The problem with the expression “Different, Not Less”

When I saw the Temple Grandin, HBO movie, I, like many other people, quickly adopted the phrase “Different, Not Less.” It’s such a powerful statement.

Completing the spectrum

Completing the Spectrum

If you’ve followed this blog for any solid amount of time, or followed me on Twitter or Facebook, you know that I’m a rather large endorser of understanding and acceptance… the idea that those with Autism can be better served by taking the time to understand them and the spectrum of Autism itself.

Early on, as I tried to piece together all of my thoughts and ideas into this “Understanding and Acceptance” campaign that has really taken off, I began to realize that there is an inherent danger in trying to “normalize” Autism too much.

Different is not special

The danger is this… different doesn’t get insurance coverage. Different doesn’t get sensory friendly movie times. Different doesn’t get services until they’re 18, much less into their adult years.

I recently wrote about the pitfalls in defining Autism which touched on this, as some parents tried to persuade me that “disorder” was too negative to use and that we should find a kinder word.

It really bothered me that these parents were essentially hindering their own chances at getting the help they so desperately needed.

Backlash against PBS and Autism Now

I’ve been reading on Twitter how some people are quite upset at the statements made during the six part series and understandably so, some statements were a tad harsh.

But at the same time, we’re trying to get the world to wake up, stand up and take notice. Not just of how great people are even though they have Autism, but also, of just how hard it can be.

Let’s be honest, a 6 part series on Autism that paints everyone as a savant, or perfectly capable independent functional part of society… won’t do much to raise proper awareness and certainly won’t go very far in helping us parents explain to other people in the grocery store why our child is having a meltdown.

It might not have painted a very pretty picture, but it wasn’t a false picture either. It just wasn’t “all encompassing” of the entire spectrum.

The Talk and Holly Robinson Peete

The Talk did a wonderful series on Autism itself, a 4 part series, airing on each Friday of the month of April. This was a very real and very honest look at Autism as well but it painted it in a nicer picture… certainly not as dark and dreary anyway.

I haven’t found much of a backlash about it, no one seemed to be upset. Which is kind of funny I guess, because I half expected that perhaps folks with severely low functioning children might.

But those people probably just felt more left out than anything, nothing really to get furious about and certainly not worth writing articles and filling up Twitter time lines about.

Personally, I like to think of The Talk’s series as a nice Yin to PBS’s Yang… if one series can’t possibly cover all sides of the Autism story completely on it’s own, then why can’t two series split the task?

The Whitehouse calls it combat

Now, if the PBS series had upset you, then how do you feel about the Whitehouse’s plan to reauthorize the “Combatting Autism Act”? Is it really war they think they’re heading into?

The legislation, first passed in 2006, tremendously expanded federal funding for autism, allocating millions of dollars to improve diagnosis, treatment and research of autism spectrum disorders.

Really, that doesn’t sound so bad… so as a suggestion to President Obama, consider changing it’s name. Please.

Conclusion

Parents and even those with Autism that are higher functioning, Aspergers for example, are trying to fast and too hard to push passed understanding and going straight into acceptance.

There’s a very real danger in doing that… those laws won’t be reauthorized, the insurance agencies will not cover any therapies or treatments and there will be no more services out there for you.

I’m not saying that there is not a need for acceptance, there is. More of it… lots more of it. However, it has to be done properly and in due course. First, there needs to be understanding.

Understanding is what makes the system work for you, not against you. People need to be aware of the stereotypes, people need to be aware of the really bad stories… because as much as we might not like how bad of a “picture it paints”, it’s not untrue.

We can’t hide away the bad stuff in an effort to force everyone to accept people with Autism as just a little different. That simply will not work.

Don’t try to call it something else. It’s a disorder. It really is, even if it sounds negative. Don’t try to hide away the stereo types of those not as fortunate as yourself…. those people need to be seen and heard, even if it’s not an accurate representation of what is in your life.

My son, Cameron, is doing just fine and I have no reason to doubt his future at all. But I’ll never sugar coat Autism just so that people will have a warmer and fuzzier feeling about it. No, what he has is a disorder… because so long as I believe it and everyone else believes it, the help that we need will be there.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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12 Responses to The problem with the expression “Different, Not Less”

  1. Evelyn Doucette April 27, 2011 at 12:22 pm #

    I think people react against the Newshour pieces (which had its good moments) when the word “cruel” or other like words are used. I have an 11 year old that has autism, and someday he will be watching and listening to these programs and i don’t ever want him to think those words apply to him. I don’t care what other people think, but i don’t want him to think he is less than because of who he is. That is why i typically have negative reactions against programs like this.
    Also, if only 7 of the hundreds of students can be mainstreamed than the school is not doing it right. My son has been mainstreamed since halfway through kindergarten (he had a severe receptive and expressive language disorder at the time)with a learning disability and he has done very well. He is now in 6th grade in a regular middle school(with resource help). The program in this regard gave people no hope.

  2. Tina April 27, 2011 at 1:31 pm #

    i agree with evelyn and you. I just don’t want my son to think he is less because he has challenges. I do agree that we need to be careful what we wish for and remember that each child or adult with ASD is different from the next. They all face different challenges and issues. What may work for one person may not work for the next. That’s what everyone seems to forget.

  3. BubblesMakeHimSmile.com April 27, 2011 at 6:49 pm #

    You don’t mention the problem with the expression of “different, not less” like the title of this article suggests, nor do I understand where you were going with your ‘different doesn’t get insurance coverage’ argument. That being said I am assuming the point of this write up is to emphasize, as always, how necessary it is for the world to accept and understand autism.

    There is no right or wrong, there is no good or bad answers. Autism is so many different things to different people and it doesn’t help that there are no two people alike who have autism. I guess the fact remains, ya can’t please everyone.

  4. Stuart Duncan April 27, 2011 at 6:58 pm #

    The problem is that people take an expression like “different, not less” and say it enough that it goes to a whole new level, where we’re not supposed to think about Autism as a disorder any longer, rather, just being different.

    But being different doesn’t get your therapy or medication covered by insurance. Having a disorder does, or at least, it should and insurance agencies and governments are coming around to that.

    We can’t hope to have people accept Autism for the disorder that it is if we sugar coat it with nicer names, like simply being different. That’s more a ploy of pulling the wool over the people’s eyes rather than having them accept the truth.

    Yes, some people with Autism simply are different.. and that’s great. However some people are not and they need the support and services that can only come by having people understand that this disorder needs proper funding, research, support and therapies.

    On one hand, we complain that there’s no services or support for those with Autism once they become an adult but then we tell people that they don’t have a disorder, they’re just different.

    That must be very confusing to someone that doesn’t understand Autism.

  5. outoutout April 27, 2011 at 8:22 pm #

    You know, I think it’s one thing to want to change the dialogue within the autism community and quite another to suggest that the medical diagnosis be declassified as a ‘disorder’. If there are people seriously advocating for the latter, I propose they are in the *extreme* minority. Most people are not stupid; we know that terminology matters when it comes to getting services. I maintain that it shouldn’t be that way – that even “different” ought to merit accommodations needed – but, unfortunately, that’s the way it is at the moment.

    Personally, I see ‘understanding’ and ‘acceptance’ as two related but non-linear processes. ‘Understanding’ is about educating the community at large; ‘acceptance’ is about educating the community within. ‘Acceptance’ is also a natural reaction to the once-prevailing attitude that people like me are broken, diseased, need a cure, and do not deserve to have a say in our own affairs.

    Let me rephrase that. Those of us who fight for acceptance are not all about sugarcoating autism as a happy-clappy difference. We’re not advocating that the severely-affected folks be hidden away as if it were some sort of inconvenient truth. It’s about being included and being represented. It’s about changing the dialogue WITHIN the autism community (not the community at large) to one of embrace rather than aversion. I know, I know, some people aren’t quite at the point of being able to embrace autism… but we’re getting there.

    People weren’t upset with the PBS NewsHour series because it presented the very real hardships of autism. People were upset because it claimed to be comprehensive look at autism and yet only presented only one side of the story. People were especially upset at Robert MacNeil’s comments that autism robs us of “what makes us most human”.

    And there’s merit in presenting the higher end of the spectrum as well. Before the last decade, “autism” was pretty much synonymous with Rain Man. People like me, who had significant difficulties but did not exhibit traits like being non-verbal, rocking in the corner, self-injury, etc etc were dismissed as “badly behaved” with “bad parents”. You can read stories all over the Internet about parents who were dismissed and belittled by doctors. You can read stories about adults who were written off as unfeeling jerks. Thankfully, with better understanding, that is happening much less nowadays.

    So…yeah, it’s about being inclusive, not supressing one side or another.

  6. BubblesMakeHimSmile.com April 27, 2011 at 8:52 pm #

    I don’t think people are walking around using the term “different, not less” to sugar coat a diagnosis. When I hear the term “different, not less” I look at it as a person may be different in whatever context you want to refer to, but they are no less of a human than me. I get what you’re saying I just can’t imagine it’s to that extreme.

    • Armando May 30, 2012 at 4:09 pm #

      I am a 28yr. old mother of a 7yr. old son and i coludn’t even begin to understand what u or your family are going through. I don’t know anything about´╗┐ autistic people, but i do know a lot about unconditional love and that’s what i see when i watch this video. You and your family REALLY are the meaning of family. Not to mention the fact that even though he has autistic qualitys he’s very handson. I hope u all know that your family is a strong family.VA:F [1.9.15_1155]please wait…VA:F [1.9.15_1155](from 0 votes)

  7. Stuart Duncan April 27, 2011 at 9:15 pm #

    Oh but they are. In fact, I’m told on a daily basis to not call it a disorder. Even when using the term “Autism Spectrum Disorder” which is it’s official name.

    Many of my posts are written just because they’re my thoughts but some, such as this, are in response to what I talk to people about every day.

    Every single day I hear from people that are upset because I’m too positive and Autism is “evil” and a “cancer”… because their children are non verbal. And every single day I hear from people that tell me that I shouldn’t be calling it “derogatory” terms such as disorder, or be refering to “severity” or “low functioning”.

    I have twitter, 2 fb fan pages, this blog is in syndication… I have a lot of correspondence with people that truly only want what is best for their children, themselves, the community and so forth.

    What I’m trying to do, with this post, is to speak specifically to those that tell me to change the words I use, or the tone I use, to make Autism feel like it’s a good thing, it’s just a difference.

    I try to respond on facebook or twitter but with limited characters, I likely just come off as rude and so I use my blog to take the time to say more and explain why I feel the way I do.

    My son is truly amazing to me, a one of a kind original that can never be replaced or duplicated.. he’s perfect. I feel just like those parents who tell me that Autism is just a difference but they get upset with me for using words they disagree with.

    outoutout, you’re exactly right. We, and I truly wish the media would too, be inclusive of all aspects, good and bad. No more sugar coating and no more dark and dreary “news” reports.

    To everyone else, if you get mad at me for comparing Autism to a rainbow, or feeling great about my son, or if you get mad at me because I feel Autism is a disorder that makes life very hard for some families… please take the time to read my reasons for doing so. I take no sides. I don’t try to appease any one person or any one group.

    All I can be is honest with myself and with you. I’ll keep calling it a disorder because that’s what it is… and I’ll keep using the “Different, Not Less” phrase because I love it.

  8. BubblesMakeHimSmile.com April 27, 2011 at 9:34 pm #

    Just blown away at the amount of ignorance that can be associated with autism. Shocked really that people argue or fight about it, but like I said, you can’t please everyone.

    But you keep doing what you’re doing and don’t let anyone say elsewise. Define autism how you see it. Ignore the ignorance and embrace the relevance. I just had no idea that people could be so, so uneducated for lack of an appropriate word. Thanks for replying!

  9. Suzanne April 28, 2011 at 12:25 am #

    Thank you for this. I have been working on writing about my son’s Asperger’s to help those around us understand better what life is like. So many people downplay the part that Autism has in our lives and imply that it’s not that big of a deal. After I finished writing I worried that I was being too negative. You are right. People need to know what Autism is really like before they can truly accept it and those who are effected by it. Though I am trying to separate my feelings about Autism and my feelings for my son as I portray our lives.
    As for the News Hour broadcast I think it did just what it set out to do. Show that something more needs to be done.
    No, my son is not less- I will make sure he always knows that- but he is different and needs a lot of extra help right now, maybe for a long time. I hope he will get it!

  10. Gina @ Special Happens April 30, 2011 at 12:36 pm #

    So.

    I guess in many ways, I agree with the statement…”but they are no less of a human than me” by BubblesMakeHimLaugh above. That’s what that phrase “Different not less” means to me. To tell others that our children, or any person affected by any disorder INCLUDING Autism is still a person. So, I personally don’t take offense to that wording at all. It seems to meant to convey an alternative to one aspect of the way some may view those with Autism.

    What does offend me is when people talk about Autism as a disease. Really? A disease? Because if you get blood from a person with Autism, shake our children’s hands or my son sneezes on you, you’ll get “it”? Nope. Autism is a disorder. That, in my mind, is that!

    Thanks Stuart!

  11. Bryan May 23, 2011 at 10:46 pm #

    Autism is no more inherently a disorder than is neatness. It’s when neatness becomes so extreme that it interferes with life that it’s a disorder. Some people get off on labeling their children as inherently damaged goods. I don’t.

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