New Asperger’s Rule: ‘What Does This Mean for My Son?’

Dec. 4, 2012, 6:33 a.m.

Tim­ing is everything. Less than three years after my son was dia­gnosed with As­per­ger’s syn­drome — and just three days after I pub­lished a magazine art­icle about his con­di­tion — the Amer­ic­an Psy­chi­at­ric As­so­ci­ation dropped As­pies from the psy­chi­at­rist’s “bible.”

My re­ac­tion was typ­ic­al: What does this mean for my boy? The news rolled in­to my in­box along with thou­sands of e-mails from As­pies and and As­pie fam­il­ies. Some read­ers re­cog­nized them­selves or a loved one in my son Tyler. Oth­er read­ers, in­clud­ing many not touched by aut­ism, sym­path­ized with my pa­ternal battle to strike a work-life bal­ance. Many saw them­selves in the tend­ency to fit my beau­ti­ful round peg in a square hole.

A few read­ers cited the APA de­cision, which will lump As­per­ger’s and sim­il­ar so­cial-in­ter­ac­tion is­sues un­der the aut­ism-spec­trum um­brella, and asked me, “What does this mean for my child?” The an­swer is I don’t know. The ini­tial ex­plan­a­tions are un­sat­is­fact­ory. This from CBS News:

“The aim is not to ex­pand the num­ber of people dia­gnosed with men­tal ill­ness, but to en­sure that af­fected chil­dren and adults are more ac­cur­ately dia­gnosed so they can get the most ap­pro­pri­ate treat­ment, said Dr. Dav­id Kup­fer, who chaired the task force in charge of re­vis­ing the manu­al, and is a psy­chi­atry pro­fess­or at the Uni­versity of Pitt­s­burgh.

“One of the most hotly ar­gued top­ics ahead of the re­vi­sions was how to define the vari­ous ranges of aut­ism. Some ad­voc­ates op­posed the idea of drop­ping the spe­cif­ic dia­gnos­is for As­per­ger’s. People with that dis­order of­ten have high in­tel­li­gence and vast know­ledge on nar­row sub­jects but lack so­cial skills.

Some who have the con­di­tion em­brace their quirk­i­ness and vow to con­tin­ue to use the la­bel. And some As­per­ger’s fam­il­ies op­posed any change, fear­ing their kids would lose a dia­gnos­is and no longer be eli­gible for spe­cial ser­vices.”

In or­der to bond with my son and help him put his so­cial-skills classes to use, Tyler and I traveled to U.S. his­tor­ic­al sites and vis­ited with two former pres­id­ents (Bill Clin­ton and George W. Bush). The pro­ject helped me see Tyler through the for­giv­ing eyes of oth­ers. If they ac­cept his quirk­i­ness — and they do — I should em­brace it. And I have.

Re­ac­tion to Tyler’s jour­ney has taught me that my fam­ily is not alone — we are part of a massive com­munity of As­pie fam­il­ies who are get­ting sup­port denied to gen­er­a­tions past. Still, I ache for people who don’t have the time and re­sources, even today, to sup­port their chil­dren. I will be watch­ing how in­sur­ance com­pan­ies, the gov­ern­ment, and health care pro­viders re­spond to the APA de­cision. This must not be a step back for As­pies. More from CBS News:

Lori Sherry, pres­id­ent of the As­per­ger Syn­drome Edu­ca­tion Net­work, told The New York Times in March, “Our fear is that we are go­ing to take a big step back­ward. If clini­cians say, ‘These kids don’t fit the cri­ter­ia for an aut­ism-spec­trum dia­gnos­is,’ they are not go­ing to get the sup­ports and ser­vices they need, and they’re go­ing to ex­per­i­ence fail­ure.”

But the re­vi­sion will not af­fect their edu­ca­tion ser­vices, ex­perts say.

The new manu­al adds the term “aut­ism-spec­trum dis­order,” which already is used by many ex­perts in the field. As­per­ger’s will be dropped and in­cor­por­ated un­der that um­brella dia­gnos­is, which will also in­clude kids with severe aut­ism, who of­ten don’t talk or in­ter­act, as well as those with milder forms.

Kelli Gib­son of Battle Creek, Mich., who has four sons with vari­ous forms of aut­ism, said Sat­urday she wel­comes the change. Her boys all had dif­fer­ent la­bels in the old dia­gnost­ic manu­al, in­clud­ing a 14-year-old with As­per­ger’s.

“To give it sep­ar­ate names nev­er made sense to me,” Gib­son said. “To me, my chil­dren all had aut­ism.”

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