A Beginner's Guide to Autism Spectrum Disorder

Let me start off by saying, this is not meant to be an in depth analysis or explanation of autism or Autism Spectrum Disorder (ASD). In writing this, I hope to provide you with a general overview of the disorder, the diagnostic process including the recent, somewhat controversial, changes in the criteria,  and the additional IEP considerations that accompany such a disability. If you would like more in depth information regarding autism and ASD, check out Autism Speaks or the National Institute of Mental Health.

So, what is autism or ASD? 

Both are general terms used to describe a complex group of brain development disorders usually characterized by a lack of social and communication skills often accompanied by repetitive behaviors and/or limited interests. Symptoms manifest by age three but, if mild, may go undetected until later when learning, social or emotional issues arise. It is called a "spectrum" disorder because there is a great deal of variance in the number and severity of symptoms as well as the skill levels and level of impairment or disability that can be present. The chart to the right, provided by the Center for Disease Control and Prevention, illustrates the range of symptoms that might be present in one individual.

How is Autism defined under Part B of the Individuals with Disabilities Education Act? 

The Code of Federal Regulations states the legal definition of the disability of autism in the following terms:

(1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
(ii) Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section.
(iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied. (34 C.F.R. 300.8(c))

So, for a child to be eligible for services as a child with autism under the IDEA, the disability must

• significantly affect communication and social interaction AND 
• have an adverse affect on the child's educational performance.

It is important to note the primary focus of the CFR definition of autism is on communication and social interaction deficits; referring to the repetitive and stereotyped behaviors separately as "Other characteristics often associated with autism." They're not even required to have an adverse affect on educational performance. This may be an important distinction for those evaluated after the implementation of the DSM-V for reasons I will explain below in my discussion of diagnostic criteria.
(For more on general eligibility requirements under the IDEA, see my previous post here.)

How do I know if my child has an Autism Spectrum Disorder?

The latest report from the CDC estimates the number of parent-reported school-aged children diagnosed with ASD to be about 1 in 50. There is no medical test for it. A diagnosis is made by looking at the child's development and behavior. Parents or primary caregivers are often the first to notice unusual behaviors or developmental delays. If you have a young child and not sure what signs you should be looking for, check out the Communication and Symbolic Behavior Scales checklist. Any concerns you have should be reported to the child's pediatrician as soon as possible. According to the CDC, the diagnostic process should involve

• a developmental screening followed by 
• a complete and comprehensive evaluation.

What's involved in a developmental Screening?

A screening looks at whether there have been any delays or concerns raised regarding developmental milestones during the first two years of the child's life. Milestones include skills such as showing joyful expressions by the age of six months or babbling and back and forth gesturing (waving bye-bye) by 12 months. A pediatrician should check for developmental delays during those early years as part of the child's regular well-check visits. The CDC, as well as the American Academy of Pediatrics, recommends pediatricians specifically screen all children for Autism Spectrum Disorder using tools such as the Modified Checklist of Autism in Toddlers (M-CHAT) or the Screening Tool for Autism in Toddlers and Young Children (STAT) at 18 AND 24 months of age to determine if they are at risk.

Here is a Fact Sheet provided by the CDC on Developmental Screenings.
If you would like to take the M-CHAT, Autism Speaks provides parents with an online version here. If the results of such screenings indicate a risk of ASD, a comprehensive evaluation must be completed.

What is involved in a comprehensive evaluation for ASD?

There are several tools available to clinicians for assessing ASDs in young children including, but not limited to:

• Autism Diagnostic Interview or Autism Diagnostic Interview – Revised (ADI/ADI-R), 
• Developmental, Dimensional and Diagnostic Interview (3di), 
• Diagnostic Interview for Social and Communication Disorders (DISCO), 
• Autism Diagnostic Observation Schedule (ADOS) and 
• Gilliam Autism Rating Scale (GARS) 

As with any comprehensive evaluation, no single assessment tool should constitute the sole basis for a diagnosis.

What criteria are used in a comprehensive evaluation for Autism Spectrum Disorder?

Presently, the most popular tool used by clinicians to diagnose ASD is the Diagnostic and Statistical Manual of Mental Health Disorders or DSM published by the American Psychiatric Association. Since its initial publication in 1952, the DSM has been updated several times. In prior versions of the manual, there were several distinct disorders articulated on the autism spectrum including; Autistic Disorder or "classic" autism,  Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Childhood Disintegrative Disorder. However,  in their continuing efforts to increase reliability in diagnosis, the fifth edition of the DSM (aptly called the DSM-V), released in May of 2013 eliminated these subcategories merging them into one general Autism Spectrum Disorder and adding a new and separate Social (Pragmatic) Communication Disorder (SCD).

In addition to the name change, the DSM-V includes some significant changes in the criteria used to diagnose ASD. In prior versions such as the DSM-IV, a diagnosis of an ASD was given if the child exhibited six out of twelve symptoms across three categories;

1. impairment in language/communication, 
2. social impairment and 
3. repetitive behaviors/limited interests.

There was no requirement that children exhibit symptoms in all three categories. In other words, if the child demonstrated four symptoms relating to an impairment in social interaction and two symptoms of a communication deficit but no symptoms of any repetitive behaviors, the child would still have received a diagnosis of an autistic disorder such as PDD-NOS. That is no longer the case.

The DSM-V includes the following significant changes in the diagnostic criteria for Autism Spectrum Disorder:

• combines the first two categories into a single social communication impairment, 
• lowers the required number of symptoms to be exhibited from six to five, 
• requires at least two of the symptoms be in the area of repetitive behaviors/limited interests, 
• requires social communication symptoms be persistent and ongoing while an individual need only have a history of symptoms of repetitive behaviors or limited interests and 
• requires clinicians to include specifics for each individual diagnosed with ASD such as age of onset, severity of impairment, presence of any intellectual or language disability and any co-existing or genetic conditions present.

If a child is found to have social and communication deficits but does not have a history of any repetitive behaviors or restriction in areas of interest, the DSM-V requires s/he be evaluated for the newly added Social (Pragmatic) Communication Disorder.
If you would like to read more about the DSM-V diagnostic criteria for ASD and SCD, check out the information provided by Autism Speaks here.

OK, we have a diagnosis of Autism Spectrum Disorder, what now?

There is no "cure" or set treatment plan for ASD. Since it affects each child differently, treatment and intervention plans must be tailored to meet each child's unique needs. Such plans may include behavioral therapy, medication or both to address the core symptoms. Early intervention with intense behavioral therapy has been shown to improve the learning, social and communication skills in young children with ASD. For more information on available therapy and treatment options click here.

Part C of the Individuals with Disabilities Act applies to infants and children under the age of 3 with disabilities or "at risk" of experiencing substantial developmental delays and requires the provision of early intervention services such as:

(i) family training, counseling, and home visits;
(ii) special instruction;
(iii) speech-language pathology and audiology services, and sign language and cued language services;
(iv) occupational therapy;
(v) physical therapy;
(vi) psychological services;
(vii) service coordination services;
(viii) medical services only for diagnostic or evaluation purposes;
(ix) early identification, screening, and assessment services;
(x) health services necessary to enable the infant or toddler to benefit from the other early intervention services;
(xi) social work services;
(xii) vision services;
(xiii) assistive technology devices and assistive technology services; and
(xiv) transportation and related costs that are necessary to enable an infant or toddler and the infant’s or toddler’s family to receive another service described in this paragraph (20 U.S.C. 1432(4)(E)).

For information on finding early intervention services in your area click here.

Children three years and older should be evaluated for Special Education and Related Services under Part B of the IDEA.

What, if any, strategies should be considered by the team when developing an Individualized Education Plan for a student with ASD? 

As with any other disability, students with ASD should have an IEP tailored to address each child's unique needs taking into account their strengths, parental concerns, evaluation results and academic, developmental and functional deficits. In addition, the IEP team is required to consider certain special factors under 20 U.S.C. 1414(3)(b) including behavior intervention, communication, vision, language and assistive technology needs when developing a child's IEP.

In Texas, these "special factors" have been expanded specifically to address the needs of children with ASD. The ARD committee must consider the following eleven research-based strategies when developing an IEP for a child with Autism Spectrum Disorder:

(1) extended educational programming (for example: extended day and/or extended school year services that consider the duration of programs/settings based on assessment of behavior, social skills, communication, academics, and self-help skills);

(2) daily schedules reflecting minimal unstructured time and active engagement in learning activities (for example: lunch, snack, and recess periods that provide flexibility within routines; adapt to individual skill levels; and assist with schedule changes, such as changes involving substitute teachers and pep rallies);

(3) in-home and community-based training or viable alternatives that assist the student with acquisition of social/behavioral skills (for example: strategies that facilitate maintenance and generalization of such skills from home to school, school to home, home to community, and school to community);

(4) positive behavior support strategies based on relevant information, for example:

(A) antecedent manipulation, replacement behaviors, reinforcement strategies, and data-based decisions; and
(B) a Behavior Intervention Plan developed from a Functional Behavioral Assessment that uses current data related to target behaviors and addresses behavioral programming across home, school, and community-based settings;

(5) beginning at any age, consistent with subsections (g) of this section, futures planning for integrated living, work, community, and educational environments that considers skills necessary to function in current and post-secondary environments;;
(6) parent/family training and support, provided by qualified personnel with experience in Autism Spectrum Disorders (ASD), that, for example;

(A) provides a family with skills necessary for a child to succeed in the home/community setting;
(B) includes information regarding resources (for example: parent support groups, workshops, videos, conferences, and materials designed to increase parent knowledge of specific teaching/management techniques related to the child's curriculum); and
(C) facilitates parental carryover of in-home training (for example: strategies for behavior management and developing structured home environments and/or communication training so that parents are active participants in promoting the continuity of interventions across all settings);

(7) suitable staff-to-student ratio appropriate to identified activities and as needed to achieve social/behavioral progress based on the child's developmental and learning level (acquisition, fluency, maintenance, generalization) that encourages work towards individual independence as determined by, for example:

(A) adaptive behavior evaluation results;
(B) behavioral accommodation needs across settings; and
(C) transitions within the school day;

(8) communication interventions, including language forms and functions that enhance effective communication across settings (for example: augmentative, incidental, and naturalistic teaching);

(9) social skills supports and strategies based on social skills assessment/curriculum and provided across settings (for example: trained peer facilitators (e.g., circle of friends), video modeling, social stories, and role playing);

(10) professional educator/staff support (for example: training provided to personnel who work with the student to assure the correct implementation of techniques and strategies described in the IEP); and

(11) teaching strategies based on peer reviewed, research-based practices for students with ASD (for example: those associated with discrete-trial training, visual supports, applied behavior analysis, structured learning, augmentative communication, or social skills training) (19 TAC 89.1055(e)).

Additionally, if the ARD committee determines it unnecessary to implement any of the listed strategies, the IEP must include a statement to that effect and the basis upon which the determination was made.  To see if your State requires any special considerations for children with ASD, check your State's Administrative Code or contact the State Board of Education.

What does the DSM-V mean for children already receiving Special Education and Related Services based on a prior diagnosis of Asperger Syndrome or PDD-NOS?

It should mean nothing. As I stated earlier, the DSM is only one tool and should not be the sole basis for diagnosis or exclusion of Autism Spectrum Disorder. In addition, the DSM-V applies to subsequent diagnoses only.  The Work Group responsible for this portion of the DSM-V stated their intention in making these changes was to more accurately reflect the variable nature of autism not to exclude groups of individuals from the diagnosis. They predicted very little effect on the prevalence of, or number of people diagnosed with ASD. In fact, the DSM-V specifically states anyone with a "well-established" DSM-IV diagnosis of Asperger Syndrome or PDD-NOS should be given the diagnosis of Autism Spectrum Disorder.

Can a re-evaluation for eligibility be required on the basis of the new DSM-V diagnostic criteria?

No. There must be a valid clinical or legal basis for requiring any re-evaluation for services under the IDEA. If a re-evaluation is necessary for clinical or legal reasons, the DSM-V is only one of several factors which are to be considered.

Organizations like Autism Speaks and the Organization for Autism Research continue to fund research projects focused on causes, effective treatments and hopefully, one day, a cure for autism spectrum disorder. In the meantime, there are many resources available on their websites to families looking for information, help and support.