The Quick Start CAREkit

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What is autism?

Autism is a developmental disability that typically appears during the first three years of life. The result of the neurological disorder that affects functioning of the brain, autism and its associated behaviors, are reported to occur in as many as one in one hundred sixty six children born each year. Autism is four times more prevalent in boys than girls and knows no racial, ethnic or social boundaries. Family income, lifestyle and educational levels do not affect the chance of autism's occurrence. Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interactions and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (such as, hand flapping or rocking), unusual responses to people or attachments to objects and resist any changes in routine. In some cases, aggressive and / or self-injurious behavior may be present.

--Autism Society of America, 1997

 

Diagnostic Criteria

The DSM IV Criteria for the Autistic Disorders

The diagnostic criteria for the autistic (PDD) disorders are defined by the DSM IV criteria.

Childhood autism

1. 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):
   
   
   1. 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
   2. 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
   3. 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 mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
      • persistent preoccupation with parts of objects
2. 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.
3. The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.

Asperger's syndrome
A total of two (or more) items from (1), and at least one from (2):

1. 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 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 mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
   • persistent preoccupation with parts of objects
   • or emotional reciprocity
2. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
   • The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
   • There is no clinically significant delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
3. 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.
4. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

Rett's disorder
All of the following:

• apparently normal prenatal and perinatal development
• apparently normal psychomotor development through the first five 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 ages 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

Childhood disintegrative disorder
Apparently normal development for at least the first two years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior

1. 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
2. Abnormalities of functioning in at least two of the following areas:
   • impairment in social interaction (e.g., impairment in nonverbal behaviors, lack of peer relationships, lack of social or emotional reciprocity)
   • qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate / sustain a conversation, stereotyped or repetitive use of language, lack of make-believe play)
   • restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. 3. The disturbance is not better accounted for by another specific pervasive developmental disorder or by schizophrenia.

PDD NOS

This category may be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal/nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, 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.

 

Diagnostic Resources

If you’ve come this far in your Quick Start CAREKit and have reason to suspect that you’ll now need to reach out to professionals to help you take the next steps - below are some of the key professional resources that you’ll need to contact and continue to partner with in your difficult journey ahead.

• Connecticut Birth to Three If you child is under the age of 3 years old, contact your early intervention state agency for assistance and resources to begin an intervention program ASAP. And even if your child is over 3 years old, your local Birth to Three contact may be able to put you in touch with other local service providers to help develop an intervention program for your child.
  
• Your pediatrician can give you contact information for a local Birth to Three service provider.
• Google search tip:“birth to three” + “Your state” + “early intervention”
  
• Health Insurance Company - if your child has health insurance, it is a good practice to contact the provider as soon as you have a diagnosis. While most insurance companies do not provide benefits to cover Applied Behavior Analysis (ABA) type services, speech and occupational therapies are sometimes considered an insured health benefit. This is important information for the parent/guardian to have.
  
• Pediatric Neurologist - preferably with a specialty in autism. Neurology is the branch of medical science that deals with the nervous system and its disorders. Partnering with a medical professional who can provide information, treatment recommendations, and report the progress of a child’s intervention program through regularly scheduled visits can be a major asset to your program.
  
• State Families for Early Autism Treatment (FEAT) website - most states have a wonderful resource called FEAT. Oftentimes, their websites have a broad array of information on a variety of pertinent topics such as, intervention resources, workshops and links to service providers just to name a few.
  • Google search tip: “FEAT” + “Your state” or “Families for Early Autism Treatment” + “Your State”
    
• National, State and/or local chapters of the Autism Society of America> (ASA) - ASA’s mission is to promote access, opportunity, education and advocacy for all individuals on the autism spectrum. Here again, like FEAT you will find information that can be most helpful.
• Google search tip: “Autism Society of America” (for the national society) and “autism society” + “Your state” (for you local chapter)