Neurotypical Advocacy & Allies of People on the Spectrum12 min read

In the world of autism advo­cacy, it is rarely the autistic voices which are pio­neered in the main­stream.  Neurotypical advo­cates use their voice and their priv­i­lege to speak on behalf of, or in place of, the autistic com­mu­nity. 

While these efforts are often well-intentioned, they are con­tributing to the con­tin­u­a­tion of stereo­types that autistic people are inca­pable of speaking for them­selves.  Even if the advo­cacy is rooted in the heart of a neu­rotyp­ical mother whose child is on the spec­trum, neglecting to amplify the voices of authen­ti­cally autistic people cre­ates bar­riers to empow­ering her child(ren) by rein­forcing biases about the inca­pacity of autistic people to speak for them­selves.  This model of autism-as-a-mascot for neu­rotyp­ical mothers has been a major source of con­tention within the insider autistic com­mu­nity.

Even in med­i­cine and behav­ioral sci­ence, the infor­ma­tion avail­able about autism and what it means to be autistic is con­ceived and (mis)understood through neu­rotyp­ical per­cep­tion and models of nor­malcy.

But, there are a few who use their tal­ents, resources, and priv­i­lege to bring autistic voices to the table and insist that neu­ro­di­verse people be included in edu­ca­tion and decision-making which directly affects the lives and liveli­hood of autis­tics.

One such ded­i­cated ally is Jenna Gensic, founder of LearnFromAutistics.com, a web­site which pro­vides par­ents and care­givers with resources and edu­ca­tional mate­rial written and informed by #actu­allyautistic voices.

I first became of aware of Jenna when she con­tacted me after reading an article I had written for PsychCentral.  She wanted to inter­view me about diver­sity, employ­ment, and func­tion labels for pub­li­ca­tion on her web­site.  In turn, I asked her if she’d be willing to con­tribute her knowl­edge and expe­ri­ence as an ally.

Below is that inter­view…

What prompted you to start learnfromautistics.com?

I started this web­site in the process of con­ducting research for a book I was working on. I was sur­prised at what I had been learning as I talked with adult autis­tics, and fig­ured other par­ents could ben­efit from what I was learning as well.

When I first started talking to people on the spec­trum, I was hoping to find some kind of “cheat sheet” of what to say or what not to say to autistic people. But ulti­mately I real­ized that reg­ular dis­cus­sions with autistic indi­vid­uals were my best source of infor­ma­tion. I learned new ways to sup­port the autistic com­mu­nity, and this process unveiled my ableism so I could address it.

I-think-the-best-thingThis web­site started as a way to share what I was learning from the autistic com­mu­nity with other neu­rotyp­ical par­ents and care­givers. I’ve been pleas­antly sur­prised with the will­ing­ness most people have to share their sto­ries if it can ben­efit others. I’m hon­ored to serve as a plat­form to sup­port autistic voices in this way.

I first learned about autism when my younger brother was diag­nosed with Asperger’s Syndrome. He was in eighth grade at the time, and I was in high school. Growing up with an autistic sib­ling gave me some insight into the chal­lenges of autism and the need for soci­etal accep­tance.

When my first son was born pre­ma­turely (at 1lb, 12oz), and later diag­nosed with autism, I was moti­vated to con­tinue learning about autism in order to pro­vide him with the best oppor­tu­ni­ties to learn, grow, and achieve his full human poten­tial. After reaching out to med­ical pro­fes­sionals, ther­a­pists and other fam­i­lies with autistic chil­dren, I still felt unsat­is­fied with this “expert” advice.

I began filling this void by seeking out advice from autistic indi­vid­uals them­selves and quickly real­ized this was where I should have began. I doc­u­mented my ini­tial pur­suit of this knowl­edge in a book that will be pub­lished early next year. I’ve con­tinued to reg­u­larly reach out to the autistic com­mu­nity, and, with per­mis­sion, pub­lish their insights on my web­site.

What are mis­takes you feel that NTs make when they begin advo­cacy?  What advice do you have for NTs about being an ally?

NTs-are-NOT-true-expertsSo many! This is some­thing I even­tu­ally want to write a book about. I’m working on col­lecting research about advo­cacy from the autistic com­mu­nity now.

Advocacy is espe­cially inter­esting to me because there are so many people who not only are unaware that their efforts aren’t helping, but they’d prob­ably feel ter­rible that they may be causing addi­tional harm.

There are def­i­nitely fringe advo­cates whose motives and gen­uine respect for autis­tics are ques­tiona

ble; how­ever, I really believe most advo­cates want to do the right thing and be helpful. If they were given a nudge to put them more on course, what tremen­dous ben­efit this could bring to the autistic com­mu­nity! So that’s what I hope to help with.

I think the biggest mis­take NTs make when they first begin advo­cacy (and one I cer­tainly made) is to assume that the best way to help is to do what­ever you can to help them nav­i­gate society as an NT would. This might include encour­aging an autistic to act NT (or forcing hours of therapy to achieve this end).

It also includes the assump­tion that autistic people are not happy with who they are and how they expe­ri­ence the world, so they must need an NT to help them learn to fix this. Or believing autis­tics need neu­rotyp­i­cals to help them advo­cate for them­selves or to guide advo­cacy efforts.

NTs are NOT true experts on the autistic con­di­tion, no matter how much they study it from afar.

Similarly, I think many NT advo­cates need to reframe their per­cep­tions on com­mu­ni­ca­tion and social inte­gra­tion. I cringe to admit this, but I think it’s instruc­tive, so I’ll share an example here. I remember sev­eral years ago when I was inter­viewing a col­lege stu­dent on the spec­trum, and I asked, “Are you con­stantly aware of your autism or do you feel socially inte­grated?”

We-must-adjust-our-ownThe inter­viewee right­fully put me in my place, explaining “Why can’t I be both?” This is an impor­tant part of accep­tance. NTs must stop assuming that autism always exists apart from pos­i­tive social­iza­tion. If NTs were more accepting of autistic behavior, this might help a bit with the anx­iety that accom­pa­nies social sit­u­a­tions.

NTs can’t assume autis­tics need sup­port to get to an NT stan­dard and that this is the best way to help. We must adjust our own per­cep­tions and behavior and take a serious inven­tory of what­ever we are trying to “cor­rect.”

I had a friend with an autistic son who told me that she was trying to stop his rocking behavior by taking his iPad away when he rocked. I asked her why she wanted to stop the behavior. He wasn’t hurting anyone. And I pointed out that the rocking might be a way to com­mu­ni­cate his excite­ment, focus on his activity, keep calm and com­fort­able, or any number of other things. She couldn’t pro­vide an answer about why she wanted him to stop rocking except that it was dis­tracting. She thought she was being a good parent by “teaching him how to act,” but if she simply would have left the room, she wouldn’t have been dis­tracted, and her son would have been happy, engaged, and pro­duc­tive.

I think the best thing NTs can do before starting any advo­cacy work is to talk to autistic people. Find out exactly what they want and don’t want. Learn about who you’re advo­cating for and don’t assume you under­stand every­thing they need/want. Sure dis­crep­an­cies will arise, but I guar­antee you’ll learn enough com­mon­al­i­ties to get you started. And you’ll save your­self from making a few inevitable mis­takes.

If-we-really-want-toIt was a hum­bling expe­ri­ence to realize that I couldn’t call myself an ally. Autistic people can name their allies, but NT people can’t call them­selves allies. We can strive to be allies with hard work and hope we are doing the right things to earn the title, but it isn’t ours to claim.

I think if NTs under­stand this before starting any advo­cacy efforts, this will lead them to lay a good foun­da­tion of learning from the autistic com­mu­nity before they begin their own cam­paigns. If we really want to advo­cate for indi­vid­uals on the spec­trum, we must learn to be ser­vants to the autistic com­mu­nity, not leaders.

Were there moments when working with autistic people when some­thing pro­foundly moved you, inspired you, or caused you to see some­thing in a new light? 

One example of this was the social inte­gra­tion inter­view ques­tion I men­tioned in the pre­vious ques­tion. Another eye-opening experience(s) was hearing people on the spec­trum talk about the social/medical models of dis­ability. I was already familiar with these terms, but lis­tening to autistic people talk about how this per­son­ally affected them was impor­tant for me.

It’s one thing to read about dis­ability models in a book, but it’s another to hear someone talk about how it affects their lives. Hearing someone tell me that it wasn’t autism that caused them prob­lems, but it was the lack of society accepting autism that was the problem–this was a turning point for me. It puts an emphasis on NTs that we aren’t used to having. It gives us respon­si­bility (beyond what­ever walk we want to sign up for or bumper sticker we put on our vans).

NTs must change to make a dif­fer­ence.

When I first started for­mally inter­viewing people for my book research and the begin­nings of the learnfromautistics.com web­site, I gave people a lot of freedom to dis­cuss what they wanted. I expected to learn spe­cific ther­a­pies that helped or hurt them, thereby giving par­ents insights to effi­ciently direct their therapy reg­i­mens or what­ever sup­ports they were seeking. What was most sur­prising to me is that while therapy was dis­cussed at times, it was never the sole focus.

There were so many other ways that par­ents could help their chil­dren develop con­fi­dence and achieve suc­cess. So many people talked about accep­tance and devel­oping a pos­i­tive autistic iden­tity. This is often over­looked in the pur­suit of therapy, but I’ve learned that it is most impor­tant.

Anyone who works in advo­cacy as an ally of any mar­gin­al­ized group is always oper­ating from the per­spec­tive of an out­sider.  What are some bar­riers you face or inse­cu­ri­ties you have as an ally?

This is some­thing I’m always con­scious of. When I was first begin­ning autism advo­cacy work, I wanted to find a manual of every­thing I should be doing so I knew I wouldn’t offend anyone. But making mis­takes was the best way to realize how I could shape my efforts to be more sup­portive and pro­duc­tive.

Some inse­cu­ri­ties I have are in cen­sor­ship within my role as an advo­cate. For example, I don’t like to do to much editing to my inter­views. I want the autistic voice to be at the fore­front of the con­ver­sa­tion, not what­ever message/perception is a part of my own agenda. But everyone makes mis­takes, and many could use help aug­menting their mes­sage. I some­times err on the side of little editing because I don’t want to appear as if I am trying to speak for someone.

I have chosen to use my web­site to pro­mote autistic voices, but I do have a few prin­ci­ples that guide who I select to inter­view or how I choose to “edit,” if it’s nec­es­sary:

  • Listening to what autis­tics have to say is valu­able.
  • Embracing and teaching neu­ro­di­ver­sity is a key strategy to improving the lives of many autis­tics.
  • There are con­crete ways society can help improve the lives of autistic indi­vid­uals.
  • Promoting accep­tance and respecting the dig­nity of all people is ben­e­fi­cial to all of society.

I don’t do inter­views with people who don’t agree with one of the above state­ments, but I still feel con­flicted about this because I would like to be a ser­vant to all people on the spec­trum, even those who dis­agree with me (or others in the autistic com­mu­nity) about the best ways to help.

Additionally, there are a lot of dif­ferent iden­tity and lan­guage pref­er­ences among the autistic com­mu­nity. While most of the people (but not all) I inter­view prefer identity-first lan­guage, there are still many other dis­crep­an­cies, such as avoiding ref­er­ence to autism as a “spec­trum” and instead using “con­stel­la­tion.”

When I first approach someone new, I want to com­mu­ni­cate that I am sen­si­tive to dif­ferent ways of iden­ti­fying, but some­times this is dif­fi­cult when there are so many dif­ferent pref­er­ences.

Have you had to censor any autistic voices?  What was that like? 

Yes, one time I had an inter­viewee speak ill of someone in a high posi­tion of a well-known autism self-advocacy ser­vice orga­ni­za­tion. I didn’t feel com­fort­able using the per­son’s name, but I included the inter­vie­wee’s story and what she felt uncom­fort­able with.

I wanted the story to be instruc­tive without calling into ques­tion any par­tic­ular per­son’s char­acter. I felt uncom­fort­able editing even this small part because the expe­ri­ence obvi­ously trou­bled her and she felt pas­sion­ately about it. But, in gen­eral, I feel like giving people the ben­efit of the doubt when it comes to advo­cacy is impor­tant. I think working together is impor­tant since our inten­tions are sim­ilar.

How do you find people to con­tribute to the web­site? 

I typ­i­cally find autistic advo­cates online and con­tact them to see if they are inter­ested in inter­views. I look for people who are already speaking or writing about autism since I know they are typ­i­cally com­fort­able with being a public advo­cate.

Occasionally I have asked people I know who are not already public advo­cates. I also have people con­tact me through my web­site saying they are inter­ested and some former inter­vie­wees will rec­om­mend others to me as well.

How do autistic people gen­er­ally receive you when you reach out for inter­views or to share their sto­ries?

I’ve been over­whelm­ingly sur­prised by how pos­i­tive people are and willing to par­tic­i­pate! Occasionally people will express interest but are too busy to follow through, which is under­stand­able. In the almost six years I’ve been reaching out reg­u­larly to the autistic com­mu­nity, I have only had one person turn me down for an inter­view. Most everyone I’ve reached out to is impressed with the tone of the learn­fro­mautis­tics site and is willing to con­tribute when they have time.

I’ve recently become aware of anti-autism hate groups.  Have you ever been attacked or crit­i­cized by NTs who feel that you are roman­ti­cizing autism?

Unfortunately, yes. I was orig­i­nally con­flicted about mod­er­ating com­ments on my web­site, but I’ve real­ized that this is nec­es­sary to avoid some hateful exchanges that are some­times sent my way. I am com­pletely open to a respectful dia­logue of dif­fer­ences, but I can’t tol­erate unrea­son­able, hateful attacks.

Thankfully these have been rel­a­tively few, but I’ve had one person assert that autism is a pun­ish­ment by God for immorality and sug­gested that anyone who doesn’t want to get rid of autism will receive eternal damnation.…so… I had to delete that one. But that’s an extreme example.

More often, I get crit­i­cism from other par­ents who sug­gest that the neu­ro­di­ver­sity move­ment shouldn’t be speaking for more “severely affected” indi­vid­uals and that teaching autism accep­tance is dan­gerous because it deem­pha­sizes the real strug­gles people face and threatens funding which might oth­er­wise be more acces­sible from gov­ern­ment and pri­vate orga­ni­za­tions if we kept the focus on all that is bad about autism.

I typ­i­cally stress that embracing neu­ro­di­ver­sity has so many tremen­dous pos­i­tive ben­e­fits for autistic devel­op­ment that con­demning it is irre­spon­sible. There’s got to be a happy medium.

More about Jenna:

Jenna Gensic is a free­lance writer and dis­ability advo­cate from northern Indiana. She has four chil­dren; her oldest is diag­nosed with cere­bral palsy and autism. Jenna has a BA in English and an MA in English writing; she taught high school English before making the deci­sion to work from home and raise her young chil­dren. She man­ages the Learn from Autistics web­site, and writes and speaks about par­enting issues related to pre­ma­tu­rity, cere­bral palsy, and autism.

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