Published on 12, July, 2020
Hi, It has happened a few times now that I have felt quite upset and triggered by the way people talk about autism. I now work as a developmental neurobiologist so inevitably I end up in situations at work where autism is being mentioned or talked about. For example today, someone defined autistic traits as ‘being unable to act in a social manner and not being able to perform in society’. Then there have been numerous occasions where autism is referred to as a ‘developmental disorder’ , people talk about deficits, treatment etc. I know this isn’t meant to be upsetting and I am not expecting people to change how they talk about it but I still find this upsetting. I then wonder - am I really that broken? It also makes me worry what people would think about me if they knew I was autistic- would they then see me as an unsociable person unable to perform in society? I am feeling quite insecure and overwhelmed anyways at the moment with new work, recently moving etc, so I am being overly sensitive and crippled from low confidence in myself anyways. I almost burst into tears today because I felt so inadequate as I was listening to all this talk about how dysfunctional autistic people are. Does anyone have any advice on how to cope with these situations? I feel like there are so many misconceptions about autistic people out there that lots of people must have experienced similar in various settings.
It’s good to know you are surrounded by lovely people, they obviously don’t have bad intentions then. That must reassure you. They are just uneducated about autistic experience.
You are very welcome! Take your time on your autistic discovery journey, after all autistic identification is life changing.
Ann :) said:No they don't know I am autistic. I was close to telling one person at some point (actually just after another talk on autism that really triggered me), but I hesitated and it probably wasn't the right moment. I barely know them yet so I haven't felt comfortable telling them yet. Though it probably would help possibly to show them that being autistic might not be what they think it is. I told one person at my previous work and she was really nice but her reaction was 'oh really, I don't think you can be autistic' (funnily this person had also worked in autism research but not actually with autistic people....). So I am a bit hesitant to tell them at this point
I completely understand why you feel hesitant about disclosing your autistic identity, it’s a very personal thing and you cannot predict people’s responses given that many people still believe in outdated stereotypes. I am sorry you had such an unhelpful and ignorant response when you decided to disclose, it takes a lot of courage to do so. Maybe take some time to get more used to and comfortable with your newly discovered autistic identity.
Below is a video about disclosing your autistic identity for whenever you feel ready to do that. I hope it helps!
Another tip, if you choose to disclose I would suggest you do it when you feel calm and quite confusing just to avoid any unnecessary upset.
https://youtu.be/Sq82fb7NROY
Also they are lovely people. I have rarely been in a group of such nice people. So I know that it is in no way meant to upset anyone. I just think they probably don't know better.
Hi, No they don't know I am autistic. I was close to telling one person at some point (actually just after another talk on autism that really triggered me), but I hesitated and it probably wasn't the right moment. I barely know them yet so I haven't felt comfortable telling them yet. Though it probably would help possibly to show them that being autistic might not be what they think it is. I told one person at my previous work and she was really nice but her reaction was 'oh really, I don't think you can be autistic' (funnily this person had also worked in autism research but not actually with autistic people....). So I am a bit hesitant to tell them at this point. Though knowing me I will probably end up blurting it out at a random and non-ideal moment when my desire to be honest and overshare gets the better of me... Thanks so much for your reply though. I'm still quite recently diagnosed so sometimes it all is very confusing.
And what really strikes me is that these people giving these talks about autism almost certainly have autistic researchers in their team that they work with on a daily basis and respect etc. but they just don't know they are autistic. There just seems to be this huge mismatch in how they talk about autism and the reality.
Hi, thanks for you reply. It sounds like we have different experiences and views on this. I am aware of the definition and diagnostic criteria for autism (I extensively researched this when it was first suggested that I might be autistic). I am not saying that being autistic doesn't bring its challenges with it, but I still find it triggering when it is portrayed as something very detrimental and defective. I know plenty of autistic people who 'perform very well in society' (to reuse today's words). I might not feel like I am doing great at present but I still don't feel like this is an accurate description. Maybe I am just being overly sensitive. I often get the sense though that when you say autistic or autism, people think of the stereotype (barely talking or not talking at all, flapping with hands, probably obsessed with trains and maybe even intellecually disabled)- of course that can be the case, but autistic people are as diverse as neurotypicals. This is what I meant with misconception... that people just think of the 'stereotype'.
Ann :) said: I know this isn’t meant to be upsetting and I am not expecting people to change how they talk about it but I still find this upsetting. I then wonder - am I really that broken?
You are not broken, you are perfectly autistic!
I am sorry you have to be surrounded by others who talk about your identity in a pathologising and inaccurate way. I would be upset too, the way you are feeling is perfectly valid.
Do your colleagues know you are autistic? It’s obviously not your responsibility to educate others about autistic experience but doing so could help change this situation. Would you feel comfortable educating others about autistic experience? I would understand if you don’t.
I understand why the levels are no longer popular, including learning from other members here.
However, here are the levels as they were/are understood.
So, some of these people will fall very firmly within the descriptors in your post:
https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
Ann :) said: I then wonder - am I really that broken?
Short answer: No.Long answer: No, but even if you were it's better to be "broken" than be an ar$ehole.And that 's the problem with NTs they don't always mean to be the ar$ehole but they are so used to being the "normal" ones they don't even realise they are in the wrong about how they talk about people.
NAS describes autism as a developmental disability:
https://www.autism.org.uk/advice-and-guidance/what-is-autism
Social and communication difficulties are part of the diagnosis (see 'Characteristics of Autism'):
https://autismhampshire.org.uk/about-autism/what-is-autism
As it's a spectrum, some people will experience those issues mentioned and others will experience but be able to survive by 'masking' in social situations.
I'm not sure myself that what you say re 'misconceptions' is correct ...
It's one of the issues I have with the use of 'spectrum', and the use of 'high' and 'low' functioning as descriptors becoming less popular.