“Ethan suffers from Asperger’s syndrome and attention deficit disorder…”
Excerpt from CNN article, What’s Next for Ethan After Alabama Standoff.
Even when we were in the midst of learning how to manage Teddy and Asperger’s, even when we were hanging out on the backside of the learning curve, never, never, ever, ever did I think Ted SUFFERED from Asperger’s.
You suffer from the flu, not from Asperger’s.
And if we are ever going to get to the point of true tolerance and inclusion of Asperger’s and Autism, we must leave this word and all the negative associations it brings, behind.
Imagine the parents of a child just diagnosed hearing, “Your child suffers from Asperger’s.”
How is that going to make those parents feel? What kind of fear does that encourage?
For almost two decades now, each and every time someone has used that word to describe my son I corrected them. I have looked MDs and PhDs in the eye and said, “Asperger’s is NOT a pathology, it is a neurology.”
I have written letters to authors who have used “suffers” in articles I have read.
I just can’t tolerate that word.
To me it implies an infirmity, something to be pitied.
My son and others with Asperger’s are not infirm, nor are they to be pitied. They are people, like everyone else, and should be treated with respect and compassion, just as everyone should be.
And so, even though the legislator who represents the part of the state in which this incident occurred was speaking in a supportive way of the little boy kidnapped at gun point, he also, without even realizing it, was contributing to a negative perception of Asperger’s. And as a citizen of his state, (although not his district) I will send him a gentle email both thanking him for expressing compassion towards Ethan and the challenges of Asperger’s, but also kindly asking him not to view Asperger’s as something someone suffers.
Maybe I am a crazy idealist when I say I look forward to a day when Ethan is just Ethan, Ted is just Ted, and the fact that they have Asperger’s is no longer even mentioned. I look forward to the day when Asperger’s is so widely accepted and understood that it is as mundane a descriptor as the color of someone’s hair.
But until that happens, while we still use Asperger’s, can we please just drop the suffers and say, Ethan has Asperger’s.
This is wonderfully said. I had not thought of the underlying thought pattern behind the use of the word “suffers,” and I have probably used it myself in talking of autism. I am now educated; I shall try NOT to use that word. My first grandson has autism, and though he has his struggles, he is a wonderfully happy child for the most part. I would not consider that “suffering.” More kids should be as happy as he is. Thank you so much for your perspective on this, and for being bold enough to outline what you and Ted have gone through over the years.
Thank you, Sue. I appreciate you stopping by and taking the time to share your thoughts. I think often we use words and don’t think about what they mean. I don’t believe we do this in a mean-spirited way, just out of habit. I think that may be the case with the word suffer, but I also think for it doesn’t.
Thanks for this, like taking the thoughts out of my head. I am an aspie, and I would never say that I am suffering. Like you it implies that I simply cannot live a normal life due to being so infirm.
I am so glad you understand what I was trying to say. As a mom, not an Aspie myself, I definitely do not mean to be persumptious about the conclusions I draw regarding autism. They merely stem from my experience as an observer and a questioner. I am glad you stopped by and contributed to our conversation.
Ahhh! I read that too, and thought the same thing. Every time I checked on CNN to see how that little boy was doing, I cringed when I read that part. My son “suffers from” Aspergers the same way I “suffer from” brown hair. Ugh. It’s just part of who he is – not exactly a disease.
Erin, you and I seem to read a lot of the same things. And draw the same conclusions. I guess it is shared experience. All the more reason I am glad we have this forum where we can meet up and be part of a community.
You are not a crazy idealist… you are raising your bar higher, just as I am learning to do. Thank you for this!
I appreciate you saying that although I think you may be the crazy idealist in thinking that I’m not!
(I can say that of course because you are my friend!)
Suffer is such a poor and thoughtless word choice, though I think it’s one that people simply repeat because so much of what we read about autism in the media is alarmist and most people are ignorant of what ASD is. Your campaign to educate is a noble one and I’m always heartened to see those who have the energy for this kind of advocacy doing it. So thank you for that!
I understand what you mean about wanting to get to the day when Asperger’s isn’t the first thing mentioned about a person, not the sole or defining descriptor (which is I think what you mean?) but I’m not sure I’d want it to never be mentioned. Being autistic is more a part of me than my hair color. I think it falls more along the lines of race/ethnicity, gender or sexual orientation. In the same way that we can be proud to identify with a group based on one of those, being autistic can also be a source of pride and self-identity. It can be one of the things that defines us in a positive sense rather than being the sole deficit-laden descriptor applied to us by others.
And now who’s the crazy idealist.
I understand what you are saying, I do. And I thought of race as well. I thought about how there was a day, and for some that day is still today, when people automatically said “the black man” rather than “the man wearing the red shirt”. I would like to get past the identifying by labels, by colors, and yes, even by neurology. I think we can still identify with a group, the man is still black and may very well identify with that heritage, and not have to use it as a descriptor. Correction noted
I would like to think the man in the red shirt is more a man than he is black, or gay, or autistic. The fact that perhaps these three things contribute to who he is is wonderful, but do they define him? I would rather think he would chose to define himself. I guess I like how Ted sees it. Diagnosed for 17 of his 21 years he says being autistic, for him, is “inconsequential.” Not that he disowns it, he doesn’t it. He just doesn’t see it as what defines him. Instead he prefers to pick words of his own choosing: Smart, opinionated, correct, (yup, you read correct. That’s my Ted!) those are words he associates with. Autistic, and the word I am growing to detest, neurotypical, they are, well, let me just be bold and go to the extreme for conversation’s sake, they aren’t succinct descriptors. What is autistic? Really? How can one word describe all the uniqueness, all the characteristics, quirks, complexity, beauty of an individual. Just as neurotypical is a poor attempt to describe 98% of the people who are not autistic, how is autistic a better descriptor of someone than the color of their hair, philosophically speaking? Please understand, these are the questions I ask myself, and I am not trying to argue with you, but rather, I am trying to share my confusion with you and I’m relying on the little bit of trust in each other I hope we have built. I am working through how I feel about this issue, how labels, how autistic and NT can be polarizing. I am trying to understand how we can learn to acknowledge significant aspects of someone without getting lost by using a word. Because it seem to me the more a word is used, people get lazy about it, it gets used with less and less thought, and with less thought quite possibly less and less meaning. Does any of this makes sense? Please, please understand, I am just trying to make sense of how we can begin to see ourselves, all of us, as HUMAN, and more unified than we currently doe. 
I love your reply and don’t see it as argumentative at all. Discussion is good–it helps me test and form my ideas, especially ones like this that are still taking shape. I’m glad we can tug at this concept a bit together and hope you’ll take my reply in that same spirit. I totally get where you’re coming from. Identity is complex–the tension between dividing and uniting, the desire to label oneself but not to be labeled.
I don’t think being autistic defines me, but I think it’s as much an undeniable part of me as being female. It informs the way people respond to me (like it or not) and it colors the way I interact with the world at times (though not always). Being female doesn’t necessarily separate us from men. It can be polarizing or not, depending on how we approach it. But it does make us biologically different in specific, significant ways and that difference can influence how we experience life and how others treat us. My neurology is like that for me too.
But I get that classifying people by neurology can be divisive. Every time I use the word neurotypical I long for some better approach. My husband can’t stand it and says it alienates people. I increasingly find myself avoiding the word and looking for other ways of describing differences. Allistic is coming into wider usage and it’s at least more specific and less pejorative sounding. And Ariane recently coined the term “neuroWTF” which is all inclusive.
Apologies if I’m infodumping. Special interest and all that.
Oh you aren’t infodumping at all. I love it. I love the discussion. I admire and respect each and every point you make. It comes from your mind, from your heart, from YOU, and that is so very important. You are taking the time to share who you are with me and I think that is absolutely awesome. That is the good stuff! I love that through our mutual effort we can both work through issues that cause us to pause, ponder and question. I love that. And thank you for understanding and not feeling personally attacked. It isn’t ever my intention to personally attack someone. No. Instead I want to understand how I feel so I can better understand how others feel. It’s just that, I don’t know, the older I get, and this may sound weird, but the fewer differences I see amongst people. I guess what I mean by that is I keep coming back to we all are human and to be human is to be flawed, not flawed as bad flawed, just flawed in not perfect, flawed. No one has it totally together, no one understands all things. When my husband was in his doctoral programs one of the IO psychs told him all people are neurotic and over time I am coming to agree with him. By saying that I don’t mean neurotic as horrible and ill functioning. Quite the opposite, just like flawed, I see neurotic as accepting a lack of perfection, as absolutely honest about the human condition. And then I think, if we could all accept our lack of perfection, if we all could admit and accept that there are things about ourselves that we struggle with, that we don’t understand, and if that was okay, then could we accept others for being that same way? And then would we be able to enter interactions with each other not from a position of trying to defend our perfection, which is a hopeless pursuit, but rather, spend our energies trying to understand and support each other, provide give and take, offer our strengths were others are weak and vice versa. Could that reduce the need for all these labels, could we just see the humanity before us and make better progress toward shared goals? My goodness, I carry on. Yet, I wonder. And again, I am so very grateful that you have given my your ear and allowed me to relieve myself of these thoughts that have been brewing inside me for several weeks. I appreciate you. Thank you!
I think we’re seeing the other end of the pendulum swing with regard to how neurological and psychological syndromes, disorders and diseases are approached and viewed. It used to be that people were just labelled ‘crazy’ (not that that view has been eradicated…). Nowadays, attempts are being made by the medical community, public figures, media, etc. to afford these groups the same rights, ‘respect’ (?), access to care and info that those with diseases of the body (e.g., cancer, diabetes, etc) are. Therefore, just as one can ‘suffer’ from heart disease, one can also ‘suffer’ from AS. The pendulum will steady itself – with the help of writings such as yours
With regard to the word ‘suffer’, I think it is strong in our collective vocabulary right now, and I think we can blame the pharmaceutical industry for that. It is amazing what one can ‘suffer’ from these days, and even more amazing that there is always a pill for it…
I like thinking of it as a pendulum and it righting itself. There is the initial mistake, then an over-correction then a balancing out. The pharmaceutical industry most definitely has much to gain with the promotion of suffering, oh to go any farther would be picking low hanging fruit, but also I think it’s the pendulum situation again. We are just beginning to speak more openly about mental illness and neurological conditions so perhaps that perhaps we don’t have the vocabulary worked out yet. Just thought I would throw in my two cents. Thanks for your words of support. They are always appreciated!
I used to take offense when people offered condolences for our special needs child, as easily as I took offense at others’ assumptions that we would take it in stride when we knew we were different. Then I went through a phase where I questioned if we were knee-jerking our overreaction to others’ assumptions that our child “suffered,” since he was capable of so much more. Then as time went on, I saw he did suffer in ways we couldn’t comprehend, and that I suffered in ways others couldn’t comprehend…and that others suffered in ways others couldn’t comprehend. And it seems that human nature is to reach out when suffering is sensed at some level, even if it’s their own suffering projected upon those of us who others presume would suffer, when we’re actually all the richer for it! Compassion bridges all misunderstandings, in all directions
It is interesting the power of words, their significance to individuals and the emotional response they evoke. As I pretty much always have made a suffer-pity connection and you have made a suffer-compassion connection. See, in my experience the word suffer was not used by those who knew us, it was used by those who assumed they knew us, like a new doctor who after only a few minutes with my son would begin drawing conclusions which began with “Those who suffer from Aspergers…” That just never settled well with me and maybe I am very dense, and I don’t mean that sarcastically,
in those sorts of conversations I did not ever sense compassion, to be very, very frank, and this was just MY interpretation, I often sensed arrogance. But there in lies the beauty. The beauty of having differing opinions and being able to converse about them. Because we do seem to agree that all people, at some time, some more often than others, experience hardship. Hardship is an inevitable consequence of being alive and in whatever form hardship takes, when people are more sensitive to each other, if we can be more supportive, more helpful, yes, more compassionate to each other, it can help make those hardships more bearable. If we can kindly communicate to each other our feelings, especially when there are differing views, I think that does help to build those bridges of which you speak. I think the key is to approach communication with your key word, compassion and also consideration. Thank you so much for being part of this conversation. I appreciate your point of view, I appreciate being reminded of the other side of the coin so to speak. I appreciate you taking time to share your feelings. Thank you. 
What a beautiful and thoughtful response! I love the way your mind thinks. I, too, have struggled with arrogance, both in others and in myself. The bottom line in having a special child is that an entire universe is opened up that we and others could never have known before. There is no suffering once you live the life that others presume is “suffering,” because it’s a paradox. It’s really the greatest joy one can know. Thank you for your deep, heartfelt passion.
And thank you for such eloquent and thoughtful words. I love, “There is no suffering once you live the life that others presume is “suffering,” because it’s a paradox. It’s really the greatest joy one can know.” How very true and so very profound. Thanks again for being part of the conversation, I enjoyed it immensely.
Bravo for the post, and for everyone’s comments.
Why thank you. I too enjoyed the good, and important conversation that emerged from the post.
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Thank you for raising awareness of the use of the word sufferer. I really detest it. I have a formm of muscular dystrophy and cringe when I not infrequently hear it to refer to us. I am personally quite mobile and there is no doubt that people with some forms of MD really do suffer but I just don’t like being referred to as a sufferer. My illness is only a part of who I am. It isn’t me. A lot of us living with adversity are battlers, fighters or just living plain old normal lives.
I used to work as a communicator in HIV /AIDS prevention and there were a number of words which were considered “politically incorrect”. Sufferer was one of them. They also said “living with HIV/AIDS” rather than having the disease. I have found this concept very helpful in accepting my health issues and seeing my disease as a separate entity, not who I am. I am still me.
Thank you for your comment and bravo on your attitude. I admire you for that. I admire that you don’t take on your disease as your identity. I try to encourage my children to not adopt a victim mentality and with that mindset you do think about the words you speak. I think we just get lazy sometimes and stop paying attention to the meaning of the words we use. I wish you well and a continued good attitude as I am sure it serves you well. Gratefully your partner in extinguishing the over use of suffers!
Thank you for wishing me a continued good attitude. You obviously understand the challenges. I agree with you about the victim mentality. My son had a very difficult year at school a few years ago and was terribly ostracised. I worked closely with the school and they put him in with different kids the following year and had a fresh start. It’s really paid off.. It’s hard not to get that victim mentality when things are going badly but somehow need to stand tall and proud.
I am enjoying your blog and will stay tuned.
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