"My Son Has the Kind of Autism No One Talks About"

Post Reply New Topic

http://www.huffingtonpost.com/bonnie-za ... 91918.html

I will admit, this is a huge internal struggle for me. Both of my kids are "success stories" in the world of autism. The kind that newspapers write stories about. I have always felt the need to push people to understand. I want people to know that they are just as "normal" as any other kid, only different. I want people to understand that autism doesn't always mean a kid is detached, headbanging, or violent. Because for my kids, those things are not true. And I don't want them to lose opportunities because people have misconceptions and judge them according to things that do not apply to them.

Here's the struggle: Sometimes I fear that my kids--especially my daughter--might actually cause people to have misconceptions about autism. Misconceptions in the opposite way... that ALL kids with autism are able to learn to compensate to the degree she has. Sometimes I struggle because I think that others will think that because she did it, all kids with autism have the capacity to do it. And I think the truth is that all kids with autism do not have the capacity to function the way she does. I don't mean that in a mean way. I am not saying she is better and other kids are worse. I am saying that for whatever reason, her "upper limit of possible functioning" is higher than many other kids on the spectrum. Not because I did something special or because she tried harder, but because that is just the way it is. There are undoubtedly kids on the spectrum out there who have parents who have worked just as hard as I have, and who, themselves, have worked just as hard as my daughter has. That doesn't mean they will be as... well... fortunate as she is. For whatever reason, she was blessed with wiring that allowed her to develop in this manner. I do believe that without the support and interventions she received, she would not be as well-compensated as she is now. But I do think that she was born with a capacity for that support and those interventions to have a greater impact.

I think it is a dichotomy within the community that is difficult to rectify, and it is one of the reasons I have difficulty with the "one name" idea. People use labels as heuristic shortcuts. It's a useful phenomenon in many instances. When you have this little boy described with the same label as my daughter, there are bound to be misunderstandings. I don't want to derail this conversation into a debate about labeling. I think that is pretty worn out and tired. But there is a valid "problem" related to the "ends" of the spectrum when it comes to making the lay person understand.

I do think that the writer's closing is unrealistic, however. She said earlier that she cringed as her child ran toward her because she could never tell if her son was going to hug her or hit her. Then she expects that neighborhood kids will be able to figure out what will set him off and what won't, so they will be able to play together safely. Unrealistic. If she can't tell if her kid is going to hug or hit, how can she possibly expect a kid to? And how can she expect a parent to allow their kid to be put in that position? I think all parents are driven by a need to keep their kids safe first and foremost. I know if I had the choice between doing the philosophically "right" thing and keeping my kid from harm, I am going to keep my kid from harm every time. And I happen to be fairly rigid about "doing what's right." I mean, I really feel for this mother. It is heartbreaking. But if her son is prone to violence, my daughter would not be playing with him, no matter how much her situation broke my heart. My allegiance is to my kid. But then there is the problem for me that the "lay person" may hear my daughter is autistic and assume she is violent, when she isn't. They may protectively kept their kids away from her and she may not have friends based on someone's misunderstanding of what autism might be, and what it isn't always. Luckily for my daughter, I am not aware this has ever happened. But I do think that is partially due to her appearance. She is smaller than most kids in her grade and she has a striking appearance. By striking, I mean she is attractive in an atypical way that makes her stand out in a positive way. She is about as "cute" as a kid can be. It causes people to give her certain "passes" for all sorts of things. I think if she was larger than other kids and not so visually appealing, perhaps she would have been judged differently. But now I am getting away from the point.

If things were simple, things would be... well... much simpler.

My heart breaks for the writer and what she is going through. That doesn't make what she is writing more or less valid. I'm not sure where she got her statistics but I've never seen those numbers and don't trust them. Also it is false to say the media only writes about the highest functioning people with ASD. There's been more emphasis on that in recent years I think partly in response to activism (and IMO this is a good thing) and partly because it is used, effectively, as a way to create more motivation for donations to autism organizations.

So I started to tear up for her but she is writing out how she feels. One should also imagine how high functioning people feel held back by prejudice. Neither is good, both are concerns, and if we compete for which is a greater concern we WILL all lose.

I think what she wrote is heartfelt, it is a good point, and it is divisive, and unnecessarily so IMO. I do not agree with her at all in what she writes.

There is no internal struggle for me, because it is complicated, like life.

I think the answers are relatively simple and widely known: follow the golden rule. Don't be quick to judge. Don't judge without knowledge.

I do not have much respect for those who want to oversimplify in ways that harm others.

I disliked the article and found it hard to sympathize with Bonnie Zampino because of her unbelievable statistics and deceptive rhetorical devices.

Unbelievable:
"for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. "
" for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed."
"for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people."
These numbers do not seem to be based in any actual data, but are instead a rhetorical device. They present a false dichotomy and an oversimplifying distortion about ability. Maybe the kid who goes to the prom also self-harms. Why can't this be as true for the autistic kids as it is for the NT kids?

The same kind of oversimplification appears in the set up for those bogus statistics;

Light it up blue is an Autism Speaks campaign, directly associated with well publicized efforts to demonize all autistic people, portray autism as the worst kind of tragedy that can afflict a family and expressing sympathy with parents who murder their autistic children.

It silly to speak of "the media" as if the multi-channel sources of public information were some kind of monolithic block, but it's easy to find plenty of publicity in many media channels for the view that autism is nothing but feces smearing, violence and calamity.

Zampino claims that there is insufficient awareness of very low functioning autism, which is probably true, but sets up a false conflict between awareness of high functioning autism and awareness of low functioning autism as if the first kind of awareness was responsible for the lack of understanding of the second. The problem here is suggesting that awareness is a zero sum game. It's almost too silly to be worth refuting.

Her primary goal seems to be to silence stories about high functioning autistics, as if that would somehow improve the lot of low functioning autistics or those who care for them.

The irrationality only gets worse when she proposes solutions at the end of the article, about how we can become "really aware::


This is the bogus zero sum game thinking: the way to make it better is to privilege the negative view. Beyond that, there is no concrete suggestion, just a vague utopian vision that seems mostly in tune with the awareness/acceptance messages she seems to find so troubling:


How will not having stories about successes by HFA people accomplish this? Aren't people free to get to know their neighbors now? Is there anything about promoting an image of autism as a feces-smearing, self-harming, mindless violence machine that will somehow help people to get to know their neighbors???


Spiffy, but what does this vision have to do with silencing efforts to raise awareness that there are also autistic people who are not violent feces-smearers? How does focus on the difficulties of some or the tragic lives of their parents help ???

The story is somewhat organized around the lawsuit in California. It sounds like the parents in that situation could have done much better by their son and neighbors, and their neighbors could have handled their situation more skillfully -- but this piece does nothing meaningful to address that situation or others like it, but rather seems to take the publicity around that lawsuit as an opportunity to engage in more hostility to awareness of potential successes in the lives of high functioning people.

I don't think that's a commendable response.

Funny, I just saw this article and basically had the same reaction Adamantium describes. I also think that there are PLENTY of people talking about that kind of autism - it's the drum Autism Speaks keeps banging, and the one all the geneticists looking for a eugenics-style "cure" talk about.

I don't know: I think the problem is that we like to look at autism as either/or. No person with autism is "magical" on either the demon or angel side of that assumption ...but every one is a human being that deserves our collective support and respect.

I used to have the same reaction to my son when he ran to me, but he's the kind she alleges we "talk about." We lucked out on the feces-smearing, but I know plenty of folks who had that whose kids are fine (God bless her, Temple Grandin apparently has to hear her mother tell that story every time they go on tour - she is a bastion of self-control. If MY mother stood up regularly in front of crowds and whined about my less-appropriate childhood behaviors, I would start throwing things. Seriously.) Frankly, plenty of NT kids go through a feces-smearing stage, we just don't pathologize it when they do.

Conversely, we as a society are totally ignoring the adults on the spectrum who need support in daily living. Making the disabled seem like raving, violent, filthy people - even if they do have those issues - does not help them in any way. So, yes, this article made me mad.

Plus, I looked up the California lawsuit she mentioned - I am guessing that's the post that recently got locked, and I'm glad we pushed back, because that whole situation sounds AWFUL. Those people should be ashamed.

I don't deny there are autistic people out there who do smear feces, hurt other people, hurt themselves, etc. It's just a hard truth that lot of autistic people don't like to hear about someone with it doing it.

Good for the mom for keeping her son away from people because he was aggressive but what aggravated me was when she seemed to defend the boy's parents being sued. Hello he was aggressive and other kids didn't feel safe to play outside. How is this acceptable? No one should get a free pass.

But lot of people with ASDs always seem to forget it is spectrum. There are high ends and low ends. Not all autistic people do these things. But of course if you mention anything negative about autism such as aggression or feces smearing, you are seen as feeling negative about autism when you are just seeing it the way it is for some people with it. The truth can be uncomfortable and lot of us want to sugarcoat it and shut these parents up and judge them. But I think lot of us do this because we want people to see autism in a positive light and not want a cure for it and not have people fear us and make assumptions thinking we are going to attack someone or think we don't understand anything or think we act like wild animals. What we should be doing instead if trying to make people understand this is a spectrum, not all of us are that way. I am sure parents of these autistic kids would love to have us as their kids.

Teaching kids about how not to get hit sounds a lot like victim blaming but I guess it's no different than teaching a woman how to keep safe and not get raped or teaching people how not to be a victim of theft like I won't let my son bring my 3DS to school because I am worried a kid will take it. You will never know what three and four year olds are capable of. Another kid can take it and hide it and put it in his backpack and say he doesn't know where it is. Unfortunately it's the way life is. We all have to avoid being victims of assault so I guess it's no different than trying to avoid it from an autistic child.

But hey if you are on a playground and another kid is being aggressive and the parents seem to not be doing anything about it and even if they are and the kid keeps at it but they refuse to leave, then you take your kids and leave and come back another time.

My son also did feces smearing but my brothers and I didn't so my mom thought it was some mental issue when a kid does it but I found out this was actually normal. I wonder what is the difference between an autistic child doing it and a toddler, did Temple do it past the normal age or did she do it too often more than a normal child? My son stopped when he was about three but he didn't do it on a daily basis.

Boo! Long post lost in cyber-space!

It started by saying thank you to Adamantium and Momsparky. Your arguments make sense.

Then I talked about how the reality is, we live in a sound-byte society where critical thinking appears to be at an all-time low. I think this is what "pits" parents of kids on the opposite end of the spectrum against each other. Because for much of the "general public" whatever they heard first, or whatever moved them the most, becomes the "truth." Media attention to violence perpetrated by autistics will lead to "snap" judgments that are unfair to my kids. Media attention to the "feel-good" autism stories will lead to snap judgments that are unfair to her kid. I don't blame her for trying to rise up, and I don't blame her for using rhetoric. That's what works these days as far as "communicating" your point is concerned. I don't think she is feeling motivated to help me or my kids, or to draw attention to the plight that we face because of people's lack of understanding about what my kids are capable of. I think she feels motivated to help herself and her son and to draw attention to their plight, which is very different from the "feel-good" stories that are often featured.

That's not exactly what I said, but it is as close to it as I can recall and type quickly!

This is the kind of autism that autism speaks is constantly talking about, so I don't think there is a problem in awareness of this kind.
I think it is good to talk about autistic kids learning and being capable.

Exactly!

And the article made me angry for trying to shut down anyone who is able to learn, that isn't an answer to her unhappiness. And yes, autism is isolating. I think a lot of us know that.

@League Girl - you are absolutely right, and while this accusation gets tossed at Temple Grandin regularly (and she herself talks about it) there is no indication of whether or not she engaged in this behavior at an inappropriate age. I can't imagine what it must be like having people talk about that in front of you when you are a fully functional adult. Kids (and adults) pick their noses, too, but we don't bring that up when they are adults.

As for the California case, take a look here: sound familiar?

http://www.mercurynews.com/health/ci_28 ... vior-heads

Also, note in this next article the behaviors the families are alleging are "attacks" http://www.ageofautism.com/2015/09/dark ... ance-.html "Stealing a banana?" Really?

In particular, the complaints about the "chilling effect on property values" sounds just like that person who started the thread about their neighbor's kid.

I hope they are reading this: I'm glad the judge threw their case out of court; these families should be ashamed: suing a family that moved away due to your complaining because they might move back?

I thought the judge sided with the neighbors and ordered the parents to get help or something. I don't remember exactly what he got for the parents but the kid clearly needs support and the parents too. I heard two different stories about this so I don't know which one to believe. As for the comments I read in the link the OP put, people would love to believe the kid is a victim and that he is bullied so he acted violent just because of anecdotes or pretend the neighbors are lying and exaggerating or they just don't want to believe a kid can really be that violent, especially if one has autism and I saw one commenter being called a liar for her anecdote story and it's amazing how people don't even know what the word ignorant really is.

But I don't really understand the fuss and why people are taking offense if their autistic child isn't violent. It's very clear people are only talking about aggressive kids and aggressive autistic kids.

People are taking offense because of the seeming linking of autism and violence by the media for instance when the only connection is that some people with autism are violent.

Being a victim is more likely, though.

Yes there are autistic people who are violent. Autistic does not equal violent.

Unfortunately, I think it is easy for the autistic community to turn on itself because there is a perception that there can be only one face of autism, and that one type of autism will be where the bulk of the support goes.

The fact is that it is a spectrum, and if people could stop being so divisive and actually work together --- that should be where the awareness should be focused: The fact that it is a spectrum. If there was truly a unifying voice, you'd have awareness campaigns focused on the faces (plural) of autism showing, different examples of functionality and different needs.

As to the rest of it, I agree with Adamantium about the Autism $peaks vibe, (even without the blue light reference) As parents, I think most of us have had issues of varying types, things that break our hearts, things we have to do that we wish we didn't have to. Things other people can do that we cannot for a myriad of reasons.

I don't want to diminish other people's issues and I would rather not get into what I think of their tone b/c I walk my own walk, not theirs. My son is, I guess, medium-functioning. I don't even know where we fit in this paradigm. He need tons of scaffolding, is homeschooling and when we venture out most of the time, he can kind of pass for mildly autistic, whatever that means, if we are careful. I don't even know, anymore. I don't want to have to fight with people on either of the other extremes for authenticity points. It is stupid and unnecessary. This type of blog entry is not what I seek out. It is divisive.

Edited for literacy.

I just wanted to take a minute to share with you about the blog that I wrote. First, I am NOT a fan of Autism Speaks and the reference I made to "light it up blue" was to show that most NT's do it to feel good about themselves but honestly have NO understanding of autism at all...but they sure like to say how "aware" they are. It makes me mad!

Secondly, the whole point of my post was to point out that parents need to be more involved with their children as they are growing up to help them learn how to interact with other people. When someone like my son is in the neighborhood, parents need to be very closely involved in helping their young children learn how to play together.

Thirdly, there are many many other things that can be done but a HuffPost blog has to be between 800 and 1000 words...so it's impossible to include everything you want to say.

Also, I believe that there are many, many faces of autism. It's just that those parents I'm around don't seem to be aware of those who are on the more severe end of the spectrum. They act all proud of themselves for accepting someone more high functioning but if they saw the other end they would (and do) run the other way. They aren't aware of autism in its entirety and that's the point I was trying to make. Maybe I'm missing something but I never see people being aware of those with severe needs. And if you read the comments on the HuffPost, people don't want to be. It makes me really sad.

Lastly, my son has High Functioning Autism and HuffPost changed the title when they published it, making it essentially untrue. My son no longer acts aggressively. He has friends. He goes to school. He goes to birthday parties and has friends over almost every weekend. He's wicked smart and loves to game and is super happy and I would never try to "cure" him because he is absolutely amazing just the way he is.

I have great respect for this forum and those who share on it. So I wanted to thank you for your views on my article and wanted you to know that it really was directed at parents and my hope that they will help their children learn how to accept each other.

Thanks

Bonnie Zampino

I think you are saying it was intended to be thought provoking to people with no awareness about autism, rather than high functioning adults or parents of high functioning kids on the spectrum?

That makes more sense, it read like high functioning adults and kids don't know being on the spectrum is isolating and that was the aspect that bothered me most.

I am glad you responded to this thread, but also curious, what made you look here?