How to talk to parents about autism

Marcus Autism Center is an affiliate of Children’s Healthcare of Atlanta. ©2006 Children’s Healthcare of Atlanta Inc. All rights reserved.

How to Talk to Parents about Autism

Roy Q. Sanders, MDMedical DirectorDirector of Psychiatric ServicesDirector, Pediatric Neurodevelopmental Center

2 Marcus Autism Center is an affiliate of Children’s Healthcare of Atlanta. ©2006 Children’s Healthcare of Atlanta Inc. All rights reserved.

Autism Spectrum Disorders

A neurodevelopmental disorder that is characterized by pervasive developmental problems that must include impairments in social engagement, difficulties with language use, and fixations often associated with repetitive behaviors accompanied by rigidity.


A child labeled today as having an Autism Spectrum Disorder may look very different from the child diagnosed 30 years ago with Autism. At that time we diagnosed children who more closely resembled the children first described by Dr. Leo Kanner, in the seminal paper.

Kanner, L. (1943), Autistic Disturbances of Affective

Contact, Nervous Child 2, pp.217-250.

Classic Autism


Screening/Diagnostic Tools

M-CHAT – quick screen 23 items.

CARS –takes about 15 minutes to finish.

ADRS – takes about 20 minutes to complete.

GARS – takes about 20 minutes to complete.

A-DOS – structured observation, “gold standard,” takes about 45 minutes to administer.

A-DI – structured diagnostic interview can take several hours to complete. Also “gold standard.”


Please fill out the following about how your child usually is. Please try to answerevery question. If the behavior is rare (e.g. you've seen it once or twice), pleaseanswer as if the child does not do it.

1. Does your child enjoy being swung, bounced on your knee, etc.? Yes No2. Does your child take an interest in other children? Yes No3. Does your child like climbing on things, such as up stairs? Yes No4. Does your child enjoy playing peek-a-boo/hide-and-seek? Yes No5. Does your child ever pretend, for example, to talk on the phone or take care of dolls or pretend other things? Yes No6. Does your child ever use his/her index finger to point, to ask for something? Yes No7. Does your child ever use his/her index finger to point, to indicate interest in something? Yes No8. Can your child play properly with small toys (e.g. cars or bricks) without justmouthing, fiddling, or dropping them? Yes No9. Does your child ever bring objects over to you to show you something? Yes No10. Does your child look you in the eye for more than a second or two? Yes No11. Does your child ever seem oversensitive to noise? (e.g., plugging ears) Yes No

MCHAT


12. Does your child smile in response to your face or your smile? Yes No13. Does your child imitate you? (e.g., you make a face-will your child imitate it?) Yes No14. Does your child respond to his/her name when you call? Yes No15. If you point at a toy across the room, does your child look at it? Yes No16. Does your child walk? Yes No17. Does your child look at things you are looking at? Yes No18. Does your child make unusual finger movements near his/her face? Yes No19. Does your child try to attract your attention to his/her own activity? Yes No20. Have you ever wondered if your child is deaf? Yes No21. Does your child understand what people say? Yes No22. Does your child sometimes stare at nothing or wander with no purpose? Yes No23. Does your child look at your face to check your reaction when faced with something unfamiliar? Yes No© 1999 Diana Robins, Deborah Fein, & Marianne BartonPlease refer to: Robins, D., Fein, D., Barton, M., & Green, J. (2001). The Modified Checklist for Autism in Toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31 (2), 131-144.

MCHAT (cont)


M-CHAT Scoring Instructions

A child fails the checklist when 2 or more critical items are failed OR when any three items are failed. Yes/no answers convert to pass/fail responses. Below are listed the failed responses for each item on the M-CHAT. Bold capitalized items are CRITICAL items. Not all children who fail the checklist will meet criteria for a diagnosis on the autism spectrum. However, children who fail the checklist should be evaluated in more depth by the physician or referred for a developmental evaluation with a specialist.1. No 6. No 11. Yes 16. No 21. No2. NO 7. NO 12. No 17. No 22. Yes3. No 8. No 13. NO 18. Yes 23. No4. No 9. NO 14. NO 19. No5. No 10. No 15. NO 20. Yes


Interventions

There are three well know programs of intervention

ABA DIR/Floortime TEEACH


ABA (Applied Behavioral Analysis)

Applied Behavioral Analysis is a systematic study and measure of observable behavior and then manipulating the environment to modify behavior. The environmental modifications are designed to increase more socially appropriate and adaptive behaviors.


ABA (Applied Behavioral Analysis)

Key aspects of ABA are:

Observation for what behaviors look like and their frequency. What leads to the behavior and what are the consequences positive and/or negative for the behavior?

Breaking down desired skills into steps.

Teaching the steps through repeated presentation of discrete trials.

Data on performance is tracked to show changes over time.


DIR (Developmental, Individual-Difference, Relationship-

Based)/Floortime

Floortime is based on the premise that children learn skills from relationships with significant others in their lives. It is child directed and based on interactive experiences in a low stimulus environment ranging from two to five hours a day. There is a stress on early intervention. The longer a child is left to engage in his/her own world the more difficult engagement with the “outside” world becomes. Integration with typical peers is also important.


TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children)

The principles and concepts guiding the TEACCH system have been summarized as:

Improved adaptation through the two strategies of improving skills by means of education and of modifying the environment to accommodate deficits.


TEACCH (cont)

Parent collaboration: parents work with professionals as co-therapists for their children so that techniques can be continued at home.

Assessment for individualized treatment: unique educational programs are designed for all individuals on the basis of regular assessments of abilities.


TEACCH (cont)

Structured teaching: it has been found that children with autism benefit more from a structured educational environment than from free approaches.

Skill enhancement: assessment identifies emerging skills and work then focuses upon these. (This approach is also applied to staff and parent training.)


Cognitive and behavior therapy: educational procedures are guided by theories of cognition and behavior suggesting that difficult behavior may result from underlying problems in

perception and understanding.

TEACCH (cont)


TEACCH (cont)

Generalist training:

Professionals in the TEACCH system are trained as generalists who understand the whole child, and do not specialize as psychologists, speech therapists etc.

(Extract from Approaches to autism: an annotated list published by The National Autistic Society, 1993 revised 2003).


Psychoactive Medication

Classes of medications:

Stimulants

Alpha Adrenergics

Noradrenergic Reuptake Inhibitor

Antidepressants

AntipsychoticsAnticonvulsantsOther medications


Complementary Alternative Treatments

Complementary and alternative treatments can include vitamin supplements, medications, antibiotics, antifungals, diet strategies, chelation/mercury detoxification, and non-biologic treatments for language and communication or for sensory problems.


Complementary Alternative Treatments

Complementary alternative medical and other biological treatments seem to relieve some symptoms, but there is no rigorous peer reviewed research supporting any of the treatments.

Make sure all your treatment professionals, especially your physicians, know the treatments given your child.

Avoid treatments with high risks and high costs.

You don’t have to pursue every treatment option.


Family Stressors

Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988).


Family Stressors

Lack of language can lead to problems with frustration both for the parents and the child. Frustrations can lead to tantrums and aggressive behavior towards self and others.


Family Stressors

Families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these issues and behaviors are physically exhausting for families and emotionally draining.


Family Stressors

Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.


Family Stressors

Parents of children on the autism spectrum may experience a sense of isolation from their friends, relatives and community.


Family Stressors

One of the most significant sources of stress is the concern regarding future care giving.


Family Stressors

Having a child on the autism spectrum can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. The caregiving demands of raising a child with autism may lead one parent to give up his or her job, yet financial strains may be exacerbated by only having one income to support all of the families' needs.


Family Stressors

Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (e.g., birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.


Family Stressors

There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of: • Embarrassment around peers. Jealousy regarding amount of

time parents spend with their brother/sister • Frustration over not being able to engage or get a response

from their brother/sister • Being the target of aggressive behaviors • Trying to make up for the deficits of their brother/sister • Concern regarding their parents stress and grief • Concern over their role in future caregiving


Strategies to Address Stress

• Individual, marital or family counseling• Joining others in advocacy efforts at the local, state or

federal level• Keeping a daily schedule of things to accomplish • Writing in a journal• Deep breathing / relaxation exercises / meditation• Exercise / yoga• Prayer

Above slides on Family Stressors adapted from ASA website Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children.


Listen

Remember parents are the experts on their child. Others may be expert on autism spectrum disorder, behavioral interventions, education, medication or the like but only the parents are expert with regards to their child with Autism Spectrum Disorder.


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