- Ari Ne'eman, Founding President, Autistic Self Advocacy Network, Obama Administration Disability Appointee, New York Times, Nov 3, 2009
I am typically the only one on ASAN's board to interject the issues of the LFA, because my son is one. Whenever I do this, I am attacked by a few, including Clay Adams. Clay doesn't like it when I discuss the LFAs on ASAN's board. Neither do a lot of people. I wouldn't be surprised if I was eventually kicked off that board at some point. I'm the only one that I know of that has ever been put into moderation mode there. The fact is, that Clay Adams has no interest in the LFA and never has.
There are others though that do think LFA needs more representation and advocacy on that board and in the online autism community. However, most don't want to really expose themselves for fear of being attacked like I have. They see what has happened to me and they don't want any of that to happen to themselves.
- Kent Adams, ASAN Board Member, Father of Son with Low Functioning Autism, quoted on Autism's Gadfly Comment Section, February 3, 2010
Any mention of Low Functioning Autism, autism and intellectual disability, or autism and cognitive impairment is often met by hostility from some persons with HFA/Asperger's. Many of these persons identify with being on the "autism spectrum" as does Ari Ne'eman, the very high functioning university student with Asperger's.
Videos that portray the harsher realities of life for lower functioning autsitic persons are met with very high profile, media seeking protests by Ari Ne'eman and others who like to identify with the autism spectrum. ASAN which claims to be an autism "self" advocacy organization has no actual low functioning autistic persons, on their Board of Directors, for the obvious reason that such a role would probably be beyond the ability level of persons with low functioning autism disorders. As the comment by Kent Adams, a father of a low functioning autistic boy, indicates he is pressured to refrain from raising LFA as a topic for discussion by the ASAN Board.
The ASAN Board is comprised almost entirely of very high functioning persons "on the spectrum", lawyers, technicians, writers and university students. ASAN has a very broad definition of autism going beyond persons with an autism diagnosis to include those who simply identify with autism :
The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have a diagnosis in any of the official categories (see Diagnosing Autism) or who self-identify with the Autistic community.
ASAN's broad definition of autism helps extinguish the concept of autism as a medical disorder or diagnosis and helps include higher functioning persons with no actual autism diagnosis. At the same time the ASAN autism definition mentions intellectual disability only in a limited sense of difficulty with communication and describes such difficulty as a "different way of thinking" suggesting that it is usually accompanied by being gifted in other areas:
2. Non-standard ways of learning and approaching problem solving. For example, learning "difficult" tasks (e.g. calculus) before "simple" tasks (e.g. addition), difficulty with "executive functions," or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic. When credible sources such as the CDC and CPA are cited to back up the claim that large numbers of persons with Autistic Disorder diagnoses are also intellectually disabled some bloggers with HFA and Asperger's, and even some autism researchers, react by dismissing or ignoring the information. Kent Adams, noted above, has described receiving hostile reactions when he attempted to raise Low Functioning Autism issues on the ASAN board.
The denial of the existence of Low Functioning Autistic persons, persons with Intellectual Disabilities and cognitive impairment, is discrimination. The reason why some persons with HFA and Asperger's refuse to recognize the realities of large numbers of low functioning autistic persons while embracing undiagnosed higher functioning persons is clear:
Identifying with "autism" is cool, it can make the person identifying with autism feel better in some way. Who wouldn't want to identify with a Mozart or an Einstein?
Identifying with those who are intellectually disabled is not cool. Identifying with those who live their lives dependent on the care of others, some in very secure institutions ... that's not so cool.
autism
Have you seen the crap he's (Clay) posted on Stephanie's blog lately??
ReplyDeleteAs one who as a child on either end of the spectrum... the elder doesn't know he has a dx and he's 10. And guess what... even if he did... he would NEVER be able to use it as an excuse.... and that's what IMO those that don't need the dx but want to be part of a cutsie club do. "Well it's my Autism... I can't help it". Excuse me?? What are you talking about?? You're a fully cognitive adult... autism doesn't mean you can't think, make choices, know right from wrong, learn appropriate social/behavioural skills and learn...
AND... he'll never be allowed to put down or ignore his brother.
A week ago in the van we had this discussion - copied from a email I sent to my friends:
Child "What happens when I'm an adult and can't drive"
Mom "I guess you'll have to learn"
Child "What happens when R is an adult and can't talk"
Mom going... oh shit where did that come from....
Mom "He may have to go and live with other people" thinking quickly
about the thousand questions that one will start and how do you
explain group home living to a child that doesn't even know he,
himself, has a "diagnosis".
Child "No, I don't think so. He can come and live with me." Mom
thinking... how to shut this down before he starts worrying.......
anxiety... Yikes!!!
Mom "G, he's only 8yrs old right now. He's talking more every day.
Why don't we wait until he's an adult and then we'll decide."
Child "OK".
Even at 10... he's a much better "adult" then those that would rather ignore his younger bro and his difficulties.
Discrimination...yes...I have said it before, thanks for saying it again. FW2...the siblings grow up alot faster and they are the better for it, you know. My eldest makes me proud every single day.
ReplyDeleteYou know what else isn't cool?
ReplyDeleteIdentifying with autistic or mentally ill people who have drug addictions, criminal records, whose names are on sex offender registries, who can't hold down jobs or succeed in school, who are psychotic, or who otherwise just aren't posh enough to be members of club ND.
My father is a techie and an introvert, classic autistic traits according to club ND. He also is a raging bipolar alcoholic, has a criminal record, lost his license and his job, is delusional, has cognitive disorders, and is on Zyprexa.
Can't use that.
when I was a toddler, I struggled with phobias and used to play with knives. I got in trouble in middle school for aggressive behavior. I got in trouble in high school for sexually inappropriate behavior and nearly failed lower-level classes my first two years there. Yes, even those math and science classes that all autistics are so good at (sarcasm). I did well in my other classes, but not nearly as well as I could have. I am doing extremely well in college, but colleges beyond the community college level require high school transcripts, so who I was in high school is pretty much a burdern I'll have to bear for the rest of my life.
Can I handle a college environment that is more rigorous than what community college has to offer? Can I get a job and keep it after? Your guess is as good as mine.
Again, club ND can't use that!
Granted, I still have a lot of great options, and many autistic/PDD people don't even come close to achieving what I have. I'm just saying that PDD has added difficulty to my life that really didn't need to be there and that I can't do anything about. That's a hard situation, even if you don't have an ASD. And I'm sick of club ND people ignoring it or making it "cool."
By the way, I never found my niche of "autistic" friends consisting of nerds, gamers, etc. like club ND promises we will. Because they're NOT autistic, and I don't have anything in common with them.
What I don't understand is why people view autism as something happy to prance about? My daughter can't even judge a person if their bad, good, whatever, everybody to her is a playmate, therefore; if she is being robbed or god forbid raped, she has no defense, no understanding of what to do or what is going on!
ReplyDeleteShe is also one of the happiest people I have ever met, despite how handicap she is, and how limited her verbal communication can be. Autism is Autism, to me its got so much mystery behind it, that it should neither be seen as some disease nor some difference in my honest opinion.
I am not really into the whole Neurodiversity movement (partially cause I do not understand their concepts or their views.) I will not lie and say that I do not know what it's like to have Low-Functioning (or Severe.. is that the same? LFA/Severe right? I never understood the labels with functioning labels..) Autism. I'd never say I did, because that would be a lie and I think it vastly misrepresents those that are on the lower end of the spectrum.
ReplyDeleteI know many believe that cause I can type so well and can explain myself that I'm on the extremely high functioning side of Autistic Disorder. I guess you could place me there, though according to the professionals I'm a moderate-mildly affected by Autism, though I have an Average IQ. I'm not intellectually disabled (thank goodness for spell check, I am horrible with spelling.)
I do not think Autism is a cutesy thing, I have other disorders along with Autism which makes life difficult for me at times. I do not want to be apart of a club, I do not want to scream how "cool" Autism is because it has done nothing "positive" for me. I do not have the "cool" abilities that those with HFA/Asperger's claim to have (mad science and math skills, in fact.. I have SEVERAL learning disabilities so being a "genius" is out of the question for me.) I do not have savant skills, I don't have anything that makes "Autism" super awesome. The only positive thing I can say is that I have had no desire to be a 'sheep' and do drugs, and go to extreme parties with people my age (i'm almost 21.)
I wish I could sound smart and be able to actually voice my opinions like others in the ND movement can, they sound so intellegent, where I feel like I am not. I don't understand a lot of the things they do. Why can't I be like them?
I desire friends, I won't lie but when I get them I have no incling what to do .. so I end up losing them because after awhile I just can't handle doing certain things. I avoid movie theaters unless it's the last showing cause there are less people there, I go to school (which is rare, and I am grateful that I have the semi-ability to do so..) but I get extra help and accomodations cause I can't do things like other people can.
I get so tired of people trying to make Autism to be a difference, if it were just a difference there would be *no* need to have such a condition called Autism. It's a disability, it's disabling and people trying to tell me that I should feel bad and ashamed for calling it a disability make me feel .. some emotion that I'm not sure of the word for. I'm not ashamed of calling Autism a disability, it's life. It's who I am, and yes... I admit, I wish I were like everyone else. If I could be able to do things that ND people can (like have a job, relationships and a family..) I would be ecstatic, but that's not looking so good in my future. I will try, because that's all I can do but I struggle so much. It makes me angry that people try to short come my difficulties.
I'm not ashamed for who I am, but it would be nice if I could get some *help*, I need *help* but I am getting none.
And, by the way.. I respect your blog. At first it was a tough read, but it's reality for many parents and I am sorry at times that you get yelled at by people who want to keep Autism as a pretty pink bunny.
I do not have a blog, I'm too afraid to have one. I've made one before but I delete it everytime I make entries. I wouldn't know what to do with it other than talk about what I did during the day.. and that would seem boring I'm certain. I hope you don't mind that I comment every now and then?
Just to be sure I fully understand, Harold, let me ask this.
ReplyDeleteASAN, obviously, is the "autistic self-advocacy network," which implies that those people involved are and should be SELF-advocating. That is, they should be thinking and acting on their own behalf.
There are people who, apparently, are LFA and also capable of articulate self-expression (folks like Amanda Baggs, for example). In theory, they would be appropriate LFA self-advocates.
So, is it the case that you would like to see ASAN include non-verbal, LFA individuals on the board of ASAN? Or is it the case that you want greater representation from the PARENTS (or representatives) of people with LFA?
IMO, once you say open the doors to "representatives," you're changing the whole focus of the organization. Autism Speaks (among other organizations) includes ONLY representatives on its board... and among those are representatives of kids/adults with LFA.
Why not allow ASAN to follow its own mandate and include only self-advocates?
IMO, it's a bit like asking an organization for deaf self-advocates to include the hearing parents of deaf children.
Yes, parents have plenty to say about raising children with disabilities. But the reality is, unless they are also disabled they simply aren't "self-advocates."
Lisa
Lisa
ReplyDeleteJust to be clear:
1)I do not agree with you that Amanda Baggs is low functioning. If you want to have that discussion some time fine.
2) With respect to representation of low functioning persons with Autistic Disorder YES parents, or if parents have been replaced by other legal guardians, the guardians who actually know them and are legally entitled to represent them SHOULD do so at ASAN meetings. Failure to have legal representatives sit on the ASAN board in place of low functioning autism persons means those persons would not be represented, would have no voice, in an organization which purports to speak on their behalf.
3) If ASAN does not agree with that it should change its name and stop presenting itself as a organization which represents the entire autism spectrum of disorders which it clearly does not.
Lisa you are an impeccably courteous commentator on the autism blogsophere but your bias towards the high functioning autism perspective has always been present.
YOU speak on behalf of your child on your web site. What permits you to do that? Your status as a parent raising that child?
What your experience does has not permitted you to do is to understand the realities faced by persons with low functioning autism disorders including those with serious intellectual disabilities. Please stop trying to do so and please ask your friends at ASAN and on the Autism Hub to stop pretending to represent low functioning autistic persons. They do not.
@ Lisa "Why not allow ASAN to follow its own mandate and include only self-advocates? "
ReplyDeleteFor clarification, I am on the ASD spectrum and I'm a parent to a LFA person. This is why I was once a member of ASAN's list (I say once because I have now been removed from ASAN as of this morning).
AS and AD have little in common from my experience as a person with AS and as a father to a child with AD. Unfortunately, the ASAN board doesn't wish to recognize these differences and extend their "outreach" on policy discussions to those with knowledge of LFA and intellectual disabilities. After requesting that a LFA person be consulted on issues affecting their community, I was told by one board member publicly that "we shouldn't accept people (LFA) unqualified or incapable of handling the responsibilities of board membership, we shouldn't practice 'affirmative action'". There was an expectation that no one with LFA could perform any "duties".
ASAN is, as its critics contend, an organization made up almost entirely of very high functioning persons either self diagnosed or diagnosed with AS.
I don't even find the board very representative of the AS population (typically unemployed and dependent on either the state or family). Having folks with HFA on the board is not the problem. Its the exclusion of those with moderate to LFA that is the real problem for me.
Neurodiversity is starting to "crack" from the idea of full inclusion of all autistic persons. Last year, the president of Autcom, an autistic person centered policy group, saw its president, Sharisa Kochmeister, resign over the actions of board members to deny a LFA person from its annual conference in New Hampshire. In her resignation letter, Ms. Kochmeister said that she could no longer attend or remain as president of Autcom because she could not support excluding autistic people that the board simply disagreed with politically. This autistic person that was expelled has spent time in DD institutions and could have provided a very good resource for the needs of the LFA community in terms of housing, social services, issues surrounding guardianship, AAC and other issues. This person was real and I was able to verify it through decades of "official" paperwork. The Autcom entrance community had requested that she prove who she was (LFA) and as a result, she shared the same information with me.
Several months earlier, Autreat, Jim Sinclairs "autistic friendly" conference also excluded a LFA person over their beliefs surrounding ND. Both Autreat and Autcom now have litmus tests one must pass to be considered acceptable. The diagnosis or self diagnosis of autism is only a part of that litmus. Personal beliefs are now far more important than simply being autistic.
What has sprung up within ASAN is a sort of cult of personality surrounding Ari Neeman. No one can be allowed to disagree with him without coming under intense backlash. What this does is not create an organization for institutional change, but simply a mechanism for one person to move his particular agenda forward. The list of expelled and ostracized autistic people and or parents of AD children just grew today. I suspect this purge of me will continue to others in the future. ND's organizations are cracking under their own philosophy.
Lisa Jo-if you think think Amanda Baggs is for real than you are even more pathetic than I thought.
ReplyDeleteDiscrimination is common among families that have lots of children. Its parents responsibilities to bring up children without any discrimination
ReplyDelete"So, is it the case that you would like to see ASAN include non-verbal, LFA individuals on the board of ASAN? Or is it the case that you want greater representation from the PARENTS (or representatives) of people with LFA?
ReplyDeleteIMO, once you say open the doors to "representatives," you're changing the whole focus of the organization. Autism Speaks (among other organizations) includes ONLY representatives on its board... and among those are representatives of kids/adults with LFA.
Why not allow ASAN to follow its own mandate and include only self-advocates?
IMO, it's a bit like asking an organization for deaf self-advocates to include the hearing parents of deaf children.
Yes, parents have plenty to say about raising children with disabilities. But the reality is, unless they are also disabled they simply aren't "self-advocates."
Than why is ASAN trying to get an autistic person on the board of directors of Autism Speaks? If you include a very high functioning self-advocate person with Asperger's on the board of Autism Speaks who does not want to cure autism and find them vile than you are changing the whole focus of the organization.
Since when is Autism Speaks an organization that wants very high functioning "self-advocates" who do not want to cure autism on its board of directors?
Harold,
I wrote an example of me "changing my brain" for the better, that the problems I experienced were not caused by society and could not be fixed by society, that I required medical treatment for a medical disorder: Here.
Thank God I got proper medical treatment because the problems I had were ones society could NOT fix.
Stephanie
ReplyDeleteI have no problem with ASAN having a total self advocate approach as long as they don't pretend to represent the low functioning, the intellectually disabled and the cognitively impaired on the autism spectrum.
I live in Indiana with a child on the low functioning end of the spectrum. Sadly, this is the case for us too.
ReplyDeleteThat, and the ignorance of so many of what the definitions of high and low functioning really is. Working in my son's school taught me the hard way. HFA doesn't mean completely functional. Children can be classified high functioning and still have severe learning deficits, trouble speaking and inability to focus on a task. It blows my mind to learn that a segment of the world would want to be identified as autistic if they don't have it. It's never cool. It never will be.
I am the Mom of two boys who have been diagnosed on the autism spectrum. Our youngest was diagnosed with Autism when he was around 2 and our oldest diagnosed with Asperger's a few months afterwards at age 8.
ReplyDeleteI am also an Aspie (did not know this until I was 40) and although I am adopted, I have had the opportunity to have some contact with my biological family and there are many traits of autism on both sides.
I want to be a positive advocate for my children, for myself and for the autism community but when I see such conflict, difference of opinion and hostility among people in the community (affected themselves or as parents / caregivers), I realize that my words have to be chosen extremely carefully so as not to be misintrepeted or to accidentally offend.
I relate with the concept of trying empowering oneself and one's children no matter where they are on the autism spectrum.
I guess I believe that we should try to love ourselves and our children for who they are, where there are currently at this point in time in their life journey.
I don't want to come across Pollyanna-ish because I deal daily with the struggles of parenting children on the spectrum while trying to deal with my own issues.
I see often that parents of children with LFA don't think that parents of children with HFA or those who have HFA / Asperger's themselves can relate. I agree that appears to often be the case. People look at things from the perspective of their own life and life's experience. WIIFM - What's In It For Me or IAAM - It's All About Me.
My point that I'm trying to make but not doing so good of a job being succinct about is that there ARE people with HFA / Aspergers that do want to see care, treatment, empowerment and higher quality of life and functioning for ALL on the spectrum.
I often wonder what life will be like for my 3 1/2 year old... what it will be like for my 10 year old and how I myself will function when I am older.
I wish you the very best in getting the answers you need to help your child and yourself live the best possible lives you can.
"squishy" diagnosis! Never a truer word!
ReplyDeleteThe entire organization of the spectrum makes no sense to me. I have a friend whose child I help with in school. He's PDD-NOS which is of course the "I dunno" diagnosis. He barely walks, will not talk. I don't think he actually has autism, but is rather undiagnosed with something equally hard to pinpoint. His results are the same. No real difference in treatment.
Here the label "autistic" is frequently applied to help the family obtain the waiver services they need, otherwise I don't think some of our kids would be labeled at all. My son shares many symptoms with Parkinsons patients. I don't believe we should quit researching, but how can we research this really? It's a hodgepodge. And the terms high and low functioning help had to the confusion. I've been in the school of mild, moderate and severe for a long time.
I would have preferred someone just say, your child has severe neurological disorder. Anything to prepare me for the years ahead. Instead, we got a pie chart of the spectrum. That was a great help. At least, severe means something.
You are a level-headed voice in a sea of nonsensical babble.
ReplyDeleteAll those self-proclaimed "aspies" want to be identified with Einstein and Temple Grandin. They cringe at being lumped along with those on the low end of the spectrum who screech, bite and fling their own feces. Many of these self-diagnosed aspie snobs probably don't even have Asperger Syndrome -- they're just slightly brighter than normal folks who don't want to blame themselves because they have a hard time making friends.
I used to teach autistic children and it was not a "beautiful difference" or a "special joy." It was a very hard life for my students and their parents. Every one of those parents would have sold their soul to have their children able to talk and make friends and plan for their own futures. I'm shocked by the parents who blog about how they wouldn't want their kids to be neurotypical "because that's not who they are." if my child was blind I would want him or her to see.
Autistic kids can be absolutely wonderful and I'm sure I'd love a child if he had autism but I wouldn't see it as a blessing.
"'...being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.'
ReplyDelete"For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic..."
It's even easier if they refuse to acknowledge that Einstein was an activist who strongly opposed anti-Semitism, anti-black racism, etc. instead of "intellectually disabled at tasks requiring verbal skills."
"...My daughter can't even judge a person if their bad, good, whatever, everybody to her is a playmate, therefore; if she is being robbed or god forbid raped, she has no defense, no understanding of what to do or what is going on!..."
ReplyDeleteThat's horrifying!
Also horrifying is the possibility that if she gets attacked (whether raped or some other way), the *attacker* could be excused "because he can't help it because he has Asperger's/Autism." For examples:
http://blisstree.com/live/hans-reiser-and-the-aspergers-defense-troubling/
http://www.wrongplanet.net/postxf83001-0-60.html (the "But if he WAS unaware, why are you so angry [about him raping you]?" part)
http://letters.salon.com/mwt/feature/2009/03/26/bauer_autism/permalink/5bd7aa93436c989458e31068b4a5ef7e.html
http://kd4dcy.net/blog/?p=570#comment-35714
http://life-with-aspergers.blogspot.com/2010/02/some-thoughts-on-intolerance.html
http://kateharding.net/2009/10/08/guest-blogger-starling-schrodinger’s-rapist-or-a-guy’s-guide-to-approaching-strange-women-without-being-maced/#comment-113570
http://kateharding.net/2009/10/08/guest-blogger-starling-schrodinger’s-rapist-or-a-guy’s-guide-to-approaching-strange-women-without-being-maced/#comment-113588
"Many of these self-diagnosed aspie snobs probably don't even have Asperger Syndrome -- they're just slightly brighter than normal folks who don't want to blame themselves because they have a hard time making friends."
Exactly!