Transcript Autism and culture - Vale of Glamorgan

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Impact of culture and ethnicity on
assessment of autism
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Wales - an ethnically diverse country
Long history of migration from Europe and beyond
•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
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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
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ethinicity
number % of
of pupils pupils
male
% male
female
% female
White
220.00
72.13
194.00
88.18
26.00
11.82
Black
22.00
7.21
16.00
72.73
6.00
27.27
Asian
22.00
7.21
19.00
86.36
3.00
13.64
Mixed race
18.00
5.90
14.00
77.78
4.00
22.22
Chinese or other Far Eastern
3.00
0.98
3.00
100.00
0.00
0.00
information not obtained
3.00
0.98
3.00
100.00
0.00
0.00
17.00
5.57
11.00
64.71
6.00
35.29
other background, not listed
Ethnic Monitoring Category
white
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Asian
mainstream
unit/sp. Class in
mainstream
maintained special
school
independent school
Other - Non-School
(WO)
Black
Mixed race
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Cultural differences in attitudes to
autism
Very little literature
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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)
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Explaining autism: the past is another country
• Changelings :
in which fairies
(or goblins)
stole a baby
and left a fairy
child in its place
"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)
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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
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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)
Victor (contemporary print)
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20th 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.
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You may meet any of these beliefs in
families you meet
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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).
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• Cultural emphasis of independence (Western industrial
countries) result in earlier self-recognition.
▫ Children of urban Greek middle class families developed selfrecognition earlier than Cameroonian families.
• Cultural emphasis of interdependence (Hunter
gatherers, nomadic, and the Eastern Industrialised
countries) lead to earlier development of Selfregulation.
▫ Children of Cameroonian Nso Farmers developed self-regulation
earlier than those of Greek families
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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
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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
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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
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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)
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Communication
• Lack of vocabulary to explain these concepts
▫ Somali – ‘Sad’ or ‘Mad’
• Difficulties working through interpreters
▫
▫
▫
▫
Access
Inappropriate interpreters
Confidentiality
Practical problems
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Aetiology: ABCD study
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.
Parent’s Own Wrongdoing
• 4/8 identified factors that placed themselves at blame
• Mercury fillings….depression…..not enough toys…
Spirituality
• Only African families mentioned this,
describing beliefs held by the community
•“Mainstream” faith protected parents from
indigineous beliefs in spirit possession etc
MMR
• 3/8 families expressed belief in MMR as a causative
• One decided to not vaccinate subsequent children
...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.
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.
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Sourcing Information: ABCD study
Multiple Sources
• Many information sources used;
professionals, charities, friends, family.
Internet
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
• Most popular; every family but one used it
• Intensively used around diagnosis
• Initially non-selective about content
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]
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Returning To Country of origin: ABCD study
Family Reasons
• One mother reluctant to return
due to extended family’s previous
reactions
Host Country Communities
• African families described lack
of understanding in communities
• Most expressed anxiety at
returning
Lack of Support
• Those who might consider
returning cited lack of support as a
reason against
…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…
...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.
...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
"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"
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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.