Raising a Child with Autism: Raising a Child with Autism: One Mother’ ’s Journey s Journey One Mother With Helpful Lessons for Others With Helpful Lessons for Others Masters Project Presentation Masters Project Presentation th , 2010 by Tamara F. Phillips February 6 th by Tamara F. Phillips February 6 , 2010
Overview of Presentation Overview of Presentation � Description of Autism � Description of Autism � The day to day emotional challenges of � The day to day emotional challenges of parents raising children diagnosed with parents raising children diagnosed with autism: My Personal Journey autism: My Personal Journey � Impact on parent functioning: The losses � Impact on parent functioning: The losses and gains and gains � Chronic stressors: Daily and future � Chronic stressors: Daily and future � Coping mechanisms: Positive and negative � Coping mechanisms: Positive and negative
Does Anyone Know How Prevalent Autism Does Anyone Know How Prevalent Autism Spectrum Disorder is in America Today? Spectrum Disorder is in America Today?
ASD Prevalence in America ASD Prevalence in America According to the CDC in a 2009 report: According to the CDC in a 2009 report: � 1 in 110 American children � 1 in 110 American children � 1 in 70 American boys � 1 in 70 American boys
Understanding the Labels Understanding the Labels � Pervasive developmental disorders (PDD) 299 Pervasive developmental disorders (PDD) 299 � � � 299.00 Autism 299.00 Autism � 299.80 Asperger syndrome � 299.80 Asperger syndrome � � 299.80 Rett syndrome 299.80 Rett syndrome � 299.10 Childhood disintegrative disorder � 299.10 Childhood disintegrative disorder � 299.80 Pervasive developmental disorder not � 299.80 Pervasive developmental disorder not otherwise specified (PDD- -NOS) NOS) otherwise specified (PDD
Definition of Autism Definition of Autism � Autism is a developmental disability that is Autism is a developmental disability that is � diagnosed based on three areas of disorder (as diagnosed based on three areas of disorder (as opposed to simply delay). These areas are opposed to simply delay). These areas are defined by the American psychiatric association defined by the American psychiatric association in the DSM- -IV as: IV as: in the DSM 1. Qualitative impairment in social interaction 1. Qualitative impairment in social interaction 2. Qualitative impairment in communication Qualitative impairment in communication 2. 3. Restricted, repetitive, and stereotyped 3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. patterns of behavior, interests, and activities.
Additional Characteristics Additional Characteristics � Repeated body movements: hand flapping � Repeated body movements: hand flapping � Unusual responses to people: � Unusual responses to people: like an object like an object � Resistance to change in Routine: Patterns � Resistance to change in Routine: Patterns � Cognitive levels vary � Cognitive levels vary � Physical symptoms: � Physical symptoms: Immune system, Immune system, digestive problems, Sensory system digestive problems, Sensory system
Patterns of Development 120 Typical development 100 autism 80 Developmental delay 60 Motor IQ lang.comp lang.expr social memory
Characteristics of ASD Characteristics of ASD
Sensory Diet Sensory Diet � � Foods that are calming Foods that are calming � � Warm Warm � � Smooth Smooth � � Sweet Sweet � � Foods that are alerting Foods that are alerting � � Cold Cold � � Sour/tart Sour/tart � � Spicy Spicy � � Minty Minty � � Crunchy Crunchy � � Chewy Chewy � � Salty Salty � � Crunchy Crunchy- -pretzels pretzels � � Chewy Chewy- -tubing tubing � � Sucking Sucking- -water bottle water bottle � � Biting Biting- -apple, carrot apple, carrot � � Pulling Pulling- -licorice strings licorice strings � � Fruit roll ups Fruit roll ups � � Salty Salty- -chips, popcorn chips, popcorn � � Blowing Blowing- -through a straw through a straw � � Sweet Sweet- -candy or dried fruit candy or dried fruit � � Sour Sour- -candy or pickle candy or pickle � � Spicy Spicy- -cinnamon or salsa cinnamon or salsa � � Licking Licking- -lollipop or lollipop or � � Popsicle Popsicle � � Gum Gum
Stay Alert Stay Alert Sensory Diet – – Tactile Activities Tactile Activities Sensory Diet � Sensory Bins � Sensory Bins – – rice, beans, corn, sand, cotton balls, rice, beans, corn, sand, cotton balls, water water � “Brushing Brushing” ” � “ � Hugs � Hugs � � Deep pressure Deep pressure � Shaving cream � Shaving cream � � Lotion Lotion � � Ball pit Ball pit � Fidgets � Fidgets
Areas of Intense Interest Areas of Intense Interest Examples: Examples: � Trains � Trains � Maps � Maps � Sports facts � Sports facts � Toilets � Toilets � ATM machines � ATM machines � The number Pi � The number Pi � Roller coasters � Roller coasters
Who Is This? Who Is This? (Example of restricted, repetitive interests) (Example of restricted, repetitive interests)
Dante Basco Dante Basco
Obsessions and Fantasies Obsessions and Fantasies
From Bad to Worse! From Bad to Worse!
Circles Program for Boundary Awareness Circles Program for Boundary Awareness (Impaired social Interaction) (Impaired social Interaction) � Purple Circle: Self Purple Circle: Self � � Blue Circle: Hugs are usually ok, sometimes a kiss on Blue Circle: Hugs are usually ok, sometimes a kiss on � the cheek (Family and very close Family Friends) the cheek (Family and very close Family Friends) � Green Circle: I can give side hugs to these people (Close � Green Circle: I can give side hugs to these people (Close staff, Friends I know really, really well). staff, Friends I know really, really well). � Yellow Circle: I see these people a lot. I can give them � Yellow Circle: I see these people a lot. I can give them a High 5 or a hand shake. a High 5 or a hand shake. � Orange Circle: I don Orange Circle: I don’ ’t see these people very often. I t see these people very often. I � can wave or say hello when I see them. This could be can wave or say hello when I see them. This could be the mail carrier or worker in the store. the mail carrier or worker in the store. � Red Circle: These people are strangers and I don Red Circle: These people are strangers and I don’ ’t know t know � them at all. Most of the time I do not talk to strangers them at all. Most of the time I do not talk to strangers about anything. about anything.
Current Treatment Options Current Treatment Options Are Child Focused Focused Are Child � Applied Behavior Analysis (ABA) � Applied Behavior Analysis (ABA) � Relationship Development Intervention � Relationship Development Intervention (RDI) (RDI) � Floortime � Floortime � Bio � Bio- -medical treatment medical treatment � Pharmacology � Pharmacology � Others � Others
Meds and Supplements Meds and Supplements
What Happens After the Diagnosis What Happens After the Diagnosis
How ASD Impacts Parents How ASD Impacts Parents � Current treatment options focus on the Current treatment options focus on the � diagnosed child diagnosed child � Parents lack understanding of their own feelings Parents lack understanding of their own feelings � � Individuals may experience different feelings � Individuals may experience different feelings from spouse from spouse � Isolate and drift apart � Isolate and drift apart � Parents experience increased and chronic stress Parents experience increased and chronic stress � � Couples experience increased marital discord � Couples experience increased marital discord
Common Feelings Common Feelings experienced by parents experienced by parents � � Exhaustion: Lack sleep, emotionally spent Exhaustion: Lack sleep, emotionally spent � � Overwhelmed: Too many responsibilities Overwhelmed: Too many responsibilities � � Inadequate: About own skills Inadequate: About own skills � � Hopeless: Will things ever get better? Hopeless: Will things ever get better? � � Resentful: Of those who have typical children Resentful: Of those who have typical children � � Fearful: For child about future or in community Fearful: For child about future or in community � � Anger: Masking another feeling Anger: Masking another feeling � � Grief: Extreme sadness, Difficulty coping Grief: Extreme sadness, Difficulty coping � � Blame: Self for child’ ’s disability s disability Blame: Self for child � � Guilt: Did I do something wrong? Guilt: Did I do something wrong? � � Abandonment: Emotionally or physically isolated Abandonment: Emotionally or physically isolated � � Lonely: Lack of understanding from others or few friends Lonely: Lack of understanding from others or few friends � � Disappointment Disappointment � � Embarrassment Embarrassment � � Judged Judged
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