Green in a Blue World
A “dash of autism” is “how much” one expert told Deanna Mackey that her son as she writes yesterday in Tales of a Working Mother: A is for Autism. Mackey’s son has Asperger’s Syndrome:
he’s always been a little quirky and that doesn’t go unnoticed, even by him. When he was five he told me that he knows he’s different than everyone else in his kindergarten class. He explained it like this: “Mom, it’s like everyone else’s favorite color is blue and mine is green. They all like blue, but I like green. I see everything through the color green.” I knew exactly what he meant because for the past four years I’ve watched him try to fit his green-loving self into a blue world.
Asperger’s is often referred to as “high-functioning” and even “mild” autism (just a dash……). Mackey writes as honestly and lovingly of her son’s struggles with temper tantrums and behavior problems as she does of his being a Star Wars expert at the age of 4; her article resonated with me in light of recent discussions here (see yesterday’s To Hell and Back and the ongoing debate on David Kirby and Autism Speaks about what some perceive as a huge divide between (for instance) someone with AS who works, blogs, lives independently and a non-verbal “severely” autistic child. I think it is significant that the title of Mackey’s article is not “A is for Asperger’s” but “A is for Autism”: Why is so much energy spent on emphasizing the differences among autistic persons (on the particular “shades of green” that one might be), over and above what is similar and in common?
Forest green, kelly green, sea green, light green, dark green: Cross out the adjectives and the colors is the same.
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POSTED IN: Asperger's Syndrome, Diagnosis, Parenting
18 opinions for Green in a Blue World
julie
Mar 29, 2007 at 1:48 pm
Her article was true and so touching I also find myself wanting to know everything I can so that I can help Rebekah, but at the same time to not want it her inabilitie to be what defines her, but her abilities. If all parents with any autistic child anywhere on the spectrum could come together and support each other in a positive way I think we could accomplish great change in the perceptions of what autism is and what it is like to live with it in your home.
Rochelle
Mar 29, 2007 at 4:43 pm
Thank you so much for sharing this, Kristina. I’ll admit that passionlessDrone’s comment from “Autism is an epidemic, New Jersey is toxic, and other autism myths” stuck with me all day. His (or her?) comment seemed to indicate that because my son is verbal and has different difficulties, somehow Tobey doesn’t belong to the “autism club.” I suppose it was only a matter of time, considering the different abilities that all of our children have.
I think that these “dashes of autism” make it more difficult to get proper diagnoses and adequate services. I thought Tobey was autistic at 3 (although always knew he was “quirky”) but couldn’t get a diagnosis until he was 6. Doctor after doctor said that he couldn’t be autistic because he was so verbal–”autistic children don’t typically talk as much as Tobey,” according to one doctor.
Still, limiting the diagnostic criteria of autism to one characteristic doesn’t adequately convey the spectrum of the disorder, even if that characteristic (e.g., verbal abilities) is so prevalent among individuals with autism. So, thanks for sharing this with us…
Club 166
Mar 29, 2007 at 5:31 pm
Thanks, Kristina. Great post.
Why many people get so hung up on verbal ability as being the main determinant of whether or not a particular individual is autistic is beyond me.
Skylar
Mar 29, 2007 at 8:30 pm
All are the same? Are you joking? Yes, they are all classified under the Autism Spectrum Disorder, but there is a noticeable difference between Rett’s Syndrome, Autism, Asperger’s, Down Syndrome, etc.. all are unique in their own way. Your methodology of classifying them all into the same thing is completely wrong. I suggest you rethink your theories, and your word choice, before preaching about something you obviously know little of.
Kristina Chew, PhD
Mar 29, 2007 at 8:35 pm
Thanks, Skylar. It was an analogy (I refer to the last sentence) and thus not entirely accurate; I was trying to refer to the commonalities among the conditions that you mention.
Harold L Doherty
Mar 29, 2007 at 9:16 pm
Ms Chew
I often enjoy your blog even though I do not share your viewpoints very often. I find it difficult though to understand how someone who is involved with language as much as you are with your professional background could not understand how important language is to all human beings. Of course the inability of one person to understand language at its most basic levels distinguishes that person from others who are highly skilled in language. It is one of our most basic and important skills as human beings. It affects all aspects of our life from quality of life to duration of life.
A lack of basic understanding of language may in many cases also accompany a cognitive disability, a lack of understanding of the dangers posed by every day phenomenon such as glass, water, automobiles, fire or heat.
My son lives with these serious and dangerous deficits. It is extremely frustrating to read complex monologues by high functioning highly linguistic persons who are somewhere on the autism spectrum pretend to speak for my son and other profoundly autistic persons and try to argue that as parents we should not try to “change them” because their “autism is a part of who they are”.
Although I appreciate your civility there are times such as this when I find your lack of understanding bewildering. I wish you showed as much concern for profoundly autistic children like my son as you do for appeasing the sensitivities of much higher functioning autistic persons.
Kristina Chew, PhD
Mar 29, 2007 at 9:39 pm
Thanks for your observations, as always, Mr. Doherty. As you know, my son is as “profoundly” autistic as your son.
I more than appreciate your noting my interest in language, which extends to communication more generally. From that interest has come an additional interest in non-verbal forms of communication such as my son uses (and that I have learned as a result of spending so much time with him). It is clear that his understanding of receptive language far exceeds his use of expressive language.
On the matter of cars, my son has learned to stay on the sidewalk and the side of the road as a result of learning to ride bikes with my husband. Whether he understands the full dangers of cars is not clear to me. But he has been learning the behavior of walking on the sidewalk or the side of the road, thanks to ABA. I prefer plastic for dishes in our house; we have no fireplace; Charlie is a capable swimmer. I am working on teaching him various behaviors (if I may put it that way) around the hot stove. He is certainly cognitively disabled; as I mention often, he has learned to several sight words (on flashcards, in a carefully controlled setting); he does not seem to have all of his letters or numbers down all of the time.
Harold L Doherty
Mar 29, 2007 at 10:37 pm
I understand that there can be non-verbal language. Especially if one does not have an innate grasp of verbal language. It is still a deficit though. And my point was that the lack of basic understanding of spoken language is a very clear demarcations between lower functioning autistic persons and those who post to this and other internet sites.
BTW The adjective “profoundly” autistic was used in a formal assessment by my son’s paediatrician.
Kristina Chew, PhD
Mar 29, 2007 at 10:42 pm
Thanks for the clarifications—Charlie’s paperwork attests to numerous “impairments” and “deficits.” I just cannot be sure of what he exactly understands and does not regarding spoken language—-so often he does not seem to understand something when it is said, and then we realize he most certainly did, after an interval (of 15 minutes; of a few days).
Rochelle
Mar 29, 2007 at 10:53 pm
I think you make a great point, Kristina, on the nuances that come with verbal or language ability. One’s ability to understand language, even specific words, does not necessarily mean one can use that same language. Likewise, the ability to speak in certain contexts doesn’t necessarily preclude one from inabilities to speak or communicate in others.
While my son might be able to use verbal language to indicate his needs and wants, that doesn’t mean it’s comprehensive. Tobey repeats often from television shows and movies, so while he’s speaking there are times that it’s not necessarily the most “useful” (as far as meaning goes) to convey his needs. Likewise, Tobey’s echolalia extends beyond just movies so that he repeats questions rather than answering them. While “verbally” speaking, the difficulties with constructing meaning still exist and create challenges for the day-to-day living.
I’m also a little confused by commenters who think that angry, hostile comments to parents some how makes one’s case more convincing. Perhaps because I’ve only been following the blog for 7 months now, but I don’t understand the blatant hostility that sometimes goes on here. We all use personal experiences to make our points. We reflect on our children’s or person’s experiences often to illustrate our need for reflection, celebration, frustration, exhaustion. And, everyone’s experiences differ. That’s the nature of a spectrum disorder. Hell, all of our experiences differ without any kind of spectrum. Our lives differ. How is one experience “better” or “worse,” more or less “significant” than another’s, more or less “challenging” than another’s? It’s not like this is a contest. I’m amazed at the oneupmanship that sometimes goes on. It’s just infuriately disgusting the hostility some people exhibit in an online forum because they find themselves more anonymous behind a computer screen. (Hell, maybe I’m no different. If face-to-face, I, too, would probably keep these same sentiments to myself.)
There are posters on this blog who I *refuse* to engage in any sort of dialogue with because I’m not willing to open myself up to someone so obviously hostile and dismissive. Someone who’s nothing more than an online bully. I just don’t get it, I suppose. Maybe I’m wrong because I’m still new to the “club”–a club’s membership I’m often denied. And, a person who’s experiences with a child on the spectrum need to be “appeased” (because somehow those of us whose experiences differ need nothing more than the kind “bone” thrown to us by some).
So, as someone who’s sensibilities you’ve been kind enough to appease, thanks. Like you noted in an earlier blog, I, too, have learned much on this blog about how similar our children’s needs are, despite their many differences. We’re all on the same team–I think sometimes that’s just forgotten in the oneupmanship of whose child is “more autistic.”
I hope you have a nice evening…
julie
Mar 30, 2007 at 7:49 am
I have to agree with Rochelle. I have only been coming to this site for a month and have learned soo much. I also feel that sence of hostility when talking to some parents of autistic children who are non verbal. My daughter is considered high functioning and can speak but at age 5 we were told if she actually comprehended 10 percent of what was being said to her the evalater would have been shocked. Each person and child on the spectrum posses their own set of challenges and joys in life and for their families. I also have felt that other parents at times look at my daughter and say she is not really autistic and have felt excluded from support group and such because of that. I too thank you Kristina for this site and including everyone who is on the spectrum in your discussions It has been wonderful for me to finally feel like I fit in with people who for the most part do not look down on me because my daughter can speak. no child is more or less autistic just different but we are all unique individuals autistic or not.
Rochelle
Mar 30, 2007 at 8:42 am
Welcome to the forum, Julie, and it’s always comforting to find someone who’s facing similar challenges. I think non-verbal autistic individuals face challenges that verbal autistic individuals do not. However, there are challenges that verbal autistic individuals face that non-verbal autistics individuals do not. Still we all love our children and want the best for them regardless of their position on the spectrum. All of our struggles are no less significant or meaningful.
It’s nice to meet you, Julie…
Marcie
Mar 30, 2007 at 9:02 am
I definitely agree with the idea of just because you can speak, it doesn’t mean that you’re speaking the same language as others. When others are under the impression that you are speaking the same language - and you are not - it causes difficulties in getting them to understand that they are not understanding you. Which is why I spent so much time talking to other autistic people. They understand my language. But what I find really interesting is that autistics themselves (at least those I’ve read about) don’t wish to make a huge distinction between the people on the spectrum, except to the extent that everyone is an individual. We know very well the similarities of what we experience, even if it’s expressed differently.
Chris
Mar 30, 2007 at 2:48 pm
I see and feal the frustration and the debate between parents and the comunnity of autism, verbal-and non-verbal. For some reason when the dissability becomes visual, stemming and non-verbal there is a understanding, compasion, and almost a forgivness, or pity from the public. Also treatments and help seems to be more abundant, even though you have to juggle and jump hoops to find them. In my experience when the child is BECOMES verbal, I get a different understanding. 1. I got, he is talking he is not so bad. 2. When he is tantrumming I get the look, and comment, that he needs a good spank. 3. When I went for help, I got, I do not think he will get services because he can appear to be normal. MY son in the past 1 1/2 has gone threw the gammit of symptoms. Yes he is verbal, but that did not help him when he went outside while reciting 101 dalmations and climbed to the top of a tree. I could hear him(+) saying do not worry puppies I will save you. But I could not get him to respond to me. I had to pray,(while calling the firedepartment, that he would not fall 100+feet high)that he would fast forward the movie, and get to the part where he saves the puppies and climbs down safely. He did climb down and walked right past me, still reciting his movie. He escaped out of a locked house, through the cellar out the cat door, and was found naked in a local store. He was talking the entire time, but yet he could not tell anyone his name or answer a direct question. I WAS TOLD, I COULD LOOSE HIM-FROM PEOPLE.–I could not believe this, I could not get help for him–but now that his symptoms have put his life in danger, I could loose him. I started to get help, even family started to see and have a understanding, of what life with Aidan is like. He is verbal HURRAY– but he needs alot of help. He needs constant supervision, he had no sense of danger. I sometimes want to explain to people when they say Hi to him, nad he yells NO! to there face. Or he screams in the store because I will not let him carry a huge watermellon through the store. So I give in and let him, to avoid the melt down and then I get flack for letting him, becasue he will not give it to the cashier to weigh, and screams when they try and take it. Believe me not everyone keeps there judgmental comments to themselves. MY 5 year old has even turned to the lady and said, “It’s ok he is my brother, he is autistic”. That lady shut up! We all need help with our children, we all need understanding for the families, and where there children are in there reabilition, and therapies. I am greatful that we have been so succesfull with my son so far. After detoxing him with the mud baths, seemed to make him more aware and checked in. We taught him sign which helped him communicate, we started protien supplements to help build the fats in his brain, so new connections could be made when we did physical therapy to strengthen the right side of his brain. His awareness and commmunications skills haveimproved 100%. He can answere questions and ask them now. He is aware of other people and there pain if they have a booboo. RDI Relationship Development Intervention has helped to build on his awerness and understanding of people adn dangers around him. I would love to have communication with other parents and there therapies. I am only aware of these things, and I see them as being succesful, but I do not know of anyone on the same path. does anyone else work on Right brain rebuilding?
DR CHEW what do you know about this? I am going down the wrong road-
Kristina Chew, PhD
Mar 30, 2007 at 10:45 pm
Chris, I don’t mean to be trivial but my son also has been known to carry a watermelon through the store……I’m afraid I don’t know much about right brain rebuilding. You may have mentioned this in an earlier comment—have you done ABA, just to help him with things like handing the watermelon to the clerk without screaming? With Charlie, we have not so much taught him directly about dangers (cars in the street) as taught him what to do to avoid danger (walk on the sidewalk). I don’t know, as I wrote above, if he understands about these dangers, but now we can go on walks that are peaceful instead of anxiety-filled, and he seems to be becoming much more aware of his surroundings—of the trees and houses and other people. He turns his head when cars go by and sometimes watches them as they come closer to us.
The RDI sounds like it is helping with his awareness, too—-serious aerobic exercise like bike-riding and swimming has also helped Charlie. And learning to play the piano—-something about him learning to make music in a more structured fashion is helping him in ways that I have yet to quite be able to explain; he sings a lot, but when he plays the piano, it is him learning to coordinate hands, eyes, ears, and, yes, his brain. Hope this is somewhat helpful—-
Phil Schwarz
Mar 31, 2007 at 1:28 pm
Julie wrote:
“My daughter is considered high functioning and can speak but at age 5 we were told if she actually comprehended 10 percent of what was being said to her the evalater would have been shocked.”
Time for a new evaluator — pronto.
Chris
Mar 31, 2007 at 10:10 pm
No we have not done, aba, we are only being told about rdi, he is in pre school 1 on 1 for 3 hours each morning, and we hired a recreational therapist for 3 hours 2 days a week at the beginning of the school year. we just got excepted medicaid and he now is getting 20 hours of help. his aid does rdi stuff and play time social stuff, but we have not done anything specific. I have just been his 1/1, and my husband and the girls. We have only done what we could. With our own gut instinked. But like I said it is not like people are falling out of the ski to help us. I feel very lucky to have come across the people we have that are helping us now. I heard Toni Braxton say her son is in 80 hours a week of therapies. I can not imagine, how that is happening, and when he then is able to be a kid and be mothered by her. I also found it frustrating that people all contacted her adn reached out to her to help her son, and the rest of us have to trudge through the politics and feel our way threw drs to get a diagnosis and the right therapies, but how do we know what is the best therapies when they are all so new. I think my son is doing great with what we are doing, but who do I know that aba would not be better.
chris
Go Green
Jul 12, 2007 at 2:08 am
[…] and the meagre photo-taking powers of my cell phone camera—-maybe you can be green (even in a blue world) and still get to eat your guacamole too. ASD, Aspergers, autism, children, colors, Education, […]
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