Susan's Blog

Wednesday, November 18, 2009

Who Speaks For Whom?

It’s fascinating and frustrating to me that people on both ends of the spectrum — from “High Functioning”/Aspergers to “Low Functioning”/their caregivers — sometimes cannot get along. Both tend to be dissatisfied with the kind or degree of attention they get. I want the infighting to stop.

From what I can tell, it appears that the HF autistics, those who can fairly readily communicate, whether by keyboard or verbally, feel that they ought to be given a seat at the table — or in fact, the head of the table — of mega advocacy organizations like Autism Speaks. This group feels that organizations like AS focus mostly on the downside of autism, particularly visible in the “lower-functioning” members of the spectrum (you can include Nat among this latter group), because it is easy to elicit attention and funding with the problems of the LF autistics. The HF-Asperger’s believe that this presents a skewed and negative view of autism, and causes people merely to aim at curing and stamping out autism, rather than learning about what it is like to actually be autistic, the uniqueness of this neurological makeup, and most of all the necessity for society to accommodate and include. The HF-Aspergers group often want to emphasize that autism is a part of them, it is an aspect of who they are, and to hate autism is to hate part of themselves, which is devastating, debilitating, and a dead end.

Many parents and caregivers of LF autistics, (like me) by the way, also feel that AS emphasizes the negative of autism, as they did in this latest video, and make our wonderful kids seem like horrors, and turn our lives into a pity party rather than looking within at the complex, layered, family lives we lead. Nor does AS try, in videos like I Am Autism or Autism Everyday, to interview autistics themselves to get an idea of what their (multiple, infinite, human) perspectives are.

Often parents and caregivers of LF autistics, however, also believe that they require the attention of groups like AS because that is how they are going to get help in the end — through this kind of private-sector fundraising. (I am far more a believer in public programs, which should be better funded, so that they can do what they are meant to do). This group of LF-autistics’ caregivers believe that the HF-Asperger’s group do not really understand their concerns, their lives, which are largely given to taking care of, educating, managing, financing therapies of, their autistic loved ones. The LF-concerned group sometimes believe that autism has devastated their lives and their children’s, and mostly because there are very few paths that lead to helping them. The behaviors that occur can be terrifying, violent, and destructive. They can also be exhausting, mind-numbing, and depressing, as in the case of children who are not potty trained, who can only eat one kind of food, who run away. People need to understand this. Difficult behavior is not the only aspect of autism, or co-morbid aspect of autism to be more accurate, but it is a huge problem, for autistics and their families and if Autism Speaks can help with this, then that is a good thing.

But — what is the nature of the help they give? Is raising awareness enough? Yes, if it actually leads to strong lobbying for insurance coverage of autism therapies. Yes, if it leads to more money to support families, job supports, group home care. Yes, if it leads to giving the more socially able autistics an opportunity to guide policies affecting autistics.

If AS is only making the public terrified of autism and flu vaccines, then they will only be adding to our problems as a society. We will see a resurgence of terrible diseases, far worse than H1N1.

The high-functioning autistics do deserve to lead the conversations at Autism Speaks’ table, right alongside the LF-autistics’ caregivers. Autism Speaks must listen to the full spectrum and not just the terror of some caregivers. (Or else they should rename themselves Autism Speaks For Some.) But the HF-Aspergers group must be responsible representatives and be sure they are truly representing the interests and problems of those on the spectrum who are less able — or if they work hand-in-hand with the caregivers who understand firsthand the issues for their loved ones.

If we could all work together, a round table where there are no closed minds, and stop all the exclusion — imagine what we could do.

16 comments

I hope a lot of people stop by to see this post. (glad to hear Nat's birthday was ok, even with the evolving changes in attachment and emotions. Hope the virus/cold passes soon!)

— added by Patrick on Wednesday, November 18, 2009 at 3:34 pm

I find the HF autism people to be the most damaging b/c they cannot understand the difficulties at the other end of the spectrum. They don't want to be recognized as being part of a spectrum that includes non-toiletted, head slamming, destructive adults. Go through the Hub… there are posts upon posts wrt this.

Autism has the good, the bad and the ugly in it. Those that find it overwhelming… and until my eldest learned appropriate behaviour it was UGLY… and it was overwhelming. I didn't need to be told to "suck it up" that I was the same as a KKK parent with a black kid (Hub post which I've found has been deleted)… I needed support and that includes those HF's.

I am not a fan of any Autism organization. They all have their own agenda's are rarely are they the same as mine.

— added by farmwifetwo on Wednesday, November 18, 2009 at 3:44 pm

Ths article says so much. I've worked with kids/adults with autism for almost 30 years, mostly with the LF bunch. They have my heart and I can honestly say that each and everyone of them, in their own unique ways, and changed my life. That said, my own 13 year old niece was recently diagnosed with mild Asperger's and there is absolutely no comparison. She will live an independent life, she will go to college, probably several, and will not have life long needs.
I wonder if it is a symptom of the disability itself that prevents teh HFA individuals from understanding? Part of what makes them who they are is an inability to feel/see from the perspective of another?
And as for the crowd that believes that all behaviors can be handled with antecedent management/functional communication have never seen a child sitting playing with a favorite toy one minute and running head first into a window the next, splitting his/hear head open.
I very much agree, let's all be part of the same picture.
Michele

— added by Anonymous on Wednesday, November 18, 2009 at 6:41 pm

Because of a widespread sotto voce disapproval among Neurodiversity activists, of discussing the very serious and often life-threatening nature of High Functioning Autism, many parents and carers of severely affected children never learn of the often devastating consequences of the condition.

[His blog was removed from the Autism Hub as soon as it got a bit 'ikky']

We seldom see the reality of life played out recently and so frankly as on Zachary Lassiter's blog – which has detailed his traumatic, downward spiral into repeated suicide attempts, hospitalisation and prison-time during his tumultuous relationship with his expectant girl friend.

The Autistic Self Advocacy Network, whose activists are almost exclusively High Functioning, make it explicitly and abundantly clear that it is their duty to represent the whole of the Spectrum – and that they have done, are doing and will continue to do.

I would ask for a similar commitment from the parents and carers.

You say:

The behaviors that occur can be terrifying, violent, and destructive. They can also be exhausting, mind-numbing, and depressing,….People need to understand this

We do.

And we ask that you acknowledge that the same words can rightly describe the day to day life for many of us.

Zachary's life bares witness to this truth.

— added by Socrates on Wednesday, November 18, 2009 at 7:30 pm

Beautifully said, Socrates. I had hoped that I had given a balanced view, but I see that there is even more to it.

— added by Susan Senator on Wednesday, November 18, 2009 at 7:37 pm

It is unfortunate that you discount vaccines like this as they are the cause of so much of the increase we have now. If you deny that I feel for you.

— added by Anonymous on Wednesday, November 18, 2009 at 7:50 pm

I don't completely discount vaccines; there may be a small percentage of the population whose genetic makeup is impacted by an outside agent — like a vaccine or a virus contracted during the pregnancy. I just don't believe that the breadth of the spectrum is explained by vaccine injury. I think there are many many ways that autism is manifested.

— added by Susan Senator on Wednesday, November 18, 2009 at 8:04 pm

You know, I abhor the terms hf and lf. Really and truly, it makes my skin crawl. And, to my mind, it makes little difference because if we look at quality of life indicators (abilty to maintain employment, live independantly, develop emotional relationships, etc.) I would like to know by what degree the two "groups" are separated. I suspect that if there were ever any really good studies done we would find that these two groups are more alike than you might think by merely looking at issues like speech and daily living skills.

— added by Christine on Wednesday, November 18, 2009 at 9:28 pm

You're right, Christine. I abhor the terms, too, which is why I place them in quotes. I don't buy into it. But there are differences, I believe, because of the social factor, the abilities to communicate with others; if for no other reason because of how others will then treat you.

— added by Susan Senator on Wednesday, November 18, 2009 at 9:33 pm

Recently, Autism Speaks held a "walk" in Portland, Oregon. They raised over 700 thousand dollars, and took it back home to their headquarters. Geri Dawson's salary is 600 thousand a year. AS gives back only 4% for "family services". (It's in their public records, you can check.)

They claim that most of their money goes to "research" and awareness. That research is aimed at developing a pre-natal test, to "prevent and eradicate" autism. Those are Suzanne Wright's own words.

Autism Speaks does not speak for US!

— added by Clay on Thursday, November 19, 2009 at 1:28 am

Susan, you probably know what I'm going to say. All of this disjointed conversation and wildly vacillating points of view can most effectively addressed in only one way. Everybody needs to check their egos at the door, all have the right to air their opinions, and let the discourse speak for itself. Whistle when you're ready to make it happen.

— added by Don on Thursday, November 19, 2009 at 9:00 am

Susan,

I found a good run down of the sort of life issues people with HFA/AS typically encounter without diagnosis and support. It's pretty damn grim:

Digby Tanam's take on Shiny, Happy Aspies:

Age 11-13 Surge of anxiety-related problems including
*OCD
*dysmorphophobia
*panic disorder

Age 16-18
*Secondary depression *social phobia

Age >16
*Progressive social withdrawal often attributed to schizophrenia
*Late adolescence bipolar disorder
*Brief ‘cycloid’ psychoses
*Non-psychotic hallucinoses

Age >18 ‘Catatonia’

Age >25 Paranoid states

Age >35
*Social withdrawal
*isolation
*relationship disrepair

— added by Socrates on Thursday, November 19, 2009 at 9:08 am

I understand your frustration. I almost feel "guilty" at times that my son is mild. I wonder if I belong here.

The other side of the coin is, all autistics have something in common. No one can explain the disabling features of blindness realistically who isn't blind. (I know that's awfully simple.) My son's BEST teacher and psychiatrist were ADHD/Aspergers themselves. I can't reiterate that enough. They were _leaps and bounds_ above the rest, and I believe that is solely attributable to their nature being similar to his. There were no "communication problems" between them. He wasn't seen as "behaviorally disordered" to them, as he was the rest of the world.

If we have only non-autistics on the boards of autism groups, with no experience in autism, the trajectory of autism study will be set back 100 years. We'll go back to electric shocks for sake of brevity. Hey, they work. So does ABA, in a way. Yet, I feel there is something better on the horizon if the less afflicted take part in the discussion.

— added by r.b. on Thursday, November 19, 2009 at 9:27 am

S.,

If I can get time/executive functioning sorted, I'm going to do a post on the less often seen side of HFA/AS.

— added by Socrates on Friday, November 20, 2009 at 12:18 pm

Socrates, (I love the fact that I am actually talking to Socrates, one of my all-time philosophical heroes, up there with Plato and Camus), I hope you do post that. People need to be shown many, many times before something blips onto their radar screen.

— added by Susan Senator on Friday, November 20, 2009 at 12:19 pm

Thanks for this. I agree with Socrates that the problems of those with HFA/Asperger's are sometimes not understood, or minimalized as "poor social skills." I was never formally diagnosed with Asperger's, but I have three relatives who work professionally with autistic people, and they all think I have it, which confirmed my own suspicions. When I was younger I had many OCD tendencies, and some behaviors that were obviously "stimming" in retrospect. I pulled out eyelashes and ate non-food items like pencils (!) and crayons. I couldn't tie my shoes until I was ten. I still can't drive a car. I have panic attacks sometimes.

I am college-educated and have friends and a decent job, but it would be wrongheaded to imagine that the effects on my life have been minimal.

I don't mean to sound negative; I do think autism also brings many positive things to my life. When other autistic people say the same thing, I hope they are not dismissed because "they must not have any serious problems."

— added by Laura on Sunday, November 22, 2009 at 10:51 pm

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