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.

21 comments:

  1. This is so wonderfully written. I read Mr. Robinson's book last year, but just saw his FB page this week, which led me to your blog. My 9 year old has been diagnosed with AS and ADHD since he was 5. Like many he did not speak (or very little) until 3. With therapy and ADHD medication he has made leaps and bounds. However, he still has things he cannot do. He knows the names of skyscrapers in Dubai, but he still cannot tie his shoes.
    But I am not looking for sympathy. I am blessed to have a boy with AS. When someone met my son at age 6, they asked my brother, "IS she going to put him in a home?" That still stings to this day. I can only imagine how painful it must be for parents with Severe Autistic ID children. My heart goes out to them. Thank you for the blog, and I look forward to reading more.

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  2. Your right my son has Aspergers Syndrome and he tells me he is just different..Is that a crime? I often ask the question why do you want to change someone because of their difference?My son has made great strides in himself last year, although he has problems in a social setting, he still puts himself forward and continues to try his best to go out and socialise on a daily basis no matter what people think of him. that takes a lot of courage...

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  3. Anonymous (first one) I'm so sorry that someone said something so awful to you. It's unfortunate that there still is so much ignorance out there about differences, or disabilities. I have actually been fortunate in that I've had very little rude comments from others regarding my sons. The worst one that I can think of that is seems most common is that people tell my NT daughter that she is lucky that she wasn't born with autism like the other two. Thanks for reading and commenting!

    Spectruma, Thanks for the feedback! Glad you enjoyed it!

    Anonymous (two) You're right it does take a lot of courage to keep going out there and trying something that is so difficult and can be embarrassing. I'm glad that you are aware of all the effort it takes for him, and are encouraging. It really makes all the difference. I hope he finds his little niche in life and a few good friends that accept him for who he is. Thanks for your comments!

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  4. I'm with you, only my husband just doesn't get it. We're at the beginning of a divorce, and I am scared about whether the kids and I will make it. My daughter is 9, and she is in the middle of the spectrum, with PDD-NOS. She operates like a 4 year old. My son is 4, and I think he's trending to ADHD, maybe some Aspie traits, but otherwise doing okay (::knock on wood::). Oh, and I'm an Aspie, too, but it's been hard to find anywhere to get a diagnosis that doesn't require cash in hand (and the hope that insurance will reimburse).

    Like you, I'm going to blog about it rather than do a full response here or on JER's post.

    I'll just say that man, it is SO hard to get a job anyway, but with having been a stay-at-home mom all this time, and with me being lousy at in-person interviews, I don't know what's going to happen. I'll freelance, if I'm lucky... Meh, I'll leave it for now and write about it tomorrow.

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  5. Very well said. I have blogged before about how we all have different struggles. It is hard to reconcile embracing AS, I don't want to change him but he still needs to work on certain behaviors. And he has made such progress. I too was told when he was about 10 that he belonged in a group home because his behaviors were so severe. We've come a long way!! But I know it is not like your son and I often say that my perspective might be different about things if I had a child like that. so I try not to judge people even when they talk about the C word or that autism sucks- they are coming from a much different perspective. Sorry this is getting lengthy, I have blogged about it recently. Anyways I guess I am saying I understand it would be hard to reconcile the perspectives when the full spectrum exists in your life.

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  6. Christy, I'm sorry to hear about your divorce. I think it would be incredibly hard to raise my kids on my own, so my thoughts are definitely with you. You can sometimes get an evaluation from a University in their psych dept for a very low cost. I got mine for $30 from one. I don't have any insurance, so it was the only way for me to get it done. I made sure it was an official diagnosis so that if I was ever in desperate need and without the support of my husband I would at least have the option of filing for disability. Wouldn't be my first choice of action, but could be my only one in that dire circumstances. Please, come back and leave a link here, or on the FB page once you get your post written. I'd like to read it.

    Aspieside, I cannot believe someone would tell you that about your son! I guess we have been fortunate that the most offensive thing to me was being offered Risperdal along with their diagnosis without what I would even call a good reason. Wow. You're right, Beans and your son are different, with different struggles. Some ways harder, some easier. Sometimes, Bubby is Way harder to deal with than Beans, because of his anxiety and OCD-ishness. He needs things to be a certain way and is persistent. I know your son can be quite a bit the same, so your struggle and families needs are still important, and maybe even more misunderstood than mine, due to not being as evident. I'm anti-c-word and bite my tongue as well when I hear of others using it so casually in front of their children. I think in the end they way the C because they want their kid to be happy and taken care of in their life and as it stands with the way disabilities are viewed and the people with them treated we are unsure if that will happen. We try to take control over what we can, and try to change our kids to fit the world instead of the other way around because it's seemingly easier....and I'd better stop before this turns into a whole 'nother blog post! lol

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  7. Hi there,

    Re: JER's blog post and the response to it, I guess what bothers me is the implied assumption that people with AS or "higher functioning" never ever consider those who are more affected than themselves and must be reminded - no, admonished - to be more inclusive. Full disclosure: I'm a card-carrying member of the ASAN and a passionate self-advocate (also the parent of two moderate-to-severely autistic children - more on that later), but I haven't met a single autistic advocate who didn't consider the bigger picture. We get it, we don't live in a vacuum, and spending more time talking about one issue doesn't mean we don't care about the others, or that we aren't also working to address them too. This is getting long-winded, but I'll be happy to cite specific examples if needed.

    Re: "Different, not disabled", I see a lot of that talk on sites like Wrong Planet, but it strikes me as more like personal postulating than a serious political stance. TBH, some days I feel more different and some days I feel more disabled. I also think it's a common reactionary response to the unfortunately-still-pervasive idea in wider society that people with AS are inherently broken, diseased, need to be cured, unsuitable for love and marriage, etc etc.

    It's true that we all feel differently about different things. I want to make clear that I'm coming here to just to share a different viewpoint and not attack or put people on the defensive. However, I do find discussion becomes problematic when I see a line like "you'll never understand unless you have a child like mine". You're right, I probably won't understand. Just as you won't understand what it's like to have children like mine. Just as non-parents don't understand what it's like to have kids and white people don't understand what it's like to be a person of colour in a racist world. But hopefully, we're willing to have a conversation anyway and listen - I mean, really listen - to what others say because we want to learn more. The more we learn, the wiser we become.

    Again, not trying to attack, just sharing some thoughts.

    OK, I'll shut up now and thanks for the opportunity to learn.

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  8. I don't see anything about what you wrote that would be even mildly considered to be attacking. They're all valid points and all a part of a discussion. I have ran across a few people (Alex Plank from WP being one) that was advocating and not even knowing anything about the more severe end of the spectrum. I had actually had that in the post, but opted to take it out. He said something at a conference (I think it was in front of the UN of World Autism day, but not sure) that was just awful in regards to severe autism. I don't remember exactly what, but I corrected him about it, and he has since learned more and is much better with covering the spectrum more fairly. He's a human being with only his own experiences to draw from. He can't know everything. I acknowledged that, and as long as he is making efforts and learning I wasn't gonna get all over his case. I spent my fair share of time on WP (a few yrs) and maybe I am wrong in thinking that the wider population of people with AS are just as ignorant about the whole spectrum as they seemed to be there, as well as the differences vs disability I mentioned. There's a lot of hateful aspies out there that think (I mean honestly believe) they are superior to everyone that's not AS. I find that attitude just as awful as the people who think we're diseased, and broken.

    As far as the last part about not understanding.. I kinda figured that would not be taken well by most. I left it in, because I do think it, but well... I may just be reacting out of my own emotional irriation at the moms who act like their lives are over and spend all their time crying in their Cheerios about how hard it is to take care of a kid like I once was when I know damn well it's not the same as taking care of my youngest son. My son's needs are worlds apart, even though they are both autistic. Plus, my mother was one of those moms, so I will admit I'm emotional about that topic, and not really as unbiased as I could be. She wouldn't get off her pity potty, so we don't have any relationship, at all.

    I liked your comments and also look forward to more. Thanks for taking the time to leave them!

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  9. Thank you so much, I will be following your blog. Parents of NT kids tell me all the time (I think its kindly) that "all kids behave that way sometimes" MAKES ME CRAZY!!!!
    I want to start writing more about ASD but I find it so difficult.. WE have battled for so long to get our youngest aiding at school because he doesn't fit snugly in the departments box, and now that we have, it can be a battle to assign him the same rights as NT students. On one hand I want to through the DSM out the window with its ridiculous maps of disorder, but on the other our lives would be so diffficult without the labels it provides us. I really like how you speak from your own experience. Im at a place right now where I cant take my information any other way, I read a book not long ago about the strengths of kids with Aspergers, great idea, but I think assuming all aspies are math prodigies is as dangerous as assuming that an aspie child cant process emotion... oh my... I'll be back oxox

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  10. I used to hear the 'all kids do that' from people, too. Irritated me to no end!

    Thanks for stopping by and following! I appreciate it.

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    1. Ah, yes, I get that about BOTH my kids - one with an asd and one with an attachment disorder...Um, no.

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  11. I often find it challenging to know what to call people who are not able to function in everyday ways quite at the level we consider "normal functioning". I've heard the term "differently able" and one of my lecturers even said he preferred "retarded" for some disabilities because it indicates that the development isn't different, it's just held back (but it's become an insult rather than a discriptor now).

    I think it would be idealistic if we said we shouldn't label, because there IS difference and we need some labels to be able to talk about it and to be able to identify when provide assistance is required. But WHAT label (and, of course, there would be many sub-categories, because the difficulties you face would not be the same as someone missing a leg, for instance)? However, I find there are currently no satisfactory options for what to say. I don't want to imply that anybody who is not completely able to function in the average way is somehow a lesser person, but I do want to acknowledge challenges that the average person doesn't have.

    That was all I really wanted to say. And, of course, that I always find it helpful to read your perspective. I think one of the biggest problems is that so often it is "average" people speaking to the "average" public on behalf of - and I use this term under protest - disabled people. The more average people are engage with the actual people these issues affect, the closer we get to genuine understanding and real solutions.

    ~Zaiene

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    1. I'm not quite sure where I stand on the whole label debate. I see where they can be helpful, but also where they can be harmful. I don't know that I have ever like the term 'differently abled' either, but then I have such a difficult time putting into words why. I also want to acknowledge the difficulties that a person can have with daily living, while not speaking to them in a way that steals away their personhood one stereotype at a time. I guess the best way I've come up with to do that is to work on how we see as a society view disabilities and what they can mean for the people who have them. I think the biggest hurdle that anyone with a disability faces on a daily basis is weeding through true help for necessities while maintaining a sense of pride. There's a lot of discrimination and as well as pity out there. Neither is helpful.

      Thanks for commenting. I always like reading your POV!

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    2. Quiet Contemplation, thank you for writing so beautifully and powerfully on such a sensitive topic. You're right: the spectrum is so extreme from one end to the other, that it's hard to capture everything in a way that is not going to offend some people. I don't know that I could express my views as well as you do.

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    3. Thank you for your comments, and for reading. I appreciate your feedback. :)

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  12. (On reading my comment back, I worry that I made it sound like it would be some kind of philanthropic cause to listen to people with disabilities, impairments, disorders etc. I don't actually read your blog for any reason other than I find what you have to say interesting, and I often relate to it. The fact that I'm also educated and enlightened by it is a bonus!)
    ~Zai

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    1. Excellent blog!!! My son has high functioning asperger's and agree with you completely!!! No 2 people on the autism spectrum are the same, even when they have the same diognosis!!!
      A book I read from John Elder Roberts: Look Me In the Eye, My life with asperger's. It helped me to understand him a lot better :-)

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    2. Thank you! I did enjoy Mr. Robison's book. I've not read his newer one.I hope to soon. He's a super nice guy. My post was quite a bit the same as his and only garnered one or two negative-ish comments (none were really rude of nasty) but he got quite a bit more friction with his post. I felt a bit sorry for him in that regard. Seems he can't put anything out without others taking it apart and over analyzing.

      Anyway, glad you enjoyed the post. :)

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  13. My mom has eight (now grown)kids, four girls and four boys. All of my brothers were on the spectrum, and all of them landed in very different places. Three of the four are no longer diagnosable as on the spectrum--although the youngest is still pretty weird!--but my fourth brother will most certainly always be at home. He is thirty years old and no less human and capable of amazing feats and learning's than any one else, but much less capable of living on his own. My mom calls him her slow moving miracle! (She is a global autism expert and therapist and has said that he is still one of the lowest functioning people she's met. And she's met many from all over the world) So thank-you for this post. I try very hard to remember all of my brothers when I write tips on my facebook page as a way to remember to include everyone... but it isn't always easy. And my own boys are so lightly touched with autism symptoms that, as much as their teachers would probably like it, I won't seek a diagnosis. They don't need it. But I do sometimes forget myself when offering tips to moms of autism, because I feel like I AM one and that we are in the same boat. And I totally know better!!

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    1. Your mom sounds like a busy woman! Thanks for reading and commenting!

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