Tuesday, January 27, 2009

My Son's Name Is Conor, He Is NOT An Autistic

Conor is my son.

He is a boy, a young man, who will soon turn 13. He is affectionate, fun loving and has a great sense of humor. He loves being outdoors and experiencing all of it - including the snow of which we get a fair bit in this part of the world. Like many other Canadian kids Conor loves to get right down in the snow and feel it's coolness. He likes to play with balloons and he stims, usually with straws. Conor loves to play on the computer, PBS KIDS, Dr. Seuss Youtube videos and above all O Canada videos. Last year he had a perfect school attendance record. Because he loves school and because he is a healthy, well cared for boy.

Conor has Autistic Disorder, assessed with profound developmental delays. He occasionally injures himself through biting or hitting his head with his fists in frustration. Sometimes he grabs others by the hair or pinches their faces hard. He is not trying to hurt anyone but it happens. Conor can not safely leave home unattended. At 13 we know he will not live independently. After I am dead he will be cared for by strangers. Conor has Autistic Disorder, a neurological disorder, a fact forgotten by self promoting "auties" and "autistics" who glorify neurological disorders.

I don't know what an "autistic" is. I know it is a label used by some persons who have Pervasive Developmental Disorders as a means of imposing their views of themselves and their disorders on families, parents and children they don't know, and with whom they have very little in common. It is a label based on their own self images.

Conor is a boy, a young man with a neurological disorder, but he is much more than his autistic disorder. He is my son, he is a great joy in my life, and the lives of others who know, help and care for him and I will not allow those who do not know him to reduce him to a label of their making and design.

Conor is not an "autistic".

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Anonymous said...

He sounds a lovely lad. Personally I don't mind if you say my older lad Tom is autistic or has autism. He loves school as well, at the moment he is very excited about "the blue pole" that he plays on at playtime. He goes to a special school that has communication and interaction as one of its focuses. He also loves going on the computer, we've set up his own part on the computer so he can link straight to the Cbeebies sites. He likes to grab and play with my hair and face and climb onto my shoulders and grab me by the neck. There is no wish to hurt when he does this. He is very lively and giggly. He loves counting and drawing, Teletubbies, Something Special and Night Garden.

Marius Filip said...

I do not have a problem with saying that my son is autistic.

There are diabetic people, there are cardiac people, there are autistic people and many other xxx-ic people; autism is just a debilitating condition among many others (more or less severe than autism).

I do believe the problem is not with the label in itself, but with the meanings we attach to it - such as the glorification of a disability that you mentioned about.

jypsy said...

Reminds me of something I read this morning here: "This piece started as a comment on someone elses blog. They recognised the word handicap represents a problem for some people but sought to find a way to make it acceptable to themselves. I’m not really bothered about the language people choose for themselves indeed a language rule that i work by is to respect the language that people use about themselves." (My emphasis)

I have no problem respecting your wishes and should I ever address Conor as an autistic when talking specifically about him I hope you'll gently correct me.

Claire said...

What I interpret Harold as saying (and please correct me Harold, if I am wrong), is that there are those who would equate autism with a personality trait like being a "morning person"...Hi, I'm an autie! Oh yeah? Well, I'm a morning person! When this happens, society decides it is no longer an issue and therefore refuses to treat it. A diagnosis leads to treatment, research into cure and prevention, and accommodation where cure and prevention are not possible (or yet available). Imagine if we treated spina bifida as "just another wonderful expression of the spine!!" Instead, spina bifida is a diagnosis..a problem..and so it was discovered that folic acid supplementation during pregnancy significantly reduced the incidence of s.b. What we must do is celebrate people...not disability.

Chrissy said...

I have started resenting the labels myself. Lately, the term "special" has been bugging me a lot. Our children are "spectacular" in many more ways than they are "special".
Thank you for this post.

Anonymous said...

I never say that I have "an autistic daughter" any more myself. I say I have a daughter with autism. She is first and foremost a daughter. Autism is a condition she has.

Just the same, I would never say "a Down Syndrome Child" or "a diabetes child". I would say "a child with Down Syndrome" or "a child with diabetes". Autism is no different, IMNSHO

coc said...

Language is important, but the intent behind the language is also important.

There is the Matt Dillon line from "There's Something About Mary" when talking about the 'exceptional' people Mary works with:

"Exceptional my ass!"

No matter what terms are used they can be used cruelly or ignorantly. There's a Charity in Ireland called Enable Ireland which was formerly called Cerebral Palsy Ireland. A great positive move you'd all think. Except that school childen have been heard jokingly referring to it as Unable Ireland.

Likewise sometimes words intended as cruel are reclaimed by those abused by them. Queer. Nigger. The intent of ND types in using Autistic as a badge of honour might thus be laudable if it was an act of defiance against uncaring authorities who deny much needed supports and services, but use as a glorification of a serious disability leaves a lot to be desired IMHO.

Anonymous said...

Hi Harold,

I agree with the dislike of the label. For me it appears to objectify my son and the use of the label is a convenient way for the ignorant to dehumanize my son. I have seen this even with people that work with my son (correction – worked [past tense, I fired these people]). Intellectual and developmental disabilities are largely not well understood by the masses and the label gives comfort to the well meaning hypocrite so he/she can say things like (I am sure we have all seen such) “He is autistic, what a pity.” I never hear such things about my diabetic friend but I hear them about my son. Our social stated moral of acceptance is a hallow joke and labels perpetuate this not so funny reality.

Marni Wachs said...

Here's one I'm considering:

This is my son. He is a child with a vaccine injury.

jypsy said...

I share Chrissy's issue with "special".
As to "intent" - I believe the intent is the same behind my saying "Alex is autistic" and Mr. Doherty saying" Conor has autism".
I do *not* use "autistic" as a "glorification".
I know of a good number of people with Down Syndrome (and their parents) who prefer "Joe is Down(s) Syndrome", I am Downs" "I'm a downsy", I have a downsy son" etc.
For some here it's ok to have a "diabetic friend", for others it should be a "friend with diabetes".
I think we should respect people's individual choices about how they want to be referred to. (As I said above)
If "Benjamin" prefers "Ben" and hates "Benny", try to remember to call him Ben and try not to call him Benny. If we accidently call him Benny because that is how we are used to referring to a dear friend, I don't think intent should be read into that. If you just can't bring yourself to call him Ben, his preference, use the term you're comfortable with that you know won't offend him (Benjamin). If you feel you have to call him Benny because you prefer it, even knowing how much he hates it, you're showing a great lack of respect.

farmwifetwo said...

I HATE that word. It's my #1 pet peeve. It dehumanizes. We are not label's, we are people. I don't know why we live in a society that has to label people. Is it a way of feeling better about yourself?? "Ha!Ha! Joey over there is autistic, diabetic, a cancer survivor (pick your label) so therefore I'm better than he is."

Or do people require labels so they feel like they are part of some sort of club.

Everytime someone says "Oh, your son is autistic", I correct them and say "no, he HAS autism".


lexie said...

I say my son J has autism he is a child first and foremost. He is the light of our lives, he does have severe autism and shows his love to me by touching my neck when he comes home from school and anywhere else that i pick him up from i.e. afterschool club, toy library. That shows me actions are louder than words!