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.

To address your second bullet point about circular logic:

I have a sibling/cousin/relative on the spectrum (trying not to be too outing..), who was diagnosed with anxiety/depression and discovered through counselling they were actually autistic. Parents response was to say "we knew you were quirky/unique but didn't want to label it and we loved you anyway..." which relative was furious about and now constantly posts stuff about being autistic on social media as it's been like a revelation for them. This has really informed me and one of the reasons I'm pursuing a diagnosis for my child. I don't want to make the same mistake and then have my child question why I didn't get him a diagnosis when he clearly felt a bit "different" in years to come.

Having said that though, his school are fully on board and helped with referrals. So I am in a different situation to you if school have said your child doesn't need a diagnosis.

Also, I'm a bit confused by the psychiatrist who has said that the autistic traits may be examined by ADHD (not doubting that's what was sajd, just it seems odd!) because part of the assessment criteria is that the traits seen aren't better explained by other conditions. I suspect once the report comes out it will be clearer but the social communication points (except interrupting) aren't things caused by ADHD as well so it's hard to see how someone could meet the diagnosis criteria for those but it be explained by ADHD. Some of the sensory traits, yes.

I have absolutely no doubt that my DS is autistic. His teacher spoke to me about this when he was about 7 and she said at the time (she was very kind and honest about it) that he wasn't 'bad' enough for anything to really be done about it, certainly not for an EHCP, or statement as it was at the time but that we should learn to, and more importantly, help him to manage certain behaviours. It was so helpful to us and we never felt that a 'label' would be in any way helpful for him, but did speak to his teachers about any concerns we had. He's 21 now, just finished a great apprenticeship and is doing great.

I don't think there's a right or wrong answer to this question, I think it depends on the child.

For what it's worth, the psychologist leading on DD's diagnosis said they'd never seen a child with such positive school reports come through their clinic before (we used another third party for the non-parent assessment), but that she was most definitely autistic - just very very good at masking.

As so many others have said, there is no one-size-fits-all right or wrong answer. You need to ask what the potential benefits and disadvantages of a diagnosis would be to your child - what are they struggling with and how, if at all, might a diagnosis help?

One of my children has an autism diagnosis - it is "mild" in the sense that if you met her now, or at almost any stage of her life, you might very well not think there is anything different about her. But she was diagnosed as part of a package of assessment and treatment when she was extremely unwell with an eating disorder at a very young age, was unresponsive to standard treatment and almost died several times. Essentially her autism was mild until it was life-threatening and the diagnosis played a part in her recovery, and ensuring she is in the right environment to remain well and her needs are met so that they remain "mild". Had she not been ill, I think she would have been as well served by a move to a small, private school and a few other adjustments without a diagnosis. But equally, had we known earlier, we might have been able to avoid a horrendous few years. Who knows?

Another of my children has an ADHD diagnosis and she finds this life-changing because it explains to her why she struggles with certain things, and she feels enormously better about herself as a result. The impact on her confidence and mental health has been enormous, even leaving aside the benefits of extra time for exams and medication.

Ultimately my experience is that is with these kind of children you are flying blind to a significant extent. There are no guarantees, and no perfect options, so do your research then pick a lane and accept that with the best of intentions it might not be the right one.

Before this thread, I would be quite surprised if I am, given that I have made it thirty plus years with no social or communication problems, anxiety, masking - but it seems from here that the number of things classed as ASD is even wider than I thought. So maybe?!

If using clunky language (I’m still new to this world) or presenting discussions in ways that people find offensive is a sign of ASD then I suspect more people than we ever thought would be diagnosed. But that is exactly my query - if this is the case, however useful would a diagnosis of ASD be to me?

(Does seem ironic m that multiple posters have been at pains to emphasis how extremely hard it is to get a diagnosis and then I have just been diagnosed online…!)

My kids at ages 11 and 15 were both later getting diagnosed. Understanding the reasons for their behaviour is really helpful. You'd probably describe them both as mild, but they need support that others may not need and they both struggle with a lot of things (they are both bright and don't cause issues at school so they were under the radar for a long time)

A child having tantrums doesn't make them autistic. All children have tantrums, I've seen adults throw a tantrum. That's not autism, it's a child who is either stressed over something or mad they aren't getting their own way.
I'm still struggling to see what the point of your thread is. You briefly mention your own child. Do you think they're autistic but school don't (you said school won't make a referral). If the only reason you have for thinking she/he is autistic is that they has tantrums at home then they probably aren't autistic so views from parents whose children actually are autistic aren't relevant. You can't compare a situation of a child having a tantrum with a child who is autistic, even of you want to dress it up as 'mild autism'.

I'll bite (all my DC have ASD but have literally nothing in common. One with severe learning difficulties, one much more high functioning but really not functioning at all). Could you please let me know what you think 'mild' autism looks like????

Correct! Everything inside me rails against it too and I absolutely don’t want to dress it up as ‘mild autism’. Because as you say, children (and adults!) have tantrums - it’s life. But people seem to - all the time - and parents and kids now seem to need to have the ‘tools’ to deal with them. I’m wondering about what to do, and trying to keep it about broad principles without getting sidelined about my particular case (because nobody here knows the individual details so can’t speak to it).

I mean "presenting discussions in ways that people find offensive" is a trait of being autistic, but it is just one trait.

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

My guess is this is about a stepchild, hence the talk in the original post about parenting boundaries etc.

My ds has severe/ profound autism. As time has gone on and the autism dx has changed this dx matters less and less. It doesn't defined great deal now as so many people with the dx present differently. The autism dx doesn't open doors to support etc as it once did, I suspect because of the volume of people with the dx it isn't cost effective.

I have an elder ds too who doesn't have autism, he's very bright and very sociable etc. If I supspected he had autism i'd look at what he was struggling with and look for a dx around that eg if he had a mental health needs i would look to get that addressed, if he had learning needs I'd look at that. I'd do this purely because I believe this would be more helpful to him.

So let me get this straight
You don't think your child is autistic
School doesn't think your child is autistic

But you've started a thread to make a point about other people getting children diagnosed when it could just be normal tantrums in your opinion?

I'm sorry I've even shared anything about my experiences with you.

There seems to be a lot of examples of using assessment and diagnosis interchangeably and diagnoses coming from a random range of people from teachers to counsellors.

There is a very specific diagnostic criteria that must be reached in order to confirm an autism diagnosis. There has in the past been a lack of confidence in private adhd and autism diagnosis due to less rigorous assessment and accepting more self reporting than an NHS assessor would do.

I am not diagnosed as neurodivergent and neither are my children. I suspect that I am and my children are also. However, I am not an assessor and therefore not qualified to make that decision. One may suspect or wonder, but unless you’ve got through formal diagnosis you can’t claim to be neurodivergent.

A previous poster described their autistic experience of work, I can 100% relate to this and the physical pain that communication, anxiety, sensory and repetitive behaviours cause me. I know people think I’m weird and always have done, I know (often long after the fact) I’ve misunderstood or got something wrong and I’ll torture myself reliving these things for life. But I’m not autistic, I’ve never had an assessment and not been diagnosed. I just am someone who struggles with these things.

My child found it incredibly distressing every year at primary school when they would mix up the classes and he wouldn’t be with his friends. When I said to school that he sobbed himself to sleep for the first month of every term they shrugged and rolled their eyes, thinking I was making it up. Then after diagnosis when the educational psychologist said to the school that he shouldn’t be separated from his friends as he was likely to find that change incredibly distressing, they actually listened.

Worth it for that alone.

Kindly, autistic people are autistic with or without the diagnosis. There were autistic people before the diagnosis was created in the mid 20th century, and there are autistic people in remote communities with no access to diagnosis.

If you think you are autistic and that a diagnosis will benefit your life, you should go for an assessment.

Edited to add: the viewpoint of only those with a formal diagnosis are autistic, would be a classic example of cognitive inflexibility and black and white thinking - which is an autistic trait.

I agree OP.

Many of my family members and friends have received an autism diagnosis recently, none of them would say their autism severely impairs them. A couple were diagnosed over a Zoom call which I find highly dubious, they had not even met the psychiatrist diagnosing them.

Well you can. My dd was classified as autistic before her diagnosis by her NHS team and my son is currently being treated as autistic now and hasn’t got his diagnosis yet. He is autistic now and will be when he gets his diagnosis. I wasn’t diagnosed until I was 55. I was autistic from the day I was born and all the traits I had my entire life were there from birth. It’s not my fault they weren’t picked on and the diagnosis process was ( and still can be) very stereotypical and male focused.

It’s also a trait of just ‘human interaction’…? Is ‘finding stuff offensive’ also a trait of ASD? What about acute curiosity about people’s family? Honestly the net keeps getting cast wider.

Parenting boundaries yes but also parenting expectations? Some people might think some behaviour is more normative than others?

It’s also a trait of just ‘human interaction’…? Is ‘finding stuff offensive’ also a trait of ASD? What about acute curiosity about people’s family? Honestly the net keeps getting cast wider.

The vast majority of autistic traits are normal parts of the human experience - the difference is that when you're autistic, those traits have a severe and often negative impact on your day to day life.

Think of it like a headache vs a migraine. A headache is something everyone gets but that can generally be dealt with by some ibuprofen and some water. Migraines are a lifelong disorder that often result in you being bedridden and unable to do even basic daily tasks.

Autism has never been a catch all for a cluster of behaviours. Where have you got that from?

There is no "mild" autism. It all depends on how well they are managing currently.

Anything can change and cause significant issues that seem to "be out of the blue". Usually when environments change and people experience a lack of ability to change things such as moving to university or starting a new job. All wanted things but they can lead to difficulties.

Without proper assessment and diagnosis people could self-diagnose themselves with anything. People can tell you that you are likely autistic, they can share what coping techniques and adjustments would be helpful but without assessing they cannot say you are autistic. That is not to say you become autistic the second you are diagnosed, of course you’ve always been autistic. I’m not trying to argue with you or minimise anything, but we need to acknowledge that there is a diagnostic criteria and it must be assessed against. Whether it needs to be updated and changed to allow for differences between sexes and the ability to mask and mimic and how that can stop diagnosis is a separate issue and I firmly believe it does need overhauling. But it is really important that specialists diagnose and not SENCOs, counsellors or others without the training and knowledge to look at differential diagnosis, co-morbid conditions and other considerations.

If nobody has mentioned it before I recommend reading The Age of Diagnosis by Suzanne O’Sullivan as she tackles a lot of the very issues you are discussing.

OP - what are you actually looking to get out of this? If you don't think your child is autistic, and the school agree (because they won't refer) then why would you bother pursuing an assessment for autism? It's not like it's a fun day out!

If they're not autistic, they won't be diagnosed as autistic on assessment. I do think you seem to be suggesting that children diagnosed who don't meet your own personal criteria of being autistic enough are just badly parented/having tantrums/have parents looking for social treatment. That's not the case and it's really minimizing the impact autism has to view it that way.

If you think your child has autism but are unsure whether to get an assessment, that's an entirely different discussion and it's a perfectly valid discussion to have. But in that case you wouldn't be trying to say that all kids have tantrums (they do) or everyone gets stressed (they do) - obviously if a child is autistic they are demonstrating (to an independent professional) that their behaviour is not what 'all kids' do.

I don't doubt there are people who badly parent and then look for excuses for the outcome, but that's not really got anything to do with an autism diagnosis - it's not like professionals can't tell the difference!