Hi, my name is Stephanie, and today we are going to conclude our mini-series on
Autism Speaks. So, I will have parts 1 & 2 linked in the description below to this
little mini-series it is very imperative that you watch those before you watch
this. So, let's just get right into it. After what seems like the same-old,
same-old, 2015 comes and rocks the entire foundation of Autism Speaks. At the end
of 2015, Bob Wright steps down, Suzanne steps back,
Rob Ring, Chief of Science resigns, and Liz Feld, president of the organization
at the time, announces plans to leave. After these changes, Autism Speaks
adds Steven Shore and Valerie Paradiz, two openly autistic people, to the Board of
Directors. This is a huge step, as if, perhaps, they might just be listening to
the voices of actually autistic people. Former Autism Speaks member, John Elder
Robison, gives his thoughts on the change, saying, "It's possible that a new day is
about to dawn for the largest and most controversial autism organization. For
the first time, they have put actual autistic people in positions of power.
They may take more positive steps when the top management is replaced. Time will
tell. I certainly hope the organization can
change its focus to one that is more constructive and less demeaning to
autistics. I hope we've seen the last of the ugly missives like, "I Am Autism,"
Suzanne Wright's offensive 2013 editorials, and the suggestion that autistic people
are somehow missing. (We're not.) They've got a powerful PR machine. Maybe they can use
it to say the right things for a change. It's harder to raise money when there
are no villains and demons, but it can be done. Will they rise to this challenge or fall
back on the old ways? I'm not an insider, so I have no special knowledge, but I
have some concerns about the board and some big donors. In the past, a
significant amount of Autism Speaks' funding came from people with
anti-vaccine agendas and followers of fringe or discredited science.
How much influence do those people hold today? I don't know, but it worries me in
light of their history. It also concerns me that the volunteer base is so heavily
dominated by parents. That's really what the group is: autism parents. Can they
embrace actual autistics to truly begin to speak for the community? There are a
few autistic volunteers there now and that's a good sign." And that's something
that I think was definitely perfectly put into words. That Autism Speaks is
actually about the parents and the families of the autistic people, not the
autistic people themselves, while marketing themselves as being for the
autistic. As for Stephen Shore, in an interview, he seemed pretty optimistic
about his appointment to the board at Autism Speaks. He says, "After ten years of
telling us it's time to listen, Autism Speaks now visibly listening to people
on the autism spectrum is a very good sign.
With the stepping down of Bob Wright as board chair, Liz Feld as president, and
other resignations, Autism Speaks is in a period of transition. Like with music,
transitions in organization and people is where the most potential for growth
often occurs. I look forward to meeting the challenge of working with Autism
Speaks to improve lives of all people on the autism spectrum." After ending 2015
with a lot of transition, 2016 continues further into change. More change in
leadership occurs, with Angela Geiger becoming the new president and CEO of
Autism Speaks. Along with this comes a change in the mission statement, which
gets rid of cure language for the first time. It now reads, "Autism Speaks is
dedicated to promoting solutions across the spectrum and throughout the lifespan
for the needs of individuals with autism and their families through advocacy and
support; increasing understanding and acceptance of autism spectrum disorder;
and advancing research into causes and better interventions for autism spectrum
disorder and related conditions. Autism Speaks enhances lives today and is
accelerating a spectrum of solutions for tomorrow." While this sounds like a
positive step to many, Max Sparrow states their concern in a blog post, saying,
"You want to study the causes of autism? You're dedicated to promoting solutions
related to finding the causes of autism? If you find out what causes autism, what
solution are you planning to implement? Why do I keep hearing the word 'final'
every time I think about your solutions for the causes of autism? This is why I
do not trust your shiny new mission statement. This is every bit as much
entrenched in the cure mentality as your old mission statement. This is a piercing
dog whistle for prenatal testing and abortion. This is why I read your new
mission statement and I still see a huge organization draining all the money from
local communities. Money that could have helped us, our families, our schools, our
vocational aspirations, our future and using that money to research how to kill
us before we are born. This is why I say you have not changed a darn thing. You
have slapped a fresh coat of paint on the same terrifying eugenics agenda
you've always had, Autism Speaks. You only took the word 'cure' out of your mission
statement. You did not remove the hatred of our existence. You might have fooled
some people, but you aren't fooling me." When asked about his thoughts on the
change of the mission statement, John Elder Robison said, "Well, I think it's a
good step. It's a step that was asked of them five years ago, and I think they
need to do a lot more. Those are the words, but who directs the action?" Angela
Geiger speaks about Autism Speaks in an interview with Denver Frederick and says
they started realizing autism is more than one solid thing: a spectrum, and
started listening to the actual voices of autism. She emphasizes that it's not
autism, it's autisms. The rest of what she says seems to me
that her focus is about the organization itself, not necessarily autism, but I
guess perhaps the president and CEO should be focused on those things, as it
is their job. She notes that Autism Speaks was
running like a start-up without long-term planning because they thought
they would get together get a cure and go, and that's not reality.
In addition, Suzanne Wright loses her battle with pancreatic cancer and passes
away. It looks like Autism Speaks may be making a revolutionary turnaround, but
then 2017 strikes with accusations of Autism Speaks having ties to a neo-nazi
group called Soldiers of Odin in Canada. This stems from yet another one of those
Autism Speaks walks. The group was going to participate in the Autism Speaks walk.
The Soldiers of Odin are accused of being a white supremacist, neo-nazi group.
After public outcry, it seems they were taken off of the website as a
participant after five days. Again, I honestly think this is simply the
mistake of the coordinator in not researching properly. To their credit, on
the surface, they just look like a biker group. Considering Autism Speaks took
them off the page, I highly doubt they're on good terms. In
2018, Autism Speaks acknowledges that maybe not meeting the criteria for being
autistic isn't the only optimal outcome in a blog post titled, Autism and Optimal
Outcomes - Is it time to refine our thinking? The article says, "Recently,
mental health researchers Elizabeth Costello and Barbara Maughan proposed
redefining optimal outcome as the best possible outcome based on each child's
personal characteristics and available supports. We find this as a much more
suitable concept for developing autism services and setting goals for each
child, teen, or adult. The focus is not on reaching certain milestones related to
their typical peers. Rather, it's on progress against personal goals such as
social and community engagement and any emotional, cognitive, moral, or physical
aspirations. Most importantly, we need to include the person with autism and his
or her family in the conversation on identifying important and meaningful
outcomes. Although it is kind of annoying that it took until 2018 for them to propose
an idea that many had been advocating for a long time,
it is good to see this kind of idea put on Autism Speaks and really in the realm
of autism research in general. Now we're in current year, 2019. Their current
GuideStar rating is okay, but only has two stars on how they handle their
finances. This remains a place where Autism Speaks can vastly improve. Now, a
little side note here, I am not able to find Valerie Paradiz on the Board of
Directors page for Autism Speaks, which is weird. I don't see any news
where she stepped down. I do see an article of hers that is still hosted on
the site. So, I don't really know what's going on there. I don't know if that's
just an oversight. Maybe they didn't get a bio from her or something, but it's kind
of weird that she's not there. I just thought that was important to note as of
my research stage I've yet to see her on the Board of Directors page. I think that,
to date, Autism Speaks is trying to actually listen to the voices of autism
and embrace them. The problem is that they are trying to turn a very large
vessel that has been fueled by fear and by the sorrow of parents who have been
convinced that their child has been swallowed up by this evil thing called
autism. They have gotten rid of the cure language, but you can tell that it is
still difficult for them to see autism as something other than something bad
that happened to the child. I do have hope for Autism Speaks. I mean, it does
seem like they are trying to do good things and they've definitely taken steps
to include actually autistic people in meaningful ways as being part of the
Board of Directors. I also did take a look at their strategic plans for the
past and the ones from now until 2020, and there is a clear shift away from
creating a 'sense of urgency,' AKA fear-mongering, so
that's good. But we really are in a place of 'time will tell.' At this point, for the
parents who have already been sold that idea that, you know, this is an awful,
unforeseen, unprovoked medical disaster that has happened to you and your family,
or who have been convinced that your child has been stolen away into the
darkness, or that you have somehow lost them,
I want to tell you right now that you have not lost your child. Your child is
still right here. Autistic people are ... we're right here. We're not gone.
We're not missing. We're not swallowed by some evil thing
called autism. It's just a part of who we are and how we think. It's just part of
how we see the world. Some of us cannot say out loud with our mouth that we love
you. Some of us cannot without, you know, 'prompting' kiss you and hug you, but I
want you to know that we do love you. So many autistics have trouble saying those
words, even though they do speak, because they just thought you knew. They just
thought you inherently understood how much they love you. Why would they have
to put a word to it? So understand that even if your child or loved one cannot
say the words out loud, 'I love you,' they do love you and they are there. They're
not missing. They're not in the darkness. They are right before you. You do not
have to fix them. You do not have to adjust them. You do not have to hope and
pray that someday they'll be magically different. They are who they are, and I
highly encourage you to start taking steps toward learning who they are
instead of trying to change who they are. Instead of trying to make their
behaviors pleasing to you or pleasing to the public. Find out who your child is. To
Autism Speaks, I encourage you to continue to make positive changes. I
really do appreciate your attempts at including the autistic community. With
media being so prevalent, why not reach out to creators like us, who are your
everyday person, supposedly that lifespan that you want to reach. We have a voice
and we are willing to talk. We want to give you insight that some person who
doesn't think like we do cannot give you. I know there will probably still be
flaws. I mean, as John Elder Robison pointed out, there's probably some people
with power and money and certain agendas lurking and lingering about, but I
hope that those people and their dirty money will be weeded out by those people
who truly do want to help those who are on the spectrum. We are not a disease to
be eradicated. If you've made it this far into the video, thank you so much for
being here, for making it through this series. From this point onward, I'm just
going to be sharing my personal opinions, so if you're not interested in that, feel
free to click off. If you are interested in that, feel free to stick around. So, I
think most of the problem with Autism Speaks really lies in their co-founders
and the people who backed them with money who have non-scientifically
supported agendas, as well as their budgeting issues. I personally wouldn't
give my money to this organization. They push the government so hard to give
support and money and, you know, programs and all these things to autistic people
and their families, and while that's great,
I feel like maybe they should put their own money where their mouth is because
they haven't even managed to give a double-digit percentage of their total
budget to actually providing meaningful help to autistics and their families.
There are local charities that do so much more with much, much less in their
communities than Autism Speaks does. However, Autism Speaks is a big name and
so people will give to that because they know that, you know, oh, it's been around,
blah, blah, blah, must be good; let's just give our money to that. With them
already being this well-known organization, I really think they could
spare some of that money they raise to actually directly helping and supporting
families more than their, maybe, their toolkits and some of their paper stuff
that they put out that are supposed to be helpful. As for funding research into
autism, I don't think that's wrong. I think that it's great if you can learn
more about autism about how it affects people. Honestly, for many people who are
more level three, more considered 'low functioning,' (this whole functioning label
thing), if there was a way to alleviate some of the struggles that they run into
in such a way that it's much more difficult, I'm sure that that would be a
nice option. If it could help with many of these comorbid conditions that, there
are a plethora of very difficult conditions that tend to come along with
autism, that kind of research could be very valuable in helping the autistic
community. However, I don't know enough about science to know if that would be
possible. With autism being a different wiring of the brain, would it be even
possible for something to cause someone to go from level 3 autism to level 2
autism or level 1 autism? Is that possible? Would they be giving up part of
who they are to be less restricted by behaviors and more capable of casual
conversation? I'm worried about prenatal screenings. Personally, I highly doubt
that they would be used as a tool to help people be more prepared for having
an autistic child. I really feel like they would more use that as an attempt
to prevent neuro-diverse children from entering this world at all. I also think
it's fair to keep a good eye on anyone who is still a part of Autism Speaks
that was there before 2016. The reason I say that is that these people were
happily going along with the Wright's agenda at the time. So, to me,
that makes them a little suspicious. They may have been a part of moving that
particular agenda, and there are two specific individuals that I wouldn't be
sad if they got replaced by someone who was a little more interested in the new
changes coming to Autism Speaks. Now, I will be going into different videos on
specific things and that'll probably be one of them. Another very obvious way to
improve is to offer a better and more thorough training to your walk event
managers to avoid appearing to support some seriously awful groups, like the
Judge Rotenberg Center, or people who have ties to white supremacy. Other than
that, I do think a lot of the hate launched at Autism Speaks is deserved
for the pre-2016 group. Time is going to tell whether or not the reputation that
Autism Speaks has because of its founding all the way up to 2016 is
deserved or not. I think that they are trying to make positive changes, but they
really, really need to stay the course. If they step back into old patterns,
we are waiting and we are watching and we will call you out. You don't get to
claim to speak for autism and make money off of well-meaning and ignorant people
without us checking you. Either way, thank you so, so much for watching this video
series. I hope that you enjoyed it. I hope that you found it informative, and I hope
that it gave you the information necessary for you to make an informed
decision and opinion concerning Autism Speaks. Now, there are a lot of things
that I ran into that I would like to make separate videos on, whether it is
about things that happened, or are happening with Autism Speaks, as well as
some offshoot things. In fact, an organization I discovered that makes me
angrier then Autism Speaks does that claims to help autistic people, other
than the Judge Rotenberg Center, because that place makes me extremely angry, but
one that I don't think is given enough spotlight as being a not the greatest
organization, just because I had never ever heard of them
and they don't seem to have a whole lot of press. So, just some things that I'd
like to look into, maybe some people on the board we might want to keep our eyes
on in the future, etc. Just some things to keep up on the autism world and, and some
more further research-y thingamajigs that I just, we don't need to go into in
this series. So, I hope that you enjoyed it. I hope you'll be looking forward to
my normal videos as well as some of my more research, expose, informative videos,
yeah, in the future. So, if you enjoy my kind of content, I highly suggest that
you hit that subscribe button. I try to upload every Thursday at 4:00 p.m.
Central Standard Time to this channel with autism related content. If you
enjoyed this video, of course, give it a like, that would be great.
And I hope that you're having a wonderful week and see me in my next
video. Bye!