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Leigh Forbes has Asperger's syndrome.
As well as managing her autism, she is a single mother to three young children, and runs a web-development business. Sometimes she copes with it all at once. Sometimes not at all.
I have, seriously, been asked this question. We were talking about the 2010 film The Social Network, and commenting on facebook-founder Mark Zuckerberg’s various aspie-type traits. I’d mentioned how I’d been “just like him” when I was younger (only without the genius), and that’s when my friend said, “So, did you grow out of it?”
At the time, I just muttered, “no.” I didn’t know what else to say; when faced with such ignorance (however well-meaning), I was speechless.
So, here are some answers (those I give, and those I wish I could give) to the responses I get to saying I have Asperger’s:
You? YOU have Asperger’s?
Yep.
Are you sure?
Yep.
But… have you actually been diagnosed? By a proper doctor?
Yep. This one.
Don’t you think you should get a second opinion?
Nope.
Oh, you mean Ass Burgers. Ha ha ha!
Har har har.
But only boys get Asperger’s syndrome…
Now you’re going to tell me all about someone you know whose son who has Asperger’s syndrome.
But you’re not actually autistic…
Let me guess. You’ve seen Rain Man.
Well, it is a spectrum…
I know. You’ve seen Rain Man.
You obviously don’t have it very badly…
You wouldn’t last five minutes inside my head.
You must be very high functioning…
Yes, I can talk.
But you seem so normal…
Yep. Should have been an actor.
So, did you grow out of it?
Nope.
It’s only a label…
It’s better than all the other labels I’ve been plastered with all my life.
You’re still you…
No I’m not; I no longer carry the weight of failure everywhere I go.
It doesn’t need to change anything…
Oh yes it does.
You’re not actually ill though.
Do you need me to be?
Okay, so you have a disability, but you’re not actually disabled by it, are you?
How long have you got?
It won’t affect you long term though…
Hahahahahaha!
I know people mean well, but seriously. Why do they feel the need to try and make it better, usually by questioning the validity of my diagnosis and telling me everything they know about autism? You’d never say, “Oh, you have cancer? Are you sure you saw a proper doctor?” And go on to explain all about your aunt’s colostomy and her resulting irrigation-problems. Would you?
It would be much nicer if people would give credence to what I’d just told them, and resisted the urge to tell me all about the nephew of a friend who has Asperger’s (and how he freaks out at fireworks and likes to line up his toys), and everything else they’ve ever seen on the news or read in the paper. And then not tell me how unlike that I am.
Praise me for coping so well if you like and, if you really want to have a conversation about it, please don’t tell me what it’s like to have autism. Try asking me instead.
Hi, I’m 34 and I think I might have AS. My 10 yr old son was diagnosed with it a few years back and the more my husband and I learn about it the more we both agree that I fits me completely. It’s really strange to find out other people say what is almost your story about growing up. It’s so hard to deal with all kinds of questions while we are still learning about it. Is there a place for adults to be diagnosed? I live in Georgia, USA. When people make jokes I just ask my husband about it later. Unless I say something that everyone just stops, looks at me and then just busts out laughing, then they will ask did you not get it? (egg on face). I have learned to cope by imitating everyone on different things. My husband helps me. I have to always ask him about other people when they are angry or not. I know he gets tired of me asking him if he was angry, happy, upset, sick. I have just gotten to where I just wait and watch. I feel stupid. I’ve been labled with all kinds of things that my husband and I think are stupid and incorrect. This, this we agree on. So having to teach a child how to cope is extremely difficult for me but I just examples that I find helpful for myself and he seems to get it. Is there any other advice? Thanks again for the information.
Hi Jodie,
No.1 Don’t feel stupid. You are surviving in a world which is organised for a different kind of person (i.e. neurotypicals). The fact that you cope at all does you enormous credit. And the fact that you think to ask about how other people are feeling shows that you care, even if you can’t work it out for yourself.
I’m glad you find the information here helpful. Regarding your point about trying to help your son – this is something I can relate to. My 10yo son is also aspie, and I remember his old school telling me that I was the best person to help him. I thought they were completely missing the point. Or rather, they didn’t want to be bothered with the issue. I felt like the blind leading the blind. However, as you understand more about your own issues, and learn strategies to cope with them, you will come to find it easier to help your son too. I promise.
Hello,
I’m 18 years old and still in high school. All my life I’ve suspected that something was wrong with me. I was never like all of the other children/teens at school. All my life I’ve tried so hard to act like I understood my dads sarcasm, or not freak out when all of my food touched on my plate. . . And when I heard of Asperger’s almost two years ago, something finally clicked in my head. I felt like I could actually relate to someone, like I wasn’t alone anymore. I haven’t been diagnosed yet, you know, by a doctor. . . But deep down, I know. Right now, I’m just trying to get my parents to understand. . .
Hi Tiffany, I can really relate to what you say about knowing something was wrong, and being unlike the other kids at school (I felt the same!), but I encourage you to think of it as something being “different” rather than something being “wrong”! There is nothing wrong with you; you are not flawed or faulty, you are just different. People don’t always like difference, because they find “normal” more familiar, or less threatening, but that needn’t be your problem, nor your burden. I hope your parents are able to understand. Good luck, and remember there’s always support and understanding here.
I am young teenager, i think i may have aspergers, there are a few reasions why i dont want to be tested…
1) i am afraid of what people will think about me espessily if i do not have aspergers, thos would in some strang way make me feel guilty that i even compared myself to people like this
2) i dont know how to tell my mum without getting the respose ‘wise up’
Also i have been dignosed with dislexia so i do not know if that is what is giving me the symtoms
thanls,
Dan
I kind of have the same problem as Dan. Im also a young teenager ,13 to be precise, ive done my research and think I may have aspergers since a lot of the symptoms and things match up but
1-im afraid of even going up to my mum and saying I think I might have aspergers because she wont believe me and think im making it up
2-If I go to the doctors my mum will tell everyone that im going and why im going, I know this since my sister has dyslexia and when she asked my mum not to tell anyone that they went to check if she had it, my mum told my whole family
3-People wont believe me and think im attention seejing
4-Im afraid the doctor will just say im unsociable and my mum and everyone will judge me for going
5-I dont even know how to begin to bring up the topic
Hi Amal,
I understand your fears about talking to your mum: I was also afraid people thought I was making it up, and I also thought people would think I was just attention-seeking. And I was 38!
It sounds like you’ve done a lot of reading about Asperger’s. Before you speak to anyone, write down on a piece of paper the aspie characteristics you feel match best with you, and why. If you still don’t want to speak to your mum, you could talk to the SENCO (Special Educational Needs Co-ordinator) at school, or another relative, or family friend. Their first question will be “Why do you think you have Asperger’s syndrome?” And that’s when you get out your piece of paper.
If you want to pursue a diagnosis, take a look at this page I wrote about going to the doctor: (opens in new page).
Worrying what people will think of you is completely natural – most people worry about this (I know I do) – but try to have confidence in yourself and who you are. And don’t be ashamed of who you are, just understand that not everyone will accept you. Not everyone will understand. But others will. You can’t please everyone!
Hi Dan,
Are there reasons why you do want to be tested? Or are you completely against the idea?
I clearly remember feeling the same as you – that I wasn’t worthy to compare myself with people with Asperger’s – but you have every right to compare yourself! The doctors have a metaphorical line: if you’re aspie enough for them, you get a diagnosis. If you’re not aspie enough for them you don’t. But within the autism community, it doesn’t work like that. If you recognise aspie characteristics within yourself, there are many ways of coping that will help you, and there are many people who will support you. The autism community doesn’t need you to have a diagnosis to accept you as an aspie. We believe you are the best judge of who you are.
If you’re unhappy mention this to your mum, you could talk to the Special Educational Needs Co-ordinator (SENCO) at school. If you don’t know who the SENCO is, you could ask in the school office, and ask if you could make an appointment to see her. If you don’t want to do that, you could talk to any teacher. Is there a teacher you get on well with?
If you don’t want to do that, is there another relative you could talk to, or a family friend?
This article is so me…
A bit late to the party, but love your post!
It’s all so very true! The curse of Aspergers is that you often appear “normal,” so people will question the fact that you have Aspergers. I’m sorry that I don’t spend my day rocking back and forth in my room. Not everyone does that. I also can’t count cards and win at the casino. Sorry, no Rainman here. But I can talk and write and get married and raise a family like most people. But you also don’t see my struggles, or understand what’s going on inside me. You see, I’ve also learned to hide my Aspergers because of rude idiots I’ve encountered.
You are so right about, “You wouldn’t last five minutes inside my head.” No they wouldn’t. And they would beg to get out and back to their cozy little lives.
Oh..this post came at such a perfect time. I am having the same issue for my daughter at school right now…even though she has a diagnosis-apparently-she’s just extremely shy…*sigh* Sorry you are hearing these things..:(
Love your post! Direct, honest, ironic and funny. Props to you! ;)
“So, did you grow out of it?”
People are so bloody rude!!!!
“It’s only a label…
It’s better than all the other labels I’ve been plastered with all my life.”
I don’t even get why someone would say that. Are they trying to make you feel better about ‘the label’? If so… well if you have told someone, surely it’s because you’re OK with wearing that label?
“You’re still you…
No I’m not; I no longer carry the weight of failure everywhere I go.”
Oh Leigh. That makes me want to cry, that you carried that for so long.
“It doesn’t need to change anything…
Oh yes it does.
You’re not actually ill though.
Do you need me to be?
It won’t affect you long term though…
Hahahahahaha!”
PEOPLE ARE RUDE! In what world would it be appropriate to say these things?
“You’d never say, “Oh, you have cancer? Are you sure you saw a proper doctor?” And go on to explain all about your aunt’s colostomy and her resulting irrigation-problems. Would you?”
I suspect people who had cancer would have similar stories… although maybe not the ‘proper doctor’ part. They just get the ‘oh well if you just eat three tons of carrots a day it’ll go away’ stuff. Of course that doesn’t make what people say to you any better :(
These last two just leave my jaw on the floor. People are not only rude but stupid :(
“Okay, so you have a disability, but you’re not actually disabled by it, are you?
[haven't thought up an answer yet!]
Another another one!
But you’re married…”
People are rude! But mostly they are ignorant and careless with their comments, and inexperienced in dealing with anything different, which is why (I reckon) they want to make it okay. Most people (admittedly, not all) stop and think when encouraged to.
Great post; I hope others read. Im still encountering problems with some members of my wider family accepting my daughter’s aspergers. Because she talks, walks etc they just can’t seem to accept that she has difficulties.
I sympathise. My own family was very slow to accept my diagnosis (one of those comments above came from my dad). It’s hard.
Oh wow, so we all get it, right?
Imagine being diagnosed “Pervasive Development Disorder -not over-specified”…
My dad and step-mum have a fit every time I mention “autism” (and my dad is waiting for the day a psy will tell him I’m cured…), most family and friends of family think I should “make an effort”, and my psychiatrist recently told me that once adult, that diagnosis didn’t exist any more because it crystallises into various fears etc. – unlike asperger’s or autism which are “set” diagnosis (even if you can evolve within them).
I’ve created my own business, lives alone -until we move in together with my partner-, went to uni… but that’s only the surface. I agree on the “actor” part… Most outsiders, including doctors, never saw a thing and still don’t, I got diagnosed aged 22.
Yes, we all get it. Sadly. There seem to be all sorts of reasons why it can’t be right. I feel sad that people don’t ask. I’m glad you got your diagnosis, at least, and that you family will accept it in time. I hope it helps, in a way, to know there are so many of us in the same situation.
Glad you like it!
This should be compulsory reading for all my friends!
Brilliant, I’m stealing this !!
Thank you, Kath :o)
(Weren’t you a witness to the “So did you grow out of it” comment?)
You’re just you and fab as you are.
It is interesting how you learned of your own diagnosis after knowing so much about Aspergers already, whereas most folks have to mad scramble after the fact. And while you may not be “just like everyone else”, you get to “have” and “live” the wonderful things. (maybe that sentence made sense?) Thanks for sharing!