Autism Awareness Month Post Seven: Autism Speaks Replies To My Letter

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Three days ago, I sent a letter to Autism Speaks in regards to their 2014 financial statements, along with their co-founder’s statements about autism (https://marylandpoetblog.wordpress.com/2017/04/06/autism-awareness-month-post-three-an-open-letter-to-autism-speaks/). Thursday night, they responded with this:

Hi there,

Thanks for reaching out to Autism Speaks and sharing this feedback. I am happy to share some information to help address these concerns that you have. More than 75 percent of every dollar spent has funded programs and services in science, family services, awareness and advocacy, exceeding Better Business Bureau guidelines each year. The majority of this funding goes toward science, followed by our family services, awareness and advocacy efforts. As we continue to implement our new strategic plan, we are working toward increasing funding in every mission area so that a significant impact is made for everyone affected by autism. You can find all our financial information in our most recent annual report, which is available on our website: https://www.autismspeaks.org/about-us/annual-reports. We do have two people with autism serving on the national Board of Directors, and others are employed in a variety of positions at Autism Speaks. In addition, many of our advocates and partners who have autism play a key role in awareness efforts around the globe. You make a very important point about the diversity of the autism spectrum: it’s absolutely true that autism is a spectrum disorder with many subtypes that affect people in vastly different ways. Individuals with ASD like yourself do have unique talents and ways of thinking, and we want to ensure that people with autism have access to the supports and services they need to pursue their talents and goals. We recognize that autistic people have a wide range of talents, skills, and interests, and we try to highlight these in our videos, articles, and blog posts we publish. Here are some examples you may want to check out

It’s also true that children with autism become adults with autism, so we also work on a variety of initiatives focused on adult services: access to housing supports and services, attending college, finding meaningful employment, and more. For some examples, I would encourage you to visit the following pages

Overall, our goal as an organization is to promote solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support. We are looking to increase understanding and acceptance of autism spectrum disorder, and advance research into causes and better interventions for autism spectrum disorder and related conditions. For more information on this, as well as our organizational vision and goals for the next ten years, please visit https://www.autismspeaks.org/about-us.   I hope this helps. I would be happy to provide more information on what we are doing to support the autism community – just let me know.

Best wishes,

Emily Mulligan

Manager, Autism Response Team

Autism Speaks 85 Devonshire St., 9th Floor

Boston, MA 02109

Do you think this email addressed my concerns? Does it feel genuine, or a general response email to your average complaint? I want to hear your thoughts below!

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28 thoughts on “Autism Awareness Month Post Seven: Autism Speaks Replies To My Letter”

  1. I’m super new and super late to this conversation, but I’m an Autism Advocate and a Organizational Communications and Advocacy major and maybe I can shed a different perspective on this.

    From a PR perspective, you should know that this is a very genuine letter that probably took 15-20 minutes for this professional to write (crazy right?!) so they are taking your questions and concerns seriously. Something you should also know is that organizations like this have what we call “set language” which means exact words or phrases they use in all public replies or publications. So some of the words that you don’t like (and I don’t like either) are actually required language professionals in Autism Speaks have to use.

    I’m not defending their choice, but that can be limiting for PR professionals, especially in cases like this. A reason they do this is because 99.5% of the population does believe that autism is a disease like cancer that should be eradicated, and I’m with you guys – that’s totally wrong! I one of the few in my community and university that advocate that people with autism are an unused asset that we need! But the unfortunate thing is that most people don’t have experience with autism and have no clue, so organizations like Autism Speaks have to choose language that fits the mindset of the general public. They have to do this because if they just said “autism isn’t a disease, it can be a gift” then (wrongly) the general public won’t listen because they’d think the organization was crazy. So they choose language the public can relate to such as “we want to help these people and have better prevention programs” with the implications that it’s a ‘disease’ because otherwise the public won’t listen. Obviously those implications are wrong, everyone here knows that, but sometimes you have to do a little wrong by someone in order to do any good. I’m not saying it’s right, but it’s a problem most non-profit, advocacy organizations face.

    From an advocacy point of view, it’s important to understand the exact purpose of an advocacy group. In this case, their sole purpose is to promote solutions, increase understanding and acceptance of autism and promote research into the causes of autism and better forms of intervention; and unfortunately that’s it. If you want more from an organization, then this isn’t what you need. However, that doesn’t mean this organization isn’t doing some great things. In all my speeches and conversations, I recommend people visit Autism Speaks because I believe it does an excellent job at helping people who know absolutely nothing about autism begin to get it.

    I know it’s frustrating guys, I feel it too. Keep your heads high and know there’s at least one person out there rooting for you!

    Liked by 1 person

  2. Devereaux, you are an amazing thinker, writer, analyzer, and person. You have tons of empathy, and tons of courage and strength as well. How can I tell? Because you are 100% correct in everything you say, and you said it in a logical and professional way that could not be disputed. So, they resorted to generalizations, evasiveness, and double talk. You could have very easily really hammered them personally, as if I was Autistic I would be offended at any charity, person or system that advertises those with Autism as being defective and needing some cure.

    They think they are speaking for most autistic persons, but I can tell you they are not speaking for our two Autistic sons and us as parents. We now love our children for who they are. We see so much great in them regardless of any isssue. We were duped early on by such negative talk about Autism, and pressured to get our children services, but you know what? We finally saw through that. The medical and other supposedly helping entities seem to be often set up to make money off of those with Autism and other conditions.

    Yes, many of these persons or systems can pretend to help and care, and maybe some do really care. But, I can assure you most Autistic persons can see the great about themselves or want to see the great about themselves. It’s these other entities that are stirring up the pot, and trying to change what cannot be changed or should not be changed. The truth needs to be told, and I applaud devereaux for taking a stand. We have too by writing a book about our two sons and our love for them as they are, and how it is that all these systems should change, and not necessarily any Autistic.

    Each person with Autism is special. It should be they and/or the loving caregivers that do the speaking, and not these others that think they have all the answers, and do little good. We feel a big reason why these medical and charitable entities are making this an epidemic is so everyone goes to them for services and gives donations, respectively. Millions of dollars wasted yearly on treatments due to societal pressures, and wasted on negative advertising and negative studies, and huge salaries, and for what?

    I majored in Math, minored in Statistics. A study should not cost millions of dollars. Again, nothing changes after results come in anyway. It’s a moneymaker. Studies can be done very easily, effectively, and cheaply, and in short time if motivated to do that and not wanting to inflate costs and drag things out for financial gain. Parents feel worse when hear negative talk and feel pressure to change their special son or daughter, stereotypes become worse, no solutions result anyways from the data from the studies, and the salaries could have been used the help the Autistic directly in other needed ways.

    The bottom line is enough is enough. We hope more speak the truth, too Thank You devereaux and to Mr. Robinson too for standing up in what he believes in. Those with Aspergersvs and Autism are a lot wiser than many of those professionals think.

    Liked by 1 person

  3. I don’t really like this too much to be honest. The reason being is that their wording makes Autism sound like something that is absolutely horrible to have. The word Disorder rubs me the wrong way. For me, my autism is not a disorder but is simply the fact that my brain is wired differently. I don’t need a cure. Now, in the case of those on the other end of the spectrum, they do need help. All of us need help at some point. I felt like you got brushed off, honestly.

    Liked by 1 person

  4. Reblogged this on the silent wave and commented:
    A much-appreciated and extremely informative post from my awesome friend Devereaux (isn’t that the coolest name??) Frazier. He had written an extremely logical and reasonable letter to Autism Speaks ($peaks / A$), which I thought was an excellent and brave strategy.

    The disappointing (and fairly predictable) part was that although A$ did respond, they basically gave him the public relations (PR)-speak, saying how three-quarters of their budget goes to research, yada yada. Well no shit, Sherlocks; that’s (probably more than) half the problem! It’s not going toward efforts that would actually help autistic people! And then, of course, they give him lip service about the flimsy-ish “resources” on their website for autistic adults and whatnot.

    I wonder if anyone has been able to put any of these “resources” to the test to prove whether or not they’re actually anything productive and relevant to us, but I’m guessing most of us either wouldn’t waste our time with them, or getting any real help would probably be like pulling teeth.

    Regardless, though, this post is a great read, and a valiant effort made my Devereaux. Way to go, dear friend! They’re just dorks; you, on the other hand, did a mighty fine job 🙂 ❤

    Liked by 2 people

      1. Absolutely, spirit brother 💓. I’m just trying to figure out how someone (like the spokes-dork) can tap-dance like that. It’s like, “hello, A$, did y’all even *read* Devereaux’s letter??” I mean, you communicated a set of information, and they responded to an entirely different (imaginary, on their part!) set!

        It’d be funny if it weren’t so sad 💖🌷😘💜

        Like

  5. “Disorder,” “Unique,” “Interventions,” — I think they have a long ways to go. I agree with Jasper that their response was sort of a formula letter. And it scared me when they say that 75% of their money goes to “science.” What science? What research? And why? I haven’t read their annual report, but I suspect it would upset me further. I’m glad you wrote, and I’m glad they responded, if not in a way that’s satisfying.

    Liked by 2 people

  6. Without delving too deep into the operations of Autism Speaks, the response you received does not address your core concerns, namely that autism is not a disease but a way of being that allows a person to make valuable contributions to society and secondly, when you follow the money, too little actually goes toward delivery services, such as early identification and support for families.

    I have been the head of an organization very dependent of private supporters, and I get a sense that you got a fairly standard response to your specific concerns. All the more reason to push the points you are making.

    Liked by 4 people

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