APE – the Asperger Parenting Experience

The Life and Times of one Asperger Parent

A Parent’s Prejudice Against Asperger’s

Posted by Patrick on 29 October 2008

This story also appears on Trusera

“Oh, your kid only has Asperger’s; you’ve got it easy. Try dealing with my life and my kid for a day.”

Ever heard that before? I heard this from an autistic kid’s parent just this week. At first, I guess I found it hard to believe that someone would explain what I deal with daily as “easy”, even comparatively. And, though I made no formal reaction to the comment, it did make me think about how there seems to be a division of opinion towards differing functional levels in the autism spectrum.

After some thought, I realized that I’ve heard the same comment before, just presented in a slightly more elegant package. In fact, even in some LAUNCH classes I took right after the diagnosis, I noticed parents would have different levels of empathy when talking to other parents.

I don’t try to hide my son’s condition, though sometimes it doesn’t really show through and a bystander may not notice any difference from a NT kid (a common theme with Asperger’s kids). Does that make life “easier” than a parent who nurtures kids with lower-functioning autism?

If you parent a kid with (what I call “classic”) autism, have you ever thought this; or, if you parent an AS kid, has this ever happened to you?

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11 Responses to “A Parent’s Prejudice Against Asperger’s”

  1. nan said

    As a parent of a kid with AS (*and* BP… does that give us more “empathy factor” than if we had a kid with AS without a mood disorder?), I have heard this of course. It never fails to shock me that within any given group or community, there is this divisive faction thing going on, no matter how “gently” expressed or elegantly packaged (nicely put, btw! 🙂 ).

    It’s not just the autistic community. In a job environment there is always the “our department is more important than their department”; in a writing community it’s “my genre vs your genre”.

    It’s a human thing. We need to feel more important, more sympathy-worthy, more “valid”. Anything that threatens this, we react to in some way. We as a species need to work harder on that li’l human flaw! 🙂

    There’s an expression someone brought up on an email support group that I think we could all stand to remember before we make thoughtless comments such as the one you report:

    “Be kinder than necessary, for everyone you meet is fighting some kind of battle.” – Unknown

    (I think it’s a spin off of “Be kind, for everyone you meet is fighting a great battle.” attributed often to Plato and Philo of Alexandria)

  2. Joanna said

    The piece that is tricky with Asperger’s is that most people DO think that he is NT. And people think they are being nice and helpful to me when they say that–“He seems normal to me.” Which then leads them to think that he is just undisciplined, lazy, or has parents who are a little nuts. This has been difficult for me to deal with on a regular basis.

    I don’t think any diagnosis is harder or easier–just different.

    • ome said

      I so agree. I have a 9 year old boy with Aspergers and I find that it is hard when my son looks like any other NT kid but sometimes has horrible tantrums or back talks etc because then he just looks like a kid with horrible behavior. Smetimes I wonder if it would be easier if it was more obvious but most of time I just don’t give a dam. I mean really don’t we have enough to worry about. I know all of you mom’s out there with kids in the spectrum are doing a fantastic job. I know this because I love my son and I know you do to and we as mothers will forever do every single little bit of whatever it is we have to do to help our kids just fit in. So I say GOOD JOB to us all.

  3. Mark said

    Hi, just wandered by your blog for the first time today. I don’t know all that much about AS, in fact I am not even a parent yet, but I know someone who mentioned awhile back that he thought he had asperger’s, and I am somewhat curious to know more about it, and I thought perhaps I might learn something by reading about your experience.

    To start with, I am wondering, what is an “NT kid”? I caught AS and even BP in the above comment, but I was unable to guess what NT stood for.

    Thanks,

    Mark

  4. Kathleen Reeves said

    I just stumbled across this blog today. I was searching the ‘net for tips with dealing with my son’s teacher.

    I was struck with what Joanna said: “The piece that is tricky with Asperger’s is that most people DO think that he is NT. And people think they are being nice and helpful to me when they say that–”He seems normal to me.” Which then leads them to think that he is just undisciplined, lazy, or has parents who are a little nuts. This has been difficult for me to deal with on a regular basis.”

    My son’s teacher seems to have the same opinion of him. He actually is mild on the asperger’s scale so he seems “normal” to folks. He can hold eye contact and has a sense of humor but has a really difficult time in non-structured environments such as the playground, cafeteria, and the gym. For example, I got the following e-mail this morning from his teacher:

    “He took quite a detour on the way to the bus yesterday and was caught in the wrong place by another teacher! We walked to the end of the playground by the bus driveway – very out of the way from the path to the cafeteria. He told her it was because he saw something shiny. He knew it was wrong but went there anyway. He will lose some recess today because of that poor choice. He is supposed to walk with one teacher and about 50 kids to the cafeteria. He does what he wants to do, not always what is expected, but at least he wants to do mostly good things.”

    I’m not sure how to approach this line of thinking with her. I am not a bit surprised that he wandered away from the group of 50 kids to go look at something shiny. It’s not the first time he’s wandered away from a group. I see it as an aspergery thing to do. She, on the other hand, sees it as poor decision making. Am I wrong to think that there probably wasn’t much thinking on his part before we wandered toward the shiny object.

    How would you respond to her e-mail?

    • ome said

      Hello Kathleen,

      You khow sometimes when I pick my son up from school I try my best not to make eye contact. Some days I really don’t want to hear it from her. I know my son is different, I know my son makes poor choices. I live with it and he lives with it every minute of every day. I mean sometimes I wonder what the heck do some teachers want. Ok yes my son made poor choices doesn’t every kid at some point make a bad choice? I really don’t know what I would say as a response to this email. If it was my son I would email her back “oops sorry I will talk with him about it.” and then I will sit with my son at some point and discuss why that wasn’t such a good idea. I feel for you. As a mom with a 9 year old with Aspergers I know this is just one more thing that keeps you up at night. “Why did he do that?” What can I do to make sure it doesn’t happen again”? Believe me I know. But please remember to give yourself as much time to say you know what? I am proud of my child today. He made it through therapy without a tantrum or you know he actually made eye contact that time. Yes your child made a poor choice when he stepped away from the group but I am 100% sure you discussed it with him and he will be fine. Remember one day at a time and one step a time. You will do AMAZING!

  5. Patrick said

    Kathleen – if you have a medical diagnosis for your son, you would be well-served to present it to the school.

    If your son is younger than, say 2nd grade, then the teacher’s message is pretty damning, honestly. The question may be why he was allowed to wander “away from the pack” and why there isn’t an appropriate supervisory ratio for children in the school at all times. Is the teacher aware of his needs?

    While it’s hard to speak against teachers in general because of the service that they do provide, not all of them are always considerate of every child’s needs, especially if they are not aware of them or ill-equipped to deal with them. Not so surprisingly, a simple majority of teachers are not trained in managing special needs – that’s why schools are required to have a support staff.

    Most children with a full intellectual palate and some awkwardness in other areas – typical of ASD children and often found in kids with “mild” flavors of autism – can cope with a regular classroom and its paces, rigors, stresses, friends, and happy moments. What I have set up for my own son is through an IEP; he is in the classroom all day except for 3 hours a week, which he splits time between a social skills group and a pragmatic language growth session (speech-language pathology because he is bilingual and ill-diagnosed as having a speech delay, but he likes the class).

    So, my response to the teacher – and sorry it’s a roundabout discussion to get to this point – would be to take the high road and try to work out the details with the teacher. Why don’t the kids have a buddy system to get to the bus – seems like a perfectly logical solution. If you get nowhere with the teacher, I’d talk to the child find program or the principal about the details and see what can be put in place to protect your son. As a parent you are equally entitled to be in control of what happens to your son on school grounds.

  6. Pheonix said

    Hey guys. I’m an Aspie, and really proud of it, but my younger brother has some much more serious mental and behavioral issues. I know for a fact that my Asperger’s is the single most downscale thing that could have happened to me, and I’m very greatful that I can tie my shoes and read and will someday go to college. My brother never will. And really, Asperger’s isn’t so hard to deal with, at least not for me. I’m just glad someone knew what was different about me and could alleviate my fear of having what my brother does. I think any parent should feel lucky that their kid has AS, because a lot of infamous people have before, including Einstein, Tolken, Mozart, Jane Austin, Satoshi Tagiri, Woody Allen, even President Lincoln had it. So really, we should just be thankful for Asperger’s. Where would we be without it?

  7. Brenda said

    Thank you so much Pheonix. Things may have to be accomplished in a different way but it can be done. Not only that, but done in a way no one else has ever thought of! I needed that reminder. My 20 year old dropped out of college last January and we are looking for on-line courses so he can accomplish his dreams. Is there anyone out there who has any advice about higher education for kids with Aspergers?

  8. Keely said

    This is a great blog! I wish I had found this earlier in my son’s diagnosis. He is 9 years old now and some days I am just grateful to make it to bed at night. THe hard part is that my husband has no tolerance for the disrespect, violence, and tantrums. I feel like I am caught in the middle trying to defend my son and trying to make my husband understand, and it is exhausting. I am also concerned it is taking its toll on my marriage. The irony, he is exactly like his father! But trying to get my husband to see this is a whole other issue!

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