“You have autism? Oh, I’m so sorry.” What to say (and NOT say) to autistic people.


 

I make no apologies for my Asperger’s. And neither should anyone else.

 

To anyone who doesn’t know, the ‘I’m so sorry’ line is something that should never, ever be uttered to an autistic person. (Or, in fact, the parents of any child with special needs.)

Unless you're this guy. We'd let The Doctor say it. Trust me, geeks will get this.

Unless you’re this guy.
We’d let The Doctor say it.
Trust me, geeks will get this.

At least, not about their autism. Other things, maybe, but not the mere fact that they’re autistic. I’ll go into detail below.

 

First things first though, I’m sure that everyone who says this means well. So I don’t want to go in all guns blazing (figuratively) against people who are honestly responding in the kindest way they know how.

This article is written to help you respond when someone says “I’m autistic” and you have no idea what to say next.

Ron Weasley

“Autistic? Is that like being a wizard?”
“Yes, Ron. Yes it is.”

(For the record- if someone tells me they’re autistic, I usually high-five them. It’s rare that we bump into each other. We’re 1% of the general population.)

 

First off, five things you should NOT say.

There’s more than five out there (a lot more), but I want to leave room for positive things too! And in case this advice isn’t enough, there are

plenty

of

other

pages

on this subject

that may also help you.

 

1. “Oh, I’m so sorry.”

Sorry for what, exactly?

No, be specific. What is it about our autism that you’re sorry about?

 

Some autistic people (myself included) do NOT see it as a life-limiting disadvantage. And others do.

If you say “I’m so sorry” to someone who’s optimistic about their autism, it’s quite patronising.

Worse still, if you say “I’m so sorry” to someone who’s pessimistic about their autism, you’re basically telling them they’re right to feel bad about it.

 

Sympathy is an important human reaction. But please be specific about what it actually is you’re sorry about.

Er... thanks?

Er… thanks?

To help, here’s a quick list of what you can and can’t be ‘sorry’ for.

 

You can be sorry if the person mentions:

  • Feeling socially isolated
  • Losing friends because of misunderstandings
  • Struggling in school
  • Fighting against unemployment
  • Struggling to find their place in the world
  • Eating a chocolate chip muffin only to find the chocolate chips are raisins.

 

You shouldn’t be sorry if the person mentions:

  • Being autistic, just in general.

 

Again, at least the people who say this are honestly trying to be sympathetic. Unlike plenty of people who use this next line…

 

2. “But you don’t look autistic.”

(I have since written an article entirely about this sentence [opens in new window], filled with glorious sarcasm.)

This is a widely condemned phrase, but it’s amazing how many people out there still use it.

Personally, my automated response is “what’s an autistic person supposed to look like?”

 

To demonstrate my point, let’s play a game. Take a look at these six awesome lads below.

One of them has Classic Autism.

One of them has Asperger Syndrome.

One of them has ASD (autistic spectrum disorder) and GDD (global development delay).

The other three are not even close to being on the autism spectrum.

 

Ok, get diagnosing!

It’s extra tricky because five of them are making eye contact, and the sixth is too busy enjoying the awesomeness of a bouncy castle.

It’s extra tricky because five of them are making eye contact, and the sixth is too busy enjoying the awesomeness of a bouncy castle.

 

Not easy, huh?

Answers at the end of the article. Just to frustrate you. (Besides, some of these photos belong to autism pages you really need to look at, and it’s better to do shout-outs at the end.)

 

I think people expect autistics to look like the severely affected kids you see in the media- who don’t talk, never make eye contact, rock back and forth in their chairs, and so on.

But the autism spectrum affects people mildly too. That’s why they call it a spectrum.

 

So when we hear “really? You don’t look autistic!” we basically hear “really? You don’t match the list of clichés you’re supposed to have!”

And since we like to think we’re more than clichés, it does come across as derogatory.

 

shutup

 

3. “Really? What’s 247 x 523?”

Three reasons why this won’t work.

1) Not everyone on the autism spectrum is awesome at maths. That’s a stereotype spread by the movie Rain Man, which covers savantism more than autism. The stereotype has stuck for decades, because at the time barely anyone knew what autism was. Rain Man was their only exposure to it. (These days, Sheldon Cooper probably has the equivalent impact. But at least he’s funny.)

2) If you put someone on the spot with zero notice, it’s pretty uncomfortable. Often we (like other people) are brilliant at something until everyone’s staring.

3) I have a maths degree and even I can’t answer 247 x 523 off the cuff. It’s difficult, you know.

 

sheldon

 

4. “But you’re making eye contact!”

Kind of an extension of “not looking autistic”.

(Warning: the following contains multiple, copious uses of the word ‘normal’. And I hate that word but I’m using it to make a point.)

 

I have worked with dozens of severely autistic children, and I can’t remember a single one who didn’t look me in the eyes once in a while. So even the stereotype itself is less accurate than you think.

 

I can promise you, people with Asperger’s or mild autism do make eye contact. Why?

Because it’s the normal thing to do.

All too often, the best defence we have is pretending to be normal. There’s nothing more tragic than blending into the crowd, but sometimes the crowd doesn’t meet you halfway. We learn how to make good eye contact so others don’t see us as being quite as awkward.

 

Or, to put it another way:

People with Asperger’s often know more about looking normal than most ‘normal’ people.

This is because normal doesn’t come naturally to us, so we have to actually study it.

 

Yes, we make eye contact. Because the alternative is not making eye contact, and being seen as ‘unnatural’.

 

5. “Oh, we all feel like the odd one out once in a while.”

Accurate, but belittling.

Picture the following conversations.

You: “I have learning difficulties.”

Some guy: “Oh, we all find learning difficult once in a while.”

 

You: “I have a severe nut allergy.”

Some guy: “Yeah, I don’t like nuts either.”

 

You: “I have Alzheimer’s.”

Some guy: “Oh, we all forget things as we get older.”

 

I don’t want to paint autism in a massively negative light: we DO have more in common with others than we think. And it IS true that we’re not alone in feeling isolated once in a while.

 

But saying “we all feel like that” as a response to someone’s problems is trivialising them: it’s taking something that an autistic person may see as a lifelong curse and telling them it’s not a big deal (and, therefore, they must be wrong to think it matters).

 

I don’t see my autism as a curse. Sometimes I actually find it awesome. But not every Aspie is as positive as me (yet).

 

So what DO you say?

It depends entirely on the person, and how well you know them.

 

If you know the person…

You’ll know better than me how to personalise your response. But in general:

  • If you’re surprised, you don’t need to hide it. There are positive ways to be surprised. Just don’t look shocked!
  • Let them talk, and let them take their time. And seriously, please don’t interrupt.
  • Asking questions is fine, although the ‘right’ questions will depend on your relationship with them.
  • I just realised that I’m an autistic man telling non-autistics how to socialise correctly. This bullet-point isn’t part of the advice- I just find the irony staggering.
  • Assure them that nothing’s going to change because of what they’ve told you. Well, not in a negative way at least. Because they’re exactly the same person now as they were five minutes ago.
  • Often you don’t need to do anything to help them. Hearing, understanding and appreciating them will often be enough.
  • Oh, and it takes strength to admit your weaknesses to people. Respect them for that.
  • Above all, remember that they’re trusting you. So, be trustworthy.

 

If you don’t know the person…

  • Be interested. You can learn quite a lot from them.
  • Listen to them. They told you about their autism for a reason.
  • Ask (non-invasive) questions if you think they’re comfortable with it. This shows you’re willing to do both of the above.
  • Be supportive without being patronising. In many cases they’re telling you about a difference they have, not a disability.
  • If they’re telling you about how it affects them negatively, be sympathetic. If they’re just telling you general facts about having it, be careful before looking really really sorry for them.
  • If you want to mention your autistic relative or your neighbour’s autistic kid, do so in the spirit of conversation. Just make sure it doesn’t sound like you’re comparing them (or expecting them to have loads and loads in common).
  • Above all, just have a conversation like you would with anyone else (with appropriate sensitivity). But let them have the bigger say in how the conversation goes. After all, they’re the ones who took the leap of faith in telling you. They took the braver steps, so it’s their show more than yours.

 

This is only here because the last picture was a while ago now. Here, enjoy this one.

This is only here because the last picture was a while ago now. Here, enjoy this one.

 

Examples of how people have done it right:

Old friends from school who I grew up with:

“Ah, that makes sense now I think about it.”

“That does explain a lot about [examples].”

“You’re the same Chris we’ve known for years. We’re here for you and everything, but it’s not going to change anything if you know what I mean.”

(During a conversation about the difficulty of romance) “Look on the bright side. You’ll never, ever forget your anniversary!” (He was fine cracking this joke because he knew it would make me laugh!)

(At the end) “That’s really big of you to tell us. Thanks for that.”

 

Teachers and headteachers I’ve worked with:

“Is there any kind of support you need?” and “is there anything you need us to adapt that would help you?”

“To be honest, I’m not too surprised. Because of [list of positive things they’d observed about me].”

And some general banter in the staffroom (there’s a note about banter below).

 

Random people I’ve met:

“I have to admit, I don’t know much about autism. Could you please explain it to me?”

“Well you’ve clearly done well for yourself, haven’t you?”

And, of course, people just generally being interested in hearing my perspective.

 

And finally, a little advice to autistic people.

When we talk about something that’s emotionally difficult (like telling people about our autism), it’s easy to get caught up in how we feel. So it’s VERY easy to forget how the other person feels.

Often, if the other person says something you don’t like, it doesn’t always mean they’re nasty or ignorant. Sometimes they’re just nervous! Because when someone says something important and you have no idea how to respond, it’s a little nerve-wracking. It’s that way for other people too.

Also, the other person will know that silence is not an option. They will feel like they have to say something. And if they know nothing about autism (yet), it’s difficult to find a good sentence to reach for.

 

Also (if the person knows you well), I’d encourage you not to be afraid of banter.

For example: one of my friends takes the mick out of me for being autistic. In return, I take the mick out of him for being ginger.

With most people, taking the mick out of my autism would be totally unacceptable. But we’ve known and trusted each other since we were 11, and having a close friendship means occasionally poking fun at each other, in a friendly way. It’s sort of a sign of trust- you trust them enough to know that they don’t mean it offensively, and they trust you enough to know you don’t mean it offensively either.

That said, make sure you can actually trust them before letting the banter begin. I’ve had false friends before. But if they are true, honest, close friends, jokes toward each other are fine.

 

All the best,

Chris Bonnello / Captain Quirk

 

…So, how many did you get right?

1, 2 and 3 are on the spectrum.

4, 5 and 6 are not.

 

1 has Classic Autism, 2 has Asperger’s, and 3 has ASD/GDD.

See? Told you there’s no such thing as ‘looking autistic’.

 

kids9Number 1 is Quinn, who appears in the Growing Up Autistic article. But since he’s already been viewed 11,000 times on this site, I decided to use a much younger picture for the quiz.

His mother built this site and designed its logos. As you may have noticed, she is rather good at both web design and raising possibly the world’s happiest autistic boy. Show her some love, either on her main site (link leads to her insightful section about autism) or her Facebook page.

 

kids6Number 2 is Morgan- a wonderful 11-year-old boy with Asperger Syndrome, who’s been the victim of severe bullying. He has his own Facebook page, Planet Morgan: Aspie Superhero, where people can show support for this awesome, awesome kid.

If you’re against the bullying of autistic kids, please view it, like it, and give him a big salute!

 

 

kids1Number 3 is Charlie, aged 5. His parents launched A Year in the Life of Autism, which is both on Facebook and YouTube. They’re very supportive and deserve support in return. Hint hint. 🙂

 

 

 

If you picked 4, 5 or 6, you just misdiagnosed a child who has no trace of autism. (See how easy it is?)

All three are the sons of my friend Carol Anne, who has been absolutely invaluable as both a friend and a blog adviser. Unfortunately, there is no longer an up-to-date blog I can shout out to!

 

And a bit of geeky mathsy stuff:

There were 20 combinations of choosing three out of the six pictures. Only one combination involves getting all three wrong. So before you congratulate yourself on getting one of the autistic kids right, 19 out of 20 computers choosing randomly would also have chosen at least one of them correctly! (8 out of 20 would get two or more right, if you’re interested.)

These 20 combinations, of course, ignore the three totally different diagnoses among the boys. There is a massive difference between Asperger Syndrome and Global Development Delay, for example.

And if you got all six pictures right, please show off in the comments about how much of an expert you are on autism now. I look forward to you making successful diagnoses of random children you see in the street.

</sarcasm> 😛

 

Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).

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35 Comments

  1. Didn’t you memorize the 523 timetable for situations such as these?

    Post a Reply
    • I’m afraid not. I got up to 500 and thought that would be enough. Stupid me. 😉

      Post a Reply
  2. Hi fantastic blog post! My son is an aspie – I think he gets it from me 🙂 – and to be honest he’s so much more interesting than most kids. I think being autistic is a privilege, shame the world is too dull a place and we often have to adjust to boring ‘normality’.

    Post a Reply
    • I’m so glad to hear an Aspie’s mum saying that. 😀 And I agree. I once even heard someone say “God created Asperger’s to offset the number of really boring people on Earth”! 😉

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  3. I spotted the kids, but only because of particular traits I recognised in kids I work with (I’m President/Secretary/IT/horse manager assistant type person in training/horse leader/everything frigging else! at Riding for the Disabled), and even then I wasn’t sure because it can be deceptive; is that kid autistic? Maybe he just didn’t sleep so well last night and that’s why he’s slow to respond. Maybe he’s feeling guilty about the mess at home his Mum hasn’t found yet, and that’s why he can’t meet my eye…

    Many people believe I’m an Aspie, and the more first-hand accounts I hear, the more inclined I am to agree. I saw a psychologist many years ago and he decided two seconds in that I wasn’t on the grounds that I met his eye and could form a sentence. University degree well spent, eh?

    I want to get it properly investigated, but only so I can explain my ‘weird’ traits to people easily. At the moment it’s a case of “no, I’m not being rude, I just find it really boring to listen at length to your monologue about the latest reality show. And yes, you did interrupt me, I don’t care that I hadn’t made a sound yet, if you stopped talking for five seconds you’d see that the intake of breath and openimg of my mouth WILL be followed by words. It’s not my fault you think you have a word quota to meet. And if you wanted me to put those in the drawer, why ask me to take them into the office. I took them into the office, why are you so mad?”

    Sorry, tangent.

    P.S. Do loud people physically hurt you? When people talk to me I tune out because it’s like they’re burrowing through my brain. And then they get mad because “you’re not listening to a word I say!” And when I’ve screamed because it’s just so overwhelming I get yelled at for being dramatic. I’m really not. I just can’t handle the input!

    Post a Reply
    • Well done for getting the reference! 😀 And I got misdiagnosed the first time as well…. by a junior doctor who made me do an online test and then told me I wasn’t severely autistic. As someone who worked in a special school at the time I could have told him exactly the same thing (and I’m pretty certain I did).

      Most of that third paragraph I could have written myself- especially the bit about interruption! I hate that so much- I feel like I’m deliberately being silenced, except I’m not allowed to be annoyed with the other person because they don’t realise they’re doing it!

      To answer your question, I find that loud noises *occasionally* feel like they physically hurt, but only if I’m not in control of them. When my classes were doing noisy activities that was fine because I could quieten them down whenever I needed, but if someone’s hoovering in the background I just can’t stand it!

      Post a Reply
  4. From one Autistic / Aspie adult to another, I love your sense of humor and hope you will continue blogging regularly. The autism community and the world in general can certainly benefit from your perspective. 🙂

    I also wanted to give a shout out to the acknowledgement that eating a chocolate chip muffin only to find the chocolate chips are raisins is a real downer. There is a line that makes the rounds with comedians here in the USA and probably around the world as well, “Raisin cookies that look like chocolate chip cookies is the main reason why I have trust issues.”

    Post a Reply
    • Wow, thanks a lot for the comments! 😀 I definitely plan to be more active on the writing front, not less. 🙂
      And, come to think of it, that joke may be (subconsciously or not) my reason for using that example. Incidentally, I was wondering how many people would read in enough detail to spot that! 😉

      Post a Reply
  5. Just recently found your blog, and am enjoying reading through it, very informative. Am a recently diagnosed Aspie in later middle age (old in body, young at heart!). Suprised myself by identifyling all the pictures correctly, including specifics. Can only attribute this to part of my traits being to ‘notice everything’ and making correlations. Would be interesting to know, do Aspies/Autistics select the correct pictures more than others?

    Post a Reply
    • I’m conflicted on that one. On the one hand, I specifically chose those pictures to be as deceptive as possible. On the other, I personally recognise an “Aspie smile” wherever I see it!
      Thanks for the compliments. 🙂

      Post a Reply
      • Didn’t even think of the aspie smile, but it’s the only picture I did get! Must be because I see that type of handsome smile every time I order school pictures for my son ?
        Thank you for this post. I am re-posting it to my wall. We just had to move my 10 year old to a school that specializes in kids that are Aspie’s. Even with our IEP in the public school, the kids were bullying him incessantly and the teachers were labeling everything a disobedient behavior. I hate to say that even though awareness is high, intolerance is also extremely high for anyone who is not a cookie cutter mold of what society expects. Sad ?

        Post a Reply
        • I’m really glad your son’s in a place that knows how to provide for him better. 🙂 I wish him (and you!) all the best. And thanks!

          Post a Reply
  6. Good on you for this blog, we have an 11 yr old aspie who has only been diagnosed recently and its great to hear that someone else has the philosophy that this Diffability……is actually one of our greatest strength when our kids are taught to harness their ability to think differently.. Good on ha, look forward to more blog posts from you

    Post a Reply
    • Thanks a lot for the comment! It’s so easy to think that different is somehow ‘less’ simply because it’s not how most people work. I really hope the diagnosis was a positive experience for your 11-year-old and that it will make growing up easier and more positive. 🙂

      Post a Reply
  7. Nobody but my friends and family (not all my family) are supportive of my Asperger’s. Teachers for example don’t recognise that I struggle to understand what an author is alluding to and then expect me to write an oral presentation on it.

    Also, I did Diagnose them correctly.
    I figured, the first one seems hyper, of course he could just be a kid on a sugar rush, but the other 5 options were kids smiling with nothing unique in the picture.
    The Second one was wearing a brown suit while 2 others were wearing black, being the odd one out is something I associate with myself, so I said he has Asperger’s.
    I figured it 1 was 1, and 2 was 2, then 3 would be 3. Flawed logic and not a diagnosis. But I still guessed correctly which is worth a half mark.
    2.5/3 I did good.

    Post a Reply
    • Ha, your thought process sounds similar to mine. 🙂 2.5/3 isn’t bad at all.

      May I ask how old you are, or at least how many years of school you still have? It surprises me that your teachers don’t recognise your difficulties, but I can assure you that once school’s over, it is over forever. 🙂 You won’t have to do oral presentations at all after that unless it’s part of your job. And even then they won’t be about authors. 😉

      Post a Reply
      • 16. Year 11. One more year after this one.

        Post a Reply
        • Ah, cool. I guess the advice I’d give, bearing in mind you’re so close to the end of compulsory education, is to focus on getting the results rather than on what the teachers think of you. Tricky at times I know, but you won’t have to deal with their opinions for much longer and the exam results may give you some great opportunities once you leave.

          Also, I noticed that you said “nobody but my friends and family” are supportive. Remember not to underestimate the importance of having supportive friends and family. 🙂 Everyone else after that should be secondary.

          Assuming you’ve completed this year’s exams already, enjoy the long summer!

          Post a Reply
  8. I got all three right! I am autistic, I think I was able to do it because I and very sensitive to what ‘normal’ people look like, and how they express themselves seems less.. strained? I’m not sure. Great blog Chris.

    Post a Reply
    • lol, I’ve often heard that people like us know more about being ‘normal’ than most ‘normal’ people- after all, we’re the ones who have had to study it! 😉
      Thanks for the comment. 🙂

      Post a Reply
  9. Thanks so much for your blog. I did pick the three kids, possibly because I am a mother to two kids with ASD and an infants teacher who works with kids at an age where they often get diagnosed (lots of tick charts completed over the years). But still not an expert and have definately would have missed a few over the years.

    My own kids have had some great teachers over the years as well as some complete disasters (including one who thought yelling at my son would stop him crying, go figure). We also had issues with diagnosis. The first doctor said he didn’t have aspergers because he could 1) look people in the eye; 2) had a high vocabulary; and 3) didn’t line up toy cars. Never mind he used to create hundreds charts by the hundreds, spoke like a professor at age 5, screamed when the sun was in his eyes and ran away from the sound of a hand dryer in bathrooms.

    I’m so glad a friend shared this blog. I’ll be showing it to my 12 year old son who will be navigating his way through high school next year.

    Thanks again

    Post a Reply
    • Thanks for the compliments, and I hope your son gets something out of it (well, both of your kids actually)! 🙂 I particularly recommend Growing up Autistic if you haven’t read that one yet- it’s specifically written for people like him.

      Glad you’ve managed to find your way through the diagnosis labyrinth! People continually failed to diagnose me too, so I hope your sons find it easier to get whatever support they need now they’re diagnosed. 🙂

      All the best from a former primary teacher. 🙂

      Post a Reply
  10. I had someone say “You make autism look good.” I think it was a compliment, but it seems rather harsh to everyone else with autism.

    Post a Reply
    • I actually have a shirt with that on. 🙂 But now you mention it, it is open to different interpretations.

      I like to think that most autistic people make autism look good. As long as they’re good people, of course. 😉

      Post a Reply
  11. I got all six correct. I used deductive reasoning. :p and trusted my self. I have been diagnosed with adhd but I suspect either in been misdiagnosed or I’m comorbid Aspergers.

    Post a Reply
  12. Hi Mr. Bonnello, I only started my blog this year and this is a topic which I’ve been wanting to write about in my blog, principally I want to address the issue of trivialising the problems of people with autism/Asperger by responding with “We all have bad days.” This piece you wrote is one of the references I referred to and I hope you don’t mind me referring to it in my post. Please welcome to visit my blog at your spare time.

    Post a Reply
  13. So has anyone had experience of telling an employer, and still being considered for a management job? A lot of these traits make it hard to be a good people manager, but help when dealing with organisational stuff, and with financial planning. The lack of people skills has been an issue all my life, but when running my own business I have always found ways to cope, but I do not feel confident that my employer will let me try. Any advice on how to handle this situation please?

    Post a Reply
    • Hi Sally- if you want I could post this question to Autistic Not Weird’s Facebook page? You may get more responses there. 🙂

      Post a Reply
  14. Thanks for the blog. My 5 year old has just been diagnosed. I couldn’t accept it for all of the clique reasons above (feel like an idiot of elephantine proportion). She’s mildly autistic, with a High IQ. I can see how difficult it is for her but she copes so beautifully. Personally feel that her autism makes her a very popular kid because she is so full of wonder, exploring this strange world around her. Expressing her thoughts literally and making us so aware of how “weird” us “normal” people are.

    Post a Reply
  15. Liked the article. You mentioned, “…it’s easy for us (with Asperger’s) to get caught up in how we feel. … Often the other person says something you don’t like, it doesn’t mean they’re nasty or ignorant. Sometimes they’re just nervous!”

    I find it so surprising that NT’s want us to recognise that about them, yet they do not mirror that for us. Maybe, there should be an article for them to explain to us “How come their rules change when they’re supposed to be the ones with empathy?”

    Many of the same issues we experience with and find hard to deal with, the NT finds them hard too. The difference is – they’ve taught themselves to manipulate the situation and the other person. When we ‘call them out’ with out bluntness, they don’t like it and go on to shed alligator tears to make it look like, seem like and sound like they are the innocent party.

    Post a Reply
  16. Great article, came to this one from the post about not looking autistic. I totally get that one as I wasn’t diagnosed with Asperger’s till I was 45. It was only after years of extensive reading to support my Aspie son that I came across articles about how girls and women often present differently to boys. Luckily I have a great GP and when I raised it with her she smiled and agreed to send me to a psyche for evaluation. When I told her the results she laughed and said welcome to the club. She is also an Aspie 🙂
    Looking forward to reading more of your posts xx

    Post a Reply
  17. I identified 1,2 & 3 as on the spectrum. I didn’t try to identify by exact diagnosis, that would be impossible. I have a son who I believe to have Asperger’s. He has never been diagnosed as anything other than ADD with mild anxiety. But mom’s know.

    Post a Reply

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