I was riding home in the van with Alex the other day, and he proclaimed, “I always want to be autistic”. Surprised by this declaration, I asked, “Why do you like being autistic?” He replied, “Because I like my interests longer than other people.” He also said something else and for the life of me, I can’t remember it. Drat! I’ve got to remember these “Alex-isms”. Here is a post evidencing Alex’s long-running interests, like ceiling fans, and here are some recent photos of him wiring up a new ceiling fan in his room:
This all goes along with some of the other recent things I’ve noticed about Alex. Rearrangements were made in our church recently, and for the first youth group meeting, everyone was asked to stand up and introduce themselves and share something that they love. Alex stood and stated his age, that he loved ceiling fans and cars, and that he is autistic. What?! That was surprising on one hand, but on the other hand, it wasn’t. He is very comfortable with his autism, and now, he has indicated that he seems to take some pride in it.
I have a good friend, Deeneen, who first came into our lives as a therapy worker for Alex way back when we moved here in 2000. Alex was only 5 years old and just becoming fully verbal. She worked with him under my tutelage for 20 hours a week for 1.5 years. (She also worked with Adam and William.) She is an amazing person whom I love. Anyway, she and I have been getting together again and renewing our friendship. Deeneen has an infectious laugh that is quick and sincere. Alex was always one to create one of these laughs. She fondly remembered recently when Alex had used the fact that he has autism to avoid a task requested of him from her. She has worked with the special population for years and years and she declared, “I have never heard anyone use their disability as a crutch.” And she just laughed uproariously.
My sister, Tammy, was able to discover his “cuteness” when we stayed at her house for a week a few years ago. She just got the biggest kick out of him by the end. One incident that she recalled over and over to anyone who would listen was this: Alex is big into knowing all his relatives through pictures (we live away from most everyone). One of his cousins lived with my mother (his grandmother), and my sister lives behind my parents. So, this cousin comes through, looks in, but passes through to where his other cousins were playing video games or something. Alex looked at his Aunt Tammy and asked, “Was that (cousin’s name)?” She replied it was. He then seriously and bluntly asked, “Do you think he didn’t say hi to me because he’s not feeling well, or because he’s just plain rude?” My sister cracked up and declared, “I think it’s probably because he’s just plain rude!”
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Alex knows I think he is the CUTEST thing ever in so many ways. When he does something cute, or gives his cute look, he says, “Don’t have a cute attack, Mom.” But, it’s SO hard not to 🙂 Of course, at almost 14, he’s definitely into being “handsome” now. And, he’s constantly repeating the mantra, “You need to respect girls” to his little brothers. I would love to be able to capture his “cute look”, but getting a picture without a weird fake smile is hard enough . . . LOL! Here is a recent picture of Alex on the side porch:
I’m pleased that Alex sees autism as an asset, and I think it is for him. Eli also is comfortable with the benefits autism brings him, though as he navigates community college, it is very important to him that others don’t view him as less than for living with autism. He does not want special privileges, though he accepts that it would be helpful to potentially have certain accommodations in some circumstances (such as taping classes that are lecture-driven to help with his slower auditory processing capabilities). Overall, although Eli notices the differences autism creates in his life, he is comfortable and even prefers what it creates (for instance, he’s not into being highly social and finds most teen interactions silly and not useful).
Anyway, I thought I would share some observations from my maturing boys who live with autism.
Thanks. Those are great stories. And pride in who we are is so important for all of us.
I think what surprises me the most is that none of my children until Alex has identified with a “label” before. They don’t call themselves homeschoolers or unschoolers; they are homeschooling or living life in their perspective. They are not right-brained learners or creative learners or visual learners; they simply “like Legos” or drawing or ceiling fans or trucks. They are not autistic or ADD or dyslexic; they simply can identify their strengths and weaknesses. So, to have a child identify with a label: autistic, is different. Maybe that’s really where my focus of this post was meant to be, and wondering how I feel about that. I know the identification for this child is more pronounced because of his rocky relationship with his brother, Adam, who has considerable difficulty because of autism. So, the word and understanding of autism became forefront for Alex as he learned to understand and navigate his relationship with this brother. Hhhmmm.
My son with HFA doesn’t show emotion very often, but started crying this morning after a conversation with me about his Autism. He said “mom sometimes its just so good to talk about something that I usually hate to talk about.” My head was spinning but I got the gist! I was his safe person today, and he could open up, and that was pretty emotionally freeing!
Thanks for sharing your story about Alex today!
Cindy, I wonder if some of your difficulty is the way that “pride” movements (whether GLBT, disability or whatever) have been (mis)represented by the media as groups asking for “special treatment”. If we think of equality as a state in which difference doesn’t (or shouldn’t) matter, then proudly claiming an identity, particularly in association with claiming your equal rights as a citizen, seems wrong somehow. And those who oppose change tend to then paint that claim as illegitimate (claiming “special” treatment).
I won’t claim that there aren’t those within various social movements who are claiming special treatment, but we must be careful in assigning that motive. For many, they are claiming an identity and the right to be accepted as who they are. They are saying that they should be granted their equal rights even though they are not the same as everyone else.
For disability (of any kind) that claim to equality can sometimes look like asking for special treatment because in order to have equality things need to change. If you have a mobility impairment and need a wheelchair then your equal right to access public buildings requires that public buildings not have steps up to the main entrance and that it is possible for you to open the door. If you are blind, your equal right to move around the city might mean that pedestrian crossing signals beep to indicate when it is safe to walk. And if you are autistic, your equal right to participate in society might require that people accept (and accommodate) your style of speaking and relating to people. From that perspective, for example, and IEP is (or could be) the adjustments necessary to ensure that children with various differences can access education equally to other children.
Because we are all different, equality does not always mean being treated exactly the same way. Sometimes same treatment privileges certain people over others.
I think it is a good thing that Alex feels proud of who he is, autism and all. Because the opposite of pride is shame. And the consequences of hiding aspects of who you are out of shame (and, lets face it, fear of discrimination) are all too evident in too many groups.
“I always want to be autistic … Because I like my interests longer than other people.” I love that! He is very perceptive.
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Topsy-Techie, this is one of the reasons why I love that Alex is so comfortable about living with autism. I want him to be able to talk about the realities of how that makes him so different without feeling it is difficult to find someone willing to view it as it is with him.
Now, taking this perspective with Eli, and taking into account some of what JoVe was saying, I am still working with him in order to help him feel comfortable with “what is” and not feel like it is an automatic condemnation by outsiders. I want him to understand that how HE feels about it will help others feel similar thoughts based on how he presents it through his own skin.
JoVe, as it pertains to how *I* feel about things, I ended up starting another post after writing a few words here and feeling maybe I should work through this more thoroughly . . . LOL! Thanks for the ponderings!
-Cindy
LOL. I know you like to ponder, Cindy. So I just gave you more to throw in the pot.
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Jove, another point to make from your previous comment is that it is probably one of the positive things that Alex identifies with the label autism with pride. I don’t think that he will allow anyone to discount him because of autism. He’ll let them know they are unfortunate not to have the benefits of autism and no one will be able to get away with telling him that he can’t do something because of it.
I think Eli is one step away from understanding and believing the same thing. His awareness of exclusion is ahead of Alex’s, and he is just developing his assertiveness trait in standing up for himself with a comfortable confidence.
This would definitely be one of the positives of self identifying with the label “autism” and having the confidence to defend their rights to access all they desire. I do personally believe in this right of those who are different.
My Aidan has just gotten attached to the light attached to the automatic garage door. He’s made cell phone videos of it, talked about it, visited it, insisted on scripted conversations between him and the rest of us about it… I just thought it was neat to see another kid getting interested in something a bit off the usual track.
I have been thinking recently of how Aidan has some real gifts. Not just “relative” gifts compared to his relative “deficits”, but just cool talents and interests that probably wouldn’t have developed if he were neurotypical. Maybe by claiming the label “autistic” your Alex is giving himself a sort of zone to develop areas that he knows are strengths but that could easily be dismissed otherwise. I’m just thinking out loud.
Unfortunately my Aidan’s diagnosis is cerebral palsy which isn’t really a descriptive term — it’s more like a summary of his lackings, which is sad.
Hey Willa,
Alex also liked a particular part of garage door openers! He liked the metal “stick” that hangs down as it opens and shuts, and one of his favorite Christmas presents during that phase is when his sister recorded various friends’ garage doors going up and down and zeroing in on the stick . . . and the chains.
I think you’re right about why Alex may be choosing to identify with the label “autistic”! He definitely understands that his interests are “different” from others in what they are as well as how long, and he absolutely loves that part of himself. It brings him great joy! So why would he not embrace the part of himself that may be one big reason for this feeling?
Also, his comparative is one of preferring the cerebral-minded, enjoyment of the strange but entertaining side of the autistic mind that prefers controlled and cooperative interactions versus his “normal” brothers who are “all boy” and choose crazy physical antics with competitive and out-of-control interactions.