Who has a right to talk about Autism?

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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13 Responses to Who has a right to talk about Autism?

  1. Angel G September 17, 2011 at 8:01 pm #

    Excellent post as always, Stuart

    I may not have Autism myself, but I’m certainly affected by it. I see what it does to my children. I can certainly empathize. And I will do what I think is right for them. And I will talk about it to people as a way of enlightening them to Autism. I feel no need to apologize because I speak up for my children.

    There is so much fighting within the Autism community. We need to get to that point where we can agree to disagree without it turning into a flame war.

  2. Marita September 17, 2011 at 8:05 pm #

    fantastic post.

    I hope I’m setting the right example for my girls. Trying to spread the message that everyone is different and that is okay.

  3. Rob Gorski September 17, 2011 at 8:32 pm #

    Stuart,

    Until I read this I hadn’t noticed the tone of the comment in question. Now you last comment makes a whole lot more sense.

    You are right once again.

    We should be united by our cause not divided by our differences.

  4. Katrina Moody September 17, 2011 at 8:47 pm #

    Excellent post, Stuart! I’ve recently been very concerned with this us versus them mentality I’ve noticed cropping up more and more. I’ve even heard (and noted with frustration) and responded to parents who say no one has the right to talk about or write about autism if they don’t have a child diagnosed with it themselves. My response continues to be – how to we effect change and spread awareness if we DON’T allow those who aren’t part of the community to write and talk about it, to try and understand it? *Shared & Tweeted* You rock, my friend!

  5. Luvmyboys September 17, 2011 at 9:58 pm #

    Very well written, straight from the heart post and your points make absolute sense.
    That comment is just ridiculous and I honestly believe the writer has to be a young immature kid who is prob too angry to express his true thoughts in a nice way. I see alot of that here & there-these stark raving mad comments aimed towards autism parents written by folks with autism who have some form of resentment & deep hurt. Some of them are just nasty & rude. Some try their best to explain in a kind way why they feel the way they do. I’m no psychotherapist BUT…
    I think their feelings have nothing to do with us really! I think they have unaddressed issues stemming from their own life & family history. I’m not speaking for any or all of these ppl, but I’ve read on many occasions how some adults w autism hold anger towards their parents for not understanding, not helping them overcome issues & sadly, how some parents actually aggravated symptoms making childhood all the more difficult for them. I read horrible things these adults w autism complained about how their parents treated them. My heart aches for them. One would think our(u,me,etc) efforts to do EVERYTHING in our power to support, treat, teach, help our children would be appreciated & respected?!?! But u know not everyone is in a place to do so. If they r still hurting, still hold anger, still sad & struggle everyday….
    My point is, I don’t take these comments seriously. They don’t know what they’re saying, they can’t possibly understand us, our life as autism parents & the struggles/issues we face.
    Our children may one day bc we bust our asses to instill these values in them…along with the tools to overcome their challenges, in the environment needed, with individualized accommodations & a boost of confidence so they know that no matter what-they can succeed! It’s gotta be hard for someone who never had that to really “see” it. Infact, its no wonder to me how it can certainly lead to feelings of resentment.

  6. Bliss September 18, 2011 at 8:27 am #

    As the mother of two young boys with autism….I want EVERYONE talking about it! I want it discussed so often, in so many different circles, that it’s just a given that a portion of your workplace has autism, that is always assumed that some of the children in the class have autism, that a cop stops and thinks when assessing the behavior of a suspect “could this person’s behavior be explained by autism?” The fact remains that, as of this moment, the people who have the power to effect change in the law, in hiring and training practices, in school administrations, are largely not people with autism. So we have to talk about it..everyone has to talk about it…and eventually, perhaps there will be overall better understanding which leads to acceptance. We hate what we fear, and we fear what we don’t understand.

  7. Susan Ford Keller September 18, 2011 at 9:25 am #

    People with autism who do not want anyone to advocate for them would do well to be reminded that “no man is an island.” Isn’t that what makes us human – how much empathy we have for another person? I may not have autism but many issues surrounding autism are universal. Being marginalized, being bullied – these are not the sole province of people with autism.

    What will it gain people with autism if only they can speak to and about autism? The whole notion points up the lack of true understanding of the reciprocal nature of neuro-diversity. As parents and teachers, we spend years trying to reach and understand our kids. Clearly, we must have failed along the way if adults with autism have no understanding of or empathy for us.

  8. Jamie September 18, 2011 at 10:36 am #

    Beautiful article. I agree with your sentiments, without trying (sometimes failing) but keep trying, we will never be a society that accepts all differences. Awareness and acceptance is so important to progress.

  9. Quiet Contemplation September 18, 2011 at 10:41 am #

    Well written. I have Asperger’s and am a mother of 2 boys with autism. I no longer spend very much time in forums mostly for those on the spectrum due to this sort of biased opinion that most of the members seem to hold. I don’t share it, at all. I get that we have been treated badly, bullied, oppressed, and all sorts of other horrible things, but we can’t cast aside a whole portion of the population just because of their neurological status. Neurology itself doesn’t make one an enemy or foe. It take all kinds to make the world go round and I’m happy to work with and alongside any NT in an effort to make this world easier for my sons to be in and navigate as adults.

  10. Shannon September 18, 2011 at 1:02 pm #

    Modified version of the comment I left at Rob’s site:

    Constructive conversation is possible, but it’s hard work, and requires listening to people who criticize us rather than lashing out at them defensively. So, it’s less about fighting over the word “autism,” and more about considering whether a specific grievance has merit. In those cases, we need to be very careful to speak for ourselves and our personal experience only. It doesn’t matter how much we know about being a parent or a self advocate (for those of us who fall into one category only), if the issue is that we don’t understand what it’s like to be on the other side.

    We’re working hard at constructive conversations at Thinking Person’s Guide to Autism: Starting tomorrow, we’re hosting a parent & self-advocate dialogue series between Robert Rummel-Hudson, Zoe of Illusion of Competence, and Ari Ne’eman. Hope you can participate. http://www.thinkingautismguide.com.

  11. Tami September 19, 2011 at 8:13 am #

    Shannon said well most of what I wanted to reply. One other thought.. We just need to remember to listen as carefully as we can to the verbal, written, behaviorally-communicated messages our loved ones on the spectrum are trying to convey. And they need to do the same. Many of them lack the ability to take another’s perspective – Theory of Mind – or have only acquired it with years of intense effort to grasp it by employing a cognitive, rather than intuitive, approach. They have a very hard time (often – trying to avoid too many generalizations) seeing that we make mistakes in trying to help/parent/teach/employ them not because we don’t “get” them, but because we only partially “get” them or because they are not clear themselves about what they want to tell us. Were any of us of any flavor of neurodiversity so very self-aware and clear to our parents in adolescence about who we were, what they could/should do to support us? None of us can get better at understanding and advocating for acceptance and accommodation if we don’t listen and cut everyone slack for their best efforts? Earlier posters used terms like “rude” “crazy” and one said “My point is, I don’t take these comments seriously. They don’t know what they’re saying, they can’t possibly understand us, our life as autism parents & the struggles/issues we face.” YOU HAVE TO TAKE THEM SERIOUSLY! you have to try to see the core message beneath the inappropriate expressions of their pain.

  12. Kassiane September 19, 2011 at 1:31 pm #

    But is it for me?

    When they’re saying that people like me need to act more normal, or that we need a cure, they aren’t advocating for me. They’re advocating against my stated wishes.

    There are a lot of non-autistic people around autism who are pretty much in my “I want to be like you when I grow up” category, but people who say things like that (or “we’re doing it for you” after they’ve been yelling at me for fighting the concrete battles I fight even though I don’t have the spoons…so their kids don’t have to in 5 years) are NOT on my side.

  13. R. Larkin Taylor-Parker September 19, 2011 at 7:55 pm #

    This calls for something more nuanced than the comment section will hold. My response is here:

    http://iamthethunder.tumblr.com/post/10421638782/parents-response-to-stuart-duncan

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