Hi, I’m Amythest, and welcome to, ‘Ask an Autistic’
[Opening music: “I want to write a song, to shine a light. Be the change we want, set things right. We’ve been waiting in the dark for so long."]
In todays episode I’m going to be talking about, what it means to be an ally to the
autistic community. People ask, how can I be a good ally to autistic people?
Remember that autistic people should
be leading the conversation about autism and our lives.
The first thing to know about being an ally and about being a good ally is that when you
are an ally, you are standing with, and alongside the group that you are supporting; so in this
case autistic people. When you’re an ally, you are standing with, or even behind autistic
people, supporting them, and encouraging them, being there for your autistic family members
and friends. But the important thing to remember, and this seems really simply but people tend
to forget, is that autistic people should be leading the discussions about autism and
that if you are an allistic ally, you should be deferring to autistic people in discussion.
And it is the voices of autistic people that
should carry the most weight and get the most consideration in discussions about autism
and disability and about the lives of autistic people. Because they are our lives and, and
we are the ones who are autistic and so, it seems really simple to say it but sometimes
people can get caught up; you have a family member or a friend who’s autistic; you want
to further the cause in acceptance and awareness and that’s great, but just keep in mind
that in your enthusiasm you shouldn’t be speaking over autistic people or taking the
lead. Because for a long time, all kinds of people with disabilities, autistic people
included, have been kind of pushed aside, or underestimated. And disabled people can
tend to get the, ‘we know what’s best for you’ treatment from non-disabled people.
Hi Kitty.
Hi Kitty,
The second way to be an ally to autistic people is to actually read and listen to the voices
and writings of autistic people. Again, it sounds simple, but some people aren’t even
aware that there is a large and very diverse collection of writings and articles and blogs
by autistic people. You know, autistic teenagers and adults. And it is such a great resource,
especially for the parents of autistic children because, who knows better what your child
is going through than people with autism. While every autistic person is different,
there are things that all autistic people have trouble with, and there are challenges
and disabilities that autistic adults have already encountered and they have some wisdom,
and tips and tricks to impart to people who are willing to listen.
A big part of this is something called presuming competence. When I support ideas about autism
acceptance and neurodiversity, and when I speak out about organizations like autism
speaks, these things shouldn’t be controversial at this point in our society, but they are,
and sometimes I will get messages from parents who, they, they just don’t know, and I might
be actually their first encounter with the ideas of neurodiversity and autism acceptance
or I may not be and they may have kind of a bad taste in their mouth because they are
just misinformed about who it is that supports autism acceptance. So I get some comments
like, “Oh, well, of course you’re ‘high-functioning’, you’re just quirky, of course you don’t
want a cure for autism. Or course you don’t like autism speaks, but you know you’re
not like my child. And you’re not “low-functioning”, we need to find a cure for the “low-functioning”
autistics.” And then when I reply I try to be as gentle but as firm as possible and
I say, ‘Actually, it’s not just the ‘high-functioning’ autistic, you know not just the ‘aspies’
out there who believe in acceptance and in neurodiversity, and in letting autistic people
lead the conversation about autism.” And then I, I provide links because there are
many, many amazing non-verbal autism advocates and I will link to all these wonderful people
below, but they are the, the ‘severely’ autistic people that, um, less than great,
autistic allies tend to pull out in discussions about autism acceptance and, you know, anti-cure/pro-cure.
So if and when these people who contact me can get over their initial defensiveness and
open their minds a little and if they actually read these writings, I get messages back that
say ‘I just, I never knew,’ because the rhetoric that you hear is that of complete
negativity and that autistic people are locked inside themselves, they don’t know what’s
going on around them, that autistic people who don’t speak with their mouthparts will
never communicate. When now we’re realizing through AAC and sign language and text-to-speech
and the rapid prompting method that that’s simply not true. But to be autistic and to
be nonverbal, you might have speech apraxia or you might be unable to put your thoughts
into vocal words, but every autistic person has a rich inner world of thoughts, experiences,
memories. And no matter what it looks like to neurotypical people from the outside, every
autistic person is a person. They can see what people are saying about them, see what’s
going on around them, and so it’s so important to presume competence. Because as the parents
of an autistic child, or as just a person out there in the world, you’ve been told
things about autistic people that just aren’t accurate. Because these are things that
were observed by and then written and spoken and spread by non autistic people who have
no idea what it’s like to be autistic, and who never actually went to ask autistic people
what it is like to be autistic. And one of these wrong ideas is that a very high percentage
of people with ‘classical autism’ have intellectual disabilities as well, so they
are unaware of the world around them and they can never learn.
So now we’re realizing that the way we’ve
have intellectual disabilities, and that number may become even lower as we create more accurate
testing methods) So now we’re realizing that the way we’ve
been testing autistic people for intelligence, whatever that is, is wrong, because we learn
in a different and express in a different way the teaching too us and the testing us
and the methods of communications have to be different and have to be adapted but when
they are, and if you, if you find the method of alternative communication that works for
you or for your autistic child, teaching and hard work on behalf of the part of the autistic
people, there can be communication. It might not be verbal communication with the mouthparts
but autistic people more and more with methods, that are being developed like the rapid prompting
method, are finally being able to express themselves and families are amazed. And then
there’s some, some sadness to because if all these autistic people are ‘in there’
and they just need to find their voice and find a way to communicate. How many more autistic
people have been written off have been treated poorly, as even less than human, because of
how they look to neurotypical outsiders. So I got a little sidetracked there, but the
point is, a very important part of being an ally to the autistic community is to presume
competence.
Through presuming competence when you are
interacting with an autistic person, or reading the writings of an autistic person who may
be classified as ‘low-functioning’ or nonverbal, you can open yourself up to a whole
other world. The voices and experiences and stories of autistic people who, most people
have never heard, because of this very negative rhetoric of fear and tragedy, and that autistic
people are burdens. And then the lie, that if you can’t speaking with your mouth you
have nothing to say.
My third and last tip for being an ally, a
truly good ally, to the autistic community is to
be prepared to change.
And I know, it takes humility, and you’ve got to humble yourself sometimes, but when
our emotions get in the way, when we feel defensiveness or we want to defend ourselves,
or you know, you might be an ABA therapist and you want to defend your profession, or
you’re um you’re the parent of an autistic child. These are all legitimate feelings.
And it’s important to remember you feelings are valid, but your feelings can also get
in the way of the truth. People sometimes message me, often anonymous,
and they’re just so apologetic, and they say, ‘I supported autism speaks, does this
make me a terrible person? I want to be a good ally to the autistic community, what
do I do, how do I take this back?” And of course you can’t take back what you did
in the past, but everyone non-autistic, autistic, neurodivergent, neurotypical, everyone is
constantly in the state of growth and change. And by accepting that growth and change and
by realizing that, you may have made some mistakes or thought some wrong things in the
past and now that you are educated, now that you know, you can start being really involved
if that is what you want, to be an ally to the autistic community. You can read and distribute
the writings of autistic people. You can support and encourage, and stand behind and lift up
your autistic family and friends and members of the autistic community who are working
hard to bring our society to a place of equality and acceptance.
Who you were five minutes ago is not who you are now, we are in a constant state of flux
and change, nobody has to be static, you can choose to hold on to those negative feelings
or you can choose to, take a deep breath, let it go, and move forward. Because honestly,
with all the negativity and the cure culture and the nastiness out there the autistic community
really does need all the allies that it can get. We need you, and if you are the parent
of an autistic child, you are in a privileged position to say no to the idea that autistic
children need to be cured of their autism or encouraged to act more neurotypical. And
if you are an educator or a therapist, or anybody who as a professional works with autistic
people, it is especially important for you to read the writings of autistic people, to
hear our voices and to listen to our stories and to take all of this into considerations.
And in that way you can have a very complete and accurate picture of what autism is and
what it means to be autistic and there is no better way to learn that than from autistic
people.
And I would like to hear from you guys, what are your thoughts on what it means to be an
ally, and what are ways that you think that allies can be supporting the autistic community,
what are ways that all of us together, autistics and non-autistics, can bring society towards
a place of acceptance and inclusion. And if you have an autism related question that you
would like answered, or a topic you would like discussed in one of my videos, feel free
to post it in the comment section or message it to me if you would like it to be anonymous.
Thank you for watching my video, and happy autism acceptance month.
[Closing music: “I want to write a song, to shine a light. Be the change we want, set things right. We’ve been waiting in the dark for so long."]