the ones in the lab coats

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Autism is a pervasive development disorder (PDD), a group of illnesses that involve delays in the development of many basic skills, most notably the abilities to socialize or form relationships with others, to effectively communicate, and to use the imagination (including fantasy play). Children with autism and related disorders often are confused in their thinking and generally have problems understanding the world around them.

In addition to problems with social interaction, imagination, and communication, children with autism also have a limited range of interests. Many children with autism (nearly 75%) also have mental retardation. In many cases, children with autism are unable to emotionally bond with their parents or other family members.

WebMD

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Yes, that’s what it actually says on WebMD. For real. There are so many things wrong with that don’t even know where to start. But how about here …

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Tasha the Backyardigan and her family, as imagined by Brooke.

You’re welcome.

Please feel free to write to the good folks at WebMD. Seems that someone needs to tell them a few things. Like that autism is a not an illness, that it’s pretty damned offensive to say that people with autism are “confused in their thinking”, that 75% of people whose IQs are tested using methodologies akin to testing an English speaker in Swahili will likely ‘fail’ such tests, and that saying this …

“In many cases, children with autism are unable to emotionally bond with their parents or other family members.”

… is as misleading as it is reckless.

Parents of newly diagnosed kids may be reading this before they see anything or talk to anyone else.

That’s terrifying.

Four years ago, I had the opportunity to speak to a neuropsych class at MIT. This is part of what I wrote following my talk.

I told them about the disastrous experience with that first neuropsych. The one who somehow found the magical power to prognosticate in the bevy of degrees on her wall. The one who told us after a two-hour meeting with her that our then three year-old would live a solitary life. The one who saw my beautiful baby as a set of limitations. The one who could have leveled a parent with less conviction.

Perhaps, I told them, a different parent would have looked at the white lab coat and the pretty Harvard degrees and said, “Oh well. I thought I knew my little girl, but I guess I was wrong. I suppose there’s no point in trying to change who she is. I mean, Harvard. She must know what she’s talking about. No point in trying to make my baby what she’s not.”

I told them the fabulous story I read not long ago. Forgive me, I can’t remember where I saw it, so if it was on your blog, please tell me. In the meantime, I’ll take some license with it if you don’t mind. It was a story about a child with freakishly long fingers. His parents were terribly upset by his deformity and they brought him to a renowned specialist seeking his help. The specialist gasped when he saw the child. “My God,” he said. “This is amazing. He has RJ Syndrome.”

The parents were in a panic. “RJ Syndrome? Doctor what does this mean? What can we do to help him?”

The doctor smiled and told them that the boy was likely to be a musical prodigy. He told them how incredibly lucky they were to have been blessed by the rare and wonderful RJ Syndrome. They ran home and bought him a violin. They found the best piano teacher in town. Their home was filled with music. They would help to foster the talent that they now knew he must have.

Years later, the parents sat in a full music hall watching their son, the virtuoso perform. They recognized the man next to them as the doctor they had seen so many years before. They re-introduced themselves and reminded him that their son had been diagnosed with RJ Syndrome. He looked at them blankly. The mother prodded, “You remember, his long fingers?”

The doctor laughed. “Oh, that? I made that up. I just didn’t want you all to feel badly about his fingers. I guess it all worked out.”

It’s all about perception, I reminded them. You can tell me that my child has challenges but may well also have the ability to do something amazing or you can file her away under what you see as her limitations. How you choose to see the world matters. Especially when you’re the one in the lab coat.

Click HERE to send WebMD an e-mail.

Because they’re the ones wearing the lab coats.

How they choose to see our children matters.

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This is how I choose to view mine.

If you’re on Twitter, tweet the following and I will retweet:

“Nearly 75% of kids w #autism have mental retardation” @WebMD This is INACCURATE + DANGEROUS. Here’s why: http://wp.me/pNO8N-3fy @diaryofamom 

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Edited to add:

PLEASE understand that I, in no way, shape nor form, mean to imply that there is anything to be feared in having a child who is indeed mentally challenged, nor that people with intellectual disabilities have any less potential than those without.

Intellectual differences are just that – differences. They do not change one’s dignity, one’s humanity, one’s ability to love and be loved. 

All that I had hoped to convey is that we can never make *assumptions* regarding our children’s intellectual profiles, their capacities to learn, to love, to connect, to play, or to imagine in the absence of accessible testing. There is so much about our children that we don’t know – that we don’t yet have the means to know. But it is equally important to ensure that just as we don’t want anyone making assumptions about people with autism, we never make them — or allow anyone else to make them — about intellectual disabilities. 

I sincerely apologize, from the bottom of my heart, for any inadvertent implications to the contrary in my post and I implore those of you commenting to bear this note in mind when you do. Thank you.

Jess

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26 thoughts on “the ones in the lab coats

  1. I can’t even begin to express how upsetting that is. What is wrong with the people over there? This is why the internet is such a scary place, especially for parents of newly diagnosed children.

  2. My autistic son (Mikey) IQ tested at 68. The school psychologist chuckled when she went over the results with me and explained that the number was just that – a number. That she knew he was brilliant. That the test was not ‘fair’ to those on the spectrum. Not one medical or school professional has looked twice at his score. They have all disregarded it because, luckily, they know the test was in English, not “Mikeynese”.

  3. This is still out there?! About 4 years ago I remember reading WebMD while researching Autism. I read the part about mental retardation, freaked, and decided that my son could not possibly be autistic because he didn’t fit that description. It is dangerous, indeed. I will be retweeting. This is just grossly unfair to autistics…and parents who are looking for information.

  4. Hey Jess. Thank you for pointing this out. As a parent, I spent a year hitting the wall of this kind of false information about Autism, before I started getting to the truth of the matter, the truth of my sons. I never believed the lies all the way, thank goodness, and I continued seeking, seeking, seeking. Adult Autistic perspectives have made all the difference for us. Thank goodness for them most of all. And it has been another solid year of me learning true Autism. Still, after all I have done to heal myself in this same time, I get so angry at the WebMDs of the world. I guess that is where I am now. I’ll use my anger to write them directly.

  5. This IS annoying. I’m going to post my comments here and also in your post, and also in the thread about posts, just to prove I can be as annoying as you.

    Also…That picture of Tasha’s family is SPOT ON. Don’t tell Brooke, but Tasha is my least favorite Backyardigan because she’s a little too hoity toity for me. I TOTALLY see her big brother (unless she’s dressed like De-BOR-ah from “The Voice” and is actually a big sister) in a bowtie.

  6. I just sent them an email! That is horrible their definition! Its just sad nobody takes the time to understand autism especially “professionals” my little guy who is 4 and autistic was in the hospital a month ago on our pediatric floor he is very sensitive to taste so of course he wouldn’t take his antibiotic he kept throwing it up. I kept begging them to give him an injection of it cause he’s fine with needles the doctors response was we will try again cause another child with autism just took hers and she took it no problem!! I snapped when I walked back in the room when they were about to put restraints on him to give him his meds!! He wasn’t being violent he was throwing it up! Needless to say everyone got an earful and a letter was written to the chief of staff! Its sad that even a pediatric doctor lumps all autistic children together!!! And to restrain him please he’s the most lovable huggable kissable kid in the world! When ever I have a moment he’s right by my side giving me a hug and a kiss and telling me im his best friend! Doesn’t connect with his mama my ass!!!

  7. The first book we received on Down syndrome, and we got 4 copies from multiple sources was an absolute nightmare. The medical section alone made me cry everytime, especially since our daughter seemed to be using it as a checklist. One doctor told me that there was no excuse for a child like this to be born in this day and age, because we can detect and abort. What no expert or book could prepare us for is that 8 years later, she is reading at grade level, scoring in the average range of all incoming first graders, swimming, dancing, and just had her first piano recital. Good for you on setting the record straight. I’ve wanted to take our daughter back to that awful doctor who looked at an ultrasound and thought he could predict my daughter’s bleak future, but I know he would still believe he got it right…that we should have listened to his “disability prevention” campaign…and I’m afraid anger would get the best of me.

    • Thank you for sharing your daughter’s inspiring story.

      I can’t imagine having a child, loving a child, who so many think ought to be aborted. I fear the day that detection is available for autism in utero, and the same “disability prevention” is “offered” for autism.

      Blessings to you and your family. Enjoy!

  8. Email sent to WebMd……This is shameful that they have info. out there like this in 2012, almost 2013. As a “regular Ed” classroom teacher I can tell you that this bothered me a lot as I have taught kids who are “on the spectrum” and this definition on there is horribly inaccurate. Thanks for the opportunity to contact them and hopefully they will correct it very soon.

  9. I simply ADORE Brooke’s Backyardigan picture. She is quite the talented artist. I do agree that it is all about perception.

    Thank you as always. Blessings.

  10. that’s a nice addition, honestly, and one that was sort of itching the back of my mind because we’re still very much unaware of how Lily’s ultimate cognitive landscapes will unfold in front of us…

  11. Just to be fair, I have to say that I am getting annoyed that you are annoyed that none of these definitions fit BROOKE. They do fit some kids. I’m not talking about Web MD, whatever about that. By the language your sweet girl exhibits it is obvious that she will go far and be successful, not all of our kids have that. I feel like you are constantly talking out against part of the spectrum… not all kids do have empathy, or do not exhibit it as Brooke does. It’s really been a turn off lately and I hope you can move on.

    • michelle,

      i’m sorry that you’ve read it that way. by no means am i ‘talking out against’ anyone who is not like brooke, but i AM trying to make the point that the spectrum is incredibly varied and that as soon as we start painting our kids (and adults!) with one brush, we will automatically be wrong about some, if not many of them.

      the traditional thinking that NO one on the spectrum has empathy, or the ability to imagine or connect or that EVERYONE on the spectrum has intellectual disabilities is absurd and dangerous. not only do those definitions not include brooke; they don’t include a vast portion of people on the spectrum. i will keep your comments in mind and remain sensitive to the fact that our experience is representative of, well, our experience.

      jess

  12. You know, this one is near to my heart. I *know* my sweet boy does not have “mental retardation”. He had a viral brain injury that ended up being dx’s as “autistic regression syndrome” (yes, i now know thats not a real dx). Anywho. As a reuqirement by the state to keep him on the UNGODLY long wait list for a medicaid waiver so he could get therapy, we had to get him an IQ test by a psychologist. AFter much drama in finding one who could do an IQ test on a mostly non verbal child, we got it done and it came back at 42. The letter with it, which i’ve since buried in the filing cabinet because it traumatized me completely referenced “significant retardation”. Its only a word. They don’t get it.

  13. I remember looking over checklists & website “characteristics” and while some fit, some did not. He smiled, he laughed, he’s affectionate, he hit milestones, he did not have any regression, he looked at people when they talked. But he did not pretend play, he could read & speak but did not have conversations & his gaze was fleeting when engaged with people he didn’t know well. Couple that with pediatrician telling us he was fine, you have a recipe for disaster. It is a spectrum & none of our kids are the same. A true depiction of what Autism is on the internet is impossible and yes, dangerous. Never trust the internet, never trust a lab coat…trust your instincts!

  14. I absolutely love Brooke stories! She definitely has some special gifts going on. I also see that those of us who were not quite that lucky with the autism outcome could feel that if only we did this or that, maybe our kid would be better or more functional than they are. From the perspective of kids who have reached 24 years of age, (two, adopted, not related to each other biologically) I can say that some are definitely affected less than others. My boy is delightful (mostly) and my girl is cognitively quite impaired, and not nearly as easy to live with. They had very similar advantages growing up. The boy, tho, is not all that empathetic, where she is a bit more, All we need to remember is that autism is certainly unique in each person. Some are good with empathy, some not so much. Some are brilliant, some stay stuck at a very young level. I think it might be as dangerous to imply that all kids pos sess these desirable traits as to say they do not. We just have to do the best we can with what our kids have been given, wherever they may fall on the spectrum.. And support one another in this challenging journey. Please, please, keep inspiring us with Brooke stories. I look forward to them each day.

  15. The scariest part of this is not the parents who will read this, but anyone else who is just looking up autism, reporters, etc. who will see “unable to bond” and run with that. My sons have empathy, and are expressive, even if one is socially clueless and the other is a sensory nightmare. I’ve been following your path with Brooke and have the btdt “Uh’huhs” as I read.

    We need to remind people that this is a spectrum. Yes there are families and children who are severely impacted who do meet those characteristics, but then there are the kids who with help and support will be able to lead productive lives. We need to have a society prepared to incorporate them. If anything I think the NTs need to work on the empathy problem even more than our children do.

  16. If we believed in WebMD half as much as we believe in Congress, we are still giving them far too much credit ;0)

    Excellent post, Jess. I hope everyone tells WebMD what’s up. For real.
    ;0)
    xoxo

  17. Love this post! I too looked to WebMD when our little man came to live with us for more information about his “PDD-NOS” diagnosis… couple that with a healthy dose of PTSD and Schizophrenia we decided to leave the net behind and talk to REAL parents with REAL children with the same diagnosis as our son. We learned that while no where near typical, our son is fantastically unique. WebMD is hearing from me! I cannot believe they’re still pushing this inaccurate information in the faces of scared parents who aren’t sure where to turn!

  18. Wow. I wrote in to WedMD. AND, around a third of kids on the spectrum test with a low enough IQ to be retarded, about HALF the 75% quoted by WebMD, and this despite being tested in a medium that might be swahili to them. And of the many spectrum kids including my own, they are MORE affectionate than their NT sibs, and more into their families, perhaps because it is one place they are accepted. My kid has empathy too, though his perspective taking needs help. When he understands, he’s always trying to send all his allowance and birthday money to animals in need, hurricane victims, tsunami victims, rather than buying things for himself. In the aftermath of Sandy Hook, we need to stop these negative stereotypes of our kids – they aren’t fair nor accurate.

  19. What a few weeks this has been. Starting with Ms. Bazelon and ending (hopefully for a while) with WebMD. I don’t know about you, but I felt this morning that I’ve spent far too much time thinking about what the rest of the world thinks of, or could think of, or will think off my two sweeties, rather than just thinking about them, period.

    I’m sure this month-long DOAM thread regarding empathy-violence-cognitive abilities – bonding- and other assumptions, spurred on Michelle’s comment above “…not all kids [with autism?] do have empathy, or do not exhibit it as Brooke does. It’s really been a turn off lately…” And it can be a bit of a turn off for those of us with children who do likely have a cognitive disability, or don’t, in fact, seem to show or otherwise have empathy, or have not bonded as one might expect a child to, or don’t have strong teams surrounding their kiddos. Paper cuts versus amputees… I think you said that anology was crude. I think it might be apt.

    With 11,000 followers with Diary, there are going to be some amputees in the crowd who have a hard time hearing about the trials of the paper-cutters. That’s just the way it is. But as advocates and self-advocates, we’re all going to have to find a way for all kiddos on the spectrum, empathic or not, genius or not, creative or not, “high functioning” or not, verbal or not, to get the respect, attention, support and therapy they need.

  20. A million years ago (okay, eleven) when my daughter was first diagnosed, I went on the internet and read up on autism.

    I threw up.

    Had a nervous breakdown.

    I was convinced my daughter would be institutionalized.

    The internet can be a scary place. Thank G-d for your front porch, where we can gather and talk it out.

    I

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