Do you think it is wrong for someone to say they are autistic when they aren't diagnosed?

Self realisation should be followed by extensive research about the topic. If someone says 'I know that im autistic' just after filling an AQ50 (whatever score they hit) then I would encourage the person to research more before saying, that they are autistic. The tests questions detect some issues, but not so specifically. For example not enjoying social settings can be due to trauma, anxiety or depression. The final answer comes from a professional. But not everyone has access to assessments, not everyone is in a situation that they should be assessed. In addition it's often that one professional says they would give the person a positive diagnosis,  other one says they would not diagnose. Same patient. And there is often imposter syndrom. I don't think it's bad to say, that you think/suspect or are undiagnosed autistic. People are in various situations. I only don't like it, when tiktokers make a fashion out of it to get attention,  get their way, push some narrative,  or I don't know what else. It harms those, who struggle. And I don't think that not hitting the threshold should not be automatically a denial in supporting an individual in need. 

In around 2012 I was thinking why I have the difficulties that I had. I looked at my behaviour and ended searching highly sensitive person and found a test. From there it seemed the search on this lead to autism. I have been treated for an eating disorder earlier and some autistic symptoms noted. I went into hospital in 2015 and the consultant as they were a teaching hospital and did autism to they tested me with ADOS and spoke to my dad. They then started treating as having autistic traits but said I still to get diagnosed. This could have been done in 2016 but I never went to testing stage. They spoke to my mum and asked her if I had been ill in childhood and she said no and it went no further. They still treated as having autistic traits and I did another test by a consultant in 2017 and scored highly.

In hospital in 2021 under observation a nurse wrote in my discharge summary I should be tested. I didn't want to leave it like that so when discharged spoke to my GP and set up the referral. I got my notes and found I was actually admitted to hospital at 2 months and was a frequent visitor to an infant. This was what was missing for me before. I submitted the evidence with others and went for the test and was diagnosed by the NHS  coming up to four years ago. 

I would have left just being treated as traits and seeing myself as this if not for what the nurse wrote on my discharge summary. I think it is fine if others want to live by having traits. How has it helped. I was in hospital in 2023 and it helped get my own room because of the diagnosis. It helped me to but it got quite difficult when I started to think over stuff that never applied. I was ok and then my report in more detail later and surprised I had more level 2 than I thought as I never read the report properly at first. I started thinking does that mean I will struggle to live alone. This is not so and I am comfortable with the diagnosis now.

It was my sister, who was a primary school teacher at the time, who suggested that I might be autistic, as she'd done training as part of her job to help kids with special needs (and their parents) and recognised some of the signs in me. This was in 2016/17 but my dad's terminal illness meant that I didn't start the journey to an assessment and diagnosis until 2019, then of course Covid-19 threw everything up in the air and it was 2022 when I finally got formally diagnosed. I considered myself autistic already, but there was that niggling thought in the back of my mind that I'd not be believed by anyone outside of my family and close friends. While the validation of a diagnosis has helped, I still don't talk much publicly about my autism, but I'm hopeful that in time that'll change.

I wasn't going to go through the process until I went through burnout. Although I am still on the long waiting list for the final assessment, my initial one suggested enough evidence to go  on the waiting list. At my request the mental health services arranged a letter to explain which meant that my work treated me under the disability act and I now have some reasonable adjustments in place. 

In relation to NHS at the moment I just mention it and hope this will help.

Anyhow reading this post has been useful I can see mostly people are critical of people on social media making throw away claims akin to tidyness=OCD etc about being nuerodivergent, which reassures me a bit more as it's not what I expected. I am anxious about the future anyhow I think I've tried to not be seen as something "wrong", "stupid", "incompatible" for many years it is hard to not be vigilant about how I'm perceived by others xD so I'm just generally worried about the future and facing more scrutiny and doubt from one direction or the other.. in my own case diagnosis has helped more than not anyhow.

I hope you find self understanding/support that helps through the process anyhow good luck.

In regards self diagnosis, I am late diagnosed myself and highly masked whilst basically living in fight or flight and burnout, always being caught out and this felt like ostracization. I grew up in foster care, previously my mother was schizophrenic and not supported, basically I didn't have people who were concerned when I was young person, I went through school bullied etc but not diagnosed. My adult life has felt like living on the margins not much social life, anxiety, burnout, guilt for being unemployed all the time. Anyhow all this is to say I am triggered by the stigma around self diagnosis, because I had family tell me I'm not autistic, they were pretty ignorant and ablist just not accepting it, and always I lacked confidence and will present things sheepishly and be denied. This led me to not be able to advocate for myself to medical professionals and meant I went years doing CBT and living with no support and lying about what I'm doing to everyone because I couldn't make my life work in anyway at all. I am diagnosed now but it was a traumatic journey doing the assessment and I feel like an imposter still even though I'm not every time this conversation about self diagnosis comes up xD. It's also divisive, and I hate to think of autistic community policing itself by judging who is or not autistic. I have burnout a lot now, I know someone who has chronic pain condition from masking for years, so I think people should be careful judging things. Sometimes I think the way this is talked about a lot at the moment serves the purpose of keeping people from getting support. I do understand parts of the other side, where it's trivialising and where people feel it threatens people with higher needs from being supported. I'm giving my two cents anyhow I am biased the other way but because I had the trauma of years of not being able to advocate or be supported. I guess it could be useful anyhow to have the diagnosis as you say your circumstances are difficult. Reform, not to scaremonger, but they are lying through their teeth about mental health really trivialising it and with blatant dishonesty, so I would say it's not a bad idea to get a diagnosis the process might be validating to how much you actually do struggle and what your needs are, maybe you gone through a lot of that already but the forms and stuff do help bring a lot of that out.

Hi Pietro, please remember our Rule 7: Be respectful in discussions.  People will naturally have differing opinions on this topic that we are all allowed to share, but please avoid using insulting or disrespectful language.

You've got to do what's right for you ultimately not for other people. I hope the GP appointment is useful. 

Misinformation is quite insensitive and disrespectful for me. Though I don't have it, OCD isn't something to poke fun at or "mimic". Burnout is really hard to deal with, but there are related posts on burnout in the community that hopefully help you. 

Thank you for all the responses, I really wasn't expecting so many.

I'm really going through alot at the moment realisation and burnout, was a bad day yesterday and later on after posting this thread i actually phoned my GP and I've got an appointment 21st September to discuss/referral for autism. I know it's a complete U turn on what I posted yesterday but I'm not coping and my life has been very restricted for over half my life and the social aspects all my life.

I do agree with what others have said about people who see it as a trend thing to say that they are autistic, I feel alot of celebrities and social media influences do this. I also have OCD (diagnosed) and I hate too when people say over a little bit of cleaning that they have it.

I suppose another distinction is who you are saying it to and why. At the moment I am self diagnosed, I say that in here as a hopefully safe environment. Whether my official diagnosis is yes or no I have no intention of going around announcing it to anybody. I don't know if it is fashionable now to say you are neurodivergent but I know that personally, although the struggles throughout life were so exhausting and crushing in one way I am glad that it was not recognised until now when there is much greater understanding and acceptance. But there is still a lot of stigma attached to ADHD and Autism especially with my generation so I can't see the advantage of claiming you are neurodivergent (whether you have an official diagnosis or not) if you are not unless you have some spurious motive.

I'm not really following, but in terms of attending groups of communities (assuming you mean here?) it's a fairly common to be signposted to here in terms of learning, research and support.

Disclaimer I am not a medical or legal professional

Its a personal choice to have an assessment or not, very few people talk about not being diagnosed after having an assessment. This is because they move on. They process that as part of their identity. Probably not helpful who want that tag. But it seems strange to be attending groups with communities of people diagnosed with a condition you have not been assessed for. I waited over 4 years with multiple ups and downs, change of service - so I am well aware of what it feels like. Until you have the diagnosis you can't move on, but you’ve lived your life up until that point, you are still you. Its the not wanting clinical assessment, but determining yourself is not a professional diagnosis.

You could be right, but its hardly plain English, just a load of officialeese that means what they want it to, when they want it too.

Yes self diagnosis requires research and unless you fit so many of the struggles it seems odd to self diagnosis 

I still wonder how much of my struggles are autism and how much is ADHD as I seem to fit the criteria for audhd despite. At first I refused to believe ADHD might be a possibility but the more I searched is x an autistic trait thr more. I got lead to audhd 

All I can say is that it was wrong for me, good grief! 

I do have to add, however, that in a meeting at work they kept referring to it as "potential diagnosis" which really rankled me.

This is still not peer reviewed www.medrxiv.org/.../2026.08.03.26359559v1.full but they say in "interpretation"

> Interpretation Adults who suspect they are autistic or have ADHD show polygenic profiles closely resembling those of individuals diagnosed with the condition in late childhood, adolescence, or adulthood. Suspected and diagnosed groups are similar in most PGS but differ in co-occurring mental health conditions, suggesting that factors beyond underlying polygenic profiles shape who seeks and receives a diagnosis. These findings support prioritising diagnostic access and neurodevelopmentally-informed support for adults who suspect they may be neurodivergent.

I think this means that they are usually right about their hunch. But I am adding another layer of interpretation, and could be wrong.

I only disagree with people that know too little, or for which there were never problems related to Autism self-diagnosing. For the later case dismisses the disability or impairment part.

(Those are valid for most disabling conditions, or even disease classification in my view, not just autism.)

I think it's wrong to discredit self diagnosis for individuals such as my self who have suffered meltdowns their whole life and who have always shown traits and felt out of place because of it 

Before knowing I could be autistic people always put my work life struggles etc down to anxiety being the cause not the effect 

That frustration a lot of people my self included feel from finding it difficult to keep up with executive functions realising there is an explaining factor to this is such a relief 

But it can also be a blow when you realise these struggles will never fully go away but it does allow your to adapt 

I suspect that, like myself, the majority of late diagnosed adults came to the conclusion that they were autistic, or had a fairly accurate feeling that they were autistic, before seeking a diagnosis. It seems reasonable for self-diagnosed autistic people to say that they are convinced that they are autistic, but a bald statement with no qualification of, "I am autistic," feels too assertive. Autism is a condition with diagnostic criteria and I think that certainty demands a clinical diagnosis. I have nothing against people saying that they are autistic but undiagnosed, as long as they make that distinction.

Stuart333 said:

I don't think if it as an identity, but an explanation to help me find work arounds so I can still do as much as possible. I can't change other people, but I can change how I see and think about things and find ways to minimise the pressure.

That is a great way to view ASD, and mirrors somewhat how I've approached adjustments in my day-to-day life since my diagnosis.