Christina Adams’ “Levels of Autism Mommies (and daddies)” and “recovery”
“The Wonder of It All: Ten Months In,” Chapter 23 of Christina Adams‘ A Real Boy: A True Story of Autism, Early Intervention, and Recovery, contains a typology of “Autism Mommies (and daddies).” At the start is the “Special-Needs Parents,” then the “Upgrade Crowd,” then the “Autism Mommies,” and finally “the highest category: Autism Super Mommies” (pp. 189-190). Adams distinguishes among these four “levels” of “Autism Mommies” based on how many interventions (educational, biomedical, and otherwise) the parents use, how far they go in challenging if not battling their school district, how many hours their home programs have, how many specialists they consult.
It is true, that all parents of autistic children vary as widely in the decisions they make about their child’s education, therapy, and treatment as there are variations on the autism spectrum. There are parents who attend every DAN Conference possible and do every biomedical intervention in the book. There are parents who think Floortime is the best educational program for their child, and parents who decide an intensive ABA program is the best choice, and parents who believe that ABA infringes on their child’s human rights. There are parents who conclude that a residential placement is the best situation for their child.
What ties us all together is autism and the love of our children. We are all in this together. And Adams’ “levels of Autism Mommies (and daddies)” is not only divisive, but disturbing.
While Adams categorizes herself as “only an Autism Mommy” on the “Autism Mommy Spectrum”—-rather than as an “Autism Super Mommy,” “A hair-thin category, for it takes a watchdog-fierce personality, advanced domestic science skills, a river of money and time, and a formidable brain” (p. 190)—her description of what she does to recover her son Jonah from autism is what her “Autism Super Mommy” does in A Real Boy: A True Story of Autism, Early Intervention, and Recovery.
“You can’t will your child to recover,” Adams writes in chapter 39, “Survivor’s Guilt: What Is Recovery?”, “but if you don’t he probably won’t” (p. 308). When Adams notes that she has “survivor’s guilt” and that she feels “‘terrible that all these people aren’t getting—’”, she is reassured by another mother, Greta, that “‘You worked so hard for this. I would love to get recovery and if I did I wouldn’t feel guilty at all. Enjoy this!’” Adam notes that “if I could climb a mountain and bring recovery home for her, I would” (p. 306). Adams refers simply to “recovery” here as an end-goal in and of itself.
Adams is somewhat elusive about what she means by “recovery” (as I noted in an earlier post, Recovery: More reflections on autism semantics). On the one hand, she shows herself repeatedly disbelieving yet grateful when various doctors, eductors, and other professionals say to her the equivalent of “I can’t believe that your son had an autism diagnosis” (see. p. 304). On the other hand, she mentions several times that she has read books by autistic authors (while not always specifying which ones) and has met autistic adults at an autism conference (p. 272 ff.). And she even notes that her “Super Mommy traits” reflect nothing less than “the best of autism”:
The drive, the compulsion, to problem solve, the ability to latch onto a topic and find out everything there is to know about it. I have the single-minded, perhaps discomfiting focus on saving my child and helping other families to do the same……
If I have become an Autism Mommy, it’s because Jonah is a shining example of what life with autism can be. (p. 191)
If there is so much to emulate about autism, why does Adam portray herself—the “Autism Mommy” who is working so hard to “get the great gift of recovery”
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POSTED IN: Autism Lit, Books, Diagnosis, Family, Language, Parenting, Rhetoric, Stereotypes, Treatment
25 opinions for Christina Adams’ “Levels of Autism Mommies (and daddies)” and “recovery”
mom-nos
Aug 16, 2006 at 11:36 am
Bizarre categories. How confusing - and what an incredible waste of her time and energy (not to mention spirit). I’d have to say I’m a “Not Even Wrong Mommy” - I feel like I’m working on a whole different problem with an entirely different set of parameters.
Note to self: add title to list of books to avoid.
Jannalou
Aug 16, 2006 at 12:31 pm
Because that’s what sells books right now.
I’m thinking about passion right now - all areas of my life - and I’m planning a post about it for later today. I suspect it has some bearing on this and other issues we of the Hub have been writing about lately.
Kristina Chew, PhD
Aug 16, 2006 at 12:57 pm
It’s the literary marketplace, one might say……… and my parameters, too, are of a different nature, entirely.
Penny
Aug 16, 2006 at 1:53 pm
Competitive parenting is an ugly sport–whether it’s on the Little League field or in the therapists’ waiting room. I’m glad to stay in the recreational leagues myself–and I suspect my kids prefer it, too. We may not win the kind of trophies Adams values, but we have a lot more fun.
Ashley
Aug 16, 2006 at 2:18 pm
I can see how this type of book isn’t for everyone, myself included. Dramatic accounts on any topic just don’t do it for me. But what is clear, is that books like this inspire some parents into action that help their child. Isn’t that a good thing? One parent, no matter what she has to say, inspiring another?
Often it’s for the the wrong reasons - for recovery, and making “this all go away”. I only wish all parents read it for the right reasons, a format that helps them find that special blend of services for their unique child so he/she can reach their potential.
As Kristina always says, Autismland isn’t easy for anyone, and it’s each parent’s business what they use as a coping mechanism, a way to get there.
Jannalou
Aug 16, 2006 at 2:19 pm
Fun is a Good Thing! :)
I’m tired of competition, personally… I just want to live my life without comparisons.
And that includes the ones I make myself.
Kristina Chew, PhD
Aug 16, 2006 at 2:25 pm
I think the notion of “recovery” contains an element of “competitition” in it and dividing up parents into categories—-without considering more of the circumstances that may result in their being at one of Adams’ “levels,” such as single parenthood, economic resources, educational background, and so much more—-is counter-productive. Certainly a book like Adams can inspire, as can many others—again, we’re on a “spectrum of parenthood” ourselves—–but, whether we take joy or sigh our way through autism every day, I see us altogether at the end of the day, and the journey, and why put labels of parental ability on ourselves?
Sometimes it is too much fun with Charlie, if that’s possible!
Daisy
Aug 16, 2006 at 2:48 pm
Categories of parents? Levels of parenting? I am a very involved parent, and I speak the lingo because I am a teacher. I wonder where that puts me? I probably don’t want to know. Thank you for the review — I think I’ll avoid this one.
Ashley
Aug 16, 2006 at 2:51 pm
Point taken Kristina. I interpreted her explanations as campy when I first read them - another way to explain this “spectrum of parenthood” to newly diagnosed parents. I like your description! I’d be surprised if Ms. Adams intended them to be competitive. I thought she was poking fun. But hey, that’s me!
Jannalou, as always you inspire me!
Kristina Chew, PhD
Aug 16, 2006 at 3:13 pm
Ashley, I can see the “campiness” (in the opening portrayal of herself as “SuperMom” or “WonderMom,” perhaps). We all deal with enough stares and blame and shame—-we share so much more than we are divided by the “categories” Adams describes.
Ashley
Aug 16, 2006 at 3:44 pm
True true true.
Phil Schwarz
Aug 16, 2006 at 10:21 pm
We opted out of this kind of ugly rat-race long ago, and are much, much happier for it. Jeremy will get just as far as he would have if we were rats-in-the-race, with much less erosion of stomach lining for all concerned.
Lisa/Jedi
Aug 17, 2006 at 7:53 am
This “competition” is one thing that makes it very difficult for us to network with other local autism parents. Even at B’s school, which is an alternative school (not exclusively for kids with special needs but wonderfully set-up for them), where you would think there would be more like-minded folks, there is great vatiation in the way families perceive & treat their kids with autism. My current thinking is that the shame associated in our society with having a “different” child is what sets up these labels in the first place. It’s as if, if you work hard enough for “recovery”, you can obliterate the shame in the eyes of others. Our culture does not yet place a high value on accepting people for who they are & on their own terms. That is the real shame…
Kristina Chew, PhD
Aug 17, 2006 at 9:46 am
Lisa, I’ve sensed that “competitiveness” and I can see where it might be coming from, but it is very hurtful, to say the least. The fact that Charlie has minimal language, difficult behaviors, is “behind” academically—is not at the “mild” end of the spectrum—-has sometimes seemed to create an invisible wall separating him, and us, from “hfa” kids and their families. I do not think some parents do this intentionally; everyone faces a lot with their kids and feels to see a child struggle. And more and more, I’ve been able to converse with other parents of kids all across the ASD spectrum (and ADHD and ADD kids too) and felt that we share so much more than we differ.
And that, while we do differ, that we do need to stick together!
Autism Vox
Aug 17, 2006 at 10:48 am
[…] Yesterday I wrote about Christina Adams‘ “levels” of special needs parents in chapter 23 of her book A Real Boy: A True Story of Autism, Early Intervention, and Recovery (see my post Christina Adams’ ‘Levels of Autism Mommies (and daddies)’ and ‘recovery’). Her categorizing of special needs parents, and in particular of the parents of autistic children, into four “levels” (Special-Needs Parents,” the “Upgrade Crowd,” “Autism Mommies,” and “the highest category: Autism Super Mommies”) smacked of “competitive parenting,” as one reader commented. […]
Ashley
Aug 17, 2006 at 2:01 pm
Lisa, your poignant description about shame and society is a sad reality. Very true in my life as well what you describe. I’ve had discrimination to deal with from fellow ASD parents, because of Leo’s current presentation. And for Leo, I’ve had to protect him from the ignorance of “typical” parents.
I agree, I think many labels are created by or for those that don’t understand Autism. “A place to start” as one blogger commented (I forgot the name) when discussing other labels like HFA and LFA.
Kristina Chew, PhD
Aug 17, 2006 at 8:33 pm
My post on LFA and HFA is here:
http://www.autismvox.com/lfa-and-hfa/
mom-nos
Aug 18, 2006 at 9:06 am
Ashley, I agree that we definitely need more parents inspiring parents. I haven’t read this book, and mine is a completely uninformed judgment (so take it with a heavy dose of salt.) I think I reacted strongly to Kristina’s description of the “categories” because I’ve met parents whose intensity is overwhelming to me. I posted about it once on my own blog - meeting a mom whose son was younger than mine, who with full confidence and authority told me that our school district was horrible and if I really wanted to do what was best for my son I should be doing xyz… I was completely intimidated and overwhelmed and for a while I walked around feeling like a parenting failure. So I *guess* you could say she inspired me - but not in a good way. Anyway, there is some context for my reaction.
Ashley Morgan
Aug 18, 2006 at 10:55 am
Makes sense MOM-NOS. Thanks for sharing and clarifying!It’s never fun to feel like a parenting failure. I admit I’ve done this to others in the past as well. Out of passion, out of single-mindedness, I’ve been hell bent on my days, and judgemental. For me personally, my intention going off on some diatribe about ABA or something else has never been malicious or to make myself feel better. The love for these children, my utmost desire to see them get the support they deserve has and is always my fuel. I keep learning from my mistakes. I’ve alienated a few newly diagnosed parents by being “overbearing” and too much of a straight-shooter. Over the years, I’ve mellowed. I am more aware that I must focus more on the perspective of that person, attempting to make it more palatable when delivering unsolicited, or solicited advice or opinions. A challenge! The love for our children raises all kinds of emotional states.
FYI, you actually have intimidated me, and made me question myself as well! In a good way, and I’m sure I’m not alone. Whenever I think of the Boobahs(sp), I crack up.
What I like best about A Real Boy: it’s the only recovery book that details how most parents don’t one-stop-shop. They often utilize a blend of supports and treatments from the biomedical and therapeutic categories. Being open to various options, a smart thing to do when you’re new and just learning.
Also, as an FYI she’s a writer by trade. As a writer, who wouldn’t want to write about Autism??I’ve met her in person and spent several days having incredible conversations with her. So I can say, her intentions are pure - you just can’t fake it over that long of time. What is clear is that she absolutely adores her son, ASD and all. She’s got a happy healthy boy, like all of us on this string (or girl!). I celebrate her milestones as well, and I celebrate that she does, for SOME, inspire.
mom-nos
Aug 18, 2006 at 12:00 pm
That’s a great point, Ashley. None of us would be so passionate, or effusive, or driven if we didn’t love our children so completely. Thanks for the insight on Adams. Sounds like the book should go back on my “to read” list.
And, oh my goodness - you’ve found me intimidating? I apologize, for whatever it was and however it happened. I often feel like I’m making my way through this whole parenting thing with a paper bag over my head, so I don’t by any means think I’ve found “the answers.” Maybe at times I sound that way because I love my child so completely… :-)
mom-nos
Aug 18, 2006 at 12:01 pm
P.S. Kristina, the sign of a great post is when it sparks discussion like this. Thanks!!
Ashley Morgan
Aug 18, 2006 at 12:27 pm
No apologies necessary, NOS. You aren’t responsible for my feelings, as I’m the one with insecurities (I’ve always wanted to be more academic). And, it wasn’t over one topic - your blog as a whole is magestic, as is Kristina’s.
Your comment, “paper bag over my head” cracked me up! Reminds me of a comment Leo made yesterday. He was asking me all about who his first friends were and how he met them. I told him technically his first friends were from a Mommy and Me class in NYC as an infant. Leo said, “Wow, I’m sure you had to take a lot of classes on how to be a mommy. You had to learn so much since I was born first”.
And I second the comment about Kristina’s incredible posting.
Kristina Chew, PhD
Aug 18, 2006 at 11:09 pm
(blushing at too many too kind comments)
We’re all on a spectrum of autism parents/mothers too—-all in “it” together.
Storkdok
Apr 22, 2008 at 6:37 am
Kristina, I’m a day late and a dollar short…but I want to put my 1 cent in, for all it is worth!
I tried to read Ms. Adams book, and I got a few chapters in and just had to put it down and then away. I had a very disagreeable feeling to it, just sort of visceral…I thought something was wrong with me, but everything you all have said here is what I was thinking, so I am glad to know I am in good company!
Since then I have never read another “recovery” book again. I moved on and read books by autistics and books on specific themes on how to help Alex, the Tony Attwood, Jed Baker, Social Thinking types.
Competitive parenting is nothing new, but it is disheartening to find in the autism community. We do have a lot more similar than different. I have never been one to presume to lecture someone on a specific therapy or method, I just answer questions if people ask what we are doing. But even then, I have had people jump down my throat, when I told them I wasn’t doing this or that because we felt it wasn’t for Alex. I’m not judging anyone on what they do or don’t do for their child. Parenting shouldn’t be a competitive sport. We are all in this together.
Kristina Chew, PhD
Apr 22, 2008 at 9:15 am
I just was writing something last night about how it’s not the Autism Parents Olympics!— we all win by acknowledging there’s a lot of commonality. (Which is not to say we can’t agree to disagree about many things, I think.)
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