Does Autism Speaks Really Speak for me?

I’m going to talk about a subject that many Autism Speaks supporters may hate me for by the time this is done. Now you’re probably wondering why a person like me would have such strong feelings against well known organization that is very active with getting awareness about Autism out there. Tell me something people, of all the time you’ve followed the organization for those who do how often do you actually see something on their page posted by someone on the higher functioning end of the spectrum? If your answer is “almost never” or it consists of someone named “Kerry Margo” then you’re right on the money. Before I continue allow me to explain who Kerry Margo is.

Kerry Margo is a young person around my age on the higher end of the spectrum who got his rise to fame through a video blog he did where he discussed many aspects of Autism and what it was like to live with them and how he got through many issues in his life. Kerry Margo has now become somewhat of a spokesperson for Autism Speaks and now works at the organization as a Social Marketing Coordinator. Kerry Margo has become somewhat of a poster boy for Autism Speaks and while I applaud his efforts there’s just one tiny little problem which brings us to the meat of this tonight’s entry, KERRY MARGO ISN’T THE FACE OF AUTISM NOR SHOULD HE BE TREATED AS SUCH!!!!!!!! Now when I first started talking about my experiences I stated that everyone on the spectrum is like a snowflake in the sense that no one person on the spectrum is the same nor should they ever be treated as such. Though similar developmental anomalies exist across the spectrum it should be noted that every person on the spectrum has their own unique experiences, struggles, and lifestyles.

Now that I’ve gotten that really tedious intro out of the way we can now get to what really matters and that’s why my views aren’t exactly in line with that of Autism Speaks. Now those who visit the page will know that a bulk of it is them telling stories of children on the spectrum as well as parents talking about how much they love their Autistic child and that their child is the greatest thing to happen to them. Occasionally on the Facebook page you will have a bunch of shitty parents being really negative about their situation and how their child feels like a burden and I’ve even engaged in Facebook fights with such people. Don’t get me wrong, I’m not saying you don’t have the right to feel exhausted and worn out as it is an essential part of being human. I also agree that caring for a child on the spectrum can be the equivalent of attempting to slay a dragon with a stick some days, I brought hell on earth some days and scorched my parent’s sanity 90% of the time but reading some of that negativity can be unnerving because it’s always written with a sense of hopelessness and the perception that they’ve been given a death sentence in the form of their child.
Now before I get off topic again allow me to reiterate the first question I asked in regarding to Autism Speaks, how often do you actually see something on their page posted by someone on the higher functioning end of the spectrum? If your answer is “almost never” or it consists of someone named “Kerry Margo” then you’re still on the right on the money. I dislike Autism Speaks because though it’s a great resource for parents as far as raising their child goes, it’s not a very reliable resource for a higher functioning adult on the spectrum trying to find their way in the jungle known as our society. In my last post I delivered all of you my women/dating woes on a delightful silver platter though there is more to the story that ties into this issue. When I realized that the advice I was getting from other people just wasn’t suiting me I ventured on to the internet and the resources for adults on the spectrum were greatly lacking. Most of the stories pertaining to adults on the spectrum on the Autism speaks page were either about lower functioning adults on the spectrum whose parents spoke for them or they involved Kerry Margo.
In that moment I realized that I was just a minority in a way I never thought I was. Higher functioning adults on the spectrum who were self aware are an incredibly small number and to make matters worse you don’t see many of them on Autism Speaks or other major Autism organizations. Most of them reside on small corners of the internet where they form communities for themselves and share their experiences. Now I must ask the infamous question, why the hell is it called Autism Speaks when there is a complete lack of higher functioning adults sharing their experiences or included as a part of the organization? I seldom see any efforts by the organization to reach out to higher functioning adults on the spectrum and parents on that page seek each other to understand why their child does the things they do yet they’re completely ignoring a treasure trove known as the higher functioning community. I’ll admit there are some people on the spectrum who are very introverted and want absolutely nothing to do with a bunch of people asking them questions about the disorder but there are those (like me and many others) who have a story to tell and can answer more questions than you could ever realize.

Now they say people on the spectrum often take things literally and some may think that this little rant maybe just a misunderstanding and that I’ve completely misinterpreted the message of the organization. If anyone ever has such thoughts then they’re sadly mistaken. I call it how it is, the slogan of the organization is “Autism speaks, now it’s time to listen”. It has a nice ring to it, it does but until the organization actually attempts to reach out to higher functioning people on the spectrum those who visit the site just aren’t getting the full story. The name of the organization can be very misleading for those who truly seek a different perspective. I know that speaking doesn’t necessarily mean talking and I know that actions speak louder than words. I also know that just being and existing and living life are ways to speak however, Autism Speaks does not tell the full story and there are a culmination of stories that you can get by speaking with higher functioning adults on the spectrum who understand their disability. Though we’re small in number, we can provide a plethora of knowledge that can solve a decent amount of mysteries.
I disagree with the organization and the naming because though their intentions are good I feel like they’re doing all the talking for us and rarely have there been high functioning people on their telling their stories. Kerry Margo is a great addition to the Autism Speaks but sadly he is not the full story and there are a plethora of stories waiting to be told. While some of us are willing to come to you with our stories, others of us have to be found and you need to accept the higher functioning community with open arms. I’m hoping Kerry Margo’s addition to the Autism Speaks team will mean a change in the face of the organization and I hope he will help the team seek out other higher functioning adults and maybe one day Autism can truly speak in the way it was meant to. Well that’s all for now, stay classy people.

3 thoughts on “Does Autism Speaks Really Speak for me?

  1. Pingback: Does Autism Speaks Really Speak for me? #2: Obviously Not and Today they Gave Me a New Reason Why…. |

  2. I’m not really a fan of functioning labels, and I know many other autistic individuals are the same. I’m afraid you share the same view as NTs do about people with “low functioning” autism. It just isn’t true. There are blogs run by people who are completely unable to speak coherently and who fit some of the other stereotypes for “low functioning” autism. These people are not stupid. Most of the time, the problem is with communication and control over one’s physical body rather than any sort of deficit in thinking. Don’t fall into the trap as judging people as being entirely not like you, when you don’t know what’s going on in their own heads. Of course, the issue often is that not even their own parents have any idea what’s going on in their heads, and they think their kids are severely intellectually challenged, when that’s often not the case.

    • I wrote this in my early days before realizing this. As you can tell by the date, this blog post is almost six years old. I have never had anything against Autistics that aren’t like me. I think my issue at the time was that people only looked at one part of the spectrum, and to them that was Autism. Some of my frustrations at the time came from not being adequately represented because groups like Autism Speaks over sensationalized certain portions of the spectrum over others in order to scare people in to funding them for their own malicious gains. As for functioning labels, I mean no disrespect by them. It was lack of better words at the time. The spectrum is extremely complicated, and there is no correct way to describe something with such complexity.

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