I’m Not Broken

What this Washington reporter with autism wants you to understand.

This illustration can only be used with the Eric Garcia story that originally ran in the 12/5/2015 issue of National Journal magazine. 
Illustration by Donna Williams
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Eric Garcia
Dec. 4, 2015, 5 a.m.

Not a year out of col­lege and less than two months in­to my job at Na­tion­al Journ­al, I did something that I al­most im­me­di­ately re­gret­ted. It was a Wed­nes­day morn­ing in April, and mem­bers of the Sen­ate Fin­ance Com­mit­tee were fil­ing out of a room in the Dirk­sen Sen­ate Of­fice Build­ing to go vote; I was sit­ting at the press table in the room. As the com­mit­tee’s chair­man, Sen. Or­rin Hatch, was pre­par­ing to exit, I leapt up and yelled a ques­tion at him.

Quickly, the of­ficer next to me warned that if I did that again, I could be ar­res­ted for dis­rupt­ing a hear­ing. I cringed and apo­lo­gized pro­fusely to the of­ficer. I don’t re­mem­ber the spe­cif­ics of what Hatch said in re­sponse to my ques­tion; by that point, everything was clouded by my sense of hu­mi­li­ation.

On the sur­face, it was a simple mis­un­der­stand­ing—a young re­port­er mak­ing a rook­ie mis­take. But what the of­ficer al­most cer­tainly didn’t know is that I am on the aut­ism spec­trum. Like many on the spec­trum, I lack aware­ness of so­cial cues and my sur­round­ings, even when those sur­round­ings in­clude the Sen­ate’s most seni­or Re­pub­lic­an. In oth­er words, I might not un­der­stand that it isn’t the best de­cor­um to shout a ques­tion to a sen­at­or across a room, in­stead of wait­ing for him to get to the hall­way.

Now, you may be won­der­ing: If someone has dif­fi­culty with so­cial in­ter­ac­tions, why would he be­come a re­port­er, which by defin­i­tion re­quires in­ter­ac­tion with oth­ers? Then you also should know that an­oth­er symp­tom of be­ing on the aut­ism spec­trum is a nar­row and sharp in­terest in sub­jects that can bor­der on the ob­sess­ive. For me, one of those in­terests is Amer­ic­an polit­ics. Which means that while aut­ism makes my job as a polit­ic­al re­port­er tough­er, it also, in some ways, makes it easi­er: My abil­ity to my­op­ic­ally fo­cus on sin­gu­lar sub­jects helps me to learn about things like the in­tric­a­cies of tax policy or the latest polling num­bers com­ing out of Iowa.

I’m hardly the only per­son with aut­ism who has ended up pur­su­ing a ca­reer in Wash­ing­ton; people with aut­ism are, after all, every­where in the world. Yet des­pite our pres­ence in D.C., the polit­ic­al con­ver­sa­tion sur­round­ing aut­ism is of­ten mad­den­ingly dis­con­nec­ted from our lives.

When aut­ism gets talked about by politi­cians, it’s fre­quently in the con­text of the (un­foun­ded) the­ory that the con­di­tion is caused by child­hood vac­cines. For in­stance, dur­ing the second Re­pub­lic­an pres­id­en­tial de­bate a few months ago, Don­ald Trump pro­claimed that “aut­ism has be­come an epi­dem­ic” and sug­ges­ted vac­cines were to blame. But even when the sub­ject isn’t the sup­posed con­nec­tion between aut­ism and vac­cines, aut­ism is of­ten talked about as a dis­ease, like can­cer or polio—something that needs to be erad­ic­ated. When Pres­id­ent Obama an­nounced a new pro­ject fo­cused on brain re­search in 2013, he men­tioned that it is dif­fi­cult to find a cure for aut­ism, lump­ing it in with Alzheimer’s dis­ease. Sim­il­arly, in a Re­pub­lic­an de­bate in Oc­to­ber, Ben Car­son was ques­tioned about his re­la­tion­ship with a nu­tri­tion­al-sup­ple­ment com­pany that al­legedly claimed it could cure aut­ism.

Of­ten when aut­ism is dis­cussed, the fo­cus is on par­ents and young chil­dren. In Decem­ber 2012, the House Over­sight and Gov­ern­ment Re­form Com­mit­tee held a hear­ing titled “1 in 88 Chil­dren: A Look in­to the Fed­er­al Re­sponse to Rising Rates of Aut­ism.” The com­mit­tee’s then-chair­man, Rep. Dar­rell Issa, opened the hear­ing by say­ing that he is for­tu­nate not to be a par­ent of one of the “one-in-88” chil­dren with Aut­ism Spec­trum Dis­order (the Cen­ters for Dis­ease Con­trol and Pre­ven­tion have since re­vised the of­fi­cial num­ber to one-in-68, and a sur­vey re­leased in Novem­ber sug­ges­ted the num­ber could be one-in-45). “If the num­bers are ac­cur­ate and con­tin­ue to grow from the now one-in-88 that in some way are ASD-af­fected,” Issa said, “we in fact have an epi­dem­ic.”

When aut­ism in adults does get at­ten­tion, it’s of­ten be­cause tragedy has struck. For ex­ample, when the pro­spect was raised that Adam Lanza—the man re­spons­ible for the 2012 shoot­ing at Sandy Hook Ele­ment­ary in New­town, Con­necti­c­ut—had As­per­ger’s syn­drome, calls to the ad­vocacy group Aut­ism Speaks spiked dra­mat­ic­ally, ac­cord­ing to Time magazine. (In 2013, As­per­ger’s and three oth­er dia­gnoses were merged in­to the lar­ger dia­gnos­is of Aut­ism Spec­trum Dis­order.) More re­cently, after the shoot­ing at Umpqua Com­munity Col­lege in Ore­gon—when there was spec­u­la­tion that the shoot­er had aut­ism—an on­line pe­ti­tion was star­ted to take down a Face­book page called “Fam­il­ies Against Aut­ist­ic Shoot­ers.”

The illustrations that accompany this piece are by Donna Williams, an artist and writer who has autism. All are reflections on how she experiences living with autism.

For those who are on the spec­trum, all of this can be deeply frus­trat­ing. For some of us, aut­ism isn’t a dis­ease but rather something more ana­log­ous to be­ing gay or deaf—a con­di­tion that, yes, im­poses hard­ships but also helps to make us who we are. “There is ab­so­lutely no evid­ence that Alzheimer’s is in any way be­ne­fi­cial to hu­mans—we want to fix it peri­od,” says John Eld­er Robison, a neurodi­versity schol­ar at the Col­lege of Wil­li­am & Mary who is him­self on the spec­trum and has writ­ten a mem­oir about his ex­per­i­ences with As­per­ger’s syn­drome. “Aut­ism is a unique con­di­tion in medi­cine be­cause it con­fers power­ful dis­ab­il­ity and really ex­traordin­ary ex­cep­tion­al­ity.” As a res­ult, Robison ar­gues that there needs to be a dif­fer­ent ob­ject­ive when it comes to help­ing people with aut­ism. “Our duty in aut­ism is not to cure but to re­lieve suf­fer­ing and to max­im­ize each per­son’s po­ten­tial,” he says.

Dav­id Black, dir­ect­or of the Cen­ter for As­sess­ment and Treat­ment in Chevy Chase, Mary­land, and a re­search­er at the Na­tion­al In­sti­tute of Men­tal Health, agrees: “I think what we’re try­ing to do is cure aut­ism—I don’t think that’s the solu­tion.” He ex­plains that the zeit­geist at this mo­ment is fix­ated on some­how fig­ur­ing out the ge­net­ics be­hind aut­ism and mak­ing it go away—when in­stead the fo­cus should be on the qual­ity of life for people across the spec­trum.

I don’t have the an­swers as to why aut­ism dia­gnoses have in­creased.  And I know that for many people, es­pe­cially those with more severe aut­ism—for in­stance, those who are un­able to speak—the con­di­tion can in­deed make life im­meas­ur­ably more dif­fi­cult and can lim­it what they can ac­com­plish in the world. I am very much open to the fact that, for some people, a cure to aut­ism—or at the very least, in­nov­a­tions that could min­im­ize some of the symp­toms—would in fact al­le­vi­ate many bur­dens.

But this is not the case for every­one. The ex­per­i­ences of people with aut­ism are in­cred­ibly var­ied; as Steph­en Shore, a pro­fess­or at Ad­elphi Uni­versity who is on the spec­trum him­self, has said, “If you’ve met one per­son with aut­ism, you’ve met one per­son with aut­ism.” And for many, in­clud­ing me, aut­ism is a valu­able part of our iden­tity. Hence my de­cision to write this art­icle. After keep­ing my journ­al­ism and my aut­ism sep­ar­ate for most of my ca­reer thus far, I wanted to share my story of grow­ing up with aut­ism—and even­tu­ally ar­riv­ing in D.C.—in the hope that it might help my fel­low Wash­ing­to­ni­ans and politicos to see the con­di­tion as more than simply a plague on par­ents or a dis­ease that needs to be cured.

PSY­CHI­AT­RIST EU­GEN BLEULER first used the word “aut­ism” in 1910; he viewed it as a symp­tom of schizo­phrenia. Thirty-three years later, a child psy­chi­at­rist at Johns Hop­kins Uni­versity Hos­pit­al named Leo Kan­ner in­tro­duced his work on early in­fant­ile aut­ism. His first ma­jor study on the sub­ject was based on ob­ser­va­tions of 11 chil­dren—eight of them verbal and three of them what he called “mute.” He found that all the chil­dren had strong in­tel­lec­tu­al ca­pa­city and “ex­cel­lent rote memory,” which en­abled them to mem­or­ize things like a French lul­laby, Psalm 23, or an in­dex page of an en­cyc­lo­pe­dia. But he also noted that when they formed sen­tences, these sen­tences were par­roted re­pe­ti­tions of pre­vi­ously heard word com­bin­a­tions. Loud noises and mov­ing ob­jects, he found, caused the chil­dren great dis­tress. In ad­di­tion, he noted that “the child’s be­ha­vi­or is gov­erned by an anxiously ob­sess­ive de­sire for same­ness.”

Around the same time, an­oth­er doc­tor—Hans As­per­ger—was con­duct­ing his own work across the At­lantic in Vi­enna, on what he called “aut­ist­ic psy­cho­pathy.” In a 1944 study, As­per­ger no­ticed pat­terns in the boys he ob­served, in­clud­ing “a lack of em­pathy, little abil­ity to form friend­ships, one-sided con­ver­sa­tion, in­tense ab­sorp­tion in a spe­cial in­terest, and clumsy move­ments.”

As­per­ger saw “aut­ist­ic psy­cho­pathy” as something that oc­curred across a wide vari­ety of people. By con­trast, ac­cord­ing to Steve Sil­ber­man, au­thor of Neur­o­tribes: The Leg­acy of Aut­ism and the Fu­ture of Neurodi­versity, Kan­ner saw aut­ism as a very rare form of child psy­chos­is and “framed his pa­tients as a strictly defined and mono­lith­ic group, to the point of be­ing will­ing to over­look sig­ni­fic­ant dif­fer­ences between them.”

Dur­ing the last leg of World War II, a school As­per­ger had opened for chil­dren with “aut­ist­ic psy­cho­pathy” was bombed, des­troy­ing much of his re­search. As­per­ger con­tin­ued work­ing after the war and lived un­til 1980, but much of his writ­ing went un­trans­lated from its ori­gin­al Ger­man. Then, in 1981, Lor­na Wing, a doc­tor work­ing in the United King­dom and the moth­er of a daugh­ter with aut­ism, used As­per­ger’s 1944 study—which “had nev­er been trans­lated in­to Eng­lish,” ac­cord­ing to Sil­ber­man—as the basis for her own study, “As­per­ger Syn­drome: A Clin­ic­al Ac­count.” Wing’s work was in­stru­ment­al in shap­ing dis­cus­sions about the aut­ism spec­trum.

Here in the United States, the Amer­ic­an Psy­chi­at­ric As­so­ci­ation did not have sep­ar­ate cri­ter­ia for dia­gnos­ing “in­fant­ile aut­ism” in the Dia­gnost­ic and Stat­ist­ic­al Manu­al of Men­tal Dis­orders un­til 1980; and it wasn’t un­til 1987, three years be­fore I was born, that there was an ex­pan­ded dia­gnos­is for “aut­ist­ic dis­order.” Thus, the sci­ence of be­ing on the spec­trum was re­l­at­ively new when I was grow­ing up.

BE­FORE I WAS ever dia­gnosed with any­thing, when I was eight weeks old, my moth­er no­ticed that I was bothered by the sound of the tele­phone and oth­er noises, and was not eas­ily calmed. My fam­ily first learned I was not de­vel­op­ing in a neur­o­typ­ic­al way dur­ing a kinder­garten pre-screen­ing. My mom was told that I lacked fine mo­tor skills and the abil­ity to make eye con­tact, which were con­sidered de­vel­op­ment­al delays that could be in­dic­at­ive of aut­ism. I was very slow to speak, and, as late as kinder­garten, most of my sen­tences con­sisted simply of re­peat­ing sen­tences I had pre­vi­ously learned.

My child­hood was marked by doc­tor vis­its, dif­fer­ent pre­scrip­tions, and vari­ous ther­apies. I re­mem­ber my mom pick­ing me up from kinder­garten earli­er than the rest of the kids, get­ting me a bite to eat from a Bur­ger King, and then whisk­ing me off to a clin­ic—where I would play board games or rock in a ham­mock to as­sist with my bal­ance. At home, I re­mem­ber be­ing placed in a large tub that my moth­er filled with dry pasta as she ap­plied a rough brush to my skin, which was in­ten­ded to as­sist with my sens­ory pro­cessing. Oth­er times, I would have ice stuffed in my mouth by my speech patho­lo­gist to help me use the muscles in my mouth to speak more nat­ur­ally.

In second grade, I was dia­gnosed with As­per­ger’s syn­drome. (I also have Tour­ette’s syn­drome, which leads to tics and re­quires medi­cine. But I con­sider As­per­ger’s to have been the big­ger factor in my life.) I wish I could say I un­der­stood what the deal was grow­ing up, but when my mom would try ex­plain­ing, I didn’t get it. It wasn’t un­til I got older that many of my idio­syn­crat­ic tend­en­cies began to make
sense to me.

We moved around the coun­try a lot dur­ing my early years, but by the time I was nine, we’d settled in the In­land Em­pire of South­ern Cali­for­nia. At school, I had dif­fi­culty in­ter­act­ing with peers and had little in com­mon with them. The low point came in sixth grade, when some school­yard bul­lies sur­roun­ded and hand­cuffed me.

Ul­ti­mately, I trans­ferred to private schools. While the classes were smal­ler and the teach­ers some­what more at­tent­ive when there was bul­ly­ing, I had few genu­inely close friends and still largely felt like a so­cial out­cast—not be­cause I wanted to be one, but be­cause my lim­ited in­terests rarely in­ter­sec­ted with oth­ers’ in­terests. And class­work was a con­stant struggle in sub­jects that did not im­me­di­ately re­late to my par­tic­u­lar pre­oc­cu­pa­tions.

I loved Amer­ic­an polit­ics and Amer­ic­an his­tory, in­terests that were fueled by my par­ents reg­u­larly read­ing to me about U.S. pres­id­ents and hav­ing me join a Boy Scout Troop (which also provided my first real so­cial in­ter­ac­tions with peers). But what grabbed my at­ten­tion above all else was mu­sic. Some boys re­min­isce about play­ing catch with their fath­ers; I re­mem­ber listen­ing to Rush and AC/DC with my dad, and Spring­steen, Hendrix, and the Ras­cals with my step-fath­er, Bob. (He and my mom nev­er mar­ried but he was as much of a par­ent as my bio­lo­gic­al ones.) For my 10th birth­day, I got my own gui­tar, and I began to take form­al les­sons. After an ini­tial brush with an aus­tere in­struct­or, my par­ents settled on John­Paul Trot­ter, a fresh-faced, sim­ul­tan­eously slightly-bald­ing and long-haired 18-year-old with a Cali­for­nia sun­shine tem­pera­ment. I was one of his first stu­dents. He be­came my first true friend.

I star­ted get­ting my hands on any gui­tar magazines I could find. Dur­ing this time, I sub­mit­ted a mes­sage to a column in Gui­tar World magazine called “Dear Gui­tar Hero,” which al­lowed read­ers to ask fam­ous gui­tar­ists ques­tions. Months later, when I saw that Möt­ley Crüe’s Mick Mars had ac­tu­ally re­spon­ded to my query about how to blend blues gui­tar play­ing with met­al, I real­ized how much sat­is­fac­tion I got from ask­ing power­ful people ques­tions. John­Paul sug­ges­ted I get in­volved in mu­sic journ­al­ism, and my sopho­more year in high school, I signed up for my school news­pa­per.

BE­CAUSE WE AS a coun­try tend to talk about aut­ism in the con­text of chil­dren—how to dia­gnose them and how to pre­vent them from hav­ing aut­ism in the first place—it’s easy to for­get just how many chal­lenges await adults with aut­ism.

The chal­lenges, of course, vary de­pend­ing on nu­mer­ous factors—for in­stance, wheth­er someone is or isn’t verbal. Ari Ne’eman, pres­id­ent of the Aut­ist­ic Self Ad­vocacy Net­work (AS­AN), told me there is no defin­it­ive data on who is verbal and non­verbal. The 2008–2009 Na­tion­al Core In­dic­at­ors Con­sumer Sur­vey Re­port had a data set that looked at adults with aut­ism in the de­vel­op­ment­al-dis­ab­il­ity ser­vice sys­tem; 62 per­cent of people in the data set were able to speak. “However, that data set only en­com­passes aut­ist­ic people who have a level of impair­ment suf­fi­cient to qual­i­fy for Medi­caid home and com­munity-based ser­vices or in­sti­tu­tion­al care, so it ex­cludes large seg­ments of the aut­ist­ic com­munity,” Ne’eman told me. “The real num­ber of people who speak is likely much high­er than that.”

For those who are non­verbal, the adult world can be es­pe­cially tough to nav­ig­ate. But even for those like me with high-func­tion­ing aut­ism, there are plenty of obstacles. Last year, the A.J. Drexel Aut­ism In­sti­tute re­leased a re­port show­ing that just 19 per­cent of young adults with aut­ism have lived in­de­pend­ently from their par­ents, com­pared with 80 per­cent of young people with learn­ing dis­ab­il­it­ies. The re­port also found that more than one-third of adults in their early 20s with aut­ism were “dis­con­nec­ted,” mean­ing they were not con­tinu­ing edu­ca­tion or hold­ing a job after high school. “Young people in the aut­ism cat­egory, gen­er­ally they are worse than their peers who have oth­er kinds of dis­ab­il­it­ies in terms of em­ploy­ment and a range of oth­er out­comes,” Paul Shat­tuck, an as­so­ci­ate pro­fess­or at Drexel Uni­versity School of Pub­lic Health and an au­thor of the re­port, told me.

One reas­on for this is that job in­ter­views aren’t easy for those on the spec­trum. “You can’t really fully pre­dict what the oth­er per­son is go­ing to do, and you have to kind of main­tain con­nec­tion and con­tact,” says Ed­ward Brodkin, dir­ect­or of the Adult Aut­ism Spec­trum Pro­gram at the Uni­versity of Pennsylvania’s Perel­man School of Medi­cine. Mak­ing eye con­tact, know­ing whose turn it is to speak, ori­ent­ing one’s body to the oth­er per­son, main­tain­ing a con­ver­sa­tion—all these things can be dif­fi­cult.

Ac­cord­ing to the Drexel re­port, “Over half of young adults with aut­ism re­ceived no vo­ca­tion­al or life skills ser­vices dur­ing their early 20s.” “We just do not do a very good job of sup­port­ing ad­oles­cents and adults in de­vel­op­ing the skills they need and giv­ing them the op­por­tun­it­ies they need to be suc­cess­fully em­ployed and live in­de­pend­ently,” says Dav­id Man­dell, dir­ect­or of the Cen­ter for Men­tal Health Policy and Ser­vices Re­search at the Perel­man School. Or, as Ju­lia Bascom, deputy ex­ec­ut­ive dir­ect­or at AS­AN, puts it: “The real­ity is that aut­ist­ic people spend the vast ma­jor­ity of our lives as adults, and we re­ceive the vast ma­jor­ity of fund­ing when we’re chil­dren, par­tic­u­larly when we’re young chil­dren.”

If you’ve met one person with autism, you’ve met one person with autism. 

I was lucky in that I did not be­come “dis­con­nec­ted”; after high school, I en­rolled in Chaf­fey Col­lege, a com­munity col­lege with a cam­pus near home. But around that time, I did ex­per­i­ence an­oth­er prob­lem com­mon to adults with aut­ism: de­pres­sion. My life felt like it was full of speed bumps: I was de­pressed that I would be lan­guish­ing in what many per­ceived as “13th grade” or “high school with ash­trays”; in ad­di­tion, in the span of two years, my mom was hos­pit­al­ized twice, John­Paul left Cali­for­nia, and my mom and Bob broke up.

Re­la­tion­ships posed an­oth­er chal­lenge—and provided more fuel for my de­pres­sion. At school, I met a wo­man and told her I was on the spec­trum; she replied that she knew im­me­di­ately be­cause she had worked with chil­dren with aut­ism.

I couldn’t be­lieve there was a beau­ti­ful neur­o­typ­ic­al wo­man who genu­inely en­joyed my com­pany. But she wanted to re­main friends while I wanted more. I hoped if I was nice enough or per­formed enough kind ges­tures to­ward her, she would come around. I be­came over­bear­ing, hop­ing for some re­cipro­city. In a way, she be­came one of my­op­ic in­terests.

I now know that is not how re­la­tion­ships work; they re­quire both people be­ing mu­tu­ally in­ter­ested and want­ing to sup­port each oth­er’s en­deavors. But at the time, it all built to an ex­plo­sion that left me shattered and heart­broken.

In spiral­ing in­to de­pres­sion, I was not alone: A 2014 study pub­lished in The Lan­cet Psy­chi­atry sur­veyed 374 adults in Eng­land who were dia­gnosed with As­per­ger’s syn­drome—and found that their life­time ex­per­i­ence of sui­cid­al ideation was nine times high­er than the gen­er­al pop­u­la­tion in Eng­land. In the sur­vey, 243 of 367 people self-re­por­ted ideation of sui­cide and 127 of 365 self-re­por­ted plans or at­tempts of sui­cide.

The people in the study were dia­gnosed as adults. “Thus,” the study said, “many of these in­di­vidu­als had dif­fi­culties such as so­cial ex­clu­sion, un­ful­filled edu­ca­tion­al po­ten­tial, dif­fi­culties with get­ting or keep­ing a job or be­ing pro­moted, and dif­fi­culties with de­vel­op­ing close re­la­tion­ships, which could have been ex­acer­bated through lack of ap­pro­pri­ate sup­port throughout their lives. Delayed dia­gnos­is in adult­hood could pos­sibly be an­oth­er risk factor for sui­cid­al ideation and plans or at­tempts in people with As­per­ger’s syn­drome.”

Deal­ing with my de­pres­sion would prove to be a long-term struggle, one that I man­age to this day. Yet des­pite all of this, I ex­celled aca­dem­ic­ally at the com­munity col­lege. After my first year, I was re­com­men­ded for the hon­ors pro­gram, which I saw as my tick­et out of com­munity col­lege and maybe even out of Cali­for­nia. One of my friends in that pro­gram wanted to go in­to polit­ics, and I sug­ges­ted that she ap­ply for a White House in­tern­ship. She said she would ap­ply if I did. Not ex­pect­ing to be ac­cep­ted, I turned in the ap­plic­a­tion while she ul­ti­mately did not. In Novem­ber 2010, on a bus in between classes to get food, I got a phone call say­ing I had been ac­cep­ted. In Janu­ary, I packed my suit­cases to move to Wash­ing­ton.

MY DAD AC­COM­PAN­IED me to D.C., help­ing me move in­to in­tern hous­ing on Cap­it­ol Hill. After two days, he left—and I was on my own without any adults for the first time in my life.

As my in­tern­ship un­fol­ded, it proved to be the first time my vo­ra­cious love of polit­ics and policy no longer made me a so­cial out­cast—but was in­stead cel­eb­rated. Dur­ing Q&As, pro­fes­sion­al-de­vel­op­ment group meet­ings, or cas­u­al con­ver­sa­tions, my know­ledge of polit­ics was seen as an as­set. It made me at min­im­um a curi­os­ity and at best someone who could im­press my su­per­i­ors at work and my fel­low in­terns. They liked that I knew ran­dom facts about mem­bers of their con­gres­sion­al del­eg­a­tion or about the fo­cus of their re­spect­ive of­fices.

Wash­ing­ton is a place where ob­ses­sions about par­tic­u­lar policies, or polit­ics in gen­er­al, can ad­vance ca­reers; in that sense, it’s a good place for those on the spec­trum. But liv­ing and func­tion­ing in Wash­ing­ton also comes with par­tic­u­lar dif­fi­culties. This is a city built on net­work­ing, and when I first got here, I was very re­luct­ant to do it. It wasn’t un­til my room­mates—also White House in­terns—star­ted in­vit­ing me to parties or brunch dates with our col­leagues that I began feel­ing safe in so­cial set­tings.

Eliza­beth Laugeson—an as­sist­ant clin­ic­al pro­fess­or at UCLA and dir­ect­or of the UCLA PEERS pro­gram, which teaches ad­oles­cents and young adults on the spec­trum so­cial skills—told me that poor so­cial mo­tiv­a­tion is of­ten a prob­lem for people who are on the spec­trum. “Many people on the spec­trum tend to be more so­cially isol­ated. They’re less en­gaged with people through friend­ships or ro­mantic re­la­tion­ships, and it’s not ne­ces­sar­ily be­cause of a lack of de­sire to be so­cially en­gaged,” she ex­plains.

One of the ways AS­AN is work­ing to make some so­cial en­vir­on­ments more ac­cess­ible for people on the spec­trum is through a col­or-coded badge sys­tem. For ex­ample, someone can wear a green badge if they are in­ter­ested in speak­ing with a new per­son, a yel­low badge if they want to speak with only people they know, or a red badge if they are not in­ter­ested in speak­ing at all. Ne’eman told me that his group has had some suc­cess with the sys­tem at its galas, and there has been pro­gress in get­ting oth­er events to ad­opt the sys­tem.

But these kinds of solu­tions aren’t go­ing to hap­pen in most so­cial set­tings. Which means that Wash­ing­ton is al­ways go­ing to be a dif­fi­cult place for those with aut­ism to nav­ig­ate. To make Wash­ing­ton more ac­cess­ible, AS­AN spon­sors a pro­gram called Aut­ism Cam­pus In­clu­sion Sum­mer Lead­er­ship Academy, which brings col­lege stu­dents to Wash­ing­ton to learn skills like or­gan­iz­ing and poli­cy­mak­ing. “Very of­ten you get in­to a dy­nam­ic where a lot of folks, if they had the op­por­tun­ity to kind of spend a sum­mer or a year really im­mersed in a work­place that would be will­ing to give them a chance and that made ap­pro­pri­ate ac­com­mod­a­tions, [they] would be in a po­s­i­tion to suc­ceed,” Ne’eman says.

Ly­dia Brown—who star­ted the blog Aut­ist­ic Hoya as an un­der­gradu­ate at Geor­getown and who in­terned at AS­AN (she is now a law stu­dent at North­east­ern Uni­versity)—drives home this point: “What we really need are to build stronger sup­port net­works for aut­ist­ic people wheth­er they’re in D.C. or else­where, to provide the sup­port ne­ces­sary to get the op­por­tun­it­ies that who­ever among us have got­ten,” she says.

The im­port­ance of help­ing people on the spec­trum to find their way in Wash­ing­ton can­not be stressed enough. People on the spec­trum’s ac­cess to so­cial cap­it­al is already lim­ited as is. But not hav­ing a means to ac­cess polit­ic­al cap­it­al means that, too of­ten, polit­ic­al rhet­or­ic is shaped not by us but by oth­ers act­ing on our be­half.

THE QUES­TION OF who should speak for those with aut­ism is a di­vis­ive one in the aut­ism-ad­vocacy com­munity. And it’s linked to oth­er philo­soph­ic­al di­vi­sions—chief among them wheth­er aut­ism is a dis­ease to be cured or more of a civil rights is­sue. “In the med­ic­al-mod­el view of dis­ab­il­ity, people who have a dis­abling con­di­tion, wheth­er it’s aut­ism or cereb­ral palsy or in­tel­lec­tu­al dis­ab­il­ity, these people are broken and they need to be fixed,” says Shat­tuck, con­trast­ing this ap­proach with the mod­el that came out of the dis­ab­il­ity-rights move­ment—which fo­cuses on lob­by­ing so­ci­ety to do more to ac­com­mod­ate minor­ity groups, such as those with aut­ism or any oth­er dis­ab­il­ity.

Some act­iv­ists con­tend that the best known aut­ism ad­vocacy or­gan­iz­a­tion—Aut­ism Speaks, which was foun­ded in 2005 by former CEO and Chair­man of NBC Uni­ver­sal Bob Wright and his wife, Su­z­anne Wright, who have a grand­son with aut­ism—fo­cuses ex­cess­ively on find­ing a cure and not enough on the civil rights ap­proach. On the oth­er side of the scale is the Aut­ist­ic Self Ad­vocacy Net­work. Its slo­gan—“Noth­ing About Us Without Us”—makes clear where it stands.

Too often, political rhetoric is shaped not by those with autism but by others acting on our behalf. 

AS­AN talks about aut­ism very much in the con­text of civil rights. (“The his­tory of Amer­ica, par­tic­u­larly over the last 100 years, has been a his­tory of grow­ing re­cog­ni­tion of di­versity and ac­cept­ance,” Ne’eman, the group’s pres­id­ent, told me.) And it cri­ti­cizes Aut­ism Speaks for fail­ing to suf­fi­ciently in­volve those with aut­ism. “The aut­ist­ic com­munity as a whole isn’t fo­cused on cure, but that’s what Aut­ism Speaks is fo­cused on,” Bascom told me. “You can see that, in about every in­stance, it really boils down to: There are no aut­ist­ic people in po­s­i­tions of lead­er­ship in Aut­ism Speaks.”

It ap­pears to be true that no one with aut­ism serves on the Aut­ism Speaks board, but the or­gan­iz­a­tion says those with aut­ism have sub­stan­tial in­volve­ment in its work. “Every mem­ber of the Aut­ism Speaks board is per­son­ally af­fected by aut­ism,” the group said via email. “We would wel­come a per­son with aut­ism on our board. We have staff mem­bers with aut­ism in im­port­ant po­s­i­tions and serving on our board ad­vis­ory com­mit­tees.” The state­ment also noted that many people with aut­ism con­trib­ute to the group’s web­site, speak at events, and vo­lun­teer at walks: “Their voices play a sig­ni­fic­ant role in shap­ing the pri­or­it­ies and mis­sion of Aut­ism Speaks.”

In an in­ter­view, Stu­art Spiel­man—seni­or policy ad­viser at Aut­ism Speaks, who has a 21-year-old son with non­verbal aut­ism—noted the im­port­ance of sci­ence and re­search. “We are still work­ing to­wards a fun­da­ment­al un­der­stand­ing of the bio­logy of aut­ism,” he said. “And that’s very, very im­port­ant if we’re go­ing to be think­ing about thera­peut­ics.” But he also said that at­ten­tion needs to be paid to the sorts of is­sues that would help those with aut­ism to live ful­filling lives—that is, is­sues like edu­ca­tion, em­ploy­ment, safety, and poverty, which tend to an­im­ate more civil-rights-ori­ented folks. “The chal­lenge with aut­ism,” he says, “is that we are really talk­ing about so many dif­fer­ent things and so many dif­fer­ent kinds of in­di­vidu­als, and what is im­port­ant to one per­son may be less im­port­ant to an­oth­er.”

Robison, who was dia­gnosed as be­ing on the spec­trum at age 40, has been a crit­ic of Aut­ism Speaks. He sat on the group’s sci­ence and treat­ment ad­vis­ory boards, but resigned in 2013 after Su­z­anne Wright pub­lished an op-ed say­ing the United States has let fam­il­ies “split up, go broke and struggle” be­cause of aut­ism. “These fam­il­ies are not liv­ing,” she wrote. “They are ex­ist­ing.”

“That’s a tagline for fun­drais­ing,” Robison told me. “But I think that, if you’re lead­ing an or­gan­iz­a­tion that rep­res­ents aut­ist­ic people and you say things like that, you have to re­cog­nize the power­fully cor­ros­ive ef­fect that will have on the psyches of par­tic­u­larly young people who are them­selves aut­ist­ic.”

An­oth­er di­vide between Aut­ism Speaks and AS­AN has to do with ap­plied-be­ha­vi­or ana­lys­is, or ABA, which is meant to teach people on the aut­ism spec­trum ba­sic skills—from learn­ing how to make eye con­tact to things like us­ing the re­stroom. “It breaks the learn­ing down in­to small pieces and al­lows learn­ing one piece at a time,” Kar­en Fes­sel, founder and ex­ec­ut­ive dir­ect­or of the Aut­ism Health In­sur­ance Pro­ject, told me. Aut­ism Speaks sup­ports ABA, but Bascom and Ne’eman have their con­cerns about it. Says Ne’eman: “ABA tends to be more fo­cused on try­ing to make aut­ist­ic chil­dren look and act nor­mal rather than im­prov­ing qual­ity of life.”

OF COURSE, none of these ap­proaches are mu­tu­ally ex­clus­ive. The med­ic­al mod­el and the civil rights mod­el can co-ex­ist. So, too, can the no­tion of help­ing those with aut­ism to bet­ter in­ter­act with neur­o­typ­ic­als, while also ask­ing the rest of the world to do more to ac­com­mod­ate us.

But it’s this last idea—ask­ing the cul­ture as a whole to change—that may be the toughest thing to ac­com­plish. For Dav­id Black, this would mean, in part, par­ents shift­ing their paradigm and mak­ing peace with the fact that your “16-year-old boy isn’t ne­ces­sar­ily the child that you dreamed he would be be­fore he was born.”

There have already been some note­worthy cul­tur­al at­tempts to de-stig­mat­ize aut­ism. In Oc­to­ber, for in­stance, Ses­ame Street un­veiled a new Mup­pet with aut­ism named Ju­lia. Along with the Mup­pet, there is also a web­site and app with nu­mer­ous fea­tures about aut­ism. Pri­or to a con­gres­sion­al brief­ing on early in­ter­ven­tion and the new Mup­pet in late Oc­to­ber, Sher­rie West­in, ex­ec­ut­ive vice pres­id­ent of glob­al im­pact and phil­an­thropy at Ses­ame Work­shop, told me that the pro­ject was three years in the mak­ing and brought to­geth­er 14 dif­fer­ent groups fo­cused on aut­ism, in­clud­ing both AS­AN and Aut­ism Speaks. “These are groups that don’t al­ways agree, but at Ses­ame Street we were able to con­vene all of these groups to­geth­er be­cause they un­der­stood this is not about cause or cure or any of the is­sues that may cause con­tro­versy,” she said.

Per­haps the biggest thing that people with aut­ism can do to change the cul­ture is to simply come out. Not only can this help to change the way neur­o­typ­ic­al people see us, but it can help to em­power a young­er gen­er­a­tion of those with aut­ism as well. As Robison re­cently wrote in a blog post about aut­ism on col­lege cam­puses: “It’s time for neurodi­verse fac­ulty to come out, and stand as role mod­els for stu­dents and staff. Every­one knows how aut­ism, AD­HD, dys­lex­ia and oth­er neurodi­verse con­di­tions dis­able us as chil­dren. What we need to bal­ance that are suc­cess­ful adults who at­trib­ute their achieve­ments in part to neurodi­versity.”

The day after Don­ald Trump made his idi­ot­ic com­ments about aut­ism at one of the Re­pub­lic­an de­bates, I wrote on Twit­ter that, by speak­ing the way he did, “you are telling us we are a mal­ady.” A par­ent of a 12-year-old who is on the spec­trum con­tac­ted me in a dir­ect mes­sage and thanked me. “Know­ing real ex­amples of people w/ com­par­able chal­lenges who have found the kind of ca­reer she’d be in­ter­ested … in is just phe­nom­en­ally re­as­sur­ing,” he wrote.

WHILE I WAS in­tern­ing at the White House, I found out I had been ac­cep­ted to the Uni­versity of North Car­o­lina at Chapel Hill. When I re­turned to Cali­for­nia, I learned I had re­ceived enough fin­an­cial aid to at­tend.

I made few friends my first year at UNC and felt deeply isol­ated. It wasn’t un­til I be­came over­whelmed with the course load that I star­ted set­ting up reg­u­lar ap­point­ments with an aca­dem­ic coach, who was a spe­cial­ist in learn­ing dis­ab­il­it­ies, to map out my weeks and bet­ter man­age the stress.

Re­turn­ing to UNC for my second year, I made it a point that I would try and get in­volved with something. Since I was ma­jor­ing in journ­al­ism, I joined the cam­pus news­pa­per, The Daily Tar Heel. Dur­ing the 2012 elec­tion, I dove head­first in­to cov­er­ing North Car­o­lina polit­ics. By the end of my first semester at the news­pa­per, I knew I’d found my niche. And thanks to the pa­per, I built ca­marader­ie and friend­ships that per­sist to this day.

Dur­ing col­lege, I in­terned at The Amer­ic­an Pro­spect, and even­tu­ally, I landed a job at Na­tion­al Journ­al. For the most part, my em­ploy­ers have been pretty ac­cept­ing of cer­tain as­pects of me be­ing on the spec­trum as long as I de­liv­er in my work. And journ­al­ism has, over­all, proved to be a good fit for me. The nature of polit­ic­al journ­al­ism is ask­ing power­ful people ques­tions to eli­cit an­swers and, hope­fully, get them to say something they shouldn’t have said. I have found that my pen­chant for blunt­ness and my ut­ter in­ab­il­ity to tol­er­ate spin has made me more will­ing to be for­ward in de­mand­ing an­swers.

This isn’t to say all of my prob­lems have been solved. I still take medi­cine for de­pres­sion and for Tour­ette’s. And when I go back home to Cali­for­nia, I see the same psy­chi­at­rist I saw for years for my pre­scrip­tion. I also reg­u­larly see a ther­ap­ist here in Wash­ing­ton. In ad­di­tion, I ab­stain from al­co­hol and do not drive.

AS I WRITE this para­graph, I am sit­ting in my din­ing room on a Sunday even­ing listen­ing to Stevie Won­der’s Songs in the Key of Life al­bum, oc­ca­sion­ally tak­ing breaks to dance by my­self. The night be­fore, I’d gone to see him per­form the al­bum live in con­cert with Maddy, one of my friends from col­lege who now works in D.C.

Earli­er in the day, Maddy and I had brunch with three of our oth­er friends—one of whom is my room­mate and an­oth­er of whom is also on the spec­trum. (From what I know, most of my friends are neur­o­typ­ic­al, though I am friends with some people on the spec­trum.) We all met work­ing on The Daily Tar Heel. We talked about our work, re­min­isced about our col­lege days, and our tri­als and er­rors in dat­ing, like any oth­er group of people. There are times when I make so­cial hic­cups or I don’t real­ize when someone is jok­ing and I need cla­ri­fic­a­tion. But over­all, I can’t help but think how for­tu­nate I am.

I know that my life isn’t for every­one and that my ver­sion of aut­ism isn’t uni­ver­sal. There are many with daily struggles that are much tough­er than my own. But as I re­flect on my for­tune, all I hope is that so­ci­ety can stop think­ing of aut­ism ex­clus­ively as a dis­ease—and start pay­ing at­ten­tion to how the ac­tu­al lives of those with aut­ism are un­fold­ing. Those of us with aut­ism want simply to live the most ful­filling lives we can. Some of us might wel­come a cure, but some of us are more than con­tent with who we are. And we all de­serve our own pur­suit of hap­pi­ness. 


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