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  • Home
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      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
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  • Advice for Parents
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    • A Mother's Story
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    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
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  • More
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  • Our Blog
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    • Infantilization
    • Her Autism is Worsening
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  • Autism Tutoring

On the Stigma Autistic Parents Face: Caley's Experiences

6/23/2014

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Many of you, reading this title, may think I’m going to write about the stigma that parents of autistic children face. While this is definitely material for a great many posts on its own, the population I’m writing about is the opposite side of the coin, who go unspoken of; Autistic people who want to have children in the future. You may think I don’t have enough material to write about this. After all, I’m not Autistic and Caley’s not a mother. I really, really wish you were right.

The not so subtle hinting started, I think, when Caley was in middle school and discovered how adorable babies were. She’d coo at them and play with them and openly admire them. She even declared that she wanted her own someday*. That’s where the ‘nudges’ began. First it was warnings. “You know, babies are a lot of work.” Then it came out into the open. In the years to follow, pretty much any time she expressed liking a baby, Caley was reminded repeatedly that because she was Autistic she shouldn’t have children. Why? Well, she wasn’t competent enough, they said. And besides, Autistic people are well known to have fill-in-the-blank problem(s) which would make it so she couldn’t handle having a child, they said.

Suddenly, Caley stopped liking babies. In fact, she started acting like she wanted nothing to do with them and saying that she hated them. What had happened, my mother and I wondered, to cause such a dramatic turnabout? Now, all these many years later, she told me. Since she was told she couldn’t have babies, Caley says she decided to try to convince herself that she didn’t like them, to reduce the pain. This period lasted for years – all the way until this past year, in fact.

What changed? Well, in this past year, Caley has come into her own and has finally told us her dream, which despite the work of those many years of denial, never died. She wants to have children. Not now, of course. She wants to graduate, get married, and become financially stable first. But she definitely wants them. And now that the family understands autism a bit better, most members support her.

Society, however, still does not. And so it was that Caley called me in tears four months ago. She’d stumbled upon a post online where the person was arguing that Autistic people would be terrible parents. The full post tried to rationalize why autistic people shouldn’t be parents, through “logic.” I think the first sentence of the post – “I am not saying you would be an unacceptable mother and compared to having no mother or having a violent mother a mother who simply does not care about their kids I think a loving, autistic mother is a good alternative.” – kind of says everything. Maybe if she hadn’t been told growing up that being Autistic would make her an incompetent mother, this wouldn’t have hurt so much. After all, this is the Internet and people make highly offensive claims about subjects they know nothing about all the time.

But to someone who grew up exposed to the narrative Caley did, this hit home. So instead of brushing the author off as a troll or typing out an angry reply, she turned their words inward. “Is it true? Would I really be a bad mother?” she asked me, voice trembling. “Because if I would then I need to know so I don’t have children.” We were spiraling downward, and Caley was right back on the path she’d trodden for so many years, the one where she was going to try to convince herself, again, that she didn’t actually want or even like babies. Far better to believe a lie than to feel the pain of reality.
“No, babe,” I told her. “This guy doesn’t know what he’s talking about.” And then I proceeded to rip the poster’s “argument” apart and show it for the farce it was. “Oh, good,” she said. “But why was he so mean?” The answer to that, of course, is ableism. 

The commenter wasn't trying to be mean, of course. He thought that was a perfectly rational and acceptable argument, and presented it in a very logical manner, citing the damning “facts” that autistic parents can’t tell the difference between tones so they won’t know why a baby is crying, or when their teenage children tell them their day at school was “Fine” autistic parents won’t be able to read their tone and tell how it was. (If this disqualified one from parenthood, there would be a great many fewer parents in the world…)

The people who told Caley she shouldn’t have babies didn’t realize it, either. They were just following common sense. Everyone knows autistic people shouldn’t have children (it will never fail to surprise me how many of the things “everyone knows” are patently false). Caley is Autistic, and therefore, following their logic, she should not have children. To remind her of this fact was difficult for them to do, but it was their duty to do so and it was all for the best. Or so they thought.

What these people don’t realize, however, is that there are plenty of autistic mothers and fathers all over the world. In fact, that seems to be one of the greatest routes through which autistic adults are diagnosed – their children are found to be autistic, and the parents realize, in turn, that they are, too. Mothers, fathers, grandparents, great-grandparents, autistic people have filled all these roles, and done quite a good job of it, too.

When ableism really sneaks up on you is when you don’t even realize it’s there. It oils its way in under the guise of ‘common knowledge’ and its claims are never questioned. But, once you realize its presence, its foolishness becomes apparent and you can fight back against it. And that's exactly what most of the people who once warned Caley she shouldn't have children have done, now that the ableism involved has been made clear to them. But they had to have it pointed out to them first.

That is why I write this post. To show it to you. To warn those of you who are parents of autistic children to make sure you don’t accidentally reflect this attitude or allow others to reflect this attitude onto your children. (Because it starts young.) To show those of you broader members of society that this outlook really is a problem, so that you, too, can combat it where you see it.

For my part, all I can say is this. If and when Caley decides to have a child, or even multiple children, I will be right behind her supporting her. And those children will be some of the luckiest children in the world to have Caley as their mother.

-Creigh

*Though I focused this post on the Autistic experience, about the same time that Caley was warned about her love for babies, to highlight the plight of siblings, I would like to add that I was warned, too. As a sibling of an Autistic person, I am more likely to have an Autistic child, I was cautioned. I should strongly weigh this when I was deciding whether or not to have a child, and I needed to warn my future husband of this possibility and “be prepared for the worst”. Though my competence was never questioned, there was definite hinting that I may wish to consider not having children. 

For years afterwards, I worried about this, and though I never went quite so far as Caley did, I thought that if I ever got married, I would have to marry someone who was okay with adopting, because having children who shared my genetic material was too risky. If someone tells you the same thing enough times, particularly when you’re as young as I was, you’ll believe them. Now that I’m older, funnily enough, I still think that if I have children (that is a big if, mind you) I’m going to want to adopt. The difference, however, is that now I would purposefully want to adopt an autistic child. It's ironic that the very thing I was warned to fear is now the very thing I would seek out.

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Presuming Competence: What Autism Professionals Need to Know

5/26/2014

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Just because we’re Autistic and we’re not supposed to be able to read things, that doesn’t mean we can’t tell that you’re presuming our incompetence. I had to go to a lot of so-called “professionals” when I was younger. They would spend our lessons teaching us using “happy faces” and “sad faces” and asking us which was appropriate for the time. It was incredibly boring, and I knew which was which very easily, but they never moved on. I was in elementary school the first time I ran into that exercise, and they were still using the same thing on me when I was in high school. 

I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call. 

A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.

When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent. 

At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.

At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.

All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.

That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.

-Caley

Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.
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The Day I Faced Discrimination for Being Autistic

4/22/2014

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Originally posted: April 8, 2014

My discrimination story begins in a surprising place – an autism support group. I volunteered there for many years, caring for children during meetings. One day, a new mother came to the group, and brought her autistic son with her. I asked if I could watch him in another room, and was met with a flat out refusal. I was surprised. I’d been doing this successfully for a long time with many parents’ children and had never been met with anything but appreciation. Why now would this change? At the end of the meeting, the mother approached me, apologizing for not having trusted me with her son. Someone had been talking about another girl at the meeting who was autistic, she said – and she’d thought that someone was me. 

In short, even this mother of an autistic child was judging me not by my actions, but by her stigmatized view of autistic people. The moment was made all the more painful because the girl the woman mistook me for? She was my little sister, Caley. Up until that point, I’d never really given much thought to the stigma Caley bore, thinking that people would just see her for who she was. It was a shocking moment for me when I realized that Caley had to confront that stigma every single day.

Looking back at my sister’s life with that revelation, I now realize that her entire life has been shaped by stigma. When Caley was growing up, people were quick to tell us what she couldn't do. She'd never go to a ‘normal’ school, never read, never write an essay, never pass an Honors class, never pass an AP class, never go to college, never be able to live away from home. In short, Caley would never be where she is today, having done all of those things and more. Yet with each new hurdle passed, and each naysayer discredited, a new person steps up to take their place. Are they judging her for who she is or what they imagine an autistic person to be? Given how successful she’s been, it’s clear it’s the latter.

The problem isn’t with the label of autism, but with what we imagine it to entail. There is a stigmatizing narrative in society that autistic people are not only different, but also lesser. If you were to imagine an autistic person based on this narrative and nothing more, you would imagine a person who cannot communicate, is unintelligent, emotionless, violent, incompetent, and needs to be saved from themselves. Yet those of us who know autistic people know little could be further from the truth.

But in recognizing the problem, the solution becomes clear. Stigma comes from ignorance and misinformation and the best weapon to combat that is education. So not just this month, but every month, I’m going to ask you to take up arms against stigma. If you’re new to the autism community, make an effort to learn about what autistic people are actually like. And if you’re an old pro, join Caley and me in educating people about what being autistic really means. Every single time you hear someone spread a harmful myth about autistic people, whether it be online or in person, speak up! Your actions may feel small, but know their impact is huge. 

Working together we can make a better society for autistic people. 

-Creigh
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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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