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.
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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 and 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 of Autism Society NL
