Impact of culture and ethnicity on assessment of autism 1

Wales - an ethnically diverse country Long history of migration from Europe and beyond 2 16thC – Romany 19thC inward migration to SW Valleys:-rest of UK, Ireland (including Travellers), Italy. to dockland areas: Yemen, Somalia, Malta, China etc. 20thC Large influx post war: New Commonwealth) Later impact of war and political persecution – refugees from around the globe

Child populations: Cardiff 12-15% Cardiff children belong to BME communities 15-20% of ill or disabled Cardiff children belong to BME communities 305 number of children with ASD are identified as having special educational needs Of these 82 ( 27%) are members of Black or ethnic minority communities This includes some children who are or have been in the asylum system 3

4 ethinicity number of pupils % of pupilsmale% malefemale% female White Black Asian Mixed race Chinese or other Far Eastern information not obtained other background, not listed

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Cultural differences in attitudes to autism Very little literature 6

Cultural differences in attitudes to any disability/congenital abnormality Gift from God God’s will (test of faith) Random misfortune without meaning Punishment for sins Punishment for sins of ancestors Mark of good luck Threat ( killed and/or mother killed) 7

Explaining autism: the past is another country Changelings : in which fairies (or goblins) stole a baby and left a fairy child in its place 8 " So the goblins came. They pushed their way in and pulled baby out, leaving another all made of ice." (Maurice Sendak, Outside over there. Puffin Books, Middlesex, UK, 1981)

Manifestation of extraordinary faith, innocence, and innate goodness Brother Juniper and the beggar Disciple of St Frances of Assisi Many classical features of Asperger syndrome or High Functioning ASD in his behaviours 9

Wild children, brought up by animals Feral children ▫ Victor, Wild boy of Aveyron: Wild Peter of Hamelin ▫ Kamala and Amala, the “Wolf Girls” of Midnapore (Imprisoned ▫ Casper Hauser) 10 Victor (contemporary print)

20 th C Cold unemotional parenting (Kanner) Highly heritable neuro-developmental impairment To some extent these two models co-exist in the West, with psychoanalytical explanations still current in France, but not prevalent in UK, Sweden, USA, Australia. 11

You may meet any of these beliefs in families you meet 12

Cultural differences in development Self-recognition (recognising oneself in a mirror) Self-regulation (encompasses compliance, the ability to delay actions and the modulation of emotions in response to contextual demands). 13

Cultural emphasis of independence (Western industrial countries) result in earlier self-recognition. ▫ Children of urban Greek middle class families developed self- recognition earlier than Cameroonian families. Cultural emphasis of interdependence (Hunter gatherers, nomadic, and the Eastern Industrialised countries) lead to earlier development of Self- regulation. ▫ Children of Cameroonian Nso Farmers developed self-regulation earlier than those of Greek families 14

Does this affect what parents first notice? Indian families (in India) with autistic child ▫ Much more likely to recognise social difficulties first White American ▫ Much more likely to notice general or language delay (and also less concerned about social delay) Indian culture values social conformity much more than does American culture May affect when children are first presented to services, and also partnership, treatment options and compliance 15

What are people? What models are there to explain their uniqueness? These are answers provided by a group of parents and professionals at a recent conference. What do you notice about this list? Consciousness Imagination Language Empathy Tools Complex social relationships Spirituality Awareness of impact of actions on the world 16

Autism Not defining but all higher cortical functions and fundamental to our functioning as autonomous and socially integrated individuals Difficult concepts – much harder to understand than, for example, blindness, even when one shares a common language 17

Language diversity in Wales English & Welsh “Languages spoken by pupils at Cardiff schools include Punjabi, Urdu, Bengali, Somali, Arabic, Hindi, Cantonese, Farsi, Pushtu and Gujerati. There are also many other languages spoken by small numbers of children, the total number is estimated at over 50…” (Cardiff County Council) “In April 2006 the most common nationalities of asylum seekers.. (coming to Wales).. were, in this order, Pakistan, Somalia, Iran, Turkey, Iraq, Congo, Afghanistan, Sudan, Zimbabwe and Algeria” (Welsh Assembly Government, 2008). Literacy levels low in some communities especially in women (Bangladeshi; Somali; Yemeni; Gypsy-travellers) 18

Communication Lack of vocabulary to explain these concepts ▫ Somali – ‘Sad’ or ‘Mad ’ Difficulties working through interpreters ▫ Access ▫ Inappropriate interpreters ▫ Confidentiality ▫ Practical problems 19

20 Aetiology: ABCD study Parent’s Own Wrongdoing 4/8 identified factors that placed themselves at blame Mercury fillings….depression…..not enough toys… You look at everything, you look at all your family, what you did in your pregnancy, was there anything you did wrong, and you know, I was worried I used bleach too much and I don’t know why. Spirituality Only African families mentioned this, describing beliefs held by the community “Mainstream” faith protected parents from indigineous beliefs in spirit possession etc...according to our African culture, if a child behaves the way they behave […] they think a child is mentally ill, or possessed. You know, they think he has evil spirits in him. MMR 3/8 families expressed belief in MMR as a causative One decided to not vaccinate subsequent children Yeah, so with [son] and [third child], I just stopped at the vaccinations that come just before the MMR, and everything that comes after the MMR and the MMR, I haven’t given them.

21 Sourcing Information: ABCD study Multiple Sources Many information sources used; professionals, charities, friends, family. Internet Most popular; every family but one used it Intensively used around diagnosis Initially non-selective about content Interviewer: On the internet, are you quite selective about what you read? Parent: Now, yeah, we are. Now, yeah. But before when, you know, in the beginning, we just looked at everything Complementary/Alternative Medicine Commonly encountered when using internet for research Actively tested, investigated or enquired about what they’d read One mother also discussed her intention to consult a faith healer "So we actually went to see someone in a hospital in [host country]. We saw children with the needles on their heads. You know, people actually receive treatments like that in [host country], and they said it’s a cure… now at least six years later, now we learn more about, and we think that is not a cure for the treatment..." God will heal my children, or help them get a little better, yeah, there will be improvement. […] I plan to not go back home on holiday, if we do plan to go back home, I’d rather save money and go see [name of faith healer]

22 Returning To Country of origin: ABCD study Family Reasons One mother reluctant to return due to extended family’s previous reactions …they sort of thought that, you know, maybe there was a problem and I wasn’t looking after him properly, maybe it was my fault… Host Country Communities African families described lack of understanding in communities Most expressed anxiety at returning...all disabilities, the way they are treated here is quite different. Everybody should be proud of anybody, despite their disability, but unfortunately, that’s not how it is where I come from...everybody had an opinion [..]Conduct rituals, he’s possessed, some of them take him to church, prayers, sacrifice, this and that, yeah, everybody just has their own opinion. Lack of Support Those who might consider returning cited lack of support as a reason against "We planned to go back home, but the reason is now we have children who are Autistic, there’s no service back home, there’s no way like [daughter] could cope in mainstream school. Autism doesn’t exist in my country"

Conclusion Very sparse literature Need for ethnographic and psychological research in this area Practitioners need to be open to the possibility that their own class, cultural and professional conditioning will ensure that their conceptualisation of autism is likely to be very different from that of the families with whom they work This will be heightened by additional cultural, linguistic & religious difference. 23