SUPPORTING AUTISTIC CHILDREN AND THEIR FAMILIES IN PALESTINE

1. SUPPORTING AUTISTIC CHILDREN AND THEIR FAMILIES IN PALESTINE Dr Souha SHEHADEH Child Psychiatrist Bethlehem Arab Society for Rehabilitation

2. Introduction • Autismis currently at the heart of many debates in the sector of childhood services. • Autism Spectrum Disorders are defined by the early onset of a constellation of difficulties in reciprocal social interaction and communication and restricted, repetitive behaviors or interests. • The term “Pervasive Developmental Disorders" came to be adopted in both ICD 10 and DSM IV as an umbrella term used to cover a broader range of autistic like disorders.

3. Epidemiology • In international literature, the epidemiology of autistic spectrum disorders has recently become quite controversial because of disputed claims that a rise in incidence was caused by use of mumps-measles-rubella triple vaccine • Large systematic epidemiological studies have shown increases in prevalence from the estimated rate of autism of 2-5 in 10 000 in the 1970s, to 6-9 in 10 000 in studies conducted since 1987. The same studies reported an additional 12,25 in 10 000 individuals with atypical autism/PDD producing a overall rate of about 20 cases in 10 000 individuals.

4. Epidemiology • In our context, many of us are feeling that there is an increase in the number of children with ASD but we have no real epidemiological study to prove it. Autistic children are seen by pediatricians, psychiatrists, both pediatricians and psychiatrists, by professionals working in special education centers but there is no epidemiological data collected at a national level and there is no clear policy about who and how to establish the diagnosis. • The disorder would now tend to be over-diagnosed because screening of autism is not always easy and the differential diagnosis between autism and mental retardation is not always very clear.

5. How to address the problem of autism in our Palestinian context ? How to be effective in the treatment of severe disorders where only a multidisciplinary approach can bring results? On what professionals, which networks can we base ourselves to offer a support as consistent as possible in situations where intervening alone is not enough?

6. Clinicalcharacteristics • The clinical characteristics of the children we see in our clinics are the same as the ones described in international literature. • Autistic spectrum disorders comprise three areas of deficit –social reciprocity, communication and restricted behaviors and interests- and also require recognition of some type of abnormality before 36 months of age

7. Clinicalcharacteristics Social deficits: • Difficulties in reciprocal interaction and in the ability to form relationships • Lack of automatic social responses • Lack of eye contact • Atypical patterns of emotional expression • Failure to imitate • Difficulties in the development of reciprocity, joint attention, and awareness of emotional and mental states in self and others

8. Clinicalcharacteristics Communication difficulties: • Lack of, or unusual social quality of language • Reversing pronouns, immediate echolalia or delayed echolalia or stereotypic speech borrowed from other people or videos, often with identical intonation, sometimes with meaning, and making up words (neologisms) • Abnormalities of pitch, stress, rhythm and intonation • Deficits in non verbal communication, including in the use of gestures, such as pointing, nodding and showing

9. Clinicalcharacteristics Restricted, repetitive interests and behaviors • Unusual preoccupations and circumscribed interests • Compulsions and rituals • Stereotyped movements • Strong reactions, positive or negative to sensations such as smell, touch, sight or sound

10. Onset • The most frequent and recognized in literature is the "early onset" where there are symptoms related to interactions and to psychomotor development • The other kind of onset is the late onset, in which symptoms appear only after the first year of life (but this is the most common type that we see at our center)

11. Etiology A lot of controversy: • Is it only a cognitive deficit or a disorder of emotional or affective nature? Is there a third disorder that could have cognitive and emotional deficit at the same time? • Is it only a neurological disorder?

12. Etiology • The multi factorial vision: many authors agree on the fact that autism can be multi factorial (vulnerability factors then secondary factors of fixation and maintainance) • Genetic factors: Several regions on the karyotype could contain genes of vulnerability (15p and 7q maybe), regions where there would be high chances to find implied genes, but nothing has been proven until now. • Biochemical aspects: increase in the platelets’ serotonin and the existence of abnormal responses to stress in the sympathetic nervous system and in the hypothalamic-pituitary axis, while the basic functioning of these two axes seems normal • Psychoanalytical concepts

13. Etiology • Vaccinations, food, generalization of antibiotics and pollution would be environmental factors that have an impact on autism. • Until now all the studies which have searched for the link between all the above and autism have excluded these reasons • If some studies have shown that there was a modification in the intestinal permeability in some of the autistic children, it is not clear if it is a cause or a consequence of abnormal eating habits of some of the children.

14. Diagnosis and Evaluation The diagnosis must be established by a multidisciplinary team, each professional contributing to the diagnosis with his/her expertise To look for associated medical disorders: • Family tree with all genetic illnesses in the family, consanguinity, history of miscarriages, presence of pre or natal complications, results of the screening tests after birth, developmental milestones, growth chart • Neuro-pediatric work up, EEG. MRI and CT Scan will be asked for if there are abnormal neurological or cutaneous signs) • Genetic consultation; Karyotype high resolution (fragile x for example) • Metabolic urinary exams

15. Diagnosis and evaluation Audiology work up Child psychiatry evaluation • Observation of the child, complete history from the parents, developmental history • Diagnostic scales: ADI-R (“Autism Diagnostic Interview revised”) and CHAT (Check list for Autism in Toddlers) are the most commonly used. Psychological evaluation Speech and language evaluation Occupational therapy evaluation

16. DifferentialDiagnosis • Mental retardation: children with autism often exhibit a cognitive pattern that is different from those with only retardation • Receptive-expressive language disorders • Severe psychosocial deprivation • Selective mutism • Schizophrenia developing in childhood • Differential diagnosis within the autism spectrum disorders

17. Management of autism in palestine We are facing a major problem in Palestine because we do not have enough resources and very few people are trained in this field. Therefore, we constantly need to “improvise” with our existing resources and show a lot of flexibility

18. Management What we have: • Psychiatric/psychological interventions: for the family and the child • Medical treatment for agitation, aggressive behaviors • Speech therapy: augmentative communication (PECS) • Special education programs • Lobbying from groups of parents who are eager to develop programs

19. Management What we still don’t have: • Psycho educational programs (TEACCH) • Enough human resources

20. CONCLUSION • There is still a lot to be done! • But what we must now focus on is multidisciplinary work

21. References • Alvarez A. and Reid S., Edited by, “Autism and Personality: Findings from the Tavistock Autism Workshop, Routledge, 1999. • Osterling J., Dawson G. and McPartland J., “Autism”, In Handbook of Clinical Child Psychology, Third Edition, Edited by C. Eugene Walker and Michael C. Roberts, John Wiley and Sons, Inc.,2001, pp. 432-452 • Golse B. et Delion P. Edited by, « Autisme : état des lieux et horizons » (Autism : State of the Arts and Horizons), le Carnet PSY, Erès, 2006 • Hochman J. « Pour soignerl’enfantautiste » (Providing Care to the Autistic Child), Odile Jacob, Mai 2010 • Wintgens A. et Hayez J-Y., « Guidance psychopédagogique des parents d’enfants atteints d’autisme » (Psycho-pedagogical Guidance of Parents of AutisticChildren), Presses Universitaires de France La psychiatrie de l'enfant 2006/1 - Volume 49