27 Responses to The Stigma.

  1. Teresa says:

    Great question! When Matthew was young few people fit into the criteria for “autism”. Many were categorized by levels of mental retardation (educable or trainable). I found the names appalling but worse, once a label was attached via the school one could not escape it. At that time autism did not have the same connotations and there was always talk about the brilliant savant (yes, they were still called idiot savants). Unfortunately, for much of the outside world any name attached to a special needs child indicates a severe cognitive problem. So, should a person who has Asperger’s or similar tell others? I don’t know. While it might be eye opening it might also subject one to unnecessary ridicule. In our case, my son’s disability becomes readily apparent when someone asks him a question. I generally do not give a label but instead, just tell them he is nonverbal. (For some reason that generally doesn’t conjure up any negatives–except in the other person who often decides to take it upon himself to try and make Matthew talk.) ::sigh::
    It’s a challenge and there are no easy answers.

    • solodialogue says:

      Teresa, thank you for sharing here. I always learn new things from your experience and you broaden my knowledge from a different viewpoint. You know this was not so long ago, relatively speaking. It shows how different labels connote meanings and that meanings change over time. I think this sentence from your comment is so true:

      “Unfortunately, for much of the outside world any name attached to a special needs child indicates a severe cognitive problem.”

      So, if we say our children are on the spectrum or have autism, does that enlighten a person who views our child into believing, “Oh autists can be functional, happy, good natured people?” Or does it change the perception of the person viewing our child from a functional, happy, good natured child to a child with a cognitive problem? Obviously, we cannot change another’s perception, so there is another factor to consider in determining whether trying to dispel the stigma by openness will work. I think it will do it with some open-minded people but how many?

      • Rachel says:

        You just never know how it’s going to pan out. You could tell a person that your wonderful, bright, loving son is autistic, and it could be the beginning of a great change in the person’s outlook. Or not.

        There is a blogger with Asperger’s who is a professor at a university in the midwest. She speaks five languages and has a degree from Yale. When she told her colleagues that she has autism, one of them actually asked, “So, does that mean you’re slow?”

        People sometimes only see the prejudices in their heads. That’s why it’s so important to dispel them with reality. 🙂

      • solodialogue says:

        Thank you, again, Rachel. I do know what you mean that it may or may not change someone else’s outlook. That professor’s colleague is an extreme example of thick-headedness. I don’t know how long it would take for that person to have the bulb go on above his/her head. And when I know there are so many thick-headed people out there, I get a bit discouraged. I understand the theory – I fear the practice…

  2. Tam says:

    Children are very observant, and they pick out differences very quickly. The likelihood is that the children your son is around on a regular basis already know that something is different about him. If any of those children become inclined to bully they will, given the opportunity, whether they know the label or not. And the same will go for any other kid with a difference, whether that be glasses or weight or a silly name or any number or things that don’t even matter.

    The parents are, perhaps, more likely to care about the label, as some have grown up with extreme prejudices about what autism is or is not, and they’re likely to be much more problematic in this equation.

    • solodialogue says:

      You are right about picking up the differences, Tam. The children, though, right now are still in preschool. They ask questions about the differences openly and ask why my son has someone attend preschool with him when they don’t. Then, even though they know my son is different, they seek him out for play. They run and jump and smile with him. They ask him for hugs when he leaves class for the day. It’s an innocent time of life. I wish it lasted forever. I know it won’t. But right now? It’s pretty nice.

  3. Wow. Great question, Karen… one that I have not even begun to consider. I’m interested to see what insights your readers will have!

  4. Rachel says:

    Great post, Karen! So much to think about. (This comment is going to be long. Hope you don’t mind.)

    The thing about your son’s diagnosis is that, given his IEPs and therapies and so on, his autism is going to be something of an open secret. People may not know about the autism specifically, but they will know that something is going on, and that he has a disability of some kind. Every disability has a stigma attached; our culture is deeply prejudiced against people who have atypical bodies and minds. Not talking about it may open up your son to gossip in a way that you can’t control. And as Tam said, the other kids will know he’s different. They might not know the name of his difference, but to kids, that really doesn’t matter. Many (most? all?) of us without diagnoses grew up bullied because we were different.

    Personally, I think it would have been better if I had known I was autistic and taught to be proud of myself *as an autistic person*. Then I would have had a name for my difference and a place from which to defend my psyche. I would have been able to take control of the conversation about myself, instead of letting other people push me into some pretty bad places. I might have been able to enlist other kids and adults to help me. Might people have bullied me, regardless? Sure, but at least I would have been coming from a position of pride, and I would have known that I was dealing with prejudice instead of feeling that something was wrong with me.

    There is a lot of vulnerability and anxiety about coming out and being out — no question — but there is even greater vulnerability about having to hide an essential part of oneself. There is always the anxiety of exposure. Plus, if your son grows up afraid to speak who he is, that fear can communicate itself to those people who are already predisposed to mess with him.

    I will readily admit that there are some days that I would like to be able to put the toothpaste back in the tube and separate the word “autistic” from myself altogether. I don’t mind being autistic. It’s difficult, but not nearly so difficult as the stigma and the ignorance that other people are carrying around about it. It’s very, very difficult to be a member of a minority group about which people say such awful, ignorant things. It can be very upsetting and burdensome. There are days I’d like to catch a break from it all, but it’s the nature of the world we live in, and hiding who I am is not going to make me feel any better. All I can do is push back against the stigma whenever I run across it.

    If you’re interested in reading one of the best books on stigma and how it works for people in any minority group outside the society’s definition of “normal” (which is, actually, a hell of a lot of people when you consider people of different races, religions, sexual orientations, ethnicities, social classes, disabilities, etc.), see “Stigma: Notes on the Management of Spoiled Identity” by Erving Goffman. The book is pretty academic (Goffman was a sociologist), but fascinating and brilliant. It really helped my thinking about how to separate myself from the stigma regarding autism without ending up divided against myself.

    There’s also a great article by Caitlin Wray, the mom of a “high-functioning” autistic child, about how she handles the whole “coming out” question for her son. It’s called “Do Ask, Do Tell: How to Shift Autism into the Mainstream”:

    http://www.welcome-to-normal.com/2010/06/do-ask-do-tell-how-to-shift-autism-into.html

    You might draw a lot of strength from that post. And her blog, “Welcome to Normal: Population 0” is fantastic.

    • solodialogue says:

      I so wanted to reply to you, yesterday, Rachel! But life intervened. First of all, thank you. Thank you for your insights and your long comment and for giving me the gift of knowledge and experience. I understand how confusing it must have been to grow up without the label to explain the differences and how that could have been a grounding point for you. I understand a lot of it because I was the odd kid in school myself, the one who studied and did not understand social intricacies and was bullied based on my race (half-Korean – everyone just made us “Japs” back then and I was chased home on more than one occasions being hurled epithets on my way). I think my own experience with bullies makes me especially understand from where you speak.

      I do know that bullying can and will happen as my son gets older. Right now, as I said to Tam, he is still in preschool, where the kids, while curious are much more accepting and innocent so that I’m not faced with all the ugly but I can see it coming. I see it as the mom when the word autism is spoken.

      I do not hide the autism from my son, even at his age. We’ve had a couple conversations about it already (well, that’s not true – I’ve had conversations with him where he sits there and looks at me). I have always openly said the word autism in front of him and to him and make no effort to hide it from him. I know moms who do hide it and wonder how to go about telling their children. I’m not that way. So, at least, my son will always understand that piece about himself.

      I do completely understand how taking this stance could open the eyes of those who have one perception and could benefit from it. On the other hand, my son is still living in his Renaissance so to speak and to openly declare his disability to all at this tender age is just not something I am willing to do right now. It’s the protection issue. Right now, that makes sense to me because of how preschool is – innocent, curious and loving. As he grows, that will change.

      It strikes me how much “coming out” is akin to doing the same with so many other minorities that are “invisible and ostracized”. I know that the gay community has made significant progress in acceptance by doing so but not without paying their price. For me, I’m standing in the archway to the closet with the door open part way. Someday, I will step out but I would really like that to be something my son has a say in. It’s too soon for me.

      I read the post by Caitlin. Amazing!! She is there and so were many of the commenters on her blog. I’m pretty sure my son is younger than the others. I will pick up the book on stigma. Thank you so much for the suggestion. And a world of xoxo for always giving me perspective and things to think about on my journey. You have an indelible impression on my moral compass. Forever. ❤

      • Rachel says:

        Thank you so much for your kind words, Karen.

        You are doing such a great job on this journey. Your little guy is still so young, and I understand wanting to stay in Eden for as long as possible. That’s natural for any parent. Someday, that will end (as it does for all children), and you’ll be equipped for it because you’re thinking about all these things now.

        There is a very high price to pay for being different in this culture — no question. Unfortunately, that’s how our society is set up. But his difference will be there for your son, always, no matter how well he may blend in with his peers. There is always that invisible line, that thin membrane, that reminds us that we see the world differently. It’s not about the autism specifically, although people try to make it that way. It’s about difference, pure and simple, and it’s true for people with any kind of non-normative identity. Being biracial, you’ve probably experienced that yourself and, having experienced it, you want to protect your child’s sense of oneness with other people as long as you can. You’re totally right to do that. You’re building a very solid basis on which your child will feel his basic humanity, unencumbered by other people’s prejudices.

        I know a woman in town who has the amazing job title of “Advocate for Social Justice.” She advocates on behalf of people with disabilities. She told me once that, up until kindergarten, she was just “Shela” — just herself. Then, on the first day of kindergarten, some of the other children started throwing racial slurs at her, and she became known (to herself and others) as “Shela, the black kid,” with all the pride and all the pain of that.

        Her family shielded her for as long as they could. And when they couldn’t any longer, they went into battle on her behalf, bringing suit against the school district and ultimately forcing the district — and the state — to deal with racism in the schools in ways that have helped countless other kids.

        So, when the times comes, you’ll know to change course, and how to move through it. And I’m always here for support, as are many other autistic people who have been through this, and continue to go through it, every day.

      • solodialogue says:

        Rachel, sometimes I feel like people bestow gifts of words upon me. Yours are such words. I hope I will know when that time comes before it is too late. I’m so grateful to know you. It is a great honor that you comment here and I appreciate your support.

  5. Flannery says:

    This is a good topic. To the general public, I don’t announce that my child is on the spectrum. Not out of embarrassment, but out of respect. I want him to be accepted and judged as an individual, not as someone with special needs (he is high functioning). As people get to know him, then I may mention it, but it will usually become obvious. Friends and family all know, and I have even had some “friends” say out loud that “they can’t imagine what they would do if their child had autism.” So much ignorance out there, still.

    I suppose as he gets older, I will have to let him decide for himself. We definitely don’t hide from it, we just try not to make that the introduction.

    • solodialogue says:

      I understand every word you say. I don’t think my son is as high-functioning as yours and so I can see the probability of bullying, teasing, and whispers in the future. I do mention it as well openly, not just when it becomes obvious (I’m guessing you mean behavior-wise) but simply to explain why he’s walking the mall with three therapists and me in tow… to explain the situation that way. There is so much ignorance – how do we combat it? By coming out and showing that autism takes all forms? Eventually for me – just not yet.

      And I too, want to let my son decide but his behavior may make that decision for him…

  6. Jack says:

    Its a question I’ve been battling myself. When, who and what to say, and how to deal with peoples assumptions that can come with the label.

    From what I’ve found so far, there is no perfect answer.

    What Rachel says, I wish had happened myself. Growing up without knowing why I was different and what made me different was hard. (I knew I was different, but only got the diagnoses just over a year ago now) I don’t know if it would of been difference had I known I had Aspergers while in school, but I would like to think I would of been able to get the help with learning that I needed instead of having teachers say oh we won’t spoon feed you. Or you can cope with that classroom where students are talking when the teacher is. (I failed that class, couldn’t make out what was being said)

    At the end of the day, Its hard to decide who to tell and when. So far, for myself I’ve told some of my closest friends, one or two workmates, and my direct manager only because I was having problems hearing people in a busy environment. Solved that problem only in part.

    I would tell teachers, only because I have a particular way of learning. Repatition. Which doens’t always go down so well at a University level, where in part your ment to self teach. But I’ve found a way around that.

    Sorry, not sure if I’ve managed to say what I was wanting to say, or if I’ve even stayed on track. I hope it helps a little.

    I know what Rachel’s saying though, and agree with her.

    • Jack says:

      At the end of the day, I am pretty open about it. But I also exercise some caution. Certain body language if I see them will leave me not telling someone. Sometimes its because I do know a person relevantly well I won’t tell them, due to a lack of trust or other reason. I rely on my gut feelings of people to decide what I say or don’t say. Its what I’ve got, and its proven mostly reliable.

    • solodialogue says:

      Hi Jack. I’m so glad you are back commenting and sharing more about yourself!

      It sounds like school was a difficult puzzle not knowing your diagnosis and making your way through it all. That “spoon feed” comment is simply uncalled for.

      It is a difficult question. It is interesting to see your perspective since you also have the diagnosis and have to make the decision of whom to tell at the personal level that Rachel has done. I know that each person on the spectrum is different, with different experiences and backgrounds and supports. I think, at least in my mind it goes like this:
      With the diagnosis comes learning;
      With learning comes understanding;
      With understanding comes acceptance;
      With acceptance comes comfort; and
      With comfort comes the openness of sharing.

      I’m still at level 2- understanding and acceptance. I’ll make way through the rest as time goes on. How about you?

      • Jack says:

        I think I’ll always be learning. Knowing what/why I am different has simply raised more questions then answers, not that I am complaining. I like learning, its fun.
        Accepting, it started as a bit of a shock, but I honestly think I am a better person for knowing what I do about myself.

        I do have an online diary somewhere.. I’m just not sure about sharing it yet, a lot of things could be taken out of context and I sometimes (Often?) Don’t always provide full context to situations.

        I can’t help but wonder, what would of happened had people had known. I think one teacher in late primary school suspected something, but from what I can tell, it was before awareness of the symptoms was well known.. that and I’m a female, which from my understanding means I present somewhat differently.

  7. Tootleslady says:

    Where in the EFF is my school picture of Tootles!! I already bought his frame!!! (that picture makes me so proud I can’t stop smiling!!! THATS MY TOOTLES!!!

    • solodialogue says:

      Bahaha! I was wondering if anyone would see the pride of the mommy in sneaking that photo in!! You truly are the “other mommy” aren’t you? You’ll get it! 🙂

  8. Jen says:

    I tend to not tell people about Katie’s dx b/c she is HF, and I feel like they will look at me like I have 3 heads, with images of those who are severely affected swirling in their heads. The other day we were at the McD’s play area and there was a little boy there who was probably around K’s age, totally non-verbal, very unsettled and stimy.It amazes ME sometimes how broad the spectrum is, and I almost feel guilty K has come so far. Of course we definitely have huge challenges, but K can look just like a “bad” kid and people wouldn’t automatically think Autism. Plus, people are so judgey these days, thinking parents make stuff up about their kids and are just bad parents. Of course, educating people would help, but I think it’s hard to get people to really see how broad a spectrum it is.

    As far as the stigma goes…I am not afraid of that at all. Heck, I would rather that than them thinking I am a bad mom with a bad kid. The word stigma is funny to me b/c the school told us we didn’t want K on the sped van b/c of the “stigma” attached. Seriously, what hope is there for the general public when even the school thinks like that?

    • solodialogue says:

      It is hard to see how broad the spectrum is. But with your blog you are doing just that, Jen. Your post about this very incident is opening eyes and making people think and each little piece helps so that someday we won’t have to think about people judging whether we are being honest in revealing that our HF kids have the disability the same as those on the other end of the spectrum.

      It is a shame that the school decided to give this impression to you. If it happens again, I hope that you will confront them with the very words you use here. Because I, for one, would certainly like to know how on Earth they could justify a response.

  9. eof737 says:

    I don’t know why there should be a stigma attached to a condition that is medically defined but I understand that many in our society have unrealistic expectations of themselves and others. The posts have been highly informative and your dedication is stellar. I have nothing but praise for you and other moms with autistic children.
    Keep the faith. 🙂

    • solodialogue says:

      Thank you Elizabeth. It is a shame that stigma exists in so many forms in society. If only there was some simple solution. I think it always goes back to educating. Some people cannot be taught tolerance and understanding and that’s both sad and frustrating from my perspective.

      Thank you for your kind words. 🙂

  10. Sue says:

    I don’t think there is an easy answer. We always shared our daughter’s diagnosis with her and with our close friends and family, but not all of them stuck by us or by her. She was diagnosed at age ten and then she was severely bullied a year later. We already knew some of the children at her school picked on children who were different so we chose to keep the diagnosis quiet at her school only sharing it with her teachers and school staff on a need to know basis. The reality is I do not think this helped her in the long run and she did eventually tell her friends herself.

    You have to make the best decision you can based on the best information you have at the time and try not to beat yourself up about it later. I do think Rachel has a valid point about removing the stigma and I hope it will be removed one day. We are now working to do this as I know others are too. I also think it is important to empower our children as they grow up to stand up for themselves and I wonder how we do this if we hide the diagnosis. The main thing is to include your child in the decision as they get older and make sure they know you are proud of them for who they are.

    • solodialogue says:

      Thank you Sue for commenting. I am honored that you stopped in! I agree that there is no easy answer. It’s very interesting to me that you too always shared the diagnosis with your daughter. I too have had the abandonment of friendships because of the disability.

      I’m so sorry that your daughter was severely bullied. I am glad that she always knew her diagnosis so that she could know the reason for the attacks even if others did not understand. That she shared the diagnosis among her friends on her own makes me wonder what the motivation was that got her to the point where she made that decision.

      I too hope for the removal of the stigma – but I also have little faith in human nature. Timing, for the decision to openly provide information concerning the diagnosis, is everything. I hope I recognize when it will be appropriate to do so. Letting my son know I’m proud of him will never be a problem! He gets that reinforcement every day. 🙂

  11. Lynn says:

    Just picking up on Rachel’s point about minorities…it just really struck me for the first time this week that Audrey’s autism makes her a minority (another awful word?). I’m still debating amongst various schools/classrooms placements for the fall, and one of my neighbors was extolling our “home” school by telegraphing all of these code phrases like how we don’t have a transient population and how stable the community is and how there are no apartment buildings in our boundaries. I was dumbstruck. She was clearly making veiled racial statements, and I thought to myself if you don’t like racial minorities, how are you going to treat my kid at that school?

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