Speak for yourself…

8 Jun

“Autism isn’t a tragedy, ignorance is.”

“I don’t suffer from autism, I enjoy every moment of it.”

“I don’t suffer from autism… I suffer from ignorant people.”

There are countless websites, online groups, and Facebook pages dedicated to these taglines. These sites, run mainly by people who identify as being on the spectrum (and others run by parent advocates) argue that autism is not bad, sad, or unfortunate. It does not cause people to hurt. Autism is a beautiful diversity and should be celebrated. And those who would say otherwise….They are “hate-mongers”. Wishing your child didn’t have autism, or hoping for a “cure” makes you unloving, and unaccepting, according to these sites.

Here’s the fundamental issue I have with these arguments….

Your experience does not give you the right to deny another person’s experience.

Your experience does not negate the experience of another person. Matter of fact, your experience doesn’t actually have anything to do with another’s.

Your experience does not give you the ability to make blanket statements for all people in similar circumstances.

I just can’t fathom that someone could look at a child with autism screaming, crying, bashing his head into a wall until it bleeds and say “That’s not tragic” or “They’re not suffering because of autism.” I can’t wrap my head around someone seeing the news stories of another dead autistic child because he wandered away from home, and say that child, or their family, didn’t suffer at the hands of autism… Instead they would argue that they suffered at the hands of the “ignorant” public. I can’t comprehend that someone could watch a child with autism be unable to get their needs met because they can’t communicate, and say that his inability to communicate is not the tragedy… those around him not being able to read his mind is the tragedy.

Honestly, I’m of the opinion that (while I know there are many great qualities about it) autism causes an enormous amount of pain, struggle, and difficulty for A LOT of people. Those diagnosed, and their families. I’ve seen it. I’ve lived it.

And, with that said, I will also make clear that I know not all people affected by autism are of the same opinion… and that’s okay!

Having an opposing view on the “tragedy” or “suffering” related (or not related) to autism does not threaten me, nor does it even bother me… when you are talking about your own experiences. But representing your opinion as fact on behalf of the entire autism community is wrong, unfair, and offensive.

Just how so many of these same spokespeople say “Autism Speaks doesn’t speak for me”…. You “advocates” don’t speak for ME, my brother, or other people, either. NO ONE speaks on behalf of everybody, and the sooner people recognize that, the sooner we can stop waging wars on who is “right”. You speak about your experiences, I’ll speak about mine. You hold opinions based on your experiences, I’ll hold opinions based on mine. And even when our whole-hearted beliefs don’t align, that’s okay. They don’t need to. Let’s respect that our own life experiences don’t override the experiences of another person.

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14 Responses to “Speak for yourself…”

  1. Helen June 9, 2014 at 1:56 pm #

    Wow. Just wow. You said what I always say but way better. Thanks!

  2. Deanna June 9, 2014 at 6:49 pm #

    Well said.

  3. Sean MacNair June 10, 2014 at 8:06 am #

    Yes, yes, a thousand times yes!

  4. Sheryl June 10, 2014 at 9:01 am #

    Yes, yes, yes!

  5. outoutout June 11, 2014 at 7:34 am #

    With respect, a couple of things…

    1. The purpose of the self-advocacy movement is not to “speak for” anyone else on the spectrum. It’s to create an environment where Autistic people can speak for themselves, in whatever capacity possible, and be taken seriously when they (we) do. Which is something that rarely happens, unfortunately.

    2. I can’t fathom *anyone*, Autistic or not, watching a kid in full self-injurous meltdown and thinking “that’s not tragic”. Or hearing about a child who wandered and blaming it on public ignorance. That’s not the sort of thing self-advocates are talking about. At all.

    3. It’s more than just a difference of opinion. These people are Autistic. Not “parents of”, “siblings of”, “cargivers of”… they’re actually Autistic. Which means that their very perspective is different from yours and others who are not ‘on the spectrum’. You simply cannot compare the two.

    4. Despite the “countless” blogs and FB pages you’ve seen, Autistic people struggle to have their voices heard in the wider conversation. 99% of all books, literature, and organisations on Autism are from a parent/carer perspective. Those of us who do speak (only for ourselves!) are often dismissed as being “too high-functioning” to have any place in a conversation about what “real Autism” is like.

    5. It’s easy to say “live and let live” when you’re not the one being called broken, a tragedy, or needing a cure. Or not being listened to.

    • angelina258 June 11, 2014 at 7:52 am #

      But that’s exactly what I’m talking about…just because someone feels autism is tragic/sad/needs a cure/etc has nothing to do with you, or others with autism. That is them speaking about how they have experienced autism. Which is as valid as your beliefs and experience. What they’re saying has nothing to do with your life and your experience of autism. As far as people agreeing meltdowns can be tragic, that’s not quite what I was saying. The push-back I’ve seen is that people saying yes, that meltdown or self injury is tragic, but the child’s autism did not cause the meltdown (“allistic ignorance” or something similar is the cause), so therefore the autism is not the tragic part.

      • outoutout June 11, 2014 at 4:58 pm #

        I guess I would disagree that it has nothing to do with me, because the negativity has a cumulative effect that goes far beyond individuals speaking about their “experiences”. We live in a world that is suspicious (at best) of people who are different, that marginalises people with disabilities, and ultimately blames us for bringing everyone else down. Yes, blames *us* personally. Even if you don’t believe Autism is/should be an inseparable from the Autistic person, the message still comes across: it’s all your fault. You’re a burden. If it wasn’t for you, your parents wouldn’t be in financial trouble, wouldn’t have gotten divorced, wouldn’t be an emotional mess, wouldn’t have all these problems, etc. I’m sure you’ve seen the infamous Autism Speaks “I Am Autism” campaign? “I will destroy your family, I will squander your life savings…” These comments aren’t made in a vacuum.

        ^^ And that’s a big part of what the self-advocacy movement is trying to address.

        Regarding meltdowns, it sounds like you’re talking about something specific that someone said somewhere on the Internet? I’m not sure what it is or whether that’s representative of the Autistic self-advocate community (recalling the thing about “you don’t speak for me”, etc). I can only give you my own perspective as an Autistic adult who was once an Autistic child who had violent meltdowns. Most of my meltdowns were the end result of an escalated situation. Yes, there were many instances where the adults unwittingly contributed to the chaos; it wasn’t all about me. Over time, I learned better ways of coping, although meltdowns still happen and that’s just part of life. BTW, I also have two sons, both of whom are on the spectrum (quelle surprise) and they threw some absolute corkers in public when they were younger. Our focus was on preventing them wherever possible, and finding ways to help them cope more effectively. Sometimes it works, sometimes it doesn’t. But yeah… I don’t believe it’s a litmus test for whether Autism itself is “tragic” or not.

    • maggavaff June 11, 2014 at 8:19 am #

      Great comment outoutout. I was thinking the same thing after reading this post.

  6. Nancy June 12, 2014 at 9:59 am #

    Thank you for this post. There are many adults with autism that wish for a cure and they are not welcome as a voice of diversity. They are mocked and put down in a way that that the ND community would see as abusive if it were happening to one of their own. If you can argue against a cure, you don’t need one.

    • outoutout June 12, 2014 at 5:40 pm #

      1. Wishing for a cure for oneself is a bit different from wishing for a cure for “Autism” in general. Unfortunately, there’s much more of the latter than the former, and mostly coming from people outside the Autistic community**.

      2. I’m truly sorry if others have mocked or put you down for feeling as you do. That’s not right, and it’s not what ND is all about.

      3. “If you can argue against a cure, you don’t need one” – I’m not sure what this means exactly. Are you saying that one’s desire for a cure is inversely proportionate to how severely affected they are? Or are you saying that only people who can express a wish to not be cured shouldn’t be cured? Either way, I disagree. Autism isn’t just a spectrum; it’s a constellation. Every person is an individual with their own subset of challenges, and their own feelings about themselves as human beings. Non-verbal Autistic people can still communicate a desire to be as they are (and they have!) just the same as anyone else. You can’t predict, and it shouldn’t matter anyway.

      4. Of course, all of the above is beside the point about the general “tragedy-burden-cure” social mentality I talked about earlier, and how it’s harmful to *all* Autistic people. Personal choice vs. cultural bias.

      ** as distinct from the Autism community, which includes allies (caregivers, parents, friends, siblings, etc)

      • outoutout June 12, 2014 at 5:54 pm #

        Oops – I meant “directly proportionate”!

  7. Safistakitty June 15, 2014 at 3:35 am #

    My daughter is very high functioning, she can communicate, but not in a way that tells her story honestly n fully, it just gets too complicated, her diagnosis isn’t a tragedy, it’s a blessing in many ways people just never think of, but the pain she feels n goes thru daily, I wish I could fix it so she doesn’t gave to, no parent wants to see any child suffer in ANY WAY.. But she did suffer more than others with out her learning n social challenges. I feel devided when I advocate for her, I never want someone to think I’m saying her being autistic defines her, or it’s a putty ploy in some way, but sometimes you have to tell the whole story to really celebrate the amazing accomplishments she has had. My daughter isn’t a victim and we are not victims of autism, we r not survivors of autism, we r just a family doing everything we can, as all parents do, to help our child become productive, happy, successful to the best capacity adults! No different than someone without a challenge in their lives.

  8. educationcomboplatter June 20, 2015 at 5:58 am #

    So…I just want to address a few things here:

    1)Autism is not co-morbidities. It can exist alongside intellectual disability, GI issues and epilepsy but it is not any of those things. No-one is fighting for your child’s right to have gastric issues, for example. By the way, LFA Autism is shorthand for Autism + Intellectual Disability + maybe nonverbal. But I agree that we could do a better job of standing up for the people who are multiply disabled. But there is the crux: they are multiply disabled.

    2)There is a huge difference between “treatment” and “cure” in the context of the neurodiversity movement.

    3) No-one is advocating that you allow anyone to fester in a corner, for example. They’re asking that you don’t confuse real gains (e.g. communication) with ‘more like typical’ (e.g. speech). Work on child’s speech skills by all means but not at the expense of communication. I’m not saying you do this at all. A lot of people do this though…I’ve had lots of conversations with parents that go like this: Me: blah blah blah no cure Them: I just want to have a conversation with my son, is that so wrong?!! Me: Um…nope, perfectly understandable. Have you considered Augmented/Alternative communication though? Them: No, what’s that? Me: *explains* Them: Ohhhhhhhh Yeah, I’ve had lots of conversations like that so ….

    http://leftbrainrightbrain.co.uk/2009/05/17/a-neurodiversity-faq/

    http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

    http://wearelikeyourchild.blogspot.co.uk/2014/05/a-checklist-for-identifying-sources-of.html

    http://www.autismatlas.com/autism_cure_vs_neurodiversity.html

    http://diaryofanimperfectmum.blogspot.co.uk/2015/03/i-found-cure-for-autism.html

    http://autisticshs.blogspot.co.uk/2014/04/wanting-cure-means-you-dont-love-your.html

    http://www.autismacceptancemonth.com/wp-content/uploads/2013/03/whyacceptance.pdf

    http://www.autreat.com/dont_mourn.html

    http://www.autismacceptancemonth.com/be-the-very-best-you-you-can-be/

    http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/

    http://lifehiswayblog.wordpress.com/2013/04/12/changing-the-child-vs-helping-the-child/

    http://respectfullyconnected.blogspot.co.uk/2015/02/face-truth-what-you-really-mean-when.html

    http://neurowonderful.tumblr.com/autismmasterpost

    The blurry quotes that go “I’m disabled by ableism” ARE speaking only for themselves. That’s what “I” MEANS.

    Things like Ari, president of ASAN? Well, the CEO of Sainsburys can say “We” meaning Sainsbury’s….same thing

    .

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