Tag Archives: autistic adults

how Autism Speaks spreads awareness: it’s not what you think

how Autism Speaks spreads awareness - it's not what you think*You can listen to a recording of this post, just scroll to the end.

Autism Awareness Month needs some work. A large portion of awareness is propelled by Autism Speaks, but what is Autism Speaks saying about autism and what is their awareness doing? I thought I’d give you a glimpse at how Autism Awareness needs to change to Autism Acceptance, a concept that isn’t new, nor initiated by me. Autistic adults have been trying to make a change for years.

So, since Autism Speaks seems to be the organization we see plastered everywhere when we think of autism, let’s take a look at what they believe, and what their “awareness” is composed of.

Autism Speaks is hailed as wonderful by a multitude of autism parents. It’s one of the largest organizations that attaches its name to autism, and because autism parents think this establishment is going to find answers for their children, much of the world views Autism Speaks positively.

Individuals who stand on the sidelines give money to Autism Speaks because they see an organization that’s helping families who live with autism. But there are a few problems with Autism Speaks. It’s taken me a couple years to make such bold comments on this organization because I really wanted to find out the whole truth.

I’ve heard enough now, and have formed my opinions.

The first red flag that’s been raised is, Autism Speaks doesn’t listen to autistic adults. Autistic adults have written innumerable letters and contacted Autism Speaks countless times asking them to change what they tell the world about autism.

In the 2014 Joint Letter to the Sponsors of Autism Speaks, the Autistic Self-Advocacy Network (as well as over a dozen other mental health and disability groups) writes, “Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership…The slogan of the disability rights movement has long been, ‘Nothing About Us, Without Us.’ Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.”

Autistic adults aren’t going in with guns blazing, they’ve tried without success to communicate with Autism Speaks in a cordial manner. In the 2014 Joint Letter to the Sponsors of Autism Speaks, the Autistic Self-Advocacy Network also writes, “It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.” If this isn’t making great efforts to work together in an agreeable way, I don’t know what is.

Second, Autism Speaks highlighted the Judge Rotenberg Center (JRC) in their 2013 Walk Now for Autism Speaks Resource Fair. The JRC abuses autistic people with shock therapy, isolation, and much more. Here’s an excellent article written by Jess at A Diary of a Mom on the heinous acts the JRC inflicts upon the disabled, Judge Rotenberg Center.

The third issue is, Autism Speaks focuses on preventing and curing autism. Only 4% of Autism Speaks budget goes to “family support”, that “family support” being the portion individuals who donate think most of their money is going to. Whereas, 44% goes to research. Autism Self-Advocacy Network says, “Most of the research that Autism Speaks funds is devoted to causation and ‘prevention,’ including the prospect of prenatal testing.”

Autistic adults don’t want to be cured, they LIKE their autism. They tell us autism is part of who they are. 

My son, Jeremiah, would not be who he is if he didn’t have autism. Yes, certain aspects of his personality would be the same, for example, he’s really well behaved and doesn’t get in trouble doing typical “kid” stuff. But so much of who he is directly correlates with autism.

I completely support wanting to help the autistic person deal with things that are difficult for them, but to eradicate autism altogether, I’ve come to believe isn’t the right thing to do. Autism gives us a view into a world we otherwise would never witness, and so much of it is special and beautiful.

When autistic people say they don’t want to be cured I think this is a powerful statement that needs to be heard. I think so much of what we think we know about autism is perspective and who influences that perspective.

And prenatal testing? We just opened whole new &%$# load of problems with these words. What does prenatal testing do? Does it prepare the parents for what’s ahead, give them a heads up? Or does it more likely give the option of terminating pregnancies where the child has autism? The latter is far more likely and I have very strong opinions on the matter which I won’t discuss here.
autism awareness month must inlcude the autistic adult

Another problem I have with Autism Speaks is how they refer to our children who have autism. The Autism Self-Advocacy Network says,

“Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as ‘tragic burdens on our families and society.’ In its advertising, Autism Speaks has compared being autistic to ‘being kidnapped, dying of a natural disaster, and having a fatal disease.'”

My son has what Autism Speaks would consider “severe autism,” he’s nonverbal, his sensory processing issues overwhelm him at times, and he’s the child you might find having a meltdown on any given day. Yet, I DON’T feel any of these statements are true of my son or our family. Neither do many autistic individuals.

Fifth, the CEO of Autism Speaks doesn’t even understand the autistic individual. In an address Suzanne Wright recently made to the Pope, she said, “Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our loved ones.” Do you know how autistic people feel about eye contact? Suzanne obviously doesn’t. You should hear what they say. Many of them say it’s actually painful.

Sixth, the support Autism Speaks provides to families only makes it possible for those families to get their child in ABA therapy, and much of their financial support doesn’t stay local. ABA doesn’t focus on the child’s positive attributes, it focuses on removing the negatives. It doesn’t focus on WHY the child has certain behaviors. Many autistic adults were harmed by ABA, and for many it caused them to have PTSD and Obsessive Compulsive Disorder.

The main problem I have with Autism Speaks is it promotes a very negative view of autism. I shared some of their propaganda above. They also show you the most severe autism, a child who is overweight, one who falls on the floor, flailing in the midst of a meltdown. The biggest problem I have with their “awareness” is they don’t tell you WHY the person is behaving this way. Mostly because they don’t really know and don’t understand.

Autism Speaks only focuses on the overstressed parent who doesn’t know what to do and that parent only sees the negatives in their child’s autism. They show the difficulties, but they don’t show the WHY or the good.

As I said earlier, Autism Speaks is the voice the world hears on autism. What is it saying? Are their words positive? Are they uplifting? Do they make people feel good about autism or think it’s a horrible disease that needs to be eradicated? This is awareness, but the wrong kind of awareness.

As countless of autistic adults have said, it needs to be Autism Acceptance Month. To accept autism, we need to know WHY, not simply what is, or what certain cases look like on the Spectrum.

It’s a whole picture, a whole person that Autism Speaks is ignoring. They definitely aren’t accepting autism. 

Make sure and come back for follow-up posts on Autism Acceptance, one will specifically focus on WHY autistic people do what they do, this is to bring understanding, but also in larger part, acceptance.

You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this may need to be done on the web version. You can also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

it’s in a word: autistic vs. has autism

its in a word autistic vs has autism
You may follow my blog and wonder why I say “(insert name) is autistic,” when you feel strongly it should be, “(insert name) has autism.” The second is described as being person-first language. I’ve had discussions with parents and grandparents who are strong proponents of the person-first language. I understand this. Not wanting your child or grandchild to be defined by one aspect of their personhood is admirable, but when we really consider what saying, “(insert name) is autistic” means, we can see that it’s only a part of who they are, not the whole.

When I began this journey, I solely used the phrase “has autism,” I felt it was the respectful way to address someone on the spectrum, I felt my son shouldn’t be called autistic. I listened and was part of the discussions about person-first language. I believed saying, has autism was much more considerate than saying they were autistic.

Then something changed. I started listening to the voices of autistic adults. Those adults who have been there, done that, lived with autism, dealt with onlookers, naysayers, and abuse, say they want to be called autistic and call themselves autistic. I’m not saying this is true of every autistic adult, however, there are many who’ve voiced their opinion on the word. This is what they want.

I feel it’s important to look at others who’ve forged the road ahead of us. It’s especially true when we don’t have the disABILITY, but are trying to raise a child who does. So, I began to really consider what these autistic adults were saying. Why did they feel so strongly about “autistic” versus “have autism”? What was their reasoning? And, what should I do about it?

Autistic adults make the point that you can’t separate autism from the person, thus the person is autistic, they don’t simply have autism. Jess at A Diary of a Mom writes, “John Robison points out in his book Be Different, when we talk about people having something, it’s something bad. He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, ‘He has intelligence?” or “Wow, she really has giftedness and talentedness?’”

About the word, autistic, that many feel grates at their ears and defines their children, Jess adds a great point. She says, “Calling a person Autistic doesn’t mean that’s all they are.” If you say someone is intelligent, don’t they also have the ability to be generous, thoughtful, or artistic?

I would never say that autistic is all my son, Jeremiah, is. Absolutely not. But I can’t deny that autism is a big part of who he is. I want to say, but don’t have the ability to, that he would be very different if it wasn’t for his autism. But, I can’t know can I? I can’t know because he’s autistic. That autism makes up so much of who he is, how he functions, how he responds to me, what he does, how he feels. It’s in every part of him. And it’s not bad. It’s really beautiful.

Side note: I found this awesome quote by Walk Down Autism Lane on Pinterest that speaks my heart,

“They said he was off in his own little world…But, he held my hand and took me with him. It was beautiful.”

I quote Jess because she’s had tremendous more opportunities than I to speak with autistic adults. She also says about the matter, “So just as one can be described as Jewish or Catholic without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too.” In, Why I Dislike Person-First Language, Jim Sinclair, an autistic adult, says something very profound, “It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”
Jim Sinclair quote

Sinclair explains how autism is essential to who he is: “Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.”

For me, I don’t stand on either autistic or has autism as being the end-all. I don’t like division in the autism community, just as I don’t like it in the adoption community. I use both references interchangeably, but find myself using autistic more often. I’m not offended when someone says my son has autism or when they refer to their child in the same way. We each have our reasoning for using certain terminology.

I often see that those who use the term “has autism” as those who want to take autism away from their child. There are autistic adults who balk at this, yet I know that when your child has severe needs you only want them to feel better, to not struggle in society, not be looked down upon, not battle sensory issues. We need to look at the wonderful attributes of our children no matter where they fall on the spectrum, they are humans with dignity.

We need to respect each other and where we each come from, what autism we’re each living with.

So what do you do? As I’ve said, each person will have their opinion of how they want to be referred to, but many adults prefer the term “autistic.” Many parents and grandparents prefer you say their child “has autism.” I would recommend going with what you’re comfortable with or what the person living with autism has requested.

This post is only meant to share with you why I use the terminology I do, so I can refer others here when I don’t have a short answer. It’s also meant to educate and share a wider view, one that comes from those who’ve walked our child’s path already.

The quotes from Jess were taken from her post Person First on A Diary of a Mom, which I recommend reading in it’s full context.

*Please see the CONTENTS page for links to more posts on autism, adoption, and foster care.


You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this can be done on the web version. You can also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.