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How much autism is there in intellectual disability?

Can a person with intellectual disabilities also have autism? The answer is yes, although the issue is often more complicated. Let's look at the description of a case below.
A less than 4-year-old girl with Down syndrome, comes in for a diagnosis on the autism spectrum. She spends her time mainly listening to loudly playing toys or staring at glowing toys as if she doesn't see them, even if they are right in front of her eyes. Lacks any reaction to the speaker's voice. She seems "absent" and "withdrawn."
The girl's behavior may indicate an autism spectrum disorder. However, before making a final judgment, let's take a closer look at the characteristics of intellectual disability.

The American Psychiatric Association (2013) defines it as a deficit in intellectual and adaptive functioning, as measured by standardized tests, indicating an intelligence quotient below 70 (IQ score). This deficit, significantly affects daily, independent functioning in society (after Sandjojo, Zedlitz, Gebhardt, Hoekman, Haan, & Evers, 2018). According to research, carried out on the British population, the autism spectrum is present in about 7.6% of people with intellectual disabilities (Emmerson, 2003, after Rathwell, Simonoff, 2018). In addition, intellectual disability can also coexist with other conditions, such as cerebral palsy, epilepsy, sensory disorders (Carvill, 2001) and affect a higher tendency to withdraw from social interaction (Rola, 2009).

Given these considerations, it is worth considering whether the behaviors observed in the girl described above, may be the result of intellectual disabilities and, for example, problems with vision and hearing (which secondarily affect, also, difficulties in establishing social interactions), or whether they are indicative of the autism spectrum (Vaan, Vervloed, Peters- Scheffer, Gent, Knoors, Verhoeven, 2015).

In addition, in the behavior of people with intellectual disabilities, limited and repetitive patterns of behavior characteristic of the autism spectrum can also be observed (Pote, Wang, Sethna, Blasi, Daly, Kuklisova- Murgasova, Lloyd-Fox, Mercure, Busuulwa, Stoencheva, Charman, Williams, Johnson, Murphy, & McAlonan, 2019, after Rzosinska, 2019), which may be a way of compensating for emotional deficits. This type of blinkiness can also be considered adaptive behavior in people with, for example, visual impairment and not necessarily signify the autism spectrum (Carvill, 2001).

Let's take another look at the issue of nomenclature, which has a major impact on how we view people with disabilities, in this case autism spectrum and intellectual disabilities. It is common to use the term "mental retardation" to describe the developmental condition of a person with low intellectual potential, even though such nomenclature has long been abandoned as highly stigmatizing. Nowadays, it is more correct to speak of someone with intellectual disabilities (Rawinska, Terpilowksi, 2017) or autism, e.g. Jasiu with intellectual disabilities, Kasia with autism. This sentence construction does not define the child by his or her disability, but as one of his or her characteristics. The World Health Organization presents the issue as follows:
First there is damage (impairment), the consequence of which is disability (disability), the end result of which is handicap (handicap). Impairment is the result of loss of function or the creation of a mental, physical or anatomical defect. Its result is disability, meaning a limitation, impairment or total lack of ability to perform an activity in a manner considered normal. The final stage of the problem's buildup is impairment, meaning the impairment or inability to perform social roles (Stelter, 2009, after Rawinska et al., 2017). This framing of the problem may indicate a lack of opportunities for people with intellectual disabilities to thrive. Nothing could be further from the truth. Maria Grzegorzewska first captured the problem in dynamic terms. This means that intellectual disability does not mark the end of opportunities for development (Rawinska et al., 2017). This development will simply be different. It may be that it will involve filling different roles than have been accepted by society. This is where the issue of "normality" in the broadest sense comes in. Ultimately, no two people in the world are alike.
This outlook opens the door wide for early intervention, including for people on the autism spectrum. Pisula (2012), emphasizes the effectiveness of early intervention, which affects the increase of intelligence quotient precisely in people on the spectrum (Howlin, Magiati and Charman, 2009; Peters-Scheffer, Didden and Korzilius, 2011). A researcher of the problem, she also emphasizes the difficulty of making an accurate diagnosis regarding the intellectual level in people with autism. The results may differ, depending on the tool adopted, such as those considering a verbal or nonverbal scale. Also important is the level of cooperation with the researcher, the ability to focus attention or the severity of routine behavior. These features of the autism spectrum, significantly affect the accuracy of the diagnosis of the intellectual level. Early intervention is particularly important precisely in terms of the development of skills, especially social skills, which will allow people on the spectrum to use their intellectual abilities. As I mentioned above, it is about not allowing the problem to build up. It is worth mentioning at this point early diagnosis, thanks to which, the child receives support sooner, which significantly contributes to improving the quality of life for him and his family in the future. The gold standard for many years, in Western countries, has been the use of standardized tests, such as ADOS (Autism Diagnostic Observation Schedule) and ADI- R (Autism Diagnostic Interview- Revised) (Chojnicka, Ploski, 2012), which allow the diagnosis of this disorder in children, as early as 12 months of age (Rynkiewicz, King, Kalisz, Slopień, Janas- Kozik, Lucka, 2018).

The situation is complicated when it comes to the diagnosis of autism in people with intellectual disabilities. Often, the typical behaviors of autistic people observed in a population with a diagnosis of intellectual disability and sensory perception disorder are the result of the disability they have and not the autism spectrum. Therefore, Dutch researchers are developing a test to diagnose autism among people with sensory and intellectual disabilities- OASID (observation of autism in people with sensory and intellectual disabilities) (Vaan, et al., 2015).

In summary, the earlier we take measures to develop a child with a developmental problem, the better the results will be, regardless of the level of intellect or the presence of autism. It is important to identify the child's immediate sphere of development and strive for independence, so that the child has a sense of agency and fulfillment. It is worth leaning into the issue of impairment in the context of the secondary effects of having a disability.

 

The author of the text is Kamila Rzosinska, ABA Certified Therapist of the JiM Foundation

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