From the Rooftop: Autism Disclosure

Last year, when I made the realization that my then-20 month old son was showing clear signs of being on the autism spectrum, I shared my concerns with a few people.  Those people had one of only two reactions.  The first was denial.  I was told that my son was too young, too cute, too social, and the oft-repeated “But he’s a boy.  They develop later than girls.”   I understand this reaction.  Parents often worry for nothing — especially about early development.  Boys are different from girls in their development.  And, yes, my son’s spectrum behaviors are somewhat atypical.  (As for being too cute?  Well, I don’t deny for a moment that he is The Cutest Little Boy in the World, so there is that.)

It was the other reaction that left me somewhat disconcerted and admittedly…torn.  I was immediately told by several people to keep quiet about it.  I’m not suggesting that they didn’t want us to seek help for him.  They did.  But they also insisted that we should protect him from any stigmatization by keeping it a secret.  Not wanting to make any irreversible mistakes, initially we followed that advice.  Only close friends and family were told, along with my administrators, who would inevitably notice all of the days I had to be out for assessments, appointments, hearing tests, etc.

But as the months passed, I found this advice difficult to follow.  We live in a small city.  One tends to bump into acquaintances in one of only two therapy centers in the county.  Family friends know that ASD in the family.  Inevitably, one member of the family is incapable of keeping a shut mouth.  To state the obvious, it gets out.  In our case, because Callum has some indicators that he may one day be high-functioning, I found myself wanting to clarify his situation as being hopeful rather than bleak.  So, while I initially intended to protect his privacy, life happened, and now folks know.

Yet it wasn’t mere inevitability that decided the secrecy issue for me.  What decided it were my experiences as a teacher.  After years of working with ASD kids in middle school – in a range of severity and ability – I have reached the conclusion that not only should ASD not be shrouded in secrecy , it should be shouted from the proverbial rooftop.

In my sixteen years working and teaching in multiple schools across the school system, I have met a lot of ASD kids.  While they have all been verbal (nonverbal spectrum kids in this county usually attend a special-needs school), their functioning has varied from non-reader to academically gifted and from requiring a full-time aide to being completely self-sufficient.  I have also worked with kids who were clearly – to persons with any sort of knowledge of autism spectrum disorders – clearly autistic/Asperger’s, but were never diagnosed due to their families’ desire for secrecy and a refusal to have them evaluated for needed services that might “put a label” on them.

In addition to ranging in severity, function, and awareness of their condition, they have also varied in the positivity of their middle school years.  In my experience, the ASD kids on the more severe end of the spectrum fare a little better in terms of teasing and bullying.  Their behaviors are so obvious that the typical kids seem to “sense” their differentness.  The bullies among them don’t bother as much to target those kids as they don’t give as satisfactory of a response to teasing.  This is not to imply that severe ASD kids don’t suffer from bullying.  They do.  But most middle-school bullies prefer a victim who will provide a little more “entertainment” and interaction.

The ASD kids on the higher-functioning end of the spectrum, in my opinion, don’t fare as well.  Their differences and needs are perceived as weird or deliberate, and they suffer all the negative attention that follows.  Because their diagnosis is known, however, school staff try to be on the lookout for such things and often make accommodations to help them navigate around the bullies.  We try to pair them up with more sensitive students and have plans for them on special events days.

But the ASD kids who are never diagnosed or whose condition is not revealed?  They have it worst of all.  These kids, whose families- and sometimes even doctors and teachers- want them to be viewed as “normal”, have received little to no help whatsoever.  They have endured years of criticism about their poor handwriting, clumsiness, social awkwardness, etc.  They have been left alone in the world, trying to navigate a mine-field of subtle human behavior, facial expressions, and unwritten rules of social norms.  These kids could have received speech, occupational, physical, and cognitive therapy.  They could have been taught how to interpret otherwise inexplicable-to-them behaviors of the world around them.  But they get nothing.  Their middle school years are pure hell.  They don’t even know themselves why they are different.  Imagine being that intelligent and not knowing why your life is so hard.

A desire for secrecy – as well as the well-intentioned desire to “not stigmatize” them – denies these kids years of help and the understanding of others.  To me, that’s unforgivable.  Because in the ASD world, that level of high-functioning is a gift horse you just don’t look in the mouth.  

Just imagine how years of speech, occupational, and cognitive therapy could have benefitted them.  Would they still be autistic?  Of course!  But they could have been autistic with friendships and accomplishments and far fewer memories of bullying and humiliation.  I pray each day that my son learns to speak in sentences and that his joint attention improves to the point of being able to learn academically.  I pray each day for him to have the opportunities the high-functioning kids have.  I also pray that, no matter what his level of functioning, that I will find the right words and actions to help him fit into his world.

Yet all I have seen with regard to autism disclosure is…nothing.  Either the autistic child’s functioning is so low that the other kids just sort of naturally leave them alone or their functioning is so high – but so unusual as to be weird – that the other kids tease and bully them.  I have yet to see a moderate to high-functioning child who understands his own condition enough to help others understand or a parent or counselor (with parental permission, of course) come into the classroom and visit with the other students to explain it for him.

The thing is, I really do believe that could make a difference.  It is amazing how typical kids can and do often rise to the occasion when something is explained well to them.  Will bullying still exist?  Of course.  You can’t be different and not experience it at all.  But when you point out the obvious, you, to some degree, disarm those who would have done it for you.  You educate others and prepare an easier path for yourself.  At the very least, you put the world on notice of how you expect to be fairly treated and can then reasonably expect to hold them accountable.  Until then, you can’t say they really know better.

I am certain that there are those and will be those who believe that I should keep Callum’s challenges quiet.  And I know they mean well.  But I’m coming at this with the hope that his abilities will be such that he will need me to help clear that path for him in the regular classroom.  I’m hoping his functioning will be at such a high level that he will seem merely odd, rather than incapable, and need the understanding of his condition by those who might not otherwise have perceived it.

I might not get what I want.  He might never progress beyond a few words and gestural communication.  If that’s the case, we will love him and help him to be the best and happiest Callum he can be.  If that’s the case, then our revelation of his ASD status will be moot.  Everyone will know anyway.

But if it isn’t the case, then I’ll still be the eye in the sky reporter, watching for trouble, pointing out roadblocks, and suggesting other routes.  I will visit his class and help his classmates to understand.  I will insist that not only his teachers be present for initial parent conferences but also any para-professionals, administrators, office personnel, or cafeteria managers who might need to know who he is and why he does what he does.  I will continue to do those things until he can do them for himself –so that I will never see the look of grief in his eyes that I have seen in so many ASD kids’ eyes.  I might not be able to change the world.  But, by avoiding secrecy and ignorance, I can help to improve his.

And at the very least?  I intend to put them on notice.

27 thoughts on “From the Rooftop: Autism Disclosure

  1. ylewis

    Amen! I’ll never understand the “I don’t want to label him” argument. If your child has even the mildest special needs, he or she WILL be labeled by others, probably wrongly. Rather than have my child labeled “weird” or “stupid” or “defiant” or “lazy”, I want my child’s needs clearly spelled out and the reasons for his differences to be well understood. I feel the well-meaning people who think it may be best to keep invisible disorders secret are simply ignorant to both the difficulties our children face if we don’t give them the tools to learn and develop to their potential AND the pervasiveness of special needs in our schools and communities.
    There are very few truly “typical” children in our classrooms these days, if one takes into account learning disabilities like dyslexia, speech disorders, attention disorders like ADHD, Sensory Processing Disorder (which affects 1 in 20 kids), ASD (1 in about 90 kids) and even food allergies (which set our children apart as well). Every teacher is now a special education teacher, and as you so eloquently said, we are setting our children up for failure, grief, greater isolation, and self-hatred if we do not empower them with the self-knowledge of their gifts AND their challenges and make sure everyone who teaches or takes care of them is equipped to meet their needs as well. This needs to be shouted from the rooftops!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      That’s the future that I want for him — to be able to both know and like himself. There are so many people with autism on the internet now who do a great job of sharing their experiences. I think sometimes that by going ahead and drawing attention to how you are different, you can get on with the business of pointing out how much you are alike. You know?

      1. ylewis

        Agreed. Every child deserves the opportunity to understand himself and be proud of how unique he is, while finding common ground with others.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Sorting things out sounds about right. lol Doesn’t it seem like no matter how certain you are that you are making the right choice, you find yourself second guessing it? I wish making decisions for other people were easy.

  2. Michelle Coontz Knecht

    When our NT daughter Leah was in 1st grade, her classmates laughed at her ASD sister Lindsey who was squealing and flapping. Although it really was innocent laughter, Leah was hurt. I spoke to her teacher, and the next day, she educated her students on ASD, etc, and how important it is to always be respectful toward others. It was a simple, direct lesson. To this day, those kids always ask about Lindsey and how she is doing. They see her at their middle school now and are protective of her. This is why we shouldn’t hide from the diagnosis. There is no shame if you aren’t ashamed. NT kids can’t understand another person’s differences if we don’t teach them.

  3. outrunning the storm

    thank you so much for your eloquent insights as a teacher, it is heartbreaking to hear, but I guess not so surprising. My son has known his aspergers diagnosis since he was 4 and we knew what it was, for reasons I talk about here http://outrunningthestorm.wordpress.com/2011/10/07/mommy-sam-has-aspergers-just-like-i-do/
    if you are interested. He is 5 now, we have read him books about what it means and he worked with a psychologist for a while who talked about it with him too. I am glad he knows, he is proud of it. He tells people when he needs to. He also has told me some of the kids he likes also have aspergers and while I know they do not all have the diagnosis, I don’t think he is far off in spotting it. We do have to work with him on reminding him aspergers is not an excuse not to try at things that are hard. That just because he can’t always tell he has upset someone doesn’t mean he doesn’t have to try to know. In fact it means he has to try harder than anyone else. He knows his autism has given him gifts many don’t have and at the same time given him challenges most people will never face. For him this works. Though obviously every kid is different in what they can understand..

  4. Sue

    This post hits in the head something I’ve been struggling with lately. Thanks for helping me think through how much to share with my son’s peers especially as he enters mainstream kindergarten next year.

  5. Kay

    I just want to say that I love reading your posts! I too have been told how bad it will be for our son to have that ‘label’ within the school system. I try to explain that I honestly don’t care at this point! I will ‘label’ him with whatever in order to provide him with all available resources possible! I know others have good intentions..but they really just don’t understand.

  6. Alienhippy

    Thank you for this post,
    To say I feel emotional is an understatement.
    “They have endured years of criticism about their poor handwriting, clumsiness, social awkwardness, etc. They have been left alone in the world, trying to navigate a mine-field of subtle human behavior, facial expressions, and unwritten rules of social norms.”
    “But they get nothing. Their middle school years are pure hell. They don’t even know themselves why they are different. Imagine being that intelligent and not knowing why your life is so hard.”
    You described my school years in these two statements.
    And the following lines had me in tears.
    “Just imagine how years of speech, occupational, and cognitive therapy could have benefitted them. Would they still be autistic? Of course! But they could have been autistic with friendships and accomplishments and far fewer memories of bullying and humiliation.”
    I’m 42 years old and still trying to forget my school years, I know I can’t so I pray about them and turn the negative into some form of positive to help others understand what it is like to feel so very alone as a child and not knowing why.
    My Dad’s diagnoses of Autism and then my daughter’s diagnoses. Learning all I have had to learn to help my little girl made me see why I had it so very tough at school.
    I thank God that I know now, and my daughter *HAS* got a label.
    I too shout it from the roof tops.
    Love and hugs my friend.
    Lisa. xx :)

  7. rocalisa

    I just discovered your blog and I’m reading back through the entries. I guess I count as an “outsider” as I’m not the mother of an autistic child. But I am the mother of an ex 27-weeker premature baby who has been diagnosed with ADHD and I find myself facing some of the same questions.

    I have Chronic Fatigue Syndrome and depression and I’ve never hesitated to admitting it because I figure that any bit of added awareness I provide to someone may help out someone else in the future. But I’ve been much more cautious about admitting to my son’s “labels” as I kind of felt that it would one day be his decision to make about how open he wants to be about his diagnosis, and if I made it now it would be too late for him to “take it back” later if he so wished. (And in his case, it isn’t so obvious something is non-typical from the outside as it can be with some ASD children, as I understand it.) I still don’t know what the best path forward is for him, but you’ve given me more to think about and I really appreciate it.

    I hope I’m not intruding in a safe ASD space, but I’d love to hang around and follow your journey if you don’t mind.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Are you kidding? Special needs overlap. I have a dear friend with a CMV affected child who is mostly deaf, has cerebral palsy, and a few autistic traits not quite severe enough to qualify for a diagnosis. We compare notes all the time. Of course you are welcome. So many of our experiences are shared, no doubt. You are in friendly territory. :)

      1. rocalisa

        Thank you. I appreciate that. That’s the impression I’d got from your entries, but I didn’t want to be pushing in if I wasn’t welcome.

        I’ll be hanging around.

        I have noticed that, as you say, there are some behaviours and responses that look the same from the outside even if the fundamental causes are different. I could certainly relate to your post to the disapproving woman when you were out shopping. In my case it’s more the crawling under the table, sitting upside down on the chair, has to interrupt NOW kind of behaviours, but the looks you get are the same. I now always try to at least offer any parent I see having trouble a friendly smile.

    2. Alicia M

      I’ll also add (not sure how this will effect you emotionaly) that ADHD may end up as a spectrum diagnosis when the DSM 5 comes out. This is the bible of psychological diagnosis. There are so many similarities between ADHD and high functioning autism, PDD-NOS inparticular that many psychiatric professionals now believe they are all related and that infact the “cause” whatever it may be is common. This makes perfect sense to me as many of the parents of autistic children I know have ADHD diagnosis themselves.

      1. rocalisa

        Alicia, I wouldn’t be in the least surprised should the autism spectrum and ADHD turn out to be facets of the same thing. There are just enough little things in my son’s behaviour to make me believe that. I don’t know enough about the spectrum to say for sure, but I don’t think he would (currently anyway) qualify for a diagnosis on it, but I see behaviours in him that I’ve heard described in relation to autism. Not a lot, just enough to keep me alert.

  8. bl0ssy

    Just wanted to chime in and say “Thanks very much” for this post. I have an acquaintance who has gone to extremes to hide her son’s Asperger’s diagnosis. Apparently she doesn’t want him to be labeled, “just in case” he outgrows it. [Insert dropped jaw here]

    As part of her efforts, she’s cut ties with just about every friend, acquaintance, and social activity she had, yet the news of his diagnosis is still common knowledge. It pains me to think of her “going it alone,” but it pains me even more to know that her son is not getting help that could make a critical difference in his life.

    I have “shouted it from the rooftops” and find it to be wonderfully therapeutic. In my case, I am not shouting about autism but about mental illness and about my own diagnosis (GAD and OCD). Every time I tell someone, I peel away the stigma a little more. I help them understand a little better.

    I think when reveal our imperfections to others, we make it okay for them to have imperfections and to reveal them, too. What a wonderful world it would be if we were all okay with our imperfections, and forgiving of others’ imperfections.

  9. Alicia M

    My husband and I have never tried to hide Liam’s diagnosis from him or from those around us. I grew up one of the kids you described. Were I a child today I would have been given a PDD-NOS diagnosis. I refuse to make Liam feel as if he should hide who he is in any way. To encourage that kind of secrecy is to tell him there is something shameful in his make up. I talk about his daignosis with and around him in a very matter of fact manner. It is what it is. This is our life. I will never ask him to deny his nature. I WILL ask him to strive for understanding of others needs by learning appropriate social skills. I don’t think it is fair to ask others to understand his needs without doing my best to teach him to do the same. I want him to be proud of himself. So I show him through my acceptance of him that he is worthy of self esteem, deserving of friendship in his own right.

  10. Aspergers Mum

    We always said if we thought that we had a child with s special need that we would get diagnosed rather than ignore it, only then can you get the services that you need (well try to get), and the more you can educate the more you can help the child.

    In saying that though i have been nervous about telling people about it as i am also fed up with the comments along the lines of: are you sure, he is fine, he did so well (followed by are you sure), to the extent that i’m finding myself trying to find someone who will tell me that it is all just BS and that it was diagnosed wrong (my son diagnosed with Aspergers with high anxiety).

    The head says maybe, the heart says no.

  11. stepmom

    I am going to comment here under a different name from what I normally use for obvious reasons. Ten years ago, I remarried. My husband had custody of his 2 children. His son was a 28 week premie with a diagnosis of mild CP and some learning disabilities. He has always had trouble socially with his peers and endured a lot of bullying. My husband could not understand this because his son has always been able to talk with adults very intelligently on subjects which interested him. I realised soon that he was probably on the spectrum but his Dad never really wanted to accept that. Several years ago, our son came to me and told me about an article he had read about another teenage boy with high functioning Aspergers. He said I think I have that. I agreed with him and asked if he wanted me to get him some more material on it- he agreed and I got him some books and a work book for teens with Aspergers on social functioning. He is a young adult now but still struggling, not many friends and has trouble holding a job because of his cognitive and physical impairments. It breaks my heart to see him struggle so and I really think his life would be better had he been “labeled” and received more help earlier.

  12. Aspie

    Omg – I would have strung my mother up by the neck if she disclosed my confidential medical records to everyone, especially about autism. They are not hers to play with at will, she was entrusted to guard them while I was too young to do so my self.

  13. tagAught

    I can definitely relate to the things you mention about the HFA and undiagnosed ASD in middle school – that was my *life* in elementary school. To the point where I regularly had psychosomatic symptoms (something that is fairly common in ASD, apparently) of headaches and nausea because I couldn’t tolerate school.

    Unfortunately, I fall into the Aspergers category… and Aspergers wasn’t recognized by the medical community until 1994, the year I graduated high school. (At that point, my mother apparently actually went to the Geneva Centre for Autism in Toronto, where we lived and I grew up – and was told nonsense, that at 18 I was too old either for it to show up or to get a diagnosis.) So I spent my entire school career not understanding *why* I was so different from everyone else; or, conversely, why everyone reacted so differently than I expected them to. Even in Gifted classes, things were different than I expected (I had thought it might be my intellect which was the issue – I grew up knowing that I was intelligent, and having it proved in school over and over again… but it wasn’t that).

    Would a diagnosis as a kid have helped me? Hell, yes! I would have gotten the support I needed, and perhaps had a chance to develop working, efficient strategies for dealing with the challenges I face. As it is, I’ve been trawling through the ‘Net on and off for the last couple of years, trying to come up with ways to help deal with the sensory overloads and some of the other issues I experience, because some of mine don’t seem to either work so well, or be “right” (note that some of the latter turn out to be strategies worked out by people who’ve known for a while that they’re on the spectrum, and they work).

    Would I have wanted my parents to let people know? That’s… a bit more difficult to answer. I definitely would have wanted my family (including my sibs) and family friends to know, simply because then they’d *understand* why in the middle of a get-together I’d go hide in my room. I would have wanted my teachers to know, so that they could understand that there were times when I needed quiet and darkness and huddling, so let me get to a quiet spot and leave me be for a while.

    The world? Maybe. It might well have made things easier for me in school. Some of what people have said above suggest that it *would* have made things easier. Certainly I don’t think I would have minded in high school (which for me was junior high / middle school and high school combined); the kids there were old enough and intelligent enough to understand and absorb that info. But elementary school was such a misery for me that I honestly can’t look at it with an objective eye.

    Perhaps the fact that I feel you’re doing the right thing by letting people know suggests that yes, I believe it would have – I just can’t say it out like that. I don’t know. But I *do* believe that you’re doing the right thing here. The more ASD is exposed to the public by people who understand and experience it, the less “mystique” it will have, and the more it should be accepted as a part of human experience. There’s been some research done recently which suggests that ASD was actually a beneficial adaptation during our hunter/gatherer days; that the willingness to be alone, the detail-observation, and the repetitive behaviour made hunters and foragers more successful. *shrugs* I don’t know what the conclusion might end up being, but reading the research (http://www.sciencedaily.com/releases/2011/06/110603122849.htm) it seems like it has potential. Which would mean that autism was a survival trait for humans, and a purely natural part of the human condition.

    *shrugs* Anyway, that’s my 2 cents (or perhaps 2 dollars, considering the length! There’s a reason I write novels, and not short stories!).

Comments are closed.