Understanding autism
Understanding autism

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Understanding autism

2.2 Problems in accessing support

A big problem for many parents is finding out what support is available and how to access it. With so much information available online, this might seem surprising. But not everyone has the time, money or skills to seek the help that they need, and there is also the difficulty of deciding which of the many services offered are reputable and risk-free. These difficulties may be particularly salient in ethnic minority communities, accentuated by cultural reservations about using the forms of support that are offered, as Dr Prithvi Perepa explains in these video clips:

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PRITHVI:
Some of the factors which make life difficult for families who have a child with autism coming from minority ethnic communities could be community-based factors, where it is about how acceptable, how easy is it for them to actually get support from their own communities. For example, there's been an assumption in the UK in the past that families from minority ethnic communities don't access services, because they look after their own kind of a thing. And yet the evidence actually is saying it's contrary. Because often these families are probably the only family from their community living in the UK.
So there's not necessarily a network of support, which would then mean that they perhaps also are not aware of sources for support. Where do they get support from? And if the families have limited language-- such as English in the UK, that dominant language-- then how do they access services, professionals, and even information about benefits or diagnosis or any of those kind of things? So there's a whole bit about how is information actually provided to these families.
Some parents have also said that some of the services that are there perhaps don't actually meet their own cultural values, understandings, and things like that, even simple things like parent-support groups, because they're assumptions, again, about who can access and contact us. And our studies in the UK say a majority of families from minority ethnic communities also have economic difficulties, which then has an impact of can they actually afford to go to a parents support group? Do they have access? Can they drive? Can they take time off to do-- all of those kind of practical elements make it difficult to seek support, follow support?
And professional knowledge about strategies also vary. So a number of parents who still are advised by speech and language therapists for example, that using home language would be inappropriate for their child. Again, it gives confusing mixed messages for parents, because they don't know what to do. So do they not use their language anymore?
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Yet Prithvi also emphasises that different cultural attitudes to autism may help ethnic families to view autism positively and to seek the support they need within their own community:

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PRITHVI:
The cultural values that families have around autism or disability are not necessarily always negative. Because that's what literature often suggests that if a family has autism and they come from minority ethnic communities, they are somehow backward, sometimes it suggests. But in fact, some of the aspects that-- or cultural beliefs that families may have could actually be helpful. So if you believe that your child has been given to you with autism because of God's willing on this kind of a thing, it's not necessarily negative. Because that might actually help the parents to accept the child more easily and try and find how to help that child.
Similarly, some cultural groups really still say let's look at the child and look at that kind of support of the whole community around that child, which does exist in some of the communities in the UK, can be quite helpful again because they're not necessarily looking at labelling the child or identifying the child with a disability, but they are saying, this is how this person functions. Now how do we as a community look after and support--
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