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.

These threads always descend into this and end up being derailed. I can understand how people could feel the ‘mild’ label is minimising of their difficulties and lived experiences.

However to suggest that parents of higher functioning children wish their children were lower functioning / had a greater level of need, is incredibly tone deaf and also ironic - I’m sure if it was the other way around, posters would be up in arms about it. I don’t think any parent would wish their child was non verbal, or incontinent, or in need of 24/7 care with no hope of ever having any independence. It is in very poor taste to suggest this.

Likewise, the comparison between those with intellectual disabilities vs ASD. It is so ignorant to say that those with significant intellectual disabilities suffer less than someone with ASD. As a group, those with ID have suffered an incredible amount of trans generational trauma and institutional abuse which continues to this day. There is still a massive amount of stigma around those with ID, and they are often overlooked even in terms of research so it is impossible to even know the true amount of psychological distress in this population.

You don’t need to minimise the struggles of marginalised groups in order to try to validate your own, or win an argument on the internet. It’s not a race to the bottom.

I won’t be engaging further as it’s descended into a circus and it’s the same posters arguing and making offensive claims and comparisons.

Oh dragging the trans debate into it now too. 🤔Nobody has left leave of their senses. They’ve explained how autism works, how offensive the term “mild” is and the realities of having a child with autism. See the previous few posts - in detail. You have all you need to know. If it’s not your child it’s not really down to what you think. If it is your child and you’ve been advised to look at diagnosis by professionals I’d listen to their advice .

I haven’t read the whole tbread but my impression is that those of us who actually have an autism diagnosis are telling you there are numerous important reasons to get one. (Interesting thread by the way. Some PPs have made some excellent points)

YABU. I think. For a start, even if everything is ok now it doesn't mean things won't go pear shaped in the future.

DS was ok and coping in school, until he wasn't. At that point the waiting list for assessment was just over two years, and thanks to the work of the ALNCo, he was seen in 1 year and was diagnosed in time to get a place in a specialist autism base.

If things were different and he'd managed to cope until now, we'd be looking at a four year wait for assessment, which as he's 12 would have really serious implications for his education.

I've skipped a few pages - but I know with a fair degree of certainty how the arguments have gone.

If you met me, or saw my CV or whatever - I'd definitely have mild/low support needs/high functioning autism or whatever vocabulary we're using these days. However, what is really interesting is that my diagnostic report actually has my ADOS algorithm scores on (OK this is really interesting to me when I was doing my ADOS training and colleagues and possibly as much interest as watching paint dry if you're neurotypical) and they're surprisingly high. I thought I did well at the whole masking shebang but when you put me into an assessment designed to probe into the areas I try to mask - it shows up massively.

As part of getting cleared to use the ADOS clinically, we have to also video ourselves carrying out the assessment on an individual with a confirmed ASD diagnosis. As the tame autistic in the team (and because no one wants to sit through that damned thing again for fun), I tend to volunteer to be the video stooge for colleagues to get signed off on this (more people cleared to do the assessments = an easier time for us all on the team and I'm all for Team Easier). Colleagues who I've worked with for years have the most interesting reactions when they run the assessment on me and see the holes in my performance that I can mask very well on a daily basis - it's a real mutual eye opener - me in seeing their reactions and them in seeing the areas that someone who works with them as a peer (and pretty well regarded in the team) has deficits in.

I went private for my ADHD and autism diagnoses. Both sets of professionals sent me numerous questionnaires to fill out in advance. Both said that they look through all this paperwork on receipt and if it looks like they are not going to be able to diagnose the person, they cancel the appointment.

There really isn't such a thing as 'mild autism' and 'the spectrum' shouldn't be viewed as a line from neurotypical to autistic, rather someone on the autistic spectrum has a number of symptoms associated with being AS - they are two parallel lines which don't interact. The symptoms can include, hypersensitivity, a lack of 'theory of mind' or empathy/social imagination, hypersensitivity to other peoples emotions, poor coordination, sometimes to an extreme degree resulting in a severe physical disability (often seen as high needs autism), a lack of interoception, mutism, etc. someone could have 4-5 AS symptoms but still be seen as 'mildly autistic' because they don't have any outward symptoms of autism, only internal.
My DH is has AS but didn't find out until.his late 30s. It has made a huge difference to him and his teenage years and 20s would have been so different if he had known. He has gone from thinking he was a bad person and bouncing in and out of depression to an amazing father and husband. He is extraverted and has a great job. He is still autistic and can suffer from autistic burnout if he doesn't get enough downtime and spends too much time masking.
I would be a proponent of diagnosis every time.

I have strategies i use to make sure I don't get overwhelmed.

For example I am renowned for my big family meals - at Christmas I can have 18 people here, but I'm in the kitchen the whole time. But my husband's family thinks I'm warm and generous. I am not - I'm coping in the way I know how.

I have dogs so they give me a great opportunity to holiday in the UK rather than go abroad and get stressed with airports etc. I drive - i feel car sick otherwise.

But if something happens to upset my strategies I get so stressed, I simply can't cope. I drove home on Friday from holiday and it was an awful journey and the whole of Fri and Sat I was shaking, couldn'tcope wuth noise or light...

I have been managing my autism for over 60 years now and I know what I'm doing. Younger people have opportunities for diagnosis which weren't available when I was at school. I had to work it all out for myself. I wish my younger self had had help.

NC for this. I know someone who took their own life because they never sought a diagnosis for their high functioning autism and in the end a lifetime of masking became too much for them. They had a sibling who was diagnosed, on the 'severe' end of the scale, and as their autism was 'mild' the symptoms were not taken seriously by those around them (or even by them I don't think). Had this person received a diagnosis and got help then they would most likely still be here.

That is so sad and surprisingly common, I think - and attitudes on this thread about "mild" autism being no big deal don't help.

Diagnosis for my "mildly" affected daughter gave her "permission" to relax. It's taken a year for her to really relax into herself and she seems way less mildly affected now she is now longer desperately trying to squish herself in the box of "normal". She was going to mainstream school but it was the realisation in Yr 8/ 9 that she wasn't coping that pushed us into getting her a diagnosis. Since her diagnosis we fought with school, lost, took her out to home educate and she is suddenly a confident and more relaxed teenager. She is learning to advocate for herself and is now speaking at home and sometimes even smiling and I am pretty sure she laughed earlier... it is wonderful and strange to see her happy!

Also, please always remember that a child with autism or AS symptoms without a diagnosis is going to become an adult and going to have to manage in the world with or without a diagnosis. A better understanding of themselves can only be beneficial for this because they're not.going to have an adult advocating and putting in accomodations for them forever.

Well I agree that's it's really offensive when low support needs autistic adults claim their challenges are the same or "worse" than those of high needs children. I have two very severely disabled autistic children myself and it's very upsetting.

I also think that terms like "complex needs" and "high support needs" are becoming meaningless in some ways as nearly every parent of an autistic child I've met (a fair few professionally and personally) says their child has complex needs even if they're academically above average, in mainstream etc while my children have always been in special schools and one is non-verbal.

That said, I still think that autistic people who would have once got an Aspergers diagnosis usually benefit from a diagnosis and have considerable challenges which require lots of understanding and support. Mainstream schooling is pretty much hell on Earth for lots of autistic children and cognitively able autistic adults have something like a 16x increased risk of dying by suicide.

I agree. I really am sympathetic to the difficulties faced by low support needs autistic people and in some aspects my family with incontinent, non-verbal children have had a smoother ride (simple diagnosis, EHCPs very early, very few professionals questioning our parenting). I find it horrifying how high the suicide risk is for cognitively able autistic adults. HOWEVER, the reality is, my children will almost certainly die sooner, possibly before their 40s (backed up statistically) and I am absolutely terrified someone will hurt them and they'll never be able to tell me. They'll be subject to more restrictions in their lives and are high risk for basically being manhandled / restrained. They will likely live on benefits and at the mercy of other people their entire lives.

The high and low support needs situations aren't really comparable.

I am still glad the OP said she'd changed her mind. Diagnosis is important for all autistic people who think they could benefit.

My dd was academically above average and in mainstream. She now has an EHCP, wasn’t able to manage supported living, spent a lot of her teens in hospital and has been described as having complex/ high support needs.

We’ve struggled for years to get an ND diagnosis for our DD1 (now 16). We had a private assessment via adoption services 2 years ago. She was described as ‘complex’ because of adoption issues and possible FASD.

She’s also been diagnosed with epilepsy this year after having a ‘tonic clonic’ seizure in the car on Christmas Day last year, and some absence seizures since then.

She’s had an MRI and an EEG, which didn’t reveal evidence of FASD.

I asked for ‘right to choose’ in the autumn of 2023 and we’ve now filled in the pre assessment questionnaires and are waiting for an appointment date. This is to hopefully finally get an official diagnosis.

I suppose you could argue that it doesn’t matter, as she has an EHCP now and receives PIP, but she is badly impaired by her disabilities and couldn’t cope with mainstream school. She didn’t pass any GCSEs, despite her teachers describing her as capable intellectually, but she found it overwhelming and she was bullied badly.

She’ll be starting a specialist college next week, which we’re hopeful will be able to meet her needs.

Yes, also understand this. One of my DC is (finally) verbal and toilet trained. Many times in the past he has had more severe and complex challenges than sibling with severe Learning Disability. However, I have heard this applied to almost every single autistic child I know well enough to speak to parents frequently. In this situation what does 'complex' actually mean?

But you don’t know the ins and outs of other people’s children. I’m sure you’d have written my daughter off as mild/low need if you’d met her at primary school.

I mean, if I'm working with them professionally I often know quite a lot, gor example if I have read all the appendices of an EHCP. I don't know about your child at all, so won't speak to that. As a parent, it is sort of stressful having an academically able autistic child, fully verbal, who attends mainstream clubs, has a best friend, has used the toilet since 2, who has only slight trouble with nuances of languages be called 'high, complex needs', next to my non-verbal, incontinent, faeces smearing, physically violent, no awareness of danger child who has eaten a battery in his special school before.

Like most people, I don't like functioning labels or mild-severe when applied to autism. However, now the definitions of 'complex needs' and 'high/low support needs' is also changing / expanded. It's not as simple as a PP suggested as saying all autistic people who present as what used to be called 'low functioning' actually have a co-occuring learning disability - it's not true! People with this presentation of autism are really being erased from the community.

I don't have the answers, but I am actually quite worried about the group of autistic people who are minimally verbal, substantial social care needs etc.

The question was whether it is always better to get a diagnosis.

The assumption some seem to have is an official diagnosis is always more helpful rather than limiting.

That is not necessarily the case. As with many things, it can sometimes tip the other way. It's important to think about that.

This is true of many conditions, btw. If the treatment or management of said condition doesn't require an official diagnosis to access - which is very common - it is often better that said condition is never written down in your medical file. Because at that point it can have serious financial and other implications, for example accessing health or life insurance.

Jesus people on this thread are hyper-focused.

The point is that someone like the OP is not talking about generalisations, they are talking about a specific child.

FFS do people not understand the differernce? You don't treat specific people as statistics, you treat them as the individuals they are. In order to do so you have to weigh the potential benefits and downsides for the specific individual.

I have what you would probably call 'mild' autism. Everything was fine until I hit about 15 then I stopped being able to cope and had no idea why, neither did anyone else so I was labelled as attention seeking and was told I was making up my mental health issues. That resulted in years of self harm and suicide attempts I was obviously just defective and 'bad'.

If I'd known that it was autism and not understanding the world was perfectly normal it would have saved me decades of self loathing. Maybe I could have got a decent education and job before my 40s!

Australia and New Zealand do not generally accept autistic migrants, they will even deport whole families if a child gets diagnosed. Not sure about any others.

I know what the question was.

But my argument is that you shouldn't refuse to get someone diagnosed just in case it might cause them issues in the future - especially when that lack of diagnosis means they miss out on support in the present.

I wasn't diagnosed with autism until I was 36 but my future was still impacted because of repeated misdiagnoses, burnouts and overload. If I had a diagnosis 30 years ago, I wouldn't have spend several decades beating myself up over my inability to function, for starters.

DS3 is academically able but is described by numerous professionals as having complex needs. For him, complex means things like:
Being academically very able (IQ well over 70 therefore, using the original definition, is high functioning - although wouldn’t have been diagnosed with Asperger Syndrome because he had a speech delay at 3) but having very significant support needs.
His needs are such that it is inappropriate for provision to be made in a school/college. He has an EHCP and a comprehensive EOTIS package with 2:1 at all times.
It means he has a large number of co-morbidities.
It means he can’t be left alone at home.
It means he has a wash and dry toilet at home because while he is continent, toileting is difficult.
It means he needs help with things like showering, brushing hair, etc. despite being a teen.
He receives social care support and will need support for life.

I don’t think ‘complex needs’ is limited to only being used in relation to autism either. I also have DS1 who has ‘complex needs’ but isn’t autistic. He has a complex mix of physical, psychological, developmental and medical needs.
For him it means:
Being academically able in some areas but having very significant support needs - even higher than DS3.
It means he has continuing care funding with 2:1 care.
It also means his needs are such that it is inappropriate for provision to be made in a school/college. He has an EHCP and has a comprehensive EOTIS package with 2:1 at all times.
It means he is not toilet trained.
It means he needs help with all activities of daily living.
It means he can’t be left alone at all.

Obviously there is so much more to both of their needs but they are a few examples.