What to do when your adult friend is late-diagnosed as autistic
After I received my formal diagnosis, I had to navigate the experience of telling my friends and family. It was mostly awful and just added to how traumatic a late-in-life autism diagnosis is.
At the time I didn’t have the words to articulate what was going on and what I needed or wanted from them. I was just learning about it all myself and not only was I having to figure out what exactly autism was, but I also had to figure out how to coach my friends at the same time. It was exhausting.
If your friend has just been diagnosed, or if you’ve been diagnosed yourself and are looking for some tips to send your friends, I hope this helps. ❤
Your first reaction counts
Autistic people have gone through their entire lives feeling like outsiders, and likely being bullied for their autistic traits. So your first response is critically important. Your goal is to be supportive, open and understanding, and to not accidentally show any negative or ableist perceptions you might have about autism.
Don’t say: “You don’t look autistic! I never would have guessed.”
Some autistic people are good at “masking” (camouflaging themselves to pretend to be neurotypical). What you’re actually saying when you say they don’t seem autistic is, “Congrats on severely traumatising yourself by cultivating such a believable mask of neurotypicality!”
If you think they don’t look autistic, it just means you don’t know who is or isn’t autistic, or what autism is. It means you’ve probably been misled by incorrect autistic representations in the media and have a stereotype that is both based in negativity, shame and ableism, and you’re telling your friend that you are ignorant to what autism is.
Did you know that Rainman was based on a real-life person who didn’t even have autism? Did you know that the actors playing Sheldon Cooper on The Big Bang Theory or Shaun Murphy from The Good Doctor aren’t autistic? So while these characters are autistic-coded, they aren’t actually authentically autistic.
Some famous people with autism that might sway your perception of autism:
- Dan Aykroyd (comedian)
- Daryl Hannah (actor)
- Questlove (musician)
- Tim Burton (director)
- Holly Smale (author)
- Dan Harmon (creator of Rick & Morty)
- Clem Bastow (radio broadcaster)
- Abz Love (rapper)
- Hannah Gadsby (comedian)
- Armani Williams (NASCAR driver)
- Courtney Love (musician)
- Sir Anthony Hopkins (actor)
- Ladyhawke (musician)
- John Howard (MMA fighter)
- Wentworth Miller (actor)
Don’t say: “Well, everyone’s a little bit autistic!”
No, not everyone is a “little bit” autistic. Autism Spectrum Disorder is a neurodevelopmental disorder that means that your friend processes information differently, communicates differently, and experiences the world differently. It’s a spectrum that you’re either on, or off.
Statistics from the CDC in 2018 put autism occurrence rates at 1 in 42, with a breakdown of 1 in 116 for women, and 1 in 23 for men. With the amount of people (especially women) being diagnosed later in life I estimate the rates to be closer to 1 in 10–15. It’s far more common that people realise — so, many someone who thinks that “everyone’s a little bit autistic” is probably just unaware that the people they think are “a little bit autistic” probably are autistic.
You might feel that you are being helpful by saying this, but by saying that everyone shares their problems, you are minimising their experience of being disabled. And this is something that can’t be stated clearly enough — autism is not just a quirky personality trait, it will impact your friend’s ability to integrate into the world and they will feel disabled by neurotypical society. They will experience anxiety, sensory issues, communication issues, problems with their joints and digestive system — so while you may also experience social anxiety, you will not actually truly understand their lived experience.
Don’t say: “You’re okay because you’re high functioning.”
Functioning labels are bad. They perpetuate an ableist view that people who are productive within a capitalist society are the ones who are valued and important and those who aren’t productive are not. Also, while an autistic person may be able to shower, shop, go to work or school or socialise, it’s very likely that the day after they will be recovering from “autistic shutdown” which looks a little like chronic fatigue.
The other reason why functioning labels are bad is that Aspergers was previously used as a description for “high-functioning autism”. Hans Aspergers was also a Nazi and used this definition to decide who did or didn’t get sent to the gas chamber. Yuck.
Note: Aspergers was removed from the DSM as a diagnosis in 2013.
Don’t say: “But you seem so intelligent and articulate!”
Some autistic people have learning difficulties, just like some neurotypical people have learning difficulties. And some autistic people are also incredibly intelligent, just like some neurotypical people are too.
A person’s worth, value, or contribution to society is not measured by their IQ alone, or by how good an orator they are. The controversial 1994 book “The Bell Curve: Intelligence and Class Structure in American Life” argued that cognitive ability and social status are tied hand-in-hand and set the scene for the focus on intelligence as the single most important trait a human can have. But this is inherently ableist, and when you say this to an autistic person you are telling them that you now perceive them to “worth less” than they did before, when they “seemed” intelligent.
Don’t say: “I know someone with autism and you’re nothing like them.”
The autism spectrum is not linear (e.g. from a little bit autistic to a lot autistic). It’s more like this wheel graph below. Every autistic person is different, just like every neurotypical person is different. And a 40-year-old woman is, of course, going to be nothing like your 4-year-old nephew — autism or not.
Don’t say: “You’re so brave.”
Yes, absolutely your friend is probably going to be brave for talking about this with you. Especially if you think they are brave. You most often hear phrases like this when someone is talking about a large person wearing a bathing suit. In that context, they are not actually saying that the person wearing the bathing suit (the autist) is doing anything special, but you are essentially telling that person that society’s expectation of them is one of disgust and they are brave for facing that disgust head on. So do not tell them they are brave, because you’re actually telling them that society isn’t going to like them for being autistic.
Don’t say: “I feel so sad for you.”
Receiving an autism diagnosis is not a death sentence. It is not something they can change or recover from. It is fundamental to who they are as a person. Telling them you feel sad for them makes it clear to them that you have a negative view of autism and you now pity them.
Things to say instead:
- “Can you explain what autism is to me?”
- “Are you okay?”
- “How can I be a good friend to you right now?”
Do your research
There is just so much to learn about the wonderful world of autism. Google and research it, challenge your own thinking and perceptions, but don’t believe everything you read as there are a lot of negative but authoritative-looking sources out there.
Be aware of any organisation that talks about Applied Behavioural Analysis (ABA), or that has a mission to “cure” autism, or that doesn’t have any #ActuallyAutistic people on their boards. These types of organisations are damaging to autistic people because they provide “therapies” and perspectives that traumatise autistic people further instead of supporting them to be their best and truest autistic selves.
Some good places to start are:
- Lost in Translation: The Social Language Theory of Neurodivergence (article)
- Odd Girl Out by Laura James (book)
- We’re Not Broken: Changing the Autism Conversation by Eric Garcia (book)
- NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman (book)
- All Cats Are on the Autism Spectrum by Kathy Hoopmann
- Amaze (organisation)
- Aspect Australia (organisation)
- Spectrum News (global news source)
Understand the 7 stages of a diagnosis and what they’ll be going through
The seven stages of a diagnosis according to Maisie Hill from the Period Power podcast, who is also a late-stage diagnosed autist, are:
1. Prerealisation
2. Validation
3. Outrage
4. Confusion
5. Despair
6. Hope
7. Acceptance
This journey is really, really tough, and the Despair phase can be truly horrific. You can read about my personal experience going through the 7 stages. You can also listen to Maisie Hill talk about her autism diagnosis process, and you can hear her talk about the 7 stages of receiving a diagnosis.
Your friend is going to be unpacking internalised ableism. They will look back at their life through a new perspective, unraveling relationships breakdowns, issues at work, and putting sense on comments people have made off-hand to them throughout their life. They will be realising they’ve been hindered by an invisible disability, and will be feeling let down by teachers, parents, doctors and psychologists for missing this diagnosis all these years. They will grieve for a life they missed out on, and for a life that they thought was to come but one that will now be different.
Expect difficult conversations and situations. Some of it may be about you, or other people that you personally are fond of. Some of it may just be extremely sad and depressing. But remember that this isn’t about you — your friend is going through one of the most traumatic and life-changing life events they’ll ever experience.
Stop and listen
Your friend is most certainly going to want to talk about this with you. By the time they get a formal diagnosis, they have probably spent hours, days, months, most likely even longer, researching autism and they will want to “infodump” about their new “special interest”.
Infodumping is a style of autistic communication, where the autistic person will provide a lot of information about a topic they are passionate about, also called “speaking in paragraphs”. Instead of the neurotypical style of communication which is more like a game of tennis where the conversational ball is hit back and forth, autistic communication works more like where one person at a time has a talking stick.
It takes a lot of energy for an autistic person to adjust to neurotypical communication styles, just as it will be for you to adjust to theirs. Be patient.
A lot of what your friend is going to be telling you is probably going to be completely new and unchartered terrain. For both them and you. They have probably just learned that they have subconsciously developed trauma responses without realising, and that they’ve never truly understood the true meaning of a lot of conversations, and that they’ve actually been bullied for being autistic, not just because people are dicks. They’ll realise they’ve been masking for years, which is a trauma response developed to avoid being bullied for being “weird” and to try to fit in, and this masking could be so well-developed and convincing that this unpacking process becomes existential because they no longer know who they actually are or what they like. Understand how harrowing a process this must be — try putting yourself in their shoes and imagine how overwhelming it would be and how you might cope.
When they talk to you, remember that their communication style is based on literal statements, instead of the neurotypical suggestive judgements communication style. So if they say to you, “You haven’t been texting me,” they aren’t inferring a judgement of “You haven’t been texting me, therefore I believe you are a bad friend and you suck as a person.” They are literally just saying you haven’t been texting them. Don’t get mad at them and just listen to their words — they probably just want you to text them more.
Inevitably, you’re going to fuck up and say something wrong. Just apologise and move on. It’s okay to make mistakes, but expect them to be pointed out because autistic people are direct and blunt. Know that you might get it wrong, but still try because they are ultimately the same friend you knew and loved before — they just have new and better words to describe their lived experience now.
And remember — just because you haven’t lived the same experiences as them or have felt the same feelings or emotions, this doesn’t invalidate what your friend is feeling. Unless you are a late-diagnosed autist yourself, you won’t truly be able to relate and that’s okay. Just be willing to listen and learn.
Be a supportive friend
Everyone has their own personal expectations and preferences for what a “supportive friend” looks and feels like. Autistic people are more likely to prefer non-verbal communication (text, email, Messenger), or to talk while doing a shared activity such as walking in nature or participating in their special interest (because this often reduces the need or expectation to make eye contact or to speak verbally, which can take great effort for an autistic person).
Try to be accommodating for changes they’ve now realised they need in order for them to conserve as much energy as possible, because autistic people have significantly lower social batteries than neurotypical people. If you invite them out socialising or over dinner with a group and they say, “I’d prefer to meet up 1:1” that means they while they could meet up in a group, it will be very exhausting for them and they would rather meet up with you 1:1. Most autistic people feel more comfortable with just one other person at a time, or in very small groups or intimate settings.
Due to the social stigma associated with autism, it is very common for autistic people to lose friends and social connections once they start telling people about their diagnosis. This period can be extremely isolating. Your friend is going to be at their most vulnerable, and if they are also a woman or person of colour they are going to feel even more failed by society than they did before.
Don’t tell them “to reach out if they need anything”. This puts all the effort onto the person who is already going through a major life event. Send them a message every few days. Ask them if they are okay. Ask them what new things they’ve learned that day about autism. Show up for them.
Remind them of their positive traits
The diagnostic process is based on a deficit model. This means your friend has likely just received a very detailed report listing out everything that is supposedly wrong with them (according to the DSM-5 and neurotypical expectations). The things listed in this report are fundamental to who that person is and can’t really be changed, so receiving this diagnosis and reading this about themselves will be incredibly traumatic.
But your friend hasn’t changed in any way from the person you knew before, and that person you knew before had many positive traits that you loved them for. Remind them of what they are, as often as you can. They will need to hear it.
A few positive traits that your autistic friend may have are:
- desire for justice, equality and fairness
- passion and thirst for knowledge
- attention to detail and accuracy
- creativity, imagination and how they express themselves
- deep concentration and focus
- reliable and loyal
- methodical, analytical, pattern recognition
- speaking their truth, being honest, no hidden agendas
These are all wonderful traits. Remind them.
Follow some autistic content creators
Most of the literature about autism is written by neurotypical psychologists and researchers. While there is use in this, truly the best way to understand autism and the autistic experience is by following autistic content creators and hearing them tell their stories. Some incredible creators include:
- ndwellness (TikTok)
- chillingadventuresofsab (TikTok)
- neurodivergent_lou (Instagram)
- autieselfcare (Instagram)
- neuro_divers (Instagram)
- ethereal_autistic (Instagram)
- autisticparkranger (Instagram)
- Michael McCreary — Comedian (Facebook)
- Autistic, Typing (Facebook)
- Harry Thompson — PDA Extraordinaire (Facebook)
- Rory Reckons (Twitter)
- Asiatu Coach(Twitter)
- ThisIsJordanKay (Twitter)
- Tayla Grant (Twitter)
Congratulate them on their diagnosis
Your friend has probably been searching for answers for years, if not decades. The journey they have taken to get to this point will have been long, confusing, stressful, and traumatic. But finally, they have answers. They have words to describe their lived existence and they will probably be feeling seen and heard for the first time in their life. This is a pivotal and life-changing moment for them. Buy them a cake.
Dear Friend of the Recently Diagnosed, thank you for reading this. The fact that you got this far shows you care. Your friend is going to get through this with someone like you by their side. ❤
Thank you to the people who contributed tips for this article. You know who you are. You are wonderful and appreciated.
