. UAE NEWSPAPERS LIFE & STYLE | HEALTH The rise of autism in the UAE With more and more children being diagnosed as autistic in the UAE, parents have to deal with the financial burden of treatment and therapy, as well as the emotional fall-out, discovers Suchitra Bajpai Chaudhary By Suchitra Bajpai Chaudhary, Friday magazine Published: 00:00 May 11, 2012 Credit: Dennis B. Mallari/GNMMany UAE residents are still ‘clueless’ aboutautismThis comes in face of the recent statistic that indicates a childis diagnosed with autism every 20 minutes in the UAEBy Bindu Suresh RaiPublished Sunday, April 08, 2012 The blank stares that reflected in the eyes of many UAE residents when quizzed over their knowledge of autism backed the claim that more needs to be done in raising awareness for this medical condition in the country. The recently concluded World Autism Day on April 2, which was also marked in Dubai, saw awareness for this developmental condition still at its grassroots level with several members of the public; this was supported further via the results of a spot poll conducted by Emirates 24|7 that indicated only six per cent of the 123 people questioned were aware of autism. A child undergoes therapy at the Dubai Autism Centre. According to local experts, a child is diagnosed with autism every 20 minutes in the UAE and one out of every 110 children is autistic.
History of Autismo Term autism originally used by Bleuler (1911) o To describe withdrawal from social relations into a rich fantasy life seen in individuals with schizophrenia o Derived from the Greek autos (self) and ismos (condition)o Leo Kanner – 1943 o Observed 11 children o Inattention to outside world: “extreme autistic aloneness” o Similar patterns of behavior in 3 main areas: 1. Abnormal language development and use 2. Social skills deficits and excesses 3. Insistence on sameness
History of Autismo Psychiatrist Hans Asperger (1944) - describes “little professor” syndromeo Eisenberg and Kanner (1956) o Added autism onset prior to age 2 o Further refined definition of autismo Creak (1961) o Developed 9 main characteristics o Believed they described childhood schizophrenia o Incorporated into many descriptions of autism and commonly used autism assessment instruments today
History of Autismo Rutter (1968) o Said the term autism led to confusion! o Argued autism was different than schizophrenia o Higher M:F ratio o Absence of delusions & hallucinations o Stable course (not relapse/marked improvement) o Further defined characteristics (for science, research)o National Society for Autistic Children o One of the 1st & most influential parent groups for children with autism in U.S. o Wrote separate criteria (for public awareness, funding) o Added disturbances in response to sensory stimuli & atypical development o Did not include insistence on sameness
Diagnostic and StatisticalManual of Mental Disorders o Published by the American Psychiatric Association oClassification of mental disorders used in the US oInfantile autism included for first time in DSM-III oChanged to autism in DSM-III-R oDSM – IV published in 1994 o Text Revision in 2000
Pervasive Developmental Disorderso Come under section in DSM-IV-TR entitled… o Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence o Includes o Mental retardation o Learning disorders o Motor skills disorders o Communication disorders o Pervasive developmental disorders o Attention-deficit and disruptive behavior disorders o Feeding and eating disorders of infancy or early childhood o Tic disorders o Elimination disorders o Others: separation anxiety disorder, selective mutism, reactive attachment disorder of infancy or early childhood, stereotypic movement disorder, disorder of infancy, childhood, or adolescence - NOS
DSM Category: PDDs Pervasive Developmental Disorders Childhood Autistic Rett’s Disintegrative Disorder Disorder Disorder PDD- Asperger’s Not Otherwise Disorder Specified• PDDs are characterized by severe and pervasive impairment in 3 main areas • Social interaction • Communication • Repetitive and restricted behaviors
Autistic Disorder. Impairment in social interaction .Impairment in verbal and non Restricted, repetitive andverbal communication. stereotyped patterns of behaviour.Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities inchildren: epidemiology and classification. Journal of Autism and Developmental Disorders, 9, 11-29.
Autism Sensory Sensory sensitivity sensitivity Seizures Communication Repetitive & language & Self-injurious deficit stereotyped behavior behaviors Mentalretardation Social Sleep interaction disturbance deficits GI problems Immune Immune problems problems
Planned changes in autism diagnostic criteria• Revisions to the current DSM-IV are being finalized in 2012, with DSM-V due for publication in May, 2013.• Reason for proposed changes: attempt to establish more reproducibility and homogeneity in diagnosis
Planned changes in autism diagnostic criteriaProposed changes: – Eliminate subcategories including Asperger’s syndrome, PDD- NOS, Rett syndrome, and childhood disintegrative disorder. All of these would be subsumed under the umbrella term, autism spectrum disorder (ASD). – Instead of 3 domains of autism symptoms (repetitive behaviors and deficits in social interaction and language), 2 categories would be used: impairment in social communication and interaction, and restricted interests/repetitive behaviors. No mention of verbal language – it will be considered a co-morbidity. – A new symptom would be included in the second category: hyper- or hypo-reactivity to sensory input, or unusual interest in sensory aspects of the environment. – Each person will also be evaluated in terms of known genetic causes, level of language and IQ, and presence of seizures and/or GI problems. – A new category of Social Communication Disorder will be added to the DSM (people without repetitive behaviors).
Planned changes in autism diagnostic criteria• Positives: The subtypes that will be eliminated cannot be reliably distinguished by expert clinicians; more information will be required in the diagnosis (genetics, IQ, GI issues, seizures, regression history, nature of language impairment), so subtyping will be more straightforward.• Negatives: There is some concern that the criteria will exclude some people who currently have the diagnosis, particularly the higher functioning, milder cases, that do not display repetitive behaviors, for instance. This may result in denying medical treatment and social services to some people on the autism spectrum.
Planned changes in autism diagnostic criteria• Three published studies suggest that 25-78% of Aspergers or high functioning autism will be excluded from the autism diagnosis in DSM-V. Two other, small studies did not support these conclusions, however.• The Autism Speaks foundation is currently funding studies to determine how many people might be excluded and what the healthcare consequences might be.• A significant change in diagnostic criteria in 2013 would complicate future longitudinal studies of prevalence.
Prevalence Of Autism• Went from 1 in 2500, to 1 in 1000, to 1 in 166 over the past decade. Some recent studies 1:88.• Autism is now more common than childhood cancer, down’s syndrome, spina bifida or cystic fibrosis.• Boys are affected 4 times as often as girls but unknown as to why.• 1 out of 68 families will have a child with autism.• Growing at a rate of 10-17 percent per year (it is thought).
Prevalence Of Autism. Prevalence of Autism 80 p. l oNumber of cases per 10,000 60 n j m 40 i k h 20 a c d g e f 0 b 1965 1970 1975 1980 1985 1990 1995 2000 2005
What we know… • ASD Prevalence is increasing (1992: 1 in 1500)CDC - ASD in 8 year olds: California DDS on Autism:2002: 1 in 150 12 fold inc from 1987 – 20072006: 1 in 110 13% annual growth
California DDS Increase in Autism Appears Specific California DDS, 2009
% Visits to Child Psychiatry Clinic, BSP March, 2012
Assessment & Diagnosis• Assessed on a behavioural basis.• ICD-10 and DSM-IV; tick-list medical approach.• Missed diagnosis and misdiagnosis. – Multiple referral routes. – Pressures on resources. – Multiple assessment protocols.• There’s also pressure NOT to diagnose (limited support resources ).
Assessment & DiagnosisThe NICHD lists these five behaviours that signal further evaluation is warranted: – Does not babble or coo by 12 months. – Does not gesture (point, wave, grasp) by 12 months. – Does not say single words by 16 months. – Does not say two-word phrases on his or her own by 24 months. – Has any loss of any language or social skill at any age.
Assessment & Diagnosis• It’s easier to ‘spot’ autism at the low functioning end of the spectrum.• High functioning children do adapt .• Early intervention is critical. – Younger children have a greater degree of brain plasticity (Edelman, 1992).• Late screening: – Very few tools sensitive to adolescent/adult diagnosis. – Self-diagnosis common (AQ published on web).
Etiology: Psychodynamic Theory• Eveloff (1960) – parents are cold, detached, ritualistic• Bruno Bettelheim (1967) – Coined term “refrigerator mothers”• No empirical support
Etiology: Genetic Evidence• Strong evidence for genetic component, but nature of the component is unknown• Doesn’t look like a single gene• Monozygotic twin concordance high, but less than 100%
Aetiology And Theories Of Autism.• Genetic/biological factors. – 2-4% rates for siblings. – MZ twins up to 96% concordance. – DZ twins up to 27% concordance. – More common after chromosomal, infections, traumatic insults to CNS.• One of the hallmarks of Autism is that the characteristics vary significantly among different children with autism. No two children with Autism are the same.
Etiology: Neurotransmitters• Serotonin – Some studies have found higher levels in children with ASD• Opioids – Display properties similar to morphine – Administration can result in stereotypy, insensitivity to pain, reduced socialization – Some studies have found higher levels in children with ASD
Etiology: Vaccines• Vaccines – Thimerosal - Preservative used in MMR vaccine used to contain mercury – Wakefield et al. (1998) • 12 children with PDD and gastrointestinal disease • Purpose was to look at relationship b/w these • Participants were selected b/c they had been referred to a pediatric gastroenterology dept for tx of intestinal problems (e.g., diarrhea, pain, bloating) • Onset appeared to be near time of MMR vaccination • Theory…MMR led to impaired intestinal functioning – Permeability of the intestines increased – Resulted in excess absorption of peptides from food – The peptides have opioid effects – Opioid excess led to brain dysfunction, and… – Concluded that ASD was caused by MMR vaccine
Etiology: Vaccines• Wakefield Study• Methodological Issues – Didn’t discuss specific diagnoses of participants (or how obtained) – The exact onset of intestinal problems wasn’t known – Evidence for link b/w behavior changes and MMR was based on report – Correlational study only• Ethical Problems• Financial and scientific conflicts that Dr. Wakefield did not reveal in his paper.• For instance, part of the costs of Dr. Wakefield’s research were paid by lawyers for parents seeking to sue vaccine makers for damages.• Dr. Wakefield was also found to have patented in 1997 a measles vaccine that would succeed if the combined vaccine were withdrawn or discredited.
Etiology: Vaccines• In 2004, 10 of the 13 authors on the Wakefield et al. study published an article in the same journal (The Lancet) retracting the conclusions made in the original article• In 2010, the Lancet retracted the study altogether• In May, 2010, Wakefield was banned from practicing medicine in Great Britain due to unprofessional conduct
Explanations for the rise in autism• Increase in diagnosis, not actual incidence: better ascertainment; financial and scholastic support is linked to this diagnosis; changing or broadening of criteria of diagnosis• Increase in maternal auto-immune disease (diabetes) and obesity: These disorders are increasing and are associated with increased risk for ASD in the offspring• Hygiene hypothesis: cleaner environment leads to deficiency in educating the immune system as well as increased asthma, allergies and autoimmune disorders; over-use of antibiotics and anti-fever medications may also contribute• Environmental toxins: – Lead – PCBs (polychlorinated bi-phenyls) – Organophosphate pesticides – Endocrine disruptors – Automotive exhaust – Polycyclic aromatic hydrocarbons – Brominated flame retardants – Perfluorinated compounds
Time window of vulnerabilityin fetal brain development – thalidomide example First trimester is also the vulnerable time for the maternal viral infection risk factor Rodier, 2000
Immune involvement in autism• The rate of autoimmune disease or allergies is higher in families with autism, particularly in the mother• Auto-antibodies directed against CNS antigens have been detected in sera of autistic subjects, as well as in the sera of mothers of autistic children• Immune-related genes are dysregulated in autism brains; microglia and astrocytes are activated; cytokines are elevated in brain and cerebral spinal fluid
Cytokines are elevated in autistic brains Vargas et al., 2005
Is There A Cure For Autism?• No – a lifelong disorder.• But people with Autism often make good progress and develop coping strategies.• Range of therapies and treatments but no real consensus on what is most effective.• Because there is a wide variability in people with Autism there is a need to develop an individual treatment and management plan.
Approach to treatment of Autism Spectrum Disorders Medical Neurological Treatment Speech and Social Skills Occupational Therapy Therapy Improved Function Vocational Psychopharm. Treatment Skills Training Behavior Education Therapy
Behaviour Modification Treatment.Many different types of behavioural based interventions for ASD. but general agreement that:• Usually beneficial, sometimes very beneficial.• Most beneficial with young children, but older children can benefit.• Despite the fact that Autism apparently is caused by neurological abnormalities, the most effective treatment for the disorder is highly structured and intensive ‘Applied Behavioural Analysis’ (ABA). (See: Lovaas, 1987; McEachin et al., 1993; Smith et al., 2000.). 41
Collaborative Integrated Care Mental/ Behavioral Medical Care Health Care Education