Thoughts and illustrations on living with Asperger's Syndrome.
"Life is pain! Anyone who tells you different is trying to sell you something." The Princess BrideLife is hard; autism is harder. I know I've wished my autism would go away, especially when I'm depressed. Other times, I wouldn't trade my abilities for anything of the world.Yeah, I could do without the hard parts, but I've never met anyone who thought that life was too easy. Being without any disabilities would be wonderful, but if I had to pick a disability, I'd pick Asperger's. I really do love the creativity and oddity that marks me and my two autistic children. Then again, I come from a family in which high functioning autism is common on both sides.In the end, I don't know if I would be better off without my autism, but I really believe that the world would be much worse off without us autistics.John Mark McDonaldhttp://autismtothefourth.blogspot.com/
Thanks, scintor, for describing the competing feelings many of us have about our autism. And how many of us can appreciate autism in other people more easily than in ourselves? So it's a fascinating question, whether it's "okay" to wish your autism away.
I don't have an answer to the main question, I just wanted to thank Scintor for putting a smile on my face with his opening line. I love that movie. =)Although, now that I think about it, I don't think I would change things. But that could be my fear of change speaking. ;) that was semi-serious though....I mean, I don't know what it's like to be "normal"...so how would I know if I would like it better. At least I know what to expect now, for the most part.
Better the devil you know than the devil you don't, in other words.
Yes things would be better but I wouldn't be me-yes I feel like I have been denied and cheated out of things that my peers may have but I try to be happy about things-it's rough though.
Many of us are in that boat, C.R.
Awesome post Matt!I love your blog because it's so accurate and just sums up Aspergers perfectly! I just got DX'd last January, so I'm still figuring out what this means for me. I must admit, as I'm finding my place in this world I have a bit of both feelings. Are there days when I want to be able to understand sarcastic humor and figures of speech? Do I wish I could figure out how people manage to make plans outside of work/school all the time, and how to make tons of friends easily? Do I wish I could be in a loud, crowded place and not feel like I'm going to explode? OF COURSE! But would I give up being able to see the characters in the stories I write as vividly in my head as I do a real person? Being able to plan how a plated dish or showpiece will look when it's completed, before I even start? Subconsciously knowing how to cook things, and when to move on to the next step? The ability to focus on a given subject and tiny details? Not in a million years!
Welcome, Lydia! Even those who have known they are Aspie for years experience what you describe.
Hey Matt,I just wanted to pop in and say thanks, for thinking about the flash blog and coming to your own conclusions about the message. I also wanted to clear up something... As a major organizer in the flash blog, and an Autistic adult, I don't think Autism is all sunshine and rainbows. (Though I am kind of obsessed with rainbows - they have every color in them, and always in the same order!) While some of the blog posts included in the flash blog WERE "sunshine and rainbows", many of them were not. The point of it wasn't to say "you should NOT feel that way, Autism is all sunshine and rainbows" and invalidate people's feelings. It was, rather, to help change some of the ALWAYS negative message that Autism gets in the news. Messages of tragedy, horror, family dysfunction, etc. It was also to create a resource and message of "you are not alone" for people, and a message of hope and validation for parents and autistic individuals alike. If someone still wants to change their neurotype after hearing from people from around the world who are supportive, kind people, that's fine. Everyone is entitled to their own opinion, and I personally have no qualms about that. But everyone should be entitled to be aware of more than just the miserable before they make up their minds. It's a little like the "It Gets Better" project - while every LGBT individual is entitled to their own opinion about whether they want to be LGBT or not, they still are, and at least they now have a resource to go to when they need the support. That's what the Flash Blog is/was, really. For me, the pro/cons balance out the other way. And I should be allowed to express that the same way you are expressing the opposite opinion here. (I might also be a little defensive about my right to voice my opinion on this, because my blog was a major source of "discussion" against allowing any autistics the right to any semblance of happiness about their lives and their autism during the beginning of the flash blog. And if you get a chance, please read my post for the flash blog. You'll see that i say much of the same things I said in this comment. It's not about saying "your feelings are wrong." It's about saying "there are others out there like you, going through similar things. Whether you change your mind or not, it doesn't matter, really. But please know that you are a whole person, and deserve to be treated as one. You are not alone" post is here) Cheers,E
Hi E, thanks for your thoughtful comment. I hope you don't feel I was criticizing the flash blog, because I think it's an admirable thing. And you're correct that it wasn't just unabashed positivity. My post is about the constant mental struggle between wanting to be proud of our autism and wishing it away. I think many of us experience that. We can lean one way or the other, or both, depending on circumstances. When I put myself in the mind of the person doing the Google search, I saw that nuance, and thought about what it takes to sway a mind from one point of view to another. Can a mind be swayed by reading others' perspectives on the screen? Sometimes, and other times it takes more time and reflection. Does the flash blog provide a valuable resource? Undoubtedly. But as you say, what's most important is the understanding and acceptance it offers. And that's what Baffle is offering in the cartoon.
Sometimes I'm glad I got diagnosed when I was older, because by that point I was more or less comfortable with myself and had found a place where I know I'll always belong. Once the initial "Crap there really IS something wrong with me" phase wore off, I came back to the conclusion I'd already come to long before the diagnosis--that the problem was at least partly other people refusing to make the effort to connect to me (not that I was an angel--I'm not proud of some of the ways I used to behave, but the indirect 'help' I got from my peers wasn't remotely helpful either).I can't help but wonder right now if things would have been different if I'd found out when I was younger. On the one hand, I may have gotten the support I needed while I was still in school, but on the other, life sucked and I may well have decided that I didn't want to be autistic. By the time I finished high school I felt like I was constantly on the edge of a mental breakdown, and that can pretty much be traced back as being a result of my autism.I can't really blame people for not wanting to be autistic. I wish they didn't, but I know that the experiences that one has as a result can leave marks that will follow you for the rest of your life. Society needs to change, but until it does people will suffer much more than they need to. I can't blame people for wanting to be 'normal'--everyone wants to feel accepted, to feel wanted, and being different is a barrier to that goal.
Well said, Jayn. Thanks.
Hey Matt, Just wanted to chime in here. I wrote my piece for the Flash blog with my daughter in mind. I kept thinking if she were able to express herself, and said something like - I hate this. I wish I didn't have Autism - what would I say to her? What would I want her to know? So I wrote this - http://www.huffingtonpost.com/ariane-zurcher/aspergers_b_1464520.html But I'm coming at all of this from a different perspective. I'm coming at this as the mother of an autistic child. Her inability to converse or communicate her feelings and thoughts cause her tremendous pain. Her sensory issues cause her tremendous physical pain. I see how so many people treat her, speak to her as though she were an animal and though she cannot express how that must feel, it has to cause her pain. I would give anything to take away her pain. ALL her pain. ALL her challenges. But I can't do that. I wish I could. What I loved about the Flash Blog was that it was a chance to direct the conversation around autism in a slightly different direction. It veered away from the fear, the horrors, the hand wringing, the despair and for a little while, it was about something else. To me, what I wanted to convey in my post was love. The love I feel toward my daughter and a more general feeling of love toward all of us as flawed human beings. I hope this makes sense.
Hi Ariane, thanks for sharing your post. It is beautifully written, and I had read it before. I understand wholeheartedly the desire to counteract feelings of pain in a loved one with words of love and acceptance. I admire what the flash blog accomplished in mobilizing an army of bloggers to put their positive vibes out there in a way that reaches directly out to your intended audience.As an autistic adult, I decided to add my voice to the conversation the only way I know how, which is to be honest. There are times I have to say, "You know, having autism really does suck!" I don't think this comes from unhappiness or lack of self-acceptance, just a simple desire to have an easier time. Landon Bryce put it very well here: "You can both love yourself and wish your life were easier." As much as I might like to have a "well of positivity" I can turn to every time I need to break out of a slump, sometimes all the motivational speeches in the world can fall on deaf ears.I would also recommend Stuart Duncan's recent post, in which he writes, "Some people may just wish to no longer have autism because they simply do not want to have autism... And we need to be accepting of that too."So basically, my post is questioning what self-acceptance really means, and whether it's possible or worthwhile to induce self-acceptance in others. We all want the same thing, which is for autistic people to have happy and fulfilling lives. Hopefully by asking questions such as this, we can better understand the best way to help them do this.
hi Matt, what I really like about your blog, beyond the fact that you're very talented and are using your talent, is your honesty. Self-acceptance and whether we can impact others to have the same is such an important conversation. What I have grappled with is slightly different in that my journey has been about "acceptance" of autism. When my daughter was diagnosed I tried all kinds of dubious "remedies" in my attempts to alleviate her pain, her internal issues, her problems with language, processing and communication in general. I would have told you at the time that I absolutely accepted her as she was, what I didn't accept was her "autism." I compartmentalized the two. (And it must be added it was very unhelpful to read about all the parents who had done X, Y and Z and now had "recovered" kids. Which adds a twist to the whole conversation because now I'm an asshole if I DON'T try X,Y and Z. So there was my daughter, Emma and there was her autism which seemed to cause her such suffering. It was very hard for me to understand that her "autism" was also a part of who she is and that to love her completely was to love "it" also. For years I was engaged in a battle with "it." I've written about this on my blog, but it wasn't until this past year that I began to shift my perspective. And it was because I found blogs written by Autistics that made me see a way off the battle field. To many, I am the worst kind of mother. I have read posts written by Autists who have stated clearly and emphatically how hateful parents like me are. I have been fortunate in that the nastiest comments I've received have been on my Huffington post pieces and not on my blog and no one has attacked me for trying some of the things I've tried, at least not yet. (I'm pretty good at doing that on my own, which is also not particularly unhelpful. I'm working on that!) I have to live with the choices I made on my daughter's behalf. I regret many of them. I have come around to seeing things very differently than when Emma was first diagnosed. Thankfully I have evolved and continue to evolve. It's nice to have some blogs where it feels safe to discuss these things. I really appreciate what you're doing. These are important conversations. Maybe one day my daughter will be able to join in too, which would be much better than anything I might say. But in the meantime I will encourage her, support her and love her, exactly as she is, in this moment.
Agreed - it is an important conversation, and I love that a doodled giraffe was able to start such a meaningful discussion. :) I remember Emma's Slice of Life post which to me, depicts a happy, fun-loving girl who is clearly loved by her family. I would never have guessed you ever needed to "evolve" so much, because you are so accepting today. I'm sure others see that as well, so I hope you're able to forgive yourself for thinking differently in the past, and to disregard anyone who would consider you "hateful." We are all on similar, but different journeys, and I'm glad Autism Positivity helped you along in yours. Thank you for sharing your story.
"Music speaks to her in a way that conversational language cannot."... boy do I relate to that one!!Do I wish I wasn't?... I have my moments where I really wonder if I wouldn't be better off being neurotypical. Sometimes, I just don't know what to think or feel...Chris
I have those moments too, Chris. You are entitled not to know what to feel!
"Insist on yourself; never imitate. Your own gift you can present every moment with the cumulative force of a whole life's cultivation; but of the adopted talent of another you have only an extemporaneous half possession.... Do that which is assigned to you, and you cannot hope too much or dare too much." - Ralph Waldo EmersonFriend of mine posted this on another page... found it just after I posted last comment. Thought it really meshes well with the whole idea of this post.Chris
I am glad this conversation is happening. I was diagnosed in my 40's just a couple of years ago. At first, I was glad to know there was a reason I couldn't function in certain environments. Then I got angry at the hurts and struggles I've lived through. Then I got confused by the whole "autistic and proud" thing. (Which seemed too much like saying "brown-haired and proud" if you follow me.)Now that the conversation is getting more grounded, I'm finding more value in it. Like many, I have good days and bad. Days I like it and days I don't.Thanks for continuing the conversation.D~
Hi new to your blog! Love it so far!About this piece: I think everyone faces some battle in life. Life isn't peachy all the time. And that's ok! Thanks for your refreshing take on things!
Welcome and thanks!
Hi, Matt. I'm Forgotten, one of the participants in the flash blog. :)Not speaking for the group, just for myself, I wrote my post for the flash blog to give whoever searched that phrase hope. I wanted them to know that there are those of us out there that would step up and offer them support and an ear to listen to them if they needed it.You give people in our situation hope every day with your blog. I appreciate you pointing out the other side of our positivity flash blog. There are those out there who weren't looking for rainbows, just someone to commiserate with and that's okay, too. Everyone could use an ear to bend when they just want to voice their frustrations and I hope that my post left it's reader with the understanding that I would be there to listen to that as well.My personal blog is full of different posts about a large range of things and I talk about the hard parts of parenting children on the spectrum as well as coping with the hard parts of being an Aspie myself. There are so many more things to being an Aspie than will ever be covered in our flash blog because our focus was to try to be positive. My door is open to anyone and I am more than willing to commiserate with someone if that is what they need at the time, too.Thank you for giving someone another place to look when they search us out. Your blog is a wonderful place to start. (As soon as my sons are old enough, I will be sharing it with them as well. They can't read just yet.) Keep doing what you do because you are a wonderful inspiration to many.
Hi Forgotten, thanks for your comment and your kind words. I like your post, and it's clearly welcoming and hopeful. Each of us can only guess what the mystery Googler was looking for. Information? Comfort? Commiseration? We all had to step into that person's shoes and put our own spin on it when we responded - and it's a good thing to have so many different interpretations. Like I said above, I support what the flash blog did in creating a resource of different perspectives - and the more perspectives there are, the more likely the searcher is to find the one they are looking for. Ultimately, we all want to help and to listen as well as we can.
I like how Baffle turns the question to the "audience," what a smart group leader he is. :) It took me awhile to come back to this cartoon because I've been having a particularly stressful month and while sometimes I'm tempted to blame it on the ol' brain, I realize that sometimes that's just the way life is and you have to roll when you're pushed or you just churn forever in the turmoil and feel there's no way out.I think the way I've been feeling about the whole "I wish I didn't have Asperger's" is that in Western culture in general, there's this idea that somehow our lives would be better if we were just smarter/faster/fitter/etc... I see a whole bunch of NT folks who complain about not being able to find a perfect soulmate/job/life, it's a challenge that a lot of people face. But as I read in one recent article about an autistic man who was desperate for a cure, one of the comments really resonated with me: they said when they hear of an autistic person who wishes they didn't have autism, they wonder who first put that negative idea in their head, who caused them that pain? I remember being a fairly cheerful and upbeat kid right until I was being told that I was stupid, clumsy, silly, etc... *those* are the things that started to sink me, not my brain. So (longwindedness aside), I would say to Baffle that I hope those who feel their brain is a doorstop to what possibilities are out there, there *are* so many things that can open that door and make life so much more compatible with one's brain. Do I wish that sometimes communication was easier? Very much so. But we all deserve patience too.Great comic as always, very thought-provoking and important. - Hanne
Thanks Hanne, and hope things improve for you.