GIRL, IN­TER­RUPTED

Thought autism was a male con­di­tion? New re­search shuts down the stereo­type.

ELLE (Australia) - - Contents - WORDS BY LAU­REN SAMS

HE­LEN HOANG WAS 33 when her daugh­ter’s preschool teacher sug­gested the lit­tle girl might be on the autism spec­trum. “When she started talk­ing about the symp­toms, I thought, ‘Oh wow, that’s me.’” Hoang, the daugh­ter of worka­holic par­ents, says her fam­ily was “too tired to no­tice or care when I lis­tened to the first 17 sec­onds of Madonna’s ‘Papa Don’t Preach’ on re­peat for hours, or avoided the neigh­bour­hood chil­dren be­cause I didn’t know how to play with them.” But that con­ver­sa­tion with her daugh­ter’s teacher was some­thing of an “aha” mo­ment – it sent Hoang on a “jour­ney of ex­plo­ration” that re­sulted in her own di­ag­no­sis on the autism spec­trum at the age of 34.

“It was such a re­lief,” she says. “When I was told I was autis­tic, I felt highly val­i­dated. It was a re­lief to know I wasn’t alone.” While she was un­sure how her fam­ily would take the news – “I wor­ried they’d be dis­ap­pointed or ashamed, or worse, that they’d start to treat me dif­fer­ently” – her fears turned out to be un­founded.

Hoang has just re­leased her de­but novel, The Kiss Quo­tient, a love story be­tween an autis­tic woman, Stella, and her male sex worker (yes, it’s re­verse Pretty Woman, and yes, it’s very good). “In many ways, Stella’s jour­ney to self-ac­cep­tance par­al­leled mine,” she says. “Prior to my di­ag­no­sis, I put a great deal of ef­fort into chang­ing my­self to fit in, and get­ting to the point where I could be open about my dif­fer­ences and em­brace them was a strug­gle.”

Hoang is part of a grow­ing group of women di­ag­nosed later in life – that is, af­ter child­hood and ado­les­cence – with autism spec­trum dis­or­der (ASD). Autism has tra­di­tion­ally been thought of as a boy’s con­di­tion but it’s now es­ti­mated that 30 per cent of di­ag­noses are for girls. A his­toric whole­sale dis­missal of fe­male autism, lack of re­search, and the fact that di­ag­nos­tic and screen­ing tests are bi­ased to­wards boys, means girls have been chron­i­cally un­der­diag­nosed with ASD. It’s only now that women like Hoang are dis­cov­er­ing that they’ve lived on the autism spec­trum their en­tire lives. Co­me­dian Han­nah Gadsby, for in­stance, re­ceived her autism di­ag­no­sis in 2016, when she was 38. Pre­vi­ously told she had at­ten­tion de­fecit hyper­ac­tiv­ity dis­or­der, Gadsby was re­lieved to dis­cover she was autis­tic. “I’d al­ways ex­isted as if some­thing was fun­da­men­tally wrong with me,” she told The

Week­end Aus­tralian. “Autism gave me a sense of calm and a frame­work to un­der­stand that I’m not bro­ken, the world is.” And while Hoang and Gadsby’s di­ag­no­sis sto­ries end quite neatly – with an in­ter­na­tion­ally suc­cess­ful de­but novel and world­wide fame re­spec­tively – not every woman with ASD is so lucky.

It’s thought that autism af­fects around one in 150 Aus­tralians and, for the most part, our un­der­stand­ing of autism is through a very male lens. ASD is a de­vel­op­men­tal con­di­tion that af­fects the way peo­ple re­late to their en­vi­ron­ment. When we think of autism, we tend to pic­ture the Rain Man model, even 30 years af­ter the film’s re­lease: a bril­liant (male) sa­vant with ob­ses­sive quirks and fix­a­tions, who has trou­ble com­mu­ni­cat­ing. And while some peo­ple with autism might present this way, the re­al­ity is that the dis­or­der ex­ists on a spec­trum and there’s a wide va­ri­ety of ways in which autism can man­i­fest.

His­tor­i­cally, re­searchers have fo­cused on the ways autism man­i­fests in one seg­ment of the pop­u­la­tion: males, which is why

we have such a lim­ited un­der­stand­ing of what the dis­or­der ac­tu­ally is. For a long time, autism was lit­er­ally de­scribed as “an ex­treme male brain”. In 1944, pi­o­neer­ing re­searcher Hans Asperger went so far as to say women or girls weren’t af­fected by autism at all. It’s only now sci­en­tists are be­gin­ning to un­der­stand its breadth. It used to be thought the ra­tio of men with autism to women with autism was 15:1. New re­search says it’s ac­tu­ally closer to 3:1.

Danuta Bul­hak-pater­son is a psy­chol­o­gist who spe­cialises in work­ing with girls with ASD, and the au­thor of I Am An Aspie Girl:

A Book For Young Girls With Autism Spec­trum Con­di­tions. In her Mel­bourne prac­tice, she sees many women who are di­ag­nosed as adults af­ter a life­time of strug­gling with symp­toms. “For these women, be­ing di­ag­nosed is a re­lief. But it’s not like it’s all smooth sail­ing af­ter that; they’re deal­ing with decades of feel­ing mis­un­der­stood and dif­fer­ent. You can’t help but in­ter­nalise those feel­ings. Of­ten women I see are very anx­ious and some­times even de­pressed. They haven’t re­ceived the sup­port they need and feel very alone.” When symp­toms are missed or mis­di­ag­nosed it can be “very dis­tress­ing”, says Char­lotte Brown­low, a clin­i­cian ex­am­in­ing the suc­cess of a fe­male-spe­cific screen­ing tool. “It’s re­ally ex­haust­ing for these women to have to fig­ure the world out with­out any sup­port.” (One psy­chol­o­gist I spoke to says her client was told by a GP that she had an eat­ing dis­or­der be­cause she had to go to the same pizza place every Satur­day night, even when she moved an hour away from it.)

Stephanie*, 32, was di­ag­nosed last year af­ter more than 10 years won­der­ing if she had autism. When her mother died when Stephanie was 13, her fa­ther spi­ralled into deep de­pres­sion and she and her sis­ter were sent to fos­ter homes. With­out a con­stant pri­mary carer, Stephanie’s autism went un­di­ag­nosed for more than three decades, de­spite her be­ing un­able to fin­ish uni (“I couldn’t deal with the lights in the lec­ture hall; they would flicker con­stantly and it trig­gered my anx­i­ety”), un­able to be pro­moted in her job at a su­per­mar­ket deli counter (“Change is re­ally scary for me; I want to be pro­moted but I know I won’t be able to han­dle it”) or seek a healthy re­la­tion­ship (Stephanie was with an abu­sive part­ner un­til he died when she was 25). Like many peo­ple with autism, Stephanie finds it dif­fi­cult to cope with ex­ter­nal sen­sory trig­gers, like light, noise and crowded places. She runs up to 80 kilo­me­tres a week to deal with her anx­i­ety, and wears head­phones and dark glasses in pub­lic to avoid what she calls a “melt­down”. Fi­nally, last year she got to a point where she “couldn’t live life nor­mally any­more”, so she sought out As­pect, an autism aware­ness and sup­port body in Syd­ney, and re­ceived her di­ag­no­sis. “It was a huge re­lief,” she says. “But I wish it had come ear­lier. Maybe if my mum hadn’t died she would have picked up on it, and I’d have had some sup­port. I just feel so lonely. I’d like to have a re­la­tion­ship and maybe kids, but I can’t even speak to peo­ple most days. I don’t know if any of that is go­ing to hap­pen for me.”

Sup­port and early in­ter­ven­tion, says Professor Robyn Young of Flin­ders Univer­sity, are key to those liv­ing with autism (she should know: Young de­vel­oped a screen­ing tool for autism that can be used in in­fants as young as 12 months). “What we want to do with peo­ple with autism is help them live nor­mal lives. Early in­ter­ven­tion means they can learn to nav­i­gate their worlds.” This could range from speech ther­apy, Young says, to help them un­der­stand sar­casm, id­ioms, me­taphors and hu­mour, to oc­cu­pa­tional ther­apy for reg­u­lat­ing sen­sory be­hav­iours (like repet­i­tive move­ments) or coun­selling to mod­ify in­ap­pro­pri­ate be­hav­iour. “With­out those in­ter­ven­tions, girls with autism are left to fig­ure all of this out for them­selves, and that is in­cred­i­bly dif­fi­cult,” says Young. “It’s hard to do it even with sup­port. It’s close to im­pos­si­ble to do it on your own.”

One way girls with autism cope is by mask­ing their symp­toms, and mim­ick­ing neu­rotyp­i­cal girls to dis­guise their own be­hav­iour. “I dis­tinctly re­call do­ing this,” says Hoang. “I hated to call at­ten­tion to my­self, so when I re­alised my fin­ger tap­ping was an­noy­ing, I started tap­ping my teeth to­gether be­cause no­body could see or hear it.” She also re­calls hear­ing that, around the on­set of pu­berty, it was nor­mal for girls to spend more time in the bath­room. “That made per­fect sense to me,” she says. “I fig­ured they were do­ing the same thing as me: prac­tis­ing their fa­cial ex­pres­sions in the bath­room mir­ror to make sure they were do­ing it right.” Brown­low, the clin­i­cian work­ing on a screen­ing tool specif­i­cally for women and girls, says she’s not sure why girls tend to hide their symp­toms bet­ter than boys. “I think it has some­thing to do with the way we teach all girls to mod­ify their be­hav­iour in all sorts of sit­u­a­tions.”

Things are chang­ing, slowly. This year’s World Autism Aware­ness Day fo­cused on fe­males, while new re­search into screen­ing shows key dif­fer­ences be­tween how gen­ders present with ASD (women typ­i­cally have more sen­sory dif­fer­ences and mo­tor prob­lems). Brown­low says there’s now greater em­pha­sis on its ben­e­fits. “Autis­tic peo­ple are of­ten very de­tail-fo­cused, with great mem­ory and ob­ser­va­tion skills. By iden­ti­fy­ing those strengths early and giv­ing autis­tic peo­ple sup­port to nav­i­gate their en­vi­ron­ments, we can en­able them to shine.”

For many women, find­ing out they’re on the spec­trum of­fers them a form of iden­ti­fi­ca­tion they didn’t know they needed. “Autism is such a strong, pow­er­ful part of an iden­tity,” says Brown­low. “Un­der­stand­ing that part of your­self, and then be­ing able to give your­self a break for things you can’t con­trol, is so im­por­tant. I hear from so many women who tell me that hav­ing a frame of ref­er­ence for the rea­sons they are dif­fer­ent re­ally helps them. But it would have helped a lot more if they’d got it sooner.”

“l’d like to have a RE­LA­TION­SHIP and maybe kids, but I can’t even SPEAK TO PEO­PLE most days”

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