After Jenny, With Charlie, and Lots to Hope For
October 21, 2007 by Kristina Chew, PhD
Filed under Health
So what do you think: Are we living not in the “age of autism” (the title of a series by UPI journalist Dan Olmsted) but in the “AJ Age,” “After Jenny”?
Jenny being, of course, Jenny McCarthy, the autism mother who has written a best-selling memoir and who has been on the airwaves everywhere trumpeting her (according to today’s Chicago Tribune) “unusual message”: “There is hope. Autistic children can recover.” Another message from the newly-minted TACA (Talk About Curing Autism) spokesperson: “‘ “I’m really coming out on my own and saying things that no one has been able to say: Autism is treatable.’”
It saddens me that anyone would think that saying “there is hope” in regard to autism is an “unusual message.” I and many others have certainly been saying this; of course, us lacking McCarthy’s celebrity, notoriety, and a few other things, it is not at all surprising that linking autism and hope would sound “unusual” to some. I ought also to note that the reasons I believe there is hope in regard to autism are not because a child can be “recovered” from autism or even because “autism is treatable.” I know there is lots of hope for autistic children and persons and not at all because I have found some wonderful, maverick, courageous, practitioner of biomedical interventions including detoxificaction via chelation and infrared saunas and extolling the virtues of hyperbaric oxygen treatment and getting that candida out of my kid. There is hope not even because there are so many therapies and treatments available, so much more understanding.
Hope for me doesn’t start because some other person has told us “do this and he will stop flapping his arms and will make eye contact.” Hope for me starts with Charlie, my son who has autism; a great kid, a patient and sensitive kid, who has taught me to listen to things I didn’t know were being said to me, to see that I can be most wrong when I think I am most right, who tries the hardest of all to do what is asked of him—-and because he’s Charlie, born autistic and with such a different way of interacting, interfacing with, and being in the world. He is wonderful, a maverick in many ways, and certainly courageous.
Consequently, Jim and I do sometimes joke that there once was a time “B.C.” (”Before Charlie”). Now it is completely impossible for us to imagine what we would do without Charlie: It’s not an easy life and there are plenty of challenges. But life is full and rich and—thanks to Charlie—-full of hope.
Very well said. I had hope before Jenny did the talk shows as well. Rebekah has given us hope, as well as her teachers nad therapists. Her slow but steady progress has been all the hope that we need. She is not like our other two at all, but she is loving and generous for those in our lives who have taken the time to get to know her they have all said she is a joy. easy never but a joy all the same. I think that you are either a glass halk full or half empty person and when you throw a child with autism into the mix it is no different. i have always tried to look for the positives in my life and with Rebekah and Autism it is no different. Thank You for writing this so well and bringing light to the fact that we do not need Jenny to have hope.
Like mums, all i hope for is for my son to be happy.
Many parents who first listen their child has autism, would be relieved to here “there is hope”. And when I say hope, I mean “recover”. Let’s not be hypocritical about it, we all want our children to recover, or be cured, or get rid of autistic habits, or I don’t know how else you would like to describe it. But, the point is, that no matter how much each one of us loves his child and wouldn’t change it for a non-autistic one, we all want our children to be NT. And that’s what we are trying to do with all these therapies. We give a child speech therapy in order to make someone who has no interest, or not the ability for language, to talk. We give them occupational therapies to enforce the correct use of pens in order to draw and write, or the “right” way of using one’s body, when he is obviously unwiiling to do so. We make them look us in the eyes, answer back when asked something, be social and so many other things which all aim at one and only target : changing them! So, how can we say we accept them the way they are and we wouldn’t want them to be different, when this is what we are trying to do with all these therapies?
I, like you, am my son’s greatest fan, the way he is. I can’t get enough of him, nomatter how hard it gets some time. But, I know that as a parent I have the major obligation to prepare him to live his life among other people INDEPENDENTLY! And it’s really devastating to know that most probably I want be able to do that. Therefore, I think it’s simply irresponsible to say ” I wouldn’t want to change my child, I love him the way he is”. Come on! What will this child be like when he’s 40 or 50? Do whatever you can to help your children overcome autism, it’s your obligation!
I think I can help my child live an independent life and not change that she has autism. The progress that she has made has made us relize that no only is it possible that one day she may be in a regular classroom but that she may be able to attend college if that is what she wishes. I do not want to cahnge her. help her learn and continue to progress, absolutely. I think it is a matter of how you loook at autism. I believe that no matter how much progress Rebekah makes she will always have autism. There will always be a part of her that is quirky and socially awkward. Some view autism as adisease that needs to be cured or recovered from I see it as part of who she is and that she will always have no matter how much she may seemingly fit in she will always have those things that make her autism. I believe this because there are so many of the traits that she has that other members of our family have just not as severe or all of them. I do not want to change her I want like I do with my other two children for them to be the best that they can given the unique strenghths and challenges that they have.
Julie,
How is that different from what I said? You want your daughter to “progress” and you say that she does. Does this mean she talks better, or improves academically, or is more social? All these are against her autistic nature and she was forced to achieve them, therefore changed her! And what about these children that will never progress and will never be able to live independently? Would we say that there is no hope for an autistic child unless he progresses and, hence, be changed? The fact that we cannot change every autistic feature in a child, doesn’t mean that this isn’t what we are trying to do with the “help” we are giving them. Many autistic children lose their diagnosis as they age. They may always show some autistic habits, but then again, so do many NT people. It is a matter of degree and density that makes the difference and when somebody loses his diagnosis that means that the degree of autistic habits has decreased significantly. Then again we can say that he has “changed”.
I think there is a difference between changing your child, and helping them improve abilities which will help them meet their goals. Maybe it is a subtle difference, but I think there is one between someone who is giving their child therapy because their goal is to change their child and someone who is giving their child therapy because they think their child would be happier with it.
I think, athina, that therapy should be viewed much like education. After all, wouldn’t the same argument apply for a NT kid regarding school? We want them to learn and use certain things, so we subject them to it, even if it might be considered “against nature”?
Having gone through ABA and progressed in the ability to socialize, I would say I’m fundamentally the same person, but also a person with a whole new skill set than I had before.
And I take very serious issue with the “residual” concept, because the person does not become NT. No, I am a very different person than an NT, but that doesn’t mean I can’t socialize and all, though I’m not always inclined to it the same way. I have new skills. I haven’t changed in the sense you are speaking of. I still fundamentally think like an autistic, prioritize like an autistic, feel like an autistic, and live as an autistic. Language has not, and will not, change that.
“Changing” people, in terms of which you are probably thinking, will not occur. Will they gain skills and some different habits? Yes, but they will still think as they did relative to their age as before.
Cliff
I think that the difference is subtle and maybe only in the way I view Autism. My goal in givivng my child therapy and educational intervention is not to cure her or have her progress to the point where she would no longer qualify for a diagnosis. It is to help her be the best that she can be with the autism and to help make life easier for her. I do not care for the word cure because I believe that it is a developmental disorder and can not be cured no more than someone with downs syndrome can be cured. I do believe that they can be taught and progress. She will never be able to do what my sons do so easily but she can have an independent wonderful life with the autism.
Wow, another AutismVox “Jenny” putdown? If only she had taken an ND position on autism. The ND Hub would now be singing her praises.
Donna,
I think you’re only playing with words. All parents with a healthy conscience would like what is best for their child. If I wish that my son wasn’t autistic, that is for his sake, not mine. I thought I didn’t have to say that, as it is so obvious. So, no matter how one describes it, intervention aims at changing an autistic child’s nature.
Cliff,
You don’t really know how yoy’d be like if you hadn’t received a bunch of therapies. So, how can you actually tell you are the same person? You admit you socialize more and despite what you may feel and think inside your head, you exhibit a different attitude (I don’t know you, this is how you describe yourself). Well, to me, this means you have changed. If you had been left alone, probably you would be much different in that sense. As for the difference between autistics and NTs, all I can say is that I know many NTs who behave more “autistic-like” than my son. I often wonder about myself, as well. Typical children receive education which is NOT against their nature, but, on the contrary, adapted to it. That’s why autistic children often, not always, resist their therapies : because what we ask of them is against their nature and, as you said, although they may finally comply to our demands, deep down they think differently.
athina: I don’t think I am playing with words. I would compare it to NT kids who have intense training or experiences; some parents do it mostly for the kids and some do it mostly for themselves. Like stage mothers who push their kids beyond what is good for the child, or the parents of kids in sports who become so focussed on winning that the kid isn’t having any fun anymore. I don’t think it means that these are horrible people, but it may mean that they have lost sight of the most important goal.
Athina,
Yes, I can remember pre-ABA. No, it was no different, relative to my age. And I may have had a different attitude due to surrounding circumstances, but surrounding circumstances do not yet make a person.
And, no, I disagree that general education is “in their nature”. What propensities one toward science naturally? Mathematics? Oddly, mathematics are perhaps something, and even science, where where the NT is less “in nature” than a HFA. I don’t really see anything to support this claim.
And to the assumption NT children always are complacent to teachers, you are highly undervaluing the job of the teacher, who indeed needs to make connections in certain ways for the subject manner to remain interesting. Resistance is part of teaching, though I won’t say that ABA is as easy, it’s not different really either but for some degree.
Cliff
Harold, we hardly know ye (et vice versa)! Thank you; a recent post also referred to Don Imus.
My sense is that there is no “recovery from autism” and it will be interesting to see how McCarthy’s son develops (not, of course, that she need share this). Certainly a child can learn more and more thanks to all of the teaching methods and therapies available but I like to think not of “no more autism” as a goal, but as helping a child do as well as they can; achieve as much as they can.
Be honest, I worry about McCarthy’s kid. What an expectation to live up to! I went through two parents who had been convinced I had “recovered”, and they were fairly accepting of the fact, but there was significant resistance to the idea.
But he has it worse in that regard. At a minimum, McCarthy’s aired his recovery on national television, and it seems has more concrete views regarding autism as something to at least eliminate. I can just see from experience a potentially major conflict between the two.
Cliff
My son is almost 10 1/2 now and he is very clearly different and disabled. But when he was 5 years old, I did think he might be mainstreamed; I thought he would soon be reading books (he always seems to be “just getting it” with the flashcards). He still seemed just “a little behind.” The story has yet to be written about McCarthy’s Evan and for Charlie too—-certainly there is hope for all, and much more so today than in prevous eras.
Cliff,
I don’t think there is any point in going on like this. All I am trying to make clear is that it doesn’t matter how you name it, we all aim at the same purpose regarding our children. When you’ll become a parent you’ll understand what I mean and probably, you will understand your parents’ attitude.
Jenny is an autism-mother, like many of us writting in this blog. Why can’t we just keep that and forget that she is a playmate, a stripper, a drug-dealer or I don’t know what else. She made a choice regarding her son’s therapy, as it was her legal right. She came out an talked about it. What’s so wrong with that? Can’t we just sympathize with her fight?
I think the sympathy is there and also find McCathy’s self-transformation of note.
Athina, what’s “wrong with it” is that it’s a negative view and one that is not shared by all parents. You can speak for yourself and perhaps other parents that you agree with. You certainly can’t speak for me.
” Let’s not be hypocritical about it, we all want our children to recover, or be cured, or get rid of autistic habits, or I don’t know how else you would like to describe it. But, the point is, that no matter how much each one of us loves his child and wouldn’t change it for a non-autistic one, we all want our children to be NT.”
This sentiment I disagree with completely. You see, when I was pregnant my husband and I “wished for” a child just like us. We didn’t know anything about autism or Asperger’s, with exception to the 80’s and 90’s episodes on Oprah, and Rainman. We did say out loud that we didn’t want a child that we now refer to as “NT”. Speech therapy isn’t about “overcoming” autism but more like ESL, English as a second language. I still utilize cartoons and sign language to augment communication. IEPs and enrollment in special ed don’t gain us therapies or treatment. They keep the school staff from doling out punishment when my son doesn’t fit in or understand them or their methods.
I don’t feel I must antagonize McCarthy, really. I do think that some of her actions may have contributed to circumstances that may make life harder for autistics and their families, but I don’t feel ill will for the woman herself for her history.
And, athina, I’m not playing with words here. There are actually some very different motives in these words. One speaks of a full abomination, creates an evil to vanquish. Another speaks of understanding and potential with the child as he is. That’s nothing slight from my perspective.
On the other hand, I do not damn those who antagonize autism, because it is a conclusion that, when faced with the alien, is common and human. I do not feel as if those people are meaning ill, at all. Though I find McCarthy’s message potentially very dangerous, I wish the best for the woman, so long as it doesn’t harm many along the way.
On a secondary note, I would be careful in assuming my parents now. My parents were resistant, but note the past tense. When I could fully explain myself, they realized that removing autism from me was not a goal that was needed or desired. We obviously don’t agree on everything in regards to autism, but more in that regard than you suggest they would.
Oh, Kristina, it’s true that McCarthy could well be wrong on the status of her kid. Either way, though, he’s still going to be autistic, and that’s still going to me a conflict of some kind waiting to happen.
Cliff
Well, maybe I’m wrong and there are actually people who are happy to find out that their child is autistic! I thought that this wasn’t possible!
KimJ really said everything I was thinking. I do not want my son to be NT. I want him to be happy and live to the best of his ability (as I want also for my NT son and try to give this to both of them through education) but I would not want him to no longer be autistic.
Any therapy I do is so that he can be his very best. Just as I would give speech therapy to a child with a lisp, I also gave speech therapy to my autistic son to help him with language.
Just as an NT child would recieve help in learning to write his name if he had trouble, I give my autistic son Occupational Therapy so he can learn to write.
Just as I would discipline my NT son for negative behaviour, I also teach my autistic son the difference between right and wrong.
If either of my children have medical issues I take them to a doctor. There are no food allergies in my family, but if there were I would approach it exactly the same way with both my children. I wouldn’t approach it as an allergy with my NT son but a cause of autism with my autistic son.
Ok, I know I’m rambling. I’ll stop now.
Well, I’ll be candid…when we got the diagnosis, I absolutely wanted to see if we could get our girl to being like her peers, and I even admit some considerable degree of self-interest in that. I have to say that we didn’t feel the degree of certitude that I more often hear now in re: how to get there.
But, things standing where they are, we are where we are at, and the hopes and wherefores are what they are, and yes, there is still hope, just of a different variety. Mostly things are pretty good, I believe for all of us in the family, and it’s take each day as it comes and do the best you can with it.
It was relief I felt when I knew that Charlie had autism. He was just about to turn 2 and there were so many things he could not do that other children did—talking was just the start of it—-and he struggled so much, and I (as I realize now) was to. Every seemed a question mark and when we asked for help, in those early days, there only seemed to be more question marks. Like Regan, I initially thought there might be some way or ways to change my child out of this condition—-and it was in the slow, every day experience and process of teaching and living with Charlie (and a hundred happy moments, a hundred more tough and awful and worrying) that I learned to see that autism is part of him; that I came to understand that he was born as he is and that there is some core thing—I can’t quite say what it is—-that is very uniquely Charlie and it could be described in regard to autism. But this whole mindset has evolved over time; hindsight is more often not useful than not, I find, but (for myself) I would have like to have been able to be more honest and realistic about Charlie earlier.
I’ll quote Regan: “Mostly things are pretty good, I believe for all of us in the family, and it’s take each day as it comes and do the best you can with it.” Truly so.
Kristina,
I wouldn’t describe my life with my autistic son as awful, either. There are many really great, happy moments in our everyday life that make us extremely happy and thankful to have our little angel in our lives. But, my experience has been quite different than yours. My son’s diagnosis was no relief to us, to me. There may have been some signs that something was not right, but he seemed to develop so normally and nothing suggested that he had autism. He started talking even before he was 1 year, he walked on time, he made a lot of and appropriate eye-contact, he pointed, there were no odd movements etc. My husband only recently accepted the fact that our son is autistic, while my in-laws still think there’s nothing wrong with the child and that I am exaggerating! I was the fisrt to come to terms with the child’s condition and I had to face a series of attacks by other family members because I was saying “all these horrible things” about the child. My son will be 4 in two months. I really can’t predict what his life will be like or if and how he’ll progress (I very well know that he may not). I’ve accepted that. But when he wants to do something and he just can’t, when he wants to say something and can’t find the right words, when he wants to be near other children and doesn’t know how, when other children put him down and you can see in his face that he gets so frustrated and devastated, that I can’t accept. All these break my heart and I feel so sad about him. And it is this I want to change, this is what I want him to get rid of and it is autism that causes it.
Having sat on that “devastated” end, athina, I would think that what I would have hoped for is that people accept me for who I was. I would have wanted people to think of me as me, even if I had difficulties that other kids had.
I just finished reading one of my journal entries I had written two years. It recalled that it was the lack of acceptance, though much more implicitly than we’re quite getting at here, that lead to me thinking of myself as inhuman and invaluable. It was that feeling that difficulties warranted getting rid a part of me that hurt most, and the result was admittedly not productive for anyone.
I mean, is it frustrating to try and work within social areas of life with autism? Yes, it is, and it’s a whole lot of personal work. But autism really is so much more than that, to such a degree that I would find that to revoke what I know of as autism from me would be a horrible thing to me.
But I’ll be a little pointed about this. It wasn’t acceptance from my parents I cared about most. It was from my own parents, and that was not a guarantee in my life, despite their best intentions. And that hurt the most.
Cliff
Err… two years ago, when I was a high school freshman, in regard to the journal entries, but they were recalling when I was in third grade.
Cliff
Athina, from what you’ve written about your child, I think your relations are right. You don’t feel well about his label. Then forget it! 20 years ago, everybody would consider him an NT. Even the most neurotypical 4-year-old is at least 10 times a day in the situation “wants to do something and just can’t”. And if other children put him down, is this his fault? No, it is their fault. And, if this happens in a classroom, teacher’s fault. Children are little beasts. I don’t see any use of wishing improbable things just to appease the beasty nature of small children. Things will improve as he grows and matures. You say he may not progress. He will.