Autism - Support Across the Spectrum

kajira
Autism awareness... (long post, but my thoughts on it.)
by kajira
April 3, 2013 at 2:05 PM

First - I just want to say that I think promoting awareness and acceptance doesn't mean sugarcoating what the realities of autism is like. So many organizations try to downplay the seriousness of what some people live through, making it harder for people who are autistic to be taken seriously by those who haven't been around the more serious versions of it.

I think we need to be realistic about talking about how autism is a spectrum. It effects everyone differently, though there's core symptoms that many people may have in common.... So lets talk about symptoms a little bit.

There's 3 areas a person needs to meet for a diagnoses, and it has to limit or impair their life to get a diagnoses.... And it may look different for *each* person, which is why I think awareness is a more complicated issue because they don't really outline symptoms and how it actually effects most people's life, they often try to downplay it to make it sound less scary, or more normal for people who haven't been around it, to the point where people roll their eyes when they hear the word "autism" now.... and I think it does autistic people a great disservice. 

First, there's social areas you have to fall short in and isn't because of other developmental delays or learning disabilities.... Some examples of this look like the inability to 

Lack of facial expressions and responses, lack of eye contact and appropriate body language, lack of gesturing at the right time, or gesturing at the wrong times - responses don't match the social situation. Reduced shared interest with peers, abnormal back and forth conversation, which can range from struggling with it, to a complete lack of interest in it, or being non verbal. 

A struggle to make peer appropriate friendships outside of family/caregivers. Struggle to do imaginative play, difficulties making friends and having imaginative play or conversations can range from just struggling, to a appearance of complete disinterest in others.

The next part of the diagnoses, is repetitive behaviors, restricted interests and must show up in at least two of the following areas in order to qualify and may or may not include intense sensory issues : 

Stereotype or repetitive speech and behaviors, incorrect use of objects or speech,  echolalia (repeating things you hear - sometimes as their only speech) adherence to routines and rituals with a struggle to change from it.

Restricted or obsessive interests, could be trains, could be books, could be video games, it just depends on the person. Could be an obsession with a particular behavior or object even - for example obsessively turning on and off the lights for hours.  

Needing things to be the same, such as not wanting to try new foods (which could also be a sensory issue, but i'll talk more about that in a second.) asking repetitive questions over and over and over again. Insistence that things don't change, and needing rituals, even in small ways - even when it doesn't work for the situation. 

Sensitivity and sensory issues could manifest and look like a need to smell everything, sensitivity to light, sound, over-stimulation from a combination of environmental stressors, such as the wind howling, going from too hot, to too cold, unusual interests in sensory parts of their environment, such as wanting to lick things, touch everything - even when it might be potentially dangerous to do so. A person can be hyper sensitive, or hypo sensitive to sensory information that's coming in and it may not even be the same day to day, making it harder to accommodate or balance what a autistic person can handle.

This is not a perfect list, you can always look up the DSM diagnoses criteria - but I'm just trying to pharaphrase.

The third and final part, is that the symptoms must be present from early childhood - but may not be "obvious" until social demands exceed the capabilities of the child, generally, by age 8, it's pretty clear there's a problem.... even if their were signs earlier, some kids may not be obvious until their peers outgrow them, and the demands of social and environmental stress is too great for them anymore and it's clear they aren't developing in a normal fashion.

(well, technically, there's another line on the diagnoses criteria stating it must impair or limit everyday function, but I already wrote that at the top.)

So, what does that look like for someone like me? 

Let's break it down a little and give you some examples of what got me diagnosed with autism and how I meet the qualifications.

Part 1.

Lack of eye contact, struggle to have back and forth conversations, limited interests in video games, natural childbirth, and holistic medicine and nutrition - preference for animal over most people, to the point of being obsessive about talking about my animals. 

I fail to notice body language, and have appropriate gestures at the right time, I also fail to pick up on subtle social cues in conversations and am very literal. I have limited facial expressions in social context, and have a hard time mimicking the correct emotional responses in the right situations... I also don't always *care* to do so.

I have a hard time forcing myself to care about people who don't have a shared interest with me to begin with, so I tend to seek out social situations based on mutual interests so I *can* have some friendship with people who have similar interests... with out that, I'd be completely anti social and never talk to anyone outside of my family unit. 

Part 2.

I copy things I hear/repeat it, and sometimes with out realizing it, mimic hand motions, or other things I see with out realizing it. (Echolalia)

I have rituals and routines I have to stick with, or my entire day is thrown off, I have to prepare ahead of time, for days when I know my routines will be disrupted so I can come up with a new routine in my head, just for that day to stick too so I can function at my best. I have flapping behaviors and other self regulatory behaviors I do - I sniff everything, I chew on my hoodie strings (though I try to chew gum so I don't stick everything in my mouth constantly.)

I'm restricted in the things I'll talk about and i'm very resistant to trying new things unless i've thought about it for a long time and have some clue what i'm getting myself into - I'm not so restrictive that I won't ever try a new food, or a new environment or social situation, or trip - but I need time to come to terms with it before I can do it.  (It took me 7 years to prepare before I could finally go on a trip to disney land, and while I'm looking forward to it, 7 years is a long time for the average person to be able to prepare mentally for a trip to disneyland.)

I've obsessive about the order of how my silverware go, how I organize my desk and I try to limit myself because I'm an adult and know that there's somethings I can control and others I have to suck it up and let it go... but it's hard sometimes to let things go when my brain is telling me "fix it, it's wrong, fix it." Even though I rationally and logically know that someone else's way of doing things, is just as valid as my own... and maybe, sometimes, even works better than my version.

I have a hard time trying new foods, if it doesn't pass the smell test, forget it, then it has to pass the texture test.... lets just say i've worked really hard over the years expanding what i'll be willing to eat, but it was a long road to get here... and I still have a knee jerk reaction to new things - especially if i'm unprepared for them.

So, impaired function for my life means it effects my life in a daily way, but in my case, it's controlled enough that I can work *around* it - it's still there, it's still obvious to people who did my testing, anyone who's been around it a lot would spot me from a mile away if they knew what to look for..... I'm very autistic, but I can function because of my environment, and because the people in my life don't mind my quirks, and support and love me not in-spite of my differences, but *because* of them, they love me for who I am, flapping and all.

Breeding awareness, means that you stop and look at each individual person and how it effects them and their family. There's no universal "autism" that looks the same in each person. It's a spectrum, and how it will manifest in each person.... awareness begins by having people understand to look at the person as an individual.


Replies

  • LostInLove2002
    April 3, 2013 at 2:40 PM

    It doesn't have a face does it sweetie?

    Know what... I think you're pretty dang awesome. I think you're one of the bravest people I know to come out here and open up like that. I only wish the rest of the world would be just as understanding. 

    How often my son says to me "Momma, WHY can't I control i? I don't want to do those things."  You summed it up.

    I often feel that we don't need "cures" as much as we need understanding, patience and acceptance.

    I'd be honored to call you 'friend'. Flapping and all. :)  So flap on lil butterfly!

     

     

     

  • mamalena137
    April 3, 2013 at 5:13 PM

    I always tell people you meet one person with autism, you've met one person with autism. I'm trying to bring about awareness around me. I have a 4 year old with autism, he says some words and when he needs it he runs around and flaps. I also have a cousin who doesn't speak, just sits there and rocks. His grandmother cares for him. That always breaks my heart 'cause they haven't found a way to really interact with eachother. These are the reasons people need to be made aware of the spectrum and how it's so vast.

  • girl_incognito
    April 3, 2013 at 5:38 PM

    Emma have you posted this on your blog? I would really like to share this on my FB page but give the credit to you via a link.


  • girl_incognito
    April 3, 2013 at 5:39 PM

    Nevermind I see it on your blog... Sharing now... you put this beautifully

  • kajira
    by kajira
    April 3, 2013 at 7:07 PM

    hahaha I'm glad you liked it, and i'm honored you feel it's worth sharing.

    Quoting girl_incognito:

    Nevermind I see it on your blog... Sharing now... you put this beautifully


  • kajira
    by kajira
    April 3, 2013 at 9:12 PM

    thanks. the sentiment is appreciated.

    Quoting LostInLove2002:

    It doesn't have a face does it sweetie?

    Know what... I think you're pretty dang awesome. I think you're one of the bravest people I know to come out here and open up like that. I only wish the rest of the world would be just as understanding. 

    How often my son says to me "Momma, WHY can't I control i? I don't want to do those things."  You summed it up.

    I often feel that we don't need "cures" as much as we need understanding, patience and acceptance.

    I'd be honored to call you 'friend'. Flapping and all. :)  So flap on lil butterfly!





  • JTMOM422
    April 3, 2013 at 9:41 PM

     Whenever I read your posts you give such insight into the world of Autism that I have a better understanding of it. Your explanations are answers to many questions that I have. I am so glad to be part of this group with you. You have helped me understand so much when it comes to my son. Thank You

  • kajira
    by kajira
    April 3, 2013 at 11:34 PM
    I'm glad it helps.
    Quoting JTMOM422:

     Whenever I read your posts you give such insight into the world of Autism that I have a better understanding of it. Your explanations are answers to many questions that I have. I am so glad to be part of this group with you. You have helped me understand so much when it comes to my son. Thank You

  • HFBMOM
    by HFBMOM
    April 4, 2013 at 12:27 AM

    Emma, How can I say thank you for teaching me something new on a regular basis. This is definitely worth sharing and I'm glad you allow us to get to know you on such an intimate level. 


  • kajira
    by kajira
    April 4, 2013 at 4:04 AM
    I think it's important we talk about this kind of stuff.... pretty soon, we'll have adults who were once children, and their voices need to be heard too!!!
    Quoting HFBMOM:

    Emma, How can I say thank you for teaching me something new on a regular basis. This is definitely worth sharing and I'm glad you allow us to get to know you on such an intimate level. 


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