnosis is not necessarily helpful etc etc.
Whether this is the case or not, you know this is controversial and I don’t buy the idea that you don’t have an agenda op.

DS2 has what you might call mild autism - what used to be called asperger's though he doesn't really present as such. I had no idea until he went to secondary school and a teacher picked up on it and the school had him diagnosed.

I wish I had realised earlier. I had a really ignorant understanding of what autism was. The diagnosis was long and thorough and I was especially shocked by the pre-school and primary school years questions, as DS's early life was very difficult physically as well as emotionally - and all of his symptoms or issues were ASD related. If I'd known earlier I could have made a huge difference to him.

The silliest things suddenly made sense and his school was outstanding at supporting him. For example, I used to use a lot of idioms like 'get your skates on' or 'put a wriggle on it' meaning hurry up. He only understood literal instructions, so as he had no skates, he would just sit down and play in his room, unaware we were in a hurry then bewildered when everyone said 'Hurry UP!' His teachers used to say 'finish that off tonight' and he had no concept that this meant: this is your homework, so he'd get into trouble and even into arguments where he'd say: you didn't set us any homework sir! The school sent messages to all teachers asking them to be very specific in instructions to him with no ambiguity. Life got easier for everyone overnight.

That is why I think diagnosis is so helpful. Tiny adjustments made a vast difference to him.

I was diagnosed at 24 and people who know me on the “outside” including my parents were confused and reacted like you…. i am able to mask to a huge degree.

In reality I was constantly exhausted, self esteem was on the floor, made bad choices in relationships because I didn’t “get” people and struggled to hold down basic jobs.

The diagnosis didn’t get me any NHS support or PIP or anything tangible. But it helped me understand my own brain, improve my self confidence and make adjustments to my life that stopped it being so exhausting and helped me get out of some relationships that I now know were very toxic.

I have some very basic reasonable adjustments from work (flexible start time) and am able to explain to my boss why some days I fly and other days I string a sentence together. I’ve found a workplace and career that suits my strengths rather than always trying to work in ways that didn’t suit me.

I’m also now happily married to a man who looks after me when I’m burnt out and exhausted and notices the things I find hard when others don’t.

Plenty of other people in my life question my diagnosis. Until you can see the state someone’s in when the outside world is stripped away, you have no idea. Somedays I come home from presenting to the board of a global company successfully and competently but then my DH has to help me undress, eat and drink…. Funnily enough, I don’t share those moments with people who have questioned it.

Op you have every right to ask about this in the way that feels ok to you. I have perhaps 6 friends whose kids have a diagnosis of autism and there is a huge range in their life experiences and how they are managing. Some kids couldnt access education at all and others are at university. So surely it’s ok to talk about autism as a range if it helps the op? Id say in all cases it has helped the families to get diagnosis, for many reasons.

YANBU. I have a 16 yo dc diagnosed on the nhs 8 years ago so I have lived experience of this for quite some time.

I get what you are asking. My DC’s school are encouraging me to get a diagnosis of autism. My child is very high functioning. The biggest issues appear to be transitions between activities. In reception class DC had the SENCO as their teacher and flew but in year 1 the teacher struggled to maintain control of their very lively class. From hearing stories from not just my DC the transition from one activity to another as generally rushed. The school stated that they know that they were already supporting DC in the same way they would if a diagnosis was made but suggested that a diagnosis would be useful when they move to secondary school (currently 5 years left at primary). I’m a teacher and recognise their traits but at home they generally cope with it without limited support. I have the paperwork to complete but I haven’t done it yet as I’m very much of the attitude that if they won’t be able to provide any further support for DC then why wait 2+ years for a diagnosis. In my opinion the teacher’s lack of organisation was the biggest problem. I met with them a couple of times but they managed to irritate me on the first meeting and I never trusted them as I have evidence that they lied to me on a couple of occasions.

I don't think that's meaningful without knowing why, though. Some of those kids will be cognitively average or above average but riddled with anxiety because of their social or sensory issues. Others will have learning difficulties as well as their ASD meaning that they are below or far below average cognitive ability. The former very likely will be considered in some circles to be kids with mild autism, but being of average or better than average cognitive ability does not make your autism mild.

And kids who manage absolutely fine at primary level with what appears to be mild ASD may find that secondary school is much harder as their peers go through puberty with all of its cognitive and social challenges and growth. I have met many parents (and I do mean many) who did not seek an early diagnosis for that reason only then to find themselves with a school-avoidant teen and starting a lengthy assessment process with critical exams on the horizon that their kid was in principle capable of doing if only they had had the right help and/or learning environment.

Yes, this.

Schools like to say that support is based on 'need', not diagnosis, but, particularly if your child is high-masking at school, then without a diagnosis, it's just your word against what the school (doesn't) see(s).

Especially when they have the hands tied with all of the children who actually present a problem for them, then yours are never going to get to the top of the priority list.

Plus in my experience, getting a diagnosis was extremely validating and after being continuously gaslit by the school, gave me the confidence and assertiveness to question and request.

Instead of using terms like mild or high and low functioning it is usually suggested that levels of support needs are used, level one is support needed, level 2 is substantial support needed and level 3 is very substantial support needed.

My DC has been diagnosed with autism privately. I was a bit shocked as I was expecting the assessment to come out as negative but had decided it was worth paying to know either way. The psychiatrist explained that she met the criteria in enough areas to be diagnosed autistic but there were certain areas she did not show autistic traits in. I think some people would describe her as having “mild” autistic traits as a result. The psychiatrist had also previously diagnosed her with ADHD, which I was expecting, and said that it was possible that some of the areas she met the criteria for in autism could ALSO be be explained by her ADHD. Therefore if we start medication for ADHD and those issues reduce it is possible “her diagnosis could change”.
She has been extremely relieved to be diagnosed with autism and ADHD as I think she was secretly worried she was “dumb” or going mad, so it is definitely helping her at the age of 12 to work out who she is and what she has difficulties with and why.
Certainly the school have backed off on the fines for non-attendance since the diagnosis.
Incidentally the school also refused to provide supporting evidence on the referral for a statutory assessment because a geography teacher she met 7 times said that she was fine in his class, and no other teacher “had time to fill the form in”. My guess is this poor geography teacher was trying to be helpful but did not have any SEN training (the school is very large so the SEN team don’t get involved unless you already have a diagnosis!) and certainly no understanding of how SEN present differently in girls.
Now I have a friend whose son is very upset about his ADHD diagnosis and has reacted in completely the opposite way to my daughter. He wants to be one of the cool kids at school and is desperate to hide his diagnosis for fear of losing his current popularity. My daughter (who appears to models herself on Wednesday Addams) doesn’t seem to have anything to lose. Her friends all have SEN or, interestingly, identify as gay or bi and so fall foul of the cool kids entry requirements anyway.
So I agree OP, it may be very helpful, life-changing even, for some and less helpful for others. The context of where that child is in their life is likely going to be very important in your decision.

I'm absolutely not questioning what you're saying at all, please don't think I am, but I do want to question what you've been told, with good intentions in mind. I'm just confused a bit about the psychiatrist saying that your daughters diagnosis could change?

My understanding was that they can't make a diagnosis of autism unless it can't be ruled out by other possible causes, had to meet the triad of impairments, have substantial impact on daily function and be present from childhood, because it is a neurodevelopmental disorder.

neurodevelopmental disorders don't go away, ever, that's why I'm confused how they've managed to make a diagnosis for autism if they think there's a chance that it could change.

It is true though that ADHD and autism are often comorbid, and certain behaviours can change with medication, so it might appear that some traits are lesser, infrequent, or in my case totally the opposite, I could finally focus and stay on task, but all my sensory sensitivities were extremely heightened, but I've never heard of a consultant psychiatrist saying that they are willing to change a diagnosis once medication has been trialled except in very specific cases where they feel something was done in error at the first appointment.

I'm confused because I was told the opposite, that they can't change the diagnosis once it's been given and that's why it's important that they get a full picture beforehand.

In any case, I'm extremely happy that it has helped your daughter understand that she just needs accomodations and kindness towards herself, 12 year old me really needed that, so it's wonderful to hear that there's more understanding and compassion around for our lovely young folk who are simply just wired differently, and that it's OK and should be celebrated.

I'm not that poster but to my mind:

"the psychiatrist had also previously diagnosed her with ADHD, which I was expecting, and said that it was possible that some of the areas she met the criteria for in autism could ALSO be be explained by her ADHD. Therefore if we start medication for ADHD and those issues reduce it is possible “her diagnosis could change”."

... means that aspects of DC's issues that were attributed to autism might feasibly be the result of ADHD instead. If DC start ADHD medication and see improvement in that issue, that issue can then be attributed to ADHD rather than autism (for which medication would have no effect).

Yes, I think this i it. My DS has ADHD and SPD and it can be difficult to understand which aspects of which are for which diagnosis. The rule of thumb is work to is that the ones that are positively impacted by medication are probably ADHD!

My younger dc has autism, diagnosed at age 8. Since autism was first suggested, his difficulties have escalated and I am immensely grateful we pursued a (nhs for what it’s worth) diagnosis when it was first suggested by school because it took ages. I hadn’t spotted it. This is likely because, having learnt more about autism, I am probably autistic myself so much of his l behaviour appeared normal to me.

is the diagnosis helpful? Well for dc2 it has been. We are under assessment for ehcp and the rest of his education is going to need to be very carefully planned.

what I suppose I’m saying is what presents as mild initially may change rapidly as it has for dc2 leading to significant levels of support being required to access mainstream school. Therefore a diagnosis is a nice to have for families to get that support from school as soon as it becomes necessary.

that said, in my experience, it’s a complete fallacy that getting the diagnosis gets support. I received the diagnosis by telephone in April 2024 and have yet to be invited to follow up with any paediatrics or similar.

Yes that is what he was saying. I don’t have it in writing yet as the diagnosis was only a few weeks ago and since then he has been on holiday. If I get it in writing I will try to come back to this thread and put an exact, or thereabouts, quote to add clarity.