Widgets Magazine

OPINIONS

We don’t need your help

This month is dually known as Autism Acceptance Month (by Autistics and our allies) and Autism Awareness Month (spearheaded by Autism Speaks, a cure-centric organization with little support from the Autistic community). Whichever you prefer to recognize, you have probably seen Light It Up Blue or a similar campaign by Autism Speaks, or read a news article about the “staggering” number of Autistics, and how our lives our so difficult.

You might even have been inspired by one or another of these campaigns, either this year or before, to consider altering your career path to do something to help “people with autism.”

We, the below signed members of the Stanford Autistic community, would ask you to reconsider.

Many Allistics (people with an Allistic neurology; that is, people who are not Autistic) believe that they can help us through researching how to find “cures” or how to “mediate” the symptoms of Autism. Many will want to find the confluence of factors that causes a kid to become Autistic. Still others will be determined that they can further differentiate Autism (and Autistics) into a multitude of categories, in the hopes that more labels will somehow make us more self-aware.

We would ask: What does this work actually accomplish?

We do not need more labels. We do not need to know why we have a different neurology than you. And we certainly don’t need to know how to fix something that isn’t broken.

This and similar types of research achieve nothing but the continued marginalization of Autistics, and the perpetuation of stereotypes and myths about our “disorders.”

We are not disordered. We have a different neurology than you do, that can be fixed no more than yours can.

If you want to help Autistics, we encourage you to go into careers that will actually benefit us instead of trying to “cure,” “mitigate” or “eradicate” something we, along with many of our family members and our allies, consider a beautiful variation of human existence.

Go into researching the needs of Autistics at different ages, and how those needs can be met and accommodated as the person grows and enters school, college, the workforce and retirement homes. Develop classroom strategies that work in harmony with Autistics’ strengths and needs, which empower us to stim, instead of making us feel ashamed for being who we are. Build cheaper and more accessible alternative and augmentative communication (AAC) devices for non-speaking or minimally speaking Autistics, to help translate their communication to others around them. Help parents understand that there is nothing wrong with them or their child, and teach them how to raise their child in an environment that is supportive, loving and nurturing to the child’s whole, Autistic self.

Autism Speaks, the main autism organization in the world, is nearly universally disliked and resisted by Autistics, in large part because so little of the research actually benefits Autistics. Most goes towards finding cures and preventive care, something some parents might want, but Autistics do not. Additionally, the Autistic Self-Advocacy Network, an Autistic-run and supported advocacy group, demonstrates that “According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.”

Whatever you do, listen to us. Not just the three of us. We represent a minute fraction of the millions of Autistics alive. Pay attention to what Autistics are asking of you and what it is we actually need.

We would like to quickly note that many consider us three Autistic signers to be out of touch with what actual Autistics needs. Our critics are not Autistics, but often family of Autistics (or people with autism), who suggest that our intellect and achievement somehow disqualify us from experiencing “real” Autism.

To this, we have two things to contend. We have experienced our fair share of ableism, harassment and abuse. Though they come in different forms, and we have largely overcome them, high collegiate and intellectual achievement does not negate the many challenges we have faced due to our different neurology.

At the same time, we acknowledge that there are many Autistics with more limitations than we have, who are more disabled by society than we are. But we also feel that many Allistics use more obviously disabled Autistics as a way to combat less obviously disabled Autistics, without actually caring about either, and that the divisions of high-, mid- and low-functioning that Allistics have created for us do little more than divide and hurt us. As Amy Sequenzia, a non-speaking, diagnosed “low-functioning” Autistic, wrote, “there are many of us trying to be heard. We did not put the “low” in “low-functioning” and we are speaking out.”

If you feel called to help us, don’t work for an organization the vast majority of us condemn, an organization that considers us an epidemic, a burden and a tragedy. Don’t perpetuate the notion that we need to be fixed, or that our lives are somehow worth less than others’. Don’t ignore our critiques, or insulate yourself from actual Autistics.

Instead, use your power and privilege to help us make the institutional and social changes we need to live happier, healthier and more fulfilled lives.

Autistic Stanford students

Erika Lynn Abigail Persephone Joanna Kreeger ’16

Olivia Montoya ’15

Anonymous ’17

Contact Erika Lynn Abigail Persephone Joanna Kreeger at ekreeger ‘at’ stanford.edu and Olivia Montoya at omontoya ‘at’ stanford.edu.

  • Amen. I didn’t know I had Asperger’s until after my son was diagnosed, and graduating summa cum laude with my Master’s degree doesn’t make it any easier for me to deal with overstimulation, lack of understanding with friends and family, or feelings of guilt and shame for what my wonderfully supportive husband has to “put up with” when helping me meet my needs.

  • Erika Lynn Abigail Persephone

    Exactly! If only Autism Speaks U Stanford folks could understand that. Thanks 🙂

  • Deborist ‘Zen’jamin

    Talk about labels, what is the etymology of allistics? What does it mean?

  • Deborist ‘Zen’jamin

    I meant etymology of allistics a big duh!

  • Seth O’Bannion

    allistics means ‘other’-ism, in contrast to the way autism means ‘self’-ism.

  • Inglevine

    “But we also feel that many Allistics use more obviously disabled
    Autistics as a way to combat less obviously disabled Autistics, without
    actually caring about either,”

    Really? Speaking as an autistic woman with one child with Aspergers and another who is severely austic, I find that the autistic rights movement often tries to sweep the existence of people like my son under the carpet because his existence detracts from you arguments. Severely autistic people exist and for them a cure would improve the quality of their lives enormously.

    So speak for yourself but don’t generalise your experience. It’s not universal.

  • CCTX2

    I salute you! I am an autistic person, and I am a licensed attorney, and routinely I am told I must be lying about either my diagnosis or my law degree. I don’t need people to pity me; I don’t need people to treat me with suspicion. I need people to understand that I do things a little differently – most people run Windows, I run Linux, if you will. Doesn’t mean I’m broken. Well done!

  • CCTX2

    What does your son say for himself? I’m not particularly interested in your opinion about your son’s neurology. You have every right to speak for yourself, but not for him.

    Please look up nonspeaking, “severely autistic” people who don’t want a cure. I can give you names. Amy Sequenzia. Ido Kedar. Henry Frost. Mel Baggs. Dora Raymaker. You’ll find many more.

  • Chris Harmon

    Huh.. so true.. I was a student at Stanford in 1990/91. I even wrote for the Daily once or twice. I had no idea I was/am autistic/ADHD etc until my 30s. Part of the reason I had to stop out was due to my inability to navigate the intricacies of collegiate life- especially Stanford. (small fish in a big pond syndrome) … other reasons for stopping out include-my parents divorcing. I broke up with my high school boyfriend to whom I was also engaged. I was raped at a frat party. I quit track due to verbal abuse from Brooks Johnson. I struggled greatly, and asking for help was too hard, by the time I did I needed it BADLY, and the counselor I spoke with didn’t get it.. so I ended up leaving. Am finally now considering going back to college to be a nurse. Scared, because I don’t have an official diagnosis, and am not sure how well I can navigate school this time- as a mom, wife and currently full time employee- in a pretty crappy job for a former Stanford student that keeps food on the table but not much else.

  • JaySprout

    Why a cure, and not effective treatment to improve his quality of life?

    There in lies the difference, autistic rights movement seeks to help improve the lives of Autistic people, a cure means literally wiping out Autistic people – your Autistic son, if cured, would not longer be who he is…not Autistic, not him.

  • Erika Lynn Abigail Persephone

    Thank you for sharing this. I appreciate learning more about the history of Autistics at Stanford. I’m sorry you had to struggle so much on your own. People in the system are becoming more educated and aware, but the system itself is not accommodating as it could be. Though they can help with many things, and have with great success, there are also many needs particular to Autistics that they do not yet accommodate–despite having one of the largest endowments in the word!

    Whether you do go back to school or not, I hope everything goes for the best! Whatever you choose, I’m sure you can do it 🙂

  • Erika Lynn Abigail Persephone

    I do think there is a conversation that needs to happen about the role more obviously disabled Autistics, including non-speaking Autistics, play in Autistic Rights and Justice advocacy, as I think there are elements of Autistic Advocacy where the communications and physicality is dominated by less obviously disabled Autistics. However, I take issue with several of the points you make. A cure will not help your son. A cure cannot exist.

    I’m curious why you say less obviously disabled Autistics sweep people like your son under the carpet. If there are any specific examples you can point to, I would be sincerely appreciative. I would love to better understand this criticism in the hopes of ameliorating the source of conflict (if that is something I can even do).

  • Inglevine

    A cure, treatment, whatever. I’m just sick of his existence being ignored because it’s inconvenient to the “cause”. He’s a beautiful, wonderful person and he’s having a happy life, so far, although I’m terrified of what will happen to him when he’s an adult and we aren’t around to look after him any more.

    I disagree that a cure means “wiping out Autistic people”. I disagree that taking medication that helped me integrate better with other people would destroy who I am as a person. The brain doesn’t work that way. It’s not a case of erasing everything and starting again, it’s a case of changing and helping.

  • Inglevine

    This is EXACTLY the attitude I’m talking about. What does he say for himself? He says “trampoline” and “duck restaurant” and “cuddle”. Your comment indicates that you’ve never come across a severely autistic person in your life, because the idea that he can “speak for himself” doesn’t apply. He has the cognitive ability of a three year old. He doesn’t know he’s autisitc, he wouldn’t understand the concept of a cure so he can’t express an opinion about it. Stop igorning the existence of people like him! You make me so cross and you make my heart ache for my son. He deserves to be acknowledged a person rather than ignored. If the people you are referring me to can express the fact that they don’t want a cure in any way–typing, signing–any way at all, then they are nothing like my son. He cannot type. He can only communicate immediate, basic needs and desires.

    You’re the one who need to educate yourself. Your attitude is stripping the autistic rights movement of any credibility because it’s ignoring basic facts about what “spectrum” means and pretending that people like my son don’t exist.

  • Inglevine

    I think when you read the word “cure” you are thinking of a magic wand that makes autistic people suddenly not autistic? That’s clearly not what’s meant. And I can tell you, given my traumatic childhood and the PTSD I deal with as an adult, if there’d been a drug that would have helped me integrate better with my peers, I’d have taken it. Speaking for myself, as an autistic person.

    If you want an example, look at CCTX2’s comment right above. I don’t have the right to speak for my son? Well, my son cannot speak for himself, as far as autistic issues are concerned because he doesn’t have the cognitive ability. He does speak. He’s not an autistic person who is non-verbal but is able to communicate through typing or other technology. But he has very limited intellectual abilities. He cannot tell me how he’d prefer to be advocated for, because those kinds of ideas aren’t a part of his world.

    Stop telling me that I can’t “Speak for my son”. If I don’t, no one will. He can’t do it for himself. I hear this attitude expressed over and over and over again in the autistic rights movement, the idea that everyone on the spectrum has a voice if only we’d stop to listen. It’s not true. There are a LOT of kids like my son out there, I know because I advocate for him and fight for his rights in the company of their parents. And I never see kids like my son acknowledged by members of the autistic rights movement who are able to communicate.

  • Katja

    This is not the day to mess with me about this.

    For starters, have you even considered stuff like PECS? iPad? Sign language? Letter board? Or are you one of those parents who demands verbal communication even when it may not be the best thing for your child?

    Secondly, don’t you dare presume to tell me how “high functioning” I must be just because I can type. Parents do this to us all the time – if we can type and make a coherent argument, we’re too “high functioning” to know “what their child deals with.” And if we can’t, if we’re nonverbal and need help with the slightest task, we’re too “low functioning” to tell we’re autistic or be authorities on our own lives. When do you listen to your fellow autistics? I’m guessing “never.”

    Thirdly, functioning labels are inaccurate and ableist, because functioning is not static. We are all “high” and “low” functioning at varying times. So don’t put your kid in a box, and don’t you dare try to speak for me and attack me with your “not like my child” crap. If you’re autistic, you’re a shameful example of how buying into the rhetoric that we are tragedies makes our lives immeasurably harder. Google “neurodiversity,” research the names I give you, and stop presuming incompetence.

    http://wearelikeyourchild.blogspot.com

  • Katja

    Stockholm syndrome ableist bitch.

  • Erika Lynn Abigail Persephone

    I’d like to quickly point out I never said you can’t speak for your son.

    I also am trying not to be combative. I’m very curious.

    I think the issue boils down to how we go about dealing with ableism in society. I would argue that it’s better to have society mold to us, than for us to mold to society, while it seems (and correct me if I’m wrong) you would prefer the opposite.

  • Inglevine

    Drop dead, SJW zombie who can’t think for herself.

  • Inglevine

    Goddamit, YES! We have tried all those things. PECS, Sing language, ipad etc etc. Why is it so hard for you to accept that there are a lot of people on the spectrum who aren’t highly verbal, either internally or externally? Why do you and others like you continually, CONTINUALLY insist that kids like my son don’t exist? He does exist. He’s autistic. Stop pretending that he doesn’t in order to enforce your own person agenda.

    He does not have the same level of cognitive function that you do and it’s the same for many, many other autistic people. This is a fact. If you want to advocate for autistic people then you have to acknowledge and accept this.

    You clearly have no clue what my son deals with or who he is or what he’s capable of. I can assure you, he’ s an extremely happy, well looked after boy who gets tons of love because we know who he is and what he needs and aren’t fooling ourselves.

    I never came close to trying to speak for you. Who the hell are you? I dont’ know you. You can speak for yourself, clearly, even if you do have some serious empathy issues and are wearing blinders about the full breadth of the autistic spectrum.

    I have done, I’m sure based on your comment, far more research into autism than you have, given your refusal to accept the existence of people like my son. Your bull-head insistence that only if he had an ipad, only if he had pecs, he’s be just as verbally fluent as you. He wouldn’t be. He never will be. That’s not the kind of person he is, get it into your head.

    I’m sick to death of having to interact with people like you, hostile, ignorant, name calling, brainwashed by social justice idiocy. With people like you at the front of the movement, we’ll never achieve anything because you’re irrational and you bury the truth for your own benefit.

    You don’t know my child. At all. Don’t presume to tell me that you do.

  • Inglevine

    You are being fair and reasonable. Some of the other commenters are not and it’s winding me up to the extreme.

    And, no, I wouldn’t prefer the opposite. I’m confused as to why I’m finding it so hard to make myself heard in this coversation. I would like great understanding and support for all people on the spectrum, my son included. I’m sick of verbal autistic people (whether they are verbal through their voice or through other methods) telling me that my son would be able to blog and advocate for himself only if he had the right tools! That attitude shows that they are ignoring and denying the existence of people on the spectrum who aren’t as cognitively able. I don’t know how else to put it. He has the intellectual capacity of a three year old, he can’t read, he can’t add or count, he can’t write his name, etc etc. He will never be able to, because that’s how his mind is wired.

    Can you acknowledge that?

    It has nothing to do with ableism. It has to do with the constant barrage of HATE I and other parents of autistic kids get from people like the commenters here. I have put everything I have into parenting my kids, because I know exactly what it’s like to be autisitic in a world that doesn’t mold to us. They are very different children and they needs different kinds of care. Any my experience is dismissed despite the fact I’m on the spectrum too, because the reality I experience doesn’t support the agenda.

  • Inglevine

    Seriously, I wish the worst for you. You’re a shitty person who deserves as much pain as you dish out to other people.

  • Erika Lynn Abigail Persephone

    I’m not suggesting your son will or should blog about his experiences, or that he will or can be able to advocate for himself. For reference, my family works with Autistics, and I am not just exposed to, but have personally worked with people–Autistic and Allistic–who have limited understanding.

    I think there are two things going on that are causing anger. One is that many Autistics are presumed incompetent because the can’t speak, and so there are many Autistics who react very strongly when comments about a non-verbal Autistics having limited understanding and intelligence are made. The other is the notion you seem to extend that your son’s limited understanding, verbality, cognition, intellect, what not, is a bad thing, something that must be fixed.

    I realize this is a sensitive subject, and I want to state that I’m saying this as a critic, in general, of labor and capitalism, and not out of a paternalistic sense of duty towards your son. But, as disabled activist Sunny Taylor notes, not everyone can work, not everyone can live a life capitalism would deem meaningful, and that’s ok. Here’s the full piece. It’s a great read. http://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability/

    I think it’s also important to note that Autism and intelligence, cognition, understand, etc, are not linked. There are people of all neurologies with limited intelligence, cognition, and understanding, and that’s ok. Changing his neurology won’t change that. Changing society so that one’s value is not dependent on what one person can do and that all are supported regardless of one’s output, will however increase your son’s well being. I think that Autistic Rights advocates must do a better job of articulating and extending this point.

    Again, I realize this is a sensitive topic, and what I have said may come across in a negative way. Please know that it is not meant like that.

  • The semantic differences between “cure” and “treatment” are light years away from each other. Autism is one of MANY conditions that cannot be cured, only treated. The words have distinct medical definitions. When an organization like AS says it wants a cure for autism, it’s talking about eliminating the autistic population. Because you can’t cure the structure and “wiring” of our brains. The brain, as you said, doesn’t work that way.

    You mention medication – that is a TREATMENT. I’m autistic, but I happen to also take various medications to treat both my mental and physical health. My meds are not a cure – if I stop taking them, they’ll stop helping me. I go to therapy, and I learn coping skills and try to unlearn some of the negative associations I have from being socialized as if I were allistic because no one had heard of Asperger’s when I was growing up, and “suck it up and stop crying” really isn’t helpful when you’re having a meltdown.

    I don’t think any of us are trying to ignore autistic people on the other end of the spectrum. I have a nonverbal cousin who recently turned 30. I advocate for him as much as myself. I know that there is no cure for him, but I know his parents have treatment options available that could be better utilized. He is a big man with little impulse control, but when he is with one of his support workers, he is able to eat in restaurants, go to work at his day program, and create amazing works of art. The burden of his care – and I don’t like to use the word burden – has been all on his parents because they didn’t seek outside help, aside from school, until he was an adult. But he’s been spending a few overnights at a group residential facility to see if he can be happy there, because his parents are getting older and won’t always be around for him. He seems to like it so far, and his behavioral therapists have been able to help him so much. His life has been much richer for it. I think he will be able to thrive in a supportive environment, which is important for people on every part of the spectrum.

    In any case, your son is not being ignored by 95% of “autism awareness” advocates. It’s only recently that those of us who are less obviously autistic have had any sort of voice at all in the autism community. This is the first year we’ve collectively made a lot of noise because no one has been advocating for the supports we need as adults – all of the attention in the past has always been on more obviously autistic kids – and only kids, not adults. So you may perceive that we’re the ones controlling the public conversation about autism acceptance, but the truth is, most people still aren’t listening to us.

  • Katja

    I’m sorry you’re so ignorant. Unlike you, I don’t ever give up on people being able to communicate. You know your child better than I do, but I know what it is like to be autistic, and it pisses me the ever loving fuck off when arrogant, obnoxious parents try to paint the autistic spectrum as a tragedy. Your inability to find a way to communicate is not a fucking tragedy. Your son is still entitled to dignity, respect, and the right to be seen as a whole person, and the way you talk about him sickens me. I’m going to keep advocating for EVERY SINGLE AUTISTIC PERSON to be given the help and services THEY deserve, their negative, ableist parents notwithstanding. So go to hell.

    Dear Stanford students who posted this, ignore this bitch. She’s mired in thinking that her kid is a failure. None of us are failures.

  • Katja

    You are some psycho bitch. Hope your kid gets taken away before you murder him and claim you “snapped.”

  • Jonas

    Inglevine, don’t let them get to you. The internet isn’t representative of the real world. I think you’re absolutely right.

  • kathryn hedges

    Wow, that’s a great way to prove you’re a good person.

  • kathryn hedges

    If all the cars are going the other way and honking, maybe you’re the one driving on the wrong side of the road.

  • Inglevine

    You do realise that you are the outliers, right? The vast majority of people are driving my way. Maybe because we think for ourselves rather than swallow irrational dogmatic bullshit that ignores reality.

  • Inglevine

    Responding to a personal attack with anger? I’d say that’s not only reasonable and human but healthy.

  • kathryn hedges

    Wait, what? You said everyone is criticizing you for the way you talk about your son. Now you say the vast majority agree with you. You can’t have it both ways.

    I’m glad my mother didn’t give up on me, and that’s my last word here.