Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Sunday, February 17, 2013

How did I know my daughter was autistic?-Autism Parenting

I am now going through the fourth article in the December issue of Autism Parenting Magazine. This one is "How did I know my daughter was autistic?"
It has some problems. First off, it goes with the old "something was wrong" kind of reaction. Autism is a disability, but that "I knew something was wrong" statement reinforces that we are inherently wrong. Knowing that development is atypical doesn't have that effect, but since it lacks the emotional impact that people seem to be going for with autism articles, no one ever says it like that. This is a problem. Among other things, it reinforces the concept that autism is something wrong that needs to be defeated and perhaps that it is scary and bad. That's bad for Autistic adults, and if you have an autistic child, you will someday have an autistic adult.
Secondly, not all autistic people have sensory processing issues. It's an overwhelming majority, but it is not 100%. False claims are false.
This is an issue I take with medicine in general, but a sensory difference does not need to be considered a dysfunction. Being able to spin for hours without getting dizzy, for example, is a sign of sensory processing differences, but it is not itself a dysfunction. I'd say it's an extra function.
In the description of her daughter as a toddler, I noticed several issues as well. Toddlers can and do have tantrums, but a 45 minute extravaganza is more likely to be an overload-induced meltdown. There is a difference, and continuing to call them tantrums as she gets older is a form of infantilization. There is also the assumption that she is throwing herself on the floor "randomly," which is highly unlikely. Just because a neurotypical parent does not understand the reason, that doesn't make it random. Similarly, there is a reason that that she would start hitting herself on the head or head-butting things, even if her mother doesn't know what it is.
Finally, in the conclusion she calls Asperger's a behavioral disability. That's not what it is. It's a different kind of neurology. It's a neurodevelopmental disability, specifically. Strange as it might sound, the behavioral issues that frustrate parents are not the core of autism, and are not the defining factor of what autism is. It's not all about the parents, and that is one example of making it about the parents and caretakers that I can't let slide, not even in a parenting magazine.


  1. As a parent of 3 boys on spectrum I view posts like these in a split way. Part of me agrees with you. Autism is an integral part of my boys. Honoring that part of them while helping them achieve their goals in a world that is culturally different from them and is not flexible (oh, the irony) in accepting differences is my job as a parent.

    But I am a parent. And like most parents of people on spectrum the initial diagnosis was an unpleasant (to say the least) shock. The idea that my son (now my sons) might never talk, go to college, were at high risk of seizures/anxiety/being abused were overwhelming. I tried the cure/healing method. I admit that I got over the idea of a cure pretty fast. It didn't seem reasonable. But the idea that symptoms could be helped by diet or supplements seemed reasonable. And because I have some medical background I felt I could choose things that at least were non harmful.

    But there is so much fear that descends on a parent when a child is diagnosed. Some from non reassurance by the doctor. Some from media. Some from ignorance. Some from reality. Even now I know that my middle son will probably wind up in a supported living situation which will expose him to decades of care from strangers. Who could abuse him.

    I am glad for self advocates like you getting the reality out there that autism is a different way of thinking, not worse. But I ask you to have compassion on parents, especially newer parents. Work towards education of these frightened people without alienation them with derision. Save your condemnation for the groups and people who prey on their fears and offer them false hope for false fears.

    1. I am compassionate towards new parents while I tell them exactly how wrong they are (seriously, I was nice to the person who called it a kick in the *** when he found out his brother was just diagnosed and handed him resources,) but once you start writing things for a magazine that are helping spread the problem, I care much more about smashing everything wrong than the comfort of someone who is now spreading it. If that's uncomfortable for you to read, there's a reason.

  2. spectrummom,
    There is so much fear about autism because there is so muchmisinformation about it. If Alyssa, and people like Alyssa, aren't out there busting up these terrible misconceptions, they spread like wildfire. And that's where we are in a "fear autism" culture.
    My daughter is Autistic. And if I am saying something harmful to her and her people, I want to know right now in a no nonsense way. Because my feelings being hurt over the fact that I am being insensitive or offensive, is a small price to pay for my daughter's feeling of self worth. And it is a small price to pay for not being part of the larger problem of propagating misinformation and using damaging language.
    If you're going to put yourself out there in a magazine, you open yourself up to criticism. Especially when you say hurtful things.

  3. And PS Spectrummom, Alyssa is out there doing the really, really, hard work that will pave the way for our children. She obviously should not be criticized for lack of compassion.

  4. I think what spectrummom is trying to express is her discomfort at the pain of parents. What she doesn't realize is where it's coming from. We've been so brainwashed that we believe we're in pain simply from a diagnosis of autism and from all our images of what that means. No. We're in pain because of the system of discrimination - that is so indoctrinated that we don't see it - against autistic persons. We are told "they" are Not One of Us. "They" are told they are Not One of Us. That disconnection is what causes our pain upon diagnosis.

    When Alyssa and other autistic persons cry out to say, "This public discourse right here says I am Not One of Us. That is wrong!," parents protest. Because it is too painful to imagine that is what we're saying. And it is. To tell Alyssa NOT to say this is saying "You are not allowed to point that out because you are Not One of Us."

    The pain is real. It is not caused by Alyssa. It is not caused by autistic persons. It is caused by a system of discrimination against disabled persons and autistics. Will we stop to acknowledge that or keep enforcing it?

  5. spectrummom

    I am non-speaking Autistic, never attended college, do not have a regular diploma, have seizures almost every day. I am very disabled.
    I am happy. I do not live with my parents because I have my independence, the independence I can have. My mind is independent.
    You are not wrong in worrying because society is not ready for us, but our lives are not more unpredictable than any other person's life. I could give you examples in my own family, a kind of comparison among my life and some of my cousins.
    The right services and supports will come easier when we have parents backing our efforts and listening to us when we try to debunk myths and show why certain things do not work
    Receiving a diagnosis is only hard on parents because of the deficit model. We are not wrong and even someone "like me", with very visible and real needs, have a lot to offer.

  6. This comment has been removed by a blog administrator.

    1. Spam, spam, eggs and spam, spam hash, spam and potatoes, spam spam spam!

  7. i was trying to find the actual article you referenced, so i could read it as well... unfortunately, i was only able to find an image of the cover. it did however have this 'teaser' to the reference article:

    'My first child was a beautiful, healthy, bright eyed little girl. As an educator I had such high hopes. I hung black and white pictures next to her changing table and read to her every day. Then one day, my experience in education told me something was wrong with my beautiful baby.'

    yes, it's written for dramatic impact. i was hoping for something a bit more informative... however, as i mentioned - i have not read the entire article. i am an educator... no, i did not hang black and white pictures next to my daughters changing table or read to her everyday - hmmmm, am i a failure as a parent according to the standards of this article?

    unlike the author though, i *do* have high hopes for my daughter... just as i do for all of my children. i didn't 'one day' think something was 'wrong' with my daughter - regardless of my experience in education... regardless of the fact i already had raised one daughter previously.

    my daughter does have sensory issues and, at times she has been prone to self mutilation. her meltdowns are few and far between and i would never belittle them by calling them 'tantrums'. i know my daughter needs accommodations... needs assistance - i know by advocating for her in the best way i can, respecting her individuality, keeping an open line of communication - my daughter will one day open her wings and fly.

  8. Ah, but Alyssa. Asperger's IS a behavioural disability. Don't you remember? The DSM says so. The symptoms of the ASDs are AAAAALL the little ways that Autistics annoy allistics. And we do it with aforethought and malice! /snark&sarcasm

    (I echo that phrase -so- much.)

    1. But people with autism can't be sarcastic! That's not possible!
      (The DSM doesn't actually define Asperger's as a behavioural disability, right?)

    2. Ofcourse we can't, but I'm very high-functioning, you see. I had therapy, and now you can't tell I'm a person with autism anymore. [Sorry, I seem to be particularily snarky today.]

      No, it's not. It's [lets see if I can remember this correctly]in DSM-IV-tr Axis 1, Clinical Disorders, conditions that may be a focus of clinical attention;
      Disorders usually first diagnosed in infancy, childhood or adolescence;
      Pervasive Developmental Disorders;
      Asperger's, Autism, CDD, Rett's and PDD-NOS

      But the autism cousin ADD/ADHD is classified as "Disruptive Behaviour Disorder".


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