Neurodiversity on Good Morning America

11 Jun

Ari Ne’eman and Kristina Chew were interviewed for a segment of Good Morning America that aired today. Ari Ne’eman is the president of the Autism Self Advocacy Network and Kristina Chew writes the AutismVox blog.
NIH director Tom Insel was also interviewed.

Ari Ne’eman noted:

“Anti-cure” doesn’t mean “anti-progress”.

Unfortunately, the idea of “anti-cure” gets a lot of attention and I can understand why a news show would latch onto it. I personally see this statement as more important:

I can’t think of a civil rights movement thoughout history that hasn’t been faced with resistance and misunderstanding on the part of it’s detractors.

That’s what this is–a civil rights movement. A movement to say, “people are people”. It isn’t about autism: there are six billion different places on the spectrum of humanity, each spot filled by an individual who has rights and deserves respect. Some of the places on the spectrum need more support. Some, much more support.

It is not the “burden” of society to care for those with greater needs, as the situation is often represented. No, it is the responsibility of those with greater gifts to offer support to those other full members of society who are in need.

Kristina notes that “she is not suffering”. But, she goes on to note that parents need better supports and services and education for their kids. Who can argue with that?

Tom Insel, director of NIH notes that there are people with very great challenges on the autism spectrum. For those he states:

“…for whom we would love to have a cure, to at least get them to a point where they would be able to function as well as the people in this movement.”

Dr. Insel, thank you. Let’s help people make progress. This sounds very much like a neurodiversity parent who has stated:

What we wish to do is help them to grow to a point where xe can make such a choice. And make no mistake, if a cure was ever developed and if xe wanted it, I would ensure xe got it.

But, again, I think people will latch onto the “cure” question. The point as I see it is to help people make progress. The point is that especially for those who don’t make much progress, let’s make sure that they are given the supports be they physical, social, whatever it takes to live their lives with dignity. We are in the early stages of a civil rights movement.

20 Responses to “Neurodiversity on Good Morning America”

  1. Ivar T June 11, 2008 at 18:46 #

    Kinda think “anti-cure” was just a word that was supposed to counter the “cure-above-all-else” idea, there’s more middle ground now.

    Not that the question of cure is anything but philosophical question as there’s no clear cut definition of cure.

    I have often parallelled the question “What is God?” and “What is cure?”.

  2. Mand June 12, 2008 at 01:59 #

    The words need to change. Words like “suffer” and “these people.” I’m so tired of hearing that our children suffer from autism. I’m tired of hearing that they “have” autism, like they “have” a pair of shoes, or toast for breakfast. They are autistic. That is the person that my daughter is, the way she experiences the world. What’s wrong with that? I am proud of her for that and I have raised her to be proud of that. She is an autistic person – she doesn’t put on her autism when she gets up in the morning. She doesn’t suffer, and she doesn’t need to be cured, or “defeated.” How offensive. I will make sure that no-one or nothing will ever defeat my child, and she is being raised to believe the same.
    It’s like suggesting you will cure someone of their skin colour. You don’t see a movement “Defeat Blackness Now.” It would never be allowed to occur.

    I know others will disagree – it’s more PC to separate the autism and the person. I don’t think it’s that simple. In my experience living with an autistic person, it’s never that simple.

  3. lacshmiybarra June 12, 2008 at 02:29 #

    Mand,

    What about the numerous autistic kids that are “suffering?” What about the ones that smash their heads into the side of a car and scream, “help me, please help me?” Or, practically bite their arm off periodically because they cannot stand the way their head “feels”? Perhaps, there really are different “autisms” and you’re just as guilty of assuing your child’s lack of physical pain means that no child has such problems.

    So, maybe your child always had problems “relating” and you are perfectly fine with that. However, when a child is often and unpredictably in agony, that is PAIN, are you going to ignore them? Would you ignore your own pain?

  4. Sullivan June 12, 2008 at 02:54 #

    However, when a child is often and unpredictably in agony, that is PAIN, are you going to ignore them? Would you ignore your own pain?

    No one thinks any child, autistic or not, should be in pain.

    No one would have anything against finding the cause of that pain and fixing it.

    I think you will find that many people don’t consider medical conditions, say those that cause pain, to be a part of autism. Now, that can (and has and will be) argued over and over. The net result doesn’t matter on whether it is or isn’t a part of autism: treat the medical condition.

    While you are at it, treat or help the individual with autism overcome the challenges that are clearly autistic. But, why I ask, do so many people fight the idea of changing society in order to make it easier for the individual with autism overcome challenges?

    For me, the idea of a cure is needlessly divisive. There isn’t a cure. There isn’t a cure in trials. There isn’t a theoretical cure.

    All it really does is give certain groups a handle for keeping the division going.

  5. Ms. Clark June 12, 2008 at 03:04 #

    Being in pain all the time and biting to the point of injury etc is not part of a autism itself. Extreme cases are likely to be kids with some genetic disorder like Lesch-Nyhan syndrome, so I wonder if some of these kids who get pulled out and displayed as worst-case scenarios (or worse, misrepresented as if this was typical of ASD) are even autistic or rather are they are mentally retarded and have a particular genetic disorder and have been diagnosed as autistic in order to get certain services.

    I don’t doubt that autistic kids and adults sometimes head-bang and have self-injurious behaviors, but if you put them in less stressful situations, these things are less likely to occur. If you provide a person with a way to communicate and real understanding they are less likely to occur. And conversely if you put the kid in a horrible situation (such as where they are bullied by siblings and schoolmates) they are more likely to occur.

    But not all ASD kids have these problems. If they did self injurious behaviors alone would be diagnostic of autism, and self-injury is not diagnostic of autism, though, it is diagnostic of Lesch-Nyhan, for instance.
    http://www.ninds.nih.gov/disorders/lesch_nyhan/lesch_nyhan.htm
    The sad thing is, if a kid with a serious disorder like this showed up in a quack’s office the quack would likely start chelating the kid instead of sending his parents to a geneticist and excusing himeself from abusing the child with IV vinegar and garlic and worm egg pills or whatever.

    So the majority of parents do not have these kids with the really scary symptoms, I would guess that these “worst case” kids represent a very small fraction of ASD kids. Any particular child may fully belong on the autism spectrum, but it’s totally unfair to come along when people say “My kid is happy. My kid is not in pain.” and try to say that the parents of those happy and healthy autistic kids don’t understand and further imply that the extremely difficult-to-care-for kids are the norm for ASD. This is just false. The majority of ASD kids and adults have PDD,nos and Asperger’s and the a good portion of the “autistic” kids and adults are “high functioning”.

    Certainly alternative therapies are not what kids with self-injury need and vaccines don’t cause autism of any sort.

  6. lacshmiybarra June 12, 2008 at 04:07 #

    Ms. Clarke,
    You have no clue what you are talking about.
    Go google up some info honey

  7. HCN June 12, 2008 at 04:52 #

    lacshmiybarra, Google is the worst place to find information of this type. Could you provide documentation that self-injury is a common part of the autism diagnosis, please?

  8. Ms. Clark June 12, 2008 at 05:30 #

    Google what “info” sweety?

  9. Ms. Clark June 12, 2008 at 05:52 #

    Apparently there has been an epidemic of self-injurious behaviors. This page lists lots of mental disorders that are associated with self-injury, I would think that they are mainly referring to teens and adults.
    http://www.palace.net/~llama/psych/diag.html

    http://www.athealth.com/Consumer/disorders/selfmutilation.html
    Self-Mutilation

    INTRODUCTION

    Suyemoto and MacDonald (1995) reported that the incidence of self-mutilation occurred in adolescents and young adults between the ages of 15 and 35 at an estimated 1,800 individuals out of 100,000.The incidence among inpatient adolescents was an estimated 40%.”

    Interesting.

    Google is great.

    I haven’t found a percentage of ASD kids and adults who self-injure yet. I started in pubmed.

  10. HCN June 12, 2008 at 06:56 #

    Ms. Clark, I believe that is information that lacshmiybarra should provide. You do have that data, don’t you, Mr/Ms lacshmiybarra ?

  11. HCN June 12, 2008 at 06:57 #

    Oh, wait, I forgot to say:

    Please provide all verifiable cites, Mr/Ms lacshmiybarra.

  12. Mand June 12, 2008 at 09:26 #

    There are of course interventions that we use to make her life easier – the GF/CF diet for example, helps her concentration and focus. We use OT and some medication to help her with emotional regulation. Again, this makes her life, and our family’s life, easier.

    Does that mean we want to cure her, or believe that these dietary or medical interventions are even capable of doing so? Of course not. That means we recognize she has challenges in her life, and that our job is to help her cope in a neurotypical world. I am on medication for things too. I change my diet if it makes me feel better. That doesn’t mean I want to be cured of myself. There is just a recognition that there are areas where I need help.

    There seems to be a need on both sides of the debate to speak in absolutes of black and white – either autism is a “terrible, hideous” thing that our children “suffer” from, or everything is hunky-dory. The fact is, it’s all shades of grey. Our children are wonderful, fascinating, complex people, with many gifts and many challenges. Autism is a spectrum and many people on the spectrum have more challenges than others. Does that mean they should not exist? It’s a slippery slope, once you start going down the road of cures and genetic testing. Who has the right to exist? Who is a valid and useful human being?

    The fact is, your child is your CHILD. And your friend with autism or Aspergers is your FRIEND. They also are autistic. Be proud of them.

  13. Ms. Clark June 12, 2008 at 10:38 #

    I have seen where people describe autism as a death sentence, devastating, etc, but who describes it as “hunky dory” or even all good all the time? Even people who describe it as “not a disability” are realistic about the difficulties that they and/or their children experience. I happen to be very happy to say that all ASDs are disabilities. I think that’s realistic. I also think that a big part of the every day disabling problems of autism are under the control of “normal” people and society in general.

    If those “normal” people would stop expecting the wrong things of autistic people and start appreciating and even “exploiting” the right things about autistic people, the disabling aspects of autism would shrink, though it’s debatable I suppose if they would ever entirely go away.

    My ASD kid is quite significantly impaired by autism, but also experiences some gifts because of autism. I think the same is true about myself, though I’m less obviously impaired than my child is. Being less obviously impaired has it’s own problems. People expect more and are more likely to expect too much.

  14. Mand June 12, 2008 at 12:29 #

    “Hunky dory” was a poor choice of words. I still think that there does seem to be a tendency to be B&W on both sides – people get defensive, as we have seen in the past couple of days as people grapple with the idea of “civil rights” and “autistic pride” movements. I do know that the concept of “curing” is a very neurotypical one, driven mostly by parents wanting to fix their kids. I understand that parents can feel hurt and grief stricken, and find it difficult to accept their child’s diagnosis. I think that trying to fix or cure their children by making them no longer who they are is not realistic or helpful, to themselves or the child.

    I feel confused about my own feelings with the concept of impairment and disablement. I know that autism can be disabling, and for many people it is significantly disabling. My child goes to a special school, so I am familiar with intellectual disabilities and special needs. The fact that my child is in a special school shows that autism can be disabling and challenging. But most of the problems we have had with our child have been caused by other people and lack of support – in school etc.

    I read a wonderful story to my child tonight – “Autistic Planet” by Jennifer Elder. The child’s experience of her autism is not disabling or negative – I thought it was awesome.

  15. Joseph June 12, 2008 at 15:03 #

    Being in pain all the time and biting to the point of injury etc is not part of a autism itself.

    I bet that children with those behaviors are more likely to be a lot of things, not just autistic. They might be more likely to be left-handed, for example. Should we go around saying that left-handedness is a horrible thing on that basis?

  16. Margaret Romao Toigo June 12, 2008 at 17:07 #

    My son doesn’t suffer from autism, but he does occasionally suffer from not getting things he wants but isn’t allowed to have, taunts from his siblings, having the computer crash on him, and having to do things he must do but doesn’t want to do (such as taking a bath).

    My neurotypical children also suffer from all of these things, and the only difference is that they whine and moan and perform melodramatic gesticulations, instead of simply throwing themselves on the floor and screaming.

    Kids. You gotta love ’em.

    Seriously, though, my son doesn’t seem to suffer from autism at all. In fact, it appears to fill him with great joy — and over such simple things, like scrolling movie credits — most of the time. When he’s standing high on his tiptoes and flapping his arms and making strange noises, he’s the happiest child I have ever seen.

    Sure, he has challenges with everyday living skills, and he’s not much of a conversationalist (though he can verbally communicate his basic needs), but in his own way, he is better off than just about any of his neurotypical peers in that he is free of social anxieties, finds pleasure in the simplest of things, and never seems to suffer from boredom — an affliction of which my neurotypical children often complain (especially since school let out).

  17. Regan June 12, 2008 at 19:40 #

    Being in pain all the time and biting to the point of injury etc is not part of a autism itself.
    ——————-
    A large percentage of SIB is shaped and maintained by socially-mediated contingencies (other people’s reactions) or things that could be changed in the environment, or have a mixed function, so to assume that it is, de facto or solely, something within the person or strictly biochemically mediated might very well be an erroneous assumption.

  18. Ms. Clark June 12, 2008 at 21:20 #

    Margaret R-T wrote:
    “Seriously, though, my son doesn’t seem to suffer from autism at all. In fact, it appears to fill him with great joy—and over such simple things, like scrolling movie credits— most of the time. When he’s standing high on his tiptoes and flapping his arms and making strange noises, he’s the happiest child I have ever seen.

    Sure, he has challenges with everyday living skills, and he’s not much of a conversationalist (though he can verbally communicate his basic needs), but in his own way, he is better off than just about any of his neurotypical peers in that he is free of social anxieties, finds pleasure in the simplest of things, and never seems to suffer from boredom—an affliction of which my neurotypical children often complain (especially since school let out).”

    This is very close to my experience watching my two children “suffer”. I’d say that my NT kid has “suffered” a lot more than my ASD kid. (And NOT because of having a sibling and a mom who have ASD.) My ASD kid has had to put up with pain from surgeries and different things, but always took it like a trooper with a good attitude. The same kinds of difficulties would have made my NT kid downright cranky if not desperately depressed for long periods of time.

    My (adult) NT kid faces difficulties in this world that most NT people face, finding a good job, figuring out where to live, figuring out relationships, though my NT kid has normal intelligence, practically perfect health and strength (and is tall and nice looking) and has been since birth.

    My ASD kid has loads of challenges and probably could never live independently without loads of help. So far I provide all that help and without complaint. My ASD kid is a joy to be around, so is my NT kid, though I think I spend more time worrying about the NT kid’s problems than the ASD kid’s problems.

    Full disclosure: I did some “head banging” for maybe a few months as a kid, but it wasn’t hard enough to hurt my head, I just liked the sensation of “thud”. When I was about middle school age, I used to bite my hand just to see the impression my teeth made on my hand. It never damaged the skin or left a bruise. Actually, I still bite the side of my index finger sometimes hard enough to leave a mark for a minute or so. My ASD kid has never done anything like self-injury.

  19. S.L. June 13, 2008 at 04:55 #

    Margaret Romao Toigo said: “…he’s the happiest child I have ever seen.”

    It’s funny you should say this. Today my daughter’s OT said “She is HAPPY, like really happy, wow.” My daughter was full of energy and just utter joy. Her happiness was contagious, I could see it in the OT’s eyes. Mind you, 10 minutes prior, she was on the floor screaming and having a rough day. But, wow, you get this kid happy–and it is all sunshine and giggles, flapping and jumping, circling and dancing. My other (NT) daughter is happy quite often–but I’ve never seen her (nor any other child) have such happy moments as my autie-girl.

    It’s a shame we’re not supposed to find any joy in that.

    On the self-injury…it’s more propaganda for the pro-cure group. Autistics hurt themselves, are out of control or utterly disconnected, and are incapable of love, etc. That’s how they’d like the world to view the spectrum.

    My daughter went through a head-banging phase when she was not quite 2 (banging the tile floor, cabinets, etc.). Curious though, that “behavior” ended when we began seizure treatment (perhaps she was trying to tell us all something???). Granted, there are ASD individuals who do injure themselves–but there are also PLENTY of non-ASD people who do this too.

    If you go to that horrific Judge Rotenberg Center (SHUT IT DOWN!), a lot of the letters (supposedly by parents) I read said their kids had ADHD, OCD, depression, etc. and they had self-injurious behaviors. I was a “cutter” as a teen. For me, it was an escape from what was going on in my life, and also there was an aspect of control too. There are books on “self-mutilation” and so on, it has become quite common in the last 10+ years. Again, not associated with ASD.

  20. Mand June 14, 2008 at 00:15 #

    “Seriously, though, my son doesn’t seem to suffer from autism at all. In fact, it appears to fill him with great joy”

    To Margaret, who wrote the above, I agree. My daughter is a very happy child. I think if you accept your child and do not raise them in an atmosphere where they have fifty biomed “cures” shoved down their necks every day (and that is not an exaggeration – it happens. I have heard of one kid who was taking 70 pills a day to “cure” her autism), they will be a happy child. That’s not rocket science.

    I figured out what I don’t accept about the word “disability.” I think as a parent it can be a useful word. It can get me the support I need, the funding I need, access to government agencies I need to help me give my child and my family some of the things we need. There’s nothing wrong with that. We have challenges and difficulties. But I would never use that word to my child. I would never tell her she has a disability. And therein lies my discomfort with that word. She knows she has autistic. She knows that certain things are more difficult for her, and goes to the school she does, as a result. She also knows that she has certain skills because she is autistic. Our family and our child has accepted and embraced that word and that diagnosis. But to sit down and tell her that she has a “disability.” Much different, and I am not comfortable with that.

    When she is older she may choose to use that word. But I won’t be the one to push it on her and her concept of her self.

Comments are closed.

%d bloggers like this: