Literacy is usually defined as the ability to read, write, listen, and speak. Autistic individuals usually have deficits in language and communication that impair literacy development. They may begin to talk late, have trouble following instructions, and have difficulties in pointing and naming pictures. These problems may frustrate affected children while simultaneously eroding their confidence. The resultant diminished self-worth is usually expressed as a reduction in health, comfort and happiness. This vicious cycle of frustration and disparaging self-talk may generalize to other behavioral and affective domains. Illiterate children may become naturally anxious, a fact which may help foster a bias in their social perception. It is therefore imperative that we recognize the specific instructional needs of autistic children and institute required comprehensive approaches that involves both families and educators. Unfortunately, the necessary research, information and resources are sorely lacking. In the end, many autistic children will grow to be illiterate and the problem will go unrecognized while hiding in plain sight.
The term literacy has been expanded but the root of the term still denotes reading and writing proficiency. The United Nations Educational, Scientific and Cultural Organization (UNESCO) defines functional literacy as: literacy that is required for effective functioning in a group and community and enables the individual to continue to use reading, writing and calculation for his/her own and the community’s development. In today’s society we expect people, our work force, to have achieved literacy at a 12th grade level. However, 14% of US adults are unable to read or write in a manner that would allow them to manage daily living activities and employment tasks. 85% of our young people in the juvenile court system are functional illiterate and 60% of the adult population in the prison system read at or below the fourth-grade level. It is inescapable that there is an inexorable link between literacy, poverty and crime.
You need functional literacy to fill a job application, to lease an apartment, apply for a credit card or a cell phone, and to take a driver’s license exam. You have a constitutional right to vote. However, in the sordid history of the US, from the 1890’s to the 1960s, certain states used literacy as a form of voter suppression. Not having the adequate literacy level limits the type of jobs you are qualified for and therefore your earning potential.
Figure: Earning potential according to literacy.
It is of grave importance that as part of the medical check-up, physicians assess the level of health literacy of an autistic individual. Health Literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Persons with limited health literacy are:
- More likely to skip important preventative measures (e.g., pap smears, mammograms).
- Often enter the healthcare system when they are sicker (they do not know how to take care of themselves).
- More likely to have chronic health conditions.
- Less able to manage chronic conditions effectively.
- Less knowledgeable of their illness and its management.
- Experience an increase in preventable hospital visits and admissions.
- Have a higher rate of hospitalization and use of emergency room services.
Indeed, and of particular importance to the autistic individual, you need literacy in order to:
- Read food labels and calculate serving sizes.
- Read the label on your medications to take them appropriately.
- Read insurance applications when managing any health condition.
For all of the above reasons we need to support our autistic children’s literacy development early. It will improve their chances later on in life to attain independent housing and for becoming an engaged member of society.
Make literacy accessible to your children. Use picture books. Encourage the reader to venture beyond the text. Engaging with children while reading will increase socialization. In this regard, be mindful that electronic books may decrease dialogue- print is better.
Some effective reading strategies include:
- Let the child turn the pages.
- Talk about the pictures.
- Point to the words.
- Make the story come alive.
- Ask the child questions about the story.
Reading a few minutes a day is better than no reading at all. Incorporate reading into the bedtime routine. Read anywhere and anytime. Carry a small book with you and have one in the car.
“Reach Out and Read” should be part of every layman (autism) support organization http://www.reachoutandread.org/our-story/. This Is the first pediatric evidence-based program shown to increase literacy. It started in a single clinic in Boston City in 1989 as a grass root effort with community collaboration. It is now present in all 50 states, in 6.080 clinics and practices. They give away 7.2 million books per year to approximately 4.7 million children. It is intervention with no side effects that leads to improved preschool language skills.