Autism and Aging

Autism and Aging: What Happens when Children with Autism Grow Up

Written on 29 August 2010, for:
The International Center For Autism Research and Education

In a TIME magazine article “Growing Old With Autism,” published in May of 2009, Author Karl Taro Greenfeld describes the impact of his brother Noah’s care as he and his siblings are involved in their adult lives today.  Karl writes, “I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves.”

After aging out the well established Board of Education IEP process, “for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.”

By age 35, Noah had been living in institutions since he was 18. Greenfeld says “My parents are now in their 70s. My father underwent open-heart surgery a few years ago. Eventually, the responsibility for Noah will fall solely upon me. My travels, from Los Angeles to New York City to Paris to Tokyo to Hong Kong, will always bring me back to him. I don’t know any other life. I have no other brother.”

Aside from more general concerns such as residential and financial status, there is little known about how to cope with the daily struggles and complications that individuals with autism face as they grow older, with this disability. Considering that not all of those with autism, or a similar disability, will be living in a managed care situation, analysis and data collection into the most basic themes of aging and autism are necessary.

Across the globe, in Israel, the services for adults with Autism have been sprouting up all across the country at an astonishing pace. The number of state-of-the art institutions and in home care services are based on new millennium planning and well researched models, which is worth duplicating globally.  For example, Aleh’s network cares for Israel’s most severely disabled children, offering the best rehabilitation, the economical and social future of people with autism in Israel.  Aleh has built a village in Israel calledAleh Negev for seriously disabled children for when they become adults, a rehabilitative village for individuals who need around-the-clock therapeutic care.  Funds are raised in the United States with the American Friends of Aleh Foundation,  to keep this costly project alive.

In July, the International Center for Autism Research and Education, Inc., (Icare4autism) held their first annual International Autism Conference in Jerusalem. Over 600 attendees filled the Ramada-Renaissance for the grand scale event that featured over 30 speakers from around the globe. This conference featured medical and educational information pertaining to autism and also features lectures on ” The Aging with Autism Process.”

In America, employment rates haven’t changed since Americans with Disabilities Act passed.  A recent survey from the National Organization on Disability reported, “Of all working-age people with disabilities, only 21% say that they are employed, compared to 59% of people without disabilities.”

Liz Bell, the mother of Tyler, who has autism, is a very forward thinking person who has appeared on ABC news “Parents of Boy With Autism Map Out His Future as an Adult”.  Very few resources exist for adults with autism, leading many of them to live life in isolation. The Bells want to avoid that fate for their son, but they worry what his future will be like when they’re no longer there to offer support.

Theory Of Mind

“I Cannot Tell a Lie,” Children with Autism, Missing Milestone

Written on 28 August 2010, for:
The International Center For Autism Research and Education

How many times do parents ask for small truths to be told from their child, or students (for the teachers out there). For a child without autism, it can be a very hard task to admit that they are the ones who took the cookie from the cookie jar.

Anecdotal evidence and observational studies suggest that children as young as 2 years begin to tell lies (1).   A new study was published June 17, 2010, titled “Lie-Telling, Theory of Mind, and Verbal Ability in Children with ASD” (2).

Parents of young, typically developing children, oftentimes may find it frustrating when their child begins to demonstrate deceptive behaviors and the ability to tell increasingly convincing and sophisticated lies. Nevertheless lie-telling is an important developmental milestone in a young child’s life. The goal of telling a lie is to try to make someone else believe something that the lie-teller does not believe is true.

This milestone consists of two developmental stages which are important for this study, described as Early Deception and Theory of Mind.  The researchers conclude that while 2- and 3-year-olds can be encouraged to engage in deceptive ploys, only 4-year-olds clearly demonstrate that they have a ToM (3).

Early Deception and Theory of Mind

Early deceptive acts are learned strategies used only to manipulate the behaviors of others, such as lying to avoid punishment. Theory of Mind (ToM) is the two-part ability to understand that other people have knowledge and beliefs, and their own knowledge and beliefs may differ from the lie recipient’s knowledge and beliefs. The second ability with ToM is an understanding that the person you lie to does not know what your knowlefge of beliefs are.  If you have ToM, you will instinctively understand that just because you know something, it doesn’t mean that I know it too. If you have ToM, you are not just manipulating the behaviors of others, but you are also manipulating the behaviors of others by virtue of changing others’ beliefs.

For example, when a child, who ate a cookie that he was forbidden to eat until after dinner, is asked whether he ate the missing cookie, he says, “No, I didn’t,” to avoid reprimand from his mother.  This is early deception, found in children as young as age 2.  However, if the child would say “the dog ate the cookie”, or hiding the cookie behind his back, that would reflect on the child’s ability to have presence of ToM, which is usually found in typically developing child as young as four years of age.

Without the presence of ToM, a child will not attempt to manipulate the beliefs of another person. Lie-telling can be seen as a real-world application of an understanding of others’ minds (4) and the emergence of lie-telling in young children can be taken as an indicator for the presence of at least a rudimentary ToM.

The Sally-Ann test is a famous test used to judge whether a person has ToM or not.  A child lacking in Theory of Mind will only see the situation from her own point of view. Most people of low intelligence will not be able to do the test, even though they may be otherwise very sociable, such as people with Down’s Syndrome. People with another disability,William’s Syndrome are exceptional in their ability to do this test, despite apparently low, functional intelligence.  However, most children with ASDs will not be able to complete the test, as is true for ASD adults.

Many researchers have demonstrated that children with ASD have a deficit in ToM and parents of children with ASD report that unlike their typically developing children, theirautistic children do not tell lies. However, there are no published empirical research studies on this population and their ability to produce or generate their own lies. This study aims to bridge this gap in the literature, and provide therapeutic recommendations to promote ToM for children and adults on the Autistic Spectrum.

Some findings of this study explains why children with ASD would not tell prosocial lies because children with ASD have impairments in recognizing and understanding other people’s affective states (5).

This interpretation suggests the possibility that the lies told by children with ASD may be learned strategies used to manipulate others’ behaviors and consequently avoid punishment. These strategies may be scripted and not involve manipulating the beliefs of another person. For example, a child with ASD may have learned that when he commits a transgression, the adult who had previously warned him against committing the transgression will be angry and may punish him. However, if he denies having committed the transgression, he is usually able to avoid punishment.  Such deceptive acts may simply demonstrate that children can manipulate others’ behaviors but do not necessarily reflect the presence of a ToM.

In summary, two possible interpretations of the results from the present study are: (A) the lie-telling abilities of children with ASD are merely learned behaviors and are not indicative of a ToM, and (B) lies told by children with ASD are only manifestations of a rudimentary ToM.

References:

(1) Bussey, 1992; Darwin, 1877; Leekam, 1992; Newton, Reddy, & Bull, 2000; Wilson, Smith, & Ross, 2003

(2) “Lie-Telling, Theory of Mind, and Verbal Ability in Children with ASD” by Annie S. Li1, Elizabeth A. Kelley, Angela D. Evans, Kang Lee, of the Department of Psychology, Queen’s University, Canada and the Institute of Child Study, University of Toronto, Canada.

(3) Sodian, Taylor, Harris, & Perner, 1991

(4) Talwar & Lee, 2008b

(5) Brent, Rios, Happé, & Charman, 2004;Hobson, 1986; Tager-Flusberg, 1992