How My Boy Kicked Autism
Chapter 5 What Now?
My Boy Blank-27 months
Roll-up your sleeves baby boy, we have a plan and it is time for action! I know, I know, you hate when your sleeves are rolled up and things touch your skin, that is just an expression, abstract and confusing for you right now but isn’t everything when you are two? I mean, what is the big deal if you don’t talk yet, you are just a toddler and I can barely get in a word around here and I am an old man. But…in the event that there is an underlying “big deal” so to speak, let’s get back to the plan.
According to Melanie, the first thing your mom and I need to do is figure out what is going on inside of you but since we can’t figure it out, we need to call on some experts, one for your body and one for your brain.
They are going to give you all kinds of tests from head to toe that measure all kinds of things. They know how to look inside you and they are going to tell me and mom what they can see so we can see it too. I am nervous and excited but just know that once I can see you, I will better understand how to help you see me. We got this list of all different kinds of specialists and providers from Melanie. We have already spoken with many of them and decided to start with a clinical psychologist who specializes in autism. She is going to look at your brain through those sparkly blue eyes of yours. You will probably go back to her office a few times and she is also going to come to our house and play with you. Next month, she will send us a
Transcript
Psycho-Educational Assessment Report
“The first thing step is to get an independent diagnosis and assessment. A diagnosis is a prerequisite for eligibility for certain funding sources and may very well be disputed so where and from whom it comes is crucial. A psycho-educational assessment is designed to determine a child’s current level of intellectual, developmental, lingual, executive and adaptive functioning and to make recommendations for how to address same in the school, home and community environment. This assessment should be done from the beginning so that you will have a baseline of your child’s level of functioning prior to intervention. This is the basis upon which you will be able to track progress. Any time that your child is assessed by an entity with potential financial liability, the assessment fails to be independent. That is why it is imperative that the assessment is independent.”
He is going to look at what is in your belly and the rest of your body because what is happening in your brain affects everything else.
At 28 months, Dr. Bank, Licensed Clinical Psychologist, diagnosed Blank with Autism.
In 2007, the CDC released data that found about 1 and 150 children in the United States had an Autism Spectrum Disorder (ASD) meaning that three to six out of every 1,000 children in the United States have autism or a related disorder and the number of diagnosed cases is rising.
Autism is one of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood, usually before age 3 and can be detected as early as 18 months. Everyone develops at their own pace, and many children do not follow exact timelines found in some parenting books or at the same time as one another. As a spectrum disorder, symptoms can range from mild to severe and the level of developmental delay is unique to each child.
Children with autism usually show some signs of delayed development by 18 months. If you suspect that your child may have autism, discuss your concerns with your doctor. In fact, talk with your doctor about autism even before you are suspicious. The earlier treatment begins, the more effective it will be. An accurate diagnostic label is imperative because funding for appropriate intervention spans across the spectrum. For example, a program designed specifically for children with an autism diagnosis will produce greater benefits while the use of the general Pervasive Development Disorder (PDD) label can prevent children from obtaining services relative to their needs.
Pervasive Development Disorders (PDD)
The term “PDD” is widely used by professionals to refer to children with autism spectrum disorders, however, there is disagreement and confusion among professionals concerning the PDD label.
Diagnosis of PDD, including autism or any other developmental disability, is based upon the Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association (Washington, DC, 1994).
www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm
According to the DSM-IV, the term “PDD” is not a specific diagnosis, but an umbrella term under which the specific diagnoses are defined. The included specific diagnoses are Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rett’s Disorder, and Childhood Disintegrative Disorder.
Diagnostic labels are used to indicate commonalities among individuals. The key defining symptom of autism that differentiates it from other syndromes and/or conditions is substantial impairment in social interaction. The diagnosis of autism indicates that qualitative impairments in communication, social skills, and range of interests and activities exist.
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity
qualitative impairments in communication as manifested by at least one of the following:
delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
stereotyped and repetitive use of language or idiosyncratic language
lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
lack of social or emotional reciprocity
Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects
The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism” - presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.
All of the following:
apparently normal prenatal and perinatal development
apparently normal psychomotor development through the first 5 months after birth
normal head circumference at birth
Onset of all of the following after the period of normal development:
deceleration of head growth between ages 5 and 48 months
loss of previously acquired purposeful hand skills between 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
loss of social engagement early in the course ( although often social interaction develops later)
appearance of poorly coordinated gait or trunk movements
severely impaired expressive and receptive language development with severe psychomotor retardation
Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.
Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
expressive or receptive language
social skills or adaptive behavior
bowel or bladder control
play
motor skills
Abnormalities of functioning in at least two of the following areas:
qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
restricted, repetitive, and stereotyped patterns of behavior, interest, and activities, including motor stereotypes and mannerisms
The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia
(those can just all be links to http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm but i do think it is important information that I would like to have here
[DDET]
What Does Autism look like?
Children with autism generally have problems in three crucial areas of development — social interaction, language and behavior, however, the symptoms of autism vary so greatly that two children with the same diagnosis may act quite differently and have markedly different skills. The most severe autism is marked by a complete inability to communicate or interact with other people.
Some children show signs of autism in early infancy while other children develop neuro-typically at first and then all of a sudden lose language that they already acquired or become withdrawn and/or aggressive. Autism is a spectrum disorder so every child along the spectrum has a unique pattern of behavior. That being said, some hallmark characteristics of autism are (link here)
Poor eye contact
Non-response to name/stimuli/parent
Lack of social skills
Sensory Issues: resist holding, self-injurious behaviors, aversion to textures/smells/light, high pain threshold
No Executive Functioning: cause and effect, planning, self-control, abstract thinking
Solitary or Parallel Play: not interactive
Language Deficits: including talking later than other children, echolalia, receptive and expressive difficulties, abnormal tone/rhythm
Communication deficits: can not start, maintain conversation, no language to express needs, repetitive talk (perseveration), movie-talk
Maladaptive behaviors: hitting, throwing, spitting, lip-biting, skin-picking
Repetitive movements: rocking, hand-flapping, toe-walking, constant motion
Routine/Ritual Oriented (perseveration)
Not good with change: does not transition to novel situations well, detours, any deviation from norm
No sense of danger; Running away (elopement)
Fascination with objects/parts: spinning wheels, ceiling fan, trains
No Theory of Mind: Can not predict or understand behavior of others
The very nature of the characteristics of autism make it very difficult to form or maintain inter-personal relationships. These children are missing a skill set in early life that is critical to later development. Some children will become more engaged with others as they mature. For those children who do not, the teenage years sometimes show a worsening of behaviors.
Warning signs may be if your child does not:
babble or coo by 12 months
gesture by 12 months
say single words by 16 months
say two-word phrases by 24 months;
or if your child loses previously acquired language or social skills at any age
Make certain that your child’s doctor looks for signs of developmental delays at regular checkups. If your child shows some signs of autism, ask to be referred to a specialist in treating children with autism. This specialist, working with a multi-disciplinary team of professionals specifically trained in autism, can perform an independent assessment (baseline data and a formal evaluation and recommendations) for your child.
Because autism is a spectrum disorder, diagnosis may be difficult. There is no specific medical test to rely on. An independent assessment consists of an expert observing your child in all environments, and talking to your family about how your child’s social skills, language skills and behavior have developed and/or changed over time. This expert also reviews all prior testing, assessments, evaluations and medical history of your child. To help reach a diagnosis, your child will undergo a number of developmental tests covering speech, language, behavioral and psychological issues.
Although the signs of autism often appear by 18 months, the diagnosis sometimes isn’t made until age 2 or 3, once there are more obvious delays in language development and social interactions. Early diagnosis is important because early intervention — preferably before age 3 — is associated with the best chance for significant improvement or recovery.
The majority of children with autism show signs of lower than normal intelligence. These children learn slower than their typically developing peers. Children with autism with normal to high intelligence learn quickly, however, they show deficits in communication, generalization and socialization. A small number of children with autism are “autistic savants” and have exceptional skills in a specific area, such as art, math or music.
Good Question and the answer is We Don’t Know. There is no single known cause and because it is a spectrum disorder, there is feasibly a different cause for every child along the spectrum, so there is A LOT We Don’t Know.
Current research looks at genetic errors, environmental factors, and other causes such as childhood vaccines, labor and delivery complications, the role of the immune system, and the relationship to the intestine.
Genetic Errors
Some genes appear to make some children more susceptible to autism; Some genes affect brain development; Some genes affect the way brain cells communicate; Genetic errors are both inherited and spontaneous.
Sex: Boys are 4 times more likely than girls to develop autism.
Family history: Families who have one child with autism have an increased risk of having another child with autism. It is also common for the parents or relatives of an autistic child to have minor problems with social or communication skills themselves or to engage in certain autistic behaviors.
Other disorders: Children with fragile X syndrome( an inherited disorder that causes intellectual impairment); tuberous sclerosis (a condition in which benign tumors develop in the brain); Tourette syndrome (inherited neuropsychiatric disorder characterized by the presence of physical and vocal tics) and epilepsy (chronic neurological disorder characterized by recurrent, unprovoked seizures) all have a higher than normal risk of having autism.
Paternal age. Research suggests that men 40 years or older are almost six times more likely to have a child with an autism spectrum disorder than men under 30. Maternal age is shown to have little effect on autism risk.
Environmental factors such as infections agents, toxins, air pollutants, metals, chemicals and climate are being looked at. A recent study out of Cornell says that children growing up in the rainiest or snowiest areas of the country seem to have a higher risk for autism than children living in drier climates.
http://www.huffingtonpost.com/david-kirby/rain-autism-and-mercury_b_140753.html
In Minnesota, chemical exposure is being cited as a possible reason for 1 in every 28 Somali schoolchildren being diagnosed with autism.
http://www.ageofautism.com/2008/11/minnesota-and-t.html
Research for 12 studies of environmental factors is currently being funded by Autism Speaks, at $3.6 million dollars over the next 3 years, to look at toxicology, immunology, epigenetics and animal models.
http://www.autismspeaks.org/science/research/initiatives/environmental_factors.php
One of the greatest controversies in autism is whether a link exists between autism and certain childhood vaccines, particularly the measles-mumps-rubella (MMR) vaccine and vaccines with thimerosal, a preservative that contains mercury. Though most children’s vaccines have been free of thimerosal since 2001, the controversy continues and compelling evidence exists on both sides, depending on who you talk to. For a detailed reading of the controversy, refer to David Kirby’s “ Evidence of Harm, MERCURY IN VACCINES AND THE AUTISM EPIDEMIC: A MEDICAL CONTROVERSY.” http://www.evidenceofharm.com/
Besides Thimerosal, there are several well-recognized environmental agents which can trigger autism, such as thalidomide, valproic acid, terbutalene, and maternal rubella exposure.
ASDs occur in all racial, ethnic, and socioeconomic groups.