Friday, February 24, 2017

Does My Son Have Autism Or Is He Autistic?

I ran into an unintentional conversation online the other day. It got me thinking a lot, particularly about the words we use on a regular basis. While I stayed out of this particular online conversation, as I sensed a troll lurking in the background, it was interesting to watch the comments. Here's how it began.

Someone posted an article or link of some kind with a comment about terminology and mental illness. The comment was something along the lines of referring to people as having a certain disorder, not being a certain disorder (e.g. she has bi-polar versus she is bi-polar). The argument being made was that people with medical illnesses are referred to as having a certain diagnosis, not being a certain diagnosis (e.g. he has cancer versus he is cancer).

I made a comment on the post about my youngest son having a diagnosis of autism and that I try very hard to tell people he HAS autism while trying not to say he is autistic. I personally do it this way because from my experience, it is easier for people to see the boy, the person he is, if I say he has autism instead of saying he's autistic. He is SO much more than his diagnosis and for me, I prefer saying it that way.

Someone made a comment to my post. Here is what was said:

"Please forgive my ignorance, but what's the difference? If he HAS autism, he IS autistic. They mean the same thing. Using the alternative phrase takes away nothing from him unless you let it. 

That's like claiming, "I predominantly use my left hand," is different from saying, "I am left handed."

I weep over the strength people give words for no reason whatsoever than to find things to complain about." 

OK, for those of you who know me in real life, it took A LOT for me not to answer right away. I took some time to think about what this person wrote (and cool down a bit, let's be honest here). As I was thinking, some other comments came in from others. Many of them were from people with autism and they all disagreed about how to phrase it. Some said they refer to themselves as having autism, others said they refer to themselves as being autistic.

If the autism community had told me there was a consensus about the terminology, I would have gone with what people prefer. But there was no agreement. So I went back to thinking about the original comment. I was having trouble figuring out how to verbalize my thoughts on this, so I did not say anything, as I did not want to get wrapped up in an argument with someone that does not know me or my son.

Anyway, here are my thoughts (and you are free to disagree with me). First of all, to address the broader issue that was brought up, words DO matter and words DO have power. I think a good majority of people know that. Yes, we can control our reactions to words. If you call me a bad name, it will probably hurt my feelings (not for very long, but it will for a second). Even if the word you use is not mean, the intent behind your words is hurtful and that will probably bother me longer. 

Words are our way of communicating, of conveying messages, of sharing memories and emotions, of building relationships. Words are also our way of hurting one another, of expressing negativity, of conveying the intent of our messages, of tearing people apart. Our words are very important. In this regard, I think I can agree to disagree with the person about giving strength to words (and for the record, I was NOT complaining as was suggested). Words can hurt and heal, and I think we all need to be cognizant of that.

Back to the autism versus autistic debate. Having autism, to me, sounds like it is something my son has but the phrase still allows him to be so much more. Being autistic makes it sound, to me, like it is referring to his behavior, that he is autistic all the time. And yes, technically he is autistic all the time because yes, he does have autism so it is with him all the time. But when he is playing Power Rangers with his older brother, or telling me how much he loves our pets (he LOVES animals), or he is singing me a song, I do not see his diagnosis, I see HIM. To me, referring to his diagnosis as having autism allows for HIM to be seen by others. Being autistic sounds to me like he is tied to it and his behavior is tied to it all the time, and I do not feel like that describes him best.

I can honestly say that I would probably have a different opinion on this if he did not function as highly as he does. I also think my opinion would be different if I had autism myself. But neither of those is true, so I can only make decisions based on my experiences. If my son gets older and he tells me he wants to be referred to as being autistic, I will certainly honor his request. It is his choice. When he's old enough, I'll even sit him down and explain to him that he can choose. I want him to understand that he does not have to do what I did, he can choose whatever term he feels reflects him best. And I will tell him that his choice is flexible, that he can change his mind. 

All the while I have to remember that regardless of the term we use, regardless of the term he chooses, it's all OK. 

1 comment:

  1. I am the Executive Director of Voice of Care ( ) and we train people with the Church to nuture people with disabilities. I use an article by Kathy Snow called People First Language. I teach that you use a term about a disability as a description because it is just one aspect of that person. I wear glasses vs being an eye glass wearer. People with disabilities have so much to offer and to enrich our lives if we look beyond the disability. So yes, a person may happen to have autism, but he also happens to have brown hair or a beautiful voice or a kind heart!