Autism Spectrum Disorders - a Life Cycle Approach

From Diagnosis to Old Age

Diagnosis

Autism Spectrum Disorder 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.

Classic Autism A child labeled today as having an Autism Spectrum Disorder may look very different from the child diagnosed 30 years ago with Infantile 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.

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.”

MCHAT Please fill out the following about how your child usually is. Please try to answer every question. If the behavior is rare (e.g. you've seen it once or twice), please answer as if the child does not do it. 1. Does your child enjoy being swung, bounced on your knee, etc.? Yes No 2. Does your child take an interest in other children? Yes No 3. Does your child like climbing on things, such as up stairs? Yes No 4. Does your child enjoy playing peek-a-boo/hide-and-seek? Yes No 5. Does your child ever pretend, for example, to talk on the phone or take care of dolls or pretend other things? Yes No 6. Does your child ever use his/her index finger to point, to ask for something? Yes No 7. Does your child ever use his/her index finger to point, to indicate interest in something? Yes No 8. Can your child play properly with small toys (e.g. cars or bricks) without just mouthing, fiddling, or dropping them? Yes No 9. Does your child ever bring objects over to you to show you something? Yes No 10. Does your child look you in the eye for more than a second or two? Yes No 11. Does your child ever seem oversensitive to noise? (e.g., plugging ears) Yes No

MCHAT (cont) 12. Does your child smile in response to your face or your smile? Yes No 13. Does your child imitate you? (e.g., you make a face-will your child imitate it?) Yes No 14. Does your child respond to his/her name when you call? Yes No 15. If you point at a toy across the room, does your child look at it? Yes No 16. Does your child walk? Yes No 17. Does your child look at things you are looking at? Yes No 18. Does your child make unusual finger movements near his/her face? Yes No 19. Does your child try to attract your attention to his/her own activity? Yes No 20. Have you ever wondered if your child is deaf? Yes No 21. Does your child understand what people say? Yes No 22. Does your child sometimes stare at nothing or wander with no purpose? Yes No 23. Does your child look at your face to check your reaction when faced with something unfamiliar? Yes No © 1999 Diana Robins, Deborah Fein, & Marianne Barton Please 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.

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. No 2. NO 7. NO 12. No 17. No 22. Yes 3. No 8. No 13. NO 18. Yes 23. No 4. No 9. NO 14. NO 19. No 5. No 10. No 15. NO 20. Yes

Reactions to Diagnosis

“With the diagnosis of an autistic child, parents were reported to experience complex feelings that include the feeling of losing a loved one. The reaction to a loss has patterns of shock, denial, depression, and acceptance in adults. Guilty feelings, depression, and anxiety …. The increase in the severity of the disability results in a more dependent child, more responsibility for the parents, and therefore more anxiety in the parents.”

Parents of an autistic child experience additional anxiety due to difficulty in sustaining social relationships, delay or absence of speech development, stereotypical actions, hyperactivity, and lack of eye contact. Parents of autistic children report being more withdrawn and uneasy than mothers of typically developing children.

Additionally, parents of children with autism report suffering from emotional disturbance, sensitivity, and frustration from criticism.

Parents of autistic children report limited friendships. A child’s deficits in social skills, such as the lack of appropriate play, increases stress for families; individuals lacking appropriate play skills often require constant structure of their time, a task difficult to achieve in the certain settings.” Copyright © 2004 Bright Tots® Inc. - Educational Toys & Resource Guide to Child Development - All rights reserved.

Interventions There are three well know programs of intervention ABA DIR/Floortime TEEACH And there are Many that have Components of Each of these

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, IndividualDifference, RelationshipBased)/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.)

TEACCH (cont) 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) 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).

Considering Pharmacologic Intervention Why would we consider using psychopharmacologic agents to treat problems in a person with Autism Spectrum Disorder (ASD)? – Treatment of core symptoms – Maladaptive behaviors sometimes seen in ASD – Treatment of coexisting psychiatric problems

Core Symptoms of ASD Problems with Social Relatedness Problems with Language Problems with fixations, repetitive behaviors and rigidity.

Coexisting Psychiatric Problems ADHD OCD Tics/Tourette’s Disorder Anxiety Disorders Mood Disorders – Depressive Disorders – Bipolar Disorder Psychosis

Maladaptive Symptoms/Behaviors sometimes seen in ASD There are behaviors that do not easily fit a particular psychiatric diagnosis that occur in ASD.

– Aggression – Severe tantrums and agitation – Self Injurious Behaviors – Sleep Disturbance – Rigidity – Perseveration

Beyond typical psychotropics -Other Pharmacologic Interventions for ASD Core Symptoms with some Promising Evidence Oxytocin – Hollander et al., 2003 15 adults with autism Vancomycin- Sandler et al., 2000 10 children open study blinded video evaluation 8 children improved Minocycline- being studied National Institute of Health Clinical Centers funded by the NIMH D-Cyclosporine –Posey et al., 2004 2 week single blind placebo treatment with 10 subjects Vitamin C- Dolske et al., 1993 decreasing stereotyped behaviors in a 30 week double blind study with 18 children Cyanocobalamine (B-12) - James et al., 2004 Cypropheptadine- S. Akhondzadeh, PhD et al., 2004 Rapamycin

Complementary Alternative Treatments Complementary and alternative treatments can include vitamin supplements, medications, antibiotics, antifungals, diet strategies, chelation/mercury detoxification, and nonbiologic 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.

Nutrition and Exercise Kids with developmental disabilities don’t eat well Activity levels wax and wane Food becomes a way for others to interact Size leads to discrimination

What to do about School After diagnosis and early struggles with interventions and behavior, school becomes the battle ground for most parents of children with Autism.

Public versus Private Time, Money and Sanity These are the issues related to school placement Every year brings new challenges There is little or no help from the system which by its nature is adversarial

The Curriculum

Academic versus non Academic Struggles related to school “scores” Classroom Placement

Social Development Community, Friends, Support

Staying Put Developing a network

Sex and Relationships

Sexual Activity Biologic drives and attractions happen Sexuality will be expressed To often we wait until after puberty, until after there is a problem to address issues Be blunt and factual Help your adolescent or young adult with ASD choose appropriate romantic interests Provide an outlet for practice of social/dating skills

Transition to Adulthood Adult Sexual Relationships and/or marriage may be an option Issues related to forced sterilization Raising children What happens in group living? Advocating for your adult child

Common Concerns Menses Education and Practice Hormonal Manipulation Who is it a problem for? What is the real concern?

Erections They happen Clear non euphemistic discussions Explain what to do The types of clothes that are best

Masturbation Inappropriate Masturbation Excessive Masturbation Inability to Masturbate to Satisfaction

Other Common Concerns Inappropriate touching of other people Exposing private body parts

Leaving Home (or not) The Stress of planning for the future Consideration related to ability to care for self Safety Work Money

Chronic Grief 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 care giving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.

To Work and To Love

"Love and work are the cornerstones of our humanness. "