Rethinking autism spectrum disorders: DSM-5 - AUCD

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AUCD 2013 DSM -5: Continuing the Conversation Brian Reichow, University of Conneticut Laura Carpenter, Medical University of South Carolina Pauline Filipek, University of Texas Shannon Haworth, Virginia Commonwealth University

Rethinking Autism Spectrum Disorders: DSM-5 Laura Carpenter, PhD, BCBA Associate Professor of Pediatrics Division of Developmental and Behavioral Pediatrics Medical University of South Carolina (MUSC)

Background: SUCCESS Screening of all 8 year olds

Diagnostic Assessments of those at risk for ASD

Calculation of prevalence

Comparison to ADDM prevalence

Comparison of DSM-IV and DSM-5 Laura Carpenter, PhD (2013)

ASD Timeline  

1943/1944: Kanner & Asperger 1980: DSM III  

 

1981: Wing’s translation of Asperger’s Work 1987: DSM III-R  



Autistic Disorder Pervasive Developmental Disorder Not Otherwise Specified

1994: DSM-IV Pervasive Developmental Disorders     



Infantile Autism Childhood Onset Pervasive Developmental Disorder

Autistic Disorder Rett's Disorder Childhood Disintegrative Disorder Asperger's Disorder Pervasive Developmental Disorder Not Otherwise Specified

2013: DSM-5 Autism Spectrum Disorder

Why change?

Autism is a syndrome 

A collection of symptoms that tend to occur together, typically without known cause Observations of multiple patients

Statistical analyses of large databases

What do the data tell us?    

Restricted, repetitive behaviors specific to ASD Sensory issues specific to ASD Communication impairment not specific to ASD Problems with subtypes  not

well distinguished in clinical practice  does not predict outcome  does not direct treatment

Autism vs. Asperger’s vs. PDD-NOS Lord et al., 2012 (Archives of General Psychiatry)     

Simons Simplex Collection 2,102 youth, ages 4-18 Evaluated at university-based centers Completed ADOS, ADI-R, Cognitive, Adaptive Diagnosis  Best-Estimate Clinical (BEC) diagnosis according to DSM-IV-TR  Autistic

Disorder  Asperger’s Disorder  PDD-NOS

Autism vs. Asperger’s vs. PDD-NOS across 12 university-based clinics

Other problems with the “old” definition 

Age of onset requirements too limiting  Older

adolescents and adults  More mildly affected patients  Those adopted or in foster care 

Inconsistencies in definition of Asperger’s Disorder made a “real” diagnosis nearly impossible  Requirement

to rule out autism  Requirement of lack of delay in adaptive skills

Autism

PDD-NOS

Childhood Disintegrative Disorder

DSM-5 Autism Spectrum Disorder

Asperger’s Disorder

Communication Deficits

AUTISM

Social Deficits

Asperger’s Disorder

Restricted, Repetitive Behaviors

Social Communication Deficits

Restricted, Repetitive Behaviors

Social Communication Deficits

Autism Spectrum Disorder Restricted, Repetitive Behaviors

DSM-5: Autism Spectrum Disorder A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by 3 of 3 symptoms B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least 2 of 4 symptoms C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) D. Symptoms together limit and impair everyday functioning.

Social Communication (3 required)

1. Social-emotional reciprocity 3. Developing and maintaining relationships

2. Nonverbal communicative behaviors used for social interaction

Restricted Repetitive Behavior (2 of 4 required) 2. Routines, rituals, resistance to change

1. Repetitive speech, motor movements, or use of objects

3. Restricted interests

4. Hyperor hyporeactivity to sensory input

When is a “quirk” a sign of ASD?   

Look at the full constellation of deficits Is the behavior clearly atypical? Is the behavior present across multiple contexts?

Severity Specifiers Severity Level for ASD

Social Communication

Restricted interests & repetitive behaviors

Level 3 ‘Requiring very substantial support’

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.

Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2 ‘Requiring substantial support’

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.

RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1 ‘Requiring support’

Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Questions about severity   

Can it be reliably determined? Is it impacted by intellectual disability? How can we prevent severity from being used to determine access to services?

Will anyone “lose” their diagnosis? Autism? Aspergers?

Social Communication Deficits

Autism Spectrum Disorder

PDD-NOS?

Restricted, Repetitive Behaviors

Aspies: Loss of Identity?

Photo from blog: cutestkidever.org

Changes in Assessment Practice 

Interviews must be reorganized to follow DSM-5 Sensory issues should be emphasized  Play skills may be de-emphasized  Language still important to assess (especially social language) 

  

ADI-R scores clearly based on DSM-IV domains ADOS-2: Autism vs autism spectrum Social (Pragmatic) Communication Disorder (SCD) is a new differential diagnosis 

Differs from other differentials (ID, DD, Selective Mutism) in that it requires ASD to be rule out

Challenges 



Criterion a2 excludes kids with great eye contact, gestures, facial expressions, etc Applying criterion a3 to very young children 

 



“Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people”

2 or more RRBs in very young children Thorough and accurate assessment of sensory differences  Lack of normative information New interview tools needed

Social (Pragmatic) Communication Disorder 

Problems with SOCIAL USE of verbal and nonverbal communication using communication for social purposes  ability to change communication to match context or the needs of the listener  following rules for conversation and storytelling  understanding what is not explicitly stated 

SCD Challenges     

Few assessment tools No clear treatment protocol No information on prognosis Impact of bilingual status?? Unlikely in kids under 4

Laura Carpenter, PhD 2013

How to assess SCD?   



 

Age 4+? Rule out ASD Children’s Communication Checklist- Second Edition (CCC-2; 4-16) Comprehensive Assessment of Spoken Language (CASL; 3-21) Social Language Development Test (6-11; 12-17) Language sample (need to develop norms)

Diagnostic Dilemmas: DSM-IV versus DSM-5 in Toddlers

Pauline A. Filipek MD Professor of Pediatrics Children’s Learning Institute & Division of Child and Adolescent Neurology UT Health Science Center at Houston

Comparisons of DSM-IV versus DSM-5 Citation Mattila ML, Kielinen M, Linna SL, et al. Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: an epidemiological study. JAACAP 2011;50:583-92 e11. Frazier TW, Youngstrom EA, Speer L, et al. Validation of proposed DSM5 criteria for autism spectrum disorder. JAACAP 2012;51:28-40. McPartland JC, Reichow B, Volkmar FR. Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. JAACAP 2012;51:368-83.

N/ Mean Age 5,484 8yo

N / DSM-IV-TR* FSIQ > 50  26 PDD

N / DSM-5 12/26 ASD (46%)

8,911 2-18yo in IAN

8,911 PDD Sensitivity= 0.95 Specificity= 0.86 657 PDD

Se= 0.81 / Sp= 0.97

657 Mean 9.2yo

398/657 ASD (60.6%) IQ > 70 = 50% Asperger/ PDD-NOS = 25% Se= 0.61 / Sp= 0.95 Matson JL, Kozlowski AM, Hattier MA, Horovitz M, Sipes M. DSM-IV vs 2,721 795 PDD/ 1,926 Non415/795 ASD (52%) DSM-5 diagnostic criteria for toddlers with autism. Developmental Mean 26mo (17-36mo) PDD 75% AD Neurorehabilitation 2012;15:185-90. 11% PDD-NOS 111 PDD / 21 Non-PDD 84/111 ASD (64.4%) Gibbs V, Aldridge F, Chandler F, Witzlsperger E, Smith K. Brief report: an 132 exploratory study comparing diagnostic outcomes for autism spectrum Mean 6yo (2-16yo) 59 AD 53/59 AD (89.8%) disorders under DSM-IV-TR with the proposed DSM-5 revision. JADD 18 Asperger 15/18 Asperger (83.4%) 2012;42:1750-6. 34 PDD-NOS 17/34 PDD-NOS (50%) Taheri A, Perry A. Exploring the proposed DSM-5 criteria in a clinical 131 131 PDD 82/131 ASD (63%) sample. JADD 2012;42:1810-7. Mean 6.4yo (2.10-12.7yo) 93 AD / 36 PDD-NOS 75 AD (81%) Mean FSIQ= 46.3 (8-111) 6 PDD-NOS (17%) Huerta M, Bishop SL, Duncan A, Hus V, Lord C. Application of DSM-5 5,143 4,453 PDD / 690 Non- 4,052 ASD (91%) using ADOS criteria for autism spectrum disorder to three samples of children with CPEA Mean 6.4yo PDD Threshold of 1 DSM-IV diagnoses of pervasive developmental disorders. AJP 012;169: UMich Mean 6.6yo 1056-64. Simons Mean 9.4yo Wilson CE, Gillan N, Spain D, et al. Comparison of ICD-10R, DSM-IV-TR 150 150 PDD 117/150 ASD (78%) and DSM-5 in an Adult Autism Spectrum Disorder Diagnostic Clinic. Mean 31yo (18-65yo) JADD 2013;43:2515-25. Jashar D, Brennan L, Robins D, Barton M, Fein D. DSM-5 Criteria 234 PDD / 98 Non-PDD 166 / 234 ASD (71%) 332 Applied to Toddlers Diagnosed with ASD by DSM-IV-TR. Presented at 68% not meeting DSM-5 were Mean age 26.0mo IMFAR 2013. PDD-NOS (16-39mo) Barton ML, Robins DL, Jashar D, Brennan L, Fein D. Sensitivity and 844 568 PDD 219/284 ASD (77%) Specificity of Proposed DSM-5 Criteria for Autism Spectrum Disorder Mean 25.8mo (16.8-39.4) 276 Non-PDD in Toddlers. JADD 2013; 43(5):1184-95. * DSM-IV-TR PDD = Combined AD, Asperger and PDD-NOS

DSM-IV versus DSM-5 in Toddlers Matson JL, Kozlowski AM, Hattier MA, Horovitz M, Sipes M. DSM-IV vs DSM-5 diagnostic criteria for toddlers with autism. Developmental Neurorehabilitation 2012;15:185-90. • N= 2,721 • Mean 26mo (range 17-36mo) • 795 DSM-IV PDD/ 1,926 no PDD • Used BISCUIT- Part 1, BDI-2 and M-CHAT • 415 / 795 met DSM-5 ASD criteria (52%)  75% DSM-IV AD met DSM-5 ASD  only 11% DSM-IV PDD-NOS met DSM-5 ASD

DSM-IV versus DSM-5 in Toddlers Barton ML, Robins DL, Jashar D, Brennan L, Fein D. Sensitivity and Specificity of Proposed DSM-5 Criteria for Autism Spectrum Disorder in Toddlers. JADD 2013; 43:1184-95. • N=422, cohorts in Georgia and Connecticut • Mean age 26mo (range 16.8-39.4mo) • 284 DSM-IV PDD / 138 Non-PDD • Used ADOS threshold of 2 (not 1 per Huerta et al.) to map to DSM-5 • 219 / 284 met DSM-5 ASD criteria (77%)

DSM-IV versus DSM-5 in Toddlers Jashar D, Brennan L, Robins D, Barton M, Fein D. DSM-5 Criteria Applied to Toddlers Diagnosed with ASD by DSM-IV-TR. Presented at IMFAR 2013. • N= 332 from larger cohort • Mean age 25.95mo (range 16-39mo) • 234 DSM-IV PDD / 98 Non-PDD • 166 / 234 met DSM-5 ASD criteria (71%)  46 / 68 (68%) not meeting DSM-5 criteria had DSMIV diagnosis of PDD-NOS  15% of DSM-IV Autistic Disorder  51% of DSM-IV PDD-NOS

DSM-IV versus DSM-5 in Toddlers Jashar D, Brennan L, Robins D, Barton M, Fein D. DSM-5 Criteria Applied to Toddlers Diagnosed with ASD by DSM-IV-TR. Presented at IMFAR 2013 (continued). HOWEVER,  17 / 98 (17%) from DSM-IV Non-PDD group met DSM-5 ASD criteria;  13/17 (76%) had [Global] Developmental Delay  4/17 (24%) had DLD/SLI

Case 1 – 26 months 26mo female • Covered eyes at social encounters much of the time • Did give eye contact / smiles some of the time • Long delay before asking for help • Responds to her name only if mother calls • Only a few words, without babbling or gibberish • Very little communicative intent • No pointing or other gestures • Unable to follow gaze and follows a point rarely • Preferred cause-and-effect toys • Played in isolation unless she needed help • Did not often respond to verbal requests • Does not engage in pretend play • Uninterested in pretend birthday party- Repetitively dropped plates onto the table and threw doll on the floor instead of “putting it to sleep”

Case 1 – 26 months 26mo female • Did imitate some but not flexibly with a variety of objects • Inconsistent use of eye contact and nonverbal behaviors for communication • Did gaze shift several times if a desired object was out of reach • Gave a cookie container to her mother without any eye contact or communication to request • When she did not get what she wanted (e.g., cookie) she simply “moved on” • Did not show anything “to share” although she did give “to fix” • Preoccupied with a knob on the wall and repeatedly went back to it during the evaluation, exploring it visually and tactilely • Showed unusual interest in chair buttons and bumps in rug • Did a lot of aimless wandering around the room • Hit herself in the head when she became frustrated

Case 1 – 26 months Vineland SS / AE

Communication Daily Living Skills Socialization Motor Skills Adaptive Behavior Composite

70 76 81 87 72

1-1 1-5 1-3 1-8

MSEL T-Scores / AE

Visual Reception Fine Motor Receptive Language Expressive Language Early Learning Composite

33 39 20 28

1-7 1-10 0-11 1-3

Reciprocal Social Interaction Communication-Nonverbal Repetitive Behaviors

13 10 0

ADI-R Totals

ADOS Module 1 Totals Communication Reciprocal Social Interactions Communication + Social Interactions

3 5 8

CARS

Total Score

28.5

DIAGNOSIS:

PDD-NOS

SS 63

Case 1: DSM-5 Criteria for ASD A

  

Persistent deficits in social communication and social interaction across contexts, currently or by history: A1 Deficits in social-emotional reciprocity; A2 Deficits in nonverbal communicative behaviors used for social interaction; A3 Deficits in developing, maintaining and understanding relationships.

B

Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history: B1 Stereotyped or repetitive motor movements, use of objects or speech; B2 Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior; B3 Highly restricted, fixated interests that are abnormal in intensity or focus;



B4 Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment.

Case 2 – 27 months 27mo Male • Vocalizations consisted of babbling • ~8 words noted during the evaluation, plus counting 1-4, labeling shapes • Did combine “bye” with waving • Pointed only to close objects but never to share, without coordination of eye gaze or vocalization • Some vocalizations were directed at others but only to obtain help, never to share or direct attention • Vocalizations had peculiar intonation • Some echolalia • Some shared enjoyment • Very active and difficult to engage – fleeting attention • Made eye contact but not to communicate needs and interests • Did not show “to share” – only gave “to fix” • Did not include anyone in his activities

Case 2 – 27 months 27mo Male • Used “hand-over-hand” to get his needs met • Spun most toys, as well as repetitively pushing buttons • Did not understand most of what was asked of him • When given a choice for a snack, he simply reached for what he wanted without eye contact or other communicative intent • Favored toyed included Poppin’ Pals and Jack-in-the-box, which he spun briefly • Gave mother some blocks, smiled at her, then grabbed her hands to make them spin without eye contact • Had no interest in toy miniatures but did prompted ball play • Liked to climb onto furniture, get himself into small spaces, bang his head on a couch

Case 2 – 27 months Vineland SS / AE

MSEL T-Scores / AE

ADI-R Totals ADOS Totals

CARS DIAGNOSIS:

Communication Daily Living Skills Socialization Motor Skills Adaptive Behavior Composite Visual Reception Fine Motor Receptive Language Expressive Language Reciprocal Social Interaction Communication-Nonverbal Repetitive Behaviors Communication Reciprocal Social Interaction Play Stereotyped Behaviors/ Restricted Interests Total Score Autistic Disorder

71 70 72 75 66 20 20 20 32 12 7 1 6 9 5 2 27.5

1-3 1-4 1-1 1-6 1-5 1-8 0-11 1-6

Case 2 – DSM-5 Criteria for ASD A 

Persistent deficits in social communication and social interaction across contexts, currently or by history: A1 Deficits in social-emotional reciprocity;



A2 Deficits in nonverbal communicative behaviors used for social interaction;



A3 Deficits in developing, maintaining and understanding relationships. B



Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history: B1 Stereotyped or repetitive motor movements, use of objects or speech; B2 Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior; B3 Highly restricted, fixated interests that are abnormal in intensity or focus; B4 Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment.

Case 3 – 25 months And because there is an apparent clinical misconception that toddlers not qualifying for DSM-5 ASD miss criteria only in B: Restricted, Repetitive Patterns of Behavior, Interests, or Activities and never in A: Persistent Deficits in Social Communication and Social Interaction Across Contexts…

Case 3 – 25 months 25mo Male • Became distressed when adult tried to engage him • Mostly babbled, with some single words • Directed vocalizations mostly to just to get help with a few occasions of expressing interest in the activity • Limited use of gestures- did clap and once pointed to an object but without eye contact towards an adult “to share” • Made spontaneous eye contact sometimes, although mostly failed to make eye contact when adults tried to engage him • Sustained eye contact only when highly motivated (e.g., bubbles) • Looked to mother several times to “check in” • Spent most of the evaluation following his own interests • Did not respond to his name or to smiles of others • Directed facial expressions only when upset or did not want to continue an activity

Case 3 – 25 months 25mo Male • Particular interest in spinning of wheels on cars • Difficult to redirect his attention from the cars • Particularly liked to hold linear objects, like pretzels or a fork, on a vertical plane while spinning around in a circle • Did not seek any input or respond to adults’ statements or gestures when not in a highly motivating activity • Did not show “to share” • Did not initiate or respond to joint attention prompt • Played appropriately with some cause-and-effect toys • Played more repetitively with cars, spinning the wheels but not pushing them along • No make believe play

Case 3 – 25 months Vineland SS / AE

Communication Daily Living Skills Socialization Motor Skills Adaptive Behavior Composite

77 83 77 75 72

1-4 1-7 1-2 1-4

MSEL T-Scores / AE

Visual Reception Fine Motor Receptive Language Expressive Language Early Learning Composite

20 20 20 28

1-2 1-2 0-10 1-3

ADI-R Totals

Reciprocal Social Interaction Communication-Nonverbal Repetitive Behaviors

ADOS Totals

Communication 3 Reciprocal Social Interactions 10 Play 4 Stereotyped Behaviors/ Restricted Interests 4

CARS

Total Score

DSM-IV DIAGNOSIS:

Autistic Disorder

10 7 3

31

Case 3 - DSM-5 Criteria for ASD A 

Persistent deficits in social communication and social interaction across contexts, currently or by history: A1 Deficits in social-emotional reciprocity;



A2 Deficits in nonverbal communicative behaviors used for social interaction; A3 Deficits in developing, maintaining and understanding relationships. B



Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history: B1 Stereotyped or repetitive motor movements, use of objects or speech; B2 Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior; B3 Highly restricted, fixated interests that are abnormal in intensity or focus;



B4 Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment.

So – What’s a Diagnostician To Do? •

As an “alternative” diagnosis, Social Communication Disorder cannot be diagnosed until age 4 years or older



Social Communication Disorder probably will not be eligible to receive any benefits through the schools or insurance in many states (including mine)

So what happens to these toddlers in particular, who will be unable to obtain services without an appropriate diagnosis ???

• Remember: Barton et al determined its DSM-IV/DSM-5 accordance rates by mapping ADOS items onto DSM-5 and by only using ADOS items with a score = 2 (and not 1) • May be more foreboding for research studies than for clinical diagnosis (although the jury is still very far out on this concept) • An experienced clinician who clearly recognizes a clinical diagnosis of ASD should theoretically should be able to make a clinical diagnosis • Less experienced clinicians, well….. • ICD-11 will go into effect in 2014-5, reportedly maps better onto DSM-IV than onto DSM-5 for autism



With the recent focus on identifying the earliest signs and symptoms of ASD is even the very youngest infants…



With the recent empiric documentation that the earliest initiation of intensive intervention produces definite benefits…



We must continue to advocate for our patients to insure that they receive the best possible services…

DSM-5 Family Perspectives

Shannon M. Haworth, MA, QMHP

Background • • • •

• •



Mother of a child with an Autism Spectrum Disorder (high functioning). Former Va-LEND Trainee, in the Family Discipline. Worked with families and treated children across the Autism spectrum, as a behavior analyst. Project manager for the ASD Early STEP project, for the Partnership for People with Disabilities (VCU), & Va-LEND Clinic Coordinator. Very hard to get a diagnosis for my child. Finally at 4 – diagnosed with PDD-NOS (not Asperger's - speech delay) by a developmental pediatrician. At 6 it changed to Autistic Disorder (ADOS testing).







• •





Background

He is very high functioning, at 7, Psychiatrist changed his label to mild-moderate Autism. She did this to line up with the DSM-5. I was told by professionals that as my son gets older functions as a child with Asperger's. This has now become the case. He has specifically benefitted from insurance sanctioned therapies, school services, and accommodations. He is on grade level (2nd grade), ahead in math, science and technology. Behaviors that kept him in a more restrictive environment have been significantly reduced (near zero levels). He is in general education almost all day with a 1:1 aide, and in the Autism Classroom 45 minutes per day , or when he gets overwhelmed and needs a break. What if he did not have all these supports due to a change in his diagnosis?

Change of Diagnosis? •

• •

• • • •



Now that the Autism is classified differently, families like mine wonder how services for their children with HFA/Asperger’s will be affected. It has been a struggle to receive a diagnosis and services for my child. School services and accommodations have been a constant battle. He tests very well, so some of his services have already been reduced (speech, OT). Fought to keep him in LRE, with an aide. Had a lawyer from the VOPA because his rights were being trampled on. He does not fit into many peoples idea of Autism, which makes things harder. We don’t qualify for Medicaid/SSI, but we did qualified for a waiver for my child (EDCD), on the wait list for the DD waiver. The concern is this: Will families who have children with High functioning Autism or Asperger's be denied services because of the new classifications?

Highlights of Changes from DSM-IV-TR to DSM-5: : “Autism spectrum disorder is a new DSM-5 name that reflects a scientific consensus that four previously separate disorders are actually a single condition with different levels of symptom severity in two core domains. ASD now encompasses the previous DSM-IV autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. ASD is characterized by 1) deficits in social communication and social interaction and 2) restricted repetitive behaviors, interests, and activities (RRBs).”

http://www.dsm5.org/

PANIC! Questions I heard the most from families: •Will my child with high functioning autism or Asperger's lose there diagnosis (label)? •Will my change receive a different diagnosis? •Will my child’s eligibility for services and supports change at school because of the changes? •Will my child still qualify for an IEP? •Will my child lose their Medicaid Waiver because of a label change? •Will it be harder to justify services for my child with insurance companies if he is no longer on the spectrum? Will I have to pay for therapies? Parents who already had to fight for services for their children were in a panic when the changes took place.

What May Happen • •

• •

How the DSM-5 classifies autism may affect some families. Children like mine who are high functioning, or previously diagnosed with Asperger's may no longer be classified as having Autism. They may have a different diagnosis instead of none at all. In addition to speaking with families, I also researched the topic, and spoke with schools and Providers (Psychologists, Psychiatrists, Pediatricians, etc.) for more information.

School Systems I cannot say this applies to all school but for Virginia, the VDOE provided a document to explain how the changes will/or should affect children diagnosed with Autism. VDOE Response to DSM-5 •Question: Will the changes in the DSM-5 affect my child’s special education and related services? •Answer: No. While autism spectrum disorders (ASD) and related disorders have changed from the DSM-IV diagnostic criteria to the DSM-5 diagnostic criteria, it is Virginia’s special education regulations and laws that regulate the delivery of special education and related services in the commonwealth. Virginia’s regulations and laws have not changed; therefore, there should be no changes to your child’s Individualized Education Program (IEP) supports and services as a result of the changes in the DSM. •May be similar for other school districts.

School Systems VDOE Response to DSM-5 •Question: Will changes in the DSM-5 effect evaluation and eligibility decision making processes in the area of ASD in schools? •Answer: No. There should be no changes in evaluation and eligibility decision making as a result of changes in the DSM-5. The Virginia Regulations Governing Special Education Programs for Children with Disabilities contain specific eligibility criteria for each disability category and are not impacted by the release of the DSM5. Schools should continue to follow the Virginia regulations and laws, rather than the DSM.

School Systems VDOE Response to DSM-5 • Question: If my doctor notifies me of changes, how will this impact my child’s education? •Answer: While the changes in the DSM-5 may result in changes to clinical or medical practice in Virginia, educational identification practices have not changed. Medical diagnosis or DSM criteria is not required by state regulation as part of an eligibility determination as a student with autism. Virginia provides specific eligibility criteria that local school divisions may follow. VDOE Guidance on Evaluation and Eligibility for the Special Education Process (2009) highlights the distinction between educational identification and medical diagnosis. http://www.doe.virginia.gov/

Providers View I asked professionals who diagnose developmental

disabilities in children if the DSM-5 definition of Autism will negatively impact families and children like mine. Responses: •Short answer is "no" (at least theoretically). •The DSM-5 definition of ASD includes the statement: "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.” •Unusual “ include that statement in a diagnostic manual,” but helpful from an “ advocacy perspective” • Some systems “ through ignorance or perversity,” may try to exclude some children because of the revised definition.

The Reality

• The DSM-5 definition of ASD includes the statement: "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.” - Children previously diagnosed with Asperger's or HFA should continue to have a diagnosis of Autism Spectrum Disorder (mild-moderate-severe). • I have not specifically been told by families that their child's eligibility for services in school has been affected, or that they have lost a Medicaid waiver, or it has been harder to qualify for one. • School systems, and providers state that these changes will not affect most children who already receive services. • As for insurance companies, I can only hope they don’t deny more claims for treatments. • In reality no one knows at this time how the changes will affect families in the long run. • Parents need to continue to be advocates for their children. • The specific “label” does not matter, as long as they receive adequate services for their children, because research shows that with the correct supports, children with ASD can be successful, and improve.

Contact Information Shannon M. Haworth, MA, QMHP Partnership for People with Disabilities Virginia Commonwealth University [email protected] 804-827-8770

Thank you

Questions?

AUCD 2013

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AUCD 2013

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Rethinking autism spectrum disorders: DSM-5 - AUCD

AUCD 2013 DSM -5: Continuing the Conversation Brian Reichow, University of Conneticut Laura Carpenter, Medical University of South Carolina Pauline Fi...

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5.1 Comparison between the ASD group and the control group. 5.2 Results of the ..... c. stereotyped and repetitive use o