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.