Autis­tic chief speaks out over im­pact of pan­demic

The Daily Telegraph - Business - - Front Page - By Michael O’Dwyer

‘I can’t be sure if I’m go­ing to get dis­crim­i­nated against … There will be boards who would not be tak­ing me’

ONE of the UK’s lead­ing busi­ness lob­by­ists has re­vealed pub­licly that she is autis­tic in an ar­ti­cle for The Daily Tele­graph.

Char­lotte Valeur, chair­man of the In­sti­tute of Di­rec­tors, is back­ing a cam­paign by Au­tis­tica, a char­ity, to raise money to re­search how coro­n­avirus has af­fected autis­tic peo­ple.

Ms Valeur said she de­cided to speak out be­cause of the po­ten­tial con­se­quences for autis­tic peo­ple of the up­heaval caused by the pan­demic.

Daily rou­tines used by many autis­tic peo­ple to re­duce un­pre­dictabil­ity have been up­ended by lock­down, the use of face masks and the lack of clar­ity on so­cial dis­tanc­ing rules.

Only 16pc of autis­tic peo­ple were in full-time em­ploy­ment be­fore the pan­demic and it is feared the fig­ure will fall dur­ing the cri­sis. The for­mer in­vest­ment banker, who was a di­rec­tor of the BT Pen­sion Fund and en­gi­neer­ing firm Laing O’Rourke, said there was a lack of un­der­stand­ing of autism in busi­ness.

She fears that by go­ing pub­lic, she could lose job op­por­tu­ni­ties. She said: “I can’t be sure if I’m go­ing to get dis­crim­i­nated against be­cause of this … There will be boards who would be not tak­ing me be­cause of this and I have to be pre­pared for that.”

Ms Valeur said that in an un­suc­cess­ful in­ter­view for one board role she was asked how she would deal with the need for em­pa­thy, a ques­tion that ap­peared to be rooted in a mis­con­cep­tion that autis­tic peo­ple lack em­pa­thy.

“I just don’t know where that [ques­tion] came from, other than they felt very un­com­fort­able with me,” she said.

Ms Valeur, who was bul­lied in­ces­santly and beaten up as a child, said that be­ing on the autism spec­trum af­fected how she worked and that she did not feel com­fort­able net­work­ing at drinks events, for ex­am­ple.

The UK’s 700,000 autis­tic ci­ti­zens were al­ready dis­ad­van­taged be­fore coro­n­avirus. Now too many face a bleak fu­ture with much of the lim­ited progress made in re­cent years threat­en­ing to go into re­verse.

As autis­tic lead­ers in busi­ness and the char­ity world, we know only too well how many on the autism spec­trum are marginalis­ed, ne­glected and over­looked, de­spite the ben­e­fits that many autis­tic ci­ti­zens can bring to busi­ness and so­ci­ety. Out­comes are un­ac­cept­able: re­search shows that peo­ple with a di­ag­no­sis of autism face low ed­u­ca­tional at­tain­ment rel­a­tive to their po­ten­tial, one of the high­est rates of un­em­ploy­ment in so­ci­ety de­spite of­ten be­ing highly qual­i­fied, much higher rates of early death, poor men­tal and phys­i­cal health, and very lim­ited so­cial in­clu­sion.

Giv­ing autis­tic peo­ple the same op­por­tu­ni­ties that neu­rotyp­i­cal peo­ple en­joy would ben­e­fit all of us.

We have both wres­tled with the chal­lenge of de­cid­ing when to be open about our di­ag­no­sis and how we might be dis­ad­van­taged by so­ci­ety’s out­dated at­ti­tudes. We’ve both been at the fore­front of ef­forts to in­crease autis­tic rep­re­sen­ta­tion in the board­room and the work­force, be­cause we know just how bril­liantly the autis­tic brain can find new so­lu­tions.

Be­ing autis­tic has given us both an im­mense amount of cre­ativ­ity, drive and fo­cus. Just as with the other crit­i­cal con­ver­sa­tions hap­pen­ing now around di­ver­sity, if com­pa­nies ac­tively em­brace neu­ro­di­ver­sity, it’s not just about do­ing good as an em­ployer: it’s good for team per­for­mance and the bot­tom line.

In re­sponse to high-pro­file scan­dals and ne­glect, the NHS and the Gov­ern­ment have be­gun to at­tach more im­por­tance to autism in re­cent years, mak­ing it a na­tional pri­or­ity for the health ser­vice and com­mit­ting to a new na­tional autism strat­egy.

But the sheer scale of the chal­lenge re­mains huge and both the pan­demic and an in­suf­fi­cient fo­cus on autism dur­ing the re­cov­ery threaten to undo that slow and painful progress.

We are call­ing on the Gov­ern­ment and busi­ness lead­ers to help us change

‘Autis­tic peo­ple and their fam­i­lies must have an equal right and ac­cess to high-qual­ity re­search’

decades of ne­glect and sup­port a strate­gic ap­proach to how we iden­tify, sup­port and care for autis­tic peo­ple, right across the spec­trum.

As we fo­cus on build­ing a stronger, more car­ing so­ci­ety, we want the rights of autis­tic peo­ple to be un­der­stood, val­ued and pro­tected.

This is no longer optional, or just nice to have. Re­search con­ducted dur­ing lock­down shows many peo­ple with an autism di­ag­no­sis are re­port­ing se­ri­ous de­te­ri­o­ra­tion in their men­tal health, with many ex­tremely anx­ious and de­pressed, and grow­ing num­bers self-harm­ing and ap­pear­ing to be at even greater risk of sui­cide than be­fore.

While many of us are hope­ful about a re­turn to the new nor­mal, large num­bers of autis­tic peo­ple and their fam­i­lies are fear­ful of the fu­ture.

There was al­ready a lack of ac­cess to much-needed men­tal health ser­vices and we hear that since March, that has got worse.

Only 16pc of di­ag­nosed autis­tic peo­ple were in full-time work be­fore Covid-19; our fear is that this al­ready un­ac­cept­able em­ploy­ment gap will widen. Finding the so­lu­tions to long-stand­ing struc­tural in­equal­i­ties faced by autis­tic peo­ple and their novel prob­lems caused by coro­n­avirus can’t be based on guess­work or good in­ten­tions. For most peo­ple and for most con­di­tions, just as we’ve seen with Covid-19, we don’t ac­cept best guesses. We de­mand ev­i­dence and we rapidly create the struc­tures for gen­er­at­ing it.

Autis­tic peo­ple and their fam­i­lies must have an equal right and ac­cess to high-qual­ity re­search, ev­i­dence and data, in­formed by their views and ex­pe­ri­ences. This is ab­so­lutely crit­i­cal to build­ing back bet­ter and well within our reach as a so­ci­ety.

Au­tis­tica’s new Know More fund will back ur­gent new re­search, co-de­signed with autis­tic peo­ple, to en­sure that we aren’t fur­ther marginalis­ed af­ter the pan­demic, and that ser­vices and sys­tems are de­vel­oped to meet ev­ery­one’s needs.

It is our duty as ci­ti­zens to know more about autism and autis­tic peo­ple’s ex­pe­ri­ences.

No more scan­dals in care homes. No more abuse and ne­glect. No more needs and rights un­met. No more tal­ent wasted. No more lives lived in the mar­gins. It’s time to Know More.

Com­pa­nies in the City of Lon­don and else­where could ben­e­fit from more neu­ro­di­ver­sity

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