Awareness of My Autism

If you’ve read my About page, you know that I’m Autistic. I have Asperger’s Syndrome, and even though the American Psychiatric Association Powers That Be, in their infinite wisdom, actually decided to lump the diagnosis in with Autism Spectrum Disorder recently, I refuse to conform.  I still say I have Asperger’s, and I don’t care what they call it.

Asperger’s Syndrome is the only form of Autism that is genetic. (Thank you, one or both of my birth parents!) As such, both of my children have also been diagnosed, (though they don’t like to make it public, so please don’t tell on me for blabbing).

I waited until the last day of April to publicize this particular post, because I feel that it’s important that people don’t just think about this neurobiological condition for thirty days a year during Autism Awareness Month in April. Unfortunately, if Autism doesn’t directly affect you or someone you know, you may not have a clue just how it works. As such, I’d like to share just a few quick facts about Autism that many people don’t know before I get to my last poem of the month:

1. Just because Autistic people may not seem like they are aware of your feelings doesn’t mean that we don’t get hurt feelings. In fact, our feelings may be hurt more easily, all though you may never know it because we’re unable to voice it.

2. It’s a fact that people with Autism are more susceptible to digestive problems as well as food allergies. So, while you might think we’re just being picky, it could very well be that our bodies know we’re actually going to have an adverse reaction to the food.

3. We are slaves to our brains. While you can simply refocus or turn off your thoughts, we likely cannot. Even the act of falling asleep at night is often difficult for us because our brains don’t shut down.  Ever.

4. We are slaves to routines. So, even when something that should be fun (like a vacation or Christmas morning) occurs, it is likely a great source of stress to us because it’s different than what we’re used to.

5. We are hyper-sensitive. While you may not even notice the tag in your shirt, we are tactile sensitive, and the same tag can feel like needles poking us (though actually poking us with a needle may not bother us at all). While you may only notice the taste of food, we notice the texture, and that may be the reason we don’t like something.  And while you may feel that people are talking at a reasonable level, to us, it may sound like screaming.

So, although I could go on and on (and on and on) about living with this special brain, I will spare you. I just wanted to let you who are unaware have a little glimpse of the goings-on inside the Autistic brain. And now, on to my last poem of Poetry Appreciation Month…

autism

“Autism Awareness”
By: Rachel Carrera

April was the month
For Autism Awareness;
Those of us who are diagnosed
Know its unfairness.

It’s like our brains are separated
With some kind of schism,
Those of us who have to
Deal with Autism.

I thought my diagnosis
Would be my bane
Until I learned how to live
With my special brain.

So instead of something in my head
That’s unable to connect,
My Asperger’s Syndrome is now
Something that I accept.

But assigning one month for Autism
Awareness is just wrong;
People should be aware
Of it all the yearlong.

 

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61 thoughts on “Awareness of My Autism

  1. Amazing post! Just for the record, you have been one of my very favorite people I’ve met this month. I’m so grateful for YOU. 🙂
    (On a side note – April is also Sexual Assault Awareness Month, which I believe strongly should also be every month.)
    Cheers to you for finishing the month strong! 🙂

    • Aww, thank you! You’re one of my favorites as well. 😀
      I did not know that about sexual assault, but I am happy to learn that has an awareness month, too! Next year, perhaps I can find a way to incorporate that as well. (And I agree, that should also be yearlong.) God bless you! ❤

  2. Thank you rachel, for being strong and brave enough to share what it is like to be inside your head…and skin. It means a lot to me, because I often wonder what is going on inside my own little girl’s head, only she can’t say. She has not been diagnosed with any form of Autism or Aspergers, but she has many sensitivities and definitely has the digestive problems! Sometimes when she cries or gets cross but doesn’t seem to be in any pain, I have wondered if maybe voices or noises that she is normally ok with might seem too loud, so you really hit a chord with that one. maybe you could do more posts like this; I’m sure it would help a lot of people.

    • Ali, your Carys is such an angel. I’ve met other kids who had “full-blown” autism and are also unable to speak at all. Even as much as I talk and write, sometimes I can’t find words to express how or why I feel different than “regular” people. (Like I don’t know WHY my foods can’t touch each other, but I just know they HAVE to be separated… And I also know it’s weird, but I can’t help it.) I’m sure part of what’s going on in Carys’ brain is sheer frustration that she can’t let you know hoe she feels, But I’m positive she knows how much you love her. I think you’re one of the most amazing moms I’ve have the pleasure to “know.” Yes, if you’d like more posts like this, I’d be happy to accommodate. Thank you! ❤

      • Oh no, you’ve just set me off weeping into my coffee, lol! Can’t be diluting that caffeine, you know, I need every drop!

        Yes, please give us more! Exactly the type of stuff you’ve just written in that comment, about the food being separated. It’s personal, from the heart, and teaches us so much. Interestingly, Carys won’t eat her food unless it’s all mixed together. I tried mashing her food separately, ie we’re talking Irish dinners here, meat, potatoes and 2 veg, not very inspiring, I know.

        I think it’s great that you can be a voice for other people with autism who can’t express these things. I’d like to do that for Carys, indeed, I thought I was when I initially began writing but quickly realised that I don’t/can’t know what’s going on in her head, and she can’t tell me, so our story has to be from the perspective of a mother.

        It would also be interesting to hear your perspective as a mother with autism on the parenting experience.

        And yes, if there’s one thing Carys is REALLY good at, it’s expressing her love, lol!!!

      • On, no! Don’t cry! I think that you’re right… I’ve had enough people ask me in the past and now, perhaps I’ll devote one day each month to do an Autism post both from the person as well as the parent’s perspective. 🙂 Please give Carys a big hug for me. ❤

      • I will indeed! One of the comments mentioned lack of empathy. Thats really interesting to me as Carys, despite being loving in the EXTREME, has no empathy at all. If she hears a child cry, she starts laughing. Even babies start to cry when they hear someone else cry. I think your idea for a regular post on Autism is a GREAT idea, and judging by all these comments, it will be very popular!

      • Well then I guess I will address the lack of empathy one first. 🙂 I’ll plan on posting it this coming week. Have a great weekend! 😀

    • LOL! Thank you! I’m glad you heard something new in there. I feel bad that so many autistic people are unable to express what’s going on with them, so other people don’t know. I appreciate your stopping by. 😀

  3. oh i see… i thought all this was just normal? no? you mean there are more like me ?! 🙂 the more we understand ourselves, the more we can appreciate ourselves, and again, thank you

  4. I also dislike the ‘lumping’ of Asperger’s in with the other Autism Spectrum Disorders. When I was taking my classes on how to help autistic and special needs students, Asperger’s was defined as being’ autism like’ but NOT an Autism disorder. I’m all for learning more about how to help these special students while I have them…but just lumping it all together is a great misfortune for everyone.

    On a brighter note, I love the poem and you seem to have a good handle on your so called disorder now. Good luck with everything to you and your kids.

    http://alaynabellesmom.wordpress.com

    • I believe a lot of the symptoms of “the-disorder-formerly-known-as-Asperger’s” is very similar to qualities of Autism; however, other symptoms are COMPLETELY different. (Even how Autism is random and Asperger’s is hereditary.) It is sadly unfortunate, and I even know several doctors who are unhappy with the change. I have to wonder how long it will be before it gets changed back. Thank you! 😀

      • I know of several teachers who are still making sure that Asperger’s is not just ‘lumped’. It’s just a small thing, one here, another there, but it can all add up to make sure that people can come together in the best possible ways.

        The fact that you opened up in this post is another piece of the puzzle, thank you.

      • Thank you! (Sometimes I feel like I got a few boxes of puzzle pieces mixed together…there are never enough to complete the puzzle LOL! But I keep trying.) 🙂

  5. I just love your writing, your insights, your inspiring influence!!! As someone who is as undiagnosed as the day is long , I have to say this. I have known my whole life that though I have been compassionate and caring, passionate about people and their feelings, I have always been aware after conversations how I cshould have been asking the other person more about themselves (something about themselves!) I thought how could I be so insensitive? I thought I must be a self absorbed ass with little interest in others- or at least found it socially awkward to listen to people go on about themselves while also not comfortable with anything touching too close to the sleeve about myself so to speak. Then I watched my kids all very bright, though one with a very high IQ know to have learning disability but had compensated on her own (not discovered til senior yr high school), one who had traumatic brain injury (swevere concussion in MVA at age 16) which made her deal with reading retention issues she never had before and had taught herself to play classical piano after years of lessons and being comfortable in playing in front of others, crowds and such, and a son gifted intellectually who had some …awkward social skills as time went on( his teens and 20s and going forward in life- yet compensates in being a successful person in restaurant management. SO all of my kids basically in service connected occupations (one is an RN ,one is gcompleting getting doctorate in Eng/Lit in order to teach at college level but also manages a restaurant and has done preschool and toddler care, and my son in restaurant management. My kids have all had passionand compassion but also had a rather sharp or sort way of dealing with people, friends in particular and family on emotional level. I think all have had the tactile sensitivity as have I -though mine seems more pronounced thus far- although I also have ms. I think there are more opeople dealing with like issues in terms of numbers, statistics and while genetics obviously play into it…I truly believe our society and our environment has more to do with it than is given credit. I also find people with these issues to be pleasant and more interesting than most- often more fun at that. Thank you for sharing your experiences and information. As for the slave to routine- there are episodes of total spontaneity that I have seen in all of us- probably due to my having a gypsy syndrome where I think I feel a need to experience it all- whatever “it” is or when I become too aware of my routine becoming a rut that I must flee to be more productive. My son has not shown this at all. My oder daughter seems more stable in this sense and my younger daughter seems cut from the same slice of cake I was in this. But she is more practical. (I would become practical- even remorseful at some point as a redult.) As for stomach issues we are all in that boat- with my youngest having bottom third of her esophagus burned and scarred by the time she was 18. SOn and younger daughter also with bad allergies and me with moderate allergies. My one daughter has illuded diagnosis of allergies but has the tell tale nose crease.
    Life is amusing and I think while I have characteristics of aspergers, I think it is part of what makes life interesting to an extent- have to embrace who we are to live our life with abandon. Always lived with the feeling of being different,and inadequate in some waYS , AND THE FEAR OF ONE DAY BEING DISCOVERED TO BE FOUND OUT HOW DIFFERENT I WAS. oops caps locked- lol are there any coincidences?

    • You know, the odd thing about Asperger’s is… it’s kind of like how with a cold you can have both a fever AND chills (two opposite symptoms that go both north and south of “normal”). Both my kids with Aspergers don’t have the slightest ability AT ALL for empathy, yet, I am so OVERLY empathetic, it’s as if I can literally feel the other person’s pain. Other than that, for the most part, my son’s brain is exactly like mine and my daughter is the complete opposite of us. Best wishes to you and your kids! 😀

      • Thank you for that information Rachel. I have ms and find that the body is such a expert as being able to do those juxtaposition type symptoms. I am constantly amazed that a body part which is dull in sensory perceptions, numb, can also experience pain of unbelievable proportions. But I think what people and doctors especially must come to grips with is that the body never read the medical books. I can even experience theat in emotions. I get SO upset with animals that suffer… I mean I drive my husband crazy- like we get mice in the house and I can become a wreck at knowing a trap went off. We argue back and forth about humane traps. He points out we live with the woods across the alley in a house built in about 1864. We will have some wildlife visits. But that’s a whole other story. SO I get all WE are the ones in their turf .And you feel it’s your right to kill them. Now I was a nurse…I get the whole disease carrying, don’t want another plague thing. But I get really emotional about it. And sometimes watching things or hearing of the struggles people go through brings me to tears. Other times I can be too blunt in thinking well, oh that’s a surprise because of this choice or tha…which seems well, callous. lol but that’s probably another diagnosis- hehehe We are a society over focused on labeling. lol All these differences are the flavor in life ,don’t you think?

      • That’s true abut the over-labeling. I can relate to the thing about the mice… My ex got mad at me once because he took me fishing with him, then he caught a saltwater catfish (which apparently shouldn’t be eaten?) and instead of throwing it back in, he tossed it into the road and I cried for the fish. Just yesterday, I saw a jerk in a pickup run over a duck and I cried and came home and lost sleep over the cruelty of it.

    • Thank you! There’s a book called “The Curious Incident of the Dog in the Nighttime” by Mark Haddon. It’s a mystery and it’s about a teenage boy with autism who has a neighbor whose dog is killed and the boy is blamed and sets out to find the real killer. It’s an interesting book, and though it says he is autistic, I personally feel the writer shows him as having more Asperger’s qualities. It is an interesting book and a fast read (and doesn’t make you feel like you’re reading a textbook about someone with a disorder). Thank you, again! 😀

  6. I’m so proud of you for finishing the month of poems! You are a stronger woman than I, that is for sure.

    I just love non-comformists, so rebel away against the lumped diagnosis. Shame on them!

    You’re an inspiration to me, and although I’m sure it’s been a difficult road, I’m equally sure you’ve had blessings come out of having Asperger’s. You’re amazing! Never forget that.

  7. There needs to be a LOVE button for this post! Rachel, you are amazing! And yes, I agree that there shouldn’t just be one month reserved for awareness … of anything, whatever it may be. We should always be aware, as well as willing to learn and help. 😉

  8. Pingback: More on Autism | Rachel Carrera, Novelist

  9. I lived most of my life with Asperger’s Syndrome and didn’t know what was “wrong” with me. I did get a lot of criticism by well meaning family members but they were clueless. Imagine criticizing a color-blind person for not being able to tell the difference twixt blue and green. Your observations above are so true.

    • Exactly! I was undiagnosed until my son was in the 3rd grade and he was diagnosed. It answered a LOT of questions I always had about how I felt so different than everyone else. I usually try to do a post on the first Sunday of each month that deals with Asperger’s in case you’re interested. Thank you for stopping and commenting. 🙂

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