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

It's not that simple; it really depends on the individual. I know a few people close to me who were diagnosed with autism as adults, even though they had no previous mental health diagnoses. Of course that doesn't mean they didn't find things difficult, just that they didn't have any record of mental health or other issues. As autism exists on a very wide spectrum, it's not wrong to consider whether, in a specific case, it might be better to delay a diagnosis for now in order to leave more options open for the future. Everyone's circumstances are different, and it's a shame that some people don't seem to get that someone considering a choice different from their own isn't a criticism of them or their family.

The fact is if you’re struggling you’re going to need support which will be on your records regardless of whether you have a diagnosis. If anything a diagnosis will lessen the amount of support you’d need and give you a better chance of emigrating as it would be better tailored. If my daughter had had her diagnosis earlier she would have had better tailored treatment as opposed to CPTSD on top from the wrong treatment.

That's why I added the word, generally.

I think it depends on how well the child is managing without a diagnosis. If the diagnosis would help them get much needed support them it is likely to be worth it, but if they are managing without one it could potentially be better to leave it for now and let them decide as an adult whether they want to pursue a diagnosis or not, bearing in mind what pp said about diagnosis making emigration and things like health insurance very difficult. The way things are going in this country many young people are going to want to emigrate, and leaving that option open to them if possible might be a good idea. And if they wish they can always seek a diagnosis as an adult as many people do.

If my mother had known I was autistic, she wouldn't have battled with me on food.

I grew up in 1960s west of Scotland and my mum tried to feed me the local diet, which was pretty bland and soft. And I just couldn't eat it.

White fish, not even a lemon to go with it. Mashed potato, mince. Boiled eggs. Milk.

She would insist I clear my plate and apparently I would sit for about three hours, trying to swallow the food.

She would not deviate. Nothing was to go in the bin.

Meal times were a complete nightmare. She simply didn't understand.

Anyway this is an example of how it is so much easier to spot autism in children. You have so much more control over your life as an adult. You can eat what you like. Imagine if you were still being treated like that though. It would be so frustrating and those "mild" autistic traits would be anything but.

Australia do take autistic migrants.

You may be able to emigrate to Australia with autism, but it is difficult because Australia's immigration policy can reject visa applications if the person's disability is considered likely to incur significant costs for the Australian healthcare system. This policy has faced criticism as discriminatory and outdated, and while the process for applying for a visa can be arduous, there are avenues for waivers or appeals, and the government is reviewing the health requirements.

How the Policy Works
Cost Threshold:
Australia's health requirements for migration can lead to visa rejection if the estimated cost of care for a person's disability exceeds a certain amount ($86,000 AUD or £45,000) within 10 years.

A Burden on Services:
This policy aims to prevent individuals from becoming a financial burden on public health and social services, though it's been called discriminatory and out of sync with modern attitudes toward disability.

Limited Exemptions:
Some visas may allow for waivers, and there is an appeals process, but these can be lengthy and expensive.

Canada is a lot better. Bizarrely you can to the USA
as it is a protected disability(who knows for how much longer and not sure I’d be rushing to emigrate there atm anyway even if I was NT), but you must be able to show that you will not become a public charge (i.e., likely to rely on government assistance) and that your disability does not pose a risk to public safety or health.

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.

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.

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 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!

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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!

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

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.

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.