Autism: Don’t Ask, Don’t Tell?

Posted by on Feb 19, 2014 | 4 comments

Autism: Don’t Ask, Don’t Tell?

I am very fortunate to have a vocal readership. I receive a lot of comments, messages, and emails via my Facebook page, here, and on redOrbit. Some are of the “me, too!” variety, many are requesting advice, others are autism parents reaching out to an understanding ear.

Then there are the rest. The criticisms, the angry voices opposed to what I’m saying, the ones I’m just not sure about. The ones that make me shake my head and say “wtf?”

Yes, I actually say “wtf.” Clearly, I’m a fourteen-year-old girl trapped in this forty-something brain.

Normally I shrug them off. Occasionally I address them, when I feel like the writer is completely out of line or misconstrued my intent. More often I simply thank them for taking the time to read my work. It’s always nice to be read, whether or not it’s appreciated.

This week I received an email, in response to this post, that not only got my attention, it really got my ire up. Instead of merely ignoring or answering the email, I thought it would be better played out here, where I can share it with a wider audience. I honestly believe this is a subject that should be talked about.

Loudly.

Here is the email I received:

Dear Wendy,
I am assuming your story ‘Dear Son, You Have Autism‘ is real.
I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on your story, as quite normal.
Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling our kids with the whole spectrum of disorders.
This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has (sic) not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.
SXXXXX
ps. I worked my whole life as an academic, educator and researcher and remain very critical of many of the modern classification – labelling (sic) methodologies. In particular terrifying is that these people are ignoring huge probability of being wrong.

So many things to say here. Where should I begin? I think I’ll go through it line by line.

I am assuming your story ‘Dear Son, You Have Autism’ is real.

If you had taken the time to look at my website, you’d see that yes, in fact, our story is indeed true. I don’t write fiction.

I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on  your story, as quite normal.

Tell me, how, exactly, does an autistic individual look? I’m guessing you don’t look ignorant, yet here we are.

What’s in a label? You call yourself an “academic,” and that’s a label. Some labels are pretty awesome. “Nobel Prize Winner.” “President.” “Canadian.” Why not call a spade a spade?

The larger issue here is the statement that my son looks, to you, “quite normal.” What, pray tell, is “normal?” Should I tell my son that since he can “pass” as normal, that he ought to? That he must hide his true identity, like the Jews in WWII, light-skinned blacks in the 1950’s and 1960’s and gay teenagers today?

That opinion puts you in pretty bad company. To insist that my child pretend he is something that he is not for your comfort or your ignorance or his safety makes you no better than the Klan in my book.

Harsh words, yes, but so is telling me to hide my child’s true self.

I have no more intention of keeping Jack’s autism from him than I have of keeping his place of birth or Scottish ancestory a secret.
Jack was born in Indianapolis. He is a direct descendent of William Wallace. And he has autism.

To say that my son should hide his autism like something to be ashamed of is absurd, ignorant, and discriminatory.
And I will not do it.

Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ (sic) may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling (sic) our kids with the whole spectrum of disorders.

This is true. It would also appear that you do not have a firm grasp on it yourself, or you would understand that a neurological variance such as autism is not something to be “terrified” of. Your statement that telling autistics that they are, in fact, autistic, will crush their self esteem and confidence is the exact reason we should. The opinion that someone with a difference should think of themselves as “less than” is antiquated at the very least.

What is that telling my son? That he should be ashamed of who he is? That he should wonder for the rest of his life why he doesn’t seem to think the same way as his peers? Why, when telling him the truth will set him free of wonder and worry?
I want my son, and all people with autism, to be proud of themselves. To be confident. To know that there are people out there, like yourself, who fear what they do not know and understand. Autistic individuals face enough difficulty and hardships in their daily lives, they shouldn’t have to add shame and fear to the mix.

We have evolved as a people. We are better than that.

This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.

At this point I would like to point out that you appear to have autism and ADHD/ADD conflated. Autism as a term has been around since the early 1900’s, and ADHD/ADD are not spectrum disorders. I am around the same age as your son, and I, too, was diagnosed (not “labeled”) with hyperkinesis, or being “hypersensitive” as a young child. I am not ashamed of it, nor do I believe it was an incorrect diagnosis.

You also seem to be assuming that we have not had our child assessed and diagnosed with professionals who know anything about biology, chemistry, medicine or neuroscience. You claim to be an academic, yet how much of these do you know? My child has been seen and assessed my no less than twenty professionals, including specialists in brain function, speech and early speech acquisition, sensory processing disorders (including fine and gross motor function), psychiatry, and numerous other disciplines.

They all agree: my child is incredibly intelligent, and definitely autistic.

I am pleased that your son finished his education brilliantly, yet saddened by the sense that you feel the need to justify him. He did not accomplish what he’s done in spite of who he is. He has triumphed because of who he is.

And that, my friend, is no less than what I want for my son.

So, I end this on a lighter note than when I began. I beseech you to keep your mind open to differences, and understand that children like mine may very well be the future.

Certainly, hiding in shadows and telling lies is no way to live anymore. History has told that story time and again.
I will leave you with the statement my son Jack has about having autism. This is his story, after all.

“Autism is not about your voice. It’s about your mind.”

And that’s all we have to say about that.

voice mind 2

 

A version of this post originally appeared on redOrbit blogs.

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  • Michelle Amond Yost

    As always. I love you. I love Jack. You answered this perfectly….and put it out there for all the others who say and think the same as this person. Meaning no harm…but doing plenty along the way.

  • Courtney

    love this so much

  • carol oates

    Great response. I enjoyed the original post too. I fail to understand what this person is thinking at all.

  • Nicole Dixon

    My daughter has autism and I totally agree with you. She is awesome and she inspires and teaches me everyday as well as my other children who are not on the spectrum. It is so important to just acknowledge that they have a difference and that we should not ignore it or hide it away. it is to be embraced and better understood. http://www.harbourpublishing.com.au/products/books/via