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

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.

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.

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.

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.

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.

So I was diagnosed in my 30s, and DD as a teen. I think a lot probably depends on the individual, whether the autism is combined with intellectual disability, and also the person themselves.

Everyone I know who went through the diagnostic process and was diagnosed had a period of time where they struggled to adjust to the 'label'. For different reasons of course, because we're all different.

For example, whilst I had known I was autistic, I found it very hard to actually see in black and white that I was as socially awkward as I had worries, amd I felt like there was a stigma around it - it took a while for me to be comfortable mentioning it, even when completely relevant to the topic of conversation.

For DD, whilst she had no issue with the concept of being autistic, for a period of time it became a big part of her identity and she used it as an excuse to retreat into herself (or in her words she spent a couple of terms 'tweaking out'). That impacted her both academically and socially last year, and it was internal not external - she had nothing but support from her friends. She also feels no social pressure to conform!

I don't regret either diagnosis - I just wish I'd done DD's about two years earlier (it's closer to GCSEs than I would want in hindsight) and that I had also been diagnosed whilst I was young (destructive coping mechanisms are very hard to unlearn). We didn't get anything special, or any special support with either diagnosis, but we do know ourselves better.

I'm sure there are people who regret the diagnosis long term, but I associate with a lot of adults with 'mild' autism and I've yet to meet one. I know plenty that have chosen not to pursue a diagnosis because they don't think it will help, but obviously that is self selecting - they will never know if it would have done. Of course my sample group is self selecting - I suspect if you regretted your diagnosis you'd probably not admit to being autistic to others!

Is there not a circular logic in the argument that 'A diagnosis has helped me and my child feel better about themselves/gave them access to support/a different job/no fines for non-school-attendance/a framework to understand them; therefore it must be true"? I have heard the same thing said of trans teenagers who are 'Only happy when they've accepted themselves' as a member of the opposite sex. I don't accept that. It's difficult to make this point without people intimating that I'm saying it about all kids with ASD - I'm not. I'm simply saying that the argument 'I like it, therefore it must be true' doesn't stand in any other context.

I found this paragraph really hard to understand where you're coming from.

Autism diagnoses aren't given out because they feel nice, they're given out because the person in question meets the diagnostic criteria.

If someone meets the diagnostic criteria, then a diagnosis can be made, however with autism they also (should) rule out other possible causes such as trauma and early infantile illnesses that can affect development, other conditions such as FAS etc.

Being diagnosed doesn't fill you with euphoria, or alleviate dysphoria. I am happy now I understand myself better, and feel better able to advocate for my needs, but I don't feel elated to call myself autistic, nor am I actually neurotypical and identifying as something else.

Lots of things make people 'stressed' - masking ASD might be one, but there are obviously other non-ASD related factors too. My point still remains that if there is something that is triggering someone, why would it make that much difference if it happens to be under a cluster descriptor of 'ASD'? Nobody has really answered that for me.

Masking is a survival mechanism. It's routed in trauma. For me, it's supressing the fight/flight reflex when I am overstimulated, in situations where I have a clear social disadvantage due to the way my brain works, and pretending everything is OK. Like the Monty Python 'tis but a scratch when it feels like my arms have been ripped off, or there's a noise I can't escape from that makes me want to put kebab skewers in my ears so I never have to hear anything ever again, or ultimately end my life because every single day there is something out there beyond my control that makes me feel so uncomfortable, in pain, and overstimulated. It's like having the worst plantar fasciitis of your life, hobbling along, and people telling you it's not that bad, everybodys feet hurt when they've been walking, you've only another 50 miles to walk before you can sit down and you're not allowed to make a wimper because you'll get piled on, bullied and called names, you'll lose your status at work, people will think you're incapable. It's scripting your phonecalls ahead of time because your brain can't process language in the same way as a neurotypical person. It's feeling every seam in your clothes, like you've got fiberglass lodged in your skin, but you're in a business meeting and have another 8 hours before your shift is done so you have to act like it isn't there. Sure, everybody gets stressed. You and I might get stressed that our unreasonable micromanaging boss has given us another project with a deadline of 2 days while we're managing the workload of a coworker who's on annual leave at a critical time at the company, but the difference is, the lights are piercing my eyes, I want to tear my clothes off, I am processing everything, everywhere, all at once, I can smell John 4 desks away and it feels like my stomach is going to either burst out of my mouth or my bum and holding it in is making me dizzy, it's 23 degrees which is 1 degree higher than I can cope with and I feel like my body is cooking me from the inside out, I have poor interoception so I haven't noticed that I haven't actually had a drink of water since 9pm last night, people keep talking over each other and it's the equivalent of "my lovers got no money he's got his trombolese", and everytime I say what they just keep saying "trombolese!" at me like I'm just not listening well enough.

If I know I'm autistic though, I can say, hey boss, I'm autistic, I need to set reminders on my phone to remind me I haven't had a drink, sometimes I need things in writing if it's important, and I will be wearing linen trousers from now on because I can't cope in polyester in summer.

It stops people placing the blame on individuals for things outside of their control, and means we don't have to suffer or struggle because we can not do things the same way other people can do them, ultimately stopping people like me feeling like they're simply complete failures who can't try hard enough, and stopping it from feeling like there's just no purpose to life at all.

There's stress and then there's the cumulative effects of overstimulation and being chronically misunderstood and misrepresented by your peers and both of those things are different to everyday stressors of life that everybody has to face.

Yes it helped me understand her. School also referred us to an excellent parents course run by specialists.

The easy answer to that is to have lots of postive role models to share. My children know the huge benefits of ND brains and all about the scientists, engineers, inventors, musicians, writers... etc etc that have shaped our world. Not at all downplaying the difficulties too, but children absolutely should be brought up to know that people are people and a diagnosis (or not) doesn't dictate outcomes.

My point still remains that if there is something that is triggering someone, why would it make that much difference if it happens to be under a cluster descriptor of 'ASD'? Nobody has really answered that for me.

There are many reasons why it’s helpful to look at the why, rather than only focusing on the what.

I have two dc, one autistic, one neurotypical. As dc they often were triggered by similar stimuli - the autistic dc for reasons related to sensory processing, and the nt dc because they had learned this trigger was a predictable antecedent to a meltdown.

In both cases, a response that was helpful and appropriate to one would not help the other. If I remove the distressing stimulus from the autistic child that will help, because it reduces sensory suffering. But for the nt dc, that could potentially reinforce an anxiety pattern or a phobia.

Another example might be where a difficulty arises in communication- My autistic child sometimes assumes that I know something because he knows something. Or that I can feel the emotion he’s feeling, even though his tone of voice is deadpan. My nt child can very quickly deduce that we’re not on the same page and provide the relevant information succinctly. And I can do the same for her, but my ds lacks that instinctive insight, and it’s a bit of a dance through a minefield to find the missing info and avoid him making wrong inferences about my motives for asking. Without an uunderstanding of autism, I’d be applying assumptions about his thought process and jumping to conclusions.

Diagnosis does make a difference to what is triggering. Noise triggers my Mum but she isn't autisitc. It's because she has mild hearing loss and certain types of sound are problematic brcause they are out of balance (she only found out she had hearing loss because of this and hearing aids have helped). Similarly you could have sound sensitivity due to migraines or I'm sure all manner of other things I don't know about. How you treat those things are very different.

Similarly eating issues. Food could be a trigger for a child due to sensory issues or interoception issues due to autism. Or there could be physical health issues or allergies or anorexia or ocd etc.

How you would treat a shy child who didn't talk much is very different from how you'd treat a child with selective mutism or one who struggled to talk due to physical issues like tongue tie.

The danger with no diagnosis is that other issues can be assumed to be autism when they aren't.

I'm 50/50 on it. Our son is 3 and was diagnosed at 2.5, which where we live entitled us to free services, and I'm kind of convinced the psychologist did this to get us the services. Our son has changed substantially since the diagnosis was given, to that end we want to get him re-evaluated by another professional. He is definitely high functioning and gifted, we don't debate that. The pros of the diagnosis are that we get free speech and OT which have been hugely helpful in helping his delays.The negatives are that we are now stressed out of our minds wondering if he can go to mainstream school in a year or two, we see behavioural things that we otherwise would not have noticed, then have to remind ourselves that our neurotypical DD did similar or the same things, and it is easy to attribute toddler behaviours to ASD just because the diagnosis is there. My DH is undoubtably on the spectrum, very high functioning, and really had to push himself in life to get to the social piece in place to allow him to function as a "normal person", but he got there, and is very successful in his field, and is a great dad and husband. There are a lot of people now with ASD diagnosis who aren't working, who aren't able to, and he is convinced that if we give/tell our DS that he has a diagnosis and let him lean into it as a crutch that he will do worse in life than if we don't, or wait until later. We don't really know how things will play out, but we are fully on board with early intervention to help with his socialisation, speech and rigidity on certain items. We would done the early intervention regardless of his diagnosis, but likely would have paid privately. I see a lot of parents on high functioning ASD groups, whose high functioning children are being put in ASD specific schools and wonder if it does more harm than good, but some go to mainstream school and can't cope. I wish there was an easy answer. I do think that people regardless of diagnosis should be pushed somewhat. No one gets anywhere in life or grows by being entirely comfortable. Urgh so many feelings on this one.

What are you talking about? There is no mild autism. In order to get a diagnosis it needs to have significant impact on life.

Nobody by is going to get a diagnosis with “some tantrums in the family and masking at school” there is a lot more to it than that.

But you know that don’t you.

Same old anti autism goady thread.

'Labelled' 😒

Yabvu

And I present very well initially and its not immediately clear that I am autistic. I still couldn't cope in society the way others could and had several breakdowns, thinking that I was stupid and a loser

What was really happening was I couldn't understand social cues, struggled with exhaustion from trying so hard to socialise with my peers. Among other dangerous things.

A diagnosis, even though in my 30s changes nothing, means that I understand how vulnerable I am to abuse, bullying and generally being 'messed with'.

Someone who seems to cope well with societal pressures, can benefit from understanding that they are going to find it harder to understand how the world works.

A lot of people with "mild autism" are just masking and the stress of it will come out in the end.

I have to say you strike me as being autistic by the way. Maybe the "mild/high functioning/level 1" version, if you will. Just something in the way you present your posts or perhaps it's in the way I read/perceive them being autistic myself.

It won't be too far fetched if you have a dc who also is.

Is this for your child or a niece or nephew or stepchild?

Coming back to this thread, to add another point. I found that after ds was diagnosed, it was much harder to enjoy him, the way I had before when he did something cute, adorable or quirky. I found myself looking at everything as evidence of a disorder. And initially I was focused so much on helping him that I was looking at after school activities to address deficits rather than things he might enjoy or was already good at.

I think I was a better parent to him when I was intuitively responding to who he was. It took quite a while to get out from under the barrage of other voices and reconnect with him and with myself.

But then I have to balance that against what happened later, when he started to really struggle. Having a diagnosis in place, meant we were hitting the ground running. (I’ve just seen your update op as I’m writing this, and I’m struck by how powerful the word “autism” has been in cutting through the problem of masking. School don’t see what’s going on but because of the diagnosis they believe me when I describe the restraint collapse, and they don’t reflexively blame me for it. Yes it is circular reasoning, but it helps mitigate the enormous harm that school can cause)

If you have money, just support privately. Noone needs to know your labels

You're taking a bit of a bashing OP, particularly around the use of language, and while I understand why others have reacted emotively I would like to highlight that "clunky" language is not equivocal to being rude. We don't grade autism in levels in the UK, and we no longer use high/low functioning, and in the absence of these it is difficult to articulate the range for want of a better word of the impact/level of impairment being caused. Having worked in specialist residential schools for children with ASD who need phenomenal amounts of support and will do indefinitely, and simultaneously having my own child with ASD whom we hope will grow up and live independently, clearly the impact on their lives is different and it's disingenuous to pretend otherwise, but there is no agreed way of articulating that.

Gently, OP, it's important to understand that those whom you/society consider as having "mild" autism (previously likely called high functioning) are actually better thought of as "high masking", in that the experience for them is no less debilitating, they just don't express it in ways which are inconvenient/disruptive to society, and so therefore are considered as "less autistic", not because their experience is any less, they are just having less impact on others so it's easier to ignore them, to put it bluntly. It's why "mild" feels dismissive and emotive to a lot of people who would fall into that category because it can undermine what they are experiencing.

To answer your initial question. We closed to get DS diagnosed, with support from his nursery. He got his diagnosis at 3, which is pretty young by NHS standards, and was largely fueled by a speech delay - the delay had actually improved significantly by the time of his assessment, but it meant we had the appointment and actually there were enough other behaviours to warrant the diagnosis once we were there, but to most people from a distance, there's not much to see unless you actually stop and observe him. It's become more obvious as he gets older as it gets harder for people to say "everyone his age does that" but many would consider him to be "mild" as we know his triggers and can parent and manage him accordingly and avoid situations we know may be too much for him, so he's not melting down regularly in public places. He also can mask quite well so won't necessarily lose it there and then but it will be the start of a cascade until the bomb goes off later in the day, because it's still having a huge impact, he just doesn't necessarily display it immediately.

I have found his diagnosis useful. Like you say, he needs to function in the world diagnosis or not so he needs to learn coping strategies etc and I agree 100%. Except you don't teach a child to swim by throwing them in the deep end and letting them fight it out, you teach them the skills they need to stay afloat, and this is exactly the same. There are loads of areas that other, NT children may already be able to demonstrate, but we need some more practice. But the only way to get access to the baby pool to do the practice before we throw him in the deep end is if the lifeguards agree. And as much as we would all love the lifeguards to say "of course, it doesn't matter why he's not ready for the big pool yet, stay here as long as you need" what you usually get is "well everyone else can do it, why didn't you visit the baby pool when everyone else did?" Except we did visit the baby pool and we're there, but when they were splashing about we were working on just getting in to begin with, and so now we're only just where the others were a year ago. And having that diagnosis helps explain to the lifeguard that he's not just being lazy or naughty, and it's not that we haven't tried, but we just need some extra time to practice before we move on to the next stage. DS struggles immensely with crowded places and queues, and his diagnosis allows us to get passes that means we can queue elsewhere/skip queues or visit places when they are quieter. We hope we won't have to necessarily do that forever, but what it does do is allow us to meet him where he's at. He'll never get more comfortable with crowds if he doesn't get exposed to them, but if he's already had to queue for an hour to get into the crowd then he's not going to be able to tolerate it, and frankly, he's just as much entitled to be in public spaces as anyone else and this is what we need, for now, to get there, even if we never reach a point where he can tolerate queuing.

It's the same with nursery/school, there are loads of really small adjustments that make his life easier, and allow him to engage in his learning, but the reality is without a "reason" the education system is likely to label you as "that parent" and your child as "naughty". Not least his own understanding that he's not thick or weird or anything else that a lack of understanding of his own brain may have caused

I do think there's a lot more nuance in older children though, and diagnosis doesn't help everyone, although in my experience I think more feel it helps them than hinders

My view on this would be that 2yrs is a long time. If your child is fine by then you could always withdraw. But if you don't go ahead now you'd have to start the 2yr wait from scratch if things got worse in future.

Both my kids did ok until age 7/8 when social structures and workloads changed hugely and they couldn't cope in the same way. My older child was assessed at age 7 after a 2yr wait. I decided to wait a bit longer for my younger child and it's now a 4 year wait which is awful.

Remember, you experiencing their autism mildly doesn’t mean they experience their autism mildly.
m.youtube.com/watch?v=D8j1fcQiyBU

I wouldn't have paid thousands for it and it hasn't materially impacted DC life having a diagnosis. No particular additional support or help offered ongoing though we did see psychologist and occupational therapist during the process and got help and advice from them. We got diagnosis through NHS and weren't particularly looking for it at the start of the process and even during the process (very thorough and lengthy) I did wonder what the point was for us and if we were just labelling DC for no particular benefit. Overall though it was positive experience and I am glad we have done it - nice to know and also I think when we might have difficulties is with secondary school and at least we will have the diagnosis for any future issues and be able to get support and adjustments quicker and easier (hopefully). It also makes me as a parent feel better - I spent ages reflecting on our parenting, boundaries etc and now I can have more confidence to implement different strategies and to ignore people who have certain opinions on what we should do better. I think it also helps us be more understanding of certain behaviours and to ask for help/support during extra curriculars (sometimes we don't it but sometimes it gives me a way to say can you approach something new with DC in this way)