Why does it take so long to get autism di­ag­no­sis?


Harefield Gazette - - NEWS - Lo­cal Democ­racy Reporter

PAR­ENTS are com­plain­ing of wait­ing as long as five years for an autism di­ag­no­sis for their child, and are grap­pling with a “post­code lot­tery”, ac­cord­ing to the ad­vo­cate mum be­hind Hillingdon Manor School .

The con­cerns were re­vived after West­min­ster’s lo­cal au­thor­i­ties pub­lished its wait­ing lists on May 24, find­ing fam­i­lies in the cen­tral Lon­don bor­ough were wait­ing as long as a year for di­ag­no­sis, de­spite wait­ing time guide­lines of three months.

A North West Lon­don Col­lab­o­ra­tion of Clin­i­cal Com­mis­sion (NWLCCC) Groups spokes­woman said while the wait­ing times were “longer than we would like,” it was lower than the av­er­age na­tional wait­ing time av­er­age es­ti­mated by a par­en­tre­ported sur­vey at 3.6 years.

The Govern­ment has yet to ful­fil Health Sec­re­tary Jeremy Hunt ‘s vow to look at start­ing to of­fi­cially record the fig­ures.

There were com­plex rea­sons for the delays, in­clud­ing in­creased demand for the as­sess­ment which had in­creased “sig­nif­i­cantly” in the last few years due to wider aware­ness about autism, the NWLCCC spokes­woman said.

More fam­i­lies may be­lieve their chil­dren are on the spec­trum.

Health­care pro­fes­sion­als were also more knowl­edge­able and bet­ter trained to de­tect the signs.

Once re­ferred, the process in­cluded com­plex, hours-long as­sess­ments from paediatric con­sul­tants and clin­i­cal psy­chol­o­gists, the spokes­woman said.

The NWLCCC was de­ter­mined to ad­dress the back­log: “We are work­ing col­lab­o­ra­tively with the lo­cal author­ity to pri­ori­tise this area at a strate­gic level, with many steps be­ing taken to im­prove the wait­ing times for pa­tients in North West Lon­don.”

Those steps in­cluded the in­tro­duc­tion of spe­cial clin­ics de­signed to shorten slots for the longer ap­point­ments, and us­ing can­cel­la­tion lists.

After Anna Kennedy’s two sons were turned away from main­stream ed­u­ca­tion, she and her hus­band re­mort­gaged their house to open Hillingdon Manor, a spe­cial­ist school for pupils liv­ing with autism spec­trum dis­or­ders.

The school be­gan with 19 pupils in 1999. Now her boys are adults it hosts about 190 stu­dents.

Hillingdon Manor pro­vides ed­u­ca­tion, spe­cial­ist ther­a­pies and psy­cho­log­i­cal treat­ment for young peo­ple aged 3 to 19, many of whom also have learn­ing dif­fi­cul­ties like dys­lexia.

Her char­ity, Anna Kennedy On­line, pre­vi­ously un­der­took a sur­vey of 2,000 par­ents, who re­ported an av­er­age wait­ing time from first re­port­ing con­cerns to pro­fes­sion­als, to di­ag­no­sis, of three to five years.

Anna Kennedy OBE has founded an autism spe­cial school and a char­ity

On Thurs­day (May 31) she asked her so­cial me­dia fol­low­ers how long they had waited for their child to re­ceive a di­ag­no­sis and was flooded with hun­dreds of mes­sages from frus­trated par­ents. They told of wait­ing times from any­where be­tween months to seven years.

She said the access to spe­cial needs ser­vices, which in­cludes an ed­u­ca­tional psy­chol­o­gist’s re­port and a lim­ited amount of free speech and lan­guage ther­apy on the NHS, ap­peared to be a “post­code lot­tery.”

She tweeted from her @An­naKennedy1 ac­count:

“I have had 200 mes­sages since 6pm yes­ter­day across #so­cial­me­dia about wait­ing for #autism di­ag­no­sis Our #char­ity sub­mit­ted re­sults of sur­vey 2000 replies sub­mit­ted to #DeptofHealth in 2013 Feels like #ground­hog­day par­ents shar­ing same con­cerns and wait times poss slightly worse!”

Wait­ing a long time for a di­ag­no­sis meant a win­dow for early in­ter­ven- tion could be missed, Kennedy said.

“It has an im­pact on the child, it has an im­pact on the school, which doesn’t know what they are deal­ing with. It has an im­pact on the sib­lings, and ob­vi­ously the fam­ily.”

While some par­ents she en­coun­tered over her years cam­paigned did avoid seek­ing a “la­bel”, oth­ers told her of be­ing dis­missed.

Some were told their chil­dren had be­havioural is­sues or that their par­ent­ing was poor, but then a di­ag­no­sis came many years down the track, she said.

One of Kennedy’s sons was di­ag­nosed by health pro­fes­sion­als at four, but the fam­ily was not in­formed and only learned about it by ac­ci­dent at school when he was seven.

“That was ob­vi­ously very stress­ful.”

A Na­tional Autism So­ci­ety (NAS) sur­vey found one in 10 par­ents said they ended up pay­ing for a pri­vate di­ag­no­sis.

Kennedy said go­ing pri­vate cost thou­sands of pounds, and left im­pov­er­ished fam­i­lies at a dis­ad­van­tage.

The gap in ser­vice was com­plex, and needed be ad­dressed na­tion­ally, she said.

“I think it’s to do with the cut­ting of ser­vices. I get that there’s only so much money. I can un­der­stand. But as the mother of chil­dren with autism – I don’t care. I care that they are get­ting in­ter­ven­tion as soon as pos­si­ble.”

Autism ad­vo­cate Anna Kennedy was flooded with mes­sages when she asked how long fam­i­lies waited for a di­ag­no­sis

Cam­paigner Anna Kennedy started the Hill­ng­don Manor school for chil­dren with autism spec­trum dis­or­ders

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