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The changing face of autism spectrum disorders: prevalence, DSM-5 diagnosis, co-morbidity, development through the life-span, aetiology, effective interventions'. Digby Tantam, Septimus Ltd., Universities of Sheffield, and Cambridge 19 03 15

Bilgi university

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Page 1: Bilgi university

The changing face of autism spectrum disorders: prevalence, DSM-5 diagnosis, co-morbidity,

development through the life-span, aetiology, effective interventions'.

Digby Tantam,

Septimus Ltd.,

Universities of Sheffield, and Cambridge

19 03 15

Page 2: Bilgi university

Autism Spectrum Disorder 299.00 (F84.0)

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history

Specify current severity

C. Symptoms must be present in the early developmental period

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 for general developmental level.

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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

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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)

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

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

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

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• Specify if:

• With or without accompanying intellectual impairment

• With or without accompanying language impairment

• Associated with a known medical or genetic condition or environmental factor

• (Coding note: Use additional code to identify the associated medical or genetic condition.)

• Associated with another neurodevelopmental, mental, or behavioral disorder

• (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)

• With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

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Severity levels

• Level 3 "Requiring very substantial support”

• Level 2 "Requiring substantial support”

• Level 1 "Requiring support” (Asperger syndrome)

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Severity levels of social communication and of rituals and repetitive behaviours (RRBs)

• 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. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches

• Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

• 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 responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.

• Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

• Level 1 "Requiring support” Asperger syndrome

• Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

• Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

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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 or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat 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 interest).

4. Hyper- or hyporeactivity to sensory input or unusual interests 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).

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A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by all 3 of 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 and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, 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.

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Nomenclature

• Bleuler briefly thought autism (autoeroticism) was a fundamental symptom of schizophrenia. He replaced the term with ‘schizoid’

• Autism, since Kanner = autistic disorder

• Autism spectrum = pervasive developmental disorder = autism spectrum disorder ASD)

• Autism spectrum condition = ASD – desire to carry the weight of a medical diagnosis

• Asperger’s syndrome =Asperger syndrome = Asperger’s disorder = high functioning autism = one, as yet undefined, cluster within ASD

• Social communication disorder = semantic pragmatic syndrome ?= AS

• Demand avoidance syndrome, and noverbal learning disability may be synonyms of one part of ASD

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Relation of AS to ASD

• Asperger syndrome (AS) implies normal intelligence, typical language but not typical speech

– Is this true through the life-span

– What about VIQ > PIQ?

• AS is less severe?

– What about mental health problems?

• People with AS are more self-aware

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Fundamental symptoms?

• Genetic?

– Almost certainly not

– Emphasis switching from genome to proteome

– Multiple causes

• Brain structure or function?

– Almost certainly not

– Sketchy evidence in favour wide area networks

– Frontotemporal

• How the brain is used (‘cognition’)

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Ciccarelli, O., Catani, M., Johansen-Berg, H., Clark, C., & Thompson, A. (2008). Diffusion-based tractography in neurological disorders: concepts, applications, and

future developments. [doi: DOI: 10.1016/S1474-4422(08)70163-7]. The Lancet Neurology, 7(8), 715-727.

Sahyoun, C. P., Belliveau, J. W., & Mody, M. (2010). White matter integrity and pictorial reasoning in high-functioning children with autism. Brain And Cognition, 73(3), 180-188.

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Alter Ego

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Social cognitive theories of autism

• Uta Frith and Simon Baron-Cohen’s theory of mind theory

– Systematizers (poor theory of mind, good spatial theorizing) vs. empathizers

– Men versus women

– Testosterone exposure in utero

• Uta Frith’s central coherence theory

• Impaired development of nonverbal communication

– Meltzoff: impaired imitation

– Sigman and Mundy: impaired joint attention

– My own reduced interbrain bandwidth

• Psychoanalytic theories

– Impaired intersubjectivity

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Further information

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Autism spectrum disorder, DSM5 criteria

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotypies

2. Routines and rituals

3. Special interests

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

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity

2. Deficits in nonverbal communicative behaviors used for social interaction

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers)

Autistic syndrome– ‘social communication disorder’

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Language impairment

Autistic syndrome

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Epidemiology of ASD:

data from Centers for Disease Control and Prevention Autism and Developmental Disabilities

Monitoring (ADDM) Network

http://www.cdc.gov/ncbddd/autism/data.html

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Epidemiology of ASD:

data from Centers for Disease Control and Prevention Autism and Developmental Disabilities

Monitoring (ADDM) Network

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Figure 1. Prevalence per 1000 of ASD by three SES indicators based on census block group of residence.

Durkin MS, Maenner MJ, Meaney FJ, Levy SE, DiGuiseppi C, et al. (2010) Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study. PLoS ONE 5(7): e11551. doi:10.1371/journal.pone.0011551http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.0011551

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• Intellectual ability of children with ASD varies greatly. About half of the children have average or above-average intellectual ability (i.e., IQ above 85) compared to only one-third 10 years ago.

• Boys remain more likely to be identified with ASD with one in 42 diagnosed compared with one in 189 girls.

• Prevalence also varied by racial/ethnic group, with non-Hispanic white children 30% more likely to be identified than non-Hispanic black children and 50% more likely than Hispanic children.

• A greater number of black children (48%) were classified within the range of intellectual disability vs. 38% of Hispanic and 25% of non-Hispanic white children.

• Median age at diagnosis remains 4 years of age, although resources enable diagnosis for some patients as young as 2 years old.

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RSM

Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Associated conditions

Tourette, dyspraxia, agnosias

22 May 2012

Speech and narrativeToMEmpathy disorder

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

Anxiety-related disorder

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Forensic aspects

• ‘Lack of empathy’ probably of little forensic significance

• Crimes when they occur may seem inexplicable and have stranger victims

• Some crimes may have a particular relationship to ASD e.g stalking

• Risk of false confession (esp. in those with ADHD)

• Risk of being victimized by CPJ processes

• Issues about fitness to plead

• Diminished responsibility

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www.existentialacademy.com

28

St. Andrew’s healthcare forum: Do people with AS always tell the truth? 2nd. July 2010

Does lacking a narrative truth make people with AS vulnerable witnesses?

• If diagnosed, should be considered ‘vulnerable adults’ under1984 Police and Criminal Evidence Act code C criteria

• Children and vulnerable adults should only be interviewed in the presence of an appropriate adult, wherever possible this being a person with knowledge of the particular condition of the interviewee.

• As defendants, do not currently receive support

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www.existentialacademy.com

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St. Andrew’s healthcare forum: Do people with AS always tell the truth? 2nd. July 2010

understanding

• Gudjonsson, G. H., G. H. Murphy, et al. (2000). "Assessing the capacity of people with intellectual disabilities to be witnesses in court." Psychol Med 30(2): 307-314

• 1/3rd with IQs between 50 and 59 did not understand difference between truth and lie

• None with IQs less than 50 did

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www.existentialacademy.com

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St. Andrew’s healthcare forum: Do people with AS always tell the truth? 2nd. July 2010

Unreliable evidence, false confessions

• Compliance, or coercion

• People with AS and ADHD are vulnerable to this Psychological Medicine

• One study shows a link with negative life events Drake, K. E. (2010). "Interrogative suggestibility: Life adversity, neuroticism, and compliance." Personality and Individual Differences 48(4): 493-498.

• So bullying may be a factor

• But lack of conflict resolution, and use of easy compliance may be another

• Easy because a lack of forethought

• Suggestibility

• Probably no greater in people with AS

Bruck, M., K. London, et al. (2007). "Autobiographical memory and suggestibility in children with autism spectrum disorder." Dev.Psychopathol. 19(1): 73-95; AS McCrory, E., L. A. Henry, et al. (2007). "Eye-witness memory and suggestibility in children with Asperger syndrome. [Article]." Journal of Child Psychology & Psychiatry 48(5): 482-489..

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Type of intervention

Ratio of improved to no

effect or worse

Number of children trying this

treatment (% of sample)

Applied behavior analysis (ABA) 3.76 225 (47.0%)

Social skills training 3.05 244 (50.9%)

Picture exchange system (PECS) 2.88 231 (48.2%)

TEACCH 2.86 88 (18.4%)

Positive behavioral support 2.82 233 (48.6%)

Sensory Integration 2.79 255 (53.2%)

Occupational therapy 2.77 361 (75.4%)

Physical therapy 2.68 146 (30.5%)

Speech therapy 2.53 403 (84.1%)

Early intervention services 2.39 331 (69.1%)

Social stories 2.33 197 (41.1%)

Floor time 2.10 129 (26.9%)

Options program 2.00 21 (4.4%)

Music therapy 1.72 129 (26.9%)

Auditory integration therapy 1.52 88 (18.4%)

Neurofeedback 0.67 16 (3.3%)

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General principles of psychotherapeutic work in ASD

• Do not expect narrative awareness or autobiographical memory

• Do not rely on signs of attention

• Simplify language but not ideas

• Look for other communication media

• May be easier to translate and then respond in action e.g. change carer behaviour than to communicate

• Role blurring

– Advocate

– Advisor

– Carer19 03 15

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Language impairment

Autistic syndrome

Enter the other’s world, butdo not expect intersubjectivity

Be aware of the importance of the past and look for commemorative activities

Provide predictability (may achieve this through behavioural means e.g. ABC approach)

Be aware that anxiety—and frustration– may not be expressed

Do not assume that a lack of social interaction is a lack of interest

Value peer support19 03 15

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Language impairment

Autistic syndrome

Consider sameness to be a means of achieving comfort through predictabilityAn increase in repetition may indicate anxietyAn appropriate balance must be struck about how much comfort is appropriateRituals may be commemorative and acts of iImaginative reconstruction that are open to involvement and modification by kindly othersSpecial interests provide quality of lifeOCD and hoarding involve an additional element of folie de doute, or warding offRituals may come to be weapons

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Language impairment

Autistic syndrome

Language, verbal IQ, and intellectual disability are correlatedAlternative means of communication may be usefulPeople with ID may develop simplifying concepts that can be effective tools e.g. the open and closed faceWritten language may sometimes be more comprehensibleProcessing may take longer, but get there in the endApparent verbal fluency may be deceptive: it’s understanding not language that mattersPsychotherapy may be a matter of connecting the dots…

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Associated conditions

Tourette, dyspraxia, agnosias

Learning from the EE literature

Understanding impersistence

Cueing attention

Dysexecutive Autistic syndrome

How does Dad handle it?

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Anxiety-related disorder

Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

Meltdowns are catastrophic reactions.

They can only be prevented when tension Is at an early stage but may then be unrecognizable unless individual prodrome is known

A sensory assessment may be helpful, but should Include information demands

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

The risk of a person with an ASD being bullied is7 times greater relative to the risk of a neurotypicalchild of the same age

Anxiety-related disorder

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Consequences of bullying

• Passive failure to be included

– Reduced use of community resources (social exclusion)

– Experience of being unwanted/marginalized

• Active rejection , blaming, scapegoating

– Stigma as a means of keeping threatening Other at a distance

– Bullying

Painted Bird by Edward Gafford, inspired by the novel ‘Painted Bird’ by Jerzy Kosiński, itself based on what has been claimed is a fictive war-time experience of the author in Poland

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

Making an impact:uproar, aggression, weaponizing

Containing the risk so that non-reinforcement is possible

Anxiety-related disorder

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

Identity borrowings

Providing a healthy identityAnxiety-related disorder

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Coping with a lack of identity• Fads

• ‘Obsessive’ relationships

• Lack of identity in many people with ASD

– Adopting identity wholesale

– Joining charismatic groups

– Moving places and work

• Searching for identity

– ‘Transexualism’

– ‘Aspie’

• Identities off the peg

– Gangster

– Professor

– Teddy bear19 03 15

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

Anxiety-related disorder

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Impaired social communication and social interaction(DSM-5)

Restricted repetitiveness(DSM-5)

Intellectual disability

Language impairment

Epilepsy

ADHD

Consequential conditions

Victimization

Marginalization

Tourette, dyspraxia, agnosias

Sensory issues,Information overload,melt downs

The search for the self

As adults: Making demands for closure, precision, procedure that cannot be met:PARTICULARLY AN ISSUE FOR DOCTORSAnxiety-related disorder

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Reported prevalence

of psychiatric disorder in

older adolescents and adults

Disorder Hutton et al

N=135

My clinic

sample

N=490

Balfe

et al

N=78

Hofvander

et al N=122

Weighted

mean %

ADHD       43 43.0

Anxiety 16 42 47 50 39.4

Panic disorder     30   38.5

Depression   25 30  65 32.6

Obsessive-compulsive disorder 4 14     9.0

Substance misuse   4   16 4.7

Somatoform disorder     41 5 4.6

Bipolar disorder 1 3.2   8 3.3

Brief psychosis   3.4   2 2.3

Schizophrenia   3   3 2.2

Eating disorder       5 0.7

Catatonia   1     0.6

Delusional disorder       1 0.2

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Medical management

• Diagnosis—DEFINITE OR REASSESSMENT

• Physical assessment

– Skin for tuberous sclerosis

– Neurodermatosis

• Dysmorphia

– Karyotyping

– Fragile X, XXY

• Epilepsy or other neurological signs

– Full neurological assessment, possible MRI

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Type of medication

Ratio of improved to

no effect or worse

Number of children trying

this treatment (% of sample)

Miscellaneous GI medication 4.00 10 (2%)

Miscellaneous herbal medication 3.33 13 (2.7%)

Atypical antipsychotics 2.08 80 (16.7%)

Anxiolytics 2.00 12 (2.5%)

Stimulants 1.80 172 (35.9%)

Mood stabilizers 1.80 70 (14.6%)

Chelation 1.60 32 (6.7%)

GF and/or CF dietb 1.52 155 (32.4%)

Antidepressants 1.31 136 (28.4%)

Other dietc 1.19 54 (11.3%)

Miscellaneous other medication 1.17 13 (2.7%)

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What are the real drug effects?• Reducing severe depression: Antidepressants

• Reducing positive symptoms:

– Antipsychotics

• Reducing anxiety

– ?SSRIs

• Reducing over-activity and increasing response control:

– Stimulants

• Reducing mood fluctuations

• Lithium and anticonvulsants

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‘Proper’ psychotherapy

• No particular modality is better than another, although person-centered is good

• Limited value for CBT (assumes ‘lexithymia’)

• Do not expect working through

• Social predicaments are relatively less common than in general psychotherapy

• Ruminations may be an issue

– E.g. issues of injustice

• Misunderstandings may be an issue

– E.g ‘You’ll be the death of her”

• May require the reconstruction of another person’s perspective

• Practical advice may also be required 19 03 15

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The end.Thanks for listening.Slides at http://www.slideshare.net/md1dt/psychotherapeutic-approaches-to-helping-adults-with-intellectual-disability-and-autism-spectrum-conditions

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