Tag Archives: disclosure

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.