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Service Implications of the DSM-5 for Autistic People Across the Lifespan
Service Implications of the
DSM-5 for Autistic People
Across the Lifespan
of the DSM-5 for Autistic People Across the Lifespan The Autistic Self Advocacy Network 1667 K

The Autistic Self Advocacy Network 1667 K St. Suite 640 • Washington, DC 20035

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aproject of

Network 1667 K St. Suite 640 • Washington, DC 20035 Voice: (202) 596-1056 www.autisticadvocacy.org aproject of
Network 1667 K St. Suite 640 • Washington, DC 20035 Voice: (202) 596-1056 www.autisticadvocacy.org aproject of

DSM-5 Key ASD Changes

Consolidation of three autism spectrum

diagnoses into a single ASD diagnosis;

Shift from three domains (social interaction, communication and restricted, repetitive

behaviors) to two (social communication and

restricted, repetitive behaviors)

Addition of a “severity scale”

Creation of “Social Communication Disorder”

diagnosis

DSM-5 Autism Spectrum

Disorder Criteria

A) Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1) Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2) Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding use of gestures; to a total lack of facial expressions and nonverbal communication.

3) Deficits in developing, maintaning, and understanding relationships, ranging, for example,

from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

DSM-5 Autism Spectrum

Disorder Criteria

B) Restricted, repetitive patterns of behavior, interests, or activities, as

least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

manifested by at

1) Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties

with transitions, rigid thinking patterns, greeting rituals, need to take some route or

eat same food every day).

3) Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests

4) Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

DSM-5 Autism Spectrum

Disorder Criteria

C) Symptoms must be present in the early developmental period (but may not become fully

manifest until social demands exceed limited capacities, or may be masked by learned

strategies in later life).

D) Symptoms cause clinically significant impairment in social, occupational, or other

important areas of current functioning.

E) These disturbances are not better explained by intellectual disability (intellectual

developmental disorder) or global developmental delay. Intellectual disability and autism frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be well below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of Autism Spectrum Disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Service Provision Systems

Impacted

Medicaid-financed I/DD services

ADA/504 Civil Rights Protections

IDEA Eligibility in Public Schools

SSI/SSDI Eligibility and Related Programs

Medicaid and I/DD Services

Several state Medicaid waivers for children or adults are autism-

specific (i.e: Pennsylvania, Maryland, Colorado, Wisconsin, etc.);

Some serve all autism diagnoses others currently exclude those with Asperger’s and PDD-NOS;

Not all state definitions of developmental disability include all

autism diagnoses;

Shift to unified diagnosis likely to improve eligibility for services for those with Asperger’s and PDD-NOS;

Level of Care/Functional Eligibility requirements remains substantial obstacle for access to services unrelated to DSM-5

ADA/504 Civil Rights Protections

ADA and 504 do not mention specific disabilities in the statute;

They define disability through a functional standard – “a physical or mental impairment that substantially limits one or more major life activities”

However, EEOC regulations do mention examples of disabilities ‘presumed to be covered’ under the ADA, including autism.

Risk exists that if people are shifted from an autism spectrum

diagnosis to an SCD or other non-ASD diagnosis, they will have more difficulty asserting ADA/504 protections

IDEA Eligibility

IDEA lists 14 categories of disability in the law, including autism;

Educational definition of autism differs from the medical definition:

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 engaging in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term autism does not apply if the child’s educational performance is adversely affected primarily because the child has an emotional disturbance.”

Someone can meet educational definition of autism without a medical diagnosis but practically, it helps to have a dx.

For those whose diagnoses shifts from Asperger’s or PDD-NOS to

ASD, it will likely be easier to qualify for IDEA services under DSM-5

For those whose diagnosis shifts to SCD or other non-autism

diagnosis, it may prove harder to qualify for services.

SSI/SSDI

Income support programs but also interconnected with access to public health insurance (i.e: SSI=Medicaid, SSDI after a 2 year waiting period = Medicare, Medicaid Buy-In utilizes a modified SSI

eligibility standard)

SSI/SSDI & Medicaid Buy-In application processes all require an applicant to have a condition on SSA Medical listings or one “equal

in severity” to a condition found in Medical Listings;

SSA Medical Listings include “Autistic disorder and other pervasive developmental disorders” and list out a SSA definition of these;

While an ASD diagnosis is not required, it will likely improve ease of application. Those who apply with an SCD diagnosis may face greater difficulty, given lack of inclusion of SCD in medical listings.

ASAN Engagement on DSM-5

Issued two public policy briefs analyzing service

implications of DSM-5 and recommending specific

changes to draft criteria;

Met regularly with APA Neurodevelopmental

Workgroup members to advocate for inclusive ASD

criteria;

Secured key changes in criteria and severity scale

language and inclusion of important information in

accompanying text.

DSM-5 Autism Spectrum

Disorder Criteria

A) Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1) Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2) Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding use of gestures; to a total lack of facial expressions and nonverbal communication.

3) Deficits in developing, maintaning, and understanding relationships, ranging, for example,

from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

DSM-5 Autism Spectrum

Disorder Criteria

B) Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1) Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties

with transitions, rigid thinking patterns, greeting rituals, need to take some route or

eat same food every day).

3) Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests

4) Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

DSM-5 Autism Spectrum

Disorder Criteria

C) Symptoms must be present in the early developmental period (but may not become fully

manifest until social demands exceed limited capacities, or may be masked by learned

strategies in later life).

D) Symptoms cause clinically significant impairment in social, occupational, or other

important areas of current functioning.

E) These disturbances are not better explained by intellectual disability (intellectual

developmental disorder) or global developmental delay. Intellectual disability and autism frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be well below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of Autism Spectrum Disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Accompanying Text Includes:

“Core diagnostic features are evident in the developmental period, but intervention, compensation, and current supports may mask difficulties in at least some contexts.”

“Diagnoses are most valid and reliable when based on multiple sources of information including clinician’s observations, caregiver history, and, when possible, self-report.”

“Some individuals come for first diagnosis in adulthood, perhaps prompted by

the diagnosis of autism in a child in the family or a breakdown of relations at work or home. Obtaining developmental history in such cases may be difficult,

and it is important to consider self-reported difficulties.

“Many adults with autism spectrum disorder without intellectual or language disabilities learn to suppress repetitive behavior in public. Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life. Diagnostic criteria may be met when

restricted, repetitive patterns of behavior, interests, or activities were clearly

present during childhood or at sometime in the past, even if symptoms are no

longer present.”

“Many adults report using compensation strategies and coping mechanisms to mask their difficulties in public but suffer from the stress and effort of maintaining a socially acceptable façade.”

Accompanying Text Includes:

Culture-Related Diagnostic Issues Cultural differences will exist in norms for social interaction, nonverbal communication, and relationships, but individuals with autism spectrum disorder are markedly impaired against the norms for their cultural context. Cultural and socioeconomic factors may affect age at recognition or diagnosis; for example, in the United States, late or underdiagnosis of autism spectrum disorder among African American children may occur.

Gender-Related Diagnostic Issues Autism spectrum disorder is diagnosed four times more often in males than in females. In clinic samples, females tend to be more likely to show accompanying intellectual disability, suggesting that girls without accompanying intellectual impairments or language delays may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties.

Severity Scale

ASAN opposed a severity scale, but when unable to eliminate it, secured a few significant changes.

Rather than “Mild, Medium or High” scale categories are,

“Requiring very substantial support, requiring substantial support

and requiring support.”

Text clarifies “severity may vary by context and fluctuate over time.”

“Severity of social communication difficulties and restrited, repetitive behaviors should be separately rated.”

Text clarifies severity scale “should not be used to determine

eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities

and targets.”

Specifically acknowledges uneven intellectual profile of Autistic

children and adults, notes importance of separate estimates of

verbal & nonverbal skills (i.e: using untimed nonverbal tests to assess potential strengths in individuals with limited language)

Shifted RRBI severity from “redirection from fixated interest” to a focus on flexibility, executive function and difficulties with transition

Where We Failed to Secure Changes

Advocated for moving to requiring only 2 of 3 criterion in

social communication domain;

Advocated against the use of a severity scale;

Advocated against the new Social Communication Disorder diagnosis OR to connect it to the autism spectrum by relabeling as ASD-NOS or ASD-SC subtype;

Advocated for more language on gender and racial disparities

in diagnosis;

Advocated for more criterion under (B) relating to motor and movement issues, including vestibular and proprioceptive issues;

Advocated for more respectful language (i.e: Autism Spectrum

Disability or Autism Spectrum Condition)

Other areas (list is non-exhaustive)

Future Priorities

DSM-5 may have a DSM-5.1, 5.2, 5.3, etc.

Need for robust professional development & education activities to foster correct interpretation of new ASD criteria;

Must closely watch SCD diagnosis, guard against misuse and potentially revisit its existence in future iterations of DSM

Next iteration of the DSM must include formal mechanisms for self-advocate/consumer input (i.e: representation on Workgroup, etc.);

Questions?

Questions? Ari Ne’eman President Autistic Self Advocacy Network aneeman@autisticadvocacy.org

Ari Ne’eman President Autistic Self Advocacy Network aneeman@autisticadvocacy.org http://www.autisticadvocacy.org

Webinar Materials The PowerPoin t a n d r eco r d in g will

Webinar Materials

The PowerPoint and recording will be provided in a follow-up email. Email Phuong (pnguyen@autismnow.org ) to request additional materials.

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