10 things not to say to someone with Asperger’s

Inspired by Therese Borchard‘s piece about 10 Things Not to Say to a Depressed Person, I thought I would write my own list of things not to say to someone when they tell you they have Asperger’s Syndrome (AS).

1. I’m sorry (you have Asperger’s).
Don’t be.  I’m not.  Finding out that I had Asperger’s was the best thing that ever happened to me.  Yes, some days when I’ve particularly struggled with AS-related issues I wish I was better at certain things, but I am who I am, and I am where I am, because of Asperger’s, I wouldn’t change that for anything.

2. Can you get treated for that?
My objection to this question is the medicalisation of something I see as a difference in thinking.  I don’t subscribe to the ‘disease’ model, so I am not enamoured by the ‘treatment’ proposal.  Some aspects of my life respond to supportive therapies (for want of a better word), for example having AS makes me prone to anxiety and depression, for which I have found cognitive behavioural therapy (CBT) rather helpful.  But I wouldn’t say that I have CBT for Asperger’s, or that my anxiety and depression are qualitatively different to those of a Neurotypical person – yes the things that make me anxious may be different, but the experience is pretty similar from what I can see.

3. Are you sure you’ve got it?
Yes.  It was a testament to our friendship that I confided in you in the first place.  Your doubt feels like you either think that I am a) so un-self-aware that I may have made a mistake, or b) a fraud.  You want me to be ok, but you are missing the point that I am already ok, and that this is a wholly positive and important ‘label’.  I don’t want to feel like I must justify my way of being.

4. You seem so normal…
This is a related statement which usually follows No.3, and should convey a sense of praise and admiration for all the effort I put in, day in day out, to ‘pass’.  However it feels like the opposite, like a denial of the hard work because there’s ‘nothing wrong with me’, and it comes with a value judgement that because I say I have Asperger’s, I am somehow deficient and abnormal.

5. Can I see what you’re like when you’re being more Aspie?
No.  Apart from the fact that there’s a reason why I try to act more Neurotypical (it reduces my feelings of self-consciousness, anxiety, and awkwardness for a start), it has become such a way of life for me that I am not sure that I would know how to undo it (or why I would want to).  I would be performing for you an approximation of my perception of what you want to see, like some sort of side-show.  It would be like me saying to you, “Can I watch you have an unpleasant and private Doctor’s consultation?” because I want to see what you are like when your guard is completely down.  Plus there have been times when, to paraphrase another great article, My Autism was Showing and you did not respond with joy or pleasure, you felt embarrassed and awkward for me.  You are asking me to reveal my very core, my true self, the self that I have spent most of my life trying to mask, even from my nearest and dearest.  You are asking me to be completely vulnerable and exposed when, if you truly knew me, you wouldn’t need or want to ask.

6. You like watching TV?  Get a life.
Get lost.  If I’ve heard this once I’ve heard it a thousand times.  I even saw in someone else’s blog (which shall remain nameless) that the No.2 way (of 9) to be ‘exceptionally boring’ is to watch a lot of TV.  In fact the whole of his post was basically a description of me, largely my Asperger’s traits and behaviours, which I found rather offensive.  I told him this in a tweet but all he did was follow me.  Perhaps he is looking for inspiration for the second part of his post on how to be ‘boring’.

7. You should get out more.
No thanks.  I have a bit of social anxiety, but mostly I really love my house.  You have to realise that I have actually considered going out lots of times, and about four days a week I do leave my house.  But I am always pleased to return, much as you must be pleased to go somewhere you like.  Why is there something wrong with my choice of favourite venue, just because it is my house?  I know who is going to be there and no-one tries to make me do things I don’t want to do.

8. You’re too sensitive, you shouldn’t let things get to you so much.
This one predates my diagnosis by a good twenty years and has got no less annoying with time.  Even if I could be ‘less sensitive’, if I knew that your cruel remarks were meant to be a ‘joke’, if I wasn’t hypersensitive to sound and light and pain and heat and crowds, if I could stop myself from crying the first instant that I was remotely stressed, then perhaps your comment would be valid.  I can’t, and perhaps you should be more sensitive to my sensitivity.

9. So do you not have any feelings?
I’m actually having one right now, and it’s not one of the fluffy ones.  Yes I have feelings, I’m a person!  I may have difficulty identifying them quickly, or articulating them to someone else, particularly when they are subtle, but I have them and they do affect me.  Sometimes there is a right-brain/left-brain block and I have to work out my feelings backwards via my actions, but they’re there once I know where to look.

10. Do you think you should have children?
Let me stop you right there.  Let me stop you before you make a complete idiot of yourself and I call you a “<ahem>king eugenicist” and never speak to you again.

I don’t get these questions every day, or all from one person, but these are the recurrent ones which make me feel uncomfortable and highlight some of the gap in understanding.  This is one of the longer posts I have written, but it is autism acceptance month after all.  Thank you for reading.

© Catastraspie, 2012.

Robert Plutchik's Wheel of Emotions

Robert Plutchik's Wheel of Emotions (Photo credit: Wikipedia)

  • I must credit Samantha Craft for drawing my attention to the original article on which this post is based, and direct you to her acutely observed post: Day 81: 20 Things Not to Say to a Person with Aspergers (aspergersgirls.wordpress.com) PS Because we were writing at the same time I hadn’t read Samantha’s blog until after I posted mine, but I now have and it has a particularly useful section on how to respond positively when someone tells you they have Asperger’s.
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35 Responses to 10 things not to say to someone with Asperger’s

  1. Louise says:

    This is a very good article because with some of these questions I get asked a lot. The most common and annoying one is “you look so normal” Really? Please, pray tell, what does a person with aspergers look like?

    • catastraspie says:

      Thank you! Yes it is a strange question. I’ve not noticed any particular commonalities that would typify the ‘look’ of a person with Asperger’s, although my friend reckons guys with AS have tufty hair!

  2. I love how you give your take on how you would feel if someone said those statements to you. Very well done. Thank you for linking my blog. Hugs! I love staying indoors and watching tv. And I will always be too sensitive, but proud to be. :)

    • catastraspie says:

      Thanks! They are very much the answers that go through my head, but which I hold myself back from saying because I have learned not to speak my mind. I too am proud of who I am :-)

  3. Pingback: Comment on ‘Asperger’s Syndrome is not an excuse…’ | catastraspie

  4. nouske1971 says:

    Great blog! Especially the tv watching….it is the only thing I can do to really stay sane….I really need at least one day a week of complete nothingness….just lying on the sofa, under a blanket, watching the Investigation Discovery channel for hours on end.

  5. arifmvega says:

    Number 5 cracked me up lol.

  6. Yeah, all questions sound familiar in a way. I was quite upset, when I just was in a relationship with my Love, and my best friend asked me: ‘don’t you think it will be too hard, being in a relationship with someone who does not feel anything or has any emotions?’ while I already knew and had experienced that was totally nonsense. I’m glad she knows that as well now.

    • catastraspie says:

      Thank you for your comment :-) The list is somewhat flippant, and obviously mainly reflects things that are said to me as an idividual, so will not be representative, but it makes me feel sad that so many other people relate.

  7. Sylar says:

    Thank you for saying everything Ive ever wanted to say!!

  8. Movies989 says:

    I have a friend since Highschool who was recently diagnosed with Asperger’s. However, the more I study up on the subject the more his actions don’t make sense with the diagnosis. Is it normal for a person with Aspergers to make a fly to an airport just to see the air port and be happy about seeing the gift shops and then fly back to his apartment? Or complain insistently about everything? I really do try to be supportive of his likes and dislikes, but when it’s all about him and his needs, it’s not easy. I’m just trying to find the best responses for a him as he told me that he has Aspergers. However, main thing that he seems to want is attention and that’s it.

    • catastraspie says:

      Hi, thanks for your comment. It’s really nice that you want to read up on Asperger’s so that you can relate to your friend better and support him :-) I’ll start by saying that I can’t comment on an individual person, especially someone I don’t know. There isn’t a typical or ‘normal’ presentation for Asperger’s, each person is an individual with their own likes, dislikes, quirks, strengths and burning passions. People on the spectrum also vary in how self-aware they are, in their ability to hide their Asperger’s traits from others, and in how well they remember to ask after other people and their needs. You can learn a lot from reading other people’s accounts of having Asperger’s, but the best way to learn about your particular friend is to ask *him*. It’s ok to say you want to know him better. Your friend may just really like gift shops. I expect he’ll be able to tell you exactly why it was logical or necessary to fly to an airport giftshop and back. To be honest, I don’t know any neurotypical people who would do that (and own up to it!). You can’t really go on behaviour, because behaviour is affected by many different things, and you will probably only be able to interpret it from your own perspective. It’s the thoughts that are the really interesting part, and you’ll need to ask him about his thought processes. As an example, I don’t greet people unless I know them really well because I have difficulty recognising faces, I don’t recognise people if they’re out of context, and I’m terrified of getting people’s names wrong. On the outside it may just look like I’m rude or self-absorbed, whereas I am acutely aware of other people’s presence and don’t want to misjudge a greeting by under or over friendly, so I just avoid it. I think most human beings want attention, and acceptance, particularly if they may have grown up experiencing a lot of rejection and misunderstanding. It’s important that you don’t question his diagnosis, and just continue being a patient and caring friend.

  9. desertdarlene says:

    Good post. One thing I hear a lot is “I know a lot of people who have autism or aspergers and I know you don’t have it because they are way different.” Do you get that from people?

    • catastraspie says:

      Hi, thanks for your comment! I get that one quite a lot too, including from friends and relatives who have known me a long time and should know better. They always want to compare me with every new Aspie they meet too! I have learned to smile, bite my tongue, and ask them whether they think they could identify all people who have asthma or diabetes based on having met other people who have the same condition. I know it’s not the same, but it makes them think about it a bit :-D

      • autisticook says:

        I like that comparison! Yes, it’s not the same, but people with asthma or diabetes struggle with their disability being invisible a lot of the time as well, and having to explain that sometimes they can’t do what they were able to do yesterday, or what another person with asthma/diabetes can do. A friend of mine has MS and she runs into the same kind of preconceptions too!

      • catastraspie says:

        It’s interesting that some states of being/conditions seem to others to be fair game for questioning and criticism. As you say, it does appear to be related to invisibility and variability, as much as awareness and understanding. Perhaps rather than raising awareness/understanding of specific conditions it would be good to focus on raising awareness/understanding of hidden conditions and conditions that constantly fluctuate.

      • autisticook says:

        That’s basically the same conclusion I reached with the whole “high functioning / low functioning” thing. It’s not about whether we actually function in whatever area. It’s about how disabled we LOOK to others. That’s why I reject the high functioning label. Because I refuse to be labeled by how others see me.

        (Tangent: my ex told me my diagnosis was nonsense, because he never felt it was a problem in our relationship. He was far more inconvenienced by my mood swings and that’s why he thought I should have gotten a bipolar diagnosis. Newsflash: my diagnosis is NOT about what bothers YOU).

      • catastraspie says:

        Yes and people have a lot of strong feelings about labels. I think if you self-identify with a label that’s ok, but they shouldn’t come from others. I love your tangent, excellent point :-) My ex won’t even discuss it, because I’m not like the one other person he knows with ASC (who happens to be male anyway).

      • desertdarlene says:

        I agree! I have asthma and for years I couldn’t barely walk or stand for long periods without being short of breath. I was called lazy and other things because they “know lots of people involved in sports who have asthma”. Well, now my asthma is well controlled and I’m very athletic. I think if I could have done it before, I would have done it because I can’t believe that anyone wouldn’t want to exercise if they could. I’ve also been called crazy because of my hypoglycemia and need to eat about every 2 hours.

        The reason why I asked that question is that I know a teen who has Aspergers who has had a lot of problems relating and getting along with people. Once you get to know him and he was comfortable with you, he was actually a nice kid and I like him. But, he has trouble with saying inappropriate things at times or reacting to things the “wrong way”. One person claimed that his problems were not related to his Aspergers, but because he was a “problem child”. She says she knows this because she works with autistic children all the time. It really irritated me.

      • catastraspie says:

        Yes, it’s really annoying when people think they know everything, or they assume that all people on the spectrum will present in a similar way, therefore people who don’t fit don’t have it etc. I have some similar health problems to you and my pet peeve is being called lazy. There’s always a reason why people don’t do something, and very rarely is it about laziness!

      • desertdarlene says:

        I mean I like him as a person, not that I’m into teenage boys, lol.

  10. At least they’re comparing with the right condition. I have Dyspraxia (a ‘thinking disorder’ on the Autism spectrum related to Asperger’s) but frequently get told I’m making it up because “Dyslexics don’t have bad handwriting and they like sports”.

    Regarding bipolar, I get what you say about it not being what bothers others that should dictate your diagnosis. A lot of people complain about my handwriting (poor handwriting is a common feature of Dyspraxia) but it’s the working memory deficit that really bothers me.

    That said, when you get into autism spectrum things you do tend to find a lot of cohabitation and sometimes it’s a bit pick your specialist and pick your diagnosis. What you get formally diagnosed with can be a mixture of what traits happened to be to the fore that day and the particular interests of the specialist you’re seeing.

    • catastraspie says:

      Oh dear, yes that’s unfortunate, do you have to start with a definition of dyspraxia to ward off confusion? You are right about the amount of overlap, and I can imagine that different specialists will see different things in people. There’s different value in the various ‘labels’ too, some are easier to get and some get more support and research.

  11. GUY WITH ASPERGER says:

    I have an Asperger and don’t watch TV at all. Complete waste of time for me, when life’s so short. But I think the same thing about finding out about Asperger. I felt like detective who just solved a crime mystery :) But in the first place I never tell anyone about it so I don’t have to worry about any questions they might ask me.

    • catastraspie says:

      Thanks for your comment. That’s definitely one way to avoid stupid questions! :-) I think I’m hoping I can play a role in educating people by subverting the stereotypes, but it’s a slow process!

  12. Ben Edwards says:

    I could not stand it if anyone said any of this to me. I have had someone, a licensed therapist in fact, say No. #4 to me, for which reason I decided to stop seeing him. If I’ve learned anything from my life though it’s that after NTs do anything that offends or upsets us, they may often feel guilty afterwards and sometimes I really do believe in second chances. If I didn’t, I think I would find it hard to find dates or friends I could trust and love. Of course I do sometimes feel annoyed at them, and at that confused sometimes, but I know I can bring out the best in people when it comes to interacting with people with autism.

    • catastraspie says:

      Thank you for your comment :-) One therapist I saw right before seeking a diagnosis said I didn’t have Asperger’s, so I didn’t go back either! I wondered later whether I should have as it might have widened her understanding, but that wasn’t what I needed at the time. You are right that mostly people don’t intend to offend or upset, and that people should definitely be given the benefit of the doubt. It sounds like you have a great approach to dealing with difficult situations.

  13. Pingback: Friendship from the Aspie’s Viewpoint (Response Letter to Karen Willis’ Blog) | Timotheus "Pharaoh" Gordon

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