Friday, January 27, 2012

Inner Speech, do you have it?

When you read do you hear a voice?  Is it often a the voice of what you know or think the author sounds like?  I was shocked to learn a few months ago that some people do. I ran across this article about how dyslexics don't have an inner voice when they read.  I guess that most people when they are reading have a voice inside of their head that they hear.  It often is the voice of what they know, or perceive the author of the written text to sound like!  This was shocking to me.  I went to my husband, then to my daughter (who are both dyslexic) and asked them if they heard 'a voice' when they read.  They verified they did not.  However, I don't either.  I am not by any means dyslexic.  I never knew anyone did! I know enough about dyslexia to know that just like many on the autism spectrum, they think in pictures.  Obviously, this inner speech thing is not central to being dyslexic, or autistic, but rather a byproduct of being wired differently.  Though, not everyone on the spectrum has no inner speech, either as I went straight for a very active AS forum and inquired about their inner speech, or lack of there.  A few pages of responses later and there were no clear evidence that we all were the same in this area.

So, to my surprise, I have seen the same type of inner speech theory  come up this week in relation to autism and ability to problem solve.  I think that their data and reasoning behind it is flawed.  I also think that the test to see if you 'have inner speech' (which I will post later in this entry) will produce much worry on the behalf of ASD parents everywhere that want their child to learn to live independently. It also assumes that one can bypass this issue by teaching an autistic person who thinks in pictures at a young age to use words instead.  This makes no sense to me.  It is impossible to think in a different way then one is wired to think.  It would be like trying to force Windows to run on a Mac.  Not gonna be compatible and everyone is gonna be confused and frustrated in the end.

How does someone like me, who runs a household efficiently and is capable of living independently do it without an inner voice to problem solve, or scaffolding, as my son's speech path would say?  I talk out loud, to myself.  Not as in having a conversation with myself, but as in talking myself through each step.  I'm sure that many of you with verbal children on the autism spectrum have heard your child talk to themselves.  We do this, because we don't do it inside of our heads like others do.  The more I concentrate on something the more I need to speak out loud about each step.  I know my son can be heard in his room at night repeating many conversations he's had with others that day, or practicing on new ones while he goes to sleep.  This is our way of working through the social stuff that you all do by instinct.  For me, it got much worse in my adolescence, though I don't know why.  I'm guessing it was due to needing to focus all that much more on the social side of language, instead of just using it for sharing information, as I had used it my whole life up until that point.  No matter what it is, I problem solve it out loud, or by writing it down.

To test your inner speech ability: 

(Taken from the link above)\


For this you need two people - one asking the questions and the other doing the test. If you find any of this difficult, it may indicate problems with reading.
Ask the person to say numbers one to 26 out loud, then to say them again, but saying one out loud and two and three in their heads, with their tongue clamped between their teeth.

They must not move any part of their body, such as nodding their head or using their fingers.
The correct sequence would be 1, 4, 7, 10, 13, 16, 19, 22, 25. They must complete it within 25 seconds.
Using a pen, tap on the table, say, ten times and ask the other person to count the taps in their head, applying the same rules as above.

How did you do?  If you would, please leave a comment about how you did on the test and whether or not you have an ASD, dyslexia or ADHD.  You can also find more tests and some very interesting data on this page  about inner speech and different learning abilities.


Tuesday, January 24, 2012

Spot the Autism

This video here poses a question about being able to 'spot the autism' .  I did right away, but I will post it and continue with my writing below so you can take a moment to watch it, so as I don't give away my point.











Were you able to see it?  I found this on a FB page about autism.  The page owner said she had experience with autism for over 25 years and couldn't spot the autistic child in the video until it was pointed out to her.  I interjected that I could right away and attempted to explain why in one or two sentences.  The entire thread continued on about services being so wonderful and inclusion and latidah.... everyone putting in their two cents about how they could never ever tell... completely ignoring the fact that I said anything.  Apparently,  they don't acknowledge any autism unless it fits their definition of what they think autism is and me and my words weren't it, as well as this little girl's actions.  The girl in the video could have been me as a child easily.  She is not behaving non-autisticly. She is copying NT behavior.  That is how I can tell she was on the spectrum, immediately.  She is me as a child, and even now as adult.  Watch carefully, and you'll see that she is always one second behind everyone else.  She pauses and looks around to see what she is supposed to be doing in that moment, then does it.  She is becoming a master chameleon.  When in doubt, just follow along, as been my motto for my whole life.  I can fit into any situation that I need to by smiling and mirroring. It isn't natural.  It never will be.  That's why socializing with others is so tiring and difficult.  It's like doing a huge math problem in my head.

Don't get me wrong. I don't think that that inclusion is a bad thing, or that ASD kids can't be taught social skills. I think inclusion is great and we can most definitely learn social skills, but it's not ever going to be second nature to us.  All I am saying is please don't ever think that if ASD kids are force fitted into social situations we will by osmosis become more typical, because that's not what necessarily happens. We may learn to fake it more, but it will always be an act.  As for the original intent of the video, I really don't see where schools try to exclude kids with autism.  I've always had the opposite problem, which is getting schools to address my son's (Bubby, because he is more like the girl in this video) autism.  That's another post for another day, though! 


Saturday, January 21, 2012

Would you change your child if you could?

This is my blog response to a question posed by  Autism Daddy's  post   http://autism-daddy.blogspot.com/2012/01/to-parents-that-say-i-wouldnt-change-my.html  .  As usual, I am not really black and white standing on one side or another.  I'm likely to be in agreement with some of you  on some areas of this post, and not on others.  I'd also like to add, that this is more of a response to the global autism community where this question is often posed and hotly debated, rather than to Autism Daddy personally.  I don't really follow his blog, or know or conversate with him, so I really have no opinion of him one way or another, or his views.  I just thought that since his blog was the one that brought my attention to this issue today that I ought to refer to it as where I'm starting from, but I'm not necessarily going to address those posts of his point by point.  I don't think that there is 'right' or 'wrong' in this situation.  That is one thing I want to make clear from the get go and I will not respond to vitriol based comments that are left after this post as if there is only one way to view this very complicated issue.  If only life were that simple.

So, would I change my autistic children for the world? How about myself? What would this mean exactly when people say this?  I'll be the first to admit I have lots of trouble seeing hyperboles and general concepts.  Oops, there goes my autism.  I can't imagine something that just isn't and never will be.  There can't be any change in my or my son's autism status.  There is no cure, or way to be changed, so for me to think about it, well... I just draw a blank.   It's illogical, and impossible.

However, what do I think about erasing/easing the struggles my autistic children face everyday?  That, as I think any parent would answer, would be a resounding Yes!  Yes, I would love to ease my ASD kid's struggles, and My NT child's as well.  Afterall, that's the whole notion behind the idea of 'changing our child' isn't it?  For most of us, it isn't about the shallow concept of not getting what we anticipated.  Although, I will say that that is part of it for some parents of special needs kids.  Most of us, it is all about wanting our kids to be happy, and healthy and have the overall ability to pursue what they want in life without big monstrous obstacles in their way.  For many, it's the ability to not have to live in a house that's a fortress, always on lockdown, alarms set, for the next elopement.  Or, it's about not scrubbing poop off the walls and a oblivious child at 3 AM.  Or, maybe it's about not having to worry about your 6 foot adult child becoming suddenly violent in a fit of sensory overwhelm and living with the fear that maybe you might be seriously hurt next time.  Maybe, it's about not wanting to see your daughter sit alone at lunch knowing she wants desperately to join in with the group of girls at the next table, but doesn't have a clue as to how to go about it.  Maybe, it's about not worrying over who will care for your autistic child when you are gone, and if they'll be taken care of at all.  Those are all very common worries when dealing with an autistic loved one.

I want to be clear that I understand those concerns and I have those, too, in my own life with the broad spectrum of autism that is in our household.  I also understand that there are some people that are better suited for being special needs parents.  Not because some people are better than others as people, but because we all have different things we are good at and things that seem like a big deal to one person may not be as much to another.  This isn't about character as much as it's about personality.  Some parents of ASD kids need extra support.  I wonder what poeple's opinions would be of how autism effects their lives if the support they needed was there?  What if, there were ways that eased some of the issues autism poses?  What would people's opinion on it be then?

I wonder this, because I wonder if it's possible that in the future, we can have these resources readily available.  What if, when a person was diagnosed there were the supports in place to help with the struggles that they have everyday?  A team of people specializing in what your child might need.  Occupational therapists, and Speech paths, as well as physical therapists.  What if there were optimal schooling available, instead of this half assed educational system we have now that doesn't really accommodate anyone?  There could be ideas on how to integrate the sensory system for better sleep, less pooptastrophes, less violent overwhelm.  There could be a communication system, even if it isn't verbal.  There could be social skill training and better acceptance out in the community for autistics.  Respite that was available not just to the wealthy.

I am appalled that as of now, most usually there are none of those things offered, not explained to parents when their child is diagnosed with autism.  Usually, there is meds offered for 'behaviors' but nothing in the way of how to help the person with autism, or the family live a functional life.  Some people research and figure it out for themselves if they have the ability to do so.  Others, have the resources to buy the help they need.  I am appalled that there are few educational supports that are reliable for children in a country like ours.  There is no reason that parents should be as afraid as I know most of you out there reading this are, to send our kids to school everyday.  This isn't the fault of autism.  This is about stepping up and taking care of each other as humans.  Disability will always be a part of society and what it means to be a part of the human race.  There is no changing it.  We must learn to advocate and have compassion for others that are different from us.  I don't want other's pity.  Pity helps no one.  I want understanding.  I want equality, not tolerance.  I don't want my boys 'tolerated'.  No.  I want them valued. I think that in the future with enough advocacy we can possibly achieve this goal.  Maybe, with some of the deficits addressed with autism there might be more room to see the potential.

Monday, January 16, 2012

Movies Featuring Autism and Other Disabilities Part 2:

Here is part two of Movies and TV programs featuring disabilitiesThis one mostly has movies/programs that are not about autism, since part 1 mostly featured autism. Stay tuned for part 3, and possibly 4!


As Good As It Gets













At First Sight


 








Hear And Now












Deaf Me - Silently Changing the World 


 




Independent Lens | Lives Worth Living | Clip 1 | PBS 



   











A Dog's Life









I'm An Artist












A Beautiful Mind











Little Man Tate










Pumpkin










Bubble Boy



 






The Elephant Man


 

Sunday, January 8, 2012

Oh No. Here We Go Again...

I'm seeing a lot of posts and tweets about the new upcoming series on Fox called Touch .  I haven't seen many critical reviews of what I see is a horrible representation of autism.  People complain about Rainman being referenced to autism, but like this?  I don't get it.  Autism is not a shell.  Autistic people are not paranormal changelings, indigo people, bridges to higher otherworldly knowledge, witches, magical, or any other mythical being.  We are human.  Nonverbal autistics are not mute angels sent here as prophets with otherworldy messages.  If you don't know what damage this sort of TV program can do, please do a google search for autism and witches, or autism and paranormal, or autism and clairvoyant, or autism and psychic.  Expect these results to be more common after this show airs.  When I meet someone in the supermarket I do not want Touch to be what they think of when they see my nonverbal son.  I thought we left that awful stereotyping back on the 90's with movies like Mercury Rising.  I'm really concerned with the odd ideas this show is gonna put into people's minds about autism. I do understand that this is a fictional program that is depicting a fictional scenario, but is those without any idea as to what autism is going to fully grasp that?  That's my concern.

Edited to add this link as an example of what I'm talking about: http://www.telegraph.co.uk/news/uknews/crime/9115795/Couple-murdered-teenage-brother-they-accused-of-witchcraft.html

Saturday, January 7, 2012

Sensory Solutions Part One:

In the next few entries I'd like to talk about the sensory system , sensory processing issues , and some solutions for these things that can commonly occur in people with neurological differences.  This will probably be a two or three part series, so that I can cover the topic thoroughly.  It's such an important area to address when dealing with disorders such as autism, asperger's and sometimes ADHD.  If we can get the sensory system operating optimally so many of what parents and clinicians call 'behaviors' would disappear.

The sensory system is a wonderful mechanism allowing us to process the world in our own private way.  We all have experiences in the sensory realm that is individual to us at any given moment.  We seek these experiences out, and are often equated to the feeling of what it means to be alive.  Memories are even stored around this information.  A certain smell of perfume, or sound of a song, or taste of dessert can bring us back in time years ago.  This is how potent and important our sensory experiences are to us as human beings.  However, as much as we put a high value on seeking out pleasant sensory experiences, it's equally unpleasant when our sensory systems don't work correctly.  We can get too much information at once making us feel attacked by our environment, or not enough information leading us to feel out of sorts and needing some input from our surroundings.

There are five sub-systems that make up  our sensory system:

1. Visual: This is the system in which allows us to visually interpret the world around us.

2. Auditory: the sense of hearing

3.  Somatosensory: This is the complex system we use to process touch. This one is the most diverse system we have, as it affects how we interpret  temperature, pain, body position, and tactile perceptions.

4. Gustatory: This is the system that processes taste such as, sweet, bitter, sour, salty, and umami (which is a Japanese word meaning savory, or to describe a particularly delicious food)

5. Olfactory: or sense of smell

Sometimes, when the nervous system interprets signals differently or in an unorganized way our experience of the world gets out of whack.  Our response to certain smells, sounds, and sights as well as textures can feel like torture.  This is considered hypersensitivity.  When the environment does not provide enough input via our sensory system it's called hyposensitive.  From what I've noticed kids on the more severe end of the autism spectrum seem to be hyposensitive to sensory stimuli.  Their day is usual filled with self stimulatory (stims) activities designed to provide them  with the sensory input that they crave to feel comfortable.  Although, most people on the spectrum have varying degrees of being hyper and hypo-sensitive with different senses at different times. In order to help people with Sensory Processing Disorder a sensory diet may be implemented.  It's always best to consult with an Occupational Therapist to develop a plan to suit your child best, but that is not always possible for everyone.  I'll be sharing tips, as well as different tools to help develop a workable sensory diet for anyone needing help maintaining their sensory system.

Thursday, January 5, 2012

Movies Featuring Autism and other Disabilities

I thought it would be nice to have a compiled list of movies and TV programs about Autism, Intellectual and other disabilities and differences. So, here are a few, in no particular order, that I and some Twitter friends came up with. I will do a part 2 maybe even 3 if needed so that the list doesn't get overwhelmingly long. *Note that I am not necessarily endorsing any of these films or programs as being authentic representations or otherwise accurate portrayals of any disability or difference.   

Adam

   
Mozart and The Whale

   
 Snow Cake

 
My Name Is Khan  
Loving Lampposts

Wretches & Jabberers
Last Orders

Tuesday, January 3, 2012

My Response To John Robison's Blog Post

I would like to do a kind of response to another blogger's post   Looking Forward At The Autism Spectrum by John Elder Robison      I didn't want to leave a lengthy comment on his blog that was more appropriate for my own blog post.

I agree with most of what he says in regards to the way society has grown to view the autism spectrum.  It used to be only the most severe, profoundly affected people were counted as being on the spectrum, but in the last 18 years that spectrum has broadened quickly with the addition of Asperger's Syndrome to the DSM in 1994.  There are other factors that play a part in the growing numbers (and by proxy definitions) of ASD in the last 20 years, but for this post I will talk mostly about what the differences can be between profound autism and asperger's and where we remember those differences where they are important. Though, if one is interested in exploring these different reasons, and considerations I'd highly recommend reading Unstrange Minds-Remapping The World Of Autism By Dr. Grinker  

As I have stated in other posts human rights, most specifically Disability Rights is one of my special interests.  I have a pretty good idea of the different needs that many autistic people NEED on a daily basis. I also am all for acceptance of autism as it is, without making ASD people seem inferior or less than.  I think that at times it's hard for me to reconcile my different viewpoints, and I am by all means learning and growing everyday as all of us do.  My opinions shift from time to time and adjust to new knowledge. I see nothing wrong with feeling good about being being autistic, and feeling proud of one's neurological wiring.  I see that there is worth and reason for that viewpoint.  Having confidence and pride in who you are is a spectacular thing.  One in which I don't wish to downplay at any time in this post for people with Asperger's or any form of ASD.  But, on the same token we can't forget that there are areas that autistic people struggle with  (some more than others) that are vitally important to living.  Some people will require more assistance than others, and there is no shame in that.  To get away from discrimination I think we need to remember that having disabilities does not diminish worth, or personhood.  I think that often times people with AS will state that they're just different, but not disabled.  I have always taken an issue with that stance.  If you have nothing that separates you from NTs, then how or even why did you get a diagnosis?  How did you meet the criteria?  Why did you go to see a psychologist in the first place?  Why is it such a bad thing to admit that you're disabled?  Why is it okay for some to have that label, but not yourself? Are you in the mindframe that it makes you less than to be labeled as disabled?  If so, than do you see yourself as better than others with disability?  These are hard questions.  They beg for an honest answer.  They actually go in circles if one doesn't answer them honestly.  You can't get away from it.

I admit, I have areas of everyday living that would be dreadfully difficult if it weren't for extra help that I receive from my husband.  It isn't a lot, and I am able to mostly take care of my own, but I would not be able to live a full life free from extreme conditions if I were left to my own devices for food, shelter and other living requirements.  Those things would be too difficult to master simultaneously for me.  There'd be strong deficits that would affect my overall wellbeing.  Though, I also have to admit that while I do have some deficits that require help the autism spectrum is broad.  I have a pretty good example of differing points on the autism spectrum in my own house.  I have Asperger's (and to be fair, I'd say fairly mildly at that, if there were such a thing).  Bubby has PDD-NOS according to a few doctors and High Functioning Autism according to one, AS according to another.... In other words, the jury is out with him on the exact diagnosis.  I do not take exception to him being considered mildly autistic, as I think that's a good description, since I don't like to use functioning labels.  Beans, is what any would consider to be profoundly autistic, as well as Intellectually Disabled.  This is not due to him being nonverbal or any of the things that can sometimes look like a child is ID due to not testing well, but rather globally he operates on a level of about a 12 month old.  His official diagnosis is Moderate-severe autism with a Global Developmental Delay-including a cognitive delay.  I have absolutely no delusions in my mind that he will need 24 hr constant supervision for the rest of his life.  If he is potty trained, and uses utensils as an adult I will consider therapy well done.  He is 8 now and nowhere close to these things.

While, I have mixed feelings about autism being classified differently in the next DSM I will say that there is a vast, vast difference between myself and Beans.  Absolutely. Since I have somewhat unique circumstances to where I can experience autism firsthand from an AS perspective, as well as from a mother of 2 very differently affected little boys I can and will get very offended by other's remarks that their AS child is comparable to the level of care that Beans takes.  While I would never tell another mother her struggles don't exist, or diminish her level of pain, as we all feel differently about different things, but please don't say you understand unless you have a child like Beans.  I have only ran across a handful of people online that have a child like Beans, and every one of those mothers had made the difficult decision to put their child in a residential care facility by the time they were an adolescent.  Clearly, the level of need is not even close, so please think about that when you advocate.  If you have AS, please remember that there are those that need help every minute of everyday to survive.  There isn't anything wrong with this, but remember to acknowledge them in your advocacy efforts in a way that shows respect, but also doesn't diminish the level of need they need everyday.