Being diagnosed as autistic later in life has had its challenges. One of them is how to go about telling people. This maybe seems strange but there are a whole lot of negative responses and misinformed views out there.
I do really want to talk about it. I don’t want to have to hide such a huge part of who I am. I’m glad I finally know I’m autistic, and I’m glad I am autistic. I don’t see it is a bad thing at all, and it’s so fundamental to who I am that I can’t really imagine myself without it, because I wouldn’t be me anymore. It does come with some significant difficulties, but it’s also given me so many things that I’m thankful for, and knowing about it has totally changed my life for the better. But I know that society still, at best, doesn’t really understand and, at worst, has a pretty negative view of autism. So it’s often hard, and sometimes unsafe, to open up about it.
It can be incredibly hard to tell people without worrying that the response will be negative, and it takes up huge emotional bandwidth to deal with that if it comes.
So, if someone trusts you enough to disclose their autism (or any neurodivergence) to you, here are a few handy tips on what probably not to do or say….
- “We’re all a bit autistic” or similarly “Oh, everyone feels like that / experiences that sometimes.” No. No, we aren’t all a bit autistic. This is not helpful and not accurate and is completely dismissive of my experiences. I think this isn’t helped by the generally incorrect views about what ‘the autism spectrum’ is. It isn’t linear. It’s more of a web, with each autistic individual showing potentially different degrees of various traits. But there’s a diagnostic threshold of each of those. The criteria that actually enable an autism diagnosis include thresholds of those various traits that must be present (and have been present throughout the person’s life) for autism to be diagnosed. Yes, you may well find that some of these traits are present in non-autistic (allistic) people, but not to the same degree, not across the board and importantly, not in a life-impacting way. They are human traits at the end of the day, but it’s the extent and impact of these on my daily life which means we are not experiencing them in the same way.
- “Oh, but you’re clearly very high functioning.” Firstly, these functioning labels are outdated and harmful. Don’t use them. If you really want to use a term, try talking about my support needs – but even then, these change day to day for me so it’s not the most helpful way to explain my experience. Secondly, what you actually mean here is that my autism doesn’t affect you very much. This does not take into account my internal experience, how much it affects me, every day, all the time. My masking might make you feel more comfortable around me but it’s caused me mental health issues throughout my life and is exhausting. It also doesn’t really work, there will inevitably be times when I’m too exhausted or overstimulated to mask ‘enough’ and you’ll see a glimpse of how I’m really feeling. This is hard because it’s such a difference to what you usually see of me, and has meant that people have completely turned their backs on me in the past. I live in constant fear of this happening, especially in a work environment.
- “Well, you’ve managed to do everything up until now, so nothing needs to change.” Yes, I have. On the outside I’ve managed to muddle through, but it’s been hell. You don’t see the additional effort I put into just trying to look and act neurotypical. All the time. I have pushed through painful and exhausting experiences because I didn’t know there was another option. I didn’t know why I was struggling and I just thought I wasn’t trying hard enough, or that there was something wrong with me. I was somehow failing at being a human. Now I understand my brain better and the negative impact that masking was having on my mental health, you’ll understand me when I say I really don’t want to carry on that way. So yes, I possibly can force myself to do things still, but maybe I shouldn’t have to – not at the expense of my mental and often physical health. If there are small accommodations I can use that help to even the playing field for me, why on earth wouldn’t I use them? (although learning what accommodations would actually help me, how to actually ask for these, and advocate for myself is another thing all together and I’m still working on that one!)
- “You don’t look autistic” That’s probably because I’m not a five-year-old boy who can tell you everything about trains, right? There are some incredibly narrow stereotypical views of what an autistic person looks like out there, unhelpfully perpetuated in the media. Autism doesn’t have a ‘look’, a gender, a race…we are all different and complex and a lot of our experience of autism is internal rather than external. These stereotypical views of what autism ‘looks like’ are part of the reason I didn’t know I was autistic, and that no health or education professional ever even considered it…also, I mask heavily, all the time, so there’s a reason I don’t ‘look’ the way you expect me to, because I’ve had feedback, implicit and explicit, my whole life that certain things I’d naturally do are just ‘not ok’.
- “I’m so sorry to hear that” You don’t need to be sorry for me, this isn’t something I’m sad about. Maybe you can be sad, like I am, that it took decades of my life to find out the answer. Maybe you can be sad that the world isn’t really set up for neurodivergent people and there are some things I’ll always find a bit harder. Maybe you can be sad because I got incorrectly diagnosed with many other conditions throughout my life which made me constantly question and doubt myself. But don’t be sad that I found out I’m autistic. Be happy that I know myself a whole lot better now and I finally have an answer for things that confused me for so long.
- “Can you tell me all about it?” It shouldn’t be on the person in a minority group to educate you. I’m not saying that I’m not happy to talk about my experiences. I am. Especially if your questions are coming from a place of genuinely wanting to understand more and widen your knowledge in this space. But please don’t put all of the burden of education on me. Go and find out for yourself. Read up on it, listen to neurodivergent voices online – there’s a wealth of information out there that doesn’t involve me over-sharing and using up my emotional and cognitive capacity explaining myself over and over. Also, I can’t speak on behalf of every autistic person, so go and find out about the huge range of us out there, with diverse experiences and views. There are plenty of people actively sharing their stories and there is so much you can learn from them.
So now we know what not to say, but how can we do better?
Here are a few things that I’d love to hear instead….
- “Thank you for sharing that with me. I’m glad you felt safe to talk about it with me.” Accept that it’s quite hard for me to talk about with new people because I don’t know what response I’ll get or if it will change the way they see me. If I’m telling you, it means I trust you, so please be kind.
- “How do you feel about it?” Listen to me and believe me when I tell you about my experiences, and don’t press me to share information I’m not comfortable with.
- “That’s something I don’t know much about, but I’d love to know more.”… and take the initiative to learn more about it for yourself.
- “Is there anything that I can do to support you?” Ask me what I need and what impact it has on things that are relevant to our relationship and again, believe what I tell you.
- Or if all else fails… “…….” because you know the old saying, if you don’t have anything good to say…. 😊