Sunday, May 27, 2018

Why IQ scores are erroneous for autistic people

When it comes to measuring the capabilities and challenges of autistic children and adults, IQ is one of the main measures that is employed.  However, there are some reasons why traditional IQ tests are not the most accurate ways in understanding the full scope of individuals on the spectrum.  For label-obsessed neurotypicals, these tests can provide explanation in a simplistic matter in understanding the capabilities and challenges for those on the spectrum.  However for the autistic community, these tests can be a disservice especially when it comes to educational placement and provision of services. It is with this post, I will discuss some of the flaws or shortcomings of traditional IQ tests.

One of the reasons, why IQ tests are flawed is that it can underestimate or overestimate the abilities and challenges that autistic people actually have.  In fact, IQ is the biggest determinant when considering if a person is "high functioning" or "low functioning." There are two scenarios in which this can occur.  For people whose autism is not as apparent and have the privilege of passing,  our high scores on intelligence tests can prevent us from getting the support we need.  There is this erroneous and outdated assumption that if an autistic person has high intelligence then they can navigate  neurotypical society with little to no support.   In fact, some states will deny support services to those who score above 70 on IQ tests.  However as this article states,  intelligence tests don't account  the executive functioning challenges that autistic people without intellectual disabilities face in their day-to-day lives.  For instance a person who tests in the "average to above-average" range on IQ tests may have difficulty to do important tasks of daily living such as grocery shopping, budgeting, personal hygiene etc.
 I am one of those on the spectrum that would score high on traditional intelligence tests, but I still find some crucial activities of daily living such as cooking, making doctor's appointments, transportation etc.  very challenging and still require support to navigate some of these tasks.  My so-called "high IQ" masks some of the social challenges (e.g. social anxiety) I still face as an adult on the spectrum.  Eventually when I plan to live on my own, I will require support to effectively manage the transition of living away from parents as well as managing activities of daily living.  However, I am afraid that my "high IQ score" would serve as a barrier for people to recognize my support needs.

For the other scenario,  having a "low IQ" can make people underestimate the abilities of some autistic people especially for those who have limited to no speech.   Autistic individuals without any reliable spoken language tend to score low on traditional intelligence tests which makes the people around them doubt that they have any capabilities.  For instance, their parents would have been told by many doctors and experts that they would more likely end up in an "institution" and less likely to be mainstreamed and pursue postsecondary education.  They would also more likely  be relegated to segregated classroom settings.  However there is a growing group of nonspeaking autistics that have shown that "being nonverbal does not mean not thinking."    In fact, some went on to pursue postsecondary education as illustrated in the lifestories  of DJ Savarese and Sue Rubin.  These examples show how faulty the results of traditional IQ tests can be for those who are more affected by autism.   Consequently, it can lead people to mistakenly believe that they are "intellectually disabled."

Another big reason why intelligence tests are inaccurate measures, is that autistic people usually don't test well.  These tests require a person to sit in a room for a long period of time and have questions that contain a lot of verbal information.  The testing environment may also trigger sensory  issues in some autistic individuals.  Some also don't have the attention span and cooperation to do the tasks the test examiner wants them to complete .  When I first got diagnosed, I took a verbal IQ test in which I did terribly on due to my limited language capacities.  The examiner who was a young graduate student mistakenly thought that I had an intellectual disability based of my test results.  When my mother talked with the head psychologist, she said I was given the wrong test.  This shows how the structure of the tests themselves can not accurately predict the true intelligence levels of autistic people.

Lastly,  people on the autistic spectrum demonstrate their intelligence in different ways than what is reflected on traditional IQ tests like the Wechslers or Stanford-Binet scale.  For instance, this article talks about how these IQ tests set autistic people up to fail by overlooking their hidden talents by emphasizing their disability. For instance, two boys that I work with (I am a paraprofessional at a special needs school) demonstrate the discrepancy between IQ score and actual intelligence. One has a short attention span and gets easily overwhelmed with a lot of verbal information which would make testing his IQ very hard.  However he has knows roman numerals, can write the alphabet backwards and can script in different foreign languages. The other boy also has a hard time with paying attention and would have a hard time completing the tasks and following the verbal instructions that characterize most IQ tests.  However,  he is really good at computers (he has his own youtube channel), knows the different models of trains and cars and memorizes license plate numbers and phone numbers.  These boys would not test well when given traditional intelligence tests, but it is evident that they have hidden talents that are not easily seen.

These are some of the ways how intelligence tests can fall short of describing the actual abilities and challenges that autistic people have.  Autistic people often have "spiky profiles" meaning that they will have strengths in some areas while they struggle in other areas.  We need to stop conflating autism with intellectual disability.  This means state supports (especially the adult service system) need to cater more to the needs of autistic individuals.  Therefore, eligibility criteria  to qualify for such services needs to changed to reflect the unique and ever changing needs of those on the spectrum.  Other methods need to be explored in terms of measuring the actual intelligence of an individual with autism besides relying on the Wechsler scale.  We need to look at the whole person on the spectrum and then determine the appropriate supports rather than just making assumptions based on a single IQ score.










Saturday, May 12, 2018

The Medical vs. Social Model of autism and disability

This topic has been on my mind for awhile but other topics seem to take precedence when writing blogs.   It is the medical vs. social model when discussing disability.  In case you are not familiar with these concepts, there seems to be two different views when talking about disability.  The medical model looks at disability as a problem that needs to be fixed.  This school of thought breaks down the characteristics of different disabilities as a set of symptoms and focuses on treatments and cures.  On the other hand, the social model looks at disability as an important identity to a person and how different social forces can create either support or create barriers that affect the lives of these individuals.

A perfect example of the social and medical models at play is with autism.  For a long time, the dialogue of autism has been focused on the medical model of deficits, cures and symptoms.  Some examples of the medical model of autism include behavioral interventions that try to make autistic children "indistinguishable from peers," the use of  functioning labels,  big autism organizations that are runned by neurotypicals that funds research into the causes of autism with the hopes of preventing the condition.  The product of  all this medical rhetoric is negative stereotypes made about autistic people.  An example of a commonly held stereotype is that "autistic people lack empathy" or that we are "socially awkward and immature."    As a result, the medical model has led society to view autistic people as "less than human" and are not deserving of the same rights as humans without disabilities.  I believe this thinking has played a big role in the continued exclusion of the voices and experiences of adults on the spectrum.

Self advocates like myself had enough of the dialogue being focused on cure and deficits.  We asked for a more social model of disability to take place of the prevailing medical model.  This is what we call neurodiversity.  Neurodiversity states that people with different neurological conditions such as autism, Dyslexia, ADHD etc. are wired differently and that these different neurostyles need to be accommodated as well as accepted.  Critics accuse the neurodiversity movement of downplaying the challenges of autism and glorifying its strengths.    Most neurodiversity advocates (myself included) acknowledge the challenges and still see autism as a disability.  The main point of the movement is to remove the negative stigma of autism and that disability is not something to be feared or gets in the way of happiness.  Proponents of the neurodiversity movement believe that ignorance and negative societal attitudes get in the way of happiness in those who live with autism and other disabilities.   We demand the same human rights and civil liberties that are granted to nondisabled people.

 The social model of looking at autism is slowly taking force.   Some examples is the is the call for the inclusion of self advocates in setting the course of autism research; the relationship between acceptance of autism and mental health issues that commonly occur in autistic people is being finally explored; as well as the push for self determination and person centered planning in adults with developmental disabilities.  There are more autistic self advocates that are sharing their experiences than there was 10-15 years ago.  I believe if we embraced a new social paradigm of addressing the social barriers that autistic people (as well as others with other conditions) face,  the quality of life and outcomes of these individuals would be greater.