Overcoming Barriers: Autism in the Somali Community (English version)

Overcoming Barriers: Autism in the Somali Community (English version)

There’s no word in our language that
describes what autism is and we don’t know what it is. I have never heard of
autism before it is not something I was aware existed in my country this is the
first time I heard of it and I don’t know what it is. There is no word for
autism in the Somali language we do not know what it is this is the first time
we heard of autism. The word autism is the English word. There’s no word or any
way to describe in Somali what it is. I have heard of autism only in this
country. My name is Hibo Ali Ahmed. I have two girls with autism their name
are Ruedar and Taslim. Seven years old from four years old. They have autism. I have not heard of autism before. This was
the first time I saw someone with autism I haven’t seen a child like this
with the neighbors or people I know. My name is Marion Hassan
I have a son with autism, his name is Abdul Hassan, he’s now 16 years old. At
the beginning everything was really hard I did not understand the illness. Everything was so hard I went through really difficult times but now I am
beginning to understand what is wrong with him but before I had no
understanding of the illness and what it was. It was a really dark time. My name is Amina Mohammad Abdi known as Mulki my
son’s name is Monasa and he is 12 years old. An appointment has been arranged in
four weeks to see the paediatrician. When I saw they specialists she has
given my son some toys and then she watch him and said he has autism My name is Saeed
Hassan Muhammad my son is called Musaab Saeed Hassan Mohammad he’s 10 years old. We contacted the doctors when he was
around 2 years the doctors then arranged a specialist then we went to the doctors
to see her. She started doing her assessment in different ways just
kept moving. I found in the process he keep running around different places
he was unsettled. Then she said he had autism. When the doctors told me my
daughter had I was so confused I had no idea what
that meant. Then I was told she’s gonna live with autism with the rest of their
life. I felt lost. I was heartbroken I had no choice but to be strong and do
everything I can for my son. I worry about him more than any of my other children. All my other
children are very independent. They can catch the buses you don’t worry about
them, about their life but you worry about him all his life. You worry where he’s
gonna go, what he’s doing on his own. You don’t know what he’s going to do. My son
causes the police in the area to know me All the area police know me and my son. He used to be up all night. One night a neighbor saw a child standing at a
window all night and so the neighbor called the police. People thought I was a
mum who was a loser. When the police came around they asked me why your son is
standing at the window naked I explained he has autism. When I try to sleep he
stays up all night standing on the window and then the police started
looking around the house and saw my other children. They could see all the
other children sleeping the beds. There’s been a lot of interest about
autism within Somali communities from different parts of the world so this
includes evidence from Stockholm in Sweden in Minnesota, London, Bristol now
the Netherlands, where communities have noticed that there might be something
going on in terms of higher rates of autism in the community and likewise
clinicians and researchers have noted that too. Traditionally there was very little research on migrants and ethnic
minorities in relation to autism because it’s such a rare condition large studies
haven’t been carried out but over the last decade a number of them have been
carried out and there’s now increasing evidence that the rates of autism in
some migrant communities and particularly the Somali community are
higher than in non migrant communities My family and friends were shocked. They
can see he was different and was not like the other older children they were
confused and just shocked. You know the Somalis they can call you names to the
point where someone I did not expect said I had a crazy child and there’s the
others that come to your house and see your child and then they are surprised
and say it that your child that was ill? who seemed so able? Well why not? the child
has hands and legs. What people say kills your morale. It seems our people have
wrong understanding of autism as if health is in their hands. We are
responsible for our son myself and his mum were happy the way he is, Allah gave
him to us. I really don’t care what people say I just ignore them. They say
things like that boy’s not talking he’s deaf. The least they could say is that he
has autism, instead they say he’s deaf That it’s not fair description of him.
They say hurtful things to describe your child I think there’s a lot of stigma
associated with autism in the Somalian population there’s quite a big belief
that it doesn’t exist at home and that this is maybe a Western disease. Maybe if
it doesn’t exist at home it’s infectious I think there’s a huge group of
different belief systems also the idea is this a mental health issue or is this
a developmental issue? What does that actually mean can be quite difficult for
families to sort of work out in their own mind and there is a very high level
of stigma associated with mental illness so that may well be adding into the
difficulties that families experience when my son Zach he was diagnosed with
autism and I have not heard of the condition and it was difficult to
explain to my community what autism is the closest interpretation was
mental illness and that came with social exclusion. I think it’s really important
for all professionals to know that the cultural difference and the barriers
that this community is facing I think we all know and understand professionally
about autism but I think it’s really I know that I’ve had to learn more about
how it is within their community. And so there’s the barriers are lack of concept
and understanding of the condition lack of language and sort of language barriers and barriers with the system. So you have been your child has been given a diagnosis of
autism what happens next? where do I go? who do I go to? what do I
do? what does this mean? So you know going through the normal process like any other
child has been given a diagnosis you so you go through the grieving process but
then for Somali families it is the not knowing what to do next and then they
have got the challenge of dealing with the community so that
would be you know you have got this pride that you know you have to have
this important family face to look after and then you have been given a child who
has got a diagnosis that is very close to mental illness and so because of this
stigma with mental illness people try and hide and not talk about it and that
is very difficult. When I moved to the country I was trying to get hold of
social services but I don’t know what happened. I don’t know what’s going to
happen we do not seem to understand each other. When I had all the problems with
my sons sleeping I had a social worker but my social worker used to say I can
take him somewhere called respite. My understanding of respite was I would
lose my son when he says she’s going to take him somewhere else called respite
he used to get upset and then he used to say no I didn’t need anything from you. If only they would have said they can arrange support in the house then yes. There was
no way I can send him off somewhere. I can’t sleep without not seeing him I
could not keep my other children and send him off somewhere. If I understood
respite the way I did now then I would have used it. I understood that time as
if my child’s taken away from me. I could not allow my son to be taken
away from me while I’m alive that I thought it is easier to suffer I have been so overwhelmed with
everything that has been happening, there are appointments that were made for the
girls but I forgot so did not attend. So there has been mixed messages and take ons when it came come to social workers in the community and the families we
have been working with so we have gone quite a large number that would not
access social workers only because the fear of social services will take
their child away. When they have contact with social services and of course a
lot would do would be to do the fact that there is a language barrier and
that it’s not easy for them to pick the phone up and say this is what the
problem is. Sometimes they might not want to talk about what the reality is with
again with the with the fear of their child be taken away but also not knowing
what the role of actually social services it is. One of the main focuses
and solutions was actually following a consultation that Bristol City Council
did as part the short break consultation they did a one-day event with a Somali
community and it was really well attended which was fantastic to see as
part of that we did some workshops so we were reaching out to the families asking
them what they wanted what was the barriers stopping them accessing the
service. We are trying to do is to have drop-in sessions in in our office with
somebody coming from social services and normalizing social services are there to
help you and that, you know we only had a first session and that was
really successful. The Somalian link workers are, we’ve got two who work very closely
with us and they are incredibly wise brilliant women and I must admit that I
always feel as though the consultation is hugely
better quality if one of the link workers are involved. So the service I
provide is providing family learning courses for autism and we’ve been very
aware that a number of Somali families find it difficult to access or
understand the autism content in those courses. So
one of the things that we did was working with Nura and Autism
Independence’s to adapt those resources so that it met the needs and their
understanding of of the Somali community so that was working with the content
looking at translating the materials looking at changing some of some of the
format so that it was more accessible and one of the biggest things was taking
it the course to a venue that they felt comfortable going to and that also that
somebody from their community was leading the course that they
trusted and had confidence in it’s that I think for us was a big result because
when we first initially piloted the course adapting the course into a Somali
autism course we had very little take up but since changing and since going to
events in the community we’ve now had perhaps a 70% increase in the number of
families that are accessing the courses The only help I was getting was from
the school, they supported me to get help they used to look after my son
sometimes and gave me extra support when it was holiday times. They
were very supportive. No one else helped me not even family or friends well my
family is not even in this country. I had to become friends now with the autism
community. My family and my community are now families who have autistic children. They are my people. So I think when a child first comes into school and they
are beginning to struggle and we are seeing
that there’s gaps between them and their peers and there’s
difficulties and you start talking to a family you have to be very sensitive
they do automatically quite a few families we’ve worked will look at
alternatives, is there something else that I can do? Is there a cure is there
this is there that? So it is building up trust getting to know a family really
well going to you know if you’re saying I’ve we want to get an expert opinion
say speech and language therapists it’s going to those appointments because
that’s quite scary to go to an outside agency to a professional that might be
sitting in a medical environment to actually go, so you going with them to those
appointments going with them to pediatricians appointments. So you’re
almost holding hands with them and you’re going through this home and school
together so for the for the best outcome for the child it’s not so that we can
get a label it’s so that we can educate and get the best provision to support
your child Two months later he started to read books in Venturers Academy. It goes to show you the
school he’s going is a school who has professionals and is skilled for
children with autism he was much calmer. Before all the time
his mother would hold his hands taking him to school because I work most of the
time but now in his new school he goes down himself in the taxi. He made so much progress. The type of young people that attend Ventures Academy they all have autism as
a primary need. The majority of children do come from
Bristol a range of cultural backgrounds at the moment we are not far off 40% of
our children come from the Somali population. Quite a few of those young
people are first-generation being in this country and I would say
approximately half of those young people who attend here from the
Somali population are deemed to be nonverbal. The kind of provision that we
have here at Ventures Academy I think is quite unique to the region clearly all
the staff members are highly skilled highly trained in dealing with young
people with autism but we do have clinical experts here in speech language
therapy we have clinical expertise in occupational therapy and we have a range
of professionals who are clinically trained in the world of mental health
and psychotherapy and by bringing together these adults and professionals
who are highly skilled highly committed working together shoulder by shoulder
the outcomes which we’ve already seen here at Venturers Academy is life
transforming and that is really humbling to witness Coming to Autism Independence group I
have learnt a lot of knowledge I have learnt things that I never heard of. What
you learn from the group is that what other parents have done with their
children and where to get help. You find people who are in the same boat and
similar and this gives you confidence the thing is coming to the group means I
am NOT different everyone at autism independence group has a child with
autism and so you are not alone. Everyone has different experience which means
they can share and you say oh I have also seen that behavior or other people
have seen similar behavior with their children. I believe the key thing we need
to do is enable families to be able to lead their lives and a real example is
my own personal position with my son you know we don’t have the resources to have
somebody coming in and doing everything for us it’s enabling educating
empowering. Making parents feel that they can achieve beyond what they
dealing with. It’s about looking the unit the well-being off the whole family when
you can do things yourself you’re able to do so many things and I think that is
the approach I hope that every service would be looking at you know seeding
holding hands but letting go when that family is ready but that work needs to go
in beforehand until we get to that position and that would save our society
so much. What is it that we need that can change that family life? Obviously now we
there’s lots of research out there which is talking about increased rates
increased burden of autism in the Somali community. I think there’s not so much
out there in relation to solutions what are we going to do next. So from a
research perspective we definitely need more research
more Applied Research in seeing how can we overcome these barriers to help
seeking behaviors? How can we overcome barriers in relation to our assessments
of children even adults with autism? Researchers and the community working
together can be a very very powerful combination as we have noticed in the
past so I really look forward that we to working further with Nura and Autism
Independence in answering some of these unanswered questions in the future. You
should do all you can and as much as you can which can make a huge difference to
the child. Because catching them young is more effective. My advice to you to
people do all you can while they are young. It does need to be quite a
holistic approach and that’s that’s the beauty of knowing your community knowing
the agencies and knowing who’s out there because not everybody knows that there’s
Autism Independence or there’s you know independent speech therapies or play
therapists it can all be pulled together to the good of the child and that family.
I am asking these people professionals to help us there are so many things we
need help with I would also encourage other people to also seek help to go out
there and get help and I hope that these people will help us. I actually think
it’s much better to think of autism as a difference and so it’s a difference
that it’s a neurodevelopmental difference the brain looks almost
identical there are some subtle differences in the brain however the way
it’s connected is different and this means that many children and adults who
are on the autism spectrum actually have very very good at certain things. One of
my thoughts and ideas is what we need we need somewhere that families can go
for perhaps a one-day event or course they can learn all they need to know
about all the different agencies that can help support them whether from
education from social care from health but also they can learn the tools that
they may need to understand about autism as well so my thoughts and ideas are
that we develop a course to help support and signpost and ease some of the
anxieties for families following that first diagnosis point that they receive. So through this co-produced research
we’ve already started to see impact and change we’ve started to see the ways
that it can raise awareness both in the local community amongst professional
groups and this might we hope will start to feed into changes in the way that
services are delivered and that support is provided for families who quite
desperately need it so we really hope that this is going to lead to further
changes and solutions that are very much focused on the lived experiences of
families in the Somali community. We have a moral obligation to find a way to
unlock that potential in the child to find that little bit of magic that no
one else’s has quite done yet. My advice to other families who have a child with
autism is to get everything that the child’s entitled to while they are young
so that the child gets more support. It’s important that a child with autism get
support early on so if you have a child at home you need to consider that I
would like to say you take your child to respite. There’s nothing wrong with it. Don’t go through the difficulties that we were through. I would say Allah brings
illness it’s not in your hands Allah also brings health, nobody makes the
child in their hands but you shouldn’t be shy of for autism is. Nobody brings
illness to you people ask if he has autism
I am NOT shy of my son’s autism he is my son.
I love to see aspirations and expectations being at
the heart of everything we do and whether it’s me sitting at Autism Independence office or whether it’s a commissioner who is sitting in
City Hall. I think the key is we share that vision and that expectation for
that child I like to see more of lived experience knowledge being used because
we can use theory and we can have all these amazing qualifications but if you
don’t live with that child you would not come from their angle. I would love to
see everybody taking responsibility and everyone thinking of that child at the heart of every bit of paperwork they do. you

Author: Kennedi Daugherty

24 thoughts on “Overcoming Barriers: Autism in the Somali Community (English version)

  1. May Allah swt protect us and our children against the evils I'm this dunya subhanallah why are minority communities more affected than any other community especially Somali community

  2. Iska ilaaliya TALAALKA, TALAALKA, TALAALKA Aniga yurub ayaan joogaa 3 caruur ma aanan talaalin. Dhaqaariirta gaalada ah oon cariurteena ku aamineeno aan iska ilaalino. Jzk kheyr

  3. Wax yaabaha sababa 1 waxaa ka ah TALAALKA waa cilmiyan wax la cadeeyay. Somalidana waa dadka 88% ilmahooda Talaala. Hadii iidan ka maarmeen aan la tashano Dhaqaariirta muslinka ah inta aan ilmaheena gaalo u dhiibin.

  4. Aniga wiilkayga waa noocaa laakeen isaga macaan ayaa udheer.
    Waxii dhibanba ale haka kor qaado dhibka.
    Amarkaaga aloow waa ogolahay.
    Anagana ajarka yaga hanaga dayacen.

  5. Stop vacinating your kids with disease. Kids who receive these government enforced vacinations end up with one thing or another

  6. Its haram to vacinate a healthy child with something they say may prevent something else this is forbidden but who follows Allahs laws

  7. Some time the white people in the country say you have autism but it’s not true unless they are different. I remember back in school I remember when my teacher said I had autism but I didn’t and I know that for sure because now I’m 18 years old and I’m healthy. The only reason why the doctors said this is that the somali mums act Dopy no Offence that why they act like that.

  8. The way the somali kids are raised makes the kid to have autism because the somali children are locked inside their home and they don’t get spoken to like their own age. Please somali people don’t ever assume that your child has autism.

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