Hun­dreds of thou­sands of girls with autism are un­di­ag­nosed – top sci­en­tist

The Guardian - - NEWS - Han­nah Devlin Science correspondent

Hun­dreds of thou­sands of girls and women with autism are go­ing un­di­ag­nosed be­cause it is viewed as a “male con­di­tion”, ac­cord­ing to a lead­ing neu­ro­sci­en­tist.

Prof Francesca Happé, di­rec­tor of the So­cial, Ge­netic & De­vel­op­men­tal Psy­chi­a­try Cen­tre at King’s Col­lege Lon­don, warned that the fail­ure to recog­nise autism in girls and women was in­flict­ing a stark toll on their men­tal health.

“We’ve over­looked autism in women and girls and I think there’s a real gen­der-equal­ity is­sue here,” Happé said. “I think we are miss­ing large num­bers and mis­di­ag­nos­ing them too.”

Un­til re­cently, autism with­out in­tel­lec­tual im­pair­ments, some­times called Asperger syn­drome, was thought to pre­dom­i­nantly af­fect boys and men, at a ra­tio of 10 to ev­ery one woman.

How­ever, there is grow­ing ev­i­dence that the num­ber of girls and women with the con­di­tion may have been vastly un­der­es­ti­mated.

Re­cent re­search, based on ac­tive screen­ing rather than clin­i­cal or school records, found a ra­tio of 3:1. Happé and oth­ers be­lieve this could fall fur­ther – po­ten­tially as low as 2:1 – as di­ag­nos­tic pro­cesses be­come bet­ter tai­lored to iden­ti­fy­ing autism in girls and women.

As a re­sult of early as­sump­tions about autism mostly af­fect­ing men, stud­ies have of­ten re­cruited ma­le­only co­horts. Male par­tic­i­pants in brain-imag­ing stud­ies on autism out­num­ber fe­males by eight to one, and in ear­lier re­search the bias was even more pro­nounced.

“What we think we know about autism from re­search is ac­tu­ally just what we know about male autism,” said Happé, who has a £500,000 grant to in­ves­ti­gate gen­der dif­fer­ences in autism spec­trum dis­or­ders.

More re­cent work sug­gests that there may be sub­tle dif­fer­ences in how autism ap­pears in girls and women. Nar­row spe­cial in­ter­ests may su­per­fi­cially ap­pear more main­stream (horses or boy­bands, say, rather than elec­tric­ity py­lons) – al­though the na­ture of the in­ter­est would still be un­usual in terms of per­sis­tence and nar­row­ness.

Girls and women with autism also tend to be more adept at mask­ing their autis­tic traits. “They might pick a pop­u­lar girl in their class or work­place and study them and copy them,” said Happé.

The idea that autism could be a re­sult of hav­ing an “ex­treme male brain” as a re­sult of hor­monal dif­fer­ences has dom­i­nated pop­u­lar nar­ra­tives about the bi­ol­ogy driv­ing the con­di­tion, though Happé said that the the­ory re­mained sci­en­tif­i­cally con­tentious.

Por­tray­als of autism in the me­dia, such as the film Rain Man, have also been al­most ex­clu­sively male. So par­ents, teach­ers and clin­i­cians tend to be less in­clined to con­sider autism as a likely ex­pla­na­tion for girls and women strug­gling with so­cial and com­mu­ni­ca­tion prob­lems.

The fail­ure to di­ag­nose autism is of con­cern be­cause many of those af­fected suf­fer sec­ondary men­tal health is­sues such as anx­i­ety, de­pres­sion and self-harm.

A small study last year found that 23% of women hos­pi­talised for anorexia met the di­ag­nos­tic cri­te­ria for autism. More work is needed to con­firm the find­ings, based on 60 women, and to gauge whether the women’s so­cial and com­mu­ni­ca­tion dif­fi­cul­ties pre­dated their eat­ing dis­or­der.

“If clin­i­cians don’t have autism in mind when they see an eat­ing dis­or­der, they stop there,” she said. Many peo­ple find a di­ag­no­sis help­ful in mak­ing sense of why they feel “dif­fer­ent” and in find­ing ac­cep­tance and un­der­stand­ing from fam­ily and friends.

Han­nah Belcher, an autism re­searcher at Anglia Ruskin Uni­ver­sity who was di­ag­nosed with the con­di­tion as an adult, said she suf­fered from anx­i­ety as a child and stopped go­ing to school at the age of 14 be­cause she was strug­gling to cope.

“It was only when I was 23 that I saw an art ther­a­pist who sug­gested I was pos­si­bly autis­tic,” she said. “I am cer­tain I would have gained more sup­port around my anx­i­ety as a child, and would have suf­fered from less men­tal health dif­fi­cul­ties had I had the di­ag­no­sis ear­lier.

“I also masked my autis­tic traits a lot, and I think­ing know­ing and un­der­stand­ing what these were would have en­abled me to be my­self more.”

The NHS es­ti­mates there are about 700,000 peo­ple on the autism spec­trum in Bri­tain, based on a roughly 10:1 gen­der ra­tio. If the real ra­tio were shown to be 3:1 or 2:1, this would sug­gest that up to 300,000 girls and women with autism have been omit­ted from the na­tional tally. Carol Povey, di­rec­tor of the Na­tional Autis­tic So­ci­ety’s Cen­tre for Autism, said there was grow­ing recog­ni­tion of the is­sue, with a steady in­crease in re­fer­rals of women and girls to spe­cial­ist di­ag­nos­tic cen­tres dur­ing the past few years.

“Re­cent re­search sug­gests that the num­ber of males and fe­males on the autism spec­trum is far more equal than pre­vi­ously thought and di­ag­nos­tic statis­tics sug­gest,” she said. “The prob­lem is that pro­fes­sion­als of­ten don’t un­der­stand the dif­fer­ent ways autism can man­i­fest in women and girls, with many go­ing through their lives with­out a di­ag­no­sis and an un­der­stand­ing of why they feel dif­fer­ent.”

‘The prob­lem is that pro­fes­sion­als of­ten don’t un­der­stand the dif­fer­ent ways autism can man­i­fest in women and girls’

Carol Povey

Na­tional Autis­tic So­ci­ety

PHO­TO­GRAPH: RAWPIXEL/GETTY

As a re­sult of early as­sump­tions that autism mostly af­fected men, stud­ies of­ten didn’t in­clude women

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