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Terese Pawletko, Ph.D
reprinted from: FOCAL Points, Fall 2002 Volume 1, Issue 2
The journal concerning Optic Nerve Hypoplasia & Septo Optic Dysplasia

As a former teacher of the visually impaired I was struck by the fact that a subgroup of children with whom I worked did not respond to typical interventions used in early intervention with children with significant visual impairment – for instance, multi-sensory approaches, narrating everything that was going on around the child, hand-overhand presentation. In fact, several of these children appeared to “retreat” and/or become distressed (e.g., might engage in stereotypic behaviors, “appear to be deaf”). Literature in the vision field did not provide an adequate explanation as to the cause for these behaviors aside from labeling the mannerisms as “blindisms” and calling them “autistic-like” – the belief being that some of these behaviors were related to the child’s sensory impairment and lack of opportunities to engage in more typical social exchanges. Rarely was the following question raised: “could this child also be autistic?” At the end of this brief introductory article, I hope that you will have a general understanding of the definition of autism and why it is possible for a child to have both a significant visual impairment and autism.

1. What is autism?

Autism is a biological developmental disorder of the brain that impairs communication and the ability to relate to others. It is often referred to as a spectrum disorder given its presentation ranges from mild to severe in any of its features.

2. What causes autism? How is it diagnosed?

Autism is not etiology specific – that is, it has many possible causes including genetics, environmental toxins, metabolic dysfunction, etc. The commonality among all the causes is that it is a brain-based disorder.

Autism is diagnosed by the presence of certain behavioral features – it cannot be diagnosed by a specific blood test or scan. The defining features include: impairments in reciprocal social interaction that is sustained (e.g., impairment in use of nonverbal behaviors; with young children may fail to develop peer relationships appropriate to developmental level; may lack spontaneous seeking to share enjoyment and interests with someone; may prefer solitary activities; limited to no concept of needs of others); impairments in communication marked and sustained affecting spoken language and nonverbal skills (e.g., delay in or lack of development of spoken language; or may have impairment in ability to sustain conversation; or may show repetitive use of language or idiosyncratic language). For those with speech present, may have unusual pitch, intonation, rate, or rhythm to speech.

Grammar may be immature and include stereotyped use of language (e.g., repeating phrases; repeating commercials). Child may have difficulty understanding simple questions or commands. There may be a lack of varied, spontaneous make-believe or social imitative play commensurate with developmental level. Individuals on the autism spectrum also have restricted, repetitive, stereotyped patterns of behavior, interests (e.g., intense preoccupation with dates, phone numbers; electronic equipment; perhaps with parts of objects), and activities; inflexible adherence to nonfunctional routines or rituals; stereotyped/repetitive motor mannerisms, etc. They may insist on sameness and show resistance and/or anxiety over small changes. There may be stereotyped body movements (e.g., flapping, rocking, toe walking, hand posturing).

Finally, these delays or abnormal functioning in one or more of the above areas must be present before the age of three. While not a defining feature, a number of children and adults on the spectrum have hypo or hypersensitive responses to various stimuli (e.g., certain sounds; certain textures including clothing or food; smells).

3. I’ve read about autism but my child does not have every feature exactly as described in the article. Does that mean he/she doesn’t have autism?

Several issues need to be considered here. First and foremost, autism (and its related disorders, including Aspergers, PDD/NOS, for instance) is defined by the presence of the cluster of behaviors – the presence of any one behavior (e.g., flapping) does not mean that a child is autistic. In addition, it is developmental in nature and as a result, it will change somewhat in presentation as a result of the maturational process. What is important is that the cluster of behaviors be present prior to the age of 3. Finally, given it is a spectrum disorder (e.g., child’s level of function can vary on all dimensions including cognitive ability, behavioral presentation, sensory sensitivities, language/communicative abilities, social relatedness) it is highly unlikely that any individual will fit any one description to a “T.”

4. Can a child with a visual impairment be autistic too? I heard that they have “autistic-like tendencies” but not autism. Is that true?

Children with visual impairments can be on the autism spectrum as well. Remember, it is a brain-based disorder so those children with neurological vulnerabilities (e.g., seizure disorders, septo-optic dysplasia, Prematurity associated with bleeds, agenesis of the corpus callosum, congenital rubella syndrome, etc.) may be at increased risk. The literature in the field of visual impairment needs to be more cautious in its use of the terminology “autistic-like” in that it can result in missed diagnosis and/or delay in procuring appropriate services for those children who are on the autism spectrum. Strategies useful for children who are visually impaired and autistic vary considerably from those effective for children who are just visually impaired.

5. Why are we hearing so much about autism now?

Autism is not as rare as was once thought. According to Dr. Marie Bristol-Powers (1999) National Institute of Child Health and Human Development, autism spectrum disorder is not rare as was once thought. Current estimates suggest that 1 in 1,000 individuals fit the definition of "classic" autism and that 1 in 200 individuals fall within the Autism Spectrum, including Pervasive Developmental Disorder and Asperger's Syndrome.

Why the increase?

We now have clearer diagnostic criteria, increased public awareness and “acceptance”, broader definition of autism as a spectrum disorder, more children, tinier and neurologically more vulnerable children are surviving prematurity; and we have the presence of environmental toxins as potential contributors.

6. Is the notion of autism co-occurring in a child with visual impairment new?

Dr. Stella Chess - her observations of children with Rubella noted “…the difference between the autistic and nonautistic rubella children with sensory defects is the use they make of alternative…modes of experiencing. Nonautistic youngsters … are very alert to their surroundings through their other senses, especially exhibiting visual alertness and appropriate responsiveness... also through seeking of affectionate bodily contact. Some are shy, some slow to warm up, some perhaps wary; but one is impressed by their readiness to respond to appropriately selected and carefully timed overtures. …the autistic children neither explore alternative sensory modalities nor manifest appropriated responsiveness. They form a distinct group whose distance from people cannot be adequately explained by the degree or combination of visual and auditory loss, nor by the degree of retardation where this also exists. … whether retarded or not, their affective behaviors do not resemble those of children of their obtained mental age – in fact, there is no mental age for which the behaviors are appropriate.” Chess... P. 116 - 117

Why the controversy? Why the ongoing debate? Confusion in literature

  • Treated symptoms in isolation (e.g., mannerisms)
  • Viewed as indicative of emotional and behavioral problems (e.g., self-stimulatory behaviors; problems of hyperactivity, inattention, impulsivity; disruptive behaviors such as oppositional; problems of social interaction; problems of mood, affect)
  • Viewed as being totally associated with sensory deprivation (e.g., turn inward for stimulation)
  • Viewed as related to mother-child attachment (e.g., in incubators longer; lack of eye contact so hard to read cues; maternal depression further limiting her involvement w/child)

Examples of some of the eye conditions where Autism Spectrum Disorder has been documented

  • Anophthalmia (may occur at critical periods in brain development and yield higher co-morbidity)
  • Lebers Congenital Amaurosis
  • Peters Anomaly
  • Retinopathy of Prematurity
  • Septo-optic dysplasia
  • Congenital Rubella Syndrome

Key thing to remember: autism is a brain related disorder; that estimated that 50% of blind children have LD and 56% of those with severe LD or IQ<50 have autism (Steinberg et al., 2002)

7. What do we do about it?

It is important to begin to advocate for appropriate diagnosis for your children through collaborative efforts between autism diagnostic centers and teachers of the visually impaired, and by advocating with your primary care providers. Cooperative efforts between vision and autism programs will be critical as most of the strategies used for children with autism rely on vision – not always an option for our children and students. For more information you can go to:

and others…

About the author:

Dr. Terese Pawletko has worked with children since 1976, first as a teacher of the visually impaired, then as school and pediatric psychologist. Starting in 1989, after completing a postdoctoral fellowship in Pediatric Psychology at UNC-Chapel Hill, she worked at UNC School of Medicine with chronically ill children, and with autistic students, their parents, and related service providers. In 1997 she joined the staff of the Maryland School for the Blind where she worked with multiply handicapped children with a variety of disabilities including visual impairment, autism spectrum disorders, cerebral palsy, mental retardation, and learning disabilities, as well as training staff to work with these students. While at MSB, Dr. Pawletko and her colleagues developed the first program in the country for children with visual impairment and autism. She is considered a national expert in this area and has presented at regional, national, and international conferences, conducted evaluations of children suspected of dual diagnosis, and provided consultation to and training of parents and service providers.

 
Terese's contact information:
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Snail mail:
Terese Pawletko, Ph.D.
33 Johnson Lane, Eliot, Maine  03903