This is tailored to adults who were diagnosed with Aspergers, but the list can apply to many ages and many conditions other than Aspergers Syndrome.
20 Things Not to Say to a Person on the Autism Spectrum
1. Everyone feels like that sometimes.
2. Everything happens for a reason.
3. You’re fine. They have too many labels nowadays.
4. That reminds me of me. I wonder if I have that too.
5. Things could always be worse.
6. At least you don’t have autism.
7. Don’t worry. Be happy. Think Positive.
8. That’s no big deal.
9. You’re too serious. Get out of your head and help others.
10. Everyone has problems. Stop analyzing yours.
11. I never would have guessed. You seem so normal.
12. Are you sure? Maybe you need a second opinion.
13. Why do you think that?
14. That’s weird. Good luck.
15. Aren’t you glad you found out?
16. That’s so trendy. Everyone thinks they have that.
17. Did you get an “official” diagnosis?
18. I’m uncomfortable with people classifying themselves by a diagnosis.
19. My cousin’s neighbor has Aspergers.
20. Well, now that you know, stop focusing on it, and get on with your life.
15 Beneficial Approaches
1. Offer a warm smile and nod. Listen and comprehend.
2. I’m on your side. I’m here for you. You are not alone. I am here to stay.
3. Where can I find more information?
4. You are a strong person. I love you for being you.
5. Make a friendly call or send a friendly text or email.
6. What can I do? Tell me specifically. I want to help anyway I can.
7. Ask the person on a long walk, a picnic, or other excursion.
8. Hold a space for processing what that means to the person.
9. Do you need my support? How can I support you specifically?
10. Go to a matinee or rent a movie about autism or Aspergers.
11. Sincerely compliment the person.
12. Validate. This is a big deal!
13. Read personal accounts about living on the autism spectrum.
14. Thank you for confiding in me and trusting me. I am honored to know you.
15. If you are comfortable, can you tell me more about your experience?
© Everyday Aspergers, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. https://aspergersgirls.wordpress.com Original title was 20 Things Not To Say to A Person with Aspergers.
Sam’s new book can be found at myspectrumsuite.com and on Amazon internationally.
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Everyday Asperger's 
Another comment NOT to make, especially if the Aspie has “Cool-Morbid” conditions and, honestly, Who Doesn’t? Don’t tell them that they are going to DIE since the Day they were BORN….doesn’t seem to help.
Goofy! But true. 🙂
This is wonderful! Thank you for posting it. You’re right, it does apply to a number of conditions. I love the suggestions!!! I’ve been on the receiving end of some unhelpful things said, and I really wish to say the helpful things to others. I have fibromyalgia and am recovering from breast cancer, and the right words at the right time go a long ways towards making a person feel cared about!
You are welcome. I know the challenges of fibromyalgia. I am sorry for your struggles; I am pleased to hear you are recovering. The right words make a world of difference, don’t they. Thank you for commenting. Much love, Sam 🙂
I haaaate #16. That’s the response I get when I mention my husband has Aspergers. Not only is it completely rude and ridiculous, it’s also them just repeating the ignorance they’ve heard because they don’t know what else to say.
I know. Right? The things that people say. Of course, I’m sure I’ve said a few in my life. Live and learn. 🙂
Way to go, Sam! People need to know these things. I learned a lot of them by trial and error; students in my classes and in the school who had problems of some sort. Aspergers is not the only disability that these suggestions would help. In fact, the suggestions you made (well, most of them, anyway) would help people who are merely alive. We could all use validation and nice comments and company, instead of downplaying the situation, ignoring the problem, or insulting our intelligence. Thanks, again.
Scott
Oh! I hadn’t thought of that. You are so spot on. Yes, people who are merely alive. Right on. You summarized this well. Your students were blessed to have you. Thank you. Have to get to your blog soon. Took a few days off, because of health stress. Hugs. Sam 😉
Thank you Sam.
You are very welcome, Liane. 🙂
Thanks for your post! I shared it on FB. The suggestions for benificial approaches made me cry… Almost nobody responds that way and that really makes me sad sometimes…
We are all still learning how to respond to things we don’t understand. I am sorry that you have not received beneficial support from others. I know the sadness. Big hugs to you! I appreciate your honesty. Sam
“16. That’s so trendy. Everyone thinks they have that.” OMG !!!!!!!!!!!!!!!!
TALK ABOUT HAVING BAD MANNERS ……..
OR JUST NO WAY OF COMMUNICATING WITH EMPATHY ……..
!!!!!!!!!!
I LIKE THIS ONE ….
“14. Thank you for confiding in me and trusting me. I am honored to know you.”
NOW THAT IS A KIND HUMAN RESPONSE ….
XOXO
CAT
People have actually said the trendy comment to me. Silly. I like #14, too. You are right on, as it being a human response. 🙂 Thanks, Sam
HONEY ……..
SERIOUSLY !!!!!!!!!!!!!!
C’MON PEOPLE …….
WAKE UP …..
EVERYONE IS UNIQUE ……..
KINDNESS IS SO DANGGGGGGGGGG SIMPLE .
BE RESPECTFUL – HAVE GOOD MANNERS AND HONOUR EVERY LIVING BEING FOR WHOIM THEY ARE —- IN HEART XO
CAT XX
If they’d made the “that’s so trendy” comment t me, I would have snorted and rolled my eyes and said “I was OFFICIALLY DIAGNOSED with Asperger’s LONG before it was considered trendy.”
🙂 Thanks for sharing.
PEOPLE ARE PEOPLE ———
ALWAYS WATCHING FOR TRENDS AND THEN ULTIMATELY – NOT UNDERSTANDING –
WILL TRY TO PUT A SPIN ON IT ………
PEOPLE IN THE MEDIA ALWAYS SEEM TO DO THAT ….
Sam! You are awesome! Yet some other wonderful lists! 🙂 These three:
11. Sincerely compliment the person.
12. Validate. This is a big deal!
13. Read personal accounts about living with Aspergers.
Oh, boy! I am hugging your words right now. And the first 20 you have listed — OMG! Yes, I never know how to respond when those things are said to me. The one that really throws me is when someone says :”Well we all have a little bit of Asperger’s don’t we?” In a kind of condescending, or matter-of-fact way.
I want to yell at them “NO! Freak!” I know I shouldn’t call people freak, but that is the nicest word that comes to mind. Lol! Lots of shiny bubble hugs to you!!
Yes, and we all have a little bit of __________ (insert any condition/syndrome/traits). What a goober-filled comment for people to make. That would be a good title for a post: No! Freak! LOL Lots of bubbles back and thanks for the sweet words. Now stop stressing over your spelling/words/missing words. You have enough to think about. 🙂 Sam
Hehehe ” freak” that’s great! You SHOULD totally start doing that Angel!
Great list Sam I got 11th and 19th of what not to say a lot…
oh really but your daughter looks so normal..then there was this one neighbour everyday first thing in the morning she would ask me did you daughter start talking..then one day i told her whenever she does you will be notified first till then dont ask…
I am glad you made this list…
hey btw have to share with you this totally original one of its kind quiery i got once-
“isn’t asperger a vegetable used in salad”
(she meant asparagus) 😯
Oh my goodness about that neighbor. People really don’t understand, sometimes, do they? “Isn’t asperger a vegetable…” LOL! Thanks Soma. Glad your daughter has you! You get it. Hugs.
We get the “but she looks so normal” response a lot, in regards to our daughter. As if when you’re diagnosed, the word autism magically appears across your forehead or something. Talking to my cousin, who was recently diagnosed with Aspergers, it’s amazing how close we’ve become just by sharing so many of the same traits. Neither of us “look” Aspie, but that’s the great things about us Aspies, he gets to have his traits and I get to have mine and we get to compare notes LOL
I have it branded on my face; don’t you? lol That’s so awesome you can compare notes with your cousin. There are pros and cons to having an invisible “condition.” Thanks for the comment. 😉 Sam
The response I always get, along those same lines, is, “But you don’t LOOK autistic”. When I hear that, part of me wants to-and sometimes, I honestly do-say, “Well, looks can be deceiving. For example, you don’t LOOK stupid”.
Almost everyone I’ve told I have Asperger’s has said “Really? You seem so normal. How do you know? Who diagnosed you?”
I expect it’s the negative connotation people associate with Asperger’s. But I’m stewing on a post myself, about how Asperger’s might be a genetic mutation that is reinforced for the GOOD of our species!
Yep. But not with other syndromes. No one said that to me about depression or fibromyalgia. I have a few theories on Aspergers myself…especially after hearing the deep thoughts and profound wisdom my middle son says. 🙂 Hugs, Sam 🙂
I love you and I love your lists.
Can I add my three favourites, that have all pushed me to meltdown.
1. “Lisa, get your nose out of the psychology book and into theology books, we are all a little bit autistic!”
2. “I know you are not coping with the change, that is because you have aspergers and I have taken you out of your comfort zone. You will adapt, you just need to stick at it!”
3. “Yes..you have a lot of Aspie traits but you are clever enough not to be Aspie!”
Does anyone else want to scream with me about these…Arrrrrrrgh…..LOL
I am so going to share this post.
Love you loads.
Lees. xxx 🙂
Arrrrrrrrgh! Screaming with you, my friend! Thank you for sharing. xoxox 😉
Oh I love you lees x
🙂 I love you too my precious friend. x
xoxox
Hang on clever enough not to be an aspie? That is absurd intelligence is an excellent aspie trait!
One day I’m gonna ask them “Please tell me what _____ looks like! I’m dying to know.” That would be rude and I can’t bring myself to be rude to people (most of the time).
That would be a fun post—-all the things I wished I could say. lol. I try not to be rude, myself, but sometimes I play it out in my mind. 🙂
Sam….Brilliant!!!!! Loved every word of this post and the what to do list at the end was fabulous .
I’m speaking as an NT but even as the mother of 2 kiddos on the spectrum I HATE it when these things are said or inferred.
Oh yeah….sorry to clutter up your comments…but whenever people tell me that my boys don’t look like they have autism….I tell them that their kids don’t look “normal” either….totally shuts them up!!!
lol 🙂 You’ve got spunk!
LOVE this …
Hi,
Was passing by and loved this one!
Thanks
Shakti
Thanks for passing through. 🙂 And for the comment. Take Care. ~ Sam
Yay! I am so sharing this!
Forgive me while I get caught up on my comments, too! I am so happy to have you as a buddy! 🙂
Lori
Glad you like this one. Hugs Bud! 🙂 Sam
This is absolutely a “must share” and thank you very much for this post, Sam 🙂 🙂 I’d love to share it with everybody out there…very nice of you to write something very important and true information regarding Asperger’s…an FYI to those who know very little or nothing about Asperger’s…love the side note…love the MJ song 🙂 🙂 BRILLIANT!!!! always nice to know i’m not alone…thanks for the friendship, Sam 🙂 🙂 {{{{HUGSSSS}}}}
Super. Glad it was helpful. Hugs to you. 🙂 Sam
I have a 14 year old son with Asperger’s, and one thing I really get sick of, is when people tell me I make allowances for him because of it. I find they are ignorant people and they should read up on Asperger’s to know how to deal with a person with it. I do not make allowances for him, as I think that he will be living in the real world of adults one day, and no one will make allowances for him out there, so why would I confuse him more and let him think that everyone will make allowances for him, when in reality………they won’t. I just live with it, deal with it, and get by with it. It is difficult living with a Asperger’s child, but they have a wonderful heart of gold, and I wouldn’t change that for the world. I love you my son. xxx
Yes. Wonderful hearts of gold. My 14 year old son with Aspergers is a beautiful soul full of much wisdom. Thank you for reading and your comment. Sam
You are such a supportive mom….awesome..I was on a dating site and I came up with the idea of telling anyone that seemed interested to read up on “women with Aspergers” if they were still interested after their research go ahead and contact me…..I am tired of dealing with the Ignorance and the tiresome explanations when I do something someone considers “off”.
And I must agree that we are difficult humans to live with because of our ways of thinking.
take care!
Becca
Just now seeing this comment. Thank you for sharing. Hope the dating site has worked well for you. 🙂
I think most of the people are ignorant about Aspergers,when they come to know about someone they just don’t know how to react ,they may not meant to hurt but actually hurt with their unawareness. Loved every word of your post..
Yes… hurt with unawareness. I think most people don’t mean to hurt… at least I hope so 🙂
I think you are right, they just don’t know how to react.
In my country, the most annoying thing people tell me when I tell them I have aspergers, is “did you know that guy who killed [a very famous national politician] has that too?…” Thank you very much for comparing me to a complete nut job….that’s not hurtful at all! (insert sarcasm mark here)….
Oh, sorry to hear that. Yes, that would be bothersome! ~ Sam
I’vue been reading Eat Love Pray–sobbing and laughing for a week — I’m about to be diagnosed. I’ve had to educate my shrink———–he fhought all Aspies were like Rainman–most don’t have a clue about the activity all over the brain, all the time, in AS females. We’re rare., 1 out of 4.6%. Anyone see TEMPLE GRANDON, the movie? I hate this computer, it’s like a demon child, jumping all over the paragraphs, spitting out letters up, down, left right, everywhere, scattered randomly like grains in a keyboard’s sandstorm …. at least it’s not BASEBALL sized hail, happening today in a stormy midwest… tornado …We are so lucky in the Hawaiian islands 4–28-12 . I’m grieving for not just people, but all wild things and domestic pets–ALL LIFE in the midwest…sister moon child of right brain relaxation dominance…–.
PS Afraid of caving to Dr’s insistance to start on anti-depressants…Afraid it will kill my art spirit that paints incredibly for me..meanwhile I watch, as observer. Anxiety about it ,(#1), and (#2), am off the meloncholy …after a miracle–this week, it’s was the first, over the top squirting eyes, Niagra response, dealing with lucid dreams about my son, as a bewildered child and slight delay in the loss of Aaron–my only child, who passed in 1987. Any suggestions? So happy to find this site. I hope. Sismoonchild
As far as ante-depressants go, if it were me, I would seek out a doctor that I highly value the opinion of, and do some research on types of anti-deppressants. I’m so sorry for your loss. Losing a child is the hardest experience of a parent. I hope my blog helps you in someway. Much love to you, Sam
Loved Eat Love Pray–read the book and saw the movie three times.
Rainman? Wow, he is really unexposed to Aspergers!
Temple Grandin has autism. There is a difference, but there are similarities.
Yes, visually, computers can be hard on the senses.
We are going to Maui in 10 days. 🙂
Sorry for your sadness over the people in the midwest—
🙂 Thank you for commenting and for sharing some of you. Hope all goes well. Sam 🙂
just wanted to say that i liked this. and that the image used to illustrate is not a wolf, but a siberian huskie – wolves do not have, in fact cannot have eyes of different color.
Oh, cool. I didn’t know that. 🙂 Thanks for the comment and for letting us know.
now, my wife, says it is most definitely an arctic fox… (probably farmed for its fur, as those foxes get all kinds of genetic defects, such as different colored eyes – something that does not occur in the wild) in which case i was wrong, and need to apologize. what we are both certain of is that it is not a wolf,
Okay. Thanks. It’s a lovely creature. 🙂 Sam
yes:)
Hey Sam… I can relate to this post, even not having Asbergers, but as one with chronic debilitating conditions. I can tweak your words just a tad and have a perfect one of my own to hand out to friends and family!!! Thank you for composing such an important post~ Sending hugs ~RL
I have chronic health conditions….actually trying to take out “chronic” to prepare for a better mind set of future healing…I hear you LOUD and clear! So glad you can relate. Appreciate your words. 🙂 Sam
And a actually — many of your listed points I would not have to change at all!! 😉
🙂 love to you 🙂
As someone who finally in my 30’s seems to of pin-pointed my social difficulty as Aspergers (still need an official diagnosis but I hit 95%+ of the symptoms, and I had a gift in college made other students envious/jealous/appreciative I would always try to help)
I would say going through life with people always asking the person next to me “why is HE so quiet” like im not directly in front of them, spending every day wondering if I was born with “whatever” it is or if “nurture” was the cause. This is pure hell.
If you think someone has any condition you should talk to them privately (pride is important) and explain that there is hope for a happy life, and that they dont have to do it alone. There is therapy available that can help teach how to socialize.
Good point. Talk to the person in private. 🙂 Thanks for sharing. Yes, there are therapies available. Thank you for stopping by and commenting. Sam
I have heard some of it. My parents used to tell me I could have had something worse like be crippled or be like my old friend who has Down’s syndrome. They don’t see my AS as a big deal despite the stress I had put them through. I have been told I am lucky I found out sooner or that I am diagnosed. I have also gotten “you seem normal” from random people online and in real life. I have always taken that as a compliment TBH because as a child I was called retarded by kids and made fun of for it so normal was finally the right word than being accused of having mental retardation. At least if they think I am normal, they will treat me with respect.
Oh yeah being told you are mild just because you are talking well to them. I say “Put more people in our conversation and then I would have difficulty.” I am mild of course but to assume someone is mild based on how much they talk is absurd because I have noticed that people with AS either talk and not shut up or hardly ever talk and don’t get a word out.
I would also add “You don’t seem that autistic.” What is that supposed to mean?
I am sorry for your pain and anything from your past that hurt you. Life can be hard, especially with a special need or challenge such as ASD. I appreciate you sharing your story and what happened to you. “You don’t seem autistic….” sigh…yes, I have heard people say those words about others. Sad, indeed. I hope now you have more support and the understanding of people who love you. Blessings and light to you. 🙂 Sam
i disagree with a few of them….
“That reminds me of me. I wonder if I have that too.”
Why is it wrong for another person to think they are aspergers/autistic as well? A few people have thanked me because we’ve got out an autism alert card and both decided they are likely to be autistic as well as me. That has helped them.
“Why do you think that?”
Educating others can be done by answering this question.
“Aren’t you glad you found out?”
Thats the other person indicating what a relief it is to know you’re autistic/asperger.
“My cousin’s neighbour has Aspergers.”
i would find that sort of conversation interesting in fact my immediate reaction was ‘let me meet them!’ My longest friendship was because i told some friends i am Aspergers and another guy told me he is too.
i do agree with the other ones in fact they annoy me the number of times i get told them.
Good points. I think it depends on the situation, the tone and intention. 🙂
Thanks for your reply, unfortunately yes it does depend on the situation and tone.
I got some anti autism stuff thrown at me because I keep talking about my problems. He also told me that I talk about my autism more than anything else. I kept getting rejected by my actions, i tend to remind people im autistic when they say something that is against autism.
When I told him he was “ignorant about autism” he told me to “piss off” because he took it that i meant he’s ignorant in general.
Tempted to print out the autism alert card and this blog and give it to him at the next meeting (it’s for a different disability to me).
I feel your annoyance. I never had any luck with this kind of thing,
either. So relieved to find out I am not by myself!
Thank you for the comment. Nope, you are not alone. 🙂 Sam
I love this post. Thank you so very much.
You are most welcome 🙂
Hello Asperger’s Girls,
I just had something similar to Number 16 however in the form of Everybody has some form of Asperger’s Syndrome. Grrrr
Can I please use the link to this thread to post back to them? I read somewhere about having to seek your permission before using any materials from your site.
Kind Regards
Lionelgee
links are fine :))) just not copy and pasting. Feel free to link back, and thank you for your comment and for asking. Best wishes.
I love this- so true! Thanks for posting 🙂
You are welome. 🙂
Excellent list! I’ve heard many of those….. from many people the ‘but you’re so NORMAL!’ Actually, I’ve learned to PRETEND to be normal, mimicking others so well, that I can keep up the charade for a few hours at a time. But sooner or later I’ll say something totally ‘off’ or ‘rude’ to somebody, and get those glares from my husband or daughters. Which is why I have stopped going to parties with them.
But after being finally diagnosed at the age of 50, after struggling with suicidal thoughts from the age of eight, and literally almost being bullied to death in school and some work places, then to hear from my MINISTER at church of all people, “Well, now that you know, stop focusing on it, and get on with your life.”…… I was SO mad at him for saying that, and I told him so.
I will be 60 next month, but my husband has still not given up on changing me to be more ‘normal’, more like him.
Well, I don’t want to be like him! He is one of those fanatical Christians, who is one of the most judgmental people I know. He is probably more self-righteous than the Pharisees, too.
I have managed to raise five kids…… looking back I wonder how I ever managed to do that and survive. I love them and our 17 grandchildren dearly, but have to make myself visit, and allowing them to visit. But the hardest thing is, that my husband has started his own home-based business several years ago, so he is there almost all the time. He is a control freak, and wants to control my every step.
I hate the phone, and prefer to communicate online……. but he regularly says, “Don’t you think it would be a good idea for you to put a limit of, let’s say, one hour a day, on your Internet time?” Ummmmm, no, it wouldn’t be. The Internet is where I do all my research on the subjects I am most interested in right now (my current obsessions), and I’d feel completely lost if suddenly I couldn’t do that.
Now, if I travel, not having a computer doesn’t really bother me at all. But when it is available I see absolutely no good reason to limit my own access. Especially not on the ‘advice’ of a man who is mostly computer illiterate, and only views the computer as a tool for his work, and nothing more.
Okay, here I go on one of my rants…… oh well, I am sure you understand.
I have asked to join your facebook group….. I don’t want to say what my facebook name is here, for obvious reasons. But the first name will be the same. My picture is me, almost sixty, auburn hair, holding a grandchild. Please add me! I could use some support.
Nice to meet you. I shall see you in group. 🙂
That, and “God never gives you more than you can handle.” or “He chose you to be special.” And I HATE the phone too.
oh, yes…nothing like those. 🙂 thanks for sharing.
I’ve dealt with #11. It also has another ending, “You seem so smart.” People don’t seem to understand the difference between intellect and emotional processing. Glad I found your blog.
🙂 Yes…that sounds familiar 🙂
Subsequently after looking at a number of the blog posts on your page (for almost 2),
hours I seriously like your approach to blogging.
I added it as a favorite it to my bookmark website list and will be checking back in the near future.
Be sure to visit my web site too and tell me how you feel.
The Worst one that I got is
1.stop asking me to feel sorry for you.
2.Stop taking things so literally.
I never asked you to be sorry for me. Isn’t that why us aspies don’t understand jokes (because we take things literally)
🙂
When you say ‘validate’ what do you mean? Like, they say, “I have Asperger’s” and you say, “aww, well that sucks,” or… or what? I don’t get it! BTW, this was very helpful, thank you so much! Now I know what to say… without being an unintentional idiot.
validate: I hear you. I see you. I believe you. :)))
Now that is just WEIRD! As I was reading this I was listening to “You are not alone” by Michael Jackson! It came on right before I read that part that said “You are not alone, I am here to stay”. Maybe it is a sign.
🙂 I love things like that 🙂
Even if AS was “trendy,” it wouldn’t necessarily be a good trend.
interesting thought. I tend not to see things in ‘good’ and ‘bad’ terms.
Wish we could sing hip hip hooray and you could blowout candles on a really yummy choc cake! Great list 🙂
Awe….great image. Thanks so much. Brought a smile to my face.
Hi my name is nannette and I have just read through yours lister and found that I have had a lot of these comments thrown at me, which doesn’t help when I’m struggling with depression and anxiety as well. I’m 41 and I only found out last year, though still waiting for an official diagnosis, I’m on a waiting list which seems to be getting longer (18 months, so far!!).
Would it be ok if I share these lists with my friends and family?? As I feel it would help them understand things, I’m not very good at putting my thoughts into words and to explain things. It would be great if you would say yes, as I feel a lot of my dress is to do with making people understand .
Thank you
I also belong to a few asperger fb sites which gives me a lot of support
I wish you the best. The first phase of finding out was the hardest for me. Lots of mixed emotions. Yes, feel free to print the 20 things not to say out for friends and family. I just ask that you don’t share it in a professional manner (outside family) without my blogsite information on the list and permission. I hope this helps in someway. take care And thanks so much for taking the time to share.
I am a 33 year old woman diagnosed with aspergers two years ago. I am feeling very disheartened because several of my family members are less than accepting of my diagnosis. And yes, they even used #16 when I was trying to explain to them how it affects me. My sister-in-law told my brother that I was full of BS, and obviously seeking attention or pity. I feel as though I constantly have to defend my diagnosis, and I wonder if a second diagnosis would make them accept me for who I am, a woman with aspergers. Lots of people on the aspergers forum I talk to said I shouldn’t worry about convincing them, but I love them, and I want to have a closer connection with them and I believe that this can’t occur unless they accept my diagnosis. I don’t want to isolate myself, and play pretend with my family as to who I am and how I act. All my life I have hidden my quirks and my behaviors in order to blend in with the people around me, and it is extremely tiring and I am tired of putting on a show. All the acting and mimicking did for me was make me depressed and lonely. I would like to pull the mask off completely one day. I have covered up my natural self, and am now peeling away all the years of trying to be “normal” to the point that these unnatural behaviors have become habit… it is very confusing for me, and it doesn’t help when I know that my family thinks I am putting on a show when I let my true self emerge… they don’t understand that the real show was all those years I pretended to be like them. Recently I met and fell in love with a man that also has aspergers, and I’ve never felt so comfortable around anyone in my life! I am hoping that by spending time with him I will be able to explore who I really am behind the mask. Do you have any advice on dealing with family that adamantly reject your diagnosis?
I steer away from advice giving, though I clearly see how loving you are and how painful this is. I would seek first to love and accept yourself, through whatever means work for you, and then their opinions of you will not affect you as much. I think having a support system is extremely important, a place where you are honored for your authentic being. I can’t imagine what a painful place you are in. Please feel free to friend me, under author contact info on left margin, and the like-page link is another place for community (left hand column). Take care of you. When you trust and love yourself, the other pieces will come into place. hugs.
Thank you, your kind words are encouraging. What people without aspergers don’t seem to understand is how much suffering and pain this disorder causes us. Getting my official diagnosis was a major turning point in my life in which I finally understood why I have felt so lonely all my life. Meeting and talking to other people on the spectrum has helped me to feel connected to other people for once in my life.
also you can search for the support group, Everyday Aspergers, on facebook. I am no longer a part of it, but might be worth it to check it out. 🙂
Also, what Katie is saying about people not knowing how hard living with AS is so true. They can’t “see” the fact, for example, that I am sensory sensitive. Others can assume that because I have a normal I.Q. that I can control my reactions 100% of the time. I am glad I know where my true worth lies-in Jesus Christ.
I tend not to give advice on my blog, either or get into politics or divisive issues that sometimes divide the autism community. I think you gave Katie excellent advice. I am a 34 y.o. woman with AS. What I have learned is that God accepts me as I am. I do not need the approval of others (which was a revelation for me). He comes first. I also learned with certain family members that I needed to take a break from them (some for a few years). When I re-communicated with some of them, I learned that they were more accepting of me and I can have a very basic relationship with them. Others, not so much. I have learned to be so grateful for God and to those people who DO love and accept me.
1.) Yes I am sure. Pretty darn sure. 2.) Actually, according to the fact that in addition to my asperger’s, I was more severely autistic before that, being non verbal until age 4, yes, by diagnostic technicalities, I do have Autism, (the autistic disorder kind at a high functioning level) 3.) I was diagnosed at age 7, in 1999, before it would be thought of as “trendy”. And even after learning social tricks and a great deal of control, my online aspie score is still, 184/200, which according to most aspie scores I’ve read, is pretty high, even for an aspie. 4.) My co-morbid to asperger’s diagnosis were ADHD, (still not entirely certain that one is or isn’t correct), non verbal learning disorder, and obsessive compulsive disorder. I also had additional learning disorders during my school years. 5.) Yes I look normal. So do you. Here. Have an imaginary cupcake.
Thanks for this post. I have a new friend online who shared a few months ago that he was “borderline AS”. Recently he was kind enough as to explain some of the things he deals with that are probably related to that. Now that I have read this and another post, I am even more flattered that he felt comfortable enough to share that with me …
wonderful
Wow – this list is spot on! And heartbreaking at the same time.
I was officially diagnosed three years ago (I’m 52 now) and still struggle with coming to terms with it. Not the diagnosis – that was “OMG that explains SO much!” – but that my immediate family are the worst offenders. The sensory issues (I hear in color, see double out of one eye, food texture reactions, aversion to anything other than cotton touching my skin) and subsequent meltdowns were all things I was punished for. My father was an ordained minister and this was going to get him “thrown out of the Church.” Public humiliation was used as a behavior modification technique.
So you left one out. #21 – We’ll pray for Jesus to heal you.
oh, sigh. Yes, that would be hard. thank you for sharing.
Yes, I certainly get that, too. My husband will tell me that if I read the bible more, and pray more, God will heal me of the AS.
He doesn’t get that my whole personality is part of the AS (or is it the other way round?) and that I don’t need healing!
We def don’t need healing! I know just discussing my AS has helped me.
Maybe we are the healers!
A younger co-worker – who knows of my ASD and I suspect is on the spectrum himself – recently told me that “knowing you has taught me so much about myself.”
If we can help just one person to understand themselves, isn’t all the pain & crap worth it?
🙂 yes, my son has taught me so much 🙂
God doesn’t always heal us of everything. Paul talks about this in 2 Corinthians 12. God does give us grace to get through the hardships in life and always promises a way out 1 Corinthians 10:13. I went to church some and knew Christian people who were quite ignorant when it came to mental health and special needs. I hope this helps.
🙂
That’s I’ll need for some my friends… Thank you soooo much.
Hi Sam, one of my best friends (we’ve known each other for 25 years) commented on this post a couple of months ago when I told her I was almost certainly an Aspie and she said then: ‘Oh I’ve been saying all the wrong things.’ I thought she understood but then this weekend, in response to an email from me, she gave the following ‘advice’ which you could add to the other points above!!
‘I want you to look forward to the sort of life you want and live it” (I do and always have done despite myself!)
‘Don’t look back too much with regret. It is what it is.’ (Grrrr!)
‘There is a danger of too much internalising.’ (Umm you really don’t get it)
‘That isn’t meant to belittle what you are feeling it’s just you do tend to cut yourself off and the only thing you can then do is dwell.’ (So belittle what I am feeling OK? The ‘cutting off’ is almost involuntary and I need to do it. This is like saying I am my own worst enemy and if I tried I could be a sparkling social being all the time, so it’s my fault?)
I wrote back trying to explain, as I really love her, and felt a lot better but not heard back when I what I need is that phone call or text just saying ‘love yah x’
Now smiling as I guess, knowing her, she just could not resist giving advice!! x
yes, I can understand this! ufffff 🙂 seems you handled it well. thank you for sharing
I understand how you feel because my mom and husband deal with it the same way as your friend. I try very hard not to ever get offended with them and to even take their advise. When I’m overly worried or anxious about something, my mom will say not to worry so much or don’t over analyze things. So, when she says that, I just say Ok, I’ll try. I don’t want to bother her or to worry her in anyway, so I just try to talk about something else that I know she’s interested in. Sometimes, when it’s impossible, I just tell her I don’t feel well and I need to get off the phone and take care of my baby or do dishes or something. I hate bothering my family. I try to hide my special interests that include brain science, archaeology, history, theology and learning languages or I just talk about them if people are interested. Another thing that helps is I give a pause in the conversation for several seconds that I count in my head in order to give them a chance to answer and participate. That way I know I’m not just going on and on and driving them nuts! I hate boring people or driving them nuts. It’s very difficult having Asperger’s syndrome because family members have always told me, “You’re so book smart, but you don’t have street smarts and you lack wisdom”. I hate when they say that. I’ve been trying to learn more social skills though so I can be better equipped for the work place. I really would love to finish my bachelor’s degree and become a teacher when my daughter becomes a little bit older. I hope I haven’t gone on and on and bored you guys.
Oh my gosh Im sending this to my family.
I got another to add: ‘Aspergers! Aspergers!”
*eyetwitch* this is basically what my parents start calling out at me when they don’t like something I’m doing/saying. Seriously, today my mother’s talking to some teachers (and yes she’s CONSTANTLY talking about teaching. Everytime we go out atleast 15 minutes is spent with another teacher/parent/old student talking about teaching. And my mother doesn’t allow me to wander so I’ll run out of phone games and be stuck there bored, so I’ll sometimes interject in the convo.) Anyways, so Im stuck there with my parents in a booth with her talking to these other teachers that are standing at the end of the table. Guy teacher asks ‘What’s the difference between middle school lit and elementary?’ As a JOKE I quickly say ‘Higher reading level.’….and my mom gets all mad at me and once these ppl finally leave, she begins to lecture me that what I did was Aspergers and I shouldn’t say anything since I’ve never taught and blahblah blah! My dad even jumps in on me and says ‘yeah you had no right jumping in on the convo, you’re gonna have to watch that when you get a job.’ …..ppl it was a joke!!! Do I need a drumset here for a rimshot so you get it?! Its not Aspergers for me to make jokes!!!
Arg it just drives me crazy! Its like they’re new word to discipline me with or use to blame things THEY don’t like as being ‘socially unacceptable and needs to be changed’. I know they want to and try to be supportive but, ARG seriously! That just frustrates me more!!!
What not to say to a Neurotypical:
1) Anything at all because they are worthless.
Learn the truth about your “Aspergers” at Koanic Soul:
http://www.koanicsoul.com/blog/reading-faces-the-eyes-are-the-windows-to-the-soul/
Ugh! I can’t stand number 1. “Everybody feels that way sometimes.” Oh really? Please explain it to me then. Haha, so ignorant. Thanks so much for this forum, I feel better knowing I’m not the only one who “feels that way sometimes” (all the time!). I was diagnosed pretty late, and not even at all really. The specialist I saw I didn’t really like, therefore, his opinion I couldn’t really take seriously. However, after reading a book called “Aspergirls” I realized (and diagnosed myself) that that was me. I was reading a biography of me. I’m so thankful for sites like this. I gasp and laugh out loud at so many things, because all I can say is “That’s me to a T!”
🙂
Just started reading. Think I might have one.. A new counselor told me to “pretend I’m not ASD/Asperger’s” when I was describing difficulties.
Of course there’s several ways I could take that. To not impose limits on one self or dwell.. Or on the other hand I could compare it to telling someone to pretend they’re not gay. Etc.
I can “act” “normal” at cost, but that doesn’t make it so. I certainly don’t hold it against that counselor.. Kind of wish there was an instruction manual that would save me the headaches though.
that’s a tough one.. depends on the counselor’s intention. Thanks for sharing. 🙂 Pretending to be Normal is a great book by the way about ASD
I think a better response would have been to acknowledge your symptoms & situation and to work out, with the counselor’s help, the limiting issues for the best outcome. I don’t want to be defined primarily as being “on the spectrum”. I want to be known as Allison. I do find it helpful to tell someone my dx when problematic behavior occurs & work with someone to modify the issue..for my own benefit and subsequently, that of others.
I totally agree with you. I don’t like to do things that embarrass me in public and I would really like to overcome asperger’s syndrome. I’ve never let myself accept that I have a disability because it doesn’t do me any good. I want to be normal.
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#6 made me giggle! “At least you don’t have autism”. I’m one of those who agrees it’s on the autism spectrum.
A lot of this is very good advice for just about any situation. Although I honestly do believe everything happens for a reason and I don’t see my autism as a bad or accidental thing. Oh well, it’s been well established I’m weird! =)
🙂 sweet comment
Hi just recently been told by my psychologist that I’m most likely got aspergers and when I told my husband he said to me to not use it as an excuse and try to move on.i swear it’s like since I got this label he wants me to try to act “normal” and still struggle to understand my difficulty of socialising and why I breakdown and get anxious,but I already can relate to some of what is said here but mostly with the idea that I should just move on from it which is hard since this is still very new to me.
please consider joining the facebook page to the left where you can find many other aspie females. The best to you.
I hope you will consider getting a Google + page in the future. 🙂 Allison
Hello. I am a 35 y.o. woman with AS. I basically had to beg my psychiatrist back in 1998 to tell me what was obviously wrong with me (not me as a person, but the life-long experiences I had been enduring that had worsened in my teens). He reluctantly told me I had “autistic symptoms” and didn’t want to tell me as I might use it as a crutch. Autism is a very real diagnosis, just like cancer, diabetes or bi-polar disorder. I can appreciate someone not wanting me to “throw in the towel” and give up on life. I have improved much with faith and therapies, but there are some things like extreme sound sensitivities that obviously won’t go away. They can’t be wished away. I would say to acknowledge and accept you might have AS and seek help in doing whatever you can to improve the areas you struggle in, knowing that while they may never improve 100%, they might improve 40-50%. I’m not trying to spam, but I will list a site and organization that has been very helpful for me. I hope and pray all the best in your journey. 🙂
OASIS @ MAAP http://www.aspergersyndrome.org. You will find articles and support from people on the spectrum. You will also be able to find resources by state or country. You can also e-mail them @ info@maapservices.org. If I can be of any further help, feel free to respond to this comment. This post is excellent.
thank you for all of your comments and resources
Hello!! Being one of those that doesn’t want to be that girl who read something on the internet and now I have this condition, what are the best next steps? Any recommendations on who to work with to determine if this is a valid issue for me? It would be nice to have something to attribute to what I feel on the inside so on the outside it doesn’t come across as what I call CBS (Crazy B***h Syndrome) 🙂
I made cold calls to psychologists, asking the front desk people if the psychologist knew much about Aspergers. Then I sent the psychologist a link to my blog about my traits, before I met him. Then I went in and proceeded. 🙂 Most don’t know about females with Aspergers and need some help with the information.
1.You for many times overdo many things
2.Goodnight and be easy on yourself please~
3.You should choose one, your goal.
I usually take these and similar things seriously…I mean I interpreted those things as discipline for coping with my problems.
“Things Not to Say to a Person with Aspergers” comes to me like
“they are just basically nothing but irritating sound, even though you may think there is something to take seriously”
and I really feel same with u. I hate those things!
especially when those are came from whom I love.
person talking me like that are seemed like a much more grown up and high self-esteem person.
I was tried many times to write journal and failed.
This comment might be a journal for me today!
“Why is their pushy approach doomed to failure? It’s a basic law of physics that for every action there’s an equal and opposite reaction. Any time you feel shoved, whether by someone’s hand actually on your chest or by someone trying to boss you around, you will naturally tighten up and resist so as to maintain your equilibrium and balance. You will attempt to exert your self-control and preserve your dignity by refusing to do the thing that you are being pushed to do. The paradox is that you often end up hurting yourself.”(David D. Burns, Feeling Good)
“It can be very confusing when someone obnoxiously insists you do something that actually would be to your advantage. This puts you in a “can’t win” situation because if you refuse to do what the person tells you, you end up defeating yourself just in order to spite him or her. In contrast, if you do what the person tells you to do, you feel had. Because you gave in to those pushy demands, you get the feeling the individual controlled you, and this robs you of self-respect. No one likes to be coerced.”(David D. Burns, Feeling Good)
I really know how this is. I followed my mentor’s saying…. 1 month ago I just burned the bridge though.
I don’t need to feel agony for her high self-esteem though she is just 22. Why I am in agony? My core belief for that is ‘life is unfair’ or ‘I am worthless’. But I can get a high self esteem. Just putting efforts on myself for some years may make me like that. I now decipher that situation in other helpful way.
I am a smart wise person, and I demand to be treated as such. I have gone through some learning experiences, but I kind of regret one of them! I will not put up with being called, naive, not seeing the bad side of people by my father, or any relative! It’s just a delusion they have! I have also been mistreated, belittled with #8, it’s not a big deal! Being supportive of my aspergers syndrome and understanding what might not be a big deal with NT people, is a big deal to an aspie! I have just turned 30 years old and shamefully still have to be imprisoned in my father’s abode, feeling depressed about him making “us” eat supper at 6:00 or later, selfishly whipping up a fatty meal when 10 years ago I started losing weight after hard work, and being overweight the last 10 years before.Where I can work out earlier. I feel I’m gaining back some pounds after the stress of finding out my grandmother has alzheimer’s. And my father treating me like a overgrown child, object because of my aspergers syndrome, and my aunt in Florida, seeing me as a human being with value and potential. But my aunt has serious flaws too, and her and my dad have big acting like petty juveniles and her being mean to my grandmother with alzheimer’s. I want to be trim and beautiful, where I can get a nice man in my life. That was meant to be a major goal in my 20’s, which are the best years, have a romantic partner before I turned 30 was a major life goal for me. Also a successful career and an independent life. Now sometimes my feel my life is wasted and feel bad about myself. And I have been seeing a therapist ever since I hit 21 because of the emotional distress cause by misunderstanding “family members”. I better work on my goals harder now before I end up pulling a Robin Williams!
Hey sweetie, sound like you have a supporter in your aunt and some non supporters. Sometimes making a break from negative folks, even parents, is in order. I did so at age 37, long after I should have. Research, save money, look for a good friend or two. Not easy things, but don’t let anyone break your stride. I am aspie, self diagnosed a couple years ago at 41. My childhood was filled with abusers and I only had Grandma on my side. I have a husband now and child, but it was hard to learn how to share space and time. Its good now. I have struggled with depression, anxiety, but I keep plugging, learning, gaining more happiness. Love yourself first 🙂
I’m a NT married to an Asperger’s female for the past 12 years, although we have been together for more than 17 years. It was only in perhaps the past year or two that Asperger’s was even a consideration, but being that my wife is very intelligent and meticulous she discerned she has had Asperger’s her entire life. As a medical professional of more than 20 years, I made the regrettable, egregious mistake of stating numbers 12, 17 and 18. It’s taken me time to understand what she has been telling me while I was insistent she have a “formal diagnosis”. In retrospect, I see where that would have made no difference and, in fact, I was invalidating her. I started reading online at first, and then I bought a couple of books. One in particular was helpful for me; “Very Late Diagnosis of Asperger Syndrome/How Seeking a Diagnosis in Adulthood Can Change Your Life” by Philip Wylie and available at Amzon.com. Chapter 4 explores the advantages and disadvantages of a diagnosis.
In my spouse’s case, she is 58, and seeing a professional may validate this (or may mistake her for another disorder), but at this point we are both seeing things more through the lens of Asperger’s. Having a “formal diagnosis” is moot and at least in my wife’s case won’t change anything. What I’m fearful of, and I would be speaking for her, is that a professional may mistake some of the maladaptive anxiety and mood disorder to be primary and not secondary. The pervasive, consistent traits she has with Asperger’s she has had since a child, and throughout our marriage.
This week was an epiphany of sorts for me, and the climax of escalation of some issues we have had recently with live-in guest that caused enormous stress for her, cemented this in my mind—that I am not understanding that we are wired differently, and the process of living together with this is only beginning. But in that beginning it brings an understanding I hope.
I printed the two pages from your blog in regards to what not to say and perhaps should say. I circled the three comments I have made in the past, and on the other page, what I should say, I circled what I believe now. I left these for her to see. Our communication is much better in writing, and I have tried to be better at being more direct, concrete and not draw complex abstractions and comparisons.
Thanks so much for your blog and insight!
You are most welcome. And I can hear inside your words a lot of familiar struggles and questions. She is fortunate to have your support and sincerity. Best wishes.
My niece asked me what it’s like to have Asperger. That’s the approach I like the most. I also get kinda stressed when people ask if I have a diagnosis. Just can’t afford one right now, and I’m pretty sure I have it. A woman I talk to at work asked if I went to a special school, said she used to work with autistic kids.
I am 35 years old and I found out that I’m on the spectrum by a clinical psychologist when I was 31,I have chosen to only tell others on a need to know basis due to Worrying about the responses I will get,Even my husband who told me he always knew I was on the spectrum before I knew will sometimes say things like “we are all on the spectrum” or “everyone feels like that sometimes” and while I know he has the best intentions he doesn’t realise that it makes frustrated and feel even worse and makes out like I have been overeating to my life’s problems,it does frustrate me extremely where I have gotten upset about it and prevents me from letting others know even on a need to know basis and I feel isolated and disconnected from others.
please consider checking out Facebook support groups listed on myspectrumsuite.com Lots of women with similar experiences. All the best to you. I have found cutting out certain foods helps me not to over eat. Feel for you. Wishing you the best.
Sorry I meant overeacting to my life problems I just realised the typo though when I’m upset I tend to eat to lose my appetite.
*lose my appetite