Wait, Evie is not Autistic?

I have had person first language drilled into my head since Evie started Early Intervention at the age of 6 months or so.  For those of you that don’t know, person first language means that you would say, “Evie has autism” and not, “Evie is Autistic.”  The thought is that you need to separate the Autism from the person.

I didn’t even realize there was a debate about  it within the Autism community.  And honestly, I would cringe when I read or heard someone refer to a person as Autistic because I have been so heavily indoctrinated.  But I’m learning.

You wouldn’t say that a person who has cancer is cancer.  So you shouldn’t say a person who has Autism is Autistic.

But, Autism is not a disease.  And there is a lot of fear mongering involved in linguistically comparing it to a disease–something to be diminished, cured, reduced, fixed.  There is also, not so subtle, shaming in telling someone that Autism doesn’t–shouldn’t define him/her as a person.  That the Autistic person should separate from the very nature of his/her being.

Who is deciding that Autistic people can not identify as Autistic?  Many Autistic adults vehemently insist on being referred to as Autistic.  The Author of  Yes, That Too has devoted several blog posts to her insistence on being called Autistic.  I don’t suggest referring to her as a person with Autism after she has asked to be referred to as Autistic as she is a force to be reckoned with.  She writes thoughtfully and intelligently on a wide variety of topics, has a bachelor’s degree in math and is working on a master’s in math.  And oh yeah, still working on her bachelor’s in Chinese.  And Engineering.  Yet some would have the gall to say she is not what?  Smart enough…capable enough to identify herself as an Autistic person???

I say I am happy.  I say I am human.  I say that I am female.  These are all words that I use to identify myself as a person and to identify with other people. None of these words singularly define me.   Would you ask me to say that I am “a person with femaleness“? Nobody criticizes the use of these words because these words have positive associations associations in our culture.

Autism does not have positive associations with the population at large.  When I was questioning the use of a social therapy that I was not familiar with at our IEP meeting last week, I was told that it was used to work on “the deficits of Autism.”

We look at Autistic people as people with deficits.  That is truly offensive language and discriminatory thinking.  As long as we think of Autistic people as deficient or lacking in…humanity, we make it painstaking for an Autistic person to identify with and embrace a large part of his/her nature.  Stripping Evie of her ability to proudly identify as Autistic would be akin to stripping me of my ability to identify as a woman.

Does being female conjure up images of deficiencies as a person?

The only difficulties that I have as a woman are the ones that our society has dumped on me.  And I say the same is true of Evie as an Autistic person.

Evie is in no way shape or form deficient.  If you think that the facts that she does not have speech or make eye contact often mean she is deficient as a human, then YOU are deficient in acceptance, tolerance, and humanity.

I’ve mentioned that before Evie was born, Autism was pretty much my worst fear for her.  I was taught to fear it in everything I read about this terrible affliction, this Autism, that snatches our kids away and silences them at an alarming and ever increasing rate.

Autism has not snatched my Evie.  It has given me my Evie.  The Evie that I love the heck out of every single ding dong day is wholly and fully and completely and lovably Autistic.  Always Autistic in every single thing that she does as I am always female.  And I have never wished any part of who she is away.  And she is Autistic.  Did I mention that Evie is Autistic?

You can’t take Evie’s Autism away with your language.  And I am as thankful for that as I am outraged that any person would, knowingly, use language to shame, oppress, dismiss and marginalize Evie and her Autistic people.

***Editing to add that while I don’t want to use language in a way that I believe separates Evie from Autism…especially in a way that has a shaming effect, I respect every person’s right to choose how he/she self-identifies.  I should have made this more clear in my original post***

IEP meeting update

We had our final IEP meeting yesterday.  I was really nervous for it as I had all of this new information floating around my head.  And things I needed to say.  And make clear.

And I flopped.   If you know me, you know that public speaking is not my forte.  And even though this isn’t public speaking, there are enough people in the room to make me incredibly nervous.  I could feel my face burning red and I just couldn’t get the right words out.

My mother, a retired special educator, attends every meeting with me.  She told me after that I sounded frustrated with the team.  Ironically, it was probably one of the few times I was not frustrated with the team.  I was frustrated with myself for my giant fail.

The meeting went pretty well.  Her team seemed very receptive–even if they didn’t agree  (which I suspect is true in many cases).  They had a great suggestion for increasing social opportunities, in a fun way, for Evie.

I was a little disappointed that our outside augmentative communication evaluation was “downgraded” to an observation and suggestion session.  Apparently, the agency changed how things were done.  I don’t know exactly what these changes mean but I am trying to keep an open mind and stay positive.  If not, we will find another way to pursue it.

This is a copy of the follow up email that I sent after our IEP meeting.  If anything jumps out at anyone…or if you want to provide any feedback.  I am all ears!

So I wanted to clarify how i am feeling about Evie’s Autism.  I’ve been feeling like this for a couple of years but haven’t really been able to articulate what I am feeling and haven’t really known if my feelings have any validity.  Recently, I’ve been doing a lot more research which has included speaking to many autistic adults–what they have said has lent credibility to my feelings.

I have come to see Autism as a way of being.  And feel that people that are not autistic do not have the right to expect Autistic people to conform to non-autistic cultural norms.  And I have learned that many autistic adults find this expectation offensive and in many cases, physically painful.  The example that I am given most often is eye contact–that eye contact is cultural and can be physically painful for Autistic people to make it.

Evie has disabilities.  I do not consider certain characteristics of autism to be disabilities–for example social behaviors like eye contact, body orientation, etc.  Therefore I don’t want ANY focus of her education at school to be on changing those behaviors which are part of her nature.  I would say that this is a great learning opportunity for neurologically typical students–not everybody behaves the same and learning to coexist with Evie and people like Evie is important.  I am more than willing to give my permission for educators to discuss Evie’s differences with the kids openly.  In fact, I encourage it and welcome them to ask questions they may have about Evie—hopefully to increase understanding and tolerance.

At the same time, Evie does have behaviors that are offensive and dangerous to her peers.  I would like to see these be the things that we focus on changing:  biting, stealing food, invading personal body space, etc.  I fully understand that Evie’s Autism does not give her more rights–just the same rights as everyone else.

Further, it is increasingly important to me that Evie has bodily autonomy.  As we have discussed in the past, I do not want anyone physically forcing her body to do anything unless she is in danger, endangering someone else, violating another person’s space/body, or disrupting the education of others.  I am fine with gently guiding Evie’s body, when she is willing to be gently guided, in other situations.  Like the example of teaching her to zip her coat, pull up her pants, etc.  But I don’t want Evie to be, even gently guided, to conform to neurotypical socially acceptable behavior except if it falls into the cases above–where her behavior is violating the rights of others around her.

I don’t believe that Evie needs to be cured or fixed and would; therefore, like to concentrate her education on areas that help her function with her disabilities.  I hope that makes sense to you.

As we discussed, I want communication to be the major focus of Evie’s day.  I would like everything that doesn’t involve communication or support communication to be secondary to this focus.  I like the 3d object success that you are seeing.  I would like us to explore all mediums of communication including signing, technology, etc as well.  When the iteam shares its findings, will that just be with the school team or can I listen in as well? 

As I mentioned in the IEP meeting, I would love for as much of Evie’s program to be centered around the things that she enjoys or does well–using those things as a jumping off point for skill building.  Certainly, I realize that this might not always be possible. I am also hoping that a thorough evaluation, from a developmental perspective, will be conducted before introducing a new skill.

I really like J‘s idea of using COACH to help determine how Evie’s time should be spent throughout her day–Evie has so much energy and attention and I would rather that she focus on a few goals and spend her energy and attention on those goals.  I like the idea of looking at Evie’s schedule and natural day at school and building goals around helping her navigate through her day more independently–like pulling her bag, getting her coat on, etc.

I would like to see Evie continue to spend time with her peers when possible and as tolerated by Evie.  In terms of social goals on her IEP, I would love to see this built in.  Further, it would be great if any kids would be interested in voluntarily partnering with Evie for recess or lunchBoth so she will have a chance to socialize and get to know individual students and so that they will have the opportunity to get to know her.

If the RDI therapy you have in mind looks like the video I sent, I am all for it.  I find myself naturally communicating with Evie in this way and find it very effective.  What I wouldn’t want to see happen would be to turn it into a social behavior intervention–asking her to make eye contact or orient her body in a certain way.

Evie needs to learnsafety commands and to follow directions to ensure her safety.  In teaching Evie to follow other verbal prompts.  I encourage you to use prompts that will be useful to Evie or things that she is already doing so as not to use too much of her finite energy/attention to do this.

Flops–in speaking to autistic adults i have a better understanding of what I have been feeling instinctively about flops.  Certainly, sometimes they are a behavior.  But I don’t think we know enough about Evie to ever assume that they are behaviors.  From a neurological perspective, Evie may be shutting down for a myriad of reasons–motor planning, processing difficulties, lack of information, sensory stimuli, etc.  I would like to see, for Evie’s well being, us all to assume flops are a function of her neurology rather than a behavior until we absolutely know differently.  I think calling everything a behavior is hurtful and that consideration needs to be given to that fact that she does not even have basic communication to express needs and wants.

Lastly, I would like to come in and observe Evie for an entire day when she is engaged in her normal program.  I would leave if my presence is disrupting her ability to concentrate.  Do you think this is possible?