Use of IQ 70 to deny ASD ser­vices still viewed as per­va­sive

The Gulf News (Port aux Basques) - - Editorial -

Younger and older adults with autism spec­trum dis­or­der (ASD) may need sup­port from their fam­i­lies and gov­ern­ment.

The high rate of un­em­ploy­ment amongst this marginal­ized pop­u­la­tion, greater than 75 per cent, is un­ac­cept­able. They can have higher than av­er­age rates of clin­i­cal de­pres­sion, sui­ci­dal thoughts, anx­i­ety and re­lated dis­or­ders. Still, when young adults fin­ish school­ing, few ser­vices are pro­vided to them and their fam­i­lies. Prom­ises were made in 2015! But there are still no ser­vices if a youth or adult with ASD has an IQ above 70.

IQ refers to a per­son’s in­tel­lec­tual ca­pac­ity and level of cog­ni­tive per­for­mance. ASD can have a lim­it­ing im­pact on a per­son’s cog­ni­tive per­for­mance; it can neg­a­tively im­pact per­for­mance across all do­mains of daily life, even when the IQ score is greater than 70 and cog­ni­tive per­for­mance is av­er­age.

A higher needs adult in his early 20s, with an av­er­age IQ score and the abil­ity to at­tend and com­plete cour­ses at MUN, CNA, and pri­vate col­leges may not have the abil­i­ties needed for in­de­pen­dent liv­ing, tak­ing care of per­sonal hy­giene, pre­par­ing meals, rec­og­niz­ing un­safe cir­cum­stances.

A younger per­son with ASD, per­haps 13-14, is ex­cep­tion­ally bright but so chal­lenged by be­havioural is­sues that she is not per­mit­ted to at­tend school, and when she is per­mit­ted, she can at­tend for an hour a day.

An­other adult, older with higher needs but ex­cep­tion­ally bright, with an IQ score of av­er­age or above, can­not be left alone at all. He must be con­stantly su­per­vised, re­strained on oc­ca­sion, be­cause of be­havioural and self-reg­u­la­tion con­cerns.

These per­sons with ASD live at home with their bi­o­log­i­cal or adop­tive par­ents or other fam­ily mem­bers. Fam­i­lies like these of­ten see one par­ent give up a ca­reer and work, for a life­time, and stay at home. Many fam­i­lies put the lives of all its mem­bers on hold to pro­vide for that one mem­ber who is equally val­ued and loved, be­cause there are no other sup­ports. Fam­i­lies that are get­ting older, per­haps even be­yond re­tire­ment age, maybe faced with life-threat­en­ing and/or de­bil­i­tat­ing ill­ness, see mom and/or dad con­tinue work­ing and pro­vid­ing the care and su­per­vi­sion needed by an adult son or daugh­ter — be­cause there are no sup­ports. IQ is above 70, so not even respite care is pro­vided.

Com­pare the 40-hour per week cost of fam­ily respite care (~ $35,000 per an­num) to the cost of liv­ing in al­ter­nate res­i­den­tial care ($275,000 per an­num). De­ci­sion-mak­ers are forc­ing some fam­i­lies to make dif­fi­cult life de­ci­sions re­gard­ing care for their adult son or daugh­ter, and well­ness for them­selves.

No sup­ports are pro­vided for youth and adults with ASD, or their care­givers — when the child’s IQ score is 72, 76, or 85. Health & Com­mu­nity Ser­vices, and oth­ers, be­lieve sup­ports are not needed based on good cog­ni­tive per­for­mance. It is be­lieved ev­ery­thing else must be nor­mal too! This is un­true and un­fair; and it’s been dev­as­tat­ing for many fam­i­lies.

Health of­fi­cials say the needs of those with IQ scores be­low and above 70 are dif­fer­ent, that meet­ing the needs of those above 70 re­quires new train­ing. That is not the case at all, the needs are of­ten the same. They may be slightly dif­fer­ent on oc­ca­sion, but not to the ex­tent of re­quir­ing ad­di­tional train­ing. Gov­ern­ment still uses IQ to de­ter­mine whether to pro­vide ser­vices for youth and adults with ASD, and their care­givers. It is still be­ing used even though gov­ern­ment knows the IQ score by it­self is not a good iden­ti­fier of a per­son’s abil­ity to live and act in­de­pen­dently. It is still be­ing used even though they said they were end­ing it in 2015.

Gov­ern­ment must ex­am­ine how an in­di­vid­ual can func­tion, given the daily rou­tines of life, and learn how it com­pares to some­one of sim­i­lar age and back­ground. This cre­ates el­i­gi­bil­ity cri­te­ria that are based upon ‘func­tional needs’. The cri­te­rion for de­ter­min­ing ser­vice needs and pro­vi­sion can never be just an IQ score. The crit­i­cally im­por­tant cri­te­rion must be an as­sess­ment of a per­son’s ‘adap­tive be­hav­iour’, or per­for­mance across all do­mains of life. An adap­tive be­hav­iour as­sess­ment score and an IQ score do not mea­sure the same thing! It’s time to end this dis­crim­i­na­tory prac­tice.

Scott Crocker is chief ex­ec­u­tive of­fi­cer, Autism So­ci­ety NL

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